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A Word from the President

October 22, 2010

The Fragile Balance of Freedom and Protection

Dennis W. Felty
Dennis W. Felty
President, KHS

Keystone Human Services has had the great privilege of being part of the community mental health and mental retardation movement since its inception in 1968. At that time, children and adults with intellectual and mental disabilities were routinely incarcerated in large, congregate government institutions. It was common for one hundred people to share a single bedroom, and settings were often unimaginably filthy. Often, people were not provided with clothing. Health care was frequently denied. Children were removed from their families and were often left with no caring and loving relationships. Children and adults were exploited and assaulted, both physically and sexually. Once placed in an institution, it was impossible to get out because there was no recourse or due process.

These circumstances existed in every state within the United States. In Pennsylvania, approximately fifty thousand children and adults with intellectual and mental disabilities were placed in state hospitals and state schools. In America, one hundred years of institutional care has taught us that when we segregate and isolate children and adults with severe disabilities in congregate institutional settings, very bad things happen to people.

Through the courage and powerful advocacy of family members who wanted better lives for their children, Pennsylvania played a leadership role in creating caring and humane community-based alternatives for people with disabilities. Over the last forty years, the number of people incarcerated in institutions has continuously decreased. As an alternative to institutional care, Pennsylvania created a state-wide system of community services and support, which are predominantly carried out by dedicated nonprofit organizations.

Over seventeen thousand individuals with intellectual disabilities moved out of the institutions and are now residing in homes, typically sharing those homes with two to four people rather than hundreds. For many, the transition from an oppressive institutional environment to the community where they are valued and participating members has transformed their lives. They can reconnect with family, make friends, engage in meaningful and relevant activities, feel secure, access quality health care and receive treatment that is relevant and appropriate to their needs. For the first time, they are afforded the full rights of citizenship and protection under the constitution.

Within Keystone's services and supports, each person has a person-centered plan that considers the person's wishes, needs, vulnerabilities, medical status and dreams. One of the most important goals of service is to support people to have as much control over their own lives as possible and to be as independent as possible. Some people may need very few supports while others may need extensive support, services and supervision for the entirety of their lives.

The inherent vulnerability of individuals with intellectual and mental disabilities presents challenges of how to best provide appropriate protection and still support people to lead meaningful lives. The moral and operational challenge is to continuously measure the fragile balance between independence, self determination and protection for each person. This is a complex dynamic and there is no clear and precise solution. It is imperative that we have systemic safeguards and accountabilities.

Within Pennsylvania's system, which serves over 50,000 people in community and residential settings, the Commonwealth's Office of Developmental Programs conducts extensive licensing and regulatory oversight. The Office of Developmental Programs also engages in an extensive visitation and monitoring program. All incidents and events that deviate from regulatory standards are reported to the Office of Developmental Programs, and all incidents that might have an adverse impact are investigated by trained professionals. Serious incidents are investigated by highly qualified third party investigators. All of this operates within the context of supporting individuals to lead very active and meaningful lives within their community.

In addition to the Commonwealth's multi-tiered system of safeguards and oversight, Keystone has very extensive quality systems, staff training and accountability. A significant number of family members who have a son or daughter with intellectual or mental disabilities serve on our governing boards. The role of parent advocates in the governance of our organization is one of the most important safeguards in assuring the balance between self direction and protection remains within ethical and functional bounds.

Intellectual and mental disabilities force us all to confront what it means to be human, and ultimately, what our obligation is to each other. During our lifetime, every one of our families will be touched by autism, intellectual disabilities, mental disabilities or physical disabilities. Disability is an inherent aspect of the human experience, and each of us has a deep obligation to ensure that our family members, neighbors and fellow citizens who are experiencing intellectual and mental disabilities are supported, valued and respected members of our society with the opportunity to participate in all the gifts that our society has to offer.

Dennis


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