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DEFINING AND MEASURING COMMUNITY INCLUSION IN THE LIVES OF

PEOPLE WITH MENTAL RETARDATION

By:

Margaret Mary Sebastian

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Counseling, Educational Psychology, and Special Education

1999

ABSTRACT

DEFINING AND MEASURING COMMUNITY INCLUSION IN THE LIVES OF
PEOPLE WITH MENTAL RETARDATION
By

Margaret Mary Sebastian

The term community inclusion is widely used when discussing the lives and
services designed for people with mental retardation. Despite the frequent use of the
term and frequent programmatic attempts at achieving it, there have been few attempts to
define and measure this complex construct. The lack of investigation of this construct
has made it difficult to determine what factors contribute to one’s experience of
community inclusion. The purpose of this exploratory study was to operationalize and
measure community inclusion by identifying four components that were hypothesized to
contribute to the experience. The participants in the study were 126 consumers of
services at Clinton-Eaton-Ingham Community Mental Health-Community Services for
the Developmentally Disabled located in Michigan.

Community inclusion was operationalized using four components suggested in
the literature: integration, social support, social role, and choice. Measures for each of
these components were determined. To examine the utility of this multi-dimensional
measurement approach the reliability of the measures were examined. Cronbach alphas
were used to examine the internal consistency of the measures. A correlation analysis of
the relationship among the four components was also performed to better understand the

components as a comprehensive concept of community inclusion. The relationship

between community inclusion and quality of life was also examined. Quality of life was
measured using a subjective measure of life satisfaction and the objective measures of
adaptive behavior and social indictors. To further explore the value of the measures the
scores on each measure and the total of all measures were compared by agency program.
The participants in this study were receiving services from at least one of two programs,
Vocational Services or Transitions.

.This research examined the cogency of this operational definition by making the
following hypotheses: (l) The measures for each of the components of community
inclusion (community integration, social support, social role and choice) will be
internally consistent; (2) There will be a statistically significant positive relationship
between proposed components of community inclusion: community integration, social
role, social support, and choice; (3) There will be a statistically significant positive
relationship between community inclusion and quality of life; and (4) Participants from
Vocational Services will have statistically significant higher scores on measures of
community inclusion than participants from Transitions.

Results from this study indicate some strengths and weaknesses in the
operationalization and measurement of community inclusion. In response to hypothesis
one, the alpha level for the measures of community integration (Community Activity and
Participation Checklist), social support (Social Support Self-Report) and choice (Choice
Questionnaire) all indicated adequate internal consistency. The corresponding alpha for
the measure of social role (Social Role Checklist) however, would be considered

insufficient.

There were statistically significant relationships found between the four measures
of community inclusion. Every relationship between two components was found to be
statistically significant except for the relationship between choice and social support.
The relative strength of the correlation coefficients attained between the four measures
also indicates that the four separate measures are not measuring the same construct.

There was a statistically significant relationship between the total score of
community inclusion and subjective quality of life (life satisfaction) as measured on the
Consumer Satisfaction Survey. There were also statistically significant relationships
found between subjective quality of life community integration and social support.

A Pearson correlation analysis indicated that there was a significant relationship
between adaptive behavior as measured on the ICAP and community inclusion, the total
of the four components. The ICAP was also positively correlated with the measures of
choice and social role.

Statistically significant differences in levels of community inclusion between
participants from Vocational Services and Transitions were determined. The
demographic variables from the two groups were first tested to assure that they are
actually two different groups. Participants from Vocational Services had higher ICAP
scores, less paid support, more social roles, and more opportunity for choice. Participants
from Transitions indicated lower ICAP scores, greater paid support, fewer social roles,
and lower Opportunity for choice-making. Participants from Vocational Services scored
higher on all of the community inclusion measures.

In summary, this research proposed that community inclusion could be

operationalized by the sum of four components: (a) community integration, (b) social

role, (0) social support, and (d) choice. The findings from this study provided some
knowledge from which to build. These measures appear to be promising tools for
helping community agency staff assess individual inclusion needs so steps may be taken
to increase individual community inclusion. While the field of rehabilitation as well as
the field of mental retardation supports a philOSOphy of community inclusion, it is
important that it continue to be operationalized and subsequently measured. A need for

future research was revealed and directions are emphasized.

ACKNOWLEDGEMENTS

This research has been the culmination of a doctoral experience that I would not
have completed without the support and encouragement of many people that I would like
to take this opportunity to thank. First, I would like to thank my dissertation committee.
Dr. Michael Leahy, chair of my dissertation committee, who during this research project
provided me with the time, direction, clarity, and encouragement I needed to complete
this process. Equally, I owe gratitude to my advisor Dr. Rochelle V. Habeck, who has
provided me with constant encouragement and support. I will always treasure the notes,
winks, and words of wisdom. Dr. Richard Coelho has been a friend and mentor in both
this research project and in my career development. Dr. Nancy Crewe has also been very
supportive through my doctoral studies and this project. Dr. Deborah Salem was not only
supportive in this research project but also became an excellent role model in the process.

There were several people from Clinton-Eaton-Ingham Community Mental '
Health Community Services for the Developmentally Disabled that made this research
possible. Daniel DeVaney and Annette F ortino provided the catalyst for this research.
They gave me the opportunity to see possibilities and were instrumental in my
examination of my own philosophy and behaviors. There were numerous others from
CSDD who assisted me in this study, but I would specifically like to thank Dr. Ken
Slater, Tom Knudston, and John Root. I would also like to thank the many consumers
who allowed me to learn from them through my internship and this project.

During my doctoral study I made three dear friends that supported me throughout
the completion of my studies and this work. Dr. Susan Scully who was both a friend and

a mentor; Dr. Martha Chapin who was always ready with the encouraging word; and

vi

Frances Saroki who made repeated sacrifices to help me complete this work. You know
that you are in my heart and mentioned in my daily prayers.

There are several other people who I would like to thank for providing support
that helped me complete this process: Katie Randall, Jessica Goodkind, Jenna Luj an,
Virginia Thielsen, Victoria Saroki, Vivian Saroki, Dr. Pennie Foster-Fishman, and Dr.
Rhonda Egidio.

I would like to thank my parents, James and Joan Sebastian, for all of the
encouragement and support. My dad who asked almost every day for two years how
much I had written but made me laugh when doing so. And my mom who reminded me
that there were other things in life and who made sure that every break I took was
enjoyable. I would also like to thank my mother-in-law, Frances Rotwein, for her
encouragement and support during this process.

To Michael Rotwein, who was beside throughout my doctoral program, providing
me with encouragement and strength. I couldn’t have done it without you and wouldn’t

have wanted to try. Mike, I love you.

vii

TABLE OF CONTENTS

LIST OF TABLES .......................................................................

CHAPTER 1

INTRODUCTION .............................................................................................
Statement and Significance ofthe Problem..............
Purpose of The Study ................................................................................
Definition of Terms. . .. ................................................................................
Assumptions and Limitations .................................................................... .

CHAPTER 2

Mental Retardation .....................................................................................

History of Services for People With Mental Retardation..... .. ..
Legislation ..............................................................................................
Philosophical and Service Changes ...................................................... .

Community Inclusion ..................................................................................
Community Integration ..........................................................................
The Importance of Social Role .............................................................
Choice ..................................................................................................
Support .................................................................................................

Quality of Life .........................................................................................
Assessing Quality of Life ....................................................................

Summary ....... . .............................................................................................

CHAPTER 3

METHODOLOGY ..............................................................................................
Research Site ...............................................................................................
Vocational Services ................................................................................
Transitions North and South ..................................................................
Recruitment of Participants .........................................................................
Program Lists ....................................................................
Consent Procedures ...............................................................................
Instrumentation .......................................................................
Community Inclusion ...........................................................
Community Integration ....................................................................
Social Role ...................................................................................... .
Support .............................................................................................
Choice .............................................................................................

Quality of Life ........................................................................................
Subjective Quality of Life ................................................................
Adaptive Behavior ............................................................................

Social Indicators ..............................................................................
Procedure ................................................................................................... .
Design .........................................................................

viii

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Data Collection ........................................................................ 52

Consent Procedures .................................... . ........................ 52
Interview Procedures ........................ . .............................. 52
Demographic Data Collection ............................................. 53
Piloting the Intervrew 54
Data Collection ............................................................. 56

Interviews ................................................................. 56

Case File Data ............................................................. 56

Staff Data ................................................................. 56

Data Analysis ....................................................... . ........................................ 58
CHAPTER 4

RESULTS ................................................................................. 62

Sample Characteristics ............................................................... 62

Community Inclusion Measures ................................................... 65

Correlations of Measures ....................................................... 66

Scores of Measures by Agency Program ............. . ....................... 71

Community Integration .......................................................... 72

Social Role ........................................................................ 72

Social Support 78

Choice .............................................................................. 78

Quality of Life ........................................................................ 78

Subjective Quality of Life ...................................................... 78

Objective Quality of Life ............................ - ........................... 81
Adaptive Behavior .......................................................... 81
Social Indicators ............................................................ 82

Relationship between Community Inclusion
and Subjective Quality of Life ........................................ 82
Relationship between Community Inclusion 83
and Objective Quality of Life .........................................
CHAPTER 5
DISCUSSION ............................................................................ 89
Findings ............................................................................... 89

Research Question One ........................................................ 90

Research Question Two ........................................................ 91

Research Question Three ....................................................... 92

Research Question Four ....................................................... 96

Summary of Findings ................................................................ 103
Limitations ............................................................................ 103
Implication of Findings .............................................................. 110

Future Research .................................................................. 111

Training Personnel ............................................................... 112

Practice ........................................................................... 112

Conclusions ............................................................................ 1 13

APPENDIX

References .............................................................................................

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133

135

LIST OF TABLES

Table
1. Comparison of the Rehabilitation, Independent Living, and

Support Paradigms ..............................................................
2. Hypotheses and Measures to Evaluate the Research Questions ...............
3. Participant Demographic Information Categorized by

Agency Programs ...............................................................
4. Sample Mean of Community Inclusion and Life Satisfaction .................
5. Cronbach Alphas for Measures of Community Inclusion. .. . . . . . . . .. . ..
6. Correlation Among Community Inclusion Measures ..........................
7. Comparison of Participant Mean Scores on Measures of

Community Inclusion by Agency Program .................................
8. Comparison of Frequency of “Yes” Responses by Agency Program for

Items on theCommunity Activity and Participation Checklist ...............

9. Comparison of Frequency of “Yes” Responses for Items on the

Social Role Checklist by Agency Program ..................................
10. Comparison of Mean Scores for Items on the

Social Supports Self-Report by Agency Program .........................
11. Comparison of Frequency of “Yes” Responses for Items on the

Choice Questionnaire by Agency Program .................................
12. Comparison of Level of Satisfaction for Items on the

Consumer Satisfaction Survey by Agency Program ......................
13. Frequency of Responses for Preferences Items on the Consumer

Satisfaction Survey ............................................................
14. Comparison of Participants on Mean ICAP Score by Agency

Program ..........................................................................
15. Relationship of the Life Satisfaction and Adaptive Behavior with

Community Inclusion .........................................................
16. Summary of Step-wise Regression Analysis for Variables Predicting

Subjective Quality of Life ....................................................
17 Summary of Step-wise Regression Analysis for Social Indicator Variables

Predicting Community Inclusion ............................................

xi

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88

Chapter 1
INTRODUCTION

People with mental retardation collectively make up one of the largest
rehabilitation populations and most prevalent disability populations in the United States
(Rubin & Roessler, 1995). The 1990 census estimated that between 6.2 and 7.5 million
people in the United States have mental retardation, cutting across lines of race, ethnicity,
and socioeconomic levels (Bureau of the Census, 1995).

The mental retardation movement has been described as one of the great social
movements of the 20th century (Braddock, 1994). Throughout this century, the field has
been in transition to improve the lives of people with mental retardation. Legislation,
such as the Developmental Disabilities Act (1976), PL 94-142 (1975), IDEA (1990),
ADA (1990), and the Rehabilitation Acts (1973) have both initiated and supported
progress (Jenkins, Patterson, & Szymanski, 1992; Rubin & Roessler, 1995; Wolfe,
Kregal, & Wehman, 1996; Wright, 1980). Philosophical changes such as normalization,
least restrictive environment, integration, and inclusion indicate the change in the
perception of capabilities and value placed on the lives of these people (Bruinicks, Kudla,
Hauber, Hill, & Wieck, 1981; Condeluci & Williams, 1997; Maki & Riggar, 1997). Both
legislative and philosophical shifis have promoted services changes, specifically
deinstitutionlization (Olney & Salamone, 1992; Racino, 1994). One of the key changes
beginning in the 19705 for this population has been the shift from providing services
within an institutionalized setting to a community setting typically referred to as a

community mental health agency or community services (Levine & Perkins, 1987).

At the initial onset, the purpose of deinstitutionalization was attributed more to
funding practices than philosophical ideals (Levine & Perkins, 1987). Unfortunately,
because of this emphasis, many people found themselves in a situation where they lefi a
mental retardation facility to live in a community based setting that continued to follow
the same guidelines and practices of the institutional setting. This initially led to
increased costs for care, supervision and housing (Jacobson & Burchard, 1992).

Traditionally, community agencies would evaluate quality through an
examination of service delivery practices directed toward care and safety. Practices and
characteristics that foster client independence, physical access to the community,
participation in the community, and individual adjustment were not assessed (Jacobson &
Burchard, 1992). In the 19905 many community agencies have begun to look at a wider
variety of outcomes and to consider consumer satisfaction as one of them.

These legislative, philosophical, and service changes have led to a current _
overriding focus of increasing community inclusion (Storey, 1993), and improving the
quality of life for people with disabilities in all aspects of their lives, including work,
education, living arrangements, socialization, and leisure (Halpern, 1994; Landesman,
1986; Walker, 1988). The concepts of community inclusion and quality of life have
assumed greater importance in current mental retardation literature. The two concepts
also have commonalties that are not related to their meaning. While both terms have
been identified as current “buzz” words within the field, both community inclusion and
quality of life are considered difficult to define and measure. There is also a presumed
causal link both in theory and practice, between these two concepts although there is no

research evidence to support such a link (Condelucci & Williams, 1997).

 

 

The term community inclusion is often used interchangeably with'community
integration (Bricker, 1995; Magis-Agosta, 1994). Researchers have recognized that
community inclusion is a complex concept to define and to achieve it in a way that
benefits both people with and without disabilities (Bricker, 1995; Taylor, 1992). Magis-
Agosta (1994) noted that community inclusion is achieved not simply through physical
presence in the community, but with the opportunity for self-determination, and for
cultural and social inclusion. Thus, community inclusion is intended not only to integrate
an individual physically in a community environment, but also promote the individual’s
experience of belonging to it through the establishment of relationships and a social role
within the environment. Community inclusion, requires a more precise definition than
that found in current service systems, so that this practice is based on the social needs and
experience of the individual.

Examining the various use of the terms community integration and community
inclusion and attempting to differentiate the two may appear to be a simple case of
semantics. But, as Storey (1993) noted, a consensus in defining and measuring the
construct is necessary to guide research and service delivery at both the individual
outcome level and the more global level, which influences social policy. Attempts have
been made to measure community inclusion, but this research has tended to use a one
dimension, outcome based approach, typically focusing on activity in terms of location,
frequency, and duration (Magis—Agosta, 1994; Taylor, 1992). Such approaches fail to
examine the individual’ 5 preference or choice regarding an activity or experience, how
the individual defines the meaning of the activity or experience, the quality of

participation, and the perceived value of the experience (Jacobson & Burchard, 1992).

Thus, despite the attention paid to strategies to increase community inclusion, little
attention has been paid to defining and measuring it (Storey, 1993).

Due to the lack of investigation of this construct it is difficult to determine exactly
what the factors are that contribute to one’s experience of community inclusion. Storey '
proposes to define this construct as having four components: physical integration, social
integration, relationships, and social networks. Physical integration refers to the physical
presence in the community. This is a component that seems to be readily accepted
throughout the literature. Social integration is defined as “regular access to interactions
with individuals without identified [disabilities] and regular use of normal community
resources (Will, 1984, p. 2, as cited in Storey, 1993). Relationships refers to social
support and can be measured in terms of quantity (number of relationships, frequency of
contact, length of relationship, etc), structure (reciprocity within the relationship), and
function (role within the relationship such as friend, parent, sibling, co-worker, etc).
Social networks are difficult to define as stated by Storey (1993) and appear to be
strikingly similar to friendships. Storey defines social networks as repeated contact with
a number of people who would also identify an existing relationship. While Storey’s
(1993) theoretical argument for the use of the four components discussed may be
reasonable, there has been no empirical evidence that can validate this proposition.

Other scholars have identified other human needs that may be additionally
important components of community inclusion. Maslow (1954) in his discussion of
hierarchy of needs and Wolfensberger (1983) in his discussion of normalization and

social role valorization both touch on examples of psychological needs such as the need

 

' Storey (1993) refers to the construct as community integration rather than community inclusion. In order
to maintain continuity, this research will use the term inclusion to present his ideas.

4

to affiliate with others, the need to be accepted, and the need to belong. Maslow and
Wolfensberger’s theories suggest that having a social role is an important component of
inclusion.

Thus far three constructs have been identified as possible components of
community inclusion: community integration, social support, and social role. While these
are components of community inclusion that may contribute to the experience of
community inclusion, this is not an experience that can be done to the individual.
Therefore, choice is an important construct to consider as a component of community
inclusion (Bullock & Mahon, 1992).

Proponents of community inclusion believe that it will improve the quality of life
for people with developmental disabilities (J acobsen & Burchard, 1992; Storey, 1993).
Quality of life has been identified as one of the new (Landesman, 1986) and important
issues of the 19905 (Vandergriff & Chubon, 1994) with regard to services for people with
mental retardation. In fact, quality of life has also been identified as an important current
issue in the lives of all people with disabilities (Schalock & Kieman, 1990).

However, quality of life is also a difficult construct to define (Felce & Peny,
1995; Halpem, 1994; Jacobson & Burchard, 1992; Landesman, 1986). It has been
defined as both a subjective and objective construct (Fabian, 1990; Halpem, 1994; Taylor
& Bogdon, 1990; Taylor & Bogdan, 1996). Halpem (1994) stated that the subjective
quality of life refers to the individual’s point of view. As a subjective construct, self-
reported life satisfaction or subjective well being is typically what is measured (Day &
Alon, 1993; Fabian, 1990; Schalock, 1990; Schalock, 1994; Taylor & Bogdan, 1990;

Taylor & Bogdan, 1996). As an objective measure, adaptive functioning and/or social

indicators (such as socioeconomic status, number of activities involved in, or number of
hospitalizations) are typically used as measures (Day & Alon, 1993; Fabian, 1991; Felce
& Perry, 1995; Hamer & Heal, 1993). Halpem (1994) referred to objective quality of
life as society’s point of view with the perspective coming from either the individual or
another person. Recent research and literature has become concerned with the quality of
life of persons with mental retardation, but few studies have relied on the individuals
themselves to provide such information (Jacobson & Burchard, 1992).

The causal link between increased community inclusion and enhanced quality of
life has been suggested in the literature (Hamer & Heal, 1993; Jacobson & Burchard,
1992; Sands & Kozleski, 1994; Schalock and Kieman, 1990; Storey, 1993 ). Scholars
have also provided theoretical support for community inclusion as a determinant of
improved quality of life (Condeluci & Williams, 1997; Felce & Perry, 1995; Halpem,
1994). Nevertheless, this literature search found no empirical evidence that experiencing
conununity inclusion as defined as a multi-component construct does indeed improve
quality of life whether measured subjectively or objectively.

_St_atement m Significance of the Problem

Despite efforts introduced by deinstitutionalization and community integration,
conditions of living and working are not changing rapidly enough to keep up with the
changes in attitudes, aspirations, and values of people with disabilities (Schalock &
Kieman, 1990). Attitudes, values and aspirations of people with disabilities relate to the
individual’s subjective evaluation of quality of life. Mere physical integration within the
community environment is not necessarily congruent with the needs and wants of many

people with mental retardation and therefore, this integration is not proving to be a

sufficient means to significant improvement in quality of life (Magis-Agosta, 1994;
Schalock & Kieman, 1990). 5

Numerous programs and services that have attempted to move toward increased
community inclusion and enhanced quality of life. Yet a significant proportion of people
with mental retardation continue to be marginalized, stigmatized, segregated and
disenfranchised in regards to living arrangements, daily activities, work, and leisure
(Braddock, 1994; Bullock & Mahon, 1992; Gliner & Sample, 1994, Miller & Keys,
1994). As Millington, Szymanski, and Hanley-Maxwell (1994) stated, these individuals
are often under-used in the labor market and continue to receive government assistance.
Furthermore, Gliner and Sample (1994) have identified the need to increase community
integration, community inclusion, and quality of life for people with mental retardation
receiving either sheltered or supported services.

Despite the frequent use of the term community inclusion and the frequent
programmatic attempts to achieve it, there have been few attempts to either define or
measure community inclusion as a complex multi-dimensional construct nor to evaluate
its impact on quality of life. When measuring community inclusion, researchers and
program evaluators have typically focused only on an indication of physical presence in
the community.

It is therefore necessary that research efforts consider a more holistic and
complete definition for community inclusion that includes and utilizes all of the central
multiple factors involved, including community integration, social role, social support,
and choice. It also appears that it would be valuable to measure quality of life for people

with mental retardation using their own perspective in order to rmderstand the

relationship between community inclusion and its various components and an

individual’s perceived quality of life.

Purpose of the Studv
The purpose of this study was to define community inclusion as well as expand
our understanding of the experience for people with mental retardation. Community
inclusion will be operationalized using four components suggested in the literature:
integration, social support, social role, and choice. Measures for each of these
components were developed. This research examined the cogency of this operational
definition by asking the following research questions:
1. Are the measures for each of the components of community inclusion (community
integration, social support, social role and choice) reliable?
2. Is there a relationship between proposed components of community inclusion:
community integration, social role, social support, and choice?
3. Is there a relationship between community inclusion and quality of life?
4. Is there a difference in scores on measures of community inclusion for people in
. different agency programs?
Definition of Term_s

Clinton-Eaton-Inm (CEI) Community Mental Health (CMH) Community
Services for the Developmentally Disabled (CSDD) or CEI-CMI-I-CSDD: This is a tri-

 

county community mental health agency located in the state of Michigan that specifically
serves people with developmental disabilities. Services include housing, health care, and

vocational.

Person with Mental Retardation: An individual who has substantial limitations in
present functioning, characterized by significantly subaverage intellectual functioning,
existing concrurently with related limitations in two or more of the following applicable
skill areas: communication, self-care, home living, social skills, community use, self-
direction, health and safety, functional academics, leisure, and work. Mental Retardation
occurs before the age 18.

Consumer". Any individual who is currently receiving services from CEI—CMH-
CSDD.

Community Inclusion: Community inclusion is a psychosocial and holistic
experience which includes but is not limited to: (a) community integration, (b) social
role, (c) support and (d) choice.

Com_munitv Intemtion: This is the time an individual experiences a physical
presence in an integrated community setting.

Social Role: Social role includes the roles that one holds within the community.

C_l_r_9ic_e: The opportunity to make “an unforced selection of a preferred alternative
between two or more options” (Stancliffe & Abery, 1997, p. 160).

Paid Sumrt: A person who is a paid disability service provider and who provides
assistance, feedback, companionship, or contact to assist a person with a disability
participate in a work or community setting,

Natural Smrtz A person who is not a disability service provider but who
provides assistance, feedback, companionship, or contact to assist a person with a

disability participate in a work or community setting.

