NCD Report on Deinstitutionalization: Part 1

From the NCD Web site: The National Council on Disability (NCD) is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Presidential appointees, an Executive Director appointed by the Chairman, and twelve, full-time professional staff.

The National Council on Disability issued a report in October 2012 called "Deinstitutionalization: Unfinished Business". The report is a companion paper to an NCD Deinstitutionalization Toolkit designed to provide a how-to manual for all those interested in institutional closures.

What's wrong with this picture? The National Council on Disability is a federally funded agency that is using federal money to mount a campaign to eliminate another federal program that NCD members don't like. 

Intermediate Care Facilities for people with developmental disabilities (ICF/DD) are funded and regulated by Medicaid. They are considered to be institutions under Medicaid law, along with nursing homes, mental hospitals, and other hospital settings. Some ICFs are larger facilities, but they may be as small as 4-bed state-operated group  homes. They house some of the most severely disabled adults, including people who are medically fragile or have behaviors that make them very difficult to care for in community settings.  ICFs/DD come with an array of services that are often not routinely available elsewhere (for instance, nursing services, dental care, and other specialities). Funding covers total care and is not fragmented the way it is in most community settings.

Residents of institutions have protections against abuse, neglect, and exploitation as well as the right to continue to receive institutional care, even if it conflicts with the ideology of advocacy organizations that don't want them to have this choice.

Although the NCD report emphasizes closing larger facilities, it arbitrarily (and without any specific authority to do so) redefines the word "institution" to include any setting that is "a facility of four or more people who did not choose to live together"(emphasis added). It appears the NCD is laying the groundwork for the elimination of a broad spectrum of living situations currently available to the DD population.

By calling for the closure of all larger facilities, the NCD misinforms the public on the intent of the Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision with regard to institutional care for people with severe disabilities. It places at risk people who are the most vulnerable and difficult to care for. 

More Information:

Link to the NCD report.

My comments on the NCD report.

Comments from VOR, a national organization that supports a full array of residential and service options for people with ID/DD.

Comments from a Massachusetts blog, "The National Council on Disability can’t be serious"

Send comments to the National Council on Disabilities at PublicComment@ncd.gov

Because the NCD is a federal agency with oversight by the U.S. Congress, send copies of you comments to President Obama, your U.S. Senators (Carl Levin and Debbie Stabenow in Michigan) and your U.S. Representative (find here)