Utah mother, her son's severe burns at a group home, and the Utah P&A's lack of response

October 18, 2007

Lieutenant Governor Gary R. Herbert
State Capitol Complex, Suite E220
Salt Lake City, Utah 84114-2220

Dear Lieutenant Governor Herbert:

I am writing to you to add my voice of complaint against the policies and practices of the Disability Law Center, Utah’s Protection and Advocacy Agency.  Their website states one of their priority issues for 2006-2009 is Abuse and Neglect. Under this heading, they further state as part of their Team Mission is to: “Investigate abuse and neglect of people with disabilities in residential facilities.”

Section 143 of the DD Act - System Required

DD Act: Protection and Advocacy
Sec. 143
System Required

(A) have the authority to-

(i) pursue legal, administrative, and other appropriate remedies or approaches to ensure the protection of, and advocacy for, the rights of such individuals within the State who are or who may be eligible for treatment, services, or habilitation, or who are being considered for a change in living arrangements, with particular attention to members of ethnic and racial minority groups; and

(ii) provide information on and referral to programs and services addressing the needs of individuals with developmental disabilities;

Deinstitutionalization is Not Mandated by the DD Act

Deinstitutionalization Is Not Mandated
by the Developmental Disabilities Assistance and Bill of Rights Act

 QUESTIONS PRESENTED

1.  Does the DD Act mandate transfers of individuals from large residential facilities?
2. Are P&A systems permitted to advocate for admitting individuals to facilities upon determination of need and eligibility, and at the request of the individual and/or his family/guardian?

SUMMARY RESPONSE

1.  The DD Act does not mandate transfers from facilities without regard to the needs and choices of the individual.
2. P&A systems are authorized to advocate for admitting individuals to facilities upon determination of need, eligibility and choice.

1993 House Energy and Commerce Committee Report

House Energy and Commerce Report No. 103-378
To accompany H.R. 3505, Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1993
Section-by-Section Analysis
(Excerpt: Section 3, adding Purposes and Policies to Findings section of statute)
November 18, 1993

“The Committee recognizes that, with the appropriate resources and support, many individuals with developmental disabilities will live lives that are fully integrated into their respective communities. This potential, however, should not be seen as limiting the choice of individuals and their parents to seek living arrangements that are most suitable to their needs and wishes, whether they be in the community or in institutions."

Class Action Litigation: ICF/MR(MR/DD) Deinstitutionalization Cases Filed By Protection and Advocacy

Class Action Litigation:
ICF/MR (MR/DD) Deinstitutionalization Cases Filed By
Protection and Advocacy

ICFs/MR = Intermediate Care Facilities for Persons with Mental Retardation

MR/DD = Mental Retardation/Developmental Disabilities

**facilities closed due to litigation

1.   ARKANSAS: Porter, et al v. Knickreim, et al., U.S. Dist. Court Eastern District of Arkansas 4:03 CV00812SWW  (2003) (appeal heard June 16, 2006). Complaint alleges that the state's admission and discharge procedures for its state operated ICFs/MR are unconstitutional.

2.   CALIFORNIA:  Capitol People First, et al. v. California Department of Developmental Services, et al. (2002). Complaint alleges that California has caused thousands of individuals to be “needlessly isolated and segregated” in large congregate public and private facilities, in violation of federal and state law, and the Constitution. Proposed class would include about 6,000 people in large ICFs/MR, and 400 people each year at risk of institutionalization. Class action was denied. In November, 2002, the California Association of State Hospital Parent Councils for the Retarded and the California Association for the Retarded successfully sought intervention because they not believe that the defendants will adequately represent individuals in facility settings.

ICF/MR Program - Background and History

Intermediate Care Facilities For the Developmentally Disabled:
Meeting the Long Term Care Needs and Maximizing the Potential
of Individuals with Mental Retardation and/or
Developmental Disabilities

by American Health Care Assocation

-Introduction-

Prior to 1971, facilities for the mentally retarded and developmentally disabled were financed solely by state, local and private funding. Many facilities were plagued by overcrowding and poor conditions. Dramatic changes were the order of the day, compelling Congress and the Nixon administration to act.