A Fundamental Dynamic – Power, Control, Empowerment
Achieving a meaningful life in the community – home, learning, working, and relationships – fundamentally involves dynamics of power and control. If people with developmental disabilities are supported to have homes of their own, engage in lifelong learning that enables them to participate in and contribute to community life, earn a living and contribute to the economy, and enter into real relationships, then, they gain power and control over their own lives and in the eyes of others.
At the same time, the means by which people are supported must also enhance their power and control over their own lives. If having a meaningful life in the community is the outcome, then self determination is a fundamental way to achieve that outcome.
The development of community services and a commitment to a meaningful life in the community has involved ideas and practices that are at least intended to expand the scope of individual choice, power and control. Individual program and training plans started as pieces of technology that helped professionals organize their activities so that individuals received focused, coordinated and consistent support.
Over time, however, those approaches evolved to focus on the desires of individuals, with the support of their families and friends, for the future. Approaches such as personal futures planning became tools whereby individuals and their supporters could organize supports toward their own individual ends.
Similarly, there have been significant shifts in the way that funding flows to support individuals. The bulk of government funding still funds service providing agencies and their programs. Significant changes however have emerged which permit individuals to have more and more control over how the funds they receive are used.
Discussions about power and control have been advanced by the focused work of the Center for Self Determination. The Center has identified the following Principles of Self Determination:
- Freedom – to live a meaningful life in the community.
- Authority – over dollars needed for support.
- Support – to organize resources in ways that are life enhancing and meaningful.
- Responsibility – for the wise use of public dollars.
- Confirmation – of the important leadership that self advocates must hold in a newly designed system.
These principles require that individuals must have the authority, power and resources to control their own destinies. This includes the authority to plan their own futures, and directly negotiate for funds which will assist them in realizing their dreams. It includes the fact that the individual is aided and abetted in planning and negotiations by those people (family, friends, advocates), and only those people, chosen by the individual.
A focus on self determination involves empowering individuals – arming individuals with the tools they need to control their lives. We have also gained an increasing understanding of the need to empower communities. One of the unintended outcomes of the growth of the human services sector is that individual citizens, neighborhoods, and community organizations have come to see the issues facing people with developmental disabilities as being solely the concern of government and agencies.
Video: Beyond Boundaries (1992)
An inclusive and challenging camp experience brings individuals with and without disabilities together to demonstrate the strengths and abilities of young adults with disabilities in a peer supported learning environment.
A Focused Vision with Empowering Supports
A focus on real home, real learning, real work, and real relationships, coupled with a full understanding of empowered individuals living in supportive communities, defines three dimensions to a focused vision for the future.
- Community Life. People with disabilities will live as vital and integral members of our community. They will be supported as members of the community, rather than clients of programs or consumers of services. They will have homes of their own, participate in inclusive and useful learning, contribute to the social and economic life and the community and be fairly compensated for that contribution, and enter into friendships and relationships that enrich their lives.
- Self-Determination. People with disabilities will determine their own futures, with appropriate assistance from families and friends. Public policy, including funding, and service organizations will aid and abet individuals, their families and friends to determine their own future and obtain the supports required to realize it.
- Community Capacity.C ommunities and citizens will see themselves as competent and willing to become involved in the lives of people with disabilities. People with varying abilities will reach out to one another in mutual aid. All the typical resources of communities will include people with disabilities as respected members of the community entitled to full citizenship.
Video: Shifting Patterns
The results of a national survey about best practices in "empowerment" and "self advocacy" are presented in these two videotapes. The terms were not new when these videos were produced in 1992 but the concepts they represented were a shift in discussions about people with developmental disabilities.
The Big Leap – One Agenda
The advances of the last century consistent with supporting people to live meaningful lives in the community are significant. In many ways, however, they are still add-ons to old systems and ways of thinking. Two competing systems continue. The challenge is to take the big leap and consolidate resources behind one agenda.
The last decades of the 20th Century saw many advances in line with this new way of thinking. Institutions started closing at impressive rates.
More and more children experienced an inclusive education. Young people without disabilities no longer grew up and went to school in a world without people with disabilities.
More and more families were supported to stay together, rather than be split apart because of the lack of support. People were supported to not only have homes of their own, but to own homes of their own.
