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This is to certify that the

dissertation entitled
THE DEVELOPMENT, IMPLEMENTATION AND FIELD-
TESTING OF INSTRUCTIONAL METERIALS TO TRAIN
SERVICE PROVIDERS AS ADVISORS TO SELF-ADVOCACY
GROUPS OF DEVELOPMENTALLY DISABLED ADULTS

presented by

Jhon Sidney Rowlson

has been accepted towards fulfillment
of the requirements for .

DQQIQIal__Jkgmfin Ed. Adm. and Curr.

Major professor

 

 

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THE DEVELOPMENT, IMPLEMENTATION AND FIELD-TESTING OF
INSTRUCTIONAL MATERIALS TO TRAIN SERVICE PROVIDERS
AS ADVISORS T0 SELF-ADVOCACY GROUPS OF
DEVELOPMENTALLY DISABLED ADULTS

BY

John Sidney Rowlson

A DISSERTATION

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

DOCTOR OF PHILOSOPHY

Department of Educational Administration and Curriculum

1982

Copyright by
John Sidney Rowlson

1982

ii

ABSTRACT
THE DEVELOPMENT, IMPLEMENTATION AND FIELD-TESTING OF
INSTRUCTIONAL MATERIALS TO TRAIN SERVICE PROVIDERS

AS ADVISORS TO SELF-ADVOCACY GROUPS OF
DEVELOPMENTALLY DISABLED ADULTS

BY

John Sidney Rowlson

The developmentally disabled presently lack resources
to effectively advocate for themselves. Service providers
are those who work directly with the disabled and are in a
position to advise the mentally retarded as self-advocates.
The self-advocacy group provides a forum for the learning
and development of self-advocacy skills. Self-determination
is a philosophical and psychological referent of the princi-
ple of normalization that provided an ideological framework
for this project.

A review of the literature demonstrates the need for
instructional materials designed to train service providers
as advisors.

Three major tasks were identified: Product Development,
Product Implementation and Product Evaluation. Product
Development included the identification of content and
organization of content into a Module Package. Product
Implementation included the selection and training of ser-

vice providers as advisors to self-advocates. Product

John Sidney Rowlson

Evaluation included the development of an evaluation plan,
development of instrumentation, data collection and data
review.

Expert opinion was sought to identify the content. A
National Survey of self-advocacy advisors was conducted.

The results of the survey were used in a workshop of ad-
vocates and self-advocates to refine the content. A module
format was chosen for organizing the instructional materials.
Six modules were developed, with each module organized
around a central theme. The six modules comprised the
module package.

Fifteen service providers from two agencies that serve ‘
the needs of the mentally retarded in the Lansing, Michigan,
area participated in the field-testing of the Module
Package. The Module Package was implemented in six presenta-
tion sessions. Each presentation session corresponded to a
module.

A number of data sources were designed to field-test
the instructional materials. A Pre-test/Post-test was
developed to measure content knowledge. Each module con-
tained an Assessment Sheet, an Impact Questionnaire or
Skill Development Checklist and a Module Evaluation Sheet.
Other data sources included: anecdotal records, a partici-
pant observer, with each presentation session tape—recorded.
A Follow-up Interview was conducted with each trainee.

A Process Review was conducted with data from the

presentation sessions to determine the congruence between

John Sidney Rowlson

the module intents and the presentation session occurrences.
An Outcome Review was conducted to determine the contingen-
cies between the antecedents and outcomes and to determine
the congruence between the outcome intents and occurrences.
The intent of the review processes was to determine recom-
mendations for product revision.

The results of the Process Review indicated that the
presentation sessions occurred as intended, suggesting
congruence. Discrepancies of the transaction intents and
occurrences when they appeared, were due to time constraints,
excessive testing and the desire of trainees to include con-
tent that was beyond the intended scope of the presentation
session.

The results of the Outcome Review indicated that
four of the ten trainees contacted in Follow-up Interviews
were involved with self-advocacy groups. All trainees re-
ported that they had promoted self-advocacy with at least
one developmentally disabled person and sought to encourage
co-workers to embrace the concept of self-advocacy.

Recommendations for Product Development, Product
Implementation and Product Evaluation were identified. A

number of research needs were discussed.

DEDICATION

To "Millie"

iii

ACKNOWLEDGMENTS

I wish to express my appreciation and gratitude to
all those who were involved in this project.

This endeavor would not have been possible without
the support and wisdom extended from my Doctoral Committee.
The magnitude of time, effort, energy and support given by
Dr. Donald Burke, Dissertation Advisor, was greatly appreci-
ated. Dr. Ben A. Bohnhorst, Doctoral Committee Chairman,
who has provided support and warmth; thank you for your
gifts. Dr. Ralph E. Kron, who has been kind and compassion-
ate; thank you. Dr. Richard E. Gardner, who has provided
an inspiration for leadership; your strength was welcomed.

Administrators of Programs for the Mentally Retarded
provided me an opportunity to be innovative, for which I am
grateful. Mrs. Rita Charron, Program Director, has continu-
ally advocated to provide quality services for the develop-
mentally disabled. Mr. Daniel DeVaney, Coordinator, has
been an advocate for this project and has opened many doors
for self-advocates. Ms. Judith Touzeau, Supervisor of
Bretton Square Industries, who is sensitive to the needs of

self-advocates.

iv

The staff at Bretton Square Industries have supported
self-advocacy as an integral part of the program. Thank
you, Mr. Eldon Hall, Ms.Elaine Grogran, Ms. Sandra Dilley,
Ms. Debora Possehn, Mrs. Myrne Montgomery, Mr. Paul Doak,
Ms. Nadyne Allston, Mr. Chris Shumway, Ms. Connie Fletcher,
Mr. Ralph Pea, Mrs. Nancy Wireman, Mrs. Lorraine LaCourse,
Ms. Carol Williams and Mr. Rick Beemer.

Sincere appreciation is extended to members of People
First of Michigan and the Bretton Square Board, Ms. Lee
McDonald, Mr. William Premoe, Ms. Holly Isgan, Ms. Terry
Bogart, Ms. Marilyn Walters, Mr. Ed Mettars and Mr. Dan
Hatfield. They have repeatedly demonstrated their capacity
to lend meaning and direction to their lives.

A heart filled thank you is offered to Dr. Mary Howard.
Her effort as the participant observer has added meaning to
this project.

The cements and suggestions from those who responded
to the National Survey, those who participated in the
Advisor Workshop and those concerned service providers who
participated in the field-test were greatly appreciated.

Loving appreciation is ever present for Ms. Carmen
Dykema, my wife, and the joys of my life, Jonathon,

Matthew and Ahna.

TABLE OF CONTENTS

CHAPTER PAGE

ONE INTRODUCTION AND REVIEW OF LITERATURE . . . 1

O
O
H

Background . . . . . .
Review of Literature .

k

Me

Philosophical Issues . . . . . . . . . 4
The Stigma of Being Labe led en tally
Retarded . . . . . . . . . . . . . . 4
Normalization . . . . . . . . . . . . . 7
Phenomenological Perspective . . . . . 7
Self-Determination . . . . . . . . . . 11
Social Movements . . . . . . . . . . . . 11
Self-Help Groups . . . . . . . . . . . 11
Advocacy and Self-Advocacy . . . . . . 14
The Advisor to Self— Advocates . . . . . . 19
The Need for Advisors . . . . . . . . 19

The Advisor as a Facilitator of

Learning . . . . . . . . . . . . . . 20
The Advisor as an Organizer Within

an Agency . . . . . . . . . . . . . . 23

The Service Provider as the Advisor . . 27
The Need for Instructional Materials . . 29
W0 PROCEDURES 0 O O O O O C O O O O O O O 0 3 2

Project Design . . . . . . . .
Methodology . . . . . . . . . .
Product Development . . . . .
Identification of Content . .
National Survey of Advisors

Advisor Workshop . . . .
Instructional Format . . .
Product Implementation . . . .

Selection of Trainees . . . .
Schedule of Training Sessions
Product Evaluation . . . . . .
Evaluation Plan . . . . . . . .

O O I O O I O O O O O O
(.0
on

Data Collection Instruments . . . . 53
Data Collection . . . . . . . . . . . 57
Module Evaluation Data Collection . 57
Module Package Data Collection . . 58
Review of Data . . . . . . . . . . . 59

vi

CHAPTER

THREE

RESULTS 0 O O O O O O O O O O O O O O 0

Process Review Data . . . . . . . . . .

Module I Occurrences - Session I . .
Module I Congruence of Presentation
Intents and Occurrences - Session I
Module I Impact Questionnaire —
Session I . . . . . . . . . . . . .
Module I Evaluation Sheet - Session I
Module I Occurrences - Session II . .
Module I Congruence of Presentation

PAGE
, 61
. 61
. 61
. 63
. 64
. 65
. 66

Intents and Occurrences - Session II. 68

Module I Impact Questionnaire -
Session II . . . . . . . . . . . .
Module I Module Evaluation Sheet -
Session II . . . . . . . . . . . .
Module II Assessment . . . . . . . .
Module II Occurrences . . . . . . . .
Module II Congruence of Presentation
Session Intents and Occurrences . .
Module II Skill Deve10pment Checklist
Module II Evaluation Sheets . . . . .
Module III Assessment Sheet . . . . .
Module III Occurrences . . . . . . .
Module III Congruence of Presentation
Session Intents and Occurrences . .
Module III Advisor Skill Checklist .
Module III Evaluation Sheets . . . .
Module IV Supervisory Attitudes: The
X-Y Scale . . . . . . . . . . . . .
Module IV Occurrences . . . . . . . .
Module IV Congruence of Presentation
Session Intents and Occurrences . .
Module IV Impact Questionnaire . . .
Module IV Evaluation Sheets . . . . .
Module V Assessment . . . . . . . . .
Module V Occurrences . . . . . . . .
Module V Congruence of Presentation
Session Intents and Occurrences . .
Module V Impact Questionnaire . . . .
Module V Evaluation Sheets . . . . .
Module VI Assessment . . . . . . . .
Module VI Occurrences . . . . . . . .
Module VI Congruence of Presentation
Session Intents and Occurrences . .
Module VI Impact Questionnaire . . .
Module VI Evaluation Sheets . . . . .

outcome RGVieW Data 0 o o o o o o o o o
Pre-Test/Post-Test Occurrences . . .
Follow-up Interview Occurrences . . .

vii

. 68
. 69
. 71
. 72
. 74
. 75
. 76
. 77
. 79
. 80
. 81
. 82
. 83
. 84
. 85
. 86
. 88
. 89
. 90
. 92
. 93
. 94
. 96
. 97
. 98
. 99
. 101
. 102
. 103
. 103

 

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CHAPTER

FOUR

PAGE

SUMMARY, DISCUSSION, RECOMMENDATIONS FOR
REVISIONS AND IMPLICATION . . .,. . . . . 112

Summary . . . . . . . . . . . . . . . . . 112
Product Development . . . . . . . . . . 112
Product Implementation . . . . . . . . 113
Product Evaluation . . . . . . . . . . 113
Results Of Product Evaluation . . . . . 115

Discussion . . . . . . . . . . . . . . . 116
Philosophical Issues . . . . . . . . . 116

'Social Issues . . . . . . . . . . . . . 116
Role Of Advisor . . . . . . . . . . . . 118

Recommendations For Product Revision . . 113
Product Development . . . . . . . . . . 120
Product Implementation . . . . . . . . 123
Product Evaluation . . . . . . . . . i3;

Implications For Future Research .

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

LIST OF FIGURES . . . . . . . . . . . . . . . . . X

BIBLIOGRAPHY . . . . . . . . . . . . . . . . . . . 134

APPENDIX

A. National Survey of Advisors . . . . . . . . . 140

B. Letter Of WOrkshOp Intent . . . . . . . . . . 147

C. Workshop Packet . . . . . . . . . . . . . . . 150

D. Module Package . . . . . . . . . . . . . . . 175

E. Site Interest Survey . . . . . . . . . . . . 209

F. Pre-Test/Post-Test . . . . . . . . . . . . . 213

G. Follow-up Interview Format . . . . . . . . . 217

viii

LIST OF TABLES

TABLE PAGE

1. Selection of Trainees . . . . . . . . . . . . 47

2. Module I Evaluation Sheet Session I -
With Results . . O C C . . . C . O O C C . 65

3. Module I Evaluation Sheet - Session II - _
With RESUltS o o o o o ‘0 o o o o o o o o o 70

4. Module II Evaluation Sheet - With Results . . 76
5. Module III Evaluation Sheet - With Results . 82
6. MOdule IV Evaluation Sheet - With Results . . 88
7. Module V Evaluation Sheet - With Results . . 94
8. Module VI Evaluation Sheet - With Results . . 101

9. Self-Report Theme Application . . . . . . . . 111

ix

LIST OF FIGURES

FIGURE PAGE
1. PrOject DeSign O O O 0 O O O O O O 0 O 0 O O 34
2. Content Themes . . . . . . . . . . . . . . . 42

3. Stakes Model For Descriptive Evaluation . . . 51
4. Descriptive Data Sources . . . . . . . . . . 52

5. Process Review of Module Package Instruments
as Applied to Stakes Data Matrix . . . . . 54

6. Outcome Review Of Module Package Instruments
as Applied to Stakes Data Matrix . . . . . 56

CHAPTER ONE

INTRODUCTION AND REVIEW OF LITERATURE

Background

 

The civil rights movement sought tO enfranchise those
minority groups previously limited in their participation
in the democratic process. The disabled have organized
ways similar to ethnic groups to increase acceptance and
participation in our democratic society. The developmental-
ly disabled, a silent minority (Kramer, 1980), continue to
struggle against social myths and prejudice, so they too
can live more normal lives (Wolfensberger, 1972). Self-
advocacy is the act Of the developmentally disabled speak-
ing on their own behalf as they seek to gain and exercise
their rights.

The principle Of normalization is an ideology that has
the role of guiding human management service systems tO
create conditions for the developmentally disabled that are
as normal as possible (Wolfensberger, 1972). Self-deter-
mination is a philOSOphical and psychological referent
included in normalization. Under this principle, consumer
groups, self-advocacy groups and human service managers
work together to bring about normalizing self-determining.

cOnditions. Self-advocacy groups are normalizing because

it is socially normal for groups Of people with similar
living and working conditions to form groups and promote
their own self-interest.

In general, the developmentally disabled lack resources
to effectively advocate for themselves. Service providers
are those who work directly with the disabled to be self-
advocates. Service providers can Open human service systems
to increase Opportunities for self-advocacy through consumer
participation.

Sophisticated training materials and consultation
capabilities are necessary in preparing self-advocates to
protect their rights and represent themselves (Menolascino,
1978). People with mental limitations can learn to make
judgments and decisions for themselves (Haskins with Stifle,
1980). They can be trained to vote, understand their rights,
and develop self-advocacy skills (Herr, 1980). Self-advoca-
cy groups provide a forum for the learning and development
Of self-advocacy skills, and Offer an Opportunity to partici-
pate in self-governance. The self-determination gained
while asserting rights and assuming responsibility is gOOd
pedagogy and therapeutic (Nirge, 1972; Krugel and Shearer,
1976).

Professionals and other service providers will need to
work with self-advocacy groups and service delivery systems
in encouraging self-advocates to participate in the planning

and delivery Of services (Warren, 1979; Varela, 1978).

 

 

Helpers, counselors, consultants can advise self-advocacy
groups in organizing themselves "... to participate in the
governance Of the social agencies created for their benefit"
(Herr, 1980, p 10). Woodyard (1980) has highlighted the
need Of having advisors to assist in the development of
self-advocacy groups. TO meet this need, inservice train-
ing, staff development, consultation, materials and
resources must be expanded (Stedman and Wiegerink, 1979).

Freire (1970) discussed entering into a dialogue with
the oppressed as a precondition to developing an educational
program for their liberation. An example Of this occurred
at a work activity center. Four workers entered into a
dialogue about starting a union. As a result of these
interactions, activity was initiated to answer these ques-
tions: Why are we treated differently? What are our
rights?

An organization was founded and an election to select
Officers was held. The indigenous leaders became recog-
nized. They had to learn new roles, tasks, and duties as
Officers of their organization.

The experience of working with "The Board" (as they
refer to themselves) provided the background and orientation
to gain an appreciation Of the need for additional training
and instructional materials for those who will work with
the mentally retarded as they seek their voice in gaining

power and control over their lives.

The general purpose Of this project was to develop
instructional materials to be used in the training of
service providers as advisors to self-advocates. In order
to accomplish this general purpose the following three
major goals were identified. Namely:

To design and develop instructional materials;

TO implement these materials in a field test;

To examine these instructional materials for product

revision.

Review Of Literature

Philosophical Issues

The Stigma of Being Labeled Mentally Retarded

Three per cent Of the population, for a variety Of
reasons, fall significantly below the norm in intelligence
and adaptive behavior (Farber, 1968; Blatt, 1977). These
persons have been labeled by society as developmentally
disabled, mentally retarded, mentally deficient, or mentally
impaired. Labeling stigmatizes individuals leading to
persons being devalued (Farber, 1968). When a group Of
people are devalued by society they are dehumanized result-
ing in a restriction of rights, freedoms or Opportunities
(Farber, 1968; Wolfensberger, 1972). Labeled mentally
retarded adults become alienated, restricted, and their

Options limited (Blatt, 1977).

A "monolith" Of education and mental health has been
created and sustains itself because Of a lack of alterna-
tives. The "monolith" involves a network Of seemingly Open,
but actually closed systems, reflecting a limited vision Of
human potential and possibilities (Blatt, 1977).

The term "mental retardation" as an administrative
term has "... little if any scientific integrity." (Blatt,
1977, p. 20). Blatt goes on to say that in 1973 the
Grossman Committee revised the American Association on
Mental Deficiency definition of psychometric retardation
from one to two standard deviations from the mean. Psycho-
metric retardation is essentially 75 I.Q. or less, or
approximately three percent of our total population.
Administrative retardation is that percentage of the
population who at any point in time need or is known to
need services, or approximately one percent (Blatt, 1977).

Neglect, lack Of resources, segregation, and dehuman-
izing conditions represent the consequences Of a closed
system regarding the potential Of people to learn. This
closed system reinforces the social myth Of the retarded
as a deviant population that must be controlled and managed.
This self-fulfilling prophecy has a long historical prece—
dence (Blatt, 1977), but is not substantiated by empirical
evidence which, based on current practices and technologies,
have shown that people labeled mentally retarded can learn
and grow as human beings (Wolfensberger, 1972; Blatt,

Biklen, and Bogdan, 1977; R003, no date).

There is literature identifying some of the problems
Of community placement. "Dumping", lack Of coordination
of services, neglect, abuse, or community resistance have
been reported (Halpern, Sackett, Binner, and Mohr, 1980).
The alternative.is not to maintain institutions because of
the problems Of community placement, but to continue to
develop alternative residential, vocational, recreational,
social and democratic Options (Steer and Jennings, 1976).

The insiders view Of being labeled and experiencing
institutional life is quite revealing. Their memories and
stories of experiences while institutionalized describe a
barren, demeaning and brutal world (Bogdan and Taylor,
1976; McIndless, 1978). The impact of labeling and in-
stitutionalizing creates a stigma and for some may be a
life long issue that is difficult to overcome (Edgerton
and Bercovici, 1976).

The Edgerton and Bercovici (1976) study suggested a
difference when defining social adjustment; the researchers
and program planners, or the persons who have been labeled.
There appears to be a variety of criteria with the profes-
sionals seeking competence and independence while those
labeled and studied found confidence and a sense Of well-
being to be more important. Edgerton and Bercovici (1976)
go on to suggest that "... we should listen tO retarded

persons when they tell us about their lives." (p. 496).

Normalization

 

Normalization is an ideology used tO guide human
service system managers in planning and conducting their
agency services and programs. Simply stated, the principle
of normalization is the creation of conditions for the
developmentally disabled that are as normal as possible
(Wolfensberger, 1972).

Conditions need to be created for the mentally
retarded that enable them to participate as citizens in a
democratic society. Personal planning, decision making,
and goal setting are socially normal adaptive behaviors.
VOting, organizing and lobbying are normal democratic
behaviors. Speaking on ones own behalf in ones own best
interest is a fundamental democratic principle and has a
strong historical precedence.

The principle of normalization suggest that human
service systems develop an Open view Of learning, growth
and human potential. A way for human service personnel
to gain an Open view is to accept Edgerton and Bercovici's
(1976) suggestion and listen to the mentally retarded.
This can lead to developing a perspective Of their world

as they see it.

Phenomenological Perspective
Service providers, administrators, families, home

operators and others are gaining the perspective that

given access, a person with mental retardation can function
as an equal in the planning and delivery Of services (Varela,
1977). Advocacy involves the interaction of individuals

and systems, or agencies. "From an individual perspective,
advocacy involves acting on behalf Of or pleading the case
for another. An advocacy perspective starts with the
client and attempts to examine services through the eyes

Of the client." (Neufeld, 1979, p. 45).

Phenomenology is a philosophical foundation Of the
disciplines Of anthrOpOlogy, sociology, and various
approaches to psychology and education. It "... concentrates
on the field of constituted human meanings" and brings into
question the "... origin, development, structure, and
sedimentation Of belief contexts as they impinge upon human
action." (Ihide, 1977, p. 143). Through this perspective
the issues, beliefs, actions and lives Of this minority can
be understood. It is a perspective which attempts to
view behavior from the persons own frame of reference, and
examines how people experience their world. Reality is in
onés own mind. The concept Of mental retardation is dif-
ferent for those who are doing the labeling, than for
those who have been labeled (Taylor and Bogdan, 1977).

Understanding mental retardation in phenomenological
terms requires a suspension or bracketing of onés own
assumptions and beliefs (Taylor and Bogdan, 1977). Mental
retardation is a social creation based on artificial

distinctions and commonsense understandings that perpetuates

a mythology. Socialization and enculturation tend to
reinforce these myths. The service provider or anyone
else involved in the field of mental retardation needs to
examine and transcend their assumptions which are based
upon their socialization. Failure to do so results in
perpetuating the dependency of those with whom one is
working (Goldenberg, 1978; Turnbull and Turnbull, 1979).

As part Of an oppressed minority many Of those
labeled mentally retarded have adopted the myths of the
society. Due to social expectancy, the vicious circle is
completed in a self-fulfilling prophecy contributing to
the myths described by Wolfensberger (1972).

In order to change this situation the consumer must
be viewed with respect, dignity, and as a human being who
is valuable. Consultation, collaboration and cooperation
between the consumer and the service provider is the
strongest position to work from, with an increased poten-
tial for positive results (Warren, 1979).

Although many professionals guard their territory
from intrusion by the consumer, others seek consumer
participation in planning and delivery of services. An
unwillingness to listen may convey to the consumer that
the service provider considers the consumer incompetent.
Professional ignorance about the value Of consumer partici—
pation could produce the same effect, the consumer as a

self-advocate may need to educate the professional (Warren,

10

1979). The service provider must be flexible, Open minded
and capable of growth to appreciate the growth of others
(Wolfensberger, 1972).

A phenomenological approach to education is involved
in the practices of Freire (1970). He describes a process
Of developing a curriculum among illiterate people. The
process is based on assumptions regarding oppression and
the dehumanizing conditions Of the people with whom he
worked. He sought to liberate and not perpetuate Oppression.
The process Of developing educational programs and bringing
about liberation is similar to the process described by
the founders Of People First (Freire, 1970; Heath, 1977;
Heath, Schaaf, and Talkington, 1978).

The process begins with the derived meanings of words.
For the self-advocate, mental retardation is a concept that
carries a heavily value laden meaning. The advisors,
helpers, organizers or advocates take the position of
being in communion with the people. This is a different
position than teacher, therapist, social worker, "boss",
parent, etc., which Often maintains dependency, and can "
become a form of Oppression, manipulation and dehumanization
(Freire, 1970). The growth process relies on the psycho-
logical referent Of self—determination (Freire, 1970;

Goldenberg, 1978; Nirge, 1969).

11

Self-Determination

Self-determination is the ability to control the
basic conditions under which survival takes place
(Goldenberg, 1978). Rank (1956) defined "... self-deter-
mination as a voluntary and conscious creating Of one's
own fate." (p. 20). Assertiveness, problem solving,
decision making and self-disclosure are the skills needed
by the self-advocate in determining and influencing the
direction Of life. The value of respecting a person's
right to self-determination has pedagogic value. The
therapeutic value Of an improved identity and increased
independence has been noted (Heath, 1977).

Self-determination is a social value for one who
hopes to gain respect as a citizen, creating a more com-

plete democratic society (Nirge, 1972).

Social Movements

Self-Help Groups

 

The self-help movement emerged in the 1930's when
parents of the mentally retarded began to create alterna-
tives to institutionalization (Stunman, Trunstein, 1976).
The formation Of groups of parents Of handicapped children
began "... as a spontaneous reaching out Of parents to
one another, eager to share their similar problems and

concerns." (Segal, 1970, p. 4). There was a perceived

12

failure Of society's institutions to provide care and
social support for the needy and stigmatized (Katz, Bender,
1976). Parents, friends and concerned professionals began
meeting to discuss problems and develop ways of coping
with their concerns (Segal, 1968).

Through the 1930's and early 1940's parent groups
focused on Obtaining services for severely and mentally
retarded children. In 1946 these groups expanded their
concerns to encompass all retarded children. The American
Association on Mental Deficiency, the only professional
organization at the time interested exclusively in mental
retardation, invited members Of parent groups to it's
annual meetings in 1947 and 1949 (Segal, 1970). The
National Association for Retarded Children was incorporated
in 1953 (Segal, 1970).

Meanwhile, special-interest groups representing many
disabilities increased the visability Of the disabled,
heightened public awareness, and helped to destigmatize
disability making it less threatening to the public. The
formation of these groups paved the way for support Of
public serVices and a movement toward full citizenship
for the disabled (Haskings with Stifle, 1980).

The civil-rights movement Of the 1960's, the War on
Poverty, the Vietnam War, the youth counter culture and
the Woman's Movement further supported the effort of these

groups. National attention was on the effects of prejudice,

13

discrimination, segregation and economic deprivation.
People believed that these conditions contributed to a
denial Of basic human and legal rights tO minorities,
including the handicapped (Haskin with Stifle, 1980; Katz,
1976).

