Advocacy, Media, and Policy for Caregivers at the 2012 Aging in America Conference

Last month, staff from Family Caregiver Alliance traveled to Washington, DC for the 2012 Aging in America Conference. In addition to our Gilbert awards ceremony (read more about the award reception here), FCA staff also attended the Capitol Hill Advocacy Day, and presented a session entitled “Family Caregivers: Policy Perspectives, Media Musings.  The Aging in America conference coincided with the Supreme Court hearing arguments on the constitutionality of the Affordable Care Act and we snapped a few photos between sessions.

Capitol Hill Advocacy Day

On March 28, advocates from the Aging Network “stormed” Capitol Hill and heard from presenters about the current budget situation as well as updates on programs and legislation affecting seniors.  Bob Blancato spoke about a number of issues, including elder abuse and explained, “Silence isn’t golden.  It’s deadly when it comes to elder abuse.”  Another speaker, who works on Capitol Hill, urged aging advocates to speak loudly about the impact on seniors when cuts to discretionary and defense spending start in 2013.  While Medicaid and most of Medicare are not included in these cuts, the cuts to discretionary spending could impact programs that help seniors age in place.

Six U.S. Senators also came and spoke to the participants.  Senator Bernie Sanders (I-VT) gave a rousing speech about the widening wealth gap in America and the importance of not cutting funding for programs like Meals on Wheels that allow seniors, especially the most vulnerable, to age in place while preserving their dignity. Senator Kohl (D-WI) discussed his and Senator Mikulski’s (D-MD) version of the reauthorization of the Older Americans Act that would include funding for caregiver assessments.  Senator Whitehouse (D-RI), Senator Manchin (D-WV), Senator Blumenthal (D-CT), and Senator Casey (D-PA) also presented at the session which was hosted by ASA’s Public Policy Committee and the National Council on Aging. Participants from across the country then met with staff from congressional offices to discuss the reauthorization of the Older Americans Act, funding levels for aging programs and services, and the importance of addressing the rising costs of long-term care.

Policy Perspectives

On March 30, FCA convened a session with two parts.  During the first part, speakers focused on reviewing developments affecting family caregivers in 2011 and what 2012 holds for caregivers.  Bill Benson, from Health Benefits ABCs, discussed the flat funding levels for the National Family Caregiver Support Program and priorities for the reauthorization of the Older Americans Act.  Echoing calls from Capitol Hill Day, Benson suggested that the Aging Network will need to strengthen and increase how it advocates for programs.  To see his slides, click here.

David Lara from the Center on Budget and Policy Priorities presented on the dramatic cuts that state governments have made since the recession and the role that the Recovery Act (stimulus spending) played in preventing even steeper cuts.  Lara also discussed the perfect storm of the upcoming mandated sequestration cuts that will begin in January 2013 as a result of the Budget Control Act (and failure of the Supercommittee); the expiration of tax cuts and the need to raise the nation’s debt limit in late 2012 or early 2013.  He explained that while cuts to Medicaid are not included in the sequestration cuts, future cuts are likely.  Lara concluded with the importance of taking a balanced approach to future budgets instead of only looking to cut funding for services.  To see his slides, click here.

Sean Coffey from Family Caregiver Alliance presented on FCA’s new report, Family Caregiving 2011: Year in Review, and focused on research and developments in five areas in 2011, including: working and caregiving, care transitions, the economy and caregiving, Medicaid Home and Community-Based Services, and end-of-life care.  Citing cuts to compensation for family caregivers in Minnesota and California, Coffey posed the question: “Are Family Caregivers Worth Less?” He cited two studies released in 2011 that suggest family caregivers are worth more.  One study found cost savings in Medicare when a family member was nearby, and another report found lower average Medicaid expenditures and fewer nursing home placements in California’s IHSS program when participants have family caregivers.  To see his slides, click here.

Media Musings

Joanne Kenen, the Deputy health editor of POLITICO Pro , Howard Gleckman, Author of Caring for Our Parents, and Paula Span, author of When the Time Comes, participated in a conversation with Carol Levine, Director of the United Hospital Fund’s Families and Health Care Project, about media coverage of family caregivers.

Span discussed the wide types of stories that appear on the New Old Age blog, including a story focused on a policy in a Virginia continuing care retirement community that had restricted where residents could eat and had forced some couples to eat in different areas.  After the story was featured on the New Old Age blog, pressure continued to build on the management of the community until it changed the policy.

Panelists also discussed the fact that the downturn in print media meant that a lot of baby boomer journalists who could have written about caregiving are no longer working in media.

An audience member questioned if the media should give greater focus to the gritty, day-to-day realities of caregiving so that more people are aware of what it entails.  For example, instead of saying “incontinence,” should journalists talk about the reality of helping a parent go to the bathroom, or cleaning up after an accident?

Howard Gleckman suggested that there are also more stories about caregiving than just the “sainted caregiver.  He also urged audience members to think about how service providers can plan for less government money, suggesting that providers ask their communities, “If you’re not willing to provide tax dollars for these services, what about providing your time?”  Joanne Kennen agreed, noting the current gridlock in DC and suggested that providers will need to look at connecting with other organizations outside of government.

The panel also discussed end-of-life care, and Carol Levine shared that the most requested fact sheet from the Next Step in Care campaign is the “Family Caregiver’s Guide to Hospice and Palliative Care” (note to readers: this guide is available in English, Spanish, Chinese, and Russian).

Thank you to all of our presenters and to the audience members, we hope to see you next year in Chicago!