NOS Magazine is a “news and commentary source for thought and analysis about neurodiversity culture and representation”. For the uninitiated, neurodiversity is a controversial approach to disability that includes the belief that autism and other disabilities are a normal variation of human behavior and should be accepted as a social category on a par with gender, ethnicity, and sexual orientation. According to the NOS Website, “NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.”
NOS published an article entitled "Developmental Disability Community Faces a Housing Crisis" by Cal Montgomery on 4/5/18. The author begins by referring to an article published in USA Today, “Don't let my son plunge off the 'disability cliff' when I'm gone” by Michael Bérubé on 4/2/18, where the father of a son with intellectual disabilities describes the common experience of parents of adults with ID working to create a balance so that their son has opportunities to live as independently as possible with the supports he needs to do that: “Our experiences have shown us how much help people with intellectual disabilities need to live independently. That paradox divides the disability community.”
Bérubé also puts in a plug for “intentional communities” that “integrate people people with intellectual disabilities into communities in meaningful ways, 24 hours a day, 7 days a week…We must nourish and support these social arrangements; they are a powerful social good.”
Intentional communities are one solution (certainly not the only one) to the housing crisis that the author ironically rejects, based on the idea that they are too institutional and therefore should be cut off from Home and Community-Based Services funding and forced to apply for Medicaid funding for institutional settings. There is an undercurrent of resentment toward people who can benefit from and want to live in congregate settings (settings serving more than 3 or 4 people with disabilities together) and whose safety and well-being could be jeopardized in “scattered-site housing”, the ideal setting promoted here for everyone who is not in an institution. It seems, according to the NOS article, that HCBS funds belong to those who want and need services restricted to the setting that the HCBS advocates are promoting. It seems that those with more extensive needs who need something different are taking funding they are not entitled to if they choose to live in an intentional community.
In regard to institutions, the NOS article is misleading. It implies that Intermediate Care Facilities for people with Intellectual Disabilities (ICFs/IID) are readily available to people with more severe disabilities who need more controlled environments. In fact, some states have closed all their ICFs, many have severely limited or ended admissions, and others have made it nearly impossible for individuals needing this level of care to access it. These barriers have been put in place with the approval and support of most of the groups now pretending to promote an ICF as an acceptable alternative to community settings. [In the case of the advocates interviewed for the NOS article, that includes ASAN, the ACLU, IPADDUnite!, and ADAPT.]
Furthermore, the word "institution" is used here only in a pejorative sense that is not shared by individuals and families who have experienced the life-saving services available in these facilities.
In addition, the author disparages Misericordia, a large campus-like setting in Chicago that serves 600 people with intellectual and developmental disabilities both on and off the campus in a variety of settings. Misericordia has built a “community of care” over decades responding to the many and changing needs of the people they serve. You need to see it to believe it - I encourage anyone who is in the Chicago area and interested in the services provided to schedule a tour and talk to the residents and their families who fully support Misericordia and its mission.
The author also puts in a dig at VOR by getting the name wrong and misrepresenting what VOR stands for. I have been a member of VOR for over 15 years.
I sent comments to NOS Magazine to point out inaccuracies and misconceptions in the article. My comments did not make it through the moderation process, so I will publish them here:
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In response to this article:
I have two adult sons with profound physical and intellectual disabilities who live in a group home that provides for their extensive needs in a setting with four other adults with similar needs. I have also been a member of VOR for more than 15 years.
1. Although there is a housing crisis for people with disabilities, Home and Community-based Services (HCBS) can be provided almost anywhere that a person with a disability lives. Nevertheless, CMS has imposed on states and individuals with disabilities the regulation of settings, ie. housing, rather than services. The 2014 HCBS settings rule unnecessarily restricts individual choice and seems to demand full integration into “the community” to justify HCBS funding when the ADA requires integration “appropriate to the needs of the individual”. The most pressing crisis that threatens the system of community care is the low pay and poor working conditions for direct service providers. Raising the pay, improving benefits, and honoring the importance of these service providers is something we can all get behind, rather than spending energy and resources closing programs and dividing the disability community into Us vs. Them.
2. What is an Institution? In Medicaid law, institutional services cover mainly Intermediate Care Facilities for people with ID (ICFs/IID), nursing facilities, and hospitals for mental diseases. ICFs/IID are an “optional” program under Medicaid that originally was a companion program to HCBS (also optional), allowing states to waive certain requirements for ICFs to pay for community care. Nothing prohibits institutional care for those who need it, so why is CMS trying to restrict funding to settings that resemble an institution, when an actual institution is OK? One other point, although an ICF/IID may be as small as a 4-person group home, not all settings with 4 or more people are “institutions” and there is no justification for using this arbitrary number for defining a setting as being too institutional.
3. The name of VOR is VOR! The organization was founded in 1983 as “Voice of the Retarded”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations (including VOR) removed the word "Retarded" from their names and from the discussion of issues related to this segment of the DD population. So when you see the acronym VOR, think “Voice of Reason”, to help you identify who we are. Also, check out “About VOR” for positions and policy statements. We are often misrepresented by other advocacy groups. If you insist on calling VOR “Voice of the Retarded”, then for the sake of consistency, you must also refer to The ARC as the "Association for Retarded Citizens" and TASH as 'The Association for the Severely Handicapped".
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See also:
Letter to CMS from over sixty organizations and advocates supporting a full range of options for people with ID/DD
