Speaking out for People with
 Intellectual and Developmental Disabilities

Summary of Family Testimonials

Federally-funded attorneys’ (Protection and Advocacy/P&As’)
failure to include families and respect residential choice

The following are summaries of family testimonials from 11 states. For the complete presentation, click here.

California In 1990, P&A filed a class action lawsuit due to the complaints of thirteen families. A survey of over 5,000 developmental center families found that 98% did not wish to participate in the lawsuit. Despite these findings, P&A negotiated a Settlement Agreement to transfer more than 2,000 residents from several California developmental centers into the community. This initial exclusion of families opposed to P&A activities continued throughout the entire process, and continues in large part today. As a result, peer-reviewed research published between 1996 and 1999 found risk of mortality from 72% (1996) - 88% (1999) higher in community-based settings as compared to developmental centers, and there have been numerous media reports since the implementation of the Coffelt settlement agreement have detailed systemic problems of abuse and neglect in community-based settings ill-prepared to accommodate the thousands of individuals being transferred from developmental centers. Despite this outcome, in 2002, California’s P&A filed yet another deinstitutionalization lawsuit that exhibits the same hallmarks as the first: the case filed despite known family/legal opposition and has fought family intervention throughout the case and blatant deinstitutionalization objectives. (Developmental Center father, 2000 and 2007).

California "I could not believe the statement by Ellen Goldblatt (Executive Director, CA PAI) about Donald Santiago, ‘It’s tragic that he then died. It’s also nice that he got to move after so many years of living in an institution.’ Can I really believe she said that? My son has lived in a wonderful environment at Sonoma Developmental Center for 42 years and would have been dead many years ago had PAI happened to target him.” (Sonoma Center father, Jan. 2007).

Florida “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 . . . by November 23, more than 200 letters were sent to the federal court in Miami,” but it was too late. (Gulf Coast Center father, 2007).

Texas The Texas P&A (Advocacy Inc) intervened in the Lelsz lawsuit. Families spent over $500,000 and intervened in the Lelsz lawsuit in attempt to preserve choice. Following the lawsuit, legislative action led to the closures of Travis and Fort Worth State Schools in 1995 and 1996. (Texas mom, 2006).

Ohio During the sixteen year life of the Martin lawsuit, OLRS [Ohio’s P&A] staff sat on numerous policy making and policy influencing committees in state government, always articulating the same philosophy: that mrdd citizens did not want ICF’sMR or state operated developmental centers, and that thousands of Ohio citizens were clamoring to get out of these facilities in exchange for community based residential services . . . Even when the Cincinnati Enquirer, the Akron Beacon Journal and the Columbus Dispatch published stories indicating widespread abuse in the community system in Ohio-OLRS remained silent and continued to perpetuate the myth that large facilities were bad, and small “community” settings were good. OLRS engaged in the development of an illusion that thousands of Ohio consumers were not only clamoring to get out of these facilities, but that the “community” settings that OLRS was advocating for, were free of problems. That illusion was shattered when the 31,000 consumers offered up their support for and demand for developmental centers and ICFMR services in Ohio.” (Ohio League for the Mentally Retarded, 2006).

Utah “In October, 2006 my son who has autism was severely burned in an accident at his group home . . . He was left unattended in the kitchen and his rugby shirt caught fire on the gas stove. He was burned on his back across his waist and then up to his shoulder blades . . . On May 16, 2007 . . . [I] met with a woman at the Disability Law Center [Utah’s P&A] . . . We were summarily dismissed and told to ‘contact an attorney who handles personal injury cases.’ We were told that the Disability Law Center only handles ‘systemic issues’ to which I replied that I would consider any case of abuse and neglect as systemic. My experience with this agency over the past twenty-five years plus is that they refuse to address issues of neglect that occur in the ‘community’. Their entire efforts have been to close residential services in institutions (Intermediate Care Facilities/Mental Retardation) and to promote and advocate for services only in the ‘community’ (group homes, etc.). I dare say if my son had been wounded at the Utah State Developmental Center of any of the Private ICF’s/MR the Disability Law Center would have filed a significant lawsuit and there would have been substantial negative publicity. I think we are ill-advised to spend taxpayer dollars to support any group with such deep bias as the Disability Law Center exhibits.” (Utah mother, October 2007).

