Update to our update on the National Council on Disability’s anti-institutional bias — and — Senator Warren’s response

I wanted to thank Roger Lau, state director in Massachusetts for Senator Warren, who just called me and graciously apologized for the fact that no one had contacted us earlier in response to our letter and calls to the senator’s Washington office about the matter below.

Like a lot of other people and organizations, we hope to begin a productive working relationship with Senator Warren and her staff.  This is a great start.

(Cross-posted from The COFAR Blog)

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.