Topics Covered

Training in Developing Choice Making, Self-Determination, and Advocacy
Examining the Health Status and Needs of Older Women with Mental Retardation (Qualitative)
Exercise Adherence Among Adults with Mental Retardation
Trend of the Overweight Rate Among Americans with Mental Retardation
Consumer Survey of Medicaid Managed Care
Preparing Community Agencies for Adults Affected by Dementia
Assessing the Impact of Community Dementia Care for Adults with Developmental Disabilities
Continued Employability of Older Adults with Mental Retardation
Family Future Planning Project
Family Financed Housing for Adults with Disabilites
Evaluating Outcomes of Assistive Technology for People with Developmental Disabilities who are Aging
Advocate Summary

Training in Developing Choice Making, Self-Determination, and Advocacy

Esther Lee Pederson, Tia Nelis
Capabilities Unlimited University of Illinois at Chicago
2002

What We Have Done

1. “Get Organized…the Key to Success”: October 27, 2001, Ohio Regional Spina Bifida Conference (5 self-advocates and 3 family members).
2. “Overview of 7 Habits”: November 5, 2001, Clermont County Social Services (10 professionals).
3. “RRTC Research Conference”: November 15, 2001, Chicago, IL
4. “Using the 7 Habits”: November 27-28, 2001, Indiana Governors Council on Disabilities, Indianapolis, IN (35 self-advocates and 5 support staff).
5. “Overview of the 7 Habits”: December 12, 2001, Jacobs High School, Cincinnati, OH (5 parents and 1 teacher).
6. “Using the 7 Habits”: December 13-14, 2001, Jacobs High School, Cincinnati, OH (30 students and 5 support staff).
7. “Together We Can Coalition for High School Students on Leadership and Employment”: January 8, 2002, Cincinnati, OH (8 school representatives).
8. “Using the 7 Habits”: February 9-10, 2002, Project Leadership, Washington, D.C. (25 self-advocates and 15 parents).
9. Development of a handout sheets describing the resource needs to teach “Using the 7 Habits” (attached).

Upcoming Projects:
1. Meet and train the leadership of a residential program in Cleveland, OH called Welcome House on leadership, self-advocacy and self-determination, date to be determined (Nelis, Pederson, Peterson). Proposing Using Making Choices As We Age Training as well.
2. “Using the 7 Habits”: Dates being confirmed for 30 self-advocates and 10 support staff.
3. Keynote Speaker: ARC of Maryland, June 1, 2002, 300 participants, speaking on “Leadership”.
4. Leadership Program for National Down Syndrome Society National Conference in July 2002 for 75 self-advocates in Nashville, TN.

New Efforts
1. Capabilities Unlimited, Inc. is no longer producing the newsletter “The Community Advocacy Press” due to lack of funds.
2. Effective October 1, 2001 Essie Pederson did not renew a leadership contract with the Franklin Covey Company but continues the training using Capabilities Unlimited license. (This is a much better arrangement for all).
3. Will be working with UIC staff to publish an article on the research completed by this project over the years. 4. UIC graduate student (Joe Caldwell) will be working with project staff to evaluate the effectiveness of this training on the lives of people with disabilities as a part of his doctoral thesis.
5. Put information about the training and participants comments on the web page.
6. Host an open training that people can sign up for from any agency.

Ways You Can Help:
1. Attend the training.
2. Help develop written materials.
3. Suggest ways to reach self-advocates and parents.
4. Make sure what you receive from us is interesting, useful, andunderstandable.
5. Stay on us to keep you informed! Call, write, e-mail…you want your help but we often forget you can because there are so many things going on all the time.
6. Review the evaluation ideas, possibly talk on conference calls or meet with us.
7. Help us teach the training in the part of the country you live.
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Examining the Health Status and Needs of Older Women with Mental Retardation (Qualitative)

Carol J. Gill, Ph.D. & Allison A. Brown
University of Illinois at Chicago
2002

What the Project is About
Questions about health have always been important in research. People who do health research have tried to find out answers to questions such as: “How can we stay healthy as we grow older?” In the past, many researchers looked mostly at men without disabilities. They did not include women or people with disabilities when they asked questions for their studies. Women with developmental disabilities were almost never included in research about health and growing older.
The way we want to do health research now is different than the way it was done before, because we see that there are problems when you leave people out. In the same way that older and younger people can have different health needs, women’s and men’s health needs can be different, and people with disabilities and without disabilities can have different health needs, too. As researchers, we want to start paying more attention to women with disabilities -all kinds of disabilities, not just the physical ones.