A new breed Of activist emerged inthe 1970's as more
and more of the disabled began speaking out. Vietnam
veterans did not accept the role Of the handicapped person
staying at home behind closed doors. An increased mili-
tancy developed on the part of the handicapped with the
perception Of being "the next minority." (Haskins with
Stifle, 1980, p. 8).

The activism Of the disabled, and consumer groups
has resulted in victories in the courts and legislation.
The Developmentally Disabled Assistance and Bill Of Rights
Act Of 1978 (PL 95-602), the Rehabilitation Act Of 1973
(PL 93-112), the Education for All Handicapped Children
Act Of 1975 (PL 94-142) are some Of the major federal
legislative achievements. Some Of the litigation that
led to legislative action was Brown vs. Board of Education
(1954), Wyatt vs. Stickney (1970), PARC vs. Commonwealth
Of Pennsylvania (1971), Lessard vs. Schmidt (1972), Mills
vs. Board Of Education Of District Of Columbia (1972), and
Morales vs. Turman (1976) (Haskins with Stifles, 1980).

It is beyond the scope of this review tO discuss the
legal and legislative actions that have involved the dis-

abled. The intent is to show how disabled persons, friends,

 

 

14

advocates and professionals have joined forces in a national
disabled rights movement to gain full and equal citizen-
ship for all the disabled.

The values inherent in these laws are consistent with
those in the Normalization Principle which stresses the
value Of handicapped persons being able to live as much
like the rest Of society as possible (Kramer, 1974;
WOlfensberger, 1972). Conditions are being created where
disabled persons experience the respect entitled any

human being (WOlfensberger, Nirge, 1972).

Advocacy and Self-Advocacy

 

Members Of the advocacy movement believe in the need
tO provide resources to people with developmental dis-
abilities in order to establish their first class citizen-
ship. Advocates are those persons who intend to assist,
represent and advise, regarding the rights, interests, and
needs of people with disabilities (Addison, 1979). Ad-
vocates attempt to bring about social justice for those
who have been or represent the potential to be treated
unjustly. The advocatels goal is tO provide the kind Of
involvement that results in persons becoming self-advocates.
Their focus is on facilitating the learning Of self-advo-
cacy skills for an independent as possible life style for
the developmentally disabled (Dybwad, 1980; Neufeld,
1979).

15

The Developmentally Disabled Assistance and Bill Of
Rights Act Of 1978 (PL 95-602) provides the framework for
an advocacy movement known as the developmental disabili-
ties movement, which seeks tO assure developmentally dis-
abled citizens their human rights and needed services.
One of the goals Of this movement is "... tO provide
access for consumers to decision making that determines
what they receive and when." (Wiegerink, 1979, p.37).

The consumer has a role in planning and delivery Of
services designed to benefit them (Warren, 1979). These
legal and legislative mandates represent a convergence
Of theory and practice Of the social science disciplines
Of Law;Anthropology, Sociology, Education and Psychology
(Katz, 1976).

Varela (1977) discussed three themes Of the self-
advocacy movement. The first theme states that the human
service system tends to view the problems Of education,
housing, jobs and transportation as defects Of the client.
The movement views the problems Of access and unequal
distribution Of benefits, as environmental and social
requiring legal and legislative action. The second
theme charges that human service personnel tend to see
only disabilities, not potential, and Show a keen interest
in behavior modification rather than affirmative action.
The attitudes Of service providers toward their clients

may become more negative as years pass, resulting in

16

lowered expectations and perpetuating low levels of
success and employment. A third theme emphasizes the
dignity and self-determination that arises out Of self-
help. Peer counseling, assertiveness training, infor-
mation networks, interest in civic and legislative
matters are the tools Of the self-advocate.

According to Hallgren and Norsman (1977):

"Self-Advocacy is that component Of the advocacy

movement which is directed toward increasing the

knowledge and understanding of basic human/civil
rights and responsibilities and is a pre-condi-
tion to meaningful citizenship." "Self-Advocacy

is defined as advocacy by an individual whose

rights, interests or needs are at risk Of being

diminished, in order to represent his/her own
rights and interests and speak on his/her own

behalf." (p. 1).

Asserting one's personal rights involves expressing
thoughts, feelings and beliefs in direct, honest and
appropriate ways which do not violate another person's
rights (Jakubowshi, 1976). Assertive behavior by persons
seeking their rights are the interpersonal skills Of the
self-advocate. The skills needed at this level Of com-
munication require ability to be interpersonally honest
and to have enough self respect to trust and express
thoughts, feelings and beliefs. Appropriate assertiveness
is learned; a social context for the learning to take
place is required. Individuals become socialized by

being able to communicate and relate with Others in

society. The disabled learn in this process to speak

 

 

17

for themselves, be involved in making decisions about
their lives, participate in determining their own direction
and request needed services (Nirge, 1972).

There are programs and curricula designed to teach
the law, legal systems (Riekes, Spiegel, Keilits, 1977),
as well as legal rights and responsibilities for the
mentally retarded (Hallgren and Norsman, 1977). Gardener's

Self-Advocacy_WOrkbOOk (1980) and WOOdyard's Advisor's

 

Guidebook for Self-Advocacy (1980), are valuable resources
for self-advocacy groups. Individuals may need the support
and encouragement Of others to be self-advocates. Support
groups provide additional energy, power and resources.
Group experiences can lead to increased motivation, self
respect, and self acceptance-(Katz, 1976) with development‘
of cognitive skills (problem solving, memory retention)
(Freire, 1970) organizational abilities, and leadership
(Heath, 1977).

The development Of effective citizenship is brought
about through the interaction of people facing concrete,
real life problems. The identification self-advocates
have with a site (workshop, home, center, etc.), provides
a context for participation in real life problems (Curtis,
1974). The issues a support group deals with are rele-
vant to their lives and stem from the dynamics Of the
site. The involvement by persons in their own programs

and sites increases their skills as self-advocates through

18

participatory democracy. A sense Of efficacy, competence,
and personal power is developed and strengthened as self-
advocates participate in meetings and committees, through
defining group purposes and goals, choosing leaders, plan-
ning activities, and providing one and another emotional
support.

Many minority groups have organized to communicate
their cause to the public in the hope Of gaining equality.
The "Silent Minority" (Kramer, 1974) are those develop-
mentally disabled and mentally retarded persons who have
been denied many basic human or civil rights. The
organization Of the mentally retarded into support groups
and coalitions is a way to achieve self-representation
and gain more direct access to needed services (Menolascino,
1978).

In 1968 and 1970, the Malmo Congressescfiithe mentally
retarded were held in Sweden. Issues Of these conferences
included: leiSure programs, labor unions, social clubs,
work opportunities and the frustration about not being
allowed to make decisions.

In 1974 two staff and three residents from Fairview.
State Hospital and Training Center in Oregon attended a
meeting in British Columbia billed as the "First Conven-
tion for Mentally Handicapped in America." These people

returned and began organizing their own convention. The

 

 

 

 

19

result of this effort was the creation of People First,
an organization of people who (as the name implies) wish
to be known and seen as human beings.
"Treat us as People First, then consider our
handicaps; deal with our talents and positive

features instead of just our disabilities."
(Heath, Schaaf and Talkington, 1978, p. 6).

The Advisor To Self-Advocates

The Need for Advisors

 

A critical role is performed by those who assume the
responsibility to advise and facilitate the development
Of self-advocates and self-advocacy groups. Self-advocacy
groups of physically disabled people usually have the
knowledge and skills needed to Operate their own group
and do not need an advisor. However, most groups Of
mentally retarded people do need advisors (Woodyard, 1980)
until the group has grown to become independent when the
advisor is no longer needed.

The skills and knowledge needed to be a participating
citizen in a democracy are learned. Voting on issues,
electing Officers, planning and conducting meetings,
speaking in public, identifying and discussing issues,
and solving problems of a group, are examples of the
activity that take place when a group forms and develops.

"It is now generally recognized that the majority of the

 

 

20

mentally retarded when properly counseled and instructed
are able to make judgements and decisions for themselves."
(Haskins with Stifle, 1980, p. 126).

The advisor is a resource person who has knowledge
Of normalization, group process, service resources, human
and legal rights for the disabled. Listening and group
. facilitation skills are needed to insure effective com-
munication and empathy. Community placement, personal
choice, and self-determination are beliefs Of advisors
(WOodyard, 1980).

Self-advocacy is a felt need, one that emanates from
the person and is expressed when people self-disclose the
conditions of their lives. Not all people have a need or
desire to be self-advocates, to vote, to join unions or
clubs, or to participate in meetings. Many citizens do
not participate in the democratic process, yet, all can
choose to do so because participation in the democratic
process is "normally".avai1ab1e. Unfortunately, "One of
the most fundamental democratic rights routinely denied
the mentally retarded is the right to vote..." (Haskins

with Stifle, 1980, p. 125).

The Advisor as a Facilitator of Learning

 

The function of an advisor is to be responsive to
the felt need of self-advocates. An advocate would speak

for the disabled person. An advisor would provide the

21

opportunities for the disabled persons to speak for

themselves. An example of the distinction may be helpful.

A woman assigned to a work activity center lost a
tooth from her upper plate. She went to her home
Operator and case manager to see if she could have
her plate fixed. The matter was unresolved for a
year. A second tooth fell out Of her plate.
During a group counseling session, the woman ex-
pressed a desire to have her teeth fixed. The
therapist heard her request as something she could
do for herself rather than advocating or speaking
for her. The woman agreed tO this approach and
indicated that she wanted her teeth fixed within
three months for her sister's wedding. The group
being counseled became very supportive of her
."getting her teeth fixed" and proceeded to Offer
suggestions. The woman involved her case manager
and the home was called. The home Operator ex-
plained why her teeth had not been fixed, using
the ”defect in the client theme” (Varela, 1977),
thus thwarting the case manager. A new plan was
developed where the woman would "bug" the home
Operator and the case manager about her teeth.
After two weeks a dental appointment was made,
but the dentist pointed out that work could not
be done until the woman cleaned her plate. Once
again, the defect was in the client. A third
tooth fell out. She continued to explore, with
the group, other Options. However, she did not
mention her teeth for three weeks. Her silence
on the topic was respected. One day she quietly
smiled a toothy smile during the group meeting
and congratulations were given. She got her
teeth fixed three weeks before the wedding.

This example brings out the key issue for service
providers who believe in advocacy and desire to see
people become their own self-advocates. The service
provider is in a position to intervene. A choice is made
between doing something for a person or assisting a person

to do something for themselves. Taking care Of a person

is different than caring for a person.

 

 

22

Rogers (1969) has discussed some principles and
assumptions Of learning. He points to the value Of self-
initiated, self-directed learning. This is the kind Of
learning that starts from within the person as that person
struggles with life. There is a fundamental human need
and continuous search for personal adequacy. The moti-
vation is always there, as the person is always seeking
the maintenance and enhancement Of their perceived self.
They are trying to do the best they can to be adequate.
"From the point Of view of the behaver himself, he is
never unmotivated...even though it may seem so from an
outsidefs point Of view." (Combs and Snygg, 1959, p. 56).

The advisor as a facilitator Of learning must
transcend the teacher-student relationship and develop a
subject relationship. The interaction develops in a learn-
ing environment with advisor and self-advocate as teachers
and learners, learners and teachers, learners and learners.
The self-advocate is perceived as a subject who is active,
not a passive object to be treated, taught, programmed
and processed (Freire, 1970; Freire, 1978; Varela, 1977).
As an active learner, the self-advocate is responsible
for learning.

The advisor must be sensitive to the various forms
Of communication that indicate a need and interest in
self-advocacy. The perception and expression of a need

for self-advocacy skills may be masked because of personal

23

and environmental factors. A person may learn that
efforts will not be taken seriously resulting in learned
hopelessness and helplessness (Halpern, Sackett, Dinner
and Mohr, 1980). The lack Of alternatives, a restricted
life situation and people doing things for the person
rather than allowing for a dignity of risk (Perske, 1972)

all contribute to difficulties in seeking self-advocacy.

The Advisor as an Organizer Within an Agency

 

WOOdyard (1980) discussed the advisors relationship
to the sponsoring organizations management. The service
provider as advisor acts as a liaison between the self-
advocacy group and management. Managers historically have
made decisions for those they have served and focused
their attention on the disabled person's limitations.

This approach led to over-protection, few Opportunities

for learning responsibility, decision making and practicing
dignity Of risk. In order to overcome these Obstacles and
advance the state Of the art, WOodyard (1980) suggested
Open communication and a willingness on the advisor's part
to educate the managers.

"The principal vehicle for the acquisition Of

goods and power as well as for the development

of self-determination...1ies in the dynamic of

community organization...Community organization

is the mechanism by which previously isolated

and vulnerable individuals band together tO

identify and pursue common goals." (Goldenberg,
1978, p. 108).

24

One role of the advisor is to be an organizer Of the
community of people with whom they are working (Herr, 1980).
The advisor as organizer may need to understand agency
goals and how they relate to self-advocacy. Three types
of goals are considered for analysis. Integrative goals,
the first type, seek improved juxtaposition of service
giver and service users. The second type are socio-
therapeutic goals where the agency seeks tO improve function-
ing or increase competence of citizens through community
participation. The third type are environmental change
goals which aim at the improvement of the environment
within the community (Brager and Specht, 1973).

The goals of the self-advocacy movement can be viewed
through the above classification system.

Integrative goals are likely to promote the
preservation Of the agency. Participation by a self-
advocate in community life is encouraged to promote a
greater ego investment with an internalization of come
munity values and traditions (Brager and Specht, 1973).

This in part explains the effect state wide People First
conferences have on participants (Heath, 1978). Agencies
may seek to beguile participants into believing they have
made an impact when, in fact, plans have been predetermined.
This behavior serves to foster cooperative client sponsor
relations without the transfer Of power (Brager and

Specht, 1973). The responsibility of the advisor is to

 

 

25

effect a transfer Of power to the self-advocates. When
this does not happen, the indigenous leader only serves

a public relations function. The goal is a higher degree
of political integration with cohesion Of service
recipients (Bragen and Specht, 1973).

Sociotherapeutic goals may be questioned because they
Offer psychological solutions to political and systemic
problems (Brager and Specht, 1973). Heath (1977) dis-
cussed the psychological benefits Of People First in
promoting group identity and independence. This growth
may be a prelude to action and social change. The question
Of changing people or changing environments may be a moot
point for those who are hurting. For some, both need to
happen. The individual may change as a result of social
action or may change as a result of promoting social action.
An example may be helpful.

A group of Six workers in a work activity center

confronted a staff person about a telephone policy.

The policy in question stated that if a telephone

call was business, the worker could make the call

without cost. If the call was personal, the

worker would have to pay the cost Of the call ($.07)

The workers felt this was an infringement Of their

right Of privacy and inconsistent with staff policy

regarding their telephone usage.

A staff person listened to the complaint and

suggested they continue to pursue the issue with

the supervisor with the goal of negotiating a

new policy. The leader of the group, a 71 year

Old man who had been previously institutionalized,

but in the community the past seven years, became

anxious. He cried and talked about his fear of
making trouble; that it was better to drop the

26

issue and experience his hurt, loss Of rights

and dignity than to assert himself and hurt
another. The others said they had a right to
assert themselves, Offered him support, encourage-
ment and positive regard. He said he was scared
of being sent back to the institution and feared
this would be a consequence of noncompliance with
the policies Of the program. The group provided
reality checks for him but he was threatened and
unable to accept their feedback. Then one member
said, "O.K., we will do it without you. We have
a right to our privacy." The group "chimed" in
their support Of asserting their rights and were
ready to move without their leader. He realized
that they were serious and would not abandon him
if it got tough. He joined the group and they
worked out a plan and established a new telephone
policy with the supervisor.

In this example, it appears that the leader needed
the psychological benefits the group Offered before he
would be willing to take the risk and move toward attempt-
ing to change an aspect of his situation.

Environmental change goals are criticized because
they may be naive and utopian. They represent the most
radical and far reaching of the goals. In order for these
goals to be realistic they must be set in regard to the
cultural and economic system (Brager and Specht, 1973;
Alinsky, 1971; Freire, 1970).

The principle of normalization seeks to change
society's view of the mentally retarded. The principle
attempts to change society's myths about those labeled
mentally retarded creating more acceptance and integration
into society. The attempt is made to remove the stigma
.Of the. label and the deviant status that the label places

on people (Wolfensberger, 1972).

27

Agencies that utilize the normalization principle
seek to change attitudes and conditions in the community
that will allow for greater acceptance and integration
resulting in the generic use of community services free of
discrimination. The self-advocate plays a key role in
defining and shaping the Objectives sought. This consti-
tutes self-determination in action, a concept of normal-
ization and deeply embedded in democratization of service
agencies (Nirge, 1970; Brager and Specht, 1973). Agencies
that assume an advocacy role realize that rehabilitation
services are nOt enough. The purpose of advocacy is to:
l) assist the disabled person in every way possible to
actualize his potential; and 2) utilize agencies as

advocates to actively participate in improving how society

feels about the disabled (Diamond, 1979).

The Service Provider as the Advisor

 

There are two forms of advocacy; internal and external.
Internal advocacy operates within the system or agency that
employs those acting as advocates, while external advocates
receive their financial support independent from the
systems where they perform their advocacy services. The
advisor to self-advocates provides an advocacy function.
Service providers as advisors perform internal advocacy
activities. A major objection to internal advocacy, and

to service providers acting as advisors, is that there

28

may be a conflict Of interest.between agency goals and
those of the self-advocates. The advisor may not be
objective or view the situation from the self-advocate's
perspective and "cool out" the self-advocates in order to
protect their position within the agency. _The adage,
"Whose bread I eat, his song I sing", points to the dis—
advantage a service provider may experience when develop-
ing advocacy services within an agency (WOodyard, 1980;
Neufeld, 1979).

Another problem of the service provider being an
advisor is that of the consumer differentiating between
the various roles the service provider may perform. For
example, the service provider may be a rehabilitation
worker in a workshop, responsible to train and monitor
worker progress and productivity. In this role, the dis-
abled worker may perceive the service provider as a "boss".
When the self-advocacy groups conduct planning and
decision making sessions, the service provider will need
to be perceived as a friend, helper, advisor, but not as
a "boss". Some consumers and service providers may have
difficulty adjusting to this kind Of role flexibility.

The advantage of the service provider being an
advisor and advocate is that they have greater access to
information and services. Consumers Often live restricted
lives where contact with people outside of the service

delivery system is minimal. The service provider can

29

assist by: bringing disabled persons into the community;
Opening doors to other self-advocacy groups; encouraging
participation in workshops, conferences and conventions;
and ultimately, moving the agency to include more consumer
representatives on its advisory boards (WOodyard, 1980;

Neufeld, 1979).
The Need For Instructional Materials

The process of being labeled mentally retarded in
this highly technological society where intelligence is
valued has resulted in discriminatory and segregationist
policies. Some of these policies have resulted in people
being devalued by society, perpetuating a myth of deviance,
while others are paternalistic in their treatment of the
retarded. Recent developments have led to the creation
Of an ideology that stresses the value Of the potential
for growth and development of the individual.

The advocacy movement seeks to gain respect and
dignity for all disabled people through the Principle Of
Normalization (WOlfensberger, 1972; Nirge, 1976). Self-
advocacy represents the struggle for people to speak for
themselves in making decisions that effect their lives,
and deepens society's commitment toward democratic ideals.

An advisor to self-advocates is needed to pose
questions, make suggestions, develop Options and alterna-

tives so that self-adecates can make their own decisions.

30

Self-advocates may need an advisor until they can Operate
independently. The goal of an advocate and advisor is the
independence of self-advocates. An advisor needs knowl-
edge and skills in order to facilitate learning as they
function as a resource person for a group.

The service provider may act as an advisor.
Functioning in an agency they run the risk Of a conflict
of interest between the service agency and the activities
of self-advocates. Service providers are in a position
of contact and involvement tO encourage and assist in the
promotion of self-advocacy at the service delivery site.
The service provider can work within the system to open
doors and develop self-advocates. Self—advocacy may range
from a person deciding what clothes they will wear each day,
to being on an advisory board and becoming involved in
legislative issues. The responsibility for consumers to
make their own decisions can be encouraged by the service
provider.

Alternative perspectives are needed by service
providers so they can impact and change the service delivery
system. Service providers can assist in changing attitudes
to allow for greater integration of consumers into society
(Steer and Jennings, 1978; Mamula and Newman, 1973; Varela,
1977).

In many programs around the country there are people

ywho have chosen to facilitate the development of

31

self-advocacy; sometimes feeling alone, without a clear
direction. Daily responsibilities and pressures as well
as personal interest and abilities make it difficult for
many service providers to take the time and expend the
energy to search out and discover an advisor advocacy
perspective that would enable them to foster the develop-
ment of self-advocates. Staff development and sophisticated
training materials and resources are needed (Menolascino,
1978). In order for such materials to become available
and useful, research, design, development, implementation
and evaluation must take place prior to dissemination
(Stedman and Wiegerink, 1979).

There are some instructional materials and resources
designed to assist people to become self-advocates (Heath,
1976; Hallgren and Norsman, 1977; Gardner, 1980; WOOdyard,
1980). These materials provide guidelines, direction,
information, and training exercises. However, only por-
tions of these materials are designed to address the train-
ing needs of advisors. Materials have not been developed
that specifically address the training needs of service

providers who desire to become advisors to self-advocates.

CHAPTER TWO

PROCEDURES

Project Design
The general purpose Of this project was to develop
instructional materials to be used in the training of
service providers as advisors to self-advocates. The
goals were:

To design and develop instructional materials;

To implement these materials in a field-test;

To evaluate the instructional materials for
product revision.

Three tasks were planned to accomplish the general

purpose and goals of this project.

1) Product Development included those sub-tasks
and events that led to the instructional
materials package. The sub-task Of Assess-
ment of Need was completed through the events
incorporated in the review of literature and
personal experience. The second sub-task,
Identification of Content was accomplished
through the events of a national survey Of
advisors, an advisor workshop and a synthesis

Of data. The incorporation of an instructional

32

33

format with the content was the third sub-task.
A module format was selected for the organi-‘
zation of content into a module package.

2) Product Implementation included those sub-tasks
and events that led to the field-testing of the
module package. The selection Of trainees was
the first sub-task. The schedule of training
sessions was the second sub-task.

3) Product Evaluation included those sub-tasks and
events that led to recommendations for product
revision. The development of an evaluation plan
was the first sub-task. Instrumentation was
developed for the second sub-task. The third
sub-task was the data collection conducted
during and after the field-test. The final sub-
task was a review. of data to determine recom- -
mendations for product revision.

Figure-l identifies the project tasks, sub-tasks and

events .

Methodology

 

The procedures used to complete the three major tasks,
namely: Product Development, Product Implementation and

Product Evaluation, will be described.

34

Product Development

 

 

 

Assessment of Need

/ \

Review of Personal
Literature Experience

\\\\‘\e ,z””//’

Identification of Content
National Survey Of Advisors
Advisor WOrkshop
Synthesis
Instructional Format

Module Design
I
Module Package

 

 

Product Implementation

 

 

Selection Of Trainees 1

Schedule of Training Sessions

 

Product Evaluation

 

 

 

Evaluation Plan
Develop Instrumentation

Data Collection

I
Analysis Of Data

Recommendations for Revisions

 

FIGURE 1

PROJECT DES IGN

 

35

Product Development

The purpose of the product development task was to
develop instructional materials that could be field-tested.
This task involved two sub-tasks, namely: identification
of content, and the organization Of the content into a

format for the curriculum package.

Identification of Content

This section describes the process used to identify
the content for the instructional materials. The question
raised was: "What content would be useful to train
advisors to self-advocates?" Three events were planned to
answer this question. The first event to identify the
content was a National Advisor Survey.‘ Data from the
national survey were used in structuring the second event,
an Advisor Workshop. The third event was a synthesis of
the data from the survey and workshop into logical cate-
gories including the organization of content by knowledge,
skills and attitudes.

An explanation of the procedures used in each event

follows.

36

National Survey of Advisors

A survey Of self-advocacy group advisors was conducted
to determine the content for the development of instruc-
tional materials. The feedback of advisors from around
the nation was sought to gain their ideas about the skills,
resources, knowledge, principles and perspectives useful
in a training program for self-advocacy advisors.

The Association for Retarded Citizens through the
Office of Protection and Advocacy provided a list of self-
advocacy groups. This list included the names and
addresses of 85 groups from 18 states. A survey package
was sent to all listings.

The survey package consisted Of a letter Of
explanation, a statement of endorsement for the study, a
Position Paper, a bibliography, a Survey Response Sheet
and a Self-addressed stamped envelope (Appendix A.).

The letter of explanation identified the nature and
purpose Of the study. Directions were provided on the
use of the Position Paper and Survey Response Sheet. The
advisors were aSked to read the Position Paper and note
their salient ideas on the Survey Response Sheet.

The Position Paper was a brief review of the
literature including a statement about the need for addi-
tional instructional materials to train advisors. A

bibliography was included with the Position Paper.

37

The Survey Response Sheet had one Open ended question,
namely: "What would be useful in a training program for
advisors of self-advocacy support groups?" Respondents
were instructed to write on the Survey Response Sheet.
The idea of a structured response sheet was discarded be-
cause of potential bias in formulating questions and the
possibility of inhibiting responses.

There were twenty-three respondents to the National
Survey with a return rate Of 27%. The total used
in identifying content was. twenty-one, giving a 24%
utilization rate. Two surveys were received after the
content was identified.

The characteristics Of the respondents included:
seventeen advisors to self-advocates, two self-advocates
and three others.

The National Survey was sent out once. NO attempt
was made to follow—up on non-respondents.

As surveys were returned they were read and the
ideas recorded according to the content Of the idea.
Similar ideas were grouped. As more National Surveys
were received, categories of content became apparent as
the groupings became longer. Different perspectives
within a category were noted for future use.

The ideas, suggestions, perspectives and resources
contained in the body of the National Survey responses

were reviewed two times.. Following a compilation

38

Of all the survey data, the National Surveys were reviewed.
Categories were modified, grouped, changed or dropped as the
original data were re-examined. After reading some Of the
suggested readings, the National Surveys were again reviewed;
thus, providing greater insight into the meaning of some of
the responses.

