It shouldn't take a crisis for families to get help

Nearly 26 years ago, my cousin Bill had a stroke. He was young, in his late 20s, I think. He survived but he requires around-the-clock care. His parents and his sister are his primary caregivers. He lives in the family home in Colorado.

If not for advances in medical science, Bill wouldn't be here. His family is grateful for every new day with them. But they've also learned how caregiving can exact a toll on them if they don't take a break once in a while. A couple weeks a year, Bill, who is a veteran, receives care at a veterans nursing home.

I shudder to think how my aunt, uncle and cousin would cope if they didn't get this much-needed break. Because they live in such a small and rural place, hiring in-home health care is a pipe dream. For the most part, they're on their own.

My aunt and uncle aren't unlike other families coping with a child, spouse or parent with a severe disability. Respite care may be just as inaccessible to them because of the cost. Those on waiting lists for government services face very long waits and learn to make do for themselves.

There's a growing disconnect between advances in medical science and public policy. Medical science enables premature babies, accident victims and others to survive conditions and maladies that decades ago would have killed them. But some people, like my cousin, don't come out of the experience whole. They need some degree of assistance the rest of their lives.

But public policy is a tricky business. How does government, which always has limited resources, decide who gets what? How does government decide who gets served first?

So goes the ongoing debate over the state Division of Services for People with Disabilities waiting list. Nearly 1,900 Utahns are on the list, some who need very basic services such as respite for caregivers or speech therapy. Others have more intensive needs. Arguably all could benefit from the help.

But advocates say the waiting list is unworkable. The people who are helped are people who are in crisis or close to it. People who needed smaller — and less expensive — supports are left wanting.

What kind of sense does this make? Whether it's maintaining one's health or an automobile, it's common sense to take care of little problems before they become big, overwhelming problems. It's also the most cost-efficient approach.

But to hear advocates tell it, the waiting list functions in a very dysfunctional way. There's funding for the very worst cases but not enough funding for people who need less intensive services to ensure they do not go into crisis.