One way to learn about the health of women with developmental disabilities is to talk with them in small groups, called focus groups. In focus groups, we can ask them different questions than what the survey asks, and find out more about their experiences and feelings. We can record the information in their own words, too. Together, the survey information and focus group information will help us understand their health needs better.

The goals of our project are:
1) To describe the health problems, needs, experiences and activities of older women with developmental disabilities.
2) To offer information about the health needs of older women with developmental disabilities to everyone who needs it, such as health professionals, family members, advocates and others.
Last year, we looked at information from the focus groups we ran in the first and second year and shared this information with different professional groups around the country. We wrote and published a paper and a book chapter on women’s health and aging with developmental disabilities. In the year ahead, we plan to finish writing papers which will describe what the women had to say about their health, what it means to them as they get older, why we think it is important to study, and what we think could be done to make things better. We also will be writing about how we got the information (our method) and what works or doesn’t work in focus groups with women with developmental disabilities.
As we complete these reports, we will start to put together ideas for training health professionals and others who would like to learn more about the health experiences of women with developmental disabilities. For example, we are thinking about putting together training information which will include:
· Fact sheets
· Short articles
· Lectures
· Video Clips
· Quizzes

How You Can Help:
You can look at the some of the reports and articles we have written. Let us know what pieces you think are most important to write more about, and how to make the information more interesting for self-advocates and families.
Help us decide which ideas will be most important for training health professionals and others who need to learn more about the health of women with developmental disabilities.
Share your ideas with us about the best ways to present this information to health professionals and others.
Later this year, we would like help from women with developmental disabilities in creating our training materials. If you, or someone you know, (a woman with developmental disability) would like to help, please let us know.
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Exercise Adherence Among Adults with Mental Retardation

Tamar Heller & James Rimmer
University of Illinois at Chicago
2002

What This Project is About
Adults with mental retardation tend to have low fitness levels, be overweight, and lead an inactive lifestyle. While many studies have demonstrated exercise benefits and ways to increase participation in physical activity, few studies have used this knowledge to help adults with a life-term cognitive disability. The goal of this project is to improve fitness and health of adults with mental retardation (including Down syndrome) through a general health promotion intervention. This project is to:
Test the benefits of a physical exercise program for adults with mental retardation;
Test ways to encourage long-term participation in physical activities to better levels of physical activity in this population.
The health promotion intervention includes exercise sessions, nutrition classes, cooking instruction, peer support/health behavior classes, and a caregiver health education program. The program meets three hours a day, three days a week for a total of 12 weeks.

What We Learned So Far
So far, 38 participants completed a 12-week health promotion program and 18 participants did not receive training. These are some preliminary findings. The participants who completed a 12-week health promotion reported the following benefits as compared to those who only attend a short-term training:
Felt less pain in their daily activities
Felt more life satisfaction
Reported less barriers to exercise
Improved their attitudes toward exercise
Increased their confidence to perform exercise

How You Can Help
What are the top reasons why you, and other people you know who are aging with developmental disabilities, stopped exercising after attending a health promotion program?
What would be the most useful ways for helping you continue to exercise on a regular basis (three times a week)?
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Trend of the Overweight Rate Among Americans with Mental Retardation

Kiyoshi Yamaki and Glenn T. Fujiura
University of Illinois at Chicago
2002

What the Project is About
Although much attention has focused on Americans who are overweight, our knowledge about the overweight among Americans with mental retardation is limited. It is because a relatively small number of people from a limited geographical area participated in earlier studies. Without the national level data, it is difficult to know if people with mental retardation are at a risk of developing health problems, and to find out if they need any help with maintaining a healthy lifestyle. Thus, in this study, we attempted to answer the following three general questions:
1. What is the overweight rate among people with mental retardation nationally? Is the rate changing over the years?
2. Among persons with mental retardation, who is more likely to be overweight than others? Is it changing over the years?
3. Does the overweight status among people with mental retardation differ from other Americans?

