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Long-Term Care: the Key To Successful Health Care Reform

With all the shouting and animosity at town halls and on blogs, is it possible to find any common ground in the current debate around health care reform debate?

One side argues that meddling in our market-based insurance system will limit consumer choices and cost a fortune. Another side contends that we’re heading for disaster if we don’t do something now to extend coverage to more people.

In a sense, both sides are right. The current situation is clearly untenable: Around 16 percent of Americans have no health insurance, with that number growing as people lose jobs and benefits, and health care costs keep escalating. But trying to stretch existing dollars to cover those 46 million uninsured people probably won’t work unless we make some more fundamental changes.

One necessary but overlooked change involves long-term care — the ongoing medical care, hands-on support, and domestic services that disabled and elderly people need, sometimes for many years. Long-term care is a major cost driver within the health care system, now accounting for about 12 percent of all health expenditures. Medicaid and Medicare (our current “public options”) pay the bulk of long-term care costs.

In 2002, U.S. national spending on long-term care totaled $180 billion. Nearly two-thirds of that amount went to institutions such as skilled nursing facilities — even though most people would much prefer the more cost-effective option of home health care, getting help from personal care assistants or nursing aides whom they or their family members train and supervise. Nursing home placements cost, on average, twice as much as home care.

Yet federal policy is biased toward institutional care: Every state, in order to receive Medicaid funds, must pay for nursing home placements for eligible clients. In contrast, those progressive states that want to offer the choice of home care must actually obtain federal waivers to do so. In-home care is the exception rather than the rule. This leaves home health services underfunded — or, in some states, completely unavailable — and thus forces people to give up their independence to enter nursing homes.

I have friends who found themselves inhabiting a tiny room with a roommate they didn’t like, with a dull daily routine, and a life lacking in opportunity for excitement. Why? Because they needed a little help each day, and had no access to home care.

I’m fortunate to live in a state which offers the Medicaid “home and community-based services” option. Due to a neuromuscular condition, I require daily assistance with dressing, eating, showering, getting into my wheelchair, and more. With home care, I get to live in my own house, write for a living, and raise my child, while receiving the support I need to stay alive and healthy. Without it, I’d be forced to live in a nursing home, along with a lot of other people who don’t want to be there.

States that have extensive community-based support programs serving people with disabilities have had noticeably slower growth in long-term care spending than states that favor nursing homes, group homes, and the like, according to a recent study funded by the National Institute on Disability and Rehabilitation Research. Generalizing that trend, we have a better chance at controlling our nation’s health care costs if we shift our priorities and our resources away from institutional settings, and toward home and community-based services.

As baby boomers get older, many more people will need ongoing help with daily activities. Yet none of the major reform proposals address the future of long-term care, either its quality or its costs.

We could remove the institutional bias from Medicaid and Medicare by incorporating elements of the Community Choice Act (CCA). The CCA would establish community attendant programs nationwide, directing funds toward the client’s choice of setting, whether institutional or home-based. Although it currently boasts over 100 House co-sponsors and over two dozen Senate co-sponsors, the CCA has not moved onto the broader health care reform agenda, where it belongs.

President Obama talks about making “hard choices” in order to develop a sustainable health care system. One of those hard choices must be to challenge the institutional bias in our health care spending, to free up billions of dollars which could cover more people and, for those who need long-term care, could provide better services in the community.

Unless we do that, exponential cost increases will undermine our health care system, and another generation of Americans will be consigned to stagnating in nursing homes.