The results of the survey were used to help identify
the content for the instructional materials. Themes, con-
sistent ideas, advisor issues, additional resources and
materials were sought. This information was categorized
and used in developing a WOrkshop for Michigan Advocates and

Advisors.

Advisor_WOrkshop

An Advisor Workshop Of advocates and advisors from the
State of Michigan was conducted to further identify, develop,
define and refine the content. The survey provided a rich
source Of ideas to which Advisor WOrkshOp participants
reacted.

A potential Advisor WOrkshOp participant was a person
who: 1) had been an advisor to self-advocates for more
than one year; or 2) was an identified advocate for the
disabled, or 3) was a self-advocate.

' Advisors who attended the Second Annual Michigan
People First Conference and advisors who were assisting

>in transporting self-advocates to the planning sessions

39

for the Third Annual Michigan People First Conference were
contacted personally and invited to attend the Advisor
Workshop. Follow-up telephone calls were made over a
period Of several weeks.

Twelve people identified as potential Advisor Work-
shop participants were sent a letter Of workshop intent,
an agenda for the workshop and a map (Appendix B ). The
six who participated in the workshop were from the Lansing,
Michigan,area. They represented different roles along an
advocacy/self-advocacy continuum. The workshop partici-
pants included: a lawyer from the Civil Rights Commission,
the Citizen Advocacy Coordinator for the Michigan Associ-
ation for Retarded Citizens, the Director Of Training for
the Michigan Protection and Advocacy Service for Develop-.
mentally Disabled Citizens, Inc., the Coordinator for
Training for the Greater Lansing Association for Retarded
Citizens, a residential casemanager and a self-advocate.

As indicated above, the results of the National Survey
were used to identify the content Of the instructional
materials. The results were also used to determine the
goals for the Advisor WOrkshOp and the content Of one sample
instructional module.

The goals of the Advisor Workshop were:

1. To identify the content for the instructional

materials for advisors to self-advocates.

40

2. To identify additional materials and resources.

3. TO discuss issues related to advocacy and self-

advocacy.

The Advisor Workshop was designed as an intense eight
hour work session. The session was to start at 9:00 a.m.
and continue until 5:00 p.m. with lunch provided. Telephone
calls and other external or work related business was dis-
couraged so participants could concentrate on the tasks
without interruption. Each participant was given a work-
shop packet which contained a copy Of the National Survey,
nine National Survey responses and a sample of an instruc-
tional module. (Appendix C ).

Part I (a.m. session) of the Advisor Workshop was
designed to identify content for the instructional materials
and discuss issues related to advocacy and self-advocacy.
The Advisor WOrkshop began with a reading and discussion Of
the Position Paper. Next, the participants were instructed
to read the returned National Surveys. The product for the
morning sessions was to be a list of major topics around
which instructional materials would be developed.

Part II (p.m. session) included reviewing existing
materials and making recommendations for additional mater-
ials, reacting to the sample Module design, discussion Of
the role of the service provider as an advisor, and train-
ing ideas and activities. The product for the afternoon
session was to be a list Of training activities congruent

with the content with consideration given to the discussions.

41

A trained anthropologist who was also an advisor for
self-advocates functioned as a participant Observer during
the Advisor Workshop. Her responsibilities as a partici-
pant Observer were to record Observations about the discus-
sions as a perception check with the workshop director, as
well as assist in determining the consistency between the
intents Of the workshop and occurrences.

Process notes were kept by the Advisor Workshop
director. These notes were intended to be an additional
data source and to be used when conducting perception checks
with the participant Observer.

As indicated, suggestions and recommendations for
the major topics were established in cooperation with the
Advisor WOrkshop participants, utilizing the National
Survey responses. The respective viewpoints from these
two information sources were compiled and compared for
consistency. A list was established that contained major
headings with content items under each. Themes were
determined by synthesizing the categories, headings and
items from the list established at the Advisor WOrkshOp
and the third list from the National Survey.

The suggestions from the National Survey and Advisor
Workshop were organized within themes according to:
knowledge, cognitive information obtainable through read-
ings, lecture and discussion, skills, abilities that a

person can demonstrate (such as facilitating a group in

42

making decisions), attitudes and beliefs (those dispositions
that may limit or Open one to the ideas Of self-advocacy)

(Figure 2).

 

Philosophy and Orientation to Self-Advocacy
Role of Self-Advocacy Group Advisor
Working With Self-Advocates
Facilitating A Self-Advocacy Group
Human Rights and Responsibilities

Starting and Maintaining Self-Advocacy Groups

 

FIGURE 2. CONTENT THEMES

Instructional Format

A module is an instructional unit organized around a
central theme. A module should include: goal statements
for intended learning; a rationale stating the purpose for
the module; objectives to be accomplished by the learner;
and activities designed to facilitate learning.

The module format was selected because Of its potential
for individualization. Service provider positions include
aides, counselors, instructors, rehabilitation workers,
casemanagers and residential workers. In some agencies,
staff development and in-service training may take the form
Of individualized study while in others it may be in the

form Of in-service workshops.

43

Six themes and related goals were identified reflecting
the literature, the views Of the National Survey respondents
and the Advisor Workshop participants. These themes and
goals formed the basis for the modules. A rationale for
each module was develOped. The rationale provides the
learner with a statement Of why they are learning what they
are asked to learn. Specific Objectives were identified
for each module. The Objectives focus attention on what
is to be learned. Activities for each module were also
developed. These activities were designed to reduce the
abstract nature Of the content.

Each module included procedures for gathering data
from each trainee. These trainee measures focus on identi-
fied knowledge, skills and attitudes Of the trainee rela-
tive to the content Of the instructional package. Profi-
ciency and attitude measures were used to reflect changes
Observed in the trainees (Cronbach, 1973). The trainee
measures were:

a. Pre-test/Post-test

b. Assessment Sheets

c. Impact Questionnaires

d. Skill Development Sheets

e. Follow-up Interviews

In addition, each module incorporated a feedback 100p
for product revision. These process measures were concerned

with events taking place in the presentation session

(Cronbach, 1973). The module evaluation measures included:

44

a. Participant Observer Notes

b. Module Evaluation Forms

c. Presentation Session Notes

d. Attendance Records

e. Anecdotal Notes

The modules provided structure for six two hour training
sessions. The content of each module was limited to allow
for a brief lecture and considerable discussion and inter-
action. The interaction provided opportunities to gain
additional perspectives and increase the likelihood that
trainees would become supportive of each other in their

attempts to use newly acquired knowledge and skills.

Product Implementation

The purpose of the Product Implementation task was
to field-test the package of six modules (Appendix D ).
This task involved two sub-tasks: selection Of trainees.

and schedule Of training sessions.

Selection Of Trainees

The idea of self-advocacy within a comprehensive
service agency had been promoted for one year prior to
Product Implementation. Discussions about self-advocacy
with staff and administrators from three components Of the
agency (Life Consultation, Residential and Training and

Habilitation) had been conducted. A summary report Of the

45

Second Annual Michigan People First Conference was presented
to the administrative staff Of the agency. A fifteen minute
video-tape on People First was presented at a Training and
Habilitation staff in-service. Staff reactions to the idea
Of self-advocacy ranged from disinterest and skepticism to
support and curiosity.

Clients from a work activity program and a living
center in the Lansing, Michigan area, participated with
their advisors in planning to participate in the Third
Annual Michigan People First Conference. These advisors
and other service providers from the living center shared
a belief in self-advocacy and participatory democracy.

Service providers from a comprehensive community
agency for the mentally retarded and a non-profit residen-
tial program were sought tO participate in the advisor
training. It was felt that administrators would experience
a conflict of interest if trained to be advisors. In addi-
tion, it was believed that they could function better to
promote self-advocacy within the agency at all levels.
Announcements were made at administrative and staff meetings
about the training and the training schedule. A site
interest survey (Appendix E:) was sent to each administrator
and supervisor. Supervisors were called and reminded
about the training.

The trainees were to volunteer to participate in the

training. NO attempt was made to randomly select training

46

participants. The training was made available to all
service providers in the two agencies.

The site interest survey generated one response from
Life Consultation indicating three case managers wanted
to attend the training. The other contacts were by tele-
phone or personal request.

Fifteen service providers from two agencies started
the training sequence. One person was employed the week
training began and was assigned by her supervisor to attend.
The other trainees chose to participate.

The trainees had at least one representative from
each major service provision job classifications. There
were seven professional staff, seven para-professional
staff and one administrative staff person. Casemanagers,
mental retardation therapists and a physical therapist were
considered professional staff. Training and habilitation
instructors, resident managers, resident counselors and
resident aides were on a para-professional level.

Eleven Of the trainees were from Programs for the
Mentally Retarded (PMR) with four from Moore Living Center.
Programs for the Mentally Retarded (PMR) has three compo-
nents: Life Consultation, Training and Habilitation and
Residential. Life Consultation provides case management
services. Training and Habilitation provides day programs
for persons past the age Of twenty-five. Residential

‘Services involve the living alternatives Offered by PMR.

47

Moore Living Center is a residential program with case
managers, counselors and aides (Table 1)-
Ten women and one man attended from PMR. Moore

Living Center had three women and one man.

TABLE 1. SELECTION OF TRAINEES

 

Programs for the Mentally Retarded
Life Consultation
Case Manager 3
Training and Habilitation
Mental Retardation Therapist

Training and Habilitation Instructor
Physical Therapist

(dram

Residential

Administrative Assistant
Resident Manager
Residential Aide

wrael

Moore Living Center

Case Manager
Resident Counselor
Resident Aide

'hawra

TOTAL 15

 

Twelve Of the fifteen trainees completed the training.
A case manager withdrew due to illness. The administrative
assistant indicated that she was over extended and withdrew.
The resident manager withdrew. All Of the people from

‘Moore Living Center completed the training.

48

Schedule of Training Sessions

 

The decisions when and how long each training session
would last was based in part upon an understanding of the
job requirements each agency placed upon it's service
providers. Staff who work in day programs were needed at
their sites each day until at least 3:00 p.m. They usually
work until 5:00 p.m. Tradition in one agency had in-service
sessions from 3:00 p.m. to 5:00 p.m. Consideration was
given to weekend or all day sessions but this was ruled
out because time was needed for the trainees to read,
Observe and complete the various on site consumer involvement
activities. Besides completing assigned tasks, trainees
would need time to assimilate what they were learning.

The trainees were perceived as active rather than passive
learners and were expected to spend time and energy applying
the knowledge and skills gained while performing their
regular job functions.

Staff from residential programs were considered to
have more time flexibility than those in day programs.

The decision was made to accomodate day program personnel,
recognizing time constraints and staffing needs of the
sponsoring agency. Travel time between sites was considered
resulting in the decision to offer the training sessions
from 3:30 p.m. to 5:30 p.m. on wednesdays for six consecu-
tive weeks. Approximately 20 hours Of service provider

time, including 12 hours Of classroom time, six hours to

49

complete activities, one hour for consultations and one
hour for a follow-up interview, was required.

It was anticipated that absences would occur. Therefore,
each training session was tape-recorded and individual make-
up sessions were scheduled as necessary. During make-up
sessions, themes, goals, rationale and Objectives were
reviewed prior to listening to the tape. Additional direc-
tions given to the trainee included:

1. "The taped-session will be played so you will

be able to listen to the discussion."

2. "If at any time you want to comment or discuss
any of the points or issues raised, I will stop
the tape."

3. "The tape recording is a catalyst for thought
and discussion."

4. ”Listening to the tape will assist you to

understand the direction the group is going."
Following the make-up session, the Impact Questionnaire,
Module Evaluation and following week Assessment Sheets

were filled out by the trainee.
Product Evaluation

The purpose of the Product Evaluation task was to
review the results Of the field-test data. This task
involved four sub-tasks: determine evaluation plan,

develop instrumentation, data collection and data review.

50

Evaluation Plan

 

The task Product Evaluation involved field-testing the
module package. The field-test is a form Of evaluation
used to determine the need for revisions (Cronbach, 1973).
Revisions should focus on improving the relevance and
design Of instructional materials (Meyer, Frank and Rodee,
1970).

"Formative Evaluation is process Of systematically

trying out instructional materials with learners

in order to gather information and data which will

be used to revise materials. The implication Of

the term 'formative' is that the evaluation process

occurs while the materials are still being developed."

(Dick, 1977, p.311).

Scriven (1973) suggests that any curriculum builder is
involved in formative evaluation. Formative evaluation
relates to the stage of development of curricular material
(Stake, 1967). The module package was in a formative
stage Of development, requiring the testing and revision
Of the materials.

Stakes (1967) model (Figure ), was useful in
developing an evaluation plan. Stakes (1967) data matrix
provides a structure to illustrate the inter-relationship
of data sources used in descriptive evaluation. The
matrix identifies three bodies Of information: Antecedents,
Transactions and Outcomes. Antecedents are those conditions

which exist prior to training. Transactions are those en-

counters of trainee with facilitator, trainees with each

51

other, author with reader, etc. Transactions comprise
the process of education and are dynamic. Outcomes and
Antecedents are static. Outcomes are the result of an
educational experience. The impact Of instruction could
be measured on facilitators, administrators and others.
Within the descriptive matrix, Stake (1967) includes
intents and Observations. Intents are defined as all
intended learning outcomes, and are synonymous with goals
and Objectives. Observations include those tools and

methods used by evaluators to gather information and data.

 

INTENTS OBSERVATIONS

 

ANTECEDENTS

 

TRANSACTIONS

 

OUTCOMES

 

 

 

 

FIGURE 3. STAKE'S MODEL FOR DESCRIPTIVE EVALUATION

Stake's model guided the development Of the evaluation
plan for the present project (Figure 4). Using Stake's (1967)
data matrix, the Module package represented the intended ante-
cedent. Process review focused on individual modules
determining congruence between the intended transactions
and the Observed transactions. The Observed antecedents

were reviews in relation to the transactions and outcomes.

52

INTENTS

OBSERVATIONS

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

ANTECEDENTS
Instructional Module Package Assessment Sheets
Materials Module Content
Pre-test
Trainee
Assessment
PROCESS REVIEW
Congruence
TRANSACTIONS
Presentation Activities Module
Session Listed in Evaluation Sheet
Interaction Each Module Participant
Observer
Anecdotal Record
Tape Recordings
OUTCOME REVIEW
Congruence
OUTCOMES
Trainee Gains Module Goals/ Impact
Objectives Questionnaires
Skill Development
Checklists
Post-test
Follow-up
Interview
FIGURE 4. DESCRIPTIVE DATA SOURCES

OUTCOME REVIEW

Contingencies

53

Outcome review was incorporated to determine the congruence
between intended outcomes and Observed outcomes, and
Observed antecedents were reviewed in relation to the
Observed outcomes (Stake, 1967). Stake (1973) cautions
against attempting to determine causality due to the
difficulty in measuring casual relationships. Figure 4

is an application Of Stakes Model (1967) for descriptive
evaluations with the relationship between data sources

and review procedures.

Data Collection Instruments

The instruments used to gather data were designed and
developed for the purposes of this project. The instru-
ments were designed to either gather data relevant to
specific modules or relevant to the module sequence.

Evaluation Of the individual modules was sought to
determine the impact each module had on the trainee and
to provide data for revisions Of the module. Instruments
were developed for assessment, module impact, skill
acquisition and module evaluation by each trainee. An
Observational methodology was designed to determine the
congruence between module intents and occurrences.
(Figure 5 ).l

Modules II through Module VI included Assessment
Sheets (Appendix D ). These assessments were intended to

identify what the trainee knew about the content to be

Antecedents

Transactions

Outcomes

54

 

 

Intents Observations
Assessment Sheets

Module Participant Observer

Activities Module Evaluation

Sheets
Anecdotal Records
Tape Recordings

 

 

 

Impact Questionnaires
Skill Development
Checklists

 

FIGURE 5. PROCESS REVIEW OF MODULE EVALUATION INSTRUMENTS
AS APPLIED TO STAKES DATA MATRIX

 

55

covered in each module. Assessment Sheets provided data
for the Observed antecedents.

Modules I, IV, V and VI had Impact Questionnaires
(Appendix D). These questionnaires were intended to
determine the trainees comprehension Of the content
presented. In addition, an attempt was made to determine
how the content affected the trainee's relevant attitude
and beliefs. This was a measure of Observed outcomes for

each module.
Skill Development Checklists (Appendix I» were used

in Modules II and III instead of Impact Questionnaires.
These modules focused on the acquisition of advisor skills.
This was an outcome measure.

Module Evaluation Sheets (Appendix D) were intended
to provide feedback concerning the trainee's perception
Of the session and module. Data were gathered about
trainee satisfaction including recommendations for product
revision. This was a measure Of module transactions.

A procedure was developed to monitor the congruence
between module intents and occurrences. This procedure
involved the use of a trained Anthropologist as a
participant Observer in each session. Her role was to
record the content of interactions during the presentation
sessions. This record provided data about information
presented, values expressed by the trainer and trainees,
along with information about attitudes and feelings of
trainees. Feedback was also given about the presentation

transactions.

56

Anecdotal records were kept by the trainer. These
records were used to note perceptions about the use of
the materials, interactions of the group and critical
incidents.

Data were sought to determine the overall impact
the module package had upon the trainees. The instruments
used to gather these data included a pre-test/post-test

and a follow-up interview. (Figure 6).

 

 

Intents Observations
Antecedents Pre-test
Outcomes Module Post-test
Goals Follow-up

Interview

 

 

 

 

FIGURE 6. OUTCOME REVIEW OF MODULE PACKAGE INSTRUMENTS AS
APPLIED T0 DATA MATRIX.

A test (Appendix F) was developed to assess each
trainee's knowledge upon entering the training sequence
and to review possible change after training. The dimen-
sions Of the test included: 1) normalization, 2) advocacy

and self-advocacy, 3) mental retardation, 4) decision making

57

and problem solving, 5) group dynamics, 6) assertiveness,
and 7) legal issues. Pre-test data were used to determine
each trainee's current knowledge on the measured dimensions.
It also served as an advanced organizer for the training.
Following the six weeks of training, the test was re-
administered as a post-test.

A structured Follow-up Interview (Appendix G) was
planned to determine each trainee's perceptions about the
impact Of the training. The intent was to determine to
what extent each trainee had been influenced by the train-
ing and to get additional feedback abou the design, format

and presentation of the instructional materials.

Data Collection

 

Module Evaluation Data Collection

Assessment Sheets were administered at the end of each
session for the next module session. For example: The
assessment for Module II was given at the end Of session I.
One week lapsed between sessions, giving the trainer an
Opportunity to refine the planned presentation in relation
to trainee assessments. This information had the potential
effect Of altering the intended activities for the next
presentation session and was useful in making product and

process adjustments.

58

The Impact Questionnaire and Module Evaluation Sheets
were also administered at the end Of each presentation
session and had the same potential effect as the Assess-
ment Sheets.

Skill Development Checklists were administered during
activities as part to the learning experience.

The participant Observer and trainer met immediately
after each session and reviewed the field notes. These
review sessions were intended to last one hour each. In
addition, the Anecdotal records kept by the trainer were

reviewed with the participant Observer.

Module Package Data Collection

The pre-test was administered during the first forty
minutes Of the first training session.

The post-test was administered one week after the
completion of the training sequence. Appointments were
made with each trainee for the forty minute re-test period.
A brief disOUssion followed each post-test to plan and
schedule the Follow-up Interview.

The Follow-up Interview was conducted and tape
recorded one month to six weeks after the training was
completed. The intent was to allow time for each trainee
to assimilate and integrate the content and training ex-
perience as well as to observe and reflect to what extent

the training impacted their work.

59

Review Of Data

 

The review of data included both process and outcome
reviews. The process review utilized data sources to make
adjustments during the field-test period and to determine
the congruence between the intended activities and observed
activities (Figure 5). The outcome review was conducted
to determine the contingencies among the antecedent Ob-
servations, transaction observations and outcome Observa-
tions, and to determine the congruence between the module
package intended outcomes and actual outcomes (Figure 6).

The process review incorporated feedback received
during the presentation sessions. Data from the Assessment
Sheets and Impact Questionnaires were reviewed on an item-
by-item basis. Items were grouped according to the theme
of the comment. NO attempt was made to aggregate comments
on these items. Data were reported in a descriptive
manner.

Presentation sessions provided data about the occurrence
of activities which were compared to module intents to
determine congruence between module intents and occurrences.
Data from the participant Observer, anecdotal notes and
session tape recordings were reviewed to determine if the
intended activities occurred.

Themes of discussion were noted through the combined
use of data sources. Concepts intended to be discussed to
the extent planned were considered intended occurrences.
Deviations from the intended occurrences were reported as

unintended occurrences.

60

Module Satisfaction was determined through use of
Module Evaluation Sheets. Some items required use of
ratings. These items were weighted from five to one, with
five as the most positive element on the scale and one as
the most negative response. A mean score was determined
for each item. Items requiring comments and short responses
were reported in a descriptive manner.

Determination Of the contingencies among antecedents,
transactions and outcome Observations was approached with
an understanding that causality may exist, but the tools
used in this project were not intended to measure these
relationships.

The pre-test/post-test required short written responses
for each question. Subjective judgments about the accuracy
of each trainee's responses were made by the trainer, with
no attempt to determine rater reliability.

The Follow-up Interview of each trainee was tape
recorded. Trainee comments were noted, categorized and
reviewed for common elements/themes. The comments were
reported in a descriptive manner. In addition, interview
data were reviewed in an attempt to determine relationships

to the module package.

CHAPTER THREE

RESULTS

This chapter is divided into two sections. The
process review data section reports the results of data
gathered during the presentation Of individual modules.
The outcome review data section reports the results Of

data on the module package.

Process Review Data

The process review focused on individual modules with
the determination of congruence between the intended
transactions and the Observed transactions. The Observed
antecedents were reviewed in relation to the transactions

and outcomes for each Module.

Module I Occurrences - Session I

Thirteen service providers said they were committed
to participating in the advisor training. One week prior
to the beginning of the training, six of the prospective

trainees informed the researcher that they would be unable

61

62

to start on the intended day. Since these six people were
unable to attend the first presentation session, a make-up
session was scheduled for the following Monday.

The seven trainees who attended the first presentation
session were identified as Group I. Two additional people
made arrangements and joined the other six in attending the
second presentation of Module I. These eight trainees were
identified as Group II.

The pre-test was administered at the beginning Of the
Module I presentation session I. The module package was
distributed and explained. An overview Of the training
occurred with an explanation Of the modules and project.
The reading Of the People First Article did not occur.

The participant Observer noted varied levels of
intensity and involvement during the administration Of the
pre-test. She reported that some trainees needed support
due to their lack of familiarity with terms and concepts
used in the pre-test. Another Observation was that Group I
was aware of the trainer's disappointment Of not enough
trainees participating in the session. She felt this was
an Obstacle to the flow Of events and the initial presenta-
tion Of material.

The activity card exercise was conducted. A number
of trainees expressed discomfort with pinning on the card.

The feedback was used to modify the exercise for Group II.

 

 

63

The identifying issues Of self-advocates exercise
resulted in sharing Of many personal experiences. The
recording of examples did not occur due to time limitations
and trainees involvement in sharing their experiences.

This activity was allowed to continue for ten extra minutes.

Group I discussion focused primarily on advocacy and
self-advocacy. One trainee had her own view of self-
advocacy.

The discussion Of self—determination did not occur,
but was briefly mentioned. This was due to time constraints.

The Impact Questionnaires, Module Evaluation Sheets
and Assessment Sheets were administered. Sixty-five
minutes Of the first session were spent in the administration
Of the test instruments.

Reading assignments for the following week were

distributed.

Module I Congruence of Presentation Intents and Occurrences
- Session I

 

There was a discrepancy between the intended starting
date and the actual presentation Of Module I. Fifty-three
percent of the trainees did not attend the first presentation
session. The presentation session for Module I was repeated.

The trainer' 3 disappointment about the attendance at the
first presentation session was noticed by trainees. He
_ did not intend to have his reactions to events affect the

flow of activities.

64

The reading Of the People First Article was not read
after the pre-test as intended.

Embarrassment was experienced by some trainees to the
name card exercise. This was an unintentional occurrence.

The identifying issues Of self-advocates exercise had
the intended results, interaction and sharing Of experi-
ences. A written record Of examples did not occur.

Group I discussion focused primarily on advocacy and
self-advocacy. The self-determination discussion did not
occur as intended.

The administration Of data sources occurred after

5:30 p.m.

Module I Impactguestionnaire - Session I

Item 1: Differentiate between advocacy and self-
advocacy.
All responses were brief definitions of
advocacy and self-advocacy.

Item 2: Briefly explain self-determination.
One person wrote about motivation to act
on wants and needs. Three commented on
the ability to make decisions for self.
Three others thought it was a right to
determine one's own fate.

Item 3: What was your reaction to the People First
Article?
All responded that they did not read the

article.

65

Item 4: What do you feel about a national self-

advocacy movement?

Three people responded to the organizational
power Of a social movement. Two commented
about the potential impact of the movement.
One person thought the question was too

broad. One person did not respond.

Module I Evaluation Sheet — Session I

Mean scores were reported for Items 1, 2 and 3.

(Table

-TABLE

2).

MODULE I EVALUATION SHEET-SESSION I-WITH RESULTS.

 

Item 1:

Item 2:

Item 3:

The presentation of the material was:

 

exciting interesting O.K. dull boring
/ 1.. / 1 /
5 4 3 2 1

Mean Score - 3.8

The discussion on self-determination was:

 

very not a waste
useful useful O.K. useful Of time
/ / */ / /
5 4 3 2 1

Mean Score - 3.2

The activities were:

 

rewarding interesting O.K. dull boring
/ / x / / /
5 4 3 2 1

Mean Score - 3.7

 

66

Item 4: What did you find most useful during this
session?
Three trainees found the group interaction
most useful, with two others who commented
on the discussion Of values.

Item 5: What did you find least useful?
Two trainees found the name tag exercise
least useful, with another reacting to the
immediate evaluation. Four trainees com-
mented that the pre-test was least useful.

Item 6: What would you leave the same?
Three trainees liked the group interaction
and sharing of ideas. One person commented
on the name card exercise.

Item 7: What would you change in this module?
Three trainees commented on the lack Of time.
One person wanted the content delivered faster.
Another wanted to eliminate the evaluation.
A sixth person would have liked to see more
people attend. The seventh comment was a

request to change the name card exercise.