Qualig of Life: Quality of life is defined as the subjective self-reported
expression of life satisfaction and the objective assessment of adaptive behavior and
social indicators (i.e., health, income, use of adaptive equipment).

Assumptions and Limitations
Generalizability

Given that this study was conducted exclusively with a sample from a Mid-
Michigan community mental health agency, there is an obvious limitation to the
generalizability of the results. One assumption is that this community mental health
agency is similar to other community mental health agencies in the services that are
provided their consumers. Despite reported differences in the community mental health
boards across the state of Michigan, the provision and types of services are standard and
regulated (R. Coelho, personal communication, June, 1998). Another assumption has
been made that the individuals in this sample are similar to consumers of other
community mental health agencies. During this research period there was a statewide
implementation of the Inventory for Client and Agency Planning (ICAP) (Bruininks, Hill,
Weatherman, & Woodcock, 1986). This implementation provides a uniform standard to
qualify people as far as need for services as well as a standard for the provision of
services.

_Vgliditv of information received

A major assumption of this study concerns the validity of the responses of persons

with mental retardation. Previous research has noted several issues in the assessment of

people with mental retardation. These issues include acquiescence (Heal & Chadsey-

10

Rusch, 1985; and Matikka & Vesala, 1997), test-retest reliability, responsiveness,
consistency, and informant reliability (Heal & Sigelman, 1996).

Acquiescence is the tendency to respond affinnatively regardless of question.
Literature has suggested that this is a threat to data from people with mental retardation
(Heal & Sigelman, 1996; Matikka & Vesala, 1997). Acquiescence is assumed to arise
from three sources: attributes of the subject, properties of the items or the test, or the
aspects of the situation. Evidence has shown that acquiescence is related to lower
education and intelligence. This threat should be considered in regard to each interview.
If the researcher had suspicion of acquiescence, it could be evaluated by asking questions
as suggested by Stancliffe (1997). The evaluation would consist of the question(s) being
asked in two ways. For example, “do you live by yourself?”, “do you live with
someone?”

Sigelman, Schoenrock, Budd, Winer, Spanhel, Martin, Hromas, and Bensberg
(1983) found that test-retest reliability was at 87% when asked “yes or no” although the
majority of the responses were “yes” possibly indicating acquiescence. This research
also found that given four option multiple choice questions yielded a 72% test-retest
agreement rate. This same study found that open-ended questions asked one week apart
rarely yielded the same responses on both occasions. The researchers mention that while
overall reliability seems high, reliability is also hard to determine without determining the
general accuracy of the responses. Responses to open-ended questions are typically
under-reported in comparison to responses to “yes/no” questions. For example, more
daily activities are reported on questions that require a “yes/no” response to a list of

activities than to an open-ended question soliciting daily activities.

11

Researchers have found that responsiveness to questions on the part of people
with mental retardation varied according to the intellectual level of the individual
(Sigelman, Winer, & Schroenrock, 1982). Responsiveness also varies given the type of
question. Questions that ask for a “yes” or “no” response typically produce higher rate of
responsiveness. Verbal multiple-choice questions and open-ended questions have
typically proven to be the most difficult for people with cognitive disabilities to answer
(Heal & Sigelman, 1996). To increase responsiveness, variation in methods of asking
and answering questions can be used. These variations typically involve the use of
pictures that can elicit non-verbal responses (Sigelman & Budd, 1986).

Ability to measure auglitv of life

Fabian (1992) in a discussion of measuring quality of life states that “even
instruments with demonstrated reliability and validity, when used to measure complex
and multifaceted constructs such as quality of life, are subject to cautions concerning
their use and interpretation.” Rather than abandoning or avoiding the study of quality of
life outcomes, she suggests that to continue to promote progress in this area, researchers
must become familiar with quality of life definition and measurement issues,
acknowledge the issues, and interpret the results with caution. Therefore both the nature
of the subject matter being assessed and the population whose responses are being
soliciwd, present challenges to the quality of data. For these reasons, the findings will be

considered tentative and exploratory in this study.

12

Chapter 11
REVIEW OF LITERATURE

To inform this research, literature was reviewed within the fields of mental
retardation, developmental disabilities, rehabilitation, rehabilitation counseling,
psychology and special education to develop a context for this study. The following
areas were identified as important in informing this research: (a) mental retardation, (b)
the history of services for people with mental retardation, (c) community inclusion, and
((1) quality of life.

Mental Retardation

The American Association on Mental Retardation (AAMR, 1992) defines mental
retardation as follows: “Mental Retardation refers to substantial limitations in present
functioning. It is characterized by significantly subaverage intellectual functioning,
existing concurrently with related limitations in two or more of the following applicable
skill areas: communication, self-care, home living, social skills, community use, self-
direction, health and safety, functional academics, leisure, and work. Mental Retardation
manifests before age 18” (p. 5). This definition attempts to prevent the labeling and
subsequent stigmatization of individuals who may score in the range of retardation on an
intelligence test. It also identifies possible incongruence between an individual’s
measured level of intelligence and the ability to function within the norms of the home,
school, or neighborhood environment (Sharpton & West, 1996).

There are four important assumptions made regarding this definition. First,
assessments must take into consideration cultural or linguistic diversity as well as

individual communication and behavioral differences. Second, assessments consider the

13

community context, specifically the skill level typical of the same age peers. Third,
assessments consider skill strengths especially in comparison to identified deficits.
Finally, it is assumed that when given the appropriate supports, there will be
improvement in areas that are related to life functioning (Langone, 1996).

Historically, mental retardation was described by levels of severity (e.g., mild,
moderate, severe, profound) which were defined by the deviation from the norm of
individual’s measured level of intelligence (Langone, 1996). The current AAMR (1992)
definition no longer defines individuals by level of severity. Individuals are classified by
the levels of support in their lives. The four levels are: (l) episodic or short term during
the life span; (2) limited support over longer periods of time; (3) extensive support
provided as a regular service; and (4) pervasive support that is constant and intense and
may even be life-sustaining (Langone, 1996). While these levels of support seem to
parallel the categories of mild, moderate, severe, and profound, they are fundamentally
different. In line with the AAMR 1992 definition of mental retardation, the levels of
support approach attempts to prevent labeling based solely on IQ. This approach also
recognizes that labels do not necessarily predict what individuals need (Langone, 1996)
to ultimately improve the quality of life that is experienced Rather, these categories look
at the individual’s needs and subsequently how to provide support for the identified needs
in order to reach life goals (Langone, 1996). Reception toward these changes in
categorization has been favorable, although it is doubtful that use of the historical
categories (e. g., mild, moderate, severe, profound) will be totally replaced by the levels
of support. This change will be difficult given that they have been a standard for so long

and that they provide a better understanding of an individual’s cognitive functioning.

14

History of Services for People with Mental Retargtjgg

While life in the United States in general has experienced change during this
century, there have also been tremendous changes in the lives of people with mental
retardation during this time. These changes can be attributed to legislation, philosophical
changes, paradigm shifts, and philosophically based interventions.
Leash—fig

Legislation in the past thirty years has been important in attempting to improve
the lives of people with mental retardation. The following legislation has been directed
toward virtually every area of service provision, particularly educational, residential, and
vocational (Wolfe, et al., 1996). Starting in 1970, The Developmental Disabilities
Services and Facilities Construction Act (PL. 91-517) introduced the concept of
developmental disabilities, which includes mental retardation, as a unique segment of the
disability population (Wright, 1980). In 1971, Title XIX of the Social Security Act (PL.
92-223) required intermediate care facilities for people with mental retardation to provide
“active treatment.” This required the time of the people served in these facilities be
“programmed” throughout their waking hours. In 1975, The Education of All
Handicapped Children (PL. 94-142) guaranteed a free and appropriate education to all
children in the “least restricted environment” (Rubin & Roessler, 1995; Wright, 1980).
This was the beginning of “mainstreaming” and integration into the regular classroom
setting for many children with disabilities who were segregated in “special” educational
settings.

In 1990 there were three key pieces of legislation that impacted individuals with

developmental disabilities. First, The Developmental Disabilities Assistance and Bill of

15

Rights Act, emphasized empowerment for people with developmental disabilities along
with protection and advocacy (Wolfe, et al., 1996). The Education of the Handicapped
Act Amendments (PL. 101-476) changed the name of the law to the Individuals with
Disabilities Education Act (IDEA) to reflect “person-first” language. It also expanded
the definition to include students with traumatic brain injury, autism and projects for
students with serious emotional disturbances. There was also an emphasis placed on
transition planning fiom school to work (Rubin & Roessler, 1995; Wolfe, et al., 1996).
The Americans with Disabilities Act (ADA) offered civil rights to individuals with
disabilities, required reasonable accommodations of employers, and also extended rights
to accessible employment settings, public transportation, and public establishments
(Wolfe, et al., 1996). In 1992, the Rehabilitation Act Amendments (PL. 102-569)
provided support for the service systems which assisted employers in finding assistance
and expertise to meet the reasonable and appropriate job accommodations of the ADA. It
also established a basis in the adult service system for accomplishing transition
preparation, planning and implementation as called for in IDEA. One other important
result is that it put the abilities and choices of people with disabilities first as it challenged
the service systems and community to support the individual’s efforts to work, live, and
participate in the community.
Philosophical Change in Services Towardgn Inclusion Mfl

The crux of various paradigms we see today in the field of mental retardation was
initiated in the late 19605 with Wolfensberger’s principle of normalization

(Wolfensberger & Tullman, 1991 ). “Normalization implies as much as possible, the use

16

of culturally valued means in order to enable, establish, and/or maintain valued social
roles for people” (p. 202).

Philosophical changes have subsequently infi uenced service. In the 19605 there
were fewer than 100 community residences and virtually no community services for
people with mental retardation (Braddock, 1994). The institutional per diem was less
than $10 (Department of Health Education, and Welfare, 1968, as cited in Braddock,
1994). The landscape of services is quite different today. Thus the theory of
normalization has had great impact on the lives of people with mental retardation,
particularly with regards to deinstitutionalization. Nationally, deinstitutionalization over
the past 25 years has changed services for people with mental retardation by
systematically dismantling bureaucratic structures while creating a system of community
services (Bradley, 1994). The advocates of deinstitutionalization for people with mental
retardation assumed that greater happiness would be the inevitable outcome. However, it
is important to remember that while research has shown that deinstitutionalization has
provided better care and physical services, there is also evidence that community living
“did not provide a social or psychological milieu” much different than the segregated
institution (Bradley, 1994). Heal (1980) stated that normalization has “pervaded the
development of community services.” (p. 39)

With regards to paradigm shifts, Condeluci and Williams (1997) recognized the
importance of the history of rehabilitation in the development of the concept and the
understanding of the importance of community inclusion. Early in the history, the goal of
rehabilitation was to “fix’ people with disabilities. This has evolved to the current

philosophy that identifies people with disabilities as “consumers”. The medical model,

17

which was the early model of rehabilitation, identified people as “sick, ill, deficient, or
defective.” (p. 113) The perception was that there was something wrong with the
person. The treatment plan was designed to cure the person. Another key aspect of this
former model was that it was both designed and administered by the rehabilitation
professionals who were considered experts. The model devalued the person with a
disability and the individual would be made to feel inappropriate and inadequate in roles
in society.

In a similar description of the shift, Racino (1994) compares the differences
between the Rehabilitation Paradigm, the Independent Living Paradigm, and the
Support/Empowerment Paradigm in terms of the definition of the problem, locus of the
problem, social role, solution to the problem, and desired outcomes. Table 1 (Racino,
1994) presents a framework of this paradigm shift. The shift toward a
support/empowerment paradigm exemplifies the increasing desire by consumers and
advocates toward an inclusive society where responsibility and power are shared and
genuine alliances are formed among people with disabilities, professionals, and
community members. The concept of support can be described as “an act or set of
actions, am attitude or set of values, a feeling, or personal experience, a set of standards
or expectations, a relationship descriptor, and an expected goal or accomplishment
(Racino, 1994, p. 173). In terms of an agency perspective, support can be defined as
formal/paid, or infonnal/unpaid/natural. The developmental disability field is moving

toward community life utilizing formal support with the goal of developing informal

supports.

18

As a result of several factors, which include a lack of opportunity and power (Keys,
Balcazar, Bartunek, & Foster-Fishman, 1995), people with mental retardation continue to
be marginalized and stigmatized within American society (Miller & Keys, 1996). There
have been many programs and interventions designed to help consumers adjust to these
paradigm shifts and to also enable them to take responsibility for their lives. There have
been many programs or interventions developed to address these philosophically based
changes. The promotion self-advocacy has been an attempt at identifying and addressing
this need. Cone (1994) has described self-advocacy as seeking one’s rights, including
hrunan, civil, or legal. Self-advocacy can vary in terms of structure. “Formal” self-
advocacy tends to be more structured and addresses change through a system typically
legal or legislative. “Informal” self-advocacy is much more individualistic, while
utilizing and fostering concepts such as empowerment (Miller & Keys, 1996; Zirpoli,
Wieck, Hancox, & Skarnulis, 1994) and self-determination. Since 1973 the self-
advocacy movement has continued to grow providing training, information and support
to people with mental retardation and their families (Browning, Thorin, & Rhoades,
1984). One such training program found in the United States is Partners in
Policymaking, “a program designed to provide information, training, resources, and skill
building in the area of developmental disabilities to families of young children with
disabilities. The program’s goals include educating people about historical perspectives,
current issues, and state-of-the-art approaches; informing them about how policies are
made at local, state, and national levels; and empowering people to pursue their own

agenda so that they may obtain the best available services” (Zirpoli, et al., 1994, p. 423).

19

Table 1

Comparison of the Rehabilitation, Independent Living, and Support Paradigms.

 

Focus

Rehabilitation Paradigm

Independent Living Paradigm

Support Paradigm

 

Definition of
the Problem

Locus of the
problem

Social Role

Solution to
Problem

Who is in
Control

Desired
Outcomes

Physical impairment,
lack of vocational skill,
psychological
maladjustment, lack of
motivation and
cooperation

In the individual

Patient or client

Professional intervention

Professionals

Maximum daily
activities, gainful
employment,
psychological
adjustment, improved
motivation, completed
treatment

Dependence on
professionals, relative, and
others; inadequate support
services; barriers including
economic architectural,
and environmental

In the environment, or in
rehabilitation process

Consumer

Peer counseling, advocacy,
self-help, consumer
control, removal of barriers
and disincentives

Consumer

Self-direction, least
restricted environment,
social and economic
productivity

Attitudinal political,
economic, and
administrative barriers to
societal participation,
inadequate supports within
society.

In society or environment;
in rehabilitation process

Co-worker, community
member, neighbor

Redesign schools, homes,
work places, health care,
transportation, and social
environments to include all.

People in alliance with each
other

Pluralistic society inclusive
of all people; quality lives
as defined by people
themselves, self-direction
embedded in collaborative
decision making and solving
problems

 

20

Self-Advocates Becoming Empowered, was formed in 1991 in an attempt to
nationally unite grass root organizations. Such groups include People First, People in
Action, The Advocates Voice, and Speaking for Ourselves (Miller & Keys, 1996). These
groups may not share one name but they do share a common purpose and ideology as
stated by Self-Advocates Becoming Empowered. This basic mission is to “teach
individuals with developmental disabilities to speak out for their beliefs while learning
about their rights and corresponding responsibilities as citizens in the United States”
(Miller & Keys, 1996, p. 313).

Community Inclusio_n

In this research, community inclusion is being defined as a psychosocial
construct. In order to understand this perspective of community inclusion, it is helpful to
have knowledge of the following components: (a) community integration, (b) social
role, (c) choice, and (d) support.

Community Integrafln

Community integration is one component of the more complex construct,
community inclusion. Community integration was initially intended to be an approach to
accomplish the desegregation of people with disabilities (Racino, 1994). There are a
variety of historical and conceptual definitions that describe integration. Educational
systems were the first to begin to define and address integration by providing classroom
mainstreaming opportunities for children with disabilities, including students with mental
retardation. These children were given the opportunity to receive their education in a
“regular” classroom while continuing to receive needed special education services

(Gearheart, Weishahn, & Gearheart, 1988). Racino (1994) states that community

21

integration has also been viewed as the establishment of lifestyle and routine, similar to
that of others, usually service workers. Racino (1994) also points out that “To some
extent, community integration in practice was something that people without disabilities
do to people with disabilities...” (p. 186), thus identifying the contradiction between
theory and practice. While community integration has as its purpose the desegregation of
people with mental retardation, the reality is that segregation still exists just in a different
environment. Without social interaction between the person with the disability living in
the community and other people in the community segregation continues to exist at some
level (Storey, 1993).

Wolfensberger and Tullman (1991) delineated the difference between physical
integration and social integration. Physical integration is merely physical presence in the
community. This has been a concern with the limitations of deinstitutionalization and
mainstreaming where physical presence is achieved in the community (housing) or the
classroom (edueation) but, does not necessarily result in social participation.

In practice, programs serving a population of individuals with mental retardation
are often described as inclusive or integrative if the individual is given the opportunity to
leave the institution or sheltered setting for a time period. This author witnessed this
practice. For example, the terms community inclusion and community integration, have
been used when large groups (8-10) of people with mental retardation were taken on van
rides but never leave the van. The terms have also been used to describe trips to malls,
bowling alleys, movie theaters, etc., where the agency staff exposes the group to an
activity in a public environment but the experience of the participants continues to be

segregated.

22

This social segregation seems to persist for several possible reasons including: (a)
lack of choice for the individual, either prior to or during the experience, due to inability
to make choices by the individual, lack of provider resources to make choices available,
or attitudinal barriers on the part of the staff or individual concerning the individuals
ability to make choices; (b) prevention from appropriate interaction with community
members during the experience possibly due to either behavioral issues that the
individual may possess or attitudinal barriers created by the staff or community members;
or (c) obstruction from full participation in the activity due to variables such as group
size, lack of available staff, or environmental barriers.

Bercovici (1981 ), who stated that many studies have identified the degree to
which people experiencing deinstitutionalization have been successful in terms of
adapting to the community, supported this observation. Unfortunately, less is known
about the nature of the contacts in the community and the phenomenon of community as
defined by the person with a developmental disability. Adjustment to the community has
frequently been operationally defined as staying out of a public institution, staying in
alternative settings, or avoiding other forms of public supervision and assistance
(Bercovici, 1981).

Social integration, as defined by Wolfensberger and Tullman (1991), encourages
“devalued” people to participate in the community within a social context rather than
simply a physical context in order to gain value. They have stated that it may actually be
harmful for large numbers of people to be sent out of institutions and into society without

providing the means to become valued members of society.

23

While attempts have been made to measure community integration, the attempts
have had a tendency to be one dimensional, typically focusing on the activity in terms of
location, frequency, and duration, rather than how the individual defines the experience
in terms of participation, value of experience, and social role. The movement from
institutionalization to life in the community has proven to be physically and medically
beneficial for people with mental retardation. However, community integration in the
physical sense within the community environment does not guarantee that the person will
experience community inclusion in the full sense because the person may continue to
experience social segregation.

The Impgrtance of Socigl Role

Maslow (1954), the personality theorist, proposed that there is a hierarchy of
human needs. These needs operate from one of three levels: fundamental, psychological,
and self-actualization (Wortman & Loftus, 1988). Fundamental needs are those needed
for basic survival such as food, water, and shelter from the elements. Maslow contended
that people must first meet their most elemental needs before they can address their needs
at a higher level. If these fundamental needs are met, the individual advances to meeting
psychological needs (i.e., belongingness and love) (Newman & Newman, 1991).
Examples of psychological needs are the need to affiliate with others, the need to be
accepted, and the need to belong. Psychological needs also include needs associated with
self-esteem such as the needs to achieve, to be competent, and to fill a social role
(Wortman & Loftus, 1988). Self-actualization needs specifically relate to the needs to

fulfill one’s potential (Wortman & Loftus, 1988).

24

While the specific aspects of Maslow’s theory have not always supported (Paulis
& Garcia, 1991; Wortman & Loftus, 1988), the basis of the theory which assumes that
needs motivate behavior, and more specifically one’s task performance has been
validated (Wortman & Lofius, 1988). Maslow’s theory also relies on the basic belief that
the individual has the ability to make choices that will impact his or her life.

Given current service practice, it is probable that most individuals with mental
retardation who are in a service system have met their survival needs, whether they have
met these needs themselves or have them met by others. If one can assume the validity of
Maslow’s theory of the hierarchy of needs and it’s application to individuals with mental
retardation, then one could also assume the emergence of psychological needs for people
with mental retardation given that more basic needs are met.

Wolfensberger and Tullman (1991) stated that people with disabilities are often
“devalued” and are typically a) segregated from society, b) grouped with other
“devalued” people, and c) served by less competent workers than “valued” people. They
stated'

“Normalization requires that a devalued person or group has the opportunity to
be personally integrated into the valued social life of society. Devalued people
would be [able] to live in normative housing within the valued community and
with valued people; be educated with their nondevalued peers; work in the same
facilities as other people; and be involved in a positive fashion in worship,

recreation, shopping, and all other activities in which the members of society

engage.” (p. 213)

25

In the field of mental retardation, the concept of social role was introduced in
1982 (Elks, 1994). Wolfensberger (1983) identified the need that all people have to play
roles in society. The greater the exposure and opportunity (integration), the greater the
chance that the individual will be assimilated into society. Social-role valorization is the
means of attaining social roles in the attempt to increase one’s value in society
(Condeluci & Williams, 1997).

Theorists (Maslow, 1954; Wolfensberger, 1983) identify the importance feeling
valued by holding social roles in our society. . Developing social role is the link to
developing relationships, particularly friendships. Condeluci and Williams (1997) state
that “people become known more for the relationships they develop than for how they
perform or function” (p. 112). Thus, it is not sufficient to merely have a physical
presence within the community, or even simply to interact with others. One must form
relationships that help to develop and define the individual’s social role. Therefore, the
development of social role has bearing on community inclusion and has been determined
to be a necessary component in this construct.

Chaise

Adults in the general population rarely have other people making day to day
decisions for them, such as when they go to bed, what they eat for meals, what they
should wear and who they should spend free time with (Pierce, Luckasson, & Smith,
1990). The availability of choice has been identified as an important link to quality of
life (Hughes, Hwang, Eisenman, & Killian, 1995; Stancliffe & Parrneter, in press). Until
approximately 20 years ago choice was not an issue for people with mental retardation

(Houghton, Bronicki, & Guess, 1987; Lancioni, O’Reilly, & Emerson, 1996). Prior to

26

this time they were not given choices, rather staff members were charged with making
decisions in the individuals’ best interest. Lancioni, et a1. (1996) provided a review of
research regarding the issue of choice for people with severe and profound developmental
disabilities. The review led them to make three conclusions: (1) most people with
developmental disabilities seem to be able to make choices and express preferences at
some level; (2) providing choices within individuals’ daily lives is still a rather new and
limited experience; and (3) the benefits of individual choice making need to be assessed
further.

There is evidence tint the opportunity for choice is correlated with adaptive
behavior and level of mental retardation (Schalock, 1994; Stancliffe & Abery, 1997;
Stancliffe & Wehmeyer, 1995; Wehmeyer & Metzler, 1995). The greater the severity of
mental retardation the less opportunity there tends to be with regards to choice. The lives
of people with severe mental retardation tend to be subject to greater programming,
uniformity, and restrictions (Stancliffe & Abery, 1997). Therefore, when assessing
choices available for people with severe mental retardation, Stancliffe and Abery (1997)
suggested assessing choice in every day activities such as clothing, meals, or bedtime.

A definition of empowerment, that specifically refers to people with disabilities,
states that “empowerment refers to the capacity of disenfranchised persons to understand
and become active participants in matters that affect their lives” (Bolton & Brookings,
1996, p. 256). Thus, the ability and opportunity to make choices is important to the lives
of people with mental retardation. This ability and opportunity is compatible with the

ideas presented in the rehabilitation and normalization philosophies.

