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People with Developmental Disabilities
Speak Out on
Qualityof Life
Living
Working
+
Playing
+
+
+
+
+
+
+
Loving
World Institute on Disability
510 16th Street @ Oakland, CA 94612
People with Developmental Disabilities
Speak Out on
Quality of Life
A Statewide Agenda for Enhancing the
Quality of Life of People with Disabilities
Authors: Valerie Vivona, M.S.
Deborah Kaplan, J.D.
Consultant: David Goode, Ph.D
ProjectParticipants: Simi Litvak, Ph. D.
Ed Roberts, M.S.
Mary Pugh
March 1990
World Institute on Disability
510 16th Street
Oakland, CA 94612
(415) 763-4100
FAX (415) 763-4109
This project was funded by a grant from the Department of Health and Human Services, Office
of Human Development Services/Administration on Developmental Disabilities, Grant
#90DDO15801/01.
Project Staff: Valerie Vivona, Project Coordinator
Deborah Kaplan, Project Director
Table of Contents
Acknowledgements
iii
Key Recommendations
V
Chapter 1 Introduction
1
Chapter 2 Background
3
Chapter 3 History of the California Quality of Life Project
5
Initial Planning
5
Project Goals
6
Use of Local Planning Groups
6
Purpose
6
Process
6
Recruitment and Participation of Primary Consumers
7
Challenges Faced
7
Solutions
7
Conference Agendas
9
Evaluation
9
Demographics
10
Table 1: Conference Participants and Questionnaire Respondents by Area
10
Table 2: Average Age
10
Table 3: Marital Status of Participants
11
Table 4: Participants With/Without Children
11
Table 5: Living Arrangements of Participants
11
Table 6: Modes of Transportation Used by Participants
12
Table 7: Type of Educational Institution Attended
12
Table 8: Work Setting of Participants
12
Table 9: Ethnicity of Participants
13
Table 10: Areas Represented by Participants
13
Evaluation
14
Future Conferences
14
Have the Primary Goals of the Conferences Been Accomplished?
14
Chapter 4 Conference Results: What We Learned
17
Participants
17
Summary of Data
17
Working
17
I. Issues Related to Working
17
II. Recommendations Related to Working
19
Living
20
I. QOL Issues Related to Living/Residences
20
II. Recommendations Related to Living/Residences
22
Loving and Relationships
22
I. Issues Related to Loving and Relationships
22
II. Recommendations Related to Loving and Relationships
23
i
Playing/Recreating
24
I. Issues Related to Playing/Recreating
24
II. Recommendations Regarding Playing/Recreating
25
Chapter 5 Conclusion
27
Reference
28
Appendices
29
Appendix A: Project Overview
29
Appendix B: Flyer
30
Appendix C: Registration Form
31
Appendix D: Conference Agenda
32
Appendix E: Small Group Primary Purposes and Process Instructions
34
Appendix F: Questionnaires
36
Appendix G: Speeches
39
About the World Institute on Disability
43
Partial List of WID's Projects
43
Board of Directors
44
ii
Acknowledgements
California Quality of Life Project Advisory Committee
People First
Barbara Blease
Hanna Margolis
Robert Rosenberg
Beverly Evans
Connie Martinez
Kevin Schaefer
Shane Berli, Developmental Disabilities Council, Sacramento
Carol Foster, Council and Staff of UAP, UC Irvine
Alan Kerzin, Area Board IV, Sonoma
Charlene Jones, Area Board V, Oakland
Judy McDonald, California Association of Rehabilitation Facilities, Sacramento
Miriam Mincus, San Andreas Regional Center, San Jose
Larry F. Rice, People First, Santa Rosa
Carol Risley, Organization of Area Boards, Sacramento
Jim Shorter, Northern Los Angeles Regional Center
Alana Theriault, Center for Independent Living, Berkeley
Burns Vick, Vick and Associates, Sacramento
Al Zonca, Protection and Advocacy, Sacramento
Local Planning Committees
Oakland
Renee Cameto
Leslie Gordon
Pat Kirkpatrick
Charlene Jones, Area Board V.
Larry F. Rice, People First, Santa Rosa
Kathleen Lankawsky, United Cerebral Palsy
Alana Theriault, Center for Independent Living, Berkeley
San Jose
Tamara Gilbert
Jan Omalley
Tom Johnson
Anila Bowers, Greater Opportunities
Colleen Bryant, Greater Opportunities
Theresa Crane, Greater Opportunities
Larissa Cummings, Regional Center of the East Bay
Jean Gillespie, Adult Independence Development Center
Margaret Jacobsen, Protection and Advocacy
Karen McGee, Housing for Independent People
Miriam Mincus, San Andreas Regional Center
Robyn Olsen, Agnews Developmental Center
Patricia Serra, United Cerebral Palsy Association
Marty Schulter, Disabled Students Program, San Jose State University
iii
Sonoma
Teresa Cuzzi
James Murphy
Larissa Cummings - Regional Center of the East Bay
Alan Kerzin, Area Board IV
Theresa Murphy, Sonoma Developmental Center
Nancy Powers-Stone, Brain Impaired Adult Resource Center
Larry F. Rice, People First
Cindy Ruder, Area Board IV
Cynthia Scarborough
Los Angeles
John Jacobs
George Thompson
Cherry Beamer, North Los Angeles Regional Center
Melody Goodman, Area Board X
Kevin Schaefer, People First
Linda Slack, United Cerebral Palsy
San Bernardino
Susie Feldshaw
Ralph Jacobson
Lynn Johnson
Bill Frake
Gary Little
Geraldine Lyons
Alice Morse and Rick Bennett, Ontario Pomona Aid to Retarded Citizens
Jane Brown, Area Board XXII
Cheryl Crowe, Pomona Valley Workshop
Kathy Fraser, Redlands Valley Rehabilitation
Hannah Margolis, Lanterman Developmental Center
Masami Mugishi, Inland Regional Center
Dino Raymondi, Adult Basic Learning Environment
Wendy Rogina, Vocational Improvement Program
Ron Sheppard, United Cerebral PalsyRichart Barela
San Diego
Vince Bramy
Mike Hansen
Dena Huiras
James Hall
Kathy Heitzman
Norma Rottenberg
Leslie Bryant, Area Board XIII
Sara Nelson Couran, Area Board XIII
Bill Hampton, Community Service Center for the Disabled
Julie Racino, Center for Human Policy, Syracuse New York
David Hancox, Minnesota Governor's Planning Council on Developmental Disabilities
A Special Thank You to:
Gail Cornwell
Ed Ferran
Arlene Magarian
Robyn Keehn, Area Board II
Dick Stein, Cerebral Palsy Center
iv
Key Recommendations
Working
Self Advocacy Groups should be a priority when it comes to funding and policy
decisions regarding persons with developmental disabilities. People need to know
their rights and responsibilities as workers.
Widespread education programs are needed to teach employers, care providers, and
the greater community to see the abilities not the disabilities of consumers.
Living
Increased funding needs to be provided for independent living skills training, thereby
making it available to all consumers regardless of the nature of their disabilities or
where they live.
Peer counseling should be made available to primary and secondary consumers. The
provision of positive role models is essential to empowerment.
Loving
Services which provide information and counseling on issues related to relationships
need to be accessible to persons with disabilities both in terms of programmatic and
physical access. Issues identified were sexuality, parenting, adoption, sexual abuse,
and AIDS.
Playing
Independent Living skills training programs need to teach consumers how to find out
what activities are happening in the community, where they are located, and how to
get there.
Public Places and programs need to be made fully accessible in order for people with
disabilities to integrate socially in the community.
V
Jm
GOVS
ORES
STONE
Participants, Oakland Quality of Life Conference
Photograph by Dick Stein
1
Introduction
"It was like being back in early 1776 in the
White House and imagining we were people
like George Washington, Thomas Jefferson,
and others dealing with freedom and rights."
- Participant, Quality of Life Conference
"Quality of Life" has become a popular phrase in current society. What is our level of satisfaction
with our daily lives, work, relationships, our living situations? Our quality of life is tied to the freedom
to choose our own lifestyle. Granted, research on quality of life has shown that what determines quality
of life is complex, subjective, and may be somewhat restricted by economic and social parameters. But
if most of us were asked whether we chose the place we live in, the job we go to each day, the people
we spend our social time with, we would answer "yes," at least for the most part. If asked whether we
were basically happy with our quality of life, we would say, on the whole, "yes." Unfortunately, people
with developmental disabilities would be less likely to answer "yes".
