By GREGG LIPPA and JOHN POERTNER

Advocacy for the forgotten

A person with developmental disabilities should have a guardian who is an advocate as well; who not only protects and gives direction to the ward, but also acts as counselor and friend. Can this happen when the state becomes guardian? Who acts to insure that the disabled person's rights are protected? How free is an individual to ask for an advocate from an agency which is also his guardian and has the right to limit his freedom?

AN ADVOCATE is one who pleads the cause of another, specifically before a tribunal or judicial court but in a broader sense, before society at large. Advocacy has a long tradition in the U.S. as a means of calling attention to the denial of rights and as a catalyst for social change. Jane Addams, founder of Hull House in the late 19th century, was an advocate for impoverished immigrants in Chicago. During the 1960s a number of groups and individuals emerged as advocates for the rights of blacks and other minorities. The 1970s saw the women's movement and the emergence of Ralph Nader as consumer advocate.

More recently, however, many Americans have become aware of another oppressed group — those with developmental disabilities. Many persons with developmental disabilities live in institutions. People in institutions tend to lose their rights, to be treated as something less than human. Even now, when disabled persons are leaving the institutions, they often carry an unwarranted stigma into the community.

Advocacy began to enter into public mental health policy during the 1970s. At both the federal and state level, policy was established through legislation to reiterate — and protect — the rights of these often neglected persons. In 1975 advocacy for persons with developmental disabilities became federal law, and following the lead of the federal government, many states passed legislation with similar intent. In Illinois, this led to the creation of the Illinois Developmental Disabilities Advocacy Authority. In 1978, again paralleling federal developments, Illinois revised its Mental Health Code which led to the creation of the Guardianship and Advocacy Commission to serve both the mentally ill and the developmentally disabled.

These agencies are now faced with similar mandates and no mechanism for pooling their resources. Advocacy for persons with developmental disabilities has thus become a battleground for a territorial struggle between the two agencies. While conflicts such as these are not unique, it is important to resolve this one now. With federal advocacy legislation for the mentally ill and the developmentally disabled already on the books, similar legislation is in the offing for other groups, including juveniles, the elderly and prisoners. Inevitably, the solution to the conflict over advocacy for persons with developmental disabilities will have a profound effect on systems designed to serve other groups.

Meanwhile, both the Illinois Developmental Disabilities Advocacy Authority and the Guardianship and Advocacy Commission, as well as many nongovernmental organizations, face cuts in social service spending which may mean an end to one or both agencies and a setback for the advocacy movement in general. That makes the need for finding the best solution to the problem even more urgent. Division, duplication and turf struggles are not what the advocacy movement needs at this moment in its history.

Definition of DD

Persons with developmental disabilities (DD) are not mentally ill, but they do have mental and/or physical disabilities, often arising at birth, which interfere with their normal daily living. Of the estimated 600,000 persons in Illinois with DD, over 6,000 live in state-run institutions and thousands more in private residential facilities, Ten percent of Illinois' 2.4 million school children (K-12) are in special education classes. Illinois citizens pay nearly $1 billion per year to feed, house and educate these individuals.

"Developmental disability" has been defined and redefined during the last decade. Back in the days when people were routinely locked away in institutions, the terms were simpler. As recently as 100 years ago, these institutionalized persons were "criminals, prostitutes and imbeciles." Persons in the first two categories were considered to have some control over their behavior; those in the third were "not in control of their behavior." Today we call this third group "mentally retarded." Over time, this group was separated from the other two, and social services for the mentally retarded became more charitable, although their living conditions remained abominable. Today, a person with DD is defined as one who manifests a "severe, chronic disability" before age 22 which (1) results in a "substantial functional limitation" in various essential skills (such as the ability to communicate, care for oneself, hold down a job and move around) and (2) is "likely to continue indefinitely." The new definition bears little resemblance to early terminology.

Despite these refinements in definitions, public attitudes towards individuals with DD have been slow to change. Those early planners were too quick to label people and lock them up. Today, the general public is too quick to ostracize and stigmatize, if not to institutionalize.

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Fear and avoidance of the developmentally disabled are still common reactions. In Illinois, neighbors in communities have successfully blocked the opening of no less than 14 group homes or community residential facilities for the developmentally disabled. And, as the following examples suggest, society is — on all fronts — a long way from guaranteeing the rights of its many fellow citizens who have developmental disabilities. (These examples are not case histories but are composites of actual events or situations in Illinois.)

Brenda B. is 15 years old. She is mentally retarded and paralyzed from the waist down. She gets around in a wheelchair and lives in a group home in Mainstreet, Illinois. Because she is a citizen of Illinois and disabled, she has certain rights which are defined by law, including the right to an appropriate education, appropriate housing and access to public places, as well as the right to make her own decisions whenever possible.

