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THE NATIONAL COALITION ON SELF-DETERMINATION OR VOICE OF THE RETARDED?
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National Public Policy Makers Must Make a Choice
People with disabilities and parents have joined forces to form The National Coalition on Self Determination (NConSD) in an effort to move federal policy away from its institutional bias and toward supporting the freedom and participation of people with disabilities in the mainstream of life.
The founding of NConSD is the first time self-advocates and parents have joined forces to promote federal policy that support the principles of self-determination (Disability Matters, September 26, 2000) which are based on the belief that people should not have to give up their rights as citizens in order to receive the services they need to live in their own home and work in meaningful employment.
"Self-determination turns the system upside down and puts people with disabilities at the top. It changes the way things are done so that we have choice and control," according to Gail Bottoms, a self-advocate.
The NConSD also supports the values of The Community Imperative, (Disability Matters, September 5, 2000), a declaration refuting all arguments in support of institutionalizing anybody because of a mental or physical disability, regardless of the severity.
The advocacy of the NConSD is distinctly different from the lobbying efforts of Voice of the Retarded (VOR), whose membership consists primarily of a group of parents and other family members whose children and siblings were placed in institutions years ago. VOR is the only national organization lobbying for the preservation of large institutions, aligning with the nursing home lobby, and state employee unions that staff the state hospitals.
Much like the tobacco industry targets teens, VOR realizes new admissions to the institutions are needed to keep them open as people leave through attrition or development of community services. Thus, VOR tries to portray itself as a mainstream resource for families of young children, by advocating that families be told about institutions as a viable option.
"The attitude that isolation in an institution should be an acceptable living option, replicates the attitudes that created the first state hospitals in the 1800's for children with disabilities who were rejected by their communities."
Politically, VOR is influential, and has been so convincing in its plea to our Nation's policymakers that the most severely disabled can only receive needed services in institutions, despite facts to the contrary, the question is being asked, "Is VOR a front for unions and nursing home lobby?"
VOR has far too much influence on policymaking for an organization that seems to consist of only a few hundred members.
"The lobby of VOR defies the self-advocacy movement, and takes no notice of parents who are desperate for their children to realize freedom and control of their own lives."
Over the past twenty years hundreds of self-advocacy groups have grown throughout the United States, and many of its members are people who have grown up in institutions, or kept isolated at home by their families because they were considered "too retarded," to have lives as included members of society. Parents and families weren't listening to the hopes and dreams of their children, so their children found a voice and are speaking up for their civil rights.
"My spirit was dying at home, and I was fighting for a way to live," are the words of a self-advocate from California who was told by her mother she could never live on her own.
As long as the lobby of VOR is a major influence on policymakers, the prejudices against people with disabilities will continue, and the fight of parents like Rebecca Riggs of Arkansas will be difficult.
"For too long we have been quiet, due to exhaustion," according to Rebecca, whose son, Erik, is a young man with Cerebral Palsy.
Erik and Rebecca found the only options Erik had once he finished high school, was a nursing home or an institution. Erik became depressed, quit eating, and fought hard to die.
"There is nothing worse than watching your son die a slow death in front of you," said Rebecca.
Rebecca believes if policy supported her son's right to live and be supported in the community, her family could have avoided years of anguish.
Bill Coffelt, Co-chair of the NConSD, said that during the week of June 11th, NConSD members will be in the Nation's Capitol for their first Washington Initiative, "We will be telling Members of Congress and federal policymakers that we disagree with the prevailing attitude promoted by VOR that some individuals with disabilities are so disabled they can only be served in congregate facilities or institutions."
Coffelt knows first hand of this attitude. In 1989, he had to place his young son in Sonoma Developmental Center, our nation's largest state run institution, because the state of California did not provide the resources for his son to live anywhere else. One day the janitor found Coffelt's teenage son beaten and laying in his own blood, alone.
The lobby of VOR has negatively impacted self-advocates and parents for too long. The NConSD intends on refocusing the energies of our nation's policy makers and legislators on issues that develop the expansion of community supports and services, enabling all people, regardless of the severity of their disabilities, to be valued members of their home communities.
Members of NConSD aren't going to take it anymore.
"More information about the National Coalition on Self Determination (NConSD) can be found at http://www.oaksgroup.org/nconsd or you can contact the NConSD at PO Box 1913, Pollock Pines, CA 95726, Phone: (530) 647-8246, FAX: (530) 647-8246, email is oaksgroup@aol.com
Terry Boisot is the parent of a child with disabilities, serves on the board of directors of Alpha Resource Center of Santa Barbara and The Arc of the United States, and is the Chair of the Board of Directors of TheArcLink. She is concerned about all disability matters and welcomes comments at tboisot@silcom.com
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