Reflecting a growing interest in the subject of Quality of Life in the field of developmental
disabilities, the Administration on Developmental Disabilities (ADD) provided a grant to the World
Institute on Disability to coordinate the California Quality of Life (QOL) Project. Funding for this and
similar projects recognizes the importance of having people with disabilities directly involved in the
service delivery and decision making processes which affect their lives. The purpose of the QOL Project
was to speak directly with persons with developmental disabilities (consumers of services) and ask them
to define for themselves the issues that are significant in their daily lives. This was accomplished by
hosting a series of conferences throughout the state of California from June to October of 1989 in the
following locations: Oakland, San Jose, Sonoma, Los Angeles, San Bernardino and San Diego.
Coincident with the California QOL Project, similar projects were being conducted in New York
and in Finland. All three projects build upon the findings of the National Quality of Life Project
conducted by the Mental Retardation Institute in Valhalla, New York, and funded by the Administration
on Developmental Disabilities, Office of Human Development Services, Washington, D.C.
1
James Gonsalves
Small Group, Oakland Quality of Life Conference
Photograph by Dick Stein
2
Background
"Help is most beneficial when I ask for it, not
when others feel I need it."
— Participant, Quality of Life Conference
The National project on the subject of QOL as it relates to persons with developmental disabilities
began with a study of the research literature on QOL. This resulted in a framework for discussion of
QOL issues which was piloted by a work group consisting of professionals, advocates and self advocates.
The purpose of the work group was to discuss and define QOL issues and to "validate the framework
as a way to generate guidelines in specific settings and age groups." (Goode, 1988a) Goode's framework
was guided by these four important principles:
1. QOL for persons with disabilities consists of the same factors and relationships that are
important to persons without disabilities.
2. The QOL of an individual is intrinsically related to the QOL of other persons in his or her
environment.
3. QOL is experienced when a person's basic needs are met and when he or she has the
opportunity to pursue and achieve goals in major life settings.
4. QOL should be defined by the consumer and not by professionals. It is how the individual
views his or her situation that determines the QOL he or she experiences.
In April, 1988 a National Conference on Quality of Life for Persons with Disabilities was held in
New York State. Approximately one quarter of the participants were persons with disabilities and
members of their families.Areas of discussion at this conference were family life, residential life,
community participation, education, and work.
The culmination of the National Quality of Life Project was a final paper entitled Principles and
Recommendations of the Quality of Life Project. (Goode, 1986b) The paper focuses on consumer related,
provider/professional and systemwide recommendations on QOL issues based upon the project's
activities.
The California QOL Project based its principles and practices on the model described above.
However, because all participants attending the California conferences were persons with deve lopmental
disabilities, the process for discussion was modified in order to maximize the participation of the
participants.
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Participant, Oakland Quality of Life Conference
Photograph by Dick Stein
4
3
History of the California
Quality of Life Project
"Disabled People can learn to live independently
from the experiences of other disabled people."
- Participant, Quality of Life Conference
Initial Planning
The first activity of the California QOL Project was to convene a statewide advisory committee
meeting in April of 1989. Approximately one half of the members attending this meeting were persons
with developmental disabilities. Representation included the Center for Independent Living (Berkeley),
Capitol People First, as well as Area Boards, Protection and Advocacy Inc., and the California
Developmental Disabilities Council (parts of the Developmental Disabilities service system). David
Goode attended as a consultant to the project.
A full list of the members of the Advisory Committee is included in the Acknowledgements at the
beginning of this report. Four members of the committee were persons with cognitive disabilities and
attended the meeting with "facilitators" (in this case the "facilitators" were Advisors to People First).
The role of the facilitator was to assist the individual with a developmental disability to communicate
his/her ideas to the group and to help interpret written and orally presented information which may
be difficult to understand.
Three major outcomes of the first advisory committee meeting were:
1. A recommendation to focus the project outreach activities on the recruitment of adult
primary consumers at the conferences. It was felt that the attendance of professionals
and parents at the conferences would inhibit the participation of adults with deve lopmental
disabilities. (This is discussed in more depth on page 7.)
2. The formation of subcommittees to coordinate planning activities for local conferences
in six locations. Some members of the advisory committee volunteered to serve on local
planning groups in their area coordinating the planning activities in the six different
locations statewide.
3. A recommendation that the project develop a one page overview describing the project
and listing the primary goals of the project. ( See Appendix A: Project Overview).
5
Project Goals
A one page project overview was developed which listed the following as the primary goals of the
California QOL Project:
1. To enable consumers to identify for themselves the issues that are significant in their daily
lives.
2. To create a data base on Quality of Life issues as defined by primary and secondary
consumers.
3. To use this data base to impact social policy, legislation, research, training and the provision
of community services in the area of disability.
4. To enhance consumer self advocacy through participation in the conference process.
5. To establish a statewide network of primary consumers that can influence social policy on
decisions which effect their lives.
6. To produce a final report which will express consumers' views on "What Makes for Quality
of Life."
Use of Local Planning Groups
Purpose
Local planning groups were created for each conference to coordinate local planning activities.
Members of the advisory committee participated in planning efforts in their local area. For the most
part, the regional Area Boards played a central role in the local planning effort. Emphasis was placed
on recruiting individuals with disabilities both cognitive and physical) to serve on the local planning
groups. This was one of the Project's activities that met our goal of enhancing consumer self advocacy
by having these individuals help plan the local conferences and lead or co-lead small group workshops
at each conference. Members of the local
planning groups included representatives from
People First, Protection and Advocacy, United
Cerebral Palsy, a wide range of residential and
housing programs, and Independent Living
Programs.
Process
WID recommended a specific process to
the local planning groups in order to insure
consistency of planning efforts and maximize
the recruitment and active participation of
primary consumers at the conferences. This
was done out of our recognition that the project
Participants, Oakland Quality of Life Conference
staff could not be physically present at most
Photograph by Dick Stein
local planning group meetings and that the
local groups would require some guidance from the project in order to be effective in their planning.
The process began by identifying a local coordinator (usually a staff member of the local Area
6
Board). After discussing the goals and objectives of the project we requested that the coordinator
conduct outreach to community organizations providing services to persons with developmental
disabilities and assemble a committee to organize the local QOL conference. The importance of
recruiting persons with disabilities to sit on the committees and play key roles in planning and leading
the conferences was emphasized. The coordinator was then provided with budgetary guidelines,
technical assistance and written training materials.
Project staff were in constant communication with the local planning groups to provide
technical assistance and monitor their progress.
Recruitment and Participation of Primary Consumers
Challenges Faced
WID staff followed the advice of the advisory committee and local planning groups to concentrate
conference recruitment efforts on the participation of primary consumers. From the first conference on,
participants were very vocal about limitations placed on them by parents and providers and reinforced
the decision to make a priority the obtaining of honest, uncensored statements about QOL from
primary consumers. Active participation of significant numbers of secondary consumers and service
providers would have stifled primary consumer input.
Two challenges presented themsel with respect to gathering information from primary consumers
in a conference format:
To assure that primary consumers would be able to get to the conference sites and to
assure that they were able to participate throughout the entire conference.
To create a comfortable and safe atmosphere for primary consumers to express
themselves honestly, fully and perhaps to express strong emotions.
Solutions
1. Volunteerism/Paid Participation: In order to ensure the participation of primary consumers
on the advisory committee, a small stipend was paid to consumer members. The amount of time
primary consumers can spend working on projects unrelated to their employment is limited,
especially for those employed in private industry. WID did not feel it would be appropriate to
request primary consumers, who often earn the minimum wage or less to assist the project
without offering meaningful compensation in return, given that those who work in this field
do receive compensation for such activities.
2. Outreach: The goal of the outreach was to recruit an approximate total of three hundred
participants for all six conferences. Outreach was conducted by asking local planning group
members to go back to their organization or agency and recruit five to ten interested individuals
to register for the conference. This was done informally by either speaking with people
individually or making announcements in classes. WID suggested this personalized recruitment
style SO that there would not be more people registered than could be accommodated at the
conferences. "Speak Out and Be Heard" was chosen as the theme of the conference. A flyer
was designed with an attached pre-registration form. (See Appendices B and C: Flyer and
Registration Form.) Through pre-registration coordinators knew how many participants would
7
be attending, as well as the kinds of services required by participants in order to fully participate.
These services included transportation, attèndant care and sign language interpreters.
3. Site selection: Conferences needed to be held:
a) Where there were large concentrations of primary consumers of levelopmental services, and
b) Where service agencies were especially committed to advertise and coordinate transportation
as the issue of transportation was a major factor.
