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This is to certify that the
dissertation entitled

PREFERENCES OF CONSUMERS AND CAREGIVERS
FOR INCLUSIVE OVER NONINCLUSIVE
RECREATION SERVICES
A COMPARISON STUDY

presented by

MARY LOU SCHILLING

has been accepted towards fulfillment
of the requirements for the

Ph.D. degree in Park, Recreation, and Tourism
Resources

 

 

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PREFERENCES OF CONSUMERS AND CAREGIVERS
FOR INCLUSIVE OVER NONINCLUSIVE RECREATION SERVICES
A COMPARISON STUDY
By

Mary Lou Schilling

A DISSERTATION

Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY
Department of Park, Recreation, and Tourism Resources

2003

ABSTRACT
PREFERENCES OF CONSUMERS AND CAREGIVERS
FOR INCLUSIVE OVER NONINCLUSIVE RECREATION SERVICES A
COMPARISON STUDY
By
Mary Lou Schilling

Noninclusion continues to be the typical approach in providing
community-based recreation services for people with disabilities (Anderson &
Heyne, 2000; ARPS/NTRS, 1997). This traditional approach is inconsistent with
social policy and legislation that advocates inclusion, normalization, least
restrictive environments, and social role valorization. No current literature seeks
consumer input related to their preferences for inclusive or noninclusive
recreation services. This lack of consumer input is inconsistent with trends in
service delivery which embrace consumer empowerment, decision making,
person-centered planning, and self-determination.

The purpose of this investigation was to identify consumers’ and
caregivers’ preferences for inclusive or noninclusive recreation services.
Participants were individuals with diagnoses of moderate or mild mental
retardation (n = 62) and their caregivers (n = 46). Consumers were interviewed
using a forced-choice questionnaire supported by pictorial cues. Caregivers were
surveyed using a questionnaire of Similar content. Descriptive and statistical
techniques were used to compare consumer inclusive preferences to level of
cognitive impairment, gender, past involvement in inclusive recreation, type of

residence, and age. Caregiver data were analyzed comparing inclusive

 

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'q

 

(I

preferences to past involvement in inclusive recreation, years of caregiving
experience, age, and inclusive related training.

Results indicated that caregivers overwhelmingly preferred inclusive
recreation services. Younger caregivers and those with less experience were
more likely to prefer passive, home-based inclusive activities. Older caregivers
and those with more experience were more likely to prefer active, community-
based inclusive activities. Results also indicated that consumers preferred
inclusive recreation but not to the same extent as their caregivers. Consumer age
was found to Si gnificantly impact their preference for inclusive recreation
services. Descriptive Statistics also revealed that gender and housing impacted
consumer preference for inclusion. Finally, consumers with diagnosis of
moderate and mild cognitive impairment were found to be valid and reliable
sources in reporting their preferences for inclusive recreation services.

Based on the results of consumer and caregiver inquiry recommendations
were made to provide a combination of inclusive and noninclusive community-
based recreation programs. Consumers should be encouraged to be active
decision makers in their leisure, life, and work related activities. Caregivers
should be provided with increased formal education regarding best practice
strategies in the implementation of community-based, challenging leisure
activities. A partner program was proposed to provide a structured strategy to

facilitate inclusive recreation opportunities for people with disabilities.

Dedicated to my husband, Alan,
and my children, Patrick, Katie, and Ben.

iv

ACKNOWLEDGMENTS

This project would not have been possible without the support of my
family, my committee, my colleagues, and the consumers, caregivers, expert
panel members, and referring agencies who actively agreed to participate. The
following acknowledgments identifies these individuals and provides a thank you
for their support.

To the consumers who agreed to be members of the consumer panel, pilot,
and the primary investigation. To Lynn, Al, Tim, and those consumers who
agreed to be photograph models and forever pictured in the appendices of this
dissertation. To the panel of experts who offered insight in the design of my too].
To the caregivers who agreed to participate in the pilot and the actual study. To
Mid-Michigan Industries, the Mt. Pleasant Center, Gratiot Community Mental
Health, McBride Homes, Inc., CenCare AFC Homes, and Central Michigan Non
Profit Housing for their assistance in referring caregivers and consumers as
participants in this investigation. A Special thank you to the employees of Mid-
Michigan Industries and the Mt. Pleasant Center who allowed me to interview
consumers at their work or home locations.

To the members of my dissertation committee at Michigan State
University. To the Chair, Dr. Richard Paulsen who offered hours Of support,
insight, and direction in the design and implementation of this investigation. To
Dr. Gail Dummer and Dr. Margot Kurtz for their technical and methodological
support and guidance. To Dr. James Bristor for his encouragement, enthusiasm,

and good humor throughout the design and implementation of this project.

TO the faculty and Staff Of the Department of Recreation, Parks, and
Leisure Services Administration program at Central Michigan University for their
on-going support and encouragement.

Finally, to Ed Barth who provided encouragement, support, and many

hours of editorial comments throughout the design and analysis of this project.

vi

TABLE OF CONTENTS

LIST OF TABLES ............................................... x
LIST OF FIGURES ............................................... xi
CHAPTER I
INTRODUCTION TO THE STUDY .................................. 1
Introduction and Statement of the Problem ........................ 1
Purpose Of the Study ......................................... 5
Hypotheses ................................................. 5
Independent Variables ........................................ 6
Dependent Variables ......................................... 6
Delimitations ............................................... 7
Limitations ................................................. 7
Basic Assumptions ........................................... 8
Operational Definitions ....................................... 8
Overview ................................................. 10
CHAPTER H
LITERATURE REVIEW ........................................... 11
Introduction ............................................... 1 1
Developmental Disabilities and Mental Retardation ................ 11
Theoretical Aspects Influencing Service Delivery .................. 14
Social Role Valorization Theory ......................... 17
Legislative Influence ........................................ 19
Recreation Preferences of People With Disability .................. 23
Perceived Barriers to Leisure Participation and Inclusive Recreation
Services ............................................ 26
Barriers that Influence Participation by Individuals ........... 26
Barriers That Limit the Provision of Services
by Recreation Agencies ................................ 3O
Perceptions of Service Providers, Peers, and Consumers
Towards Inclusive Recreation Services .................... 32
Perceptions of Service Providers ......................... 32
Perceptions of Peers ................................... 34
Perceived Value of Inclusive and Special Recreation Services ........ 35
Strategies to Foster Inclusive Recreation Services ................. 40
Empowerment, Personal Choice, and Decision Making
of Persons with Disability .............................. 46
Interviewing Persons with Mental Retardation .................... 49

vii

CHAPTER III

METHODS ..................................................... 56
Introduction ............................................... 56
Section A: Development Of the Instruments ...................... 56

Overview ........................................... 56
Development of the Consumer Instrument ................. 57
Pictorial Cues .................................. 58
Activities represented in the pictorial cues ..... 60
People represented in pictorial cues ........... 60
Choreography of pictorial cues .............. 61
Reliability and the Instrument ..................... 63
Reliability and the Interview Process .......... 64
Reliability of the Interview Tool ............. 64
Validity Of the Instrument ........................ 65
Validity and the Sampling Group ............ 65
Validity and the Interview Delivery Process . . . . 66
Validity and the Instrument ................. 66

Method Used to Select the Panel of Experts
and the Panel of Consumers ....................... 67
The Panel of Experts ...................... 67
The Panel of Consumers ................... 68
Consumer Interview Instrument .................... 69
The Consumer Pilot Study ........................ 7O
Selection of Pilot Study Participants .......... 70
Consumer Pilot Study Procedures ............ 70
Analysis of the Consumer Pilot Study ......... 72
Development of the Caregiver Instrument .................. 72
Caregiver Instrument ............................ 73
Caregiver Pilot Study Procedures .................. 73
Selection of Caregiver Pilot Study Participants . . 74
Caregiver Pilot Study Analysis .............. 74
Section B: The Study ........................................ 74
Selection of the Participants ............................. 74
Consumer Interview and Caregiver Survey Procedures ........ 75
Consumer Interview Procedures ................... 75
Caregiver Survey Procedures ...................... 81
Treatment of the Data ................................. 82

CHAPTER IV

RESULTS ...................................................... 86
Introduction ............................................... 86
Sample Groups ............................................. 86

Consumers Sampled ................................... 86
Caregivers and Individuals Without Disability Sampled ....... 89
The Panel of Experts ........................................ 90
The Panel of Consumers ..................................... 92
The Consumer Pilot ......................................... 92

viii

The Caregiver Pilot ......................................... 93
The Results of the Primary Investigation and

Relationship to the Hypothesis ................................ 94
Summary ................................................ 1 15
CHAPTER V
CONCLUSIONS AND DISCUSSION ............................... 117
Purpose .................................................. 1 17
Conclusions .............................................. 1 l7
Caregivers Preferences for Inclusive Recreation ............ 117
Caregivers Preferences Based on Past Experience
With Inclusive Recreation ............................. 120
Caregivers Preferences Based on Years of Experience ....... 121
Caregivers Preferences Based on Caregiver Age ............ 122
Caregivers Preferences and Degree of Training ............ 122
Summary of Caregivers Preferences ..................... 123
Consumer Preference for Inclusive Recreation ............. 124
Consumer Preferences and Gender ...................... 125
Consumer Preference Based on Diagnosis ................ 125
Consumer Preference Based on Consumer Age ............ 127
Consumer Preference Based on Living Environments ....... 128
Consumer Preference Based Upon Previous
Involvement in Inclusive Recreation ..................... 130
Reliability of Consumer Data .......................... 131
Summary of Consumer Preferences ...................... 131
Discussion, Implications, and Recommendations ................. 133
Contributions to the Body of Knowledge ................. 133
Theoretical Contributions ............................. 136
Implications and Recommendations for Recreation Services
for People with Developmental Disabilities ............... 137
Implications and Recommendations for Services
to Caregivers ....................................... 139
Implications for Research ............................. 140
APPENDICES
Appendix A: Photograph Release ............................. 143
Appendix B: Pictorial Cues (Photographs) ...................... 146
Appendix C: Panel of Experts Survey Tool ...................... 153
Appendix D: Consumer Panel ................................ 166
Appendix E: Consumer Interview Instrument .................... 174
Appendix F: Consumer Pilot ................................. 193
Appendix G: Consent to Participate ........................... 201
Appendix H: Caregiver Questionnaire .......................... 204
Appendix I: Caregiver Pilot .................................. 208
Appendix J: Agency Contact Letter ............................ 212
BIBLIOGRAPHY ............................................... 213

ix

Table 3.1:

Table 3.2

Table 3.3:
Table 4.1:
Table 4.2:
Table 4.3:

Table 4.4:
Table 4.5:

Table 4.6:

Table 4.7:

Table 4.8:

Table 4.9:
Table 4.10:

LIST OF TABLES

Procedural Steps involved in the development

of the consumer instrument ............................. 5 8
Procedural steps involved in the development
of the caregiver survey tool ............................. 73
Consumer interview procedures .......................... 76
Study results related to each hypotheses ................... 94
Consumers’ preferences for inclusive recreation, according
to Specific activities ................................... 96
Consumers’ preferences for inclusion, according to consumer
diagnosis ........................................... 99
Preference for inclusive recreation, based on gender ......... 100
Preferences for inclusive recreation, according to consumers’
previous involvement in inclusive recreational experiences . . . 102
Consumers’ preferences for inclusive recreation according
to type Of current residence ............................ 105
Correlation between age and preference for inclusive
recreation .......................................... 107
Preferences for inclusive recreation, according to age
groupings .......................................... 107
Caregivers’ and consumers’ preferences for inclusion ....... 109
Caregivers’ experience with inclusive recreation and their
preference for inclusion ............................... 11 1
x

LIST OF FIGURES

Figure 4.1: Consumers’ preference for inclusive recreation
according to type of current residence .................... 104
Figure 4.2: Preference for inclusive recreation, based on age of caregiver . 108

xi

CHAPTER I

Introduction to the Study

Introduction and Statement of the Problem

The early 1900s brought with them such advances in medical technology
and treatment that persons with Si gnificant disabilities survived the acute phases
of their impairments (Wolfensberger, 1975). Subsequently, parents identified
concerns about their ability to properly care for and manage their children with
disabilities at home. Eventually, state-operated institutions emerged to provide
residential care and services to people with cognitive and physical impairments
(Gelb, 1995; Wolfensberger, 1975).

AS the number of people residing in State institutions increased, it became
necessary to determine the most effective Strategies to serve and care for this
segment of society. Educational specialists and allied health professionals
emerged to create a unique body of knowledge offering strategies and protocols
that were intended to improve the training provided to people with disabilities
(Crowe, Auxter, & nyer, 1981). Initially, these services were directed,
philosophically, by the medical model -- a model that focuses on curing or
ameliorating illness, impairment, or disability (Wolfensberger, 1975). A
physician guides a medical team through a course of action that is intended to
increase a person’s level of functioning and potentially cure the residual deficits

caused by that individual’s disability.

Eventually, the medical model came under scrutiny. Professionals
working with people with developmental disabilities knew that a cure was not
likely. They recognized the need for Specialized training and services to enhance
a person’s functional Skills and maximize levels of personal independence in
home, work/school, and leisure pursuits (Bullock & Mahon, 1997).
Philosophically, the principles Of normalization (Wolfensberger, 1972),
mainstreaming, integration (Austin & Crawford, 1996; Smith, Austin, &
Kennedy, 1996), and inclusion (Scherschli gt, Chiunti, & Burkhour, 1992)
supported the need for a model of service delivery that advocated consumer input,
decision making, and empowerment.

In the mid to late 19803, person-centered planning became the primary
focus of service delivery for persons with developmental disabilities (O’Brien,
O’Brien, & Mount, 1997). This model differs from the traditional medical model
in its focus on personal abilities versus personal limitations and deficits. The
person-centered planning model iS an attempt to match consumers’ wishes and
aspirations with their abilities and resources. The intention of this planning
strategy is to provide consumer empowerment and personal decision making
(Holbum, Jacobson, & Vietze, 2000). In person-centered planning, therefore, the
consumer is encouraged to be an active (versus passive or unaware) member of
his or her life planning as it relates to decisions involving work, school, life, and
leisure pursuits.

The term “self-determination” is used to support the underlying
philosophy of person-centered planning. This humanistic philosophy, which

guides current services, has emerged over the last 70 years. Prerequisites to this

philosophical approach were advancements in medical technology, increased
knowledge on the part of allied health professionals, and enabling legislation
prohibiting discrimination on the basis of disability, impairment, or illness. In
practice, services for people with developmental disabilities have evolved from
institutionalization to community-based residential accommodations, segregated
training to least restrictive training, childlike play experiences to age-appropriate
activities, service models focusing on treatment to service delivery focusing on
consumer empowerment, and no access to vocational, recreational, or educational
services to full, accommodating, community-based opportunities for people with
disabilities.

Full inclusion is the new social mandate (Scherschligt et al., 1992). Full
inclusion occurs when people with disabilities engage in activities with (versus
next to) able-bodied peers (Smith, Austin, & Kennedy, 1996). The concept Of
normalization ensures that people with disabilities engage in activities in the same
environments as people without disabilities (Wolfensberger, 1975). Similarly,
the social role valorization theory suggests that people must be exposed to
“normal” situations, engaged in activity with people without disability, to learn
normal behaviors and be valued as contributing members of society
(W Olfensberger, 1983; 1995b). However, segregated recreation is reported as the
norm (Anderson & Heyne, 2000), and recent research has indicated that people
with disability are participating in activities that are primarily noninclusive
(APRS/NTRS, 1997). Specifically, Devine (APRS/NTRS, 1997) found that the
majority of people with disability who attend public recreation programs

participate in activities designed Specifically for others with disability. This

behavioral choice is inconsistent with social and legal movements that have
ensured inclusive Opportunities for people with disability, especially when
research also has revealed that the majority of public recreation agencies support
inclusion and make it available upon consumer request (APRS/NT RS, 1997). No
research is available concerning who is making decisions regarding recreation
participation patterns for individuals with disabilities. NO research, to date, has
identified consumers’ preferences for inclusive or noninclusive recreation models
of service delivery.

A review of the available literature indicated that there is adequate support
for the philOSOphical need for inclusion, adequate support from enabling
legislation promoting inclusion (Americans with Disabilities Act of 1990, Pub. L.
NO. 101-336, 104 Stat. 327), and adequate resources describing strategies to
successfully foster the inclusion process (Anderson, Brown, & Soli, 1996; Block,
1994; Block & Etz, 1995; Bork, 1989; Browder & Cooper, 1994; Edwards &
Smith, 1989; Foley, 1979; Richardson, Wilson, Wetherald, & Peters, 1987;
Sable & Gravink, 1995; Scherschligt et al., 1992; Schleien, Rynders, Heyne, &
Taboume, 1995; Smith et al., 1996; Sowers & Powers, 1995; Wehman, 1993;
West, 1984). Yet, the literature appears less adequate With regard to consumer
input into the inclusive process and consumer desire for inclusive recreation
services. Knowing that it is “critical to seek the personal insights Of those most
directly affected by Shifts in social policy” (Wyngaarden, 1981, p. 107) and
knowing that determining individual preferences is a focal point in the person-

centered approach to service delivery (Everson & Zhang, 2000; Reid, Everson, &

Green, 1999) it is critical to ask consumers whether they prefer inclusive or

noninclusive leisure experiences.

Purpose of the Study
My purpose in this investigation was to identify consumers’ and

caregivers’ preferences for inclusive over noninclusive recreation services.
Consumers in this study were people with moderate and mild levels of cognitive
impairment. Consumers’ preferences were compared according to their level of
cognitive impairment, gender, past involvement in inclusive recreation services,
type of residence, and age. In addition, caregivers’ preferences were compared
based on their years of experience as a caregiver, past involvement in inclusive

recreation services, age, and extent of training related to inclusion.

Hypotheses
The following hypotheses, stated in null form, were formulated to guide
the analysis of data in this study. Based on the literature reviewed, Statements of
expected directional outcome were created for each hypothesis.

1. Consumers do not prefer inclusive recreation services over noninclusive
recreation services.

2. There is no difference in consumers’ preferences for inclusive recreation
services, based on level of cognitive impairment.

3. There is no difference in consumers’ preferences for inclusive recreation
services, based on their gender.

4. There is no difference in consumers’ preferences for inclusive recreation
services, based on their past involvement in inclusive recreation services.

5. There is no difference in consumers’ preferences for inclusive recreation
services, based on their type of residence.

6. There is no relationship between consumers’ preferences for inclusive
recreation services and their age.

7. Caregivers do not prefer inclusive recreation services over noninclusive
recreation services.

8. Consumers and caregivers do not differ in their preferences for inclusive
recreation services.

9. There is no difference in caregivers’ preferences for inclusive recreation
services, based on their past involvement in inclusive recreation services.

10. There is no relationship between caregivers’ preferences for inclusive
recreation services and their years of experience as a caregiver.

11. There is no relationship between caregivers’ preferences for inclusive
recreation services and their age.

12. There is no difference in caregivers’ preferences for inclusive recreation
services, based on their extent of training related to inclusion.
Independent Variables
Two types of independent variables were used in this Study: consumer
based and caregiver based. Consumer variables included level of cognitive
impairment, type of residence, past involvement in inclusive recreation
experiences, age, and gender. Caregiver variables were years of experience as a
caregiver, past involvement in inclusive recreation experiences, age, and extent of

training related to inclusion.

Dependent Variables
The dependent variables in this study were consumer preference and
caregiver preference for inclusive recreation services. Analyses were carried out
to determine whether there was a relationship between the dependent variables

and independent variables.

Delimitations
The sample for this investigation was delimited to individuals with
diagnoses of moderate and mild levels of mental retardation with no sensory
impairments that would inhibit their ability to respond to interview questions.
Specifically, persons who were interviewed had a diagnosis of either moderate or
mild mental retardation (or an intelligence quotient range from 36 to 70). The
study sample was further delimited to individuals residing in the mid-Michigan

area.

Limitations

The sample comprised people residing in the mid-Michigan area. This
sample of people with disability was not culturally diverse, which will limit the
generalizability of the investigation results tO a more culturally diverse population
Of people with disability. Sample Size (i.e., 62 consumers, 46 caregivers) may
negatively affect the generalizability of the results especially those results related
to gender and place Of residence. Convenience versus random sampling was used
when interviewing consumers with mental retardation and their caregivers. This
biased sampling technique may negatively affect validity and may limit the
generalizability of the investigation results. In addition, the tool used in the
investigation showed inclusive recreation activities in which two to three people
with disability were engaged. The limited number of people Shown in the tool
will limit the generalizability of the results to programs involving greater numbers

of people. Finally, because it is well documented that individuals with mental

retardation have a greater than average rate of acquiescence, the potential for

acquiescence may negatively affect the validity and reliability of the results.

Basic Assumptions

In conducting this Study I assumed that: (a) the theories of normalization
and social role valorization apply to all aspects Of life and therefore apply to
leisure lifestyle and leisure participation patterns; (b) persons with diagnoses Of
moderate or mild levels of mental retardation are valid sources Of information
about their preferences for services (Wyngaarden, 1981); (c) persons with
diagnoses of mental retardation are the most appropriate sources of information
about their life and satisfaction with life activities (Wyngaarden, 1981); (d)
interviewing people with mental retardation is a viable method of data collection
(Malik, Ashton-Shaeffer, & Kleiber, 1991); and (e) caregivers understand the

operational definition of inclusion.

Operational Definitions
The following terms are defined as they were used in this study.
Accessibility -— The degree to which a program, facility, or position is
available or Open to a person with a disability (Burlingame & Skalko, 1997).
Accommodation -- Making the environment or service easy to use or
accessible by a person with a disability (Burlingame & Skalko, 1997).
Acquiescence -- The tendency of people to respond “yes” to questions,

regardless of the content (Sigelman, Budd, Spandel, & Schoenrock, 1981b).

Caregiver — A parent or attendant who cares for and knows an individual
with moderate or mild developmental disability (Sigelman, Budd, Winer,
Schoenrock, & Martin, 1982).

Developmental disability -- A variety of chronic, long-term conditions that
emerge or are present during childhood and interfere with normal patterns of
growth and development (Burlingame & Skalko, 1997; Yamamoto, 1993).

Inclusion -- In any life activity, the “equal and joint participation of
persons with and without disabilities” (Smith et al., 1996, p. 12).

Inclusive recreation -- Recreation services that foster both physical and
social interaction of persons with and without disabilities. The person with
disability engages in recreation activity directly with (versus beside) a person
without disability (Smith et al., 1996; Wolfensberger, 1972).

Integration -- Provision of services in the most normative environment
possible (Austin & Crawford, 1996; Wolfensberger, 1972).

Mainstreaming — A process of service delivery that focuses on Skill
acquisition to facilitate the involvement of persons with disability in activities
with people without disability (Smith et al., 1996).

Mild mental retardation -- A diagnostic condition characterized by an
individual exhibiting an IQ Of between 50 to 55 and 70, with adaptive behavior
deficits in social Skills and advanced executive functioning (American Psychiatric
Association [APA], 1994; Burlingame & Skalko, 1997).

Moderate mental retardation -- A diagnostic condition characterized by an

individual exhibiting an IQ of between 35 to 40 and 50 to 55, with adaptive

behavior deficits noted in social skills, community safety Skills, physical
endurance, coordination and Strength, advanced activities of daily living, and
leisure Skills (APA, 1994; Burlingame & Skalko, 1997; Yamamoto, 1993).

Noninclusive recreation -- Recreation programming delivered with the
primary intention of serving only people with disabilities (Broida, 1995).

Normalization -- providing services in environments and under conditions
that follow cultural norms (Anderson & Greer, 1976; Phillips, 1992;
Wolfensberger, 1972).

Social role valorization -- The perception that people are valued by their
social roles (Wolfensberger, 1983).

Special recreation services (Specialized or noninclusive) -- Recreation

programs offered specifically for persons with disabilities (Broida, 1995).

Overview
Chapter 1 was an introduction to the study and a statement Of the problem
underlying the research. The purpose of the study was set forth, and the
hypotheses were Stated. The Study delimitations, limitations, basic assumptions,

and Operational definitions were provided for increased clarity.

10

CHAPTER II

Literature Review

Introduction

My purpose in thiS investigation was to identify consumers’ and
caregivers’ preferences for inclusive over noninclusive recreation services.
Consumers in this study were people with moderate and mild levels of cognitive
impairment. This chapter contains a review of the literature. Topics that are
discussed are: (a) developmental disabilities and mental retardation; (b)
theoretical aspects influencing service delivery; (c) social role valorization theory;
(d) legislative influence; (6) recreation preferences of people with developmental
disability; (f) perceived barriers to leisure participation and inclusive recreation
services; (g) perceptions of service providers, peers, and consumers toward
inclusive recreation services; (h) perceived value of inclusive and special
recreation services; (i) strategies to foster inclusive recreation services; (j)
empowerment, personal choice, and decision making of persons with disability;

and (k) interviewing persons with mental retardation.

Developmental Disabilities and Mental Retardation
Developmental disabilities are defined as a group of chronic, long term
conditions that are present during childhood and interfere with normal patterns of
growth and development (Burlingame & Skalko, 1997; Yamamoto, 1993).
Developmental disabilities comprise, but are not limited to, such diagnoses as

mental retardation, cerebral palsy, autism, learning disability, spina bifida,

ll

epilepsy, and muscular dystrophy (Yamamoto, 1993) and affect 1% to 3% of the
population of the United States (President’s Committee on Mental Retardation
[PCMR], 1997; University of Maryland Medicine, 2001).

The largest clinical group Of individuals diagnosed as having a
developmental disability are those with mental retardation (Yamamoto, 1993).
To be diagnosed as mentally retarded, a person must exhibit significant
subaverage intellectual functioning, existing concurrently with deficits in adaptive
functioning, manifested before18 years Of age (APA, 1994). The primary
symptom of mental retardation is the failure to meet various age-related
intellectual markers (University of Maryland Medicine, 2001). A person
classified as mentally retarded will score 70 or less on a standardized intelligence
test (APA, 1994; University of Maryland Medicine, 2001) and have deficits in
adaptive functioning. Adaptive Skills are those age-related behaviors that
demonstrate an individual’s competence in personal independence and social
responsibilities (APA, 1994). Adaptive Skills that are problematic for people with
mental retardation include communication, self-care, health and safety, self-
direction, academics and/or learning, community access, and social, vocational,
and leisure skills (American Association on Mental Retardation [AAMR], 2001;
University of Maryland Medicine, 2001).

There are four levels of mental retardation (mild, moderate, severe, and
profound), which are defined according to cognitive and adaptive behavior
deficits. The great majority (95%) of people with mental retardation display mild

or moderate levels of cognitive impairment, whereas the remainder (5%)

12

experience more severe levels of cognitive and adaptive behavior deficits (APA,
1994).

Persons diagnosed with mild mental retardation will obtain a score
between 50-55 and 70 on an intelligence test and display adaptive behavior
deficits in social Skills and executive functioning (APA, 1994; Burlingame &
Skalko, 1997). On the other hand, persons diagnosed with a moderate level of
cognitive impairment will have an IQ between 35-40 and 50-55, with adaptive
behavior deficits in social Skills, community safety, physical endurance,
coordination, strength, advanced activities of daily living, and leisure (APA,
1994; Burlingame & Skalko, 1997; Yamamoto, 1993).

Persons clinically diagnosed as severely mentally impaired will have an
IQ between 20-25 and 35-40 and will display more significant adaptive behavior
deficits in Speech and language, self-care Skills, independent living Skills,
spontaneous play Skills, and motor development (APA, 1994; Burlingame &
Skalko, 1997; Yamamoto, 1993). Persons who are severely mentally impaired
may also exhibit self-stimulating or self-injurious behaviors (Yamamoto, 1993).

Finally, persons diagnosed with profound mental retardation will have an
IQ below 20 or 25 and will require Significant supervision or be dependent on
Others for their personal needs (APA, 1994; Yamamoto, 1993). Persons
diagnosed with profound mental retardation will display poor sensory-motor
Skills, minimal to no speech and language, and deficits in environmental
awareness, self-awareness, and safety Skills. People with profound mental
retardation often are multi-handicapped, displaying extremes in motor functioning

(hypo or hyper tone) as well as the Significant cognitive deficits.

l3

Mental retardation can be caused by genetic and chromosomal
abnormalities, infectious agents, trauma, metabolic disturbances, toxicity,
nutritional issues, and other environmental influences (University of Maryland
Medicine, 2001; Yamamoto, 1993). The causative factors occur during the
prenatal, perinatal, or postnatal periods of life (Yamamoto, 1993). However, the
residual deficits must hinder cognition and adaptive functioning before a person’s

18th year (Yamamoto, 1993; APA, 1994).

Theoretical Aspects Influencing Service Delivery

During the early 1970s, services for individuals with mental retardation
began to Shift from a custodial model of service delivery to one focused on
training and habilitation (Bullock & Mahon, 1997). This emerging philosophy
was intended to provide services that improved functioning and maximized a
person’s level of independence (Burlingame, Blaschko, & Skalko, 2001). The
intention of training was to develop the skills necessary to actively engage in and
be accepted as part of a community. Wolfensberger (1995a) suggests that
individuals with disabilities are not valued members of their community unless
they look, behave, and act in manners Similar to those without disabilities.
Today, the social mandate is to provide services that facilitate inclusion.
Inclusion occurs when individuals with disability engage in activities with (versus
beside) individuals without disability (Smith et al., 1996 ).

