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International Approaches Encourage Long-Term Independence for Persons with Disabilities

International perspectives on long-term care are a largely untapped resource for improving the lives of the millions of Americans today and in the future. Long-term care touches virtually all families, and most of us will need assistance with the basic routines of daily life at some point in our adult life. For some, the assistance will be limited, such as help with shopping. For others, including persons with dementia, the assistance needed can be 24 hours a day for many years.

In all developed nations, including the United States, the overwhelming majority of long-term care received by persons with disabilities of all ages is provided by family and other informal caregivers. These families themselves often need support, especially when care needs are extensive. The direct and indirect costs to individual caregivers and to society, such as stress, lost wages, and lost productivity, are often enormous.

The United States does not have a comprehensive long-term care system. Arguably, it has no system at all. Instead, it relies upon Medicaid, a safety net program designed for persons with low incomes and few assets, as the primary financing source for long-term care. Benefits vary from state to state, and are far more generous for nursing home care than for care in home and community-based settings. America’s policies often inadvertently encourage long-term dependence, rather than enhancing long-term independence, which is what AARP research shows persons with disabilities want.

What lessons do the experiences of other nations hold for the U.S.? The need for long term care increases dramatically with age, and 29 other countries have older populations than the U.S. Many of these countries do not have especially enviable long-term care systems, but some do. For example, Germany and Japan have implemented comprehensive social insurance systems for long-term care. In addition to nursing home care, they cover a wide range of benefits in the home and community, including personal assistance services, adult day services, and respite care for family caregivers. These benefits are based on assessed need for assistance with everyday tasks, rather than on income and assets.

Cost containment is important in long-term care, as it is in health care. So far, long-term care programs in Germany and Japan are not breaking the bank, and enjoy widespread popular support. The pooling of financial risk at the broadest level has meant that individuals and their families do not have to bear the potentially catastrophic costs of long-term care.

It would be difficult for the U.S. to import any other nation’s long-term care system and impose it upon our distinct American cultures, values, and institutions. And the U.S. has many “best practices” and model programs, such as its PACE program and state Medicaid programs that permit consumers to direct their home care services. But these programs still reach only a small share of persons who need long-term care. Many Scandinavian nations and Austria, as well as Japan and Germany, have universal long-term care programs that reach large shares of their older populations and persons with disabilities. These countries can serve as “natural laboratories” for tracking the impact of long-term care policy changes on coverage, cost, quality of care, and quality of life.

Compared with research on health care, cross-national long-term care research is still in its relative infancy. Fortunately, international organizations such as the OECD, WHO, and EU are now conducting well-designed cross-national long-term care studies. And the wealth of information about long-term care in other countries available on the Internet is literally breathtaking. As in other fields, the speed of international communication and the potential for connectivity among researchers and opinion leaders are opening up exciting new avenues for collaboration. We need to take advantage of these opportunities in preparing to meet the needs of post-WWII boomers, who will expect better options for living independently with disability.

Mary Jo Gibson is a Senior Policy Advisor with the AARP Public Policy Institute. She has written extensively on health policy and long-term care issues for the past 20 years. This column is based on her recent paper, Long-Term Care in Developed Nations: A Brief Overview, Issue Paper #2003-13, AARP Public Policy Institute (Washington, D.C.: AARP), October 2003.

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