With respect to the physical site, the same considerations of accessibility, appropriateness
of atmosphere (a conference seeking to promote the autonomy of persons with disabilities
would ideally be held in attractive and mainstream settings, i.e., hotels, community centers),
and the proximity to public transportation needed to be considered and studied in advance.
There was however one deviation from this plan. WID decided to hold the second
conference at the Sonoma Development Center. This decision came after a long discussion at
our second advisory committee meeting. The consensus was that if at least half the participants
at this conference were people living in the community an exchange of information could be
facilitated which might be of value to both groups. Sonoma Development Center staff were
asked not to attend the conference. This was essential to the level of trust participants would
have in sharing information and was respected by Sonoma staff. For example, a participant in
the Living workshop who has been a resident at Sonoma Development Center for many years
asked the workshop leader what he needed do in order to move into the community. He is now
working with a local advocacy organi-
zation to accomplish this goal.
4. Transportation: The decision to have
consumers attend and participate in
the conferences as independently as
possible, required careful attention to
the issue of transportation to and from
the conferences. Primary consumers
with cognitive disabilities often travel
on charter carriers with rigidly specified
hours of service, which often results in
consumers arriving late to conferences
and having to leave conferences early
in order to accommodate the driver's
schedule. Having care providers and
professionals transport and accompany
consumers to the conferences presented
another problem. The presence of
individuals who exert a significant
amount of control over the lives of
consumers could create a poor environ-
ment for the free exchange of ideas,
Participant, Oakland Quality of Life Conference
feelings and concerns. These potential
Photograph by Dick Stein
8
problems were prevented by working closely with our local planning groups on promoting,
coordinating and funding alternative means of transportation. This presented a challenge since
some providers and professionals were initially reluctant to have their clients attend the
conferences independent of supervision. With the support and encouragement of the local
planning committee the vast majority of individuals attending the conferences arrived and
departed on schedule and without incidence. This was accomplished by hosting the confer-
ences near public transportation (which was possible for the Bay Area Conferences where Bay
Area Rapid Transit is available as well as direct bus lines), by contracting with paratransit
services which agreed to accommodate our schedule and by providing mileage reimbursement
for individuals known to local planners who expressed an interest in transporting participants.
5. Attendant services: In order to enable as many consumers as possible to attend the
conferences, WID hired a pool of experienced attendants from the community to assist
participants with their personal and mobility needs. WID staff received positive comments
about the attendants employed. Participants stated they were treated with respect and
consideration and for many it was an important factor in their enjoyment of the conference.
Conference Agendas
Each conference began with a panel consisting of two WID staff members and a primary consumer
member from the local community. (See Appendix D: Conference Agenda) The utilization of primary
consumers as role models, energizers, and enablers was of absolute importance in gathering input from
consumers.
During the morning the primary consumer member of the panel spoke about the quality of their
own life - past, present, and future- thereby setting the tone for the day. The same panel member
facilitated two sessions of one of the four small group work shops: Living (Residence), Loving
(Relationships), Working (Employment and Training), and Playing (Recreation). These topics were
chosen because they encompass a broad area for discussion on QOL while still providing sufficient focus.
Most small group workshops were led by a two-person team including at least one person with a
disability. The disabled team members were consumers in the Developmental Disability System and/
or active advocates in the disability field. Frequently the non-disabled team member was an advisor
to a local self advocacy group. (See Appendix E: Small Group Primary Purposes and Process
Instructions.) Other ways in which primary consumers were actively encouraged to participate were
by contributing to the morning's large group discussion on past, present and future which followed the
keynote speaker's talk. Also participant volunteers reported on the activities of their small groups to
the larger session in both the morning and afternoon.
Evaluation
A three page evaluation of the conference was completed by participants at the end of the day on the
following topics (See Appendix F: Questionnaire QOL Conferences):
1. Demographics
2. Evaluation Comments
3. Future Conferences
9
Demographics:
The following tables provide background information on who attended the conferences. The
average participant was a single thirty-three year-old, who received special education and now lives in
a group home or with parents, and participates in sheltered employment. The majority of individuals
rely on public transportation or rides from parents or other family members. The tables indicate that
a small but noteworthy number of participants are parents. Also noteworthy is that the San Diego and
San Jose conferences had the largest number of participants living independently and by observation
the liveliest discussions.
Although it was not appropriate to ask the nature of the participants' disabilities, our overall
impression is that substantial numbers of participants were cognitively disabled, with physically
disabled individuals representing about one third of the total. Persons with hearing or visual disabilities
were present but in much fewer numbers. Please refer to the tables for more information on
demographics.
Initial wording on questionnaire: Would you tell us a little bit about yourself SO we could have an
idea of who came to the conferences? Please do not put your name on this sheet. (Note: The
demographics section of the evaluation questionnaire was not available at the Oakland conference.)
Table 1: Conference Participants and Questionnaire Respondents by Area
Conference City
Participants
Respondents
#
%
#
%
San Diego
48
23%
44
24%
San Jose
34
16%
32
18%
Sonoma
38
18%
27
15%
Los Angeles
46
21%
31
17%
San Bernardino
47
22%
46
26%
Total
213
100%
180
100%
Question: How old are you?
Table 2: Average Age
Conference City
San
San
Los
San
Diego
Jose
Sonoma
Angeles
Bernardino
Average Age
34.5
29
33
34
32
10
Question: Marital status:
a. Married
b. Widowed or divorced
C. Do you live with a girlfriend or boyfriend?
d. Single
Table 3: Marital Status of Participants
Conference City
San
San
Los
San
Total
Diego
Jose
Sonoma
Angeles
Bernardino
#
%
Married
5(11%)
2(6%)
2(7%)
1(3%)
3(7%)
13
7
Widowed/Divorced
1(2%)
2(6%)
0
2(6%)
2(4%)
7
4
With Significant Other
1(2%)
1(3%)
3(10%)
1(3%)
2(4%)
8
4
Single
38(84%)
27(84%)
24(82%)
28(87%)
39(84%)
156
85
Total Number (100%)
45
32
29
46
32
184 100%
Question: Do you have children?
Table 4: Participants With/Without Children
Conference City
San
San
Los
San
Total
Diego
Jose
Sonoma
Angeles
Bernardino
#
%
With Children
6(14%)
3(10%)
1(4%)
2(7%)
1(2%)
13
.7
Without Children
38(86%).
28(90%)
27(96%)
30(93%)
43(98%)
166
93
Total Number (100%)
44
31
28
32
44
179
100
Question: What type of place do you live in?
a). In own home or apartment, by myself b) Shared home or apartment with roommate
c) with parents d) group home e) institution/nursing home
Table 5: Living Arrangements of Participants
San
San
Los
San
Total
Diego
Jose
Sonoma
Angeles
Bernardino
#
%
Alone in Home/Apt.
15(34%)
6(19%)
2(7%)
6(18%)
7(15%)
36
20
Composite
52%
55%
21%
24%
36%
With Roommate
8(18%)
11(36%)
4(14%)
2(6%)
10(21%)
35
19
With Parents
8(18%)
5(16%)
2(7%)
11(33%)
8(17%)
34
19
Group Home
10(23%)
4(13%)
11(39%)
14(42%)
20(43%)
59
32
Institution
1(2%)
5(16%)
9(32%)
2(4%)
17
9
Other
2(5%)
2
1
Total (100%)
44
31
28
33
47
83 (99%)
11
Question: How do you get to places you want to go? (You can check more than one.)
a) Own car or van
b) Friends or relatives take me
c) Public transportation
d) Walk
e) Taxi
f) Other
Table 6: Modes of Transportation Used by Participants
San
San
Los
San
Total
Diego
Jose
Sonoma
Angeles
Bernardino
#
%
Own Car/Van
7(16%)
4(13%)
6(16%)
6(19%)
6(13%)
29
16
Friends/Relatives
18(41%)
12(38%)
13(48%)
13(42%)
19(41%)
75
42
Public
21(48%)
20(63%)
9(33%)
15(48%)
22(48%)
87
48
Walk
15(34%)
10(31%)
6(22%)
9(29%)
14(30%)
44
24
Taxi
8(18%)
8(25%)
1(4%)
0
o
17
9
Other
8(18%)
4(13%)
8(30%)
5(16%)
14(30%)
39
7
Question: What kind of school did you go to? a) Special eduction
b) Regular education
Table 7: Type of Educational Institution Attended
San
San
Los
San
Total
Diego
Jose
Sonoma
Angeles
Bernardino
#
%
Special Rducation
29(67%)
24(73%)
24(80%)
18(64%)
30(67%)
125
70
Regular Education
14(33%)
8(24%)
5(17%)
10(36%)
14(31%)
51
28
No Education
1(3%)
1(3%)
1(2%)
3
2
Total (100%)
43
33
30
28
45
179
100
Question: Where do you work?
