Why is the ARC Michigan, an advocacy group for people with developmental and intellectual disabilities, having a hissy fit over two family-initiated projects in southwest Michigan? The ARC Michigan is of the opinion that if the state allows Medicaid funds to pay for services to people with DD who choose to participate in these projects, the state will be going against current trends, departing from current thinking on disabilities, and possibly violating the Americans with Disabilities Act.
This "warning" was issued in two letters from Dohn Hoyle, the Executive Director of the ARC Michigan, to the MDCH. [For an explanation of abbreviations and links to the full text of both letters and the MDCH response, see the end of this post.] The ARC Michigan receives most of its funding from federal and state government grants. [See the ARC's 2012 Annual Report ] Of course the state does not have to ask the ARC for permission before allowing the expenditure of Medicaid funds.
The two family-initiated projects targeted by the ARC Michigan are Benjamin's Hope and AACORN (Autism Agricultural Community Option for Residential Needs). Benjamin's Hope, near Holland Michigan, is a planned community for people with autism spectrum disorder. It is described here on the website of LTO Ventures, a non-profit company that develops communities for people with autism:
"A 40-acre campus designed as a community-based model to provide housing, recreation, vocation and support for 24 residents in six custom-designed homes. It is a private/public model, built with private dollars, and utilizing public funds for direct care. They received 62 applications for the first 8 available residential slots. [emphasis added] The first two residences have been completed, and the community building is nearly done."
Four women moved into a licensed group home at Benjamin's Hope in June, 2013.
AACORN Farm is still in the development stage but has received non-profit status and is looking for property in Kalamazoo County, Michigan. While residential options are being developed, AACORN has started a vocational program. According to the AACORN website, "Tillers International of Scotts, MI has generously offered to let us use their farm and help care for its animals and gardens, and to have arts and crafts indoors while we are raising funds for a farm of our own…The program will run three days per week with just a few participants while we are breaking it in. In September, the program will be offered four days per week and we will be adding more participants." Here is an article from the Kalamazoo Gazette, 4/8/13, with more about AACORN Farm.
It is clear that the years of thought, energy, and planning invested by these families of autistic children are approaching fruition. It is also clear that these two programs have broad community support and plans for residents to be fully engaged in what the broader community has to offer them. So why is the ARC in such a huff?
The ARC is right that these projects go against the current trends and thinking prevalent among government-funded advocacy groups and the government agencies that fund them. Creative ideas for providing services and residential options for those with the most severe and complex disabilities may well be thwarted by misguided and potentially harmful government policies with the support of mainstream government-funded advocacy groups. [See CMS rules limiting choice].
For decades, advocacy groups such as the ARC Michigan have been railing against institutions for people with DD [e.g. Intermediate Care Facilities for Individuals with Intellectual Disabilities or ICFs/IID], despite the fact that such settings are a legitimate choice for people who need that level of care. For years the ARC Michigan has been chipping away at services and residential options provided in settings that serve more than three or four people with disabilities. The basis for this bizarre policy appears to be the faulty assumption that only by limiting the number of disabled people that associate with each other in one place, can we assure their integration into "the community". Not only is this assumption based on tunnel vision, but it is also predicated on a special interpretation of what constitutes a "community" [See "Integration or Isolation? Defining Community Beyond Bricks and Mortar"]
To these advocates, where and with whom one associates is not a matter of free choice or individual need, but is instead a matter of policy applied generally to all people with disabilities and enforced through government mandates:
"We don’t believe that hiding behind language regarding supporting the housing preferences and choices of people with disabilities (or those of their parents or guardians) would shield any new, additional, segregated developments or its funding from being considered discriminatory as segregating persons with disabilities." …Dohn Hoyle, ARC Michigan, 4/30/13
The ARC Michigan claims that using Medicaid funding to pay for services at Benjamin's Hope, AACORN, and similar programs may violate the 1999 U.S. Supreme Court Olmstead decision interpreting the Americans with Disabilities Act. However, the ARC Michigan's reading of Olmstead is faulty. Olmstead does not support the view that congregate settings are automatically discriminatory against people with disabilities. Instead, it supports individual choice. It does not specifically focus on congregate settings in the larger community, such as group homes. Even if one lumps such settings together with larger facilities and assumes that every licensed setting is an "institution", Olmstead still does not prohibit them:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187.
Stated another way:
“As already observed by the majority, the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person — recognizing on a case-by-case basis, that setting may be an institution" [quoting VOR’s Amici Curiae brief]
Personal choices and needs are the governing factors, not the oversimplified criterion advocated by ARC Michigan.
For families living with a severely disabled family member, a utopian vision of a world where everyone, regardless of the nature or severity of their disabilities,can live independently, engage in competitive employment, and live fully integrated lives in "the community" (whatever that means), makes as much sense as a vision of a world where severe disabilities don't exist at all. We need realistic solutions, not over-simplified utopian notions that only serve to limit the range of choices. Creative family and community-based projects that provide specialized services and residential options to people with DD should be encouraged, not prevented from getting the assistance they need to succeed.
Information on the ARC Michigan:
Executive Director: Dohn Hoyle
President: Donald Teegarden
Board of Directors
Letters from Hoyle to MDCH and MDCH to Hoyle:
A short lesson in MichiganSpeak will make reading the letters easier: a CMHSP is a Community Mental Health Service Provider - a local CMH agency that provides services to people with DD and other disabilities. A PIHP is a Pre-Paid Inpatient Health Plan, a regional CMH agency that distributes funding to local CMH's and performs other administrative functions. The AFP is the Application for Participation that assures that PIHP's comply with all relevant federal and state requirements.
Links to full text of Letters:
(a) Letter to MDCH from Dohn Hoyle dated 4/10/13
(b) Letter to MDCH from Dohn Hoyle dated dated 4/30/13
(c) Letter to the ARC Michigan from MDCH dated 4/25/13