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Protection and Advocacy Systems - Overview

 

Image of Justitia, the Roman goddess of Justice, portrayed with a blindfold, holding the scales of justice in one hand and a sword in the other.  Draped in flowing robes, mature but not old, she symbolizes the fair and equal administration of the law without corruption, avarice, prejudice, or favor.Protection and Advocacy agencies (P&As), located in every state, have been the primary non-federal enforcers of the disability rights statutes. The P&A System is a national network of congressionally created, legally based disability rights agencies providing legal representation and other advocacy services to people with disabilities. In enforcing the laws, P&As work to provide people with disabilities equal access to employment opportunities, public services, and public accommodations. Through advising people of their rights and responsibilities, conducting informal negotiations on behalf of individual clients, and initiating systemic campaigns to remedy violations in their states, P&As have been making the promises of the law into realities.

This overview topic explains what the Protection and Advocacy (P&A) Systems are, how they work, and what services they provide. You may read through the topic or jump to specific sections by using the links to sections of this topic below.

Links to Sections of this topic:

           P&A System Description

           P&A Programs

o                   Protection and Advocacy for Persons with Developmental Disabilities (PADD)

o                   Protection and Advocacy for Individuals with Mental Illness (PAIMI)

o                   Protection and Advocacy for Individual Rights (PAIR)

o                   Client Assistance Program (CAP)

o                   Protection and Advocacy for Assistive Technology (PAAT)

o                   Protection and Advocacy for Beneficiaries of Social Security (PABSS)

o                   Protection and Advocacy for Traumatic Brain Injury (PATBI)

o                   Protection and Advocacy for Voter Access (PAVA)

           P&A System Activities

           Eligibility and Priorities

           P&A System Concerns

o                   Education

o                   Client Assistance Program

o                   Americans with Disabilities Act (ADA)

o                   Barriers to Daily Living

o                   Housing

o                   Abuse and Neglect

o                   Community Integration as a Standard of Living

           P&A Contact Information

o                   National

o                   State

           State P&A Topics

           Advocacy Terms and Definitions

           Advocacy Acronyms

 

P&A System Description

The Protection and Advocacy (P&A) System and Client Assistance Program (CAP) comprise the nationwide network of congressionally mandated, legally-based disability rights agencies. P&A agencies have the authority to provide legal representation and other advocacy services, under all Federal and State laws, to all people with disabilities (based on a system of priorities for services). All P&As maintain a presence in facilities that care for people with disabilities, where they monitor, investigate and attempt to remedy adverse conditions. These agencies also devote considerable resources to ensuring full access to inclusive educational programs, financial entitlements, healthcare, accessible housing and productive employment opportunities. CAP agencies (many of which are housed within P&A offices) provide information and assistance to individuals seeking or receiving vocational rehabilitation services under the Rehabilitation Act, including assistance in pursuing administrative, legal and other appropriate remedies.

Each state has a designated federally funded, federally mandated, Protection and Advocacy agency (P&A). In some states, P&A agencies are part of the government; however, typically they are independent not-for-profit organizations.

Congress has created distinct statutory programs to address the needs of different populations of persons with disabilities. P&As provide legally-based advocacy services under the following programs:

                    Protection and Advocacy for Persons with Developmental Disabilities (PADD)

                    Protection and Advocacy for Individuals with Mental Illness (PAIMI)

                    Protection and Advocacy for Individual Rights (PAIR)

                    Client Assistance Program (CAP)

                    Protection and Advocacy for Assistive Technology (PAAT)

                    Protection and Advocacy for Beneficiaries of Social Security (PABSS)

                    Protection and Advocacy Traumatic Brain Injury Program (PATBI)

                    Protection and Advocacy for Voter Access (PAVA)

These eight programs may be operated by one or more agencies in each of the 57 states and territories. The ability of both PADD and PAIR to serve a particular individual with a disability is limited, however, by its program priorities for case selection, which must be developed on an annual basis due to limited resources.

 

P&A Programs

Protection and Advocacy for Persons with Developmental Disabilities (PADD)

The Protection and Advocacy for Persons with Developmental Disabilities (PADD) Program was created by the Developmental Disabilities Assistance and Bill of Rights (DD Act) of 1975. P&As 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 under all applicable Federal and State laws. The governor in each State designated an agency to be the P&A system and provided assurance that the system was and would remain independent of any service provider. 1994 amendments to the DD Act expanded the system to include a Native American P&A program. The Administration for Children Youth and Families, Administration on Developmental Disabilities (ADD) administers the PADD program.