Module I Occurrences - Session II

 

The second presentation of Module I occurred with
Group II. Group II attended on Monday at the same time as

originally scheduled.

67

The pre-test was administered in the same manner as
with Group I. An orientation to the training and project
was also given.

The activity card exercise was modified to reduce
embarrassment. People were instructed to fill out the card
as outlined then form triads and discuss what they were
comfortable sharing. This allowed for more personal
sharing without the difficulty associated with milling.

Four of the trainees were aware of a conflict of one
of the trainees. This may have had impact on the group.

The identifying issues of self-advocates exercise
had similar results as with Group I.

The discussion on advocacy and self-advocacy
demonstrated a lack of clarity about advocacy roles.
Consequently, self-advocacy was expressed as a vague concept.

The discussion on self-determination occurred. This
was a difference between the content of the two Module I
presentation sessions.

The session went fifteen minutes past the intended
ending time.

The Impact Questionnaires, Module Evaluations and
Assessment Sheets were administered. Again, sixty-five
minutes were spent on the administration of the testing
instruments.

The reading assignments were distributed as trainees

were leaving.

68

Module I Congruence of Presentation Session Intents and
Occurrences - Session II

 

Group II activity card exercise was modified and
occurred as intended. The identifying issues of self-
advocates exercise had similar results as Group I.

The discussion on advocacy and self-advocacy provided
assessment information to the trainer. This was an intended
result of using the discussion format.

The discussion on self-determination occurred but
not to the extent sought. This was another difference be-
tween the presentation of the two Module I sessions.

It was not intended that the session went fifteen
minutes overtime.

The data sources were administered as intended.

Module I Impactguestionnaire - Session II

Item 1: Differentiate between advocacy and self-
advocacy.
All responses were brief definitions of
advocacy and self-advocacy.

Item 2: Briefly explain self—determination.
Two respondents stated that self-determination
was the basis for self-advocacy. Three com-
mented on the motivation to control one's
own life. Two discussed making choices and
decisions for self. One wrote "filling your

own needs."

 

 

69

Item 3: What was your reaction the People First
Article?
All respondents made positive comments about
the article. Seven wrote about the potential
effects of self-advocacy. One commented on
the historical perspective it offered her.
Item 4: What do you feel about a national self-
advocacy movement?
Five commented on the need for the movement.
One person wanted to know more. Two responses

focused on the organizational effort required.

Module I Evaluation Sheet - Session II
Mean scores were reported for Items 1, 2 and 3.

(Table 3).

70

 

 

 

TABLE 3. MODULE I EVALUATION SHEET-SESSION II -WITH
RESULTS.
Item 1: The presentation of the material was:
exciting interesting O.K. dull boring
/ / 4 / /
5 4 3 2 1
Mean Score - 3.0
Item 2: The discussion on self-determination was:
very not a waste
useful interesting O.K. useful of time
/ x / / / /
5 4 3 2 1
Mean Score - 4.3
Item 3: The activities were:

 

rewarding interesting O.K. dull unfulfilling
/ % / / / /
5 4 3 2 1

Mean Score - 4.4

 

Item 4: What did you find most useful during this

session?

Five trainees found the discussion on self-
determination most useful with two responses
for the common concern for self-advocacy.
One person liked the emphasis on group

process.

Item 5:

Item 6:

Item 7:

71

What did you find least useful?

Three trainees found the pre-test least

useful. Another person commented on the
short time for discussion.

What would you leave the same?

One person said everything. Two others

said the discussion. Another found the

session very interest arousing. The fifth

person enjoyed meeting others.

What would you change in this module?
One person recommended an overview of the
module package, with another requesting

more time.

Module II Assessment

Item 1:

Give an example of how you respected a
mentally retarded person's dignity of risk.
Two trainees gave examples that demonstrated
the giving of support and respect for persons
who sought new experiences. Four gave
examples where failure for the mentally
retarded person was anticipated. One trainee
disagreed with the mentally retarded persons
discussion but respected their choice. Five

did not know of the concept.

72

Item 2: Why do you want to be an advisor to a
self-advocacy group?

Seven disclosed their desire to better the
lives of the disabled. Two saw the training
as an opportunity for self-improvement.
Three did not respond.

Item 3: What is a strength that you have that will
assist you in facilitating a self-advocacy
group?

Four trainees believed they had good listen-
ing and communication skills. Three believed
they could facilitate decision making. Two
commented on their leadership. One had a
strong desire to be an advisor. Another
wanted to see people happier.

Item 4: Do you feel competent to facilitate a self-
advocacy group?

Three responded yes, with two needing help

and seven said no.

Module II Occurrences

Refreshments were provided at the beginning of the
presentation session. This occurred in all subsequent
sessions. The intent was to provide trainees an opportunity
to relax and interact informally.

Individuals from both groups were introduced to each

other.

73

The discussion on the principles of self-advocacy was
conducted in conjunction with the content of the reading
materials. A lecture on the functions of the advisor
followed. Definitions and examples of service providers
as advisors were provided. The next topic was the role of
the service provider as a change agent within an agency.
Advisor skills were elaborated. The advisor skill assess-
ment checklist was explained.

The self-advocacy group role play was conducted.

Some trainees appeared to have difficulty participating

in the role play activity. The participant observer noted
that the advisor skill assessment checklist was threatening.
Trainees did not want to evaluate each other. The activity
needed more time as not everyone participated in each role.
Processing of the role play provided an opportunity for
trainees to share their experiences. The reactions of
trainees to the role play activity was noted in the discussion
with the participant observer.

One trainee held herself outside of the group. She
repeatedly moved away from others and tended to sit behind
others. She later withdrew from the training. Another
shared conflicts and dilemmas she encountered in her work.
A casemanager had deep insight about a clients perspective.

A trainee expressed ambivalence in her role as advisor.

74

The participant observer noted in the review session
the trainer's moderate position in bringing change into
the system. A discussion followed about change strategies
with a clarification of ideological positions.

It was noted that the advisor skill assessment
checklist was incomplete. Directions were not clear and
there was no place to put answers.

Module Evaluation Sheets and Assessment Sheets were

administered. Readings were distributed.

Module II Congruences of Presentation Session Intents and
Occurrences.

 

Module II refreshments were an added discrepancy from
the original intents. This was generally well received
except for those who were concerned about their weight.

Introductions between the two groups were not part of
the intended presentation of Module-II as outlined in the
module package. This was an intended activity based upon
the turn of events.

The discussion topics occurred as intended. One trainee
observed that the content was similar to the concepts in-
corporated in community organization. She provided numerous
resources to the trainer. This was an unanticipated oc-
currence that assisted in adding depth to the content.

The self-advocacy group role play occurred. Problems

were noted with the advisor skill checklist. Everyone did

75

not participate in each of the roles as intended. The
activity required more time to enable each person to
participate in each role.

One trainee did not attend and withdrew from the
training.

The data sources were administered as intended.

The clarification of ideology between the participant
observer and the trainer was a welcomed unanticipated

occurrence .

Module II Skill Development Checklist

 

Fourteen trainees attended the Module II presentation
session. The Self Advocacy Group Role Play activity had
three groups,with five trainees in two and four trainees
in the other group. Each group had at least one role play
situation. One group completed two role plays. Six trainees
participated as advisors, representing forty-three percent
of trainees. Sixteen Advisor Skill Assessment Checklists
were returned.

A face value review of the checklist revealed
discrepancies between respondents when observing the same
trainee behavior. In response to a question, one person
said yes, one said no, another said some and two did not
respond. Explicit directions and an explanation of terms
used were not provided. Consequently further review of

results of this instrument were considered fruitless.

76

Module II Evaluation Sheets

 

Mean Scores were reported for Items 1, 2 and 3.

(Table 4).

TABLE 4.. MODULE II EVALUATION SHEET - WITH RESULTS

 

Item 1:

Item 2:

Item 3:

The presentation of the material was:

 

 

excellent O.K. very poor
/ 4 j / /
/ x/ J / /
clear confusing
5 4 3 2 1

Mean Score - 4.0
4.3

The discussion on the Principles of Self-Advocacy
was:

 

excellent good O.K. poor very poor
/ x/ / / /
5 4 3 2 1

Mean Score - 4.2

The role play activity was:

 

helpful good harmful
/ g / a / / /
5 4 3 2 1

Mean Score - 4.3

 

Item 4: What did you find most useful about this

session?
Five trainees found the lecture most useful.

Two people found the discussion most useful.

 

Item 5:

Item 6:

77

Four others enjoyed the role play exercise.
One person enjoyed the entire session.

What did you find least useful?

Four trainees noted a lack of time to follow
through with group process. One person did
not like the role play exercise. One person
was disappointed that everyone did not
participate as an advisor in the activity.
One person reacted to another trainee's
comments. A trainee suggested that the other
trainees could be utilized more as teachers.
What suggestions or recommendations do you
have?

Seven wanted more time and directions for

the role play exercise. One person wanted
more group discussion. Another suggested the
group lead itself. A trainee thought there
was too much content for the session. Another
said the material was presented too fast and

wanted the meeting to end on time.

Module III Assessment Sheet

Item 1:

List three commonly held myths about the
developmentally disabled and mentally
retarded.

Seven trainees responded to the theme of the

retarded as a diseased organism. Ten

Item 2:

Item 3:

Item 4:

78

responded to the eternal child theme. Four
responded to the theme of a menace to society.
Four others responded to the theme of the sub-
human organism. Six used variations of the
theme as an object of dread.

Write an example from your own experience
where a disabled person has expressed their
need to be a self-advocate.

Nine trainees responded with clear examples.
One gave an opinion and not an example. One
person did not respond to the question.
Describe how you are perceived by the people
you are seeking to advise.

Six thought they were perceived as authority
figures. Two saw themselves as advocates.
Two felt as friends. There was one helper,
a social worker, a staff person, an expert
and two did not respond.

Have you started working with people as an
advisor?

Yes 7 No 3 Don't Know 1 '
If yes, do you feel more confident as a
result of what you have learned in this
training? Please explain.

Three were clearer about principles and

limits of advisor role. Three felt more

79

sensitive and empathic. One person broadened
their view of people.

If no, do you feel more confident to start as
a result of this training? Please explain.
One person felt more confident but wanted to
learn more. The other two only felt slightly

more confident.

Module III Occurrences

Twenty minutes was spent on discussions of assignments.
Some trainees expressed difficulty in completing assignments.
They did not expect to do homework and wanted work time to
complete training tasks, including readings. One trainee
resented the course structure of the training. This trainee
became defensive.

The discussion on developmental disabilities and mental
retardation was conducted. The discussion focused on the
myths and stereotypes society has placed upon the mentally
retarded. A historical perspective was offered that the
lowest bidder was given responsibility for taking care of
societies deviants. A few trainees supported this system
as being the most cost and personnel efficient. The partici-
pant observer noted that some did not question the system
because alternatives were not apparent.

The issue of consumerism was discussed. It was
pointed out that consumers often fear raising questions

about the services provided for fear of losing those limited

80

services. An example was given of a consumer who said in
effect, "If I question this service they will send me back
to the institution."

The development of a list of self-advocacy skills did
not occur. Trainees did not have a broad picture of self-
advocacy and tended to focus on behavior of individuals.
It became apparent to the trainer that generalizing be-
havior to a list of skills was beyond the scope and time
constraints of the training, and was the responsibility of
the trainer.

The self-advocacy role play exercise occurred. When
trainees role played self-advocates they were more sub-
missive. Trainees role played the advisor as a stronger,
more knowledgeable, authority person. The participant
observer raised the question: "How strong can a self-
advocate feel if they are reminded of their subservience?"
The activity was not completely processed.

Module evaluation sheets were administered. The
leadership style questionnaire was distributed with

readings. The session ended ten minutes late.

Module III Congruence of Presentation Session Intents and
Occurrences

 

Module III trainee reactions to the module assignments
was a discrepancy between module intents and occurrences.
The discussion on developmental disabilities and mental

retardation occurred. The participant observer noticed

 

81

that some of the trainees did not challenge the system
because alternatives were not apparent.

A list of self-advocacy skills was not developed.

The task of identification and categorization of behavior
into skills was beyond the scope of the presentation
session.

The role play exercise occurred. Trainees role played
the advisor as a strong, knowledgeable, authority person
and the self—advocate as submissive. This behavior was
interpreted as a maintenance of the dependency relationship
service providers may have with mentally retarded adults.

The data sources were administered. Three trainees
asked for directions to be repeated.

The session ended ten minutes late, an unintended

Occurrence .

Module III Advisor Skill Checklist

 

Ten trainees attended the Module III presentation
session. The Self-Advocacy Role Play Exercise had trainees
organize themselves into three groups of three. Each
person had the opportunity to function as the recorder
once in the exercise. Ten Advisor Skill Checklists were
returned.

A face value review of the checklist revealed that the
trainees did not have enough exposure to the checklist to

respond accurately or consistently to items. Directions

82

and explanation of terms were not adequate for the use
of this instrument. Consequently, further review of

results of this instrument would be fruitless.

Module III Evaluation Sheets

 

Mean scores were given for items 1, 2 and 3. (Table 5).

TABLE 5. MODULE III EVALUATION SHEETS - WITH RESULTS.

 

Item 1: The presentation of information was:

 

 

excellent clear O.K. vague confusing

/ / ., A / , /

5 4 A 3 2 1
Mean Score - 3.6

exciting interesting O.K. dull boring

/ / / / /

5 4 3 ‘2 1

Item 2: The practice interventions activity was:

 

rewarding interesting O.K. vague confusing
/ ,é/ / / /
5 4 3 2 1

Mean Score - 4.3

Item 3: My satisfaction with this module is:

 

great fine O.K. low poor
/ % j , J / /
5 4 3 2 1

Mean Score - 4.3

 

Item 4: What did you find most useful in this session?
Four trainees found the discussion of ideas

with development of new attitudes as most

83

important. Three trainees stated the role
play most useful. One person believed the
group process was the most useful aspect of
the session.

Item 5: What did you find least helpful?
Two commented on the discussion of assignments
as least helpful. One person did not like to
fill out the assessments. Two trainees
thought the group discussion was dominated
by a few trainees and felt they lost an
opportunity to gain more information from
the trainer. One person found the entire
session to be interesting.

Item 6: I would recommend these changes:
More time for role play and discussion in
small groups was one person's recommendation.
Another suggested more snappy and direct
facilitation. Two people commented that

they enjoyed the session.

Module IV Supervisory Attitudes: The X-Y Scale

 

Eleven trainees completed the Supervisory Attitudes,
The X-Y Scale. All eleven trainees placed themselves be-
tween thirty and forty on the Theory Y assumptions side of
the scale. This would indicate that they were more demo-
cratic leaders. The training promoted democratic leadership

styles. There may have been a training effect that could

84

have biased the trainees responses. This instrument did
not provide useful information for planning the Module IV

presentation session.

Module IV Occurrences

 

Session opened with a lecture on group development.
Questions of motivation were raised with respect to the
conflict stage of group development. The issue of moti-
vation was presented as a perceptual problem, with the
advisor as a facilitator to the self-advocacy group in
the establishment of constructive norms to resolve conflicts.

One trainee pointed out that she had been in a women's
group for seven years and the stages outlined fit her
experience.

A trainee brought up the power roles as professionals.
This power position results in promoting the deficiency
needs of consumers. From this perspective, some profes-
sionals find the promotion of interdependence between the
professional and service recipient threatening to their
professional role image.

An example was given that demonstrated empowering
self-advocacy group decision making. A group was given a
donation of $1,500.00. The decision making process was
democratic with all decisions being discussed and voted
upon. The group was secure in its norms for voting on
issues. The self-advocacy group deliberated at it's own

pace. The interaction over a period of time resulted

85

in greater cooperation and an increased confidence of
self-advocates. The wisdom of their judgement was noted.

The stages of decision making were listed along with
a brief discussion on problem solving.

The practice intervention activity occurred. Only
three trainees had an opportunity to function as the
advisor. After each role play, a discussion occurred
that focused on the previous lectures and discussion.
These feedback and discussion sessions brought out issues
that individual trainees were having with the people they
were serving.

The last ten minutes focused on four assumptions of
groups and three types of leadership style. This presenta-
tion of content was rushed.

The Impact Questionnaire, Module Evaluation Sheets
and Assessment Sheets were administered.

Three trainees did not attend. A trainee withdrew

from the training.

Module IV Congruence of Presentation Session Intents and
Occurrences.

Module IV, a lecture on group development was presented
as intended. The issue of motivation was an unintended
occurrence. This issue suggested that the concept of self-
advocacy as a felt need may not have been understood by

those trainees.

86

The elaboration on the power position of professionals
assisted the group to develop a perspective toward their
roles as advisors. This was an unanticipated occurrence.

The presentation on decision making and problem solving
occurred but was not develOped adequately. Ten minutes were
provided for the dissemination of this content.

The practice intervention activity occurred. Each
trainee was intended to function as advisor. Three trainees
participated as advisors.

Ten minutes were given for a lecturette on groups and
leadership styles. This was not enough time to develop
the content.

The data sources were administered. Three trainees
wanted to leave and asked if they could mail their question-
naires. This was agreed upon by the trainer and represents

an unintended occurrence.

Module IV Impact Questionnaire

 

Item 1: Label and briefly describe the stages of group
development.
Three trainees correctly labeled and explained
the four stages of group development that
were presented. Two trainees correctly de-
scribed the stages of group development.
‘Two correctly labeled the stages of group

development. One person wrote only three

Item 2:

Item 3:

Item 4:

87

labels. Two others did not appear to
understand the concept.

Identify the steps in the problem solving
approach.

Eight trainees had correct responses to this
item. One person did not find her reference
to the material presented in the module
readings. One person had a short criptic
response to this item.

Identify the steps in decision making.

Nine trainees had correct answers to this
question. One person had her own answer
that did not reflect the readings or the
presentation session. One person did not
answer this item.

Fill in and explain: I believe my skills as
an advisor to facilitate self-advocacy groups

have during this session.

 

Explain.

Eight felt their skills had improved. One
person was the same, and one person did not
answer the item. Seven trainees felt more
aware and conscious of the task of being

an advisor. They all felt more confident
as expressed in their remarks. One person

worked through some conflicts she was having

88

and found many positive suggestions from the
group. One person found too much philosophy

of groups and desired concrete examples.

Module IV Evaluation Sheets

 

Mean scores were presented for Items 1, 2 and 3

(Table 6) .

TABLE 6. MODULE IV EVALUATION SHEET - WITH RESULTS

 

Item 1: The presentation of information was:

 

excellent clear 7 O.K. vague confusing
/ 1x /. / /
5 i 4 3 2 1

Mean Score - 3.9

 

exciting interesting O.K. dull boring
/ 13; / j /
5 4 3 2 1

Mean Score - 3.8

Item 2: The practice interventions activity was:

 

rewarding interesting O.K. vague confusing
/_* j / / /
5 4 3 2 1

Mean Score - 4.7

Item 3: My satisfaction with this module is:

 

great fine O.K. low poor
/ g ' / / J
5 4 3 2 1

Mean Score - 4.0

 

Item 4:

Item 5:

Item 6:

89

What did you find most useful in this session?
Seven people found the role play activity
most useful. Two others like the discussion
about group dynamics.

What did you find least helpful?

There were only four responses to this item.
One person wanted more information on group
dynamics. Two felt the didactic information
was excessive. One person did not like the
role play exercise.

I would recommend these changes:

Two trainees wanted more group problem solving
and interaction with each other. One person
suggested more time for practice and discus-

sion.

. Module V Assessment

Item 1:

Due to this training my ability to work with
disabled people has increased in these areas:
Six trainees mentioned an increased sensitivity
to the needs of the disabled. Four commented
that they were encouraging self-direction and
decision making. Three said that they had
increased their empathy skills. Three had
gained in group problem solving facilitation.

Two gained a new perspective on the rights of

 

90

the disabled. Two increased their leadership
skills. Two commented that they were more
acceptant of assertive behavior by the dis-
abled and one person gained confidence.

Item 2: List five assertive beliefs you have.
Four trainees wrote five assertive beliefs.
One person wrote four assertive beliefs.
Two trainees had three assertive beliefs.
Two peOple wrote two assertive beliefs.
One person wrote five personal beliefs about
the disabled. One person commented that
she had not formulated any assertive beliefs.

Item 3: List two laws that have had an impact on
changing the rights of the developmentally
disabled.
Five trainees correctly identified two laws.
One person listed a law and the consequence
of a law. One person commented on the
effects of laws but did not mention any
laws. Two stated that they did not know

any laws. Two did not respond to the item.

Module V Occurrences

 

The first ten minutes of the session focused on the
trainer's data collection problems.
A discussion on assertiveness was started with a

trainee defining assertiveness. Trainee perceptions of

91

self-advocates being assertive was explored. This issue
was intertwined with the issue of civil rights and rights
for the disabled. It was discovered that many of the
trainees were unaware of many laws and rights of the dis-
abled. The issue of proposed federal cutbacks was dis-
cussed. Rights were perceived as moral and ethical issues.

Concern was expressed about consumer's questioning
rules. The suggestion was made to facilitate people to
negotiate for new rules. Also, that consumers become an
integral part of the rule making process. It was pointed
out that the questioning attitude was a constructive sigh
of growth and showed the consumer wanted responsibility.
The advisor could legitimize the questioning and communicate
openly to bring about change. The advisor with the system
had the function to cultivate the environment to open the
system to consumer criticism and consumer directed change.

There was some confusion on a trainees part about the
non-normalizing quality in granting rights to the disabled.
She commented that the disabled had enough rights and any
efforts to grant "additional" rights further stigmatized
them.

A strong point was made by a trainee of the negative
consequences of supporting the deficient view of mentally
retarded people as being irresponsible. The concern was

expressed that caring was equated with control.

92.

The impact Questionnaire, Module Evaluation Sheets
and Assessment Sheets were administered.

Readings for the following session were distributed.

Module V Congruence of Presentation Session Intents and
Occurrences.

 

The first ten minutes of the session focused on the
trainer's data collection problems, an unintended occurrence.

The discussion developed as intended with relevant
points. An observation was made that assessed many of the
trainees lack of awareness of laws and rights of the dis-
abled.

Though trainees did not know laws, in fact, they did
support the principle of the law. There was a deep commit-
ment ot the growth and development of the mentally retarded.
Trainee response to consumers becoming part of the decision
making process was an indication learning had occurred.

The trainee who questioned the normalizing qualities
of special rights for the disabled, appeared to the trainer
that she did not accept the rights of the disabled. The
participant observer thought the comment was more of an
attempt to understand and explore the concept of normal-
ization and human rights.

The comment on the negative effects of supporting the
deficient view of mentally retarded people was a repeated
theme through the training. The potential for human growth

and the identification of the caring relationship was

93

valuable and useful content, but was not intended to the

extent that it occurred.

The administration of data sources occurred as intended.

Module V Impact Questionnaire

 

Item 1:

Item 2:

Item 3:

Explain how human rights are associated with
responsible assertive behavior.

Three trainees commented that non-assertive
behavior impedes access to one's human right
because it entails denying one's self.
Another two discussed rights as a basis to
justify assertive behavior. Two people
commented on the necessity to understand
rights as a means to be heard. Two dif-
ferentiated between assertiveness and ag-
gression. Two comments did not link either
concept.

I am questionning and seeking to change a
non-assertive belief that I hold:

Yes 8 No 2 Does Not Apply 1

I am considering to add assertive

 

beliefs to my belief system.
Two people commented that their growth did
not equate in numbers of beliefs. 'The other

six filled in numbers but did not comment.

94

Item 4: What would you say to a client you work

with who expressed this belief to you:

"I know it's wrong to hurt people and I
don't ever want to hurt anyone."

There were two distinct approaches to this
question. Seven people responded by show-
ing concern for the person and their need
to be aware of their own wants and feelings.
The other four responses were exploratory
questions about the persons sense of hurt,
their feelings about themselves and the

need to resolve conflicts.

Module V Evaluation Sheets

 

Mean scores were reported on Items 1 and 2 (Table 7).

TABDE7K MODULE V EVALUATION SHEET - WITH RESULTS.

 

Item 1:

Item 2:

I found the content of the material:

simple easy appropriately difficult too hard
/ 4/ ghallenging 4/ /
l 3 5 3 1

Mean Score - 4.6

The discussions were:

 

exciting useful interesting dull boring
/ x/ / / /
5 4 3 2 1

Mean Score - 4.1

 

Item 3:

Item 4:

Item 5:

95

What did you find most useful in this
module?

Three trainees found the discussion on
normalization, rights and responsibilities
the most useful part of this module. One
person commented on the conflicting
philosophical systems operating in the com-
munity. Another person mentioned the
implications of law and legislative decisions
that had an impact on the consumer's rights
movements. A trainee found the readings on
assertive belief systems useful.. Another
person commented on the discovery that she
denied mentally retarded people credibility
in their assertiveness. Two commented on
the general discussion.

What did you find least useful?

One reacted negatively to the P.L. 94-142
and Section 504 article.

What changes would you recommend?

One person suggested the inclusion of
Chapter Seven of Michigan's Mental Health
Code, instead of the P.L. 94-142 and Section
504 article. One person would not change

anything in the module.

96

Module VI Assessment

 

Item 1:

Item 2:

Describe your feelings about starting a
self-advocacy group.

Three trainees were excited and interested
in working with self-advocacy groups. Four
commented that they supported the concept

of self-advocacy but did not feel they had
the time to get deeply involved with a self-
advocacy group. Two were excited by the
concept but had a fear of failure. One
person was planning leaving his job and
would not be available to continue a group.
Discuss ways to implement a self-advocacy
group.

Two trainees did not respond to the question.
The other eight made suggestions that started
with an assessment of the need for a self-
advocacy group. Three suggested to wait for
an event to happen and start discussions at
that time. Three suggested that they would
promote the idea and develOp interest in

the group concept. They all saw the advisor
as the critical person in the formation of

a self-advocacy group.

 

97

Module VI Occurrences

 

Ways to change the job situation was the opening
discussion. Three trainees presented problems of becoming
advisors. One was negative in all her responses during
the session.

A trainee suggested the need for administration and
residential change to promote self-advocacy.

A trainee discussed the possibility of promoting
self-advocacy on an individual level. Another suggested
the effective use of incident reports and recipient rights
complaints.

