Speak Up Guide
Speak Up Guide
Speak Up Guide
The Speak Up! Slide Show can be used to help present information in the
Speak Up Guide. Training scripts for two activities in each chapter are also
provided on this CD-ROM, to assist self-advocates in providing and leading their
own training groups. The training scripts can also be used to accompany the
Slide Show. Additional role plays for most chapters have also been developed
and can be used to supplement the role plays in the Slide Show.
1: Knowing Yourself
Published by:
STIR Steps Toward Independence and Responsibility
and
Shifting the Power,
projects of the
Clinical Center for the Study of Development and Learning, UNC-CH
For further information please call Rebekah Pennell at (919) 966-5171.
6-7
10
11-12
List of Skills
13
Challenges Activity
14
15
16-17
18
19-22
23
24
25
My Disability
What Do You Know About Your Disability? Activity
26
27
28-29
30
31
How I Learn
C.I.T.E. Learning Styles Instrument
32-35
36-37
38
39
My Healthcare
Are You Ready to Manage Your Own Health Care? Activity
40
41
42-46
Being Independent
Independence Activity A
47
Independence Activity B
47
Independence Activity C
48
Choices Activity
49
50
Respect Activity
51
52
My Future
Lifestyle Activity A
53
Lifestyle Activity B
53
Job Activity A
54
Personal Profile
55
Date: ___________________
Directions: Write a next to the activities that you like. Write an X next to the
activities that you do not like.
= Right On!
___Camping
___Hiking
___Horseback Riding
___Swimming
___Walking
___Jogging
___Riding Bicycles
___Golfing
___Tennis
___Baseball
___Football
___Soccer
___Hockey
___Fishing
___Car Racing
___Having Pets
___Going to Church
___Babysitting
X = No way!
___Baking
___Cooking: __________
___Ice Skating
___Roller Skating
___Gymnastics
___Chess/Checkers
___Playing Cards
___Collecting Things (stamps, coins, dolls)
___Sewing
___Painting
___Pottery
___Gardening
___Watching TV/Movies
___Singing
___Dancing
___Writing stories/songs/poems
___Visiting with friends
___Hair Care and Make-up
Created by STIR (Steps Toward Independence and Responsibility) and the Self-Determination Resource Center, Center
for Development and Learning, CB#7255, University of North Carolina, Chapel Hill, NC 27599
LEISURE ACTIVITIES
Activity A:
Activity B:
Activity C:
Activity D:
Activities A through J were developed by John Dattilo, University of Georgia, and Susan St. Peters, Pennsylvania State University. They were
taken from a manuscript titled "A Model for Including Leisure Education in Transition Services for Young Adults with Mental Retardation, and
are expanded upon in the book Leisure Education Program Planning: A Systematic Approach.
PERSONAL STRENGTHS
_______ Im energetic.
_______ Im a good listener.
_______ Im polite.
_______ Im honest.
_______ Im hard-working.
_______ Im usually on time.
_______ Im serious.
_______ Im generous.
_______ Im proud of myself.
_______ I can keep a secret.
_______ Im a good friend.
_______ Im a good student.
_______ Im musical.
_______ Im artistic.
_______ Im creative.
_______ Im good with words.
_______ I can get to the heart of
things.
_______ Im good with my hands.
Reprinted with permission from Speak Up for Yourself and Your Future!, Department of Special Education, University of Vermont.
10
STRENGTHS
Mental Abilities
Writing
Reading
Mathematics
Foreign language skills
Problem solving
Complex thinking (ability to see a
situation from many perspectives; to
see the shades of gray between
black and white)
Abstract thinking (ability to see
patterns and relationships; to see
broad, overarching categories)
Planning
Understanding
Teaching
Computer skills
Memory
Other
Abilities in Specific Sports (with or
Without wheelchair or assistive device)
Basketball
Baseball
Football
Tennis
Swimming
Track and field
Weight lifting
Aerobics
Dancing
Rugby
Lacrosse
Skiing (Downhill/Cross country)
Kayaking
Sailing
Fishing
Volleyball
Racquetball
Hiking
Mountain climbing
Flying a plane
Riflery
Archery
Other
Personal Qualities
Honest
Dependable
Sense of humor
Caring
Thoughtful
Responsible
Charitable
Gentle
Kind
Self-confident
Accepting of others
Organized
Patient
Even-tempered
Fun to be with
Up-beat personality
Other
STRENGTHS (continued)
11
Interpersonal Abilities
Listening to others
Sharing feelings with others
Standing up for yourself
Seeing where help is needed
Putting others at ease
Tactfulness
Persuasiveness
Comforting others
Giving your time
Giving your talent
Giving your money
Other
Reprinted from Taking Charge: Teenagers Talk about Life and Physical Disabilities, by Kay Harris Kriegsman, Elinor L. Zaslow, &
Jennifer D/Zmura-Rechsteiner. Copyright 1992 by Woodbine House. Reprinted by permission of Woodbine House, Inc. Publishers.
12
SKILLS
______ Reading
______ Writing
______ Math
______ Science
______ Social studies
______ Art
______ Sports
______ Music
______ Teaching
______ Babysitting
______ Cooking
______ Sewing or knitting
______ Cleaning
______ Hairdressing
______ Driving
______ Farming
Reprinted with permission from Speak Up for Yourself and Your Future!, Department of Special Education, University of Vermont.
13
CHALLENGES
Social
Relating to others
Being at ease with others
Introducing yourself and others
Making others feel welcome
Making others feel comfortable
Carrying on a conversation
Listening to others
Helping others
Sharing feelings
Being dependable
Standing up for yourself
Taking on responsibility
Seeing others viewpoints
Asking for help when necessary
Other
Physical
Watching weight
Exercising
Strengthening
Keeping in shape
Not over-doing
Personal hygiene
Healthy diet
Sticking to medical
schedule (injections,
pills if needed)
Other
Personal Development
Reprinted from Taking Charge: Teenagers Talk about Life and Physical Disabilities, by Kay Harris Kriegman, Elinor L. Zaslow, &
Jennifer DZmura-Rechsteiner. Copyright 1992 by Woodbine House. Reprinted by permission of Woodbine House, Inc., Publishers.
14
2.
3.
4.
If an employer were to ask me the following question, how do you think I
should answer? --- Why should I hire you?
15
Everyone deals with problems and challenges in different ways. The following
Ways. The following activity will give students an opportunity to look at a variety
of solutions to the same problem.
Ask students to consider the following scene and answer the questions.
You are being sent to live on a deserted island for one week.
1. What things would you need to take with you in order to survive on the island?
2. What things would you want to take to entertain yourself?
3. What would you take to make you feel safe?
Set up the scenario, making up a description of the island. Give students examples of
things in each category (survival needs, entertainment, safety and security); i.e., water,
a portable radio, best friend. They may choose to bring a person with them.
When students have completed their lists, have them take turns sharing the items they
identified. List their responses on the board in the three categories. If an item is listed
by more than one student, put a check mark after the items each time it is mentioned.
When all answers are shared, discuss the areas that were identified that were common
to everyone and those that are unique needs to individual students. Make a point that
we all have common needs but we also have needs that are unique to us as individuals.
Activity B:
Review the personal limitations listed on the Challenges worksheet. These include:
Social Abilities: the need to learn to respond to others more freely, to extend a hand
first, to relate to others more positively.
Physical Abilities: the need to improve or develop new strengths or skills in your
body.
Personal Development: the need to improve your personality and attitude toward
yourself and others.
OK where I am: the feeling that there is no great need or urge to change.
Instruct students to identify their challenges or weaknesses. Have students place a
blue mark next to the abilities they need to work on.
If they have trouble figuring this out, have students talk to someone with whom they are
comfortable. Make sure the student really wants to know what they need to work on.
Have them assure the person they talk to that their feelings wont be hurt if he or she is
honest.
16
Activity C: Tell students that you understand that it is not easy for them to talk about their disability;
but, in order for the Americans With Disabilities Act to work, they may need to be able to
tell an employer about their disability in a way that the employer will understand. The
employer will not be interested in the name of the disability necessarily, but will want to
know where it might cause problems on the job and what a persons needs are to be
successful on the job.
(Note: No one has to tell an employer he/she has a disability by law. However, how
can you talk about the accommodations needed without disclosing the disability?)
Have students write a paragraph about themselves that answers the following
questions:
1. How do my disabilities or weaknesses challenge me?
2. Does it cause problems in my life (at home, at school)?
3. In which major life activities might it cause problems for me?
Activity D:
Ask students if there is a relationship between their strengths and challenges. For
example, is a particular weak point preventing them from making the most of a strong
point?
Case in point:
Edward, for instance says his strengths are caring, being nice, and having a good
personality. His weakness, he says, is that he is not outgoing and doesnt talk much to
others.
Problem!
Idea!
Activity E: Facilitate a discussion of how students cope with their disabilities or weaknesses. Ask
each student to give an example of something he/she does to compensate. Ask them
to share their strategies with the class. Help them to see that they all have many
strategies that they use each day to compensate or to work around the difficulties that
their disabilities present.
Activities A, C, & E were taken from A Students Guide to the American with Disabilities Act, Hospital Industries Program,
Department of Rehabilitation Medicine at Maine Medical Center, Portland, Maine. Activities B & D were taken from the book Taking
Charge: Teenagers Talk about Life and Physical Disabilities, by Kay Harris Kreigsman, Elinor L. Zaslow, & Jennifer DZmuraRechsteiner. Copyright 1992 by Woodbine House. Reprinted by permission of Woodbine House, Inc., Publishers.
17
Students will identify those people, places, and activities that contribute to
their sense of belonging and a feeling of continuity.
18
Inspiration for activities A and B and the materials used in them came from the article titled Who Chooses? by Bill Mitchell. Materials used in
Activity C were adapted from Personal Futures Planning Process developed by Dr. Beth Mount.
WHO CHOOSES?
By Bill Mitchell
Parents are a strong, stabilizing force in a childs life and play an important role in
helping the child develop self-confidence and a sense of independence. Parents of a
child with disabilities typically want to protect the child, an instinct based primarily but
not exclusively on a realistic knowledge of the childs limitations.
In this article that follows, the author discusses the need for young people with
disabilities to be involved, as much as possible, in making decisions that affect their lives.
He also discusses ways in which families affect their childs ability to take risks, make
decisions, and live with the consequences.
Bill Mitchell works in the Governmental Affairs Office of the Association for
Retarded Citizens (ARC) in Washington, D.C. Currently, he is involved in a project
funded by the Department of Housing and Urban Development to provide technical
assistance in the finance and design of housing for people with disabilities.
He came to Washington on a fellowship with the National Council on the
Handicapped, during which time he wrote a paper on developing leadership in the
disability rights movement.
Mr. Mitchell grew up in Atlanta, Georgia, where he attended public schools. He
later graduated from Georgia State University with a Bachelors degree in Philosophy.
Before coming to Washington, he worked as a counselor for students with disabilities at
Georgia State University and as the staff advocate for the Georgia Advocacy Office.
Mr. Mitchell has mobility impairment.
The importance of receiving the message that those who are care
about you have faith in your ability not only to succeed, but also to survive
failure, cannot be overstated.
Historically, people with disabilities, both individually and in groups, have had few
opportunities to exercise choices in their lives. In his book, From Good Will to Civil
Rights: Transforming Federal Disability Policy (1984), Richard Scotch observes that
disabled people generally have not spoken for themselves, and public policies have
typically dealt with their needs in ways shaped by stereotypes of dependency.
The lack of involvement of people with disabilities in decision-making at the
policy level has its roots in the lack of participation in decision-making at the individual
level. Decisions affecting people with disabilities have frequently been made by others.
Those disabled early in life have gone from having parents make decisions for them to
having doctors, social workers, or rehabilitation counselors make decisions for them.
19
Those raised in segregated facilities have found their chances of making their own
decisions restricted even further. No wonder then, that when confronted repeatedly with
the message that they must learn to take responsibility, many people with disabilities
feel confused and unprepared.
What are the barriers to exercising choices? Based on my observations and
experiences with other people with disabilities, I have identified three barriers that I
believe restrict opportunities for young people with disabilities to learn to make their own
decisions:
1. Overprotection
Ironically, those who care most about individuals with disabilities may be among
the obstacles to their gaining the experiences necessary to exert more control over their
lives. Typically, most parents, but particularly parents of children with disabilities, feel
the need to protect their children from the pain of failure and rejection. Yet, as they
mature, children will be exposed to situations that require them to make choices and
abide by the consequences.
As part of growing up, youngsters will be out in their environment hanging out
with the neighborhood kids, exploring the woods beyond the back yard, or stopping at
the corner store on the way home from school out from under the watchful eye of a
parent or other authority figure. It is during these times that children begin to learn more
about their own capabilities and limitations and to feel a sense of autonomy.
In some cases, the combined effect of parental concern and environmental
barriers may lead to a situation in which a child with a disability is never out of the house
unless in the presence of a parent or another adult. The natural tendency of parents to
protect their children is reinforced by the reality of the difficulties present in the
immediate environment. Parents of children with disabilities often do not have a basis
of comparison for determining what are acceptable versus unacceptable risks in the
environment, and consequently may lack the reassurance needed to be able to allow
their children their own space to find their way in the world.
In my own experience as a child having mobility impairment and using a
wheelchair, I got out a lot, explored my surroundings, and played with the neighborhood
kids. These unsupervised experiences were among the most important in my life. I
learned about relationships and about taking responsibility for my own actions, and
generally broadened my perceptions of the world around me and how I fit into it.
Compare my experience to those of a child in a residential facility. One situation
reflects the society we live in the real world; the other reflects a society limited by
restrictions that skew the childs perception of the world. When I consider my
experiences of growing up in my own community and attending a neighborhood school
where I had the same restrictions as other children, and then compare them to the
experiences of acquaintances who have spent a significant part of their lives in
residential facilities, it is not hard to account for the uncertainty many of them feel when
confronted with challenges and opportunities.
20
21
The lack of basic support systems to help one cope with failure can be
particularly difficult for persons with disabilities. Discontinuity in some of the basic
necessities of life, such as home, community, or friends, especially during the formative
years, can add an additional barrier to the disabled persons freedom to make
autonomous choices. In some cases, the persons need for security and safety in the
environment may outweigh the benefits of assuming a new role in the community or
taking on a new job that might further his or her career. While it may seem
contradictory to the earlier point about overprotection, having a sense of belonging and
a feeling of continuity in your environment is an important element in being able to
challenge your capabilities. To be comfortable in taking risks, it helps to know that
youve got a place to come home to after its all over.
For parents this means trying to provide stability and security for your children
with disabilities to the greatest extent possible, while also giving them the freedom to
explore. I believe that young adults with disabilities who are beginning to cope with
increasing responsibilities and who are feeling overwhelmed by their choices can ease
their anxiety by looking for small ways to bring stability to their world. For example, I
love Mexican food, so at least once a week, even if the walls are crumbling around me, I
go to the same familiar restaurant where they know me by name and always seem glad
to see me. A small detail, perhaps, but it helps me gain perspective when other things
are in flux. No matter how unstable an individuals circumstances may be, being able to
find even one small island of calm that provides an anchor can do wonders for ones
sense of stability.
I have listed three basic obstacles that young people with disabilities face as they
strive to become adults with the confidence in their own capabilities necessary for
exercising self-determination. All three barriers have the potential to limit opportunities
in make choices. Parents can help their children to overcome these barriers by
providing as many opportunities as possible that allow their children to take prudent
risks and make decisions independently.
As I see it, there are two challenges to be addressed:
How to expose children with disabilities to more opportunities to make choices for
themselves
and to deal with the consequences of their choices; and
How to support and encourage young adults with disabilities as they explore their
capabilities
and options.
The answers that parents and other caregivers come up with today to these questions
will determine the degree to which the next generation of young adults with disabilities is
prepared to meet the challenges of a changing world.
22
Who are the people that help make you feel welcome, safe, part of the gang?
What are the environments that give you a sense of belonging and feelings of
continuity?
What are the types of things you like to do in these environments?
People
Place
Activity
23
PEOPLE MAP
Name: _______________________
Date:__________________________
1. Divide the map into sectors for the Family, Service Providers (Staff),
Friends, and Others.
2. Who are the people who are most important in this persons life? Put the
most important people closest to the Focus Person (student).
3. Write down how often each person has contact with the Focus Person
(student).
4. Indicate in green and/or plus signs who is most effective and/or has close
ties with the Focus Person (student).
STAFF
Community
Family
Friends
This activity is part of the Personal Futures Planning Process developed by Dr. Beth Mount and was adapted from a mini-handbook on
Personal Futures Planning written by Dr. Joe Patterson.
24
Dreams
Needs
People
Activities
Things
Reprinted with permission from Speak Up for Yourself and Your Future!, Department of Special Education, University of Vermont.
25
3. What are the symptoms of you disability? How did your doctor reach his/her
diagnosis?
5. If you are taking prescribed medication(s), do you know the kind of medication(s)
and dosage(s)?
6. Do you know the side effects of the medication(s) you may be taking?
8. What possible treatment for your disability has been discussed by your doctor,
treatment team, etc., with you? Do you understand what the Treatment Plan is?
Reprinted with permission from Self-Advocacy: A Resource and Training Manual for Mental Health Consumers, Ex-patients and
Psychiatric Survivors, Connecticut Self Advocates for Mental Health, Inc.
26
Activities A & B were taken from Self-Advocacy: A Resource and Training Manual for Mental Health Consumers, Ex
Patients and Psychiatric Survivors, Connecticut Self Advocates for Mental Health, Inc. Activity C was developed by Dr.
Patricia Phillips, East Lyme High School, East Lyme, CT.
27
28
arranged it this way because I didnt know what to expect from her and I didnt know if I
was going to need extra time. However, I finished the exam in less than an hour, which
is exactly what the rest of the students took. I knew I did well as soon as I turned in my
test and it was great hearing my teacher say, You did very well, George, and I dont
think you need to take the test down in the learning center anymore. This was evident
because I studied for each test from the homework sheets, disciplining myself to review
and reflect upon the material. I was able to earn two B+s and two As on four tests
ending up with an A- average for the course.
The most important thing that I accomplished in this course was that I changed a
teachers view on students with learning disabilities. I also heard from other teachers
that my teacher was amazed by my accomplishments and that she never realized that a
student with so many learning problems could do so well in such a difficult and
demanding history course. Also it makes me feel good to know that my success
changed her views on what students with learning disabilities could achieve and
compensate for themselves. She also stated that in the future she would need to be
more receptive to accepting and encouraging students with LD in her classes. One
thought is nice to know is that instead of the teacher teaching the student, the student
taught the teacher a little something for a change. Throughout life everyone learns a
lesson. In my case I learned and taught someone else that just because a student has
a learning disability doesnt mean that he or she cant use his or her talents or abilities
to achieve a certain goal. When you combine that with a strong passion or desire for
something, there isnt much that can stop you except giving up.
Reprinted with permission from the Postsecondary LD Network News, A.J. Pappanikou
Center, #19, Fall, 1993
29
SHOULD I TELL?
Name: _____________________________ Date: ___/___/___
PROS
CONS
+ _____________________
- _________________
+ _____________________
- _________________
+ _____________________
- _________________
+ _____________________
- _________________
+ _____________________
- _________________
_________________________________________________________________
Under what conditions and to whom should I keep my disability to myself?
30
31
Least
Like me
32
33
Social-Individual
513212937-
412202845-
Total____x2=_____(score)
Visual Numerical
Total____x2=_____(score)
Social-Group
917253341-
816243240-
Total____x2=_____(score)
Auditory Language
Total____x2=_____(score)
Expressiveness Oral
311193644-
614223038-
Total____x2=_____(score)
Score:
Total____x2=_____(score)
Auditory Numerical
715233139Total____x2=_____(score)
Kinesthetic-Tactile
118263442Total____x2=_____(score)
Expressiveness-Written
210273543Total____x2=_____(score)
34
35
Sept-Nov-Jan-Apr-June
1.
2.
3.
4.
5.
_____________________
_____________________
_____________________
_____________________
Sept-Nov-Jan-Apr-June
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
36
V. Report Writing
Sept-Nov-Jan-Apr-June
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
Sept-Nov-Jan-Apr-June
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
_____________________
Developed by Karen Decker and Susan Spector, South Windsor High School, South Windsor, CT. Reprinted with permission.
37
38
INSTRUCTIONAL MODIFICATIONS
READING
Extended time
Reader
Taped textbooks
Oral exams
Taped exams
Separate location
Alternate test format
Other:
WRITING/SPELLING
Extended time
Notetaker
Tape recorder
Oral exams
Computer with spell-check
Alternative demonstration of mastery
Scribe
Proofreader
Other:
LANGUAGE
Extended time
Notetaker
Tape recorder
Oral exams
Computer with spell-check
Alternative demonstration of mastery
Scribe
Proofreader
Other:
MATH
Extended time
Use of calculator
Talking calculator
Separate location
Alternate test
format
Other:
AUDITORY
VISUAL/PERCEPTUAL
PROGRAM MODIFICATIONS
Tape recorder
Notetaker
Visual clues
Physical proximity
study
Other:
Tape recorder
Taped textbooks
Auditory cues
Physical proximity
Extended time
Oral/taped exams
Separate location
Alternate test format
Proofreader
Other:
39
1.
Yes
No
2.
Yes
No
3.
Yes
No
4.
Yes
No
5.
Yes
No
6.
Yes
No
7.
Yes
No
8.
Yes
No
9.
Yes
No
Yes
No
Yes
No
10.
11.
Reprinted from Speak Up for Health Parent Handbook, 1993, with permission from PACER Center, 4826 Chicago Ave. S., Minneapolis, MN; (612) 827-2966.
40
41
Performs
Independently
Performs
Parts
Independently
Needs
Practice
Plan
To
Start
Skill
Accomplished
Performs
Independently
Performs
Parts
Independently
Needs
Practice
Plan
To
Start
Skill
Accomplished
Adapted from Adolescent Autonomy Questionnaire in West, Margaret A., (Editor) (1988) Assessment for Adolescents with Special Needs: A Guide for Transition Planning. University of Washington
Press, Seattle, Washington. Reprinted from Speak Up for Health Parent Handbook, 1993, with permission from PACER Center, 488 Chicago Av. S., Minneapolis, MN 55417; (612)827-2966.
43
INDEPENDENCE ACTIVITIES
Activity A:
Discuss the fact that independence can be described in many ways. Some
of these ways include:
Freedom
Making your own decisions
Having control, power
Choosing your own friends
Deciding what to wear
Doing what you want to do
Doing things without our parents
Taking care of yourself
Paying your own way
Activity B:
Have students take a few minutes to think about the specific needs in their
life that they feel hamper their independence. For example, some students
may have to ask for help in brushing their hair or emptying their catheter.
Some may need help in reaching dishes on a shelf or getting in or out of
the car. Some may need help carrying a tray in the cafeteria. Some may
need extra time changing classrooms at school.
Have students ask themselves:
Activity C:
45
Problem:
If you need a lot of help because of your disability, how can you still be
independent?
Idea:
Activities A, B &B C were taken from the book Taking Charge: Teenagers Talk about Life and Physical Disabilities, by Kay Harris Kriegsman,
Elinor L. Zaslow, & Jennifer DZmura-Rechsteiner. Copyright 1992 by Woodbine House. Reprinted by permission of Woodbine House, Inc.,
Publishers.
46
CHOICES
Made By Person
Made By Others
This activity is part of the Personal Futures Planning Process developed by Dr. Beth Mount and was reprinted from a mini-handbook on Personal
Futures Planning written by Dr. Joe Patterson.
47
Think of a group in which you are a member. Rate yourself on your ability to
participate effectively in the group by marking Always, Sometimes, or
Never, for each of the skills listed below.
When I am in a group, I:
Always
Sometimes Never
1. Look at the person who is speaking.
2. Keep my hands & feet to myself.
3. Show others that I am paying attention to
what is being said.
4. Use a calm and quiet voice.
5. Avoid put-downs or others.
6. Avoid interrupting others.
7. Ask others to explain if I dont understand
what is being said.
8. Answer questions that are asked of me.
9. Contribute at least 3 ideas to group discussions.
10. Contribute more than 3 ideas to group
discussions.
11. Make people laugh when appropriate.
12. Give others ideas on how to do things more easily.
13. Like to participate in discussions.
14. Like to notice what other group members are
saying o=and doing.
15. Like to keep track of the time.
16. Like to write down the groups ideas and plans.
17. Like to lead group discussions.
2
Skills
Need Improvement
3
Good
4
Very Good
5
Excellent
Reproduced from Speak up for Yourself and Your Future! Department of Special Education, University of Vermont, 1993.
48
RESPECT
1. ___________________
1. ___________________
2. ___________________
2. ___________________
3. ___________________
3. ___________________
4. ___________________
5. ___________________
6. ___________________
7. ___________________
8. ___________________
9. ___________________
10. ___________________
This activity is part of the Personal Futures Planning Process developed by Dr. Beth Mount and was taken from a mini-handbook on
Personal Futures Planning written by Dr. Joe Patterson.
49
ORIGINS OF ATTITUDES
There are many influences in molding peoples attitudes. From a broad
perspective society and the media, including TV, radio and newspaper, have an
influence in determining attitudes. From a narrower aspect, family, friends, peers, and a
persons own observations and life experience also add to a persons attitudes.
A young child tends to identify with the parent of the same sex excluding the
other parents career choice as a viable alternative for him. For example, a little girl
whose father is a chef and whose mother is a teacher will not consider being a chef
when she grows up. Or a little boy whose mother is a doctor and whose father is a
teacher will not consider being a doctor.
The largest impact on shaping a persons attitude comes from within his own
family. The family influence is so strong that a person may assume many of the
attitudes he disagrees with on a subconscious level, at least. This does not occur
through direct teaching from the persons parents or other family members, but rather
the person picks up the necessary cues from observation. Children see and internalize
much more than most realize from their families. They observe how their parents get
along, how the parents treat the other children, how parents treat outsiders, what
parents expect from every child in the family and, of course, how the individual is
treated and what is expected from him.
Another person or persons who affect childrens attitudes are the significant other
adults in their lives. That may be a grandparent, an aunt or uncle, a cousin, a grown
brother or sister or just a close adult friend.
All of the family influences occur primarily during the early years. As the
individual grows older, into the teen years, the importance of family and its influence
decreases and the influence of peers takes on greater significance.
The greatest impact on attitudes is from the family. Next is the impact from
peers. And probably least significant is the influence from the media. However, all of
these influences add up to be the sum total of the individuals attitudes.
Reprinted with permission from the World Program, Jefferson County School District R-1, Colorado.
50
MY FUTURE
Objective:
Activity A: Hold a group discussion about lifestyle: what it is, who and what
influences our lifestyles, and how it impacts on the quality of our
lives.
Activity B: Have students describe their present lifestyle, and how they want it
to look five years from now. Examine the differences between the
two and discuss ways to bridge those differences over time. Which
factors can they control and which are beyond their control? How
important is money to their future lifestyle? Have leisure activities
been added or deleted?
Activities A & B were taken from Transition Issues Curriculum, Montezuma-Cortez School District RE-1, and the Colorado
Department of Education, Special Education Services Unit, 1991.
51
MY FUTURE
Objective:
Materials Required:
Activity A was taken from the World Program, Jefferson County School District R-1, Colorado
52
PERSONAL PROFILE
My greatest strengths are:
Work Experience:
Licenses:
My disability is:
Adapted and reprinted with permission from A Students Guide to the American with Disabilities Act", Hospital Industries Program,
Department of Rehabilitation Medicine at Maine Medical Center, Portland, Maine.
53
2: Communication/Assertiveness
Published by:
STIR Steps Toward Independence and Responsibility
and
Shifting the Power,
projects of the
Clinical Center for the Study of Development and Learning, UNC-CH
For further information please call Rebekah Pennell at (919) 966-5171.
5-6
9-12
13
How to Negotiate
14
15
16
17
18
Activity B
18
Activity C
18
Activity D
18
Peer Evaluation
Behavior Observation Chart
Criticism
19
20-21
22
Activity B
22
Activity C
22
Activity D
22
Activity E
23
24
25
Activity B
25
Activity C
25
Activity D
25
Activity E
25
Activity F
25
26
Activity A
27
Activity B
27
Activity C
27
Activity D
27
Assertiveness
Assertiveness IsAssertiveness Is Not
Being Assertive is Not My Style
28-29
30
31
31
31
31
32-33
FEELINGS
Happy
Questioning something
Mad
Disgusted
Frustrated
Grateful
Amused
Bored
5
FEELINGS
What makes you upset?
slumps when standing and seems afraid to look at you when talking to you
sits down as though sitting on eggs, too self-conscious to move
is uncomfortable looking at you for more than an instant
is afraid to take the initiative in greeting people and waits for others to give
permission to say hello
sits inconspicuously away from persons perceived as powerful or
threatening
is afraid to speak unless spoken to and given specific permission to speak
seldom carries information or materials to meetings
is either under-or overdressed, for a picnic or a party
becomes unpleasant, argumentative or rude when expressing a viewpoint.
