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Update on the National Council on Disability’s anti-institutional bias

January 22, 2013 2 comments

We wrote here before about the extreme ideological position of the National Council on Disability, which called last month for the closure of all residential facilities for persons with intellectual disabilities with more than three people living in them.

The NCD appears to be at it again, this time in the wake of the tragic shooting deaths of children and teachers in Newtown last month by a young man who may have had a mental illness or at least needed mental health treatment.

In a January 11 letter to Vice President Joe  Biden, in Biden’s capacity as head of the president’s gun violence task force, Jonathan Young, chair of the NCD, appears to be more concerned about creating “an unnecessary expansion in institutionalization” than in ensuring that people who pose a danger to others get treatment or medication. 

Young uses most of the letter to urge the vice president to avoid any measures that could unnecessarily institutionalize people, involuntarily commit them, or force treatment on them. 

No one would disagree with Young’s contention in his letter that people who pose no risk of violence should not be subject to institutionalization or forced treatment.  But Young says little about what the task force could or should do to protect everyone’s safety.

While COFAR’s mission is to advocate on behalf of people with intellectual disabilities, not specifically on behalf of people with mental illness, we are commenting on Young’s letter because much of the debate over deinstitutionalization of both groups of people has been similar.  Certainly, Young and the NCD take the same view in favor of complete deinstitutionalization of both groups, and make the same flawed arguments about each.

In his letter to Biden, Young states that “institutional care has a long-standing history of poor outcomes and civil rights violation (sic) among persons with psychiatric disabilities.”  At the same time, he bemoans a “profound shortage in community-based services” for people with mental illness.  

There are a number of potential contradictions here.  First, Young and many  other institutional opponents gloss over the fact that many so-called community-based services are institutional in nature.  The NCD, in fact, takes this viewpoint to an extreme.  With regard to people with intellectual disabilities, the NCD has stated that even community-based group homes are institutional and should be closed down if they have more than three people living in them.

Young and the NCD can’t have it both ways.  Young talks about a shortage of community-based services and yet he and the NCD want to dismantle much of the community-based infrastructure that exists for people with intellectual disabilities.

Secondly, while institutional care, whether of persons with psychiatric disabilities or intellectual disabilities, has certainly had its problems in the distant past, that care has come a long way.  It’s deinstitutionalization, which has had the more checkered recent history and the poorer outcomes.

Here is an assessment in 2007 of the success or lack thereof of deinstitutionalization of the mentally ill, by the Kaiser Commission on Medicaid and the Uninsured.

The history of deinstitutionalization began with high hopes and by 2000, our understanding of how to do it had solidified. But it was too late for many. Looking back it is possible to see the mistakes, and a primary problem was that mental health policymakers overlooked the difficulty of finding resources to meet the needs of a marginalized group of people living in scattered sites in the community (my emphasis). 

This marginalization of people living in scattered sites in the community is something we at COFAR have been saying for a long time with regard to people with intellectual disabilities.  It’s distressing that the NCD, an independent federal agency that advises the president and Congress on disabilities issues, has apparently chosen to rewrite the real history of deinstitutionalization.

Young’s other major concern in his letter to Biden appears to be that safety-related measures under consideration by Biden’s task force, such as requiring colleges to refer students with perceived psychological disabilities for evaluation and institutionalization, might perpetuate a stigma or damaging stereotypes about mental illness.  This concern on Young’s part appears to override his concern about the need such people might have for treatment.

We need to have a constructive discussion concerning the future of care for people with both mental illness and developmental disabilities.  One way to begin is to stop the stereotypes and stigmas about institutional care.

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The National Council on Disability can’t be serious

December 14, 2012 2 comments

A key sign that ideology has taken over rational thinking in an organization is that the organization ups the ante on a given issue by taking progressively more radical positions on it.

At a certain point, the organization’s position reaches the level of the absurd, and that is what seems to have happened in the case of the National Council on Disability’s  latest position in favor of deinstitutionalization of the intellectually disabled.

In a new online report and “Toolkit” titled “Deinstitutionalization: Unfinished Business,” the NCD, a federal agency that advises the president and congress on issues concerning the disabled, calls for the closure of all institutions for the intellectually disabled.   Here’s the first sentence of the report:

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.

