Parallels In Time
A History of Developmental Disabilities

How People Come to Be Involved in Court Cases – Two Stories

There are many ways that people with disabilities and their families come to be involved in court cases to secure a better future, quality services, and the end to abuse and neglect. There are two stories about a small group of parents in Oklahoma and a band of determined People First members in Tennessee who set out to make a difference.

Oklahoma

In 1985, the Homeward Bound class action suit in Oklahoma was launched against Oklahoma state agencies and The Hissom Memorial Center, a state-owned-and-operated institution. The suit alleged class members residing at Hissom were being abused, neglected, and unnecessarily restrained; denied adequate food, clothing, medical care, and habilitative services; and discriminated against based upon the severity of their disabilities. Homeward Bound sought placement in the least-separate, most-integrated community setting appropriate to each class member's needs.

A group of eight families in eastern Oklahoma all had children in Hissom Memorial. All of their children were in a program for deaf-blind children funded by the U.S. Department of Education. The children learned to walk. They learned other skills. Then the program was defunded and there were no alternatives. The parents were left, however, with higher expectations of their children's potential than the institution acknowledged. They looked for model community programs. They went next door to Nebraska and saw programs that matched their expectations. It became their mission to have such programs in Oklahoma for their children.

In 1981, the families formed Homeward Bound Inc. and began to lobby for family support services and state-supported community options for their children. That was the same year that the Home and Community-Based Services program was established allowing states to use federal funds to create alternatives to institutional care. It was also the year that "The Group Home program" was established by Donna Nigh, then Oklahoma's first lady, and became the first community residential option for adults with mental retardation in Oklahoma.

The Homeward Bound parents embarked on a two year search for lawyers who could help. They looked all over the country. Some were too busy. Tom Nerney was involved with situations in Oklahoma and referred the families to the Public Interest Law Center of Philadelphia (PILCOP). Tim Cook and Judith Gran from PILCOP went to Tulsa in April 1985. They met with the families in the traditional venue where all such plots are developed -- one of their living rooms. They talked about what it would be like to launch a suit.

The families were clear – "Let's do it". The complaint was filed on May 2, 1985. The parties entered into a Consent Decree requiring deinstitutionalization of class members and provision of state-sponsored community services and supports. The court order required the closure of the Hissom Center. The district court's active supervision of the Decree ended in 2004 after a finding of substantial compliance. By 2001, about 950 of the 2,954 Oklahomans receiving support through the Home and Community Based Waiver were members of the Hissom class.

Tennessee

In 1989, the Tennessee Developmental Disabilities Council and the Division of Mental Retardation established an office for People First. That same year, People First of Tennessee met with the residents of Arlington Developmental Center to talk about People First. The residents voted to join People First and started attending meetings of the Memphis chapter.

In 1991, the U.S. Department of Justice (DOJ) investigated complaints about Arlington. The complaints came from parents and former staff members. When the DOJ released the Letter of Findings, People First started talking to other organizations and state government about what they were going to do about Arlington. They were not satisfied with the answers they got. Basically, people were saying that the institutions were good. They might need improvement, but they were good. It might be nice if people were in the community, but the institutions were good, too. All of this despite the Department of Justice report which indicated the institutions were far from good.

People First of Tennessee had no allies. Nobody in Tennessee agreed with them. They did have friends elsewhere. The staff advisor to People First of Tennessee met with Mark Friedman from Speaking for Ourselves in Pennsylvania. Mark knew that Judith Gran over in the Public Interest Law Center had been reading up on Tennessee to get background on an expert witness. Mark got Judy and the People First advisor together in Philadelphia.

Judith Gran then went to Tennessee to meet with People First. They already had a local lawyer who had a small firm and was quite interested in a co-counsel. They were joined by yet another lawyer (Edward G. Connette) who had been involved in a North Carolina case. They all met with the board of People First. They described what happens and what it means to file a suit.

Judith Gran remembers that meeting as a most moving experience. The People First members talked about what they wanted in the community, what they were entitled to, and what was important. What they described was quite visionary. It was perfectly in line with the values of self determination. For Judy, it was one of the most authentic experiences she had witnessed. It was rooted in a strong understanding of the struggle for rights.

People First members in Tennessee were very conscious of the historical connections between their struggle and the civil rights struggle. Members had studied and learned about that movement. People First of Tennessee had a grant from Partners in Policymaking that allowed them to meet at the Highlander Center (a center of courage and learning in Tennessee that brings people together to learn from one another) to learn about the connections between civil rights and disability rights. Judy remembers sharing a hotel room with a People First leader. Judy was reading some legal papers, and her roommate was reading about the life of Rosa Parks.