Reprinted with permission from How to Get Services by Being Assertive published by the Family Resource Center on
Disabilities, Chicago, IL, 1993.
Adapted from A Self-Advocacy Curriculum for High School Students Who Have Been Labeled
Learning Disabled and Educatably Mentally Handicapped by J. Stephen Hazel, et. Al. Kansas:
Kansas University, Draft Copy, 1987. Teachers Manual, pp. 24 and 25.
Self-Advocacy Curriculum: Teaching Self-Advocacy to Adults with Disabilities, The Self-Advocacy Project, Alamance
Community College, 224 E. Front St., Burlington, NC 27215.
Aggressive
Assertive
In order to get what you want, you must be able to tell people what you want in a
way that helps them to want to listen. How you say something, or your style of
communication, is very important.
Lets look at three common styles of communication and see which one is best.
The following pages have been adapted from The Assertiveness Program Washington: People
First of Washington, 1983, pp. 2 5.
Self-Advocacy Curriculum: Teaching Self-Advocacy to Adults with Disabilities, The Self-Advocacy Project, Alamance
Community College, 224 E. Front St., Burlington, NC 27215.
Non-assertive
You are being nonassertive when you:
-
you mumble
little
childish
10
Aggressive
You are aggressive when you:
-
are pushy
a loudmouth
a troublemaker
11
Assertive
You are assertive when you:
-
an adult
able to do things
- independent
honest
Self-Advocacy Curriculum: Teaching Self-Advocacy to Adults with Disabilities, The Self-Advocacy Project, Alamance
Community College, 224 E. Front St., Burlington, NC 27215.
12
Adapted from A Self-Advocacy Curriculum for High School Students Who Have Been Labeled
Learning Disabled and Educably Mentally Handicapped by J. Stephen Hazel, et. al. Kansas: Kansas
University, Draft Copy, 1987. Teachers Manual, p. 24.
Self-Advocacy Curriculum: Teaching Self-Advocacy to Adults with Disabilities, The Self-Advocacy Project, Alamance
Community College, 224 E. Front St., Burlington, NC 27215.
13
How to Negotiate
Negotiation Skill Steps
1. Face the other person.
2. Look in the eyes of the other person.
3. Use a good voice tone (not too loud or whiny).
4. Use a good facial expression.
5. Use good body posture (straight or relaxed).
6. Use good listening skills.
7. Ask for what you want.
8. State the reason why you want it.
9. Thank the other person if he or she agrees to the request.
10. Suggest a compromise if he or she does not agree.
11. Say thanks if the person agrees with your compromise.
Ask the other person for a solution if he or she does not agree with the
compromise.
12. Say thanks if you agree with the other persons solution.
Suggest a different idea and keep on negotiating if you dont like the other
persons solution.
If you need time to think about a solution, ask for it. Also ask the other person
when you can talk with him or her again.
Adapted from A Self-Advocacy Curriculum for High School Students Who Have Been Labeled
Learning Disabled and Educably Mentally Handicapped by J. Stephen Hazel, et. al. Kansas: Kansas
University, Draft Copy, 1987. Teachers Manual, pp. 24-26.
Self-Advocacy Curriculum: Teaching Self-Advocacy to Adults with Disabilities, The Self-Advocacy Project, Alamance
Community College, 224 E. Front St., Burlington, NC 27215.
14
DID PLAYER:
1. Face other person?
8. State reasons?
This form was adapted from one used in A Self-Advocacy Curriculum for High School Students Who
Have Been Labeled Learning Disabled and Educably Mentally Handicapped by J. Stephen Hazel, et.
al. Kansas: Kansas University, Draft Copy, 1987. Teachers Manual, pp. 24-26.
Self-Advocacy Curriculum: Teaching Self-Advocacy to Adults with Disabilities, The Self-Advocacy Project, Alamance
Community College, 224 E. Front St., Burlington, NC 27215.
15
1. Refusal Assertiveness How to say no at the right time and in the right
way
State your position No, I cant.
Explain your reason I have something else to do that day.
Express understanding I hope you can find something else.
2. Expressing Feelings telling people how you feel
Express positive feelings You did a great job.
Express negative feelings I am upset by what you did.
3. Request Assertiveness To get information, clarification, and ask for
what you want
State the problem Boss, you have given two different instructions.
Make a request Can you let me finish one project before starting the
other?
Getting clarification Can you explain what you want done again?
16
Source: Alberti, R.E. & Emmons, K.L. (1982). Your Perfect Right: A guide to assertive living. San Luis Obispo, CA: Impact.
17
Activity B:
Review the handout Let Your Body Say Positive Things About You.
Discuss the importance of body language in self-advocacy.
Activity C:
Activity D:
Activities A through C were taken from How to Get Services by Being Assertive published by the Family Resource Center on
Disabilities, Chicago, IL, 1993. Activity D was taken from Tools for Transition: Preparing Students with Learning Disabilities for
Secondary Education, 1991, American Guidance Service, Inc., 4201 Woodland Road, Circle Pines, MN 55014 by Elizabeth
Aune and
Jean Ness. Reproduced by permission of publisher. All rights reserved.
18
Situation 1
Situation 2
Situation 3
Reprinted from Tools for Transition: Preparing Students with Learning Disabilities for Secondary Education, 1991,
American Guidance Service, Inc., 4201 Woodland Road, Circle Pines, MN 55014 by Elizabeth Aune and Jean Ness.
Reproduced by permission of publisher. All rights reserved.
19
Criticism
Criticism Dont Let It Get to You
There are three ways to handle criticism assertively. Each way is designed to
help you deal with the criticism so that you can make a decision about what
behavior, if any, you will change.
Keep in mind that criticism deals with behavior things you say and do not
your personality.
The three ways of handling criticism are:
1. If there is truth in the criticism, agree with it.
There is always the possibility that there is some truth in what others say
about you. For example, somebody might say to you, You are always
minding everybody elses business. You might reply with, Yes, sometimes I
get too involved in other peoples business.
2. If you have made a mistake, acknowledge assertively what you did.
Remember, you are only saying that you made a mistake and nothing about
yourself as a person. For example, the teacher says Whats the matter with
you, the assignment was supposed to be 13-D, not 13-C. You might say,
Oops, I made a mistake. Ill do the correct assignment.
3. If somebody continues to criticize you when it is not necessary, ask him what
it is exactly that you are doing that bothers him.
For example, somebody has criticized your new jeans as being too short for
you. You have agreed that the jeans are too short but the person continues
to make a big deal out of it. At this point you might say something like, I am
not sure that I understand. What is it exactly about my short pants that you
dont like?
When you use any combination of the above three techniques for handling
criticism assertively, then you are helping yourself get through an unpleasant
situation without feeling guilty or dumb. Knowing that you handling criticism,
as a responsible person will help you avoid shouting matches and name
calling sessions. Dealing with criticism assertively will allow you to become
closer to the person you want to be.
Reprinted with permission from the World Program, Jefferson County School District R-1, Colorado.
20
Activities A through D were taken and adapted from the World Program, Jefferson County School District R-1, Colorado.
Activity E was taken from Tools for Transition: Preparing Students with Learning Disabilities for Secondary Education,
1991, American Guidance Service, Inc., 4201 Woodland Road, Circle Pines, MN 55014 by Elizabeth Aune and Jean Ness.
Reproduced by permission of publisher. All rights reserved.
21
Materials Required: Videotape and Behavior Observation Chart for Accepting Self
inTools for Transition by Elizabeth Aune and Jean Ness (Behavior Observation
Chart is included here, the Videotape is available for loan through the Special
Education Resource enter (SERC), Middletown, CT.)
Activity A:
Activity B: Distribute the Criticism Student Handout, and review the three tips
provided for handling criticism.
Activity C: Ask students to write down something for which they were recently
criticized. Using the tips for handling criticism, have students determine if and
how they handled the criticism assertively.
Activity D:
22
Activity E:
Check the
Behaviors You
Observed
Taking
Responsibility for
Ones actions
Being realistic
About ones
Capabilities
Ask for volunteers to role-play the scene shown on the video showing
one of the behaviors the group selected.
The following sequence for role-playing is recommended.
1. Describe the situation.
2. Encourage students to visualize what they will say and do (visual
rehearsal).
3. Tell students to talk through what they will say and do (verbal
rehearsal).
4. Have students act out the situation.
23
Activity A was taken and adapted from How to Get Services by Being Assertive published by the Family Resource Center on
Disabilities, 20 East Jackson Blvd., Room 900, Chicago, IL, 1993.
24
Activities A through F were taken from We Can Speak for Ourselves, by Paul Williams and Bonnie Shoultz, Indiana University
Press,
Bloomington, Copyright 1982.
25
Look the person you are talking to in the eye. If you are short or use a
wheelchair, you will sometimes have to draw attention to yourself by speaking
directly to the person. If he or she seems unwilling to look at you, you might
find some clever yet polite way to say, Im right here! How you do that
will depend on your personality. For someone who is extroverted, that might
mean carrying a red bandana to wave. For someone who is more introverted,
that might mean speaking in a louder, stronger voice.
Speak clearly and distinctly in whatever way you can. If you have a speech
disability, calm your anxiety by trying to relax the muscles in your body, taking
in deep breaths of air and exhaling slowly. Speak slowly and as distinctly as
you can. Sometimes it helps to calm yourself by visualizing a soothing image,
such as a mountain stream or a quiet meadow in springtime. You will find
that your whole body will relax and that you will be able to focus on your
thoughts and your message. If you are calm, the other person will relax and
be able to concentrate on what you are saying. If you use a speech
synthesizer to speak, you may want to give the person a little note explaining
this device. You will think of other ways to communicate.
If the person addresses everyone around you, but not you, tell the person
nicely and firmly that you speak for yourself and that you would like to be
addressed directly.
Think about what you want to say and how you want to say it before you
begin speaking.
Note: Assertiveness also means that you dont attack others in stating your needs.
For instance, you dont berate the store clerk because the counters are too high for
you to see over. That complaint will need to be given to the store owner/manager.
Assertiveness means that you stand up for yourself in an adult, responsible way. It
is not aggressive; it is not passive. Remember to keep the balance! And to be
yourself!
Reprinted with permission from Taking Charge: Teenagers Talk about Life and Physical Disabilities, by Kay Harris Kriegsman,
Elinor L. Zaslow, & Jennifer DZmura-Rechsteiner. Copyright 1992 by Woodbine House. Reprinted by permission of
Woodbine House, Inc., Publishers.
26
Activity D was reprinted with permission from How to Get Services by Being Assertive published by the Family Resource
Center on Disabilities, Chicago, IL, 1993. Activities A through C were taken from We Can Speak for Ourselves, by Paul
Williams and
Bonnie Shoultz, Indiana University Press, Bloomington, Copyright 1982.
27
Assertiveness Is
Assertiveness Is Not
What is assertiveness? There are many definitions and many examples of
assertiveness. We offer the following as a sample.
Assertiveness is:
1. expressing your needs clearly and directly
2. expressing your ideas without feeling guilty or intimidated
3. sticking up for what you believe you need even though professionals may not
agree
4. knowing your rights and how to get them
5. documenting what you need and all facts pertaining to your case
6. collaborating with service providers and treating them like partners
7. effective communication
8. conveying your feelings of self-confidence when you communicate with others
9. advocating effectively on your own behalf
10. self-reliance and independence
11. persisting until you get all the services you need
12. analyzing a problem and pinpointing the area of responsibility before you act
13. agitating to get necessary legislation passed and implemented
14. organizing for change
15. having a positive attitude at all times
16. being strong when others are weak
17. joining others who are organizing for change
18. taking pride in your accomplishments
19. having the courage to dream and developing the skills to make those dreams
come true
Assertiveness is not:
1. beating around the bush before stating your needs
2. feeling too guilty or afraid to express your needs
3. agreeing with professionals no matter how you feel because professionals
know whats best
4. ignorance about your rights
5. leaving everything to others because they know how to do these things
6. accepting inappropriate or inadequate services because its easier to let
professionals handle things
7. ineffective communication
8. begging for what is legitimately yours by law
9. abdicating to others your right to self-advocate
10. reliance and dependence on others
28
Assertiveness Is
Assertiveness Is Not(continued)
11. giving up when you run into red tape
12. acting precipitously before you get all the facts
13. letting the politicians take care of laws and all that political stuff
14. accepting the status quo because nothing can be done
15. giving in to defeat
16. being swayed by others who have a no win attitude
17. acting only on behalf of yourself
18. being uncomfortable about your accomplishments
19. refusing to dream
Reprinted with permission from How to Get Services by Being Assertive published by the Family Resource Center on
Disabilities, Chicago, IL, 1993.
29
Adapted and reprinted with permission from How to Get Services by Being Assertive published by the Family Resource
Center on Disabilities, Chicago, IL, 1993.
30
Tells students that: You are what you think you are. Start thinking
Assertively and you will become the assertive person you want to be.
Then go around the room, asking each student to complete the
following sentence:
I wish I were more
(Example: I wish I were more assertive; I wish I were more gutsy.)
Repeat the exercise with a new sentence:
I can be more __________ by ___________.
(Example: I can be more assertive by being informed about my rights
and insisting on what Im entitled to.)
Activity C:
Activity D:
31
trade associations
professional associations
student associations
pressure groups
There are also many individual examples. Here are just a few (listed alphabetically):
Susan B. Anthony whose persistence in the long struggle for female suffrage
won American women the right to vote in 1919.
Carol Mosely Braun who shook up Illinois politicians when she defeated the
undefeatable Alan Dixon in the Illinois Democratic primary for U.S. Senate
and is predicted to become the first African-American woman in the U.S. Senate.
Jane Bryne (Chicago ex-mayor) whose outspoken assertiveness got her fired
from her job in City Hall but a year later, got her elected the head of City Hall.
Betty Friedan whose 1963 book The Feminine Mystique, launched the
womens liberation movement.
Patrick Henry his assertive Give me liberty or give me death became the
rallying cry of the American Revolution.
32
Abraham Lincoln whose assertive refusal to allow the South to secede from
the Union led to the Civil War and the emancipation of African-American slaves.
Ralph Nader who has organized the strongest consumer movement in the
nation, and has succeeded in making our politicians and our manufacturers
accountable.
St. Bernadette Soubiroux whose quiet and persistent assertiveness won over
her detractors, who eventually proclaimed her a saint.
Harry Truman whose gutsy assertiveness got him the nickname Give Em
Hell Harry, and won him a presidential election many had predicted he would
lose.
33
3. Problem Solving
Published by:
STIR Steps Toward Independence and Responsibility
And
The Self-Determination Resource Center,
Projects of the
Clinical Center for the Study of Development and Learning, UNC-CH
For further information, please call Rebekah Pennell at (919) 966-5171
3-4
5-7
10-11
Example: Mary has planned to go out for lunch today since she has just
received her paycheck. She asks Susan to join her but they have to
decide where to go eat. Mary likes Mexican food but Susan wants to go to
a fast food restaurant. Mary knows she might not be able to afford going
out for a while and she feels she should go eat what she really wants. On
the other hand she does not want to upset Susan who said she would not
consider her a friend anymore if she does not go with her to McDonalds.
Mary finally lets Susan decide where to go because she wants her to
continue to be her friend.
Example a: John accidentally bumped into bill on the way to sharpen his
pencil. Bill called John a name. John punched Bill in the nose. John is
suspended for starting a fight.
Example b: The supervisor comes to check on the work of Mike who is
stuffing envelopes. He discovers that Mike has been putting the wrong
flyers in the envelopes and tells him that. Mike becomes upset because
he has already done 200 envelopes and now he has to redo them and
miss his lunch break. He yells and threatens the supervisor and leaves
the workplace to outside for a break. The consequence might be that he
does not get a raise or he might even be terminated for his impulsive
behavior.
tables she has to clean and prepare for the new group that is to come.
She wants to do her job but she forgot the instructions. As a result, she
just sits there unable to do anything.
Example a: A co-worker tells Helen to help her clean the floors but the
boss has told her to empty the garbage cans. Helen wants to be helpful to
her friend but she does not want to disobey her boss and risk being fired.
Example b: A neighbor keeps borrowing money from Joe and he never
pays him back. This way, Joe does not have enough money to buy things
for himself and he would like this situation to stop.
Example c: Steve wants to watch a TV program but his roommate wants
to watch another one. The roommate has been watching TV for the last
hour and now Steve feels that it should be his turn to watch what he
wants.
I will be calm
I can do this
I can relax
Problem: John comes home from work and discovers that his CD player is
broken. He knows Joe has been home all day and that he likes to listen to
his CD player since he doesnt have one. Lisa and Steve are also living in
the same house, but neither of them have expressed an interest in Johns
CD player. Thinking about how Joe could have broken his CD player,
John starts to get angry but before going too far he remembers to use the
problem-solving strategy. Instead of heading directly to where Joe is
sitting and watching TV and screaming at him, he follows these steps:
STEP 1: Relax
John takes a deep breath and feels his tension going out when he lets the
air out. He relaxes his muscles and he feels he is in control of his body as
well as his actions.
STEP 2: Positive self statement
John says to himself, I can remain calm and he feels confident in this
abilities to handle the situation without losing control.
STEP 3: Identify problem
John has to ask himself first What is the problem? What makes me so
upset? Instead of identifying the problem by blaming Joe (e.g., Joe broke
my CD player), John states the problem as being, I found that my CD
player is broken. John did the right thing because he has no confirmation
that Joe actually broke his CD player.
Advantages
(good things that might happen)
Disadvantages
(bad things that might
happen)
Name: ____________________________
Possible
solutions
Advantages
Disadvantages
A.
A.
A.
B.
B.
B.
Resources
C.
C.
C.
D.
D.
D.
10
Step two
Deep Breathe
Talk to
Yourself
( you can do it!)
Step three
Think of Solutions
Step five
Just Do It!
11
We can do
What?
7- 46
Date
Get Married
Have Children
Open Your Own Mail and Send Other People Mail
Choose Your Job and Receive Fair Pay
Choose How to Save or Spend Your Money
Choose Where to Worship and How to Express Your Beliefs
Have a Place to Be Alone
Choose Your Friends
Call and Visit Family and Friends
Decide What You Want to Eat
Choose Where You Want to Live
Come and Go as You Wish
Have Visitors
Live in a Clean Furnished Home
Privacy And To Expect People To Knock Before Entering
Have Your Own Belongings
Do Group Activities or Do Things By Yourself
Get an Education
2
Choose Your Own Doctors and See Doctors When You Want
Agree or Refuse to Participate in Research
Have, Receive or Refuse Regular Therapy Services
Not to Be Put Down by Words or Actions
To Be Treated Fairly And With Respect
Calm Yourself Down When You Are Upset Before Other Means Are Used
Get Help
Choose an Advocate
Expect Public Places to Be Accessible
Join Community Groups
Plan and Enjoy Fun Activities
Right to Vote
To Decide If You Want Your Picture Taken
Get Needed Services
Request a Guardian
Have Your Treatment Plan Written or Reviewed at
a Meeting with You
Decide Who Can See Your Records and To Have Access To
Your Records at All Times
Introducing The Concept Of Basic Human Rights
Activity A
47
Activity B
47
48
49
Activity B
49
50
51
52-69
70-73
74-80
81
Transition Amendments
Transition Amendments to IDEA
82-83
84-85
86
87-90
Order of selection
91-93
94-96
97
98-101
102
103-106
107-112
Sample letter
113
114-115
116
4
117
118-120
Activity: Voting
121
Voting: Handout
123-124
125
126
Additional Resources
Listed in this resource guide are agencies that Federal Laws mandate. These
agencies can provide information and resources. Every states agencies are
listed in these directories. There is also a description of what the agencies
duties. Please take the time to look at each one. If you have a friend or relative in
a different state please share the information for their state with them.
Organization
Page
Outline
127-129
130-143
144-157
158-169
170-181
NICHCY
182-183
184
As you read and discuss the laws and information in this manual, keep in
mind that laws continue to change and be updated. This manual provides
you with agencies that can keep you up to date with current law. Some of
the laws used in this chapter have already been updated and are used as
examples.
Rules
Rights
Responsibilities
10
Responsibilities
Intimacy issues
Responsibilities
12
Responsibilities
13
Responsibilities
Let others know not to open your mail unless you tell
them it is O.K.
Respect other peoples mail
o
Do not open others mail
Let others know if you need help reading or responding
to your mail
Role Play
14
Responsibilities
Responsibilities
Location: Bank
Situation: You are speaking with a customer service
representative about opening a savings or a checking
account.
Role Play: What different types of accounts
do they offer?
Is there a penalty for spending
more money than you have in
your checking account?
16
Responsibilities
17
Responsibilities
18
Responsibilities
19
Responsibilities
Visits
Arrange visits ahead of time
Calling
Responsibilities
Know what you can and cannot eat for health reasons
such as
Diabetes, high blood pressure, high cholesterol or if
your doctor gives you a special diet
Role Play
21
Responsibilities
22
Responsibilities
Let others know where you are going and when you will
be back
Be back when you say you will be back or call and let
someone know if you will be late
Role Play
23
Responsibilities
24
Responsibilities
25
Responsibilities
26
Responsibilities
27
Responsibilities
Group
Work together with the group
Alone
Let others know when you would like to be alone
28
Responsibilities
What classes would you like to attend?
Make sure you complete assignments.
How will you pay your tuition and bills?
Follow rules in the class.
Role Play
Location: Home, group home
Situation: You are talking to your parents or staff about
education.
Role Play: Would you like to attend classes?
What are you interested in taking?
What rules do you need to follow?
Will you need help in class or with
your assignments?
29
Responsibilities
Responsibilities
31
Responsibilities
32
Responsibilities
Say no!
33
Responsibilities
34
Responsibilities
35
Sure!
Can you help me?
Responsibilities
36
Sure!
Responsibilities
37
Responsibilities
Handicapped parking
Braille
Elevators
Accessible aisles
Handicap restrooms
38
Special Olympics
Bowling League
Athletic Booster
Church Group
Responsibilities
39
Responsibilities
40
Responsibilities
Register to vote
41
Responsibilities
42
School
Case Management
Court House
Responsibilities
43
Responsibilities
44
Responsibilities
Give input about what you want and how you feel
Role Play
45
Responsibilities
46
Define rights simply as the rules that help make people equal.
The need for agreement among lots of people in order for a right to be
established can be discussed, and experiences can be recounted by
individuals of attempts to take away their rights.
It can be pointed out that rights apply to everyone, by virtue of their being
a human being and a citizen of their country, and they can only be taken
away in very special and rare circumstances. Simply having a disability or
being different is not a good enough reason on its own for a right to be
denied to a person.
Activity B:
Have students draw up their own list of rules that they would like to see
adopted to help ensure equality between people with and without
disabilities.
The list can then be reviewed to see what problems there might be in
gaining general agreement to those rights. In the end a Character of
Rights might be drawn up, that the group is willing to work to get general
agreement on and to see enforced.
To assist the group in deciding on important human rights, there are many
sources of lists drawn up by others; some are declarations of the rights of
everyone, some apply specifically to people with disabilities, and some
apply to people in special circumstances like living in a hospital or
residential establishment.
The Self-Advocacy Workbook, written by Nancy Gardener for the former
TASA project based at the University of Kansas, gives this basic list.
The right to life
The right of choice
The right to freedom
The right to try to be happy
The right to make up your own mind
The right to choose the people you want to be with
The right to be listened to
The right to eat what you want
The right to go to bed when you want
Playing a role in choosing the people who make decisions that affect our lives, and pass the laws that
protect or restrict us, is one of the most important abilities that we have in democratic countries.
-Quote taken from We Can Speak for Ourselves by Paul Williams and Bonnie Shoultz
Activities A & B were taken from We Can Speak for Ourselves, by Paul Williams and Bonnie Shoultz, Indiana University Press,
Bloomington, Copyright 1982.
47
Ask questions about why your rights are being limited. Keep
asking questions until you understand what is happening.
Write down the answers you are given, or get the answers on tape.
Get as much information as you can. Make sure it is correct.
Get a friend to help you if you want to. Some towns have services
that can help you get a friend who knows about advocacy.
Find out what all the choices are. Pick out the ones that are best
for you.
Decide what you think about what is happening. Decide what
steps you need to take to reach your goal.
Know who to talk to and who is in charge. Go to the person who
makes the decisions.
Know and use your rights. The main ones to remember when your
rights are being limited are: the right to know all the information;
the right to appeal and ask for a change in decision before you
agree; the right to know what is happening all the time and why it
is happening.
Activity A was taken from We Can Speak for Ourselves, by Paul Williams and Bonnie Shoultz, Indiana University Press,
Bloomington, Copyright 1982.
48
Discuss the fact that side by side with rights go responsibilities. The
TASA Workbook uses the analogy that, just as we have to pay money for
some things we want, we have to do our duties to get our rights. One
approach to teaching this concept might be to point out that if we wish to
have our own rights respected, we must respect the rights of other people,
and this involves behaving towards them in a responsible way. We must
also not waste our rights by using them carelessly or without adequate
preparation or information.
Examples in the Workbook include the responsibility to register as a voter
ahead of time and to know who the candidates are, before exercising the
right to vote; the responsibility to come to work every day, to be on time
and to do the job as well as you can, when exercising the right to work and
make money; and the responsibility to learn to wait at the right bus stop,
have the money for the fare, and know how to get where you need to go,
before exercising the right to use the public bus.
Responsibilities can also include more general aspects of behavior such as
courtesy and consideration for others, and following rules of meetings.
Activity B:
Activity A & B were taken from We Can Speak for Ourselves, by Paul Williams and Bonnie Shoultz, Indiana University Press,
Bloomington, Copyright 1982.
49
Knowledge is
Power!
It has often been said that knowledge is power. This equation has
even greater meaning for individuals with disabilities who are striving
towards self-determination and empowerment.
Passage of the American with Disabilities Act, as well as recent
amendments to the Individuals with Disabilities Education Act and the
rehabilitation Act of 1973, all symbolize our countrys commitment to
empowerment and equality. To ensure the individuals with disabilities
are afforded due process and protection under the law, it is critical
that students understand the major provisions of these acts.
50
Activities B & C were taken from A Students Guide to the Americans with Disabilities Act, Hospital Industries Program,
Department of Rehabilitation Medicine at Maine Medical Center, Portland, Maine.
51
52
www. eeoc.gov
Publications and information on EEOC- enforced laws may be obtained by
calling:
(800) 669-3362 (voice) (800) 800-3302 (TTY)
For information on how to accommodate a specific individual with a disability,
contact the Job Accommodation Network at:
(800) 526-7234 (voice/TTY)
http://janweb.icdi.wvu.edu/english
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55
56
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Telecommunications Act
Section 255 and Sections 251(a)(2) of the Communications Act of 1934,as
amended by the Telecommunications Act of 1996, requires manufactures of
telecommunication equipment and providers of telecommunications services to
ensure that such equipment and services are accessible to and usable by
persons with disabilities if readily achievable. These amendments ensure that
people with disabilities will have access to a broad range of products and
services such as telephones, cell phones, pagers, call waiting, and operator
services, that often inaccessible to many users with disabilities. For more
information contact:
Federal Communications Commission
445 12th Street, S.W.
Washington, D.C. 20554
www.fcc.gov/cib/dro
(888) 225-5322 (voice)
(888) 835-5332 (TTY)
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For questions about the Fair Housing Act, you may call the Office of Fair
Housing and Equal opportunity at:
(202) 708-2333 (voice)
For publications, you may call the Housing and Urban Development
Customer Service Center at:
(800) 767-7468 (voice)
(800) 877-8339 (TTY)
Additionally, the Department of Justice can file cases involving a pattern of
practice of discrimination. The Fair Housing Act may also be enforced though
private lawsuits.
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61
62
63
Rehabilitation Act
The Rehabilitation Act prohibits discrimination on the basis of disability in
programs conducted by Federal agencies, in programs receiving Federal
financial assistance, in Federal employment, and in the employment practices of
Federal contractors. The standards for determining employment discrimination
under the Rehabilitation Act are the same as those used in title I of the
Americans with Disabilities Act.
