MISSOURI WATCH: SOMEWHERE BETWEEN A ROCK AND A HARD PLACE

Even if it seems like only yesterday, a small group of men and women gathered years ago in a Jefferson City office to make a decision that would affect the lives of thousands of young boys and girls and their families. It was a decision not made easily or quickly or without a great amount of soul-searching, for it had consequences far beyond the confines of that office and no one involved was unaware of the risks.

The decision had these components: additional services were much in demand and badly needed for a large number of young children who had been born mentally retarded. Every governor from John Dalton down to the incumbent, John Ashcroft, had been supportive of efforts to improve the lot of these children. Every session of every General Assembly since 1960 had approved significant increases in state funding for hundreds and hundreds of sweet, innocent boys and girls whose developmental disabilities deserved special care, training and treatment.

Despite valiant efforts that saw a budget figure double and then double again and double once more, the stream of families seeking assistance for their MR-DD children kept increasing, the numbers growing more rapidly than the money appropriated. It was like swimming for shore, except the shore kept moving farther and farther away the faster one swam.

The waiting lists for state habilitation centers kept growing with greater urgency because of increased public awareness of the need for specialized training for these special children, and there was a growing acceptance of the changing treatment modality that went beyond the long-traditional methods of mere custodianship. Children could be treated in different environments, depending on the severity of their particular disabilities, and this offered the possibility that, with sufficient funding, the suffering of hundreds, even thousands, of children could eventually be alleviated. One could hope that the torture of their parents might be lightened as well.

So, back to that decision in Jefferson City. The group sitting around that table years ago recognized that any hope of significant increases in state funds was useless. Both the state and the nation were in a recession, which meant that most families in Missouri were spending less, getting by on less and sending less to the state treasury. With expectations of no additional state funding, the need seemed even more urgent than before, and the mood around that table in that office was not unlike the realization that the well had run dry.

The only remaining source of needed support was the federal government, which had already been funding treatment programs in other states. The problem was the feds, as might be expected, required recipients to meet requirements that added to the cost but did next to nothing to enhance the quality of care that could be provided. New employees would be needed, expenses that had been avoided in the past would be required and many new layers of regulations as well as far too many bureaucrats would have to be added.

Was the aggravation of dealing with federal bureaucrats who intended to run the show in Missouri if they brought along the money really worth it? No one sitting around that table had any doubt who would be writing the rules once Missouri went to bed with the federal government. You can thumb your nose at the drummer but when you join his parade you march to his cadence.

With no increased funding in sight, with pleas for help increasing in decibels, the decision was made. Someone sitting around that table said after the vote, "God help us if they ever cancel this program."

The money began arriving from Washington, and the results were predictable. The money was fine but the group had to hold its nose when the orders came down. It got worse and worse and worse.

But more and more who needed treatment were able to get it. More and more services were available. And more and more lives were made a bit more livable.

The real world arrived a short time ago when members of Congress got serious about cutting expenses, reducing the deficit and eliminating programs that cost billions of dollars. What everyone had been demanding began moving closer to reality, and soon it will be fact. No one knows what the full effects of this will mean, but there are hundreds and hundreds of families who know the changes will be traumatic and life-changing and heart-rending. Services will be slowed, some will stop.

Did the group make the right decision? I really don't know to this very day. I guess it depends on how much help the kids will get from God.

~Jack Stapleton of Kennett is the editor of the Missouri News & Editorial Service.