Brenda goes to school at a building on the outskirts of town with 35 other students with mental retardation and/or other disabilities. She is denied the opportunity to learn from and with "normal children," and they are denied the opportunity to learn from Brenda. Some of Brenda's classmates live with their parents, but most of them live in the institution next to the "special school." They rarely see their parents or anyone who does not work or live at the institution. Brenda has commented that "they always seem kinda down."

Although she likes to go downtown to shop and "look around," she must always have someone with her when she crosses the street. She says, "I always feel like they don't really want to come with me, but they do it anyway because they have to." Even though she is capable of taking care of herself, she is unable to overcome the barriers built into her hometown. "If they fixed the curbs," she says, "it would be better, but I still couldn't get into most of the stores because of the steps."

Tina is also in the "special school" near the institution. She is 19 years old and has a "plenary" guardian, which means that she cannot make any decisions for herself. Some of Tina's friends have no guardian, and they tease Tina about being "like a little kid." There are things which Tina can do for herself, but she does not have the freedom to make even those decisions she is capable of making. If she had a limited guardian, as provided for by the state's revised guardianship law, she could make some decisions for herself.

Dick is a disabled student who needs special attention in school. Unlike Brenda and Tina, he has all of his classes in a regular classroom. This policy, known as "mainstreaming," is mandated by federal law and seeks to reduce whenever possible the separation of disabled and nondisabled students. But because he is not as quick to learn as most of the other students, Dick cannot keep up in some areas.

The disabled also have guaranteed rights under law — advocacy should insure them

Because of cutbacks in funding, the school district does not have an adequate mainstreaming program, and Dick is not getting the education he needs.

Brenda, Dick and Tina have rights, guaranteed by state and federal law. These laws bring us one step closer to a society in which persons with disabilities can function maximally and retain their dignity. But the laws are not the whole solution. Realizing those rights in their daily living experience is something for which many disabled persons are still waiting. Implementation of the law is a long and difficult process. As a result, advocacy systems have been developed to facilitate implementation — to make appropriate education and housing a reality and our environment accessible to persons with mobility impairments.

Federal protection for persons with DD began in the 1960s and expanded in the 1970s. Protection of persons with handicaps from discriminations was included in Section 504 of the federal Rehabilitation Act of 1973 (Public Law 93-112): "No otherwise qualified handicapped individual in the United States . . . shall, solely by reason of his handicap, be excluded from participation in, denied benefits of, or subjected to discrimination under any program or activity receiving federal financial assistance."

In 1975, the Developmentally Disabled Assistance and Bill of Rights Act (P.L. 94-103) mandated "the development and implementation in each state of a system to protect and advocate the rights of developmentally disabled persons." The law requires that each state have an advocacy system which is independent of agencies providing services to persons with DD and able to carry out a variety of advocacy activities on a statewide basis. The system had to be in place by October 1, 1977, or the state risked losing federal developmental disabilities funds. The governor was to designate the "protection and advocacy agency" to culminate the planning process.

The Governor's Planning Council on Developmental Disabilities (DD Council) plans and coordinates services for persons with DD in order to best meet federal requirements. Preparation of Illinois' protection and advocacy system became the responsibility of the DD Council via P.L. 94-103. A 12-member state steering committee representing the DD community was formed in 1976 to organize a two-day conference on "Advocacy and the Developmentally Disabled." The committee felt that "failure to actively seek out opinions, ideas and concerns of the people who are going to be affected by the results of the planning" was the "frequent and sometimes fatal fault of many planning efforts." This is especially relevant to the issue of DD because of the political strength of consumer and parent groups as well as service providers. Failure to adequately provide for the concerns and interests of each of these groups would likely result in failure for any advocacy efforts.

Committees and reports

Participants in the conference, including consumers, planners and providers of services, helped design the proposed protection and advocacy system. Drawn up by the DD Council, the Plan to Protect and Advocate the Rights of the Developmentally Disabled was approved by Gov. James R. Thompson and funded by approximately $100,000 in federal funds and

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$500,000 from the state. As recommended in the plan, a nonprofit corporation, the Illinois Developmental Disabilities Advocacy Authority (IDDAA), was created in 1977. Its activities that year included public awareness and training; information and referral; rights training; facilitation of cooperation and communication among other relevant agencies; legislative and regulatory participation; and provision of technical assistance to local advocacy groups. The IDDAA administered seven advocacy projects with over 30 advocates, including six attorneys, in 20 offices around the state. It was the most comprehensive protection and advocacy system in the U.S.