Since the 19703, the literature has presented trends in service delivery
intended to foster inclusion. The concept of inclusion had its origin in the

principles of normalization, mainstreaming, and integration. The following

14

paragraphs provide an overview of these concepts and, where necessary, their
application to recreation services. ’

Normalization is defined as the “utilization of means which are as
culturally normative as possible, in order to establish and/or maintain personal
behaviors and characteristics which are as culturally normative as possible”

(W olfensberger, 1972, p. 28). In other words, if people with disabilities are
exposed to “normal” situations, this will facilitate “normal” responses or
behaviors (Phillips, 1992). The principle of normalization emphasizes that people
with disabilities should live a near- “normal” existence. Therefore, normalization
emphasizes the right for people with disabilities to live in a family environment,
and to work, attend school, and engage in community and leisure activities with
persons without disabilities (Anderson & Greer, 1976).

Mainstreaming is concerned with the individual’s opportunities, Skills,
and potential to engage in activities with the majority of society. Mainstreaming
is considered a process of service delivery ensuring least restrictive environments
based on the competencies of the person with disability (Smith et al., 1996).
Mainstreaming suggests a progressive order of skill development, enabling the
person with disability to obtain the prerequisite skills deemed necessary for full
participation in activity with able-bodied peers. In recreation, programs designed
to foster mainstreaming would teach the individual with disability the physical
and social skills necessary to engage in activity with able-bodied peers.

Integration is described as the “practices that maximize a person’s
potential in the mainstream of society” (Austin & Crawford, 1996). Individuals

with disability are referred to as integrated when they engage in activity in the

15

same environments as people without disability. Wolfensberger (1972) divided
integration into two categories: physical integration and social integration.
Physical integration involves the environmental factors that influence the success
of the experience (e.g., facility access, facility location, number of persons with
disability at the same location). Social integration is concerned with the potential
social exchanges that are facilitated through participation in an activity
(Wolfensberger, 1972). It is the social-integration component that Wolfensberger
(1972) believed was most critical to inclusion.

Inclusion, as it relates to recreation services, is defined as “the general
provision of access to recreation Opportunities by persons with disabilities”
(Smith et al., 1996, p. 11). The intention of inclusive recreation services is to
provide “equal and joint participation of persons with and without disabilities”
(Smith, etal., 1996, p.12). Dattilo and Jekubovich-Fenton (1995) suggested that
inclusive recreation allows for freedom of choice, adequate support and being
valued as a member Of a group or activity. Vaughan and Winslow (1979)
reported that inclusion occurs in the least restrictive environment possible,
enabling the person with a disability to engage in activity with able-bodied peers
under the instruction of a non-special population program director. Additionally,
the literature repeatedly reflects the need for social interaction (beyond just
physical access) as a necessary component to inclusion (Wolfensberger, 1972;
Dattilo & Schleien, 1994; Smith et al., 1996). Furthermore, inclusive experiences
are reported as critical components to a satisfying leisure lifestyle (Sneegas, 1989;

Taylor, Kagay, & Leichenko, 1986).

16

Social Role Valorization Theory

Wolfensberger (1983) suggested two Strategies to change the public
perception and valuing of persons with disabilities; these are “enhancement of a
persons ‘Social image’ or perceived value in the eyes of others, and . . .
enhancement of their ‘competencies’” (p. 236). As stated previously,
mainstreaming is an attempt to enhance competencies, whereas normalization,
integration, and inclusion are attempts to alter the perceptions people have toward
individuals with disabilities. Wolfensberger (1983) suggested that the “most
implicit and highest goal of normalization must be the creation, support, and
defense of valued social roles for people who are at risk of social devaluation” (p.
234). Therefore, he suggested a name change from the principle of
normalization to the social role valorization theory. Social role valorization
theory is a perceptual theory that suggests that people are valued according to
their social roles (Wolfensberger, 1983). If a person’s social role is valued, that
person will be valued by society. Furthermore, Wolfensberger (1995a) suggested
that it is possible to forecast probabilities in relationship behavior if an action is
taken or omitted. This action-versus-outcome theory can be applied to persons
with disabilities participating in recreation programs, as Wolfensberger (1995a)
demonstrated in the following “if this, then that” scenarios:

If one congregates devalued people together in numbers that are too large

for the social systems around them to relate to and assimilate adaptively,

then one will probably reap rejection, hostility, and efforts at segregation

from these larger social systems. . . . If certain people view and treat

handicapped adults as eternal children, then such handicapped adults had

probably earlier been interpreted as big children, Observed in childish

activities and routines, seen clothed and groomed as children, or heard

addressed as children. . . . If one wants handicapped adults to be seen and
treated as adults, then at least in the sight of others, one must be prepared

17

to engage them in adult activities and routines, perhaps to the maximum

degree possible. . . . If one wants devalued people to be [more] accepted

and better integrated in society, then one may have to do things that enable
them to have positive appearances and to not have repugnant personal

habits. (pp. 164 - 166)

Upon reviewing the theory of social role valorization, it appears necessary
to provide recreation opportunities that are age appropriate and ensure that
persons of Similar age engage in activity together. The environments in which
leisure activity are carried out should be community based and in the same
facilities as those frequented by able-bodied peers. People with disability should
have opportunities to engage in activity with people without disability. In
addition, leisure activities should facilitate social interactions and social
exchanges between people with and without disability.

However, it has been reported that the great majority of consumers with
disability attend noninclusive Special recreation programs even though most
agencies reportedly support inclusion (APRS/NT RS, 1997). Once again, if
people with disability are to be valued for their abilities (versus disabilities),
theoretically programs must be provided that are inclusive in nature. Yet, the
literature does not offer insights as to why people with disability choose to
participate in activities with others with disability. Nor does the literature offer
insights into consumers’ preferences concerning inclusion as it relates to

participation in recreation. To support inclusion, recreation professionals must

know the preferences of consumers.

l8

Legislative Influence

To ensure the provision of normalization, mainstreaming, integration, and
inclusion enabling legislation has been passed to facilitate these social reforms.
In the United States, four primary legislative acts have affected the provision of
inclusive opportunities for people with disabilities. These acts have focused on
the provision of education, the assurance of rehabilitation, the elimination of
discrimination or attitudinal barriers, and the removal of architectural barriers.
Therefore, these acts serve as “the impetus to foster inclusion of persons with
disabilities in all critical areas of life” (Zoerink & Rosegard, 1997, p. 19).

PL 90-480 of 1968 was the first act mandating the elimination of
architectural barriers for persons with physical disabilities. This law, most
commonly referred to as the Architectural Barriers act of 1968, “assured that
certain buildings financed with Federal funds are so designed and constructed as
to be accessible to the physically handicapped” (Pub. L. NO. 90-480, 82 Stat).
When this law was passed, the term accessible meant approachable, obtainable,
capable of being entered, or easy to reach (Kennedy, Austin, & Smith, 1987).
Therefore, the intention of PL 90—480 was to ensure physical access to facilities
for people with physical disabilities. This law affected only those organizations
receiving federal funding or assistance. Because most public recreation services
receive some federal assistance, this legislation mandated the removal of
architectural barriers through significant facility modifications (remodeling) or
barrier-free design with new construction.

As time passed, the federal government determined that further measures

were necessary to ensure enhanced rights for people with disabilities. Therefore,

19

federal legislators passed PL 93-112, the Rehabilitation Act of 1973. This act is
often referred to as the “handicapped civil rights act” because it prohibited
discrimination from participation in programs on the basis of handicapping
condition (Kennedy et al., 1987). Section 504 of this act had the greatest effect
on integrative services, stating that “No otherwise qualified handicapped
individual . . .Shall, solely by reason of his handicap, be excluded from the
participation in, be denied the benefits of, or be subjected to discrimination under
any program or activity receiving Federal financial assistance” (Pub. L. No. 93-
112, 87 Stat). This legislation, in comparison to PL 90-480, defined disability to
include but not be limited to “conditions such as: orthopedic, visual, speech, and
hearing impairments, cerebral palsy, epilepsy, muscular dystrophy, multiple
sclerosis, cancer, heart disease, diabetes, mental retardation, emotional illness,
drug addiction, and alcoholism” (Commission on Civil Rights, 1983, p. 8). This
legislation was further revised in 1978 (PL 95-602), providing financial assistance
for program development and training of staff to provide recreation services for
people with disabilities (Zoerink & Rosegard, 1997).

In 1975, the Education for All Handicapped Children Act was passed by
the 94th Congress. This act, commonly referred to as PL 94-142, ensured free
and appropriate education to children, adolescents, and young adults with
disabilities. The language of PL 94—142 included the provision of both special
education and related services (Pub. L. No. 94-142, 89 Stat. 773). Related
services are interpreted as those services that enhance a student’s academic skills
and assist in maximizing his or her functional level. Recreation services are

identified in this legislation as a related service. PL 94-142 further defined

20

recreation to include “assessment of leisure functioning, . . . therapeutic recreation
services, . . . recreation programs in schools and community agencies, and . . .
leisure education” (Petrovello & Sullivan, 1989, p. 29). Through the
identification and definition of recreation as a related service, the 94th Congress
provided the opportunity for recreation to become a component of a child’s
individual educational plan and a component of the school curriculum for
Students with special education needs (Coyne & Rics, 1980). Even though these
services can be offered in either a segregated (self-contained) or integrated
environment, PL 94-142 “mandates that each child . . . participate with non-
handicapped children in non-academic and extra-curricular services and activities
to the maximum extent appropriate for that child” (Coyne & Rics, 1980, p. 4),
thus encouraging the provision of inclusive education, extra-curricular activities,
and recreation services.

In 1990 PL 94-142 was retitled as the Individuals with Disabilities
Education Act (IDEA, PL 101-476). The 1990 amendments emphasized full
inclusion and assured a greater school emphasis in preparing students for life
transitions following graduation. Recreation services were maintained as
appropriate related services to include assessment of leisure functioning, leisure
education, therapeutic recreation, and recreation within the school and community
(Bullock & Johnson, 1998). Therefore, recreation services were continued as a
possible component of a students’ educational plan to augment or enhance the
educational process in the most inclusive setting possible. The Individuals with
Disabilities Education Act continued to be amended and in1997 the focus of such

amendments included a greater focus on individual performance outcomes,

21

increased access to the general education curriculum, strengthened role of parents
and students with disabilities, increased involvement by regular education
teachers, and, whenever possible, implementation of Special education and related
services within regular education classrooms (Pub. L. No. 105-17). Therefore,
legislation that was initially intended to provide educational opportunities for
individuals with disabilities had evolved to assure individual competency,
empowerment, transition services, and a right to educational and related services
in the most inclusive environments possible.

In 1990, due to continued awareness of the need to strengthen legislation
protecting people with disabilities from discrimination, the 101“ Congress passed
the Americans With Disabilities Act (ADA), PL 101-336 (Satcher & Dooley-
Dickey, 1991). The primary purpose of this legislation was “to provide a clear
and comprehensive national mandate for the elimination of discrimination against
individuals with disabilities” (Pub. L. No. 101-336, 104 Stat. 327). Specifically,
this legislation indicated that “no qualified individual with a disability shall, by
reason of such disability, be excluded from participation in or be denied the
benefits of the services, programs, or activities of a public entity, or be subjected
to discrimination by any such entity” (Pub. L. No.101-336, 104 Stat. 327).
Furthermore, this legislation defined “public entities” as private enterprises used
by the public, including such recreational facilities as “a motion picture house,
theater, concert hall, stadium, or other place of exhibition or entertainment; . . . an
auditorium, convention center, lecture hall, or other place of public gathering; . . .
a museum, library, gallery, or other place of public display or collection; . . . a

park, zoo, amusement park, or other place of recreation; . . . a gymnasium, health

22

spa.
N0.

W itl

bu‘.

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spa, bowling alley, golf course, or other place of exercise or recreation” (Pub. L.
No. 101-336, 104 Stat. 327). The intention of the ADA was to “bring persons
with disabilities into the economic and social mainstream of American life”
(Scherschligt et al., 1992, p. 8).

Legislation has supported social reforms that ensure not only accessibility
but full accommodations for persons with disabilities. Since 1968, legislation has
evolved from simply removing barriers to full-service accommodations for all
people with disabilities. The presence of such legislation supports the theories of
normalization and, to a degree, social role valorization, which ultimately foster
mainstreaming, integration, and full inclusion. However, even though theories
and legislation have supported a movement for full inclusion of people with
disability, there is little or no evidence that people with disability prefer inclusive
over noninclusive recreation services. Thus, there was a need to ask consumers

directly whether they prefer inclusive over noninclusive recreation opportunities.

Recreation Preferences of People With Developmental Disability

Social reforms and legislation have supported the formation of policies
designed to empower people with disability in decision making related to life,
work, and leisure pursuits. Therefore, it is appropriate to explore the activity
preferences of people with developmental disability. The purpose of this section
is to present the results of empirical research on leisure preferences and leisure
behavior of people with developmental disability.

Sparrow and Mayne (1990) interviewed 40 adults with mild levels of

mental retardation to determine their current and ideal recreation participation

23

patterns. The investigators found that most participants recreated by self (44%),
with friends (37%), and, to a lesser extent, with family members (19%).
Similarly, the researchers found that nearly 50% recreated at home, 35% in the
community, and 17% sought recreation activity through their place of
employment. Per self report, the subjects indicated they engaged most in hobbies
and pastimes (49%), followed by indoor activities (35%), health and fitness
activities (18%), outdoor recreation (11%), team sports (10%), and, to a lesser
extent, individual sports (3%) and aquatic activity (3%). Comparatively, the
participants reported they ideally would like to participate in sports (50%), fitness
activities (43%), outdoor pursuits (37%), and aquatic activities (36%). Finally,
the majority of participants supported involvement in both indoor recreation
activities (67%) and hobbies (73%).

Malik (1990) interviewed 19 adults with mild and moderate levels of ’
mental retardation. These interviewees were part of a larger observational study
on the leisure behavior of residents of group homes residing in Illinois. All
people interviewed were 18 years of age or older and were involved in a day
activity or work-related day program. Participants were asked to respond to a
total of 29 questions (15 closed ended, 14 open ended) over a period of 30 to 45
minutes. It was noted that some of the interviewees had difficulty completing the
interviews secondary to issues with distractability and attending. When
respondents were asked what activities they liked to do when they were alone,
they indicated they listened to music, watched television, put on make-up, looked
at scrapbooks, read the Bible or a magazine, went for walks, or cleaned their

rooms. When respondents were asked what they liked to do when they were with

24

others, they stated that they liked to visit with friends, watch television, go to the
mall, play sports, or go to the movies. The investigator also asked respondents
whether they were aware of or had heard of the terms recreation and leisure. The
majority (75%) had never heard the term leisure. Those who said they had heard
of leisure were unable to define this term. Similarly, 65% of those interviewed
had never heard the term recreation. Therefore, Malik concluded that when
interviewing persons with cognitive impairment about leisure behavior,
interviewers should use familiar terms such as fun versus recreation or leisure.

Dattilo and Hoge (1995) interviewed 100 adults with mild to moderate
cognitive impairments. Of those interviewed, the majority were single (n = 92),
male (n = 65), 20 to 29 years of age (n = 46), and lived at home with their
families (n = 63). Open-ended questions, with supportive prompting, were used
to learn respondents’ leisure preferences, as well as barriers and constraints to
their leisure participation. The results of this qualitative study indicated that
respondents preferred isolated activities such as watching television or videos and
listening to music. When participating in activities with others, participants
indicated they preferred being with friends, bowling, crafts, hobbies, yardwork,
shopping, playing baseball and basketball, biking, swimming, pet care, and going
for walks.

In summary, the reviewed literature indicated that persons with cognitive
impairment engage primarily in indoor and solitary activities. However, people
with cognitive impairment have reported an interest in engaging in community-

based activities and activities with others (e. g., bowling and team sports). Yet,

25

the literature was unclear about whether people with cognitive impairment prefer
to engage in any activity with people with or without disabilities.
Perceived Barriers to Leisure Participation
and Inclusive Recreation Services

AS professionals attempt to facilitate compliance with legislation, social
mandates, and personal choice, it iS necessary to become familiar with those
factors that restrict people with disabilities from actively participating in leisure
activities or services. A focus on identifying and eliminating barriers is at “the
heart of the efforts to integrate persons with disabilities” into the mainstream of
recreation activity (Thiboutot, Smith, & Labanowich, 1992, p. 284). Research on
the barriers that people with disabilities experience as they attempt to access
community—based recreation services is reviewed in this section. Barriers

identified by both consumers and agencies are discussed.

Barriers that Influence Participation by Individuals

In the 1986 Harris Poll, completed by Taylor et al., 1,000 people with
disabilities were asked their perceptions of mainstreaming. Results related to
leisure indicated that people with disabilities went to the movies, cultural events,
music performances, and sporting events far less than adults without disabilities.
This Study indicated that people with disabilities also were less likely to Shop in a
grocery store, dine out, or be involved in community activities including
religious, volunteer, or recreation groups. Survey results indicated that 56% of
those sampled reported that their disability prevented them from attending

cultural or Sporting events, or socializing with friends outside of their home. Low

26

income status was also reported as negatively affecting respondents’ social life
and mobility. Additional barriers prohibiting people from fully participating in
life included a fear of barriers, dependency on others, lack of accessible
transportation, restricted access to public buildings and public restrooms, and
self-conscious behaviors related to their disability. Finally, perception of life
satisfaction and disability were compared. Only 69% of persons with disabilities
reported that they were somewhat or very satisfied with life, compared to a 90%
satisfaction rate among persons without disabilities. The results suggest that lack
of participation in social and community activities reduces life satisfaction.
Fourteen years later, nearly 1,000 people were sampled in the Harris
Survey on Americans with Disabilities (National Organization on Disability
[NOD], 2000). It was found that individuals with disabilities still were be less
likely to go to the mall, or to attend movies, concerts, sporting events, and other
cultural activities as compared to their able-bodied peers. Further, people with
disabilities were less likely than those without disabilities to socialize routinely
with friends, family, and neighbors. However, improvement was noted in this
survey because it identified that young adults with disabilities (aged 19 to 29)
were more likely to dine out and socialize with others as compared to their
nondisabled peers (90% compared to 89%). Nonetheless, people with disabilities
continued to report that they experienced less life satisfaction as compared to
peOple without disabilities. Specifically, only 33% of those with disabilities
reported that they were very satisfied with life, as compared to 67% of those

without disabilities. These data suggest that people with disabilities continue to

27

experience constraints inhibiting their leisure participation and that lack of leisure
involvement (among other things) inhibits life satisfaction.

In an empirical Study, West (1984) examined the relationship between
attitudinal barriers and community recreation participation patterns of persons
with disabilities. One-hundred eighty (180) people with a diagnosis of mental
retardation, mental illness, or physically disability, were interviewed to determine
the degree to which negative affective responses (e.g., staring, teasing, name
calling, sympathy) influenced their leisure participation. Nearly 52% of those
interviewed indicated that they experienced negative responses from people when
they engaged in community activities. Results suggested that persons diagnosed
as mentally retarded or blind experienced greater negative reactions (while in
parks) than persons with other physical disabilities or mental illness. West also
found that the use of parks by persons with disabilities declined following
experiences of negative affective responses or social stigma.

Sparrow and Mayne (1990) interviewed 40 adults with mild cognitive
deficits to investigate their current patterns of recreation participation, constraints
to recreation participation, and ideal recreation pursuits. Major constraints
identified by participants that inhibited their participation in community-based
recreation programs included lack of opportunity (65%), lack of transportation
(58%), financial constraints (58%), lack of activity skill (55%), unavailable
facilities (53%), and attitudinal barriers (50%). To a lesser extent those
interviewed indicated that they did not engage in recreation activities due to time

constraints (5%) and gender stereotyping (3%).

28

Hawkins, Peng, Hsieh, and Eklund (1999) assessed the leisure constraints
of 118 adults with moderate and mild levels of mental retardation. The
investigators used a modified version of the leisure constraints section of the
Leisure Assessment Inventory (Hawkins, Ardovino, & Hsieh, 1998) as their
research tool. The Leisure Assessment Inventory uses forced-choice, either-or
questioning, supported by pictorial cues to manage common issues of
acquiescence when questioning people with mental retardation. Results of this
investigation revealed the following top10 reasons why people with mental
retardation did not engage in recreational activity of choice: (a) lack equipment
(90%); (b) lack skill (89%); (c) lack decision-making power related to leisure
pursuits (79%); (d) engage in activities only with friends (74%); (e) lack available
instruction (53%); (f) no access to facilities (52%); (g) lack transportation (47%);
(h) lack finances (45%); (i) fatigue (44%); and (i) have no available partner
(44%). As documented in previous literature, Hawkins et a1. identified both
Structural and interpersonal constraints that people with mental retardation must
negotiate before engaging in leisure activities of choice. This research also
suggested that a lack of empowerment by individuals with cognitive impairment
hindered the individuals’ ability to engage in activities of choice.

Verpillot and Dattilo (1995) completed face-to-face interviews with 11
individuals with mental retardation to explore the constraints associated with their
leisure choices. The 7 males and 4 females they interviewed had diagnoses of
mild cognitive impairments and were 21 to 65 years of age. The results of the
interviews suggested that many consumers lacked awareness of leisure resources

and therefore allowed others to make decisions related to free-time activities. In

29

addition, those interviewed reported that their mothers were individuals who most
frequently restricted leisure participation. Many interviewees also reported
frustration with the lack of personal control and decision making related to their
leisure time. This investigation, although limited in sample size and specific hard
data, suggests that individuals with developmental disabilities have the desire to
be empowered to learn and participate in leisure activities of their own
preferences and choices.

Barriers That Limit the Provision of Services

by Recreation Agencies

Individuals as well as agencies experience barriers in the provision of
recreation services for people with disabilities. Literature regarding the
challenges encountered by agencies in attempting to provide recreation
opportunities for people with disabilities is reviewed in this section..

Logan (1970) sampled 122 public agencies to determine the factors
responsible for limiting or not providing recreation programs to people with
disabilities. Agencies surveyed included municipal recreation departments (n =
12), commercial recreation facilities (n = 39), youth programs (n = 6), churches
(n = 38), fraternal and service groups (n = 17), and schools (n = 10). From this
study Logan concluded that architectural barriers, limitations based on disability,
finances, nonacceptance by people without disability, parental anxieties,
inexperienced staff, logistics (e. g., scheduling conflicts), and transportation were
the primary to providing public recreation programs to people with disabilities.

Schleien, Germ, and McAvoy (1996) surveyed 484 community leisure

service agencies to determine, in part, perceived barriers to inclusive services. Of

30

the agencies surveyed, only 17% of urban agencies and 29% of rural agencies
reported that they did not offer inclusive services. All respondents indicated that
the most significant barriers to inclusive programming were financial constraints
(50%) and Staffing constraints (48%). Less frequently, agencies reported
transportation (36%), architectural barriers (30%), the program itself (29%),
public attitude (13%), and poor administrative support (13%) as barriers to
providing inclusive services.

Germ and Schleien (1997) completed an investigation involving
interviews of 484 persons from 13 community leisure service agencies.
Participants were asked to identify their perceived barriers to participation in
inclusive recreation services. Survey participants were consumers,
administrators, program staff, or volunteers. All groups identified the following
types of barriers: financial (from both consumer and agency constraints),
attitudinal (e.g., instructors fearing people with disabilities, public attitude, and
volunteers not establishing friendships with people with disabilities),
architectural, transportation, and programmatic (e.g., inadequate activity choices
for people with significant disability, lack of inclusive recreation programs for
adults and teens with disability, and scheduling conflicts).

Devine and Kotowski (1999) surveyed 369 municipal park and recreation
agencies in 47 States concerning the barriers encountered in providing of inclusive
recreation services. The majority of agencies (80%) reported that their greatest
barriers were lack of financial resources and staffing constraints (e.g., lack of
transportation, adaptive equipment, and community resistance). Seventy-eight

percent of the agencies also reported that a lack of qualified Staff inhibited their

31

ability to provide inclusive opportunities. Finally, negative Staff attitude and too
much demand for inclusive services also were identified as issues that contributed
to the problems encountered in attempting to provide inclusive services.

Despite legislative and social mandates, barriers to recreation participation
and inclusion continue to exist for people with disability. Consumers have
reported that transportation, finances, leisure Skills, personal attitudes, their
disability, lack of partners, and empowerment are barriers to leisure participation.
Practitioners have identified that staff training, transportation, finances, attitudes,
and agency goals inhibit equal recreational opportunities for people with
disabilities.

Perceptions of Service Providers, Peers, and Consumers
Towards Inclusive Recreation Services

As identified in previous research, the attitudes of participants and others
are barriers to participation in leisure services for individuals with disabilities.
Thus, these attitudes can positively or negatively attempts to provide recreation
services that are inclusive. This section contains a review of the literature related
to attitudes of service providers, caregivers, consumers, and peers with regard to

inclusive recreation services.

Perceptions of Service Providers

Dickinson (1980) sampled 100 recreation administrators employed within
the State of Pennsylvania to investigate their attitudes toward mainstreaming. At
the time of the study, mainstreaming was referred to as the provision of

community-based recreation services to people with disabilities, with no

32

qualifying factors for the provision of segregated or inclusive experiences.
Results indicated that administrators identified positive attitudes among
recreation administrators toward mainstreaming people with disabilities.
However, raw data regarding the actual provision of services did not match the
positive attitudes of administrators toward mainstreaming. Specifically,
administrators from 53% of the agencies sampled indicated they provided
services to 50 or fewer people with disability, 24% served 50 to 100 people with
disabilities, 16% served 100 to 200 people with disabilities, and only 7% reported
that their agencies served 201 to 300 people with disabilities.

More recently, Anderson, et al. (1996) surveyed the attitudes of public
recreation professionals following training seminars on inclusive recreation
services. Fifteen 3-hour training sessions were provided over a 2-year period of
time. The unique feature of this program was that it used an interactive video
network system to facilitate a training program to 150 practitioners throughout
North Dakota. Pre- and posttesting of practitioners’ attitudes toward persons with
disabilities was measured using the Attitude Toward Disabled Persons Scale
(ATDP) and the Integration Knowledge Scale. Results indicated that
participants’ Si gnificantly increased their positive attitudes towards people with
disability following this 45-hour training session. Thus, it was concluded that
education and training regarding inclusion can foster positive attitudes toward the

inclusive process and toward people with disabilities.

33

Perceptions of Peers

Block and Malloy (1998) used the Attitudes Towards Integrated Sports
(ATIS) scale to assess the perceptions of peers, coaches, and parents related to the
inclusion of children with disabilities in a fast-pitched softball league for girls 10
to 12 years of age. The ATIS is a modified version of the Children’s Attitudes
Towards Integrated Physical Education-Revised (Block, 1995a), a validated
instrument that is used to assess the attitudes of grade school children toward
inclusive physical education. Eighty-eight players from nine teams, 5 coaches,
and 28 parents participated in this Study. The results of this preliminary study
suggested that players without disabilities favored the. inclusion of a person with a
disability into the mainstream of their softball league or team. The players agreed
to extensive rule modifications for the person with disability, including allowing
her to use a tee to bat, allowing shortened baselines, and allowing all fielders to
sit while the person with a disability was at bat. It should additionally be noted
that the majority of players (85%) did not think that the player with a disability
should play in a Sports program associated with the Special Olympics or any other
segregated sports program. The majority of participants in this study (72%) said
they had joined this fast-pitched softball league to have fun, whereas a minority
of participants (7%) indicated they participated for the competition. Similarly,
parents were favorable toward a person with a disability participating in fast-
pitched softball and subsequent rule modification. However, 50% of the parents
thought that a child with a disability Should play in a separate Sports programs
(such as the Special Olympics). On the other hand, the coaches’ attitudes toward

inclusion of a child with a disability in this sports league were Split. Two of the

34

five coaches responding indicated that no rule modifications should be made, and
the majority of coaches indicated that such a child should participate in a special
sports league for people with disabilities.

In summary, attitudes toward inclusive recreation services vary among
consumers, caregivers, and peers. On the basis of the reviewed literature, it
appears that the majority of peers and consumers are in favor of an inclusive
recreation program even when Si gnificant rule modifications are necessary to
ensure participation by persons with disabilities. On the other hand, it appears
that caregivers and providers of services are split in their perceptions of inclusion,
some supporting inclusive services and others indicating they prefer separate
services or competitive opportunities for people with disabilities. The literature
also indicates that education and training enhance people’s perceptions of a those

with disabilities.

Perceived Value of Inclusive and Special Recreation Services

In addition to self-perception and personal insights into the value of
inclusive versus Special recreation services, one must explore the empirical
research supporting the benefits of inclusive services. This section contains a
review of literature comparing the benefits of both inclusive and special
recreation services. Both empirical and descriptive studies are discussed, with
primary emphasis on inclusive training and recreation service opportunities
provided to people with cognitive and physical impairments.