a) Competitive employment in a regular job setting
b) Supported employment c) Sheltered workshop
d) Day program
e) Other
f) I don't work
Table 8: Work Setting of Participants
San
San
Los
San
Total
Diego
Jose
Sonoma
Angeles
Bernardino
#
%
Regular Job
15(30%)
7(21%)
3(10%)
4(13%)
7(13%)
36
18
Supported Employment
8(16%)
5(15%)
4(14%)
4(13%)
13(24%)
34
17
Sheltered Workshop
21(42%)
9(27%)
12(41%)
5(16%)
13(24%)
60
30
Day Program
4(8%)
6(18%)
3(10%)
6(19%)
9(16%)
28
14
Other
2(4%)
2(6%)
o
3(9%)
7(13%)
14
7
No Employment
0
4(12%)
7(24%)
10(31%)
6(11%)
27
14
Total (100%)
-50
33
29
32
55
199
100
12
Question: What's your ethnic background? a) African American b) Latin
c) Asian/Pacific d) White
Table 9: Ethnicity of Participants
San
San
Los
San
Total
Diego
Jose
Sonoma
Angeles
Bernardino
#
%
African-American
2(5%)
2(6%)
2(7%)
6(18%)
3(7%)
15
9
Latino
4(9%)
3(10%)
2(7%)
4(12%)
6(13%)
19
12
Asian-Pacific
1(2%)
1(3%)
o
o
2(4%)
4
2
White
35(81%)
25(81%)
24(75%)
23(70%)
35(76%)
122
76
Indian
1(2%)
1
.1
Total (100%)
43
31
28
33
46
161
101
Question:
What city or town do you live in?
Table 10: Areas Represented by Participants
San Diego Conference:
La Jolla, Chula Vista, Holtville, El Centro, Spring Valley, El
Cajon, San Diego, Escondido, La Jong, Centrol, La Mesa,
Romona, Lemon Grove
San Jose Conference:
Sunnyvale, San Jose, Soquel, Salinas, Santa Cruz, Prunedale,
Almaden Valley, Capitola, Watsonville
Sonoma Conference:
Santa Rosa, Petaluma, Elridge, Sonoma, Cotati, Sacramento,
Rohnert Park, Renn Grove
Los Angeles:
North Hollywood, Paramount, Lancaster, Los Angeles, Arleta,
Woodland Hills, Northridge, Temple City, Compton, Pasadena,
Canoga Park, Whittier, Riverside, Sherman Oaks, La Miracha
San Bernardino:
Rialto, Palm Springs, Hemet, Desert Hot Springs, Riverside,
Claremont, Chino, San Dimas, Pomona, Mentone, Fontana, Red
Lands, Moreno Valley, Grand Terrace, Ontario, Yu Caipa, R.C.,
Corona, San Bernardino
13
Evaluation Comments
A random sample of one quarter of the participants from each of the six conferences was taken with
the following results.
Yes
No
Comments
1. Did you enjoy the conference?
51
2
2. Did you like the topics selected?
50
1
3. What other things would you
Basic civil rights, understanding my disability
have liked to talk about?
better, changing the conditions of board and
hospitals, how to make it easier for handicapped
people to get aid, computers having children
4. Did you have an opportunity to
45
8
say what was on your mind?
5. Is there anything that would have
9
35
Sleep; a waterbed; being closer so I could
made you more comfortable?
see better.
6. Did you have enough help?
35
9
7. What was the best part
Speaking my mind-explaining the rights of
of the day?
my independence, hearing all the things that
people went through, the Living Workshop,
love and the family, being a leader.
Future Conferences
Yes
No
Comments
1. Would you be interested in
attending another conference?
48
8
2. If SO would you be willing to
50
1
help plan the conference?
33
17
3. Do you have any friends that
might be interested in attending
a conferencelike this?
42
8
Have the Primary Goals of the Conferences Been Accomplished?
In addition to the positive conference evaluations we received, an important question that we asked
ourselves is whether the project, on the whole, has been successful. In order to answer this question,
we reviewed the goals of the project, as originally set out in our project proposal and pursuant to the
recommendations of the project's Advisory Committee. In the following paragraphs, we discuss our
accomplishments in reaching each goal:
14
1. To enable consumers to identify for themselves what is significant in their daily lives.
Conference participants were able to clearly articulate the issues that are central to their every
day lives, as the data illustrates.
2. To create a data base as defined by pri-
mary consumers.
This report contains a synthesis of the
information given by consumers at the
six conferences, including recom-
mendations for improving services and
policies which affect the lives of persons
with developmental disabilities.
3. To use this data in order to impact
social policy, legislation, research and
the provision of community services
in the area of disability.
A draft of this report has already been
disseminated at a statewide conference
which focused on creating a vision of
excellence for the lives of persons with
developmental disabilities (the
Lanterman 2000 Conference), as input
for a Supported Employment
Participant, Oakland Quality of Life Conference
conference in the Bay Area, and will be
Photograph by Dick Stein
part of a proposed training curriculum for case managers on empowering their clients. This
report will be disseminated nationally to the State Developmental disabilities Councils,
University Affiliate Programs, and Protection and Advocacy Offices. Continuing efforts will
be made to disseminate this report broadly and to use the information to impact state and federal
policy as it relates to persons with disabilities.
4. To establish a statewide network of primary consumers that can influence social policy on
issues which effect their lives.
Based on reports from some local conference coordinators, local consumers are enthusiastic
about planning and participating in future local self advocacy conferences as a result of their
participation in the QOL conference. Some participants have spoken with WID staff and some
Area Boards regarding their interest in working on local committees and receiving training to
improve their self advocacy and advocacy skills and these requests are being fulfilled.
Additionally, a mailing list of all conference participants has been prepared and will be used to
share information and connect consumers statewide to respond to legislative proposals and
other activities which affect the lives of people with disabilities.
5. To produce a final report on "What makes for Quality of Life."
The data and recommendations sections of this report detail what makes for Quality of Life as
seen through the eyes of persons with developmental disabilities.
15
BANSTORTATION PRODUCTS
12. Need more buses on route
tween Caturi.,
of ute for work
Disability awarent traing
ke much you
Riders not aware of needs
Charlene Jones
Small Group Leader, Oakland Quality of Life Conference
Staff member, Area Board V
Photograph by Dick Stein
16
4
Conference Results:
What We Learned
"People get in the way of our decision
making by making decisions for us instead
of letting us speak for ourselves."
— Participant, Quality of Life Conference
Participants
An average of forty to fifty persons with disabilities participated in each local conference.
Each conference participant had the opportunity to attend two of the four workshop sessions offered
(Living, Loving, Working, and Playing). The following is a summary of the major issues and
recommendations generated by consumers at the six local conferences. Each of the four sections
includes a summary of the major issues that were identified, recommendations for change and quotes
by the participants.
Summary of Data
Working
I. Issues Related to Working
1. Salary
Wages need to be increased SO that people can earn enough money to support themselves.
Wages are low and people are limited in the amount of hours they can work to earn more
money. Down time periods where there is no work to be done contribute to low earnings by
employees paid on a piece work basis.
2. Sheltered Employment
Sheltered employment segregates people with disabilities from the community. Job tasks are
often boring and repetitive. Jobs at the workshops were described by some as dead end jobs with
no opportunity for advancement.
17
3. Public Benefits
There is a lack of understanding regarding benefits such as SSI, SSA, IHSS, and self support
plans. Consumers feel they will be penalized by a loss of benefits if they earn more money. There
is a desire to learn more about these programs and how they can improve an individuals QOL.
4. Training
Training is needed in all areas of pre-employment including: job search, such as writing a
resume, filling out job applications, job interviews etc. Consumers desire training in knowing
their rights and responsibilities as workers and in improving communication skills in order to
better relationships with employers and coworkers.
5. Technology
Technology, in particular computers and specialized adaptive equipment needs to be designed
and made available to persons with disabilities. The use of technology to adapt job tasks to a
person's abilities will broaden the opportunities for persons with disabilities in the area of
employment.
6. Attitudes
Attitudes towards persons with disabilities have a negative effect on self image. Persons with
developmental disabilities are often treated as children by parents, employers and service
providers and are not encouraged to take the necessary risks needed to improve the quality of
their lives.