Section 501
Section 501 requires affirmative action and nondiscrimination in
employment by Federal agencies of the executive branch. To obtain more
information or to file a compliant, employees should contact their agencys Equal
Employment Opportunity Office.
Section 503
Section 503 requires affirmative action and prohibits employment
discrimination by Federal government contractors and subcontractors with
contracts of more than $10,000. For more information on section 503, contact:
Office of Federal Contracts Compliance Programs
U.S. Department of Labor
200 Constitution Avenue, NW
Washington, D.C. 20210
www.dol.gov/dol/esa/public/ofcp-org.htm
(202) 693-0106 (voice/relay)
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65
66
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Statute Citations
29 U.S.C. 794
Over 20 Implementing Regulations for federally assisted programs, including:
34 CRF Part 104 (Department of Education)
45 CFR Part 84 (Department of Health and Human Services)
28 CFR 42.501 et seq.
Over 95 Implementing Regulations for federally conduced programs, including:
28 CFR Part 39 (Department of Justice)
Section 508 of the Rehabilitation Act of 1973, as amended
29 U.S.C 794d
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Employers with 25 or more employees must comply effective July 26, 1992.
Employers with 15-24 employees must comply effective July 26, 1994.
Regulations are due from the US Equal Employment Opportunity Commission
by July 26, 1991.
Transportation
Public Bus Systems
New rail vehicles ordered on or after August 26, 1990 must be accessible.
Existing rail systems must have one accessible car per train by July 26, 1995.
New rail stations must be accessible. As with new bus stations, alterations to
existing rail stations must be made in an accessible manner.
Existing key stations in rapid rail, commuter rail and light rail systems must be
made accessible by July 26, 1992 unless an extension of up to 20 years is
granted (30 years, in some cases, for rapid and light rail).
Existing intercity rail stations (Amtrak) must be accessible by July 26, 2010.
Individuals may file complaints with the US Department of Transportation or
bring private lawsuits.
New over-the-road buses ordered on or after July 26, 1996 (July 26, 1997 for
small companies) must be accessible. After completion of a study the
President may extend the deadline by one year, if appropriate.
Other new vehicles, such as vans, must be accessible, unless the
transportation company provides service to individuals with disabilities that is
equivalent to that operated for the general public.
Individuals may file complaints with the US Attorney General or bring private
lawsuits under the public accommodations procedures.
The ADA requirements for privately operated bus and van companies becomes
effective on:
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Public Accommodations
Telecommunications
All of the above information is available from the US Department of Justice in the
following accessible formats: Braille, large print, audiotape, and electronic file on
computer disk and electronic bulletin board. The electronic bulletin board phone
number is (202) 514-6193.
The information on this Fact Sheet is taken from two US Department of Justice
documents: ADA Requirements Fact Sheet and ADA Statutory Deadlines.
These documents are available at no cost from:
US Department of Justice
Civil Rights Division
Coordination and Review Section
P.O. Box 66118
Washington, DC 20035-6118
Phone: 11:00 A.M. 4:00 P.M. Eastern Time
(202) 514-0301 (voice)
(202) 514-0381 (TDD)
(202) 514-0383 (TDD)
For additional information and answers to questions, contact the US Department
of Justice at the address and telephone numbers above. Copies of the full 90page Americans with Disabilities Act of 1990 may be obtained, at no cost, from:
US Senate Subcommittee on Disability Policy
113 Senate Hart Office Building
Washington, DC 20510
Phone:(202) 224-6265 (voice)
(202) 224-3457 (TDD)
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*David M. Capozzi is the Director of the Office of Technical and Information Services for the U.S. Architectural and
Transportation Barriers Compliance Board. He has testified in support of the Americans with Disabilities Act (ADA) before
the House Committee on Public Works and Transportation and was a member of the ADA legal team for the disability
community that helped craft the legislative history and the final bill. As a member of a Federal Advisory Committee, he
also helped negotiate regulations to implement the Air Carrier Access Act of 1986.
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education, you can fight the decision. The easiest way to resolve a dispute like
this is for you and your parents to request a meeting with the IEP team, then try
to work out a compromise. If the school staff wont budge you can request a due
process hearing. During a due process hearing, both you and the school are
given the chance to present your side of the story before an impartial hearing
officer. You can bring witnesses (doctors, teachers, therapists), show the
hearing officer medical records, hire a lawyer to argue your case, or otherwise try
to convince the hearing officer that you need the educational program you are
requesting. After both you and the school have presented your side, the hearing
officer will decide which side has the stronger case. To request a due process
hearing, one of your parents can send a letter to you school districts Special
Education Director, briefly explaining the nature of the dispute.
The ADA (Americans with Disabilities Act)
After the IDEA, the Americans with Disabilities Act of 1990 is probably the single
most important piece of disability legislation ever passed. Its purpose is to knock
down virtually all remaining barriers that prevent people with disabilities from
participating fully in their communities. There are provisions aimed at eliminating
discrimination in employment, public accommodations, telecommunications,
and public transportation. Briefly, this is what these provisions cover:
Employment
As of July 26, 1992, companies with 25 or more employees are prohibited from
discriminating against qualified individuals with disabilities. As of July 26, 1994,
companies with 15 or more employees may not discriminate. This means that if
you are qualified to do a particular job, an employer cannot refuse to hire you,
train you, or give you a promotion simply because you have a disability.
Furthermore, employers are required to make reasonable accommodation to
permit you to do the job properly, unless it would cause them undue hardship.
Reasonable accommodation means taking steps to remove barriers that make
it difficult or impossible for you to do the job. Reasonable accommodation might
include making the workplace more accessible to you, modifying office
equipment so you can use it, changing some job responsibilities that require
more physical strength or agility than you have, or providing an interpreter.
Public Accommodations
This provision of the ADA prohibits discrimination by any business or facility that
is open to the general public. Restaurants, hotels, theaters, parks, grocery
stores, health clubs, hospitals, shopping centers, museums, bowling alleys
almost any business you can think of must be open to individuals with
disabilities under the same terms as they are open to individuals without
disabilities. For example, a health club could not bar you from joining just
because its locker room is not wheelchair accessible. (Instead, it might have to
make the locker room accessible.) Or a restaurant could not refuse to let you
use its dance floor because they think your wheelchair might get in the way of
other dancers. Unless it would impose an unreasonable cost, every business
that is open to the public must allow people with disabilities to use their facilities
on an equal footing with others.
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Telecommunications
By July 26, 1993, all telecommunications companies must make their services
accessible to individuals with speech or hearing impairments. What this boils
down to is that people who use a Telecommunications Device for the Deaf (TDD)
must be able to communicate via telephone with people who do not have a TDD.
The telecommunications companies will accomplish this via relay services. In
addition, people with disabilities will not be charged any more to use
telecommunications systems than people without disabilities.
Public Transportation
This provision of the ADA is designed to ensure that all types of public
transportation will be accessible to people with disabilities. As of August 26,
1990, public bus and rail systems cannot buy new vehicles unless they are
accessible. (Unfortunately, public school buses can still segregate students with
disabilities from able-bodied students. We expect people with disabilities to enter
mainstream society as adults, yet we still separate them on school buses as
children and young adults. It doesnt make much sense.)
Making the ADA Work for You
The ADA is still relatively new, so it is difficult to tell how successful this law will
be in creating a barrier-free society. In the meantime, whats the best way to use
the ADA when you run up against a barrier? Mr. Capozzi suggests that you first
make the manager or other person in charge aware of your problem in a
nonthreatening way. For example, if there are steps leading into a restaurant
where a ramp could easily be installed, politely tell the manager that this is a
problem for people in wheelchairs. Second, tell him or her about the ADA.
Explain that it is good business practice to make his restaurant accessible,
because you and your family would like to spend your money here. And by not
having a ramp, his business is excluding 43 million people with disabilities who
could potentially be customers. Tell the manager that it is the right thing to do.
You could also let him know that there are tax incentives for businesses that
make themselves more accessible. As of 1992, a business that removes barriers
to comply with the ADA can take a tax deduction of up to $15,000 a year.
A number of agencies in the federal government can answer specific questions
about the provisions of the ADA.
The Rehabilitation Act of 1973
Before the ADA was passed, discrimination against individuals with disabilities
was only outlawed in certain instances. For example, section 504 of the
Rehabilitation Act of 1973 prohibited discrimination by federally funded programs
only. This law is still in effect. It requires that any program or activity that
receives federal funds make itself accessible so that people with disabilities can
participate. Federally funded agencies include not only federal agencies, but
also many job-training programs, schools and universities, transportation
systems, recreation programs, and housing programs.
77
This law will become increasingly important to you as you graduate from high
school and move on to college. For example, if a college class you are
scheduled to take is on the second floor, but there is no elevator, the school must
make the classroom accessible either by moving the class downstairs or by
installing some type of lift.
Air Carrier Access Act of 1986
This Act states in general that airlines may not discriminate against people with
disabilities. In 1990, more specific regulations were created to give airlines and
people with disabilities guidance. Now airlines cannot require a passenger with a
disability to travel with an attendant. In addition, passengers with folding
wheelchairs must be permitted to store them on board in the coat closet. If you
do encounter a problem while traveling by plane, ask for the complaint resolution
official with the airline for help resolving the problem. If you are still dissatisfied,
you can file a formal complaint with the Department of Transportation. The
address for Air Carrier Access Act complaints is: Consumer Affairs Department,
U.S. Department of Transportation, 400 7th St., S.W., Washington, DC 20590.
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Q. If the health insurance offered by my employer does not cover all of the
medical expenses related to my disability, does the company have to
obtain additional coverage for me?
A. No. The ADA only requires that an employer provide employees with
disabilities equal access to whatever health insurance coverage is offered to
other employees.
Q. I think I was discriminated against because my wife is disabled. Can I
file a charge with the EEOC?
A. Yes. The ADA makes it unlawful to discriminate against an individual,
whether disabled or not, because of a relationship or association with an
individual with a known disability.
Q. Are people with AIDS covered by the ADA?
A. Yes. The legislative history indicates that Congress intended the ADA to
protect persons with AIDS and HIV disease from discrimination.
Reproduced from The Americans with Disabilities Act: Your Employment Rights as an Individual with a Disability:, U.S.
Equal
Employment Opportunity Commission.
80
Activity B:
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If the student does not attend, the public agency shall take other steps to ensure
that the students preferences and interests are considered; and
If an agency invited to send a representative to a meeting does not do so, the
public agency shall take other steps to obtain the participation of any other
agency in the planning of an transition services.
IN CONNECTICUT LEGISLATION REQUIRES THAT INTEGRATING
TRANSITION GOALS AND ACTIVITIES IN THE IEP/ITP BEGIN NO LATER
THAN AT THE ANNUAL REVIEW MEETING FOLLOWING A CHILDS
FIFTEENTH BIRTHDAY, THEREFORE CONNECTICUT LAW WILL
SUPERSEDE THE FEDERAL AGE REQUIREMENT OF SIXTEEN. HOWEVER,
IF IT IS DEEMED APPROPRIATE, TRANSITION GOALS AND ACTIVITIES
SHOULD BE DEVELOPED AT AGE FOURTEEN OR YOUNGER.
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education shall inform the parent or guardian of such child of the laws relating to
special education.
Section 2. This act shall take effect July 1, 1987.
Amendments to this Act, published in the February 1992, Connecticut Education
Laws, and incorporated federal transition requirements as defined in the P.L.
101-476 The Individuals with Disabilities Education Act (IDEA).
Connecticut law has also incorporated the federal definition of transition
services as specified in IDEA:
Transition services means a coordinated set of activities for a student, designed
within an outcome oriented process, which promotes movement from school to
post-school activities, including post-secondary education, vocational training,
integrated employment (including supported
employment, continuing and adult education, adult services,
independent living, or community participation.
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Activity B:
86
Determinations of Eligibility
A. Eligibility Criteria (See Connecticuts rules for Order of Selection)
The individual meets the definition of an individual with a disability, i.e.,
an
individual who has a physical or mental impairment which constitutes or
results
in a substantial impediment to employment and can benefit in terms of an
employment outcome from vocational rehabilitation services, and
The individual requires vocational rehabilitation services to prepare for,
enter,
engage in, or retain gainful employment.
87
D. Presumption of Benefits
E. Timelines
The state agency must make eligibility determinations:
88
89
Developed by Karen Palma-Halliday, Transition Coordinator, Connecticut Department of Education, Bureau of Special
Education and Pupil Services. Reprinted with permission.
90
ORDER OF SELECTION
Order of Selection establishes the priority ranking by which eligible
individuals are to be served in the event that case service funds are insufficient to
meet the needs of all eligible individuals. All eligible individuals determined to
have the most severe disabilities will receive the highest priority for services.
(For a complete copy of the rules for Order of Selection, contact the Bureau of
Rehabilitation Services at 298-2000.)
Policy
1. Individuals with disabilities shall be served in the following order of priority:
i. All eligible individuals determined to have a most severe disability.
ii. All eligible individuals determined to have a severe disability.
iii. All other eligible individuals.
2. All individuals shall be placed in the highest priority level for which they
qualify.
3. Every individual within a higher priority level shall be served before individuals
in the next lowest priority level are served.
4. Should funds become limited, the agency may need to limit services within a
priority group. If this becomes necessary, services will be provided first to
public safety officers in that group. The remaining individuals will be served
chronologically on the basis of the date of eligibility determination (or, when
applicable, the date of certification for established evaluation).
5. All eligible individuals, once under an Individualized Written Rehabilitation
Program (IWRP), will continue to receive those services necessary, including
Post Employment Services, until the attainment of their vocational goal and/or
closure of their case.
6. The Bureau will periodically assess its ability to serve eligible individuals
entering the system and declare what level in the Order of Selection the
Bureau has the capacity to serve. All individuals who are in status 10 prior to
June 30, 1994, and who are severely disabled, shall have their Employment
Plans (IWRPs) developed and implemented. Individuals who are determined
eligible on or after July 1, 1994, who are not in a priority group that is being
served, will remain on a waiting list in Status 10 (or such other waiting list
mechanism the Bureau may devise) until such time as the Bureau may be
able to serve them. Individuals who choose not to wait may be closed in
Status 30, Reason 11, did not meet order of selection priority.
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On October 29, 1992, former President George Bush signed into law the
Rehabilitation Act Amendments of 1992 (P.L. 102-569). The new law, which was
enacted following two years of intensive involvement by people with disabilities,
their advocates, and families, is built on the foundation of the Americans with
Disabilities Act (ADA).
John Halliday, Director of the Bureau of Rehabilitation Services in Connecticuts
Dept. of Social Services, said, The Act brings us into a new level of partnership
with individuals with disabilities and organizations as we move the system to its
next phase. Philosophically, there is real meeting between the new Act and the
ADA.
P.L. 102-569 begins with a new section, which lays out the purpose and policy
intent of the Act. This section states in part, Disability is part of the human
experiences and is no way diminishes the right of individuals to live
independently, enjoy self-determination, make choices, contribute to society,
pursue meaningful careers, and enjoy full inclusion and integration in
themainstream of American society[A purpose] of this Act is to empower
individuals with disabilities to maximize employment, economic self-sufficiency,
independence, inclusion and integration into society.
Major changes have been made in both the independent living and employmentoriented sections of the Act. Some key changes in provisions related to
employment are highlighted below.
Presumption of Ability
John Halliday observed, People with disabilities have shown that they can work
and participate in society. Under the new laws, the rehabilitation systems
energies and resources will be focused on the strengths and needs of the
individual and on providing or arranging for necessary services and supports.
The reauthorized Act changes the emphasis in accessing the system from the
old evaluation of rehabilitation potential to an assessment of eligibility and
rehabilitation needs. The law abandons employability and feasibility tests and
focuses instead of serving people with severe disabilities who need rehab
services.
John Halliday said, We should be seeing a much smoother and shorter period of
eligibility determination.
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95
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Reprinted with permission from Tools for Transition: Preparing Students with Learning Disabilities for Secondary
Education, 1991, American Guidance Service, Inc., Circle Pines, MN 55014 by Elizabeth Aune and Jean Ness.
Reproduced by permission of publisher. All rights reserved.
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98
99
100
Reprinted with permission from Learning Disabilities Association of America, 4156 Library Road, Pittsburgh, PA.
101
Activity B:
Activity C:
102
103
Hospital staff may apply to Probate Court to have a Voluntary patient civilly
committed to the hospital. If this is done, it may take up to 15 days before the
Probate hearing date, during which time the person would be required to stay in
the facility. If the hospital does not file for a Probate Court hearing, the individual
must be released within 5 days.
WHAT HAPPENS IF SOMEONE IS PROBATED?
The Probate Judge must give the patient, in writing, a probable cause hearing
within 72 hours.
The hospital must inform the patient 24 hours before they file a commitment
hearing request. Anyone wishing to avoid a civil commitment hearing must sign
back in as a Voluntary patient and revoke their 5 day paper request before
the actual Probate hearing date.
IS A VOLUNTARY PATIENT REQUIRED TO TAKE THE MEDICATIONS OR
TREATMENT GIVEN OR PRESCRIBED?
Legally, a Voluntary patient cannot have treatment or medication forced upon
him or herself. Psycho-surgery (e.g., lobotomies) or Shock treatments cannot
be given without written informed consent. As of October 1, 1993, a voluntary
patient can be forced to take medication or treatment if found either to be: 1)
incompetent by 2 physicians and the head of the hospital; or 2) at a significant
risk of harm. The hospital must either file a petition in Probate Court for a court
order to medicate you or hold an internal hearing. This change in the law is
important and too complex to explain further. If you have any questions or
concerns, you should call an advocate immediately.
WHAT IS AN EMERGENCY PATIENT?
An emergency patient is one whom a physician has concluded is dangerous to
his or herself or others or gravely disabled.
If someone is admitted as an Emergency Patient, a psychiatrist must evaluate
that person within 48 hours of being admitted to a facility. That person may be
kept up to 15 days without a court ordered decision. They may be kept in the
hospital an additional 15 days if the hospital has applied for an involuntary
commitment hearing.
An emergency patient cannot be held longer than 30 days if she/he has not been
committed by the Probate Court.
WHAT IF THE PATIENT DISPUTES THE DECISION TO BE AN EMERGENCY
PATIENT?
The patient or an Advocate representative may request, in writing, a Probable
Cause Hearing. This is sent to the Probate Court serving the town where the
hospital is located. The hearing must be held within 72 hours from when the
Court has received this request.
The patient has the right to cross examine witnesses and to be represented by
an attorney.
An outside doctor who the patient chooses may also be called in to testify.
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Reprinted with permission from Self Advocacy: A resource and Training Manual for Mental Health Consumers, Expatients and Psychiatric Survivors, Connecticut Self Advocates for Mental Health, Inc.
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107
108
109
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These laws are complex. They may be difficult to understand and apply.
There are a number of legal resources available to you for free
consultation. All requests and information is confidential.
PAIMI Protection and Advocacy for Individuals with Mental Illness
Office of Protection and Advocacy for Persons with Disabilities
60-B West Street, Hartford, CT 06120
Phone: 297-4300; 1-800-842-7303; TDD 566-2102
Connecticut Bar Association
101 Corporate Place
Rocky Hill, CT 06067
Phone: 721-0025
Legal Aid Society of Hartford County, Inc.
80 Jefferson Street
Hartford, CT 06106
Phone: 541-5000; TDD 541-5069
Connecticut Legal Services
P.O. Box 841
Middletown, CT 06457
Phone: 344-0447
Reprinted with permission from Self Advocacy: A Resource and Training Manual for Mental Health Consumers, Expatients and Psychiatric Survivors, Connecticut Self Advocates for Mental Health, Inc.
112
SAMPLE
John Doe
1 State Street
Hartford, CT 06111
Phone: 555-1000
Reprinted with permission from Self Advocacy: A Resource and Training Manual for Mental Health Consumers, Expatients and Psychiatric Survivors, Connecticut Self Advocates for Mental Health, Inc.
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115
Activity A:
Activity B:
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118
119
David Flower is a graduate student in Educational Psychology and a law student at the University of Minnesota,
Minneapolis. Reprinted with permission from IMPACT, Institute on Community Integration, College of Education,
University of Minnesota, Volume 6(4), Winter 1993/94.
120
VOTING
Objective:
Activity A:
Activity B:
Activity C:
Activity D:
Have a student call your city or county clerk for voter registration
information, and ask about rules for helping a voter read the ballot.
The student can report this information back to the class.
Activity E:
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Activity F:
These activities were taken from the flier Voting: Preparing for Citizenship: A guide for the Teacher and Citizen
Advocate, The ARC National Headquarters, Arlington, Texas, 1988.
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VOTING
WHAT IS VOTING?
Voting means making choices. Citizens of the United States must choose which
people they want to make decisions for them. Obviously, we cant all go to
Washington to run our own government. We cant all go to city hall to make
decisions for ourselves. For that reason, we vote. We choose people to decide
for us. This is a big, important job. We must choose well. We want to be happy
with our choices. We make choices that will affect the whole United States.
Voting is a serious responsibility.
United States citizens vote by marking ballots. Ballots are pieces of paper with
the choices listed on them. Some people use voting machines to mark their
ballots.
WHO CAN VOTE?
In the United States, citizens 18 and over can vote.
Where you born in the United States?
Are your parents citizens? Or
Did you take a test to become a citizen?
If you answered yes to one of these questions, then you are a citizen, and you
can vote.
WHAT IS A CITIZEN?
A citizen is a person who lives in a country and enjoys its privileges. A good
citizen is concerned about his country. A United States citizen enjoys special
freedoms.
What do you have to do to enjoy freedom? Citizens have duties. Some of the
duties of United States citizens are:
Citizens are expected to obey the laws.
If they dont like the laws, they can vote to change them.
Citizens over age 18 are expected to vote.
Any citizen of the United States 18 years old or older can vote.
HOW AND WHEN CAN I VOTE?
All states require voters to register. To find out how and when to register to vote,
call the city or county clerk or the League of Women Voters, listed in the
telephone directory. Also, the National Organization on Disability will help you.
Call it at (202) 293-5960, TDD (202) 293-5968. When you call the city or county
clerk, ask them whether they will allow someone to help you read the ballot. Ask
them also whether they will allow you to register by mail.
National elections take place every two years. Members of Congress and onethird of the Senators are elected then. The President is elected every four years.
The date for national elections is always on the first Tuesday after the first
Monday in November.
123
VOTING (CONTINUED)
Some cities have chosen to hold their elections at other times. You can ask the
city clerk about your particular city.
WHO CAN HELP ME IF I DECIDE TO VOTE?
Your teacher is a good person to ask for help.
A parent is also often eager to help.
Who takes you to the doctor? Maybe that person is the one to ask.
Neighbors or friends sometimes help.
Call the League of Women Voters for help. It is an organization that helps
people
vote. It is listed in the pone book.
Get some phone numbers to call for a ride at the last minute, in case your helper
cant take you to vote.
WHAT IF I CANT READ VERY WELL?
Ballots are often hard to read. However, most polling places will let you take
someone with you to read for you.
HOW CAN I DECIDE ON MY CHOICES?
Voting requires some study. Sometimes you will vote on new laws for your
community. Other elections are about choosing the right people as leaders. You
may need some help making your decisions. There are many places to get help.
Dont forget that every citizen must make his/her own choices. Another person
cannot make you vote for something or someone you dont like.
Here are some ways you can learn whom and what you want to vote for.
Talk to teachers, parents, friends and neighbors about their choices.
Listen to television and radio news.
Look at the people running for office (called candidates).
Listen to what they say.
Keep a notebook about voting and candidates.
REMEMBER: CITIZENS VOTE TO KEEP THEIR FREEDOM. VOTING IS A
SERIOUS DUTY AND PRIVILEGE. ASK SOMEONE TO HELP YOU TO
PREPARE TO VOTE.
Developed through grant #88-CB-CX-0024 of the Commission on the Bicentennial of the United States Constitution. The
opinions, findings, and conclusions expressed in this publication are those of The Arc and do not necessarily reflect the
views of the commission on the Bicentennial of the United States Constitution, an agency of the federal government.
Support for the project was also provided by the Crown Development Trust Fund, Inc., Zeta Tau Alpha Fraternity.
124
Activity A:
Activity B:
125
Call Waiting
Call forwarding
Three way calling
126
ADDITIONAL RESOURCES
Developmental Disability Councils
Protection and Advocacy
University Centers for Excellence
Parent Training and Information
Centers
NICHCY
Central Directory of Resources
127
129
130
131
are unique, have value and must be afforded dignity and respect
can contribute to family and society ("contribution"), provided the
necessary services and supports ("no more and no less than what is
needed")
can lead self-determined lives when given freedom, responsibility, support
and control over their lives ("self-determination," "family support")
have the right to participate fully in developing the unique services and
supports that allow them to pursue their dreams, hopes and desires
("person-centered planning")
can benefit from the on-going support of family and friends ("circle of
supports")
have a right to the same life choices as others ("dignity of risk")
have a right to be safe and free from harm
can, with support, participate fully in society ("full citizenship") and should
not be expected to earn that right by progressing through a "continuum of
care"
must have ready access to vital services and supports, including
accessible transportation, affordable housing and health care, competitive
work, inclusive recreation and leisure opportunities, and specialized
services, as well as those services generally available to all who reside in
a community
have the right to belong to and be included in all aspects of society
("community inclusion") while retaining their own cultural and ethnic
heritage ("cultural competence")
benefit from inclusive communities, just as society benefits ("mutual
interdependence") from the contributions and economic productivity of
those with disabilities
ADD network partners. The DD Act (PL 106-402) provides the DD Council with
two partners, 1) the protection and advocacy system: The NC Governor's
Advocacy Council for Persons with Disabilities; and 2) Centers for Excellence in
Developmental Disability Research, Education and Service: In NC, the Center for
Development and Learning. Together, these three agencies make up North
Carolina's "Administration on Developmental Disabilities (ADD) Network." Our
state ADD network is administered through the Region IV Administration on
Children and Families ADD office in Atlanta: telephone: 404-562-2911.
The Governor's Advocacy Council for Persons with Disabilities (GACPD) is
charged with protecting the legal and human rights of people with developmental
and other disabilities. Its address is 2113 Cameron Street, Suite 218, Raleigh,
NC 27605-1275. The toll-free number for GACPD is 1-800-821-6922. The
GACPD Website is http://www.doa.state.nc.us/doa/gacpd/gacpd.htm.
The Center for Development and Learning (CDL) is charged with 1) the
preparation of students, fellows and other leadership personnel; 2) community
training and technical assistance for or with people with developmental
disabilities, professionals, paraprofessionals, students and volunteers; and 3)
dissemination of information and research findings. The address for the CDL is
Campus Box 7255, University of North Carolina, Chapel Hill, NC 27599-7255. Its
Website is http://cdl.unch.unc.edu.
State partners. The Council has many partners. Some are represented on the
Council itself: people with developmental disabilities or family members of people
with developmental disabilities; the public at large; non-governmental agencies;
local governmental agencies; the Office of the Secretary of the Department of
Health and Human Services (DHHS); the NC General Assembly; the Division of
Mental Health, Developmental Disabilities, and Substance Abuse; the Division of
Aging; the Department of Public Instruction, Division of Exceptional Children; the
Division of Social Services; the Division of Vocational Rehabilitation; the Division
of Medical Assistance; the Division of Maternal and Child Health; and the
Department of Corrections, Mental Health and Psychological Services.
The Council is a member of numerous advisories, task forces, committees,
councils, and consortia, including the NC Developmental Disabilities Consortium
and the Coalition 2001.
Becoming part of the DD Council family. The 32 members of the DD Council
are appointed by the governor and serve on a voluntary basis. Each year, the
Council advertises for new members, who serve a four-year term. We review all
applications and make recommendations to the governor for his consideration.
The Council holds public meetings four times a year and welcomes guests. Each
meeting closes with a "public comment" period. If you are a person with a
disability and would like to attend a meeting, please let us know in advance of
any accommodation you may require.