Foley (1979) compared the swim-skill competencies of persons with

disabilities trained in an integrated program to those of persons trained in a

35

segregated program. Two swim groups were compared: a control group with 20
children with disabilities and a treatment group with 10 children with disabilities
and 8 children without disabilities. The subjects ranged from 5 to 11 years in age
and were identified as beginning swimmers before the initiation of this
investigation. The “I Can” aquatic training instrument was used for instructional
training content. Both groups were provided with 1-hour training sessions, three
times per week, for a duration of 5 weeks. A participant-to-staff ratio of 2:1 was
maintained in both groups throughout the training. Foley hypothesized that the
children with disability who were involved in the mainstreamed group would
demonstrate more swim-Skill competency than those in the segregated group.
The results of this study did not support his hypothesis. However, all of the
children in the investigation demonstrated improved swim-skill performance.
Therefore, the author concluded that this Study demonstrated that children with
disabilities can be successfully trained in an integrated program without a
negative effect on skill attainment.

McAvoy, Schatz, Stutz, Schleien, and Lais (1989) investigated the
personal and lifestyle effects on persons with and without disability after
engaging in an integrated wilderness experience. Both qualitative and
quantitative methods were used to explore outcomes. The Trait Anxiety Scale (a
component of the State-Trait Anxiety Scale) was administered, pre- and post-
experience, to determine the effect of trait anxiety following an adventure
experience. Results indicated that people exhibited a reduction in trait anxiety
following an adventure programming experience. Test results indicated that trait

anxiety levels were reduced for a duration of 1 month following the experience.

36

Qualitative techniques then were used to determine the effect of wildness
adventure programming on the participants’ lifestyles, attitudes, and feelings.
Telephone interviews were conducted 6 to 7 months after the experience on a
random sample of participants. Results indicated that an integrated wilderness
adventure experience had a positive effect on the participants. All (100%) of the
participants indicated they would participate in an integrated wilderness program
again and would recommend it to their friends. In addition, 78% of the
participants indicated long-term life style changes as a result of the experience.
Persons with disabilities indicated they had a better understanding of their
disability, an increased knowledge of how to pace themselves, a sense of physical
strength, increased concern for the environment, increased self—confidence, and an
increased willingness to take risks. Persons without disabilities indicated they
learned to be less judgmental and to think more positively, displayed increased
self-confidence, developed a heightened sense of others’ abilities, and gained an
appreciation for the natural environment.

Edwards and Smith (1989) investigated the effect an integrated day camp
experience on the appropriateness of social interactions with people with
disabilities. Eight people with disabilities were selected for participation in this
study. Throughout this 2-week integrated program, all subjects were assisted by
companions or support personnel. Subjects were observed a total of 96 times per
week using the Social Interaction Evaluation. This tool allowed the observers to
identify subjects’ interactions and to record whether the interactions were
appropriate or inappropriate. Results indicated that the number of appropriate

interactions increased Si gnificantly from the first week to the second week of

37

observations. However, results also indicated that there was no change in the
frequency of inappropriate interactions between week 1 and week 2. The
investigators concluded that the social interactions of people with disabilities
would improve if they were exposed to an inclusive activity environment.

Kleiber, Ashton-Shaeffer, Malik, Lee, and Hood (1990) explored the
perceived effect of participation in Special recreation services on the community
integration, personal development, and adjustment of people with disabilities.
Consumers and caregivers were sampled. Consumers were identified as people
with disabilities who participated in programs sponsored by Special recreation
associations (SRA) in Illinois. One-hundred forty-five (145) consumers
participated in this investigation; the majority (116 participants) were diagnosed
as mentally impaired, 16 people were diagnosed as having physical or sensory
impairments without the presence of mental retardation, and the remainder of the
participants were identified as multiply impaired. Consumer interviews were
completed in group format to inquire about the perception of benefits of SRA
involvement. Caregivers were sampled by means of mailed questionnaires. The
findings of this study indicated that caregivers reported that consumers displayed
increases in community participation, social competence, physical competence,
and personal competence. Consumers indicated that SRA participation allowed
them to learn new things and improve their socialization skills.

In 1992, Wilhite and Kleiber investigated the relationship between
participation in organized competitive sports and improved community
integration by persons with developmental disabilities. Data were collected from

participants, caregivers, and participation records. Ninety-Six (96) participants

38

and 14 caregivers were interviewed or surveyed regarding their perceptions of
participation in organized sports and the influence of this participation on
community integration. Community integration was assessed in two ways: (a)
self-reports of involvement in activities outside the home and (b) perceptions of
comfort level and independence in community facilities. Participation records
were reviewed to identify the extent of participation in competitive Sports (i.e.,
Special Olympics) over the last 10 years. Information collected from caregivers
suggested that persons with more Significant levels of disability (moderate to
severe mental retardation) displayed increased physical and social competence in
community settings as a result of participating in organized competitive sports.
However, caregivers reported that the competencies of persons with mild levels of
mental retardation did not improve enough to positively influence their
community integration. Similarly, participants with moderate or severe levels of
mental retardation were more likely than those with mild levels of retardation to
indicate increased participation in other community recreation programs and to
demonstrate emerging social interaction Skills given active participation in
organized sports (i.e., Special Olympics). This conclusion was also supported by
data obtained through participation records.

Using experimental, multiple-baseline design, Sowers and Powers (1995)
investigated the effectiveness of a training program intended to improve persons
with disabilities independent living and community integration Skills. The
consumers were trained to independently use a fast food restaurant. Three
subjects with physical and multiple disabilities were involved in this investigation

and made four weekly visits to restaurants. Results indicated that all participants

39

increased their abilities to be independent in this activity. Caregivers and
consumers were interviewed following the training to obtain their perceptions of
the effectiveness of this program. On the basis of this training program, all three
consumers reported that they felt more confident to complete activities on their
own in the future.

In conclusion, research has supported both inclusive and noninclusive
training or activity environments for people with disabilities. Special recreation
services, which are noninclusive in nature, have demonstrated the ability to
increase the community integration skills of participants with disabilities. On the
other hand, inclusive services of a noncompetitive nature have been found to
improve participants’ social Skills, independent living skills, self-confidence, and
awareness of personal abilities and limitations. However, inclusive services of a
competitive nature have been found to heighten anxiety levels and decrease
activity skill acquisition among persons with disabilities. Thus, there is a need for
non-competitive as opposed to competitive activity opportunities within inclusive

service delivery.

Strategies to Foster Inclusive Recreation Services
Research on barrier identification and the value and benefits of leisure has
helped practitioners design strategies to foster inclusive services. “Inclusion of
generic programs, . . . reverse mainstreaming” (Schleien et al., 1995, p. 7), and
buddy systems are three primary strategies that are used to facilitate inclusive
recreation opportunities for people with disabilities. Inclusion in generic

programs parallels integration in the educational system. In this approach, trained

40

staff members assist individuals with disability attending a “regular” recreation
class. The staff assist the “regular” program leader and successfully eliminate the
barriers to participation for a person with a disability (Richardson et al., 1987;
Schleien et al, 1995). In reverse mainstreaming, a traditionally segregated class is
“opened” to encourage persons without disabilities to participate with people with
disabilities (Zoerink & Rosegard, 1997). Furthermore, buddy systems use able-
bodied peers to assist people with disabilities (Salzberg & Langford, 1981; Sable
& Gravink, 1995). The following paragraphs offer a review of literature
describing successful strategies to foster inclusive recreation services. Both
applied research and program reviews are presented.

Germ and Schleien (1997) interviewed administrators, program staff,
volunteers, and consumers of services to determine the professional practices or
strategies that foster inclusive recreation services. Minnesota’s community
leisure service agencies that were successfully serving people with disabilities in
inclusive programs were selected for study. Participants included those who
programmed within municipalities (recreation and park departments), community
education programs, community centers, and camps. A total of 484 individuals
from 13 different agencies participated in the investigation. An open—ended
questionnaire was administered to each participant. The findings of this study
were linked to the participants’ role in fostering inclusive services.
Administrators perceived that their role in fostering inclusive services was to
establish philosophy, goals, finances, and program development to ensure
inclusion. Supervisors identified their role was to complete an initial screening or

needs assessment and appropriately place people with disabilities in activities that

41

ha

In

H\

foster inclusion. Program instructors and volunteers thought their role was to
ensure a consumers’ Skill attainment, offer appropriate adaptations, and monitor
attitudes. Finally, consumers thought their role was to attend programs and to
inform staff of their needs, wishes, desires, and aspirations related to inclusive
services.

Salzberg and Langford (1981) identified a need for increased
normalization in the provision of community-based recreation services. The
authors established an extensive volunteer program operating on a buddy system
approach. All volunteers were asked to take part in two activities per month with
a person with a disability. The perceived results of this program were increased
normal activity experiences, increased age-appropriate activity, and in some
cases, the fostering of friendships between people with and without disabilities.

The Montgomery County Department of Recreation in Silver Spring,
Maryland, implemented a program intended to facilitate inclusion. In 1984, this
department completed a needs assessment to determine the future direction of the
therapeutic recreation program (Richardson et al., 1987). Consumers with
disabilities (n = 6000) were asked whether they wished to participate in
segregated programming, generic programming, or both. Ninety percent (5,400)
of the respondents indicated they wished to participate in generic programming
opportunities. The authors described generic programming as enabling people
with disabilities participation in regular recreation classes with the assistance of a
support person or aid. After reviewing the results of the needs assessment, the
department established a plan to facilitate the mainstreaming process. Initially,

they established an advisory board to deal specifically with issues of integrated

42

programming. Once such programming was in place, they worked to develop a
policy Statement on mainstreaming and initial goals for mainstreaming. The
department was successful in obtaining funding to hire three additional
employees to facilitate an inclusive recreation program. Mainstreaming
companions were a Si gnificant component of the mainstreaming program.
Companions provided one-on-one assistance to people with disabilities as they
engaged in regular recreation programming. A program continuum was
established that identified four progressive levels of mainstreaming. Each
mainstreaming level was matched with the necessary accommodations needed
for active participation in a generic program. These levels were referred to as
Challenge Levels. Level 1 indicated complete mainstreaming. Level 2 indicated
accommodations were necessary such as adaptive equipment, transportation, or
interpreters. Level 3 indicated the need for major involvement of a support
person or companion. Level 4 indicated a segregated program that was age-
appropriate, implemented in the least restrictive environment possible, and
emphasized ability versus disability. The success of this program was
demonstrated through the mainstreaming of 262 persons (Richardson et al.,
1987).

Bork (1989) also described the use of companions within the Metropolitan
Park District of Toledo, Ohio. He recognized that nature lovers, who happened to
have a disability, were restricted from experiencing the solitude of parks and
natural preserves because they were unable to access these remote natural areas.

Toledo Metropolitan Park District initiated a trail partners program whereby

43

trained volunteers helped people with disabilities gain access to natural remote
areas of the park system. At the time of writing, Bork reported that 39 persons
were interested in participating in this program at some level (participant or
consumer).

Schleien, Fahnestock, Green, and Rynders (1990) presented a case study
to illustrate the effectiveness of sociometry, circle of friends, and cooperative
learning in facilitating a successful integrative experience for a person with a
Si gnificant disability. The strategies that were used focused on preparing and
manipulating the receiving environment. Sociometric strategies included a group
dynamic assessment and an empowering process of group restructuring. Through
the circle-of-friends Strategy a small group of Si gnificant others was empowered
to assist the person with a disability in an integrative experience. Finally,
cooperative learning was identified as an educational tool that fostered individual
interactions between one significant other and the person with a disability. The
authors reported that using these combined strategies fostered successful
community integration in this person with a disability.

Schleien and Green (1992) presented the concept of zero exclusion. As
they described it, zero exclusion results when partnerships are formed between
therapeutic recreation specialists and recreation programmers who traditionally
work with people without disabilities. These professionals work together to foster
inclusive opportunities for individuals as they design and develop new programs.
Critical to this concept is the inclusion of persons with disabilities at the
programs’ inception. A case study was presented in which a 10-year-old girl was

successfully integrated into a newly organized Girl Scout troop. The authors

44

reported that an advantage of this type of inclusive strategy is that it promotes
equal Status of individuals with and without disabilities. Disadvantages of this
strategy are that the initial costs of new programs may be increased with the cost
of adaptive devices and that increased staffing might be necessary.

Broida (1995) presented individual case studies in which programmatic
partnerships and transitional services were used. Broida defined transitional
services as those that manage resources necessary to move people to a greater
level of independence in their activities. One case study she cited involved
Certified Therapeutic Recreation Specialists (CTRS) working with individuals to
improve their access to the community. Included in the case study were
individuals with diagnoses of bilateral lower extremity amputation, mental
retardation, and cancer. All of the services provided appeared to focus on a
transition that would progressively remove the CTRS from direct services and
develop consumer Skills that would lead to independent leisure activity.

No discussion on strategies to foster inclusive services would be complete
without considering agencies’ preparation to provide such services. Devine and
Govern (2001) explored the degree to which the agencies provided inclusive
services, purchased adaptive equipment, provided staff training related to
inclusion, reviewed and revised departmental policy, assured the availability of
inclusive specialists, and marketed inclusive services. Specifically, the sample
included 369 municipal park and recreation agencies in 47 different states. Only
8% of the agencies sampled indicated that they provided extensive inclusive
services. The majority of agencies reported they provided some inclusive

services. The majority of respondents (43%) also indicated that they had

45

purchased some adaptive equipment but continued to need more to ensure
accommodation and full inclusion. Also, respondents indicated that they had
provided some staff training related to inclusion but thought they needed to offer
more training. Only 18% reported that they had hired adequate specialists or
consultants on inclusion. The majority of respondents (54%) reported that they
had not developed a marketing strategy to promote inclusive recreation services.
Finally, only 12% of the respondents indicated that they had reviewed and revised
their policies to ensure full access to services by people with disabilities.

In summary, the literature reviewed for this study report that individuals
with developmental disabilities are engaging in inclusive recreation services and
may even select these services over traditional segregated programming. The
strategies that have been identified to be the most effective in fostering inclusion
and ensuring successful participation, by people with disabilities in recreational
activity are using buddy systems, trained companions, and preparing the receiving
environments.

Empowerment, Personal Choice, and Decision Making
of Persons with Disability

People experience greater life satisfaction when they are able to make
their own decisions about their lives (Philips, 1992). However, people with
developmental disabilities historically have been unable to make decisions about
where they live, whom they live with, when they eat, and what they do during
their free time (Bullock & Mahon, 1992; Friedman, 1976). Research has
supported the reliability and validity of decision-making abilities of people with

moderate and mild levels of cognitive impairment (Dattilo, Hoge, & Malley,

46

1996; Sigelman et al., 1982; Sigelman et al., 1981a; Wadsworth & Harper,
1991). However, decisions traditionally have been made by the people who care
for or supervise the activities of people with disabilities (Hawkins et al., 1999;
Verpillot & Dattilo, 1995).

Empowering people with developmental disabilities to make decisions
about their lives is the intention of person-centered planning and self-
determination. Person-centered planning service delivery models recently have
been endorsed by many States as a service reform model for people with
developmental disabilities (O’Brien et al., 1997). The unique feature of person-
centered planning is its focus on a consumer’s abilities versus limitations (Hewitt
& O’Nell, 1998). Person-centered planning is guided by the principles of
normalization and individualized service delivery. The primary intention is to
place the consumer in an empowerment position related to his or her life and life
planning. Consumer choice and educated decision making are at the forefront of
this service delivery model. The wishes, aspirations, and preferences of the
consumer must be honored and considered a priority of the habilitative team.
The team’s job is to provide the support services necessary to fulfill the wishes
and aspirations of the consumer related to life planning.

Self-determination is recognized as a philosophical approach to service
delivery rather than a specific service delivery model. It is grounded on the
principles of personal control and life planning, independence, active
participation, and inclusion (Levitz, 2001). Head (2003) identified four principles
guiding self-determination: (a) freedom; (b) authority; (c) support; and (d)

responsibility. Freedom is the ability of a person with disability to plan his or her

47

life with the assistance of chosen friends and family. Authority is the freedom to
purchase the supports needed to facilitate a self-directed plan of action. Support
services imply the organization of resources necessary to access a plan. The plan
should allow the individual to live in the community, rich with community
involvement, contribution, and membership. Finally, responsibility implies that
the person with disability is recognized as a valued and caring member of a
community and is capable of making decisions that are personally and socially
life enhancing.

Bullock and Mahon (1992) offered a four-Step model to assist people with
mental retardation in decision making related to person-centered and life
planning. This model included: (a) identification of personal goals or aspirations;
(b) selection of choices or options to attain the goal; (c) identification of
consequences (“if” versus “then” discussions); and (d) selection of the best choice
that will lead to goal attainment. They believed that “people with mental
retardation should be encouraged to make decisions about their participation in
community-based programs” (p. 28).

Dattilo and Jekubovich—Fenton (1995) suggested that one’s perception of
control over leisure choices is actually more important than the selected leisure
activity in which the person participates. Dattilo and Rusch (1985) found that
even people with severe disabilities reduce their participation in activities ~when
they are not allowed to control or make decisions about their environment.
Nonetheless, as late as 1990, Bannerman, Sheldon, Sherman, and Harchik (1990)
reported that habilitative services did not consider clients’ preferences when

planning or engaging in leisure and activities of daily living.

48

Interviewing Persons With Mental Retardation

Personal choice and empowerment are based on the belief that individuals
are reliable self-reporters. Since the early 1980s, researchers have explored issues
related to interviewing persons with cognitive impairments. Wyngaarden ( 1981)
Stated, “It is possible and, indeed, critical to seek the personal insights of those
most directly affected by shifts in social policy. Mentally retarded persons
proved to be one of the valued and valid sources of information” (p.107). The
following section provides an overview of the literature concerning recommended
protocols, techniques, and guidelines to use when interviewing persons with
developmental disabilities.

AS part of a larger investigation exploring the adjustment of persons from
an institution to the community, Wyngaarden (1981) interviewed 383 people with
mental retardation. The general findings of this project indicated that
approximately 15% of those interviewed had a great deal of difficulty responding
to the questions and that 33% of the respondents appeared mildly confused about
some of the questions they were asked. However, the majority of respondents
(80%) were identified as willing and eager to participate in the interview process.
The investigators concluded that such interviews provided “in-depth and highly
provocative insights into the experience of retarded persons returning to
community life” (p. 113).

Si gelman, Schoenrock, et al. (1981) completed a three-part investigation
to determine the reliability and validity of responses when interviewing persons
with cognitive impairments. In the first phase, the investigators interviewed 52

children with varying levels of mental retardation (mild, moderate, severe, and

49

profound mental impairment) who lived in a State institution. In the second
phase, Sigelman et al. interviewed 58 adults with diagnoses of mild, moderate,
severe, or profound mental retardation who resided in a State institution. In the
third phase, the investigators interviewed 57 children with diagnoses of mild,
moderate, or severe mental retardation who resided in the community. The
findings suggested that verbal interviews were not feasible for people with
profound mental retardation. Also difficult were responses to open-ended and
multiple-choice questions. The investigators found that yes-no and either-or
questions (using pictures) were the easiest for people with mental retardation to
answer. However, the authors noted that the acquiescent response rate among
persons with cognitive impairments was high and that the lower the cognitive
level of performance, the higher their tendency to acquiesce.

Sigelman, Budd, Spanhel, and Schoenrock (1981b) expanded their
previous research with a study focusing on the acquiescence response rate of
persons with cognitive impairments. In particular, the investigators explored the
relationship between acquiescence rate, IQ level, and residential setting. Three
groups were sampled: (a) adolescents residing in the community, (b) adolescents
residing in an institutional setting, and (c) adults residing in an institutional
setting. The sampled groups were asked yes-no questions regarding behaviors
using paired alternatives (e. g., “Are you happy?” and “Are you sad?”). Persons
answering yes to both questions were identified as acquiescing. Results of this
investigation indicated that there was a high rate of acquiescence in persons with
cognitive impairment. Specifically, the authors reported that 40% to 50% of the

respondents contradicted themselves by answering yes to the original questions

50

and their opposites. Also, the authors found that acquiescence was more likely in
persons with lower IQ levels. In further exploration, the investigators
reinterviewed persons with severe cognitive impairments. Results of the
additional interviews suggested that acquiescence was more likely when the
individuals misunderstood the information presented. The authors concluded that
yes-no questions should be avoided when interviewing people with mental
retardation.

Sigelman et al. (1982) further explored response bias and validity when
questioning persons with mental retardation. As in the 1981 study, three groups
were sampled: (a) adolescents diagnosed as mentally impaired residing in
institutions, (b) adolescents diagnosed as mentally impaired living in the
community, and (c) adults diagnosed with mental retardation living in an
institution. Diagnoses of the individuals sampled ranged from mild mental
retardation to profound mental retardation. Two interviews were scheduled, 1-
week apart, to compare respondents’ answers to questions regarding the:
activities, residential setting, and quality of life. Alternate questions on these
topics were asked 1 week following the initial interviews. Interviews also were
administered to the caregivers of persons with cognitive impairments. The
questions posed to caregivers were similar to those asked of persons with mental
retardation. Yes-no questions, open-ended questions with and without probes,
and verbal and pictorial multiple-choice questions were asked. Response validity
was determined by comparing the responses of caregivers and persons with
disability. Response bias was assessed by comparing responses to paired

alternative yes-no questions. If persons with mental retardation contradicted

51

themselves while answering alternative questions, response bias was considered
to be present. The investigators concluded that the use of open-ended questions
were inadequate because persons with mental retardation could not answer the
questions or, if they could respond, they were unable to elaborate on their
answers. The authors found that probing during open-ended questions did not
improve the response rate or quality of response to such questions. The
researchers also found that the response rate improved with yes-no questions but
that response validity was sacrificed secondary to an increase in acquiescence.
Verbal and pictorial multiple-choice questions were found to be more useful than
open-ended questions.

Si gelman and Budd (1986) investigated the effect of visual aids on the
responsiveness to multiple-choice and either-or questions by persons with mental
retardation. Three groups of people diagnosed as mentally impaired were
sampled. As in previous research completed by Sigelman et al., the sample
comprised children and adults who were institutionalized and children who
resided in the community. Parents and caregivers were interviewed as a validity
check. Subjects were interviewed privately and asked questions regarding leisure
activities and activities of daily living. Each group was interviewed on two
occasions. During the first interview, participants were asked questions without
the support of visual aids, but during the second interview visual aids were used
Visual aids (photographs and Sketches) were used to identify possible responses
to yes-no, either-or, and multiple-choice questions. Interview results
demonstrated that (a) pictures had no or little effect on the interviewees’ ability to

respond to yes-no questions, (b) visual aids did not reduce respondents’ tendency

52

toward acquiescence, and (c) visual aids improved responses to multiple—choice
and either-or questions. Pictures appeared to have a positive effect on reducing
bias when respondents were required to select one of two items. Therefore, this
research supported the use of visual aids when interviewing persons with mental
impairments, especially when presenting either-or questions. The results of this
study further supported previous research indicating that it is a poor strategy to
use yes-no questions when interviewing persons with cognitive impairments.

Flynn (1986) completed a pilot study to investigate, in part, the validity of
open—ended questions when interviewing persons with mental retardation. Flynn
also sought to discover whether persons with mental retardation can provide
meaningful information when responding to questions about their life and life
satisfaction. Fifteen people who resided in their own homes and had diagnoses of
mental retardation were interviewed. In this pilot study, Flynn determined that
the subjects were willing to discuss their life and life experiences. However,
those interviewed often provided too much information, too little information, or
off-topic information when responding to open-ended questions.

Dent (1986) explored the practicality of using open-ended questions when
interviewing 23 children, aged 8 to 11 years, with IQ’S ranging from 50 to 70
(mild mental retardation). The purpose was to determine the ability of persons
with mild mental retardation to accurately recall and self-report incidents a day
after an event. The investigation team staged an incident, and the next the
children were asked to recall that incident. The individual selected to interview
the children with disability had no prior knowledge of the Staged incident. Three

questioning formats were used during the interview: (a) free recall, (b) general

53

questions, and (c) specific questions. Dent concluded that, with this sample,
asking general questions (e. g., “What did the person look like?”) was the
preferred open-ended interview technique as compared to specific questioning
(e.g., “What was the person wearing?”) or free recall (e.g., “Tell me what
happened”).

Wadsworth and Harper (1991) explored the reliability of self-report by
persons diagnosed as moderately mentally impaired. A picture-prompted test was
designed and compared with verbal questioning techniques. The results of the
investigation indicated that the use of pictures (sketches) enhanced the test-retest
reliability of the interview. Forty-three adults with a diagnosis of moderate
mental impairment volunteered to participate in this investigation. Participants
were asked to respond to questions presented in an either-or format. The
questionnaire was readministered every 7 days over a period of 21 days for a total
of four interviews. During two consecutive interviews, participants were asked
questions verbally with no visual aid and during the other two consecutive
interviews, the participants were asked questions with pictorial representations.
The authors concluded that visual-cued (picture-cued) strategies of questionnaire
administration increased the reliability of self-reports by persons with a diagnosis
of moderate mental retardation.

Dattilo et al. (1996) surveyed 100 adults with mental retardation to obtain
their perceptions of their level of involvement in leisure activity, quality of leisure
experiences, and constraints to leisure pursuits. Sixty-five percent of those
interviewed were males who lived at home with their families. The questionnaire

format included pictorial representations of activity options, yes-no responses,

54

and Likert-scale responses to questions concerning quantity or amount. Two
weeks following the initial administration of the instrument, a second
questionnaire was presented to 20% of the original group. Overall, there was a
high correlation between the two test administrations. A similar questionnaire
was administered to caregivers. The investigators noted a significant correlation
between the responses of caregivers and those of persons with mental retardation.
In conclusion, Dattilo et al. recommended that a variety of strategies be
implemented to increase confidence in the reliability and validity of responses
when questioning persons with mental retardation.

In summary, the literature supported interviewing persons with moderate
and mild levels of mental retardation. However, verbal interview formats were
not considered effective in questioning persons with profound degrees of
cognitive impairment. When interviewing persons with mild or moderate degrees
of mental retardation, it was recommended that multiple-choice or either-or
questions with pictorial cues be used to improve the accuracy and reliability of
responses. It has been found that people with mental retardation have a greater
than average incidence of acquiescence; the tendency toward acquiescence
increases with decreasing IQ. However, acquiescence can be managed by
employing multiple questioning strategies, such as either-or, multiple-choice,

specific open-ended questions, and visual aids.

55

CHAPTER III

METHODS

Introduction

My purpose in this Study was to identify consumers’ and caregivers’
preferences for inclusive over noninclusive recreation services. Consumers in
this Study were people with moderate and mild levels of cognitive impairment.
The procedures that were followed in the study are explained in this chapter
which is divided into two major sections. The first section (Section A) details the
development of the instruments including: (a) an overview, (b) development of
the consumer instrument; and (c) development of the caregiver instrument. The
second section (Section B) describes the study and includes: (a) selection of the
participants; (b) consumer interview and caregiver survey procedures; and (c)

treatment of the data.

Section A: Development of the Instruments

Overview
Following the review of the literature two instruments were developed for
use in this study. One instrument was developed for consumer inquiry and the
second instrument was developed for caregiver inquiry. This section describes the
methods used to develop both instruments and is divided into two subsections
including: (a) development of the consumer instrument, and (b) development of

the caregiver instrument.

56

Development of the Consumer Instrument

The literature indicated that when people with cognitive impairments are
questioned, closed-ended questions promote acquiescence (Si gelman et al,
1981b), whereas open-ended questions decrease responsiveness (Si gelman et al.,
1982), cause confusion (Biklen & Moseley, 1988; Wyngaarden, 1981), elicit off-
topic or irrelevant responses (Flynn, 1986), and are biased by subjects’ attempts to
please the interviewer (Biklen & Moseley, 1988; Wyngaarden, 1981). However,
using pictures has been found to stimulate and improve responsiveness (Alreck
& Settle, 1995; Sigelman & Budd, 1986; Sigelman et al., 1982; Wadsworth &
Harper, 1991). In particular, closed-ended questioning, supported by pictorial
cues, has been found to be one of the most effective strategies for questioning
people with mental retardation (Si gelman & Budd, 1986; Wadsworth & Harper,
1991).

Following the review of the literature, I designed the instruments used to
collect data for this Study. The consumer interview instrument was designed
using closed-ended questions, supported by either-or pictorial cues (Sigelman &
Budd, 1986; Wadsworth & Harper, 1991). The procedural strategies used to
develop the consumer instrument are described within this section and visually

represented in Table 3.1.

57

Table 3.1: Procedural steps involved in the development of the consumer

 

 

 

 

instrument.
Step Procedure
Step 1 Literature review
Step 2 Interview instrument designed and pictorial cues choreographed
Step 3 Worked with community-based rehabilitation agenct to seek

referrals from interested participants

 

 

 

 

 

 

 

 

Step 4 Photographs taken

Step 5 Expert panel review of photographs

Step 6 Photograph retakes

Step 7 Consumer panel review of photographs

Step 8 Integrate photographs as pictorial cues to interview instrument
Step 9 Pilot testing

Step 10 Instrument revision

Step 11 Interview protocol and instrument ready for implementation

 

 

 

 

Pictorial Cues

The first step in the design of the consumer instrument was the
development of the pictorial cues. Color photographs were selected as the best
method to help participants with cognitive impairment respond to questions
presented throughout the interview. An assistant and I took photographs using
both a standard and a digital camera.

