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

Difficulty in recruiting and retaining direct service staff, such as nursing assistants and personal care attendants, is growing. According to some estimates, the need for these workers will double over the next decade. Unmet need for registered nurses is also increasing. Reports of quality problems also continue in assisted living facilities, despite efforts to support residents' privacy, choice, and independence. Efforts to promote quality in supportive housing other than assisted living have been sporadic at best.

Policy Implication: Improve the quality of long-term supportive services. One important element of improving quality would be tools that enable individuals to use information on quality in selecting service providers. A navigation system should include up-to-date reports on quality based on standardized measures of each provider's performance. In addition, states need to do a better job of overseeing providers of services through better measures of performance, better systems of responding to consumer complaints, and much stronger enforcement action against those who fail to provide quality services. Providing funding to support strong, independent ombudsman programs would supplement those formal state efforts.

Policy Implication: Increase the supply of frontline workers. One way for states to improve the stability of the workforce is to provide reimbursements for long-term supportive services that are adequate to pay for sufficient numbers of suitably trained and reasonably compensated workers. Providers can play an important role by developing more responsive systems to improve morale and reduce turnover among workers providing long-term supportive services in all settings.

(8) The costs of long-term supportive services, which individuals typically need at the time their income is most limited, are often unaffordable to individuals with disabilities and their families.

The need for long-term supportive services can be financially catastrophic to individuals with disabilities and their families, even those with substantial income and resources. A recent study estimated that only 27 percent of older persons have sufficient income and assets to be able to withstand a long-term care "shock" totalling $150,000 over three years without impoverishing themselves. Lower- and middle-income Americans with disabilities often find that their options are limited and out-of-pocket costs are burdensome. In the AARP/Harris Interactive survey, persons 50 and older with disabilities with incomes "in the middle" were the income group most likely to say that having a way to pay for long-term supportive services (such as help with bathing or shopping) and equipment would be a major improvement in their lives.

The high costs of a long-term disability remain largely uninsured. Public programs such as Medicaid pay only after individuals have spent down their income and exhausted their assets. Private health and long-term care insurance account for only 11 percent of total long-term care expenditures in the United States. Disability income insurance policies aimed at replacing lost wages usually end by age 65 or earlier.

Services in a nursing home average $55,000 a year; hourly home care agency rates average $37 for a licensed practical nurse (LPN) and $18 for a home health aide.

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