Protection and Advocacy for Individuals with Mental Illness (PAIMI)

The Protection and Advocacy for Individuals with Mental Illness (PAIMI) Program was established in 1986. Each state has a PAIMI program, which receives funding from the national Center for Mental Health Services. Agencies are mandated to (1) protect and advocate for the rights of people with mental illness, and (2) investigate reports of abuse and neglect in facilities that care for or treat individuals with mental illness. Agencies provide advocacy services or conduct investigations to address issues, which arise during transportation or admission to, the time of residency in, or 90 days after discharge from such facilities. The system designated to serve as the PADD program in each state and territory is also responsible for operating the PAIMI program. The Substance Abuse and Mental Health Services Administration, Center for Mental Health Services (CMHS) administers the PAIMI program.

Protection and Advocacy for Individual Rights (PAIR)

The Protection and Advocacy for Individual Rights (PAIR) Program was established by Congress as a national program under the Rehabilitation Act in 1993. PAIR programs were established to protect and advocate for the legal and human rights of persons with 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. The system designated to serve as the PADD program in each state and territory is also responsible for operating the PAIR program. The Office of Special Education and Rehabilitative Services, Rehabilitation Services Administration (RSA) administers PAIR.

Client Assistance Program (CAP)

The Client Assistance Program (CAP) was established as a mandatory program by the 1984 Amendments to the Rehabilitation (Rehab) Act. Every State and territory, as a condition for receiving allotments under Section 110 of the Rehab Act, must have a CAP. CAP services include assistance in pursuing administrative, legal and other appropriate remedies to ensure the protection of persons receiving or seeking services under the Rehab Act. The Rehabilitation Services Administration also administers CAP.

Protection and Advocacy for Assistive Technology (PAAT)

The Protection and Advocacy for Assistive Technology (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 and their family members, guardians, advocates and authorized representatives in accessing technology devices and assistive technology services" through case management, legal representation and self advocacy training. Originally passed by Congress in 1988, the Tech Act set up a lead agency in each state to coordinate activities to facilitate access to, provision of and funding for assistive technology devices and services for individuals with disabilities. The Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR) administers PAAT.

Protection and Advocacy for Beneficiaries of Social Security (PABSS)

The PABSS program was established in 1999 when the Ticket to Work and Work Incentive Improvement Act (TWWIIA) was enacted into law. The intent of this Act was the provision of health care, employment preparation and placement services to individuals with disabilities. The legislation also established a return to work "Ticket" program to allow individuals with disabilities to seek the services necessary to obtain and regain employment, thus reducing their dependency on cash benefit programs. At that time, Congress recognized that many people with disabilities face major barriers in their efforts to leave the benefit rolls for full employment. Therefore, Congress authorized SSA to make payments to the protection and advocacy (P&A) system in each state for the purpose of providing information and advocacy services to beneficiaries with disabilities who want to work and to provide advocacy or other services that beneficiaries with a disability may need to secure or regain gainful employment. The Social Security Administration administers PABSS.

See the separate Protection and Advocacy for Beneficiaries of Social Security (PABSS) Program for additional information.

Protection and Advocacy for Traumatic Brain Injury (PATBI)

In 1996 Congress authorized the Health Resources and Services Administration (HSRA) Maternal and Child Health Bureau to implement state grant programs to improve access to health and other services for individuals with traumatic brain injury (TBI) and their families. The Children's Health Act of 2000 reauthorized this program and established a TBI protection and advocacy program for eligible persons. Competitive grants, awarded for the first time in FY 2002 as part of the reauthorization of the TBI Grant Program, went to P&A systems in 28 states, four U.S. territories and one tribal agency. The remainder of the states were awarded grants in FY 2004. All states are now funded annually under a formula grant program.

Protection and Advocacy for Voter Access (PAVA)

The Help America Vote Act of 2002 (HAVA) was passed by Congress to improve the administration of elections in the United States. The Act provides financial assistance to states, and creates new minimum standards for states to follow in several key areas of election administration. Among other things, these new standards deal with voting systems, voting accessibility, statewide computerized voter registration lists, provisional voting, information provided to voters and voter registration by mail. P&A systems monitor the implementation of this act with particular concern for the right of people with disabilities to vote. Special concerns are accessibility for people with disabilities, the ability to cast a secret ballot, and methods that allow people with vision impairments and arm or hand mobility impairments to cast their ballot. The Administration for Children Youth and Families, Administration on Developmental Disabilities (ADD) administers the PAVA program.

