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Dennis W. Felty President, KHS
Keystone Human Services, Annual Meeting 2000
In 1972 a young man came to Pennsylvania to take the lead in creating a comprehensive system of community supports for people with mental retardation. That man is the recipient of the Edna Silberman Humanitarian Services Award this evening and his name is Mel Knowlton. Mel came from working with Wolf Wolfensberger in Encore Nebraska one of the first comprehensive community programs in America. Encore was an incredible crucible of passion and creativity, creating many national leaders to include the likes of Bill West who as the Executive Director of the ARC of Pennsylvania brought the landmark litigation of Penn Hurst vs. Halderman, Brian Lensik who as Commissioner of Mental Retardation in Connecticut would bring Keystone to Connecticut to help with the closing of the Mansfield State Center and Charley Galloway who as Deputy Commissioner of Connecticut helped guide Keystone’s role in Connecticut.
At the time of Mel’s arrival 20,000 people with mental retardation were in State Institutions in Pennsylvania and 12,000 people were in State Mental Hospitals such as Harrisburg State Hospital. People lived in desperate conditions often without clothing, sharing a bedroom with over a hundred other people; people lived in filth, their lives were brutal with torture, abuse and neglect. They lived without the protection of the US Constitution and the bill of rights. Dr Adelstein the 1998 recipient of the Edna Silberman Humanitarian Services Award in partnership with Stan Miller Secretary of Welfare authored the Mental Health Mental Retardation Act of 1966 that set the vision and foundation of the community movement in Pennsylvania resulting directly in Mel’s coming to Pennsylvania.
Soon after Mel’s arrival he heard of our small group at the hospital that was meeting to try to do something about the horror people lived with at the hospital. Janet Kelly who is now Keystone’s VP of Clinical Services was teaching classes on the Nature of Institutions and the change process based on the work of Goffman. Barbara Scheffer a member of our group who was also Director of Volunteer Resources at the hospital wrote a paper called a “Terminal Half Way House”. Mel came out to the hospital to meet with us and I remember him asking do you want money to start a group home. We said “Yes” and that was the first yes in a long series of yes's that would ultimately change the course of the lives of thousands of people. We gave Mel, Barb’s proposal and I think he was rather appalled at some of our ideas and gently offered to help us rewrite the proposal so he would be able to fund it. Charles Dorsey and Edna Silberman joined our group and with myself and others served as founding Board Members of Keystone Residence in 1972. We opened our first home at 2104 Third Street.
Each year I try to share stories about the lives of people we are involved in. Often they are people who have survived conditions that most of us cannot even conceive of and not only have they survived but they have survived with grace, acceptance and forgiveness.
Over these thirty years there has been a series of state and federal litigation and legislation that has affirmed that people with mental disabilities are in fact fully protected by the constitution and also have a right to treatment and supports in the community.
One story that is burned in my memory is of a young man Ill call David. David at age thirty was admitted to a State Mental Hospital even though he was probably mentally retarded. He resided there for about five years and over that time was increasingly brutalized. He began to develop a reputation as a dangerous patient. He was increasingly segregated until he was the only person on the ward with a staff of fifteen. He was often shackled. A special restraint table was built for him. He would be physically overwhelmed by many aids and strapped to the table at his ankles, wrists and waist. He was subjected to a six hour protocol where he would have to submit and not resist for six consecutive hours before being gradually released one strap at a time. In one of the struggles and in his terror he broke the arm of a nurse and criminal assault charges were brought against him and he was increasingly at risk of entering the criminal justice system. One of the advocacy groups learned of his plight and began to work for his protection. There was discussion of a community placement and the staff of the hospital shared this plan and confidential medical information with the local newspaper. The newspaper began a weekly expose on what a monster this man was and how unconscionable the idea of releasing this dangerous criminal to the community was. They noted the further absurdity that this individual's state hospital care was costing the taxpayers over $500,000 per year.
Keystone was asked to become involved and we began staffing the hospital. Plans were made for him to leave and a home was prepared and finally a date was set for his release. There were indications that his hospital staff was seeking an injunction to prohibit his discharge so we sent in a team late in the evening of the day before his discharge and removed him from the hospital. When he arrived at his home that night he sat at his kitchen table and said "thank you".
Im certain you want to know how the story ended. I must tell you we don’t know because it did not occur in 1972 it occurred in July of 2000.
This reminds us that our work and Mel’s work is not done. 3000 people with mental retardation remain in Mental Retardation Centers in Pennsylvania and 2000 remain in State Hospitals.
In addition 13,000 people in Pennsylvania and Connecticut are on waiting lists for services while they are living at home with aging parents. Nationally the demographics of the has created the situation of 100s thousands of baby boomers with mental retardation living at home with elderly parents who are losing their capacity to care for there loved one. Both Connecticut and Pennsylvania have committed extraordinary resources to create services for this group. Pennsylvania alone has committed $500.000.000 in new money over five years with the first funding becoming available this coming January.
Across the country legislatures are struggling with this daunting reality. They are under great pressure not only because of the need but also because of the Olmstead Decision, which was settled in Federal Court in 1999. Olmstead is based on the American’s with Disabilities Act and provides that all people covered under the ADA who are institutionalized or at risk of institutionalization including people with mental illness, mental retardation, physical disabilities and disabilities resulting from failing health are entitled to community services if it is feasible to provide those services at a cost at least equal to the institutional cost. The landmark decision appears to apply to both private and state institutions as well as nursing homes. It may ultimately impact every single person in this room as each of us experiences failing health and are at increasing risk of institutionalization in nursing homes. Olmstead provides the vision and the resources so that each of us might be able to stay at home remaining in our own beds in our own communities, in our own neighborhoods and in our own churches and synagogues being supported by friends, family, neighbors and professionals.
Additionally in Pennsylvania services that have been available to people with mental retardation and not to people with autism are for the first time becoming available to people with autism.
Within our communities the status of children is heartbreaking. In this time of unprecedented prosperity, children have never been at such risk of neglect, physical and sexual abuse, abandonment, poverty and inadequate education and health care. We look forward to a capital campaign that will raise $3,000,000 in community resources to support our work with children
In the last 30 years much has been accomplished but Mel’s work and our work is not yet done. We are entering an extraordinary period of expansion of community services driven by the concepts of choice and self determination where the person using services and their family have increasing control in decisions around the kind and nature of services and supports they want including selection of the agency that will provide those services.
Since we met last year Keystone has been able to create more new services for people than ever before in the areas of mental retardation, mental health, autism, pediatric rehabilitation, nursing services management, specialized medical care, children’s services and home health care. We look forward to the time when all people can be valued participating contributing members of our community.
These changes are at the heart of Keystone’s passion, purpose and desire to create a better world.