Meanwhile, in 1973, Gov. Daniel Walker had created the Governor's Commission for Revision of the Mental Health Code. After four years of intensive efforts the commission, headed by Judge Joseph Schneider, submitted its final report to Gov. Thompson. The comprehensive report analyzed the mental health system and proposed legislation for the reform of the Mental Health Code and related state functions. There was much concern that the recommendations of a commission formed by Gov. Walker and reporting to Gov. Thompson would be shelved. Legislative efforts in behalf of code revision were intense, however, and then Sen. Richard M. Daley (D., Chicago) steered four interrelated pieces of legislation through the General Assembly. They were signed into law by Gov. Thompson in 1978 (see Illinois Issues, July 1978, p. 16). The legislation revised the Mental Health Code; revised the Probate Act regarding guardianship proceedings; created the Mental Health and Developmental Disabilities Confidentiality Act; and created the Guardianship and Mental Health Advocacy Commission. The commission was the state advocacy agency for the mentally ill; its responsibilities did not include persons with DD. The federal law mandating advocacy for the developmentally disabled was seen as adequate for this group.

The Mental Health Code revisions took effect on January 1, 1979, but legislative action to alter the Guardianship and Mental Health Advocacy Commission began even before that. The new definition of developmental disability embodied in federal law seemed to blur the distinction between developmental disability and mental illness. The 1978 amendments to the federal Rehabilitation Act authorized a new advocacy program for severely handicapped individuals, and many thought it was not reasonable for formal state policy to exclude DD. Therefore, early in 1979, advocacy for persons with DD was added to the responsibilities of the Guardianship and Mental Health Advocacy Commission, and its name was changed to the Guardianship and Advocacy Commission (GAC).

During fiscal 1979, the GAC was appropriated $1.5 million to operate three components: the Human Rights Authority, the Office of the State Guardian and the Legal Advocacy Service. The Human Rights Authority investigates allegations of human rights violations at residential mental health and DD facilities, both public and private. The Office of the State Guardian is "guardian of last resort" for adults in need. The Legal Advocacy Service provides direct case advocacy, using both lawyers and nonlawyers. Meanwhile, IDDAA continues to provide services to the developmentally disabled under the federal mandate but with much lower funding than it had in 1977.

Illinois now has two systems (the IDDAA and the GAC) to protect the rights of persons with DD. In addition the GAC performs functions which many see as conflicting: guardianship and advocacy.

Federal law demands that advocacy services be "independent" of any person or group providing services to persons with DD. The state, however, has set up a situation where the GAC provides both advocacy and guardianship services and is operating with a board which includes a hospital psychiatrist, a hospital president, the administrator of a facility for the severely disabled, two board members from an agency which provides services to the retarded, the director of an agency which funds services for the disabled and a past president of the Illinois Mental Health Association. These board members are expected to keep tabs on their colleague — and themselves — in their role as advocate. The difficulty of their task is compounded by the issues that arise in a system in which advocacy and guardianship overlap. A few example should suggest the complexity of the situation. Once again, these are not case histories but composite stories similar to actual situations.

Jim S. is a moderately retarded young man living at an Illinois state institution for the developmentally disabled. One day a nurse accidentally tripped Jim as he was walking toward his room. Jim thought the move was deliberate and began to yell at the nurse for making fun of him. Soon Jim was given a shot by the doctor on staff to put him out, and he was taken to his room. Jim had no history of violence before this and even now had not become dangerous. Yet when his state-appointed guardian was informed of the incident, she asked what could be done to stop this from happening again. She was told that Jim should be put on a large dose of behavior-controlling medication which would make him "much more passive." The guardian agreed. When Jim found out about the plans to drug him heavily and daily, he was scared. He had seen what had happened to several of his friends who were put on such medication. Most of them could not talk or think straight anymore. Did Jim's guardian agree to the medication because it was the appropriate thing to do for Jim? Was agreement a result of the guardian being in some sense a part of the service delivery system? Was the agreement due to the guardian being overworked and not able to visit Jim enough to get a full understanding of the situation?

The GAC is one of several state agencies operating under more than one mandate. In each case one mandate dominates the others. For example, a strong mandate has been imposed on the Department of Children and Family Services (DCFS) under the Child Abuse and Neglect Reporting Act. This tends to overshadow other DCFS mandates such as development

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of a range of child welfare services. Similarly, guardianship is a stronger mandate for the GAC than advocacy. In both agencies, the area of stronger mandate receives the greater share of resources. Jim's request for an advocate may go unheeded because with limited resources there is none available; however, if GAC is appointed guardian by the court, then it must carry out the guardianship order.

