Reports

This AARP Public Policy Institute fact sheet and report outlines the need for publicly funded respite services for family caregivers and describes the types available. The research concludes that publicly funded caregiver support programs play an important role in sustaining and strengthening the unpaid, informal care provided by families.

The National Council on Disability (NCD) released this report on April 15, 2005. This report provides an overview of steps the Federal Government should take to build a solid and resilient infrastructure that will enable the government to include the diverse populations of people with disabilities in emergency preparedness, disaster relief, and homeland security programs.

The majority of public funding in the US for home and community-based care comes from Medicaid. Yet we know relatively little about how and in what ways Medicaid HCBS waiver programs support family caregivers or how such waiver services coordinate with other federal or state-funded caregiver programs. This descriptive study is the first to characterize and analyze the role of Medicaid HCBS waiver programs in supporting family and informal caregivers of frail elders and adults with disabilities.

Although consumer direction is a growing trend in publicly supported HCBS programs across the states, we know relatively little about how this approach is implemented in the states. This national study aims to describe the role of consumer direction in publicly funded family caregiver support services and HCBS programs with a family caregiving component. This report addresses three questions with the intent of informing policy discussions.

State policy makers and consumer advocates are advancing programs and policies to support community living for all individuals. Operationalizing principles of “self direction,” “consumer direction,” or “participant direction” entails many details. This State Policy in Practice technical assistance document offers concrete information and specific state examples on ways to implement participant-directed planning and individualized budgeting.

Rutgers Center for State Health Policy/National Academy for State Health Policy Community Living Exchange Collaborative organized a site visit for Money Follows the Person grantees to learn about the Pennsylvania Community Choice Initiative. The initiative was designed to expedite access to home and community based services to avoid admission to a nursing home. The site visit was attended by grantees from California, Idaho, Michigan, Nevada, New Jersey and Texas.

A key component of consumer-direction includes methods to ensure that essential supports are provided. This State Policy in Practice technical assistance document offers a practical example from the State of South Carolina. Care Call is a system developed to help South Carolina monitor service delivery provided though South Carolina Choice, an Independence Plus waiver that enables self-direction, and its other traditional home and community-based services (HCBS) waiver programs.

Under Independence Plus Medicaid programs, states must assure that necessary safeguards have been taken to protect the health and welfare of persons receiving services. A key component of participant-direction includes individualized backup planning to ensure that essential supports are available in situations that pose a risk of harm to the participants. These examples are instructive to other states that are considering Independence Plus applications.

This report provides the latest national and state data on Medicaid enrollment and spending for individuals enrolled in both Medicaid and Medicare, also known as dual eligibles. Nationally, there are 7.5 million dual eligibles and while they comprise 14 percent of the Medicaid population, they account for 40 percent of Medicaid spending.

Many Real Choice System Change grantees are struggling with the issues that effect youth with disabilities that are aging out of foster care. The following attachments are promising practices and demonstrated strategies about the subject. Review either of the two reports about Transition Planning for Foster Youth with Disabilities. A resource list of organizations and websites is also included.