Individuals with and without disabilities were conveniently selected to
participate as models in this study. Individuals without disabilities were selected
on the basis of their age and gender. The models were informed of the study
purpose, the types of photographs in which they would be modeling, how the

photographs would be used in the investigation, where the photographs would be

58

stored, and how the photographs would be used once the Study was completed.
Models were also asked to return for additional photo sessions if necessary
(following review by panels of experts and consumers and a pilot Study). To
ensure confidentiality, the models’ names were not revealed in any
documentation.

With the assistance of a second referring agency (a mid-Michigan
community mental health organization) I contacted guardians to obtain permission
for their wards to participate in this study as models for the photographs. The
guardians were informed of the study purpose, types of photographs to be taken,
and potential risks; they were asked to sign a release consenting to their wards’
participation and the use of their photographs (Appendix A). In addition,
participants were informed of the potential risks of participation and were asked to
Si gn the same waiver assenting to participate in the study, and allowing the use of
their photographs in the study and in publications following the completion of the
investigation. Individuals (with moderate or mild levels of cognitive impairment)
from the mid-Michigan area who were not to be involved in the consumer panel,
pilot study, or primary investigation were asked to model for the photographs.

The individuals without disabilities who participated in the study as
models were conveniently selected on the basis of their age and gender. The
models with and without disabilities needed to be of similar ages and to represent
both genders equally. All models received small gifts of appreciation for their

participation in this investigation.

59

Activities represented in the pictorial cues. The photographs that were
taken Showed people with and without disabilities participating in a variety of
recreational activities. The literature directed the type of recreational activities
selected for inclusion in the photographs (Dattilo & Hoge, 1995; Malik, 1990;
Sparrow & Mayne, 1990). Activities that people with mental retardation are
known to engage in most frequently and those that people with disabilities report
they prefer were selected for use in the photographs. Therefore, photographs
Showed people viewing television (Dattilo & Hoge, 1996; Malik, 1990), listening
to music (Dattilo & Hoge, 1996; Malik, 1990), bowling (Dattilo & Hoge, 1996),
working on a craft (Dattilo & Hoge, 1996; Sparrow & Mayne, 1990), playing
basketball (Dattilo & Hoge, 1996), and going for a walk (Dattilo & Hoge, 1996;
Malik, 1990).

People represented in the pictorial cues. Because a paired-alternative
approach (Wadsworth & Harper, 1991) would be used, two photographs were
created for each activity. One photograph displayed participants engaged in
activity with people with disabilities (displaying noninclusive recreation patterns),
whereas the second photograph displayed people with and without disabilities
engaged in the same activity (displaying inclusive recreation patterns). A total of
12 photographs (or six photo sets) were created for use in this investigation.

The people with disabilities that were photographed had a primary
diagnosis of mental retardation with distinct physical or facial anomalies (i.e.,
Down syndrome). No people with visual impairments or people using

wheelchairs were displayed in the photographs. The people without disabilities

60

had plain physical and facial features. All people in the photographs were adults
of similar ages. The two genders were equally represented in the photographs.
Finally, the photograph models were asked to wear similar clothing (e.g., jeans
and tee-shirts, sweatsuits) and to wear minimal jewelry.

Choreography of pictorial cues. Every effort was made to reduce
background and other environmental distractions in the photographs. The people
were the primary focus Of each photograph, and the activity blended into the
background. Where appropriate, a portrait approach (close-up Shot) was taken
with each photograph to highlight the people and reduce the backgrounds.
Photographs were choreographed as follows (Appendix B):

1. This was a photo of people with disability engaged in the activity of
bowling. The photograph was taken at a local bowling arena. Two people with
disability were photographed. The photo displayed one person at the ball return,
with ball in hand. The second person was near the ball return, facing the person
with the ball. Both people appeared to be bowling together. One person was
male and the other was female. This was a close-up Shot with the people the main
focus; bowling lane was visible in the background.

2. This photograph was the same as photo 1 except that the second person
(without the bowling ball) did not have a disability. Both people in the
photograph were male.

3. This was a photograph of people with disability engaged in a one-on-
one game Of basketball. The photograph was taken at a local gymnasium. Two

people with disability were photographed, one male and one female. The

61

photograph showed the female handling the basketball, with the male guarding
her. A close-up photo was taken so that one could see the participants’ faces, with
the gymnasium in the background.

4. This photograph was the same as photo 3 except that the person
guarding was a person without disability. The person handling the ball had a
disability. Both people in the photograph were male.

5. This photograph was of three people with disability watching
television, two were male and one was female. The photograph was taken in a
living area. All participants were Sitting in chairs next to one another. One person
was holding a remote control and another was holding a TV guide. Two males
and one female were present. The television was visible in the background of the
photograph.

6. This photograph was the same as photo 5 except that one person
(male) did not have a disability. One person with a disability held the TV guide.
The person without a disability held the remote control.

7. This was a photograph of three people with disabilities, two males and
one female, going for a walk. The photo Showed the participants walking side by
side down a sidewalk, without physical contact. Trees were visible in the
background of the photograph.

8. This photograph was the same as photo 7 except that the female did not
have a disability.

9. This photograph Showed two people with disabilities listening to music

in an indoor area. One person was wearing a headset, smiling, and looking at the

62

second person. The person wearing the headset was male, and the person without
the headset was female. A CD player was positioned in front of the person
wearing the headset. A close-up Shot was taken to minimize environmental
distractions.

10. This photograph was the same as photo 9 except that the female did
not have a disability. The male with a disability continued to wear the headset.

11. This photograph Showed two people with disabilities engaged in a
craft or hobby. One person was male and the other was female. The photograph
was taken in a living area, with the participants sitting at a table. The photograph
Showed both people working on a Similar project (i.e., painting a birdhouse).
Both appeared to be working on their project.

12. This photograph was the same as photo 11 except that the male did

not have a disability.

Reliability of the Instrument

When an investigation involves people with cognitive impairment, an
interview, and the use of photographs as a component of the interview tool,
reliability may be compromised. Reliability has been described as the consistency
or repeatability of a measurement (Babbie, 1995; Wiersma, 1995). Questionnaires
and interview instruments are considered reliable when the investigator
consistently receives Similar responses to the same questions. Reliability
coefficients can range from 0 to 1.0, with .70 or higher being preferred
(Wiersma,1995). Strategies to maximize reliability are discussed in the following

paragraphs.

63

Reliability and the Interview Process. Reliability issues that can occur
during the process of interviewing include inconsistencies in interview delivery,
and errors in recording and interpretation. To ensure consistency in interview
delivery and to ensure adequate knowledge on the a part of the interviewer
(Alreck & Settle, 1995; Malik, Ashton-Shaeffer, & Kleiber, 1991; Wadsworth &
Harper, 1991), I completed all of the interviews with the participants. I have had
more than 5 years of programming experience with people with developmental
disabilities and designed the research project. Also, I was of the same mean age
as the participants, according to Alreck and Settle (1995), if the ages were
different reliability problems could result.

Several strategies were employed to reduce recording and interpretation
errors. One strategy was to tape record responses to the open-ended questions
regarding participation in recreation activities (Biklen & Moseley, 1988; Malik et
al., 1991). The tape was replayed immediately following each interview and the
content checked for accuracy of recording and interpretation. A checklist was
used to help in recording responses to either-or, close-ended, and open-ended
questions regarding recreation participation (Alreck & Settle, 1995). Finally, I
was not compensated for the interviews, which reportedly reduces the potential
for falsification in data collection (Alreck & Settle, 1995).

Reliability of the Interview Tool. Reliability issues with the tool itself
were minimized through the use of expert and consumer panels as well as pilot
testing (Dattilo et al., 1996). Expert and consumer panelists looked at the

photographs to ensure they could identify people with and without disabilities.

Photographs that achieved an 80% or better agreement rate among members of the
consumer and expert panel were not changed. Photographs that had less than an
80% agreement rate were changed as per recommendations of the panel members.
Another Strategy that was implemented to improve reliability of consumer
responses was the use of repeated measures. The same question (regarding choice
of inclusion or noninclusion) was asked Six times. The photographs used in the
consumer instrument repeatedly Showed the same people, even though the

activities and environments changed.

Validity of the Instrument

Validity refers to the accuracy and factual interpretation of the results of
an investigation (Babbie,1995; Fraenkel & Wallen, 1996). In this investigation,
validity issues could arise with the interview tool, its delivery, and the population
sampled. Strategies to manage validity issues are explained in this section.

Validity and the Sampling Group. Low cognition and a tendency toward
acquiescence (Malik et al., 1991; Sigelman et al., 1981a; 1981b) are primary
validity concerns when questioning people with mental retardation. The literature
suggested that the amount of acquiescence corresponds with intelligence. The
lower a person’s intelligence, the higher the amount of acquiescence (Sigelman et
al., 1981b). Therefore, only those people diagnosed with moderate or mild levels
of mental retardation were interviewed during this investigation (Si gelman et al.,
1981b). In addition, pictorial cues were used to improve responses to closed-
ended questions (Dattilo et al., 1996; Si gelman et al., 1982; Wadsworth & Harper,

1991). These pictorial cues were presented in a random fashion throughout the

65

interview (Alreck & Settle, 1995; Dattilo et al., 1996; Wadsworth & Harper,
1991). Below-normal intelligence is associated with decreased attending skills.
Therefore, the interview was designed to reduce environmental distractions, be
shOrt in duration, and offer participants breaks in activity every 15 minutes or as
needed (Alreck & Settle, 1995). For the same reason, abstractions, abstract
adjectives, and value-oriented Statements were avoided throughout the interview
(Malik, 1990; Wyngaarden, 1981).

Validity and the Interview Delivery Process. Attempting to please the
interviewer (Wyngaarden, 1981) and fears associated with the interview process
(Malik et al., 1991) are other validity concerns when questioning people with
mental retardation. In an attempt to reduce the participants’ desire to please me, I
assured them that there were no right or wrong answers and that their answers
would have no effect on the services they received from the referring agency
(Biklen & Moseley, 1988). Further, I used no questions or statements intended to
“lead” the participants’ responses (Alreck & Settle, 1995; Malik et al., 1991;
Wyngaarden, 1981). To reduce subjects’ fear associated with the interview
process, I spent time building rapport with each participant (Biklen & Moseley,
1988; Malik et al., 1991; Wadsworth & Harper, 1991; Wyngaarden, 1981) and
held the interview in an environment familiar to the participant (Malik et al.,
1991; Wyngaarden, 1981).

Validity and the Instrument. The use of pictorial cues may also have
raised concerns about the validity of the consumer instrument. Specifically, I

needed to be assured that the participants could discriminate between the people

66

with and without disabilities shown in the photographs. For this reason, a
consumer panel and an expert panel were asked to evaluate the instrument’s
content for validity issues (e. g., “Was it easy to identify the people with and
without disabilities in the photographs?”). Photographs that had an 80% or better
agreement rate among members of the consumer and expert panel were not
changed. Photographs having less than an 80% agreement rate were changed as
per recommendations from panel members.
Method Used to Select the Panel of Experts
and the Panel of Consumers

The Panel of Experts. A panel of experts consisting of Six professionals
was asked to review the photographs for purposes of establishing content validity
(Dattilo et al., 1996). A convenience sampling technique was used to secure panel
participants with backgrounds in therapeutic recreation, parks and recreation,
vocational rehabilitation, and case management. Panel members were asked to
review the photographs to ensure that they could easily distinguish between
people with and those without disabilities (Appendix C). Similarly, they were
asked whether they thought that people with moderate and mild levels of
cognitive impairment would be able to recognize the people with and without
disabilities shown in the photographs. The experts also were asked to assess the
photographs for any environmental distractions that could potentially divert a
participant’s attention from the people in the photographs. An 80% (five out of

six) agreement rating was expected for each photograph. If fewer than five of the

67

participants agreed with the content of a particular photograph, the photo was
changed. If it was necessary to modify a photograph, the same models were asked
to return for changes to the original photograph. However, if the panel provided
feedback that they could not identify whether a particular individual did or did not
have a disability, a new model was sought. Following feedback from the panel of
experts, the instrument was prepared for the consumer panel and the pilot test.

The Panel of Consumers. I contacted seven individuals with disabilities to
serve as members of a consumer panel and review the photographs for content
validity purposes. This panel consisted of people with moderate and mild levels
of cognitive impairment who lived in the mid-Michigan area and were not
subjects in the primary study or models for the photographs. A convenience
sampling technique was used to select members of this panel.

I met with the panelists at their homes or places of employment. They
were presented with each photo set and asked to look at the pictures and identify
differences in the people in the photographs (Appendix D). The intention of this
line of questioning was to ensure that the consumers could clearly observe that
some of the people in the photographs had disabilities whereas others did not. I
asked each consumer nonleading open—ended questions as they looked at the
photographs. Initially, consumers were asked whether they observed differences
in the people in the photographs. If their responses did not relate to disability
versus nondisability differences, I continued with graded probing questions that
eventually led to directly asking consumers to point to the people in the

photographs who had disabilities. If 80% (four out of five) of the consumer panel

68

agreed with the photo content (e.g., were able to point to the people with
disabilities in the photographs), it was not changed. If more than four of the
panelists disagreed with the photo content, the photograph was changed. AS with
the expert panel, if it was necessary to modify the photographs, the same models
were asked to return for changes to the original photographs. However, if the
panel provided feedback indicating that they could not identify whether an
individual did or did not have a disability, a new model was sought. Following
feedback from the consumer panel, the instrument was prepared for the pilot study

involving consumers.

Consumer Interview Instrument

Once the instrument (photographs) was evaluated by the panel of experts
and the consumer panel, the interview procedures were added (Appendix E).to
create the data collection tool. AS stated earlier, consumers were interviewed to
determine their preferences for noninclusive or inclusive recreation services. A
brief overview of the interview instrument designed for administration to the
consumers is given in this section.

Using repeated measures, closed-ended questioning supported by either-or
pictorial cues was the primary method of questioning people with mental
retardation. Open-ended questions were used to obtain information from
consumers about their recreation participation patterns. Consumers’ demographic
data (diagnosis, age, gender, residence type) were obtained from the referring

agency. For complete interview procedures see Appendix E.

69

The Consumer Pilot Study

Selection of Pilot Study Participants. The instrument and interview
procedures were pilot tested by consumers. Seven individuals, were conveniently
selected, to take part in the pilot study. They were representative of the sample in
this study (Dattilo et al., 1996). Participants involved in the pilot study were not
involved in instrument development, the panel of experts, the consumer panel, or
the actual study.

Consumer Pilot Study Procedures. The purpose of the consumer pilot
Study (Appendix F) was to evaluate the interview procedures for reliability and
practicality (e.g., ease of use, readability, understanding, time, terminology). As
in Wyngaarden’s (1981) study, the referring agency assisted in making the initial
contacts with people who might be interested in participating in the study. Letters
were sent to consumers or guardians (as appropriate), inquiring whether they
wished to participate. Potential participants were asked to Sign and return a
release form indicating their interest in participating in this Study and allowing the
agency to provide me with their demographic information. The cover letter and
release form (Consent to Participate in Research, Appendix G) (a) described the
purpose and benefits of the Study, (b) identified that there were no known risks of
participation, (c) described the interview procedures, ((1) assured participants that
they could refuse to participate or terminate the interview at any time without
compromising their access to services, and (e) assured participants that the
information they shared would remain confidential. Participants who were 18

years of age and competent (being their own guardians) signed the permission

70

form as consenting adults. If a participant was under the age of 18 or
incompetent, the legal guardian Si gned the form consenting to their ward’S
participation in the study. In such cases, consumers also were asked to sign the
consent form, assenting to participate (Malik, 1990).

Once people interested in participating in the pilot study had been
identified, I telephoned them to arrange a time and location for the interview
(Wyngaarden, 1981). Locations were chosen that would ensure privacy,
minimize distractions, and be familiar to the consumers (Malik et al., 1991).
Thus, the consumer pilots were implemented in either their homes or their place
of employment. For comfort and perceived safety of the consumer and
interviewer, a caregiver was in the area of the interview but did not directly
observe or offer input to the participant.

To initiate the interview, I discussed the purpose and intention of the pilot
Study. Consumers were assured there were no right or wrong answers. Privacy,
confidentiality, and risk of participation also were discussed. Consumers were
informed that the pilot study would involve two meetings with the investigator.

The consumer pilot began with scripted questions and comments to
establish rapport and maximize consumers’ comfort (Biklen & Moseley, 1988). I
read verbatim the pilot consumer interview instrument (Appendix E); however, I
was allowed to rephrase questions in a number of different ways to elicit a
complete response from participants (Wyngaarden, 1981). Supplying suggestive
answers while rephrasing was avoided to minimize biased responses (Malik et al.,

1991; Wyngaarden, 1981). Also, I avoided using value-oriented or abstract

71

adjectives (e.g., wish, prefer) because they are difficult for people with mental
retardation to understand (Malik, 1990; Wyngaarden, 1981). If the pilot lasted
more than 15 minutes, participants were given a Short break to minimize the
potential for fatigue bias (Alreck & Settle, 1995). Once the interview was
completed, a time and location for the second interview were arranged with both
the participant and the caregiver. To avoid bias, consumers were asked not to
discuss the interview with one another until after the second interview.

Analysis of the Consumer Pilot Study. The consumer pilot study involved
a review of the interview procedures for reliability and practical usability. A test-
retest method (Babbie, 1995) was used to assess the reliability of consumers’
responses to the instrument and interview procedures. The pilot was administered
to consumers a second time 1 week following the first administration (Wadsworth
& Harper, 1991). The consistency of consumer agreement was assessed using a
reliability co-efficient. The closer the reliability co-efficient value was to 1.0 the

more reliable the procedures and instrument.

Development of the Caregiver Instrument
The caregiver instrument was similar in content to the consumer
instrument but was formatted to be completed independently by participants. The
procedural techniques used to develop the caregiver instrument are described

within this section and visually represented in the following table (Table 3.2).

72

Table 3.2: Procedural steps involved in the development of the caregiver

 

 

survey tool.
Step Procedure
Step 1 Questionnaire designed based on literature review and the

content of the consumer instrument

 

 

 

 

 

 

 

 

Step 2 Worked with a referring agency to seek interested participants

Step 3 Pilot testing

Step 4 Modification of questionnaire

Step 5 Questionnaire ready for implementation in the Study
Caregiver Instrument

I designed the caregiver instrument (Appendix H), which included content
similar to the consumer interview. Caregivers were asked to respond to questions
regarding their preferences for inclusive or noninclusive recreation services for
the children or consumers under their care. They were given the opportunity to
provide subjective data regarding their preferences in a comments section included
on the instrument. Unlike consumers, caregivers were given no pictorial cues. In
addition, for comparison purposes, caregivers were asked to provide demographic
information such as their age, years of experience as a caregiver, extent of training

related to inclusion, and past involvement in inclusive recreation services.

Caregiver Pilot Study Procedures

The purpose of the caregiver pilot study was to evaluate the caregiver
survey for reliability, readability, and ease of use (Appendix I). Participants in the
study were conveniently sampled through contacts with consumers who had

participated in the consumer pilot study. Caregivers were asked to complete the

73

caregiver survey and respond to questions evaluating the clarity of information
presented.

Selection of Caregiver Pilot Study Participants. The caregiver instrument
was pilot tested by caregivers (n = 5) who were not involved in the actual study.
Pilot participants were conveniently sampled through contacts with consumers
who had participated in the consumer pilot study.

Caregiver Pilot Study Analysis. As was done with the consumer
instrument, the caregiver instrument was changed if 80% (four out of five) of the

pilot participants recommended modifications.
Section B: The Study

Selection of the Participants

Sixty-two people with diagnoses of moderate or mild levels of mental
retardation and 46 caregivers were sampled in the primary investigation. A
convenience sampling technique was used to select participants for this study.

A large community-based rehabilitation facility was contacted to assist in
securing participants for the study. This rehabilitation agency had a catchment
area of four counties and daily served over 480 people with developmental
disabilities. Agency reports indicated that 42% of the persons diagnosed with
developmental disabilities were female and 58% were male. The primary
ethnicity of agency consumers was Caucasian (93%), whereas others were
African American (3%), or Asian, Native American, and Hispanic (3%). The
referring agency served a broad age group. However, the majority of their

consumers were in their 308 (28%) or 405 (32%). Consumers in their 205

74

 

test
of l
cor

ins

car
iniI

fol!

C0.

Th.

accounted for approximately 17% of the agency’s working persons with
disabilities, whereas 15% were in their 503, 6% were in their 60s, and 2% were
teens, ages 16 to 19 years. This organization’s consumers resided in four types
of living accommodations: (a) private homes, (b) semi-independent apartment
complexes, (c) adult foster care or other group home facilities, and (d)

institutional settings.

Consumer Interview and Caregiver Survey Procedures
Following the pilot of both consumers and caregivers, the consumer and
caregiver instruments and procedures were modified as appropriate. I then
initiated the actual study. The procedures for the study are described in the

following paragraphs.

Consumer Interview Procedures
The procedures used when interviewing consumers are within this section.

These procedural steps are visually represented in Table 3.3.

75

Table 3.3: Consumer interview procedures

 

 

 

 

 

 

 

 

 

 

 

 

 

Step Procedure

Step 1 Obtained written guardian consent for consumer participation

Step 2 Interview scheduled

Step 3 Record demographic data

Step 4 Meet with interested consumer

Step 5 Obtain consumer assent or refusal to participate

Step 6 Interview initiated with rapport building

Step 7 Presented questions related to inclusion using closed-ended,
either-or questioning supported by pictorial cues

Step 8 Presented questions concerning recreation participation
patterns

Step 9 Debriefing

Step 10 Consumer thanked for their participation and assured
supervision of caregiver

 

The investigator contacted a large mid-Michigan rehabilitation agency

requesting their involvement in this research project. Following an initial

telephone contact, I sent a letter to the agency (Appendix J) describing the study

and its purpose, as well as the involvement of consumers and caregivers, and

requesting their assistance in contacting consumers who might be interested in

participating in the study. This proposal required the approval of the agency’s

executive director and board of directors. AS in Wyngaarden’s (1981) study, the

referring agency made the initial contacts with the consumers and caregivers,

seeking their participation in the study. Interested participants completed the

Consent to Participate in Research form (Appendix G) which described the

purpose and benefits of the study, identified that there were no known risks of

76

 

participation, described the survey procedures, assured participants that they
could refuse to participate or temrinate their involvement at any time without
compromising their access to current services, and promised participants that the
information they shared would remain confidential. Participants who were 18
years of age and competent signed the permission form if they were their own
guardians. If a participant was under the age of 18 or incompetent, the legal
guardian signed the consent to participate form (Malik, 1990). Consumers and
guardians were notified that, by Si gning the permission form, they gave the
referring agency permission to provide me with basic demographic information
about them (i.e., level of mental retardation, age, gender, address, phone). Once
interested participants were identified by the referring agency, I contacted them
either by telephone or at their place of employment to arrange a time and location
for the interview (Wyngaarden, 1981). Interview locations were arranged at the
convenience of the consumer but assured privacy, minimized distractions, and
were familiar to the consumer (Malik et al., 1991). For this reason, interviews
were implemented in the consumers’ home or place of employment (the referring
agency).

To minimize reliability issues (e.g., in consistency in interview delivery,
recording, and interpretation errors) I conducted all interviews with the
consumers. I was consistent in wearing casual clothing (e.g., khakis and shirt, or
sweater) and minimal to no jewelry during all of the scheduled interviews. Also,
I maintained the same demeanor during each interview. I obtained demographic
data (i.e., date of birth, gender, diagnosis, type of residence) from the referring

community-based rehabilitation agency before initiating the interview. The

77

referring agency gave me a listing of consumers who had provided a signed
release form, as well as all of the requested demographic information.

Interviews began with introductions and an overview of the purpose and
benefits of the study. As appropriate, I told consumers that their guardians had
given permission for them to participate in the interview and asked whether they
agreed with their guardian and wished to participate. If so, the consumer was
asked to co-Sign the release form (Appendix G). Consumers who were their own
guardians were reminded that they had Si gned the release and were asked whether
they still wished to be involved in the study. Given consumer assent, the inquiry
began with my assuring consumers that there were no right or wrong answers and
no known risk of participation, and informed them that their privacy and
confidentiality would be maintained. Participants were also assured that their
responses would not affect the services they received from the referring agency.
Participants were shown the interview tool and audiotape recorder, and informed
that some of their responses would be recorded but erased shortly after the
interview (Alreck & Settle, 1995).

The interview area was arranged for the comfort and convenience of the
consumers. When interviews were arranged at the place of employment, they
were completed in either a conference room, a break room, or a lunch area.

When interviews were arranged at consumers’ homes, they took place in the quiet
of the dining room, kitchen, or living room. Interviews at the State institution
took place in the dining area of the appropriate apartment, office, or conference

room.

78

Interviews began with my asking questions and making comments to
establish rapport and maximize consumers’ comfort (Biklen & Moseley, 1988). I
read the consumer interview procedure verbatim (Alreck & Settle, 1995)
(Appendix E); however, I was allowed to rephrase questions, maintaining the
original content, to ensure that consumers understood (Dattilo & Hoge, 1995).

When asking the closed-ended questions related to the consumer’s
preferences for inclusive or noninclusive recreation services, I used photographs
as pictural cues to assist the consumer in responding. The investigator asked the
participant the first closed-ended question and presented the photo set, upright,
facing the consumer. Responses were immediately recorded on the interview
checklist. This procedure was repeated six times until all activity card sets had
been presented. Photo sets were presented in random order as per the directions
in each interview instrument (Alreck & Settle, 1995).

All photographs used in the consumer instrument were numbered, 1
through 12. Photos 1 and 2 represented people engaged in bowling, photos 3 and
4 showed people engaged in one on one basketball, photos 5 and 6 represented
people watching television, photos 7 and 8 showed people going for a walk,
photos 9 and 10 showed people listening to music, and photos 11 and 12 showed
people working on a craft. The number was written on the back of each
photograph and visible only to the investigator. All photographs were 5" x 7" and
laminated for protection.

I developed six interview instruments, with activities presented in random
order. Consumers 1 through 10 were administered consumer interview instrument

1, consumers 11 through 20 received instrument 4, consumers 21 through 30

79

were interviewed using instrument 2, consumers 31 through 40 were administered
instrument 5, consumers 41 through 50 received instrument 6, consumers 51
through 60 received instrument 3, and consumers 61 and 62 received consumer
interview instrument 1.

Open—ended questions concerning the types of recreational activities in
which the consumers currently participated, were posed during the final segment
of the interview. Consumers were asked what types of recreational activities they
participated in the most and with whom they participated in these activities. I
recorded consumers’ responses using a checklist provided on the interview tool;
responses also were audiotaped to avoid recording and interpretation errors
(Alreck & Settle, 1995). During the inquiry, I asked questions in a number of
different ways to elicit complete responses from the participants (W yngaarden,
1981). I avoided supplying suggestive answers while rephrasing the questions
because this might have biased the consumers’ responses (Malik et al., 1991;
Wyngaarden, 1981). In addition, value-oriented or abstract adjectives (e.g., wish,
prefer) were avoided because they are difficult for persons with mental retardation
to understand (Malik, 1990; Wyngaarden, 1981).

It took each participant approximately 15 to 20 minutes to complete the
consumer interview (Malik, 1990). If an interview took longer than that,
consumers were given a short break to avoid fatigue bias (Alreck and Settle,
1995).

When the interview was completed, a debriefing occurred to ensure
complete disclosure of the purpose of the interview. I reviewed the operational

definition of inclusion with each participant and asked whether he or she had any

80

questions. I then thanked the interviewee for participating and returned him or her
to the caregiver or work supervisor.

I replayed the audiotape immediately following the interview to ensure
accurate recording of the consumer’s responses. Audiotape recordings were then

erased.

Caregiver Survey Procedures

Following the caregiver pilot study, the caregiver instrument was
appropriately modified. AS in Wyngaarden’s (1981) study, the referring agency
helped me make initial contacts with the caregivers. Once the consumer
interviews were completed, I contacted the home managers or supervisors and
asked them to distribute surveys to caregivers who worked with individuals with
diagnosis of moderate and mild levels of cognitive impairments. Due to
confidentiality, no direct tie between a particular consumer and caregiver could be
made. However, consumers’ residences were identified and caregivers within
those homes were asked to complete the surveys. Home managers or supervisors
were informed of the operational definition of inclusion. Home managers were
asked to relay this to their Staff, and any questions were to be referred to me.
Caregivers completed the surveys voluntarily and returned them, in sealed
envelopes, to their supervisors, who in turn gave the completed surveys to me.
Because caregivers oversaw activities of several consumers and because some
consumers lived independently, I expected that fewer caregivers than consumers

would participate in this investigation.

81

Treatment of the Data
Data were analyzed using the Statistical Package for the Social Sciences
(SPSS) Version 10.0. Data-analysis techniques for each hypothesis are described
in this section.

1. Consumers do not prefer inclusive recreation service over noninclusive
recreation services.

Descriptive statistics, in the form of frequencies and percentages, were
used to identify the frequency with which consumers indicated they preferred
inclusive or noninclusion recreation services.

2. There is no difference between consumers’ preference for inclusive
recreation services, based on level of cognitive impairment.

