Forty years ago I was sworn in to become a newly minted attorney in Ohio, with the sole ambition of doing battle for the rights of people with mental disabilities. There have since been many fights on many fronts – the only constant has been continual change and a realization that you can never predict where your efforts will lead. Forty years ago it was inconceivable that institutional care would be largely replaced by a system which gave individuals funding with the freedom to pick services and providers while living in the community. Here are some of the highlights:
A day of work in 1973 for the Legal Aid Society in Cleveland began by going to my office in the Cleveland Psychiatric Institute, connected to Metro General Hospital. My law school diploma and bar certificate were on the wall to make sure that nobody confused me with the doctors, other staff or patients. Legal Aid’s Mental Health Unit had lawyers in each of the four psychiatric hospitals; we represented indigent patients in involuntary commitment hearings since at that time, there was no right to appointed counsel for patients who were indigent. Hearings in those days came in two stages: a preliminary hearing and final hearing. Once there was a final hearing, the patient was often automatically declared incompetent and not entitled to any further judicial review. The average length of stay for long-term patients was over 13 years.
In 1974, the Mental Health Unit succeeded in establishing that persons facing involuntary commitment were entitled to have a lawyer, the same way an accused criminal facing confinement would. If the person was indigent, the court would pay for the lawyer. Two years later, Ohio’s legislature passed a comprehensive reform of the commitment law which ensured that persons facing involuntary commitment had a full range of civil rights and, once committed, on-going judicial review.
Today, the average stay for persons in psychiatric hospitals is measured in weeks, not years, thanks to the availability of out-patient behavioral health therapy, partial hospitalization programs, day treatment facilities, and the like.
Before the early 1970’s, families with children who were disabled were most often told to put their children in state institutions “with their own kind” so the children could be properly cared for. State institutions were founded with the best of intentions as alternatives to the jails and prisons where people with mental difficulties often found themselves. By the mid to late 20th century, however, these institutions were often overcrowded, dangerous and isolated. The first cases which challenged the deplorable conditions were brought in 1970. By the mid-1970’s, Legal Aid’s Mental Health Unit initiated actions against Apple Creek State Institute, which housed people with mental retardation (as they were referred to at that time), and Hawthornden State Hospital, a long-term psychiatric hospital in Northfield Ohio. The trial against Hawthornden took place in Akron and lasted seven weeks, coinciding with the worst winter and highest snowfall on record. Both actions resulted in extensive reforms and downsizing. Apple Creek was eventually closed in 2006.
These actions were part of a major societal trend away from institutional care in our country. Today the population in state institutions is a fraction of what it used to be. The prisons, however, have resumed their place as the largest providers of residential psychiatric services.
Early efforts to establish group homes and other community-based living facilities met with nearly impenetrable opposition from city administrations and neighbors. The early years yielded results only after months of persuasion and lobbying. The establishment of Elbur House in Lakewood was an early success which showed the gradual acceptance of people with disabilities in the community. In 1988, Congress passed amendments to the Fair Housing Act which prohibited discrimination based on disability. These amendments made it unlawful for communities to exclude group living facilities for people with disabilities.
Community-based homes spread quickly after the 1988 amendments. Today, in Cuyahoga County, 1,600 individuals live in a home of their choosing in 39 communities. The expansion of services has led to an expansion in demand; waiting lists are counted in thousands.
As a law student at the University of Pennsylvania in 1971, I was appointed to the legal committee of the Pennsylvania Association for Retarded Children (PARC) which was plaintiff in the first right to education case in the country. The parents prevailed in this suit, which focused only on children with intellectual disabilities. By 1975, Congress passed the first comprehensive legislation which established the right of all children to a free, appropriate public education, regardless of the nature of their disability.. Working in this area since its inception has been especially rewarding, since education so often plays such a key part in shaping a young person’s future. Enforcing the law remains a challenge in many cases, but there are few experiences more satisfying than watching a young man with autism graduate and receive a standing ovation from his peers because he is going to college.
The influence of Medicaid on services for people with disabilities began in the late 1980’s in Ohio. Gradually, the system of Federal support grew to a point where it is the most important funding source for those unable to private-pay, especially for community services. Almost from the time it was founded, our Firm has worked to help people access and maintain Medicaid benefits. Medicaid-related issues remain central to the Firm’s work to this day. With the rise of Medicaid Waivers, individuals with disabilities and elder persons are able to choose a provider who meets their needs and wants; these individuals can choose where they live, and how the services are to be delivered. Medicaid program rules change constantly, and the so-called Medicaid expansion will make benefits available to people who could never have qualified before.
Predicting what will happen over the next forty years is impossible, except for the certainty of change and the steadiness of our commitment to working with people with disabilities, the elderly, and their families.