Reflecting on 20 Years of P&A in Illinois

by Zena Naiditch

Equip for Equality's President and CEO Zena Naiditch Equip for Equality celebrates its 20th anniversary in 2005. Later this year, we will be celebrating the accomplishments we have achieved in partnership with people with disabilities, their families and other advocacy and civil-rights organizations. Given this milestone, I think it is important to consider how the establishment of Equip for Equality came about and reflect on the expectations and vision of the state Protection and Advocacy (P&A) Systems almost three decades ago. For those more recently introduced to the P&A System, it is easy to take for granted the existence as an independent, legally-based advocacy system. Furthermore, for those of us here at Equip for Equality, understanding the evolution of the state's P&A System will be useful as we begin to think about future directions when we undertake strategic planning later this year.

The nationwide system of state P&A Systems began in the mid-1970s, before society came to recognize the rights of people with disabilities in a civil-rights context. The parents of people with developmental disabilities, particularly ARC (Association for Retarded Citizens), were frustrated by the failure of some local, federally funded service providers to adhere to the rights of the people they served. There were regular reports in the media of individuals subject to abuse and neglect at the hands of those entrusted with their care. Eventually, parents took their concerns to Congress.

The outcome: a new network of federally mandated and funded, independent, mostly nonprofit state-level agencies was created to act as an independent advocacy system. The governors were given the power to select the initial state P&A System to safeguard the rights of individuals with developmental disabilities. Once so designated, however, Congress gave the state P&A Systems significant protections from a governor trying to change the entity that served as the state P&A System, recognizing that such actions were more likely to result from the P&A doing its job (such as filing a lawsuit against the governor) rather than its failure to perform its legal advocacy responsibilities. The nationwide Protection & Advocacy System was born.

Congress recognized that many people with developmental disabilities were isolated and shut out from the rest of society and that some were without family members to assist them in advocating for their rights. To empower this nationwide network of primarily private, nonprofit, state P&A Systems, Congress gave them truly unique statutory powers, including access to public and private facilities and programs for people with developmental disabilities. This enabled the state P&As to intervene to protect the rights of people who had no one else to advocate for them.

Back in those early days, many P&A Systems focused on addressing the legal advocacy needs of individuals when the service system failed them. While a few P&As in the early years tackled systems-change litigation, most tried to handle a high volume of individual cases, because they knew that nobody else was likely to take these cases if they failed to do so. With a few exceptions, the P&As handled common legal rights issues, particularly special education, public benefits, access to services and, increasingly, abuse and neglect.

In Illinois, a new not-for-profit organization was established in 1978 to serve as the state P&A System, the Illinois Developmental Disabilities Advocacy Authority (IDDA). The organization hired advocates around the state, and many were given offices on the grounds of the staterun developmental centers, a common practice among state P&As during this period. IDDA directly operated the "non-legal advocacy" system and contracted with federally funded legal services for the poor for legal backup. Again, this distinction between legal and non-legal advocacy-and in some states actually separating these two roles-was more common in the 1970s. Today, most of us do not believe this distinction is meaningful and almost all state P&As have attorneys and advocates on staff.

In the late 1970s, a package of reform legislation was introduced here in Illinois. The Nursing Home Care Reform Act established a Bill of Rights for nursing home residents and authorized monetary awards when their rights were violated-$500 or treble damages, whichever was higher, and attorney's fees. This law provided private attorneys with a greater incentive to pursue cases for nursing home residents, many of whom were without resources to hire an attorney. Unfortunately, this provision was later significantly weakened.

In response to recommendations by the governor's commission to rewrite the state's mental health and developmental disabilities laws, additional legislation was enacted to strengthen individual rights. A revised state Mental Health and Developmental Disabilities Code was signed into law that included a Bill of Rights for service recipients, but without the monetary award or attorney's fees provisions.