Pennsylvania “Had this law been in place during the 1990-2000 assault on Western Center by Pennsylvania’s (alleged) Protection and Advocacy agency, 32 forcibly out-placed Western residents would not have died horrible, uninvestigated, covered-up deaths . . . Now our statewide waiting list for out-of-home placements of retarded, autistic and other developmentally disabled Pennsylvanians is over 22,500.” (Western Center father, Nov. 2007).

Illinois “Equip for Equality [EFE] [Illinois’ P&A] is unapologetically biased against state operated developmental centers (SODCs), which serve individuals with the most extreme needs, many of whom have severe medical conditions and/or extreme behavior disorders, who would be at highly increased risk of isolation, over-medication, imprisonment and even death if forced from their SODCs to ‘community’ settings. Parents and family members of these high risk individuals do NOT believe, nor should they, that EFE is their advocate. On the contrary, they feel threatened, as well they should, by EFE, and are alarmed that this agency’s anti-SODC agenda is empowered by Federal funding, our own tax dollars, put to work to the detriment of our children and family members. With the help of federal funding, this state’s most vulnerable people with developmental disabilities are at risk of becoming human casualties to the blind, narrow, rigid agenda of EFE that takes precedence over and disregards reality, Supreme Court protections under Olmstead, and simple, ordinary compassion.” (Choate Center mother, 2007).

Kentucky “Although families of state ICFs/MR residents are supportive of plans for additional funding for community programs for people waiting for community services, we were not aware until shortly before the court hearing to approve the settlement of the provision relating to the closure of ICFs/MR – our family members’ homes. At the time of settlement negotiations, neither the State nor Kentucky’s P&A sought the families’ perspective. Families learned of the settlement only 12 days in advance of the court hearing and were not invited to comment. The lack of any meaningful opportunity to contribute to a process that will have potentially significant impact on their vulnerable love one’s lives is unconscionable. Desperate to be heard, four family organizations representing more than 500 families filed the lawsuit seeking intervention in the Michelle P. lawsuit for the purpose of opposing the closure provision in the settlement agreement.” (Hazelwood ICF/MR mom, 2007).

In 2007, the Kentucky UCEDD (a DD Act university-based program) collaborated with the ARC of Kentucky in distributing two PowerPoint presentations to policymakers using inflammatory, misleading language regarding ICFs/MR for people with profound developmental disabilities. These presentations promoted one system of care (“community” only) and encouraged the state to use its powers as public legal guardian to displace 52 public ICFs/MR residents to “community care.” See here for the UCEDD's proposal  and related powerpoint presentation in support facility closure.

Maryland “I strongly disagree with the agenda of the MDLC [Maryland’s P&A] . . . – 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. (Holly Center mom, 2006).

Pennsylvania “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. [A] string of consistent examples over the course of more than fifteen years [contribute] to that conviction.” (Pennsylvania father, 2006).

Arkansas “In May, 2003, the Arkansas Protection and Advocacy (“P&A”) called Disability Rights Center (“DRC”) filed a class action lawsuit in the Eastern District of Arkansas US. The named-plaintiff, ‘Jane Doe’ was a resident of an ICF/MR whose legal guardian was not consulted by DRC. The suit challenged Arkansas’ admission and discharge policies to the state’s six ICFs/MR. I represented the statewide parent-guardian association, Families and Friends of Care Facility Resident (FF/CFR) in its successful move to intervene in the case . . . Families of ICF/MR residents cannot meet the challenges brought by P&A suits without incurring enormous financial burdens. The well-funded, unchecked ability of P&A groups to bring and settle ‘systems-change’ lawsuits (at taxpayer expense) places them in powerful positions which cannot be matched by families/guardians on the basis of costs and financial burden.” (Arkansas father, 2006).