If our nation is to secure the health and quality of life of future generations of older Americans, we have to treat long-term care with the urgency it demands, making it as big a priority on the national healthcare agenda as the uninsured and rising health costs.
This might strike some in the health policy world as alarmist, but consider these facts: The 65-and-over population is projected to double from 2000 to 2030 to 71 million. A recent analysis found that 69% of people over 65 need some long-term-care assistance before they dieon average, 1.9 years of care at home (provided by formal or informal caregivers) followed by 1.1 years in nursing homes or assisted-living facilities.
A 2007 U.S. Census Bureau survey of 959 Americans from ages 21 to 75 found that while most respondents had a good understanding of their risk of eventually needing long-term care, they drastically underestimate its cost and overestimate Medicares role in paying for it. Seven in 10 think the average annual cost of nursing-home care is $30,000, less than half the actual national average cost of $70,000. And 40% believe that Medicare covers the cost of nursing home care (it does not).
In other words, few people are adequately planning for old age, and government isnt doing much better.
While they may rely on Social Security for post-retirement income and Medicare for medical care, most people do not have a financial plan for long-term-care costs. Consequently, they are forced to pay for this care out-of-pocket until they have depleted savings and assets and become eligible for Medicaid. In 2004, approximately one-third (or $15,000 per disabled senior) of total long-term-care spending was financed out-of-pocket, not including the value of donated informal care.
Public education campaigns around the topic of long-term care have done little to fill these gaps in knowledge, in part because of the difficulty of facing ones own decline and the lack of practical, accessible long-term-care options.
Despite the alarming statistics and innumerable reports and studies by commissions and governmental agencies, there is little concrete planning or action in Washington on solving the long-term-care conundrum. Leaders in all sectorsacademia, research, providers of care, business, government, advocacy and labormust reach consensus on a viable federal financing approach that limits seniors financial exposure, better targets public dollars and creates incentives to continue helping families.
Unlike the broader healthcare policy and political community, the opinion leaders surveyed support a public-private financing solution and the need to bring employers into the picture. They also favored a premium-based Medicare long-term-care benefit option. We have to wait and see whether such proposals can gain sufficient political support.
Those seeking solutions might start by looking to the states, which have been rebalancing long-term-care spending toward home- and community-based services in response to consumer preference as well as the increasing cost of institutional care. From 1999 to 2006, there was a decline of more than 8% in the number of nursing home residents age 65 and older.
States have had some notable successes using federal Medicaid waivers to experiment with new service-delivery models. These include adult day care, respite care, case management, medical transportation and caregiver preparation.
Taking advantage of many of these new services, more elderly seek to age in place through a new form of home-based care that has arisen almost organically. Naturally occurring retirement communities have sprung up in the form of concentrated populations of older individualssharing a residential building, a housing complex or a geographic area. Another trend is known as cash and counseling, which encourages consumer direction in long-term-care choices by offering frail elders and adults with disabilities on Medicaid the option to manage a flexible budget and select the mix of goods and services that best meet their personal-care needs.
While there have been important steps to establish measures of quality in long-term care, to provide this data to consumers and to begin to tie payments to quality, much of this work has focused on institutional care. There is a need to achieve agreement on quality standards and metrics in home- and community-based care, including what patient outcomes to strive for in a population that is not expected to be cured of their disabling conditions.
Technology must be deployed to make long-term care more effective. Information systems improve coordination and collaboration across providers and settings, engage patients and families, and increase workforce capacity. Telemonitors placed in patient homes can extend the reach of caregivers by allowing for remote monitoring and early detection of symptoms that require intervention, in time to prevent a visit to an emergency department or an avoidable hospitalization.
Even if we solve these other issues, there can be no long-term-care system without a sufficient and well-prepared workforce. Long-term care is personal and relationship-centered, and workforce development is crucial to providing quality care. There are anticipated shortages among those who provide this care to older adults, including nurses, social workers and geriatricians. And yet the existing education and training system is woefully unprepared to help these caregivers gain the needed skills and competencies to care for older adults.
In particular, the direct-care workforce of paraprofessionals (mainly women ages 25 to 54), responsible for much of the hands-on, long-term care, continues to be insufficient, for reasons such as low wages, lack of benefits and little opportunity for career advancement. Employers will need to make these jobs rewarding through decent salaries and benefits, and offer both continuing education and advancement opportunities.
The next generation of older Americans is going to be different. They will work longer past age 65, are more likely to want to remain autonomous and in their own homes and will demand a higher quality of life as older people. The healthcare system will need to meet this demand with a new model of long-term care that integrates acute, primary and long-term care and at the same time provides the supportive nonmedical services required to maintain high physical and cognitive function.
We need to do all of this now, long before a crisis occurs and panicthe enemy of informed decisionmakingsets in.
Carol Raphael is president and chief executive officer of the Visiting Nurse Service of New York.