27

To this end, despite the fact that service programs have attempted to eradicate
segregation of people with mental retardation, lack of participation in an integrated social
environment is not necessarily bad if the individual is in the segregated environment by
informed and active choice (Bullock & Mahon, 1992). Thus, choice is an essential
component to the experience of community inclusion in that community inclusion
requires the ability and opportunity for choice.
initial

In both research literature and agencies services there has been an emphasis on
the importance of the provision of support. There are three key methods of providing
support for people with mental retardation: (a) paid support, which is typically referred to
as supported living or supported employment and is performed by a person who is a paid
disability service provider and who provides assistance, feedback, companionship, or
contact to assist a person with a disability participate in a work or community setting; (b)
natural support, which is provided by someone who is not a paid disability service
provider and who provides assistance, feedback, companionship, or contact to assist a
person with a disability to participate in a work or community setting (Storey & Certo,
1996); and (c) peer support which is someone who also has a developmental disability
who provides support in the form of assistance, feedback, friendship, or advocacy.

Quality of Life

As previously stated, there is a growing recognition that inherent in the
development of all rehabilitation programs is the goal of improving quality of life (qol)
for the consumers that are being served by the program (Condeluci & Williams, 1997 ;

Halpem, 1994). Thus, there has been increased attention given to the construct of

28

quality of life and also the desire to measure it (Fabian, 1991). Supporting this,
Landesman (1986) believes that it is important to define quality of life in order to
construct innovative programs that will achieve the desired quality of life outcomes.
Despite attempts, researchers have identified problems with the use of quality of life
assessments including: a) ambiguity in definitions of the construct; b) difficulty in
constructing an instrument to measure the construct; and c) lack of understanding of how
to use responses to improve quality of life for the population of people with disabilities.
There are varied definitions of quality of life. Fabian (1991) identified three
broad approaches, all of which are used as approaches to measure quality of life
outcomes. The first measurement approach considers quality of life as ratings of adaptive
frmctioning. Adaptive fimctioning often has been used as an indicator of quality of life
when an individual cannot respond by self-report either due to lack or limited physical or
cognitive ability. Baroff(1986) asserts that quality of life is theoretically related to
adaptive functioning with the argument that the greater amount of integration in the
community the higher the level of competency in various environments and the higher
one’s quality of life will be. Fabian (1991) has identified some problems with adaptive
fimctioning as an indicator of quality of life: a) there is a lack of empirical research to
support the relationship between adaptive functioning and quality of life; b) if one
believes that quality of life is at least in part subjective, then this form of measurement is
insufficient; and c) there is controversy regarding appropriate criteria (e.g., deficits versus
strengths) for measuring adaptive functioning. Although adaptive firnctioning is a
promising addition to quality of life assessments, there remain unresolved issues

regarding the appropriate criterion behaviors, the mixture of satisfaction scales with

29

adjustment scales and the nature of the relationship between subjective well-being and
adaptive functioning (Fabian, 1991).

The second approach to measurement of quality of life is using social indicators
to measure changes in response to services and programs provided. Social indicators are
defined as objective measures of quality of life because they include data such as
unemployment rates, medical history, and socioeconomic status. Social indicators as a
means of measuring quality of life may be useful in rehabilitation program evaluation.
Such indicators provide a measurable change in quality of life of the individuals targeted,
given participation in a specific program. But this form of measurement does not take
into consideration the importance of the indicator to the individual.

The third approach is to consider quality of life as a subjective experience,
typically by self-reported level of life satisfaction across multiple domains including
transportation, vocational/employment, housing, education, spiritual fulfillment and
leisure/recreation (Halpem, 1994). Taylor and Bogdan (1996) state that quality of life is a
subjective experience. People experience the same circumstances differently. What
enhances the quality of life of one person, may detract from another. Thus, some feel
that quality of life should be evaluated in terms of personal values and nwds (Flanagan,
1978; Parmeter, 1992). This assumes that the individual respondent is able to express
satisfaction across domains and tlurt the individual’s prior life experiences are sufficient
for deriving a standard for the current conditions. Self-reports of life satisfaction require
that respondents have the ability to form judgments. This has typically been a source of
contention when the respondents are individuals with developmental disabilities,

specifically mental retardation.

30

Halpem (1994), in defining quality of life identified fifteen outcomes that are
associated with three domains. These three domains include: (a) physical and material
well-being; (b) performance of adult roles; and (c) personal fulfillment. The first
domain, physical and material well-being has four basic outcomes including: (a) physical
and mental health, (b) food, clothing and lodging; (c) safety from harm; and (d) financial
security.

These are also compatible with Maslow’s basic needs. The second domain,
performance of adult roles includes the following outcomes: (a) mobility and community
access; (b) vocation, career, employment; (c) leisure and recreation; ((1) personal
relationships and social networks; (e) educational attainment; (f) spiritual fulfillment; (g)
citizenship; and (h) social responsibility. Halpem (1994) states that these outcomes also
describe community integration, community adjustment, and independent living. The
third domain, personal fulfillment, includes the three outcomes of (a) happiness, (b)
satisfaction, and (c) a sense of general well-being.

Fabian (1992) noted that the choice of method of measurement and subsequent
instrument should depend on the nature of the disability and the purpose for which the
approach to assessing quality of life is intended There is evidence that circumstances in
one’s life and subjective evaluation of circumstances may be independent, reflecting the
complexity of the manner in which individuals find meaning in their experiences and
underscore the importance of subjective outcomes.

Assessing Qualig of Life
Hughes and Hwang (1996) suggest that there are two sets of variables that

influence quality of life: person variables and environmental variables. Person variables

31

include demographics such as age, marital status, income, severity of disability, level of
support needed, and community adjustment. Environmental variables include work
conditions, living conditions, residential opportunities, and availability of services and
support.

Felce and Perry (1996) suggest a similar but more comprehensive model of
quality of life that includes objective life conditions, subjective well being, and personal
values and aspirations. Objective life conditions are the person and environment
variables defined by Hughes and Hwang (1996). Subjective well being is defined as the
level of satisfaction with each of the indicators in the life condition. Personal values and
aspirations capture the importance of objective life conditions to the individual. In other
words, a comparison of measures of current life situation, subjective satisfaction, and
personal values and aspirations identifies the “goodness of fit.”

Harner and Heal (1993) assessed the psychometric properties of the Multifaceted
Lifestyle Satisfaction Scale (MLSS) which looks at the following domains: living
arrangements and communities, personal relationships, recreation and leisure,
employment, and degree of self-direction. They found that the MLSS appears to be
reliable and valid for assessing subjective life satisfaction in the areas of living
arrangement, friendships, recreation, employment, and self-direction. The specific
subscales used in this research were: (a) community satisfaction, (b) fiiends and free
time satisfaction, (0) job satisfaction, (d) recreation and leisure satisfaction, (e)
satisfaction with services, and (t) satisfaction with interpersonal interactions. The MLSS
was developed to address the need for a reliable and valid scale to assess life satisfaction

for people with mental retardation within various life domains. In their review of

32

literature, Harner and Heal (1993) identified several factors associated with successful
placement in community settings, including: sense of belonging, personal benefactors,
social networks, employment, social behavior and skills, and support services.

The Consumer Satisfaction Survey (Temple University, 1988 as cited in Sands &
Kozleski, 1994) was designed to evaluate the constructs consumer satisfaction and
quality of life for people with developmental disabilities. The constructs are examined by
responses to items in the following areas: (a) services received, (b) satisfaction with
services, (c) independence/interdependence, ((1) community activities, (e) productivity,
and (f) needs for supports, services, and assistance (Sands & Kozleski, 1994). Using this
survey, Sands and Kozleski (1994) compared quality of life of people with and without
developmental disabilities and found differences on several dimensions. For example,
adults with disabilities were less likely to be married, and more likely to lack stable
intimate partners. Also, people with disabilities rated themselves as having low to
moderate independence. More importantly, people with disabilities reported less
opportunity to make choices.

The Quality of Life (QOL) Interview (Lehman, 1988 as cited in Fabian, 1992) is a
structured interview which assesses an individual’s life experiences across eight life
domains including: living situation, family social relations. leisure activities, physical and
mental health, safety, finances, and work/nonwork. This protocol was specifically
prepared and assessed with people with severe mental illness. The interview elicits both
objective and subjective data in each of the life domains. Reliability coefficients for

people with severe mental illness ranged from .79 for global life satisfaction to .88 for

33

satisfaction with living situation. The test-retest reliability ranged from .41 for
satisfaction with safety to .95 for satisfaction with work (Fabian, 1992).
Summag

This study was informed by knowledge generated in the fields of mental
retardation, rehabilitation, rehabilitation counseling, psychology and special education.
The literature review substantiated the importance of community integration, social role,
support, and choice in studying the phenomenon of community inclusion. A study such .
as this was necessary to begin to define and measure community inclusion with a more
holistic and psychosocial nature rather than the typically used definitions that define

community inclusion as merely a measure physical presence in the community.

34

Chapter III
METHODOLOGY
The purpose of this study was to operationalize community inclusion and
understand the experience for people with mental retardation. Community inclusion was
operationalized using measures of community integration, social role, social support, and
choice. To examine the utility of this multi-dimensional measurement approach the
reliability of the measures were examined Cronbach alphas were used to examine the
internal consistency of the measures. A correlation analysis of the relationship among the
four components was also performed to better understand the contribution of each component
to the comprehensive concept of community inclusion. The relationship between community
inclusion and quality of life was also examined Quality of life was measured using a
subjective measure of life satisfaction and the objective measures of adaptive behavior and
social indictors. To further explore the value of the measures the scores on each measure and
the total of all measures were compared by agency program. The research questions are as
follows:
(1) Are the measures for each of the components of community inclusion (community
integration, social support, social role and choice) reliable?
(2) Is there a relationship between proposed components of community inclusion:
community integration, social role, social support, and choice?
(3) Is there a relationship between community inclusion and quality of life?
(4) Is there a difference in scores on measures of community inclusion for people in different

agency programs?

Specific hypotheses as well as measures used to evaluate each question are listed in Table 2.

35

Research Site

Clinton-Eaton-Ingham Community Mental Health Community Services for the
Developmentally Disabled in mid-Michigan was the site of this study. Within this
comprehensive mental health agency is the division of the agency that serves people with
developmental disabilities, Community Services for the Developmentally Disabled herein
known as CSDD. The mission of CSDD reflects a commitment to community inclusion.
“The mission of CSDD is to promote and support ongoing choices and opportunities for
maple and their families to be full and equal citizens in the community” (K. Slater,
personal communication, June 10, 1996).

During the early 19905 the agency conducted client satisfaction surveys. In these
surveys, clients expressed that they were not satisfied with their sheltered workshop
placements. The sheltered workshops were developed in the 19605 and 19705 as ways to
train and prepare people with disabilities to work in the community. Unfortunately, they
became permanent placements for many people, some of whom are still being served at
the same workshops. The surveys showed there was a desire expressed to work,
volunteer, and participate in recreation in community settings (R. Coelho, personal
communication, April, 1996). This initiated change and evolved into the current agency
structure that has a community inclusion focus. The various agency programs include:
Vocational Services, Transitions North and South, and Transitions Central.

Vocational Services

The vocational services division of CSDD attempts to help consumers find and

maintain paid employment. Typically, the employment is part-time with minimum wage

pay. All consumers currently receiving vocational services within an employment setting

36

continue to receive support from agency staff. The range of this support from agency
staff is from one hour per month to six hours per day with the latter being offered on a
short term basis. In providing support services, the possibility of fading by paid staff
must be foreseeable. Fading is the gradual reduction of paid support as the consumer’s
ability to work independently and as natural supports (a person not paid) are developed
within the work site (T. Knudtson, personal communication, June, 1998).
Transitions

There are two Transitions sites, North and South, that CSDD consumers may
attend. Each Transitions site has two groupings. Transitions l is what would familiarly
resembles a sheltered workshop setting in which consumers participate in pre-vocational
skill development and paid piece-work. The programs provide community integration
activities (i.e., trips to community locations), as well as other activities promoting
inclusion (i.e., support groups, advocacy training) (Daniel DeVaney, personal
communication, May, 1996). This research used the North and South Transitions 1
consumer lists. Transitions 2 is an Adult Daily Living (ADL) center. The consumers at
Transitions 2 (the ADL center) have high personal care needs. The daily programs
typically focus on teaching consumers daily living skills and providing personal care
needs. Consumers within Transitions 2 the ADL center typically have limited
communication skills and poor receptive language ability. Given these limitations no
participants were sought from the Transitions 2 settings.

In 1993, CSDD accepted a grant from the Michigan Department of Mental Health
to develop a community inclusion project called Transitions Central. An integral part of

the Project’s philosophy is that community inclusion be addressed through regular

37

volunteer, leisure, education and employment activities. It was the belief of the Adult
Day Service administrator (Daniel DeVaney, personal communication, May, 1996) that
community integration and inclusion would become a reality if paid employment was not
considered the only outcome. While the Project continues to actively promote the
development of paid employment sites by the staff, there is also the opportunity for
volunteer, leisure, and educational sites to be developed. It was also the belief that these
unpaid experiences could be beneficial in developing the skills for paid employment.
The success and satisfaction of the consumers in this project influenced the initiation of
programmatic changes in Transitions North and South. The agency has focused on
providing consumers in the Transitions programs the opportunity to experience a variety
of community activities at volunteer, leisure and educational sites. One objective of these
activities is to give consumers the opportunity to develop and express preferences.
Recruitment of Participa_r_rts

The target population for this research are adults with mental retardation residing
outside of the institutional setting (homes having less than 16 people in the residence)
who are consumers of services at CSDD. Volunteers were recruited from two agency
programs including Vocational Services and Transitions (sheltered workshops).
Prom Lists

One list of participants from the Vocational Services Program was obtained Two
lists of participants from Transitions were obtained. Two names on the Vocational
Services list that were from another program (SITS) were used to pilot the measures were
eliminated from the list. The final Vocational Services list contained 141 names. Lists

from Transitions North and South contained 92 and 84 names respectively. The

38

combined three-list total was 315. There were 21 names that appeared on both the
Vocational Services list and one of the Transitions lists. Upon removal of redundant
names, there were then 294 possible participants.

Initially, there was a target number of fifty participants from each list to get an
appropriate sample size. CSDD staff anticipated that there would be a high consent rate.
Therefore it was not deemed necessary to contact all individuals on each list. Rather,
each list was numbered and sixty people from each list were randomly selected using a
random number chart (Hopkins and Glass, 1978). Despite an initial mailing to these
180 randomly selected people, it should be noted that eventually all of the consumers or
guardians on each list were contacted to consent to participate. The following is a list of
results of contacts.

1. There were 126 consumers that consented to participate in the interview process.

2. There were eight names on the Vocational Services list that were later determined to
be closed cases.

3. The whereabouts of four people on the list were unknown to agency staff.

4. There were six guardians who replied that they did not want the consumer to
participate.

5. There were seven guardians who could not be contacted due to inaccurate addresses.

6. One individual had recemly been transferred to a nursing home and could not be
contacted

7. One individual had retired and was no longer involved in services.

8. Ten consumers stated to CSDD staff that they had no interest in participating.

39

9. One consumer agreed to participate but his mother refused to allow him to talk on the
phone to schedule an appointment.

10. Sixteen consumers did not respond to CSDD staff contact.

11. There was no reply from 114 guardians contacted by mail.

Consent Procedures

Some consumers maintain their own guardianship and others have legal
guardians. Of the 294 possible participants, 88 consumers were listed as their own
guardians while 206 had legal guardians that included parents, siblings, community
advocates and lawyers. All procedures approved by the CEI/CMI—I Board and Michigan
State University University Committees on Research Involving Human Subjects
(UCRIHS) were followed. Consent for participation was solicited in three manners.

First, guardians were mailed an envelope containing: (a) a letter from the CSDD
program evaluator overseeing this research, Richard Coelho, (b) a letter from the
researcher introducing the purpose of the research, (c) the consent form for the guardian
to sign and return, and (d) a self-addressed stamped envelope addressed to Richard
Coelho (See Appendix A).

Second, if the consumer did not have a guardian or if the guardian provided
consent then consent was sought from the consumer. A CSDD staff member was asked
to approach each consumer to introduce the project by reading the Community Inclusion
Research-Volunteer Protocol and the Community Inclusion Informed Consent Form.
Every consumer who volunteered was the asked to provide consent to the CSDD staff by

signing the Consumer Consent Form (See Appendix B).

40

Finally, the interviewer, prior to the actual administration of the measure, again
explained the purpose of the research. Each consumer again signed an Introduction and
Consent Form (See Appendix C). After this form was signed the interview began.

There were several guardians and consumers who requested further information
regarding the research or the measures to be used. An agency administrator and/or the
researcher verbally provided this information when requested. There was no follow-up
contact made with either guardians or consumers that did not respond This was in
agreement with guidelines established with the host agency, CSDD, as well as the
University Committee on Research of Human Subjects prior to beginning the research
process.

Instrumentation

Research instruments were needed to measure both community inclusion and
quality of life. To determine the options with regard to instrumentation, a search far
appropriate measures was undertaken. This search included an examination of previously
published studies within the fields of mental retardation, rehabilitation, rehabilitation
counseling, psychology and special education. It also included a search of the internet
and several projects that have published information in such a format. The results of
these searches and subsequent deci5ions regarding measures are discussed in the

following sections.

Communig Inclusion

There were no research instruments located that measure community inclusion by

focusing on the specific components identified by this researcher. Therefore a review of

41

literature was conducted to find instruments or questions to appropriately measure the
components of community inclusion: (a) community integration, (‘6) social role, (0)

support, and (d) choice.

Community lntegflon

The purpose of a measure of community integration is to determine the physical
presence in the community during the past month (30 days) in typical community
settings. Community integration was measured using the Community Activity and
Participation Checklist.

While it is very similar to the measures used by Stancliffe and Hayden (1998)
(Variety of Community Places Used and Social Activities in the Last 30 days) and Sands
and Kozleski (1994) (Participation in Community Activities and Recreation and Leisure
Activities sections on the Community Satisfaction Survey), it has been altered to fit the
community in which the participants live and settings in which they have access. The
measure used in this study, the Community Activity and Participation Checklist
(Appendix D), was completed during the interview by asking the consumer is this was an
activity recently participated in or a community location recently visited. Items 24 and
25 asked the individual if there was any other activity not mentioned that they had
participated. If the individual had partaken in this activity a score of 1 would be
assigned. If there was no participation then a score of zero was assigned. All responses
on this checklist were totaled to provide a range of scores between 0 and 25 to create one
Community Integration score. The higher the score the more the individual participates

in the listed community activities.

42

Table 2

Hypotheses and Measures to Evaluate the Research Questions

 

 

 

 

 

Hypotheses MEASURES
vaothesis for Research Question 1:
The measures for each of the four components 1. Community Activity and
of community inclusion (community Participation Checklist
integration, social support, social role and 2. Social Role Checklist
choice) will be internally consistent. 3. Social Supports Self Report
4. Choice Questionnaire
Hypothesis for Research Question 2:
There will be a statistically significant positive 1. Community Activity and
relationship between proposed components of Participation Checklist
community inclusion: community integration, 2. Social Role Checklist
social role, social support, and choice. 3. Social Supports Self Report
4. Choice Questionnaire
Hypothesis for Research Question 3:
There will be a statistically significant positive 1. Community Inclusion Total Score
relationship between community inclusion and 2. Community Activity and
quality of life. Participation Checklist
3. Social Role Checklist
4. Social Supports Self Report
5. Choice Questionnaire
6. Consumer Satisfaction Survey
7. ICAP score
8. Consumer-Agency Data:
a. Vocational/Day Program
b. Residence
0. Level of Paid Support
(I Health Status
e. Income
f. Use of Physical Aids
g. Behavior program usage

43

Table 2 cont‘d

Hypothesis for Research Question 4:

Community Inclusion Total Score
Participants from Vocational Services will Community Activity and

have statistically significant higher scores on Participation Checklist
measures of community inclusion than Social Role Checklist
participants from Transitions. Social Supports Self Report
Choice Questionnaire

ICAP score

Consumer-Agency Data:
Vocational/Day Program
Type of Residence

Level of Paid Support
Receptive Communication
Expressive Communication
Health Status

Income

Use of Physical Aids
Behavior program usage

Nu—t

99‘9PP’

rams ran 9.0 .crr»

44

Social Role. No appropriate measure or model was found in which the
individual’s social role could be measured. Therefore, social role was measured using
the Social Role Checklist (SRC) which was created for this study. This instrument (See
Appendix E) asked the participant if he/she performs a variety of common social roles
(e.g., friend, church member, club member, significant other, or parent). The SRC is a
list of common roles people hold in the community and the individual responded “yes” or
“no” to whether they performed such a role. Each “yes “ response received a score of
“l A response of “no” or “don’t know” received a score of “0” indicating that, from the
participant’s perspective, this is not a role that the individual holds. At the end of the
checklist the individual was asked if there are any other roles that the individual has in
the community. The interviewer recorded all responses. For each response determined

66],,

by the researcher as a valid community role, a score of was added.

If the response was to any role item was yes, a follow-up question was posed to
find out more information about the role and the responsibilities of the role. A summary
of this response was recorded. The purpose of the follow-up was to gain additional
insight into the roles that people with mental retardation hold in the community and to
reduce the possible response bias of acquiescence. The follow-up responses often added
to the understanding of the roles and the meaning in the life of the individual. A single
total score was calculated The higher the total, the greater number of community roles
the individual is presumed to hold.

Social Sappgrt. For this study, level of support was determined using an adapted
version of the Social Supports Self-Report (SSSR) (Lunsky & Benson, 1997) (Appendix

F) which evaluated the experience of support. The SSSR (Lunsky & Benson, 1997) was

45

adapted from Reiss-Peterson Social Support Self-Report (Reiss & Benson, 1985). The
SSSR is a two-part instrument. Slight changes were made to the language of the
questionnaire to meet the needs of the sample .

First, following the established protocol, the interviewer elicited the identity of
people in the lives of the participant. The questions covered four sources: family, fiiends,
romantic partners, and staff. After gaining a list of potentially supportive people, the
participant was asked to evaluate the quality of the support provided by each source. The

quality of support was determined by asking five questions for each identified person.

 

 

 

These questions are: 1) How often do you see or talk to ? (TALK)

2) How often do you talk to about your feelings? (FEEL) 3) How much
do you like ? (LIKE) 4) How much does help you with
your problems? (PROBLEMS) and 5) How much do you help with

 

his/her problems? (REC IPROC [T Y)
The response choices and assigned values are: “A lot” a score of “3” , “Some” a

‘61,,

score of “2”, and “Not at all” a score of . A score of “0” was assigned if there was
no such person in the individual’s life indicating no support available from such person.
The scores were examined using the total related to each identified person and the
reported level of support.

M Choice was measured using 10 items selected firm the Choice
Questionnaire (Appendix G) (Stancliffe & Abery, 1997). The questions are specific
regarding everyday choices about domestic matters (bed time, cleaning, eating, telephone

use, and owning a pet), staff, money and spending, social activities, community access,

personal relationships, work/day activities, and overall choice. While this scale provides

46

the option of being completed by a knowledgeable proxy (Stancliffe & Abery, 1997), in
this study the questionnaire was completed the questionnaire during the interview
process. For this self-report, the interviewer selects the appropriate score after eliciting
information during the interview through questions and subsequent probes. There are
three possible scores for each item. A score of “3” means that the person reports making
the choice actively, independently and without restrictions all or almost all of the time. A
score of “2” means that the person reports making the choice sometimes, and also usually

6619’

needs help in making the choice. A score of means that the person reports that others
make such decisions.

