Policy, Politics and Family Caregiving:
Federal and State Perspectives
Organized by the National Center on Caregiving (NCC) at Family Caregiver Alliance (FCA) Policy, Politics and Family Caregiving: Federal and State Perspectives, a symposium sponsored by the Retirement Research Foundation and the Jacob and Valeria Langeloth Foundation was held at the annual joint conference of the American Society on Aging and the National Council on Aging in March 2009 in Las Vegas, NV.
The Symposium was moderated by Kathleen Kelly, MPA, Executive Director of FCA, who opened the event speaking on the trends of federal and state family caregiving legislation in 2007-08 with a special focus on those initiatives that have been successful. Ms Kelly's message was that over the past couple of years, policy makers have maintained their interest in helping caregivers and introducing legislation to support families in their caregiving roles. However, given these tough economic times and competing policy interests, few of these new initiatives have passed. "Therefore, caregiver advocates and family caregivers themselves must be persistent and creative in making caregiver voices heard in the halls of Congress and in state capitols across the country."
A distinguished panel of policy experts and advocates provided a national perspective on caregiving in the context of health and long-term care reform, explored innovative and forward-thinking policies and advocacy efforts in the states, and provided strategies for direct service providers, program administrators, family caregivers and others to become effective advocates for caregiver-friendly policies in their own states.
Karen Davenport, MPA, Director of Health Policy at the Center for American Progress, focused her presentation on caregiver issues and how they are shaped within the context of recent legislative activity on Long-term Care and Health reform efforts. She highlighted the Obama Proposal and the Baucus White Paper both proposing Medicaid expansion, improving care coordination and calling for savings from public programs to fund reform. Ms. Davenport noted that in the light of pending reform, caregiver advocates will need to be "opportunistic," strategically push for large scale changes and find a way to "weave" long-term care improvements into the delivery system.
Susie Butler, Director, Division of Provider Affairs, Office of External Affairs Centers for Medicare and Medicaid Services (CMS), presented on CMS's latest initiative on "building a conversation with the caregiver" through partnerships with other community organizations and a website that educates family caregivers on Medicare basics, Home Health, Mental Health and Nursing Facility Benefits, and more. She invited caregiver advocates "to be part of the conversation" by "letting us know how we can improve" and by "pushing information out to your members, employees, patients, clients."
Donna Folkemer, MA, Director, Forum for State Health Policy Leadership National Conference of State Legislatures (NCSL), quoting NCSL's recent report on state budgets, stressed that the "budget situation across the states is grim and getting worse." Therefore, advocates need to frame their messages in terms of efficiency and cost reduction. She continued that in this grim economic environment, caregivers are "more challenged than ever by big picture issues, such as unemployment and housing foreclosures." Ms. Folkemer held a special focus on Money Follows the Person, a federal program implemented in 30 states and the District of Columbia and relying heavily on family caregivers of persons with disabilities who have been in nursing homes to move to more appropriate community settings. It is anticipated that there will be great variability in how states are going to implement this program and it will test state Home and Community Based Services resources. She urged aging advocates to get involved in their states to assure that appropriate housing, services, and caregiver supports are available for persons who move back to their communities.
Katie Maslow, MSW, Associate Director, Alzheimer's Association, presented on federal and state policy trends/initiatives supported by the Association summarized in the following main positions: caregiver assessment must be included in health plans by Medicare, Medicaid and other public programs; family caregiver issues should be included in every proposal for care coordination and transitional care under Medicare reform; States should use the optional approved Behavioral Risk Factors Surveillance System (BRFSS) on caregiving and plan for analysis of the resulting data; States should convene an Alzheimer's/dementia task force to plan for and guide state efforts to improve Alzheimer's and dementia programs and services; and States should test and eventually make available effective, evidence-based family caregiver information, training, and support programs. Ms. Maslow cautioned that "...cuts to state budgets are the most critical policy issue for all of us who advocate for family caregivers."
Netsy Firestein, Executive Director for the Labor Project for Working Families, also the recipient of the Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Award 2008, for excellence in Policy & Advocacy, gave a brief history of the first in the country Paid Family Leave Law in CA, its main benefits for workers and touched upon other coalitions' successful efforts in other states to pass similar laws. Ms. Firestein argued that "workers should not have to choose between their jobs & their family." She expressed great hope that with the new White House Administration, the cross section between family and work as a policy issue will receive the attention it deserves in the light of being the First Lady's stated priority, and the creation of Task Force on Middle Class Families and the Council on Women and Girls in the White House. She concluded by calling aging advocates to action by being active in their respective states, identifying their local coalitions and making Paid Family Leave a priority in their Organizations' agenda.
Gail Hunt, President and CEO, National Alliance for Caregiving, presented on policy work and innovative initiatives being done by caregiving coalitions in the States. She encouraged the symposium attendees to organize in national grassroots caregiving movements focused on advocacy and activism; to organize and mobilize family caregivers around the country; and advance awareness around this underserved and often unrecognized population.
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