The trainer gave an example of self-advocates at a
work activity center who formed a rights committee to
question the procedures used to remove an aggressive client
to the quiet room. This committee had meetings and con-
fronted the staff and supervisor about the policy and
procedures. They requested and held meetings with the
rights advisor. The person who was being given this special
treatment was included by the committee in meetings. This
example demonstrated the legitimacy of the complaint and
an effective use of the recipient rights advisor.

An example was given by a trainee that staff were
being required to develop program plans for themselves as
a means to sensitize them to the experience of consumers.

He reported that the staff felt threatened by the experience.

98

Another example from Moore Living Center focused on
some staff attempting to remove a hierarchical organizational
structure thus equalizing the roles of staff and creating
an atmosphere of equality as a cooperative organization.

An election process was explained that could be used
at work activity centers. Another model was discussed for
residential programs.

A suggestion was made to continue to meet as an
advisor support group. The trainees voted to continue to
meet on a monthly basis. The trainer was to gain adminis-
trative approval and time for the continued meetings.

The Impact Questionnaires and Module Evaluations

were administered.

Module VI Congruence of Presentation Session Intents and
Occurrences.

The discussion on ways to alter work situations for
advisors reflected an ambivalence about change and trainees'
capacity to effect change.

Some trainees gave examples that indicated they
understood the principles of the training.

A trainee proposed to continue meeting on a monthly
basis. All of the trainees agreed to the proposal. Some
may have voted to go along with the group. Of the fourteen
people (trainer included) who attended the sixth presenta-
tion session, ten have continued to meet on a monthly basis.
~The inclusion of an advisor support group was an unintended

occurrence .

99

The administration of the data sources were completed

as intended.

Module VI Impact Questionnaire

Item 1:

Item 2:

 

 

 

 

Outline a plan to start a self-advocacy
group.

Nine respondents had at least four steps in
their plans. The key points covered were:
to discuss ideas with people interested in
organizing a group, assess needs and problems
of potential group members, identify natural
leaders, assist in the organization of an
initial meeting, assist in the formation

of a group, involve others in the community
who have been involved in self-advocacy
groups.

List resources that you and self-advocates
have available.

Some of the comments included other staff,
Protection and Advocacy office, Recipient
Rights Advisors, Greater Lansing Association
for Retarded Citizens, Association for
Retarded Citizens, parents, People First,

other self-advocacy groups.

Item 3:

Item 4:

100

What will you look for when assessing the
needs of self-advocates?

Seven responded to the expressed needs of

the person. Three were sought to assess

the level of interest shown by the person.
One suggested to observe how a person leaves
options open for themselves. Skills possessed
and skills needed combined with an understand-
ing of the person's self-awareness were
dimensions suggested by a trainee. Five

were not sure of the question.

Write a statement reflecting your belief
about the need for self-advocacy.

Twelve trainees responded to the question.
Eleven were very positive about self-advocacy
and saw the concept had affected their work.
Each of these people were concerned for the
mentally retarded and sought to improve

the living conditions of these people as

well as they could. One person did not see
self-advocacy as a need by some people.

This person commented that agencies will
still monitor the goals and objectives of

self-advocates.

 

101

Module VI Evaluation Sheets

Mean scores were given for Items 1, 2 and 3 (Table 8).

TABLE 8. MODULE VI EVALUATION SHEET - WITH RESULTS.

 

Item 1:

Item 2:

Item 3 :

I found the discussions to be:

exciting informative interesting redundant irrelevant

/ /x / / /
5 4 3 2 1

Mean Score - 3.9
The content for this module was:

too easy simple challenging difficult too hard

/ J x / / /
l 3 5 3 1

Mean Score - 4.7

As of this module my commitment to be an advisor
to self-advocacy groups has:

increased stayed
greatly increased the same decreased plummeted
/ L xx / /

 

5 4 3 2 1

Mean Score - 3.8

 

Item 4: What did you find most useful in this module?

Two commented on starting a group. One person
found the group support most useful. Another
liked the challenge to be an advisor. One
person found the discussion on political
radicalism most useful. Three liked the

group discussions.

 

102

Item 5: What did you find least useful?
One person did not like the time spent on
resolving issues of beginning a group.
Another person was distressed because of the
three cookies he ate. A trainee did not like
the Warren article.

Item 6: What would you change?
One person suggested to include a bibliography.
Another did not care for Warren article, felt
the author saw the parents as consumers of
services.

Item 7: What would you leave the same?
Discussions was one comment. The other
comment was the flexibility of the group to

explore situations that arose in the training.

-Outcome Review Data

The Outcome Review determined the congruence between
intended outcomes and observed outcomes, and observed
antecedents were reviewed in relation to the observed out-
comes (Stake, 1967). Data were sought to determine the over—
all impact the module package had upon each trainee. The
intent of the Pre-test/Post-test was to give an indication
of trainee growth in comprehension of content. The Follow-
up Interview was designed to determine the relevance of con-

tent and identify recommendations for product improvement.

 

103

Pre-Test/Post—Test Occurrences

Pre-test/Post-test face value review revealed that the
construction of the instrument was not adequately developed
for aggregation'of data. The subjective judgement of the
trainer was used to determine the extent of comprehension
of trainee knowledge of test items. A methodology was not
developed for rater reliability. This negated the possibil-
ity of determining test validity, which precluded the
determination of trainee gains in comprehension.

The test was useful as an advanced organizer. The
Pre-test provided the trainer with an impression of trainee

familiarity with training content.

Follow-up Interview Occurrences

The purpose of the Follow-up Interview (Appendix (3)
was to determine the relevance of the content of the
instructional materials and to elicit recommendations for
product revisions.

Ten of the twelve trainees who completed the training
participated in the Follow-up Interview. Ninety percent
of those interviewed had recommended the training to
others. Those interviewed included: Two casemanagers,
one residential casemanager, two therapists, one physical
therapist, two residential counselors and two residential

aides.

 

104

Consciousness raising was reported by five trainees
to have been the most important effect of the training.
Three people reported a change in attitude toward their
clients. The consciousness raising concerned the movement
of mentally retarded people as an oppressed minority who
are seeking their human rights. Three trainees stated
they were more aware of the rights of the disabled. A
deeper understanding of the advocacy relationship was
discussed by one trainee.

Four trainees discussed their increased awareness of
their role in working with the disabled. The value of
gaining the disabled persons perspective was reported by
five trainees. Four trainees.stated that they learned
alternative approaches in working with the disabled.

Four people discussed the facilitation of independence.
Seeking self-control rather than relying on external or
environmental controls was a perspective valued by four
trainees. The dignity of risk was a unifying concept for
three trainees.

Three trainees explored methods to develop
opportunities for the disabled to be responsible. These
methods involved opening the system to change and included
the legitimizing of the disabled. persons input.

Four trainees reported that they facilitated problem
solving. Two of these people stated that the training

had an effect that allowed them to take the time to listen

 

 

105

to the person and allow the person to complete the task for
themselves. These trainees resisted an urge to solve the
problem for the disabled person. Both trainees commented
that they realized the person could follow through and
solve the problem. Two people disclosed their tendency

to rescue others. Two of the trainees who assisted with
problem solving also realized that they facilitated the
disabled person to be assertive. They gave examples of
these occurrences.

The discussions of philosophy were important to four
trainees. The concept of caring in the helping relation-
ship was clarified by three of the trainees. Two people
commented about the conflict of competing philosophies
with a vast difference between those who seek independence
for the mentally retarded and those who they see as seeking
the maintenance of dependency relationShips. One person
found the discussions of philosophy distasteful.

That the phenomonological approach Was an important
perspective to consider when working with the disabled,
was a view held by five trainees. Four found this a new
perspective while one trainee appreciated the support for
an orientation she had promoted. Two people discussed
the implication that the phenomonological approach estab-
lished a new criterion for intervention and judgement about
people and programs.

The view of the service providers role to determine

the cultural norms for the mentally retarded to conform

 

106

to a middle class view of acceptable behavior was altered
by four trainees. The trainees were concerned that some
service providers assume the responsibility to control the
behavior of their clients and limit opportunities for the
client to exercise judgement, responsibility and self—
control. The value of people gaining the power to make
decisions about their lives was noted by one trainee as an
alternative approach to the development of self-control.

Three trainees were assisting staff and disabled
persons at their sites to start self-advocacy support
groups. One of these trainees was starting a support group
for severely physically disabled people. The people this
trainee was working with had expressed a need to become a
self-advocacy group.

House meetings were the forum used to develop a
self-advocacy group in a residential program. Two trainees
shared their perceptions and expectations for the develop-
ment of a residential group. One trainee had difficulty
in accepting the level of discussion of the group. She
preferred the exploration of issues. Both trainees were
concerned about their expectations and influence with the
residents of the home.

Six trainees reported that they were working with
individuals to develop self-advocacy skills. Three
trainees stated that they never intended to be involved

in self-advocacy groups. They preferred to work on a

on

ho

gI

t1

 

107

one-to-one basis with people. One person could not envision
how to gain the time necessary to advise a self-advocacy
group and maintain her current position. She did not

think it was feasible to alter her work load. A resident
counselor saw herself as a role model to other staff at

the site where she worked. For her the training provided
ideas for staff development. She was specifically inter-
ested in developing problem solving and assertiveness among
the residents, and these residents expressed no interest in
forming a support group.

Staff presentations were discussed by four trainees.
These trainees were interested in developing conditions for
the acceptance and encouragement of self-advocacy. They
talked about their supervisors'favorable reaction to the
content they were planning to present.

Three people commented that the sequence of the
presentation was good. One said that she was not sure at
times how the different concepts fit together but they
fit perfectly. Two trainees stated that occasionally the
discussion lost direction and consequently they had dif-
ficulty fOllowing the development of concepts.

One trainee did not alter her perceptions about the
mentally retarded.

One trainee saw value in close personal relationships

based on natural affinities.

 

108

Trainee interaction was perceived as an important
process of the training. Five trainees commented that the
sharing of everyday experiences allowed them an opportunity
to think through situations. One person stated that she
enjoyed listening to the ideas of the others. Two other
trainees wanted more structure in the discussions. Another
person commented that the frank discussions and exploration
of ideas was a real eye opener for her. The interaction
with other trainees provided one person an opportunity to
re-evaluate her role in working with others. She stated
that she felt a common bond with the other trainees.

Two people discussed trainee frustrations that were
expressed during the presentation sessions. They felt
the frustrations were barriers being encountered to open
themselves and the system. One person who was willing to
express and discuss her frustrations suggested another
forum for this disclosure and that some trainees did not
separate their job frustrations from the training goals.

The trainees commented on the value of the reading
material. Two people were critical of the P.L. 94-142 and
Section 504 article.

The module design was commented on by seven of the
trainees. Seven did not like the Assessment Sheets, Impact
Questionnaires and Module Evaluation Sheets. Five commented

that they just filled them out for the trainer and found

 

 

 

109

little learning in the experience. Three commented that
the directions were confusing. Two remarked that they
were tired and by the end of the presentation session did
not feel like concentrating. One found the goals and
rationale useful to organize her thoughts.

Five trainees suggested to provide more direction to
assist trainees to use materials. One person wanted more
role playing exercises; one person wanted less. Another
suggested an increase in intimacy exercises. One person
wanted more structure.

Five peOple suggested an increase in the amount of
time for the training, with specific suggestion of two
hours a.day,two days a week. Another person recommended
a two or three day retreat. Two people would have preferred
the training in the morning.

Table 9 summarizes the Self Report of Theme Application.
As can be seen, ten trainees acted to promote self-advocacy
at their work sites. All of the trainees stated in the
interview that they did something to demonstrate that they
functioned as an advisor to a mentally retarded person.
Eight trainees interviewed assisted a Self-Advocate to speak
on their own behalf. Four of the trainees had facilitated
a self-advocacy group, while six did not act on this theme.
Nine of the trainees made claims-that they promoted con-
sumers rights. There were no data for the tenth person.

Seven trainees acted to develop opportunities for mentally

110

TABLE 9. 'SELF REPORT THEME APPLICATION

 

Module

Theme

Acted On

No Action

No Data

 

II

III

IV

VI

Self-Advocacy at the Service Site.
Trainee promoted Self-Advocacy
at work site.

Role of Advisor to Self-Advocates.
Trainee demonstrated an advisory
role. ‘

Facilitating the Self-Advocate.
Trainee worked with a Self-
. Advocate to speak for self.

Facilitating Self-Advocacy Groups.
Trainee facilitated a Self-
Advocacy Group

Developing Rights and Responsibil-
ities. Trainee promoted consumer
rights. .

Trainee developed opportunities
for consumers to be responsible.

Starting a Self-Advocacy Group.
Trainee was involved as an advisor
to a self advocacy group.

I—'
O

10

 

 

111

retarded people to be responsible. There were no data for
three trainees. Four trainees were advisors to self-
advocacy groups. Six trainees were not involved with self-
advocacy groups.

The extent of involvement was not determined. The
reliability of the claims was not varified. Measurement

devices were not developed for those purposes.

CHAPTER FOUR

SUMMARY, DISCUSSION, RECOMMENDATIONS FOR
REVISIONS AND IMPLICATIONS FOR FUTURE RESEARCH

Summary

The general purpose of this project was to develop
instructional materials to be used in the training of
service providers as advisors to self-advocates. In
order to accomplish this purpose, three tasks were
identified: Product Development, Product Implementation

and Product Evaluation.

Product Development

 

The background for the development of materials
involved a review of the literature in the field of mental
retardation. The literature review,integrated with personal
experience, provided the philosophical foundations for this
project with supporting social, psychological and legal
evidence.

Expert opinion was sought to identify the contents.

Two events were planned to gain the ideas and perspectives

of self-advocates, self-advocacy advisors and advocates.

112

113

The first event was a National Survey of self-advocacy
advisors and self-advocates. The results of the survey were
used to identify content ideas and resources.

The second event was a workshop of advocates and one
self-advocate who reflected upon the results of the survey.
Their task was to refine and identify ideas and issues to
be included in a package of instructional materials.

A module format was chosen for organizing the
instructional materials. Each module had a theme, rationale,
goals, objectives, activities and readings. There were six
modules developed to reflect the themes of the identified

content. The six modules comprised the module package.

Product Implementation

The module package was implemented in six presentation
sessions. Each presentation session corresponded to the
module with the related theme, objectives and activities.
The presentation sessions were conducted weekly for six

weeks. Each session was designed to be two hours long.

Product Evaluation

The objectives for Product Evaluation were to make
recommendations for product revision. The Product
Evaluation was conducted during and after the field-test

of the module package.

114

A number of data sources were designed to field-test
the instructional materials (Module Package). A Pre-test
and Post-test were developed to measure selected content
knowledge. Each module contained an Assessment Sheet,
either an Impact Questionnaire or Skill Sheet and a
Module Evaluation form. Other data sources included:
anecdotal notes and a participant observer. These data
sources were used to determine: the appropriateness of
individual module content, the impact of the seminar
session on trainees, the continuity of content design
and trainee gains.

A Follow-up Interview was conducted with each trainee
one month to six weeks after completion of the training.
The purpose of the interview was 1) to determine how or
to what extent the trainees applied the content of their
respective work situations, and 2) to determine what aspects
of the content was most relevant to the trainees.

A Process Review was conducted on the presentation
sessions to make comparisons between the intended module
goals and activities with session occurrences. The Out?
come Review was an attempt to determine the relationship
between test gains, comprehension of content and application

of content made by trainees to their work situation.

115

 

Results of Product Evaluation

The results of the Review Process indicated that the
presentation session occurred as intended, suggesting
congruence. Discrepancies of the intents and occurrences,
when they appeared, were due to time constraints, excessive
testing and the desire of trainees to include content that
was beyond the intended scope of the presentation session.

The data sources for comprehension were not adequately
developed to provide reliable data. These measures were
useful in identifying additional aspects of the instructional
materials to be evaluated. Attitudinal measures may be a
better indicator of trainee gains than cognitive gains.

The Follow-up Interview provided data about the
application of content to the work situation. Only four ,
of ten trainees were involved with self-advocacy groups at
the time of the Follow-up Interview. Application of content
to start a self-advocacy group did not occur for seven of
the trainees interviewed. However, trainees reported that
they had promoted self-advocacy on individual levels and
sought to encourage co-workers to embrace the concepts of

self-advocacy.

116

Discussion

Philosophical Issues

 

Understanding mental retardation from a phenomonological
perspective requires a suspension of one's own assumptions
and beliefs (Taylor and Bogdan, 1977). This perspective
was important for many of the trainees. They discussed
an alternative approach that assisted them to transcend
their assumptions (Blatt, 1977). There was.the realization
that this perspective could facilitate independence
(Goldenberg, 1978).

WOlfensberger (1972) discussed the seven myths of
mental retardation. A review of the presentation sessions
and follow-up interviews gave indications of the insidious
nature of these myths. Infantilizing actions perpetuate
the myth of the eternal child. Treatment and programming
could have the effect of maintaining the image of the
diseased organism.‘ Efforts aimed exclusively to control
behavior may maintain the myth of a menace to society.

The process of the training sought to bring about
changes in how trainees perceived the mentally retarded.
Perceptions did change for some but the stigmatizing

effects of cultural myths were also prevalent.

Social Issues

 

Consciousness raising about the mentally retarded as

an oppressed minority occurred for five trainees. They

117

expressed an understanding of the stigma of being labeled
mentally retarded (Barber, 1968): Wolfensberger, 1972;
Blatt, 1977; Katz, 1976). Three people stated they had a
change in attitude toward the disabled.

Wolfensberger (1972) discusses the difficulty most
people have with change, often reacting to change rather
than taking a pro-active role. The mentally retarded
person has two limitations to overcome. One is the dis-
abling condition itself and the other is imposed by
society. Changing the perceptions of those who provide
services of the disabled is part of the change process.
Perceptions held by service providers make it difficult
for them to see an opportunity to promote change- Two
trainees discussed their frustration with opening them-
selves and the system.

Goldenberg (1978) discussed the difficulty he
encountered in training community organizers. He attrib-
uted part of the difficulty to the background and forma-
tive experience of the trainee. These early experiences
generate many perceptions (Combs and Snygg, 1959). A
trainee may embrace the ideas and ideals of empowering the
disadvantaged yet may not be able to apply what has been
learned. For example only two trainees had started new self-
advocacy groups.

The above perspective places the responsibility
for change on the trainee. ' This may be unfair since

the Module Package content or the process of

118

instruction may not have been adquately developed to enable
the trainee to learn what was necessary to bring about

change to the system.

Role of Advisor

 

The service provider may not be in a suitable position
to be an advisor to self-advocates. They may have too
many conflicts of interest to enable them to facilitate
groups of people to assert their rights and provide a
service. This concern was expressed by two respondents to
the National Survey and a workshop participant. It also
appears in the literature (WOodyard, 1980).

Five trainees stated that the training provided them
an alternative perspective in their relationships with
disabled persons. The necessity to rescue, control, treat
or program was challenged. A new role was offered that
could assist service providers and consumers to free them-
selves of the cultural myths of mental retardation.

Service providers who viewed their role as an advocate
for the disabled are more likely to be in a position to
promote self-advocacy. Self-advocacy groups represent one
form of advising and may be limiting in terms of the needs
and learning styles of individuals. Some service providers
can facilitate groups and can alter their job role suffi-
ciently to follow the self-advocacy group model, while

others cannot.. Service providers can promote self-advocacy

119

with individuals resulting in effective ways to gain
services, employment, housing or recreation. For example,
all of those interviewed had at least once worked with an
individual to assist them to advocate for themselves. Case-
managers can cultivate self-advocacy by encouraging partici-
pation of the person in their own program planning. This
would include meeting with the person prior to the meeting
and working with them to identify their goals and objectives.
Service providers in day programs can facilitate resource
development and utilization. Those in residential programs
can work with individuals or groups for house meetings.

The desire for democratic principles to be applied to
the treatment of the disabled was evident with those inter-
viewed. Four trainees saw the value in the development of
self-control. This is viewed as the recognition for self-
determination of the disabled (Goldenberg, 1978; Rank, 1956;

Nirge, 1972).

Recommendations For Product Revision

Recommendations for this project are organized
according to the three major tasks, namely: Product
Development, Product Implementation and Product Evaluation.
Each of these tasks had areas where revisions were found to

be necessary.

120

Product Development

 

An introduction and orientation to the Module Package
is needed. This will provide an explanation of the uses
of the modules and assist trainees in their planning. In-
cluded will be the overall goals, a rationale for the come
plete package, an explanation about data collection will
also be a clarification of the expectations of trainees.

One function of the Module Package was to guide the
trainer in the presentation of the training sessions. The
modules served as a general guide, but greater specificity
was desired. Presentation notes were developed to serve
this function. These notes further defined and outlined
the content. The development of presentation notes
utilized the concepts and activities in the modules along
with data from the module evaluation instruments. These
notes represent the beginning of a trainer's manual.
Further work is required to develop a trainer's manual.

Reading materials could be included in each module,
and not listed as indicated in the Module Package. This
would enable trainees to read at their own rate.

Discussions, group interaction and role play activities
were positively reacted to in each module. This suggests
that the presentation sessions were useful to the trainees.

The training could be individualized for each trainee.
This would assist the trainees in their attempts to apply
the content to their work situation, a difficulty noted

in the results.

121

The goals, rationale, objectives and activities of
each module could be reviewed to make corrections in lan-
guage and content. Additional objectives need to be
written such as: In Module I, the first objective listed
under the first goal statement was not congruent. The
second paragraph in the rationale was found to be vague.

The inclusion of a bibliography in the Module Package
was recommended by a trainee. A bibliography would allow
trainees to explore areas of interest. .

A recommendation that did not result from the data
sources,but was realized in conducting the field-test, was
that adjunct audiovisual materials could have been useful.
Movies, slide tape sets, photographs and tape recordings
would be sought or developed to elaborate and exemplify
concepts.

The Follow-up Interview provided data that suggested
administrators and supervisors were seeking information
about self-advocacy. A module could be developed to
facilitate the change process within an organization. Such
a module could include statements of philosophy, psychology
and an activity that would assist in the generation of
ideas to implement the conditions that would allow for the
development of self-advocacy.

The Pre-test should be removed from the Module I
presentation session. Sufficient time was needed for the
elaboration of content. Modifications were made to the

activity card exercise.

122

Module II could be expanded into two sessions. This
would allow sufficient time for the presentation of the
content. Additional materials could be included in this
module on the qualities of a caring relationship. A
differentiation needs to be made between the concepts of
caring about another and taking care of another. The
negative consequences of infantilization could be explored
in a discussion with examples of adult-to-adult
communication.

Content could be developed that further separates the
concepts of taking care of people and exhibiting care for
another person. The first example is infantilizing,which
places care takers in a controlling, domineering and power-
ful position over another person. The second position is
showing care for the well-being of anothen,which reflects
an attitude of compassion. Showing care for another places
people in an equal role with the message that people exhibit
care in an adult-to-adult manner, not parent-to-child. The
participant observer expressed this as the relationship of
friends meeting tOgether over common concerns.

Module III could be expanded into two presentation
sessions. This would provide enough time for the presentation
of information and the completion of activities. A handout
on skills of self-advocates needs to be developed. This
will facilitate trainees in their understanding and identi-
fication of the needs of self—advocates. An activity could

be developed to further learning. An assessment instrument

123

could be developed to enable service providers to make
referrals or advice to their clients when they express a
need to be self-advocates.

Module IV could be expanded into two presentation
sessions for the same reasons as stated above. An activity
on problem solving could be developed so trainees would
differentiate between problem solving and decision making.
Further elaboration needs to be made on the ways a self-
advocacy group facilitates the development of judgement.

Laws that effect the rights of the disabled could be
presented in Module V in a sufficient manner. A list of
consumer rights would also be added to this module. The
recipient process would also need to be elaborated in this
module.

In Module VI, a handout on suggestions for starting
a self-advocacy group would provide trainees step-by-step
directions. The inclusion of trainees in an advisor sup-

port group would be an option offered in this module.

Product Implementation

The results of the Site Interest Survey were negligible.
The system used to disseminate information about the training
relied upon personal contacts and supervisors sharing
information about the training. Another system needs to
be developed that would contact a larger audience. A flyer
and training brochure could be developed to provide prospec-

tive trainees an opportunity to participate in the training.

124

A number of options were suggested for revision to the
time schedule. The nature of the group could determine the
time frame for the next presentation of the Module Package.
Prospective trainees could express a preference for train-
ing time when responding to the flyer, at which time they
would be making a commitment to participate in the training.
Some of the options include: One and one-half hour sessions
from 3:30 to 5:00 p.m., morning two hour sessions, one-half
day sessions and day long sessions. A weekend retreat may
also be an option.

Other options could be to develop the Module Package
as an inservice course that could be given on a credit/non-
credit basis. This would possibly increase the numbers of
potential trainees. A pre-service college course could be
developed from the Module Package. This could become an
elective for students in education, social work and psychol-
ogy. This would enable students to become familiar with
alternative roles before they enter the field. The course
structure would also structure the time and direction of

presentation sessions.

Product Evaluation

Trainee criticism of the Pre-test/Post-test, Assessment
Sheets and Impact Questionnaires (Appendix 13), suggests
major revisions are needed on these instruments. Standard

measurement techniques are needed so that data could be

125

aggregated. This would make computation easier and allow
for reliability and validity studies. The same information
would be gathered in less time.

The value of cognitive gains may be secondary to changes
in attitudes of the trainees. Three trainees discussed
their difficulties in applying the content to the field
situation. Attitudinal measures could provide data that
would assist in understanding the difficulties trainees were
experiencing.

The Pre-test could be used as an assessment instrument
for the trainer and trainee to plan an individualized train-
ing format for the trainee. Data from the present Pre-test/
Post-test could be used to develop an effective assessment
instrument which would be administered before training. The
Post-test would be eliminated from the evaluation process
because it's emphasis would be on assessment with joint
planning.

The Impact Questionnaire, Module Evaluation Sheets and
Assessment Sheets could be incorporated into one data source.
Such a Module Satisfaction Checklist could incorporate the
useful items from the previous data sources, compiled in
a manner that would allow for the aggregation of data. This
would decrease confusion and time required for data collec-
tion. Certain items could be standardized on each Module

Satisfaction Checklist to allow for module comparison.

126

The Skill Development Checklists should be replaced
with more reliable checklists. The same checklist should
be used in each module so trainees would have an opportunity
to become familiar with the instrument.