Descriptive statistics, in the form of frequencies and percentages, were
used to compare consumers’ preferences for inclusion according to their
diagnostic group (i.e., moderate and mild cognitive impairment). Given the sum
of responses from each diagnostic group, an independent-sample t-test (at the .05
level of significance) was used to compare the preferences of the two groups for
statistical significance.

3. There is no difference in consumers’ preferences for inclusive recreation
services, based on their gender.

Descriptive Statistics, in the form of frequencies and percentages, were
used to compare male and female consumers’ preference for inclusion. Given the '
sum of responses from each gender group (male and female), an independent-
sample t-test (at the .05 level of significance) was used to compare the preferences

of the two groups for Statistical significance.

82

 

4. There is no difference in consumers’ preferences for inclusive recreation
services, based on their past involvement inclusive recreation experiences.

Descriptive statistics, in the form of frequencies and percentages, were
used to compare consumers’ preference for inclusion according to their past
involvement in inclusive recreational activity. The chi-square, nonparametric
statistical technique, at the .05 level of significance, was used to test the
relationship between consumers’ past involvement in inclusive recreation
activities and their preference for inclusion in each activity presented.

5. There is no dijference between consumers’ preferences for inclusive
recreation services, based on their type of residence.

Descriptive statistics, in the form of frequencies and percentages, were
used to compare consumers’ preferences for inclusion according to their living
accommodations. The chi-square, nonparametric statistical technique, at the .05
level of significance, was used to test the relationship between consumers’ type of
residence and their preference for inclusion in each activity presented.

6. There is no relationship between consumers’ preferences for inclusive
recreation services and their age.

Descriptive statistics, in the form of frequencies and percentages, were
used to compare the preferences for inclusion of consumers in various age groups.
The raw data (age) were compared to consumers’ preferences for inclusive
services (per activity) using the point-biserial correlation test at the .05 level of

significance (2-tailed).

83

 

7. Caregivers do not prefer inclusive recreation services over noninclusive
recreation services.

Descriptive statistics in the form of frequencies and percentages, were
used to identify the frequency with which caregivers indicated they preferred
inclusive or noninclusive recreation services.

8. Consumers and caregivers do not differ in their preferences for inclusive
recreation services.

Descriptive Statistics, in the form of frequencies and percentages, were
used to compare consumers’ and caregivers’ preferences for inclusion. Using the
sum of consumer responses and the sum of caregiver responses, a one-sample t-
test (at the .05 level of significance) was used to compare the preferences of the
two groups for statistical significance.

9. There is no difiference between caregivers’ preferences for inclusive
recreation services, based on their past involvement in inclusive
recreation services.

Descriptive statistics, in the form of frequencies and percentages, were
used to compare caregivers’ past involvement in inclusive recreation experiences
and their preferences for inclusive recreation services. The chi-square statistical
test, at the .05 level of Si gnificance, was used to determine whether there was a
significant relationship between caregivers’ past involvement in inclusive
recreation activities and their preference for inclusion for the wards under their

care.

10. There is no relationship between caregivers’ preferences for inclusive
recreation services and their years of experience as a caregiver.

Descriptive statistics, in the form of frequencies and percentages, were

used to compare the preferences for inclusion of caregivers with varying years of

84

experience. The raw data (years of caregiving) were compared to the preference
for inclusive recreation services (per activity) using the point-biserial correlation
test at the .05 level of significance (2-tailed).

11. There is no relationship between caregivers’ preferences for inclusive
recreation services and their age.

Descriptive Statistics, in the form of frequencies and percentages, were
used to compare caregivers’ preferences for inclusion according to their age
group. The raw data (age) were compared to caregivers’ preferences for inclusive
services (per activity) using the point—biserial correlation test at the .05 level of
significance (2-tailed).

12. There is no difference in caregivers’ preferences for inclusive recreation
services, based on their extent of training related to inclusion.

Descriptive statistics, in the form of frequencies and percentages, were
used to compare caregivers’ preferences for inclusion according to their extent of
training related to inclusion. The chi-square statistical test, at the .05 level of
significance, was used to determine whether there was a Significant relationship
between caregivers training and their preference for inclusion for the wards under

their care.

85

CHAPTER IV

Results

Introduction
My purpose in this investigation was to identify consumers’ and
caregivers’ preferences for inclusive over noninclusive recreation services.
Consumers in this study were people with moderate and mild levels of cognitive
impairment. This chapter provides a description of the sample groups (i.e.,
consumers and caregivers), the panel of experts, the panel of consumers, the
consumer pilot, the caregiver pilot, results of the primary investigation and

relationship to the hypotheses.

Sample Groups

Consumers Sampled

Referring agencies. Two community agencies located in the mid-
Michigan area were contacted to take part in this investigation. These
organizations acted as referring agencies to provide a contact for the people with
developmental disabilities and their guardians. The first agency assisted in
making contact with guardians to find people who might be interested in
modeling for the photographs that would later be used as pictorial cues in the
primary investigation. Four guardians were contacted and three gave positive
responses, allowing two males and one female to participate in the investigation

as models.

86

The second community agency was contacted to help me secure interested
participants for the consumer panel, the consumer pilot, and the primary Study.
This agency mailed 210 letters to guardians to seek permission for their children
(or wards) to participate in the interviews. Ninety-four positive responses were
obtained, representing a 44.7% response rate. From this group, 5 individuals
participated on the consumer panel, 7 individuals participated in the consumer
pilot, and 65 people were contacted to be interviewed in the primary
investigation. Of the 65 consumers contacted for the primary investigation, 3
refused to participate. The remaining consumers who had received their
guardians’ approval (n = 17) did not take part in the investigation because they
were difficult to contact or otherwise unable to participate (e.g., lacked a phone,
were employed at a community-based Site where an interview would be
inappropriate).

Models for the pictorial cues. The three people that participated as
models for the pictural cues were all diagnosed as having Down syndrome. The
referring agency reported that each person was between 25 and 45 years of age,
with a diagnosis of moderate or mild mental retardation. Specific demographic
information on the individuals was not made available to me.

Members of the consumer panel. The participants (n = 5) who agreed to
be members of the consumer panel ranged in age from 19 to 59 with a mean of 31
years. Four males and 1 female participated on the panel. Of that number, 3 of
them had diagnoses of mild mental retardation and 2 had diagnoses of moderate

mental retardation.

87

Members of the consumer pilot. Seven participants were involved in the
consumer pilot; 5 were male and 2 female. They ranged in age from 28 to 50
years, with a mean of 38 years. Six participants had a diagnosis of mild mental
retardation, whereas 1 was diagnosed with moderate mental retardation. When
the initial interview procedures were piloted, the participants (n = 2) displayed
considerable acquiescence. The procedures were modified, and these participants
were eliminated from the study. Two new people were secured to take part in the
pilot, maintaining the original number of 5 members to pilot the interview
procedures. Final pilot members ranged in age from 28 to 50 years, with a mean
age of 39 years. Four participants were diagnosed with mild cognitive
impairment, and 1 was diagnosed with moderate cognitive impairment.

Consumers for the primary investigation. Of the 62 individuals
interviewed as part of the primary investigation, the majority (69.4%, n = 43)
were male; 30.6% (n = 19) were female. Participants ranged in age from 18 to
73 years, with a mean of 42 years. Fifty-two percent (51.6%, n = 32) of the
participants had diagnoses of moderate mental retardation, whereas the others
(48.4%, n = 30) had diagnoses of mild cognitive impairment. The majority of
participants (41.9%) resided in group homes or adult foster care homes, others
(30.6%) lived in a state residential facility, 14.5% resided in semi-independent

apartment complexes, and 12.9% lived in private homes.

88

Caregivers and Individuals Wit/rout Disability Sampled

Models for the pictorial cues. I asked 3 individuals without disabilities to
participate as models for photographs that would later be used as pictorial cues in
the primary investigation. Two males and 1 female, aged 28 to 47 years, of
average height and weight, agreed to participate in this study as models.

Panel of experts. Six professionals employed in Michigan, agreed to
serve on the panel of experts. The panel was conveniently selected on the basis of
members’ background, expertise, and the types of job the individuals performed.
All panel experts had experience in programming with people with developmental
disabilities and currently were employed in positions serving adults with
developmental disabilities. The panel consisted of 2 therapeutic recreation
Specialists, 1 park and recreation professional who supervised a community-based
Special recreation program for people with developmental disabilities, 1
vocational rehabilitation Specialist, and 2 case managers. Panel members were
not familiar with any of the people displayed in the photographs.

Caregiver pilot. Five individuals were conveniently sampled to take part
in the caregiver pilot. Participants ranged in age from 20 to 82 years, with a mean
age of 51. Caregivers reported 2 to 52 years of experience working with people
with developmental disabilities, with an average of 22 years of experience in
caring for those with disabilities. Three were parents of people with
developmental disabilities and 2 cared for people with developmental disabilities

in group homes. Three pilot participants cared for adults with mild mental

89

retardation, 1 cared for a person with moderate mental retardation, and the third
cared for individuals with both mild and moderate cognitive impairment.

Caregivers for the primary investigation. Sixty-eight surveys were
delivered or mailed to caregivers of people with developmental disabilities.
Forty-six were completed and returned, yielding a response rate of 67.6%.
Caregivers who participated in the primary investigation ranged in age from 20 to
60, with a mean of 37 years. Caregivers reported that they had cared for people
with disabilities an average of nearly 10 years, with a range of 6 months to 30
years of service. Caregivers reported caring for people with developmental
disabilities in a state institution (30.4%), a group home or adult foster care (39.1
%), a semi-independent apartment complex (26.1%), and in private homes

(4.3%).

The Panel of Experts

The first Stage in this investigation was to ensure that the pictorial cues
(photographs) clearly represented the desired content. An expert panel was
therefore asked to look at each of the photographs and identify whether it was
easy to distinguish between people with and those without disabilities. Similarly,
they were also asked whether they believed that people with moderate and mild
levels of cognitive impairment would be able to recognize the people with and
without disabilities who were shown in the photographs. Finally, the experts
were asked to assess the photographs for any environmental distractions that

would direct a participant’s attention from the people in the photograph.

90

Because of feedback received from the expert panel, retakes were needed
for two of the photographs. Photo 2 (i.e., people with and without disabilities
bowling) and photo 4 (i.e., people with and without disabilities playing
basketball) required retakes because 3 (50%) of the panelists perceived that all
people in both photographs had disabilities. Regarding photo 2, panelists
commented that the facial expression of the individual without a disability made
them believe he had a disability. Comments from panelists regarding photo 4
indicated that the body posture and positioning of the person without a disability
made him appear as if he had a disability. All of the panelists (100%) reported
that photol (i.e., people with disabilities bowling), photo 3 (i.e., people with
disabilities playing basketball), photo 5 (i.e., people with disabilities watching
television), photo 7 (i.e., people with disabilities going for a walk), photo 8 (i.e.,
people with and without disabilities going for a walk), photo 9 (i.e., people with
disability listening to music), and photo 11 (i.e., people with disabilities working
on a craft) displayed the intended image or content. One panelist questioned the
content of photo 10 (i.e., people with and without disabilities listening to music)
and photo 12 (i.e., people with and without disabilities working on a craft).
However, these photographs did not require retakes because all of the other
panelists (83.3%) identified the correct content in both photographs. Another
panelist questioned whether people with mild or moderate impairment would
recognize photo 6 (i.e., people with and without disabilities watching television)
as showing a person without a disability holding the remote; this panelist said

“He’s holding the remote funny.” The same panelist consistently questioned

91

whether people with moderate mental retardation would be able to notice the

difference between people in the photographs.

The Panel of Consumers

Because of the feedback received from the expert panel, two of the
photographs were retaken. All of the photographs were then prepared for review
by a panel of consumers. All consumers (100%) on the panel were able to point
to the people in photographs numbered 4, 7, 8, 9, 10, 11, and 12 and identify the
people with and without disabilities. One individual each questioned the content
of photographs 1, 2, 3, 5, and 6. However, the other panelists (80%) correctly
identified the content of these photographs so no retakes were necessary.
Two of the 3 panelists with diagnoses of mild mental retardation were 100%
accurate in their review of the content of the photographs. Both individuals with
diagnoses of moderate mental retardation questioned the content of one
photograph each. The third person diagnosed as having mild mental retardation

questioned the content of three photographs.

The Consumer Pilot
Following the consumer and expert panels’ reviews of the photographs,
the procedures were reviewed for reliability and practicality (e.g., ease of use,
understanding, time, terminology). Five individuals were intended to be part of
the consumer pilot. The first 2 members of the pilot were interviewed using the
interview procedure verbatim. It was determined that probing questions, which

were intended to clarify consumers’ responses, only led to increased distraction,

92

incongruent responses, and increased acquiescence. Therefore, the interview
procedures were modified (i.e., probing questions were eliminated) and these 2
pilot members were eliminated from the investigation.

Five persons (1 with a diagnosis of moderate mental retardation and 4
with diagnoses of mild mental retardation) who were not members of the
instrument development (photograph models), the consumer panel, or the primary
study were conveniently sampled to take part in the consumer pilot (Dattilo, et al.,
1996). The new interview procedures were followed verbatim. A test-retest
method (Babbie, 1995) was used to assess the reliability of consumers’ responses
to the interview procedure. The first and second administrations of the
procedures were implemented 1 week apart. The alpha reliability coefficient was
found to be .58. Based on the small sample, this alpha level was considered
adequate. However, further analysis of the pilot test results also revealed a range
in individual congruency from 33% to 100%. A mean agreement rate of 71%
was found for individuals with mild cognitive impairment; whereas a 50%
agreement rate was found for people with moderate cognitive impairment. Per-
activity agreement ranged from 50% to 100%, with a mean of 72% congruency.
Finally, when the least congruent consumer responses were eliminated, the alpha

coefficient was found to be .66.

The Caregiver Pilot
Five individuals who cared for peOple with developmental disabilities

were conveniently sampled to take part in the caregiver pilot. This pilot study

93

was used to evaluate the caregiver questionnaire for ease of use, readability, and

reliability. All of the caregivers (100%) reported that the questions were easy to

read. One participant reported being unfamiliar with some of the terms used in

one question (e.g., mainstreaming, integration). However, no member of the pilot

recommended that questions be changed or reworded to make them easier to

understand. Therefore, the caregiver survey was not altered but was prepared for

administration to caregivers in the primary investigation.

The Results of the Primary Investigation and
Relationship to the Hypothesis

The following section provides a descriptive overview of the results of

this study related to each hypothesis. In addition, Table 4.1 provides a graphic

summation of the results of this study related to each hypothesis.

Table 4.1: Study results related to each hypothesis.

 

 

 

 

 

 

 

Hypothesis Result Direction

1. Consumers do not prefer inclusive Rejected. Consumers prefer

recreation services over noninclusive inclusion.

recreation services.

2. There is no difference between Not No difference between

consumers’ preferences for inclusive rejected. diagnostic groups.

recreation services, based on level of

cognitive impairment.

3. There is no difference between Not Males prefer inclusion

consumers’ preferences for inclusive rejected. more than females but no

recreation services, based on gender. statistically Significance
difference found.

 

94

 

Table 4.1 (con’t)

 

 

 

 

 

 

 

 

4. There is no difference in Not No difference between

consumers’ preferences for inclusive rejected. groups.

recreation services, based on their past

involvement in inclusive recreation

services.

5. There is no difference in Not Those living in more

consumers’ preference for inclusive rejected restrictive living

recreation services, based on type of environments prefer

residence. inclusion but the
difference was not found
to be statistically
significant.

6. There is no relationship between Rejected. Younger participants

consumers’ preferences for inclusive preferred inclusive

recreation services and their age. recreation. Older
participants preferred
noninclusive recreation.

7. Caregivers do not prefer inclusive Rejected. Caregivers prefer

recreation services over noninclusive inclusive recreation.

recreation services.

8. Consumers and caregivers do not Rejected. The degree to which

differ in their preferences fo inclusive caregivers prefer

recreation services. inclusion is much greater
than the degree that
consumers prefer
inclusion.

9. There is no difference in Not No difference between

caregivers’ preferences for inclusive rejected. those with experience and

recreation services, based on their past those without experience

involvement in inclusive recreation in inclusive recreation.

services.

10. There is no relationship between Not No statitically significant

caregivers’ preferences for inclusive rejected. difference. However,

recreation services and their years of more experienced

experience as a caregiver. caregivers preferred
inclsuion with basketball,
bowling, and crafts.

 

 

 

95

 

Table 4.1 (con’t)

 

11. There is no relationship between
caregivers’ preference for inclusive
recreation services and their age.

Not
rejected.

No statitically significant
difference. However,
more experienced
caregivers preferred
inclsuion with basketball,
bowling, and crafts.

 

 

12. There iS no relationship between
caregivers preferences for inclusive
recreation, based on the extent of
training related to inclusion.

Rejected.

 

 

Formal training related to
inclusion significantly
impacted a caregivers
preference for inclusive
bowling, basketball, and
crafts.

 

Hypothesis 1 .' Consumers do not prefer inclusive recreation services over
noninclusive recreation services.

Descriptive statistics suggested that consumers in this study preferred

inclusion over noninclusion. As illustrated in Table 4.2, inclusion was preferred

most often in bowling. The majority of consumers (64.5%) said they preferred

Table 4.2: Consumers’ preferences for inclusive recreation, according to
specific activities.

 

 

 

 

 

 

 

 

Activity (n = 62) % of Consumers Reporting
Preference for Inclusion Per
Activity Experience

Bowling (n = 40) 64.5%

Listening to music (n = 35) 565%

Going for a walk (n = 34) 54.8%

Basketball ('1 = 33) 53.2%

Watching television (n = 32) 51.6%

Working on a hobby (n = 30) 48.4%

 

 

 

 

inclusive bowling opportunities over noninclusive bowling experiences.

Respondents also reported preferences for inclusion while listening to music

96

 

(56.5%), going for a walk (54.8%), playing basketball (53.2%), and watching
television (51.6%). Participating in hobbies/crafts was the only activity in which
consumers reported a slight preference for noninclusive. With regard to working
on a craft or hobby, 48.4% of the consumers stated a preference for engaging in
this activity with individuals without a disability.

When activities were categorized as passive or active, the data continued
to reflect consumers’ preference for inclusive versus noninclusive recreation
opportunities. Specifically, 58.3% of the consumers said they preferred inclusion
when participating in physical activities (i.e., bowling, playing basketball, and
going for a walk). Similarly, 54.5% of those interviewed preferred inclusion
when engaging in passive activities (i.e., watching television, listening to music,
and participating in a hobby or craft).

Overall, an alpha reliability coefficient of .80 was obtained when
assessing the reliability of consumers’ responses concerning their preferences for
inclusive or noninclusive recreation. Thirty-seven percent (37%) of those
interviewed were 100% congruent in their preference for inclusion or
noninclusion. That is, 13 participants (21%) indicated a 100% preference for
inclusive services, whereas 10 (16.1%) indicated a 100% preference for
noninclusive services. Other consumers (16.1%) reported a preference for
inclusion in five out of the six activities presented, whereas 11.3% preferred
inclusion in four of the six activities presented. Nearly 13% (12.9%) preferred

inclusion in three of the Six activities presented, 14.5% preferred inclusion in two

97

of the six activities presented, and 8% preferred inclusion in one of the Six

activities presented.

Hypothesis 2: There is no difference between consumers ’ preferences for
inclusive recreation services, based on level of cognitive
impairment.

The hypothesis was not rejected. Using an independent-sample t-test no
statistically significant difference was found between diagnostic groups, given the
sum of consumers’ responses regarding their preference for inclusive or
noninclusive recreation experiences. In addition, using a stronger statistic (i.e.,
chi-square at the .05 level of significance), no statistically significant relationship
was found between diagnostic groups and the preference for inclusion within each
activity presented.

Participants diagnosed with mild cognitive impairment (n = 30) reported a
preference for inclusion while bowling (60%), playing basketball (56.7%), and
watching television (53.3%). As observed in Table 4.3 those individuals with
mild cognitive impairment stated a preference for inclusion in music and hobbies

50% of the time. Those with mild impairment were least likely to prefer

inclusion while going for a walk (46.7%).

98

 

 

 

 

 

 

 

Table 4.3: Consumers’ preferences for inclusion, according to consumer
diagnosis.
Activity Mild Moderate
(n = 30) (n = 32)
Bowling 60.0% 68.8%
Basketball 56.7% 50.0%
Walking 46.7% 62.5%
Watching TV 53.3% 50.0%
Listening to music 50.0% 62.5%
Completing crafts 50.0% 46.9%

 

 

 

 

 

In comparison, those individuals with moderate cognitive impairment (n =
32) reported a preference for inclusion while bowling (68.8%), listening to music
(62.5%), and going for a walk (62.5%). Equal responses were given for inclusion
while playing basketball (50%) and watching television (50%). Those with
moderate cognitive impairment were least likely to prefer inclusion when
engaged in a hobby or craft (46.6%).

Hypothesis 3: There is no difference between consumers’ preferences for
inclusive recreation services, based on gender.

The hypothesis was not rejected. Descriptive Statistics suggested that
males preferred inclusive recreation services more than did females. However, no
statistically Si gnificant relationship was found between preference for inclusive
recreation and gender. A chi-square, nonparametric test, at the .05 level of
significance, was used in analyzing each activity and gender. Also, the sum of

inclusive responses and gender were analyzed using an independent—sample t—test

99

(at the .05 level of Significance). In both analyses, no statistically significant
relationship was found.
As described in Table 4.4, males reported a greater preference for

inclusive recreation opportunities then did females (n = 19).

 

 

 

 

 

 

 

Table 4.4: Preference for inclusive recreation, based on gender.
Activity Male Female
Preferences Preferences
(n = 43) (n = 19)
Bowling 67.4% 57.9%
Listening to music 62.8% 42.1%
Basketball 58.1% 42.1%
Going for a walk 58.1% 47.4%
Watching television 53.5% 47.4%
Working on a craft 53.5% 36.8%

 

 

 

 

 

Males preferred inclusion when bowling (67.4%), listening to music (62.8%),
playing basketball (58.1%), going for walks (58.1%), watching television
(53.5%), and working on crafts (53.5%). Females preferred inclusive
opportunities when bowling (57.9%), viewing television (47.4%), going for walks
(47.4%), listening to music (42.1%), playing basketball (42.1%), and to a lesser
extent when working on crafts (36.8%).
Hypothesis 4: There is no difi‘erence in consumers’ preferences for inclusive
recreation services, based on their past involvement in inclusive
recreation services.

The hypothesis was not rejected. Using a chi-square, nonparametric test,

at the .05 level of Si gnificance, no statistically significant relationship was found

100

when comparing consumers’ preference for inclusion and their previous exposure
to inclusive recreation.

Sixty-nine percent (n = 43) of the consumers reported they participated
primarily in activities specifically designed for people with disabilities. The types
of noninclusive recreation experiences they reported included activities with
roommates and staff, special recreation involvement, recreation with co-workers
(with disabilities) sponsored by the refening agency, and participation in Special
Olympics. Nearly 10% (n = 6) of the consumers reported that they engaged in
activities considered inclusive. The inclusive experiences they reported were
activities they participated in with family members or best buddies who did not
have a disability. Eleven percent (n = 7) of the participants said they engaged in a
combination of inclusive and noninclusive recreation activities. The majority of
these experiences were activities with roommates and staff, a best buddy, a pen
pal, or a family member. Finally, 6.5% (n = 4) of those interviewed said they
participated in activities by themselves and denied participating in recreation
activities with members of their apartments or households.

The 43 participants who reported engaging in noninclusive recreational

activities also reported a preference for inclusion. As shown in Table 4.5, those

101

 

 

 

 

 

 

 

Table 4.5: Preferences for inclusive recreation, according to consumers'
previous involvement in inclusive recreational experiences.

Activity Experience Experience Experience Other (n=4)

With Non- With Both With

inclusion Inclusion and Inclusion

(n=43) Noninclusion (n=6)

(n=7)

Bowling 62.8% 71.4% 66.7% 50%
Basketball 58.1% 14.3% 50% 50%
Going for 53.5% 57.1% 50% 50%
Walks
Watching 51.2% 42.9% 50% 50%
Television
Listening to 51.2% 57.1% 66.7% 75%
Music
Working on 51.2% 28.6% 33.3% 50%
Craft

 

 

 

 

 

 

who participated primarily in noninclusive activities reported a preference for
inclusion while bowling (62.8%), playing basketball (58.1%), going for a walk
(53.5%), watching television (51.2%), listening to music (51.2%), and completing
crafts (51.2%). The participants who said their primary exposure to recreation
was inclusive had mixed opinions about their preference for further inclusion.
Specifically, those with the most inclusive experience (n = 6) preferred inclusion
while bowling (66.7%) and listening to music (66.7%). Equal responses for
inclusion were given for basketball (50%), watching television (50%), and going
for a walk (50%). This group least preferred inclusion when working on a craft
(33.3%). The 7 individuals who reported a history of engaging in both inclusive

and noninclusive activities also expressed varying interest in inclusive

102

 

recreational experiences. Seventy-one percent (71.4%) reported a preference for
inclusion while bowling, and 57.1% reported a preference for inclusion while
listening to music and going for a walk. On the other hand, this group was less
likely to prefer inclusion while watching television (42.9%), working on a craft
(28.6%), and playing basketball (14.3%). Four participants said they engaged in
recreation activities by themselves. These individuals reported they would prefer
inclusion while listening to music (75%), going for a walk (50%), bowling
(50%), playing basketball (50%), watching television (50%), and working on a
craft (50%).

Hypothesis 5: There is no difference in consumers’ preference for inclusive
recreation services, based on their type of residence.

The hypothesis was not rejected. Using a chi-square, nonparametric test,
at the .05 level of significance, no statistically Significant relationship was found
when comparing consumers’ preferences for inclusive recreation and their
residence type.

However, descriptive statistics showed that consumers living in the most
restrictive environments preferred inclusive recreation over noninclusive
recreation. Nineteen participants (30.6%) lived in a state-operated institution for

people with developmental disabilities. As illustrated in Figure 4.1 and Table 4.6,

103

100

 

90-

80-

 

  

 

 

% of Preferences for Inclusion

D BOWLING

’—

0 BASKETBALL

_ ° TELEVISION

 

‘ WALKING

 

' MUSIC

 

 

 

+ HOBBIES

 

Institution Group Home Apartment

Housing Type

Independent

Figure 4.1: Consumers’ preference for inclusive recreation according to type

of current residence.

104

 

 

 

 

 

 

 

Table 4.6: Consumers’ preferences for inclusive recreation according to type
of current residence.
Resident of
Resident of a Resident of a an Independent
State Group Apartment or Living
Activity Institution Home Complex With Parent
(n = 19) (n = 26) (n = 9) (n = 8)
Bowling 73.7% 61.5% 66.7% 50%
Basketball 63.2% 53.8% 44.4% 37.5%
Going for a 63.2% 53.8% 55.6% 37.5%
Walk
Watching 68.4% 46.2% 33.3% 50%
Television
Listening to 52.6% 61.5% 44.4% 62.5%
Music
Working on 57.9% 46.2% 44.4% 37.5%
a Craft

 

 

 

 

 

 

 

State home residents overwhelmingly preferred inclusion while bowling (73.7%),

watching television (68.4%), playing basketball (63.2%), going for a walk

(63.2%), working on crafts (57.9%), and listening to music (52.6%). Similar

results were noted for individuals who lived in group homes or adult foster care

facilities (n = 26). Group home residents preferred inclusion while bowling

(61.5%), listening to music (61.5%), playing basketball (53.8%), and going for a

walk (53.8%). Inclusion was less preferred by these individuals while working on

crafts (46.2%) or watching television (46.2%). Residents of apartment complexes

(n = 9) reported a preference for inclusion in bowling (66.7%) and walking

(55.6%). These residents least preferred inclusion while playing basketball

105

(44.4%), listening to music (44.4%), working on crafts (44.4%), and watching
television (33.3%). Participants who lived by themselves or with parents (11 = 8)
had varying preferences for inclusive recreation. They preferred inclusion only
when listening to music (62.5%). Equal preferences were expressed for inclusive
bowling (50%) and watching television (50%). Inclusion was least preferred
when playing basketball (37.5%), going for a walk (37.5%), and working on
crafts (37.5%).

Hypothesis 6: There is no relationship between consumers’ preferences for
inclusive recreation services and their age.

The hypothesis was rejected. A point-biserial correlation test, at the
.05 level of Si gnificance (2-tailed), was used to determine whether there was a
significant relationship between consumers’ age and their preference for
inclusion. Consumers’ age appeared to have an overwhelming influence on their
preference for inclusive or noninclusive recreational experiences. Specifically,
for all activities, a negative correlation was found between consumers’ age and
preference for inclusive experiences (see Table 4.7). The younger the participant,
the greater the preference for inclusion. Conversely, the older the person, the
greater the preference for noninclusion. Using the point-biserial correlation test,
comparing raw age and preference for inclusion, age was found to be significantly

correlated with preference for inclusion in bowling and television viewing.

