THE PROTECTION AND ADVOCACY SYSTEM AND

COLLABORATION WITH LEGAL SERVICES PROGRAMS

By Gary P. Gross, Senior Public Policy Counsel,
National Association of Protection and Advocacy Systems

[published in the Management Information Exchange Journal, Summer 2001 issue]

The protection and advocacy (P&A) system – the nationwide network of federally-mandated disability rights agencies – and legal services programs (including federally and IOLTA-funded programs as well as other public interest law offices) have a shared mission of providing high quality legal services to persons who may be disenfranchised. The networks should pool their collective resources wherever possible to enhance our effectiveness. This article discusses the P&A network's structure and accomplishments, and suggests specific areas for collaboration, on a local level, between the P&A system and legal services programs and other public interest law practices (collectively referred to herein as legal services programs).

The P&A System's Structure and Mandates

Overview

P&As are mandated under various Federal statutes (see next section) to provide legal representation and other advocacy services to all persons with disabilities. Indeed, P&As, collectively, are the largest providers of legally-based advocacy services to people with disabilities in the United States. These services are provided through a variety of vehicles: individual representation, educating policy makers, advocacy for groups, information and referral services, rights education and self advocacy training. The fundamental mission of the P&A system is to respond to allegations of abuse, neglect and violations of the rights of persons with disabilities, including discrimination based on disability. P&As devote considerable resources to ensuring full access to inclusive educational programs, financial entitlement programs (e.g., Medicaid and Social Security), health care, accessible housing, and productive employment opportunities.

P&As accomplish these goals by pursuing legal, administrative, and other appropriate remedies under all appropriate Federal, state and local laws (e.g., the Americans with Disabilities Act, the Individuals with Disabilities Education Act, and the Fair Housing Act). Approximately 98 percent of P&A cases are resolved voluntarily, without resort to litigation. In fiscal year 1999 alone, P&As assisted almost 60,000 individual clients nationwide, and provided some form of service, directly or indirectly, to more than 750,000 people with disabilities and their family members.

P&As receive training and technical assistance services through the Advocacy Training and Technical Assistance Center (ATTAC). ATTAC is a federal interagency project funded by the Administration on Developmental Disabilities and the Center for Mental Health Services, agencies within the Department of Health and Human Services, and the Rehabilitation Services Administration, which is within the Department of Education. In turn, ATTAC is a component of the National Association of Protection and Advocacy Systems (NAPAS). NAPAS is a voluntary membership association which facilitates coordination among P&As, and represents their interests before Congress and the executive branch of government.  

Statutory Authority

The P&A system is governed by three statutory programs which provide mandates to serve particular disability populations, and establish distinct formula grant programs for these services. The statutes establish parallel authorities for P&As relating to advocacy activities and remedies that may be pursued upon behalf of targeted populations. The funding levels for each of these programs varies, affecting the relative level of available services for each beneficiary group.

The DD Act. The first of these statutory programs, the Developmental Disabilities Assistance and Bill of Rights (DD) Act, established the P&A system in 1975. The Act was amended in 2000 (Public Law 106-402) to expand a number of P&A authorities; the amended Act will be codified at 42 U.S.C. 15001 et seq. (Regulations implementing the statute are published at 45 CFR Part 1386.) The statute's passage was prompted in part by reports of inhumane and horrific conditions at Willowbrook, a New York State institution for persons with developmental disabilities. The Act was passed to protect the human and civil rights of this and similar vulnerable populations. Congress recognized that a federally-directed system of legal advocacy is necessary "to ensure the humane care, treatment, habilitation and protection" of persons with mental retardation and other developmental disabilities. Persons are eligible for service under the DD Act only if they have a severe, chronic disability which manifested before the age of 22 and which results in substantial functional limitations in three or more major life activities. Such disabilities include mental retardation, autism and cerebral palsy.

The PAIMI Act. In 1986, following congressional hearings and investigations which substantiated numerous reports of abuse and neglect in state psychiatric hospitals, former Senator Weicker introduced the bill which eventually became the Protection and Advocacy for Individuals with Mental Illness Act of 1986 (the PAIMI Act), 42 U.S.C. 10801 et seq. (The Program's regulations are published at 42 CFR Part 51.) The PAIMI Act, modeled after the DD Act, extended similar protections to persons with mental illness who reside in facilities. In passing the original legislation, Congress recognized that existing state systems responsible for protecting the rights of this population varied widely and were frequently inadequate.