Stancliffe and Abery (1997) reported very satisfactory reliability for the Choice
Questionnaire in a study of people with intellectual impairment. Consistency coefficients
were .81 for self-reports and .90 for staff responses. Test-retest correlation was .77 for
the item by item agreement on self-report and .85 on staff report with the total score. The
test-retest correlation was .95 for total score correlation on self-report and .89 on staff
report. The mean interrater agreement was 91.9% using 33% of the sample. Content
validity was evaluated by expert review and the questionnaire was judged to be relevant
and comprehensive. Concurrent validity was established by correlating total scores on
the Choice Questionnaire with the Empowerment/Independence scores from the Quality
of Life Questionnaire (Schalock, & Keith, 1993) resulting in a correlation coefficient of
.79 for self-report data and .83 for staff reports. To assess the Choice Questionnaire’s

construct validity, a test of the ability to discriminate between participant’s living semi-

independently or in group homes was performed The t-test yielded a signifieant

47

difference in the expected direction in both the self-report data t(24)—=4.26, p=.001, and
staff reports t(37.8)=5.3, p<.00005.
Quality of Life

The definition and measurement of quality of life (QOL) has been controversial,
specifically when considering the population of people with developmental disabilities
(Day & Alon, 1993). Primarily the debate discusses whether QOL should be measured
subjectively or objectively.

Subject measures of quality of life typically looks at life satisfaction (Day &
Alon, 1993; Fabian, 1990; Schalock, 1990; Schalock, 1994; Taylor & Bogdan, 1990;
Taylor & Bogdan, 1996). Self-reports of life satisfaction require that respondents have
the ability to form judgments. This may be difficult to accomplish when the respondents
are individuals with developmental disabilities, specifically mental retardation.

The objective measures of QOL particularly for people with mental retardation
are typically adaptive functioning and/or social indicators (Day & Alon, 1993; Fabian,
1991; Felce & Perry; 1995; Hamer & Heal, 1993). Fabian (1991) identified several
problems with using adaptive functioning as the indicator of quality of life. There is a
lack of empirical research to support the relationship between adaptive functioning and
quality of life. Using adaptive behavior as a single measure eliminates any subjective
assessment of QOL. Also, there is some controversy regarding the appropriate means of
meastuing adaptive functioning (e.g., deficits versus strengths). Social indicators are
defined as objective measures of quality of life because they include data such as
unemployment rates, medical history, and socioeconomic status. Such indicators provide

a measurable change in quality of life of the individuals targeted, given participation in a

48

specific program, but this form of measurement does not take into consideration the
importance of the indicator to the individual.

Given the contention with the various measures, it has been suggested that QOL
be measured both subjectively and objectively with the population of people with mental
retardation given (Fabian, 1990; Halpem, 1994; Taylor & Bogdan, 1990; Taylor &
Bogdan, 1996). In an attempt to measure QOL as thorough and accurately as possible,
this study used both subjective and objective measures of quality of life. As for
subjectively evaluating quality of life, previous research provided several articles with a
variety of instruments measuring life satisfaction. After an examination of several
instruments, it was determined that it would be best to develop an instrument that would
meet the needs of this specific population while evaluating the construct in a manner
consistent with the study. Objective quality of life was measured using adaptive behavior
scores and social indicators.

Medive Quality of Life

Most people agree that quality of life is primarily a subjective concept
(Borthwick-Duffy, 1997) often referred to as life satisfaction. Life satisfaction can be
measured in various ways, for example, it can be measured through open-ended questions
that ask for an individual’s point of view. It can also be measured by asking for
evaluations to more closed ended questions such as asking for a rating (e.g., using a likert
scale). Finally, life satisfaction has also been described as “goodness of fit.” This is
defined as the fit between the individual’s current life situation and the desires or goals of
the individual (Felce and Perry, 1996). While there are many instruments available for

use in measuring quality of life, and more specifically life satisfaction, these measures

49

did not fit the need of this research. Typically measures were either too long or used
language that was beyond the comprehension level of the target population. The
measure that was developed for this study was specifically designed to meet the
objectives of this study which are to be succinct and comprehensible while also
identifying levels of satisfaction on the part of the participant. Previously established
instruments were used, however, to help develop the content of the instrument used for
this study.

The measure of subjective QOL (life satisfaction) was the Consumer Satisfaction
Survey (Appendix H). The goal was to ask the consumer both their satisfaction and
preference with regard to the life domains of: (a) housing, (b) employment, (c) leisure,
(d) friendships, and (e) overall life satisfaction. For each domain, the participant was
asked if they feel happy, okay or unhappy about the current situation. There was a
corresponding scale that accompanied the three choices used to assist the consumer in
responding. In an attempt to increase the reliability of the responses, the order of choices

99 ‘5

was varied. That is, the choices “happy, okay, ” and “unhappy” were presented in
different order for each question.

The scoring was “1” for a response of unhappy, “2” for a response of okay, and
“3” for a response of happy. The scores from each domain were totaled to one score.
Additionally, consumers were asked follow-up questions in each domain to validate the
responses. The follow-up questions asked participants to identify a preferred situation.

The questions regarding how the participant feels about their life in general were asked at

both the beginning and end of the interview to increase reliability.

50

Objective Qualiv of Life

Adaptive Behavior. Adaptive behavior was measured on the Inventory for Client

 

and Agency Planning (ICAP) (Bruinicks, Hill, Weatherman, & Woodcock, 1986) CSDD
staff completed the ICAP for all individuals receiving residential services from the
agency and this is located in the client case file. The ICAP assesses adaptive and
challenging behavior. Adaptive behavior is measured on four domains: (a) social and
communication, (b) personal living, (c) community living, and (d) motor. Maladaptive
behavior is measured as (a) internalized, (b) extemalized, and (c) asocial. There is an
overall 2-total total score that is converted into a 1-di git service level score. For example,
a person receiving a total score of 55 has a service level score of 5, or a person receiving
a total score of 68 receives a service level score of 6. The service levels range from 1 to
9. Persons at level 1 require total care and supervision, at level 5 require regular care and
close supervision, at level 7 require some care and supervision, and at level 9 require -
infiequent care or supervision. The test-retest and interrater reliability for each domain
ranges from .8 to .9 (Bruinicks, Bradley, Hill, Weatherman, & Woodcock, 1986;
Bruinicks, Woodcock, Hill, & Weatherman, 1985).

The ICAP report was located in the consumer case file. Both the weighted
average score (1-99) and the service level score (1-9) for the ICAP were recorded on a
demographic sheet for each consumer. The ICAP could also be used to provide the
following basic demographic data: (a) gender, (b) date of birth, (c) primary and
secondary disability information, and ((1) level of mental retardation. These data were

transferred to a data information sheet (see Appendix I).

51

SocLal Indicatgs. These were collected on the demographics sheet (see
Appendix 1, items D, E, H, I, J, K, L, and M) that asked for information suggested by
other researchers (Schalock, 1994). The specific data used as social indicators were:
current residential setting, work or day activity setting, level of paid support, health
status, income level, communication level, use of physical aids, and use of a behavioral
treatment plan.

Procedures
De_sign

The purpose of this study was to define community inclusion as well as expand
our understanding of the experience for people with mental retardation from a community
mental health program. After several meetings with agency administrators and staff, an
application to conduct research was approved by Clinton-Eaton-Ingham (CEI)-
Community Mental Health (CMH)-Community Services for the Developmentally
Disabled (CSDD).

DEMO—11m

Consent procedures. Of the approximately 800 consumers at CSDD, there were
294 who were appropriate for participation in this study. This means that the individual
was capable of comprehending and communicating in a manner applicable to the survey
items. Initially this was determined by the individual’s agency placement. Of the
consumers appropriate for the study, some consumers had guardians in the community
who were typically family members, attorneys, or advocates from the community. Prior
to data collection, consent was obtained from all guardians. Envelopes were prepared

with a CSDD transmittal letter, a researcher transmittal letter explaining the study, a

52

consent form for the guardian to sign and return, and a self-addressed stamped envelope.
Once the guardian consent has been received then consent from the consumers with
guardians can be sought.

As for consumers who maintain their own guardianship, and consumers who have
guardian consent, agency staff delivered, and read if necessary, the consumer consent
form. The staff then obtained informed consent from all volunteers to participate. All
volunteers that consented to participate in the study were interviewed.

It is important to note that both the consent letter guardians and the consent form
for consumers stated that once the interview process was completed, the consumer would
be paid five dollars. While this was an incentive for some consumers to participate, the
intention was to compensate the participant for the time spent completing the interview.

ijarview Procedures. Individual interviews were set up once consumer consent
was received. At the interview, the researcher provided an introduction to the study and
then sought consent for participation in the study. The researcher then asked for verbal
consent to participation. Once informed consent was obtained, the researcher
administered the measures: (a) Community Usage Checklist, (b) Social Role Checklist,
(c) Social Supports Self Report, ((1) Choice Questionnaire, and (e) Consumer Satisfaction
Survey. Once was been completed the researcher thanked the participant for their
participation and asked if there were any questions. The participant was then paid five
dollars.

Demographic data collection. Demographic data were obtained from consumer

case files. If the case file was incomplete, case managers or other agency staff personnel

53

were asked to provide such information. The information was recorded on separate
demographic sheets.

Piloting the Interview. While most of the scales used in this research were either
previously used in other research or were variations of scales used in other research, the
interview process including gaining consent, was piloted The pilot participants were
four CSDD consumers recruited from the Supported Independent Transition Services
(SITS) program. CSDD staff reported that consumers in the SITS program would not be
on the lists from the sample population.

Prior to the actual interview the volunteers were briefly told the purpose of the
research and the purpose of the pilot interview. The researcher asked the volunteers to
comment whenever a question was not clear and also to comment if they felt that a break
was needed. During the pilot interviews, the researcher watched the volunteers for signs
of distraction or fatigue. Each interview was timed After each pilot interview was
completed the volunteer provided feedback regarding their experience with the interview.
The researcher asked the following questions. 1) How did you feel about the interview?,
2) Were there any questions that you could not answer? 3) Were there any questions that
you did not want to answer? 4) Do you think that this interview was too long? 5) Is there
anything about community inclusion that you think that I should have asked? 6) Do you
think that $5.00 is a fair amount to pay someone for participating?

The pilot volunteer responses to the above questions were positive overall. There
were no questions identified that the volunteer did not want to answer. Three of the
volunteers reported some difficulty in choosing between response options “a lot” and

“sometimes” and between “sometimes” and “never.” on the Social Support Self-Report

54

items. While this was noted, the volunteers did say that they were eventually able to
make a choice. There were also comments that the open-ended questions regarding life
satisfaction were difficult to answer. It is typical for many people with mental
retardation to have difficulty answering open-ended questions (Sigelman, et al., 1983).
No interview lasted longer than 25 minutes, which was within the timeframe set by the
researcher. The volunteers indicated that the length of the interview was reasonable.

Each consumer was paid ten dollars for completing the interview and responding
to the follow-up questions. The reason these volunteers were paid ten dollars rather than
five was because it required a longer time commitment given the follow-up information
solicited.

One agency case-worker consulted with the researcher to learn more about the
purpose of the research interview and measures. Prior to the interview she provided
feedback regarding the interview protocol including the type and phrasing of questiOns.
She then voluntarily sat in on the interview to assure that questions and responses were
providing the information that the researcher was looking to attain.

Changes were made to the interview protocol process as a result of the piloting
experience and feedback. These changes were primarily in the wording of questions and
the format of the measures to increase participant understanding and to also make data
collection and analysis easier. One example involves the Community Activity and
Participation Checklist. On the pilot interview there were 40 items. Eight of these items
were “Other” responses. These were reduced to two “Other” items. Also, “Church
Service” and “Church Social” were combined to make one item. The items “Civic

Organization” and “Social Group” were eliminated because the pilot participants were

55

not familiar with the meaning of each. Two examples of changes to facilitate analyses
were in the scoring on the Social Support Self-Report and the Consumer Satisfaction
Survey. In each case, the scoring was reversed so that the higher the score the greater the
support or satisfaction. This was done to create compatibility with the score of other
measures.

Data Collection

Interviews. Data for this study was collected from November, .1998 through
December, 1998. The researcher, using the Community Inclusion and Life Satisfaction
Survey as a protocol for the order and asking of questions conducted individual
interviews. An introduction to the study was provided to the consumer who had
previously consented to participate to agency staff. After being introduced to the study,
participants were asked to Sign a consent form (see Appendix K) in front of the
researcher prior to the actual administration of the survey.

The interviews took place in various locations at the convenience of the
participant. While there was always an attempt to secure a private location, this was not
always possible. Some interviews were held in the individual’s family home. Although
parents, spouses, or roommates indicated that they would leave the room to provide
privacy, there was often the indication that eavesdropping had occurred when they
provided additional information to questions after the interview was completed Some
parents would not offer to provide privacy. If the parent wanted to stay in the interview
area the participant was given the option of completing the interview at another time and
place, usually at the work location. No participant indicated a desire to do so. In one

interview at a group home, a staff member stated that it would be necessary for a staff

56

person to be present. The option was given to the participant to conduct the interview at
another time and in another setting. The participant consented to go on with the
interview and given the dissatisfaction that the individual openly expressed about the
home, the researcher determined that the presence of the staff had not suppressed
responses. Other interviews were conducted at work site locations. These locations
typically provided for greater privacy, although two participants selected to be
interviewed in work break rooms that did have some co-worker trafiic. Private interview
rooms were provided at CSDD sites (Transitions North and South) and at another local
vocational center. For two interviews it was necessary to include agency staff to assist in
communication. These participants were asked if they wanted to complete the interview
with the assistance of staff and both agreed

After the completion of the interview, each participant was thanked and given
five dollars.

Case File Data. After a consumer interview was completed, data were gathered
from agency case files. This information was obtained from the CSDD file room by the
researcher and recorded on the individual survey forms.

Stafi Data. If there was demographic data that could not be obtained from the
case file, a CSDD staff member was asked to provide such information. The most
frequently asked question of staff was to provide the number of hours of staff paid
support per week the participant received This was often reported to be difficult to
determine, so staff members were asked to estimate the number of paid support hours.

After the data collection was completed, data entry and analysis were completed

using the SPSS Base 9.0 Grad Pack.

57

Data Analysis

Descriptive statistics were computed on the sample characteristics from the data
collected on the demographic survey. Frequencies for the following categorical
variables were computed: gender, residential setting, day activity setting, health, income
level, receptive communication, expressive communication, and behavior treatment plan.
Mean scores and standard deviations for the continuous variables age and adaptive
behavior as well as for each of the community inclusion measures (Community Activity
and Participation Checklist, Social Role Checklist, Social Supports Self-Report, and
Choice Questionnaire) and the life satisfaction measure (Consumer Satisfaction Survey)
were computed. Distributions of scores were examined for normality by computing
scores of skewness and kurtosis. Skewness measures the symmetry of the distribution
(SPSS, 1999). Normal distribution is symmetric, and has a skewness value of zero. A
distribution with a significant positive skewness has a long right tail while a distribution
with a significant negative skewness has a long left tail. A skewness value greater than 1
generally indicates a distribution that differs significantly from a normal distribution
(SPSS, 1999). Kurtosis measures the peakedness of a distribution or the extent to which
observations cluster around a central point (SPSS, 1999). For a normal distribution, the
value of the kurtosis statistic is 0. Positive kurtosis indicates that the scores cluster more
and have longer tails than scores in the normal distribution. Negative kurtosis indicates
the observations cluster less and have shorter tails (SPSS, 1999).

To examine the reliability of the measures for each of the components of
community inclusion (community integration, social support, social support and choice),

the internal consistency of each measure of the four components of community inclusion

58

was examined. The model of internal consistency, Cronbach’s alpha, based on the
average inter-item correlation was used to determine the internal consistency.

A Pearson correlation was used for this study to determine the relationship
between the proposed components of community inclusion: community integration,
social role, social support, and choice. Another Pearson correlation examined the
relationship between community inclusion and subjective quality of life. This was done
using the total score for community inclusion determined by the sum of scores on the
four measures (community integration, social role, social support, and choice) and the
measure of subjective quality of life (life satisfaction). A Pearson correlation also
examined the relationship between the community inclusion score and adaptive behavior
as measures on the ICAP. A minimum .05 level of significance was used a rejection
level of statistical analyses.

Williams (1992) stated that a correlation “characterizes the existence of a
relationship between variables.” (p. 131) Correlation coefficients indicate the magnitude
of the relationship between variables and the direction of the relationship (positive or
negative) (Williams, 1992). A simple correlation indicates whether two or more variables
vary together either positively or negatively but gives no indication of cause or effect
(Williams, 1992).

Multiple regression analysis was used to examine the relationship between
community inclusion and life satisfaction. The multiple regression method that was
employed was the stepwise method. This procedure used subjective quality of life as the
criterion variable and the four measures for the components of community inclusion as
the predictors. Given the large variation in the numerical scoring of the measures, 2

59

scores were computed for each of the measures. A stepwise regression analyzed the
relationship between community inclusion, the criteriOn variable, and social indicators,
the predictor variables. There were eight predictor variables initially considered. These
were residential setting, work/day activity program, level of paid support in home, level
of paid support in school, health status, income level, use of physical aids, and use of
behavior treatment plan. Given that each of these variables is categorical they were
converted into dummy variables for the analysis.

Multiple regression is a technique used to determine a relationship between a
criterion variable and the best combination or contribution of two or more predictor
variables (Fraenkel & Wallen, 1993; Heppner, et al., 1992; Williams, 1992). The
coefficient of the multiple regression (R) is similar to that of the Pearson correlation and
indicates the magnitude of the relationship. The coefficient of determination is the square
of the correlation and “indicates the variability among the criterion scores that can be
attributed to differences in scores on the predictor variable” (Fraenkel & Wallen, 1993, p.
231). In the stepwise method, independent variables are entered into the analysis. The
regression equation indicates the variables that are best predictors of the specified
criterion (Heppner, et al., 1992). The first variable entered is the one that has the highest
correlation with the criterion variable. The next variable is “the one that results in the
largest increase in R’. This is repeated until adding a variable does not result in a
statistically significant increase in R2. Thus, a stepwise regression identifies the variables
that contribute the most unique variance in the equation and in what order.” (Heppner, et

al., 1992, p. 217-218).

60

Determining differences on demographic data between the two groups was an
important preliminary step to address the differences in scores on measures between the
participants in the two agency programs, Vocational Services and Transitions. True
differences in the two groups needed to be verified. The mean scores for each group on
each of the community inclusion measures (Community Activity and Participation
Checklist, Social Role Checklist, Social Supports Self Report, and Choice Questionnaire)
were computed An independent samples t-test was used to determine significant
differences between the scores of the two groups on the measures. A minimum .05 level

of significance was used as a rejection level on these statistical analyses.

61

Chapter IV
RESULTS
Sample Characteristics

The sample in this study consisted of individuals who were consumers at the
Clinton-Eaton-Ingham (CEI) Community Mental Health Board (CMHB) Community
Services for the Developmentally Disabled (CSDD). Attempts were made to contact the
294 consumers who appeared on agency consumer lists. This yielded 126 consumers who
consented to participate and completed interviews for a participation rate of 42.8%. A
post hoc power analysis indicated that the sample of 126 consumers given a medium
effect size (.15), and an alpha level of .05, would yield a level of power of .9453.

The total sample was composed of 64 (50.8%) males and 62 (49.2%) females.
The age range for the sample spans a minimum of 22 years to a maximum of 86 years
with a mean age of 42.91 yearsLThe skewness of the distribution yielded a statistic of
.660, which indicates normal distribution. The kurtosis analysis produced a statistic of
.810 indicating the reported ages have longer tails than in the normal distribution. Given
that these statistics are not greater than 1 or less than —1 , normal distribution is assumed.
A visual examination of the distribution of the ages of participants using a histogram
indicated that there was an outlier, one participant was 86 years old with the next closest
participant’s age being 73. When the outlier was removed from the analysis the
skewness statistic was lowered to .373 and the kurtosis statistic was also lowered to
-.222, indicating a normal distribution.

The majority of the sample, 71 (56.3%) individuals, lived in a group home. There

were 21(16.7%) individuals who were living independently, either alone or with a

62

roommate or spouse. The other 34 (27%) individuals lived with families in private
homes.

The hours for paid support varied among the majority of the sample in that most
either received no support or total support. In terms of paid support at home, there were
45 (35.7%) individuals who received no paid support while 52 (41 .3%) of the participants
received over 100 hours of support in home per week. Of the remaining 30 individuals,
26 (20.6%) were receiving less than forty hours of paid support per week, three (2.4%)
received 70 hours of support per week.

Two (1.6%) individuals reported being married and two (1.6%) reported being
widows. All participants who are or have been married were consumers of Vocational
Services. In terms of participant health, income, and communication, there was very little
variation. For health status, there were 109 (86.5%) individuals in good health, with only
three (2.4%) individuals in excellent health, eight (6.3%) in fair health, and six (4.8%) in
poor health. There were only two (1.6%) of participants determined to have a moderate
income, and all 124 (98.4%) other participants at low income.

There were 123 individuals who understood spoken language, one individual
(.8%) utilized lip reading, and two (1.6%) utilized gestures or simple pictures to
understand what was being communicated. To communicate, 90 (71.4%) individuals
used sentences or phrases, 16 (12.7%) individuals used limited words, one (8%)
individual used structured sign language, six (4.8%) individuals used a communication
board, and 13 (10.3%) individuals used gestures, noises, or pointing to symbols.

There were 64 (50.8%) participants who needed to use one or more physical aids

(glasses, wheelchair, cane, hearing aid, etc), and 62 (49.2%) who needed no physical

63

aids. There were 29 (23%) participants who have some type of behavior treatment plan
and 97 (77%) who have none.

Participant adaptive behavior was measured using ICAP scores. There were 86
ICAP scores available and 40 missing. The majority of the missing scores were either for
people living independently not actively receiving residential services or for people living
in group homes contracted by CSDD to provide services (rather than a group home
directly run by the agency). The scores available yielded a mean total score of 55.45 with
a standard deviation of 14.2 or a mean service score of 5.5 and a standard deviation of
1.4. The ICAP skewness and kurtosis distribution statistics were -.203 and -.553
respectively. Given that these statistics fall between -2 and 2 normal distribution can be
assumed A visual examination of the scores using a histogram confirmed this
assumption.

The participants in this study were consumers of at least one of the agency
services, either Vocational Services or Transitions. There were 41 (32.5) participants
from Vocational Services and 70 (55.6%) from Transitions. More specifically, 36
(28.6%) participants were from Transitions North and 34 (27%) from Transitions South.
The participants from Transitions North and South are treated as one group given that the
goals and activities of both settings are considered the same. In this sample there were 15
(11.9%) participants who were consumers of both Vocational Services and Transitions.

A decision was made to group these 15 participants with the consumers who were listed
as consumers of Vocational Services only. There were eighteen people who participated

in the interview but did not complete the entire survey.

Demographic variables were examined by agency program (Vocational Services
or Transitions) to determine significant differences between the two groups. Table 3
provides participant demographic information categorized by agency program. In
comparing the characteristics of the two groups, Vocational Services and Transitions,
both similarities and differences were found Gender distribution was found to be similar
between the groups. The Vocational Services group had 46.4% male and 53.6% female
as compared to 54.3% male and 45.7% female in the Transitions group. Another
similarity was in the use of physical aids. Approximately 50% of each group reported
using some type of physical aid Other similarities included health status, income and
receptive communication, which as previously stated had little variation throughout the
sample.