How We Did It
Data: We used the National Health Interview Survey (NHIS) data from 1985 to 2000. The NHIS is a national-level household survey conducted every year by the federal government. After combining the 16 years of data, our analyses were based on the information from 1.4 million Americans who were 18 years and older. Included were over 3,000 people who have mental retardation.

What We Found
· The most recent national level estimate, representing four years from 1997 to 2000, indicated that 65% of adults with mental retardation in the nation are overweight.
· The rate increased from 46% in the late 1980s.
· Across years, the occurrence of overweight did not appear to be different between males and females; and between people 18-39 years old and people 40 years and older.
· A prevalence of overweight found among females with mental retardation, age 18 to 39, was about twenty-percentage point higher than their counterparts in the general population across years.
· The rates for older females (age 40 and above) and for males (regardless of their age) were not different from the American people in general.

In summary, a large proportion of people with mental retardation in the nation appeared to be overweight and the rate was increasing over the years. The overweight occurrence among people with mental retardation did not differ across gender and age. When compared to the general population, young females with mental retardation reported a higher rate of overweight.

How the Advocate Advisor can help
· Do you agree that many people are overweight?
· Are people aware of their weight status or a risk of being overweight?
· What can we do to help them to lower their risks?
· Why do you think that there is a big difference of the overweight occurrence between young females with and without mental retardation?
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Consumer Survey of Medicaid Managed Care

Alan R. Factor, Ph.D. Sharon Davis, Ph.D.
University of Illinois The Arc
at Chicago

2002

What This Study is About
The Arc and the University of Illinois at Chicago (UIC) are working together on a survey to find out how satisfied adults with developmental disabilities are with their Medicaid managed health care plans. We want to learn how satisfied consumers are with their doctor and whether they are getting the health care, special therapies and medical supplies they need. We want to know what people like and dislike about their health plan.

What We Have Done to Date
The Arc identified several states which have adults with developmental disabilities in Medicaid managed health care plans for at least two years. These states include: Arizona, Oregon, Maryland, Tennessee, New Mexico, Michigan, Minnesota, California, Florida, New York, and Texas. The Arc and the UIC prepared a survey to find out how satisfied people in these states are with their Medicaid health plans. The Arc mailed these surveys to 8,000 members in these states. The Arc also put this survey on its web site so that people could download it, fill it out, and send it back.
The Arc received 403 surveys back and entered the data in a computer file. Because Rick Berkobien left The Arc for a new job,
The UIC has been analyzing the surveys of only those 161 consumers who have Medicaid managed health care and who do not have any other health insurance. By doing this, we could be sure they were only reporting about their Medicaid managed health care plan. We presented these results at The Arc’s 2001 Annual Meeting in October:
40 surveys were completed by the person with a disability with assistance from a support person; 116 surveys were completed by a support person only and 5 surveys were completed by people with a disability without any support.
The people with disabilities who were in the survey ranged in age from 18 to 73. Their average age was 34. Most people lived with their families or in a community residence with 6 or fewer people.
41% reported their health was excellent or very good.
Most people selected their Medicaid managed health care plan because the doctor was very good.
However, 32 people said they had a hard time reaching the doctor by telephone and 40 people said it was hard to get an appointment with the doctor when they needed one.
35 people said their doctor didn’t no much about their disability;
24% of the people who needed special medical supplies or equipment said their health insurance plans would not pay for them.
Peoples’ satisfaction with their primary care doctor was related to how much he knew about their disability and how much time he spent with them during an office visit.
Peoples’ satisfaction with their health care plan was related to the helpfulness of the information they received about the plan’s benefits before they signed up for the plan

How the RRTC Advocate Advisors Can Help
The Advocate Advisors can look at the results and can comment on them. It will be especially helpful if the advisors live in one of the states we surveyed or if they know people in these states who can review and comment on the results.