106

 

 

 

 

 

 

 

Table 4.7: Correlation between age and preference for inclusive recreation.
Activity Correlation Significance
Bowling r = -.256* .046
Basketball r = -. 177 .171
Television viewing r = -.263* .041
Going for a walk r = -.118 .365
Listening to music r = -.046 .715
Working on a craft r = -.075 .563

 

 

 

 

 

*Correlation is Si gnificant at the .05 level (2-tailed).

Furthermore, when data related to consumer age were pooled, into lO-year

increments, an increased likelihood of preferring inclusion was found. As shown

in Table 4.8 and Figure 4.2, 100% of those persons 18 to 30 years of age reported

 

 

 

 

 

 

 

Table 4.8: Preferences for inclusive recreation, according to age groupings.

18-20 21-30 31-40 41-50 51-60 61-70 71-73

Activity years years years years years years years
(n = 1) (n = 13) (n = 11) (rt = 23) (n = 8) (n = 2) (n = 3)

Bowling 100% 100% 63.6% 47.8% 50.0% 50.0% 66.7%

Basket- 100% 84.6% 27.3% 47.8% 37.5% 50.0% 66.7%

ball

Walking 100% 76.9% 45.5% 43.5% 37.5% 100% 66.7%

Watching 100% 69.2% 72.7% 34.8% 37.5% 100% 0%

television

Listening 100% 76.9% 45.5% 43.5% 50.0% 100% 66.7%

to music

Craft 100% 76.9% 27.3% 39.1% 37.5% 100% 66.7%

work

 

 

 

 

 

 

 

 

 

107

 

120

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2~
E
d-l
2100. --—.— "T
a)
.2
In
‘3) 80. _
E , [:IBOWLING
I- . ' ‘l
g 60. .BASKETBALL
E 40' [jTELEVISION
a
9 .WALKING
0' 20
5 i EjMU$C
$

0 DHOBBIES

7 e
6390 ’19
\\ \\
’2 9

 

AGE GROUPINGS

Figure 4.2: Preference for inclusive recreation, based on age of caregiver.

a preference for inclusive bowling opportunities, and a large majority of this
group preferred inclusion in all of the activities presented. On the other hand,
persons over 30 expressed less preference for inclusion especially with reference
to basketball and working on a craft. This pattern of declining preference for
inclusion continued through the 605 but again tended toward inclusion among

those over 70.

108

Hypothesis 7: Caregivers do not prefer inclusive recreation services over
noninclusive recreation services.

Hypothesis was not supported. There was overwhelming descriptive
evidence that caregivers preferred inclusive recreation experiences for the people
under their care. As Shown in Table 4.9, caregivers preferred inclusion for their
clients while they engaged in television viewing (95.7%), going for a walk
(95.7%), listening to music (95.7%), bowling (93.5%), working on crafts (91.3%),
and playing basketball (88.9%). These preferences are compared with those of

consumers (by diagnostic group) in Table 4.9.

 

 

 

 

 

 

 

Table 4.9: Caregivers’ and consumers ’ preferences for inclusion.
Activity Mild (n = 30) Moderate (n = 32) Caregivers (n = 46)
Bowling 60.0% 68.8% 93.5%
Basketball 56.7% 50.0% 88.9%
Walking 46.7% 62.5% 95.7%
Watching 53.3% 50.0% 95.7%
television
Listening to 50.0% 62.5% 95.7%
music
Completing 50.0% 46.9% 91.3%
crafts

 

 

 

 

 

Caregivers were congruent and definitive in their reported preferences for

inclusive recreation. Specifically, the majority (82.6%) were 100% congruent in

their preference for inclusion in all of the activities presented. Nine percent

(8.7%) indicated they preferred inclusion in five out of the Six activities

presented. Nearly 7% reported a preference for inclusion in three out of the six

109

 

activities, and 2.2% of the caregivers preferred inclusion in only one of the six
activities presented.

The support for inclusive recreation was also evident in the subjective
comments caregivers added to their survey instrument. Caregivers were noted to
state “I’ve met people with developmental disabilities who . . . know more about
TV than me . . . have better taste in music than me . . . have a better average (in
bowling) than me . . . are more creative than me . . . are better sportsman than me

. notice more when they walk than me”. Based on these Statements and the
descriptive statistics it was clearly apparent that caregivers overwhelmingly
preferred inclusive recreation opportunities for the consumers under their care.

Hypothesis 8: Consumers and caregivers do not differ in their preferences for
inclusive recreation services.

The hypothesis was rejected. Comparing sums of preferences of
consumers and caregivers related to inclusion, a statistically significant difference
was found (p < .000) using a one-sample t-test at the .05 level of significance.
This analysis can further be described through the use of descriptive statistics.
Specifically, caregivers preferred inclusion for individuals under their care while
bowling (93.5%), playing basketball (88.9%), going for walks (95.7%), viewing
television (95.7%), listening to music (95.7%), and working on hobbies or crafts
(91.3%). Conversely, consumers preferred inclusion but to a lessor extent than
caregivers. Specifically, consumers preferred inclusion while bowling (64.5%),
playing basketball (53.2%), going for walks (54.8%), watching television

(51.6%), listening to music (56.5%), and working on a hobby or craft (48.4%).

110

These descriptive and Statistical findings support the overwhelming difference
between caregivers and consumers in their preferences for inclusive recreational
activity.

Hypothesis 9: There is no difference in caregivers’ preferences for inclusive
recreation services, based on their past involvement in inclusive
recreation services.

The hypothesis was not rejected. Using a chi-square test at the .05 level of

Si gnificance, no Statistically Si gnificant relationship was found when comparing

caregivers’ preferences for inclusive recreation for the people under their care and

their past involvement in inclusive recreation experiences. However, descriptive
statistics Show that caregivers who had more experience with inclusive
programming were found to be least likely to prefer inclusion for the wards under
their care. As shown in Table 4.10, caregivers who said they had no experience

Table 4.10: Caregivers’ experience with inclusive recreation and their
preference for inclusion.

 

 

 

 

Level of Working
Experience Playing Watching Listening on
With Bowling Basketball Walking TV to Music Crafts
Inclusion

No 100.0% 100.0% 100.0% 100.0% 100.0% 100.0%
experience

(n = 3)

Some

experience 90.5% 90.0% 95.2% 95.2% 95.2% 85.7%
(n = 9)

Much

Experience 95.0% 85.0% 95.0% 95.0% 95.0% 95.0%
(n = 33)

 

 

 

 

 

 

 

 

 

with inclusion preferred inclusion for their wards 100% of the time when

bowling, watching television, going for a walk, listening to music, or working on

111

crafts. Those caregivers reporting some experience with inclusion preferred

inclusion least when their wards engaged in craft activities (85.7%). Caregivers

who reported much experience with inclusive recreation preferred inclusion the

least with playing basketball (85%).

Hypothesis 10: There is no relationship between caregivers’ preference for
inclusive recreation services and their years of experience
as a caregiver.

The hypothesis was not rejected. NO statistically significant relationship

was found between years as a caregiver and preference for inclusion. Using a

point-biserial correlation test, at the .05 level of significance (2-tailed), a negative

relationship was found between years as a caregiver and preference for inclusion
in television viewing, listening to music, and going for a walk. Even though the
results were not significant, the data suggest that the fewer the years Of
caregiving, the more likely caregivers were to prefer inclusion when their wards
engaged in listening to music, going for a walk, and watching television.

Conversely, a positive relationship was found with reference to inclusion in

playing basketball, working on crafts, and bowling. That is, more experienced

caregivers had a greater likelihood of preferring inclusion when their wards

engaged in bowling, working on crafts, and playing basketball.

Hypothesis 11: There is no relationship between caregivers ’ preferences
for inclusive recreation services and their age.

The hypothesis was not rejected. In assessing the relationship between
caregiver age and preference for inclusion, no Statistically significant relationship

was found, using a point-biserial correlation test, at the .05 level of Si gnificance

112

(2-tailed). However, as with years of caregiving, negative correlations were
found with television viewing, going for walks, and listening to music, whereas
positive correlations were found with playing basketball, working on crafts, and
bowling. Similar conclusions can be drawn from these data as were Stated for
length of caregiving. In other words, the younger the caregivers, the more they
preferred inclusive television viewing, listening to music, and going for walks.
On the other hand, older caregivers were more likely to prefer inclusive bowling,
working on crafts, and playing basketball for the wards under their care.

This analysis was further described by pooling caregiver data related to
age in 10 year increments. Caregivers 20-29 (n = 15) preferred inclusion for the
consumers under their care while bowling (93.3%), playing basketball (92.9%),
watching television (100%), going for walks (100%), listening to music (100%),
and working on crafts (86.7%). Caregivers 30-39 years (n = 9) preferred
inclusion for the individuals under their care while bowling ( 88.9%), playing
basketball (66.7%), watching television (100%), going for walks (100%),
listening to music (100%), and working on crafts (88.9%). Caregivers 40 - 49 (n
= 11) years of age preferred inclusion for the people under their care while
bowling (90.9%), playing basketball (100%), watching television (90.9%), going
for walks (90.9%), listening to music (90.9%), and in craft work (90.9%).
Caregivers 50- 59 (n = 6) preferred inclusion while their wards bowled (100%),
played basketball (83.3%), watched television (83.3%), went on walks (83.3%),
listened to music (83.3%), and worked on crafts (100%). Finally, the caregiver

60 years and older (n = 1) preferred inclusive recreation for the individuals under

113

their care when bowling (100%), playing basketball (100%), watching television

(100%), going for walks (100%), listening to music (100%), and working on

crafts (100%).

Hypothesis 12: There is no relationship between caregivers’ preferences
for inclusive recreation, based on the extent of training
related to inclusion.

The hypothesis was rejected. Using a chi-square, nonparametric test, at
the .05 level of significance (2-tailed), a statistically significant relationship was
found between caregiver training and preference for inclusive bowling (x2 = .002),
basketball (x2 = .029), and crafts (x2 = .010). These data suggest that formal
training had a significant influence on caregivers’ preference for inclusion for the
wards under their care. A Si gnificant relationship was not found between
caregiver training and preference for inclusive television viewing, walking, or
listening to music.

The majority of caregivers (80.4%) reported having received formal
classroom training to perform their jobs. Nine percent (8.7%) of caregivers
reported no training, another 8.7% reported on-the-job training, and 2.2%
reported having other relevant training (e.g., certified nurses-aide training).
Caregivers who reported receiving formal instruction indicated they had received
training in least restrictive services (58.7%), normalization (56.5%), age-
appropriate activity (54.3%), integration (52.2%), and inclusion (50%).
Appropriate to the changes in service delivery models, caregivers reported less

training in mainstreaming (i.e., 34.8% received this training).

114

Summary

Caregivers (n = 46) overwhelmingly preferred inclusion for the wards
under their care. Consumers (n = 62) appeared to prefer inclusive recreation, but
not to the degree that caregivers did. A significant difference (p < .000) was
found between caregivers’ and consumers’ preferences for inclusion. It appeared
that caregivers’ preferences for inclusion were directly correlated with the type of
training they had received. In fact, statistical significance was noted when
comparing differences in caregivers’ preferences for inclusion in bowling,
playing basketball, and working on crafts, based on their formal classroom
training related to inclusion. No significance was found when comparing
caregivers’ preferences for inclusion and their age, years of experience as a
caregiver, or past involvement in inclusive recreation services. The analysis did,
however, suggest a correlation between caregivers’ years of caregiving, and age,
and their preference for inclusion in bowling, playing basketball, and working on
crafts.

Consumer data suggested a preference for inclusion over noninclusion but
not enough to be statistically significant. In addition, no Significance was found
when comparing differences in preferences, based on level of cognitive
impairment, gender, past involvement in inclusive recreation services, and type of
residence. However, based on descriptive statistics, it appeared that more males
than females preferred inclusion, and that consumers living in group homes or
state institutions preferred inclusive recreation to a greater degree than those

living in less restrictive home environments. Statistical significance was found

115

when comparing the relationship between consumers’ age and their preference for

inclusion in bowling and television viewing.

116

CHAPTER V

Conclusions and Discussion

Purpose

My purpose in this study was to identify consumers’ and caregivers’
preferences for inclusive over noninclusive recreation services. Preferences for
inclusion were compared with consumers’ level of cognitive impairment, gender,
past involvement in inclusive recreation services, type of residence, and age.
Preferences for inclusion also were compared with caregivers’ years of
experience as a caregiver, past involvement in inclusive recreation services, age,
and extent of training related to inclusion. Comparisons also were made between
the sum of preference for inclusion by consumers and the sum of preference for

inclusion by caregivers.

Conclusions

Caregivers Preferences for Inclusive Recreation

Caregivers overwhelmingly preferred inclusive versus noninclusive
recreation services for the individuals under their care. Specifically, descriptive
Statistics revealed that caregivers preferred inclusive recreation activities 89% -
96% of the time. The majority (82.6%) were 100% congruent in their preferences
for inclusive versus noninclusive recreation services. In addition, subjective data
from caregivers revealed an advocacy for consumer abilities versus limitations.

The hypothesis related to caregiver preference for inclusion was rejected

117

therefore providing supportive evidence of the attitudinal impact of the literature
related to legislation advocating inclusion (i.e., ADA, 1990; IDEA 1997) and the
conceptual framework of person-centered planning (O’Brien et a1, 1997 ; Hewitt
& O’Nell, 1998), self-determination (Head, 2003), social role valorization
(Wolfensberger, 1983), and normalization (W olfensberger, 1972).

Self-determination, normalization, and social role valorization are
conceptually grounded on the premise that people with developmental disabilities
should be empowered to be active contributing members of their community. In
this study caregivers preferred inclusive versus noninclusive recreation
experiences suggesting that caregivers perceive greater opportunities for
enhanced social roles when consumers are provided with inclusive recreation
opportunities. This assumption suggests that caregivers believe that inclusion
enhances ones’ social image and social role. Therefore, supporting the constructs
of social role valorization and person-centered planning, the desire for inclusive
recreation is perceived by caregivers as an opportunity to demonstrate consumer
skills and abilities versus deficits and disabilities thus enhancing their social role
and social image.

Further conclusions can be drawn from activity based descriptive
statistics. Regardless of the activity presented, caregivers preferred inclusive over
noninclusive recreation services. Caregivers indicated they preferred inclusion
most when consumers watched television, listened to music, and went for a walk.
On the other hand, caregivers were least likely to prefer inclusion when

consumers played basketball. This assumption is suggestive that caregivers

118

prefer inclusion when activities are passive and implemented in environments
close to home. This result was consistent with the literature that suggests that
consumers engage in activities which are passive and implemented indoors in
their place of residence (Dattilo & Hoge, 1995; Malik, 1990; Sparrow & Mayne,
1990). However, the same result was inconsistent with the literature which
suggests that consumers prefer to engage in activities which are physical in nature
and implemented in the out-of-doors or in community-based environments
(Dattilo & Hoge, 1995; Sarrow & Mayne, 1990). In addition, the literature on
leisure constraints suggests that consumers do not engage in community activities
due to a lack of opportunity, transportation, activity skills, equipment, decision-
making, companions, and finances (Hawkins et al., 1999; Sparrow & Mayne,
1990; Verpillot & Dattilo, 1995).

Based on the literature and the results of this Study, it appears that
caregivers preferences could have an overwhelming influence on the recreation
participation patterns of consumers. Even though caregivers report a preference
for inclusive recreation, they may control the type inclusive recreation
experiences made available to the consumers under their care. This pattern of
caregiver control is inconsistent with the conceptual framework of person-
centered planning and self-determination. Therefore, suggesting the need for
formal training to provide caregivers with the skills and knowledge necessary to

successfully implement community-based leisure activities.

119

Caregivers Preferences Based on Past Experience With Inclusive Recreation

Even though not statistically significant, caregivers reporting experience
in programming inclusive recreation were least likely to prefer inclusion for the
individuals under their care. Specifically, caregivers reporting much and some
experience programming inclusive recreation preferred inclusion for the
individuals under their care 85% to 95% of the time. Conversely, those
caregivers (n = 3) with no reported experience providing inclusive recreation
preferred inclusive activities 100% of the time. Those caregivers reporting some
experience programming inclusive recreation were least likely to prefer inclusive
crafts and most likely to prefer inclusive television viewing, music listening, and
walks. Those caregivers identifying much experience programming inclusive
recreation were least likely to prefer inclusive basketball.

On the surface, the results suggests that past experiences with inclusive
recreation had limited impact on caregivers’ preferences for inclusive services.
However, this interpretation should be guarded since only 3 of the participating
caregivers reported no experience and 9 reported some experience in
programming inclusive recreation services. By combining the data from the
majority of caregivers more logical conclusions may be drawn. The data from
caregivers with much (n = 33) and some (n = 9) experience suggests that
caregivers are least likely to prefer inclusion when activities are physically
challenging and complex in nature. In addition, the data from those caregivers

with some experience suggests that caregivers were more likely to prefer

120

inclusion when recreational pursuits were passive in nature and able to be
implemented close to the consumers home. These results are similar to previous
results and further support the need for enhanced caregiver training to assist in
fostering a variety of positive community-based leisure opportunities that are

based on consumer choice and empowerment.

Caregivers Preferences Based on Years of Experience

Caregivers with the most experience caregiving identified a greater
preference for inclusive bowling, basketball, and crafts. Caregivers with the least
experience caregivin g identified a greater preference for inclusion in passive,
home based, and easy to implement activities (i.e., listening to music, watching
television, and going for a walk). This data suggests that experienced caregivers
perceive greater comfort in implementing inclusive experiences that are active,
more complex, and community-based. Conversely, caregivers with limited
experience perceive greater comfort in implementing inclusive experiences that
are passive, less skilled, and may be implemented in locations close to home.

These results continue to suggest that caregivers are advocates of
inclusion but may be unsure of implementation strategies needed to successfully
program inclusive recreation opportunities for the individuals under their care.
This appears to be especially true when caregivers are expected to implement
recreation activities that are physically active, complex, and community-based.
The results suggests this was particularly true in caregivers with limited years of

experience caring for individuals with developmental disability.

121

Caregivers Preferences Based on Caregiver Age

The results of this study reveal that older caregivers have a greater
preference for inclusion when their consumers bowl, play basketball, and work on
crafts. Conversely, younger caregivers identify a greater preference for inclusion
when consumers watch television, listen to music, and go for a walk. AS with
years of experience in caregiving, the younger caregiver appears to advocate
inclusion in passive, home-based activities that are relatively easy to implement.
On the other hand, the older caregiver appears to advocate inclusion in more
active, complex, and community-based activities (i.e., basketball, bowling,
crafts). The data continues to reveal that caregivers value inclusion, regardless of
age and years of experience. However, the less experienced, younger caregiver
supports inclusion in activities that are passive and home based. Whereas the
older, more experienced caregiver supports inclusion in active, community-based
recreation pursuits. Concluding that younger caregivers have enhanced need for
training that would support their abilities to implement recreation in physically

active, community-based, leisure pursuits.

Caregiver Preference and Degree of Training

Finally, a statistically significant difference was found between caregiver
training (i.e., formal classroom) and their preference for inclusive bowling,
basketball, and crafts. This data suggests that formal education, versus on-the-job

training, positively impacts the caregivers preferences for inclusive recreation

122

services which are physically active, complex, and often implemented in
community-based facilities. This, combined with literature related to leisure
constraints and consumer participation patterns, provides further evidence that
formal education related to inclusive recreation will positively influence the

preference for inclusion in challenging community-based leisure activities.

Summary of Caregiver Preferences

Based on the results of this Study, caregivers overwhelmingly preferred
inclusive recreation for the individuals under their care. Conclusions drawn from
subjective data suggests that caregivers perceived that inclusive experiences
foster positive social images due to a focus on consumers’ abilities versus
disabilities. However, caregivers of younger age and less experience preferred
inclusion most when consumers watched television, listened to music, or went for
walks. Conversely, caregivers with increased experience and age preferred
inclusion most when consumers played basketball, bowled, or worked on crafts.
Thus concluding that caregivers value inclusion but younger caregivers and
caregivers of limited experience would benefit from enhanced formal training to
better supervise and instruct persons under their care in community-based
recreation activity that is physically active and complex in nature. In addition,
this study revealed that formal classroom instruction was the most effective

training strategy influencing caregiver preference for inclusion.

123

Consumer Preference for Inclusive Recreation

Descriptive Statistics suggests that consumers with developmental
disabilities prefer inclusive recreation but not to the same extent as their
caregivers. Consumers reported a near 50% or greater preference for inclusion
with all presented activities. Interesting conclusions were drawn when comparing
the preference for inclusion and noninclusion as it relates to specific activities.
Consumers were more likely to prefer inclusion when bowling and less likely to
prefer inclusion when working on crafts. This outcome appears logical since
bowling is available in most communities, is relatively easy to perform (i.e., gross
motor versus fine motor), and provides Opportunities for socialization and off-task
behavior. On the other hand, craft work involves increased fine motor Skills,
concentration, on-task behavior, is implemented at home, and is outcome versus
process based. These results suggests that consumers prefer inclusion when
activities are social, gross motor in orientation, and provide opportunity for off-
task behavior.

In addition, Since bowling is available in most communities, people with
developmental disabilities have greater opportunities to participate in bowling,
perceiving increased competencies and Skills and thus having an increased desire
for inclusive bowling experiences. This outcome supports the principle of
mainstreaming (Smith et al., 1996; Vaughan & Winslow, 1979), which advocates

Skill development before inclusive opportunities.

124

Consumer Preferences and Gender

Contrary to previous literature (Sparrow & Mayne , 1990), descriptive
statistics suggested that gender influenced consumers’ preferences for inclusive
recreation services. Males preferred inclusion to a greater extent than did
females. This outcome could be the result of the fewer female (n = 19)
participants involved in this study and the comparative age range of female
participants (i.e., 25 to 58 years). However, the results may also suggest that
gender inequities have affected people with disability to a Similar extent as people
without disabilities. The historical belief that males are more competitive may
influence their desire for increased inclusive opportunities. Conversely, the
historical notion that females avoid risk taking and prefer to engage in activities
in their homes may also influence females’ preferences for noninclusive
recreational experiences. Gender choices may also be explained through
caregiver influences. As with other areas of gender identity, the influences of
caregivers on leisure preference and patterns may have an overwhelming impact
on the directional decision-making of the consumer. In other words, if the
caregiver prefers inclusive recreation opportunities the consumer is more likely to

be influenced to make similar choices for self.

Consumer Preference Based on Diagnosis
No statistical significance was found when comparing consumers’

preference for inclusion with their diagnoses (i.e., moderate or mild mental

125

retardation). That is, Similar proportions of consumers with moderate cognitive
impairment and those with mild cognitive impairment preferred inclusion.

Persons with mild cognitive impairment reported they preferred inclusion
least while walking and most while bowling and playing basketball. Consistent to
the leisure preference research of Sparrow and Mayne (1990), the preference for
inclusive bowling and basketball suggests a desire for inclusion during activities
that are physical, competitive, community-based, and social in nature. The desire
to be equal competitors with peers without disabilities may be a consumer interest
as evidenced by the preference for inclusive bowling and basketball. The
preference for noninclusive walking suggests an effect of previous training and
increased freedom of movement given to individuals with less cognitive deficits.
Understandably, those with mild cognitive impairment are more likely to
independently walk to and from work, receive pedestrian training services, and
have greater freedom of movement as compared to persons with greater cognitive
deficits.

Comparatively, those persons with moderate cognitive impairment were
more likely to prefer inclusion while engaged in bowling, walking, and listening
to music. This diagnostic population preferred inclusion the least while engaging
in crafts or hobbies. With the exception of bowling, these data suggests that
people with increased cognitive deficits prefer inclusion in activities that are
implemented closer to home (i.e., listening to music, going for a walk), passive,

and less demanding cognitively.

126

In addition, the fact that both diagnostic groups (i.e., moderate & mild
mental retardation) most preferred inclusive bowling suggests the desire for
participation with able-bodied peers in a social, gross motor, community-based
activity. Conversely, the fact that both diagnostic groups least preferred inclusive
crafts reinforces the fact that consumers do not prefer inclusive activities which
require increased cognitive effort (i.e., concentration, on-task behavior) and

complex physical skills (i.e., fine motor, eye-hand coordination).

Consumer Preference Based on Consumer Age

A significant correlation was found when comparing consumers’ age to
their preference for inclusion in bowling and television viewing. In addition, the
analysis suggested that the younger the consumer, the greater the preference for
inclusive recreation services. Conversely, this analysis also suggested a
preference for noninclusive recreation among middle aged (i.e., 30 to 60 years)
consumers with developmental disabilities. This outcome can be directly related
to the inclusive movement and suggests the persuasive influence of changing
service delivery models (i.e., self-determination, person-centered planning),
legislation related to nondiscrimination (i.e., Rehabilitation Acts of 1973; 1978;
ADA of 1990), enhanced training of persons with disabilities, and advocacy of
inclusion in schools (i.e., IDEA, 1997), community rehabilitation agencies, and
other organizations serving individuals with disabilities. Understandably, the
older the consumer the higher the likelihood that they would have engaged in

noninclusive services in their youth. Consumers over 30 years of age were more

127

likely to be exposed to self-contained Special education classrooms, sheltered
employment, special recreation services, and large group or institutional living
environments. Since exposure and past practices mold individual preferences I
would expect a greater preference for noninclusive recreation services among
older consumers. This effect suggests that increased exposure to inclusive
opportunities in early life carry over into a desire for a preference for inclusive
opportunities with age (Edwards & Smith, 1989; Kleiber et al., 1990; McAvoy et

al., 1989; Sowers & Powers, 1992).

Consumer Preference Based on Living Environments

On the basis of descriptive statistics, those individuals living in the most
restrictive environments (i.e., state institutions and group homes) were most likely
to prefer inclusive recreation services. On the other hand, people who lived in
apartments or independently were less likely to prefer inclusion. One might
conclude that consumers from apartments and independent living situations had
been empowered by increased choices and decision-making opportunities.
Conversely, individuals residing in more restrictive living environments prefer
inclusion due to a lack of empowerment and decision-making opportunities.
These results provide support of previous research which explores the value of
empowerment and decision-making (Phillips, 1992) on the lives of persons with
developmental disability.

When preferences were analyzed per activity, individuals living in

apartments preferred inclusion most when bowling and least when viewing

128

television, playing basketball, listening to music, or working on crafts. Based on
current and previous findings, apartment residents appear to prefer inclusion
when bowling because it is social and community-based. On the other hand, the
fact that the same consumers (i.e., apartment residents) preferred noninclusion in
4 of the 6 activities presented suggests a need for further analysis. Even though
not specifically evident in this research, residents of apartments may prefer
noninclusive recreation due to difficulty negotiating the constraints that are
associated within maintaining a home, working, and scheduling and organizing
leisure experiences. Previous research indicates that transportation (Hawkins et
al., 1999; Sparrow & Mayne, 1990), finances (Hawkins et al., 1999; Sparrow &
Mayne, 1990; Taylor et al., 1986) fatigue (Hawkins et al., 1999), lack of skill,
resource awareness (Hawkins et al., 1999; Sparrow & Mayne, 1999), and lack of
companions (Hawkins et al., 1999) are common constraints for persons with
developmental disability when attempting to pursue leisure activities. These
constraints may not only cause barriers to an active leisure lifestyle but in turn
cause barriers to inclusive leisure opportunities. 1

Finally, consumers living with family or independently preferred inclusion
most when listening to music and least when playing basketball, going for a walk,
or working on a craft. These results suggests that consumers residing in the least
restrictive living environments preferred inclusion most with passive activities
and least with activities that are more physically complex and require increased

on-task behaviors. Concluding that consumers residing independently or with

129

family members may not be empowered to engage in physical, complex, and

cognitively oriented activities with able-bodied peers.

Consumer Preference Based Upon Previous Involvement in Inclusive Recreation
In responses to open-ended questions, consumers reported they engaged
primarily in activities that were noninclusive. The activities they reported
involved participation in leisure pursuits with home staff and other people from
their place of residence. However, the majority of caregivers perceived that
consumers engaged primarily in inclusive recreation services. This discrepancy
in responses might have arisen because caregivers believed that inclusion
occurred when they (the caregivers) engaged in community-based activities with
the individuals under their care. This perception is contrary to the true spirit of
inclusion, which promotes the development of social relationships between
people with and without disabilities excluding caregivers. According to the
theory of normalization (Wolfensberger,]972; 1983; 1995a), paid caregivers
cannot act as substitutes for inclusive partners. The relationships that are
established through buddy programs, pen pals, and other partnerships (Bork,
1989; Sable & Gravink,1995; Salzberg & Langford,1981) should foster
friendships and enhance the role of persons with disabilities by giving them
opportunities to contribute and be valued as members of groups, activities, or

communities.

130

Reliability of Consumer Data

Finally, data obtained from consumers in this Study were recognized as
congruent and reliable, supporting the principles of consumer empowerment, self-
determination, and person-centered planning. In this investigation, reliability was
calculated using the percentage of consumer agreement (i.e., preferences for) to
inclusive recreation services. A reliability coefficient of .807 was obtained,
supporting the use of closed-ended, either—or questioning supported by pictorial
cues (Sigelman & Budd, 1986; Sigelman et al., 1982; Wadsworth & Harper,
1991) when interviewing people with cognitive impairments. In addition, the
results of this study suggest that people with mental retardation are able to make
personal choices for themselves related to their leisure preferences. Therefore,
supporting the intention, value, and mission of person-centered planning and self-

determination.