7. Freedom of Choice
Freedom to choose a, job that a person feels they would enjoy is seen as a essential to job
satisfaction. Consumers expressed interest in jobs where they could provide services to other
people particular to people, with disabilities. This broad area of job development needs to be
given attention by policy makers in the field of employment and disability.
Participant Comments
I would like
a job in
broadcasting, disability politics, child care, acting,
to work
in the family business, with disabled children, in a hospital,
with people with disabilities,
to be
a chef, an electronics engineer,
to manage a store, run my own business, take child development classes.
8. Accessibility
Accessible transportation is seen as essential to the successful employment of people with
disabilities. Some of the major problems mentioned were: inaccessible buses, lack of public
transportation to and from the work site, infrequent bus service in certain areas, the high cost
of paratransit, and the rules requiring rides to be scheduled far in advance. Consumers also
18
expressed the need for training on how to use public transportation, learning bus routes,
applying for discount transit cards, education on disability for transit workers.
9. Environment
A pleasant working environment is very important to job satisfaction. Excessive noise,
lack of privacy, arguments with coworkers, and lack of friends on the job were stated as
some of the major problem areas related to work environments.
II. Recommendations Related to Working
1. Support Self advocacy
The system needs to give more support to self advocacy groups where consumers can learn their
civil rights and how to improve their communication skills. Self advocacy groups should be a
priority when it comes to funding and policy decisions. Care providers should be encouraged
and supported by employers to facilitate consumers in the process of starting and maintaining
self advocacy groups. The responsibility for leadership of these groups should be placed in the
hands of consumers.
2. Public Education
Widespread education programs are needed to teach employers, providers and the greater
community "to see the abilities not the disabilities" of consumers. Lack of information leads
to stereotyping and labelling and creates barriers to consumers participating fully in the job
market and in the community.
3. Supported Employment
Consumers need to advocate for supported employment which expands the availability of job
opportunities, offers comprehensive training on all aspects of obtaining and maintaining
employment and addresses the need for social support systems in integrated work settings.
4. Political Action
Consumers need to vote and lobby local, state and national leaders on issues which effect the
integration and full participation of persons with disabilities into society. The issue of
transportation was frequently mentioned as an issue where local political action can be
effective. According to consumers, writing letters, making phone calls and attending local
meetings has already proven successful in making transportation systems more accessible in
some areas.
Participant Comments
"Basically we want the same things you want from a job: happiness, more money, doing
what we enjoy, working where we want, regular hours, and privacy."
" For most people, workshops lead nowhere. Workshops should be closed. We
want the money to go to supported employment."
"Workshops have the same work that has to be done over and over again."
" No one votes, but I would vote if my SSI were at stake."
19
5. Work Relations
Consumers need to arrange meetings with their coworkers to discuss problems at work. Some
persons suggested organizing a union so that employees rights can be represented.
Living
I. QOL Issues Related to Living/Residences
1. Freedom of Choice
Choosing ones own lifestyle is the first and most important step in determining the quality of
a person's life. Options included: living alone, with a roommate or partner, with family or in
a small group home. Emphasis was placed on living in a manner as independent and as
integrated into the community as possible.
"I would like to live with my boyfriend."
"People that live in group homes should speak out"
"When I was sixteen my mother put me in Agnews, I don't
know why."
2. Decision Making
Independent decision making should be encouraged and supported by parents, care providers
and social workers. Overprotection and lack of communication are seen as major obstacles to
achieving goals. For example, consumers want a better understanding of their Individual
Program Plans (IPPs) so that they can have more control over the decision making process
which affects the services they receive.
"We are not given any credit for being able to take care
of ourselves."
"At twenty three I can make my own decisions. You have
to go for it when you know what you want."
3. Rights and Responsibilities
The right to privacy, to come and go without restriction (includes moving to a new residence),
and to have input into house rules are of utmost importance to consumers in their living
situations. Being able to get along with the people they live with and participating in household
responsibilities are also seen as important to successful living situations.
"We should be able to come and go freely and spend the
night away from the group home. We should not have to
ask permission for these things."
"We should have input into any program that is paid to
help us. We need to have more control."
20
4. Training
Independent living skills training should be available to all persons with disabilities regardless
of their current living situations. Consumers stated a need for training in the following areas:
money management, cooking, housekeeping, mobility, communication skills, tenants rights
(including the process of filing a writ to leave the Development Centers), self advocacy, hiring
attendants, medical management, and the use and availability of adaptive equipment "that
could make life easier," such as computers and calculators.
"We need to speak up more for ourselves. Self advocacy
groups help us do this but some consumers can't go to self
advocacy groups because their care provider will not
take them or let them go. Self advocacy needs to be the
first priority of the Regional Center. We need funding for
self advocacy, especially transportation, so that all
consumers can go to self advocacy groups."
5. Safety
The importance of safety out in the community and at home was a repeated theme at the
conferences. Issues discussed were protecting yourself when your out in the community,
prevention of sexual abuse, hiring the right attendants and procedures to follow at home in case
of an emergency. These issues were discussed cross-disability, however some concerns
pertained more to one disability group than another.
"I live alone, I need an emergency device to call for help
if I fall out of my wheelchair, but my social worker won't
pay for it."
"Staff at board and care homes should be screened more
carefully before they are hired."
6. Accessibility
There is a need for more affordable and accessible housing. Inaccessibility of friends' and
families' homes are obstacles to social integration and support. This is also true of inaccessible
community facilities, services and programs.
7. Community Support Services
Services which support the integration and full participation of persons with disabilities in their
communities need increased government funding. Services mentioned were attendant care,
ILS, transportation, advocacy and counseling programs.
8. Family Support
The respect, trust and understanding of family and friends contributes to a positive self image.
Consumers feel they are not treated as adults and afforded the same opportunities for challenge
as their nondisabled peers.
21
"There is a double standard for myself and my brothers
and sisters."
II. Recommendations Related to Living/Residences
1. The system needs to provide increased funding for independent living skills training thereby
making it available to all consumers regardless of the nature of their disability or where they live.
Consumers need to write letters and make calls to federal, state, and local officials to lobby for
increased funding of ILS and other community support services.
2. Peer counseling programs should be made available to primary and secondary consumers
receiving services through the system. The provision of positive role models is necessary to
empowerment.
3. Widespread training programs are needed to educate parents, care providers, social workers and
the general public on the capabilities and aspirations of persons with developmental disabilities.
The goal of these programs is to facilitate the process of community integration.
4. Social workers need to offer consumers greater input in the decision making process which
affects their lives. Making Individual Program Plans more understandable, basing IPPs on goals
that consumers have defined for themselves and supporting consumer participation in self
advocacy groups were some suggestions towards this objective.
5. Consumers need to learn the process of becoming independent by taking small steps such as
asking for support from friends, family and social workers, starting self advocacy groups, talking
to parents honestly, setting up meetings at home to discuss house rules, saving money to move
out and calling independent living programs to find out how to hire an attendant.
Loving and Relationships
I. Issues Related to Loving and Relationships
1. Self Esteem
Loving yourself, accepting other people as they are, trust, being able to take criticism, having
faith, being able to ask for help, being able to talk with friends about your feelings and being
respected and understood by others were said to contribute positively to a person's self image.
Issues of concern raised were jealousy, fear of intimacy, and recovering from the loss of
relationships.
"We need to feel good about ourselves, that's very
important."
2. Attitudes
Persons with developmental disabilities are frequently treated as children not adults. Some
parents and professionals think that people with disabilities should not have sexual relationships,
get married, or have children. These messages are frequently given indirectly by placing
restrictions on privacy and dating.
22
"I am not allowed to have sex with my boyfriend in my
bedroom, so where am I supposed to go."
"It's like a prison."
3. Privacy
Lack of privacy in residential settings was discussed at each of the six workshops. Consumers
want be able to have partners in their rooms, spend the night away, come and go without
permission, have privacy while using the phone and be able to do what they want in their
bedrooms without asking permission.
4. Relationships
There is a need to have more relationships of all kinds. Supportive family relationships are seen
as very important. For people with disabilities this means being treated equally - - not as
"different" - by family members. Parents' fears of their children being taken advantage of often
interferes with their becoming more self reliant and independent. More opportunities to
socialize and meet prospective friends and partners are needed. A major obstacle to this is lack
of accessible transportation which makes people with disabilities more dependent on parents
for rides and less independent.
"We want the same things as you want: marriage,
children, meet new friends, live with boyfriend or
girlfriend, a honeymoon, adopting children if we can't
have our own, to have someone to cook for and take care
of, and travel to see family members."