The mean age for participants in Vocational Services was significantly lower
(40.2) than for Transitions (45.1) (t=-.244, p<.01). There were several categorical
variables found to have statistically significant differences. These variables are residential
setting, paid support in home, paid support in vocational/day program, expressive
communication, and behavior plan use. A greater number of participants from
Vocational Services lived in independent settings, while a greater number of participants
from Transitions lived in group homes. Also, participants from Vocational Services
received less paid support, had greater verbal communication, and used behavior plans
less frequently than participants fiom the Transitions program

Commu_nitv Inclusion Measures
There were four measures used as components of the Community Inclusion Score.

These four measures were Community Activity and Participation Checklist (community

65

integration), Social Role Checklist (social role), Social Supports Self-Report (social
support), and Choice Questionnaire (choice). Table 4 presents the mean score and
standard deviation for each measure. The total community inclusion score ranged from
25 to 187. The mean community inclusion score was 104.0 with a standard deviation of
31.96. All measures were reviewed for internal consistency (reliability). Table 5
presents the Cronbach’s alphas for each measure of community inclusion. The alphas for
the Community Activity and Participation Checklist (community integration) (.82),
Social Supports Self-Report (social support) (.87), and Choice Questionnaire (choice)
(.94) were adequate. The alpha for the Social Role Checklist (social role) (.57) is
considered insufficient, although this alpha does not completely limit the utility of the
measure (Heppner, et al., 1992).
Congation of Measures

A Pearson correlation was performed using the four components, community
integration, social role, social support, and choice. The Pearson correlation coefficient
for each of the four components appears in Table 6. Cases were excluded pairwise,
meaning that cases with missing values for one of the two variables were excluded.
When tested for significance, the following pairs were found to have relationships with
correlation coefficients significant at the less than .01 level: Community Integration and
Social Role (.364), and Community Integration and Social Support (.367). The following
pairs were found to have relationships with correlation coefficients significant at the less
than .05 level: Community Integration and Choice (.251), Social Role and Choice (.205),
and Social Role and Social Support (.196). There was no significant relationship found

between Choice and Social Support.

66

Table 3

Participants Demographic Information Categorized by Agency Programs (n=126)

 

 

 

 

 

Grouping Test of
Voc Services Transition_s Significance
Gender
Males 26 (46.4%) 38 (54.3%) x2 = .768
Females 30 (53.6%) 32 (45.7%) DF = 1
Residential Setting
Family Home 21 (37.5%) 13 (18.6%) 12:41.7‘"
Independent 20 (35.7%) 1 (1.4%) DF = 2
Group Home 15 (26.8%) 56 (80.0%)
Paid Support in Home
No Paid Support 32 (57.1%) 13 (18.6%) )6 =41 .4‘“
11-40 Hours 15 (26.8%) 11 (15.7%) DF = 4
41-80 Hours 3 (5.4%) 0 (0%)
Over 100 Hours 6 (10.7%) 46 (65.7%)
Paid Support in
Voc/Day Program
No Paid Support 29 (51.8%) 0 (0%)
Less than 10 hours 3 (5.4%) 2 (2.9%) 1’ =70.5“"
10-19 Hours 6 (10.7%) 4 (5.7%) DF = 4
20-29 Hours 9 (16.1%) 3 (4.3%)
30 or More Hours 9 (16.1%) 61 (87.1%)
Health Status
Excellent 1 (1.8%) 2 (2.8%) x2 = 5.293
Good 51 (91.1%) 58 (82.9%)
Fair 4 (7.1%) 4 (5.7%) DF= 3
Poor 0 (0%) 6 (8.6%)
”p<.01
**"‘P<.001

67

Table 3 cont’d

 

 

 

 

Grormig Test of
Voc Services Transitions Significance
Uses Physical Aids
Yes 31 (44.6%) 37 (52.9%) x2 = .84
No 31 (55.3%) 33 (47.1%) DF= l
Receptive Communication
Understands:
Spoken Language 56 (100.0%) 67 (95.7%) x‘ = 2.46
Lip Reading/Written 0 (0%) 1 (1.4%) DF= 2
Gestures/Pictures 0 (0%) 2 (2.9%)

Expressive Communication

 

Verbally-Sentence/Phrase 51 (91.1%) 39 (55.7%)
Verbally -Limited Words 4 (7.1%) 12 (17.1%) x’ = 2434*“
Using Structured Signing 1 (1.8%) 0 (0%) DF= 4
Using Symbol Board 0 (0%) 6 (8.6%)
Using Gestures, Noises, 0 (0%) 13 (18.6%)
Pictures
"p<.01
***P<.001

68

Table 4

Sample Mean Score and Standard Deviations for Community Inclusion Measures

 

 

 

Measure N Means Score SD
Community Inclusion Total 1 10 104.04 31.96
Community Activity and 126 8.89 4.72
Participation Checklist

Social Role Checklist 124 3.0 1.72
Social Support Self-Report 109 71.0 26.4
Choice Questionnaire 120 20.69 7.71

Table 5

Cronbach’s Alphas for Measures of Community Inclusion

 

 

We N Alpha
Community Activity and 126 .8164
Participation Checklist

Social Role Checklist 124 .5725
Social Support Self-Report 109 .8729
Choice Questionnaire 120 .9392

 

69

Table 6
Correlation Coefficients for Measures of Community Inclusion

n=108

 

Community Choice Social Support Social Role

 

Integration
Community
Integration 1 .00
Choice .251“ 1.00
Social Support .367" .1 15 1.00
Social Role .424" .205“ .196“ 1.00

 

* Correlation is significant at the 0.05 level (1 tailed)
** Correlation is significant at the 0.01 level (ltailed)

70

Scores on Mea_§y_res by Agency Pram

There were four measures used as components of the Community Inclusion
Score: Community Activity and Participation Checklist (community integration), Social
Role Checklist (social role), Social Supports Self-Report (social support), and Choice
Questionnaire (choice). Table 7 compares means scores on the measures by the two
agency programs. T-tests yielded statistically significant differences for the measures of
community integration, choice, and the total of all community inclusion measures. In
each case the mean score for Vocational Services was higher than the means score for
Transitions. While differences were not significant for social support (p=.05 8) and social
role (p=.093), the p values require consideration before completely dismissing the
differences.
Communitv Irmfion

Scores on the Community Activity and Participation Checklist ranged from 0 to
24. Overall, participant total scores on the Checklist yielded a mean score of 8.89 with a
standard deviation of 4.72. Total scores yielded skewness and kurtosis statistics of .453
and .000 respectively. After a visual examination of the distribution using a histogram, a
normal distribution is assumed

Table 8 presents the percentage of “yes” and “no” responses to each of the items
on the checklist categorized by Agency Vocational/Day Programs and the test of
significance for each item. The community activities with the highest frequency were
visits to a grocery store, department store, or fast food restaurant. The community
locations that were least visited were a bar, hotel, or museum. The least participated in

activities were visits to a bar, hotel, or museum, or participation in a league or team.

71

Activities that were named as “other” activities included work, bingo, fishing, collector’s
meetings, camping, library, vacation, walking, Special Olympics, hunting, visit a friend,
joy rides in the car, golfing, arts and craft club, rollerblading, dances, bike riding, and
dance class.
Social Role

Scores on the Social Role Checklist ranged from 0 to 8, with a mean score of 3
with a standard deviation of 1.72. The skewness statistics was .799 while the kurtosis
statistic was .298. A visual examination of the scores using a histogram indicated that a
one third (32.5%) of participants indicated holding two social roles. Despite this, there
appears to be a normal distribution of scores. Table 9 indicates the frequency of “yes”
and “no” responses for each of the social roles categorized by the agency program. The
most frequently reported social roles were fiiend and church member. The least frequent
social roles were parent and club member. The only apparent difference in roles between
the two groups was in the role of volunteer. Seventeen (30.4%) people from Vocational
Services reported being a volunteer while only nine (12.9%) from Transitions reported
having such a role. There was only one role, church member, that participants from
Transitions reported a higher percentage of the time.
Social Supmrt

The Social Supports Self-Report had a range of 16 to 135. The mean total score
was 71.25 with a standard deviation of 26.4. The skewness statistic of the distribution
was .069. The kurtosis statistic of the distribution was -.433. Using these statistics,
normal distribution can be assumed. A visual examination using a histogram supported

this assumption. Table 10 indicates the total mean and standard deviation for each

72

Table 7

Comparison of Participant Mean Scores on Measures of Community Inclusion by

 

 

 

Agency Program
N Mean SD Test of
Significance

Community Activity and Participation Checklist

Vocational Services 55 10.02 4.72

Transitions 70 7.67 4.56 t=2.96**
Social Role Checklist

Vocational Services 55 3.29 1.86

Transitions 69 2.77 1.57 t—=1 .69
Social Support Self-Report

Vocational Services 55 75.75 26.83

Transitions 54 66.17 25.29 F192
Choice Questionnaire

Vocational Services 55 25.40 7.28

Transitions 65 16.70 5.54 t=7.42***
Community Inclusion Total

Vocational Services 55 114.60 30.19

Transitions 53 93.44 30.36 t=3.67***
Consumer Satisfaction Survey

Vocational Services 55 12.93 2.52

Transitions 62 13.21 2.25 t=-.640
’p<.05
**p<.01
"*p<.001

73

Table 8
Comparison of Frequency of “Yes” Responses for Items on the Community Activity and

Participation Checklist by Agency Program

 

 

 

Grouping
Voc Services (n=56) Transitions (n=70)
Frequency 1%) Frequency (%)
Grocery Store 43 (76.8%) 53 (75.7%)
Department Store 41 (73.2%) 50 (71.4%)
Movie Theater 18 (32.1%) 29 (41.4%)

Rented a Movie

Fast Food Restaurant
Sit Down Restaurant
Hotel

Exercise Facility
Park

Mall

Bar or Dance Club
Ice Cream Shop
Overnight at a Friends
Church or Synagogue
Volunteered

Bowling Alley

31 (55.4%)
45 (30.4%)
41 (73.2%)
10 (17.9%)
13 (23.2%)
25 (44.6%)
33 (67.9%)

s (14.3%)
23 (41.1%)
19 (33.9%)
31 (55.4%)
15 (26.8%)

34 (60.7%)

28 (40.0%)
53 (75.7%)
30 (42.9%)
7 (10.0%)
15 (21.4%)
29 (41.4%)
43 (61.4%)
5 (7.1%)
20 (28.6%)
14 (20.0%)
44 (62.9%)
18 (25.7%)

36 (51.4%)

 

74

Table 8 (Cont’d)

 

 

 

Grouping
Voc Services (n=56) Transitions (n=70)
Frequency (%) Frequency (%)
Pool Hall 13 (23.2%) 9 (12.9%)
Museum 13 (23.2%) 1 (1.4%)
Concert, Play, or Musical 17 (30.4%) 10 (14.3%)
Participated in a League 12 (21.4%) 4 (5.7%)
Participated on a Team 10 (17.9%) 2 (2.9%)
Attended a Sporting Event 14 (25.0%) 11 (15.7%)
Support Group 11 (19.6%) 14 (20.0%)
Other 25 (44.6%) 9 (12.9%)
Other 11 (19.6%) 1 (1.4%)

 

75

Table 9
Comparison of Frequency of _“Yes” Responses for Items on the Social Role Checklist by

Agency Program

 

Grouping
Item Voc Services (n=55) Trjansition_s Q1=7O)
(Social Role)

Frequency (%1 Frequency (%1

Someone’s Friend
Church Member

Club Member
Advocacy Group
Support Group Member

Husband/Wife
Boyfiiend/ Girlfriend

Parent
Helped Someone
Volunteer

Other Roles

48 (85.7%)
30 (53.6%)
4 (7.1%)
9 (16.1%)
17 (30.4%)

22 (39.3%)

2 (3.6%)
26 (46.4%)
17 (30.4%)

4 (7.1%)

61 (87.1%)
45 (64.3%)
3 (4.3%)
3 (4.3%)
15 (21.4%)

27 (38.6%)

1 (1.4%)
25 (35.7%)
9 (12.9%)

1 (1.4%)

 

76

Table 10

Comparison of Means Scores for Items on the Social Supports Self-Report by Agency

 

 

 

Program
Grouping

Item Voc Services (n=55) Transitiop§jp=54)
(Person) Mean SD Mean SD
Total Support 76.35 26.70 66.16 25.30
Spouse/Sweetheart 4.79 5.89 4.58 5.87
Mother 7.94 6.09 6.21 6.24
Father 6.5 6.14 4.56 5.56
Brothers 7.46 5.13 6.76 5.18
Sisters 6.89 5.77 7.26 5.56
Aunts 4.0 5.48 .91 2.66
Uncles 2.76 4.34 .83 2.43
Grandparents 2.54 4.32 .49 2.06
Roommates 4.02 5.34 5.11 5.71
Staff 7.52 5.93 11.09 4.03
Work Friends 7.33 5.43 8.06 5.43
Best Friend 8.96 5.48 8.15 6.42
Other 5.27 6.18 3.16 5.54

 

77

possible supportive person in the participants’ life by agency program. The mean scores
for almost all of the listed people are very close between the groups.
Emacs

The scores on the Choice Questionnaire had a range of 10 to 36. The mean was
20.7 with a standard deviation of 7.7. The distribution skewness was .525 and the
kurtosis was -1.086. While a normal distribution can be assumed using these statistics, a
visual examination using a histogram highlighted the kurtosis score with the cluster of
scores indicating reports of lower amount of choice.

Table 11 indicates the frequency of responses for each item by each agency
program. For each item the reported level of choice was higher for participants from
Vocational Services. The only item that over 50% of participants from Vocational
Services reported making no choices was in determining how money is spent. On the
other hand, participants from Transitions reported very few opportunities to make
choices. The only item that less than 50% reported no choice being use of the telephone
and that was primarily allowed after asking.

Qualig of Life
Subjective Quality of Life

The mean score on the Consumer Satisfaction Survey was 13.08 with a range
from 5 to 15, and a standard deviation of 2.37. A t-test between the score of the two
agency groups indicated that there were no significant differences at the p<.05 level.
Table 12 indicates the frequency of responses to questions regarding happiness with life
situations. Table 13 indicates preferences regarding living, working, and friendship. The

highest percentage of participants from both agency programs indicated that their

78

Table 11

Comparison of Frequency of Responses for Items on the Choice Questionnaire by

 

 

 

Agency Program
Grouping
Item Voc Services (n=55) Transitions (n=65)
Frequency 1%) Frequency (%)

Bedtime

I decide 32 (58.2%) 14 (21.5%)

I decide with help 0 (0.0%) 1 (1.6%)

Others Decide 23 (41.8%) 50 (76.9%)
Chores

I decide 21 (38.2%) 8 (12.3%)

I decide with help 9 (16.4%) 2 (3.1%)

Others Decide 25 (45.5%) 55 (84.6%)
Drink or Eat

When I want 38 (69.1%) 13 (20.0%)

If] ask 8 (14.5%) 15 (23.1%)

At set times 9 (16.4%) 37 (56.9%)
Telephone

When I want 27 (49.1%) 9 (13.8%)

If I ask 19 (34.5%) 26 (40.0%)

Never or on schedule 9 (16.4%) 30 (46.2%)
Pet

No restriction/I decide 25 (45.4%) 7 (10.8%)

I’d have to ask 14 (25.5%) 9 (13.8%)

Others Decide 16 (29.0%) 49 (75.4%)
House Alone

No rules 32 (58.2%) 7 (10.8%)

Sometimes 7 (12.7%) 8 (12.3%)

Never 16 (29.1%) 50 (76.9%)

 

79

Table 1 1 Cont’d

 

Grouping
Item Voc Services (n=55) Transitions (n=65)
Frequency (%) F requeng (%)

Money
I decide
I decide with help
Others Decide

Drink Beer or Wine
I decide
I decide with help
Others Decide

Out Anywhere
I can go anywhere
I ask
I am stopped or I go
with someone

Home Late
IfI want
I decide with help
Others Decide

Off Work
I decide
I decide with help
Others Decide

Overall
Yes
Sometimes
Others Decide

12 (21.8%)
13 (23.6%)
30 (54.5%)

28 (50.9%)
11 (20.0%)
16 (29.1%)

18 (32.7%)
20 (36.4%)
17 (30.9%)

16 (29.1%)
26 (47.3%)
13 (23.6%)

17 (30.9%)
26 (47.3%)
12 (21.8%)

20 (36.4%)
20 (36.4%)
15 (27.2%)

4 (6.2%)
6 (9.2%)
55 (84.6%)

18 (27.7%)
9 (13.8%)
38 (58.5%)

5 (7.7%)
9 (13.8%)
51 (78.5%)

3 (4.6%)

12 (18.5%)
50 (76.9%)

3 (4.6%)

15 (23.1%)
47 (72.3%)

4 (6.2%)

11 (16.9%)
50 (76.9%)

 

80

preference for living and working would be to remain were they currently were. One
striking difference found was that 20% participants from Vocation Services indicated that
they would rather live and/or work in a specific setting that was not listed. As for
friendships, only two participants from each group indicated a desire for fewer friends.
All others indicated that they would like the same number or more friends.
Obiective (Alality of Life

_AQaptive behavior. Adaptive behavior was measured using the Inventory for
Client and Agency Planning (ICAP). There were only 28 (50.0%) ICAP scores available
fOr the participants from Vocational Services and 58 (82.9%) ICAP score for people in
Transitions. There were 40 total scores missing. The agency residential staff completes
the ICAP. Therefore, if the agency did not provide residential services for the participant
there would be not ICAP in the case file. There were two reasons given by the agency for
case files not having completed ICAPs. First, there were group homes that do not
complete the ICAP because they are contracted to provide residential services to the
participants rather homes run by the agency. These homes have their own case managers.
There were seven Vocational Services participants and ten Transitions participants living
in one of these group homes that did not have ICAP scores. Second, there were nine
Vocational Services participants who lived independently and were not in need of agency
residential services. Of the completed ICAPs the mean score for Vocational Services was
40.2 and Transitions 45.1. The t-test found that the differences were statistically different

(t=-.244, p<.01). Table 14 presents the comparison of ICAP mean scores by agency

program.

81

Social Indicators. Demographics variables were reported by agency programs in
Table 3. The social indicators that were reported in that table were residential setting,
level of paid support in home, paid support in work/day activity, health status, income,
use of physical aids, and use of behavioral treatment plan. Significant differences
between Vocational Services and Transitions were found in residential setting, level of
paid support in home, level of paid support in work/day activity, and expressive
communication.
Relationship Between Community lncluairflnd Subjective Quality of Life

Prior to performing the statistical analysis to determine the relationship between
community inclusion and subjective quality of life, z scores were computed for the scores
of the measure of life satisfaction, the four measures of the components of community
inclusion, and the total score of community inclusion. A Pearson correlation between the
total score for community inclusion and life satisfaction provided a slightly positive
coefficient (r=.245) that was found to be significant at the .05 level. Cases were excluded
pairwise. Table 15 presents the relationship between life satisfaction and the total score
for community inclusion and the four components proposed to make up community
inclusion. There was as a positive correlation between Life Satisfaction and the two
components community integration (.385, p<.001) and social support (.203, p<.05).
There was a slight correlation between life satisfaction and choice (.164, p<.05) although
the correlation did not reach the .05 level of significance. The correlation coefficient
indicating relationship between life satisfaction and social role did not reach the .05 level

of significance.

82

To assess the collective impact of the components of community inclusion on life
satisfaction, the z scores for the four variables, community integration, social role, social
support, and choice were entered into a step-wise multiple regression procedure. The
results are listed in Table 16. Community Integration was the only variable included in
the final model. At the completion of the procedure the P value for the procedure was
18.39, p<.001, and the associated r =.385 and r2 = .148.

Relationship Between Community Inclu_sion and Obiective Quality of Life

Prior to performing the statistical analysis to determine the relationship between
community inclusion and objective quality of life, 2 scores were computed for the scores
of the measure of adaptive behavior (ICAP), the four measures of the components of
community inclusion, and the total score of community inclusion. A Pearson correlation
analysis between adaptive behavior as measured by the ICAP and community inclusion
provided a slightly positive coefficient (r=.285) that was found to be significant at the .05
level. Table 15 presents the relationship between ICAP scores and the four components
of community inclusion. ICAP scores were positively correlated with choice (.469,
p<.01) and social role (.248, p<.05). Other components were not found to have
coefficients that are statistically significant.

To ascertain the relationship between community inclusion and social indicators,
a stepwise multiple regression analysis was performed The social indicators initially
identified were residential setting, work/day activity, level of paid support in work/day
activity, level of paid support in home, health status, receptive communication,
expressive communication, income, use of physical aids and use of behavioral treatment

plan.

83

After considering the distributions of the variables and the correlation coefficients
among them, it was determined that some predictors would not be put on the equation.
Level of paid support in both home was highly correlated with the dummy variable
residence (.835, p< .01). Level of paid support in work/day activity was highly correlated
with work/day activity program (.705, p< .01). Given the likelihood that there would be
collinearity between these variables in a regression equation, both levels of paid support
were eliminated. Health status, receptive communication, and income were also
eliminated from being predictors in the equation because they had very little variation
among the whole sample. Health status was reported to be “good” by 86.5% of the
sample. There were only three participants that did not understand verbal
communication. Income had only two participants that had an income level other than
“low”. This left residential setting, work/day activity, expressive communication, use of
physical aids, and use of behavior treatment plan. Dummy variables were created for
residential setting and expressive communication.

The stepwise multiple regression indicated that the best single predictor of
community inclusion was vocational/day program. The best combined predictors of
community inclusion were vocational/day program and use of physical aids. After
completion of this analysis for final equation including both predictors had an F value of
10.099, p<.001. The associated multiple r and I“ were .398 and .159. Table 17 presents

the coefficients of the regression equations.

Table 12

Comparison of Level of Satisfaction for Items on the Consumer Satisfaction Survey by

 

 

 

Agency Program
Grouping
Item Voc Services (n=55) Transitions (n=62)
Frequency (%) Frequency (%)

Life in General (Q1)

Happy 42 (76.3%) 51 (78.4%)

Okay 8 (14.6%) 8 (12.3%)

Unhappy 5 (9.1%) 3 (4.6%)
Where you Live (Q2)

Happy 32 (58.2%) 44 (71.0%)

Okay 13 (23.6%) 14 (22.6%)

Unhappy 10 (18.2%) 4 (6.4%)
Spend your Day (Q4)

Happy 42 (76.3%) 44 (71.0%)

Okay 9 (16.2%) 15 (24.2%)

Unhappy 3 (5.5%) 3 (4.8%)
Free Time (Q6)

Happy 37 (67.4%) 43 (69.4%)

Okay 12 (21.8%) 14 (22.6%)

Unhappy 5 (9.1%) 5 (8.0%)
Current Friendships (Q8)

Happy 39 (70.9%) 43 (69.4%)

Okay 13 (23.6%) 10 (16.1%)

Unhappy 3 (5.5%) 9 (14.5%)
Happy Overall (Q10)

Yes 51 (92.7%) 56 (90.3%)

No 4 (7.3%) 6 (9.7%)

 

85

Table 13

Frequency of Responses for Preference Items on the Consumer Satisfaction Survey by

 

 

 

Agency Program
Grouping
Item Voc Services Traflitions
Frequency (%) Frequency (%)
Where would you like to live?
n= 55 n=58
Where I am now 21 (38.2%) 36 (62.1%)
By myself 8 (14.6%) 6 (10.4%)
Alone with help 7 (12.7%) 3 (5.1%)
With fiiends 3 (5.5%) 2 (3.6%)
With family 4 (7.2%) 3 (5.1%)
In a group or foster home 1 (1.8%) 3 (5.1%)
Other 1 1 (20.0%) 5 (8.6%)
Where would you like to (work) spend your day?
n= 55 n=55
What I am doing now 28 (50.9%) 27 (49.1%)
I don’t want to work 1 (1.8%) 3 (5.5%)
Work with job coach 9 (16.4%) 14 (25.5%)
Work with no coach 1 (1.8%) 2 (3.6%)
Volunteer 2 (3.6%) 2 (3.6%)
Work at home 3 (5.5%) 1 (1.8%)
Other 1 1 (20.0%) 6 (10.9%)
How many friends do you want?
n= 55 n=54
More Friends 26 (47.3%) 28 (51.9%)
Same Friends 27 (49.1%) 24 (44.4%)
Less Friends 2 (3.6%) 2 (3.7%)

 

86

Table 14

Comparison of Participants on Mean ICAP Score by Agency Programs (n=86)

 

 

 

 

 

 

Grouping Test of
Voc Services Transition_s Significance
MEAN SD N MEAN SD N
ICAP Score 70.32 10.76 28 54.20 12.6 58 T=5.814*
*p<.001
Table 15

Relationship of Life Satisfaction and Adaptive Behavior with Community Inclusion

 

 

Consumer Satisfaction ICAP
Survey
Community Inclusion Total .245“ .285“
Community Activity and .336“ .142
Participation Checklist
Social Support 203* .157
Self-Report
Social Role Checklist .037 248*
Choice Questionnaire .072 .469"

 

“ Correlation is significant at the 0.05 level (l-tailed).
** Correlation is significant at the 0.01 level (l-tailed).