133
134
ARIZONA
STATE COUNCILS ON DD
Alabama State Council for DD
RSA Union Building
Halcyon
Post Office Box 301410
Montgomery, AL 36130-1410
Phone: (334) 242-3973
Toll Free: (800) 846-3735
FAX: (334) 242-0797
Web Page: http://www.acdd.org
Executive Director:
Sheryl Matney
E-Mail: [email protected]
Chair: Elizabeth Prince
E-Mail: [email protected]
STATE COUNCILS ON DD
Governor's Council on
Developmental Disabilities
1717 West Jefferson Street
Rm. 112, Site Code 074Z
Phoenix, AZ 85007
Phone: (602) 542-4049
FAX: (602) 542-5320
Executive Director:
Michael Ward
E-Mail: [email protected]
Chair: Josephine Frampton
E-Mail: [email protected]
ALASKA
STATE COUNCILS ON DD
Governor's Council on Disabilities
And Special Education
3601 C Street, Suite 740 (physical
address)
P.O. Box 240249 (mailing address)
Anchorage, AK 99524-0249
Phone: (907) 269-8990
FAX: (907) 269-8995
Executive Director:
David Maltman
E-Mail:
[email protected]
Chair: Marie Simmons
E-Mail:
[email protected]
AMERICAN SAMOA
STATE COUNCILS ON DD
American Samoa
Developmental Disabilities Council
P.O. Box 194
Pago Pago, AS 96799
Phone: (011-684) 633-5908
FAX: (011-684) 633-2919
E-Mail: [email protected]
Executive Director:
Henry Sesepasara
Chair: Lu Tagisia Faumuina
ARKANSAS
STATE COUNCILS ON DD
Governor's Developmental
Disabilities
Planning Council
Freeway Medical Tower
5800 West 10th, Suite 805
Little Rock, AR 72204
Phone: (501) 661-2589
TDD: (501) 661-2736
FAX: (501) 661-2399
Executive Director:
Wilma Stewart
E-Mail:
[email protected]
Chair:
Terrell Tebbetts
E-Mail: [email protected]
CALIFORNIA
STATE COUNCILS ON DD
California State Council on
Developmental Disabilities
2000 "O" Street, Suite 100
Sacramento, CA 95814
Phone: (916) 322-8481
TDD: (916) 324-8420
FAX: (916) 443-4957
Executive Director:
Judy McDonald
E-Mail: [email protected]
Chair: Martin Appel
135
COLORADO
STATE COUNCILS ON DD
Colorado Developmental Disabilities
Planning Council
Stapleton Plaza Office Center
3333 Quebec St., Suite 6009
Denver, CO 80207
Web Page:
http://[email protected]
Phone: (720) 941-0176
FAX: (720) 941-8490
Acting Director: Marcia Tewell
Phone: (720) 941-1809
COMMONWEALTH OF
THE NORTHERN
MARIANA ISLANDS
STATE COUNCILS ON DD
CNMI Governor's Developmental
Disabilities Council
P.O. Box 2565
U.S. Northern Marianas
Saipan, MP 96950-2565
Phone: (670) 664-7000
TDD: (670) 322-3014
FAX: (670) 664-7030
E-Mail: [email protected]
Web Page:
http://www.cnmiddcouncil.org
Executive Director:
Thomas J. Camacho
E-Mail:
[email protected]
Chair: Lydia M. Sablan
CONNECTICUT
STATE COUNCILS ON DD
Connecticut Council on
Developmental Disabilities
460 Capitol Avenue
Hartford, CT 06106-1308
Phone: (860) 418-6160
TTY: (860) 418-6172
Toll Free: (800) 653-1134
FAX: (860) 418-6003
Web Page:
http://www.state.ct.us/ctcdd/
E-Mail: [email protected]
DELAWARE
STATE COUNCILS ON DD
State of Delaware
Developmental Disabilities Council
Margaret M. O'Neill Building, 2nd
Floor
410 Federal Street, Suite 2 Dover,
DE 19901
Phone: (302) 739-3333
Toll Free: (800) 273-9500 (Out-ofstate)
Toll Free TDD: (800) 464-HELP (Instate)
FAX: (302) 739-2015
Executive. Director:
Sandy Reyes
E-Mail: [email protected]
Chair: Larry Henderson
E-Mail: [email protected]
WASHINGTON, DC
STATE COUNCILS ON DD
D.C. DD Council
St. Elizabeth Campus
2700 Martin Luther King Ave. SE,
Building 801 East, Room 1301
Washington, D.C. 20032
Phone: (202) 279-6085
TDD: (202) 279-6089
FAX: (202) 279-6090
Acting Director:
Mary Brown
E-Mail: [email protected]
Chair: Florence Blair
GOV'T OF FEDERATED
STATES OF MICRONESIA
STATE COUNCILS ON DD
Gov't of Federated States
of Micronesia
Department of Education
Palikir, Pohnpei, FM 96941
Phone: (691) 320-2609
FAX: (691) 320-5500
Executive Director: Yosiro Suta
136
HAWAII
FLORIDA
STATE COUNCILS ON DD
Hawaii State Planning Council
on Developmental Disabilities
919 Ala Moana Blvd., Ste #113
Honolulu, HI 96814
Phone: (808) 586-8100
FAX: (808) 586-7543
E-Mail: [email protected]
Executive Director: Diana C. Tizard
Chair: David Woll
E-Mail: [email protected]
STATE COUNCILS ON DD
Florida DD Council
124 Marriott Drive, Suite 203
Tallahassee, FL 32301-2981
Phone: (850) 488-4180
TDD: (850) 488-0956
Toll Free: (800) 580-7801
FAX: (850) 922-6702
Web Page: http://www.fddc.org
Executive Director:
Joseph Krieger
E-Mail: [email protected]
Chair: Linda Merrell
GEORGIA
STATE COUNCILS ON DD
Governor's Council on
Developmental Disabilities for
Georgia
2 Peachtree St., NW, #3-210
Atlanta, GA 30303
Phone: (404) 657-2126
TDD: (404) 657-2133
FAX: (404) 657-2132
Web Page: http://www.gaddcouncil.org
Executive Director:
Eric E. Jacobson
E-Mail: [email protected]
Chair: Lynette Bragg
E-mail:
[email protected]
GUAM
STATE COUNCILS ON DD
Guam DD Council
104 E Street
Tiyan, GU 96913
Phone: (671) 475-9127
FAX: (671) 475-9128
E-Mail: [email protected]
Executive Director:
Rodney Priest
E-Mail: [email protected]
Chair: Heidi San Nicolas
E-Mail: [email protected]
IDAHO
STATE COUNCILS ON DD Idaho
State Council on
Developmental Disabilities
802 W. Bannock St., Suite 308
Boise, ID 83702-0280
Phone: (208) 334-2179
TDD: (208) 334-2179
Toll Free:(800) 544-2433 (Idaho
only)
FAX: (208) 334-3417
Web Page:
http://www2.state.id.us/icdd/
E-Mail: [email protected]
Executive Director, Marilyn Sword
E-Mail: [email protected]
Chair: Kathy Gneiting
E-Mail: [email protected]
ILLINOIS
STATE COUNCILS ON DD
Illinois Council on Developmental
Disabilities
830 S. Spring Street
Springfield, IL 62704
Illinois Council on Developmental
Disabilities
100 W Randolph, Suite 10-600
Chicago, IL 60601
Phone: (217) 782-9696
FAX: (217) 524-5339
Executive Director: Sheila Romano
E-Mail: [email protected]
Chair: Jill Garrett
E-Mail:
[email protected]
137
INDIANA
STATE COUNCILS ON DD
Governor's Council for People with
Disabilities
43 W. Market Street
Harrison Building, Suite 404
Indianapolis, IN 46204
Phone: (317) 232-7770
FAX: (317) 233-3712
Executive Director: Suellen JacksonBoner
E-Mail: [email protected]
Chair: Gary Miller, Ph.D.
IOWA
STATE COUNCILS ON DD
Governor's DD Council
617 E. Second Street
Des Moines, IA 50309
Phone: (515) 281-9083
Toll Free: (800) 452-1936
FAX: (515) 281-9087
Executive Director
Becky Maddy Harker
E-Mail: [email protected]
Chair: Bob Bacon
E-Mail: [email protected]
KANSAS
STATE COUNCILS ON DD
Kansas Council on Developmental
Disabilities
Docking State Office Bldg.
915 S.W. Harrison, Room 141
Topeka, KS 66612-1570
Phone: (785) 296-2608
FAX: (785) 296-2861
Web Page:
http://www.nekesc.org/kids/kcdd.html
Executive Director: Jane Rhys, Ph.D.
E-Mail: [email protected]
Chair: Dave Hederstedt
E-Mail:
[email protected]
KENTUCKY
STATE COUNCILS ON DD
Kentucky Developmental Disabilities
Council
100 Fair Oaks Lane, 4th FL.
Frankfort, KY 40621-0001
Phone: (502) 564-7841
Toll Free: (877) 367-5332
FAX: (502) 564-5478
Executive Director: Pat Sybold
E-Mail: [email protected]
Chair: Veronica Brown
E-Mail: [email protected]
LOUISIANA
STATE COUNCILS ON DD
Louisiana State Planning Council
on Developmental Disabilities
200 Lafayette St., Suite 404
Baton Rouge, LA 70821-3455
Phone: (225) 342-6804
FAX: (225) 342-1970
Executive. Director:
Sandee Winchell
E-Mail: [email protected]
Chair: Mike Vasko
E-Mail: [email protected]
MAINE
STATE COUNCILS ON DD
Maine DD Council
Togus Ctr. Bldg. 205 Room 313
139 State House Station
Nash Building
Augusta, ME 04333-0139
Phone: (207) 287-4213
FAX: (207) 287-8001
Executive Director: Peter R. Stowell
E-Mail: [email protected]
Chair: James Meehan
E-Mail: [email protected]
MARYLAND
STATE COUNCILS ON DD
Maryland DD Council
One Market Center, Box 10
300 West Lexington Street
Baltimore, MD 21201-2323
Phone: (410) 333-3688
FAX: (410) 333-3686
E-Mail: [email protected]
Acting Director: Cathy Lyle
Chair: Jackie Golden
138
MASSACHUSETTS
E-Mail: [email protected]
STATE COUNCILS ON DD
Massachusetts DD Council
174 Portland Street, 5th Floor
Boston, MA 02114
Phone: (617) 727-6374 - ext.108
TDD: (617) 727-1885
FAX: (617) 727-1174
Web Page:
http://www.state.ma.us/mddc/
Executive Director:
Daniel M. Shannon
E-Mail: [email protected]
Chair: Thomas Healy
MISSISSIPPI
MICHIGAN
MISSOURI
STATE COUNCILS ON DD
Michigan D.D. Council
Lewis Cass Building 6th Floor
Lansing, MI 48913
Mailing Federal Express, UPS
etc. use zip code - 48933
Regular mail use zip - 48913
Phone: (517) 334-6769/7240
TDD: (517) 334-7354
FAX: (517) 334-7353
Executive Director: Vendella Collins
E-Mail: [email protected]
Chair: Karla L. Kirkland
E-Mail: [email protected]
MINNESOTA
STATE COUNCILS ON DD
Governor's Council on Dev.
Disabilities Minnesota Dept. of
Administration
370 Centennial Office Building
658 Cedar Street
St. Paul, MN 55155
Phone: (651) 296-4018
Toll Free (877) 348-0505
TDD: (651) 296-9962
FAX: (651) 297-7200
E-Mail: [email protected]
Web Page: http://www.mnddc.org
Executive Director: Colleen Wieck,
Ph.D
E-Mail: [email protected]
Chair: Jackie Mlynarczyk
STATE COUNCILS ON DD
Developmental Disabilities Council
1101 Robert E. Lee Building
239 North Lamar Street
Jackson, MS 39201
Phone: (601) 359-1270
TDD: (601) 359-6230
FAX: (601) 359-6295
Executive Director:
Edwin L. Butler
E-Mail: [email protected]
Chair: DR.Jane Taylor
STATE COUNCILS ON DD
Missouri Council for Developmental
Disabilities
P.O. Box 687
1706 E. Elm Street
Jefferson City, MO 65102
Phone: (573) 751-8611
TDD: (573) 751-8611
Toll Free: (800) 500-7878
FAX: (573) 526-2755
Web page:
http://www.modmh.state.mo.us/mrdd
/moplan/moplan.html
Executive Director: Kay Conklin
E-Mail: [email protected]
Chair: Neva Thurston
E-Mail: [email protected]
MONTANA
STATE COUNCILS ON DD
Montana DD Planning Council
NADDChes
P.O. Box 526
Helena, MT 59624
Phone: (406) 444-1338
FAX:(406) 444-5999
Executive. Director: Deborah
Swingley
E-Mail: [email protected]
Chair: Othelia Schulz
NEBRASKA
STATE COUNCILS ON DD
139
Governor's Council on DD
301 Centennial Mall, South
P.O. Box 95044
Lincoln, NE 68509-5044
Phone: (402) 471-2330
TDD (402) 471-9570
FAX: (402) 471-0383
E-Mail:
[email protected]
Executive Director: Mary Gordon
E-Mail:
[email protected]
Chair: Linda Walker Gardels
E-Mail: [email protected]
NEVADA
STATE COUNCILS ON DD
Governor's Council on DD
711 S. Stewart Street
Carson City, NV 89710
Phone: (775) 687-4452
TDD: (775) 687-3388
FAX: (775) 687-3292
Executive Director: Ken Vogel
E-Mail: [email protected]
Chair: George Brown
NEW HAMPSHIRE
STATE COUNCILS ON DD
New Hampshire DD Council
The Concord Center, Unit 315
10 Ferry Street
Concord, NH 03301-5004
Phone: (603) 271-3236
Toll Free TDD: (800) 735-2964
FAX: (603) 271-1156
E-Mail: [email protected]
Executive Director: Alan Robichaud
Chair: James Piet
E-Mail: [email protected]
NEW JERSEY
STATE COUNCILS ON DD
New Jersey DD Council
32 West State Street, CN 700
Trenton, NJ 08625-0700
Phone: (609) 292-3745
FAX: (609) 292-7114
E-Mail: [email protected]
Executive Director: Ethan B. Ellis
NEW MEXICO
STATE COUNCILS ON DD
New Mexico DD Council
435 St. Michael's Drive
Building D
Santa Fe, NM 87505
Phone: (505) 827-7590
FAX: (505) 827-7589
Executive Director:
Pat Putnam
E-Mail: [email protected]
Chair: Bob Pasternack, Ph.D.
E-Mail:
[email protected]
NEW YORK
STATE COUNCILS ON DD
New York State DD Council
155 Washington Ave., 2nd. Floor
Albany, NY 12210
Phone: (518) 486-7505
TDD: (518) 486-7505
Toll Free: (800) 395-3372
FAX: (518) 402-3505
Web Page:
http://www.ddpc.state.ny.us
Executive Director: Sheila M. Carey
E-Mail: [email protected]
Chair: Michael J. Mackin
E-Mail: [email protected]
NORTH CAROLINA
STATE COUNCILS ON DD
North Carolina Council on
Developmental Disabilities
1001 Navaho Dr. Suite GL103
Raleigh, NC 27606
Phone: (919) 850-2833
Toll Free: (800) 357-6916
FAX: (919) 733-1863
Web Page: http://www.nc-ddc.org
Executive Director: Holly Riddle
E-Mail: [email protected]
Chair: Bill Morris
E-Mail: [email protected]
140
NORTH DAKOTA
STATE COUNCILS ON DD
State Council on Developmental
Disabilities
ND Dept. of Human Services
600 East Boulevard Avenue
Bismarck, ND 58505-0250
Phone: (701) 328-8953
FAX: (701) 328-8969
E-Mail: [email protected]
Executive Director: Tom Wallner
E-Mail: [email protected]
Chair: Terry Woelber
OHIO
STATE COUNCILS ON DD
Ohio Developmental Disabilities
Planning Council
8 East Long Street, 12th Floor
Columbus, OH 43215
Phone: (614) 466-5205
TDD: (614) 644-5530
FAX: (614) 466-0298
Web Page:
http://www.state.oh.us/ddc/
Executive Director: David Zwyer
E-Mail:
[email protected]
Chair: Stuart Warshauer
E-Mail: [email protected]
OKLAHOMA
STATE COUNCILS ON DD
Oklahoma DD Council
3033 N. Walnut, Suite 105-E
Oklahoma City, OK 73105
Phone: (405) 528-4984
TDD: (405) 528-4984
Toll Free: (800) 836-4470
FAX: (405) 528-0956
Web Page: http://www.okddc.org
E-Mail: [email protected]
Executive Director: Ann Trudgeon
E-Mail: [email protected]
Chair: Oneal Netherland
OREGON
STATE COUNCILS ON DD
Oregon DD Council
540 24th Place, NE
Salem, OR 97301-4517
Phone: (503) 945-9942
Toll Free: (800) 292-4154
FAX: (503) 945-9947
E-Mail: [email protected]
Executive Director: Charlotte Duncan
Chair: Kirby Erickson
E-Mail: [email protected]
PENNSYLVANIA
STATE COUNCILS ON DD
Pennsylvania DD Council
569 Forum Building
Commonwealth Avenue
Harrisburg, PA 17120-0001
Phone: (717) 787-6057
FAX: (717) 772-0738
E-Mail: [email protected]
Executive Director: Graham
Mulholland
E-Mail: [email protected]
Chair: Paul O'Hanlon
PUERTO RICO
STATE COUNCILS ON DD
Puerto Rico DD Council
P.O.Box 9543
Santurce, PR 00908-0543
Phone: (787) 722-0595
FAX: (787) 721-3622
E-Mail: [email protected]
Executive Director:
Ethel M. Torres Arroyo
Chair: Vicente Sanabria Acevedo,
Esq.
RHODE ISLAND
STATE COUNCILS ON DD
Rhode Island DD Council
400 Bald Hill Road
Suite 515
Warwick, RI 02886
Phone: (401) 737-1238
FAX: (401) 737-3395
E-Mail: [email protected]
Web Page: http://www.riddc.org
Executive Director: Marie V. Citrone
E-Mail: [email protected]
141
SOUTH CAROLINA
STATE COUNCILS ON DD
South Carolina DD Council
1205 Pendleton Street, Rm 372
Columbia, SC 29201-3731
Phone: (803) 734-0465
TDD: (803) 734-1147
FAX: (803) 734-0241
Web Page:
http://www.scddc.state.sc.us
Executive Director: Charles B. Lang
Email: [email protected]
Chair: Ms. Mildred Lilley
SOUTH DAKOTA
STATE COUNCILS ON DD
SD Governor's Council on
Developmental Disabilities
Hillsview Plaza, East Hwy 34
c\o 500 East Capitol
Pierre, SD 57501-5070
Phone: (605) 773-6369
TDD: (605) 773-5990
FAX: (605) 773-5483
Executive Director:
Arlene Poncelet
E-Mail: [email protected]
Chair: Nina Jeffrey
TENNESSEE
STATE COUNCILS ON DD
Tennessee DD Council
5th Floor, Cordell Hull Building
426 Fifth Ave. North
Nashville, TN 37243-0675
Phone: (615) 532-6615
TDD: (615) 741-4562
FAX: (615) 532-6964
Executive. Director: Wanda Willis
E-Mail: [email protected]
Chair: Sara Ezell
TEXAS
STATE COUNCILS ON DD
Texas Council for DD
4900 North Lamar Blvd.
Austin, TX 78751-2399
UTAH
STATE COUNCILS ON DD
Utah Governor's Council for
People with Disabilities
555 East 300 South, Suite 201
Salt Lake City, UT 84102
Phone: (801) 325-5820
TDD: (801) 533-4128
FAX: (801) 325-5826
Web Page:
http://www.gcpd.state.ut.us
Interim Director: Alison Lozano
E-Mail: [email protected]
Chair: Rev. Glen Gleaves, Pastor
E-Mail: [email protected]
VERMONT
STATE COUNCILS ON DD
Vermont DD Council
103 South Main Street
Waterbury, VT 05671-0206
Phone: (802) 241-2612
FAX: (802) 241-2989
Web Page:
http://www.ahs.state.vt.us/vtddc/
Executive. Director: Julie Daley
E-Mail: [email protected]
Chair: David Sagi
E-Mail: [email protected]
VIRGINIA
STATE COUNCILS ON DD
VA Board for People with Disabilities
Ninth Street Office Building
202 North 9th Street, 9th Floor
Richmond, VA 23219
Phone: (804) 786-0016
142
WASHINGTON
STATE COUNCILS ON DD
Washington State DD Council
P.O. Box 48314
906 Columbia Street, S.W.
Olympia, WA 98504-8314
Phone: (360) 725-2870
TDD: (800) 634-4473
FAX: (360) 586-2424
Web Page: http://www.wa.gov/ddc
Executive Director: Edward M. Holen
E-Mail: [email protected]
Chair: George Walker
WESTERN CAROLINA
ISLANDS
STATE COUNCILS ON DD
Trust Territories of the Pacific
Trust Terr. Hlth. Cncl.
MacDonald Mem. Hosp. KOROR
Palau, WCI 96940
Executive Director: Dr.Minoru Ueki,
MD
Wisconsin Council on DD
600 Williamson Street
P.O. Box 7851
Madison, WI 53707-7851
Phone: (608) 266-7826
FAX: (608) 267-3906
E-Mail: [email protected]
Web Page: http://www.wcdd.org
Executive Director: Jennifer
Ondrejka
E-Mail: ondrejm@@dhfs.state.wi.us
Chair: James Strachota
E-Mail: [email protected]
WYOMING
STATE COUNCILS ON DD
Wyoming Council on DD
122 West 25th Street
Herschler Bldg., 1st Floor, West
Cheyenne, WY 82002
Phone: (307) 777-7230
TDD: (307) 777-7230
Toll Free: (800) 438-5791 (In-StateOnly)
FAX: (307) 777-5690
Executive Director: Brenda Oswald
E-Mail: [email protected]
Chair: Barbara Weston
E-Mail: [email protected]
WEST VIRGINIA
STATE COUNCILS ON DD
West Virginia DD Council
110 Stockton Street
Charleston, WV 25312-2521
Phone: (304) 558-0416
TDD: (304) 558-2376
FAX: (304) 558-0941
Web Page:
http://www.state.wv.us/ddpc/
Executive Director: Steve Wiseman
E-Mail: [email protected]
Chair: Laura Helems
E-Mail: [email protected]
WISCONSIN
STATE COUNCILS ON DD
143
In addition, P&A systems interact with elected and appointed officials to share
information which will assist policy makers in making legislative and
administrative changes which benefit persons with disabilities.
147
ALABAMA
Alabama Disabilities Advocacy
Program
P.O. Box 870395
Tuscaloosa, AL 35487-0395
Tel: (205) 348-4928
Fax: (205) 348-3909
E-mail: [email protected]
Web page: www.adap.net
David Gamble, Case Advocate
ALASKA
Disability Law Center of Alaska
615 E. 82nd, Suite 101
Anchorage, AK 99518
Tel: (907) 344-1002
Fax: (907) 349-1002
Web page: www.dlack.org
Janel Wright, Staff Attorney
AMERICAN SAMOA
American Samoa P&A
P.O. Box 3937
Pago Pago, AS 96799
Tel: (011-684) 633-2441
Fax: (011-684) 633-7286
Minareta Thompson, Director
ARIZONA
Arizona Center for Disability Law
100 N. Stone Ave., Suite 305
Tucson, AZ 85701
Tel: (520) 327-9547
Fax: (520) 884-0992
E-mail: [email protected]
Web page: www.acdl.com
Leslie Cohen, Executive Director
Arizona Center for Disability Law
3839 N. 3rd Street, Suite 209
Phoenix, AZ 85012
Tel: (602) 274-6287
Fax: (602) 274-6779
E-mail: [email protected]
Dina Lesperance, Coordinator
ARKANSAS
Disability Rights Center, Inc.
1100 N. University #201
Little Rock, AR 72207
Tel: (501) 296-1775
Fax: (501) 296-1779
E-mail: [email protected]
Web page: www.arkdisabilityrights.org
Jan Baker, Attorney
Disability Rights Center, Inc.
Box 38, Suite M416
614 E. Emma Avenue
Springdale, AR 72764
Tel & Fax: (501) 927-1793
E-mail: [email protected]
Edwin V. Gartin, Staff Attorney
CALIFORNIA
Protection and Advocacy Inc.
100 Howe Ave., Suite 235N
Sacramento, CA 95835
Tel: (916) 488-9950
Fax: (916) 488-9960
E-mail: [email protected]
Web page: www.pai-ca.org
Taymour Ravandi, Attorney
COLORADO
The Legal Center
2829 North Avenue, Suite 205
Grand Junction, CO 81501-1501
Tel: (970) 241-6371
Fax: (970) 241-5324
E-mail: [email protected]
Web page: www.thelegalcenter.org
Sara Sharer, Coordinator
The Legal Center
455 Sherman Street, Suite 130
Denver, CO 80203-4403
Tel: (303) 722-0300
Fax: (303) 722-0720
E-mail: [email protected]
Joel Hayes, Staff Attorney
148
CONNECTICUT
FLORIDA
DELAWARE
Community Legal Aid Society, Inc.
Community Services Bldg., Suite 801
100 West 10th Street
Wilmington, DE 19801
Tel: (302) 575-0660
Fax: (302) 575-0840
E-mail: [email protected]
Daniel G. Atkins, Legal Advocacy
Director
E-mail: [email protected]
Brian J. Hartman, Administrator
GEORGIA
Georgia Advocacy Office
999 Peachtree Street #870
Atlanta, GA 30084
Tel: (404) 885-1234
Fax: (770) 414-2948
E-mail: [email protected]
Web page: www.thegao.org
Naomi Tsipora Walker, Attorney
GUAM
DISTRICT OF COLUMBIA
University Legal Services/P&A
300 I Street NE, Ste. 200
Washington, D.C. 20002
Tel: (202) 547-0198
Fax: (202) 547-2662
E-mail: [email protected]
Web page: www.dcpanda.org
Kelly Bagby, Staff Attorney
E-Mail: [email protected]
Patricia Millerioux, Staff Attorney
HAWAII
Hawaii Disability Rights Center
1580 Makaloa Street #1060
Honolulu, HI 96814
Tel: (808) 949-2922 ext. 207
Fax: (808) 949-2928
E-mail: [email protected]
Web page: www.pixi.com/~pahi
Shawn A. Luiz, AT Attorney
149
IDAHO
KANSAS
Co-Ad Inc.
4477 Emerald Street, Suite B-100
Boise, ID 83706
Tel: (208) 336-5353
Fax: (208) 336-5396
E-mail: [email protected]
Web page: http://users.moscow.com/coad
Mary Jo Butler, Legal Director
ILLINOIS
Equip for Equality Inc.
1612 Second Avenue
P.O. Box 3753
Rock Island, IL 61204
Tel: (309) 786-6868
Fax: (309) 786-2393
E-mail: [email protected]
Janet Cartwright, Attorney
INDIANA
Indiana Advocacy Services
4701 N. Keystone Ave. #222
Indianapolis, IN 46205-1554
Tel: (317) 722-5555
Fax: (317) 722-5564
E-mail: [email protected]
Web page: www.state.in.us/ipas
Gary Richter, Support Services Director
IOWA
Iowa P&A
3015 Merle Hay Road, Suite 6
Des Moines, IA 50310
Tel: (515) 278-2502
Fax: (515) 278-0539
E-mail: [email protected]
Joan Swanson, Coordinator AT Program
KENTUCKY
Protection & Advocacy Division
100 Fair Oaks Lane, 3rd Floor
Frankfort, KY 40601
Tel: (502) 564-2967
Fax: (502) 564-7890
E-mail:
[email protected]
William C. Morrison, Advocate
E-mail: [email protected]
Melissa L. Bowman, Attorney
LOUISIANA
Advocacy Center
225 Baronne, Suite 2112
New Orleans, LA 70112
Tel: (504) 522-2337
Fax: (504) 522-5507
E-mail: [email protected]
Web page: www.advocacyla.org
Ellen Katz, Staff Attorney
E-mail: [email protected]
Kathy Feldbaum, Staff Attorney
E-mail: [email protected]
Ann Maclaine, Director of Legal
Services
150
MAINE
MICHIGAN
MARITIME PROVINCES
MINNESOTA
MARYLAND
Maryland Disability Law Center
1800 North Charles Street #202
Baltimore, MD 21201-5907
Tel: (410) 727-6352
Fax: (410) 727-6389
E-mail: [email protected]
Leslie Seid Margolis, Attorney
Teri McGuire, Paralegal
MASSACHUSETTS
Disability Law Center
11 Beacon Street #925
Boston, MA 02108
Tel: (617) 723-8455
Fax: (617) 723-9125
E-mail: [email protected]
Web page: www.dlc-ma.org
Tim Sindelar, Senior Attorney
MISSISSIPPI
Mississippi P&A System for DD Inc.