Until an amendment to the Act in 2000, eligibility under the PAIMI Program was generally limited to persons with a significant mental illness or emotional impairment who are inpatients or residents of a treatment facility (including any private or public residential setting that provides overnight care such as hospitals, prisons, jails and nursing homes). In late 2000, the Act was amended to authorize P&As to serve persons with a significant mental illness or emotional impairment who live in community settings, including their own homes. However, the amendment provides that this expanded authority shall apply only in years in which the congressional appropriation for the PAIMI Program reaches $30 million or more (this threshold was reached for the first time in fiscal year 2001). P&As are required by the amendment to give priority in their services to persons residing in institutional settings. Given this expanded authority, P&As are now considering strategies to effectively and systemically address the anticipated increased demand for services from people with mental illness living in the community (who have long been in need of advocacy services).

The PAIR Program. In 1994, Congress provided, for the first time, full funding for the Protection and Advocacy of Individual Rights (PAIR) Program (29 U.S.C. 794e), which was established in 1978 under the Rehabilitation Act (regulations are published at 34 CFR 381). The PAIR program provides P&As nationwide the authority to serve persons with disabilities who are not eligible under the PADD and PAIMI programs. The PAIR Program supports much of P&As' work under the Fair Housing Act and the Americans with Disabilities Act (ADA). Although the program is funded at a much lower level than the DD and PAIMI Programs, it is a vitally important component of a comprehensive effort to advocate for the rights of all persons with disabilities. Persons eligible for PAIR services include those with head or spinal cord injury, multiple sclerosis, HIV infection and AIDS, cancer, heart disease, mobility impairments, etc.

Other Related Programs. Congress also established two related, but more limited, advocacy programs. The first is the Client Assistance Program (CAP), which was established as a mandatory formula grant program by the 1984 Amendments to the Rehabilitation Act (29 U.S.C. 732). Under this program, agencies are mandated to 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 to ensure the protection of their rights. (These agencies are themselves referred to as client assistance programs, and may be housed within a P&A or be free-standing, independent agencies).

In 1994, Congress created a new mandate for P&As with the passage of amendments to the Technology-Related Assistance for Individuals with Disabilities Act (29 U.S.C..2201 et seq.). Under this program, P&As are separately funded to assist individuals with disabilities, their family members and advocates, in accessing assistive technology devices and services (e.g., motorized wheelchairs, "talking" computers, and adaptive computer software) through case management, legal representation and self-advocacy training. P&As are mandated to help facilitate, through legally based advocacy, changes in laws, regulations, policies and practices that impede the availability or provision of assistive technology devices and services.

Selected Authorities and Responsibilities

P&As have the responsibility to protect and advocate for persons with disabilities, often including those who cannot speak for themselves. To do this, Congress gave the P&As unique authorities and responsibilities. These authorities and responsibilities go well beyond those of a conventional law firm in various specific ways.

General Legal Mandate. P&As are expressly empowered to investigate incidents of abuse, neglect or violations of the rights of persons with disabilities. The P&A may initiate an investigation if it believes that there is probable cause that an incident of abuse or neglect occurred. P&As are also authorized to pursue legal, administrative and other appropriate remedies upon behalf of persons with disabilities to ensure the enforcement of their constitutional and statutory rights.

"Access" Authority. To ensure that their ambitious mandates can be effectively pursued, Congress granted P&As broad access to the records of individuals with disabilities and to facilities in which they reside. For instance, P&As may review records of individuals with disabilities (concerning their treatment, discharge planning, and/or incidents of abuse/neglect) under the following circumstances, among others: where an individual does not have capacity to consent and does not have a guardian (or the guardian is the state) – when abuse or neglect is suspected. Moreover, P&As are entitled to reasonable access to facilities that care for persons with disabilities (provided such access does not interfere with clinical or other care activities) when necessary to conduct an investigation of abuse or neglect or to monitor the treatment and safety of residents.

"Standing." P&As have standing to bring lawsuits in their own right, that is, to act as the named plaintiff. P&A "standing" is also critically important because many people with disabilities who reside in institutions fear retaliation if initiating legal action. Further, persons with disabilities are sometimes unable to play a direct role in a lawsuit because of the failure of a guardian to cooperate.

The courts have concluded that because of P&As' special statutory mandate – to protect the statutory and constitutional rights of persons with disabilities – they are acting as representatives of the interests of such persons, and thus may bring suit to vindicate their rights. Also, standing is conferred, given that P&A legislation requires that agency governing boards and advisory councils be comprised in part of people with disabilities and their family members, and that the disability community play a significant role in developing the agency’s priorities for services. Accordingly, the courts have fond that P&As can bring lawsuits on behalf of the disability community much like a membership association. One court observed that “in a very real sense” the P&A System provides the means by which people with disabilities “express their collective views and protect their collective interests” in each state. Doe v. Stincer, 175 F.3d 879, 886 (11^th Cir. 1999).