Summary of Consumer Preferences

Consumers preferred inclusion but not to the same degree as their
caregivers. Consumers preferred inclusion most while bowling concluding that
consumers preferred inclusion when activities involved gross motor skills,
socialization, and were community-based. Consumers least preferred inclusion
when engaged in crafts, concluding that consumers preferred inclusion least when
activities were passive, required increased cognitive efforts, and required complex

physical skills.

131

Individuals with mild cognitive impairment were more likely to prefer
inclusive activities that were physical, competitive, social, and implemented in
community environments (i.e., bowling, basketball). With the exception of
bowling, individuals with moderate cognitive impairment were more likely to
prefer inclusion in activities that were passive, less cognitively demanding, and
implemented close to home (i.e., listening to music, going for a walk).

Even though not Statistically significant, there was evidence to conclude
that males preferred inclusive recreation to a greater degree than females. This
data suggests that gender inequities have affected people with disabilities to a
similar extent as people without disabilities.

Younger consumers were more likely to prefer inclusive recreation
services while middle-aged (i.e., 30 - 60 years) consumers were more likely to
prefer noninclusive recreation services. These results were no doubt the influence
of changing service delivery models that advocate and provide inclusive services.
Concluding that increased exposure to inclusive opportunities in early life
increased the desire for inclusive opportunities in later life.

Individuals with developmental disability living in more restrictive
environments were more likely to prefer inclusive recreation services.
Conversely, those individuals living in least restrictive environments were more
likely to prefer noninclusive recreation services. It may be concluded that those
living in more restrictive environments prefer inclusion as it represents decision-
making and empowerment. On the other hand, those residing in less restrictive

environments have increased opportunities for empowerment and decision-

132

making and are empowered to choose their preferences based on their skills,
wishes, and aspirations. However, the concern that emerges with this conclusion
was that consumers residing in apartments have increased barriers to leisure
activity which may negatively impact their preference for inclusive leisure
opportunities.

Finally, the results of this study clearly suggest that consumers with
moderate and mild cognitive impairment are reliable decision makers.
Concluding that individuals within these diagnostic groups Should be encouraged
to be active decision makers involving leisure choices, training, and service

evaluation.

Discussion, Implications, and Recommendations

Contributions to the Body of Knowledge

This was the first known Study which explored consumers’ preferences for
inclusive versus noninclusive recreation services. The consumers participating in
this investigation had diagnoses of either moderate or mild mental retardation. In
addition, this study explored and compared the preferences of caregivers for
inclusive versus noninclusive recreation services.

The findings revealed that consumers generally preferred inclusive
recreation but not to the degree that a statistically significant relationship was
found between the consumers’ preferences for inclusion and their diagnosis,
gender, past experience with inclusive recreation, and housing. However, a

statistically Si gnificant relationship was found when comparing consumers age

133

and their preferences for inclusive bowling and television viewing. Descriptive
statistics revealed that younger (18 - 30 years) consumers reported a preference
for inclusion while middle aged (31 - 60 years) consumers reported a preference
for noninclusion. This data reveals the Significant influence of legislation which
have, over the past 30 years, advocated inclusion and changed consumer service
delivery models for persons with developmental disabilities. Descriptive data
revealed that males preferred inclusive recreation to a greater extent than females.
In addition, consumers that lived in group homes and state institutions were more
likely to prefer inclusion when compared to individuals that lived in apartment
complexes or by self or with family members. In responses to open-ended
questions, consumers revealed they did not participate in inclusive recreation
activities. On the contrary, the majority of consumers reported they engaged in
activities with home staff and other people from their place of residence or
employment. Finally, when calculating the percent of consumer agreement to
inclusive recreation services a reliability coefficient of .807 was obtained. This
data overwhelmingly supports the fact that consumers with diagnoses of moderate
and mild cognitive impairment are reliable sources of information related to
personal choice and preferences in leisure.

This study additionally revealed that caregivers overwhelmingly preferred
inclusive recreation services for the consumers under their care. However, no
statistically significant relationship was found between caregivers’ preferences
for inclusion and their experience implementing inclusive recreation, years of

experience as a caregiver, and their age.

134

Descriptive Statistics revealed that younger caregivers and caregivers with
less experience were more likely to prefer inclusion when consumers listened to
music, watched television, and went for a walk. On the other hand, older
caregivers and caregivers with more experience were more likely to prefer
inclusion when consumers played basketball, bowled, and worked on crafts.
Suggesting that caregivers with increased experience and age were more likely to
prefer inclusive recreation when activities were physical, social, and community-
based. Conversely, those caregivers with fewer years of experience were more
likely to prefer inclusive recreation when activities are passive, less complex, and
implemented close to home.

In addition, descriptive Statistics revealed that the majority of caregivers
reported much experience in programming inclusive recreation services. Yet,
data from consumers revealed that they engaged primarily in noninclusive
recreation Opportunities. This outcome suggests that caregivers may not fully
understand the definition of inclusion as it was defined for this investigation.

A statistically significant relationship was found when comparing
caregiver preference for inclusive recreation to formal classroom training related
to inclusion. This result suggests that formal classroom training is an effective
training when empowering the attitudes of caregivers related to consumer
services.

Finally, when comparing the sum preferences of caregivers to consumers,
related to inclusion, a statistically Significant difference was found. This data

reveals that both study groups (i.e., caregivers and consumers) preferred inclusive

135

recreation but caregivers’ preferences for inclusive recreation was much greater

than consumers’ preferences for inclusive recreation.

Theoretical Contributions

On the basis of caregiver inquiry, the results of this investigation support
the influence of legislation advocating inclusion, the evolution of person-centered
planning and self determination, and the theories of normalization and social role
valorization. Caregivers overwhelmingly preferred inclusion with all activities
presented. Subjectively, caregivers supported the abilities versus limitations and
disabilities of consumers. Caregivers preferred inclusion at a Statistically greater
rate than their consumers. These results revealed that caregivers are advocates of
inclusive recreation but may not be able to implement well rounded community-
based leisure activities for the consumers under their care. The fact that younger
caregivers and caregivers with less experience prefer inclusion with passive,
home-based recreational pursuits suggests that these caregivers may not possess
the skills and knowledge necessary to successfully implement inclusive activities
that are physically active, complex, or community-based. The investigator must
also question caregiver insight related to the philosophical principals that guide
and direct the inclusive process. The principals of mainstreaming and inclusion
are grounded on assuring that services are implemented in the most normal and
least restrictive environments. In addition, the principals of normalization and
social role valorization are grounded on evidence that people are valued based on

their social role and contributions to activities, groups, and their communities.

136

Caregivers preferring the implementation of inclusive recreation in their home are
not allowing individuals with disability to become active contributing members of
their communities. The results of this investigation suggests that younger, less
experienced caregivers are well meaning but may not have the skills, knowledge,
and resources needed to successfully implement community-based inclusive
recreation services. The residual effect is that consumers are more likely to be
denied access to a variety of functional, life-long, community-based, inclusive
leisure opportunities.

Another noted concern revealed in this investigation is the fact that the
majority of caregivers reported much experience programming inclusive
recreation while the majority of consumers revealed minimal experience with
inclusive recreation. The investigator concludes that caregivers may be unclear
of the true definition of inclusion as it was used in this investigation. One can
conclude that caregivers believed that inclusion occurred when they (the
caregivers) engaged in community-based activities with the consumers under
their care. This perception is contrary to the true spirit of inclusion, which
promotes the development of social relationships between people with and
without disabilities. According to the theory of normalization, paid caregivers are
not legitimate substitutes for inclusive partners.

Implications and Recommendations for Recreation Services
for People with Developmental Disabilities
On the basis of the results from the consumer inquiry, community-based

therapeutic recreation services should provide a combination of special recreation

137

and inclusive recreation programs. Special recreation (i.e., noninclusive
recreation) may be geared to middle-aged or older individuals with
developmental disabilities. Inclusive services Should be the primary focus of
services delivered to persons 30 years and younger. Best buddies, pen pals, and
organizational partnerships are supported in the literature as successful inclusive
recreation strategies and should be continued.

Past service delivery models for community-based therapeutic recreation
have focused on the process of mainstreaming (Broida, 1995; Richardson et al.,
1987; Schleien & Green, 1992; Vaughan & Winslow, 1979), with the goal to
ensure the development of prerequisite recreation and social skills prior to
moving a person into an inclusive model of service delivery. Past history and the
nature of developmental disability have Shown that these approaches, even though
well intended, rarely enable a person with a disability to move beyond segregated
(i.e., noninclusive) programming. The buddy system (Salzberg & Langford,
1981) has been effective, but it requires considerable self-direction from the able-
bodied buddy to facilitate a continuation in services. Therefore, the buddy
approach remains effective only when the person without a disability is
committed to the relationship he or She has with the person with a disability and
has the time and energy to direct recreational activities without intervention from
the recreation or therapeutic recreation department.

Therefore, it is recommended that practical approaches to inclusive
recreation services be implemented and evaluated for effectiveness. Pilot

programs that combine the best practices of the current literature are encouraged.

138

Evaluation that assures the input of the involved consumers with disabilities and
partners without disabilities are highly recommended.

As with person-centered planning, individual wishes, aspirations, and
skills Should be considered when providing services to people with and without
developmental disabilities. Consumers Should be asked what they prefer in
regards to recreational activities offered by therapeutic recreation or recreation
departments. Recreation professionals should consider consumers’ opinions and
wishes by actively engaging them in interest surveys, needs assessments, and
other forms of program review and evaluation. Practitioners are reminded that
consumer data in this study were considered highly reliable suggesting that
consumers with diagnosis of moderate or mild mental retardation Should be
empowered to assist in decision making related to programming and recreation
service delivery. Practitioners are also encouraged to consider the role consumer

might play on departmental advisory and policy-making boards.

Implications and Recommendations for Services to Caregivers

Based on the results of caregiver inquiry, therapeutic recreation
specialists, inclusion specialists, home supervisors, case managers, and
supervisors of caregivers are encouraged to create opportunities to educate
caregivers about alternate types of inclusive recreation services. Providing
inservice training, to group home Staff and others, is one strategy professionals
could take to enhance the knowledge of caregivers related to inclusive recreation

services. In particular, training should be provided to caregivers with minimal

139

experience caregiving and those Of younger age. Training should focus on
Strategies to successfully facilitate inclusion in activities that are physically
active, social, cognitively complex, require fine motor effort, and are
implemented in community-based environments.

In addition, caregiver training should focus on the true definition of
inclusion and its’ applications in a recreation setting. Caregivers Should be
educated that inclusion occurs when consumers engage in activity with able-
bodied peers. Caregivers should be reminded that they (i.e., the caregiver) cannot
act in the capacity of a leisure buddy and meet the expectations of inclusion,

normalization, and social role valorization.

Implications for Research

Future research is needed to further investigate the degree to which
consumers with developmental disabilities prefer inclusive recreation services.
The results of this Study suggest that consumers prefer inclusion most in bowling
and least in crafts. Future research, at local levels, should explore the preferences
for inclusion in a variety of programming areas. Research should also represent
preferences of individuals within broader age groups with a focus on adolescents
and teens since these age groups were not represented in the current study.

Future researchers may also wish to explore the constraints or barriers that
inhibit a consumer from actively engaging in inclusive recreation experiences.
This study suggests that consumers in apartment complexes may experience

increased constraints secondary to the responsibilities associated with maintaining

140

a home. Research exploring the barriers and negotiation patterns of individuals
within various living accommodations Should be explored to better assist persons
with disabilities in managing their leisure time.

Research should also explore the variables that foster a successful
inclusive experience. An appropriate investigation would explore the support
mechanisms that are most successful in fostering inclusion for consumers with
developmental disabilities. Research should explore the type of activities that are
best in fostering a successful inclusive experience (e.g. competitive versus
noncompetitive, passive versus active, community-based versus non community-
based, clinics versus extended programs).

On the other hand, research Should explore the strategies that facilitate
positive experiences for persons without disabilities or inclusive buddies.
Researchers Should focus on the effectiveness of Specific partner training and
support mechanisms that assist in assuring a successful inclusive experience for
people without disabilities. Research Should also explore the motives that
initially encourage individuals to become inclusive buddies. In addition, research
should explore the benefits and constraints of being an inclusive buddy. With this
knowledge, programs can be designed to enhance the benefits of such
partnerships for both the consumer and the person without disability.

In addition, it is important to compare the various forms of inclusion that
are advocated in the literature and are recommended as a result of this study (e.g.,
buddy programs, transitional services, zero exclusion). Research comparing the

success of these strategies will develop best- practice techniques that can be used

141

to successfully foster inclusion for people with developmental disabilities. As
stated previously, a thorough evaluation of these programs should involve the
consumers, able-bodied participants, and caregivers.

Finally, this study offers additional evidence that consumers with
moderate and mild cognitive impairment are reliable reporters of their
preferences. Future research should explore the leisure wishes, desires, and
aspirations of persons with developmental disability through consumer interviews
including closed-ended and Open-ended questioning. In particular, future
research examining the validity of open-ended questioning with this consumer
group is highly recommended. In addition, consumers with more severe
cognitive impairments should be included in future research and evaluated for

reliability and validity of self report.

142

APPENDIX A

Photograph Release

143

Inclusive Recreation Services
The Preferences of Consumers and Caregivers
A Comparison Study

Consent to Photograph

You agree to allow Mary Lou Schilling to take and use photographs
of yourself (or your ward) as part of a research project related to inclusive
recreation services. The photographs to be taken will Show you
participating in bowling, listening to music, watching television, working
on a craft or hobby, taking a walk, and playing basketball. Your name will
not be used with any of the photographs or in any published documents
about this research project.

It is expected that it may take up to 2 hours to complete all the
photographs. To thank you for your time and involvement in this project
you will receive a small gift from the investigator. Your participation is
voluntary and you may quit at any time. If you remove yourself from this
project, all photographs taken of you will be destroyed. Having yourself
photographed presents no known risks.

The photographs will be used throughout a research investigation
(May 2002 through September 2002) asking people if they would prefer to
engage in inclusive or non-inclusive recreation. The photographs will be
published in Mary Lou Schilling’s dissertation. They will be stored in a
locked cabinet and password protected computer, in the locked office of
Mary Lou Schilling. The photographs may also be used in state, national,
or international publications for up to 5 years following the completion of
this research project. The photographs will be appropriately destroyed
(shredded) and deleted 5 years following the completion of this project.

If you have any questions about this project, do not hesitate to
contact the primary investigators at:

Mary Lou Schilling Dr. Richard Paulsen

1058 W. Deerfield Rd. 131 Natural Resources Building,
M.S.U

Mt. Pleasant, MI, 48858 East Lansing, MI, 48824-1222

Phone: (989) 773-2151 Phone: (517) 353-5190 ext. 114

144

If you have any questions regarding your rights as a participant, or
are dissatisfied with this project, you may contact:

Ashir Kumar, M.D.
Chair of the University Comrrrittee on
Research Involving Human Subjects (UCRIHS)
202 Olds Hall, M.S.U.
East Lansing, MI, 48824
Phone: (517) 355-2180
Fax: (517) 432-4503
e-mail: <ucrihs@msu.edu>

Your signature below indicates that you voluntarily agree to
participate in this study. Your signature also allows Mary Lou Schilling to
take and use the completed photographs for only the purposes stated above.

Participant Signature: Date:
Responsible Party: Date:

(Necessary if participant is 17 years or not his/her own guardian)

Person presenting or reading this document to the participant:

 

Date:

 

cc: participant

145

APPENDIX B

Pictorial Cues (Photographs)

146

Appendix B: Photographs 1 and 2

Photograph 1

VERINF'C

N
A
nIu
H
n/c
M

IL
0
w

 

Photograph 2

 

I47

Photographs 3 & 4.

Photograph 3

 

Photograph 4

 

148

Photographs 5 & 6

Photograph 5

 

Photograph 6

 

Photographs 7 & 8.

Photograph 7

 

Photographs 9 & 10.

Photograph 9

    
 

MICHIGAN
WOLVERINES ‘

 

Photograph 10

 

151

Photographs 11 & 12.

Photograph 11

 

Photograph 12

 

152

APPENDIX C

Panel of Experts Survey Tool

153

Appendix C: Panel of Experts Survey Tool

Introduction and Instructions:

You are asked to assist in the development of a tool which will be used
when questioning people with mental retardation. The purpose of the inquiry is to
investigate whether people with mental retardation prefer inclusive or non-
inclusive recreation experiences. The attached photographs will be used as
pictorial cues in the questioning process.

Since you have a great deal of experience in servicing people with mental
retardation, I’d like your input on the clarity of the photographs represented.
Please look at each photograph separately and respond to all questions presented
below. The photographs are numbered 1 through 12.

This survey is expected to take approximately 15 minutes to complete.
Please return your responses to me in the enclosed, self-addressed envelope, by
(date). Your participation in this investigation is greatly appreciated.

Photograph #1: People bowling:

1. It is obvious that both people bowling have
disability? Yes No

Ix.)

Do you believe a person with moderate or
mild cognitive impairment will recognize
that people in the photograph have disability? Yes NO

3. What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other, please identify

(
(
(
(

 

4. Does this photograph represent a non-inclusive
recreation experience? Yes N o

5. If you responded ‘no’ to question #4, please provide suggestions for photo
improvement.

154

Photograph #2: People bowling:

1.

It is obvious that one person bowling has
a disability and the other is without disability? Yes

Do you believe a person with moderate or

mild cognitive impairment will recognize that

one person in this photograph has a disability

while the other person does not have disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

(
(
(
(

 

Does this photograph represent an inclusive
recreation experience? Yes No

No

No

If you responded ‘nO’ to question #4, please provide suggestions for photo

improvement.

155

Photograph #3: People playing basketball:

I.

Ix)

It is obvious that both people playing
basketball have disability? Yes

Do you believe a person with moderate or
mild cognitive impairment will recognize
that people in the photograph have disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

(
(
(
(

 

Does this photograph represent a non-inclusive
recreation experience? Yes No

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement.

156

Photograph #4: People playing basketball:

I.

It is obvious that one person playing
basketball has a disability and the other is
without disability? Yes

Do you believe a person with moderate or

mild cognitive impairment will recognize

that one person in this photo has a disability

while the second person has no disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

AAA/K

 

Does this photograph represent an inclusive
recreation experience? Yes No

NO

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement

157

Photograph #5: People watching television:

1.

It is obvious that the people watching
television have disability? Yes

Do you believe a person with moderate or
mild cognitive impairment will recognize
that people in the photograph have disability? Yes

What feature is most emphasized in this photograph?
) the people

) the activity

) the environment

) other; please identify

(
(
(
(

 

Does this photograph represent a non-inclusive
recreation experience? Yes No

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement.

158

Photograph #6: People watching television:

1.

It is obvious that two people watching
television have disability while the third
person is without disability? Yes

Do you believe a person with moderate or
mild cognitive impairment will recognize
that 2 people in this photo have disability
while the third person is without disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

 

Does this photograph represent an inclusive
recreation experience? Yes N o

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement

159

Photograph #7: Going for a walk.

1.

It is obvious that all people in this
photograph have disability? Yes

Do you believe a person with moderate or
mild cognitive impairment will recognize
that people in the photograph have disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

AAAA

 

Does this photograph represent a non-inclusive
recreation experience? Yes No

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement.

160

Photograph #8: Going for a walk.

1.

It is obvious that two people in this photo
are without disability while the third person
has a disability? Yes

Do you believe a person with moderate or
mild cognitive impairment will recognize
that 1 person in this photo has a disability
while the others are without disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

AAA/K

 

Does this photograph represent an inclusive
recreation experience? Yes No

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement

161

Photograph #9: Listening to music.

1.

It is obvious that both people in this
photograph have disability? Yes

Do you believe a person with moderate or
mild cognitive impairment will recognize
that the people in this photograph have disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

 

Does this photograph represent a non-inclusive
recreation experience? Yes No

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement.

162

Photograph #10: Listening to music.

1.

It is obvious that one person in this photo
has a disability while the other person is
without disability? Yes

Do you believe a person with moderate or
mild cognitive impairment will recognize
that 1 person in this photo has a disability
while the other has no disability? Yes

What feature is most emphasized in this photograph?
( ) the people

( ) the activity

( ) the environment

( ) other; please identify

 

Does this photograph represent an inclusive
recreation experience? Yes No

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement

163

Photograph #11: Craft or hobbies.

1.

It is obvious that both people in this
photograph have disability? Yes

Do you believe a person with moderate or
mild cognitive impairment will recognize
that the people in this photograph have disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

(
(
(
(

 

Does this photograph represent a non-inclusive
recreation experience? Yes No

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement.

164

Photograph #12: Craft or hobbies.

1.

It is obvious that one person in this photo
has a disability while the other person is
without disability? Yes

Do you believe a person with moderate or

mild cognitive impairment will recognize

that one person in this photo has a disability

while the other has no disability? Yes

What feature is most emphasized in this photograph?
) the people
) the activity
) the environment

) other; please identify

AAA/K

 

Does this photograph represent an inclusive
recreation experience? Yes No

No

No

If you responded ‘no’ to question #4, please provide suggestions for photo

improvement

165

APPENDIX D

Consumer Panel

166

Appendix D: Consumer Panel

“Hi. I’m here to ask your help with a project. I’m going to use pictures to help
people answer questions about the things that they do for fun. I need to make sure
that the pictures are clear and easy to understand. I’d like you to help me
evaluate the pictures. Could you look at my pictures and answer some questions I
have about them? Does that sound OK. with you? Do you have any questions?”

“Before we start, I want you to know that answering my questions won’t hurt you
in any way and your answers won’t change the services you receive. I also want
you to know that your name won’t be used with any of the information you share
with me. If you want to quit or need a break, just let me know. We can stop and
take a break whenever you need to.”

“All right, here’s what we’re going to do. I’m going to ask you some questions
about these photographs (Show photos). I’m going to write your answers down on
this piece of paper (Show the interview instrument). Sometimes I’m going to use
a tape recorder (Show the tape recorder). I’m taping so that I can be sure I write
down exactly what you say.”

“Do you understand?”
“Do you have any questions?”

1. Tool evaluation:

The interviewer will hold upright, toward the participant, the photographs
in pairs. The following open-ended questions will be asked to determine if
the participant can recognize unique differences in the people in the
photographs. Specifically, the investigator wishes to know whether the
participant can distinguish the people, in the photographs, with and
without disability. The investigator will record, verbatim, the responses of
the participant for each photo set. This segment of the interview will be
tape-recorded, and later replayed for accuracy.

167

Present photo #1 (in left hand) and #2 (in right hand) and ask the
following questions in progression. The interviewer can proceed to the
last question (# 5) once the participant indicates that they recognize people
with and without disability in the photographs.

1. “Look at the people in the pictures. Do you see a difference in the
people in the photographs. Tell me about the difference.”

2. “What are the differences in the people in the photographs?”
3. “Look at the people, how are they different?”

4. “Do any of the people in the photograph have a disability?”
5. “Point to the people in the photograph that have a disability.”

168

Present photo #3 (in left hand) and #4 (in right hand) and ask the
following questions in progression. The interviewer can proceed to the
last question (# 5) once the participant indicates that they recognize people
with and without disability in the photographs.

1. “Look at the people in the pictures. Do you see a difference in the
people in the photographs. Tell me about the difference.”

2. “What are the differences in the people in the photographs?”

3. “Look at the people, how are they different?”

4. “Do any of the people in the photograph have a disability?”

5. “Point to the people in the photograph that have a disability.”

169

Present photo #6 (in left hand) and #5 (in right hand) and ask the
following questions in progression. The interviewer can proceed to the
last question (# 5) once the participant indicates that they recognize people
with and without disability in the photographs.

1. “Look at the people in the pictures. Do you see a difference in the
people in the photographs. Tell me about the difference.”

2. “What are the differences in the people in the photographs?”
3. “Look at the people, how are they different?”

4. “Do any of the people in the photograph have a disability?”
5. “Point to the people in the photograph that have a disability.”

170

Present photo #8 (in left hand) and #7 (in right hand) and ask the
following questions in progression. The interviewer can proceed to the
last question (# 5) once the participant indicates that they recognize people
with and without disability in the photographs.

1. “Look at the people in the pictures. Do you see a difference in the
people in the photographs. Tell me about the difference.”

2. “What are the differences in the people in the photographs?”
3. “Look at the people, how are they different?”

4. “Do any of the people in the photograph have a disability?”
5. “Point to the people in the photograph that have a disability.”

171

Present photo #9 (in left hand) and #10 (in right hand) and ask the
following questions in progression. The interviewer can proceed to the
last question (# 5) once the participant indicates that they recognize people
with and without disability in the photographs.

1. “Look at the people in the pictures. Do you see a difference in the
people in the photographs. Tell me about the difference.”

2. “What are the differences in the people in the photographs?”
3. “Look at the people, how are they different?”

4. “Do any of the people in the photograph have a disability?”
5. “Point to the people in the photograph that have a disability.”

172

F. Present photo #12 (in left hand) and #11 (in right hand) and ask the
following questions in progression. The interviewer can proceed to the
last question (# 5) once the participant indicates that they recognize people
with and without disability in the photographs.

1. “Look at the people in the pictures. Do you see a difference in the
people in the photographs. Tell me about the difference.”

2. “What are the differences in the people in the photographs?”
3. “Look at the people, how are they different?”

4. “Do any of the people in the photograph have a disability?”
5. “Point to the people in the photograph that have a disability.”

The panel participant will be thanked for their participation and returned to
their caregiver (as appropriate).

173

APPENDIX E

Consumer Interview Instrument

174

Appendix E:
Consumer Interview Instrument #1

Demographic data (obtained from chart review immediately prior to the
interview)

1. Consumer primary diagnosis (/ the appropriate box):
CI Mild Mental Retardation
D Moderate Mental Retardation

 

 

2. Consumer age:
3. Participants type of residence (/ the appropriate box):
CI State operated institution
CI Group home/adult foster care home
D Semi-independent apartment
CI Private home (with biological or adopted parents)
C] Other (identify):
4. Gender (/ the appropriate box):
CI Male
CI Female
Introduction:

“Hi. My name is Mary Lou Schilling. I am wondering if you would be
willing to answer some questions about recreation activity. Your guardian (name)
have agreed to your participation. There are no right or wrong answers. It will
take approximately 15 minutes to complete. You can quit at any time. What you
tell me is confidential. Your answers will not change the services you receive
from the referring agency. If you’d like to participate, please Sign the release
form, next to the name of your guardian”.

Rapport building:

“Tell me about yourself, do you work at (participating agency name)?
What type of jobs do you do? Do you enjoy your work? What do you like best
about work?”

175

What recreational activities do you participate in?

Special Olympics (non-inclusive)

Special Olympics Unified Sports (inclusive)

Best Buddies (inclusive)

Family activities - with family members without disability
(inclusive)

Family activities - with group home members (non-inclusive)
Combination (50-50)

Other:

DUB DUDE

 

Comments:

“I’m going to Show you some photographs of people participating in fun
activities. Looking at the people in the pictures, point to who you want to
participate in activities with the most?”

 

 

 

 

 

 

 

 

Question: Picture # Picture #
in left in right
hand hand
# 2 # 1

Bowling

Basketball # 4 # 3

Watching # 5 # 6

Television

Going for a # 7 # 8

walk

Listening to # 10 # 9

music

Craft # 11 # 12

 

 

 

 

176

 

Debriefing:

To assure complete disclosure of the interview intent the following will be
reviewed with the consumer. “Do you know what inclusion is?” and “How do
you define inclusion?” If the consumer response differs from the operational
definition used in this investigation the investigator will provide the consumer
with the following content.

“For purposes of this study, I am defining inclusion as participation in
recreation activity directly with people with and without disability. In example,
for bowling to be inclusive, people with and without disability would have to
bowl together, on the same lane, on the same team. Just being in the same
bowling alley with people with and without disability is not considered inclusive.
Do you understand? Do you have any questions? This study was to see whether
you prefer inclusive or non-inclusive recreation services.”

The interviewer will assure consumer is under the care of the caregiver

and answer any questions either might have. Thank both consumer and caregiver
for their participation.

177

Appendix E:
Consumer Interview Instrument #2

Demographic data (obtained from chart review immediately prior to the
interview)

1. Consumer primary diagnosis (/ the appropriate box):
CI Mild Mental Retardation
CI Moderate Mental Retardation

 

 

2. Consumer age:
3. Participants type of residence (/ the appropriate box):
E] State operated institution
C] Group home/adult foster care home
CI Semi-independent apartment
CI Private home (with biological or adopted parents)
CI Other (identify):
4. Gender (/ the appropriate box):
CI Male
CI Female
Introduction:

“Hi. My name is Mary Lou Schilling. I am wondering if you would be
willing to answer some questions about recreation activity. Your guardian (name)
have agreed to your participation. There are no right or wrong answers. It will
take approximately 15 rrrinutes to complete. You can quit at any time. What you
tell me is confidential. Your answers will not change the services you receive
from the referring agency. If you’d like to participate, please Sign the release
form, next to the name of your guardian”.

Rapport building:

“Tell me about yourself, do you work at (participating agency name)?
What type of jobs do you do? Do you enjoy your work? What do you like best
about work?”