The Advocate Advisors can tell us about any advocacy groups for people with developmental disabilities that are also looking at Medicaid managed care. We may be able to compare our results with what they know.

The Advocate Advisors can tell us what findings people with disabilities and their families are most interested in.

The Advocate Advisors can give advice on the best ways to present this information to people with disabilities, families, advocacy groups, service providers and policy makers.
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Preparing Community Agencies for Adults Affected by Dementia

Matthew Janicki
Phil McCallion, Art Dalton, and DiAnn Baxley
State University New York at Albany
2002

Question: What is our project all about?
We are trying to see how community agencies change their services when someone has Alzheimer’s disease or dementia and how they can adapt their services to help people stay in the community.

Our study was designed to do two things:
1. Conduct a national survey to get general information
2. Create a training model for group homes

We have already:
1. Carried out an international survey to collect information.
2. Developed a day-long training workshop on dementia care
3. Published materials on dementia care

We are now:
1. Conducting a “dementia specialist model” demonstration study
2. Reviewing the data from time #1
3. Collecting data from time #2 over the next few months

Question: What were we supposed to do?
We were to see what community agencies did when someone receiving services from them had Alzheimer’s disease or dementia. We designed a survey questionnaire and distributed it in the United States, Canada and Europe and asked people to complete it. We have studied the information we received and have prepared a journal article reporting what we found. The information was also the basis for our demonstration study.

Question: What are we doing now?
We are studying twenty group homes in which one or more people with dementia live. We have selected the homes and have distributed questionnaires that have been filled out. Each agency giving us information assigned one or two staff persons that were trained by us as a “dementia specialist.” We trained these staff to be trainers for other staff at the group homes. These “dementia specialists” have become resource experts in their agencies. They will help their agencies to make life better for the person affected by Alzheimer’s disease or dementia. We are now reviewing the information received from the group homes. We have also developed a package of training materials and are conducting workshops on dementia and care management. We have developed a workshop curriculum and plan to develop a how-to manual for agencies. We have also set up information on the RRTC website.
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Assessing the Impact of Community Dementia Care for Adults with Developmental Disabilities

Matthew Janicki, Phil McCallion, DiAnn Baxley, & Larry Force
State University of New York at Albany
2002

Question: What is our project all about?
We are trying to see how state developmental disabilities and aging agencies are planning and providing for the growing number of people with dementia in community programs. We also want to find out the costs of providing services to people with dementia. We plan to develop information to help state agencies better plan and fund dementia-related services.

Question: What will we do?
We have identified several instruments that we will have group home staff fill out. These instruments will tell us the amount of time spend on providing help to people with dementia. They will also tell us the cost of this care.

We are now:
1. Testing the instruments
2. Looking for group homes to complete the instruments

Question: What we hope to learn?
How different is dementia related care from other personal care. Also, are homes receiving enough money to pay for the services they provide.
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Evaluating Outcomes of Assistive Technology
for People with Developmental Disabilities who are Aging

Joy Hammel, Tamar Heller, & Glenn Hedman
University of Illinois at Chicago
Susan Nochajski
State University of New York at Buffalo
2002

What the Project is About
Assistive technology (AT) and environmental adaptations can be used by people with developmental disabilities to improve health, ability to do everyday activities, and ability to live in the community. However, issues related to funding, quality of services, caregiving training, access to information and technology, and long term support and training can be barriers to getting and using that technology over time. This 5 year project studies how assistive technology and environmental adaptations are being used by people with developmental disabilities as they age in the community, the barriers they face, and the strategies they develop to use technology in everyday life. We are doing the following activities:
Outcome Study: Follow a group of 60 people with developmental disabilities in Chicago, IL and Buffalo, NY who receive AT to track the process, their satisfaction with it, problems, costs, and how well the AT solutions worked over time for them.
Assistive Technology Long term Advocacy & Support (ATLAS) Study: Deliver a program in which consumers and important others in their lives learn how to identify aging issues and advocate for needed technology or environmental adaptations to help meet these needs. This includes home visits by an occupational therapist and an information/advocacy specialist, networking with other people with developmental disabilities who are in advocacy and leadership roles, and learning how to use the computer and Internet to access resources about rights and options available. Test this program with 60 people from Chicago and Buffalo to see how it works.
Training Materials: Create a series of training and advocacy materials for consumers, families and community agencies on how to use assistive technology and environmental adaptations to meet community living needs as they age.

