Protection & Advocacy History

Protection & Advocacy History 2018-07-12T17:01:45+00:00

Until the 1970′s there was no unified legal movement to guarantee people with disabilities the legal and human rights all other Americans enjoy. Parents of children with disabilities had to fight for acceptance in their home communities and change prejudicial attitudes exhibited towards their children. Accessing service delivery systems was difficult in most areas since little appropriate programming existed. Adults with disabilities were often placed in large institutions isolated from their home communities. There was inadequate protection from abuse and neglect.

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The Protection and Advocacy concept was initially triggered by a series of local television news broadcasts that Geraldo Rivera did for the ABC News affiliate in New York City in 1972. Rivera’s investigative reporting exposed abuse, neglect and lack of services and supports at Willowbrook, a state institution for people with intellectual and other disabilities on Staten Island.

These broadcasts galvanized the state’s senior senator, Jacob Javits, to action, incorporating the first P&A program – PADD (Protection and Advocacy for People with Developmental Disabilities) – in 1975 in the renewal of the Developmental Disabilities Assistance and Bill of Rights (DD) Act.

The DD Act provided for the governor of each state to designate an agency to be the P&A and to assure that the P&A was, and would remain, independent of any service provider. Most entities designated as P&As are private non-profit organizations created specifically for the purpose of conducting the P&A programs. However, some P&As are part of state government, a few are part of another public agency such as a state university, and a few P&As reside within civil legal services programs. Subsequent P&A statutes, with a single exception (CAP), provide for all new P&A programs to be housed within the same agency designated by the governors under PADD.

The initial focus of PADD and subsequent P&A statutes was to safeguard the well-being of individuals living in institutions and this remains a major focus of P&A activity today.

Our Work Today

All P&As continue to monitor, investigate and attempt to remedy adverse conditions in large and small, public and private, facilities that care for people with disabilities. P&As also assist persons with disabilities find living arrangements that are the least restrictive possible; indeed, the P&As have been at the forefront of the de-institutionalization movement.

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Over the years, the focus of P&A work was broadened to one that secures the rights of persons with all types of disabilities wherever they reside. P&A statutes were expanded to give the P&As additional authority so that the P&As now devote considerable resources to ensuring full access to inclusive educational programs, financial entitlements, healthcare, accessible housing, transportation, and productive employment opportunities, as well as continuing to seek prevention of abuse and neglect.

Special Investigatory Authority of P&As

The PADD and PAIMI statutes provide the P&As extraordinary investigative access authority. P&As have:

  • Routine access to all individuals with developmental disabilities in facilities providing services.
  • Access (within 3 days of request) to all records of individuals with developmental disabilities and other records that are relevant to conducting an investigation
    • When the individual is a client of the P&A and the individual (or a guardian) authorizes such access
    • When the P&A receives a complaint regarding the treatment of an individual or if, as a result of its monitoring activities, there is “probable cause to believe that such individual has been subject to abuse or neglect” and the individual, because of mental or physical condition cannot authorize access and there is no guardian, or the guardian is the state, or a non-state guardian does not respond to the P&A’s offer to assist.
  • Immediate access (within 24 hours of request), without consent from another party, to all records in the event of a death, or if the P&A determines there is “probable cause to believe that the health or safety of an individual is in serious and immediate jeopardy.”

A number of state laws give their P&As additional authority; for example, requiring facilities to report deaths and/or other types of incidents directly to the P&As.

P&As often face resistance to their efforts to investigate abuse and neglect, and numerous cases have been brought by P&As to enforce their access rights. P&As can take a variety of actions in response to findings of abuse and neglect and usually try a combination of steps. They may litigate to enforce constitutional and statutory rights of facility residents individually or as a class action; they may issue public reports describing their findings and recommending corrective action; they may develop cooperative protocols with facilities for monitoring and making improvements; and they may provide technical assistance to facilities and self advocacy training for individuals with disabilities.

Timeline

2002 Congress passed the Help America Vote Act (HAVA) to ensure that people with disabilities are fully included in the voting process.
2000 Congress established the Protection and Advocacy for Traumatic Brain Injury (PATBI) to protect the rights of people with traumatic brain injury.
1999 Congress created the Protection and Advocacy for Beneficiaries of Social Security (PABSS) program as part of the Ticket to Work and Work Incentive Improvement Act. This program assists people with disabilities to begin or return to work.
1994 Congress funded the Protection and Advocacy for Assistive Technology (PAAT) program to advance the right of people with disabilities to acquire technology that will support them in daily activities.
1993 Congress provided full funding for the Protection and Advocacy of Individual Rights (PAIR) program. PAIR provides protection and advocacy for individuals with disabilities who are not captured under CAP, the DD Act or PAIMI.
1986 Congress passed the Protection and Advocacy for Individuals with Mental Illness Act (PAIMI) to protect the rights of people with mental illness by providing mechanisms for the investigation of abuse and neglect.
1984 Congress created the Client Assistance Program (CAP), which helps individuals who have difficulty applying for or receiving rehabilitative services from the state.
1975 Congress passed the Developmental Disabilities and Bill of Rights (DD Act), which created the protection and advocacy system. Protection and advocacy organizations are required by the Act to pursue legal, administrative and other appropriate remedies to protect and advocate for the rights of individuals with developmental disabilities.

Federal Administration

Each of the P&A programs is separately administered by the federal agencies listed below. The P&As prepare annual performance reports for each of the eight programs and the federal agencies monitor the P&As through these reports and through on-site monitoring visits.

  • PADD, PAAT, PATBI and PAVA are administered by the Administration on Intellectual and Developmental Disabilities (AIDD) located within the Administration on Community Living (ACL) at the U.S. Department of Health and Human Services (HHS).
  • CAP and PAIR are administered by the Rehabilitation Services Administration (RSA), at the U.S. Department of Education (Ed).
  • PAIMI is administered by the Substance Abuse and Mental Health Services Administration (SAMHSA), Center for Mental Health Services (CMHS), at HHS.
  • PABSS is administered by the Social Security Administration.