The Supervisor Attitudes Assessment from Module IV
did not prove to be useful as a measure of leadership
style. -It may be more suitable as a training aid and
could be incorporated into a training activity.

The participant observer had an effect on the trainer.
Reviews of each session heightened the trainer's awareness
and understanding of the experiences of the trainees. The
discussion by the trainer and participant observer involved,
at times, the exploration of assumptions and beliefs.
Understanding the difference in perspective was helpful in
creating an effective learning environment.

A less intrusive use of a participant observer is
recommended. The role in relation to focus on congruence of
intents and occurrences would be changed. Feedback would not
occur after each session. The trainer would not be privy
to the data until the field-test was complete. The partici-
pant observer and trainer would be less likely to influence
each other during the process of instruction. This could .
result in a deeper understanding of the effects of staff
development activities and specifically these instructional

materials.

127

The uses of participant observers and anthropological
research methodologies are well suited to the study of staff
development in assisting staff to go beyond cultural myths
of mental retardation.

The Followeup Interview provided some interesting data.
The results, largely self-report data, indicated that
trainees accomplished many of the major purposes of the
training. Although not measured, there appeared to be
changes in attitude and in the perspective the trainees
took when working with the disabled. Unfortunately, there
was no way to determine the motivation or accuracy of
trainee claims. Additional data sources are needed to
determine the validity of the Follow-up Interview.

A Satisfaction with Readings Checklist could be
developed to determine trainee reactions to the specific
reading material. Feedback would be needed to determine
whether the reading material was adequately suited to the
learning needs of the trainees.

Attitude change measures are needed to determine if
there is a change in how trainees perceive the disabled.
Perceptions of ownership, dependency and need to control
others could be useful in understanding the dynamics of
the advisor's relationship with the disabled. This may be
a more important measure of growth than skill development

or cognitive gains.

128

The problems of service providers initiating and
becoming involved with self-advocacy groups may have been
related to the limited context in which the training took
place. The training was conducted on a group basis with
a pre-determined structure that did not provide for indi-
vidualization. The trainer did not assess the conditions
of trainee work situations. There were no demonstrations
in the field of self-advocacy groups for trainees to model.
Transfer of learning should have been designed into the
project, thus providing service providers with assistance
in their efforts to initiate self-advocacy groups.

Follow-up Questionnaires could be developed to determine
how trainees applied the content of the Module Package to
their work situation. In addition to the trainee, such
questionnaires could be given to supervisors, service
recipients and other service providers for purposes of

validation.

-Implications

Differences in learning styles and teaching styles
suggests that those service providers who prefer individual
work could be matched with self-advocates who preferred to
work on an individual level. The conditions for learning

to be an advisor and a self-advocate would be different.

129

Would those self-advocates who chose to become a
self-advocate independent of a group develop different
self-advocacy skills? Does the self-advocacy group main-
tain the disabled person in stigmatizing roles and relation-
ships? What effect does the group experience have that
can not be matched by an individual experience?

Personal experience in working with self-advocacy
groups for three years has indicated that self-advocacy
groups go through various stages of development. These
stages are not determined by time,but demonstrate the
growth the self-advocates experience as they learn to con-
duct their own affairs. Research to bring about an under-
standing of the stages of self-advocacy group development
may be useful for the group in their planning and development.

Heath (1978) claims that self-advocacy develops group
identity and independence. Observations made while work-
ing with people as they became self-advocates supports
Heath's contention. (Further research is needed to
elaborate more specifically on those conditions that
increase group identity. Additional research is needed
to determine those aspects of independence developed through
self-advocacy.)

A Self-Advocacy Assessment scale would give service
providers and advocates another method to identify the
needs of a self-advocate. There are pros and cons to the

use of an assessment device when applied to the concept of

130

self-advocacy. An instrument like this could assist a
person to make the necessary decision to allow a disabled
person to develop as a self-advocate. An instrument of
this nature could be used to program self-advocacy and
remove the chance for a disabled person to make their

own choice about becoming a self-advocate.

What happens when a number of service recipients
become self-advocates? What is the effect on the service
agencies? Are there changes in policy and practice in the
treatment of the mentally retarded when there is a self-
advocacy group in a program? Does self-advocacy bring
about better service provisions? These questions seek
to determine the effect self-advocacy has upon service
agencies.

The Module Package was presented as an inservice to
service providers. The design of the materials did not
allow for individualization. It became apparent in the
training that the trainees had different needs and styles
of learning. Staff development efforts need to be designed
to accommodate for these individual differences. These
instructional materials were presented to the trainees
and they were expected to implement the content. A more
effective approach would be for the trainer to assist the
trainees to apply the materials. This would involve
individual and group work with trainees. Individualizing
staff development efforts may increase the effectiveness of
the group process. These two approaches have the potential

to be combined.

131

Looking ahead to potential uses of these instructional
materials it should be noted that service providers, adminis-
trators of service agencies, and professors of Education,
Social Work, Human Ecology, Sociology, Psychology, and Anthro-
pology could incorporate aspects of the content.

These materials could be modified for continuing
education courses for inservice staff development, and
designed to addressed the developmental needs of administra-
tors, staff, and volunteers.

Residential programs could use these materials to promote
democratic practices in group homes. Home operators could
provide opportunities for residents to choose to participate
in the operation of the home. This could include: meal
planning and preparation, determination of cleaning and house
keeping duties, interior decoration, and participation in
leisure and recreation activities. Negotiation and compromise
are some skills this environment could foster.

Service providers who assume an advocacy role may
increase service recipients level of independence. Responsi-
bility for planning and decision making gradually shift as
the disabled person chooses to take greater control of their
life. The advocate as advisor facilitates growth and change.
An understanding of the context in which change occurs is
important. For example: If a service provider facilitates
an individual to become more assertive and that individual

encounters others who wish to maintain dependency

132

relatonships, the disabled individual is at risk. This
could result in repercussionstx>the service provider. On
the other hand if a service provider is aware of a disabled
person's need to become a self-advocate and does not respond
to the need then they have avoided an opportunity to grow,
as well as denying others that opportunity.

There are risks inherent in the development of
self-advocacy. This is a relatively new concept and there
will be trial and error. Yet, we cannot shirk the responsi-
bility to promote growth and independence. The fear of con-
flict is no reason to avoid the development of democratic
practices for the mentally retarded. The encounter of the
conflict if handled with sensitivity, tact, and understanding
can result in the advancement of the field, as well as,
agencies, systems, and individuals.

The advisor does not own the self-advocate or the group.
The advisor cannot become so dedicated to the promotion of
self-advocacy that they lose their perspective. Demands
placed on self-advocates to live up to the expectations held
by advisors become counterproductive to the growth of the
self-advocate.

Administrators of human service agencies can provide
support and resources for the inclusion of self-advocacy.
Support and resources are necessary to develop the attitudes
and skills of advisors. Administrative support may be
necessary to reduce the risk to individual advisors and

self-advocates. Administrative resources are necessary to

133

maintain a commitment and continuation of opportunities
for self-advocacy.

Advocates and service providers can rely upon
self-advocates to alert them of violations of recipients'
rights. The service recipient must be included to elimi-
nate abuse and neglect. Their complaints are legitimate
and can be used to improve the service system.

The concepts within the instructional materials could
be useful to students in the social sciences. They can
become sensitized to issues faced by the disabled as they
seek their rights. The problem of a student understanding
the relevance of law and legislation can be clarified through
an exploration of service recipients' struggle to live as
respected members of society.

Coursework could be incorporated that would provide
students an opportunity to appreciate the difference between
teaching and facilitation of learning. From this perspec-
tive college students could begin to conceptualize the
complexity of roles they may assume.

Self-advocacy is a felt need. Agencies designed to
meet the needs of the disabled can provide conditions that

allow self-advocates to direct the course of their lives.

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APPENDICES

APPENDIX A

National Survey of Advisors

140

618 Forest
East Lansing, Michigan 48823
(517) 694-5098

I am developing instructional materials to train advisors to
self-advocacy support groups. This project is being conducted be-
cause of my belief in the psychological and social benefits these
groups provide to developmentally disabled and mentally retarded
people as they become integrated into society. The development
and evaluation of these instructional materials fulfill the require-
ments for a doctoral dissertation in the field of Curriculum‘and
Instruction at Michigan State University.

In order to determine the content for these instructional
materials, I am surveying self-advocacy group advisors. Your
input is needed in the quest to further understand and delineate
the skills and knowledge used by advisors. You can provide valued
information about materials, readings and experiences useful in
the training and development of advisors and self-advocacy groups.

The Association for Retarded Citizens has recently distributed
a listing of self-advocacy groups. Your name and address is included
with the suggestion for a sharing of ideas that could facilitate the
formation of other self-advocacy groups.

Please take a few minutes and read the enclosed position paper
considering the question, "What would be useful in a training program
for advisors of self-advocacy support groups?" Note your salient
ideas and return in the self-addressed envelope. '

If you desire any information, please feel free to write or
call. Thank you for your time and energy.

-.

Sincerely,

John S. Rowlson

Enclosures

141

THE EFFECTIVENESS OF INSTRUCTIONAL MATERIALS FOR
ADVISORS OF SELF-ADVOCACY SUPPORT GROUPS

POSITION PAPER

Legal and social science principles have converged in Section 504
of the Rehabilitation Act of 1973 and P.L. 94-142. Both have provisions
that the least restrictive alternative should be provided to the handi-
capped, including work, educational and residential settings (Kiley,
1981). The values inherent in these laws are consistent with those
espoused in the Normalization Principle, stressing the value of handi-
capped persons being able to live as much like the rest of society as
possible (Kramer, 1974). Conditions are being created where disabled
persons experience the normal respect entitled any human being
(w01fensberger, Nirge, 1972). Their choices, wishes, desires and
aspirations are considered in order for them to determine direction for
their lives.

Advocacy

The right to life, liberty and pursuit of happiness may be self-
evident, but has never been self-enforcing. (Hallgren & Norsman,
1977)

The struggle to protect and exercise basic human rights is dependent
upon the economic and human resources available. Members of the advocacy
movement believe in the need to provide these resources to people with
developmental disabilities, establishing systems to protect and safeguard
the rights and interests of the disabled. Advocates are those persons
who intend to represent and advise regarding the rights, interests, and
needs of people with disabilities (Addison, 1976). Advocates attempt to
bring about social justice for those who have been or represent the
potential to be treated unjustly. The advocates' goal is to provide the
kind of involvement that results in persons becoming self-advocates.
Their focus is on facilitating the learning of self-advocacy skills for
an independent as possible lifestyle (Dybwad, 1980).

Self-Advocacy

Self-Advocacy is that component of the advocacy movement which is
directed toward increasing the knowledge and understanding of
basic human/civil rights and responsibilities and is a pre-condi-
tion to meaningful citizenship. . . . Self-Advocacy is defined

as advocacy by an individual whose rights, interests or needs

are at risk of being diminished, in order to represent his/her
own rights and interests and speak on his/her own behalf.
(Hallgren & Norsman, 1977)

2

Asserting one's personal rights involves expressing thoughts,
feelings and beliefs in direct, honest and appropriate ways which do
not violate another person's rights (Jakubowski, 1976). Assertive
behavior by persons seeking their rights are the interpersonal skills
of the self-advocate. Appropriate assertiveness is learned, and re-
quires a relevant social context. Individuals can become socialized
by being able to communicate and protect their self-interest. Social-
ization increases the potential to relate with others in society, as
well as developing self-respect and identity (Heath, 1977).

Self-Advocacy Support Groups

Individuals may need the support and encouragement of others to
be self-advocates. Support groups provide additional power and resources
to the individual. The group is useful in maintaining continuity of
affective outcomes including increased motivation, self-respect, and
self-acceptance. The development of cognitive skills (problem solving,
memory, retention), organizational abilities, and leadership are also
increased (Heath, 1977).

The development of effective citizenship is brought about through
the interaction of people facing concrete, real life problems with each
other at a site location that has meaning and is easily accessable.

The identification self-advocates have with the site provides a context
for participation in real life problems (Curtis, 1974). The issues the
support group deal with are relevant to their lives and stem from the
dynamics of the site. The involvement by persons in their own programs
and sites increases their skills as self-advocates through participatory
democracy. The sense of efficacy, competence, and personal power is
developed and strengthened as self-advocates participate in meetings
and on committees, defining the group's purpose and goals, choosing
leaders, planning activities, and providing one-an-other emotional
support. The organization of the mentally retarded into support groups
and coalitions is a way to self-representation and self-advocacy. They
can exercise their rights as citizens, and gain direct access to needed
services (Menolascino, 1976).

Advisors to Self-Advocacy Support Groups

The advisor has an important role in assisting in the formation and
organization of a self-advocacy support group. People desiring to be-
come self-advocates often do not have the knowledge and skill needed to
facilitate the group process. The advisor is a member of the group with
similar rights and obligations, and serves as a model for others to
observe and learn from in developing a supportive atmosphere. An advisor
may make suggestions to assist in moving the group process along, to
clarify communication, to insert structure, to teach group members to
be self-advocates and to be sensitive to the needs and direction of the
group and its members.

142

The Need for Advisor Training

The challenges encountered as a result of discovering what is
necessary to do as an advisor is rewarding, and painful. In many
programs around the country there are people, who in responding to
the needs of the disabled, have chosen to facilitate the development
of self-advocacy support groups; sometimes feeling alone, without a
clear direction. Heath (1978) discusses the time spent on defining
the role of the advisor. This is a way to determine responsibility
and purpose, but requires the ability to withstand ambiguity. The
specialized talents of those who can respond in such a way while
involved in creating support groups must be lauded. They have broken
through a frontier in the field of mental retardation.

The idea of self-advocacy is being disseminated, with many persons
desiring to become involved. Some, with their "hearts in the right
places," do not know where or how to proceed. They may need to be
able to "tap" on the collective experience of those who have gone be-
fore them, and learn from the trials and tribulations of others.

There are few materials presently available to assist in the
training and development of advisors to self-advocacy support groups.
Information, ideas, techniques and skills must be shared between and
among advisors, and passed on to others seeking this knowledge.
Instructional programs are needed to enable people to become advisors
thus increasing the number of developmentally disabled and mentally
retarded persons becoming self-advocates.

143

BIBLIOGRAPHY

Addison, Max R. Special Report, Advocates on Advocacy: Defining
Three Approaches, Citizen Advocacy, 1979.

Dybwad, Gunner. "The Community Responsibility for Mentally Disabled
Individuals." Community Mental Health Board, Hilton Inn, Lansing,
Michigan, May 9, 1980.

Hallgren, Betty & Annette Norsman. Life, Liberty and the Pursuit of
Happiness: A Self-Advocaoy Curriculum. Wisconsin Coalition for
Advocacy, 1977.

Heath, Dennis L., Advisor. People First: Develops Group Identity,
Independence. Polestar, 1978.

Heath, Dennis and Others. People First: Evolution Toward Self-
Advocacy; Deficiency Mental/Mental Retardation. V28, N2, AP,
1976.

Jakubowski, Patricia & Arthur J. Lange. Responsible Assertive Behavior
Eggpitive/Behavioral Procedures for Trainers. Research Press,
1976.

Kiley, Michael. Community Mental Health Board, State Police Training
Center, Workshop, Lansing, Michigan, February 6, 1981.

Kramer, Beth. Silent Minority. Presidents Committee on Mental
Retardation. Washington, D.C.: Department of Health, Education
and Welfare, 1974.

 

Menolascino, Frank. "The Future of the Handicapped Person and His
Community." Paper presented at the world Congress on Future
Special Education, 1978.

Wolfensberger, W01f; Nirge, B.; Olshansky, S.; Perske, R.; & Ross, P.

The Principles of Normalization in Human Services. Toronto:
National Institute on Mental Retardation, 1972.

144

145

"What would be useful in a training program for advisors of self-
advocacy support groups."

146

MICHIGAN STATE UNIVERSITY

 

COLLEGE 0" DUCATION EAST LANSING - MICHIGAN - 48824
DEPARTMENT or ELEMENTARY AND SPECIAL EDUCATION

V

T0: Self Advocacy Group Advisorsf 2.1/

r ,I .
FROM: Donald Burke \! 3))“
fivé' ’ i

The enclosed position paper and request for input is being sent to you
because of your interest in self advocacy for the developmentally disabled.
This request for assistance is an initial step in a dissertation project
designed by John Rowlson which has been approved by his doctoral committee.

As dissertation advisor, I thank you in advance for your interest and
cooperation.

DB:jb

Enclosure

MSU is an AIM Action/Equal Opportunity Institution

APPENDIX B

Letter of workshop Intent

147

2365 Jarco Dr.
Holt, MI 48842
(517) 694-5098

I am pleased and honored that you are willing to share
your time and energy by participating in a workshop to identify
the content of an instructional program to train advisors to
self-advocacy support groups. There are eight people from
around Michigan who have made a commitment to attend. This
is an opportunity to engage in a meaningful dialogue to
expland our views in determining a well thought out training
program.

This workshop is the third and final step in the process
of developing content, resources, goals, and activities for
the advisor instructional materials. The first step began
with a review of the literature and ended in a position
paper. The second step was a national survey of 85 advisors
designed to ascertain "What would be useful in a training
program for advisors of self-advocacy support groups?"

The content will be field-tested in April and May, 1981.

I foresee an exciting and rewarding day and am looking
forward to working and creating with you. Thank-you for
your interest and support.

Sincerely,

John Rowlson

8:45
9:00

9:15

10:30

10:45

12:00

12:30

12:45

2:00

2:30

2:45

t0

t0

t0

t0

to

to

t0

t0

t0

t0

to

10:

10

12

12:

12

148

WHAT WOULD BE USEFUL IN A TRAINING PROGRAM

 

FOR ADVISORS OF SELF-ADVOCACY SUPPORT GROUPS?

 

DATE:

:00

:15

30

:45

:00

30

:45

:00

:30

:45

:00

WORKSHOP AGENDA

March 27, 1981 TIME: 9:00 AM to 5:00 PM

LOCATION:

BRETTON SQUARE INDUSTRIES
2365 Jarco Dr.
Holt, MI 48842

Coffee and Rolls

Introductions

PART I

Break

IDENTIFYING CONTENT
A synthesis of information from survey of
Advisors.

Continue identifying and developing content
At the end of this session we will have a
categorized and prioritized list of the
ideas to be included in the training program.

LUNCH PROVIDED

PART II ORGANIZING CONTENT

Break

A review and revision of goals of training
program

A review of materials and resources
Please bring your materials and other

 

resources. The results of this session

will be a list of materials and resources
with recommendations.

Presentation of Module design and format

The creation of training activities.

Our product for this session will be train-
ing activities congruent with content, and
utilizing materials.

149

-2-

4:00 to 4:45 "Etcetera" An open discussion to "tie-up
loose ends."

4:45 to 5:00 Closing

APPENDIX C

Workshop Packet

.150

618 Forest
East Lansing, Michigan 48823
(517) 694-5098

I an developing instructional materials to train advisors to self-advocacy
support groups. This project is being conducted because of my belief in the
psychological and social benefits these groups provide to developmentally
disabled and mentally retarded peeple as they become integrated into society.
The development and evaluation of these instructional materials fulfill the
requirements for a doctorial dissertation in the field of Curriculum and
Instruction at Michigan State university.

Inorder to determine the content for these instructional materials, I am
surveying self-advocacy group advisors. Y0ur input is needed in the quest to
further understand and delineate the skills and knowledge used by advisors.
You can provide valued infbrmarion about materials, readings and experiences
useful in the training and develOpment of advisors and self-advocacy groups.

The Association for Retarded Citizens has recently distributed a listing
of self-advocacy groups. Your name and address is included with the suggestion
for a sharing of ideas that could facilitate the formation of other self-advocacy

groups.
Please take a few minutes and read the enclosed position paper considering
the question, "What would be useful in a training program fer advisors of self-_

advocacy support groups?" Note your salient ideas and return in the self-
addressed envelOpe.

If you desire any information, please feel free to write or call. Thank
you for your time and energy.

Sincerely,

/jf ,/ ’3 /

,./ W- V“. "W
”'JOhn S. Rowlson

Enclosures

151

THE EFFECTIVENESS OF INSTRUCTIONAL MATERIALS FOR
ADVISORS OF. SELF-ADVOCACY SUPPORT GROUPS

POSITION PAPER

Legal and social science principles have converged in Section 504 of the Rehabilita-
tion Act of 1973 and P.L. 94-142. Both have provisions that the least restrictive
alternative should be provided to the handicapped, including work, educational and
residential settings (Kiley, 1981). The values inherent in these laws are consistent
with those espoused in the Normalization Principle, stressing the value of handicapped
persons being able to live as much like the rest of society as possible (Kramer, 1974).
Conditions are being created where disabled persons experience the normal respect
entitled any huan being (w01fensberger, Nirge, 1972). Their choices, wishes, desires
and aspirations are considered in order for them to determine direction for their lives.

Advocacy

The right to life, liberty and pursuit of happiness may be self-evident, but has
never been self-enforcing. (Hallgren 6 Norsman, 1977)

The struggle to protect and exercise basic huaan rights is dependent upon the economic
and Innan resources available. Members of the advocacy movement believe in the need to
provide these resources to people with developmental disabilities, establishing systems
to protect and safeguard the rights and interests of the disabled. Advocates are those
persons who intend to represent and. advise regarding the rights, interests, and needs
of people with disabilities (Addison, 1976). Advocates attempt to bring about social
justice for those who have been or represent the potential to be treated unjustly. The
advocates' goal is to provide the kind of involvement tint results in persons becoming
self-advocates. Their focus is on facilitating the learning of self-advocacy skills
for an independent as possible lifestyle (Dybwad, 1980).

Se lf-Advocacy

Self-Advocacy is that component of the advocacy movement which is directed toward
increasing the knowledge and understanding of basic hunan/civil rights and responsi-
bilities and is a pare-condition to meaningful citizenship. . . . Self-Advocacy is
defined as advocacy by an individual whose rights, interests or needs are at risk
of being didnished, in order to represent his/her own rights and interests and
speak on his/her own behalf. (Hallgren S Norsman, 1977)

Asserting one's personal rights involves expressing thoughts, feelings and beliefs
in direct, honest and appropriate ways which do not violate another person's rights
(Jakubowski, 1976). Assertive behavior by persons seeking their rights are the inter-
personal skills of the self-advocate. Appropriate assertiveness is learned, and requires
a relevant social context. Individuals can become socialized by being able to communi-
cate and protect their self-interest. Socialization increases the potential to relate
with others in society, as well as developing self-respect and identity (Heath, 1977).

Self-Advocacy Support Groups

Individuals may need the support and encomgement of others to be self-advocates.
Support groups provide additional power and resources to the individual. The grow is
meful in maintaining continuity of affective outcomes including increased motivation,
self-respect, and self-acceptance. The development of cognitive skills (problem solving,
memory, retention), organizational abilities, and leadership are also increased (Heath,
1977). .

2

The development of effective citizenship is brought about through the interaction
of people facing concrete, real life problems with each other at a site location that
has meaning and is easily accessable. The identification self-advocates have with the
site provides a context for participation in real life problems (Curtis, 1974). The
issues the support group deal with are relevant to their lives and stem from the
dynamics of the site. The involvement by persons in their own programs and sites
increases their skills as selfzadvocates through participatory democracy. The sense
of efficacy, competence, and personal power is developed and strengthened as self-
advocates participate in meetings and on committees, defining the group's purpose and
goals, choosing leaders, planning activities, and providing one-an-other emotional
support. The organization of the mentally retarded into support groups and coalitions
is a way to self-representation and self-advocacy. They can exercise their rights as
citizens, and gain direct access to needed services (Menolascino, 1976).

Advisors to Selthdvocacy Support Groups

The advisor has an important role in assisting in the formation and organization of
a self-advocacy support group. Peeple desiring to become self-advocates often do not
have the knowledge and skill needed to facilitate the group process. The advisor is a
member of the group with similar rights and obligations, and serves as a.model for
others to observe and learn from in developing a supportive atmosphere. An advisor
may make suggestions to assist in moving the group process along, to clarify communi-
cation, to insert structure, to teach group members to be self-advocates and to be
sensitive to the needs and direction of the group and its members.

The Need for Advisor Training

The challenges encountered as a result of discovering what is necessary to do as
an advisor is rewarding, and painful. In many programs around the country there are
peeple, who in responding to the needs of the disabled, have chosen to facilitate the
development of self-advocacy support groups; sometimes feeling alone, without a clear
direction. Heath (1978) discusses the time spent on defining the role of the advisor.
This is a way to determine responsibility and purpose, but requires the ability to
withstand ambiguity. The specialized talents of those who can respond in such a way
while involved in creating support groups must be lauded. They have broken through
a frontier in the field of mental retardation.

The idea of self-advocacy is being disseminated, with many persons desiring to
become involved. Same, with their "hearts in the right places," do not know where or
how to proceed. They may need to be able to "tap" on the collective experience of
those who have gone before them, and learn from the trials and tribulations of others.

There are few materials presently available to assist in the training and develop-
ment of advisors to self-advocacy support groups. Information, ideas, techniques and
skills must be shared between and among advisors, and passed on to others seeking this
knowledge. Instructional programs are needed to enable people to become advisors thus
increasing the amber of developmentally disabled and mentally retarded persons becoming
selihadvocates.

153

BIBLIOGRAPHY

Addison, Max R. Special Report, Advocates on Advocacy: Defining Three
Approaches, Citizen Advocacy.

Dybwad, Gunner. "The Community Responsibility for Mentally Disabled Individuals."
Community Mental Health Board, Hilton Inn, Lansing, Michigan, May 9, 1980.

Hallgren, Betty 6 Annette Norsman. Life, Liberty and the Pursuit of Happiness:
A Self-Advocacy Curriculua. Wisconsin Coalition for Advocacy, 1977.

Heath, Dennis L., Advisor. People First: DeveIOps Group Identipy, Independence.
Polestar, 1978.

Heath, Dennis and Others. People First: Evolution Toward Self-Advocagy;
Deficiency Mental/Mental Retardation. V28, N2, AP, 1976.

Jakubowski, Patricia 8 Arthur J. Lange. Responsible Assertive Behavior Cogitive/
Behavioral Procedures for Trainers. Research Press, 1976.