Based on that understanding of what it takes and their own decision making process, the 30 member board of People First voted to authorize the law suit. It became the first case where People First was the plaintiff. All of the "next friends" of the people in Arlington were People First leaders.

In a 1998 interview with Mouth magazine, Judy described a bit of detective work she did before the suit was filed.

Before we filed the case called People First of Tennessee v. Arlington, I went into that institution, pretending to be a visiting family member.

The institution staff recognized all the People First members, and they wouldn't let them come to the institution or talk to anybody. They were even returning mail sent from People First to the members who were inside the institution.

One Sunday afternoon during visiting hours I just walked in and hung out, acting as though I was just visiting family. Nobody paid that much attention to me. I went all over the institution, to all the different living units, and I met people. That's how I met one of the named plaintiffs there, during that visit.

One of the reasons for Judy's detective work was to get names of people who might enter into the suit. Her visit to Arlington meant she could meet some people and get some names. Some people were confined to their beds and Judy got their names from the labels on their beds. The lawyers took those names to Probate Court, got the individuals' files and the names of their parents or guardians, and eventually tracked down enough people who were interested in the suit to proceed.

But the case brought by People First faced delay after delay. There were plans afoot in the Tennessee Department of Mental Health/Mental Retardation to cut off funding to People First. When People First learned of it, they threatened retaliation against the Department. In 1997 the Parent-Guardian Association of Arlington Developmental Center( affiliated with Voice of the Retarded) filed a suit against People First of Tennessee, trying to stop the momentum to close the institutions of Tennessee. The parent association argued

For those suffering severe disability, specialized services, constant monitoring, and ready availability of medical attention are mandatory. Some parties, including the parents and guardians of the disabled individuals, submit that an institution is a necessary option for the provision of such continuous care. "Next friends" and an advocacy group, plaintiffs herein [People First of Tennessee], favor placement of all disabled in the community and elimination of the institutional service option.

People First of Tennessee was the first group to file suit against Arlington, but the delays meant that the Department of Justice's complaint went ahead first. Judy Gran described the impact of that case in Mouth magazine.

When the Department of Justice filed its case against Arlington, they filed it as a fix-up case, about improving services at the institution as opposed to getting people out. That has been an issue with DOJ from the beginning, from when they first started doing CRIPA (Civil Rights of Institutionalized Persons) cases.

The DOJ case did a very thorough job of trying their case. There are good lawyers at the DOJ, very skilled lawyers. And they had good experts who presented compelling testimony which had a powerful impact on the Court.

But it was all in the context of fixing up the institution, making it a better place to live. The case was not as helpful it could have been to People First of Tennessee. We did not believe that the institution could be fixed.

And apparently it can't. The court orders, the consent decree in which the state promised to fix up the institution, have been in effect since September 1994, and they've been continuously and severely out of compliance with that decree from the start.

I think all the parties have seen that it's not realistic to expect this place to ever deliver quality services. But it took a long time to demonstrate that because DOJ didn't present its own case that way.

But the Arlington case opened the flood gates in Tennessee. In 1995, People First filed another complaint against another institution – the Clover Bottom Center. By November 15, 1996, the Department had filed a complaint and settlement agreement in United States v. Tennessee (M.D. Tenn.) concerning the conditions of care in four institutions: Clover Bottom Developmental Center and Harold Jordan Center in Nashville; Greene Valley Developmental Center in Greeneville; and Nat T. Winston Developmental Center in Bolivar. The United States' case was consolidated the class action lawsuit filed by People First of Tennessee against the Clover Bottom Developmental Center. The settlement agreement was signed by the class plaintiffs, the State of Tennessee, and the United States.

The agreement required a major system change in the way Tennessee provides services for persons with significant developmental disabilities. It required the state to:

• Provide community services for all institutional residents whose interdisciplinary teams or independent evaluators recommend community placement.
• Develop and implement a comprehensive, state-wide plan to create the community services in local communities needed by former institutional residents. Consumers, families, advocates and service providers will help develop the plan.
• Assure that all school age residents receive an appropriate education in their local school districts.
• Provide improved services for people as long as they reside at the institutions.

Is It Worth It?

In 1997, Mouth magazine interviewed Frances Hamblin and Ruthie May Beckwith of People First of Tennessee by phone.

We asked another question. Can the people of any state do what People First of Tennessee has done? Our speaker phone jumped on its stand when the People Firsters we interviewed gave their emphatic "YES!"

What guidance would they offer to anyone who tries? "There are two things, really. One: Whoever does it has to be connected to the people on the inside. You can't speak for them. People must be involved in their own liberation.

"And two: This has been a very long fight. You have to have the will to see it through. Period." — Ruthie May Beckwith.