178

What recreation activities do you participate in?

Special Olympics (non-inclusive)

Special Olympics Unified Sports (inclusive)

Best Buddies (Unified Sports)

Family activities - with family members without disability
(inclusive)

Family activities - with group home members (non-inclusive
Combination (50 - 50)

Other:

ODD DUDE]

 

Comments:

“I’m going to Show you some photographs of people participating in fun
activities. Looking at the people in the pictures, point to who you want to
participate in activities with the most?”

 

 

 

 

 

 

 

 

Question: Picture # Picture # Comments
in left in right
hand hand

Bowling # 2 # 1

Basketball # 3 # 4

Watching # 6 # 5

Television

Going for a # 8 # 7

walk

Listening to # 10 # 9

music

Craft # 11 # 12

 

 

 

 

179

 

Debriefing:

To assure complete disclosure of the interview intent the following will be
reviewed with the consumer. “Do you know what inclusion is?” and “How do
you define inclusion?” If the consumer response differs from the operational
definition used in this investigation the investigator will provide the consumer
with the following content.

“For purposes of this study, I am defining inclusion as participation in
recreation activity directly with people with and without disability. In example,
for bowling to be inclusive, people with and without disability would have to
bowl together, on the same lane, on the same team. Just being in the same
bowling alley with people with and without disability is not considered inclusive.
Do you understand? Do you have any questions? This study was to see whether
you prefer inclusive or non-inclusive recreation services.”

The interviewer will assure consumer is under the care of the caregiver
and answer any questions either might have. Thank both consumer and caregiver
for their participation.

180

Appendix E:
Consumer Interview Instrument #3

Demographic data (obtained from chart review immediately prior to the
interview)

1. Consumer primary diagnosis (I the appropriate box):
CI Mild Mental Retardation
CI Moderate Mental Retardation

 

 

2. Consumer age:
3. Participants type of residence (/ the appropriate box):
D State Operated institution
CI Group home/adult foster care home
CI Semi-independent apartment
Cl Private home (with biological or adopted parents)
CI Other (identify):
4. Gender (/ the appropriate box):
CI Male
CI Female
Introduction:

“Hi. My name is Mary Lou Schilling. I am wondering if you would be
willing to answer some questions about recreation activity. Your guardian (name)
have agreed to your participation. There are no right or wrong answers. It will
take approximately 15 minutes to complete. You can quit at any time. What you
tell me is confidential. Your answers will not change the services you receive
from the referring agency. If you’d like to participate, please Sign the release
form, next to the name of your guardian”.

Rapport building:

“Tell me about yourself, do you work at (participating agency name)?
What type of jobs do you do? Do you enjoy your work? What do you like best
about work?”

181

 

 

What type of recreation activities do you participate in?

Special Olympics (non-inclusive)

Special Olympics Unified Sports (inclusive)

Best Buddies (Unified Sports)

Family activities - with family members without disability

Family activities - with group home members (non-inclusive
Combination (50 - 50)

 

Cl

Cl

Cl

Cl

(inclusive)

Cl

C]

CI Other:
Comments:

“I’m going to Show you some photographs of people participating in fun
activities. Looking at the people in the pictures, point to who you want to
participate in activities with the most?”

 

 

 

 

 

 

 

 

Question: Picture # Picture # Comments
in left in right
hand hand

Bowling # 1 # 2

Basketball # 4 # 3

Watching # 6 # 5

television

Going for a # 7 # 8

walk

Listening to # 10 # 9

music

Craft # 12 # 11

 

 

 

 

182

 

Debriefing:

To assure complete disclosure of the interview intent the following will be
reviewed with the consumer. “Do you know what inclusion is?” and “How do
you define inclusion?” If the consumer response differs from the operational
definition used in this investigation the investigator will provide the consumer
with the following content.

“For purposes of this study, I am defining inclusion as participation in
recreation activity directly with people with and without disability. In example,
for bowling to be inclusive, people with and without disability would have to
bowl together, on the same lane, on the same team. Just being in the same
bowling alley with people with and without disability is not considered inclusive.
Do you understand? Do you have any questions? This study was to see whether
you prefer inclusive or non-inclusive recreation services.”

The interviewer will assure consumer is under the care of the caregiver
and answer any questions either might have. Thank both consumer and caregiver
for their participation.

183

Appendix E:
Consumer Interview Instrument #4

Demographic data (obtained from chart review immediately prior to the
interview)

1. Consumer primary diagnosis (I the appropriate box):
CI Mild Mental Retardation
C] Moderate Mental Retardation

2. Consumer age:

 

3. Participants type of residence (/ the appropriate box):

 

CI State operated institution
CI Group home/adult foster care home
Cl Semi-independent apartment
D Private home (with biological or adopted parents)
D Other (identify):
4. Gender (/ the appropriate box):
CI Male
CI Female
Introduction:

“Hi. My name is Mary Lou Schilling. I am wondering if you would be
willing to answer some questions about recreation activity. Your guardian (name)
have agreed to your participation. There are no right or wrong answers. It will
take approximately 15 minutes to complete. You can quit at any time. What you
tell me is confidential. Your answers will not change the services you receive
from the referring agency. If you’d like to participate, please Si gn the release
form, next to the name of your guardian”.

Rapport building:

“Tell me about yourself, do you work at (participating agency name)?
What type of jobs do you do? Do you enjoy your work? What do you like best
about work?”

184

What type of recreation activities do you participate in?

Special Olympics (non-inclusive)

Special Olympics Unified Sports (inclusive)

Best Buddies (Unified Sports)

Family activities - with family members without disability
(inclusive)

Family activities - with group home members (non-inclusive
Combination (50 - 50)

Other:

DUE] DUDE

 

Comments:

“I’m going to Show you some photographs of people participating in fun
activities. Looking at the people in the pictures, point to who you want to
participate in activities with the most?”

 

 

 

 

 

 

 

 

Question: Picture # Picture # Comments
in left in right
hand hand

Bowling # 2 # 1

Basketball # 3 # 4

Watching # 5 # 6

television

Going for a # 8 # 7

walk

Listening to # 10 # 9

music

Craft # 12 # 11

 

 

 

 

 

185

 

Debriefing:

To assure complete disclosure of the interview intent the following will be
reviewed with the consumer. “Do you know what inclusion is?” and “How do
you define inclusion?” If the consumer response differs from the operational
definition used in this investigation the investigator will provide the consumer
with the following content.

“For purposes of this study, I am defining inclusion as participation in
recreation activity directly with people with and without disability. In example,
for bowling to be inclusive, people with and without disability would have to
bowl together, on the same lane, on the same team. Just being in the same
bowling alley with people with and without disability is not considered inclusive.
Do you understand? Do you have any questions? This study was to see whether
you prefer inclusive or non-inclusive recreation services.”

The interviewer will assure consumer is under the care of the caregiver
and answer any questions either might have. Thank both consumer and caregiver
for their participation.

186

Appendix E:
Consumer Interview Instrument #5

Demographic data (obtained from chart review immediately prior to the
interview)

1. Consumer primary diagnosis (I the appropriate box):
CI Mild Mental Retardation
CI Moderate Mental Retardation

2. Consumer age:

 

O)
"U

articipants type of residence (/ the appropriate box):

 

CI State operated institution
CI Group home/adult foster care home
CI Semi-independent apartment
CI Private home (with biological or adopted parents)
C] Other (identify):
4. Gender (/ the appropriate box):
CI Male
CI Female
Introduction:

“Hi. My name is Mary Lou Schilling. I am wondering if you would be
willing to answer some questions about recreation activity. Your guardian (name)
have agreed to your participation. There are no right or wrong answers. It will
take approximately 15 minutes to complete. You can quit at any time. What you
tell me is confidential. Your answers will not change the services you receive
from the referring agency. If you’d like to participate, please Sign the release
form, next to the name of your guardian”.

Rapport building:

“Tell me about yourself, do you work at (participating agency name)?
What type of jobs do you do? Do you enjoy your work? What do you like best
about work?”

187

What type of recreation activities do you participate in?

Special Olympics (non-inclusive)

Special Olympics Unified Sports (inclusive)

Best Buddies (Unified Sports)

Family activities - with family members without disability
(inclusive)

Family activities - with group home members (non-inclusive
Combination (50 - 50)

Other:

DUE] UDCJD

 

Comments:

“I’m going to Show you some photographs of people participating in fun
activities. Looking at the people in the pictures, point to who you want to
participate in activities with the most?”

 

 

 

 

 

 

 

 

Question: Picture # Picture # Comments
in left in right
hand hand

Bowling # 1 # 2

Basketball # 4 # 3

Watching # 6 # 5

television

Going for a # 8 # 7

walk

Listening to # 10 # 9

music

Craft # 11 # 12

 

 

 

 

188

 

Debriefing:

To assure complete disclosure of the interview intent the following will be
reviewed with the consumer. “Do you know what inclusion is?” and “How do
you define inclusion?” If the consumer response differs from the operational
definition used in this investigation the investigator will provide the consumer
with the following content.

“For purposes of this study, I am defining inclusion as participation in
recreation activity directly with people with and without disability. In example,
for bowling to be inclusive, people with and without disability would have to
bowl together, on the same lane, on the same team. Just being in the same
bowling alley with people with and without disability is not considered inclusive.
Do you understand? Do you have any questions? This Study was to see whether
you prefer inclusive or non-inclusive recreation services.”

The interviewer will assure consumer is under the care of the caregiver
and answer any questions either might have. Thank both consumer and caregiver
for their participation.

189

Appendix E:
Consumer Interview Instrument #6

Demographic data (obtained from chart review immediately prior to the
interview)

1. Consumer primary diagnosis (J the appropriate box):
CI Mild Mental Retardation
CI Moderate Mental Retardation

 

 

2. Consumer age:
3. Participants type of residence (J the appropriate box):
CI State operated institution
C] Group home/adult foster care home
CI Semi-independent apartment
CI Private home (with biological or adopted parents)
CI Other (identify):
4. Gender (J the appropriate box):
C] Male
CI Female
Introduction:

“Hi. My name is Mary Lou Schilling. I am wondering if you would be
willing to answer some questions about recreation activity. Your guardian (name)
have agreed to your participation. There are no right or wrong answers. It will
take approximately 15 minutes to complete. You can quit at any time. What you
tell me is confidential. Your answers will not change the services you receive
from the referring agency. If you’d like to participate, please sign the release
form, next to the name of your guardian”.

Rapport building:

“Tell me about yourself, do you work at (participating agency name)?
What type of jobs do you do? Do you enjoy your work? What do you like best
about work?”

190

What type of recreation activities do you participate in?

Special Olympics (non-inclusive)

Special Olympics Unified Sports (inclusive)

Best Buddies (Unified Sports)

Family activities - with family members without disability
(inclusive)

Family activities - with group home members (non-inclusive
Combination (50 - 50)

Other:

DUE] DUDE

 

Comments:

“I’m going to show you some photographs of people participating in fun
activities. Looking at the people in the pictures, point to who you want to
participate in activities with the most?”

 

 

 

 

 

 

 

 

Question: Picture # Picture # Comments
in left in right
hand hand

Bowling # 2 # 1

Basketball # 3 # 4

Watching # 6 # 5

television

Going for a # 7 # 8

walk

Listening to # 10 # 9

music

Craft # ll # 12

 

 

 

 

191

 

Debriefing:

To assure complete disclosure of the interview intent the following will be
reviewed with the consumer. “DO you know what inclusion is?” and “How do
you define inclusion?” If the consumer response differs from the operational
definition used in this investigation the investigator will provide the consumer
with the following content.

“For purposes of this study, I am defining inclusion as participation in
recreation activity directly with people with and without disability. In example,
for bowling to be inclusive, people with and without disability would have to
bowl together, on the same lane, on the same team. Just being in the same
bowling alley with people with and without disability is not considered inclusive.
Do you understand? Do you have any questions? This study was to see whether
you prefer inclusive or non-inclusive recreation services.”

The interviewer will assure consumer is under the care of the caregiver
and answer any questions either might have. Thank both consumer and caregiver
for their participation.

192

 

APPENDIX F

Consumer Pilot

193

Appendix F
Consumer Pilot

Demographic data: (obtained from the referring agency, per the permission of
the guardian):

1. Consumer primary diagnosis (J the appropriate box):
CI Mild Mental Retardation
1:] Moderate Mental Retardation

 

 

 

2. Consumer age:
3. Participants type of residence (J the appropriate box):
E] State operated institution
CI Group home/adult foster care home
CI Semi-independent apartment
CI Private home (with biological or adopted parents)
Cl Other (identify):
4. Gender (J the appropriate box):
CI Male
CI Female
Introductions:

“Hello. My name is Mary Lou Schilling. You must be (consumer name).
You must be (consumer’s first name) caregiver/parent/guardian. Thank you so
much for agreeing to take part in my project. I’d like to meet with (caregiver’s
first name) for just a minute before we begin the interview. O.K. (consumer’s
name). We’ll be just a minute, could you have a seat here and we’ll come get you
when we’re ready. Would you like to look at a magazine while you’re waiting?”
Hand consumer magazine. Assure consumer comfort.

Meet with caregiver in quiet area:

“Hi, thanks again. The purpose of this project is to look at inclusion. I
want to find out whether your client (or child) prefers to engage in recreational
activity with people with disabilities or with people without disabilities.

The information you give me today is actually part of the pilot Study.
Have you ever been involved in a pilot?” Explain the purpose of a pilot. “The
purpose of this pilot is to make sure that the questions I ask in this survey are clear
and easy to understand. I’d like you to answer the questions in the survey and
then respond to the questions on the last page. The last page includes questions
related to the clarity of the survey itself. (Consumer name) is also a part of the
pilot study. I will be having him/her complete an interview today and then repeat

194

it again in one week. I ask that you do not discuss this survey and interview with
him/her until after he/She take it a second time. Do you understand? Can you do
that for me? Do you have any questions?”

“I want to make sure you understand inclusion, as I’m interpreting it for
this study. How would you define inclusion?” (Await response and clarify as
stated below if incorrect or different).

“For purposes of this study, I want you to define inclusion as participation
in recreation activity directly with people with and without disability. For
inclusion to occur there must be social interaction. In example, for bowling to be
inclusive, people with and without disability would have to bowl together, on the
same lane, on the same team. Just being in the same bowling alley with people
without disability, is not considered inclusive. Do you understand? Do you have
any questions? OK. I have one question I’d like you to answer for me before we
bring in (consumer’s first name). What has been (consumer’s first name) past
involvement in recreation activities outside of his/her home? Has it primarily
been inclusive, special recreation (non-inclusive), or a combination?

E] Special recreation or non-inclusive

CI Inclusive recreation

CI Combination (50-50)

Comments:

Meeting with caregiver and consumer:

“Hi (insert consumer’s first name). Thanks so much for waiting. You can
come in now. I’m here today to ask your help with a project. I’m going to be
asking a lot of people about the activities they do for fun. You know the activities
that you do when you’re not a work. I need someone to help me make sure that
I’m asking the questions the right way. I have some photographs that I need you
to also look at and tell me what you think about them.”

“Before we start, I want you to know that answering my questions won’t
hurt you in any way and your answers won’t change the services you receive. I
also want you to know that your name won’t be used with any of the information
you share with me. If you want to quit or need a break, just let me know. We can
stop and take a break whenever you need it.”

“All right, here’s what we’re going to do. I’m going to ask you some
questions about these pictures (Show photos). I’m going to write your answers
down on this piece of paper (Show this interview instrument). Sometimes I’m
going to use a tape recorder (Show tape recorder). I’m tape recording so that I can
be sure I write down exactly what you say.”

195

“Do you understand? Do both of you understand?”
“Do either of you have any questions?”

“I’m going to give (caregiver name) some questions. He/she is going to
answer some questions for me too.” The caregiver is directed to an adjacent table
to complete his/her survey. The caregiver is told to help themselves to the
refreshment table once they have completed their survey. The caregiver is
additionally instructed not to assist the consumer in their responses to the
interview questions. However, the caregiver may Offer clarity to questions if and
when appropriate.

Consumer interview:
“Ready, let’s get Started.”

Rapport building:

“Tell me about yourself, do you work at (participating agency name)?
What type of jobs do you do? Do you enjoy your work? What do you like best
about work?”

2. Procedures evaluation: The following interview instrument will be
presented.

A. “I’m going to Show you some pictures of people participating in
fun activities. Looking at the people in the pictures, point to who
you want to participate in activities with the most.”

Interviewer instructions:

Present photographs of people involved in activity to the pilot participant.
Activity photographs will be presented in common pairs; placed upright, side-by-
side, facing the interviewee. One photograph will show people with and without
disability participating in an activity while the other photograph will Show people
only with disability participating in the same activity.

196

 

 

 

 

 

 

 

 

 

 

Question: Picture # Picture # Probing questions to assure clarity
in left in right (examples): Why did you select this
hand hand photo? Why didn’t you choose this

photo? What about the people in the
photo made you pick this one? Why
did you pick these people over these
people?

(tape record)

Look at the # 2 # 1 Possible responses:

people _ the people

bowling. _ more like me

Would you _ not like me

like to play _ their clothing

with these _ their hair

people (photo _ other:

in left hand)

or these

people (photo

in right

hand)?

Look at the # 3 # 4 Possible responses:

people _ the people

playing _ more like me

basketball. _ not like me

Would you _ their clothing

like to play _ their hair

with these _ other:

people (photo

in left hand)

or these

people (photo

in the right

hand)?

 

 

 

 

197

 

 

 

 

 

 

 

 

 

 

 

 

Look at the # 6 # 5 Possible responses:
people _ the people
watching T.V. _ more like me
Would you _ not like me
like to watch _ their clothing
T.V. with _ their hair

these people __ other:

(photo in left

hand) or these

people (photo

in right

hand)?

Look at the # 8 # 7 Possible responses:
people going __ the people

for a walk. _ more like me
Would you _ not like me
like to go for _ their clothing

a walk with __ their hair

these people _ other:

(photo in left

hand) or these

people (photo

in right hand).

Look at the # 10 # 9 Possible responses:
people _ the people
listening to _ more like me
music. _ not like me
Would you _ their clothing
like to listen _ their hair

to music with _ other:

these people
(photo in left
hand) or these
people (photo
in right
hand)?

 

 

 

 

 

 

 

 

 

Look at the # 12 # 11 Possible responses:

people _ the people
working on _ more like me
this craft _ not like me
project. __ their clothing
Would you _ their hair

rather work _ other:

on a craft

 

project with
these people
(photo in left
hand) or these
people (photo
in right
hand)?

 

 

 

 

 

 

 

 

Interviewer instructions: On the matrix above, circle the number indicating the
photo selected by the participant (columns 2 & 3). Following responses to each
close-ended question; the interviewer will prompt the interviewee to provide
further insights into his/her choice. The following open-ended questions may be
presented:

“Why did you select that picture?”
“Why didn’t you choose the other picture?”
“What about the people in the photo made you pick the one you did?”

“Why did you pick these people over these people?”

A checklist of possible responses to open-ended questioning is provided
for ease in recording. This segment of the interview will be audiotape recorded.
The intent of this inquiry is to gather additional data to support responses.

Repeat the above process until the interviewee has been shown all activity
photograph sets.

The interviewer will assure the consumer is under the care of the caregiver
and answer any questions either might have. Share with the caregiver and
consumer that they are requested not to discuss their responses with each other
until after the next meeting. Thank both consumer and caregiver for their
participation and remind them of the next scheduled interview.

199

Debriefing:

Upon completion of the second interview, the investigator will assure
provide information to the consumer to assure complete disclosure of the
interview intent. The following content will be reviewed with the consumer.

“Do you know what inclusion is?” and “How do you define inclusion?”
If the consumer response differs from the operational definition used in this
investigation the investigator will provide the consumer with the following
content.

“For purposes of this study, I am defining inclusion as participation in
recreation activity directly with people with and without disability. In example,
for bowling to be inclusive, people with and without disability would have to
bowl together, on the same lane, on the same team. Just being in the same
bowling alley with people with and without disability is not considered inclusive.
Do you understand? Do you have any questions? This study was to see whether
you prefer inclusive or non-inclusive recreation services.”

The interviewer will assure the consumer is under the care of the caregiver

and answer any questions either might have. Both will be thanked for their
participation in the pilot Study.

200

APPENDIX G

Consent to Participate

 

 

201

Appendix G
Recreation Services
The Preferences of Consumers and Caregivers
A Comparison Study
Consent to Participate

You agree to participate in a research project that will explore what
you like about recreation activities. In particular, this study will explore
who (what people) you prefer to participate with while doing things that are
fun or when not at work. The results of this study will help recreation
professionals provide you with better recreation services.

You will be interviewed and the interview will take approximately
15 to 20 minutes of your time. Participation in the interview is voluntary
and you can Stop at any time. Participation will cause no known harm or
risk to you. There are no right or wrong answers. To assure that the
investigator records information accurately, some of your responses will be
audiotape recorded. The audiotape will be replayed following the interview
and immediately deleted or destroyed. Your answers will not change the
services you receive. Your privacy will be protected to the maximum
extent allowed by law. To maintain confidentiality, your name will not be
used on any interview information gathered.

If you have any questions about this project, please do not hesitate to
contact the investigator at:

Mary Lou Schilling Dr. Richard Paulsen

1058 W. Deerfield Rd. 131 Natural Resources Building,
M.S.U.

Mt. Pleasant, MI, 48858 East Lansing, MI, 48824-1222

Phone: (989) 773-2151 Phone: (517) 353-5190 ext. 114

If you have any questions regarding your rights as a participant, or
are dissatisfied with this project, you may contact:
Ashir Kumar, M.D.
Chair of the University Committee on
Research Involving Human Subjects (UCRIHS)
202 Olds Hall, M.S.U.
East Lansing, MI, 48824
Phone: (517) 355-2180
Fax: (517) 432-4503
e-mail: <ucrihs@msu.edu>

202

Your signature below indicates that you voluntarily agree to
participate in this survey or interview.

Participant Signature: Date:

 

Responsible Party: Date:

 

(Necessary if participant is 17 years or not his/her own guardian)
Person presenting or reading
this document to the participant: Date:

cc: participant

203

 

APPENDIX H

Caregiver Questionnaire

204

Appendix H
Inclusive Recreation Services 0 {CI
The Preferences of Consumers and Caregivers r.
A Comparison Study I

Dear Caregiver:

I’m asking for your assistance in completing the following questionnaire, which
is part of a larger study comparing the preferences of caregivers and consumers to
inclusive recreation services. The results will assist recreation professionals in

providing recreation opportunities to individuals with developmental disability. Your
participation is voluntary and you can stop at any time. It will take approximately 10
minutes to complete this survey. There are no right or wrong answers. All responses
are confidential and anonymous. Your privacy will be protected to the maximum extent
allowed by law. By completing this survey you give permission to the investigator to
combine your answers with the other responses received and publish the results. You
indicate your voluntary agreement to participate by completing and returning this
questionnaire. If you have any questions about this project please feel free to contact
Mary Lou Schilling at ( 989) 774-7306 or Dr. Richard Paulsen at (5 I 7) 353-5 I 90 ext.
I I 4. If you have any questions regarding your rights as a participant, or you are
dissatisfied with this project, you may contact Dr. Ashir Kumar at (517) 355-2180.
Thank you for your time. Your participation is greatly appreciated!

Mary Lou Schilling
MS U Graduate Student
Inclusive Recreation - A Caregiver’s Perspective

1. Listed below are common activities that people with developmental disabilities
may participate in for fun or enjoyment. Please review the list and identify (J)
whether you believe people with disability should engage in these activities
inclusively (with people with and without disability) or non-inclusively (only
with people with disability). Please feel free to make comments to explain your
responses. Only (J) one box (inclusive, non-inclusive) for each activity.

 

Common Activity Inclusive Non-inclusive Comments

(J) (J)

 

1. Watching TV

 

2. Listening to music

 

3. Bowling

 

 

 

 

 

 

205

 

4. Crafts/hobbies

 

5. Basketball

 

 

6. Going for a walk

 

 

 

 

The people under your care participate most in (J most appropriate response):

CI Inclusive recreation opportunities
CI Recreation opportunities designed specifically for people with disability
CI A combination of inclusive and non-inclusive recreation services

In what living environment do you provide care to people with disabilities?
(J most appropriate response)
State operated institution
CI Group home/adult foster care home
CI Semi-independent apartment
CI Private home
CI Other (please identify):

 

The people under your care function at which level of cognitive impairment?

(J all that apply)
CI Moderate mental impairment
CI Mild mental impairment

Recalling that inclusion occurs only when people with disability participate
directly with (versus beside) people without disability. How much experience
have you had in programming inclusive recreation activity for people with
disability? (J most appropriate response)

CI no experience in inclusive recreation
CI some experience with inclusive recreation
CI much experience with inclusive recreation

How long have you been a caregiver for people with developmental disability?
years

What is your age:

206

 

8. What type of training did you receive to perform your job? (J most appropriate
response)

no training provided

on-the-job training

formal training (classroom instruction)

other (please

describe):

DDUD

 

9. If you have received formal training, which of the following topics were covered
in detail? (J all that apply)

normalization

least restrictive training environment

age appropriate activity

mainstreaming

integration

inclusion

none of the above

UDDUDDD

Thank you so much for taking the time from your busy schedule to complete
this survey. When completed please return this form to the investigator.

207

APPENDIX I

Caregiver Pilot

208

Appendix I
Caregiver Pilot

Instructions: Please complete the survey regarding inclusion on the next 2 pages.
Once completed, please respond to the questions on the final page. The final page
of questions will help make sure the questions are easy to read, understand, and
answer. Thanking you, in advance, for your participation in this project!

Inclusive Recreation - A Caregiver’s Perspective

1. Listed below are common activities that people with developmental
disabilities may participate in for fun or enjoyment. Please review the list
and identify (J) whether you believe people with disability Should engage
in these activities inclusively (with people with and without disability) or
non-inclusively (only with people with disability). Please feel free to
make comments to explain your responses. Only (A one box (inclusive,
non-inclusive) for each activity.

 

Common Activity Inclusive (J) Non-inclusive Comments

(J)

 

1. Watching TV

 

2. Listening to music

 

3. Bowling

 

4. Crafts/hobbies

 

5. Basketball

 

6. Going for a walk

 

 

 

 

 

 

2. The people under your care participate most in (J most appropriate
response):
Inclusive recreation opportunities
CI Recreation opportunities designed specifically for people with
disability
CI A combination of inclusive and non-inclusive recreation services

209

3. Recalling that inclusion occurs only when people with disability
participate directly with (versus beside) people without disability. How
much experience have you had in programming inclusive recreation
activity for people with disability? (J most appropriate response).

C] no experience in inclusive recreation
CI some experience with inclusive recreation
CI much experience with inclusive recreation

4. How long have you been a caregiver for people with developmental
disability? years

5. What is your age:

6. What type of training did you receive to perform your job? (J most
appropriate response)
CI no training provided
CI on the job training
CI formal training (classroom instruction)
CI other (please describe):

7. If you have received formal training, which of the following topics were
covered in detail? (J all that apply)

normalization

least restrictive training environment

age appropriate activity

mainstreaming

integration

inclusion

none of the above

DDDDDDD

By answering the questions on the following page you will help me evaluate
whether the survey questions need to be changed in any way.

210

Caregiver Pilot: Survey Evaluation

1.

to

Was it easy to read the questions on the previous 2 pages? YES NO
Please Explain:

Were there any questions that were difficult to understand? YES NO
Please Explain:

Are there any questions you would change to make it easier
to read or understand? YES NO

Please identify the questions you would change. Please indicate how you
would reword or change for improved clarity.

Thank you so much for taking time from your busy schedule to complete

this survey. Please return this survey to the investigator.

211

APPENDIX .1

Agency Contact Letter

212

Appendix J: Agency Contact Letter

Name (Administrator, CEO)
Organization name
Street address
City, state, zip code
Date

Dear (administrator or CEO):

As per our recent phone conversion, I’m writing this note requesting your
assistance in a research project which will evaluate the recreation preferences of
individuals with disabilities. I’m seeking individuals with diagnosis of moderate
and mild levels of mental retardation, and their caregivers, to be subjects of this
study. I am asking your support in: 1) contacting people with disability and their
caregivers; 2) providing demographic information regarding the participants level
of cognitive impairment, gender, age, and type of residence; and 3) potentially
providing Space where participants can be interviewed.

I would be more than happy to meet with you to provide additional
information about my research methodologies and techniques. I anticipate this
project to begin in June, 2002 and end in August, 2002. This project is part of my
Ph.D. program at Michigan State University.

I’d additionally like you to know that the privacy of your agency and the
participants will be protected to the maximum extent allowable by law. All data
obtained will remain confidential and neither the agency or participant names will
be revealed in any documentation. There are no known risks of participation. All
participants will be assured that there are no right or wrong answers. I will
personally complete all interviews with participants and allow their caregivers to
be present in the interview area. Finally, all participants will be assured that their
responses will not impact the services they receive from your organization.

Thank you for considering this project. I’m excited to begin data
collection and believe your agency is a perfect site for its implementation.
Additionally, if you are interested, an executive summary of the results of this
project will be made available to you upon project completion.

Sincerely,

Mary Lou Schilling, MA, CTRS
Ph.D. student MSU

213

 

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214

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