Comments continue to come in response to my recent article, espousing that a variety of residential settings are available for people with developmental disabilities. It appears that the comments have come from people who have a family member with a developmental disability or work for an agency that provides services to those in need.
The President’s Committee for People with Intellectual Disabilities, an online group, has been outspoken about the need for more than one setting, citing the unique needs of each individual. Certainly, this subject evokes high-powered civil rights concepts. Some strongly advocate that it is the right of every individual to live in the community. Others, while also advocating that right, point out that we cannot meet everyone’s needs in one residential setting. Thus the need exists for a variety of housing scenarios.
Below, the comments are shared with those who have a personal interest in appropriate settings being available for all people with developmental disabilities.
According to Karyn Walsh:
“In New York State, the Office of People With Developmental Disabilities, in the course of changing from the HCBS 1915 Medicaid Waiver to the 1115 Waiver, is in the process of developing a system of services that complements the full range of needs of those they serve. Person-centered planning, being at the forefront of that revamping of services, should take into account the individual’s choices, and therefore reflect the desire of where one would want to live. Those of us who are parents/caregivers/family members/friends of individuals with DD/ID have been advocating for a continuum of services ‘in the least restrictive setting APPROPRIATE TO THEIR NEEDS’. If that residential placement happens to be in what constitutes an institutional setting, then accommodations should be made with the LEVEL OF OVERSIGHT in place that would prevent situations in which abuse and neglect occur. For example, ACAA, Agricultural Communities for Adults with Autism, have a number of residential programs throughout the US which have been very successful in providing a range of services which include residential and vocational. ACAA communities verbalized their concern in a letter to CMS which states, ‘After the study, we feel compelled to vigorously protest that the section on “HCBS Settings”, as drafted, is likely to invite an extreme and far too narrow interpretation of what is (and what isn’t) a “community based” or “non-institutional” setting. If adopted, this language will likely force closure of several successful, small footprint, agriculturally based campus residences’...(read full letter at http://ac-aa.org/docs/HCBS.pdf ). Therefore all state and federal agencies serving all people with DD/ID must acknowledge that the full spectrum of residential settings that comply with the wording of the ADA should be offered, and that all residential settings must have proper oversight by the quality of care commissions to eliminate abuse and neglect in every residential setting.”
“I should clarify my position...I think part of the issue is setting regulations that restrict settings that COULD BE CONSTRUED as being institutional in nature...that is why I gave the example of the Agricultural Communities residential settings. Part of the person-centered planning process is to fully inform individuals what their current residential options are, and to develop from each individual's input a full range of residential options appropriate to their needs, from 24/7 supervision to several hours a week support. I'm not suggesting we move away from community based residential services to go back to the types of institutional settings that propagated situations like Willowbrook, but by the same token, I do know that for some people small congregate settings that are under strict and narrow interpretations of the Olmstead, might not be viewed as compliant, yet are in fact more ‘appropriate to their needs’. For the majority of the DD population, settings that fall somewhere in between 24/7 supervision and minimal support would fit the interpretation of being ‘in the least restrictive environment appropriate to their needs’, the minority falling on either side of that. So my point is, let’s make sure we know what the parameters of residential service needs are so that the NEEDS OF EACH INDIVIDUAL, from A to Z, are appropriately met. That is the reason that our Office for People with Developmental Disabilities is in the process of selecting an assessment tool that must derive from an interview process what the parameter of residential services needs are here in New York State. We also must ensure that there is an adequate, appropriately paid, direct care force to support people in community settings so that they truly are able to ‘develop authentic relationships with people other than family and staff, have a real job for real pay working alongside people with/without disabilities, and exercise the same rights and freedoms as any other person to experience a full life.’”