PARC, Pennhurst and the most under utilized disabilities resource in Pennsylvania

In a post I did yesterday, I highlighted a bit of history from the Disability Rights movement and how we got to where we are today. I didn’t go into much detail about Pennsylvania, Pennhurst and the role that Pennsylvania parents had on the movement. Families in Pennsylvania really played a strong and crucial role in some of the legislation being passed. Many parents before us were trailblazers–and we owe it to them to know the history and to continue where they left off. This will give you a brief overview of Pennhurst, the PARC decree and the Right to Education Task Force, which came out of the PARC decree and I believe is one of the most under utilized resources that parents in Pennsylvania have access to.

As a side note, the attorney for both of these cases, Thomas Gilhool, is now mostly retired but still occasionally does speaking engagements. Keep your eye out–because if you see him speaking some place, you really should go if you can. There also is a series of interviews available online, where he talks about his work.

Pennhurst History and the Disability Rights Movement

Yesterday I talked about Geraldo Rivera and his TV expose of Willowbrook, an institution in New York. Here in Pennsylvania we had an equally horrendous institution named Pennhurst State School. A familiar media name in the Philadelphia area is Bill Baldini. He did an expose on Pennhurst several years prior to Geraldo’s show, but for whatever reason, his did not get as much attention as Geraldo’s. You can Google it, it is on YouTube but like I said yesterday, I find it unwatchable. If you would watch it or have any inkling of the horrendous treatment those people received while at Pennhurst, you would understand why the Pennhurst asylum-themed Haunted House is offensive to many. Since Pennhurst is local to us here, you can still find some folks in our area who actually lived there and still remember the horrors.

Anyway, in addition the television exposure of the conditions, there is also a famous law case “Halderman v. Pennhurst” which helped move along the disability rights movement. In 1974 a class action lawsuit was filed in the U. S. District Court for the Eastern District of Pennsylvania on behalf of former and current residents of Pennhurst against the institution, its superintendents, and state officials responsible for Pennhurst’s operation. The plaintiffs argued that the institutionalization of the residents violated their constitutional rights under the 1st, 8th, 9th and 14th Amendments, as well as under federal civil rights laws and the Pennsylvania Mental Health and Mental Retardation Act of 1966. They sought damages and equitable relief, including the closing of Pennhurst, and provision of education, training, and care in community settings. Long story short…they won! And, the judge found that people with disabilities should be guaranteed three things:

1. Right To Habilitation
2. Right to be free from harm
3. Right to non-discriminatory habilitation

While this was a precedent setting victory for people with disabilities, the nightmare at Pennhurst was still more than a decade from being over. As late as the mid-1980s, Pennhurst employees were arrested for beating patients, abusing patients and arranging fights between patients. Pennhurst finally closed in 1987, which is pretty recent in the big scheme of things. The SCOTUS actually overturned the decision based on 11th Amendment principles and a settlement agreement was reached. Halderman v. Pennhurst however, was one of the main catalysts for the beginning of de-institutionalization for people with disabilities.

PARC v. Commonwealth of Pennsylvania

At around the same time as Halderman v. Pennhurst was making it’s way through the courts, so was another now famous Pennsylvania case–PARC v. Pennsylvania. PARC was first but they did overlap some. When this case started, Pennsylvania had a law on the books that said that if a child “did not have the mental age of 5 years” by the time they were to enroll in first grade or age 8, they could be legally excluded from school. A class action lawsuit on behalf of PARC (Pennsylvania Association of Retarded Citizens) and 14 families who had children who were excluded from school was filed in 1971. It was the first “right to education” lawsuit in the country and was filed in Federal District Court.

PARC was set to be quickly settled out of court in what is known as the “PARC Decree.” What is really important about the PARC Consent Decree is that it basically is the format, the wording and the structure for IDEA 1975. Yes, that’s right–the main meat and potatoes of IDEA came from Pennsylvania and it was Pennsylvania special needs parents who helped make this happen. In 1975, the consent decree in PARC was codified on a national level as the Education for All Handicapped Children Act, now known as the Individuals with Disabilities Education Act. After PARC there was Mills v. Board of Education which expanded the rights of PARC.

The most under-utilized parent resource in Pennsylvania

I can’t tell you how many parents that I come into contact with, who have children with special needs and IEPs of course. And so often, they say to me “Why don’t parents know all this stuff? Why don’t we form a group? Why don’t we have a parent-led group….” and I just want to yell, “NOooooooooooooo!”

We don’t need another group. The PARC Decree has given us such a group!

The PARC decree provided for the establishment of a state task force and 29 local task forces (one in each intermediate unit) whose primary purpose is to insure that the intent and spirit of the Right to Education Consent Agreement is carried out throughout the Commonwealth. It is to be parent led. The decree explicitly states that each task force must be 51% Parents. The Task Forces have a horrible name, I mean, c’mon, task force? Right to Education Local Task Force, blech. No wonder no one joins! But they have quite a bit of power.

Right to Education Task Force Duties and Responsibilities, per the decree

• 6.3.1 Make recommendations that assist in improving, strengthening, expanding and monitoring programs and services for persons covered under MR services.
• 6.3.2 Advocates for school-aged persons and carries out the letter and spirit of the Right to Education Consent Agreement. (PARC vs. Commonwealth)
• 6.3.3 Follows the policies, procedures and guidelines outlined by the State Task Force. Reviews recommendations and communications from the State Task Force as a regular agenda item.
• 6.3.4 Cooperates with direct service provider agencies, both public and private, in planning for a continuum of programs and services.
• 6.3.5 Refers problems identified locally to approved private agency or to the State Task Force for clarification, recommendation or solution.
• 6.3.6 Recommendations to the STF or other approved private groups concerningbsolutions to local problems which may have ramifications on a regional or statewide basis.
• 6.3.7. Trains new members and serves as a vehicle for educating the community.
• 6.3.8 Review and comments on all intermediate unit and school district Special Education plans and budgets prior to submission to the Department of Education.
• 6.3.9 Assists the State Task Force in the collection of data to determine the effectiveness of the Right to Education for individuals who receive MR services.

That is actually a pretty cool list when you think about it…and those are the main things that I think parents wish to accomplish when they say “let’s start a parent group!” So if you are a Pennsylvania parent, contact your IU and find out when your LTF meetings are. If it has fallen flat, rally your friends and breathe new life into it. Many parents before us went through quite a bit for us to have these rights, so let’s keep it going.

If you are in Pennsylvania and want help with your task force, just email me and I’ll see how I can connect you. I am friends with both parent leaders of my county’s LTF, so we can probably guide you. If you are in a state and wondering if you have anything like this, your local or state Arc would be a good place to start looking.