The National Council on Disability can’t be serious

(Cross-posted from The COFAR Blog)

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.