Accountability Mechanisms. Congress built into the P&A System many features which assure that it is responsive to the needs of the local disability community. For instance, direct consumer involvement in governing the P&A is required to ensure local control by those most affected. The P&A's governing board must consist of persons who broadly represent and are knowledgeable about the needs of individuals seeking P&A assistance. The PAIMI Program, for example, requires that at least 60 percent of the agency's advisory council be individuals who have received or are receiving mental health services, or are family members of such individuals. P&As must also have an internal grievance procedure for current and prospective clients to assure that such persons have full access to quality advocacy services.

Priorities. To ensure that each P&A program meets the most critical needs of the disability community in its state, each is required to develop annual priorities with input from the public. The process of establishing priorities allows each P&A to select desired outcomes which meet the unique needs of individuals with disabilities living in the state. Consumer-driven and responsive priorities allow the P&A to decide at the state level about how P&A services for people with disabilities are structured.

Examples of P&A Initiatives

Abuse and Neglect. All P&As maintain a presence in facilities that care for people with mental illness and developmental disabilities, investigating and remedying abusive and neglectful conditions, including sexual assault, inappropriate restraint and seclusion, inappropriate forced medication, and the failure to carry out treatment programs and provide adequate nutrition. In fiscal year 1999 alone, P&As investigated nearly 17,000 alleged incidents of abuse and/or neglect among people with mental illness (plus thousands more relating to other disabilities). P&As are in the forefront of efforts to eliminate deadly restraint and seclusion practices across the country. Over the last two years, there have been numerous press and government reports substantiating that the misuse of seclusion (forced isolation) and restraint (the use of physical holds, mechanical devices and/or drugs to immobilize patients with disruptive behaviors) has resulted in perhaps 100 or more deaths each year. Under recently passed legislation (The Children’s Health Act of 2000, Public Law 106-310, October 17, 2000), Federal standards on the use of restraint and seclusion have been established for virtually all federally funded health care facilities. In addition, these facilities are now required, under this statute and regulations issued by the Department of Health and Human Services, to report to P&As and other agencies deaths and injuries related to restraint and seclusion so that these incidents can be investigated and prevented in the future. P&As are currently very actively investigating these incidents and pursuing appropriate corrective actions, including litigation and negotiations to reform to facility and statewide restraint practices.

Special Education. Approximately 30-40 percent of the P&A caseload involves accommodation of students with disabilities in public schools – primarily cases arising under the Individuals with Disabilities Education Act (IDEA ) or Section 504 of the Rehabilitation Act of 1973. The P&A system provides a wide array of services in this area, ranging from phone assistance to parents advocating for special education students to complex systemic litigation. P&As have litigated cases involving the systemic failure to provide legally required services to students with disabilities against states (e.g., Arizona), large urban districts (e.g., Baltimore, Los Angeles) and the Bureau of Indian Affairs. In some cases, entire populations of IDEA eligible students were still receiving little to no education at all, although the law has been in effect for over twenty five years.

On an individual level, P&As frequently have been successful in pursing cases which have ensured the right of students to attend their neighborhood schools, rather than being bussed or housed at separate schools for students with disabilities. They have also achieved much success in preventing suspension or expulsion due to non-dangerous behavior caused by disabilities. Recently, a P&A prevented the full year expulsion of a student who had brought to school a commercially produced Halloween costume with a gun-shaped glove.

Appropriate Community Services. The United States Supreme Court’s decision in Olmstead v L.C., 119 S. Ct. 2176 (1999), makes it clear that unnecessary institutionalization of persons with disabilities amounts to prohibited discrimination violating Title II of the Americans with Disabilities Act (ADA). Under the Court's decision, States are required to provide community-based services for persons with disabilities who would otherwise be entitled to institutional services when treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement can be reasonably accommodated by the state. A state can establish compliance with these requirements if it demonstrates that it has a comprehensive, effectively working plan for placing qualified persons with disabilities in less restrictive settings. For years prior to the Olmstead ruling, P&As had taken the lead in enforcing this “integration mandate”of the ADA in the lower federal courts. Following this ruling, P&As have joined with people with disabilities and civil rights advocates to ensure that the Olmstead decision is realized in all our nation’s communities.

In states across the country, P&As are hosting meetings bringing the broader disability community together to discuss immediate Olmstead action steps, for example, letter-writing campaigns, coalition building, and other efforts to advance states’ Olmstead implementation efforts to move people from institutional to community services. In addition, P&As have met with or written to appropriate state officials to explain the implications of Olmstead and to seek a state commitment to working with individuals with disabilities on compliance. Moreover, P&As have continued to use the courts to stop unnecessary institutionalization in violation of the ADA and to address the broad range of community integration issues, including: access to Medicaid benefits, mental health services, and housing supports to facilitate community integration; obtaining services for parents with disabilities to prevent termination of parental rights; and enforcement of psychiatric advance directives.

