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Beyond 50.03: A Report to the Nation on Independent Living and Disability: Executive Summary

Long-term care is the single largest component of direct health-related out-of-pocket spending by Medicare beneficiaries, followed by spending on prescription drugs. Moreover, the indirect costs of providing long-term supportive services in the home, borne by unpaid family members and friends of persons with disabilities, are immeasurable.

Policy Implication: Insure individuals against the high costs of long-term supportive services. Our nation's current financing structure relies too heavily on individuals and families to bear the financial burden of long-term supportive services and other types of assistance for persons with disabilities. The financial burden can be so large that, for many individuals, including those with middle incomes, the only alternative is Medicaid, which requires impoverishment to receive benefits.

Finding ways as a society to share these unpredictable costs more widely must become a national priority. Expanding independent living options for individuals will depend on more societal responsibility for financing-specifically our ability to pool our resources and spread the risk broadly. A social insurance program for long-term supportive services based on functional criteria should be the core of the solution, complemented by private long-term care insurance options, with solid consumer protections, for those who can afford the premiums. In addition, we need a better Medicaid safety net, especially for home and community-based services. Medicaid's safety net for lower-income individuals is particularly important to persons with disabilities at this time of economic uncertainty. Unfortunately, when state budgets face shortfalls, Medicaid home and community-based services and other "optional" services may be cut, since they are not mandatory. Finally, coordination of the disparate funding streams could lead to some economies and efficiencies.


Making Sense of It All

People age 50 and older with disabilities clearly are not satisfied with the current limited range of independent living options. The desire for more and better choices may be driven, in part, by higher educational levels and more diversity in today's older population as well as the growth of the independent living and disability rights movements. At the same time, innovative options for better service delivery and financing, being pioneered both in the United States and abroad, could make a dramatic difference in their lives.

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