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The National Council on Disability puts residential care in jeopardy

January 14, 2013

By David Kassel

We are concerned that a report on deinstitutionalization issued last month by the National Council on Disability (NCD) could put pressure on lawmakers and state officials to close vital facilities for people with developmental disabilities, ranging from group homes to the Southbury Training School.

The report and “Toolkit”  (an online how-to manual), titled “Deinstitutionalization: Unfinished Business,” takes a radical anti-institutional position that facilities with more than three people living in them should be closed.  In essence, the NCD is calling for shutting down not only facilities the size of STS, but most of the group homes into which STS residents are currently being transferred.

Here’s the first sentence of the NCD report, which lays out the scope of the agency’s position:

The unfinished business of closing state-run institutions and other public and private institutional settings that have traditionally served people with intellectual disabilities and developmental disabilities is an important first step and should be a top public policy priority in every state where such institutions exist. (my emphasis)

In the report, the NCD defines an “institution” as “a facility of four or more people who did not choose to live together.”   

The NCD is an independent federal agency that advises the president and Congress on issues concerning the disabled, and, as such, has a potentially powerful influence on federal and state policymaking.  

The broad scope of the NCD’s anti-institutional agenda is surprising because private providers of group homes have been among the most vocal advocates of closing large state-run facilities.  Now, it appears, the NCD is lumping most of the facilities operated by those providers in with the larger state-run facilities, and contending they must all be closed.

Equally concerning is that the NCD seems to be focusing most of its anti-institutional criticism on Intermediate Care Facilities (ICFs) for the developmentally disabled.  ICFs tend to serve the most profoundly disabled people and must meet more stringent federal standards for care and treatment than do most group homes.  STS is an ICF,  and there are also approximately 70 small, privately operated ICFs operating in Connecticut.

The NCD report characterizes ICFs — even the small ones — as providing “a regulated program of services in a formally certified setting.”  This means, according to the report, that residents in those facilities are “still living an institutional life.” 

In other words, the NCD appears to oppose formal certifications or standards specified in federal regulations for staffing, treatment and other aspects of care in ICFs.  Those standards make those facilities too institutional, according to the NCD.  That raises the question whether the NCD is proposing an unregulated system of care for people with developmental disabilities.

In calling for the closure of all of these residential centers of care, the NCD does not appear to suggest what would replace them.  In Connecticut, for instance, there were more than 1,000 people with intellectual disabilities who were waiting for residential placements as of September, including 57 who were deemed emergency cases, according to a DDS online report.  Many of these people have been waiting for these placements for years.

We have long contended that the administration’s current policy of moving STS residents into community-based group homes is only making the waiting list longer for others who are seeking residential care.  Yet, the NCD is now contending that most of the existing community-based residential infrastructure should be dismantled. 

The VOR, a national organization that advocates for a continuum of community and institutional care for those who need it, last month had this to say about the NCD report and Toolkit:

[The] NCD calls for the closure of facility-based homes of four or more people when families and legal guardians are nearly universally opposed to such closure. This is irresponsible given the widespread, well-documented tragedies associated with under-funded and ill-prepared ‘community’ programs for individuals with profound needs. NCD has put its most fragile constituency at great risk of harm.

Among the institutional closure strategies listed by the NCD is something that was done at STS many years ago: “close the front door.”  The NCD Toolkit states that a strategy of blocking new admissions tends to reduce opposition among families when the decision is made to close facilities.

Other closure strategies listed in the NCD Toolkit include:

  • “Define the choice (over closure) as not ‘if,’ but ‘when’ and ‘how,’”
  • “Be clear that living in the community is a civil right,” and
  • “Build your case with faces, not facts.”

In our view, these strategies demonstrate a lack of interest in thoughtful debate or discussion over how to provide the best possible care for people with developmental disabilities.  For example, the Toolkit’s elaboration on the third bulleted strategy above states: “‘Faces not facts’ are important drivers of the discussion and the community’s support….”

It’s unfortunate that the NCD believes it needs to downplay facts and appeal to emotion in order to carry out its agenda.  And the strategy of portraying community-based care as a civil right appears to ignore the rights of those who will lose their longtime homes as those facilities are closed against their wishes.

The family members and guardians of the residents at STS are in the best position to determine the type of care that is in their loved ones’ best interest.  The federal Developmental Disabilities Assistance and Bill of Rights Act recognizes that fact in stating that guardians and family members should be considered the “primary decision-makers” regarding the services and supports such individuals and their families receive, including where the individuals live.   Moreover, federal Medicaid Act and regulations state that all persons eligible for care under the Act must be given “the choice of either institutional or home and community based services.”

We hope people will contact their elected representatives at the state and federal levels to let them know that the NCD’s deinstitutionalization agenda will take us in the wrong direction and subject people with developmental disabilities, as the VOR says, to great risk of harm.

A list of our current Federal Elected Officials (Senators and Representatives) is available at www.usa.gov/Contact/Elected.shtml.  The list Connecticut State Senators and Representatives is also available at www.cga.ct.gov/

The NCD as well can be contacted by phone at at 202-272-2004 (Voice), 202-272-2074 (TTY), and 202-272-2022 (Fax), or by email at ncd@ncd.gov.  You can also write to Aaron Bishop, executive director of the NCD, at 1331 F Street, NW, Suite 850,  Washington, DC 20004.

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4 Comments
  1. Thank you so much for bringing this to our attention. I can’t believe the NCD actually put those directives to “paper”! Is anyone “home” there”?! Once again, we need to contact our representatives, on every level… talk about in the dark. Whoa

  2. Barbara Roberts-Hirsch permalink

    Thank you, David, for this timely information. As has been the case with the ARCs of CT. for years, and now, the NCD… no one seems to be interested in speaking with the families, or guardians, of residents of STS, or group homes, to see what we feel is best for our loved ones. We continue to believe that STS is not so much a facility, but a well-run home for our loved ones, who enjoy living where they are, with others who they enjoy spending time with. More importantly, STS, has some of the finest, and best-prepared, loving staff, who go above and beyond, to care for these compromised residents. Perhaps the NCD would be willing to meet with some family members, and guardians, and to let us show them how well-cared for our loved ones are, at STS, and to perhaps, consider our wishes before mandating changes.

  3. D.M. permalink

    David, Thank-you for your concise summary of the huge NCD Report for readers of your blog. I am just amazed and appalled at some of the ideas expressed and I wonder, “who are the people of NCD?” A Deinstitutionalization “Toolkit”, a how-to manual to uproot people from their homes? Legal guardians of the small percentage of very fragile, medically involved and most vulnerable developmentally disabled individuals like my brother who resides at STS, deserve better. From reading the “brief” version, I’d like to share one example of the NCD’s Strategies that is just off base:

    “Self-advocates worked with the State of Maryland to describe the benefits of community
    living to parents who were opposed to the closure of the Rosewood Center. In Maryland,
    if opposition by the individual, family member, or guardian is identified, a peer mentor
    (self-advocate or individual with an ID/DD living in the community) may be introduced to
    and paired with a resident to expose the resident to community living experiences.”

    Really? NCD needs to pair up with a resident at STS and understand what is most meaningful. It’s the support service oriented, caring and safe environment on a beautiful campus in the community of Southbury. There is room for both views on the residential placement spectrum.

    Thanks again for keeping us informed.

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