What We’ve Learned So Far

Our research has shown that assistive technology and environmental modifications do help to keep up or increase people’s participation in everyday activities. People with developmental disabilities are using AT for self care, communication and mobility. They have expressed a strong need for more AT to help them stay in the homes as they age, to access the computer and Internet to meet other people with disabilities to share strategies, and to get out into the community to do social and leisure activities.
Twenty people have participated in the long term advocacy and support program (ATLAS). They have successfully learned how to advocate for needed technology. Many have gotten access to computers and the Internet in their homes and communities and several are now surfing the World Wide Web. Many have advocated for help to adapt their homes and community sites to make them more accessible. One group home tore down their bathroom and replaced it with an accessible bathroom that is now used by everyone that lives there.
We have also found resistance from some agencies and people that work in them to getting the technology people really need. We are working with several community agencies to educate them on people’s right to these resources to live and participate in the community. We will continue to see what happens as more people come into the program and advocate for technology over time.

Advisory Committee Help

As a member of the RRTC Advisory Committee, you can be of great help on this project.
We would like to link people in the ATLAS program with other people with developmental disabilities who are actively involved in advocacy and activism. We are especially looking for groups and organizations that people that will respond to them and actively include them in activities. Can you give us some recommendations on how to do this? Are there any advocacy and leadership activities available on the web?
We are interested in peer mentoring and buddy systems where people link up with other people in their communities, or via the Internet, who are using technology. What are your ideas on how to do this? Would you be interested in being a mentor?
Many people have asked to learn how to access the computer and Internet. We are looking for websites that are easy to access and examples of personal web pages of other people with developmental disabilities. We are especially interested in sites that don’t require a lot of reading. Can you give us some recommendations?
We are looking for examples of home, buildings and community spaces that are really accessible and welcoming to people who are aging with developmental disabilities. Do you know of any in your community that we could feature?
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Continued Employability of Older Adults with Mental Retardation

Harvey L. Sterns, Ph.D. & Elizabeth A. Kennedy, Ph.D.,
Joanna Miller, B.A., Graduate Research Assistant
University of Akron
2002

What Project Is About
This study has been gathering information about work through the use of interviews and surveys. Interviews were conducted with service providers at 10 vocational centers. These interviews involved people who assign jobs and set work goals for adult and older adult workers with mental retardation. We wanted to see how work goals were set and met for adults and older adults with mental retardation. We wanted to see what changes were made for older workers.

What We Are Doing
We are surveying service providers from 20 states who work at the different vocational rehabilitation and occupational agencies. We want to see the kinds of training and jobs adult and older adult workers are getting. We are using results from this ongoing research in developing the new work curriculum.
We will have focus groups from northern Ohio areas. These groups will include 15 service providers and companies. This will also include 15 adult and older adult workers. These groups will talk about how to get more jobs for adults and older adults with mental retardation. The groups will also talk about meeting the needs and improving the working conditions for adult and older adult workers with mental retardation. This could include finding better jobs, switching to a better work schedule, improving interaction with other co-workers.
How the Project’s Information Will be Used
This study’s information is being used to write a training curriculum and technical assistance papers to make work easier for adult and older adult workers with mental retardation. This information will be used to develop a position paper for staff that help train and find jobs for adults and older adults with mental retardation. Finally, this study’s information will be used to write a report on the current trends in the employment of, and the working conditions for adult and older adults with mental retardation. The outline of the curriculum being developed is presented below:

