The P&A / CAP System

Page last updated: 5/31/07

Protection and Advocacy agencies (P&As) exist in all states and territories and receive funds under a variety of federal programs. There is also a Native American P&A in the four corners region of the Southwest. The P&A network is the nation’s largest provider of legally based advocacy services for individuals with disabilities. Although many, if not most, of P&A clients are low-income, the P&A statutes allow them to serve all individuals with disabilities, without any income restriction.

The first P&A program – PADD (Protection and Advocacy for Individuals with Developmental Disabilities) was created in 1975 after a series of television reports exposed the deplorable conditions at Willowbrook, a large New York state institution for people with mental retardation. Similar concerns about the abuse and neglect of individuals in mental health facilities led to enactment of PAIMI (Protection and Advocacy for Individuals with Mental Illness).

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. 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. Over the years, the focus of P&A work was broadened to one that secures the rights of persons with all types 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.

The P&A Programs

There are eight separate P&A programs – all described briefly below, in order chronologically based on when they were created. The largest, dollar-wise, are PADD, PAIMI and PAIR and most P&A work is done under those programs. The other P&A programs are significantly smaller. Some of the programs began as demonstration projects in a few states, but all have expanded so that these programs now provide services in all states and territories. With the exception of the CAP program, which is separate in many states, all of the P&A programs are implemented by a single agency within each state and territory.

• PADD (Protection and Advocacy for Individuals with Developmental Disabilities) , 42 U.S.C. 15041, et seq. PADD is the first P&A program,created by the Developmental Disabilities Assistance and Bill of Rights (DD) Act of 1975. P&A agencies are required by the Act to pursue legal, administrative and other appropriate remedies to protect and advocates for the rights of individuals with developmental disabilities under all applicable federal and state laws. 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 hybrid quasi-public agencies, and a few P&As reside within civil legal services programs. Subsequent P&A statutes, with a single exception (CAP), provide for the new P&A programs to be housed within the same agency designated by the governors under PADD.

• CAP (Client Assistance Program), 29 U.S.C. 732. CAP was established by the 1984 Amendments to the Rehabilitation (Rehab) Act. Services provided by CAPs include assistance in pursuing administrative, legal and other appropriate remedies to persons receiving or seeking services from state rehabilitation agencies under the Rehab Act. A CAP agency may provide assistance and advocacy with respect to services that are directly related to employment for the client or client applicant. CAP is the only program that does not require the funds to go to the entity designated as the P&A under PADD.

• PAIMI (Protection and Advocacy for Individuals with Mental Illness), 42 U.S. C. 10801 et seq. The PAIMI Program was established in 1986. The P&As are mandated to protect and advocate for the rights of people with mental illness and investigate reports of abuse and neglect in facilities that care for or treat individuals with mental illness. The Act was subsequently amended to allow P&As also to serve individuals with mental illness who reside in the community.

• PAIR (Protection and Advocacy for Individual Rights), 29 U.S.C. 794e. The PAIR program was established by Congress under an amendment the Rehabilitation Act in 1993. PAIR programs provide for services to persons with disabilities who are not eligible for services under the three previously established P&A programs (PADD, PAIMI, and CAP). With PAIR, the P&As were thus authorized to serve able to serve persons with all types of disabilities. Although PAIR is funded at a lower level than PADD and PAIMI, it represents an important component of a comprehensive system to advocate for the rights of all persons with disabilities.

• PAAT (Protection & Advocacy for Assistive Technology), 29 U.S.C. 3004. The PAAT program was created in 1994 when Congress expanded the Technology-Related Assistance for Individuals with Disabilities Act (Tech Act) to include funding for P&As to assist individuals with disabilities in the acquisition, utilization, or maintenance of assistive technology devices or assistive technology services through case management, legal representation and self advocacy training.

• PABSS (Protection & Advocacy for Beneficiaries of Social Security) 42 U.S.C. 1320b-21. The PABSS program was established in 1999 when the Ticket to Work and Work Incentive Improvement Act (TWWIIA) was enacted into law.  Under this Act, grants to the P&A programs provide advocacy and other services to assist beneficiaries of Social Security secure or regain gainful employment.

