Speaking out for People with
 Intellectual and Developmental Disabilities

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)


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.

California: Parent testimonial (2007)

Jan 01 07
To:  Ms Clea Benson-Bee Capitol Bureau
From: Dale Emde, Pacifica, California

As a parent of my severely handicapped son Arthur, who has lived successfully at Sonoma Developmental Center since 1964, I believe I am qualified to comment on the completely avoidable death of Donald Santiago after being forced to move from Agnews DC into the community against strong protests from family and friends.

Florida: Parent NON-involvement in Brown v. Bush

Parent NON-involvement in Brown v. Bush, a P&A lawsuit
By Don Stover
Stover Objectors – proposed Intervenors – Brown v. Bush

The Advocacy Center (Florida’s Protection and Advocacy (P&A) agency) and the Agency for Persons with Disabilities were two parties in Brown v. Bush, a federal lawsuit filed on March 24, 1998) (formerly Brown v. Chiles). This lawsuit resulted in the closure of the Community of Landmark. On June 16, 2004, a settlement agreement required that the state develop a plan by June 30, 2005 for the closure of Gulfcoast Center no later than July 1, 2010.

The families and guardians of Gulf Coast residents, or other Florida Developmental Service Institutions (DSI’s) were not invited to participate in negotiations. Families learned about the settlement in the Ft. Myers News-Press in July 2004. In October 2004, notices of a “fairness hearing” to consider the settlement were mailed to residents, parents and guardians. A group of Gulfcoast families and guardians – the Stover Objectors – quickly arranged for legal representation and organized opposition to the settlement agreement. By November 23, more than 200 letters were sent to the federal court in Miami. Counsel for the Stover Objectors also appeared in federal court at the Fairness hearing on December 10, 2004.

Kentucky: Parent Leader Testimonial (2007)

Kentucky Protection and Advocacy Testimonial
By Louise Underwood, President, Hazelwood Friends and Family
VOR Board M ember (retired) 2007

In February 2002, the Kentucky Protection and Advocacy System filed Michelle P. v. Holsinger in federal court. The Complaint alleged that Kentucky improperly wait listed individuals for Medicaid services.

In January 2006, the parties reached a settlement agreement that called for the state to put about $45 million into Medicaid services through 2008, but also requires that the state close admissions to Kentucky’s state operated ICFs/MR as individuals are transferred from the facilities to community settings.

Maryland: Parent testimony (2006)

Testimony for Public Forum
Before: Administration on Developmental Disabilities
By: Mary Lou Chandler, Parent, Salisbury, MD
Re: Maryland Disability Law Center (Maryland's Protection and Advocacy System)
Date: July 10, 2006

To Whom It May Concern,

I am a parent and legal guardian of a thirty-eight year old resident of Holly Center, ICF/MR in Salisbury, MD.

I strongly disagree with the agenda of the MDLC and the MD DD Coalition – close State Residential Centers.  I find it outrageous that these agencies receive Federal dollars to promote an agenda that is not supported by MANY taxpaying citizens.  These agencies do not represent my daughter and her rights to continue to receive care in the most appropriate setting – Holly Center.