Executive Summary: Abuse of DD Act Programs' Powers & Resources

Full Report

FEDERAL OVERSIGHT OF ENTITIES FUNDED UNDER THE DEVELOPMENTAL DISABILITIES ASSISTANCE & BILL OF RIGHTS (“DD ACT”)

“ABUSE OF DD ACT PROGRAMS’ POWERS & RESOURCES”

EXECUTIVE SUMMARY

VOR’s DD Act Reauthorization Position.
VOR urges Congress to amend the DD Act to incorporate the changes recommended by VOR to assure that the DD Act programs are meeting the needs of people with severe and profound mental retardation and developmental disabilities (MR/DD).

VOR is a national grassroots advocacy organization speaking out for persons with MR/DD.
This Executive Summary and the related report (see, http://vor.net/DDActReport.htm) were prepared by the VOR DD Act Task Force, an ad hoc committee authorized by the VOR Board of Directors in June 2007. VOR receives no public funding.

There are 3 primary DD Act Programs.
The three primary programs authorized by the DD Act are the state Developmental Disabilities Councils (DD Councils), state Protection and Advocacy (P&A) systems, and state University Centers for Excellence in Developmental Disabilities (UCEDD) (see, 42 U.S.C. 15001 et seq. (2000)).

The DD Act will be reauthorized in 2009, the first time in more than 8 years.
Although the DD Act authorization expired in 2007 after a 7-year authorization in 2000, it is not anticipated that it will be reauthorized until 2009.

The DD Act requires the provision of services to be based on choice and need.

Choice: The DD Act recognizes individuals and their families as the “primary decisionmakers” regarding services supports and policies (DD Act, 42 U.S.C. 15001(c)(3)(2000)).

Need: The DD Act recognizes the right of individuals with developmental disabilities to receive publicly-supported treatment, services and habilitation that are appropriate to needs of the individuals (42 U.S.C. §15009(a)(3)(A)(2000)).

Congress intends for the DD Act to support service choice.
In 1993, the Energy and Commerce Committee was crystal clear in its expectations for DD Act programs:  “[T]he Committee would caution that goals expressed in this Act to promote the greatest possible integration and independence for some individuals with developmental disabilities not be read as a Federal policy supporting the closure of residential institutions. It would be contrary to Federal intent to use the language or resources of this Act to support such actions, whether in the judicial or legislative system.” (House Commerce Committee, Report No. 103-378, Nov. 18, 1993, pages 7-8).

Some DD Act programs have abused their powers and federal resources by pursuing activities that are counter to the DD Act’s statutory policy and congressional intent.
Without consequence, some DD Act-funded activities have resulted in the loss of facility-based care for persons with MR/DD, to the documented detriment of many former residents with MR/DD.  In its report, the DD Act Task Force documents 93 examples from 14 states of DD Act programs’ obvious anti-facility bias, despite the clarity of the  DD Act and congressional support for residential choice (see, http://vor.net/DDActReport.htm).

Here’s just a sampling:

State DD Councils
In September 2007, the Missouri DD Council published a full page, full color ad in the St. Louis Post Dispatch implying that specialized facility-based services for people with MR/DD are like prisons by indicating that residents “who have committed no crime [are] locked away from society.”

The Wisconsin DD Council adopted a public position in 2007 supporting the downsizing and eventual closure of Southern Wisconsin Center, a state operated facility, and granted “People First Wisconsin” at least $61,000 over 4 years, despite this organization’s express priority to “not rest until all state centers in WI are closed.” DD Act programs in Maryland, Washington, and other states also funded self-advocacy groups and activities, which supported ICF/MR closures.

“It is the position of the [Washington State] Developmental Disabilities Council that: 1) the Legislature should pursue a policy on downsizing IMR/RHCs [MR/DD facilities] with the goal of eventually closing institutions contingent upon development of adequate and appropriate programs and facilities.” (Residential Habilitation Centers (RHCs), Policy No. 103).