More and more people with more challenging support needs were supported to work in the community and to make significant contributions to community life.
I have one daughter who does not have a disability and a son who does. The interesting thing is that we are just living a typical life. We just got rid of therapy and got on with living a typical life. He plays softball, he's in Cub Scouts, and he's involved in church. He's involved in typical nine year old stuff. I don't want anything different for him than I do for my daughter… It is not difficult. It is liberating.
Tracy Rao, Parent, Alabama
My son, J Paul, who has the label of autism, is living in his own situation now, and it is solely because of Partners in Policymaking. J Paul is himself a graduate. We have our own place in the country and he has his own place there. He's thinking about his own business. He does to the doctor. He goes to the dentist. He does all these things by himself. If I had not been to Partners myself, I would have never known this was an option. We did not know it was even do-able. Partners created a vision for all of us. It is really amazing. It is a life altering.
Jayne Chase, parent, Alabama
People are working in the community, in real jobs, and participating in the community all over the place in ways that most of us would say, "well, that couldn't be done" but people are doing it. It is not as common as it should and can be, but it is happening all over the place.
Jack Pearpoint, Inclusion Press
In many ways, these advances have not meant a fundamental change in how things get done on a day to day, community by community basis. Despite decades of court cases, institutions remain open. Children are still routinely institutionalized across America. Some states are stuck in the service models that pre-date A New Way of Thinking. Gains made are easily lost because of shifts in leadership or funding. Empowering processes have become tools of disempowerment.
The National Association of Rights Networks has been talking about calling for a moratorium on the placement of children and youth with developmental disabilities in state institutions nationally. At least eight states now have essentially declared a moratorium in their states and on the other hand there are eight states that are putting a lot of kids with developmental disabilities in state institutions each year, including this year and last year. There are some other states in between.
Lynn Breedlove, Wisconsin Coalition for Advocacy
Remember, this is a state which is time warped in 1985, The state still spends two thirds of its money on institutions, one third in the community. The standard community program is an eight bed group home with a day program, sheltered workshop, sheltered employment, and that's it.
Allan Bergman, Anixter Center, Chicago
We have lost track of that basic part of the American dream, that people want a place of their own. When the federal government went away from that project, everybody dropped the ball. There are a lot of industries in local communities that support affordable housing, and we can mobilize all sorts of people.
Jean Bowen, Western Connecticut Association on Human Rights
Self advocates started talking about individual program planning. Typically in the past, some professional would sit down and say "you want to do this, right?" And everybody signs on the line, and we all think we are happy.
Carol Risley, CA Office of Human Rights and Advocacy Services
We are seeing over the evolution of self determination that it is being compromised, and that the idea of consumer directed services, self directed services, are replacing the notion of self determination. Self determination is about having a meaningful life in the community which self directed services would surely be a part of it but life is not about just services. We are concerned about the whole movement of people being equal participants in their community, and people being valued in important ways, is being replaced by people directing services offered to them by providers of services.
Pat Carver, Center for Self Determination
Developing a Common Agenda
A conference in the autumn of 2005 illustrates how eleven national organizations concerned with issues facing people with disabilities can work together to develop and advance a common agenda. The Alliance for Full Participation's 2005 Summit brought together over two thousand people with disabilities, their family members and people who work alongside of them.
Two statements came out of that gathering. The first was by SABE (Self Advocates Becoming Empowered). The founding groups were looking for a statement of priorities for the future, and SABE gave a clear direction – Just Do It!! The "it" included the following:
- Get rid of the infamous and hurtful "r" word, do not label us. We will not put up with the "r" word continuing as part of an organization's name even as initials. If you are working with me and for me then do not disrespect me.
- Close institutions
- Get us real jobs. Close sheltered workshops
- Give US the money to live OUR lives. Money follows the person means it is OURS not programs
- We have the right to make our own decisions with or without the support from others. WE CAN RUN OUR LIVES. You receive millions of dollars in our name. We want to control this money. As we are the EXPERTS.
- Support our movement. IT IS OURS.
In response, the diverse group of leaders at the Summit outlined what they think must happen to make the vision of full participation a reality:
- For states that still fund public and private institutions, we want to see a plan to close them over the next few years, and people with lifelong disabilities helped to live in communities, in regular houses and regular neighborhoods. Starting today we expect all states to stop placing children in institutions and segregated residential schools.
