Respite

The Utah Real Choice grant produced “The Caregiver Guide” and they have shared several modules. Topics covered include: Community Supports to Stay at Home, Caring for a family member with mental illness, Hiring and managing personal assistants, Assistive technology, Creating an accessible home, and Caring for a child with special needs. Modules are also available in Spanish.

This is the fourth in a series of newsletters produced at the Exchange to provide assistance to our CMS Real Choice Systems Change grantees. This newsletter is produced biannually. Topics include: Building Nursing Home Transition into a Balanced Long-term Care System: The Washington Model, Individualized Back-up Planning and Independence Plus in Louisiana & New Hampshire, Participant-Centered Planning & Individual Budgeting, South Carolina's Care Call, and Money Follows the Person.

This Issue Brief summarizes the results of a recent descriptive study, Medicaid and Family Caregiving: Services, Supports and Strategies Among Aged/Disabled HCBS Waiver Programs in the U.S. (Feinberg & Newman, 2005). This issue brief 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. The brief highlights key findings and summarizes conclusions.

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.

This report describes the FY 2002 and FY 2003 Grantees’ challenges and progress using information provided by the Grantees during the reporting period October 1, 2003 to September 30, 2004. The report describes grant activities in four major LTC systems areas: Access to Long-Term Care Services and Supports, Services, Supports, and Housing, Administrative and Monitoring Infrastructure and Long-Term Care Service and Support Workforce

Over the last decade states have made committed efforts to support individuals living at home with families. One example is the Illinois Home Based Support Services Program (HBSSP) which is a model consumer-directed program for adults with developmental disabilities and their families. This program families with an individualized budget of approximately $1,500 per month to design and direct supports. This paper evaluates the model and answers questions about service utilization.

This monograph summarizes the history of caregiver assessment; considers the reasons for assessing family care; discusses what, whom, when & where to assess; illustrates areas to assess; highlights examples of existing tools; explores commonalities as well as differences in caregiver assessment instruments; points out areas of caregiver assessment that have been neglected; identifies best practice criteria to consider in designing & implementing assessments; & discusses training issues.

This technical assistance document is the first in a series of papers that examines issues pertaining to respite services as part of the Medicaid program. By reviewing the prevalent definitions of respite in the published literature and federal documents, we seek a consistent view of respite services that can be used in the development of administrative policies to support respite for Medicaid HCBS beneficiaries and their informal caregivers.

The Community Living Exchange Collaborative at Rutgers Center for State Health Policy hosted a conference call for the Respite Grantees to discuss the outline for a proposed brief on the definition of respite. The agenda included an introduction by Susan Reinhard, the CMS perspective from Deidra Abbott on \"what is respite? - National perspectives and initiatives\", the state perspective from Bruce Whitten, Arkansas, and all participants had an opportunity for Q&A and general discussion