87

Table 16
Summary Step-wise Regression Analysis for Variables Predicting

Subjective Quality of Life (n=108)

 

 

 

Variable B SE B
Step 1
Community Integration .205 .048 385*“
R2 = .148
***p<.001
Table 17

Summary Step-wise Regression Analysis for Social Indicators

and Community Inclusion (n=108)

 

 

Variable B SE 8
Step 1

Work/Day Activity 21.200 5.773 385*"
Step 2

Work/Day Activity 20.946 5.643 3.29":

Use of Physical Aids 13.996 5.677 .219“

 

Model 1R2=.111
Model I R2= .159
***p<.001

*p<.05

88

Chapter V
DISCUSSION

In this chapter, findings from the four research questions investigated are
summarized and interpreted. Implications and limitations of the findings are discussed
along with observations regarding future directions for research in this area of inquiry.

The purpose of this study was to define and measure community inclusion using
four components: (a) community integration, (b) social role, (c) support, and ((1) choice.
First, the measures were examined for adequate reliability by determining the internal
consistency of the measures. Second, the relationships between the four measures were
determined using Pearson correlation coefficients. Third, the relationship between
community inclusion and quality of life, both subjective (life satisfaction) and objective
(adaptive behavior and social indicators), were examined. Finally, scores on measures of
community inclusion were examined for difference between people in different agency
programs (Vocational Services and Transitions).

Findings

The methodology used to address these questions was the administration of
measures of community inclusion, life satisfaction, and demographic information to
consumers with mental retardation at a community mental health agency in Michigan.
There were eighteen people who did not complete the entire interview process. One
person elected to stop the interview, the main reason for not completing the interview
was the inability to either understand or answer the question(s). It is interesting to note
the characteristics related to the participants that did not complete the entire interview.
The one person that elected to stop the interview was a Vocational Services’ participant,

89

while all of the other volunteers that did not complete the interview were from the
Transition group.
Research Question One

The first research question asked whether the measures of components of
community inclusion are reliable. The hypothesis for this question was that the measures
for each of the four components of community inclusion (community integration, social
support, social role and choice) would be internally consistent.

To identify the reliability of the four measures, Cronbach alphas were examined
to determine internal consistency. These alphas indicated that the Community Activity
and Participation Checklist (.82), the Social Support Self-Report (.87), and the Choice
Questionnaire (.94) yielded adequate reliability. The Social Role Checklist yielded an
alpha (.57) that is typically considered insufficient.

The alphas for the measures of community integration (Community Activity and
Participation Checklist), social support (Social Support Self-Report), and choice (Choice
Questionnaire) suggest that the measures are internally consistent therein supporting the
hypothesis. The alpha of the measure of social role (Social Role Checklist) indicated that
this measure is not sufficient and may not be considered internally consistent and
subsequently does not support the hypothesis. There are possible reasons that the alpha
for the measure for social role was this low. The mean score for the measure among the
entire sample was three, which appears low considering the possible range. Also, a
visual examination of the scores using a histogram indicated that a one third (32.5%) of
participants indicated holding only two social roles. This may indicate that there were

not enough items listed on the measure. It may also indicate that there are roles that were

90

not listed that should Imve been such as worker, roommate, or neighbor. Despite this
insufficient alpha, according to Heppner, et a1. (1992), the yielded alpha does not
completely limit the utility of the measure.

Research Question Two

The second research question asked if there was a relationship between proposed
components of community inclusion: community integration, social role, social support,
and choice. The hypothesis for this question was that there would be a statistically
significant positive relationship between proposed components of community inclusion:
community integration, social role, social support, and choice.

Prior to performing statistical analyses that assess a relationship, 2 scores were
computed for the four components of community inclusion. A Pearson correlation
analysis was performed using the z scores of these four components. This analysis
indicated statistically significant correlation coefficients between community integration
and the other three components: social support (.367, p<.01), social role (.364, p<.01),
and choice (.251, p<.01). Statistically significant correlation coefficients were also found
between: social role and choice (.205, p<.05) and social role and social support (.196,
p<.05). There was no statistically significant correlau'on found between choice and
social support (.1 15).

The statistically significant correlation coefficients between five of the six
possible combinations of components support the hypothesis that there is a relationship.
The statistically significant relationships between these constructs support the multi-
component conceptualization of community inclusion. The coefficients of the

relationships indieate adequate strength while also supporting the independence of each

91

component. The acceptance of this hypothesis is done with caution given the lack of a
statistically significant relationship between choice and social support.
Reseaih Question Three

The third research question asked whether there is a relationship between
community inclusion and quality of life. The hypothesis for this question was that there
would be a statistically significant positive relationship between community inclusion
and quality of life. Measures of quality of life for this study were subjective and
objective. Subjective quality of life was defined as life satisfaction and measured as
such. Objective quality of life was defined as adaptive behavior and social indicators and
was measured using data found in participant case file or provided by agency staff.

Subjective Quality of Life. Prior to discussing the relationship between
community inclusion and life satisfaction it is important to first discuss the measure of
life satisfaction developed for this study. The mean score on the Consumer Satisfaction
Survey measuring subjective quality of life (life satisfaction) was 13.08 with a range from
5 to 15. The internal consistency for the measure as reported by Cronbach’s alpha is .76,
which is adequate according to Heppner, et a1. (1992). An analysis of the responses to
each item regarding life satisfaction indicates that there were no significant differences
between the participants of the two agency programs. There was also no notable
difference on preferences between the participants of the two agency programs. Less
than 10% of the respondents indicated that they are unhappy about their life in general,
how they spend their day, how they spend their free time, and their current friendships.
Participants from Transitions indicated that they are 71% are happy and 24.2% are okay

with where they spend their day. Despite an indication of relevant satisfaction, when

92

asked for preferences, approximately 50% of the respondents indicated a desire for
change in the way they spend their day and the number friends that they have. The
foundational purposes of community services’ programs assume that living, working, and
recreating in the community lead to greater life satisfaction. The above findings do not
necessarily concur with these assumptions given that there was no significant difference
between the groups.

The only notable difference in life satisfaction items was regarding where the
individual lives. Of the Vocational Services participants, 58.2% reported being happy
with their living situation in comparison to the 71% of Transitions participants that
reported being happy. There was an indication of unhappiness (18.2%) that came from
Vocational Services participants on where they live in comparison to only 6.4% of
Transitions participant reporting unhappiness. Supporting this, only 38.2% of the
Vocational Services participants stated their living preference is where they are living
now. Nine (16.3%) participants indicated a desire to own their own home. Another 15
(27.3%) people indicated a desire to live on their own, either with or without support.

These findings seem to differ from previous research. Hamer and Heal (1993), in
research assessing psychometric properties of the Multifaceted Lifestyle Satisfaction
Scale, concluded that individuals living in less restrictive environments were significantly
more satisfied than individuals in more restrictive environments. Another study assessing
quality of life and social integration among people from one of three residential settings,
family home, group home or supported apartment (Burchard, Rosen, Gordon, Hasazi,
Yoe, & Dietzel, 1992). Buchard, et a1. (1992) found that persons living in group-homes

reported being more dissatisfied with their residence and less happy than residents in the

93

other two settings. No research related to satisfaction and vocational/day program
services was found. Therefore, to explore this further an analysis of variance was
conducted using the participant’s residences. This analysis indicated that there was no
significant difference. These mean satisfaction scores by residences were: family home
13.81 , independent home 12.67, and group home 12.84. This again does not concur
with the above cited research.

In considering the third research question, a correlation was found to be
statistically significant between the sum score of community inclusion and subjective
quality of life (life satisfaction) (.245, p< .05). There were also analyses that considered
the relationships among the four proposed components of community inclusion to life
satisfaction. There were statistically significant relationships found between subjective
quality of life and both community integration (.336, p<.01), and social support (.203,
p,.05). The weak relationships between life satisfaction and both choice and social role
were not found to be statistically significant.

A step-wise regression procedure using all four components indicated that
community integration as the only predictor variable for life satisfaction. As Storey
(1993) stated, [community] integration is the necessary first step, the introduction to other
forms of integration (social integration and relationships). Given that community
integration has been the focus of services in the last two decades, the relationship to life
satisfaction seems reasonable. The failure of the other three variables to significantly
predict life satisfaction is important to consider given their importance in the

operationalization of the concept of community inclusion.

Objective Oglity of Life. A Pearson correlation analysis indicated that there was
a significant relationship between adaptive behavior as measured on the ICAP and
community inclusion, the total of the four components. The ICAP was also positively
correlated with the measures of choice and social role. These findings are supported by
previous research. Stancliffe’s (1997) findings suggest that period of time without staff
present allows for the opportunity to make more choices. Therefore given that higher
scores on the ICAP indicate a lower need for staff supervision it may also indicate that
opportunity for choice-making would then be greater. Similarly, Wehmeyer and Metzler
(1995) found that people with mental retardation are often perceived as not capable of
assuming adult roles and therefore considered not capable of making choices impacting
their lives. They also found that the perception of consumer’s capabilities impact the
opportunities they are given to make choices.

Participants from Vocational Services have higher ICAP scores, less paid support,
more social roles, and more opportunity for choice. Participants from Transitions
indicated lower ICAP scores, greater paid support, fewer social roles, and lower
opportunity for choice-making.

A step-wise multiple regression procedure was used to identify the relationship
between community inclusion and social indicators. The criterion variable was
community inclusion and predictors entered into the analysis were residential setting,
vocational/day activity, expressive communication, use of physical aids, and use of
behavior treatment plan. The best combination of predictors included vocational/day

program and us of physical aids. While these predictors were not necessarily anticipated

95

they are also not surprising. What was somewhat surprising was the lack of inclusion of
the other three variables that were anticipated as predictors.

The above findings regarding the relationship between community inclusion and
quality of life are not clearly in support of accepting the hypothesis.
Resgarch Question Four

The final research question asked whether there are differences in scores on
measures of community inclusion between the two agency programs, Vocational Services
and Transitions. The hypothesis for this question was that participants from Vocational
Services would have statistically significant higher scores on measures of community
inclusion than participants from Transitions. In order to assert that any differences on
measures are meaningful, it was first necessary to determine that these were actually two
significantly different groups.
Demoggrphic Differences

The consumers participating in this study were receiving services through at least
one of two vocational/day programs, Vocational Services or Transitions. There were 15
participants who were found to be consumers of both services. After lengthy
consideration, a decision was made to include the 15 with the VOcational Services
consumers rather than as a separate group or as members of the Transitions group. This
decision was based on the actual services each program provides. Given that people in
vocational services have various activities throughout their day that may not be work
related or supervised by vocational services staff it was determined that going to a

Transitions’ site could be considered one of these other activities.

96

The demographic differences between Vocational Services and Transitions
participants, found to be statistically significant, were residential setting, paid support in
home, paid support in vocational services/day program, expressive communication,
behavior plan use, mean age, and mean ICAP score. When comparing the participants
from each program given various demographic variables, differences that were found to
be significant were typically ones that were anticipated. For example, participants from
Transitions received a much higher number of hours of paid support in day activities in
fact no Transitions participant was reported to not receive paid support and the majority
of participants were reported receiving full-time support.

Another anticipated finding pertains to residential setting and subsequently the
amount of paid support the participant receives in the home. A statistically significant
number of participants from vocational services reported living more independently and
receiving a significantly lower number of support hours. On the other hand, participants
from Transitions were either living in a group home or family home, with only one
participant living independently. The majority of participants from Transitions living at
group homes received around the clock support although there were some Transitions
participants who did not need firll-time paid support, especially when sleeping.

Participants who communicated using a symbol board or gestures, noises or
pictures were all from Transitions. Participants fiom Vocational Services could typically
express themselves well using complete sentences. Transitions had four times as many
participants who were utilizing behavior plans. There was also a significant difference
found in relation to age. The mean age of participants in Transitions was 4.9 years

higher than the mean age of participants in Vocational Services.

97

There was also a significant difference in mean ICAP scores between the two
programs. This difference is also reasonable in that it would be expected that people with
higher levels of adaptive behavior would be living and working in more independent
situations. Therefore, the significantly higher scores of participants from Vocational
Services are understandable. Even though these results may be expected it must also be
noted that these scores were for only 68.3% of the total participants and only 50% of the
participants from Vocational Services. While this does present a limitation in
commenting on the sample, at least one of the reasons for the missing scores is in line
with the results. The reason given for nine missing scores is that the individual is living
independently and there was no need for residential services, residential services being
the department that completes the consumer’s ICAP. Therefore, it seems reasonable to
assume that missing scores are from people in vocational services, living independently.
Since the ICAP is designed to measure service needs (Bruinicks, et al., 1986) and these
individuals have no service needs, it is assumed that these ICAP would be high, and
possibly higher than the ones obtained

The statistical differences between the two groups on demographic variables are
important to consider in relationship to the findings of the research questions discussed
below. These differences indicate the distinctness of the Vocational Services and
Transitions participants. The differences support the anticipation of differences of scores
on measures of community inclusion and subjective quality of life. In part, these
differences, if found on the various measures, would provide some initial evidence

regarding the validity of the measures developed for this study.

98

Commu_nity Integgtion

Scores on the Community Activity and Participation Checklist, the measure of
community integration, indicated that there was significant difference between the
Vocational Services and Transitions groups with the Vocational Services group
indicating a higher number of community activities (t=2.96, p<.01).

There were several activities with noted differences between the groups. These
activities included eating at a sit-down restaurant, visiting a museum, attending a concert
or play, participating on a team, or participating in a league. With these activities, there
were more participants from Vocational Services than from Transitions. Another notable
difference in the reported activities on this measure was that people from Vocational
Services reported participating in activities that were not listed. These consumers
reported one or two other activities that they engage in on a regular basis. These
activities included work, bingo, fishing, collector’s meetings, camping, library, vacation,
walking, Special Olympics, hunting, visit a friend, joy rides in the car, golfing, arts and
crafts club, rollerblading, dances, bike riding, and dance class.

Given that participants from Vocational Services tend to Inve higher levels of
adaptive behavior, greater independence, less need for paid support, and adequate
expressive communication, the statistically significantly higher score from Vocational
Services were expected.

Sgial Role

Scores on the Social Role Checklist indicated that participants from Vocatiorml

Services held a higher number of social roles (t=1.69, p<.10). Another difference

between the groups was noted when participants were asked follow-up questions related

99

to each role. For example when asked what they did as a friend, there were some
differences in responses between the groups. The Vocational Services participants were
able to identify more sophisticated actions that they do as friends such as talk on the
telephone, meet for coffee or dinner, or help each other with problems. The Transitions
participants tended to state that, as a friend they would sit next to the individual at break
or talk to a friend at lunch. Another similar example of these differences came in the
responses to a follow-up question asking what the person does as a church member.
Twenty-two of the participants from Vocational Services who reported being members of
a church reported at least one activity related to this role such as setting up before or
cleaning up after services or socials, serving as a greeter before services, taking up the
collection, or serving on a committee. Not one of the participants from Transitions who
responded positively to being a church member reported such activity. All such
responses were either pray or singing. While there could be a philosophical argument to
the value to the individual of the various tasks reported as church members, the
distinction between the two is clear.

Holding various social roles is common in our society. Wehmeyer and Metzler
(1995), in a national survey on self-determination, found that in general “people with
mental retardation are not assuming roles or engaging in activities that serve to define the
individual as an adult.” (p. 118) Similar to their findings, few consumers were assuming
the role of spouse or parent. Wehmeyer and Metzler (1995) also note that very few
consumers are homeowners. Although it was not specifically asked in the interview for
this research, the researcher noted that there were no homeowners although several

consumers fiom vocational services stated that they would like to be during the interview.

100

 

Social Suppprt

Scores on the Social Supports Self-Report indicated that there was a significant
difference between the two agency groups on the total support score (t=1.92, p<. 10).
Participants from Vocational Services had a higher overall mean score. When
considering the mean score for each item on the measure it appears that there is not much
difference in support from immediate family and friends. There does appear to be a
difference between the scores for extended family, aunts, uncles, and grandparents, with
participants from Vocational Services having higher scores. Support from staff was the
only item with a notable difference that participants from Transitions reported to be
higher than for participants from Vocational Services. This was anticipated given
demographic data indicated that more than 50% of participants from Vocational Services
received no paid support and those that did receive support typically received a limited
number of paid support hours. Alternatively, approximately 50% of the participants from
Transitions received full time paid support. Scores indicate the participants experience
strong reliance on and support from staff

An interesting difference to note is that the participants from Transitions reported
a slightly higher level of support from work friends. In their review of social support
research, Newton, Homer, Ard, LeBaron, and Sappington (1994) stated that most people
with mental retardation rely on family, staff, or other consumers for support. Given this
finding, the consumer living independently without roommates or paid staff, may

experience loneliness and isolation, despite living and working in the community.

101

9.11.1364:

The scores on the Choice Questionnaire had a range of 10 to 36. The mean was
20.69 with a standard deviation of 7 .71. The mean scores on the measures indicated
significant differences between the two groups (t=7.42, p<.001). Also when examining
each question, the participants from Vocational Services had higher scores than
participants from Transitions. Transitions’ participants reported very few opportunities
for choice-making and many instances indicated that a many were given no choices at all.
Therefore, it is concluded that people in Vocational Services are given more opportunity
to make choices in their day to day life. Specifically, this research identifies the lack of
opportunity for choice-making among individuals in a workshop setting although the lack
of choice-making appears to be related to residential situation. Given that many of the
questions on the Choice Questionnaire are related to home activities, an analysis was
performed to determine if there are differences in choice making between the three
residential settings, family home, independent home or group home. To explain this
further, a one-way analysis of variance was conducted. The analysis indicated that there
is a significant difference, F=57.63, p<.001, with the mean choice scores for participants
being: independent home 29.48, family home 24.42, and group home 16.03. Therefore,
people living in group homes are also given less opportunity to make choices in their
daily life activities.

Stancliffe (1997), using the Choice Questionnaire from which questions on this
study where drawn, also found that size of residence is related to choice. His findings

suggest that period of time without staff present allows for the opportunity to make more

102

choices. Therefore the less time a person has paid support the greater the opportunity for
choice. This concurs with findings in this study.

Wehmeyer and Metzler (1995) found that people with mental retardation have
fewer choices and less control people without disabilities. School home and work
environments that are structured and overprotective do not support opportunities for
consumers to make meaningful choices. They also found that the perception of
consumer’s capabilities impact the opportunities they are given to make choices. In
summary, Wehmeyer and Metzler (1995) found that people with mental retardation are
often perceived as not capable of assuming adult roles and therefore considered not
capable of making choices impacting their lives.

While there was no research found to indicate differences as a result of the
consumer living in a family home. This is assumed to be determined as well by the
structure of the environment, the level of protection provided by the family, and the
perception the family has with regard to the capabilities of the person with mental
retardation.

Summag of Finding;

The results of this study indicate some strengths and weaknesses in the
operationalization and measurement of community inclusion. In response to hypothesis
one, the alpha level for the measures of community integration (Community Activity and
Participation Checklist), social support (Social Support Self-Report) and choice (Choice
Questionnaire) all indicated adequate internal consistency. The corresponding alpha for
the measure of social role (Social Role Checklist) could be considered insufficient, but

given that this is the first use of the measure created for this study, its utility should not

103

be totally disregarded, although further work on instrumentation appears necessary.
Therefore this hypothesis will be accepted with caution.

Examining hypothesis two, there were several statistically significant
relationships found between the four measures of community inclusion. Every
relationship between two components was found to be statistically significant except for
the relationship between choice and social support. There is no explanation for the lack
of significant relationship between these two components. While this does not support
the hypothesis, it does not necessarily prevent acceptance of this hypothesis. Choice has
a statistically significant relationship with both community integration and social role.
Social support has a statistically significant relationship with social role and an even
stronger relationship with community inclusion. Given the strength of all other
relationships this hypothesis is accepted while noting the lack of relationship between
choice and social support. This supports the conceptualization of the construct
community inclusion in that the statistically significant coefficients indicate relationships
between the components. The relative strength of the correlation coefficients attained
between the four measures also indicates that the four separate measures are not
measuring the same construct.

The relationship between community inclusion and the measures of quality of life
were anticipated in hypothesis three. There was a statistically significant relationship
between the total score of community inclusion and subjective quality of life (life
satisfaction) as measured on the Consumer Satisfaction Survey. There were also analyses
that considered the relationships among the four proposed components of community

inclusion to life satisfaction. There were statistically significant relationships found

104

 

between subjective quality of life community integration and social support. The weak
relationships between life satisfaction and both choice and social role were not found to
be statistically significant. A step-wise regression procedure using all four components
indicated that community integration as the only predictor variable for life satisfaction.
The significant differences found between agency groups on measures of
community inclusion were anticipated given the differences in the two groups with regard
to demographic variables. Given this, it was surprising that there were no differences
found on the measure of subjective quality of life between the groups. There is no
explanation for this finding. It is also unknown how this could have impacted the
relationship found between community inclusion and subjective quality of life as well as
the finding of community integration as the only predictor of subjective quality of life.
A Pearson correlation analysis indicated that there was a significant relationship
between adaptive behavior as measured on the ICAP and commrmity inclusion, the total
of the four components. The ICAP was also positively correlated with the measures of
choice and social role. A step-wise multiple regression procedure was used to identify
the relationship between community inclusion and social indicators. The best
combination of predictors included vocational/day program and us of physical aids. The
identification of vocational/day program and use of physical aids as predictors of
community inclusion seem reasonable in considering the impact that they could have on
each of the various components of community inclusion. While the inclusion of these
two social indicators in the model are not surprising, there is no explanation for their

inclusion and the exclusion of other social indicators.

105

The results of analyses examining the relationship between both subjective and
objective quality of life do not clearly support the acceptance of this hypothesis. First,
there was a statistically significant relationship between subjective quality of life and the
total score of community inclusion. There were also statistically significant relationships
between subjective quality of life and both community integration and social support.
There were no significant relationships found between life satisfaction and both choice
and social role. A step-wise regression procedure using all four components indicated
that community integration as the only predictor variable for life satisfaction.

