Consumer Voice and Choice in Long-Term Care

By Suzanne R. Kunkel; Valerie Wellin | Go to book overview

Foreword

U.S. policymakers rely increasingly on analysis and research to assess whether current policies and programs are achieving their objectives and to gauge the potential impact of proposed reforms. Because long-term care consumes a growing share of total national health expenditures, the federal government and private philanthropies are investing in research aimed at reforming federal and state long-term care policy and improving programs. Consumer Voice and Choice in Long-Term Care is a welcome contribution both to the research literature and to the ongoing debate about the changes most needed in our nation’s long-term care financing and service delivery system.

Over the past 25 to 30 years, however, federal Medicaid policy has encouraged—but has not mandated—states to offer home and community-based alternatives to long-term care in nursing homes and intermediate care facilities for the mentally retarded. The Supreme Court’s 1999 Olmstead ruling interpreted the Americans with Disabilities Act as requiring that care be provided in the community in preference to institutions insofar as this is medically appropriate and affordable.

Shortly before his death in 2003, at age 45 from medical complications related to his paralysis, Drew Batavia vividly portrayed the limited options available to most Americans in need of labor-intensive and potentially costly personal assistance services as a choice between “the jungle or the zoo” (Batavia, 2003). He argued that promoting consumer direction (which he referred to as the “independent living model” of personal assistance services) was likely to prove the single most effective and costefficient way to enable people with disabilities to access long-term care while also maximizing their independence and ability for self care.

Policymakers have been extraordinarily attentive and responsive to policy research findings that support expanding opportunities for consumer voice and choice in long-term care. (See www.aspe.hhs.gov and www.cashandcounseling.org). In May 2002, the U.S. Department of Health and Human Services announced the Independence Plus Initiative to streamline federal review and approval to make it easier for states to offer consumer-directed service options in their Medicaid programs. In January 2006, in the Deficit Reduction Act, Congress amended Medicaid law for the same purpose. In making a case for consumer direction, it helps that the concept resonates deeply with basic American values and transcends partisan (Republican or Democrat, liberal or conservative) political differences. It also helps the case that a wide range of advocacy organizations representing elderly persons, younger adults with disabilities, people with mental retardation and developmental disabilities, and family caregivers

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