5330 Executive Place, Suite A
Jackson, MS 39206
Tel: (601) 981-8207
Fax: (601) 981-8313
E-mail: [email protected]
Rebecca Floyd, Director/Attorney
MISSOURI
Missouri Protection & Advocacy
Services
925 South Country Club Drive, Unit B-1
Jefferson City, MO 65109
Tel: (314) 893-3333 ext26
Fax: (314) 893-4231
Rhonda McMillen, AT Advocacy Spec.
151
MONTANA
NEW JERSEY
MAP- DLC
1280 South Third West
Missoula, MT 59801
Tel: (406) 541-4357
Fax: (406) 541-4360
E-mail: [email protected]
Web Page: www.mt.net/~advocate
Marieke Beck, Attorney
NEBRASKA
NEW MEXICO
NEVADA
Disability Advocacy & Law Center
6039 Eldora, Suite C-3
Las Vegas, NV 89101
Tel: (702) 257-8150 x. 235
Fax: (702) 257-8170
E-mail: [email protected]
Web: www.NDALC.org
Jill Smith, Legal Services Director
NEW HAMPSHIRE
Disabilities Rights Center
P.O. Box 3660
Concord, NH 03302-3660
Tel: (603) 228-0432
Fax: (603) 225-2077
E-mail: [email protected]
Web page: www.drcnh.org
Donna D. Woodfin, Executive Director
NEW YORK
Neighborhood Legal Services
295 Main St., Room 495
Buffalo, NY 14203
Tel: (716) 847-0650
Fax: (716) 847-0227
E-mail: [email protected]
James Sheldon, Supervising Attorney
E-mail: [email protected]
Ron Hager, Staff Attorney
E-mail: [email protected]
Tamara R. Bloom, Paralegal
E-mail: [email protected]
Marge Gustas, Paralegal
Web Page : www.nls.org
152
NORTH CAROLINA
OKLAHOMA
PENNSYLVANIA
NORTH DAKOTA
North Dakota Protection and
Advocacy
Jamestown Mall, Suite 218
Jamestown, ND 58401
Tel: (701) 253-3295
Fax: (701) 253-3245
Mark S. Douglas, Attorney
OHIO
Ohio Legal Rights Service
8 East Long St. 5th Floor
Columbus, OH 43215
Tel: (614) 466-7264
Fax: (614) 644-1888
TDD: (614) 728-2553
Web page: www.state.oh.us/olrs
Carolyn Knight, Executive Director
Tim Tobin, Disability Policy Director
PUERTO RICO
Office of Ombudsman for Persons
with Disabilities
P.O. Box 4234
San Juan, PR 00902-4234
Tel: (787) 725-2333
Fax: (787) 721-2455
E-mail: [email protected]
Web page: www.oppi.prstar.net
David Cruz, Director
E-mail: [email protected]
Maria Antonia Romero, Deputy
Ombudsman
OREGON
Oregon Advocacy Center
620 SW Fifth Ave., 5th Floor
Portland, OR 97204
Tel: (503) 243-2081
Fax: (503) 243-1738
E-mail: [email protected]
Reba Sundberg, Paralegal
153
RHODE ISLAND
TEXAS
Advocacy Inc.
7800 Shoal Creek Blvd #171-E
Austin, TX 78757
Tel: (512) 454-4816
Fax: (512) 323-0902
E-mail: [email protected]
Web page: www.advocacyinc.org
Maureen O'Connell, Senior Attorney
SOUTH CAROLINA
S. Carolina P&A for People with
Disabilities
3710 Landmark Drive Suite 208
Columbia, SC 29204
Tel: (803) 782-0639
Fax: (803) 790-1946
E-mail: [email protected]
Caroline Todd
UTAH
Disability Law Center
455 East 400 South, Suite 410
Salt Lake City, UT 84111
Tel: (801) 363-1347
Fax: (801) 363-1437
E-mail:
[email protected]
Web page: www.disabilitylawcenter.org
Ron Gardner, Legal Director
E-mail:
[email protected]
Matt Knotts, PAAT Coordinator
SOUTH DAKOTA
South Dakota Advocacy Services
221 S. Central
Pierre, SD 57501
Tel: (605) 224-8294
Fax: (605) 224-5125
E-mail: [email protected]
Web Page: www.sdadvocacy.com
Robert J. Kean, Executive Director
TENNESSEE
Tennessee Protection and Advocacy
2146 21st Ave. S.
P.O. Box 121257
Nashville, TN 37212
Tel: (615) 298-1080
Fax: (615) 298-2046
E-mail: [email protected]
Web page: www.tpainc.org
Suzanne Michelle, Attorney
154
VERMONT
VIRGIN ISLANDS
VIRGINIA
Department for Rights of Virginians
with Disabilities
202 North 9th Street, 9th Floor
Richmond, VA 23219
Tel: (804) 225-2042
Fax: (804) 225-3221
E-mail: [email protected]
Web page: www.state.va-us/hhr/drvd/
Susan T. Ferguson, Director
E-mail: [email protected]
Clyde W. Mathews Jr., Managing
Attorney
E-mail: [email protected]
Jonathan Martinis, AT Attorney
E-mail: [email protected]
Linda Harris, Attorney
WASHINGTON
Washington P&A Systems
180 West Dayton, Suite 102
Seattle, WA 98020
Tel: (425) 776-1199
Fax: (425) 776-0601
E-mail: [email protected]
Web page: www.halcyon.com/wpas
Michael J. Smith, Attorney
E-mail: [email protected]
Marie Jensen, Paralegal/Advocate
155
WEST VIRGINIA
WYOMING
WISCONSIN
Wisconsin Coalition for Advocacy
2040 W. Wisconsin. Ste. 678
Milwaukee, WI 53233
Tel: (414) 342-8700
Fax: (414) 342-7900
E-mail: [email protected]
Tom Hlavacek, Director of PAAT
E-mail: [email protected]
Monica Murphy, AT Attorney
156
157
Over the past decade, the network of University Centers has increased from 40
at the time of the 1987 reauthorization to its present total of 61, with 60 additional
training initiative projects in the areas of early intervention, community services,
positive behavioral supports, assistive technology, community transition, the
Americans with Disabilities Act, aging, and special concerns. Fiscal year 1995
marked the completion of the legislative mandate that every State and Territory
be served by at least one university affiliated program, and saw the addition of
the Guam University Center. This expansion and development of new programs
is concurrent with an increased impetus for excellence, accountability and
involvement of consumers and consumer organizations.
Fiscal Year 1999 appropriations provided $17,461,000 to support these activities.
This program is authorized under Part D of the Act.
159
ARIZONA
UNIVERSITY CENTERS
UNIVERSITY CENTERS
ALASKA
UNIVERSITY CENTERS
Center for Human Development
University Affiliated Program
University of Alaska
2330 Nichols Street
Anchorage, AK 99508
Phone: (907) 272-8270
FAX: (907) 274-4802
Web Page: ttp://www.alaskachd.org/
Executive Director:
Karen M. Ward, Ph.D.
AMERICAN SAMOA
UNIVERSITY CENTERS
American Samoa Community
College
P.O. Box 194
Pago Pago, AS 96799
Phone:(011-684) 699-4455
Fax: (011-684) 699-2062
Executive Director:
Tom Uno
ARKANSAS
UNIVERSITY CENTERS
University Affiliated Program of
Arkansas
2001 Pershing Circle, Suite 300
North Little Rock, AR 72114-1841
Phone: (501) 682-9900
FAX: (501) 682-9901
Web Page:
http://www.uams.edu/uap/
Executive Director:
Mark E. Swanson, M.D.
CALIFORNIA
UNIVERSITY CENTERS
1.University Affiliated Program
Resource and Information Office
300 UCLA Medical Plaza, Suite 3314
Los Angeles, CA 90095-6967
Phone: (310) 206-2626
Fax: (310 794-1143
E-Mail: [email protected]
Co-Directors:
Olivia Raynor, PH.D, O.T.R.
Andrew Russell, M.D.
1.UCLA University Affiliated Program
300 UCLA Medical Plaza, Suite 302
Los Angeles, CA 90095-6967
Phone: (310) 825-0170
Fax: (310) 794-1143
E-Mail: [email protected]
160
COLORADO
UNIVERSITY CENTERS
John F. Kennedy
Child Development Center
University of Colorado
Health Sciences Center
4200 East 9th Avenue, Box C221
Denver, CO 80262
Phone: (303) 864-5261
FAX: (303) 864-5270
Web
Page:http://www.uchsc.edu/sm/jfk/
Executive Director:
Cordelia Robinson, Ph.D.
COMMONWEALTH OF
THE NORTHERN
MARIANA ISLANDS
UNIVERSITY CENTERS
Pacific Basin University
Affiliated Program
See UAP under Hawaii
Phone: (011-670) 234-5498
Fax: (011-670) 234-0759
Executive Director:
Robert A. Stodden, PhD
CONNECTICUT
UNIVERSITY CENTERS
A.J. Pappanikou Center on
Special Education and
Rehabilitation: A UAP
University of Connecticut
249 Glenbrook Road, U-4
Storrs, CT 06269-2064
Phone: (860) 486-5035
FAX: (860) 486-5037
Web Page:http://www.ajp.uconn.edu
Interim Director:
Pamela L. Roberts
E-Mail: [email protected]
DELAWARE
UNIVERSITY CENTERS
University Affiliated Program for
Families & Developmental
Disabilities
01 Alison Hall, Academy St.
Newark, DE 19716-7355
Phone: (302) 831-6974
FAX: (302) 831-4690
Web
Page:http://www.udel.edu/chep/cds/
Executive Director:
Donald L. Peters, Ph.D.
WASHINGTON, DC
UNIVERSITY CENTERS
Georgetown University Medical
Center, Child Development Center
3307 M Street, N.W., Suite 401
Washington, D.C. 20007-3935
Phone: (202) 687-8635
FAX: (202) 687-1954Web
Page:http://www.georgetown.edu/res
earch/gucdc
Executive Director:
Phyllis R. Magrab, Ph.D.
FLORIDA
UNIVERSITY CENTERS
Mailman Center for Child
Development University Affiliated
Program
School of Medicine
University of Miami
1601 Northwest 12th Avenue,
Rm.4067
Miami, FL 33136
Phone: (305) 243-6801
FAX: (305) 243-5978
Executive Director:
Mary T. Urbano, PhD
GEORGIA
UNIVERSITY CENTERS
University Affiliated Program
College of Family & Consumer
Sciences
Dawson Hall
161
GUAM
UNIVERSITY CENTERS
University of Guam
University Affiliated Program
Houses #11 & 12 Dean's Circle
College of Education
UOG Station, Mangilao, GU 96923
Phone: (9-011-671) 735-2481
FAX: (9-011-671) 734-5709
Executive Director:
Heidi Farra San Nicolas, Ph.D
E-Mail: [email protected]
HAWAII
UNIVERSITY CENTERS
Hawaii UAP for Developmental
Disabilities
University of Hawaii at Manoa
1776 University Avenue
West 211 Honolulu, HI 96822-2280
Phone: (808) 956-5009
FAX: (808) 956-7878
Web
Page:http://www.cds.hawaii.edu
Executive Director:
Robert A. Stodden, Ph.D
IDAHO
UNIVERSITY CENTERS
Idaho Center on
Developmental Disabilities
College of Education
University of Idaho
129 West Third Street
Moscow, ID 83843
Phone: (208) 885-3559
FAX: (208) 885-3628
Web
Page:http://www.ets.uidaho.edu/cdh
d/
Executive Director:
Lee Parks, Ph.D.
ILLINOIS
UNIVERSITY CENTERS
University of Illinois at Chicago
Institute on Disability & Human
Development College of Associated
Professions University Affiliated
Program
1640 W. Roosevelt Road
Chicago, IL 60608-1396
Phone: (312) 413-1647
FAX: (312) 413-1326
Executive Director:
David Braddock, Ph.D.
INDIANA
UNIVERSITY CENTERS
1.Institute for the Study of
Developmental Disabilities
Indiana University
2853 East Tenth Street
Bloomington, IN 47408
Phone: (812) 855-6508
FAX: (812) 855-9630
Executive Director:
David Mank, Ph.D.
1.Riley Child Development Center
Indiana University School of
Medicine,
Riley Hospital, Room A578
702 Burnhill Drive
Indianapolis, IN 46223-0001
Phone: (317) 274-8167
FAX: (317) 274-9760
Executive Director:
David Mank, Ph.D.
IOWA
UNIVERSITY CENTERS
Division of Developmental
Disabilities University Hospital
School
The University of Iowa
162
KANSAS
UNIVERSITY CENTERS
1.Kansas University Affiliated
Program Institute for Life Span
Studies
1052 Dole Building
University of Kansas
Lawrence, KS 66045
Phone: (913) 864-4950
FAX: (913) 864-5338
Web
Page:http://www.lsi.ukans.edu/uap/u
ap.htm
Executive Director:
Stephen Schroeder, Ph D.
1.Kansas University
Affiliated Program Lawrence
1052 Dole University of Kansas
Lawrence, KS 66045-0001
Phone: (913) 864-4950
FAX: (913) 864-5338
Web
Page:http://www.lsi.ukans.edu/uap/u
ap.htm
Executive Director: Wayne Sailor,
Ph.D.
1.Kansas University Affiliated
Program Kansas City - Children's
Rehabilitation Unit
Kansas University Medical Center
Ralph L. Smith Mental Retardation
Research Center
39th and Rainbow Boulevard
Kansas City, KS 66103
Phone: (913) 588-5970
FAX: (913) 588-5677
Web
Page:http://www.lsi.ukans.edu/uap/u
ap.htm
Executive Director:
Donna Daily, Ph.D
1.Kansas University Affiliated
Program
Parsons - 2601 Gabriel
Parsons, KS 67357
Phone: (316) 421-6550
FAX: (316) 421-1864
Executive Director:
David Lindeman, Ph.D.
Web
Page:http://www.lsi.ukans.edu/uap/u
ap.htm
KENTUCKY
UNIVERSITY CENTERS
University of Kentucky
Human Development Institute
114 Porter Building
730 South Limestone
Lexington, KY 40506-0051
Phone: (606) 257-1714
FAX: (606) 323-1901
Web Page:http://www.lhdi.uky.edu
Executive Director: Ron Harrison
LOUISIANA
UNIVERSITY CENTERS
Human Development Center
Louisiana State University Medical
Center
Building #138
1100 Florida Avenue
New Orleans, LA 70119-2799
Phone: (504) 942-8200
FAX: (504) 942-8305
Web
Page:http://www.hdc.lsumc.edu/hdc0
2/
Executive Director:
Robert E. Crow, Ph.D.
163
MAINE
UNIVERSITY CENTERS
Center for Community Inclusion
University Affiliated Program
University of Maine
5717 Corbett Hall
Orono, ME 04469-5717
Phone: (207) 581-1084
FAX: (207) 581-1231
Web
Page:http://www.ume.maine.edu/~cc
i/
Executive Director:
Lucille A. Zeph, Ed.D.
MARYLAND
UNIVERSITY CENTERS
The Kennedy Krieger Institute
for Handicapped Children
University Affiliated Program
707 North Broadway
Baltimore, MD 21213
Phone: (410) 502-9483
FAX: (410) 502-9524
Web
Page:http://www.kennedykrieger.org
Executive Director:
Gary Goldstein, M.D.
MASSACHUSETTS
UNIVERSITY CENTERS
1.Institute for Community Inclusion
University Affiliated Program
Children's Hospital
300 Longwood Avenue
Boston, MA 02115
Phone: (617) 355-6509
FAX: (617) 355-7940
Executive Director:
William Kiernan, Ph.D.
1.Shriver Center University
Affiliated Program
200 Trapelo Road
Waltham, MA 02254
Phone: (617) 642-0230
FAX: (617) 893-5340
Executive Director:
Philip Reilly, M.D.
MICHIGAN
UNIVERSITY CENTERS
Developmental Disabilities Institute
Leonard Simons Bldg.
Suite 268
4809 Woodward Avenue
Detroit, MI 48202-3424
Phone: (313) 577-2654
FAX: (313) 577-3770
Web
Page:http://www.wayne.edu/DDI
Executive Director:
Barbara LeRoy, Ph.D.
MINNESOTA
UNIVERSITY CENTERS
Minnesota University Affiliated
Program on Developmental
Disabilities
Institute on Community Integration
University of Minnesota
02 Pattee Hall, 150 Pillsbury Drive
SE
Minneapolis, MN 55455
Phone: (612) 626-7220
FAX: (612) 625-6619
Executive Director:
David Johnson, Ph.D
MISSISSIPPI
UNIVERSITY CENTERS
Mississippi University Affiliated
Program
University of Southern Mississippi
Southern Station, Box 316
Hattiesburg, MS 39406-4000
Phone: (601) 266-5163
FAX: (601) 266-5114
Executive Director:
Jane Siders, Ph.D.
MISSOURI
UNIVERSITY CENTERS
164
MONTANA
UNIVERSITY CENTERS
Montana University Affiliated
Program
33 Corbin Hall
University of Montana
Missoula, MT 59812
Phone: (406) 243-5467
FAX: (406) 243-4730
Executive Director:
R.Timm Vogelsberg, Ph.D.
NEBRASKA
UNIVERSITY CENTERS
Meyer Rehabilitation Institute
University Affiliated Program
University of Nebraska Medical
Center
444 South 44th Street
Omaha, NE 68198-5450
Phone: (402) 559-6430
FAX: (402) 559-5737
Web Page:http://www.unmc.edu/mmi
Executive Director:
Bruce A. Buehler, M.D.
NEVADA
UNIVERSITY CENTERS
University Affiliated Program
Research and Educational Planning
Center/278
College of Education
University of Nevada, Reno
Reno, NV 89557-0082
Phone: (775) 784-4921
FAX: (775) 784-4997
Executive Director:
Stephen L. Rock, Ph.D
NEW HAMPSHIRE
UNIVERSITY CENTERS
University of New Hampshire
Institute on Disability/UAP
7 Leavitt Lane, Suite 101
Durham, NH 03824-3522
Phone: (603) 862-4320
FAX: (603) 862-0555
Web Page:http://www.iod.unh.edu
Executive Director:
Jan Nisbet, Ph.D.
NEW JERSEY
UNIVERSITY CENTERS
The Boggs Center-UAP
(Mailing Address)
UMDNJ
P.O. Box 2688
New Brunswick, NJ 08903-2688
(Street Address)
Liberty Plaza
335 George Street, 3rd Floor
New Brunswick, NJ 08903
Phone: (732) 235-9300
TDD: (732) 235-9328
FAX: (732) 235-9330
Web Page:
http://rwjms.umdnj.edu/boggscenter/
Executive Director:
Deborah M. Spitalnik
NEW MEXICO
UNIVERSITY CENTERS
Developmental Disabilities Division
University of New Mexico
School of Medicine
4665 Indian School Rd., N.E.
Albuquerque, NM 87107
Phone: (505) 272-3000
FAX: (505) 272-5280
Executive Director:
Kate McClain
165
NEW YORK
UNIVERSITY CENTERS
1.University Affiliated Program
Rose F. Kennedy Center
Albert Einstein College of Medicine
Yeshiva University
1410 Pelham Parkway
South Bronx, NY 10461
Phone: (718) 430-8522
FAX: (718) 892-2296
Web Page:http://www.aecom.yu.edu
Executive Director:
Herbert J. Cohen, M.D.
1.Westchester Institute for Human
Development University Affiliated
Program
Westchester County Medical Center
Valhalla, NY 10595
Phone: (914) 493-8204
FAX: (914) 493-1973
Web
Page:http://www.nymc.edu/wihd/
Executive Director:
Ansley Bacon, Ph.D
1.University Affiliated Program
University of Rochester
Office of Research and Project
Administration
5th Floor Hylan Building
P.O. Box 14627
Rochester, NY 14627-0140
Phone: (716) 275-4031
FAX: (716) 275-9492
Web
Page:http://www.urmc.rochester.edu/
strong/scdd
Executive Director:
Philip W. Davidson, Ph.D.
NORTH CAROLINA
UNIVERSITY CENTERS
Clinical Center for the Study of
Development and Learning
B.S.R.C. Building
NORTH DAKOTA
UNIVERSITY CENTERS
North Dakota Center for Disabilities
Minot State University
500 University Avenue West
Minot, ND 58707
Phone: (701) 858-3580
TDD: (701) 858-3580
FAX: (701) 858-3483
Web Page:http://www.ndcd.org
Executive Director:
Bryce Fifield, Ph.D.
OHIO
UNIVERSITY CENTERS
1.University Affiliated Cincinnati
Center for Developmental Disabilities
Pavilion Building
3333 Burnet Avenue
Cincinnati, OH 45229-3039
Phone: (513) 636-8383
FAX: (513) 636-7361
Web
Page:http://www.cincinnatichildrens.
org/Affiliates/74/
Executive Director:
Jack H. Rubinstein, M.D.
1.The Nisonger Center
The Ohio State University
Campbell Hall, Room 321
1581 Dodd Drive
Columbus, OH 43210-1296
Phone: (614) 292-8365
FAX: (614) 292-3727
Executive Director:
Stephen Reiss, Ph.D.
166
OKLAHOMA
UNIVERSITY CENTERS
University Affiliated Program
College of Medicine
University of Oklahoma
800 Northeast 15th Street - Suite
316
Oklahoma City, OK 73104
Phone: (405) 271-4500
FAX: (405) 271-3087
Executive Director:
Valerie Williams, M.P.A.
OREGON
UNIVERSITY CENTERS
1.Center on Human Development
University Affiliated Program
University of Oregon-Eugene
901 East 18th Street
Eugene, OR 97403-1265
Phone: (541) 346-3591
FAX: (503) 346-5639
Executive Director:
Larry Irvin, Ph.D.
1.Oregon Institute on Disabilities &
Development/UAP
Child Development & Rehabilitation
Center
Oregon Health Sciences University
P.O. Box 574
Portland, OR 97207
Phone: (503) 494-8364
FAX: (503) 494-6868
E-mail:[email protected]
Web
Page:http://www.ohsu.edu/cdrc/uap/i
ndex.html
PUERTO RICO
UNIVERSITY CENTERS
University of Puerto Rico
Medical Sciences Campus
Graduate School of Public Health/
Institute on Developmental
Disabilities
P.O.Box 365067
San Juan, PR 00936-5067
Phone: (787) 754-4377
FAX: (787) 759-6719
Executive Director:
Margarita Miranda, Ph D.
RHODE ISLAND
UNIVERSITY CENTERS
University Affiliated Program
Of Rhode Island
Rhode Island College
600 Mt. Pleasant Avenue
Providence, RI 02908
Phone: (401) 456-8024
FAX: (401) 456-8072
Executive Director:
A. Anthony Antosh, Ph.D.
PENNSYLVANIA
UNIVERSITY CENTERS
Institute on Disabilities/UAP
Temple University
Ritter Hall Annex-00400
SOUTH CAROLINA
UNIVERSITY CENTERS
University of South Carolina
Center for Developmental Disabilities
Columbia, SC 29208
Phone: (803) 935-5248
167
SOUTH DAKOTA
UNIVERSITY CENTERS
Center for the Developmentally
Disabled
University of South Dakota
School of Medicine
1400 W. 22nd Street
Sioux Falls, SD 57069-9999
Phone: (605) 357-1439
FAX: (605) 357-1438
Web
Page:http://www.usd.edu/sduap/hom
e.html
Executive Director: Judy Struck,
M.A.
TENNESSEE
VERMONT
UNIVERSITY CENTERS
Center on Disability and Community
Inclusion
5 Burlington Square, Ste 450
University of Vermont
Burlington, VT 05401-4439
Phone: (802) 656-4031
FAX: (802) 656-1357
Web
Page:http://www.uvm.edu/~uapvt/
Executive Director:
Chigee Cloninger, Ph.D.
UNIVERSITY CENTERS
Boling Center for Developmental
Disabilities
University of Tennessee
711 Jefferson Avenue
Memphis, TN 38105-0418
Phone: (901) 448-6511
FAX: (901) 448-7097
Executive Director:
Frederick B. Palmer, M.D.
VIRGIN ISLANDS
TEXAS
VIRGINIA
UNIVERSITY CENTERS
University Affiliated Program
University of Texas at Austin
Education Building 306
Austin, TX 78712-1290
Phone: (512) 471-7621
FAX: (512) 471-7549
Executive Director:
Penny C. Seay, Ph.D
UTAH
UNIVERSITY CENTERS
UNIVERSITY CENTERS
University of the Virgin Islands
Division of Education
No. 2 John Brewers Bay
St. Thomas, VI 00802-9990
Phone: (304) 693-1323
FAX: (304) 693-1325
Executive Director:
Yegin Habteyes, Ph.D.
UNIVERSITY CENTERS
VIDD
P.O. Box 843020
700 E. Franklin St.,
Richmond, VA 23284-3020
Phone: (804) 828-3876
FAX: (804) 828-0042
Web Page:http://www.vcu.edu/vidd
Executive Director:
Fred P. Orelove, Ph.D.
E-Mail: [email protected]
168
WASHINGTON
UNIVERSITY CENTERS
Center on Human Development
& Disability
University of Washington
Box 357920 - Columbia Street
Clinic Building
Seattle, WA 98195-920
Phone: (206) 543-2832
FAX: (206) 543-5771
Web
Page:http://www.depts.washington.e
du/chdd/
Executive Director:
Michael J.Guralnick, Ph.D.
WEST VIRGINIA
UNIVERSITY CENTERS
University Affiliated Center for
Developmental Disabilities
West Virginia University
Airport Research & Office Park
955 Hartman Run Road
Morgantown, WV 26505
Phone: (304) 293-4692
FAX: (304) 293-7294
Web
Page:http://www.wuv.edu/~uacdd/
Executive Director:
Ashok S. Dey, M.A.
WYOMING
UNIVERSITY CENTERS
Wyoming Institute for Disabilities
College of Health Sciences
University of Wyoming
112 Education Building.
Laramie, WY 82071-4298
Phone: (307) 766-2761
FAX: (307) 766-2763
E-Mail: [email protected]
Executive Director:
Keith A. Miller, Ph.D.
E-Mail: [email protected]
NATIONAL ASSOCIATIONS
UNIVERSITY CENTERS
American Association of University
Affiliated Programs
Suite 410
Silver Spring, MD 20910
Phone: (301) 588-8252
FAX: (301) 588-2842
E-Mail: [email protected]
Web Page: http://www.aauap.org/
Executive Director:
Dr. George Jesien
WISCONSIN
UNIVERSITY CENTERS
Waisman Center on Mental
Retardation and Human
Development
University of Wisconsin
1500 Highland Avenue
Madison, WI 53705-2280
Phone: (608) 263-5776
FAX: (608) 263-0529
Web
Page:http://www.waisman.wisc.edu/i
ndex.html
Executive Director:
Terrence R. Dolan, Ph.D.
169
Director
Sharman Davis Barrett, Project CoDirector
Sue Folger, TA Project Administrator
Dao Xiong, Multicultural Advisor
Jess Villaseor, Multicultural
Advisor
170
171
172
173
Alabama
Special Education Action
Committee Inc.
Carol Blades, Director
P.O. Box 161274
Mobile, AL 36616-2274
334-478-1208 Voice &
TDD
334-473-7877 FAX
1-800-222-7322 AL only
[email protected]
home.hiwaay.net/~seachs
v/
Alaska
PARENTS, Inc.
Faye Nieto
4743 E. Northern Lights
Blvd.
Anchorage, AK 99508
907-337-7678 Voice
907-337-7629 TDD
907-337-7671 FAX
1-800-478-7678 in AK
[email protected]
www.parentsinc.org
American Samoa
American Samoa PAVE
Fa' Anati Penitusi
P.O. Box 6844
Pago Pago, AS 96799
011-684-699-6946
011-684-699-6952 FAX
[email protected]
om
www.taalliance.org/ptis/am
samoa/
Arizona
Pilot Parents of Southern
Arizona
Lynn Kallis
2600 North Wyatt Drive
Tucson, AZ 85712
520-324-3150
520-324-3152
[email protected]
www.pilotparents.org
Southern AZ
Arizona
RAISING Special Kids
Marta Urbina
4750 N. Black Canyon
Hwy, Suite 101
Phoenix, AZ 85017-3621
6402 Skyway
Paradise, CA 95969
530-876-8321
530-876-0346
1-888-263-1311
[email protected]
www.sea-center.org
Arkansas
Arkansas Disability
Coalition
Wanda Stovall
1123 University Ave.,
Suite 225
Little Rock, AR 722041605
501-614-7020 Voice &
TDD
501-614-9082 FAX
1-800-223-1330 AR only
[email protected]
www.adcpti.org
Statewide
With FOCUS AR
California
Exceptional Parents
Unlimited
Leslie Lee
4120 N. First St.
Fresno, CA 93726
559-229-2000
559-229-2956 FAX
[email protected]
www.exceptionalparents.o
rg
Central California
Arkansas
FOCUS, Inc.