An assumed result of community inclusion for people with mental retardation is
that greater community inclusion should yield greater subjective quality of life. There
were significant differences found between the two agency groups on both demographic
measures and measures of community inclusion. Given this there were three unusual
findings regarding subjective quality of life and the relationship to community inclusion.
Foremost, there was no significant difference in the measure of subjective quality of life
between the two agency groups. Second, there was no correlation between the measures
of as social role and choice. And finally, there was only one component found to be a
predictor of subjective quality of life using a step-wise multiple regression, community
integration. These findings indicate a need for further study for the constructs
community inclusion and subjective quality of life.

Second, while there is a clear relationship between ICAP scores and total
community inclusion scores as well individual component measures of choice and social
role, there is no relationship found with community integration and social support.

Finally, the step-wise multiple regression procedure used to identify the relationship

106

between community inclusion and social indicators identified the best combination of
predictors as vocational/day program and use of physical aids. The lack of explanation
for these specific predictors contributes to the inability to accept this hypothesis.

Hypothesis four anticipated differences in levels of community inclusion between
participants from Vocational Services and Transitions. The demographic variables from
the two groups were first tested to assure that they are actually two different groups.
Participants from Vocational Services had higher ICAP scores, less paid support, more
social roles, and more opportunity for choice. Participants from Transitions indicated
lower ICAP scores, greater paid support, fewer social roles, and lower opportunity for
choice-making.

Given that participants from Vocational Services tend to have higher levels of
adaptive behavior, greater independence, less need for paid support, and adequate
expressive communication, the higher scores from Vocational Services on total
community inclusion as well as each of the four individual components, were expected.
There were significant differences in on the community inclusion total, and the specific
measures of community integration and choice. There were also differences found on
social role an social support that were not found to be significant at the p<.05, although
they were significant at the p<.lO. While there were only differences found at the p<.05
level for community integration and choice, the differences found for social role an social
support are worthy of consideration. Therefore this hypothesis is also accepted but again
with caution given the level of significance for social role and social support.

In conclusion, the goal of this research was to define and measure community

inclusion. This study identified four possible components of the construct and identified

107

measures of each. The measures of community integration, social support and choice
were all determined to be internally consistent. There were significant relationships
found between the five of the six possible combination of measures appropriate
identifying relationship as well as independence of the measures. Although there were
some issues involved in the findings, the total score of community inclusion was related
to quality of life. Various components were related to both subjective and objective
measures of quality of life. There were significant differences found between two
different agency groups on total community inclusion. Differences were found between
the groups for community integration and choice at the p<.05 and between the groups for
social support and social role at the p<.10 level. The findings seem to indicate, that while
there is still a need for further research, this study has made a significant contribution to
that goal.
Ems

There are limitations that must be considered in the interpretation of the findings
of this study. These limitations come from both decisions made in planning the study and
issues that occurred when conducting the study. This study was limited in that the data
was collected from one tri-county community mental health agency in the state of
Michigan, therefore limiting the ability to generalize results. Also, the agency serves
approximately 800 people with mental retardation. There were 294 contacts made to
consumers or guardians requesting participation. All 126 consumers that agreed to
participate were interviewed. This limits the ability to generalize results to this agency.

There have been limitations with this study that could be addressed Specifically, future

108

research could be conducted in other community agencies both in the state of Michigan
and in other states.

Despite the 126 interview times scheduled there were only 108 interviews fully
completed. During the interview process there were occasions when the participant could
not comprehend a question enough to come up with a response. This happened more
frequently when a participant was asked an open-ended question.

Collecting data in various settings may be considered a limitation. Several
participants were interviewed in their homes or at their work sites. Often there was a
parent, spouse, roommate, co-worker, or staff member present or close-by during the
interview all at the participant’s consent. Despite the consent to have another person
present, this could have influenced the responses given

Given her internship experience with the agency, the researcher was familiar with
the agency and many consmners. This could be considered both an advantage and
limitation. Researchers advocate a more egalitarian relationship between the researcher
and the participant (Kelly, Dassoff, Levin, Schreckengost, Stelzner, & Altmann, 1988).
This researcher’s prior knowledge of the agency and consumers as well as their prior
knowledge of her, assisted in the establishment of an egalitarian relationship with
participants in this interview process. Kelly, et a1. (1988) refers to this as a period of
reconnaissance in which the researcher develops both working relationships and an
understanding of the culture.

Another limitation is the reliance on self-report from people with mental

retardation. These issues include acquiescence (Heal & Chadsey-Rusch, 1985; and

109

Matikka & Vesala, 1997), test-retest reliability, responsiveness, consistency, and
informant reliability (Heal & Sigelman, 1996).

Acquiescence is the tendency to respond affirmatively regardless of question.
While previous research has noted several issues in the assessment of people with mental
retardation, it was more important to this research that the information come from the
consumer rather than another informant interpreting the life of that individual.

Although the initial intention was not to increase motivation to participate,
receiving five dollars for the interview became an obvious motivation for most
participants. Given, there is no way of knowing the impact of this incentive on
responses, it was important to this researcher that I acknowledge the sacrifice of their
time and also my gratitude.

Implications of Findinga

There are several implications from this exploratory study. The hypotheses in this
study anticipated internal consistency of measures, relationship between measures of
community inclusion, relationship between community inclusion and quality of life, and
differences in scores on measures of community inclusion between the agency programs.
While the hypotheses regarding the internal consistency and relationship of measures
were accepted, as well as the programmatic differences in scores of community inclusion
were accepted with caution, acceptance cannot be made regarding the meaning of
community inclusion and its relationship to participants’ life satisfaction. With this in

mind, implications with regard to future research, practice, and training are discussed.

110

Implications for Future Reseaih

Of course there are many implications for future research. First, the
conceptualization and operationalization of community inclusion need to be investigated
further. Anticipated internal consistency, relationships between the measures, and
differences between the two agency groups on the measures support the
conceptualization. The relationship of the components to quality of life clearly indicates
a need for further investigation of the construct. Further investigation needs to address
both the operationalization of this construct as well as the measurement issues.

In addition, future research should address best practices and intervention
strategies. This could be addressed in using various research designs. Experimental
designs could identify changes in the experience of community inclusion given
modification in life situations specifically in home, work or leisure. Experimental
methodology would also be the means to evaluate intervention strategies. The use of a
qualitative research methodology could enlighten our understanding of the experience of
community inclusion. An intensive study of individual situations and experiences could
provide knowledge on process that leads to outcome.

The statistically significant relationships found between community integration
and the other three components of community inclusion (social role, social support, and
choice) find support from Storey’s (1993) “first step” belief. As Storey (1993) stated,
[community] integration is the necessary first step, the introduction to other forms of
integration (social integration and relationships). Given that community integration has
been the focus of services in the last two decades, the impact of community integration

on the psychological and social experience of community inclusion should be further

111

examined in regards to people who are living and working in integrated and those that
continue to live in segregated settings.
firm

When given in an interview format, most of the participants in this study had very
little trouble responding to the questions. The interview format eliminates the
consumer’s need to be able to read and complete the measures. The measures used in
this study could be used as interview protocols to identify strengths and needs of
individuals seeking services. While these measures may be appropriate for an interview
process, further research needs to identify their value as reliable measures of community
inclusion and quality of life.

There have been many interventions designed to advance community inclusion
and the components that have been used to operationalize community inclusion in this
study. There are numerous interventions that could be employed, so numerous that it is
not in the realm of this study. Ultimately, professionals attempting to implement
programs promoting community inclusion are urged to consider the saliency of consumer
differences along with their needs and desires.

Training Personnel

While interventions typically address the need of the consumer, there appears to
be a need for interventions to inform and train staff. For example, as identified in both
this and previous research, there is a lack of opportunity for choice-making among
individuals in both workshop and structured residential settings. This lack of choice-

making appears to be related to staff perception of the consumer or possibly people with

112

mental retardation in general. Staff training should address ways to promote self-
determination.
QCMLUSIQILS
This research proposed that community inclusion could be operationalized by the
sum of four components: (a) community integration, (b) social role, (c) social support,
and ((1) choice. The findings from this study provided some knowledge from which to

build. These measures appear to be adequate tools in helping community agency staff

"31

assess individual inclusion needs so steps may be taken to increase individual community

inclusion. While the field of rehabilitation as well as the field of mental retardation

supports a philosophy of community inclusion, it is important that it continue to be
operationalized further and subsequently measured.

Lord and Hutchinson‘(1993) stated “one of the cruelest myths experienced by
people with disabilities is that they do not have the same social needs as other citizens.”
(p. 10) While there have been numerous changes made in the lives people with mental
retardation, these changes are not enough. This research has taken one step in looking at
the experience community inclusion for people with mental retardation. It is important

that this research be built upon to further meet the social needs of this population.

113

APPENDICES

 

114

APPENDIX A

Guardian Transmittal Letter

Dear Guardian:

My name is Margaret Sebastian and I am a doctoral student at Michigan State University. As a
part of my training experience I am very interested in learning more about people with
developmental disabilities and their experience in the community. This survey process will be
monitored by both CEI/CMHB and Michigan State University.

To do this, Community Mental Health needs your permission to release the name of the person

for whom you are the guardian. They cannot release this information without your permission.
Participation in this study is important! This research may help mental health professionals to 1 ‘
better serve people with developmental disabilities.

 

Your consent would give me permission for the following:

1) participate in a face to face interview with the consumer lasting approximately
30 minutes;

2) access to consumer’s case file; and

3) information from agency staff regarding the consumer.

Participation is completely voluntary. The decision whether or not to consent to participation
will not jeopardize the services you or the consumer receives. The consent of the consumer will
also be requested prior to the interview. The consumer will be given the opportunity to refuse to
participate in the survey, refuse to respond to any question, or stop participating in the survey at
any time. All results will be confidentiaL and will remain anonymous in any report of research
findings.

As an incentive to participation in the survey, consumers who complete the interview will
receive $5.00.

Ifyou agree to consent to participation in the survey, please complete the attached consent
form and return it in the enclosed self-addressed stamped envelope.

Thank you in advance for yorn anticipated support and cooperation. If you have any questions
concerning this evaluation project, please contact me at (517) 351-9291.

Sincerely,

Margaret Sebastian
Graduate Student
Michigan State University

115

APPENDIX A

Consent Form and Authorization for Release of Information

Client Name:
Date of Birth:

I give my permission to release information pertaining to my child’s/ward’s care.

From: To: Margaret M. Sebastian
Michigan State University
401C Erickson Hall

East Lansing, MI 48823

 

 

 

I understand this record may contain mental health, drug and/or alcohol use/abuse
history, HIV/AIDS information, or ARC information as applicable to my
child’s/ward’s case.

The purpose of the release is for research purposes.

The specific records/information requested include:
1) assessments,
2) physician’s history and physical,
3) psychiatric/psychological evaluations/tests
4) verbal exchange information from agency staff
5) verbal exchange information from the consumer.

This authorization will expire one (1) year from the date of signature.
I understand that I may withdraw this authorization in writing at anytime unless

action has already been taken based on this consent. I have read or have had read
to me this consent form and understand what it means.

 

 

client/parent/ guardian signature Relationship Date

 

witness to the above signature Date

THE INFORMATION RELEASED WITH THIS AUTHORIZATION IS CONFIDENTIAL.
FURTHER DISCLOSURE OF THIS INFORMATION 18 PROHIBITED UNLESS
OTHERWISE PERMITTED BY FEDERAL AND STATE LAWS.

(Please return this form in the enclosed selfiaddressed stamped envelope).

116

APPENDIX 8
Community Inclusion Research-Volunteer Protocol
Dear Consumer:

I am a student at Michigan State University. I am doing research on community
inclusion. In order to learn about community inclusion I would like to hear about your
life and experiences. I would like to have your permission to release your name to her.
Your participation is extremely important! The information that you provide may
help better serve the people in this program.

If you agree to participate in this study, 1 will contact you and arrange a meeting time to
ask you questions about your life and activities in the community. The interview should
take no more than 30 minutes to complete. Your consent would give me permission for
the following:

I) participate in a face to face interview with the consumer lasting approximately
30 minutes;

2) access to your case file; and

3) information from agency staff about you.

Participation is completely voluntary. This means that you can not be made to
participate. It also means that if you choose to participate you may quit at any time.

Any information you provide will be held in strict confidence. This means that no one
except me, the researcher, (Margaret Sebastian) will know the answers that you give. All
results will be confidential, and you will remain anonymous in any report of research
findings. This means that what you say to her is a private and you will never be identified
as having said something. She may use some of the things that you say to present this
research but she will not tell anyone that you were the one that said it.

If you are selected to participate and you complete the interview, you will be paid
$5.00. If you would like to volunteer to participate in this study please let me know and I
will give your name to the researcher. Again if you are selected Margaret will contact
you to arrange meeting times.

Thank you for your support and cooperation. If you have any questions concerning this
evaluation please call Margaret Sebastian at (517) 351-9291. Thank you for your support
and cooperation.

Sincerely,

Margaret Sebastian

Graduate Student

117

APPENDIX B

Consumer Consent Form

Program Name:

Participant Name:

 

Address:

 

Phone:

 

Best time of day to interview:

By completing and returning this form, you verify that you have received voluntary
agreement from above individual to participate in the research that will be
conducted by Margaret M. Sebastian at Michigan State University. You have also
witnessed the signing of the consent form.

Signature:
Position:

 

 

Sign and Return the consent form to:
Richard Coelho

913 W. Holmes Suite 280

Lansing, MI 48910

118

APPENDIX B

Community Inclusion lnfonned Consent Form

. I have freely agreed to participate in the study being conducted by Margaret M.
Sebastian from Michigan State University.

. This study has been explained to me and all of my questions have
been answered to my satisfaction.

. I agree to complete all interviews with Margaret M. Sebastian and to allow
the interviews to be audio taped.

. I agree to allow Margaret M. Sebastian to gain information from my case
files, program records, my case manager, and CSDD staff that are familiar
with me.

. I understand that the information that I provide in the interview is
confidential/ private and that no information concerning my case or
something I said will be attributed to me. No individual will be identified

. I understand that failure to participate in this study or to quit at any point
during the study will in no way impact my services from CSDD or any other
agency.

. I understand that participation in the interviews are for research and
there is no treatment. involved

. I understand that agreement to participate in this study will remain in effect
for 60 days from the date of this agreement.

. I understand that upon completion of the second interview I will
receive five dollars from the researcher, Margaret Sebastian.

Signed: Date:

119

APPENDIX C

INTRODUCTION and CONSENT

Dear Consumer:

I am a student at Michigan State University. I am doing research on community
inclusion. In order to learn about community inclusion I would like to hear about your
life and experiences. I would like to have your permission to release your name to her.
Your participation is extremely important! The information that you provide may
help better serve the people in this program.

Participation is completely voluntary. This means that you can not be made to
participate. It also means that if you choose to participate you may quit at any time.

Any information you provide will be held in strict confidence. This means that no one
except me, the researcher, (Margaret Sebastian) will know the answers that you give. All
results will be confidential, and you will remain anonymous in any report of research
findings. This means that what you say to her is a private and you will never be identified
as having said something. She may use some of the things that you say to present this
research but she will not tell anyone that you were the one that said it.

By completing and returning this survey interview, you indicate your voluntary
agreement to participate. As a way of thanking you for your participation, if you
choose to complete this survey you will receive $5.00.

So, can we start the survey?

YES NO

THANK YOU!

120

APPENDIX D

Community Activity and Participation Checklist Form

 

Within the past thirty days have you:

YES

2
O

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

1. Been to a grocery store or food store? 1 0
2. Been to a department store such as Meijers, Targeg or WalMart? 1 0
3. Seen a movie in a movie theater? 1 0
4. Watched a rented movie with friends or family? 1 0
1. Eaten at a fast food restaurant such as McDonald’s or Wendy’s? l 0
2. Eaten at a sit down restaurant? (where you are waited on) 1 0
3. Stayed overnight at a hotel/motel? l 0
4. Been to a recreation or exercise facility such MAC or the Y? 1 0
5. Been to a park? 1 0
6. Been to a mall? I 0
7. Been to a bar or dance club? 1 0
8. Been to an ice cream or frozen yogurt shop? 1 0
13. Stayed overnight at a fiiends? 1 0
14. Attended a church or synagogue service or social? 1 0
15. Volunteer at a community event? 1 0
16. Gone to a bowling alley? 1 0
17. Gone to a pool hall? 1 . 0
18. Visited a museum? 1 0
19. Attended a concertLplay or other musical production? 1 0
20. Participated in a league such as bowlinng arts, or pool? 1 0
21. Participated on a sports team such as soccer, or football? 1 0
22. Attended a sporting event such as a football or basketball game? 1 0
23. Participated in a support group? 1 0
24. Other? 1 0
25. Other? 1 0

 

 

 

121

 

 

following questions. Interviewer: Read each question to the participant. If the participant responds
es ", read the follow-up question(s) and record the response.

APPENDIX E

SOCIAL ROLE CHECKLIST

Read to Participant: 1 would like to know the social roles which you perform. Please answer the

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

YES NO F ollow-up questions if response is
yes:
1. Are you someone’s friend? a. What are some things that you
1 0 do as this person’s friend?
2. Are you a member of a church? a. What are some things you do
1 O as a member of your church?
3. Are you a member of a club? a. What is your role in the club?
1 (l (e. g., off icer, active member,
committee chair, etc. )
4. Have you ever participated in an :1. ‘Which group?
advocacy group like Partners in l O b. What did you do in this group?
Policy Making or People First? c. How long did you participate?
5. Have you ever been a member of a. How have you supported
a support group? I () others in the group?
6. Are you a husband/wife or boy a. What do you do as a -------?
or girlfriend? I (l
7. Are you a parent? :1. What special things do you
1 0 have to do as a parent?
8. Have you helped someone a. How did you help them?
lately? I 0
9. Do you volunteer anywhere? a. What do you do as a
l () volunteer?
l0. Are there any other roles that a. What are the responsibilities
you have? 1 (l of this role?

 

 

122

 

—.~r
J

 

r. ———-r‘« -‘

APPENDIX F

Social Supports Self-Report

Consumer Identification number:

 

Read to Participant: Now, I would like to know about relationships that you have.
Please answer the following questions.
Interviewer: Read each question to the participant and record the response.

1. Doyou live with anyone? 1. YES 2. NO
2. Are you married?

1) YES [If yes] Spouse’s name

 

2) NO [If unmarried] Do you have a boyfriend or girlfriend?
1) YES [If yes] What is his or her name?
Where does s/he live?

 

 

2) NO

3. Is your mother alive? 1) YES [If yes] Where does she live?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2) NO
4. Is your father alive? 1) YES [If yes] Where does he live?
2) NO
5. Doyou have any:
1 brothers? 1. YES Ifyes, how many? If yes, where do they live?
0. NO
b. sisters? 1. YES Ifyes, how many?
0. NO
c. aunts? 1. YES If yes, how many?
0. NO
d. uncles? 1. YES If yes, how many?
0. NO
e. grandparents? 1. YES Ifyes, how many?
0. NO

 

 

 

 

6. Of those people who do you get along with best?

 

 

123

APPENDIX F

7. Do you have any friends?

1) YES [If yes] Who are they?

 

2) NO
8. A. Who is your best friend?
B. Where does s/he live?

 

 

9. A. Who is your second best friend?
B. Where does s/he live?

 

 

10. Do you have any roommates?
1) YES [If yes] Who are they?

 

2)NO

11. Do you have friends at work?
1) YES [If yes] Who are they?

 

2) NO

12. Do you have any staff?
1) YES [If yes] Who are they?

 

2) NO

13. Is there any body else important to you?
1) YES [If yes] Who?

 

2)NO

14. If you needed something or you are lonely is there someplace you can go to be with
other people?

 

1) YES [If yes] Where?

 

2)NO

124

APPENDIX F

DIRECTIONS :

1) List each important person or group of persons (family, staff, friends, partner) using
the responses identified above in the first column of the table below.
2) Ask the listed questions about each support source
3) Use three color coded cards with the three response choices on them to be placed in
front of participant. Less verbal participants may chose to point to a particular card
rather than
speak their selection. If the person cannot read, until they are familiar with the
choices, be sure to give the choices in random order to control for response biases.
4) The choices are:
3) a lot (red card)
2) sometimes (yellow card)
1) not at all (blue card)

5) The questions to use are:

 

 

 

 

 

 

A. How often do you see your or talk to on the phone?
B. How often do you talk to about your feelings?

C. How much do you like ?

D. How much does help you with your problems?

E. How much do you help with his/her problems?

Scoring:

Subscale for each support source: sum items a-e for that support source. If they do
not have family or a partner or staff, then that subscale score is zero. They receive
no support and give no support to that source.

Also reciprocity subscale can be computed by summing item across support sources.

125

APPENDIX F

3) a lot (red card) 2) sometimes (yellow card) 1) not at all (blue card)
0) not appropriate

 

Name A. B. Feelings C. D. E.
Talk Like Feelings Reciprocifl

 

A. Spouse/ Sweetheart

 

B. Mother

 

C. Father

 

D. Brothers

 

E. Sisters

 

F. Aunts

 

G. Uncles

 

H. Grandparents

 

l. Roommates

 

J. Staff

 

K. Work Friends

 

L. Best Friend

 

 

 

 

 

 

 

 

126

 

APPENDIX G

CHOICE Questionnaire

Interview instructions: Some items, like item two have more than one question to
help clarify the degree of choice for that item. Ask each question and wait ten seconds
for a response before asking the next question for that item. Probe responses if necessary
to aid accurate scoring. Some suggested probes are listed in parentheses after the items.
These suggested probes do not have to be asked if the person participates actively in the
decision (e.g., is asked for his or her ideas or preferences).

0 Category 1: Others decide most or all of the time and the person has little or no say.
Choose this category if the person has little or no say regardless of whether it is staff,
family, or other residents who make the decision or prevent the person from doing
what he/she wants. If the person has had no opportunity to make the decision this I
would generally be scored as 1. With item 3 for example, someone who never cooks,
never has the opportunity to decide what he or she will cook and so is scored as not
making that decision (i.e., category 1). Likewise, if the person does not know who
makes a given decision give a score of 1. If the person does not genuinely participate
in the decision then he/she may simply not know who actually decides. Scoring for
some items includes two or more alternative standards linked by the word OR. Give
a score of 1 on that item if any one of the standards are met.

 

u... _ _
fl

Example: Item 2 is about deciding which jobs to do around the house. Take the
example of someone who shares an apartment.

0 Category 3 - The roommates work out between them which jobs need to be done and
which jobs each will perform. There is no direct involvement from family or staff in
the process other than occasional comment or reminder.

0 Category 2 - The roommates along with family or staff, work out the jobs to do and
who will do them. They formalize this with a roster or list. That is the roommates
participate in choice with the help of others.

127

APPENDIX G

Identification Number

CHOICE QUESTIONNAIRE

 

A. Who decides what time you go to bed? (Does anyone tell you what time to go to
bed?, Are there any rules about what time you shoulrLgo to bed?)

 

3. I decide for myself

 

2. I usually decide with
some help. Sometimes
others tell me.

 

l. I have a set bedtime OR
others mostly tell me
when to go to bed.

 

B. Who decides which jobs you do around the house? Do you have a set of jobs or
a roster? Who works out the roster/set jobs?

 

3. l/We choose the jobs
I/we do.

 

2. I/We usually choose with
the help of staff make the
roster.

 

1. Others mostly tell me.
OR My jobs are set up by
a roster or a list made up
by someone else.

 

C. Can you get yourself a drink or something to eat whenever you want?
Anytime? Do you have to ask someone first?

 

3. Yes, I can have a drink
whenever I want.

 

2. I can usually have a
drink or snack but I have to
ask first.

 

1. No. I am usually .
allowed to have a drink
or snack OR I can only
have them on special
occasions.

 

D. What rules are there for using the telephone? Can you make a call whenever

you want?

