Expanding the Opportunities for People with Disabilities to Exercise Power and Control
The representatives of eleven national organizations that forged a common vision for full participation at the Alliance for Full Participation Summit 2005 included many people from the service providing sector. They, together with people with disabilities, family members and advocates, called for two fundamental changes having to do with power and control:
- Public funds expended on behalf of people with developmental disabilities must be under their control and direction and, for children and others who need it, their families and trusted friends
- People with disabilities must be part of all planning, governance, leadership and implementation of the programs that affect us. As SABE has so aptly stated, "Nothing about us without us."
Shifting the control over the use of public funds into the hands of people with developmental disabilities with support from their families and friends represents a fundamental shift in the role of agencies and support providers.
First, there is the issue of role – being really clear about what your role is. If you are not a person with a disability and you have a role to play in supporting their lives, you need to be real clear about the fact that you are in service to people with disability… There are moments, as the movement evolves, particularly now in critical times, when mentorship and coaching is really, really critical. I see some of my colleagues frightened. They are not really clear about their roles.
Bill Bowman, Santa Ana CA, CEO, Regional Center of Orange County
If the moneyfollowed the person, people would be able to choose the people they want to work with them, the people they want to support them.
Tia Nelis, Founding member, People First of Illinois
Increasingly, people with disabilities are exercising different kinds of leadership and power. They are taking positions of influence and using their knowledge to help others learn.
- Aaron Westendorp from Minnesota is "currently involved in a committee that helps young people with disabilities to become leaders themselves. We provide the resources and materials to people in high school to begin exploring their options for the future. People would be leaders by being advocates for themselves and others."
- Tia Nelis is a Self Advocacy Specialist at the University of Illinois at Chicago. "I work in The Rehabilitation Research and Training Center on Aging with Developmental Disabilities, in the Department of Disability and Human Development. I am the Self Advocacy Specialist. I work on choice, rights, and leadership."
- Chester Finn is Special Assistant to the Commissioner, New York State Office of Mental Retardation and Developmental Disabilities. "My job is to make sure that people receive the services, and if they don't, to find out what the problem is, and fix it. One of the things that has been so important to me is employment for people with disabilities at all levels. I am now working with the Commissioner on an internship that will help people with developmental disabilities obtain employment at the state level."
- Duncan Wyeth is an Adjunct Professor at Michigan State University and teaches a survey course on Disability in a Diverse Society. "The focus is not on the medical model but how society deals with disability… I deal with everything from universal design, bioethics and modern eugenics, disability culture, social policy and disability, and so on… I focus on the Holocaust because people do not realize that all those techniques used on Jews and Gypsies were perfected on people with disabilities… So it is a very broad survey class that looks at issues of disability through the eyes of someone with a disability.
There is growing recognition that people with disabilities should not only participate in research but also shape it.
The better question is how we can involve people with disabilities in the first step of research – deciding what to research and how to research it, and deciding whether what we have is a question or is not a question. Researchers know that coming up with the right question is half of getting the right answer.
Hank Bersani, President, AAIDD
It is also important to make sure that people with disabilities receive the support they need to exercise power and control, both in their own lives and in decision making processes. An example of innovative adaptation comes from California.
Making My Own Choice is a real simple little handbook. The book tries to give as much flexibility as possible. It takes you through five major life areas – friends and family, health and safety, living options, and so on. Part of the book gives you the story of someone else and what they did – all real people who made real choices. The other part is where you put in your stuff. The picture book is designed to have you go through the stickers and pick the one that is more representative of what you want to do. We asked people, if you don't read, and you use these pictures, how can we make the pictures more flexible?
Another piece is an adaptation for people who sit on committees. We have people sitting on all kinds of committees and there are no adaptations. So now we are putting together a CD of different pictures and icons. We are field testing them with consumers. Hopefully, people across California will start to use them so that we have a common set. So, what is a picture of an agenda to me is a picture of an agenda to people in the other end of the state. So when a consumer travels and does different things at the local, regional or state level, they have a common understanding of what we are talking about.
Carol Risley, CA Office of Human Rights and Advocacy Services
Challenging the Broader Community to Do Its Job
There are at least two dimensions to the challenge to the broader community in supporting people with developmental disabilities to lead meaningful lives in the community. One is to encourage and insist that citizens and community organizations do the right thing – afford people with disabilities the access and supports to which they are entitled. This means moving to a recognition that the Parks and Recreation Department and its services are not just for those citizens who do not need support, or that seniors' centers are not only for seniors who also happen not to live with a disability.
One of the things that we are working desperately on is to get people who own apartment complexes to be compliant with the Fair Housing Act as far as disability standards. In a lot of ways we are going backwards as far as accessibility goes. We are having to file a lot of complaints against major complexes because there are stairs into it and people are not able to get into them if they have mobility impairments. One of the things that I have been happy to see the Department of Justice coming out strongly enforcing a couple of cases across the country, in putting really big fines in place, forcing people to retrofit.
Bob Liston, Missoula, Montana
We must force all of the legitimate, generic public entities to do their piece. Parks and Rec, community support services, the seniors' centers that are part of many communities have got to open their doors to all people.
Allan Bergman
Allan Bergman
The second dimension is assisting, insisting and supporting people with disabilities and their communities to use what they have. Often this will mean using what they have in combination with public funds, but it may also mean using only what is at hand within the community itself. This means that individuals and families reach out to generic community resources with the support they have. It means supporting employers to make jobs available to people with the most challenging needs, and yet again, demonstrate that sheltered and congregated settings are not needed. It means supporting families to using some of their wealth to invest in home ownership for their adult children with disabilities.
There are pockets of communities that are actually embracing the idea that all people matter, that all people are important, and that people should be able to take the funding that is allotted to them through public dollars and then private money which they earn through employment or small businesses, money that is their income, their own, and use that to purchase things that they want, a life that they want based on generic community opportunities and support.
Pat Carver, Center for Self Determination
The places to look for the most dramatic action are strange ones. In Canada, the First Nations communities. Against all odds, they've done stuff that nobody thought possible. In the largest slum in the world in Mombay, there is likely the most impressive education inclusion at the preschool level that I've ever seen, and doing its work with almost no money These kinds of things are happening everywhere. They are not well supported by policy. People just take their lives in their own hands and just go for it.
Jack Pearpoint, Inclusion Press
I think one of the biggest undertakings is to look at systems other than government to support people to live the way they want to live.
Rebecca Rooker, Parent and Leader of the MN System Redesign Committee
We have just been awarded, as one of the five projects in the country funded by the Department of Labor, to take the lead on what is now being called "customized employment". Our goal is to successfully assist at least twelve of those people to get into part time competitive employment. Each one of the job development opportunities will probably take, based on the literature, between 50 and 100 contacts to create the one potential job carve, job shape, employer match, etc.
Allan Bergman, Anixter Center, Chicago