Kiley, Michael. Commity Mental Health Board, State Police Training Center,
Workshop, Lansing, Michigan, February 6, 1981.

Kramer, Beth. Silent Minorit . Presidents Committee on Mental Retardation.
Washington, D.C.: Department of Health, Education and Welfare, 1974.

Menolascino, Frank. "The Future of the Handicqaped Person and His Comunity."
Pqer presented at the World Congress on Future Special Education, 1978.

Wolfensberger, Wolf; Nirge, B.; Olshansky, 5.; Perske, R.; 5 Ross, P. _The;
Principles of Normalization in Human Services. Toronto: National Institute
on Mental Retardation, 1977.

154

"What would be useful in a training program.for advisors of self-advocacy
mammn:gnnmsd'

Dear Mr . Rowlson,

I'm happy to have the opportunity to reflect for you on the one
activity that finally gives a long life as a teacher its ultimate
meaning and purpose; is. helping developmentally disabled people learn
how to speak for themselves.

Your question above was not easy at first to answer, for a num-
ber of unrelated reasons. First because I arrived at the role of
advisor by my own life-long route (53 years), and because I have
found it necessary to develop my own basic rules for the role, since
I hadn't learned that there were many others travelling parallel
paths and pursuing identical ideals out there sanewhere. Another
reason your question was difficult to answer was because I suspect
that this kind of role might still be unique enough to need a hybrid
individual to fill it; rather than someone, for example, who_is be-
ginning a career in social work and still has an array of options to
choose from, I think it requires someone who has already chosen a wide
range of commitments and who now finds this work almost as a calling
or as a mission. In.other words, I don't think you can train a good
advisor for a self-advocacy group. I believe you have to find the
person already formed.

I believe that is important, at this stage of the development of
the art of advising in this area, because the very act of urging a
develOpmentally disabled person to do something which the social sys-
tem has, for so many years,‘Ile done for them, inevitably brings on
both the d.d person and the advisor some very powerful responses from
service providers within that same social system. Very often, the
more confident and eloquent and effective the disabled person become;‘
the more he and the advisor and the group are opposed and obstructed."
To carry on in such an environment, both for the group and for the
advisor, there needs to be more than just anger, or wild shouting and
striking out. What is needed is a calm determination to press on in
positive, legitimate ways based on fundamental rights and a courage
to be able to take a beating along the way.

Now, while I could illustrate those convictions with many exper-
iences I've had as a teacher and a self-propelled advocate who "had
his heart in the right place", perhaps I should summarize an answer
more directly related to your question.

At this point, I think there are two things that are most useful
if someone would be trained to be a good advisor to a self-advocacy
group. 1) The advisor or the group should not work or function offi-
cially under the aegis of a service agency, or in.many cases even under
the umbrella of another advocacy organization. Our experience in Colo-
rado has been disastoruus in trying to form a State group within the
State A.R.C. We have also received strong opposition from the Community
Centered Board in Boulder which provides services for many of our local

155

page 2

members. In fact, our Boulder County ARC is heavily infiltrated and
controlled by the two main administrators of services in the comunity,
so that both the ARC and the Citizen Advocacy programs are no support
to the self-advocate group what-so-ever. That is in spite of the fact
that I, the advisor, have been active with the ARC on both the count .
and the state level for many years. I've been advocating more and fan I' ¢
more vocally and effectively for more visibility and participation/in W
all activities inside and outside of the ARC. As a result I have been/ ’
progressively ostracized. It has only been a long life of involve-
m ent in educational, labor union and political advocacy that has made
it possible to continue to work with our group without being crushed
myself. Infect, our State People First group seems to flourish in
spite of all the opposition. Independence is essential!

2) An advisor must be highly creative, tuned in to the human
nuances of the personalities of disabled people (able to recognize
that most of them are identical with so-called normal people), have a
charisma for disabled people (is. see that one's self is disabled
too so that it is easier to identify with the disabled group) and
be able to learn how-to relpte all experiences which challenge a
disabled persotho the everyday world of so-called normal people.
The advisor has to know that everyday world fairly well and feel
comfortable with most of it, though not necessarily accepting of
what is not acceptable.

But let me quickly aphasize this. Since I am a teacher of
children and developmentally disabled children and adults, and
only by accident and by role modelling am I an educator of my peers,
most of what I have said above comes fran my own subjective life,
experiences and point of view. It is a basic assunption of mine now
that most important roles which require human interaction require
also a particular type of person. What is needed is to find that
very person, cpen the door to the challenges of the role and let
personal creative ability and self-propulsion carry on from there.
That's a very subjective training program, probably one that is dif-

ficult to fund at a uni ersity special education department. But
that is how I see “W'

New, on a personal level. I suspect, and would be very pleased
to know, that you first heard about our People First of Colorado and
our sel f-owned magazine, The C.U. Citizen, from two frierrls of ours
Jan Black and Alice Roeloffs, who are now directing a fine program
in Detroit and who had started the College for Living program at Metro-
politan State College in Denver. If that is true, give them our great-
ings. We love them dearly. If you heard of us from sane other route,
then, I hOpe you eventually get to know Jan and Alice. They are worth
the eXperience.

S incerely ,
\

4 ““464‘7 Paul Davinroy

673‘“,va ’f/

1556

2

The development of effective citizenship is brought about through the interaction
of people facing concrete, real life problems with each other at a site location that
has meaning and is easily accessable. The identification self-advocates have with the
site provides a context fer participation in real life problems (Curtis, 1974). The
issues the support group deal with are relevant to their lives and stem from the
dynamics of the site. The involvement by persons in their own programs and sites
increases their skills as self-advocates through participatory democracy. The sense
of efficacy, competence, and personal power is developed and strengthened as self-
advocates participate in meetings and on committees, defining the group's purpose and
goals, choosing leaders, planning activities, and providing one-an-other emotional
support. The organization of the mentally retarded into support groups and coalitions
is a way to self-representation and self-advocacy. They can exercise their rights as
citizens, and gain direct access to needed services (Menolascino, I976).

Advisors to Self-Advocacy Support Grows

The advisor has an important role in assisting in the formation and organization of
a self-advocacy support group. PeOple desiring to become self-advocates often do not
have the knowledge and skill needed to facilitate the group process. The advisor is a
member of the group with similar rights and obligations, and serves as a model for
others to observe and learn from in developing a supportive atmosphere. An advisor
may make suggestions to assist in moving the group process along, to clarify communi-
cation, to insert structure, to teach group members to be self-advocates and to be
sensitive to the needs and direction of the group and its members.

The Need for Advisor Training

The challenges encountered as a result of discovering what is necessary to do as
an advisor is rewarding, and painful. In many programs around the country there are
people, who in responding to the needs of the disabled, have chosen to facilitate the
development of self-advocacy support groups; sometimes feeling alone, without a clear
direction. Heath (1978) discusses the time spent on defining the role of the advisor.
This is a way to determine responsibility and purpose, but requires the ability to
withstand ambiguity. The specialized talents of those who can respond in such a way
while involved in creating support groups must be lauded. They have broken through
a frontier in the field of mental retardation.

The idea of self-advocacy is being disseminated, with many persons desiring to
become involved. Some, with their "hearts in the right places," do not know where or
how to proceed. They may need to be able to "tap" on the collective experience of
those who have gone before them, and learn from the trials and tribulations of others.

There are few materials presently available to assist in the training and develop-
ment of advisors to self-advocacy support groups. Information, ideas, techniques and
skills must be shared between and among advisors, and passed on to others seeking this
knowledge. Instructional programs are needed to enable people to become advisors thus
increasing the number of developmentally disabled and mentally retarded persons becoming
self-advocates.

157

cmzew make!
905 .9”. Ave. Boa 515

. . 1
Sadney. N’ 59 62 in a training program for advisors of self-advocacy

1J58

J ewish
U ocationafi
$3 ervice

1339 North Milwaukee Street - Milwaukee. Wisconsin 53202 - (414) 272-13.. '

 

 

 

 

Michael M. Galazan, Executive Director

3/12/81
Dear Mr. Rowlson:

Interestingly enough, your request for ideas with regard
to needs of self-advocate advisors comes at a time when I
am also reaching out for help and exploring possibilities.

In 1976. I began a club for my clients who were/are living
independently in apartments and working in outside employment
throughout Milwaukee county. In visiting these clients in
their homes, I found a trend of isolation, skill and emotional
deterioration. In order to correct this debilitating situation
I formed the organization l776'ers based on a 4-H Club program,
incorporating educational and recreational components.

In 1978. I was approached by Annette Horsman of ABC to in-
corporate the approximately 70 members of the organization
in-a pilot project of self-advocacy skill building. Because
of individual disinterest, etc, only about 8 of the member-
ship has attained specific self-advocany/assertiveness to date.

A major problem in getting people through the program is
motivation of the individual through natural parents, house
parents, foster parents, workshop/rehabilitation staff etc.

The other monumental problem comes after the individual attains
the skills in self-advocacy and begins to implement his know-
ledge within the rehab. setting and/or community.

The first tame one of the individuals tried to assertively
mediate a wage dispute at a sheltered workshop. he was sus-
pended. Examples are too numerous to describe.

The problem as I have experienced it, is one of community education
and education within the social service fields which supposedly
service the developmentally disabled population. Wide spread
dissemination of available materials to rehab. agencies would (con't)

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159

Pagee 2

be a step in the right direction. ‘We as a group of rehab.
counselors at the Jewish Vocational Service in Milwaukee,
would welcome lists of speakers for inservice training, ex-
panded bibliographies on the subject and audio-visual aids
for inservice.

Please note I am.the advisor for the 1776'ers group. Bill
Lucht is the president of the organization. I can be reached
at the above number.

Sincerely,

l ., -
,1. ’/ I'll

A

. r' "1 f i. l'. . ./ s/I‘;
' {1.4; C A "3‘ .34."

 

”Pam Holzscbuh'
Advisor-l776'ers

160

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161

  

Association for Retarded Citizens of Greater Lowell Inc.

145 Lexington Avenue
Lowell, Massachusetts 01854
Telephone No. 6174596179 - 459-0122

Match 13, 1981

John S. Rowlson
618 Forest . .
East Lansing, Michigan 48823

Dean John,

I'm sonny I couidn't tahe mane time giving you some ideas on
tnaining 05 advisons. You caught me at a acuity busy time. I
enctosed a Menay Mac pamphtet and a shont histony 06 the gnoup.
As thein Advison, I'm nesponsibie 604 thein P.R. (I aiso iihe
to bnag about them.)

John, when I nead things Like "Tnaining and Development as
Advisons” I immediatety become anxious. My seats ane somewhat
neaListic. £5 advisons ane taained on "pno‘essionatized" we'ne
instituting a new pnofiession that might eventuaiiy thy to "con-
tact" aathen than suppont aetanded citizens.

I am welt awane 06 the newands, the gnustnations and the pain
a new advison must expenience when onganizing a sets—advocacy
gnoup. I woutdn't have missed it 504 the woatd! The aesuits
05 that expeaience taught me that I wasn't as democnatic as
most 06 the membens, that I wasn't as sensitive as most 06 the
membens and that I didn't give the membens enough cnedit 60a
the good judgement they possessed. That expenience made me
mane a pant 06 thein hopes, dneams and the gutune 05 thein
club. The Menay Macs ate my sniends and co-wonhens an

Officer: and Directors for the President: ls: Vice President: 2nd Vice President: Treasurer:
Year I980- I981 Mr. Vincent Mulligan Ms. Karen Lenore Mrs. Diann Hamblett Atty. Benjamin Sandler

Secretory: Executlve Director:
Mrs. Aurise Declare Mrs. Virginia M. Huard

Mrs. leanne Kunze Ms. Yvonne La-Garde Ms. Denise Beaulleu Mr. Carl Russo

Mrs. Claire Dultesne Ms. Carol Pulsford Mr. Ernest Vaillancourt Ms. Bonni-lean Asbiornson

Mrs. Rita Conlon Letendre Mr. Daniel Shea . Ms. Kathleen Lamond Ms. ltrAnn Quigley

Mrs. Evelyn Gianacoplis Mr. James Doyle Ms. Judith Gallagher

Mrs. Elizabeth Walsh Mr. Daniel O'Neil Mr. Henry Sarault

Ms. Alice Monahan Mrs. Alice Rondeau Mr. David Hunt

 

MEMBER OF:

J Merrimack Valley United Fund
{“7 5 Massachusetts Association for Retarded Citizens

National Association for Retarded Citizens

162

pian to be with them 60a many yeaas.

Wett John, I'tt get 066 my soap box now and hope the meagea
infionmation I gave you witt hetp you in some way.

Sincenety, /fi
K o/ ‘fl”
Mtg/{x JW

Kathy Tessitone
Advis on: Men/Ly Macs

163

"What would be useful in a training program for advisors of self-advocacy
support groups . "

10.

II.

Knowiedge 05 tetaadation.
Sensitivity to stow speahets, petsons with speech impediments.
A icng tenm commitment to consistency and continuity.

A ciean exptanation that an Advison is a finiend and a aesoatce
petscn, not a sta5$ penson on a boss.

A ginm beiiefi in the nights 06 disabied peasons and a deep
nespect and undenstanding 05 each memben's potentiat.

An abiiity to sit back and Let membehs wonh things out son
themsetves.

Have eveay decision voted on, neven make a decision flat the
gnoup.

The advison neven imposes tutes such as who can join, how
many peasons can join, on infituence membeas to be selective.

The advison captains the impontance 05 being on Local
advisoay boand committees and encouaages membens to be
active in theih community.

The advison shoutd Let the membeds know that they have the
night to ash the advison not to panticipate in the meeting
on not to attend a meeting. It should be made cieaa to the
membens that it is theia ciub and not an extension 05 a
"pnogaam."

The advisoa should keep a necond 06 names and addaesses 05
aii membehs so inéonmation, pubtic aeiations, notices,
etc., can easity be disseminated.

. ' 164

MERRY MACS

fl_Yean Old Febauany 20, I9sh.
Had Mohawhs and Souaws {on guest speahens.

Menbens suggested letten be unitten to institution neganding
discninination against netanded pensons senving as vo unteens.

Sin menbens attended anti-discninination congenence sponsoned
by anothen selfi- advocacy gnoup.

Membens gave input to Socio- -Ed pnogaan neganding evening counses
they would like to take. Also made suggestions (on sumnen
aecneation pnognams.

Discussed guandianship and what it means.

Membens sent lettea to state senaton/chainpenson Senate Ways
and Means Committee expaessing thein concetn oven the Mental
Health budget and its efiflect on thein lives.

Henbens attended "Yes we Can” concenence planned by develop-
mentally disabled pensons. A Kenny Mac nenben (Alice) was on
planning committee.

Sane membens have discussed violations o5 thein nights with
community nesidence sta“ pensons.

Membens plan thein social activities. Fon example, Chaistmas
panty, Annivensany panty, etc.

Membens ‘onmed Political Committee which will gathea in‘onmation
‘ concenning pnesidential candidates.

Club held a watch negistnation tnaining meeting. Membens
pnacticed using voting machine and ballot box. City Election
e

Commission mem ns attended and a nepaesentative gnom the League
06 women votens.

Club had guest speahen about pnopen sexual behavion in public.
Slide show was seen and discussed. Fee was paid out as tneasuny.

1166

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168

iAsseeiation for Retarded
Citizens, Iacie Con

fl \ clontoru Orgonvzotlon Dedicated to (’he UJelI‘ore or Mentally Retarded Peoom: or’ fill HUG s

8672 Bird Rood. Suite 2) ). Miami, Florida 33155

W! Film
Honorary Chairman
LINE! 3. MAI.
Executive Director
m

In. Find

mun-n

In Ila-e! Carlee-a

II VIC H.-

M M. J!
heat I “E I.”

sue—s can
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teens-.8-

use

 

Phone:5534002

March ll. 1981

John S. Rowlson

618 Forest

East Lansing, Michigan
48823

Dear JOhn,

I received your letter regarding your disserta-
tion project to develop materials to assist advisors
of self-advocacy groups. This is very much needed.
During the past two years. I have served as the ad-
visor to People First of Dane County. and I now serve
as the Project Director for a Developmental Disabili-
ties Grant in which we are assisting consumers and
advisors in starting nine self-advocacy groups
throughout florica. We have developed some training
materials and resource manuals for use by consumers
and professionals. Jeff Woodyard's , Advisor Guidebook

For Self-Advoca , is also very helpful. If you want

these materials, please let me know and I'll send them
to you.

The following are some topics that I think you
may want to include:

1) Basic overview of developmental disabilities
. and laws.
2) Group process and development-generic and
. application to self-advocacy groups.
3) understanding government - how to influence
. legislation.
4) Obtaining resources - funding, training,volun—
. tears.
5) Maintaining the balance between doing too much
and too little for the group.
6) How to be an advisor if you work for an agency
providing services and keep your job.
7) Resolving transportation problems.
8) Working with other advocates
9) Goal planning and follow-up with the
. group.
AUmodeyw

Member of Florida Fissoelonon for Rammed Citizens and Notional association for Retarded Citizens

169

Good luCR on YOur project. Please let me know if
I can be of further assistance.

Sincerely.

Nina then

Self Advocacy
Project Director

NC: 131:

1370

(Mg/Mr"

"E

il in a training program for advisors of self-advocacy

0.

“V: o

In my opinion, in order to be a successful advisor one should first
understand the population one will be working with. People are products of
their environment, therefore. one needs to explore the community the folks
live in, their family situation, residential setting. work environment and

. social situation. Much of this can be done in an interview with the individuals
on a 1-1 basis. Once you have acquired the basic information you can pull
together a group. -

In order to have a successful group you have to set up guidlines and a
structured environment in which the issues of self— advocacy can be highlighted
and addressed. Above all you must be consistent in your approach. The
structure will help avoid confusion and is helpful in insuring that no one is
left out of discussion and they have a frame work to comply with limiting
inappropriate behaviors. such as speaking out of turn, and tangents etc.

It is also important that advisors are well informed as to events that
will directly or indirectly effect the group as a whole or as individuals.

Keep up with past and currant legislation, and community affairs. You might
also want to go out to existing self-advocacy groups and note how they approach
ssues.

Above all one must be committed to the concept of self-advocacy and be
willing to put in a lot of man hours. availability to your population is a
key to success. as an advisor one must be open to the needs of the folks
before, during, and after the meeting, it is an ongoing responsibility. if
one is not sure how much time they want to devote to a group they should put
off organizing until they are able to clarify in their own minds how
important being an advisor to a self-advocacy group is.

Thats about it in a “nut-shell”. If I can be of further service to you

please feel free to contact me.

Sincerely,

I
Cage:Z:;5Zk.

Minute Man Recreation Coordinator

171

 

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APPENDIX D

Module Package

MODULE I

INTRODUCTION AND ORIENTATION TO

THE SELF-ADVOCACY MOVEMENT

GOALS:

 

To increase application of knowledge about self-advocacy.
To increase sensitivity and acceptance of self-advocates.
To develop environments that foster self-advocacy groups.

.RAIIONALE:

This module is intended to inform you about self-advocacy groups that
are being formed around the country. These groups are being formed in
this community and one may be starting at the site where you work. You
will learn what can be done to assist in creating conditions that allow
self-advocacy groups to evolve.

Your involvement with people from other programs in a cooperative and
creative environment will increase resources for you and others. The
diversity of ideas and options for self-advocacy groups will become
apparent as you learn the conditions that exist in the many sites rep-
resented. The blending of resources and ideas can strengthen your
program.

Your knowledge and understanding of the issues of advocacy and self-
advocacy will be explored and shared. In this process you will realize
the relationship advocacy has to self-advocacy, and clarify your role
as an advocate.

The need for self-determination by the disabled will be discussed.
You will learn how self-advocacy groups satisfy many personal and
social needs. The benefits an individual can achieve by making choices
can lead to greater independence and integration in a democratic society.

176

 

177

OBJECTIVES:

 

To increase application of knowledge about self-advocacy.

A. Given the definition of advocacy, you will identify and
record those times you acted as an advocate, continue for
one week or until you have ten examples, analyze the data
and set yourself an advocacy objective.

To increase sensitivity and acceptance of self-advocates.

A. Given an introduction to self-advocacy, you will share
perceptions and experiences about beliefs you hold related
to the satisfaction of disabled persons needs.

B. Given an introduction to self-advocacy, you will identify
and discuss self-advocacy issues observed at various sites
in this community.

To develop environments that foster self-advocacy groups.

A. After the first session, you will discuss with the people
you work with the ideas involved in starting self-advocacy
groups in this community and at your site.

ACTIVITIES:

 

I.

II.

III.

IV.

VI.

VII.

Participate in name card exercise.
Participate in identifying issues of Self-Advocates exercise.

Record for one week those instances you have acted as an advocate.
Look for patterns, omissions, or insights which you can use to
increase the times you are an advocate. Write yourself an advocacy
objective.

Discuss the ideas in the People First article with another person
from your site. Note how some of these ideas may be implemented
in your program.

During free time observe the people you serve. Be aware of cul-
tural differences and similarities. Determine who the group
likes, respects, the leaders, followers, outsiders. Note norms
that may be similar to and different than agency norms.

The addition of a self-advocacy group will effect the ecological
balance of your program. Brainstorm with your staff what the
effects might be and develop a plan to reduce the negative effects
and increase the positive aspects of a self-advocacy group.

Use a Journal to record observations, activities, projects, and
your progress made during this training. The journals will be
collected at the end of the training to be used to analyze the
effectiveness of the instructional materials. They will be re-
turned to you one month after training has been completed, during
a follow-up interview.

 

178

ACTIVITY

TITLE: Name Card Exercise
GOALS:

To state position during inservice.
To be an impetus for interaction.
To clarify values about self in relation to the disabled.

MATERIALS:

1. One 4" x 8" card.
2. One safety pin.

STEP-BY-STEP PLAN:

1 On a 4" x 8" card write name in upper right hand corner.

2. Write work site under name.

3. Choose the appropriate title for your role in this inservice and
place in upper left hand corner;

a) interested staff,

b) administrator,

c) prospective advisor,

d) advocate,

e) other (fill in own term).

4. 0n back of card, write one expectation you have for this inservice.

5. Also on back of card, write a need the disabled have that you
believe is being adequately addressed at your site.

6 Follow this by an inadequately met need.

7. Pin card on name side out.

8 The facilitator will direct the following activity:

 

a) silently mill around and identify a person who you do
not know and pair up,
b) identify speaker and listener, you will switch roles,
c) share in one minute your role in this inservice and
why you are here,
d) share one of the two answers to the questions on the
back of the card. Be aware of your criteria for selection,
e) revise roles and repeat.

9. Processing:

.a) assess level of comfort and depth of responses,
b) determine various criteria used in sharing.

179

ACTIVITY

TITLE: Identifying Issues of Self-Advocates (exercise)

GOALS:

 

To become acquainted with others.

To reflect upon your clients and their needs.

To gain an understanding of what others perceive and value.
To increase your awareness of self-advocacy.

MATERIALS:

Paper and pencil.

STEP-BY-STEP PLAN:

1.
2.

3.

O‘U'Ib

Form group of four to six people.

One person at a time share an example of a client seeking to be

a self-advocate.

Briefly discuss each example to be certain each person is sharing
an issue if needed.

a) clarify definitions,
b) explore perceptions,
c) piggy-back experiences.

Expand example and make generalizations about Self-Advocates.
Record.
Process in large group:

a) sharing examples,
b) clarifying perceptions,
c) check out feelings.

Facilitator collects examples.

 

 

180

MODULE I

IMPACT QUESTIONNAIRE

This questionnaire seeks to determine the impact this module has had
upon your growth along the dimensions of: knowledge, skills and
attitudes/beliefs.

l. Differenciate between advocacy and self-advocacy.

2. Briefly explain self-determination.

3. What was your reaction to the People First article?

4. What do you feel about a national self-advocacy movement?

181

MODULE I

EVALUATION

The purpose of this evaluation is to determine your reactions to the

instructional materials along the dimensions of:

structure, and presentation.

1.

The presentation of the material was:

content , format ,

 

 

 

exciting interesting O.K. dull boring
/ / / j /

Comment:

The discussion on self-determination was:

very not a waste

useful useful O.K. useful of time
/ j j j /

Comment:

The Activities were:

rewarding interesting O.K. dull unfulfilling
/ j 1 l /

Comment:

What did you find most useful during this session?

What did you find least useful?

What would you leave the same?

What would you change in this module.

 

 

 

132

MODULE II

 

ASSESSMENT:
1. Give an example of how you respected a mentally retarded persons
dignity of risk.
2. Why do you want to be an advisor to a self-advocacy group?
P
3. What is a strength that you have that will assist you in facilitating .
a self-advocacy group?
4. Do you feel competent to facilitate a self-advocacy group?

 

 

183

MODULE II

THE ROLE OF ADVISOR TO SELF-ADVOCACY GROUPS

GOALS:

To increase knowledge and application of principles of self-advocacy
advising.

To identify and define advisor skills.

To develop alternative methods for determining the role of advisor.

RATIONALE:

The purpose of this module is to provide a philosophical base of beliefs
that define the role of advisor. Knowing the proper function of advisor
to self-advocates will assist in maintaining clarity and purpose.

The conditions of the mentally retarded lives must be appreciated. Many
have been treated as dependent and incapable, with many of their needs
being taken care of by others. The transition from dependency to in-
creased independence requires changes in how the disabled and advisors
perceive help. Often old patterns of interacting and ways of maintaining
a dependency position is reinforced by both parties. It is difficult for
an advisor and the self-advocate to move from a superior to subordinate
interaction pattern; from.being dominating and dominated; from the helper
and the helpless; to seeing each other as resources; to establishing
equality of influence; to cooperation and mutual respect; to being able
to know when to "back off" and observe people work problems out for
themselves.

You will be given the opportunity to discuss, clarify, and practice
various roles of advisors. You will then be more skilled and knowledge-
able and in a better position to advise.

The skill of being able to discriminate your needs from the self-advocate
will be strengthened as you participate in the discussions and activities.
This skill is important in keeping your role as advisor in perspective
and modeling integrity with the group.

You will be introduced to the skills advisors need to facilitate self—
advocacy groups. You will learn to identify and when these skills are
exhibited; this will allow you to put theory into practice and begin
to integrate principles with your skills.

184_

MODULE II

OBJECTIVES:

Principles.

