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Bridging the Gaps: State and Local Strategies for Ensuring Backup Personal Care Services

People with disabilities face a particular kind of risk when authorized personal care services (PCS) are not delivered. In some cases, people may not receive the support they need, such as assistance that enables them to go to work or to maintain their independence and self-direction. In other cases, these individuals can find themselves at risk of emotional distress and even physical harm resulting from, for example, going for hours without being transferred from a bed to a wheelchair or to the bathroom, skipping medications, getting insufficient food and water, and being unable to attend to personal hygiene.

This AARP Public Policy Institute report by Dorie Seavey and Vera Salter of the Paraprofessional Healthcare Institute examines state and local initiatives to ensure that effective mechanisms and safeguards are in place to identify and respond to service delivery failures that require backup coverage for Medicaid PCS.

Key Report Conclusions:

  • States rarely specify uniform standards for providing backup for PCS service breakdowns.
  • State quality assurance systems with respect to backup tend to be unevenly developed across waiver programs and even less well developed for non-waiver PCS programs.
  • The vast majority of states rely on periodic review of partial records or samples of records to monitor the delivery of authorized services.
  • The growth in consumer-directed PCS raises important issues about the role that states can play in ensuring that consumers have access to backup services beyond informal arrangements with family and friends.
  • Experience to date across the states reveals a variety of ways in which state government and other long-term care stakeholders can encourage the development of greater backup capacity at both local and regional levels.

While most states appear to be at the earliest stages of designing comprehensive approaches to ensuring backup service, policymakers, providers, researchers, consumers, and advocates seeking to improve backup services can draw upon the emerging state-level experience and lessons that this report details. (35 pages)

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