Ramona Hodges
305 West Jefferson Ave.
Jonesboro, AR 72401
870-935-2750 Voice
870-931-3755 FAX
888-247-3755
[email protected]
www.grnco.net/~norre/
With Arkansas Disability
Coalition AR
California
DREDF
Diane Lipton
2212 Sixth Street
Berkeley, CA 94710
510-644-2555 (TDD
available)
510-841-8645 FAX
1-800-466-4232
[email protected]
www.dredf.org
Northern California
With Parents Helping
Parents, Santa Clara
California
Exceptional Family
Support, Education and
Advocacy Center
Debbie Rowell
California (CPRC)
Loving Your Disabled
Child
Theresa Cooper
4528 Crenshaw Boulevard
Los Angeles, CA 90043
323-299-2925
323-299-4373 FAX
[email protected]
www.lydc.org
Most of LA County
California
Matrix
Deidre Hayden
94 Galli Drive, Suite C
Novato, CA 94949
415-884-3535
415-884-3555 FAX
1-800-578-2592
[email protected]
g
www.matrixparents.org
Northern California
With Parents Helping
parents, Santa Clara
California
Parents Helping Parents of
San Francisco
Lois Jones
594 Monterey Blvd.
San Francisco, CA 941272416
415-841-8820
415-841-8824 FAX
174
[email protected]
Nine counties in the San
Francisco Bay area
California
Parents Helping Parents of
Santa Clara
Mary Ellen Peterson
3041 Olcott St.
Santa Clara, CA 950543222
408-727-5775 Voice / 408727-7655 TDD
408-727-0182 FAX
[email protected]
www.php.com
Northern California
With Matrix and DREDF
California (CPRC)
Parents of Watts
Alice Harris
10828 Lou Dillon Ave
Los Angeles, CA 90059
323-566-7556
323-569-3982 FAX
[email protected]
With Loving Your Disabled
Child
California
Support for Families of
Children with Disabilities
Juno Duenas
2601 Mission #710
San Francisco, CA 941103111
415-282-7494
415-282-1226 FAX
[email protected]
San Francisco
California
TASK
Joan Tellefsen / Martha
Anchondo
100 West Cerritos Ave.
Anaheim, CA 92805
714-533-8275
714-533-2533 FAX
[email protected]
Southern California
California
TASK, San Diego
Joan Tellefsen
3750 Convoy St., Suite
303
366-0178 (TDD)
302-366-0276 FAX
1-888-547-4412
[email protected]
www.picofdel.org
District of Columbia
Advocates for Justice and
Education
Bethann West
2041 Martin Luther King
Ave., SE, Suite 301
Washington, DC 20020
202-678-8060
202-678-8062 FAX
1-888-327-8060
[email protected]
www.aje.qpg.com/
District of Columbia
Florida
Family Network on
Disabilities
Jan LaBelle
2735 Whitney Road
Clearwater, FL 337601610
727-523-1130
727-523-8687 FAX
1-800-825-5736 FL only
[email protected]
fndfl.org
Florida (CPRC)
Parent to Parent of Miami,
Inc.
Isabel Garcia
c/o Sunrise Community
9040 Sunset Drive, Suite
G
Miami, FL 33173
305-271-9797
305-271-6628 FAX
[email protected]
Miami Dade and Monroe
Counties
Georgia
Parents Educating Parents
and Professionals for All
Children (PEPPAC)
Linda Shepard
6613 East Church Street,
Suite 100
Douglasville, GA 30134
770-577-7771
770-577-7774 FAX
175
[email protected]
www.peppac.org
Hawaii
AWARE
Jennifer Schember-Lang,
Project Director
200 N. Vineyard Blvd.,
Suite 310
Honolulu, HI 96817
808-536-9684 Voice / 808536-2280 Voice & TTY
808-537-6780 FAX
1-800-533-9684
[email protected]
Hawaii
Palau Parent Network
Erma Ngwal
c/o Dottie Kelly
Center on Disability
Studies, University of
Hawaii
1833 Kala Kaua Avenue,
#609
Honolulu, HI 96815
808-945-1432
808-945-1440 FAX
[email protected];
[email protected]
Idaho
Idaho Parents Unlimited,
Inc.
Cheryl Fisher
4696 Overland Road,
Suite 568
Boise, ID 83705
208-342-5884 Voice &
TDD
208-342-1408 FAX
1-800-242-4785
[email protected]
home.rmci.net/ipul
Idaho
Native American Parent
Training and Information
Center
Chris Curry & Susan
Banks
129 East Third
Moscow, ID 83843
208-885-3500
208-885-3628 FAX
[email protected]
Nation-wide resource for
Native American families,
Indiana
IN*SOURCE
Richard Burden
809 N. Michigan St.
South Bend, IN 466011036
219-234-7101
219-239-7275 TDD
219-234-7279 FAX
1-800-332-4433 in IN
[email protected]
www.insource.org
Iowa
Access for Special Kids
(ASK)
Jule Reynolds
321 E. 6th St
Des Moines, IA 50309
515-243-1713
515-243-1902 FAX
1-800-450-8667
[email protected]
www.taalliance.org/ptis/ia/
Kansas (CPRC)
Families ACT
Nina Lomely-Baker
555 N. Woodlawn
Wichita, KS 67203
316-685-1821
316-685-0768 FAX
[email protected]
www.mhasck.org
Sedgwick County and
Outlying area
Kansas
Families Together, Inc.
Connie Zienkewicz
3340 W Douglas, Ste 102
Wichita, KS 67203
316-945-7747
316-945-7795 FAX
1-888-815-6364
[email protected]
www.kansas.net/~family/
Kentucky
Special Parent
Involvement Network
(SPIN)
Paulette Logsdon
2210 Goldsmith Lane,
Suite 118
Louisville, KY 40218-1038
502-456-0923
502-456-0893 FAX
176
1-800-525-7746
[email protected]
[email protected]
www.ppmd.org
Kentucky
FIND of Louisville
Robin Porter
1146 South Third Street
Louisville, KY 40203
502-584-1239
502-584-1261 FAX
[email protected]
www.council-crc.org
Massachusetts
Federation for Children
with Special Needs
Richard Robison
1135 Tremont Street,
Suite 420
Boston, MA 02120-2140
617-236-7210 (Voice and
TTY)
617-572-2094 FAX
1-800-331-0688 in MA
[email protected]
www.fcsn.org/
Louisiana (CPRC)
Pyramid Parent Training
Program
Ursula Markey
4101 Fontainbleau Dr
New Orleans, LA 70125
504-827-0610
504-827-2999 FAX
[email protected]
Louisiana
Project PROMPT
Leah Knight
4323 Division Street, Suite
110
Metairie, LA 70002-3179
504-888-9111
504-888-0246 FAX
1-800-766-7736
[email protected]
www.projectprompt.com
Maine
Special Needs Parent Info
Network
Janice LaChance
P.O. Box 2067
Augusta, ME 04338-2067
207-582-2504
207-582-3638 FAX
1-800-870-7746
[email protected]
www.mpf.org
Maryland
Parents Place of
Maryland, Inc.
Josie Thomas
7484 Candlewood Rd
Suite S
Hanover, MD 21076-1306
410-859-5300 Voice &
TDD
410-859-5301 FAX
Massechusetts
IPEST
Carol Kennedy
PO Box 4081
Vineyard Haven, MA
02568
508-696-5486
508-696-5497 - fax
[email protected]
Massachusetts
Urban / PRIDE / IPEST
Charlotte R. Spinkston
1472 Tremont
Roxbury Crossing, MA
02120
617-445-3191
617-445-6309 FAX
1-800-331-0688 in MA
cspinkstion@compassinc.
com
Michigan
CAUSE
Deborah Canja Isom Executive Director
3303 W. Saginaw, Suite F1
Lansing, MI 48917-2303
517-886-9167 Voice &
TDD & TDY
517-886-9775 FAX
1-800-221-9105 in MI
[email protected]
www.causeonline.org
Michigan
Parents Training Parents
Pat Dwelle
23077 Greenfield Road,
Suite 205
Southfield, MI 48075-3745
177
1-800-337-4852
[email protected]
Missouri
Missouri Parents Act
(MPACT)
Janet Jacoby, Executive
Director
1 W. Armour Blvd. Suite
302
Kansas City, MO 64111
1-816-531-7070
1-816-531-4777 fax
1-800-743-7634
[email protected]
www.crn.org/mpact/
Montana
Parents Let's Unite for
Kids
Dennis Moore
516 N. 32nd Street
Billings, MT 59101
406-255-0540
406-255-0523 FAX
1-800-222-7585 in MT
[email protected]
www.pluk.org
Nebraska
Nebraska Parents Center
Glenda Davis
1941 South 42nd St., #122
Omaha, NE 68105-2942
402-346-0525 Voice &
TDD
402-346-5253 FAX
1-800-284-8520
[email protected]
g
www.neparentcenter.org
Nevada
Nevada Parents
Encouraging Parents
(PEP)
Karen Taycher
2810 W. Charleston Blvd.,
Suite G-68
Quall Park IV
Las Vegas, NV 89102
702-388-8899
702-388-2966 FAX
1-800-216-5188
[email protected]
www.nvpep.org
New Hampshire
Parent Information Center
Judith Raskin
P.O. Box 2405
Concord, NH 03302-2405
603-224-7005 (Voice &
TDD)
603-224-4379 FAX
1-800-232-0986 in NH
[email protected]
www.parentinformationcen
ter.org
New Jersey
Statewide Parent
Advocacy Network (SPAN)
Diana MTK Autin
35 Halsey Street, 4th Floor
Newark, NJ 07102
973-642-8100
973-642-8080 FAX
1-800-654-SPAN
[email protected]
www.spannj.org
New Mexico
Parents Reaching Out,
Project ADOBE
Larry Fuller
1000-A Main St. NW
Los Lunas, NM 87031
505-865-3700 Voice &
TDD
505-865-3737 FAX
1-800-524-5176 in NM
[email protected]
www.parentsreachingout.o
rg
New Mexico
EPICS Project
Martha Gorospe - Charlie
412 Camino Don Thomas,
P.O. Box 788
Bernalillo, NM 87004-0788
505-867-3396
505-867-3398 FAX
1-800-524-5176 in NM
[email protected]
New York
The Advocacy Center
Cassandra Archie
277 Alexander St., Suite
500
Rochester, NY 14607
716-546-1700
716-546-7069 FAX
178
718-302-4315 FAX
[email protected]
www.taalliance.org/ptis/uw
s/
North Carolina
ECAC, Inc.
Connie Hawkins
P.O. Box 16
Davidson, NC 28036
704-892-1321
704-892-5028 FAX
1-800-962-6817 NC only
[email protected]
www.ecacparentcenter.org/
North Dakota
ND Pathfinder Parent
Training And Information
Center
Kathryn Erickson
Arrowhead Shopping
Center
1600 2nd Ave. SW, Suite
19
Minot, ND 58701-3459
701-837-7500 voice / 701837-7501 TDD
701-837-7548 FAX
1-800-245-5840 ND only
[email protected]
www.pathfinder.minot.com
Ohio
Child Advocacy Center
Cathy Heizman
1821 Summit Road, Suite
303
Cincinnati, OH 45237
513-821-2400
513-821-2442 FAX
[email protected]
Southwestern Ohio,
Northern Kentucky,
Dearborn County, Indiana
Ohio
OCECD
Margaret Burley
Bank One Building
165 West Center St., Suite
302
Marion, OH 43302-3741
740-382-5452 Voice &
TDD
740-383-6421 FAX
1-800-374-2806
[email protected]
www.taalliance.org/PTIs/re
gohio/
Oklahoma
Oklahoma Parents Center,
Inc.
Sharon Bishop
4600 Southeast 29th
Street, Suite 115
Del City, OK 73115-4224
405-619-0500
405-670-0776 FAX
1-877-553-IDEA
[email protected]
Oregon
Oregon COPE Project
Anne Brown
999 Locust St. NE
Salem, OR 97303
503-581-8156 Voice &
TDD
503-391-0429 FAX
1-888-505-COPE
[email protected]
www.open.org/~orcope
Pennsylvania (CPRC)
Hispanos Unidos para
Nios Excepcionales
(Hispanics United for
Exceptional Children)
Liz Hernandez
Buena Vista Plaza
166 W. Lehigh Ave., Suite
101
Philadelphia, PA 191333838
215-425-6203
215-425-6204 FAX
[email protected]
City of Philadelphia,
occasional service to
surrounding counties
Pennsylvania
Parent Education Network
Louise Thieme
2107 Industrial Hwy
York, PA 17402-2223
717-600-0100 Voice &
TTY
717-600-8101 FAX
1-800-522-5827 in PA
1-800-441-5028 (Spanish
in PA)
[email protected]
www.parentednet.org
Pennsylvania
The Mentor Parent
Program
Gail Walker
P.O. Box 47
Pittsfield, PA 16340
814-563-3470
814-563-3445 FAX
[email protected]
Puerto Rico
APNI
Carmen Sells deVil
P.O. Box 21280
Ponce de Leon 724
San Juan, PR 00928-1301
787-763-4665
787-765-0345 FAX
1-800-981-8492
1-800-949-4232
[email protected]
Island of Puerto Rico
Rhode Island
RI Parent Information
Network
Cheryl Collins
175 Main Street
Pawtucket, RI 02860
401-727-4144 voice / 401727-4151 TDD
401-727-4040 FAX
1-800-464-3399 in RI
[email protected]
http://www.ripin.org/
South Carolina (CPRC)
Parent Training &
Resource Center
Beverly McCarty
c/o Family Resource
Center
135 Rutledge Ave., PO
Box 250567
Charleston, SC 29425
843-876-1519
843-876-1518 FAX
[email protected]
Tri-county: Charleston,
Berkeley, and Dorchester
South Carolina
PRO-PARENTS
Mary Eaddy
2712 Middleburg Drive,
179
Suite 203
Columbia, SC 29204
803-779-3859 Voice
803-252-4513 FAX
1-800-759-4776 in SC
[email protected]
community.columbiatoday.
com/realcities/proparents
Larry Zuniga
601 N Texas Blvd
Weslaco, TX 78596
956-447-8408
956-973-9503 FAX
1-888-857-8688
[email protected]
www.thearcoftexas.org
Burlington, VT 05401
802-658-5315 Voice &
TDD
802-658-5395 FAX
1-800-639-7170 in VT
[email protected]
homepages.together.net/~
vpic
South Dakota
South Dakota Parent
Connection
Bev Petersen
3701 West 49th St., Suite
200B
Sioux Falls, SD 57106
605-361-3171 Voice &
TDD
605-361-2928 FAX
1-800-640-4553 in SD
[email protected]
www.sdparent.org
Texas
Partners Resource
Network Inc.
Janice Meyer
1090 Longfellow Drive,
Suite B
Beaumont, TX 777064819
409-898-4684 Voice &
TDD
409-898-4869 FAX
1-800-866-4726 in TX
[email protected]
www.PartnersTX.org
Virgin Islands
V.I. FIND
Catherine Rehema Glenn
#2 Nye Gade
St. Thomas, US VI 00802
340-774-1662
340-774-1662 FAX
[email protected]
www.taalliance.org/ptis/vifi
nd/
Virgin Islands
Tennessee
Support and Training for
Exceptional Parents, Inc.
(STEP)
Nancy Diehl
424 E. Bernard Ave., Suite
3
Greeneville, TN 37745
423-639-0125 voice / 6368217 TDD
423-636-8217 FAX
1-800-280-STEP in TN
[email protected]
www.tnstep.org
Texas (CPRC)
El Valle Community Parent
Resource Center
Laura Reagan
530 South Texas Blvd,
Suite J
Weslaco, TX 78596
956-969-3611
956-969-8761 FAX
1-800-680-0255 TX only
[email protected]
www.tfepoder.org
Cameron, Willacy, & Starr
Counties.
Texas (CPRC)
The Arc of Texas in the
Rio Grande Valley
Parents Supporting
Parents Network
Texas
Project PODER
Yvette Hinojosa
1017 N. Main Ave., Suite
207
San Antonio, TX 78212
210-222-2637
210-475-9283 FAX
1-800-682-9747 TX only
[email protected]
www.tfepoder.org
San Antonio, Hondo, &
Castroville. Cameron,
Hidalgo, Willacy, & Starr
Counties.
Utah
Utah Parent Center
Helen Post
2290 East 4500 S., Suite
110
Salt Lake City, UT 841174428
801-272-1051
801-272-8907 FAX
1-800-468-1160 in UT
[email protected]
www.utahparentcenter.org
Vermont
Vermont Parent
Information Center
Connie Curtin
1 Mill Street, Suite A7
Virginia (CPRC)
PADDA, Inc.
Mark Jacob
813 Forrest Drive, Suite 3
Newport News, VA 23606
757-591-9119
757-591-8990 FAX
1-888-337-2332
[email protected]
www.padda.org
Virginia
Parent Educational
Advocacy Training Center
Cheri Takemoto
6320 Augusta Drive
Springfield, VA 22150
703-923-0010
703-923-0030 FAX
1-800-869-6782 VA only
[email protected]
www.peatc.org
Washington (CPRC)
Parent to Parent Power
1118 S 142nd St.
Tacoma, WA 98444
253-531-2022
253-538-1126 FAX
[email protected]
Washington
PAVE/STOMP
Heather Hebdon
6316 South 12th St., Suite
B
Tacoma, WA 98465
180
(CPRC)=Community
Parent Resource Center
Wisconsin
Parent Education Project
of Wisconsin
181
NICHCY
The NICHCY State Resource Sheet for your state will help you locate
organizations and agencies within your state that address disability-related
issues. Included on NICHCY state sheets are:
state senators
state governors
state agencies serving children and youth with disabilities
state chapters of disability organizations and parent groups
parent training and information projects
These state level agencies and organizations can often refer you to local sources
of information and assistance. Some state departments of education serving
general and special education have web sites. The National Association of State
Boards of Education (NASBE) provides links to sites.
NICHCY updates these State Resource Sheets regularly; however, the
addresses and telephone numbers of these groups are constantly changing. If
you find that an address or number has changed or is incorrect, please e-mail us
at [email protected] and let us know. Your contribution to helping keep our State
Resource Sheets current will be greatly appreciated by all who use them!
About NICHCY
NICHCY is the national information and referral center that provides
information on disabilities and disability-related issues for families,
educators, and other professionals. Our special focus is children
and youth (birth to age 22).
Hablamos espaol.
NICHCY provides information
and makes referrals in areas related to:
Specific disabilities
Early intervention
Special education and related services
Individualized education programs
Family issues
Disability organizations
Professional associations
Education rights
Transition to adult life, and much, much more!
NICHCY's Services Include:
182
Personal Responses to Your Specific Questions-Our information specialists are available to speak with you about
your area of interest or concern. Call us at 1-800-695-0285, or email [email protected].
NICHCY Publications-NICHCY makes available a wide variety of publications, including
fact sheets on specific disabilities, state resource sheets, parent
guides, bibliographies, and our issue papers, "News Digest" and
"Transition Summary." Most publications can be printed off the
Internet. You may also request documents in print. Our publications
are also available in alternative formats upon request.
Referrals to Other Organizations and Sources of Help-We can put you in touch with disability organizations, parent
groups, and professional associations at the state and national
level.
Information Searches of Our Databases and Library-We can provide an information search to your unique needs and
concerns.
Materials are also available in Spanish, on disk, and as cameraready originals.
Contact NICHCY
NICHCY
P.O. Box 1492
Washington, DC 20013
1-800-695-0285
If you have any remarks, suggestions, or corrections regarding the
material that NICHCY has made available at this Web site, please
send them to [email protected].
183
184
5: Self-Advocacy
and
Self-Determination
Published by:
STIR Steps Toward Independence and Responsibility
and
Shifting the Power,
projects of the
Clinical Center for the Study of Development and Learning, UNC-CH
For further information please call Rebekah Pennell at (919) 966-5171.
7-9
Self-Determination
Self-Determination Defined: Handout
10
11
What is Self-Determination
12-13
14
Principles of Self-Determination
15-17
Self-Determination Values
18-19
20-26
27-28
29-30
31-56
57-62
63-64
2
SELF-ADVOCACY DEFINED
Self-advocacy is having the opportunity to know your rights and responsibilities
stand up for them, and make choices about your own life. Self-advocacy allows people
with disabilities to speak out for themselves. By doing these things, the quality of life
for people with disabilities is vastly improved.
The self-advocacy movement began in Sweden in the 1960s when a group of
people with mental retardation drew up a list of requests about how they wanted
services delivered and what they wanted from their service providers. Back then; what
these pioneers did was a novel idea, but not any more. Now, this idea has taken the
shape of an international civil rights movement by and for people with developmental
disabilities.
The self-advocacy movement is closely related to the self-determination
movement. The self-advocacy movement emphasizes self-advocates speaking out for
themselves and learning about their rights and responsibilities. The self-determination
movement also does these things, plus it focuses on the important components of
system changes, legislation, policy, etc.
SELF-ADVOCACY: WHAT IT IS
WHAT IT ISNT
SELF-ADVOCACY IS
People speaking-up for the things that
they see as important for themselves
Informed individuals expressing
themselves
Something everyone is capable of
Here to stay, Change
A Revolution
People taking control over their own
livesfor their decisions and also for
the consequences
A process
A way of life
An inclusive, ALL encompassing, ongoing learning experience for everyone
involved
SELF-ADVOCACY IS NOT
People sitting around and complaining
A token way for an agency to say that it
includes the people it offers services to
Only for a select group
A fad
Stagnation
A Revolt
A program for John to make an
independent choice for 3 out of 4
consecutive trials of success
A product
An activity
A skills training class to meet a GSP
goal
Staying angry
Living in fear
The end
Learning to trust
Passive
Taking risks
Playing it safe
Being questioned
Developed by Deb Griffin Keny, PAL, Box 8885, Cranston, RI 02920, 401-785-2100/508-252-5601 [email protected]
SACK OF DREAMS
What is one of your future goals (one dream)?
Put your face and your dream on the outside of a
paper sack
Write and or use index cards to draw some answers
to these questions. Put them in the sack:
1)
2)
Who are some friends you know will be able to help you reach your dream?
3)
Who do you get support from (an agency and/or staff people)?
4)
What are your resources i.e.: how much of a budget do you have?
5) What is available in the community? (Groups you could connect with, free things that agencies
might offer, public meetings, special classes, etc., etc.)
As questions arise about making your dream come true, think about how you can answer them with
the resources in your sack.
Developed by Deb Griffin Kney, PAL/Advocates in Action, Box 41528, Providence, RI 02940-1528
AN ABOUT ME BOX
Have you ever been frustrated because you wanted to say something, tell a friend about your recent
vacation, or describe how you felt when you heard a new song, but you couldnt put it all into words?
This activity will help.
Someone once said that a picture is worth a thousand words. For this exercise, you will use
pictures, objects, and other things to tell people about yourself. Follow the steps below.
(1) MAKE YOUR BOX:
Decorate the container of your choice in a way that tells others something about you. Be creative!
You can use different containers (a plant pot, a Kentucky Fried Chicken Bucket, a beach bucket, a
shoe box with comic strips on it, etc.).
(2) FILL YOUR BOX:
Pick different things that answer the questions below. These can include objects, pictures, music,
food, aromas, things that have a certain texture, things that feel a certain way, like sand paper being
scratchy and cotton being soft, and more!
QUESTIONS TO ANSWER:
Use this sheet to take notes on your answers if you need to.
Get a friend to help you write things down if you want or you can draw pictures!
(1) Who is your family?
(3) Where do you spend your time during the day (work, volunteer, at home, etc.)?
(5) What is one thing you are good at or one thing you are proud you have done?
CHEAT SHEET!!
Confused?? Here are some examples to help
a coffee mug from the restaurant where you work talks about your job
a trophy, medal or newspaper story written about you talks about something youre
proud of
SELF-DETERMINATION DEFINED
Ultimately, self-determination means that people with disabilities will be in charge of their own
services and in control of money to make their desires and dreams real. Self-determination involves
people with disabilities claiming their basic civil rights including all of the freedoms guaranteed by our
Constitution and Bill of Rights. Self-determination is the freedom to make individual choices about
ones own life and the opportunity to fail, just like any other person. In order to achieve these goals,
there will have to be major changes in social attitudes and policy. Self-determination is going to
require a lot of very hard work and a collaborative effort among all people with disabilities and
advocacy groups.
Some thoughts from Ellen Cummings (a national consultant on Self-Determination) One of
the most important things about self-determination is its power shift. Self-determination without the
ability to control the resources is fantasy, and thats what makes self-determination different from
anything else we have done. Self-determination means that people have authority over how,
where, and with whom their lives will be lived. It means that people have control of the resources
needed for their support and responsibility for their decisions and actions.
Self-determination refers to acting as the primary causal agent in ones life and making
choices and decisions regarding ones quality of life free from undue external influence or
interference (Wehmeyer, 1994).
WHAT IS SELF-DETERMINATION?
SelfDetermination: what a complex word to explain such a basic concept.
Across the country, the idea of self-determination is changing the way people with developmental
disabilities live their lives. It also spells change for how public services are designed and delivered
to meet these individuals needs. In North Carolina, four projects are demonstrating how this idea
can be put to work to change people's lives. Meanwhile interest is growing across the state among
self-advocates and parents to make self-determination work statewide.
It can be as simple as being able to choose extra sauce on your pizza or as complex as choosing to
live in your own apartment with the services and supports you need.
Self-determination simply is the freedom and right to make choices about one's life, the same
choices that people without disabilities take for granted. People with disabilities deserve the right to
determine what services and supports they need, and who will provide them. How and when they
use their resources are decisions that people with disabilities should have the power to make.
The constitution of the United States guarantees to all citizens: the right to life, liberty and the pursuit
of happiness. Without self-determination those rights are taken away.
Today self-determination is just a dream for most people with disabilities. Decisions are made for
them; where and with whom they will live, where and when they will work, when to get up and when
to go to bed, what time of day to take their shower or bath are usually the decisions someone makes
for them. When you are part of a group the groups needs come before the individual's.
Sheltered workshops and group homes were considered innovative ideas in their time, however
today they are outdated and provide little or no opportunity for individuals to fulfill their dreams for
life. How long could you work in the same room or building with little or no access to the real world?
Would you be happy performing the same job day after day? Could you enjoy a job that you did not
choose, but one that the system chose for you?
How would you like to live in a home with a group of people you did not choose to live with, or eat
from a menu that was prepared by a stranger who did not take into consideration your likes and
dislikes? Do you really think that people who live in-group homes all want to go see the same movie
or all want to go bowling on the third Saturday of the month? If given the opportunity to decide what
they would like to do, each one might have a different idea of what would be fun to do that day.
We seem to have a great misconception that if someone does not look like us, they are somehow
different. That idea is far from the truth. A person's ability to walk does not affect their ability to think.
Many people who have physical limitations when given the chance to learn and communicate their
dreams successfully fulfill those dreams. They are able to work in the community, attend social
functions, and receive an education to the best of their abilities.
Citizens with limited cognitive abilities also have dreams the same as you and I. They want to live in
a loving, supportive, family environment. They deserve the right to work at a job that they enjoy and
chose, not a job that was picked for them. Even taking part in deciding where they would like to go
for a vacation is self-determination.
There is an ever-growing cry from people with disabilities and their families to gain the control of their
lives that we take for granted. People with disabilities need and want to be contributing members of
our communities.
No one is independent of others. We are all interdependent. Utility companies provide our electricity,
water, and phone services. The media provides us the news. We rely on farmers to grow the food
we eat and sanitary workers to take away our leftover trash. We rely on friends and family in times of
crisis. Our neighbors come to our aid when they see we are in need of help.
Every one of us has different abilities and interests. Some of us require help in accomplishing daily
tasks that others take for granted. People with disabilities are part of our system already, and
contribute a great deal to our lives through their participation in our work places, communities, and
families. More individuals want that chance!
We all have dreams for our future. People with disabilities have those same dreams and are willing
to work towards their goals just like you and I. Yes people young or old with disabilities do want
control of their lives.