Ron R. is a mildly retarded man, age 28, living in a sheltered care home. Ron has been dating Nancy for over three years and now they want to get married. Nancy is also mildly retarded and lives with her mother who, after some convincing, has agreed to the marriage. Ron is a ward of the state and must have his guardian's permission in order to marry. His state-appointed guardian is unwilling to give permission for fear that Ron will be making a mistake by not marrying someone who can "take care of him." Ron feels that he can take care of himself and that he and his wife can take care of each other. Should there be an advocate to mediate this dispute? And if there should, will an advocate be available to Ron?

In the capacity of guardian, a person has a greater or lesser degree of control over the ward depending on the nature of the guardianship order. Should the guardian then have the final word if there is a disagreement with the ward? What about cases in which the ward is severely disabled and unable to express himself?

When people lose all or some of their rights through the guardianship process, the Illinois Probate Act suggests representation of those people by counsel. The writers of the Probate Act saw that the process needs checks and balances so that the state does not become overly intrusive. To avoid this intrusiveness, persons for whom the state becomes guardian need an independent advocate to assure protection of their rights.

There is currently discussion at the state level to resolve these conflicts. This is a prime time to correct these flaws before advocacy is broadened to include additional groups and before existing structures become so entrenched that they cannot easily be changed. The experience of some other states suggests alternatives for Illinois to consider.

In Minnesota, the advocacy agency operates out of the Minneapolis Legal Aid Society. Funding comes from the National Legal Services Corporation, a quasi-public, not-for-profit agency which represents clients, trains advocates and is involved in the legislative and regulatory process. This structure provides needed independence from service providers and state guardians as prescribed by law. However, funding is in doubt because the Legal Services Corporation is one of the agencies targeted for elimination by the Reagan Administration.

Other states' solutions

In New Jersey, advocacy for persons with DD was placed within the already existing Office of the Public Advocate. Funding comes through the state's budget process. By statute, the Office of Public Advocate is independent of all other governmental departments and can pursue legal remedies against all other departments of the state. Because the office is in the executive branch of government, however, it is under direct control of the governor, which decreases its independence. To insure independence, an advocacy commission is perhaps a better alternative than an executive agency.

The Ohio Legal Rights Service is a public agency under the jurisdiction of the chief justice of the Ohio Supreme Court. Funding for this statutory agency comes through the state's budgeting process and is supplemented with federal funds. Placement in the judicial branch provides independence as well as a check and balance to executive power. However, the Ohio system tends to confine its activities to class action litigation with little attention given to individual case advocacy or training. Although legal action is important, some attention must be given to advocacy for individuals and administrative remedies which can improve living conditions right away.

A year ago, the South Carolina Protection and Advocacy System for the Handicapped, Inc. was designated the state's protection and advocacy agency. Created by state statute to be governed by a 12-member board of directors appointed by the governor, the agency pursues administrative and legal remedies to resolve individual complaints for persons with DD and those defined as "handicapped" under state law. The system may interview any service providers and/or inspect any records relevant to an individual case. Funding comes from the state appropriation supplemented by federal protection and advocacy money.

South Carolina's advocacy system is a potential model for a solution to the present conflict in Illinois. The South Carolina agency has both independence and accountability. It is able to pursue legal and administrative remedies and has authority to obtain access to records necessary for the investigation of individual complaints. Access to records is often a problem for advocates working on individual cases.

The key theme is: advocacy must be independent of the providers of services; it must also be independent, yet accountable to government, consumer groups and consumers. Action is required now, before the conflicting mandates under which the GAC operates become an accepted fact of state government politics. If no changes are made, the dual role of the GAC will become increasingly legitimized in spite of its inherent conflicts. Failure to coordinate advocacy services could lead to disillusionment with the advocacy concept and to a general lack of concern for the needs of the consumers.

At the national level, the Mental Health Systems Act (P.L. 96-398), signed into law in October 1980, provides for an optional mental health protection and advocacy program. Federal funds are available for such programs, and Illinois could tap these funds if it puts together an adequate advocacy system.

Other groups who need advocacy include those residing in institutions, foster homes, nursing homes, prisons — places where people lose all or some of their rights or are unable to exercise them easily and effectively. The experience of the protection and advocacy programs now in place will affect the future of these groups.

Gregg Lippa, a graduate student at Sangamon State University and a public information specialist at the Illinois Developmental Disabilities Advocacy Authority, co-authored this article as part of his work for the master's degree in the Individual Options Program. John Poertner is an assistant professor with the Child, Family and Community Services Program at Sangamon State University.

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