P&A System Activities

Typical activities of a P&A System include:

                   investigating, negotiating or mediating solutions to problems expressed by persons with disabilities eligible for P&A and CAP services;

                   providing information and technical assistance to individuals, attorneys, governmental agencies, services providers and other advocacy organizations;

                   providing legal counsel and litigation services to eligible persons and groups who satisfy the established priorities for the provision of services; and

                   providing education and training for their staff, governing boards, advisory councils, volunteers, service delivery professionals, constituency groups and the community.

In addition, P&A systems interact with elected and appointed officials to share information, in order to assist policy makers in making legislative and administrative changes, which benefit persons with disabilities.

 

Eligibility and Priorities

The DD Act requires that PADD clients meet the definition of developmental disabilities as defined in the Act as chronic and attributable to mental and/or physical impairments which must be evident prior to the age of twenty-two. They tend to be life long and result in substantial limitations in three or more of the major life areas: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency.

Individuals eligible for PAIMI must have significant mental illness or emotional impairment and reside in residential facilities. These facilities, which may be public or private, include hospitals, nursing homes community facilities, board and care homes, homeless shelters, jails and prisons. PAIMI may address issues that arise during transposition or admission to, the time of residency in, or 90 days after discharge from such facilities.

Persons eligible for PAIR are individuals with disabilities who are not eligible for the PADD or PAIMI programs, or whose issues do not fall within the jurisdiction of CAP.

Individuals eligible for CAP are those persons who are seeking or receiving services from a Rehab Act project, program or community rehabilitation program.

In addition, P&As develop priorities, after receiving public comment which establish case selection criteria. Priorities must insure that the most vulnerable populations or those with complex advocacy needs are served before less vulnerable populations. P&As must reach out to un-served or under-served populations. The need to prioritize is necessary as the demand for representation often exceeds the resources of the P&A system.

 

P&A System Concerns

Education

P&As handle a large number of education cases each year, serving students with disabilities from birth through their final year of special education entitlement (age 21 in most states, but as late as age 26 in others). A broad range of services is available from the P&A network, from information booklets and brief answers to multi-year litigation involving entire states and some of the largest school districts in the nation.

Here are some examples of the types of education work P&As provide:

                   Training parents how to attend Individualized Education Program (IEP) meetings,

                   Enforcing provision of Functional Behavioral Assessments and adherence to Behavioral Intervention Plans, and

                   Litigating systemic violations of IDEA and other Special Education legislation.

Client Assistance Program

Client Assistance Programs (CAPs) work to ensure that people with disabilities are afforded the opportunity to prepare for and engage in employment opportunities that meet their unique needs in order to obtain real jobs with real wages, creatively using their authority to improve the quality and range of Vocational Rehabilitation and other services to assure that individuals with disabilities are able to work. CAP Advocates address complaints regarding access to the vocational rehabilitation services people with disabilities need in order to prepare for or engage in employment.

Examples of issues addressed by CAPs include:

                   Incorrect eligibility decisions,

                   Accommodation and access requirements,

                   Denial of medical services,

                   Limitation of client choice,

                   Violations of the Rehabilitation Act,

                   Completion of Individualized Plans for Employment (IPE) in accessible formats, and

                   Appropriate transportation.

Americans with Disabilities Act (ADA)

The American with Disabilities Act (ADA), which was enacted in 1990, prohibits discrimination against individuals with disabilities in the work place. To open the work place to individuals with disabilities, P&As challenge many different types of disability-related employment discrimination. Examples include:

                   Inaccessible application systems,

                   Illegal pre-hire questions,

                   Failure to hire because of a disability,

                   Withdrawal of job offers after disclosure of a disability,

                   Failure to provide reasonable accommodations,

                   Disparate treatment,

                   Disability-based harassment, and

                   Reassignment/Termination.

Barriers to Daily Living

The ADA brought the promise of integration and equality for persons with disabilities. However, people with disabilities may still encounter barriers in some aspects of their daily lives. Barriers to access, communication, transportation, and a myriad of other activities may continue to hinder individuals with disabilities as they seek to integrate themselves into their communities. As the primary non-federal enforcers of the ADA, P&As work to eliminate barriers that people with disabilities face through education, advocacy and litigation efforts.