A.

Given four basic principles of self-advocacy, you will
develop and implement a written plan that will heighten
your comprehension and sensitivity of each principle.

The results of this plan will be turned in at the completion
of the training.

Given the opportunity to role play a self-advocacy group
defining the role of the advisor, you will participate in
various roles focusing on application of the principles

of self-advocacy.

To identify and define advisor skills.

A.

After completion of each role play situation, you will fill
out an advisor skill assessment sheet checklist and provide
each person with constructive feedback.

After receiving feedback from the group, you will identify
those advisor skills that are your strengths and those that
may be limitations.

To develop methods for determining the role of the advisor.

A.

During discussions about various self-advocacy groups, you
will describe the conditions that exist at the site where
you will be an advisor and problem.solve with the group
various ways you may be able to determine your role as an
advisor.

ACTIVITIES:

I. Participate in discussion on Basic Principles of Advising Self-
Advocates.

Materials: a) "The DD Bill of Rights"

b) Self Advocacy: "What does it mean"
c) Guidelines for Advisors

II. Participate in discussion and explanation of Advisor Skill
Assessment Check-list.

III. Participate in Self-Advocacy Group role play.

 

 

 

135

ACTIVITY

TITLE: Self-Advocacy Group Role Play

GOALS:

 

To practice applying the principles of self-advocacy.

To increase awareness and understanding of advisor skills.
To give and receive feedback.

MATERIALS:

1. Role descriptors of self-advocates.
2. Skill assessment sheet.

GROUPS: Four to six people in a group.

STEP-BY-STEP PLAN:

 

1. Request a volunteer to be the advisor, informing the group that
each person will have an opportunity to have both roles of
advisor and self-advocate.

2. Have participants draw a role descriptor from hat.

3. Read descriptor but do not share with others.

4. A self-advocate announces an issue to be discussed.

5. After everyone has an idea of their role, announce that the role
play will last five minutes with processing, and then we will
switch roles.

6. Begin role play for five minutes.

7. Stop - process at seven minutes.

8. Fill out assessment sheet.

9. Repeat exercise until all participants have had an opportunity

to be an advisor.

186

MODULE II

EVALUATION

The presentation of the material was:

 

 

excellent O.K. very poor
/ / / / /
/ / / / /
clear confusing
Comments:

The discussion on the Principles of Self-Advocacy was:

 

excellent good O.K. poor very poor
/ / / / /
Comments:

The role play activity was:

 

helpful O.K. harmful
/ / /
Comments:

What did you find most useful about this session? Why?

What was least helpful?

What suggestions or recommendations do you have?

187

MODULE III

ASSESSMENT:

 

1.

List three commonly held myths about the developmentally disabled
and mentally retarded.

write an example from.your own experience where a disabled person
has expressed their need to be a self-advocate.

Describe how you are perceived by the people you are seeking to
advise.

Have you started working with people as an advisor? Yes No

If yes, do you feel more confident as a result of what you have
learned in this training? Please explain.

If no, do you feel more confident to start as a result of this
training? Please explain.

 

 

188

MODULE III
PARTICIPATING IN THE GROWTH OF

SELF-ADVOCATES

GOALS:

 

To increase knowledge of developmental disabilities.
To develop a perceptual view of self-advocates.

To increase knowledge about self-advocacy skills.

To facilitate problem solving and decision making.

RATIONALE:

The purpose of this module is to link knowledge of developmental dis-
abilities with an understanding of what a person must do to be a
self-advocate. People often limit their perceptions of the persons
potentials by stigmatizing and stereotyping through the assumptions
held to be "true". There are many myths about retardation,
WOlfsenburger speaks clearly about seven myths commonly held which
result in devaluing the person. You will be provided information
that can assist you in distinguishing fact from.myth. In this process
you will recognize opportunities to go beyond your own preconceptions
about human potentials and appreciate the striving for dignity and
equality motivating self-advocates.

Person's beginning their journey as self-advocates may not know how

to communicate their needs. They may be tentative in attempting to
pursue their emerging awareness. Your task is to gain the ability

to hear their subtle expressions, and respond in ways fostering growth
in self-reliance, self-confidence, assertiveness, reality orientation,
problem solving, and decision making.

The self-advocate must make their own decisions and act on them.
This requires judgement and motivation. Facilitating this process
is a function of the advisor. You will practice posing questions,
options and alternatives so that people can make decisions.

You will role play a person you know becoming a self-advocate. This
will sensitize you to their thoughts, feelings and allow you to gain
an appreciation of their inner world. The responses of others to
your role play will provide you with different ways to intervene.

 

 

189

MODULE III

OBJECTIVES:

 

To increase knowledge of developmentally disabled.
A. Given the opportunity to explore myths about mental retardation,
you will choose a method that will allow you to respond in a
non-stigmatizing manner.

To develop a perceptual view of self-advocates.

A. Given the opportunity to role play a self-advocate you know
well, you will discuss with the group the insights, thoughts,
feelings and perceptions you have about the person role
played.

B. After the role play, you will provide feedback to other advisors
about their interventions.

To increase knowledge about self-advocacy skills.

A. During a discussion on self-advocacy skills, you will develop
a list of skills needed by the self-advocate you are familiar
with.

B. As an observer recorder during the role play, you will make
notes of times when the self-advocates used an advocacy skill.

C. Given the opportunity to discuss, practice and observe self-
advocacy skills, you will record those instances within one
week when you observed a disabled person exercising a self-
advocacy skill.

To facilitate problem solving and decision making.
A. Given the opportunity to role play, you will practice using
questions, options and alternatives.
B. After the role play, you will receive feedback about the
impact your interventions had on others.

ACTIVITIES:

I. Participate in discussion Developmental Disabilities and Mental
Retardation.

II. Read Handouts:
a) Mental Retardation
b) Myths of Mental Retardation

c) Dignity of Risk
d) Self-Advocacy and Changing Attitudes

III. Participate in discussion on self-advocacy.

190

ACTIVITIES: (cont'd.)

IV. Develop a list of self-advocacy skills.
V. Participate in discussion on facilitating self-advocacy.
VI. Participate in self-advocacy role play exercise.

VII. Record those instances within a one week period where you observe
a disabled person exercising a self-advocacy skill.

 

 

191

MODULE III

ADVISOR SKILL CHECKLIST

 

Name of Advisor

 

Name of Assessor

Advisor Skill Area: Often Occasionally Never Comments

 

Decision Making Skills:

 

Pose Questions

 

Offer Options

 

Develop Alternatives

 

Assist to Discuss Pros
and Cons of various
alternatives

 

Explore Consequences

 

Advisor Focused on:

 

Own Need

 

Own Solution

 

One Idea

 

Many Ideas

 

Self-Advocates Needs
and Ideas

 

 

 

 

 

 

192

ACTIVITY

TITLE: Self-Advocacy Role Play Exercise.

GOALS:

To identify and respond to the needs of people becoming self-advocates.
To become more sensitive to people with disabilities.

To practice posing questions, generating options and alternatives.

ROLES:

 

3 people as: l self-advocate - communicate as a person you know in
their manner who is beginning to be a self—
advocate.

l advisor - facilitate self-advocate in problem solving
situation.
1 observer/recorder: 1. watch and record interaction
2. assist both parties to process
experience
3. keep time

STEP-BY-STEP PLAN:

1. Identify each person and their initial role.

2. Self-advocate presents a problem, situation or a decision they are
seeking the advisor to resolve.

3. Advisor respond to self-advocate.

4. Observer/Recorder maintains time for eight minutes, maintains
silence until time limit has expired.

5. Observer has self-advocate share thoughts, feelings, insights,
and perceptions. Three minutes.

6. Observer has advisor share experience. One minute.

7. Observer and self-advocate provide advisor feedback on inter-
ventions. Five minutes.

8. Advisor shares meaningful feedback.'

9. Change roles and repeat.

193

MODULE III

EVALUATION

The presentation of information was:

 

 

 

 

excellent clear O.K. vague confusing
/ / / / /
Comments:
exciting interesting O.K. dull boring
/ / L / /
Comments:
The practice interventions activity was:
rewarding interesting O.K. vague confusing
/ / / / /
Comments:
My satisfaction with this module is:
great fine O.K. low poor
/ / / / /
Comments:

What did you find most useful in this session?

What did you find least helpful?

I would recommend these changes:

194.

MODULE IV

FACILITATING A SELF-ADVOCACY GROUP

GOALS:

To understand aspects of group dynamics.
To increase knowledge about group problem solving and decision making.
To further develop group facilitation skills.

RATIONALE:

You will learn the assumptions held by many Group Dynamicists, that
provide for the basis for the study and uses of groups. With this
orientation to groups you will explore leadership styles and as a pre—
test to this module learn about your leadership style. You will then
delve into the possible implications this style has upon you and the
groups you may facilitate. This discussion will be conducted with an
awareness of the purpose for self-advocacy (Module I) and the role of
the advisor (Module II). Dissonance theory will be presented as a
tool to assist you to integrate learning.

Groups tend to go through various stages and phases. You will be
presented with a model that may be useful in understanding the inter-
actions and behavior of the group. The knowledge of the stage of
group development will allow you to make interventions appropriate

to the developmental level of the group.

Self-Advocacy groups seek to solve their own problems and make decisions
for themselves. Effective problem solving and decision making involve
learnable skills that you as an advisor will facilitate. You will be
presented material that can assist you to process various steps in a
problem solving situation.

One difficulty many people have is identifying and owning that a problem
exists. The less adequate a person is or believes himself/herself to be,
the risk is greater to accept a problem and to begin to imagine the pos-
sibility to solve the probelm for themselves. You will explore various
techniques and develop skills to change peoples perceptions about the
nature of problems and the individuals capacity to work things out for
themselves.

Many people have difficulty making and following through with decisions.
This malaise can be overcome through practice and environmental supports
that allow people to make decisions and "deal" with their feelings re-
garding their judgment. The group provides a form of insulation from
having to assume "all" the responsibility for decisions, making choices
safer. Another advantage a group has is that more alternatives can be
generated representing various points of view, allowing for more
effective decisions.

195

RATIONALE: (cont'd.)

You will learn steps effective decision makers use. This knowledge
will assist you to intervene in developing the groups capacity to
make effective decisions.

Advisor skill building will be developed through rehearsal of inter-
ventions that evolve through discussions about the content covered
in this module.

196

MODULE IV

OBJECTIVES:

To understand aspects of group dynamics.

A.

Given the test of leadership styles, you will identify your
style and discuss the implications this leadership style

may have on a self-advocacy group.

Given information about group stages of development, you will
practice making interventions appropriate to the level of the
group.

To increase knowledge about group problem solving and decision making.

A.

B.

Given the problem solving approach, you will practice making
responses that facilitate people to change their perceptions.
Given steps effective decision makers use, you will generate
with others optional interventions to develop the groups
capacity to make effective decisions.

To further develop group facilitation skills.

A.

B.

During practice interventions while an observer, you will
provide feedback to the advisor.

After making a practice intervention you will receive feed-
back from others and share with the group the most meaningful
feedback.

ACTIVITIES:

I. Participate in discussion on group dynamics and leadership style.

II. Participate in group problem solving and decision making discussion.

III. Practice making interventions to the group in response to examples
generated through discussion.

IV. Read Handouts:

a) Steps In Decision Making.
b) Authority Cycle In Small Group Development.
c) Stages of Group Development.

197

ACTIVITY

TITLE: Practice Interventions.

GOAL:

 

To practice group facilitation skills.

MATERIALS:

Stages of Group Development.
Steps in Problem Solving.
Steps in Decision Making.

STEP-BY-STEP PLAN:

 

l.
2.
3

b

QNGUI

Presentation and discussion of material.

An example situation will be described that dramatizes a concept.

A person will volunteer to be an advisor, the remainder of the
group will act as self-advocates.

The self-advocate will provide one minute of dialogue (warm-up
and set-the-stage).

The advisor will make an intervention.

The group will provide feedback.

The advisor will respond to most meaningful feedback.

Optional responses will be generated.

*Optional steps used after group becomes efficient with process.
Use steps 1, 2, 6 and 8.

_ a.~' "_‘d'a‘m-I

 

yr

 

198

ASSESSMENT

McGreggor Theory X, Theory Y of Leadership

MODULE IV

IMPACT QUESTIONNAIRE

Label and briefly describe the stages of group development.

Identify the steps in the problem solving approach.

Identify the steps in decision making.

Fill in and explain: I believe my skills as an advisor to
facilitate self-advocacy groups have
during this session. Explain:

 

 

199

MODULE IV

EVALUATION

The presentation of information was:

 

 

 

 

excellent clear O.K. vague confusing
/ / / / /
Comments:
exciting interesting O.K. dull boring
/ / / / /
Comments:
The practice interventions activity was:
rewarding interesting O.K. vague confusing
/ / / / /
Comments:
My satisfaction with this module is:
great fine O.K. low poor
/ / / / /
Comments:

What did you find most useful in this session?

What did you find least helpful?

I would recommend these changes:

 

200

MODULE V

ASSESSMENT:

1. Due to this training my ability to work with disabled people has
increased in these areas:

2. List five assertive beliefs you have.‘

 

d.

e.

3. List two laws that have had an impact on changing the rights of
the developmentally disabled.

a.

b.

 

201.

MODULE V

SEEKING HUMAN RIGHTS THROUGH DEVELOPING RESPONSIBILITY

GOALS:

To review civil and human rights legislation.

To understand how human rights are associated with responsible
assertive behavior.

To increase options for people to be responsible. [A

RATIONALE:

Since 1954 Brown vs. Topica Board of Education the civil/human rights
issue has had a profound impact on American society. In twenty seven
years many of societies disenfranchised groups have obtained previously
denied rights.

 

The developmentally disabled have been ostracized by society as re- ’
flected in social policy. Court decisions and laws have paved the way

for the "silent minority" to gain a voice in the democracy. You will

discuss some of the major laws and court decisions and their implica-

tions to increase your understanding and appreciation of the impact

newly gained rights can have on an individual.

An individual aware of their rights also needs to be able to communicate
effectively so that they do not alienate themselves and stigmatize their
group. A belief in responsible assertive behavior can be developed to
improve communication. Rights without responsibility is license.
Denying people rights is unjust and undemocratic. The concepts are
associated with each other and need to be linked when facilitating a
self-advocacy group. You will clarify and explore assertive beliefs
that are useful in developing responsibility. You will also discuss
fears and concerns associated with devalued people behaving assertively.
Within this process you will strengthen your belief in responsible
assertiveness by the disabled. '

 

The environment that people live, work and play in can limit or expand
options people may have in behaving responsibly. You will brainstorm
various environmental adjustments that could be made that would facili-
tate people being responsible. If you want people to be responsible
for their actions then they must have opportunities to be responsible.
You may need to provide them opportunities.

202

MODULE V

OBJECTIVES:

 

To review civil and human rights legislation.
A. Given a summary of civil and human rights legislation, you
will discuss the implications these laws have had on the
developmentally disabled.

To understand how human rights are associated with responsible
assertive behavior.

A. Given basic beliefs about responsible assertiveness, you will '
discuss and clarify your own beliefs and note in your journal
ways to increase your own assertiveness.

B. After clarifying assertive beliefs, you will discuss fears
and concerns associated with the disabled being assertive.
This discussion will lead to developing strategies that can
be used to overcome those fears and concerns.

 

 

To increase options for people to be responsible.
A. Given the opportunity you will brainstorm options that provide
opportunities for people to be responsible.
ACTIVITIES:
I. Participate in discussion on Laws and Rights.

II. Participate in clarification of assertive beliefs as a way toward
‘ responsibility.

 

III. Participate in discussion to overcoming obstacles due to fears
and concerns about the disabled being assertive.

IV. Participate in brainstorming on ways to expand opportunities for
people to be responsible.

 

V. Read Handouts:

a) Developing An Assertive Belief System.

b) Advocacy Programs for the Disabled.

c) Verbal and Non-Verbal Components of Behavior.

d) Focus: Laws, Civil Rights Acts.

e) Public Law 94-142 and Section 504 - "What They Say About
Rights and Protections."

203

MODULE V

EVALUATION

I found the content of the material:

 

appropriately

simple easy challenging difficult too hard

/ / / / /

1?“

Comments: ,
The discussions were:
exciting useful interesting dull boring

/ / / / /

 

 

Comments:

What did you find most useful in this module?

What did you find least useful?

What changes would you recommend?

 

 

204

MODULE VI

ASSESSMENT:

 

1. Describe your feelings about starting a self-advocacy group.

2. Discuss ways to implement a self-advocacy group.

205

MODULE VI

STARTING AND CONTINUING A SELF-ADVOCACY GROUP

GOALS:

To explore ways to implement self-advocacy groups.
To develop systems that provide for the continued existence of self-
advocacy groups.

RATIONALE:

The need for self-advocacy groups must be expressed by the disabled.
If having a group is the advisors ideas and imposes this "service"
on clients then it will be "treatment" and not self-advocacy. Self-
advocacy is a felt need and the sensitive advisor can listen to the
messages that communicate this need. This assessment of need to be-
come self-advocates can be useful in starting a group or finding a
group for a person.

The various sites where people work, live, and play can provide a
consistent and relevant context for the development of self-advocacy
groups. Each site has its own unique characteristics that effect the
purpose and direction of the groups. In this module you will be
provided a step-by-step guide of "Getting a Self-Advocacy Group
Started". The format for self-advocacy group meetings has become
fairly consistent, with officers being elected and parliamentary
procedures being employed. It must be remembered that each group

is different and they must make their own decisions about the function-
ing of the group.

You will be provided information from people around the country who
have already been involved in self-advocacy. Established groups are
resources for you and your group, and you can review their materials.

A commitment needs to be made to people desiring self-advocacy groups.
This commitment is to insure the continued existence of the structures
and resources provided by the advisors as long as the group needs an
advisor. It is irresponsible to start a group and not provide for

its continued existence. we will plan ways to insure the continued
resources for self-advocacy groups.

 

206

MODULE VI

OBJECTIVES:

 

To explore ways to implement self-advocacy groups.

A. After completing the first five modules, you will develop a
self-advocates assessment guide.

B. In conjunction with other advisors, you will discuss the
characteristics of various sites and the potential for starting
and continuing self-advocacy groups.

C. After completing session six you will have the opportunity
to review resources from other self-advocacy groups.

To develop systems that provide for the continued existence of self-
advocacy groups.
A. Given the opportunity you will develop a list of potential
resources for self-advocacy groups.
B. After developing a resource list, you will develop plans
that insure self-advocacy groups of advisors and other resources.
C. After completing this module, you will assist in the development,
implementation, and continued existence of a self-advocacy group.

ACTIVITIES:

 

I. Participate in the development of "A Self-Advocates Assessment
Guide."

II. Participate in discussion on "Implementing Self-Advocacy Groups."
III. Review these materials:
a) People First Handbook.
b) Life, Liberty and the Pursuit of Happiness: A Self-
Advocacy Curriculum.
c) A guidebook for Self-Advocacy Advisors.

IV. Participate in developing a resource list.

V. Participate in planning a system to insure the continued existence
of self-advocacy groups.

VI. Participate in supplementing and continuing a self-advocacy group.
VII. Read Handouts:

a) Letters From Advisors Describing Their Experiences.
b) "The Role of the Consumer in Planning and Delivering
Services."

c) Doug Biklen cites eleven methods of advocacy techniques.

 

 

 

 

207

MODULE VI

IMPACT QUESTIONNAIRE

Outline a plan to start a self-advocacy group.

List resources that you and self-advocates have available.

What will you look for when assessing the needs of self-advocates.

Write a statement reflecting your belief about the need for self-
advocacy.

208

MODULE VI

EVALUATION

I found the discussion to be:

exciting informative interesting redundant irrelevant

/ / / / /

Comments:

The content for this module was:

 

too easy simple challenging difficult too hard
/ / / / /
Comments:

As of this module my commitment to be an advisor to self-advocacy
groups has:

 

increased stayed

greatly increased the same decreased plummeted
/ / / /

Comments:

What did you find most useful in this module?

What did you find least useful?

What would you change?

What would you leave the same?

APPENDIX E

Site Interest Survey

 

To:
From:

COMMUNITY manna" hum-I BOARD
CLINTON-EATON-INGHAM

MEMO

Supervisors Date: April 22, 1981
John Rowlson

Advisor Training for Self-Advocacy Support Groups

The human and civil rights of the mentally retarded and developmentally
disabled need to be protected. In order for any disinfranchised group to
become independent from paternalistic and stigmatizing stereotypes, in
seeking justice and equality they mt speak for themselves. They must
becosm self-advocates.

The tasks of mentally retarded and developmentally disabled persons
speaking on their own behalf are especially great when considering the
social and historical conditions endured. Their lives are restricted and
controlled with few opportunities for personal expression. Yet we profess
to be a democratic nation that values "freedom and justice for all."
Learning to participate in democracy requires opportunities to practice
democratic decision making, risk taking “self-determination.

Self-advocacy is a felt need and emanates out of the persons desire to
improve their lot in life. This represents a profound and meaningful choice.

The conditions to bring about opportunities for self-advocates to _
develop are being created around the country. Many small groups have formed
and are organizing themselves in an attempt to be heard.

The advisor to people becoming self-advocates is critical. Democracy,
decision making, law, assertiveness and self-determination are learned; and
the astute advisor facilitates this learning, without being controlling.
The advisor assists in arranging the necessary conditions for people to
become self-advocates.

I have prepared instructional materials to train advisors to Self-Advocacy
Support Groups as part of my doctoral dissertation. These materials are being
field tested through training staff and advisors from programs in the tri-county
area.

The training for advisors consists of six two hour sessions, once each
week. The first and last session are for the entire staff from participating
sites. This will assist people in understanding and implementing self-advocacy
groups. Session two through five are for the advisors training and focus on
the roles, skills and knowledge needed to facilitate a self-advocacy group.

(Internal use only)

 

210

-2-

The sessions are designed as instructional modules, with a pre and
post test, to assess and evaluate participant growth. The module design,
content, format and presentation are evaluated after each session. A
followbup interview is planned to determine how the content of the materials
18 applied and to evaluate the overall effectiveness of the training.

Enclosed is the agenda for the trainings and a site interest survey.
Please fill out the survey and return. This will assist me in preparing
for the training.

If you have any questions, please call 694-5098.

People who choose to go thru the training must make a commitment
to attend every session. This will facilitate intergrating theory and
practice during skill building exercises. Each session builds upon the
previous session.

I will be making follow-up phone calls later this week.

 

urns-r

njw

 

 

 

211

TIME: 3:30 to 5:30 LOCATION: Bretton Square Industries
Module I Introduction and Orientation to the Self-Advocacy Movement
Date: Monday, May 4, 1981

Module II The Role of the Advisor to Self-Advocacy Groups
Date: wednesday, May 13, 1981
Module III Participating in the Growth of Self-Advocates
Date: wednesday, May 20, 1981
Module IV Facilitating a Self-Advocacy Group
Date: Wednesday, May 27, 1981
Module V Seeking Human Rights Through Developing Responsibility
Date: Wednesday, June 3, 1981
Module VI Starting and Continuing Self-Advocacy Groups

Date: Wednesday, June 10, 1981

 

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SITE INTEREST SURVEY

Agency Name

 

The purpose of this survey is to identify those

persons who are interested in receiving Self-Advocacy

training for Advisors.

1.

Have participants in your program expressed an interest
in forming self-advocacy support groups?

YES NO

Is there an interest on the part of staff to be
involved with a self-advocacy support group?

YES ' NO
Are there any staff at your program who would like
to receive training as an advisor to a self-advocacy
support group?

YES NO
Please list the names and telephone numbers of all
persons who are willing to participate in the advisor
training program.

A.

 

B.

 

 

 

Do I have your.permission to contact these persons prior
to the training?

YES NO

 

 

 

 

 

APPENDIX F

Pre-Test/Post-Test

 

213

ADVISOR TRAINING

Pre—Test/Post-Test

 

Name

Directions: The purpose of this test is to determine your growth

as an advisor due to the training you are about to receive.
This test will be administered prior to the introduction of
the instructional materials and again after you have completed
the six modules included in these materials. The dimensions
of growth include: Knowledge, Skills, Attitudes/Beliefs.
The results of this test will be treated in a confidential
manner. At the end of the training analysis, you may have
the test returned to you or they will be destroyed.

Please fill out each question to the best of your ability.
You will be allowed 40 minutes to complete 20 questions.

Use your time wisely, and work quickly.

Define Advocacy.

What does Self-Advocacy mean?

Give an example of how you respected a developmentally disabled
persons dignity of risk.

List three commonly held myths about the developmentally disabled.

 

 

 

10.

-2-

Give an example from your own experience where a disabled person
has expressed their need to be a self-advocate. How did you
respond to that need?

Briefly describe the relationship self-advocacy has to normal-
ization.

Identify the steps of decision making.

List three styles of leadership.
1.

2.

3.

List two laws that have had an impact on the rights of the
developmentally disabled.

1.

2.

List five assertive beliefs.
1.

214

 

 

 

11.

12.

13.

14.

15.

16.

17.

 

-3-

List five rights of the disabled.
1.

Explain how human rights are associated with responsible
assertive behavior.

 

 

What would you include in a plan to start a self-advocacy group?

Write a statement reflecting your belief about the need for
self-advocacy.

Describe your feelings of competence to facilitate a self-
advocacy group.

 

What skills do you have that may be necessary for an advisor
of self-advocates?

What is the value of self-determination?

215

18.

19.

20.

 

-4-

List and explain the stages of group development.

Outline the role of the advisor to a self-advocacy group.

Give a rationale for including consumers in the decision
making process.

 

 

 

216

 

APPENDIX G

Follow-Up Interview Format

 

II.

FOLLOW-UP INTERVIEW FORMAT

Purpose of Follow-Up Interview:

To determine the relevance of the training with each trainee.

To elicit from each trainee recommendations for revisions to

module package.

Follow-Up Interview Questions:

A.

B.

C.

What did you find most important about the training?
What salient points of the training stand out in your mind?
How have you applied the training content to your work
situation?

What impact has the training had upon you?

What differences have you noticed in your work since
participating in the training?

What differences have you noticed in your clients since
participating in the training?

What would you change about the training?

What would you change about the module package?

What did you like in the training?

Would you recommend the training to others?

217

- ‘ . - air-I mam