• PATBI (Protection & Advocacy for Individuals with Traumatic Brain Injury), 42 U.S.C. 3000d-53. The PATBI program was created in 2002 to provide protection and advocacy services to individuals with traumatic brain injury. Although P&As often served such individuals under PAIR, CAP, or PABSS, this grant provides more resources specifically to address the unique needs of this population.

• PAVA ( Protection & Advocacy for Voting Accessibility), 42 U.S.C. 15461. The PAVA program was established in 2003 as part of the Help American Vote Act of 2002 (HAVA). Under this program, P&As have a mandate to help ensure that individuals with disabilities participate in the electoral process through voter education, training of poll officials, registration drives, polling place accessibility surveys and the like. P&A agencies may not use PAVA program funds for litigation. There is no such restriction in any of the other P&A programs.

Special Investigatory Authority of P&As

As noted above, the initial and still central mission of the P&A system, was and is to prevent the abuse and neglect of individuals with disabilities, particularly those who reside in institutions or other facilities. To this end, the PADD and PAIMI statutes provide the P&As extraordinary investigative access authority. For example, under PADD, the P&As have (42 U.S.C. 15043(2)):

• 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.”

Similar authority is afforded under PAIMI. 42 USC 10805 (a)(3) and (4), 42 USC 10806. 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 created under the P&A statutes. 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 a ction; 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.

Broader P&A Activities

The P&As also litigate and otherwise advocate on behalf of individuals with disabilities to insure their rights to employment, education, health care, transportation, housing, and other services. Besides litigation, the P&As also engage in a full range of other efforts to promote the rights of individuals with disabilities – such as, information and referral, training technical assistance to service providers, state legislators and other policy makers, conducting self-advocacy training, and raising public awareness.

While the P&As have a broad mandate, they have insufficient resources to respond to all of the needs of their constituents. The P&A statutes require each P&A to set priorities annually using a process that maximizes consumer input. The statutes also require each P&A to implement a grievance procedure for clients and prospective clients.

All P&A advocacy services are based on a philosophy of self-determination, equal access, and peer support to be achieved through individual, professional and systemic advocacy. Services are delivered in a manner that is intended to maximize leadership, independence, productivity and integration of individuals with disabilities.

P&A Agencies

P&A funds are allocated under most of the program statutes through formula grants based on population, but the smallest states are guaranteed a “minimum allotment” for most programs. Some of the P&As operate using only their federal funds, some receive additional moneys from other federal or state programs, and some also do private fund-raising. As noted above, most of the P&As are private non-profit organizations with typical non-profit board management. Eleven are state agencies(although the New York state agency contracts out the P&A services to other entities) or semi-independent state agencies, and a few are housed within civil legal services agencies. Redesignations for “good cause” occur occasionally – most often it has been the P&A moving out of state government to a non-profit; but it has moved the other direction once or twice.

About half of the P&A Executive Directors are not attorneys. All have attorneys on staff, as well as non-attorney advocates. Some of the larger P&As have separate investigative units as well.

Technical Assistance to the P&A network

Over time, Congress responded to requests from the P&A system to provide for training and technical assistance geared to their specific needs. Now, each of the P&A statutes provides for a small portion of the appropriated program funds to be set aside for training and technical assistance. These funds support several conferences each year and ongoing training and technical assistance through the development of manuals, other materials, listservs, and individualized technical assistance. Most of the training and technical assistance funds are administered through TASC, the Training Advocacy and Support Center, which is a division of NDRN, the National Disability Rights Network. NDRN is the voluntary membership organization for the P&As. (NDRN was formerly the National Association of Protection and Advocacy Systems (NAPAS)).

Federal Administrators

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 and PAVA are administered by the Administration on Developmental Disabilities (ADD), located within the Administration for Children Youth and Families (ACF) at the U.S. Department of Health and Human Services (HHS)
• CAP and PAIR and PAAT 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
• PATBI is administered by the Health Resources and Services Administration within HHS.