A Whole New World

do not despise

In the summer of 1976, Kirstin was enrolled at the Marc Center preschool in Mesa at the ripe old age of thirteen months. I couldn’t imagine what she would do in school at that age. She wasn’t even walking yet. Kirstin had a speech therapist, physical therapist, and an occupational therapist. She was hardly talking, and I didn’t think she was ready for a job. This seemed like a lot of therapy for such a small child.

Marc Center was more than just a preschool. It provided for the needs of special people of all ages. There was a day program for school-aged children who were considered trainable mentally disabled. In addition, adults received services from Marc Center that included independent living skills and vocational training.

In 1975 Congress passed Public Law 94-142 (Education of All Handicapped Children Act). Today it is known as IDEA (Individuals with Disabilities Education Act). It requires school districts to provide a free, appropriate public education to all children no matter what the disability. Over the years it has been redefined and today carries so much clout that it sends school districts into a tizzy trying to comply. In 1975 the concept was new, but school districts had to figure out a way to include these students in their schools or face losing federal funds. What that meant at Marc Center was that they no longer needed a program for school-age children. Starting in the fall of 1976, all of their students would be going to public school.

Since we came on the scene the year 94-142 went into effect, we never saw what the school program was like at Marc Center. But we did have a great deal of involvement in the adult program. Our experiences at Marc Center opened up a whole new world to us. It was a world of shocking truths and amazing changes. We were there to witness them all.

At that time, the Arizona legislature was holding hearings about what should be done with a residential facility in Coolidge, Arizona. It was home to hundreds of people with mental retardation who had been institutionalized there, some of them since birth. Housed in a clinical setting, most residents had no hope of ever leaving. Families had been encouraged to place their children there and many of those children spent their entire lives institutionalized. Now those people who had been isolated from society were asking for a chance to live in a home like everyone else. Craig and I attended some of the hearings. We sat in awe of those residents from the institution who now stood before the legislative committee and pleaded their case. I can’t imagine how I would feel having to face such a panel, but these people were articulate and sure of what they were asking. I thought of other minority groups who had to fight for equal rights. Like Martin Luther King Jr., they were talking about their dreams for a brighter future. I thought of Chief Seattle, asking for fair treatment for his people, or Cesar Chavez and the California grape growers, fighting for fair working conditions. They did not expect someone else to speak for them but stood up for themselves just like any other group of people battling injustice. What they wanted is what was spoken of in the Bill of Rights … life, liberty, and the pursuit of happiness. They wanted to be able to live as independently as possible in the community with the rest of us. It seemed like a simple truth to me; they should have that right.

Fortunately, the Arizona legislature saw it that way as well. As a result of these hearings, most of the Coolidge facility was closed, and all but the most severe residents were placed in group homes in communities throughout Arizona. Of course there were some difficulties with neighbors who had no knowledge of people with cognitive challenges. Some were convinced that their new neighbors were oversexed and unable to control themselves. But little by little, the former residents of the Coolidge facility won their rights and adjusted to their new lives.

We met a man who had lived in an institution for thirty years and was now learning to balance his own checkbook. Like many others, he was benefiting from participation in the adult program at Marc Center. Their levels of abilities varied, and so did their needs, but now they had a chance to live as independently as they were capable of. It was an amazing experience, and we felt so fortunate to be a part of it.

Today, there is only one intermediate care facility in Arizona. It houses about one hundred residents whose needs are so severe that they are unable to survive outside a clinical setting. In the past five years, no new patients have been added to that facility. The goal of the DDD is to keep those with intellectual challenges in their homes if at all possible. In fact, Arizona ranks number one in the country in that regard. In addition to living at home, supported living arrangements and group homes are also very good options. Ultimately, the choice comes down to the person with the special needs, and that is as it should be.

From This Little Light of Mine: A Woman with Down Syndrome Shines Brightly in the World.

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