Self-Determination is just a simple concept, the basic right to fulfill one's dream for their future.
Please help us make it a reality for all people.
Written By
Rosemary Livingston Bernauer
For my son Andrew and people with disabilities everywhere
(From: Thomas Nerney and Donald Shumway, Beyond Managed Care: Self-Determination for Persons with Disabilities, September, 1996).
PRINCIPLES OF SELF-DETERMINATION
People with developmental disabilities have:
FREEDOM
The freedom to develop a personal life plan.
People with developmental disabilities have the freedom to make life decisions. Self-Determination
recognizes that this is an ongoing and dynamic process. The work of those committed to persons
with disabilities is to assist the individual when she or he needs assistance in exercising this right.
THIS MEANS
You must plan your own life. Your plans must fit your budget. If you want to change your plan, you
can do it. You can do the things you want to do, but you must know what you want to do and when
you want to do it.
Different people make different choices. Some people choose to have an apartment of their own.
Others choose roommates. Some buy houses or condos to live in. Other people get married and
find their own apartment. Some people get vans and adapt them for their disability. People can
shop where they like. They can buy and wear their style of clothes. They can buy the food they
enjoy and go out to eat when they want as long as it all fits in their budget. They can find a good job,
and hire the people they like to help them when they need help.
AUTHORITY
The authority to control a targeted amount of resources.
The resources are under the control of the individual and freely chosen family members and friends.
This means that the resources are portable. They can be re-configured; priorities can be changed
and the dollars follow the individual as his or her priorities change. Public dollars are used wisely to
buy supports and services the person wants and needs.
THIS MEANS
Every person will have their own special government money account. People who need a lot of help
will get more money than people who only need a little help. An agency acts like a bank. You can
change agencies if you want to. When you need money to pay someone who works for you, you
and your circle of support tell your agency who they should pay and how much they get. The agency
will pay for all the expenses you budget for such as programs, transportation, community activities,
schools and maybe rent.
SUPPORT
The support needed to obtain personal goals.
Those supporting individuals with disabilities also much be free to provide the desired assistance,
either as employees of service agencies or when hired by the individual, to achieve the variety and
intensity of supports an individual may desire.
THIS MEANS
You will have to find a group of family, friends, community members, and professionals
to help you decide what supports you need to live responsibly in the community. You will decide, but
other people who you trust will help you think about it. This group is called your circle of support.
You can hire your own staff, people you like to help you, either from an agency or someone you
know and trust in your neighborhood. If you need a lot of help, you may want to hire someone who
spends the night with you or lives with you. If you need less help, perhaps people can come a few
hours a day. They can help you with your medication. You can hire people who are good at math to
help you with the bills, or a good cook to teach you how to cook. An aide could help you with
dressing and cleaning if you cant do that yourself. You can hire someone to help you find he job
you want. You must plan on enough supports to keep you safe and healthy. It all depends on what
you need and want.
DO YOU WANT TO BE IN SELF-DETERMINATION?
Do you like where you are living now, or do you want to live somewhere else? Do you have a job?
One that you like? Do you earn some money? Do you get to go to places you like to go? Can you
and your friends get together when you want to?
Self-Determination can help you to answer these questions with a big YES!
HOW DOES SELF-DETERMINATION WORK?
People that choose the Self-Determination process may have an agency helping them. If they live in
an agency house, they will have to follow the agency rules. If they rent or own their own place, they
make this own decisions.
You need a plan for your life. A service coordinator or a service broker can be paid to help you
develop your plan. They can also help you put your plan into action. You need to find your family,
friends, community friends and staff people who are willing to become part of your circle of support
to help you.
You need to find out more about Self-Determination. Call your Self-Advocacy Association or your
DDSO.
RESPONSIBILITY
The responsibility for contributing to ones community and using public dollars wisely.
They have the ordinary obligations associated with freedom in America. These are obligations of
citizenship and include the obligation to spend public dollars in ways that are life-enhancing and
cost-effective. This obligation includes engaging other social, business, and religious organizations
in ways that help redefine and build community for all of us. The individual also has the
responsibility to give back to the community through paid and volunteer work whenever possible.
This includes seeking jobs in the community, and using supports to find and keep employment.
THIS MEANS
Earning your own money is important. You should try to find a way to get a paying job. You can use
some of your government money to help you do this. Money that comes from the government has to
be spent according to certain rules. You will have to spend your government money that the agency
takes care of wisely. You can spend money you earn on the things you want. Of course, you will
have to pay for your food and rent first.
You will also want to make more friends in the community. One of the best ways of doing this is to
belong to clubs, churches and service organizations like the Y, the Moose, the Lions or other fine
organizations. You can find ways to help them with their projects in your free time.
Finding My Way Through Self-Determination in New York State, Self-Advocacy Association of New York State and the New York State Office of Mental
Retardation and Developmental Disabilities.
in life to seeing them as valuable citizens who have many talents, strengths, and abilities to
contribute to their communities.
From seeing persons with disabilities as service recipients to seeing them as individuals with rights
and entitlements.
From providing agency-controlled services to supporting person-directed services.
From systemic and agency control of financial resources to individual control.
From control to empowerment.
A Final Thought
Self-Determination is what life is all about. Without it, you might be alive, but you wouldnt be
livingyou would just be existing
(M. Kennedy, Self-Determination and Trust: My Experiences and Thoughts, In Sands & Wehmeyer,
Self-Determination Across the Life Span, 1996, p. 48).
Prepared by Michael Kennedy & Lori Lewin, Staff Associates
The preparation of this fact sheet was supported in part by the Center on Human Policy, School of Education, Syracuse University, through a
subcontract with the Research and Training Center on Community Living, University of Minnesota, supported by the U.S. Department of Education,
Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No.
H133B980047, and in part by the National Resource Center on Supported Living and Choice, Center on Human Policy, School of Education, Syracuse
University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and
Rehabilitation Research (NIDRR), through Contract No. H133A990001. Members of the Center are encouraged to express their opinions; however,
these do not necessarily represent the official position of NIDRR and no endorsement should be inferred.
NRC FACT SHEET
National Resource Center on Supported Living and Choice, Center on Human Policy Syracuse University, 805 South Crouse Avenue, Syracuse, NY
13244-22801-800-894-0826 ( 315-443-3851 (voice) ( 315-443-4355 (tty) ( 315-443-4338 (fax) http://soeweb.syr.edu/thechp ( [email protected]
MACROW
SELF-DETERMINATION
CHECKLIST
VERSION 3.3
(Revised 3.12.01)
1999
MACROW
Ric Crowley
30803 Dunn Rd.
Denham Springs, LA 70726
Bob McCaffrey
415 Breakfast Hill Rd.
Greenland, NH 03840
225-939-0344 (voice)
225-667-4040 (home office)
225-667-3512 (fax)
[email protected]
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas Nerney
PREFACE
This checklist is intended to be a barometer to indicate if you are setting a course that
will ultimately support individuals with disabilities in getting a life. Many individuals
have, through conversation, presentations, publications or sharing life experiences
contributed to this checklist. Periodically it will be revised to incorporate current
feelings, needs, dreams and views of individuals with disabilities, their families and
friends. The checklist is not intended to replace or be used as a personal "outcomes"
evaluation tool.
The reference to the "Personal Life Quality Protocol" (Center for Outcome Analysis)
and the "Planning Guide for Paid and Unpaid Companions" (Cummings and Crowley)
are suggestions only. Other tools serving the same purpose may be available. The
Principles of Self- Determination and Principles for Action are provided as reminders
to those completing the checklist.
[NOTE: The following pages are adapted from several publications authored by Ellen
Cummings, Thomas Nerney, James W. Conroy, Anita Yuskauskas, Robert P.
McCaffrey and Richard F. Crowley.]
DEFINITION OF SELF-DETERMINATION
A national movement to redesign long-term care for individuals with disabilities that eschews the
traditional program models and facility placement approaches Self-determination insists that
public dollars be seen as an investment in the lives of people with disabilities. Public dollars
need to be used strategically to support existing family and community relationships as well as to
help create them where they do not exist.
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas Nerney
PRINCIPLES OF SELF-DETERMINATION
The following principles are meant to provide a philosophical foundation for
substantive system and cultural change that incorporates values deeply held by
persons with disabilities, families, friends and advocates:
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas Nerney
All people have an inherent right to be treated with dignity and to be respected as
a whole person with regard to mind, body, and spirit. Most of lifes greatest
lessons are learned when we make choices that we later realize were mistakes
All people have the right to the dignity of risk. The network of support makes risk
possible by weaving a net, which provides safety and supports growth.
RELATIONSHIPS
People have a right to choose what they do with their lives where and with whom.
When people need help, it is friends and family closest to them who can assist in
broadening their experiences and exercising their right to choose. A personal
network or circle of support chosen by the person ensures freedom of choice.
CONTROL
People have the power to make decisions and truly control their lives, including
their resources and finances. If support must be purchased, the people buying it,
with assistance from family and friends when necessary will determine which
supports will be purchased and when. People must have control of hiring those
who will provide support.
DREAMING
All people have dreams and aspirations that guide the actions that are most
meaningful to them including commitment to helping people create their dreams,
respecting those dreams and helping make them come true is crucial.
CONTRIBUTION AND COMMUNITY
FISCAL CONSERVATISM
The services the present systems provide are often expensive and often do not
meet the needs of those they are intended to support. Making things happen does
not always require money. If people have, opportunities to make real choices, and
control over those choices, they will purchase support in a way that will allow
them to get what they need, and pay only for what they receive. Make real
investments, spend money more efficiently and make adjustments when needed.
They are also responsible to contribute to their support from all financial
resources at their disposal. To find the best quality for the most reasonable price,
people must be free to purchase in and out of the system.
CHANGING ROLES OF
PROFESSIONALS
Individuals, as they take control authority over their lives and resources, will
assume responsibility for their decisions and actions. Professional and staff work
for the individual rather than for the system. Families, friends and staff assist
people to create more meaningful relationships, link them with needed supports,
remove barriers, develop safety networks, and help dreams come true - while
never forgetting who is charge
WHATEVER IT TAKES
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
Score
1.
_________
2.
_________
3.
_________
4.
_________
5.
_________
6.
_________
7.
Did individual choose the time, place and date of PCP meeting?
_________
8.
_________
9.
________
_________
_____
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
SCORE 0 - 5
_____
________
________
15. Did the Personal Agent participate in helping recruit circle members?
_____
_____
_____
_____
_____
_____
_____
_____
_____
_____
_____
25. Does the individual have access to cash or use an ATM card,
credit card or personal checking/savings account?
TOTAL SCORE
_____
______
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
$$ SELF-DETERMINATION MONEY $$
Show Me the Money
Self-Advocates who have heard about Self-Determination as well as customers involved
in the Self-Determination process have heard that they have control over the money
that they can use, but are often mystified by the fact that they do not have the money in
hand. This exercise will help them learn where the money comes from and how they
can control it.
Materials needed:
A large stack of Self-Determination $1000 bills.
Signs for all the players to wear, so that we all know their roles.
Players:
FOCUS PERSON Self-Determination Participant
TAXPAYER
SSI/SSA
OMRDD
State DD Agency
BOSS or ENTERPRISE
FISCAL INTERMEDIARY
LANDLORD
BANK
SUPERMARKET/SUPERSTORE
TRANSPORTATION
- CAR/BUS/TRAIN
TAX COLLECTOR
SERVICE COORDINATOR
SUPPORT STAFF
JOB COACH
SUPPORT BROKER
SERVICE COORDINATOR
CIRCLE OF SUPPORT
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
The process leader chooses the focus person, the taxpayer, the state agency, the fiscal
intermediary, and the tax collector.
The Focus Person chooses his or her circle of support, a Boss or business, a service
coordinator, a service broker, a job coach, support staff, transportation, a
supermarket/superstore, and a landlord or a bank for the mortgage.
The process leader hands out Self-Determination money to everyone including extra to
the Boss. Each person gets to keep one bill, but the tax collector collects the rest and
gives it to he State Agency (OMRDD) and SSI/SSA.
The Focus Person has met with his or her circle of support and has a budget of their
income and expenditures.
The State agency gives the Fiscal Intermediary part of the money for the use of the
Focus Person. It is the amount listed on the budget.
The Focus Person with the help of the Circle of Support decides how to spend the
money. They have listed the expenses on the budget.
Now we will spend the money. The Focus Person serves as the delivery service to get
the money to the right place.
The SSI/SSA $$ go to the Bank (personal account).
The Boss pays the Focus Person and those $$ got to the Bank (personal account).
Exception: OMRDD pays the Service Coordinator. (Not the Focus Person)
The Fiscal Intermediary with the Focus Person pays the Support Staff, the Support
Broker and the Job Coach.
The Focus Person goes to the Bank and gets money from the personal account for the
supermarket, the landlord, the mortgage, property taxes and transportation.
If more money is needed, the Focus Person applies to OMRDD.
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
Guardian:_______________________
Advocate:
Mrs. Demo-Mother
DDSO: Taconic
CIN# 000000 Date: 10/20/99
EXPENSES
1. Supports-Individual, program purchase, one time expenses
2. Housing-(Rent, mortgage, taxes, utilities, furniture, supplies)
3. Personal-(Food, clothing, recreation, meals out, education, dues)
4. Transportation-(Taxi, bus, subway, auto, insurance)
5. Fixed Monthly Costs- (Health & life insurance, loans, spend down, prescriptions)
6. Miscellaneous- (Medical/Dental, taxes)
TOTAL EXPENSES
NOTE:
3100
572
675
500
37200
6864
8100
6000
250
3000
5097
61164
The
The Personal
Personal Resource
Resource Account
Account (PRA)
(PRA) covers
covers both
both Medicaid
Medicaid HCBW
HCBW funds
funds and
and 100%
100% State
State dollars.
dollars. Medicaid
Medicaid waiver
waiver funds
funds
for
for eligible
eligible participants
participants may
may be
be used
used to
to fund
fund any
any needed
needed supports
supports and
and services
services consistent
consistent with
with ISP
ISP goals
goals and
and the
the approved
approved HCBS
HCBS
agreement.
not limited
to e-mods,
staff, e-mods,
adaptive
equipment,
and community
participation
waiverwaiver
agreement.
These These
includeinclude
but arebut
notare
limited
to staff,
adaptive
equipment,
and community
participation
costs.
costs.
Any
supplement
needed
for
living
costs
(room
and
board),
elective
divisional
costs
not
related
to
ISP
goals
andexpenses
any
Any supplement needed or living costs (room and board), elective diversional costs not related to ISP goals and any
for
expenses
for HCBW
ineligible
persons
comeState
out of
100% State funds.
CBW ineligible
persons
must come
outmust
of 100%
funds.
COMMENTS:
John lives with a disabled friend, sharing an apartment. He wants to control his own life. He needs support at home, at his job and to
negotiate the community. He lives in a small town without access to public transportation and uses a leased car and qualified staff for
transportation. He hires his own staff and pays them through a fiscal intermediary.
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas Nerney
INCOME
MONTHLY ANNUAL
1. Employment
2. Public Assistance
3. Social security- (SSI & SSDI)
4. Other Benefits: VA, Black Lung, Railroad, etc.
5. Food Stamps
6. HEAP
7. HUD Subsidy
8. HCBW-Consolidated Supports (CSS)*
9. 0OMRDD Supports- (100% State funds)
10. Medicaid- (Other State Plan)
11. Medicare
12. Private Health Insurance
13. Other Insurance: Life, Burial, etc.
14. Pre-paid Burial Plan
15. Bank Accounts
16. Other Assets
17. Other Loans and Liabilities
18. Pending Litigations and Judgments
TOTAL INCOME
375
0
662
0
10
0
0
3500
300
250
0
0
2000
0
350
0
0
0
_____
5097
Note:
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas Nerney
4500
0
7944
0
120
0
0
42000
300
3000
0
0
2000
0
350
0
0
0
______
61164
A QUALITY ASSURANCE
TOOL KIT
FOR
THE SELF-DIRECTED SUPPORTS PROGRAM
By Pat Tangeman,
Support Team Member
Plan
Renew
Select Goals
Review/Reflect
Develop Outcomes
Measurements
Actions
Perform
Actions
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don
Shumway and Thomas Nerney
TOOL KIT
TABLE OF CONTENTS
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don
Shumway and Thomas Nerney
QUALITY ASSURANCE
WHAT IS IT?
AND
WHY DO IT?
Quality Assurance System
A quality assurance (QA) system is a way to measure the success of a program in
meeting its intended goals and purpose. It also provides a way to find out what
changes need to be made in the program to keep success occurring or to make
improvements as needed.
For the Self-directed Supports statewide change, the QA system intends to find out
whether the plan that each local team has developed has helped families and self
advocates to chart a more self-directed path for themselves. It will help to ask
whether the components of the plan really do encourage the values that were
described by each local steering committee. Questions asked in the QA review
process will help local teams determine what changes are needed to move plans
closer to the overall goals and 3 year state guidelines.
Why do this?
A systematic review of each countys program can guide the future development of
the plan.
The review will promote continuous program development and improvement.
Why not let some experts do the evaluation and QA?
Leaders in the field of developmental disabilities and self-determination suggest that
local teams define their own QA systems especially if the overall vision of the program
is the charting of self-directed paths. You developed the plan and program. You
designed the program. You ought to evaluate it and make the improvements.
Who should develop the QA plan?
The local group who is responsible for monitoring the plan should develop and carry
out the QA plan. This group needs to have the gratification of success and the
responsibility for making the necessary changes.
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don
Shumway and Thomas Nerney
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don
Shumway and Thomas Nerney
Visions of the results that you want for each goal area.
2. Measurement: A way to know if you are making progress toward that outcome or
result.
3. Actions:
(Gosh, this looks like things that we have already done for the plan
development)
Right! Just choose the goal areas that you want to track!
Process:
Once you have chosen your goal areas, a small group could develop the outcomes,
measures and actions and bring a draft to the large group. For smaller
counties, this activity could be done in the whole group led by the
facilitator, however some preparation ahead of time with a small group
would make the process go smoothly.
Outcomes or visions for what you want: why do this? Why not just use the goal
statements? People who have studied creative thinking have found that
if individuals or groups can learn to be more results oriented and spend
time visualizing the benefit or result for themselves or others, there will
be a tension between what is and where you want to go. This tension
can provide both a pull towards the outcome and a focus for knowing
when you get there. Outcomes are written in the present tense and
describe future behaviors or program characteristics.
Some sample outcomes:
Goal:
Outcome:
Goal:
Outcome:
program.
Goal:
Outcome:
Measurement or how you will know when you are making progress.
When you choose a way to know when you are making progress, you usually need to
observe some change. For something to be observable, you usually need to either
count a change, see a change or see a difference. These are called quantifiable
ways to measure progress. Quantifiable measures should also be achievable or
doable.
People who study changes in program development or individual growth have learned
that something else is needed. Sometimes change in systems just needs to be talked
about or described. These ways of measuring progress are called qualitative
measures. Ways to describe change include phone interviews about satisfaction with
a program, satisfaction surveys, focus groups, and just group discussions.
To measure program results, then, it is a good idea to use both observable ways and
descriptive ways. Measurement samples for the outcomes mentioned earlier follow.
Appendix B contains some sample satisfaction surveys that have been used
successfully by Self Determination Resources Inc.
Samples:
Outcome #1: Families and people with disabilities use self-directed supports to
realize their own individual goals.
Measurements/How will you know when you are making progress?
1. Using the SDRI Individual Satisfaction form, 75% of people who have received
services indicate that the program is doing a good job in helping individuals and
families obtain the supports they want and that people with disabilities and families
have achieved at least one of their goals.
2. Our service records indicate that we were able to find supports for 100% of people
requesting this service.
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don
Shumway and Thomas Nerney
3. Using random phone interviews, most people described the ability to meet their
own individual goals.
4. A focus group of families and individuals who have used self-directed supports
describe positive experiences and movement towards reaching their goals.
Outcome #2: Families and people with disabilities who need and desire
supports know about the program and can access services easily and
efficiently.
Sample Measurements:
1. Families and individuals with disabilities describe their positive experiences
accessing the Self-Directed Supports program in focus groups.
2. Random phone calls to people who have used the Self-Directed Supports Program
indicate positive experiences in accessing the program.
3. The results from the SDRI satisfaction survey indicate that 75% of people using
the services did not have difficulty accessing the service.
Outcome #3: Families and people with disabilities know about the services
available in our community and use county self-directed supports
to become a part of the community service system.
Sample Measurements:
1. Selected satisfaction surveys indicate that families and people with disabilities use
community services.
2. Focus group interactions describe how people use self-directed supports to access
community services to meet their goals.
Actions:
The action statements are what you will do to move towards the
outcome. Your plan document most likely contains many of the actions
steps you would use for the QA plan.
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don
Shumway and Thomas Nerney
Action
Responsibility
Timeline
1. Schedule QA review
meeting for Sept.
governing body
meeting
Chair
August reminder
SDS Coordinator
Begin in April
Parent Group
Plan in June
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don
Shumway and Thomas Nerney
Date: _______________________
Quality Assurance Criteria Goal: All possible efforts will be made to ensure that the Self-Directed Supports Services are
accessible to all families and self-advocates across the county.
What will you do to make this happen?
(ACTION STEPS)
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas Nerney
Date:_______________________
Quality Assurance Criteria Goal: Improve the ability of people with disabilities to direct their own lives.
What will you do to make this happen?
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas Nerney
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
REFERENCES
Alberto, P.A. and Troutman, A.C., Applied Behavior Analysis for Teachers. Charles
Merrill Publishing Company, Columbus, Ohio, 1982.
Fetterman, D.M., Kaftarian, S.J., Wandersman, A., Empowerment Evaluation:
Knowledge and Tools for Self-Assessment and Accountability, Sage Publications,
Thousand Oaks, CA., 1996.
Fox, M.J., Quality Assurance Management, Chapman and Hall, New York, 1993.
Newcomer, K.E., Using Performance Measurement to Improve Public and Nonprofit
Programs, No. 75, Fall 1997. Jossey-Bates Publishers.
Roth, W.F., A Systems Approach to Quality Improvement, Praeger, New York, 1992
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
Is It
Happening?
YES NO
Key Activities
Is It
Happening?
YES NO
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
Is It
Happening?
YES NO
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
CUSTOMER EDUCATION
Customers may want new information or skills in order to take charge of their supports.
The Self-Directed Support Program helps customers to get the information and skills
they want by offering individual education, workshops, and contact with mentors, or
other customers who have experience and are willing to share.
This checklist shows what Self-Directed Support Programs do to assist customers to get
the information and education they want to direct their supports. It can be used as a
guide to design or evaluate the Programs activities.
Key Activities
Is It
Happening?
YES NO
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
CONSUMER GOVERNANCE
Self-Directed Support Programs are led by a governing group of community leaders, at
least 51% of whom are individuals with disabilities and family members. The governing
group is responsible for making sure that the Self-Directed Support Program does its
job of helping customers to determine and direct their supports. The governing group
oversees the quality of the Programs work in carrying out each of its functions, and
develops goals and policies to improve the Program.
Key Activities
Is It
Happening?
YES NO
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
COMMUNITY BUILDING
The Self-Directed Support Program conducts forums and workshops in the community
to educate people about self-directed support and to increase the number of selfdirected support providers. Staff also work with other organizations to increase the
support options available in the community.
This checklist shows what Self-Directed Support Programs do to build community
supports. It can be used as a guide to design or evaluate a Programs activities.
Key Activities
Is It
Happening?
YES NO
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
Good job
Needs work
Help!
Right amount
Not enough
Confusing
Close
Needs work
Help!
No
Comments:
______________________________________________________
OPTIONAL
If you would like to talk with someone about your experiences at SDRI,
please
Write your name and phone number below.
Name: ______________________________
Phone: ______________________
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
Making Progress
Im Stuck
Not Important
Goal:_________________________________________________________________
________
Achieved it
Anymore
Making Progress
Im Stuck
Not Important
Goal:_________________________________________________________________
________
Achieved it
Anymore
Making Progress
Im Stuck
Not Important
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
YOUR SATISFACTION WITH LIFE AND THE SUPPORTS OR SERVICES YOU GET
Parts of life
No
No
No
No
Do you have a personal agent (someone who works for you to arrange the support you need)?
If yes, are you getting the help you want from your agent?
Are there supports or services that you need and you dont get?
Yes
Yes
No
Yes
No
No
Yes
No
SUM IT UP
Look over your answers. Do you want to change anything to safe or happy?
Yes
No
Yes
No
THANKS FOR DOING THIS QUESTIONNAIRE. PLESE MAIL IT BACK IN THE ENCLOSED ENVELOPE. IF YOU HAVE
ANY QUESTIONS, PLEASE CALL _________________________
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas Nerney
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
Program Management
5. We understand what our Program does for customers.
______ yes
______ no
6. Our program policies are adequate.
______ yes
______ no
7. We are able to adequately oversee and guide the work of our Brokerage Manager.
______ yes
______ no
Suggestions for ways to improve our Boards management of the Program.
On a Personal Level
8. I feel good about my contribution to the Board.
______ yes
______ no
9. I feel like the effort I put into the Board is worth it.
______ yes
______ no
10. I have the information I need to fulfill my Board role.
______ yes
______ no
11. I have the skills and support that I need to fulfill my Board role.
______ yes
______ no
What do you need to increase your effectiveness/satisfaction on the Board?
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
THERES
NO PLACE
LIKE HOME
Some things to think about when deciding where to live.
Developed by Deb Griffin Kney
Advocates in Action/PAL
Box 41528
Providence, RI 02940-1528
Voice: (401) 785-2028/2100 (508) 252-5601
Fax: 401-785-2186
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
NO
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
If you answered the last question NO, explain why you think your home is not clean or
safe. What do you want to see different?_________________________________________
______________________________________________________________________________
If youre thinking about moving, do you have enough money to do it? Rent or a
mortgage, food and utilities are some of the things you will have to pay for. Can
you think of some other things you will have to pay for? Write them here:
___________________________________________________________________________
Where do you want to live? Near your job? Near family? Near friends? In the
country? In the city? On the bus line? In a house? In an apartment? List your
answers:
_________________________________________________________________________
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
DECISIONS!
Moving is a BIG decision! If you are thinking about getting your own place, be
ready to tell friends and family why you want to do it. Is it the most important
thing that you want? Why? Write your answer:
__________________________________________________________________________
Now that youve found out about housing, and asked yourself some important
questions, you may have decided to move, or to ask for more support where you live
right now. Whatever you decide that you want and need, GO FOR IT!! Here is a list of
some possibilities. Check off the ones that are most important to you. Dont be afraid
to dream! Things dont need to happen overnight!
Learn how to do different things Ill need to live on my own. Here is a list of some
things to learn. Circle your top three or add others:
COOKING
CLEANING
SHOPPING
TAKING A BUS
MEDICINE
YARD MAINTENANCE
____________________
BANKING
TAKING
______________________
Move to my own place to live. Here are some things to do first. Circle all that you
need and write others. I need to:
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
My parents/family that I live with are getting old and it is hard for them to help me
like they used to at home. I need someone to come to my home and help me so
I can continue living with them. The things I need help with at home so I can
keep living there are:
__________________________________________________________________________
I want to make some changes to my home so I can get around easier. Some
changes people make are: a ramp, hand bars in the bathroom, and wider
doorways. The changes I need to make are:
CHANGE TO MAKE
For example: I need a new ramp
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
I need extra emergency help to live in my home. Right now I call this
person/number if there is an emergency:
____________________________________________________
I need someone else to call.
I need to learn to use 9-1-1 for emergencies when I cant reach family, friends, or
my staff support.
I need a person to help me with personal care in my home. Some of the things I
need this person to help me do are:
HELP ME TO TAKE A
SHOWER OR BATH
HELP ME
IN THE BATHROOM
OTHER THINGS:
________________________________
________________________________
________________________________
____________________________________
____________________________________
____________________________________
Other things I think I need or want that will help me to live in the place that I want,
with the people that I want are: ____________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
Are you making some decisions about housing? You can call or write the
Division of Developmental Disabilities, or any of the other Resource
Networks listed at the back of this book for help. They can give you more
information. They can also help you walk through this booklet to make
some decisions if you arent sure. Either way, call or write today.
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
These are some Obstacle Cards You can make others. Ask the class
members what types of obstacles they have faced or think about facing in
regards to moving.