More about that in a moment.  First, it’s important to note that the report introduces a new definition of an “institution”:

NCD believes that institutions can be not just large state-run institutions, but community-run small group homes as well;  therefore NCD has defined “institution” as a facility of four or more people who did not choose to live together. (my emphasis)

This can’t be serious!  A group home with four people in it is now an institution?  The Social Security Act has up to now defined institutions as facilities housing 16 or more people.

What do the group home providers around the country, who have long opposed institutional care, think about the NCD’s new definition?  Suddenly it’s the providers themselves who are apparently running little institutions, thinking all along that they were running “integrated” community-based homes.

It gets worse.  The NCD report seems to  focus most of its anti-institutional fire on Intermediate Care Facilities for the developmentally disabled (ICFs), which tend to serve the most profoundly disabled people and which must meet more stringent federal standards for care and treatment than do most group homes.  While developmental centers such as the Fernald and Glavin centers in Massachusetts are ICFs, small, privately operated ICFs also exist in many states.

Apparently, the NCD doesn’t like the fact that the ICFs must meet standards of any sort.  The NCD report characterizes ICFs as providing “a regulated program of services in a formally certified setting,” which means, according to the report, that residents in those facilities are “still living an institutional life.”  Is NCD advocating unlicensed or uncertified facilities here?

Should all ICFs, and group homes with more than three residents in them, for that matter, be shut down, whether the residents are happy in them or not, because the residents are somehow living an institutional life?  Apparently so.

How would that work?  Would providers, for instance, be required to build a new generation of smaller residences that only house three people?  Should families shoulder more of the burden of caring for extremely disabled children or siblings in order to avoid “institutionalizing” them in a residence with more than three people?  The NCD report doesn’t discuss any of that, as far as I could see.  And why should it?  When you’re promoting an ideological viewpoint, why get into practical details?

It would seem the NCD’s goal is ultimately to put everyone out on the street, where they can fend for themselves;  and once there, apparently no matter how disabled they are, they will somehow find “dignity, freedom, choice, and a sense of belonging that is not possible in an institutional environment.”  Does anyone really believe that?

The NCD report adds that “deinstitutionalization is a civil rights issue,” and that a key strategy in closing institutions is to “focus on closure as a civil right.”   But what about the civil rights of the vast majority of families of residents of developmental centers and other “institutions,” who don’t want those facilities to close?

The VOR, a national organization that advocates for a continuum of community and institutional care for those who need it, last week characterized the NCD report and Toolkit recommendations as “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.”

The VOR further questioned whether the NCD has the legal authority to define institutions for the disabled differently than does the Social Security Act.

Meanwhile, here are some of the other strategies in the NCD’s Toolkit for closing those facilities: 

  • “Define the choice (over closure) as not ‘if,’ but ‘when’ and ‘how,'” and
  • “Close the Front Door,” meaning push for the prevention of new admissions to developmental centers and presumably all other facilities with more than three people in them.  The Toolkit states that a strategy of blocking new admissions tends to reduce opposition among families when the decision is made to close those facilities.

My favorite strategy in the Toolkit,  however, is to “Build your case with faces, not facts.”   The Toolkit states:

‘Faces not facts’ are important drivers of the discussion and the community’s support. The issue should have a “face”—personal stories, individual self-advocates, and parents who support the closure are all important influencers. 

That sort of says it all that one of the main strategies advocated by the NCD is to downplay the importance of facts in the debate over closing ICFs.

To be fair, the NCD report does appear to recognize some of the serious problems that exist in the community system, including wages to direct-care workers that average only $10.14 an hour, compared with $15.53 for direct-care workers employed in residential institutions.  The report also acknowledges that there are long waiting lists for care in the community system.

The NCD report even appears to recognize that community-based care can be as or more expensive than institutional care if the same costs and populations are compared.  The report notes:

The average cost of care in the community is not necessarily comparable to the average cost for people in institutions owing to differences in severity of disability and the required services and supports.

And the report recognizes that concerns among families of institutional residents “might include access to regular health care and dental care, safety, and continuity and quality of care” in the community system.

That’s the real unfinished business in providing care to the intellectually and developmentally disabled among us, not closing vital institutions.  As the VOR noted in their statement in response to the NCD report and Toolkit:

Closures (of institutions) opposed by the very people impacted have done nothing to address community capacity. Waiting lists continue to grow and community tragedies to occur.