Americans with Disabilities Act (ADA). P&As are the primary non-federal enforcers of the ADA, and many have initiated successful systemic campaigns to remedy ADA violations in their states. The Pennsylvania P&A, for example, recently filed suit against a number of restaurants, retail stores, and other local establishments in order to call attention to the everyday barriers that people with physical disabilities encounter, and to the ease with which such barriers can be removed, so that everyone can enjoy these facilities and services. P&As in other states (e.g., Hawaii, and Louisiana) have initiated similar campaigns, and almost every P&A has brought an ADA action on behalf of a client who was denied goods or services because of his/her disability. In light of the Supreme Court's recent decision in Board of Trustees of the University of Alabama v. Garrett, No. 99-1240 (Feb. 21, 2001), in which the Court held that employment discrimination suits for money damages against the state are barred by the Eleventh Amendment, P&As will now be devoting significant time and resources into defending the constitutionality of the public services portion of the ADA (Title II).

Social Security Advocacy. Under a new Federal initiative, P&As are now beginning to receive targeted funding to support their advocacy efforts on behalf of Social Security beneficiaries seeking employment. This initiative presents a significant opportunity for collaboration between the P&A network and legal services programs. In 1999, Congress passed the Ticket to Work and Work Incentives Improvement Act (TWWIIA) authorizing the Social Security Administration to make grants, beginning in April 2001, to each P&A system for the purpose of supporting advocacy services for Social Security beneficiaries who wish to work. Under the program, P&As will be providing information and advice about securing vocational rehabilitation and employment services, and investigating and resolving disputes relating to such services. Further, many P&As provide limited assistance to Social Security beneficiaries in one form or another – for example, advocacy services to persons with a history of drug and alcohol abuse and children in need of SSI benefits – although the type and level of assistance varies greatly depending on the financial resources and established priorities of the agency. With formula grant funding, and increased emphasis on "return to work" initiatives, P&As will now to be able to help sustain employment initiatives to remove barriers and increase the employment opportunities for people with disabilities.

Strategies for Collaboration

P&As and legal services offices (and other providers of legal services for the poor) share a common vision in vindicating the rights of persons who are sometimes living on the margins of society. In many specific circumstances, these offices have worked quite well in collaboration over the years to address common law reform concerns, and to simply share expertise and other resources. Indeed, a number of central and branch offices of P&As are housed within legal services programs, and many P&A attorneys got their start working at legal services programs and vice versa. In these times of fiscal cutbacks and calls for effective partnerships by Congress and the Administration, the two networks should renew their commitment to effective, systematic collaboration. Social Security and Medicaid issues present two potentially rich areas for collaboration between our networks, since legal services staff have historically provided assistance to beneficiaries of these systems, and P&As are becoming increasingly active in these areas themselves. Outlined below is a sampling of strategies the networks should use to promote collaboration.

o Information Sharing. In responding to requests for general information from persons with disabilities, both P&A and legal services programs should provide information about the other as a potential resource. Of course, in order to establish an effective information sharing system of this type, each office should become familiar with the other's operations and limitations. As a first step, meetings should be set up between the respective staffs of these agencies, and intake staff should be trained on these issues.

o Case Referrals. Case referrals can be made between the agencies where the office initially contacted is not in a position to provide the requested services (because of priories or resource constraints). In developing this approach, the agencies should share their respective priorities for services and other case selection criteria. Legal services programs should also bear in mind the unique authorities of P&As relating to standing and facility and records access when considering a referral.
o Contract and Co-Counsel Arrangements. Collectively, our networks possess the definitive knowledge and experiences on a broad range of poverty law and systemic reform issues. Whenever practical, the expertise should be pooled on complex cases. For instance, agencies might enter into co-counseling agreements and contract counsel arrangements.

o Amicus Support. Similarly, our sister agencies should regularly seek support in major reform cases through the filing of amicus briefs. Frequently, our respective networks can bring to the case a unique perspective or policy-based argument.

o Sharing Briefs and Pleadings. Our networks have developed over the years many pleadings, briefs and other litigation documents on common issues, and it would only make sense to share these valuable resources (especially through e-mail).

o Sharing of experts. Both networks have developed databases on effective experts as witnesses on a broad range of legal issues of common concern; this information should be shared systematically.

o Cross Training. Reciprocal training on issues of import to both networks would be beneficial. Training (which could be conducted collaboratively) might address litigation strategies, law office management, personnel questions, and substantive law issues such as Social Security and Medicaid advocacy.

o State-wide Coalitions. Planning should take place to address common advocacy and legislative concerns in the state; each of our networks should be a part of the other's law reform coalitions.

o Board Membership. In view of the depth of expertise within our systems, agencies should consider seeking out potential board members from each other's staffs or boards.

For information on the P&A in your state, please contact NAPAS at 202-408-9514 (voice), 202-408-9520 (fax) or 202-408-9521 (TDD), or see our webpage (which contains a full listing of P&As nationwide), at: www.protectionandadvocacy.com.