President Barack Obama wants to increase funding for a government program intended to make it easier for family caregivers to get respite care. These hard-pressed families desperately need the helping hand. But the White House initiative is a symptom of all that is wrong with long-term-care policy in the U.S.
Government assistance for those who suffer from chronic illness is both terribly underfunded and deeply disorganized. There are programs run by Medicaid and Medicare and the federal Administration on Aging. There are programs run by states and similar projects run out of Washington. This is a particular nightmare for those with disabilities who are struggling to stay at home. If you don’t believe me, try to find a local phone number for elder care assistance.
I live in Montgomery County, Md., and a quick look at my phone book shows 18 different numbers for various senior services. If I need help that is not provided though the county, I need to call the state, which requires yet another frustrating search. Over the years, offices on aging and disabilities have tried to create one-stop shopping to make it easier to find help. And Maryland has a pretty good Web site that tries to pull together all these resources in one place. But the various programs go on for screen after screen. Imagine trying to navigate this if you are 75 years old and caring for a spouse with dementia.
The respite care program Obama wants to expand is typical of the problem. Respite care is temporary assistance for families who are helping the frail elderly or those with disabilities live at home. It may be a home health aide who visits for a few hours so a spouse can get a break. Or it may be an adult day program or transportation aimed at helping the person receiving care get out of the house.
The Lifespan Respite Care Act was passed by Congress in 2006. And its laudable goal was to encourage states to coordinate services aimed at giving family members a temporary break from their often stressful responsibilities. For instance, states could use the funds to make more information available to caregivers about respite services or to train care workers.
But the new law ran into two problems: Individual state agencies trying to protect their turf—and no money. For instance, the original law allowed up to $71 million for the program this year. But in its most recent budget, Congress agreed to make only $2.5 million available to states. The president now says he wants to increase this to about $50 million next year. At a time when the $1.4 trillion federal deficit is putting enormous pressure on spending programs like this, I’m willing to bet he’ll never get it all. And even if he does, he’d still only be spending a bit more than half of the $91 million the original law allowed.
For some sense of how little this is, think about it this way: By the administration’s own count, there are 38 million caregivers in the U.S. (others estimate there are many more). Even if Congress gave Obama the full $50 million, that works out to $1.31 per family. Of course, that's a lot better than the six cents being spent today.
Worse, cash-strapped states are slashing their subsidies for the very adult day programs Lifespan is trying to promote. In a states such as California, for example, a federal program to promote these services won’t help much if the programs themselves are shuttered—an idea now being debated in Sacramento. And no small federal grant program will save them.
In today’s awful budget environment, financial pressure on government services for the elderly and others with disabilities will only get worse. The president has already proposed freezing overall spending for social programs exactly like Lifespan for the next three years. If more is spent on Lifespan, don’t be surprised to see funds cut for other badly needed assistance aimed at exactly the frail elderly and younger adults with disabilities.
At the same time, Medicaid—the primary long-term care support program for the sickest and poorest among us—faces its own budget crisis, both in Washington and in the states that pay about half its costs.
The best solution is to free families from the whims of politicians and the inevitable battles over government dollars. National long-term care insurance, such as the proposed CLASS Act, would help in two ways. First, it would give people cash benefits they could use however they want. They would not need to rely on underfunded and possibly inaccessible government programs. If a wife wanted to enroll her husband in an adult day program, she could just do it. Second, because millions of consumers would, for the first time, have the financial resources to pay for these services on their own, new private services would spring up that might do a better job than today’s diffuse and underfunded government programs. It is at least worth a try.
Howard Gleckman, a resident fellow at the Urban Institute, is author of "Caring For Our Parents" and a frequent writer and speaker on long-term care issues.