5. Parenting
There exists the need to provide consumers with information on pregnancy, adoption and child
rearing so that they can make informed choices regarding parenting. Related to this is the need
for parenting classes, for attendant care services to assist parents with disabilities in caring for
their children, and for legal protection to insure that children will not be taken from parents
solely on the basis of disability.
"When my son was two days old he was taken from me;
I felt sad."
II. Recommendations Related to Loving and Relationships
1. Support and information sharing groups are needed for parents of disabled children and adults.
Groups such as these would assist in dispelling myths about disability and provide ongoing
support for families with the purpose of encouraging the independence and integration of the
disabled family member.
23
Participant Comments
I would like to
go out with just one friend, visit a friend, out on a date on Saturday night, dancing at
the Oktoberfest, out on the bus by myself,
go to the beach, opera, ballet, theater, museum,
go whale watching, horseback riding, swimming, skiiing,
take a trip to Hawaii, Catalina, Australia, England, Alaska, Jamaica,
play tennis, ride on an airplane, learn to sew, operate a computer.
Relax.
2. Social workers need to provide consumers with information and services related to sexuality
and they should also work with residential providers on issues of privacy and the rights of their
clients.
3. Services which provide information and counseling on issues related to relationships need to
be accessible to persons with disabilities both in terms of programmatic and physical access.
Issues by consumers were sexuality, AIDS, sexual abuse, parenting and adoption.
Playing/Recreating
I. Issues Related to Playing/Recreating
1. Decision Making and Information
People want to make their own decisions on how and with whom to spend their leisure time.
Inflexible schedules at residential facilities and needing to ask permission from parents and
providers to go out are two barriers to the enjoyment of leisure time.
2. Information and Networking
There is a need to learn what social activities exist in the community and how to meet people
with similar interests.
3. Accessibility
Public places and programs need to be made fully accessible in order for people with disabilities
to integrate socially in the community: examples of this are closed captions on films and
adaptive sporting equipment.
4. Integration
Lack of accessible transportation on evenings and weekends is a barrier to enjoying a
satisfying social life.
There is a desire to participate in integrated social activities; some examples of these are
attending community dances, church services and recreational facilities.
24
II. Recommendations Regarding Playing/Recreating
1. ILS training programs need to teach consumers how to find out what activities are
available, where they are happening and how to get there. The following were
recommended areas for training: saving money, looking up information and scheduling
transportation.
2. Mobility training needs to be funded for leisure purposes as well as for work.
3. Funding needs to be made available to pay attendants to assist people with disabilities in
their participation in social activities.
4. Consumers need to set up a system in their place of residence to go out in smaller groups
and with people they choose.
5. Transportation needs to be available which does not limit the number of rides a person
can take. Also consumers need to get involved (attend meetings, serve on boards) with
their local transit commissions and inform them of their needs.
Judy Heumann (left) of the World Institute on Disability with Alana Theriault,
both Small Group Leaders at the Oakland Quality of Life Conference
Photograph by Dick Stein
25
Participants, San Diego Quality of Life Conference
Photograph by Leslie Bryant
5
Conclusion
The most basic form of empowerment is to listen to a person and to take what they have to say
seriously. The success of this project illustrates the strength of incorporating this empowerment tool
in how we relate to persons with developmental disabilities. During WID's Quality of Life
Conferences, persons with disabilities were listened to as participants: they were invited to give
keynote addresses; and they made up the overwhelming majority of participants at each conference.
Because of this approach, we are confident in the reliability of the data included in this report.
People with developmental disabilities share a very strong desire to become more involved in
their communities at every conceivable level. They want to live more independently, to be
perceived and treated as adults, and to have meaningful and well-paying employment. They want
to have choices; they want to travel; they want to participate. They want to develop relationships
with others and want to establish their own families.
These recommendations and ideals regarding quality of life for persons with developmental
disabilities reflect back upon David Goode's four principles. (See page 3.) People with disabilities
want the same things as everyone else: they want the support of their families and the their
community in achieving the goals that they have defined for themselves, and they want to assess for
themselves what gives quality to their lives.
WID has been enriched by the receipt of this grant in far more significant ways than mere
funding. We have been part of a process that has led people with disabilities to speak more clearly
and to define for themselves what is important. This has helped us as an organization to define what
is important for ourselves as well. People with developmental disabilities have had others speak for
them, about them, and for their own good for a very long time. When they speak for themselves,
their ideas are cogent, understandable, and clear. The challenge is for policy makers and others who
influence their lives to listen.
27
Reference:
Discussing Quality of Life (QOL): Framework and Findings of the Work Group on QOL for Persons
with Disabilities. Draft Report by Dr. David Goode.
28
Appendix A
Project Overview
The World Institute on Disability is being funded by the Administration on Developmental
Disabilities to conduct a project on Quality of Life issues for persons with developmental
disabilities. The project builds upon the findings and methods of the National QOL Project funded
by the ADD in 1987-88 and developed by Dr. David Goode.
The California Quality of Life Project will hold a series of conferences throughout California to
develop a Statewide Strategy for Enhancing the Quality of Life of persons with Disabilities and
their families.
The primary goals of the Conferences are:
1. To enable consumers to identify for themselves the issues that are significant in their
daily lives.
2. To create a data base on Quality of Life issues as defined by primary and secondary
consumers.
3. To use this data base in order to impact social policy, legislation, research, training and
the provision of community services in the area of disability.
4. To enhance consumer self advocacy through participation in the conference process.
5. To establish a statewide network of primary and secondary consumers that can
influence social policy on issues which affect their lives.
6. To produce a final report which will express consumers views on "what makes for
Quality of Life."
Currently six conferences are planned between May and October of this year. To date
conference locations are the Bay Area, Sacramento, Los Angeles and San Diego regions.
Approximately 40 to 50 participants will attend each conference; the majority of which will be
primary consumers. Also attending will be parents, family members and advocates in each region.
The California Quality of Life Project is being directed by Deborah Kaplan and coordinated
by Valerie Vivona of the World Institute on disability. W.I.D. staff are working closely with a
statewide advisory committee of consumers, representatives of the California Developmental
Disabilities council, the Organization of Area boards, People First Self Advocacy Groups and other
persons involved in the disability community. Advisory committee members will be at work in
their local regions to insure maximum participation of consumers.
At the projects end a final report will be disseminated to policymakers, planners, service
providers, advocates and consumers, so that they can use our experiences to further the QOL
agenda at the state level and nationally.
29
Appendix B
Flyer
@ @ @ p @ @ @
Speak Out and Be Heard
on Living, Loving, Working, Playing
World Institute on Disability
cosponsored by the Oakland Unitarian Church
Invites you to attend a one day conference
Date: Wednesday, June 7, 1989
Time: 9:00 a.m. to 4:30 p.m.
Place: Henry J. Kaiser Center ballroom
10 Tenth Street, Oakland
2 blocks from Lake Merritt BART
Come and share your thoughts and
ideas about the past, present
and future.
Lunch will be served
Please complete and return the attached form
30
Appendix c
Registration Form
Return to:
World Institute on Disability
1720 Oregon Street, Suite 4
Berkeley, CA 94703
Registration Form
Name:
Address:
Phone:
Please check and comment:
Do you need an attendant to assist with:
Bathroom
Eating
Mobility
Do you need assistance arranging transportation to and from the conference:
Yes
No
If "Yes," what type of assistance:
Do you need a sign language interpreter?:
Yes
No
Any other assistance?:
Workshop Selection:
Which Two of the Four Workshops would you like to participate in? Please check two:
How We Live
How We Love
How We Work
How We Play
31
Appendix D
Conference Agenda
Sample Agenda
Conference 1
9:00-9:30
Registration and Coffee
Participants arrive and pick up name tag at the registration desk. Participants
had already been assigned to the two workshops of their choice. Workshops
were color coded: the colored dot at the top of the participant's name tag
indicated the workshop that person would be attending in the morning; the
colored dot at the bottom of the participant's name tag indicated the workshop
that person would be in during the afternoon. At this time participants also
picked up an agenda for the day and were asked if they were interested in being
on a mailing list with other conference participants. Coffee and donuts were
available at this time.
9:30-10:00
Welcome and Introductions
Valerie Vivona, Project Coordinator - World Institute on Disability
Panel introduces themselves:
Deborah Kaplan, Project Director - World Institute on disability
Larry F. Rice - People First.
A brief description of the QOL Project and purpose of today's conference is
given. Attendants are introduced. All participants (including support staff
and workshop facilitators are asked to say their names and where they are from.
10:00-10:15
Past, Present, and Future
(Larry F. Rice gave this talk at the Oakland conference. You will need to
identify a self advocate in your region to be part of the panel).