YOU DONT KNOW HOW TO
READ THE APARTMENT ADS
IN THE NEWSPAPER
YOU ONLY HAVE A BEDROOM
SET. YOU DONT HAVE ANY
OTHER FURNITURE FOR YOUR
NEW HOME
YOU DONT HAVE ANY
KITCHEN UTENSILS.
DONT KNOW HOW TO
HANDLE MONEY
STAFF AT YOUR WORKSHOP
TELL YOUR PARENTS YOU
ARENT READY TO MOVE
BECAUSE YOU CANT COOK
YOU WANT TO MOVE, BUT YOU ARE
AFRAID TO LIVE ALONE
YOU DONT THINK YOU CAN
AFFORD AN APARTMENT ON
YOUR OWN
YOUR PARENTS TELL YOU
THEY ARE AFRAID YOU MIGHT
GET HURT IF YOU MOVE INTO
YOUR OWN APARTMENT
YOU COULDNT GET IN THE
DOOR OF THE APARTMENT
YOU WERE GOING TO LOOK
AT BECAUSE THERE WASNT
A RAMP.
YOU DONT KNOW HOW TO DO
LAUNDRY
Adapted from publications authored by Ellen Cummings, James W. Conroy, Richard F. Crowley, Don Shumway and Thomas
Nerney
6: Starting a Self-Advocacy
Group
Published by:
STIR Steps Toward Independence and Responsibility
and
Shifting the Power,
projects of the
Clinical Center for the Study of Development and Learning, UNC-CH
For further information please call Rebekah Pennell at (919) 966-5171.
1
3-5
6-24
Budget
25-27
Top 10 List
28
Effective Self-Advocacy
29-37
38-45
46-55
Tupperware
Bowl-A-Thon
Letters to businesses and
parades
SA welcome booklets
Newspaper articles and pictures
State convention
Educate direct care staff to SA
needs
Newsletter
Training on labels
4 easy pieces
Rights
Sticks and Stones video
Dance
Retreats with ACT
Play Let Heaven and Nature
PART I
SHARED VISION - BUILDING AN ORGANIZATION MISSION
STATEMENT
What is vision? A picture that shows what the group is, where the group or a
person wants to go, the Big Picture of Purpose and Meaning for a person or
group.
For James, a vision may be a house of his own, a job and being a contributing
citizen of the community.
Visions create the SPARK the excitement that moves a person forward.
Imagine that you can achieve the things you want in life. What would that look
like to you? What words would you use? Or pictures? Why do you want to do
these things? Or be that kind of person?
Having a pet.
Shopping
Personal Vision
With a partner, describe your personal vision.
Self-Image: What kind of person do you want to be? Describe these qualities.
Example: James wants to be kind, hard working, and independent
Personal Vision
Personal learning
What would you like to learn or do?
Example: James would like to learn how to dance and travel to Las Vegas.
How about you? Why do you want that for your community?
Personal Vision
Home: What would be your ideal living situation?
Example: James would like a two-bedroom home in a friendly neighborhood.
How about you? Why would that be your ideal living situation?
Health: What is your ideal desire for health and fitness.
Example: Jane would like to have fewer seizures and go to the fitness center
two times a week.
Personal Vision
How about you? Why do you desire, and why?
Vision
When you look at whats important to you, it makes you feel good. It gives you a
clearer picture of where you would like to go.
A vision is like a rudder on a boat. It keeps you moving on the right courts.
10
PART II
SHARED VISION BUILDING AN ORGANIZATIONAL MISSION STATEMENT
We have looked at our own personal vision. When we are a part of a group, we
bring our vision to it. It is a part of a greater whole.
James
Sue
Mary
Tom
Group=Wheel
Individual=Spokes
The group is like a wheel and all the members are spokes. When we put all the
spokes together, we get a functioning wheel. It is whole. It will roll forward.
When the whole wheel is together it will work and the group can do things and
really go places.
Group Wheel
James
Mary
Purpose
Mission
Goals
Sue
Tom
Vision
11
Shared Vision
Group
James
James
James
Sue
Mary
Tom
Sue
Mary
Tom
12
Shared Vision
Shared vision helps us to solve problems.
Problem
1994
1997
2001
13
Shared Vision
A shared vision can create energy and hold people together so they can achieve
the vision of the group.
Purpose, Mission,
Goals
14
Shared Vision
It is important to write down what your vision is.
Why?
1) So all members of the group know what it is at all times.
2) So other people will know what your group is all about.
The Mission or Vision Statement of People First
---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- This is called a vision or mission statement of your group.
- The statement is usually short and put into words or pictures that the whole
group can understand.
- The statement is a constant reminder of your shared reason or purpose in
coming together.
How can we start to write this vision statement?
Lets work together in steps to get to it.
Vision Statement
------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
15
PART III
SHARED VISION BUILDING AN ORGANIZATIONAL MISSION
STATEMENT
Writing a Statement
Who are we,
What do we want
to do, and How
are we going to
do it?
Lets Brainstorm
- Throw out words and pictures to describe People First of New Ulm.
Person Centered
innovative
Grassroots
- What words or pictures would describe the purpose of People First of New
Ulm?
Self-determination
Choice
Self-advocacy
- Lets build a wheel structure to start to put together a statement.
Lets take from our lists and
put what you see as most
important.
(Everyone will put one word or
a short sentence on the wheel or
do it in groups if more than 8 people)
Wilbur Neushwander-Frink and People First of New Ulm, Minnesota
16
Writing a Statement
- How does the wheel look? Does it say what the group is all about? Purpose?
17
Project Notes
08-25-98
Meeting 1
Contract
Today was the first meeting of the project. The officers/mentor group met to
discuss the project contact and sign it. We reviewed the following items: Terms
of the contract, this writers role as coach/ally for the project, setting a time to set
a budget for the next year and discussing times to meet.
The group asked thoughtful questions about the project. They were concerned
about recruiting more advocates and guides to participate in the project.
People attending decided to present a short information session at the next
People First general meeting. This would give all members an opportunity to
hear about the project and have a chance to volunteer. After a list of volunteers
is collected, a task breakdown meeting will be held to give people more
information. It will be an opportunity for people to volunteer for various activities
within the project.
A budget meeting/dinner will be held on September 2 to set a budget for project
monies received. After this meeting, the People First treasurer and this writer will
meet with an accountant to set up a __________________ and accountability of
monies received.
This first meeting was an excellent learning experience. As a coach, it is not my
place to do the work and make decisions. One must provide information and
guide people in the thought process of making important decisions. I recognize
that I need to work on this. I saw that I was able to give information and let them
process it. My challenge will be to guide in thoughtful decision-making without
swaying the decision or making it.
18
Project Notes
09-03-98
Meeting 2
Budget
This weeks meeting focused on establishing a budget for the funds for the
project. The officers and mentors for People First of New Ulm were present at
the meeting.
The following items were considered for the budget. The group needed to plan
for $9,000.00. The group set a budget for mileage reimbursement, wage
replacement when working at the retreats and traveling to work with other
groups, materials, parties and celebrations, video resources, tuition for People
First members attending the retreat, meals, accountant fees, facilitators wage,
and phone usage.
People First of New Ulm members decided to not use a fiscal beneficiary to
handle the project money. With the assistance of their coaches and an
accountant, the group will handle project monies received.
The group spent approximately two hours in its initial planning process.
Considerable dialogue was spent on topics such as wage reimbursement and a
facilitators wage. The group opted to pay both of these out at minimum wage for
now.
The group will have a second budget meeting in October to revisit the accounts
and budgets. The treasurer and Project coach will meet with the accountant in
two weeks to discuss how we will document on the money spent. We will need
to develop a system of accountability for project monies. We will also need to
discuss the accountants fee.
The group needed some coaching to work through this part of the project. Many
members have only minimal experience with budget establishment. This writer
used large poster paper to show the group how much we had to work with and
what areas needed to be considered in the budget. This process worked well as
visual guides are helpful. We will ask the accountant to help us develop a
computerized pie graph to visualize amounts for the group.
19
Project Notes
09-23-98
Meetings 3 & 4
Retreat training
Accountant
The retreat facilitators prepared for the second retreat, which will focus on power
relationships and organizing around issues. People First will present a summary
on the leadership aspects of the last retreat. We will also show the video The
Peoples Firehouse. This video focuses on a real-life example of grass roots
organizing. We will show the video and then ask retreat participants to discuss
the various aspects of the video. We will try to focus on the organizing efforts
and leadership demonstrated in the video.
The two People First facilitators enjoy the process of working on retreats. They
actively participate in planning related to the retreat. It is wonderful to see how
people have grown in confidence and in their own leadership skills. I think it is
important for people to have meaningful participation in order to see true growth
and development. I will address this issue in a separate paper on participative or
shared leadership.
Members of the group met with the accountant who will be assisting us with our
financial accountability. We reviewed the budget prepared for incoming project
money. The accountant _________________computerizing our quarterly
statements, and will meet with us quarterly to review ledger statements.
Two People First members will be actively involved in the financial aspects of the
project. They will attend all financial meetings and keep track of the ledger
system.
The project is up and running. It truly is a process. We dont have prior history of
experience with anything of this scope. People are flexible, however, and willing
to learn as they go along. Our challenge this year is to discover ways in which a
variety of people can be involved in meaningful ways. This will require flexibility
and creativity. This will be addressed at our next leadership meeting in early
October 1998.
20
21
Project Notes
10-12-98
The group is now actively engaged in Part II of the Common Vision project
technical consultation. Our first consultation will be in Windom with a group of
people interested in starting a self-advocacy group.
The officer and mentor group has been brainstorming on how to assist other
People First members in becoming involved in the project. At their general
meeting on October 14, Anne and Mike will present on the project. They will
invite people to join them for a special in-service and volunteer session on
October 28.
The project participants would like to start five small work groups where
volunteers could work with trained people. Each group will focus on one area
from around South Central Minnesota. These work groups will personally
connect with the group assigned to them. They will have an opportunity to assist
other groups in starting up self-advocacy organizations. They will also learn to
assist these groups in how to organize around issues important to them.
We are not sure if this process of work groups will be helpful to people. We will
need to ____________________________
The project members also started a checking and savings account today. They
were excited about this and also about getting paid for their work as facilitators.
The pride in their work was quite evident. It was a pleasure for this writer to see
and makes the hard work of the project enjoyable.
22
Project Notes
10-26-98
Participants from the project traveled to Windom on 10-19-98 to talk with people
from Windom and Marshall on self-advocacy. There were approximately 25
people in attendance for this gathering.
Anne, Rodonna, and Jenny presented a short history on when People First
New Ulm started. They gave a few personal stories on how self-advocacy has
helped them grow as leaders. The participants then assisted people attending in
how to start meetings, elect officers, set agendas, set goals, and how to
fundraise. We also role-modeled a mock meeting for attendees to view.
We ended the gathering by asking people attending to gather in a circle, hold
hands, and join us in our closing words, Together were a team, Lets do it! We
had time to network with people informally and share phone numbers.
Anne, Rodonna, and Jenny agreed that this first gathering was successful. We
decided to polish up our notes and posters prior to our next gathering.
On 10-26-98, this writer met with the guide leader to work on a proposed agenda
for the educational meeting for the membership of People First New Ulm. The
meeting will provide people with more information on the project and invite
people to be more active participants in the project. We will look at a variety of
volunteer opportunities available for people to participate in. We will invite people
to become a part of one of the five work groups working with regional groups.
The hopeful outcome will be for the Common Vision project to include a wider
circle of people.
Jenny, the project treasurer and this writer will meet on 10-27-98 to begin her
system of accounting for the project. Various bills will be paid and tracking of
money will occur. Jenny and this writer will meet with our accountant in
November to review the process.
An evaluative summary for the first quarter was completed and sent to our
partnership organization in St. Paul. This summary will be included in a report to
the State of Minnesotas Department of Economic Security. A copy of the
summary is included with the project report.
23
Project Notes
11-02-98
Common Vision General Meeting
The core group of people working in the project had decided to have a general
informational meeting to inform more people about the project. General
members of People First New Ulm were invited to an informational meeting on
October 28, 1998.
Approximately 25 people attended the meeting that afternoon. Mike and Anne
presented an overview of Common Vision. They used large poster paper to
illustrate their points. After this basic informational session, people were invited
to volunteer for a variety of activities. These activities ranged from general
committee work to specific Common Vision work groups.
There was quite a bit of energy and excitement around volunteering. People
wrote their own names on the sign-up sheets and chose their own committees.
All the available spots for Common Vision work groups were signed-up for.
The core members of the group did a fine job at presenting material and
describing volunteer activities. Their growth as leaders increases daily. I am in
awe of the experience these people bring to the group as a whole.
The next step in the process is to meet with individual work groups assigned to
regions. This writer will be guiding two work groups and assisting the other three
as needed.
This writers plan is to have a large work group meeting in early December. This
meeting will focus on the basics of leadership and community organizing. The
group will have an opportunity to develop individual leadership posters and learn
about the spiral model of organizing.
24
October
$ 428.00
25.00
-068.31
-0496.00
-047.91
12.80
-0196.00
November
$ 152.60
25.00
December
$ 100.00
25.00
56.70
Total
$ 680.60
75.00
56.70
68.31
-0496.00
-047.91
12.80
-0196.00
$1274.02
$ 177.60
$ 181.70
$1633.32
25
Check
No.
Check Issued
To
10/27/9
8
10/27/9
8
10/27/9
8
10/27/9
8
10/27/9
8
10/27/9
8
10/27/9
8
10/27/9
8
10/27/9
8
10/27/9
8
10/28/9
8
109
107
CurrentLabels
Chris Janns
Accountant
Anne Roop
184.00
184.00
106
Rodonna F.
184.00
184.00
102
Rita Werner
20.00
104
101
Advocating
Change
D.F.N.U.
105
Jenny Bauer
20.00
103
Wilbur Frink
20.00
110
Kmart
30.18
30.18
111
MBW, Co.
21.98
21.98
108
Totals:
Consul.Fee
s/
Retreats
Acctg./
Legal
Fees
Mileage
Reimb.
Office
Supplies
Reference
Materials
Tuition/
Retreats
Lodging
Meals
Celebration
Expense
Telephone
Charges
Videos
9.45
9.45
25.00
25.00
26.56
46.56
496.00
196.00
12.80
428.00
Total
692.00
12.80
20.00
6.70
25.00
-0-
68.31
21.35
-0-
496.00
-0-
47.91
48.05
12.80
-0-
196.00
26
1254.02
Relax
Take a deep breath and let the air out.
STEP 2:
STEP 3:
STEP 4:
Think of solutions.
7: Being a Part
of the Community
Published by:
STIR Steps Toward Independence and Responsibility
and
Shifting the Power,
projects of the
Clinical Center for the Study of Development and Learning, UNC-CH
For further information please call Rebekah Pennell at (919) 966-5171.
3-4
5-7
8-11
12-22
23-25
26
27-30
Consumer Governance
31-32
33
34
Next Steps
35
36-37
Spiral Model
4.Pratice skills
strategies and
Plan for action.
5. Apply in action
ACT
Advocating Change Together
4.
the problem?
3.
Investigate to get
new information.
CHOOSE IT OR LOSE IT
Time:
30-45 minutes
Goal:
Materials:
Description:
This exercise helps participants understand the significance of choosing
the right issue for their group. Participants consider the overall makeup of
their group and practice selecting issues that address their beliefs as selfadvocates and benefit their group in the long-term. In analyzing who they
are as a group, participants learn the value of choosing issues that build
lasting leadership, on both a personal and group level.
Directions:
Read the following profile of a self-advocacy group: it states who they are,
what their goals are, and what issue they are currently working on. (If all
participants are from one group, they may choose to use their own group
profile for this exercise.) One person from each table must act as
facilitator and read the profile aloud. Have participants pretend that this is
their group. These are their goals, and everyone must act as if they are
working on this issue. When theyve gone through who they are and what
they are working on, use the Issue Checklist to determine if this issue is a
good fit for their group. Ask each group to report their findings to the
larger group when theyre finished.
Group Profiles
12 year old People First group
Staff support of 10 hours per week through a parent advocacy
organization
Office space at the Arc with access to a photocopy machine, a
telephone, and a fax machine
You have 25 members some very active, some not
Your group meets once every week
You have a track record of success with small issues, such as getting
a microwave in your lunchroom at the workshop
$10,000 annual budget through small grants
Members participate in statewide self-advocacy every year
A newer member has personal connections with a local reporter
Most members work at the workshop or get SSDI
YES
YES
YES
YES
YES
YES
YES
NO
Take a few minutes at the end of this exercise to go over the groups
responses. Can participants think of other issues that would be a good fit
for their profile? When considering issues for new groups, encourage
participants to look for issues that can be realistically achieved. A track
record of success, even small successes such as getting a microwave
oven at the workshop dining room, will lead to greater success in the
future.
Action Step: Working in groups, ask participants to name an issue they
have worked on and evaluate it through the Issue Checklist. Have the
larger group discuss whether this was a good issue for the group.
30-45 minutes
Goal:
Materials:
Description:
This exercise provides scenarios where self-advocacy groups are faced
with the need to make important decisions. Through choosing issues,
making plans, and selecting tactics, participants are encouraged to
consider how their decisions and actions will affect their group, and their
community, in the long term. They will also consider the consequences of
other groups developing goals and strategies for them.
Directions:
Read the following scenarios and choose an issue that best meets the
needs of your group. You may choose an issue from the stories below, or
use one of your own. Read the checklist carefully and make sure all
group members are comfortable with the issue they choose.
Facilitators Tip:
The group should agree on time to be spent on an activity. It is
respectful to the group to keep track of this time agreement and
let participants know where they are in the allotted time. It is
okay to go slightly overtime, but anything more than this should
be arranged by group agreement.
Facilitators Tip:
It is more important that everyone shares their perspectives than that
everyone agrees. If differences of opinion arise, it can be helpful to explore or at
least note them. It is important, however, that conflicts not become personal or
attacking. If this happens, restate the need for respect of differences or any
related group rules.
10
Now that you have a list of possible tactics, decide which ones are the best fit for
your issue and your organization. Use the following checklist to help you pick the
best tactics:
Does our organization have the ability to do this?
Does it affect a lot of people?
Does it bring people closer together?
Does it really involve the people in your group, and others you may join in
the issue?
Do people feel strongly about the tactic?
Is the tactic simple and easy to understand?
Does the tactic build your organization? Will working on this tactic in any
way help you in the future?
Is this tactic fun? Will your group enjoy working on it?
After youve considered your strategy and picked your tactics, share your plans
with the whole group. Tell others how you are going to pursue your issue and
what you think it will do for your group and for the community.
11
Supporting Individuals
With Developmental Disabilities
And Family Members
On
Governance Boards
Strategies for Making it Work
By
Jill Flynn
Laurie Powers, Ph.D.
Published by the Oregon Self-Determination Project
June 1999
12
Supporting Consumers on
Governance Boards
??
What is consumer governance?
A board makes decisions about the direction of an organization. Consumer
governance means that people who receive services have meaningful roles in
the decisions made about how services are offered. Consumer governance must
include people who might qualify as consumers, or users of that service. As we
talk about Self-Directed Supports, consumer board members are individuals with
development disabilities or family members who want to be involved in governing
the program.
??
Why have consumers involved in governance?
The word consumer implies a person has choices and some control over the way
resources are spent. While we have been using this term for years, the choice of
services has not been terribly extensive, and the power of individuals to control
how services would be provided has been minimal. Individuals with disabilities
and their family members must have meaningful voices in their own affairs and
decisions made for them as citizens (From Not Another Board Meeting). Any
board that serves individuals should include the very people they serve as their
members.
One crucial thing to remember is that this will only work if an organization
sincerely believes people with disabilities and family members have the right to
be at the table and active in discussions. Governing boards which have
successfully supported consumer members have set up a culture of support
which makes meetings more accessible for ALL its members. An organization
must sincerely buy-in to this goal of creating a culture where members feel
respected and safe to speak up. This means that the organization has truly
asked itself questions like the following:
13
QA
Quality Assurance
How can a governing group make sure that they are on track? How can they
measure how well they are doing in ensuring the meaningful involvement of
individuals and families at the same time they measure how well they are getting
their work done? We have put together two tools to help board members
measure their progress.
First, board members fill out an evaluation of their board process on how
productive they have been and where they need to improve. This gives them the
opportunity to look at what they are doing in the big picture, getting away from
the details they work with each meeting. The next tool is a checklist of things
that should be in place if a consumer board is working well. These Quality
Indicators should be reviewed honestly by the board, as a way of evaluating how
well the organization is working for its customers. Samples of both tools are
found at the end of this document.
14
Successful Strategies
To Recruit, to Orient & Train, and to Support
Consumer Boards
Recruiting
Recruiting board members who know everything about your organization is
basically impossible, so there is always a need to inform people about what it is
you do. The best way to do this is to hold regular, informational forums about the
organization, a couple of times each year. Invite a broad group of people to
attend, making sure to send information about the forum to parents and selfadvocacy groups.
Customers of the organization are also a good source for board members. After
all, they know what you do and they are likely to be invested in making sure you
do a good job. Having customers on the board is not a conflict of interest as long
as they act in the best interest of the organization as a whole. This means that
they care about the organization, are loyal to the decisions made by the board,
and follow the rules of the board process.
16
ORIENTATION
Process:
Set up a way of giving an Orientation to new members.
This might look different in various groups.
One-on-one meetings, or a full day meeting, if a number of new members
will come on at the same time.
Consider filming a video presentation with key information for new
members to view.
Have a consistent policy, with who does what clearly laid out.
Information:
The mission of the organization and its goals and activities (a brief history
of the board, including past minutes and a timeline of events).
Also, provide a short discussion (and info sheet) on the boards current or
upcoming issues.
Clarify the role of the board (as a policy making group) and the role of the
organizations lead staff (as manager of the organization). Also, clarify
other staff roles.
An organizational chart, show the boards committee structure.
A Whos Who On the Board info sheet, with short biographies (maybe
even photos) of each board member.
Provide a cheat sheet of acronyms specific to the issues of this
governance board.
Board member responsibilities: attendance expectations, how to handle
conflict of interest, legal responsibility as a board member, asking for
supports or information when its needed, and financial responsibilities and
the impact of the boards fiscal decisions. Provide a Board Member
Position Description (see sample).
It is important the board realizes how what they do impacts the customers
served by the organization. This can be done by a series of customer
profiles (written or on video), to show how the process works, what it
means to different customers, what it is like being a customer coming in
for service.
Dont forget the basic details like the layout of the office, and where the
bathrooms or the coffee are found. How can they get reimbursed for their
expenses and when? These questions answered up front will strengthen
open communication later.
All boards can benefit from training now and then. Staff to consumer boards
need to spend additional time in this area, in order to give individuals and families
more background information or training in skills which they may not have had
the opportunity to learn yet.
Consider these training sessions for all or some of the board members:
Simply, How Meetings Work not everyone will be familiar with the rules
to follow in meetings or with meeting etiquette. This can be a formal
training or a facilitated discussion.
A discussion about what supports are or are not working (general and
personal supports).
How to be more assertive.
Interpersonal communication, or Communicating when you disagree.
Dealing with the media: who does it and when? What is each board
members responsibility?
Build in opportunities for board members to get involved.
Giving board members opportunities to build upon their skills and
information is one of the best ways to make them effective and motivated
members of the board. Many consumer members have not had access to
diverse opportunities.
Have board members attend workshops or conferences where they can
learn new information and act as a representative of the organization.
Supporting Board Members
Every board member has support needs, and each person (not just those who
have disability labels) is responsible to let their support needs be known. The
organization, in turn, is responsible for making sure that board members get the
support they need to actively contribute to the board. Support needs take
different amounts of time, energy and attention by the person who is doing the
supporting.
The group must build a culture of support, one in which ALL members feel free to
ask for the assistance they need, and one in which ALL feel responsible to help
each other. By building a culture on your board where people support each
other, all members can be more effective.
On the following pages are some strategies which can be used to promote this
culture of support. These are suggestions which have worked exactly as
written in some cases. In others, variations were made when it made sense for
the individuals who requested support or for a particular boards way of doing
things. Be flexible.
18
19
Time.
20
RESOURCES:
1994. Oregon Developmental Disabilities Council. $10.00 plus shipping.
503-945-9941 for flyer. Strongly suggested reading for a full discussion
tool and a valuable resource for any board.
TOOLS:
Checklist of Support Needs from Not Another Board Meeting, a walkthrough tool to use as you set up a support relationship with a board
member, to determine what they need assistance with and what they will
do themselves.
Chart for Board room of Mission and main goals/tasks of board, see
example, which is blown up and posted onto the wall of the board room for
easy viewing.
21
Name___________________________________________________________________
Address_________________________________________________________________
City/State/Zip____________________________________________________________
Home Phone ________________________ Work Phone _________________________
Email ______________________________ Fax ________________________________
yes
child
adolescent, or
adult?
no
5. Please list organizations that you are currently or have been involved in (for
example, neighborhood associations, school boards, People First, fraternal
organizations).
Are you now or have you ever been a member of a board of directors?
yes
no
no
yes
no
10. Can you make a commitment to attend one or two Board meetings every
month and to do committee work? yes
no
If yes, which days couldnt you meet?
23
24
25
26
Program Management
5. We understand what our Program does for individuals and families.
______ Yes
______ No
6. Our program policies are adequate.
______ Yes
______ Some, but not others
______ No
7. We are able to adequately oversee and guide the work of the Brokerage
Manager.
______ Yes
______ No
Suggestions for ways to improve our Board management of our Program:
27
9. Our Board is helping to influence services for individuals and families in our
community.
______ Yes
______ Somewhat, but I wish we could do more
______ Not really
Suggestions for improving our ability to do community, education and
advocacy.
28
On a Personal Level
10. I feel good about my contribution to the Board.
______ Yes
______ No
11. I feel like the effort I put into the Board is worth it.
______ Yes
______ No
12. I have the information I need to fulfill my Board role.
______ Yes
______ No
13. I have the skills I need to fulfill my Board role.
______ Yes
______ No
What do you need to increase your effectiveness/satisfaction on the
Board?
29
CONSUMER GOVERNANCE
Self-Directed Support Programs are led by a governing group of community leaders, at
least 51% of whom are individuals with disabilities and family members. The governing
group is responsible for making sure that the Self-Directed Support Program does its
job of helping customers to determine and direct their supports. The governing group
oversees the quality of the Programs work in carrying out each of its functions, and
develops goals and policies to improve the Program.
This checklist describes the key features of consumer-led governing groups. It
can be used as a guide to organize and evaluate such groups.
Key Activities
Is it
Happening?
YES
NO
Key Activities
Is it
Happening?
YES
NO
31
disabilities.
The governing group matches the
diversity of the community.
The governing group meets regularly
and has a structure (ex. chair,
president, secretary, etc.)
The governing group has a pool of
people who are interested in being
members.
There is an orientation program for
new members.
Information and written material for
the governing group is presented in
straightforward language, pictures,
etc. to make it understandable.
Pre-meetings are held for members
who want more time and assistance
to review the agenda and the last
meetings minutes, and to figure out
their viewpoints and questions for the
upcoming meeting.
Assistance is provided to increase the
participation of members in meetings
(e.g. yes/no question-asking, taking
time to review hard to understand
information, notes on an easel, using
straightforward language, etc.).
Support is given to make sure that
members can attend meetings (e.g.
respite, transportation, personal
assistance).
The governing group regularly
evaluates its leadership and support
for members.
Members have opportunities to take
part in activities to increase their
knowledge, and leadership skills.
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NEXT STEPS
What is the thing you would like to do for yourself or your community?
Write down what youve decided to do.
Figure out the first steps you should take (talk with your group to figure it out).
Share your goal and steps with others.
Decide if you would like our team to call you to help with ideas to reach your
goal.
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LAWS ARE
3) The
talk about the bill
LIST SOME WAYS YOU CAN TELL THE COMMITTEE HOW YOU WANT THEM
TO VOTE ABOUT A BILL:
____________________________________
__________________________________
____________________________________
__________________________________
4) The
VOTE
YES = Bill goes to full House and Senate
36
Bill
NO = bill does NOT become a law
VOTE
YES = bill goes to Governor
6) If the Governor votes NO it is called a VETO. A vetoed bill does NOT become a
law.
If the Governor votes YES, the bill becomes a law.
VETO
Bill
Law
LIST SOME WAYS YOU CAN TELL THE GOVERNOR HOW YOU WANT HIM/HER
TO VOTE ABOUT A BILL:
________________________________________
____________________________________
________________________________________
____________________________________
________________________________________
____________________________________
37