Curriculum
Lesson 1: What is Work?
OUTLINE
I. Let’s Talk About Work
a. Talking About the Work You and Your Friends & Family Members do
i. Where do you work? / Where have you worked?
ii. What do you do/What did you do at your job?
iii. Where do your friends and/or family members work? What do they do at their jobs?
b. What is Work?
c. Why do People Work?
d. What different types of Work are there?
i. Different Jobs People Do
ii. Different Work Schedules People Have

Lesson 2: When Work Changes
OUTLINE
I. When People Might Want to Change Their Work
a. Changing What You Do at Work
b. Changing When You Work
i. When You Work
ii. How Much You Work
II. Retirement
a. What is Retirement?
b. Why do People Choose to Retire?
i. Aging People: Getting Older and Slowing Down
ii. People Want to Spend Their Time Doing Other Things
III. What Do People do when They are Retired?

Lesson 3: Behavior at Work
OUTLINE
I. Behavior at Work
a. What is a Valuable Employee?
i. What does “Valuable” mean?
ii. What does a “Valuable Employee” mean?
iii. When is Someone not a Valuable Employee?
b. Being a Valuable Employee
i. Why is it Important to be a Valuable Employee?
ii. What can You do to be a Valuable Employee? c. Handling Difficulties at Work
i. When You have a Bad Work Day
ii. When You have Problems with a Co-Worker/Customer
iii. When You have Problems doing Your Job
iv. Getting Help When You Need It

Lesson 4: Having a Job You Like
OUTLINE
I. Having a Job You Like
a. What is the “Perfect” Job for You?
i. What kind of work do You like to do?
ii. What do You like about Working?
iii. What can You do at Work?
1. Training You have had
2. Skills You have learned on the Job
II. Making Your Job into a Job You Like
a. Working with the Job Coach and other Mentors
b. Being a Valuable Employee

Lesson 5: Changing Jobs
OUTLINE

I. Changing Jobs
a. Knowing When It is Time to Change Jobs
b. Making the Change Part of Your IP/IHP
c. How to Quit a Job
II. Losing Your Job
a. Getting Laid Off
b. Getting Fired
III. How to Find Another Job
a. Choosing a New Job
b. Applying for a New Job
c. Interviewing for a New Job
IV. Succeeding at Your New Job
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Family Future Planning Project

Tamar Heller & Alan Factor
University of Illinois at Chicago
2002

What This Project is About
This purpose of this project is to support family caregivers and individuals with developmental disabilities in planning for the future. It is important because:
· Many individuals with developmental disabilities live at home with their families and about a quarter of family caregivers are over 60 years old.
· Individuals with developmental disabilities are likely to outlive their parents. If planning is not done ahead of time, individuals might end up in emergency residential placements.
· Money left through an inheritance might not go towards the individual’s needs or may cause the individual to loose their government benefits and other services.
· Other family members, like siblings, might not be prepared to become the primary caregiver.

Planning is difficult. It is emotional and legal/financial planning is very complicated. It is sometimes difficult to find services and there are long waiting lists. Also, when families do plan for the future, they sometimes do not include the individual with a disability in the planning.
Our project supports families in planning by offering workshops every month for seven months. Each workshop has a different topic. Both family caregivers and their relatives with developmental disabilities attend the workshops. We use the parts of the RRTC Later Life Planning Curriculum and co-facilitators from People First for the groups for people with disabilities. One of the goals of the workshops is for families to develop a vision for the future and write this down in what is called a letter of intent.

What We Have Learned So Far
We have done three groups of workshops. 34 families attended these workshops. About 40% of the families were African-American; 40% were White; 20% were Hispanic. The average age of the family caregiver was 65 years old. Prior to the attending the workshops the majority of families had not made legal, financial, or residential plans. We also have a control group of 38 families for the research. These families attended one workshop on legal/financial planning, but did not attend all 7 workshops. We survey families and people with disabilities before the workshops begin and then follow up with them one year later. Outcomes so far:
· Looking at the surveys we have so far, families who came to the workshops made more financial plans and developed a vision for the future.
· One group of people with disabilities started their own People First chapter.
· Family caregivers who went through the workshops are now leading workshops within their agency.
· Three families went on waiting lists for services and two individuals with disabilities moved into residential placements.
· With the help of the families in the project we developed a Future Planning Resource Guide for Illinois.
We just started 3 more groups in Chicago. We also received a grant from the Department on Aging to do groups in rural southern Illinois this spring.

