Speaking out for People with
 Intellectual and Developmental Disabilities

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."

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.

Pennsylvania: Pennsylvania League of Concerned Families of Retarded Citizens (2006)

Testimonial from Pennsylvania
by Bert springstead, President
Pennsylvania League of Concerned families of retarded citizens
VOR Board Member

May 15, 2006
Pennsylvania Protection and Advocacy (PP&A) is required to protect and advocate the rights of people with mental retardation.  However, as the father of a son with mental retardation and statewide advocate for VOR’s position regarding choice, I am well aware of the hundreds of families of people with mental retardation within Pennsylvania who are extremely concerned about PP&A’s calculated selection of rights it will and will not protect.  More specifically, families are troubled by PP&A’s callus disregard for people with mental retardation and their families when, as primary decision makers, they seek to exercise their right to choose services provided by an ICF/MR instead of a community-based setting.  The string of consistent examples over the course of more than fifteen years that contributed to that conviction include:

California: CASHPCR (statewide family association) testimony (2006)

2006

Testimony of Theresa DeBell, President, CASHPCR
Re: California Protection and Advocacy Incorporated (PAI) and State Council

Good Evening.  My name is Theresa DeBell, and I am the president of CASHPCR, which represents the families and friends of the 3, 000 residents of the California Developmental Centers.  Thank you for the opportunity to comment on Protection and Advocacy and the State Council.

Last week a PAI representative testified against replacing a kitchen at a developmental center that was inadequate to deliver meals to the residents, with numerous health code violations, including the presence of vermin.  She testified that the money would be better spent providing a less restrictive environment for the residents.  This would be rather difficult to manage for those residents with forensic placements, and does not address the fact that the residents are entitled to receive proper and safe nutrition services.