 

3. I can use the phone
whenever it is already in
use.

 

2. I can usually make calls
but I may have to ask staff.

 

1. I am unable or not
allowed to use the
phone OR my phone
use is restricted.

 

 

E. Who decides if you can have a pet (like a bird, dog, or cat) if you want one?
Can you have any kind of pet that you want? Do you have to ask before you can

iet a pet?

 

3. 1 can have a pet ifl want
with not restrictions.

 

2. There are restrictions on
the type of pet because
of the landlord OR I
have to ask someone
first.

 

1. I am not allowed to
have a pet Or others
decide. I do not have a
say.

 

128

 

APPENDIX G

 

F. What are the rules about you being in the house by yourself (without staff)?
Can you be in the house by yourself if you want to? Anytime?

 

3. I can be by myself at
anytime with no
restrictions.

 

2. Sometimes I can be by
myself (in certain situations)

 

l. I am not allowed to be
in the house by myself.

 

G. Who decides how much money you take out of the bank? Can you take out as
much money as you want? Do you ask anyone how much to take out?

 

3. I decide without help
and with no restrictions on
how much to withdraw.

 

2. I have help deciding how
much to take out OR I ask
someone how much to take
out OR I have a limit on
how much I can withdraw.

 

1. Others decide how
much I withdrew. I am not
consulted.

 

H. Do you drink alcohol like beer or wine? Who decides if you can drink beer or
wine? Do you have to ask anyone to drink alcohol?

 

3. I decide.

2. I decide with help (I ask
someone (staff or family)
OR I don’t drink because of
medical reasons.

1. Others decide (they tell
me if I am allowed to
drink).

 

 

1. Does anyone stop you from going out? Is there anywhere you are not allowed?

 

3. I can go wherever]
want. No one stops me.

 

2. There are one or two
place that I am not allowed
to go.

 

1. Others often stop me
from going out OR I
almost always go with staff
or family.

 

J. Can you come home late from work/day activities? Do you have to tell anyone
first or call in? LDo yorggt in trouble for cominmme late?)

 

3. I can come home late
whenever I want. I do not
have to tell anyone first.

 

2. I can be late if] want,
but I am supposed to ask/tell
someone first or call first. I
get into trouble if I do not
call first.

 

1. Other decide OR I am
not allowed to be late OR I
have no opportunity to stop
off after work and get
home late.

 

K. What happens if you wan to take a day off work when you are not sick? If you
'ust feel like havingthe day off? Do you have to ask anyone first?

 

3. Idecide. Imight lose
pay though.

 

2. I decide with help. I ask
others (family or staff).

 

1. Others mostly decide, I
have no real say. OR I am
not allowed to I have to

attend work/day activities.

 

L. Overall, would you say that your life is free so that you can choose what you

want? All of the time?

 

 

3. Yes, definitely.

 

2. Yes most of the time.

 

1. No. I cannot do what I
want.

 

129

 

 

APPENDIX H

Consumer Satisfaction Survey
Identification Number:

 

Directions:(Read to the interviewee) Sometimes during this interview I will
ask you a question and you can give me an answer. Sometimes during

this interview we are going be using a scale. (Show scale). This scale
shows three different ways in which you may feel HAPPY, OKAY, or
UNHAPPY. This is happy (point). This is okay (point). This is

unhappy (point).

 

I 1., . ’ Do you feel Happy, Okay, or Unhappy about yOur life Ill general?
' (Circle the response that best describes the respause). ‘ . '

1 Happy
2. (Mary
. *3.- Unhappy

 

2. Do you feel Happy, Okay, or Unhappy about where you live?
(Circle the response that best describes the response).

1. Happy
2. Okay
3. Unhappy

 

3. Where would you like to live?
(Circle the response that best describes the response)

1) Where I am living now.

2) By myself.

3) Alone but with some help.

4) With some friends.

5) With my parents or sibling.

6) In a group or foster home.

7) With relatives other than my parents or brother/sister.

8) OTHER (specify)

 

 

 

 

130

APPENDIX H

Consumer Satisfaction Survey

 

4. Do youfeel Unhappy, Okay, or Happy about where you spend the day?
(Circle the response that best describes the response).

1. Happy
2. Okay

3. Unhappy

 

5. Where would you like to work or spend your day?
(Circle the response that best describes the response).

1. I want to stay with what I am doing now.

2. I do not want to work.

I want to work at Transitions full-time.

I want to work in the community with a job coach.

I want to work in the community with no job coach.
I want to volunteer in the community.

I would work in my home.

Other (please specify):

asses?

 

6. Do you feel Unhappy, Okay, or Happy about how you spend your free time? (Circle
the response that best describes the response). :
1. Happy
zany 

g 3. Unhappy _

 

 

7. How would you like to spend your free time?

 

131

 

APPENDIX H

Consumer Satisfaction Survey

 

8. Do you feel Happy, Okay, or Unhappy about your current friendships? (Circle the
response that best describes the response).

1. Happy
2. Okay

3. Unhappy

 

9. Which would you say is most true about your wish about the number of friends you
would like to have. (Read responses and circle the response that best describes the
consumer’s response)

1. I would like to have the same number of friends that I have now.
2. I would like to have fewer friends than I have now.

3. I would like to have more friends than I have now.

4. OTHER (specify):

 

10. Are you happy with your life, overall?
1) Yes

2) No

 

11. What is it about your life that makes you happy?

 

12. What is it about your life that makes you unhappy?

 

13. What is it about your life that you would like to change?

 

132

 

 

I-Aa“ —_ u
v , .—

E)

F)

APPENDIX I

Demographic Information

Identification number:

 

 

 

 

Date of Birth:

Age: (in years)
Current Residential Setting: (circle)
I. with family

2. with friends

3. independent/by self

4. nursing home (Name)

5. AIS home (Name)

6. AFC home (Name)

7. CMHB Operated home (Name)
8. Contract Operated Home (Name)
9. Other:

How many hours of paid support does the individual receive per week?
Please provide the number of hours and number of consumers per each staff.

1. In Day Activity or Work

 

 

2. In Daily Living or at Home

 

S”???

 

Day Activity (circle appropriate program)

hours
consumers per one staff
hours
consumers per one staff

1. Vocational Services (specify work site )

2. Transitions North
3. Transitions South

4. Transitions Central
5. Other (Specify)

Gender: 1)Male 2) Female

Given general knowledge of this individual’s health, would he/she be

1) Excellent
2) Good
3) Fair
4) Poor

133

APPENDIX I

I. Given general knowledge of this individual should he/she be described as:

sweep: ;

1) High Income
2) Moderate Income
3) Low Income

Circle the one statement below that best describes the individual’s receptive
communication.
1) Understands spoken language
2) Understands structured sign language
3) Understands by depending on lip reading or written materials
4) Understands using gestures, facial expressions, or simple
pictograms

Circle the one statement below that best describes how the individual
communicates with others?

1) Verbally using sentences and phrases

2) Verbally using a limited number of words

3) Using structured sign language

4) Using a symbol board or writing

5) Using gestures and/or noises, or primitive symbols

Does the individual need any of the following physical aids?
(Circle all that are needed)
1) glasses
2) wheelchair
3) hearing aid
4) adaptive equipment to eat
5) g or j tube
6) cane, crutches, or walker
7) helmet
8) hand splints
9) Other

Is the individual on a behavior treatment plan? 1) YES 2) NO

ICAP Total Score/Service Score
Community Integration

Social Role Score

Social Support Score

Choice Score

Life Satisfaction Score

 

 

 

 

 

 

134

 

References

American Association on Mental Retardation. (AAMR) (1992). News and notes,
5 (1), 1-8.

Baroff, GS. (1986). Maximal adaptive competency. Mental Retardation. 24 367-
368.

Bercovici, SM. (1983). flrfiers to normalization: The restrictive management
of retarded aeoale. Baltimore: University Park Press.

Bolton, B., & Brookings, J. (1996). Development of a multifaceted definition of
empowerment. Rehabilitrgion CounselingBulletin, 39 (4), 256-264.

Borthwick—Duffy, SA. (1996). Evaluation and measurement of quality of life:
Special considerations for persons with mental retardation. In R.L. Schalock & (3N.
Siperstein (Eds), Quality of Life: Conceptualiaation and Measuremen_t. (pp. 105-120).
Washington, DC: American Association on Mental Retardation.

Braddock, D. (1994). Presidential address l994: New frontiers in mental
retardation. Mental Retardation, 434-443.

Bradley, VJ. (1994). Evolution in a new service paradigm. In VJ. Bradley, J.W.
Ashbaugh, & B.C. Blaney (Eds). Cleatjag individual stamens for people with
developmental disabilities: A mandate for change at many levels. (pp. 11-32) Baltimore:
Paul H. Brookes Publishing.

Bricker, D. (1995). The challenge of inclusion. barge; of Early lnterventiom l9

(3), 179-194.

135

Browning, P., Thorin, E. & Rhoades, C. (1984).A national profile of self-
help/self-advocacy groups of people with mental retardation. Mental Retardation, 22
(5), 226-230.

Bruininks, R.H., Bradley, K., Hill, B.H.., Weatherman, RF, & Woodcock, R.W.
(1986). Inventory for client and agency planning. Allen, TX: DLM Teaching
Resources.

Bruininks, R.H., Woodcock, R.W., Hill, B.H., & Weatherman, RF. (1985).
Development and standardization of the Scales of lndggendent Behavior. Allen, TX:
DLM Teaching Resources.

Bullock, C.C., & Mahon, M.J. (1992). Decision making in leisure:
Empowerment for people with mental retardation. Leisure Today, 12-17.

Burchard, S.N., Rosen, J.W., Gordon, L.R., Hasazi, J.E., Yoe, J.T., & Dietzel,
LC. (1992). A comparison of social support and satisfaction among adults with mental
retardation living in three types of community residential alternatives. In J .W. Jacobson,
S.N. Buchard, & P.J. Carling (Eds), Community Living for People with Developmental
and Psyfichaatric Disabilities. (137-154) Baltimore: The Johns Hopkins University Press.

Condeluci, A., & Williams, J .M. (1997). Consumer: Individual and famflies. In
D.R. Maki & T.F. Riggar (Eds) (pp. 111-123), Mabiliaation Cauaseling: Profession
and Practice. New York: Springer.

Cone, AA. (1994). Reflections on self-advocacy: Voices for choices. Marital

Retardation 32, 444-445.

 

Cohn, J. (1988). Statistical power aaalvsia for the behavioral science; Hillsdale,

NJ: Erlbaum.

136

Day, H. & Alon, E. (1993). Work, leisure, and quality of life of vocational

rehabilitation consumers. Canadian Journal of Rehabilitation, 7 (2), 119-125.

Elks, M. A. (1994). Valuing the Person or valuing the role? Critique of social

role valorization theory. Mental Retardation 32 (4), 265-271.

 

Fabian, ES. (1990). Quality of life: A review of theory and practice implications
for people with long term mental illness. Rehabilitation PsvcholM (3), 161-170.

Fabian, ES. (1991). Using quality-of-life indicators in rehabilitation program
evaluation. galabilitation Counseling Bulletin, 34 (4), 344-356.

Fabian, ES. (1992). Supported employment and the quality of life: Does a job
make a difference? Rehabilitation Couaseling Bulletin, 36 (2), 84-97.

Felce, D. & Perry, J. (1995). Quality of life: Its definition and measurement.
Research in Developmental Disabilities. Research in Developmental Disabilities, 16, 51 -
74.

Flanagan, JG (1978). Measurement of quality of life: Current state of the art.
American Psychologist. 33, 138-147.

Fraenkel, J .R., & Wallen, NE. (1993). How to desiga and evaluate research in
education (Second Edition). New York: McGraw-Hill, Inc.

Gearheart, B. R., Weishahn, M.W., & Gearheart, C. J. (1988). The excepticfll
student in the regular classroom. (4th edition). Columbus: Merrill Publishing
Company.

Gliner, J .A., & Sample, P. (1993). Community life options for persons with

developmental disabilities. OSERS, VI. (1) 25-32.

137

Halpem, AS. (1994). Quality of life for students with disabilities in transition
from school to adulthood. Social Indicators Research, 33, 193-236.

Hamer, C.J. & Heal, L.W. (1993). The multifaceted lifestyle satisfaction scale
(MLSS): Psychometric properties of an interview schedule for assessing personal
satisfaction of adults with limited intelligence. Reflrch in DevelopmenQDiaabilities,
M, 221-236.

Hill, BK. (1988). Compuscore for the ICAP: Inventory for Client and Agency
Planning. The Riverside Publishing Company.

Heal, L.W., & Chadsey-Rusch, J. (1985). The Lifestyle Satisfaction Scale (LSS):
Assessing individuals’ satisfaction with residence, community setting, and associated
services. Applied Resgrch in Mental Retardatioa, 6 475-490.

Heal, L.W., & Sigelman, CK. (1995). Response biases in interviews of
individuals with limited memtl ability. Journal of Intellecaial Disagbilig Research, 39,
331-340.

Heppner, P.P., Kivlighan, D.M., Jr., & Wampold, BE. (1992). Research des_igr_r
in counseling. Pacific Grove, CA: Brooks/Cole Publishing Company.

Houghton, J ., Bronicki, G., & Guess, D. (1987). Opportunities to express
preferences and make choices among students with severe disabilities in classroom
settings. Jamal of the associafition for persona with severe Landicapalz (I), 18-27.

Hughes, & Hwang (1996). Attempts to conceptualize and measure quality of
life. In R.L. Schalock & G.N. Siperstein (Eds), Qualigv of Life: Conceptualization and
Measurement. (pp. 51-62). Washington, DC: American Association on Mental

Retardation.

138

Hughes, C., Hwang, 8., Kim, J .H., Eisenman, L.T., & Killian, DJ. (1995).
Quality of life in applied research: A review and analysis of empirical measures.
American Journal on Mental Retardation, 99, 623-641.

Jacobson, J .W. & Buchard, SN. (1992). Overview fo clinical services, social
adjustment, and work life in communtiy living. In J .W. Jacobson, SN. Buchard, & P.J.
Carling (Eds), Community Living for People with Developmental and Psychiatric
Disabilities (pp. 5-19) Baltimore: The Johns Hopkins University Press.

Jenkins, W., Patterson, J .B., & Szymanski, E.M., (1992). Philosophical,
historical, and legislative aspects of the rehabilitation counseling profession. In R.M.
Parker & E.M. Szymanski (Eds), Rehabilitation counseliag: Baaics and beyond. (2nd
edition), (pp 1-40) Austin, TX: Pro-Ed

Kelly, J .G (1988). A guide to conducting prevention research in the community.
New York: Hawthorne Press.

Keys, C.B., Balcazar, F.E., Bartunek, J .M., & Foster-Fishman, PG. (1995).
Anchoring research in the culture of persons with developmental disabilities. Manuscript
submitted for publication.

Langone, J. (1996). Mild mental retardation. In P.J. McLaughlin & P. Wehman
(Eds). Mental retardation and developmental disabilities. (2“d edition) (pp. 113-129)
Austin, TX: Pro Ed, Inc.

Lancioni, G.E., O’Reilly, M.F., & Emerson, E. (1996). A review of choice
research with people with severe and profound developmental disabilities. Research in

Developmentfl Disabilities, 17, (5), 391-411.

139

Landesman, S. (1986). Quality of life and personal life satisfaction. Definition
and measurement issues. Mental Retardationa24 141-I42.

Levine, M. & Perkins, D.V. (1987). Principles of Community Psychology. New
York: Oxford University Press.

Lord & Hutchinson (1993). The process of empowerment: Implications for
theory and practice. Canadian Journal of Community Mental Health, 12 (1), 5-22.

Lunsky, Y. & Benson, BA. (1997). Reliability of ratings of consumers with
mental retardation and their staff on multiple measures of social support. American

Journal of Mental Retardation 102 (3), 280-284.

 

Magis-Agosta, K. (1994). Organizational transformations: Moving from
facilities to community inclusive employment. In V.J. Bradley, J .W. Ashbaugh, & B.C.
Blaney (Eds). Cleatiag individual supports forpeople with developmental disabilities: A
mandate for change at many levels. (pp. 255-269) Baltimore: Paul H. Brookes
Publishing.

Maki, D.R., & Riggar, T.F. (1997) Rehabilitation counseling: Concepts and
paradigms. In D.R. Maki & T.F. Riggar (Eds) (pp. 3-31), Rehabilitation Coun_seling:
Profession and Practice. New York: Springer.

Maslow, AH. (1954). Motivation aad personality. New York: Harper.

Matikka, L.M., & Vesala, HT. (1997). Acquiescence in quality of life

interviews with adults with mental retardation. Mental Retardation 35 (2), 75-82.

 

Miller, A.B., & Keys, C .B. (1996). Awareness, action, and collaboration: How
the self-advocacy movement is empowering for persons with developmental disabilities.

MentarlRetaaglation. 34 (5), 312-319.

140

 

Millington, M.J., Szymanski, E.M., & Hanley-Maxwell, c. (1994). Effect of the
label of mental retardation on employer concerns and selection. Rehabilitaaion
CounsLeling Bulletin, 38 (1) 27-43.

Newman, B.M., & Newman, PR. (1991). Development through life: A
psychosocial approach. (5“n Edition), Pacific Grove, CA: Brooks/Cole Publishing
Company.

Newton, J .S., Homer, R.H., Ard, WR, & LeBaron, N. (1994). A conceptual
model of social life of individuals with mental retardation. Menaarl Retardationa3a2 (6),
393-402.

Olney, M.F. & Salamone, PR. (1992). Empowerment and choice in supported
employment: Helping people to help themselves. Joumal of Applied Rciialailitation
CourLseliag. 23 (3) 41-44.

Parameter, TR. (1992). Quality of life for people with developmental disabilities.
InterMnal Review of Research in Menfi Retardation 18, 247-287.

Pierce, T.B. Jr., Luckasson, R., & Smith, DD. (1990). Surveying unstructured
time of adults with mental retardation living in two community settings: A search for
normalization. Exceptionalitv. 1. 123-134.

Racino, J .A. (1994). Living in the community: Independence, support, and
transition. In F.R. Rusch, L. DeStefano, J. Chadney-Rusch, L.A. Phelps, & E. Szymanski
(Eds), T_ra_n_sition from school to adult life (pp. 407-424). Sycamore, Illinois: Sycamore

Publishing Company.

141

 

Reiss, S., &Benson, B. (1985). Psychosocial correlates of depression in mentally
retarded adults: Minimal support and stigmatization. American Journal of Mental
Deficiency, 89, 331-337.

Rubin, SE. & Roessler, RT (1995). Foundations of vocationflehabilitation
p_r_o_ce_ss (4th edition). Austin, TX: PRO-ED.

Sands, DJ. & Kozleski, EB. (1994). Quality of life differences between adults
with and without disabilities. Education and Training in Mental Retardation, 90-101.

Schalock, R.L. (1990). Attempts to conceptualize and measure quality of life. In
R.L. Schalock (Ed), Quality of Life: Persgctives and Issues. (pp. 141-148).
Washington, DC: American Association on Mental Retardation.

Schalock, R.L. (1994). Quality of life, quality enhancement, and quality
assurance: Implications for program planning and evaluation in the field of mental

retardation and developmental disabilities. Evaluation and Prgggim Planning] 7, 121-

 

131.

Schalock, R.C., & Kieman, WE. (1990). Habilitation planning for adults with
disabilities. New York: Springer-Verlag New York, Inc.

Sharpton, W.R., & West, MD. (1996). Severe mental retardation. . In P.J.
McLaughlin & P. Wehman (Eds). Mental retardationfiand developmental disabilities.
(2“‘1 edition) (pp. 131-145) Austin, TX: Pro Ed, Inc.

Sigelman, C. K. & Budd, E. C. (1986). Pictures as an aid in questioning mentally
retarded persons. Rehabilitation Counseling Bulletin, 173-181.

Sigelman, C.K., Schroenrock, C.J., Budd, E.C., Winer, J .L., Spanhel, C.L.,

Martin, P.W., Thomas, S.G., & Bensberg, (1983). Communicating with mentally

142

 

retarded persons: Asking questions and getting answers. Lubbock, TX: Research and
Training Center in Mental Retardation, Texas Tech University.
Sigelman, C.K., Winer, J .L. & Schroenrock, C.J. (1982). The responsiveness of
menatlly retarded persons to questions. Education and Training of the Mentally
Retard 17, 120-124.
SPSS (1999). SPSS Base 9.0 Applications Guide. United State of America.
Stancliffe, R.J. (1997). Community residence, size, staff presence and choice.

Mental Retardation 35, 1-9.

 

Stancliffe, R.J. & Abery, RH. (1997). Longitudinal study of deinstitutionalized
and the exercise of choice. Mental Retardation,35 (3), 159-169.

Stancliffe, R.J. & Paramenter, TR. (1997). The choice questionnaire: A scale to
assess choices exercised by adults with intellectual disability. (submitted for
publication).

Stancliffe, R.J. & Wehmeyer, ML. (1995). Variability in the availability of
choice to adults with mental retardation. Journal of Vocflnal Rehabilitation, 5, 319-
328.

Storey, K. (1993). A proposal for assessing integration. Education and Training

in Mental Retardation 28, 279-287.

 

Storey, K., & Certo, NE (1996). Natural supports for increasing integration in
the workplace for people with disabilities: A review of the literature and guidelines for
implementation. Wiligfion Couaseling Bulletin. 40 (1), 62-76.

Taylor, SJ. (1992). The paradox of regulations: A commentary. Mental

Retardation, 185-190.

143

Taylor, S.J., & Bogdan, R. (1990). Quality of life and the individual’s
perspective. In R.L. Schalock (Ed), Quality of Life: Perspectives and Issues. (pp. 27-
40). Washington, DC: American Association on Mental Retardation.

Taylor, S.J., & Bogdan, R. (1996). Quality of life and the individual’s
perspective. In R.L. Schalock & G.N. Siperstein (Eds), Qualigy of Life:
Conceptualization and Measurement. (pp. 11-22). Washington, DC: American
Association on Mental Retardation.

Vandergriff, D.V., & Chubon, RA. (1994). Quality of life experienced by
persons with mental retardation in various residential settings. The Journal of

Rehabilitation, 60 (4), 30-37.

 

Walker, VS. (1988). Presidential address 1988: Conquest of mental retardation.
Mental Retardation, 251-255.
Wehmeyer, M.L., & Metzler, CA. (1995). How self-detennioned are people

with mental retardation? The national consumer survey. Mental Retardation 33 Ill-

 

] 19.

Williams, F. (1992). _Re_asoning with Statistics: How to read quantitative
rasaaigla Fourth Edition. Fort Worth: Harcourt, Brace, Jovanovich College Publishers.

Wolfe, P., Kregal, J., & Wehman, P. (1996). Service delivery. In P.J.
McLaughlin & P. Wehman, (Eds). Mental Retardation and DevelopmentflDigibilities.
(pp. 3-27). Austin, TX: Pro-Ed.

Wolfensberger, W. (1983). Social role valorization: A proposed new term for

the principle of normalization. Mental Retardation 21, 234-239.

 

144

 

Wolfensberger, W., & Tullman, S. (1991). A brief outline of the principle of
normalization. In M.B. Eisenberg & R.L. Glueckauf (Eds), Engirical approaches to the
psychosmiflamcts of disability. (pp. 202-215). New York, NY: Springer Publishing
Company.

Wortman, C.B., & Loftus, BE (1988). Psychology. New York: Alfred A.
Knopf.

Wright, G.W. (1980). Bid Reharbilitation. Boston, MA: Little, Brown.

Zirpoli, T.J., Wieck, C. Hancox, D., & Skarnulis, ER. (1994). Partners in

Policymaking: The first five years. Mental Retardatiog, 32 (6), 422-425.

145