When a Real Crisis Hits

Crisis. The word traces its root to the ancient Greek word krinein, which means "to judge, separate, decide." A crisis is when you've got to make a decision, a choice and, too often, make it fast.

Sifting through the mail after our trip, I found the winter issue of People & Families, which is published by the New Jersey Council on Developmental Disabilities, and immediately turned to the lead article, on "what the world fiscal crisis could mean for government-funded services for people with developmental disabilities." While spending for programs for community services has increased, it was noted, it had "never kept up with the growing need." Cited was a Wall Street Journal article, When Crisis Hits the Disabled: Limited Options for Support and Housing Exist for Aging Caregivers and Their Children from April of last year.

The WSJ article noted that:

About 80,000 people with developmental disabilities nationwide are on waiting lists for various services to help them live in the community. Texas, alone, has about 35,000 people waiting for home and community services, in spite of funding last year to serve additional people.

Spending for such programs continues to increase annually, although levels vary by state. It reached $2 billion last year, which represented a 10% increase, says Charlie Lakin, who researches residential programs at the University of Minnesota. "But the reality is, it's not growing enough to meet the demand."

Moreover, options may narrow further as budget-strapped states try to hold down spending and the federal government looks for ways to control spending for Medicaid -- the main source of funding such programs -- the concern is that options will further narrow.

The WSJ describes what happened when 79-year-old Anna Dromgoole had to be admitted to the Plano Specialty Hospital and insisted that her 41-year-old son, Kent, who has Down Syndrome, be admitted, too, as there was nowhere for him to go. It was first thought that Anna Dromgoole would only be hospitalized briefly, but this plan "fell apart" when she went into respiratory arrest. The hospital's clinical liaison, Beth Lambdin, has explored a number of options and has had to consider having Kent live with her family. What especially concerned me in reading about this was that

Many people in Ms. Dromgoole's generation didn't expect their children with various developmental problems to outlive them and didn't explore options for them to live on their own. In some cases, they were afraid that something bad would happen to their children without their attentive eye or they were frustrated by lack of options when they did look.

It's estimated that 2.9 million people with "intellectual or developmental disabilities or some significant functional limitation live with caregivers"---their parents, usually, who are 55 years or older. Here in New Jersey, the Department of Human Services was sued last April by New Jersey Protection and Advocacy, Inc. for violating the rights of over 8000 developmental disabled people who have been waiting (over a decade, in some cases) to move into government-supported community housing. The department has a waiting list for housing, but few people ever leave the list except under emergency circumstances, as when a parent becomes ill or dies----when there's a crisis, like the one that Anna and Kent Dromgoole have found themselves in.

But rather than wait for a crisis that seems somewhat inevitable, the time to plan for that tomorrow when parents of disabled children grow elderly and need care themselves is today. We can't forestall or predict every crisis, but we can make preparations. Charlie is quite on his way to mastering using the microwave oven and while I know there's a lot more to cooking than that, it's something to see him come home school, put away his jacket and bookbag and homework folder, and make his own snack. Where Charlie will live when we're going is a recurring topic between Jim and me; one option---in which a disabled adult lives in a house with a staff of caretakes, as depicted in the film The Key of G--is one we're especially interested in.

Crisis is a word that is being heard more and more. Here in New Jersey where I live, Governor Corzine has announced that he plans to cut the state budget by $2.1 billion, yesterday's Star-Ledger reported. I know these sorts of cuts are going to somehow affect the education, supports and services that Charlie and many other individuals with disabilities rely on. Let's make sure that, when the powers that be on boards of education and in state offices make their decisions, they know about what happened to Anna and Kent Dromgoole, and know that we need to do to prpare for the future, before it's too, too late.