Comments continue to come in response to my recent article, espousing that a variety of residential settings e 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 on-line group, has been oustspoken about the need for more than one setting, citing the unique needs of each individual. Certainly, this subjectevokes 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 complement 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 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 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 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, under strict and narrow interpretations of the Olmstead might not be viewed as compliant, 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, lets 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."
In response, Justice William points out that:
“I work for a very rare type of company which has managed to balance the benefits of both institutional and residential settings. I have seen life changing benefits to it's clients dignity, safety, and happiness. I think a home setting with an institutional level of oversight, clinical efficacy and economic efficiency is entirely possible with emerging technologies and the right model of care. Hybridization of these two systems is possible, and we should not get too anchored down to unified aesthetics. I think the fundamental concept in de-institutionalization is that people cannot be easily dropped into statistical pidgeon-holes and flexibility in the model is how you avoid that. Unfortunately, this has also been an (unconscious, I hope) excuse to provide substandard care in many cases. We need to learn how to take our hands off in the right way, and strike a balance between individualization and maintaining standards of care. Obviously, keeping people in real homes is indispensable, but we need to be willing to invest in the (often very expensive) clinical oversight it takes to do that in a clinically effective manner. I fortunately work for a company that goes above and beyond state standards in this regard, but if we are "state of the art" then our art needs some more work. I see this system actually work on a daily basis, but I know I am witnessing a rare example. The only real solution is for society to change it's priorities, which may take a few generations, as opposed to a few years. But we may be the generation that gets that ball rolling, so we certainly shouldn't give up.”
Carol Gandolfo responds to Justice:
“I agree with Justice William that both institutions and residential settings can work. I have worked in both. What does not work is putting agencies in charge of either setting and they abuse their power. In California, we have a perfect example. The Lanterman Act was created to assist individuals moving out of institutions into residential settings and was put in charge of overseeing funding for these individuals. Of the 21 regional center, it has been said that over 50% of these agencies abuse their power. I personally have witnessed numerous abuses by a few, while others work hard at doing the right thing and being ethical. Unfortunately, even a few unethical regional centers cause the State of California millions. When management abuses their power and you find them engaging in using clients to extort careproviders, blacklist those who speak up, give excessive benefits to their contributors while ignoring some of the most needs, blackmail some, accept bribes from others, etc., you have a system that does not work. How sad for the management who takes their responsibility seriously to be associated with such agencies. I hope California is able to do something about this. Many are being hurt by those in this system who think they are above the law. “
Lynne Tamor responds:
“I agree that options like the agricultural communities may be attractive to some individuals who are exercising genuine choice. My concern is that larger "institutions" become self-perpetuating and that people can be z"encourage" toward certain choices in order to make the economics of the institutions work. That is, beds or slots have to be kept full in order for the institution to survive. The same can be true for agencies that manage multiple smaller facilities like group homes.
The people most at risk of ending up where their quality of life is less than it could be are those who are not in a position to strongly advocate for themselve, those with the highest support needs, those whose disabilities make complex communication difficult, and those without access to information.
It is fiction to maintain that the interests of families and staff play into these decisions. It is imperative that this be recognized and taken as part of the process. Only then can the issue of best interests truly be addressed.”
Carol Gandolfo responds to Lynn:
“Lynne - you are right. Unfortunately, it seems that many who put themselves out there as advocates have ulterior motives. Some agencies outside of institutions also "encourage" individuals to make choices that benefit that agency. True "choice" must include the individual and their family, not some agency with financial gain.”
Interestingly, the discussion was prompted by a professional in the disability field who believes that all people with developmental disabilities should reside in small community settings. This concept was made by a highly qualified professional who focuses on the civil rights issue. This writer agrees that no one should be denied their civil rights because of a disability. However, this writer’s position remains that one singular type of residential setting could not possibly meet the needs of people with a variety of severe, yet unique, disabilities. Meeting the needs of the individual must remain the primary goal.