To help ensure that service recipients could secure legal advocacy services and that systemic rights violations were addressed, the governor's commission recommended state funding for three separate but related entities: 1) a Legal Services program for people with developmental disabilities and mental illnesses; 2) a statewide network of local, citizen Human Rights Authorities to conduct investigations of systemic violations in facilities and issue recommendations and seek voluntary compliance; and 3) an Office of State Guardian to serve as guardian of last resort for those without family able or willing to serve in this capacity. The governor's commission recognized the importance of avoiding conflict of interest by keeping legal advocacy and guardianship apart. But in the end, the General Assembly decided against creating three separate entities and instead put these functions together in a single state agency, the new Guardianship and Advocacy Commission (GAC).

With the establishment of GAC, some in the governor's office and legislature suggested that IDDA be abolished and its function incorporated into the new, unified legal advocacy agency for people with disabilities to be located inside state government. But people with developmental disabilities and their families and some other advocates strongly opposed the elimination of the nonprofit IDDA, arguing that legal advocacy should be independent of service providers and of the state as well. As the fight over IDDA continued, its opponents alleged that the agency had not properly used its federal funds. In the end, the state legislature expressed its displeasure with IDDA's campaign for survival by including one dollar in the appropriations line item for its operation.

The law firm of Kirkland & Ellis, which represented IDDA pro bono, argued that GAC was a service provider and that placement of the P&A function within GAC would violate the independence from disability service provider requirement of Congress. The federal government sent a letter to the governor rejecting the state's proposal that GAC be designated as the state P&A. However, in the end, the republican governor and the republican federal administration made a deal: GAC could be designated as the state P&A, and the P&A program could operate within the agency as long as the P&A was controlled by a board of directors independent of the GAC commissioners.

Photo of Illinois P&A Document The governor followed through by designating GAC as the state P&A System in 1981 and establishing the Developmental Disabilities Protection and Advocacy Board to develop and direct its policies and procedures. GAC developed a plan for the P&A to have one advocate in various parts of the state who would be housed in the local GAC office. There was no plan for any attorneys. The governor appointed five members to direct the new board and a national search was launched for an executive director through Central Management Services, which ultimately resulted in my selection.

The GAC's executive director participated in my first interview for this position -so much for operating independently. The second interview was only with the board members, whom I told that if I were hired I would make it my priority to return the P&A to the private, nonprofit sector. In addition, although IDDA's attorneys concluded that Congressional history on the guardianship issue was not strong enough to use as a basis of a legal challenge, its board and supporters continued to agitate for maintaining an independent P&A.

To make a long story short, in 1983 the federal government finally promulgated rules that clarified that guardianship was a service; therefore, an agency that operated a guardianship function could not be the designated P&A. This regulation had an impact on only the Illinois arrangement. In the end, the administration made the decision to "privatize" the state P&A. We suggested that GAC's legal advocacy program could be consolidated with the P&A nonprofit, but this idea was rejected.

The governor had the Illinois Council on Developmental Disabilities put the project out to bid, including public hearings. We set up a new private nonprofit, Protection and Advocacy Inc., and proposed to transition the state program and its staff to it. We were successful, and Protection & Advocacy, Inc. was designated as the state P&A on July 1, 1985. (We later changed our name to Equip for Equality.) The three-year process of privatizing the state P&A was extraordinarily complicated and political, but that is another story. IDDA ultimately dissolved itself and passed the small amount of its remaining assets on to us.

I was attracted to the P&A position because I felt that this unique creature of Congress had so much potential to change peoples' lives and to promote societal changes. By responding to requests for assistance from real people, we would be in an excellent position to understand first-hand the barriers individuals faced in their efforts to live their own lives in the community. And by incorporating a public policy function into the organization, we would be able to use what we learned from our partnership with people with disabilities and their families to pursue public policy reforms. And once reforms were enacted, we would be able to see whether they resulted in changes in the demand for advocacy assistance.

In the early days, we had six advocates around the state, one attorney and Dolly Hallstrom, who lead our state legislative efforts. I also spent much of my time in the legislative process. Today, I still believe the state P&A, as a result of handling thousands of individual requests for legal advocacy services, is uniquely qualified to partner with people with disabilities and their families in their quest for equality.

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