How You Can Help
Most families brought their relatives with disabilities to the workshops. However, what can we do to include them more in future planning?
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Family Financed Housing for Adults with Disabilites

Alan R. Factor, Ph.D.
University of Illinois at Chicago
2002

What This Study is About
In the United States, nearly 87,000 families are on community agency waiting lists for housing. Housing is a big worry for older parents because they want to make sure their relative has a good place to live after they die. Many families are setting up their own housing for their relative with a disability and more families may also want to do this.
The purpose of this study is to learn about the different ways families have set up and paid for housing for their relative with a disability. We will mail surveys to about 50 families across the United States who set up their own housing for a relative with a disability. We want families to tell us what financial and legal plans they made to set up housing and support services for their relative with a disability and about future plans they have made to be sure that their relative with a disability will be okay when they are not around anymore. We also want to learn how happy they are with the house and with any services they use. We will also find out about government programs that help families pay for the house. We will use what we learn to write a guidebook that will make it easier for other families to set up housing for their relative. We will also suggest ways the government can help families who need housing for their relative.

What We have Done to Date
We have found 48 families to be in the research study.
We wrote stories about the study that were in The Arc Today, the ADDVANTAGE, and the Maximizing Human Potential newsletter from the American Society on Aging.
We prepared and distributed fliers about the study to staff, families, and self-advocates at training events and at conferences.
The advocate advisors also gave us the names of families to contact about the study.
We called service providers, attorneys, and others who work with families that have a member with a disability to ask them if they knew of any families who could be in our study
We found out about different government and private programs that help families and people with disabilities pay for housing.
We had to make a consent form that followed the University's new rules to make sure families would understand what the study was about and would be aware of any possible risks from being in the study. The University approved our new consent form on June 28, 2000.
We had a focus group here at UIC in October, 2001 with people who had been able to develop housing for their relative with a disability. They talked about the problems they had and the things that worked well. We used what they told us to help us make a questionnaire for our study.
We wrote our questionnaire and have been testing it by calling up some people who have created housing for their relative with a disability and asking them the questions. We are also asking them to tell us what they think is good about the questionnaire and what they think we should change.
How the RRTC Advocate Advisors Can Help
We would like the Advocate Advisors to review our survey to let us know if it asks the right questions.
Advocate Advisors can review our guidebook when it is written to make sure it will be useful to families.
Advocate advisors can tell us the best way to get the study results to families, advocates, service providers, and policy makers.
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Advocate Summary

Sharon Davis, Ph.D.
The Arc of the United States
2002

What we did last year
We completed a publication titled “Pooled trusts for people with disabilities: A guide for families.” It was reviewed by experts and advocates. Copies are being printed now. Information on pooled trusts was obtained from various sources including the Internet. Thirty-five pooled trusts were identified, contacted, verified and listed in the pooled trust guide for families. We invited two dentists to write a report on aging and oral health care. It was also reviewed and is being printed. We sponsored a series of workshops on pooled trusts at The Arc’s national convention in New Orleans last October. We are helping families plan for the future and helping chapters of The Arc that are interested in establishing a pooled trust program. The family planning survey data was compiled and analyzed and a report was published in The Arc’s newspaper. 223 families responded to the survey.

Plans for this year
We will draft a new handbook on family future planning modeled after A Family Handbook on Future Planning published by The Arc. · We will produce an aging report on assistive technology and environmental interventions and one other report to be determined. · We will plan for workshops on future planning and/or aging at The Arc’s convention in Columbus, Ohio in November.

How advocates can help
Advocates can tell us what topics they would like to have us write about in the handbook on future planning. Advocates can review and give feedback on various parts of the family handbook. · Advocates can review and give feedback on the aging reports. · Interested advocates could help conduct a workshop at The Arc’s convention.
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