Speaking out for People with
 Intellectual and Developmental Disabilities

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.

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.”

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.

Illinois: Illinois League of Advocates for the Developmentally Disabled (2006)


Review of Equip for Equality , Illinois’ Protection and Advocacy Agency
by Rita Burke, President
Illinois League of Advocates for the Developmentally Disabled (IL-ADD)

IL-ADD’s membership is composed of the presidents or other representatives from the parent/guardian organizations from all nine of Illinois’ State Operated Developmental Centers (SODCs)

Equip for Equality is a state appointed agency receiving Federal funding which is intended to advance the causes of all Illinois citizens with disabilities. This agency should be even-handedly supporting and advocating for all disability needs and embracing a full continuum of appropriate services. It does not.

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.