Housing

For millions of persons with disabilities decent, safe, affordable, and accessible housing is difficult or impossible to obtain. Further, individuals with disabilities sometimes face discrimination due to stereotypes and unfair rules and policies that exclude them from housing. P&As work to eradicate housing discrimination through such activities as:

                   Requiring Housing Authorities to comply with Federal mandates, such as the Fair Housing Act,

                   Obtaining accessibility enhancements,

                   Securing changes in policies that adversely affect persons with disabilities, including those with relation to service animals, and

                   Advocating for systemic change that will create more housing options for persons with disabilities.

Abuse and Neglect

Congress originally enacted the P&A statutes in response to inhumane conditions in state facilities and to protect the human and civil rights of vulnerable persons with disabilities. In legislation empowering P&As to serve persons with mental illness, Congress expressly determined that "State systems for monitoring compliance with respect to the rights of individuals with mental illness vary widely and are frequently inadequate" and clarified that a primary role for the System is to act as the ultimate check on such inadequate monitoring systems.

Among other authorities, P&As are empowered to: (1) investigate incidents of abuse and neglect of persons with developmental disabilities, mental illness and other disabilities; and (2) pursue legal, administrative and other appropriate remedies upon their behalf to ensure the enforcement of their constitutional and statutory rights. P&As' authorizing legislation provides detailed express authority to gain broad access to records, as well as to facilities and residents, to ensure that these mandates can be effectively pursued.

Unfortunately, abuse and neglect of people with disabilities sometimes occurs in institutional and community settings such as group homes. And some state systems for protecting the safety and rights of people with disabilities are inadequate. Such systems are not held accountable under state law and lack stringent standards for their operations. In addition, some of these systems, and the service providers they regulate, strongly resist disclosure of information about their performance and investigative findings to P&As and other advocacy groups, family members of victims of abuse and other interested persons.

In spite of a relatively low level of resources available nationwide, the P&A System must address these barriers and ensure that appropriate systemic and individual corrective actions are implemented. P&As use practical strategies such as the following:

                   Conducting direct investigations of facilities and other service providers;

                   Reviewing the investigations conducted by service providers themselves or state agencies, and intervening when the process or outcomes raise questions;

                   Analyzing trends in reported incidents in facilities, regions, or across the state and making recommendations for changes in policies and practices;

                   Routinely monitoring health and safety conditions at facilities;

                   Issuing public reports about inadequate systems of care and oversight and public alerts about dangerous practices; and

                   Working with policy makers at the state level to ensure that effective standards are implemented to address these issues.

Community Integration as a Standard of Living

State progress in developing new and better community-based services is driven in large part by Medicaid law, the most common method states use to fund these supports and services. Therefore, P&A advocacy often involves ensuring that providers and state officials properly enforce Medicaid.

In addition to individual and group representation, P&As seek out opportunities to inform state officials and legislators about the need for new and increased community support options that are flexible and promote self-direction.

P&As also provide information and training to empower people with disabilities to seek administrative and legislative action on their own behalf. P&As work with stakeholder groups to apply for Federal "real choice systems change grants" aimed at helping to fund community integration programs.

A major focus of P&A self-advocacy information concerns the landmark 1999 U.S. Supreme Court decision in Olmstead v. L.C. In Olmstead, the highest court in the land said that unnecessary segregation and institutionalization of people with disabilities constitutes discrimination and violates the ADA. Focusing on state efforts to provide individuals with services in the community and comply with the Olmstead decision is crucial to P&A work at both the legal and advocacy level.

 

P&A Contact Information

National

National Disability Rights Network (NDRN) logoThe National Disability Rights Network (NDRN) -- previously the National Association of Protection and Advocacy Systems (NAPAS) -- is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities. Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.

Through training and technical assistance, legal support, and legislative advocacy, the National Disability Rights Network works to create a society in which people with disabilities are afforded equality of opportunity and are able to fully participate by exercising choice and self-determination.

The National Disability Rights Network serves individuals with a wide range of disabilities -- including, but not limited to, those with cognitive, mental, sensory, and physical disabilities -- by guarding against abuse; advocating for basic rights; and ensuring accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems.

You can contact NDRN at:

National Disability Rights Network
900 Second Street, NE, Suite 211
Washington, D.C. 20002

Phone: 202-408-9514
Fax: 202-408-9520
TTY: 202-408-9521

Website: http://www.ndrn.org/

State

NDRN maintains a list of the P&A agencies in each state, with complete contact information for each. Many of the State agencies also have web addresses listed. Go to the NDRN homepage below, then look for the "Choose Your State" item:

http://www.ndrn.org/

 

State P&A Topics

                   Delaware Disabilities Law Program

                   Georgia Client Assistance Program (CAP)

                   Georgia Protection and Advocacy Services

                   Iowa Client Assistance Program

                   Iowa Protection and Advocacy Services

                   Massachusetts Client Assistance Program

                   Massachusetts Disability Law Center

                   Oklahoma Client Assistance Program

                   Oklahoma Disability Law Center

                   South Carolina Advocacy Services - Client Assistance Program

                   South Carolina Protection and Advocacy for People with Disabilities, Inc.