- People want real jobs with real pay, real businesses and volunteer opportunities, not sheltered workshops and day programs. Just because a person has a disability does not mean that person cannot contribute to our communities.
- Families with sons and daughters with lifelong disabilities often need some support to have equal access to full and rich family lives. Having a child (who may be an adult now) with a disability must not force a family into poverty or constant, lifelong worry. While some have support to lead decent lives, others have not and are isolated and feel abandoned by America. Everyone who needs it must get the support they need.
- 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."
- The term mental retardation has become hurtful. Stop using it! Words hurt and labels limit human potential. It is un-American. Try calling people by their name.
- 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 who have chosen to work in this field directly with people with developmental disabilities should be paid a decent wage with benefits; they should not have to work two or three jobs just to support their families. This is important work that must be respected.
- Medicaid is the vital lifeline for people with developmental disabilities. Medicaid reform must protect access to this program, promote inclusion for people in their communities and empower citizens to control the funds spent on their behalf.
- Inclusive communities are part of the solution. Inclusive communities support all people, and make limited public funds go farther, to help those in need.
- America is changing and becoming more diverse. We must understand and honor this diversity, and include all people in planning, governing and participating in communities.
- Poverty limits human potential. Jobs, opportunities to start businesses, build assets, and be a part of communities, help all Americans.
- People with intellectual and developmental disabilities and their families are often pitted against people with other severe, chronic and lifelong disabilities in American politics at all levels. We want to work toward the same ends as other people with disabilities. Together. We speak for ourselves and welcome positive coalitions with others.
A Common Vision
These statements positively move these disability organizations further away from the maintenance of two systems – one of segregation and exclusion, the other of inclusion and self determination – and toward a system based on community and inclusion. There is a united call to close institutions, once and for all. Self advocates call for the closure of segregated programs. The response from leaders suggests choices for inclusion and contribution in the community should be supported. All agree that poverty is a major barrier to participation. All agree that public funds should be under the control of those receiving the support.
Efforts to forge a common vision based on a meaningful life in the community also suggest the power of working together within the disability community and within the broader community. The competition for scarce resources within the disability community is a source of conflict and division. The competition for scarce resources between the disability community and other vulnerable groups is a source of conflict and division. The issues identified in the Summit 2005 statement, among many others, can provide the basis for common cause with others – poverty, lack of adequate housing, the need for sustained personal support, and so on.
At this time, looking at the national public policy perspective, there is not any question that the most important issue facing us is the future of Medicaid. It is time to reform Medicaid, especially if we do it with the vision and the perspective on how to make this multi-billion dollar program work better for people with disabilities, and work for more people with disabilities because there are so many people who are Medicaid eligible that are on waiting lists now for literally life saving type services. It is almost impossible picturing ourselves wanting to maintain the status quo.
Paul Marchand, Disability Policy Collaboration
One of the things that Katrina and now Rita is doing is bringing together coalitions of people who have similar issues that have nothing to do with disability. So we have people who are poor, who have disabilities, who are elderly, who are single moms that are coming together in fighting for the same issue. The important thing is that we don't fight each other, that we fight together, and we fight to make sure we all get the services that we need, not that one group gets services at the expense of another.
Bob Liston, Missoula, Montana
One of the most important things that needs to happen if we are going to move forward as a disability community is that we start practicing the inclusion that we all talk about. If we do not come together as one disability community and stop fighting each other for pieces of the pie, and look at increasing the pie, changing the pie, whatever we need to do, we are not going to go anywhere.
Marsha Katz, Montana ADAPT
We need to have a means by which to build relationships and connecting people. The way that we move the agenda forward is by constructing a world and a framework that is bigger than us.
Bill Bowman,Santa Ana CA, CEO,
Regional Center of Orange County
We need to look at this movement as a civil rights movement rather than a disability rights movement. And to really look at not requiring people to be impoverished. A lot of people with disabilities are impoverished and they are not treated as equal citizens.
Rebecca Rooker, MN System Redesign
…and as a disability movement we need to integrate ourselves more into other aspects of society.
Steven Brown, University of Hawaii