Wednesday, December 16, 2015

The DD Act : "Findings" vs. Facts

The “Findings” of Congress listed in The Developmental Disabilities Assistance and Bill of Rights Act of 2000 [the DD Act ] are statements that presumably establish the need for advocacy, legal protections, research and other activities funded by the Act. Among the findings of Congress, however, are statements that are inconsistent with the defining characteristics of people with developmental disabilities. 

By definition, an individual with a developmental disability has a severe and chronic lifelong disability that results in substantial functional limitations in at least three major life activities. This population includes a spectrum of people ranging from those with severe physical limitations who have the full mental capacity to communicate and make decisions for themselves to those with profound physical and intellectual disabilities and high medical needs, as well as people with severe behavioral problems that may compromise their own safety and that of others. When any part of this spectrum is ignored or marginalized, the activities funded by the DD Act can result in harm based on false generalizations and a desire to avoid showing developmental disabilities in a “negative” light.

My sons, who are 30 and 39 years old, are at the most severe end of the spectrum of people with DD. I am particularly sensitive to attempts to minimize the severity of their disabilities to make them appear more capable than they are in the hopes that they will be more easily accepted or that legislators will be more willing to allocate funds for their care and support. Their inherent worth as human beings does not lie in proving that they have a capacity to be productive or independent. To deny the severity of their disabilities does them no favors and increases the likelihood that they will not get the care that they need and that public policy decisions will be made without consideration of the full range of disabilities among the DD population.

Congress has been selective in what it chooses to “find” to justify federal involvement in advocacy for this vulnerable population and the type of advocacy that it will fund.

Here is a the first finding that is listed in the DD Act:

“…disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social cultural, and educational mainstream of United States society…”

While many people with DD have limitations that may be overcome with appropriate supports, others will not be able to overcome their functional limitations any more than they can wish away their disabilities. To include this statement without qualification as a “finding” has contributed to the controversial activities of some DD Act-funded programs that do not acknowledge the full range of disabilities and confuse “group rights” based on false generalizations about people with DD with “individual rights” that are protected by law.

Many of the findings of Congress do, in fact, accurately reflect the state of the system of services and care for people with DD over the full range of disability:

  • individuals whose disabilities occur during their developmental period frequently have severe disabilities that are likely to continue indefinitely;
  • individuals with developmental disabilities often encounter discrimination in the provision of critical services, such as services in the areas of emphasis (as defined in section 102);
  • individuals with developmental disabilities are at greater risk than the general population of abuse, neglect, financial and sexual exploitation, and the violation of their legal and human rights;
  • a substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support and services, including access to assistive technology, from generic and specialized service systems, and remain unserved or underserved;
  • individuals with developmental disabilities often require lifelong community services, individualized supports, and other forms of assistance, that are most effective when provided in a coordinated manner;
  • there is a need to ensure that services, supports, and other assistance are provided in a culturally competent manner, that ensures that individuals from racial and ethnic minority backgrounds are full included in all activities provided under this title;
  • in almost every State, individuals with developmental disabilities are waiting for appropriate services in their communities, in the areas of emphasis;
Here are more “findings” regarding families and communities and their role in caring for and supporting people with DD:
  • family members, friends, and members of the community can play an important role in enhancing the lives of individuals with developmental disabilities, especially when the family members, friends, and community members are provided with the necessary community services, individualized supports, and other forms of assistance; [In my opinion, this does not go far enough in emphasizing the importance of families in the system of care and not just to “enhance” the lives of people with DD. Without the care, support, monitoring of care and services, financial support, and advocacy of families, the system would probably collapse.]
  • current research [as of 2000] indicates that 88% of individuals with developmental disabilities live with their families or in their own households;
  • many service delivery systems and communities are not prepared to meet the impending needs of 479,862 adults with developmental disabilities who are living at home with parents who are 60 years old or older and who serve and the primary caregivers of the adults; [these figures have probably increased substantially since 2000 with the aging of the caregiving population, the limitations on resources, and the poor quality of alternatives to remaining in the family home.]
  • the public needs to be made more aware of the capabilities and competencies of individuals with developmental disabilities, particularly in cases in which the individuals are provided with necessary services, supports, and other assistance; [The public should also be aware of the diverse needs of people with DD and the importance of providing a full range of services, housing, and programs to meet their needs.]
  • as increasing numbers of individuals with developmental disabilities are living, learning, working, and participating in all aspects of community life, there is an increasing need for a well trained workforce that is able to provide the services, supports, and other forms of direct assistance required to enable the individuals to carry out those activities;
  • there needs to be greater effort to recruit individuals from minority backgrounds into professions serving individuals with developmental disabilities and their families.
Finally, Congress makes a giant leap in declaring that,

The goals of the Nation properly include a goal of providing individuals with developmental disabilities with the information, skills, opportunities, and support to—

  • make informed choices and decisions about their lives;
  • live in homes and communities in which such individuals can exercise their full rights and responsibilities as citizens;
  • pursue meaningful and productive lives;
  • contribute to their families, communities, and States, and the Nation;
  • have interdependent friendships and relationships with other persons;
  • live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights;
  • achieve full integration and inclusion in society, in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of each individual;…
People with DD have varying degrees of ability and also vary in their capacity for making informed choices and decisions. Many, if not most people with DD, will not be able to fully or even partially overcome their disabilities, whether or not they are presented with opportunities, information, and support. “Skills” that allow someone to live independently, contribute to communities, achieve “full integration”, etc. are based on ability and by definition people with DD have major functional limitations. Many people find ways to compensate for disabilities in one area with abilities in another.  Accommodations and support may make these goals achievable for many people, but to make a sweeping generalization, without qualification, that the “goals of the Nation” are to “provide” people with abilities they may never have is both arrogant and ultimately harmful to people most in need of care, support, understanding, and protection.

I want everyone to “live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights”, but to presume that this can be achieved by providing individuals with severe disabilities with the skills to overcome their disabilities is not rational.

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