                   South Dakota Advocacy Services

                   Virginia Office for Protection and Advocacy (VOPA)

 

Advocacy Terms and Definitions

Administrative Appeals - Providing non-litigation based remedies on behalf of people with disabilities through the appeal process or through the complaint process of a Federal, state or local agency with investigatory and/or enforcement authority relating to violations of civil rights.

Class Action Litigation - Filing a lawsuit on behalf of a group or "class" of people.

Counseling/Advice - Providing information or advice to a client (who has an open case) or explaining to persons with disabilities their rights to receive particular services.

Impact on Policy Makers - Changing a procedure or practice due to the involvement of a P&A in a case.

Individual Litigation - Filing a lawsuit on behalf of a client.

Information/Referral - Brief written or verbal information, including information about the P&A and additional resources, provided in response to individual requests and needs.

Investigation - Examining information, records, evidence, and circumstances surrounding a specific allegation of abuse or neglect. Investigations are undertaken to determine if there is basis for action on behalf of the client. Requires a significant amount of time and resources.

Legislative Advocacy - Contributing to the understanding of legislation.

Mediation/Negotiation - Two parties meeting, with or without the assistance of a third party facilitator, in an attempt to resolve a dispute without resorting to litigation.

Monitoring - Examining information or records to ascertain whether there is a pattern of practice which is abusive, exploitative, or violates the rights of persons with disabilities receiving services from a specific provider.

Self-Advocacy - Teaching people with disabilities how to advocate for themselves.

Training/Education/Outreach - Sharing information with people, which promotes a greater understanding of the rights of people with disabilities.

 

Advocacy Acronyms

ACF

Administration for Children and Families

AC

Advisory Council

ADA

Americans with Disabilities Act

ADD

Administration on Developmental Disabilities

ATC

Assistive Technology Center

ATTAC

Advocacy Training and Technical Assistance Center

BOD

Board of Directors

CAP

Client Assistance Program

CMS

Center for Medicare and Medicaid Services

CMHS

Center for Mental Health Services

DD

Developmental Disabilities

DD Act

Developmental Disabilities Assistance and Bill of Rights Act

DDC

Developmental Disabilities Council

DSA

Designated State Agency

FAPE

Free and Appropriate Public Education

FY

Fiscal Year

HRSA

Health Resources and Services Administration

IDEA

Individuals with Disabilities Education Act

IL

Independent Living

ILCs

Independent Living Centers

LD

Learning Disability

MI

Mental Illness

MR

Mental Retardation

MTARS

Monitoring and Technical Assistance Review System

NAPAS

National Association of Protection and Advocacy Systems

NIDRR

National Institute on Disability and Rehabilitation Research

OMB

Office of Management & Budget

OSERS

Office of Special Education Rehabilitation Services

P&A

Protection and Advocacy System

PAAT

Protection and Advocacy for Assistive Technology

PABSS

Protection and Advocacy for Beneficiaries of Social Security

PADD

Protection and Advocacy for Persons with Developmental Disabilities

PAIMI

Protection and Advocacy for Individuals with Mental Illness

PAIR

Protection and Advocacy for Individual Rights

PATBI

Protection and Advocacy for Traumatic Brain Injury

PAVA

Protection and Advocacy for Voter Access

PPR

Program Performance Report

RSA

Rehabilitation Services Administration

SAMHSA

Substance Abuse and Mental Health Services Administration

SOP

Statement of Objectives & Priorities

SSDI

Social Security Disability Insurance

SSI

Supplemental Security Income

RSA

Rehabilitation Services Administration

TASR

Technical Assistance Site Review (CMHS)

Tech Act

Technology-Related Assistance for Individuals with Disabilities Act

UAP

University Affiliated Program

UCE

University Centers for Excellence in Developmental Disabilities Education, Research, and Service

TBI

Traumatic Brain Injury

Acknowledgements

Much of this topic is drawn from information provided by the National Disability Rights Network (NDRN), the voluntary national membership association of the P&As and CAPs.


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