 State Protection & Advocacy agencies
In California, nearly 2,500 people were transferred from public ICFs/MR following a P&A class action lawsuit. The result, as documented by peer-reviewed studies and media exposes, was an alarming increase in mortality among those individuals transferred. Not only did P&A fail to “protect and advocate” for those who were suffering in community programs, but in 2005 it filed another lawsuit to close more ICFs/MR.

The Ohio P&A proposed, as part of a legal settlement with the state, to eliminate entirely facility-based care in the state.

The Florida P&A told one mother of a facility resident in a letter that large facilities are a “despicable way for government and society to treat people who happen to have a developmental disability.”

In response to consumer complaints regarding requests to access individual records, a Hawaii state bill was introduced in 2008 that, if passed, will require the state auditor to perform a financial and management audit of the Hawaii Disability Rights Center, the state’s P&A.

One Member of Congress has sought to address the concerns of facility residents and their legal guardians by filing a bill that, if passed, will require P&As to notify individuals and their legal guardians before a class action suit is filed and provide them with the right to opt out of the suit (see, H.R. 3995).

 State University Programs (UCEDDs)
The Texas UCEDD joined with other organizations to lobby the Texas Legislature to adopt budget policies which would cause “the immediate re-direction / re-allocation of resources from State Institutions (including. . . [public and private] ICFs/MR . . .) to community living programs (http://www.dpctexas.org, November 2007).

For more detailed information about DD Act program abuses see, http://vor.net/DDActReport.htm.

Many fragile Americans with severe and profound MR/DD have been harmed due to DD Act program activities.

“Community for all” is a position forcefully pursued by many disability advocates, including many DD Act programs. Far from utopia, systemic problems with community services are well-documented in more than half the states (see generally,

http://www.vor.net/abuse-and-neglect).

In some situations, DD Act programs have denied or ignored these problems and continued to pursue the transition of medically fragile, multiply disabled, profoundly MR/DD individuals to ill-prepared, under-funded community living situations. For example, in California, much higher mortality has been reported in peer-reviewed studies among the more than 2,500 who left facility care following a P&A lawsuit. In New Mexico, the Governor authorized a private investigator to find former Los Lunas facility residents – a facility closed due to a P&A lawsuit – who had “slipped through the cracks.” In Maryland, where the DD Council and P&A express strong anti-facility biases in testimony, priorities, and policy, there have been extensive media reports regarding the state’s group home failings. In Pennsylvania, families of former Western Center residents, closed due to a P&A lawsuit, have filed a lawsuit alleging injuries among the residents transferred. In Illinois, Maryland, Ohio, Utah, California and other states, families and other advocates have delivered public testimony/comments regarding DD Act program activities, including these programs’ anti-facility choice bias and disregard for individual and family/guardian input.

VOR’s Recommended Reforms

A. Schedule public hearings on the DD Act as soon as possible, providing opportunity for affected individuals and their families to testify.

B. Amend the DD Act to enforce DD Act program adherence to residential choice, as is clearly supported by Congressional intent and the U.S. Supreme Court’s Olmstead decision:
 
“No funds expended for any Developmental Disabilities Assistance and Bill of Rights Act program may be used to effect  closure of any Medicaid-certified Intermediate Care Facility for Persons with Mental Retardation  or to support entities engaged in activities to close any such facility.”
 
C. Enact the provisions of H.R. 2032 to require DD Act programs to notify the residents of an ICF/MR or, where appointed, their legal representatives (defined to include legal guardians and conservators) before filing a class action and provide them with a time-limited opportunity to opt out of the class action.

D. Limit the reauthorization cycle to three years.

For More Information
See the VOR web site at: http://www.vor.net/images/VORDDActPresentation.pdf

Contact:
Tamie Hopp
Director, Government Relations & Advocacy
605-399-1624 direct
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