Larry F. Rice spoke about his past and present experiences, the importance of
self advocacy and his goals for the future both personally and in terms of the
self advocacy movement.
10:15-10:45
Group Discussion on Past, Present, and Future
Deborah Kaplan and Larry F. Rice
Deborah leads discussion asking participants to talk briefly about their past
experiences in relation to the four small group topic areas (Living, Loving,
Working, Playing). Hanging up in the front of the room are four pieces of
butcher block paper (for example - a comment about wanting to live with a
roommate would be recorded on the paper titled Living). The process
32
continues as participants talk about their present day lives and future goals.
When the discussion is ended each sheet of comments is distributed to the
corresponding workshop and hung on the wall to provide a starting point for
the workshop discussion.
11:00-12:15
Workshop Session #1
Please refer to the Small Group Process Instruction Sheet
12:15-12:30
Feedback
Morning workshop reports are given. (Please see Small Group Process
Instructions.)
Lunch - 12:15-1:15
1:45-3:00
Workshop Session #2
Same process as above
3:00-3:15
Feedback
Afternoon workshop reports are given
3:15-3:45
Evaluations
Evaluation forms are passed out at this time attendats and other support staff
assist participants in filling out the evaluations and all forms are returned to
the panel. Future Conference forms are also filled out and returned at this
time. (Please refer to sample forms in packet.)
3:45-4:00
Ending Remarks
Self Advocate (Larry F. Rice) panel member thanks participants for coming to
the conference and speaks to the need for continued self advocacy. (May wish
to mention local self advocacy groups that are available.)
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Appendix E
Small Group Primary Purposes
and Process Instructions
Primary Purposes
Gather information on Quality of Life for Persons with Developmental Disabilities.
To share common experiences related to Quality of Life.
To assist participants to identify specific objectives they can accomplish to achieve
Quality of Life goals.
Small Group Process Instructions
Preliminary Matters
Explain Process for Small Groups
Explain role of Notetakers and Notetaking Process:
1. Small group participant says idea.
2. One of the group leaders summarizes idea.
3. Participant agrees to summary or changes it.
4. Notetaker writes it down.
Select person from small group to help notetaker to hang up pages.
Select person from small group to report back to large group on goals and actions
from the small group.
Process:
Go over brainstorming list.
Add to list.
Leader to identify most common issue - ask for group's consent
Discussion of the issue:
1. What barriers exist that keep you from achieving this goal?
2. What actions can you take to eliminate those barriers?
3. What resources do you need to take these actions?
Repeat the format with other issues (time permitting)
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Example: Play
Issue I must rely on my parents to go out and visit my friends.
Goal: I want to be able to visit my friends independently.
Actions:
Apply for paratransit vouchers/or disability transit ID
Get information on local groups of disabled people fighting for
accessible transportation.
Write letter to transportation commission
Resources:
Information (Ask friends, teachers, advocates)
Assistance with calling or writing (Ask friends, teachers, advocates)
Support from friends and family
Final Task:
Select a participant in the workshop to report back to the large group
on the "main issue" you discussed. Group coaches the reporter on what
to say.
Facilitator may wish to accompany report.
Time = 5 minutes per person
Reports will be given after both A.M. workshops and P.M. workshops.
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Appendix F
Questionnaire: Quality of Life Conferences
Would you tell us about yourself so we can have an idea of who came to the conference?
Please do not put your name on this sheet.
1. How old are you?
2. Marital status
a. Married
b. Widowed or divorced
c.
Do you live with a girlfriend or boyfriend?
d. Single
3. Do you have any children?
Yes
No
4. What type of place do you live in?
a. In home or apartment by myself
b. Shared home or apartment with roommate
C.
With parents
d. Group home
e. Institution/Nursing home
5. How do you get to places you want to go? (You can check more than one.)
a. Own car or van
b. Friends or relatives take me
C. Public transportation
d. Walk
e. Taxi
f. Other
6. What kind of a school did you go to?
a. Special education
b. Regular education
7. Where do you work?
a. Competitive employment in a regular job setting
b. Supported imployment
C. Sheltered workshop
d. Day program
e. Other
f.
I don't work
8. What city or town do you live in?
9. What's your ethnic background?
a.
African American
b. Latin
C. Asian/Pacific
d. White
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Evaluation: Quality of Life Conference
Yes
No
Comments
Did you enjoy the conference today?
Did you like the topics selected?
What other things would you have
liked to talk about?
Did you have the opportunity
to say what was on your mind?
Is there anything that would
have made you more comfortable?
Did you have enough help:
Eating
Using the bathroom
Getting around
Any other kinds of
help you needed?
What was the best part of the day?
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Evaluation: Future Conferences
1. Would you be interested in attending another conference like this one?
Yes
No
Comments
2. If so, would you be willing to help plan the conference?
Yes
No
Comments
3. Do you have friends that might be interested in attending a conference like today's?
Yes
No
Comments
Your name:
Your Phone Number:
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Appendix G
Speeches
Larry F. Rice
Oakland Quality of Life Conference, June 7, 1989
(Extracted from Conference Video)
Many of you may have heard of self advocacy. Well in 1979 I met Bob, a dear friend of
mine who has cerebral palsy, and he taught me about self advocacy. Bob knew about the
problems I was having in my life and he told me I could make something of myself. I was helping
myself. This made sense to me and I began to start self advocacy groups. I learned how to serve
on boards and committees and to understand people like myself.
I have some goals for the future. I would like to see a teenagers' People First, SO that teenagers can
choose for themselves the kind of activities they would like to be involved in, the kind of training
they would like to have and even the kind of clothes they wear. People First would teach them to
speak for themselves instead of having social workers, doctors and teachers speak for them. They
could also do things together like calling each other on the phone and going out to movies.
Also, I would like to see more people with disabilities live independently. The centers for
independent living can help us do that. Some day I would like to take a group of people with
disabilities and have them come live with me so I could teach them to live independently. We
also need to use computers, in the future to help us at work and at home.
Mostly, I would like to see us work together as a family and get away from those old models of the
60's, 70's, and 80's. Now it's the 90's and social workers, doctors, and teachers need to listen to us
and to what we want.
Colleen Bryant
San Jose Quality of Life Conference, September 26, 1989
Hi. My name is Colleen Bryant and
I
am here today to talk about my past, present and future
about Living, Loving, Working, and Playing.
Past
When I was living at home, the thing I thought was hard was sharing a room. I kept my things
organized; my sister was not. There were things that my sister did that I couldn't do, like going out
nights. Most of my friends lived far away because I went to different schools. My sister could drive
and I'couldn't. I wanted to hang out with my sisters.
What was easy about living at home was that my sisters were always there to help me. We all help
each other, like with hair, makeup, and clothes. Because I was home a lot, I had a very close
relationship with my grandmother. We spend more time together. Living with my family taught me
how to be brave and stick up for myself.
In the past I didn't think I would have a relationship with a guy because of my disability.
In the past working at Hope Mountain View my dislikes were making less money, having the
39
supervisor correct my mistakes, and asking to use the restrooms. The only thing I thought was easy
was I had a very good friendship with my supervisor.
In my- past it was hard to make new friends.
Present
In my present I lived at Greater Opportunity where having roommates is still not easy.
Moving out of my parents' house was a bit scary at first. I was not sure if they would like me or if
I would like them.
What was easy that I liked was being on my own; no one telling me what to do - like ordering
what to do; having more responsibilities for myself, like grocery shopping and making my own
appointments. Living at Cortez, the thing I disliked was learning to live with roommates - that was
hard sometimes. The things I liked were a nicer area, easy to get on buses, and more privacy, having
close family and good friends, visiting my grandmother, going to visit my sister in San Diego, and being
with my boyfriend. What I dislike about the job is working on weekends, working at Motel 6 cleaning
rooms. The thing I like is helping Sheryl my boss with the other clients, more restaurants and shops.
Loving in a relationship was hard: honesty, trust, sharing like sharing easy. Other feeling being
apart like going on a big vacation, breaking up, like not seeing each other again, arguing like having
miscommunication.
Future
In conclusion, in the future I hope to be living on my own in my own apartment taking
responsibilities for my own life.
Having a stronger relationship, trying other new jobs like working with disability kids or adults,
helping them learn how to read and write except for a paying job. I want to find more time for playing.
To enjoy life.
It would be hard to get places because I don't drive.
My future is going to be like making decisions and commitments as my long range goals. Having
the ability and the understanding to do things that some handicapped people are afraid to try.
Thank you and enjoy your day.
Cheryl Crowe
San Bernardino Quality of Life Conference, October 6, 1989
(This speech was read for Ms. Crowe at the conference. She was unable to deliver it personally
due to illness.)
Hi. My name is Cheryl Crowe and I am a clerk assistant at Pomona Valley Workshop. And
I would like to talk about three different subjects:
1) Self-confidence
2) Self-control, and
3) Your rights
I myself had to learn all three of these things.
When I was younger, I got into alcohol and drugs real bad. I used to blame my Dad because
he used to give it to me, and I used to blame my good friends. But the friends that I did hang around
with, they used to help me get the alcohol and the drugs. I was really going down-hill. I didn't gave
no self-confidence, no self-control, and did not care about anyone's rights.
40
I got into a deep depression. It was like more I got into alcohol and drugs, more deeper of a
depression I got in. There were a lot of times I came close to death. But my depression got SO bad that
my Sis took me to the hospital because I got SO depressed, I took an overdose of sleeping pills.
I was in the hospital for a month. And a person from Regional Center came out and told me
that he knew a place in Upland, SO he took me to see it, and I told him that I would take it just to get
out of hospital.
So I moved. And a couple weeks later, I ran away to Las Vegas still thinking that no one cared.
I spent all my money. And finally my friend talked to me about going back home, so I did and boy,
my care provider was mad at me. At the one time I felt that she cared. She could kick me out because
I had no money to pay the rent, but she didn't.
I lived there for seven years. Over the years things changed when new staff people came and
I felt no one didn't care. So I told my social worker I wanted to move, SO I did. I found a place that
people do care, like my new care providers, Pam and Stan Roberts, and also my newest boyfriend,
Eugene Hagendon. They are there when I need to talk, and they listen.
So you can find people that do care. You got to look for them. They all have to give me a little
push when I don't feel like I can do it. All three of these people give me the confidence to say, "Yes,
you can. You can do it. Just take your time on it." And I do it. Might be slow on it, but you get it
done.
When I got this job at Pomona Valley Workshop, I was working on the assembly line, and I
worked on the line about two years. And all that time I felt like I wanted more in life than working
on assembly line all my life. I talked to my case manager about a different job. It took her a while.
I would ask her every day. Then finally my case manager, social worker, and I had a meeting. And
I told my social worker that I wanted a different job. She asked me what I wanted to do. I said office
work. A couple of weeks later, my case manager asked me do I want to work part-time in the Rehab
office. I said, "Ya."
So when an opportunity come along, you take it and prove to yourself and to them that you
can do it.
A year ago I had an opportunity to work in the community, a place called "Treats." They made
all different kinds of muffins. It was in the mall. I thought: "Wow the mall, more money, shopping,
and discounts." The job was fun for a while. I was learning how to cook different kinds of muffins.
But things got rough. My co-worker was making me do most of the work. They were saying I was too
slow. And I said if I have the help like most do.
I got sick of it and I quit and came back to Pomona Valley Workshop. But I know I had an
opportunity and I took it and gave it a try. And all you have to do is try. If you fall off the horse you
get right back on and try again. I like what I'm doing now. I have learned a lot since I been here: self-
confidence, responsibilities, and self-control.
Thanks to people Lou Marchio, Roberta Eisel, Peggy Harrington, Faye Moore, and Peggy
Margaret. Now those are the people who care. I also learn more skills like using copying machine,
answering phones, typing, filing, and using the cash register.
Justsay I am human. I can do anything I want ifI have self-confidence, self-control, learn about
my rights. Just listen to social worker and do what you can in your IPP. And if you need help, don't
be afraid to ask. Just remember three things: self-confidence, self-control, and your rights. And
remember there are people that do care.
Thank you.
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Mike Hansen
San Diego Quality of Life Conference, October 14, 1989
I would like to welcome everyone to this Quality of Life Conference sponsored by Area Board
Thirteen and the World Institute on Disability. My name is Mike Hansen and I am happy to see SO
many of you here!
Many of you may be wondering why this conference is important? This conference gives
consumers an opportunity to speak out and be heard. Today it is our turn to do the talking and the
professionals to do the listening.
Like many of you, I have been involved in self-advocacy over the past two years. I first became
interested in self-advocacy when Nancy Ward, a consumer from Nebraska, came to San Diego to talk
about getting self-advocacy groups started. We then organized self-advocacy groups and I've been part
of a group for the past two years. We also have a regional self-advocacy group called Council People
First of San Diego. I am the president for this group. Because of self-advocacy I have learned to speak
out for my rights and my wishes. I would like to explain to you what self-advocacy is.
Speaking for ourselves: An example of this is speaking out at your IPP meeting instead of
letting the professionals do the talking.
Solving problems and making decisions: An example of this might be deciding to live in
a studio apartment rather than share an apartment and deal with roommate problems.
Knowing rights and responsibilities: An example of this is knowing you have a right to live
where you want and if you live in a group home you have the right to open your own mail
and to receive all calls without restrictions.
Contributing to the community. Examples of this are having a job, volunteering your time
to help others, paying taxes and voting.
Although I've learned to speak out for myself, there was a time in my life when professionals
made all of my decisions for me. I have lived in a state hospital and several group homes where my
wishes were not heard. When I lived at Camarillo I wanted to visit with my Mom and the staff said
no. They also said I could not call her. My visitation rights were taken away. Then I was transferred
to a group home in Long Beach for People with Prader Willi Syndrome. This was not my problem and
I became very ill because they put me on a diet. Finally, I decided to get out of the group home SO I
left and came to San Diego. Now I live independently and have for seven years. I have been successful
because of professionals who were willing to work with me, not for me. They helped me in decision-
making money management, health concerns, organizational skills, cooking and housekeeping. In
other words, they helped me learn these things - they did not do them for me. I enjoy living
independently because I can do what I want as long as I meet my obligations and responsibilities.
One of the most important things professionals have helped me with is work. Work is very
important to me. I have held a number of different jobs such as a popcorn popper at movie theatre,
a hotel maid, and in a arc workshop. Now I work as a courtesy clerk at Vons. I have worked at Vons
for four months. Because of my hard work and the support of some professionals, I am happy with my
job.
I have talked about the past and the present and now I would like to talk about the future.
One thing we should all think about are our goals and dreams for the future. We need goals
for ourselves, as well as goals for all persons with developmental disabilities. For myself, I dream of
being a supervisor at Vons, owning a condo, having a credit card and traveling. My dream for persons
with developmental disabilities is that one day we all will be able to speak for ourselves, be ourselves,
live where we want and work in the community.
So please speak out in your small groups today. Think about your dreams for the future. This
is your chance to be heard. And let's have a good time in our workshops.
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About the
World Institute on Disability
"Our work proceeds from a basic belief that
persons with disabilities have the same desires and
needs as anyone else. The quality of my life is
related to how free I am to make my own choices."
- Ed Roberts
The World Institute on Disability is a public policy center that is run by persons with
disabilities. 42 million people in this country have a disability. These disabilities may be acquired
at birth or as a result of injury or illness. Some of us use a wheelchair or cane, or have another readily
visible disability. Other disabilities are less apparent, such as mental disabilities and hearing
impairments. Despite these differences, we have many things in common. Among the most
important - and distressing - similarities is the fact that we are all handicapped by society. We
live in a society that, on the one hand, tries to ignore the existence of disability, and on the other,
sees disability as more limiting and tragic than it actually is. We call this attitude "Handicappism."
The World Institute on Disability has been established to combat "handicappism". Our goal is to
use research, public education, training and model program development as means to create a more
accessible and supportive society for all people - disabled and nondisabled alike.
Partial Listing of WID's Projects
Policy Research and Analysis
Personal Assistance Services
Access To Health Care
Training and Public Education
Making Public Transit More Accessible
Making Public Transit More Accessible
Developing Employment Opportunities
Partners in Policymaking
Quality-Of-Life Issues
The Future For Independent Living Centers
Telecommunications and Disability
International Affairs
43
Board of Directors
Andrew McGuire (Chair)
Executive Director
The Trauma Foundation
San Francisco, CA
Bruce Alan Kiernan
Director of Development
Union Theological Seminary
New York, NY
Charles La Follette
San Francisco, CA
Philip R. Lee, M.D.
Professor of Social Medicine
Institute for Health Policy Studies
San Francisco, CA
Russell E. O'Connell
President, Organization Development Services, Inc.
Duxbury, MA
Irving Kenneth Zola, Ph.D.
Professor of Sociology
Brandeis University, Waltham, MA
Edward V. Roberts
President, WID
Judith E. Heumann
Vice President, WID
Joan Leon
Vice President, WID
44