New Ways to Advocate are Needed

November 14, 2016. The Pew Charitable Trust was the location for America Cares, a forum on caregiving co-sponsored by Altarum Institute and Caring Across Generations. The forum brought together local and national leaders, advocates and family caregivers to discuss the challenges and opportunities that lie ahead as the administration changes hands. Although there are 60 million caregivers in the U.S., they have received scant recognition for the valuable role they play. Attendees in the room and online were outspoken about the need for grass roots movements, changes in the health care system and support at the state and Federal level.

One of the consistent messages from speakers was a need for caregiving to be talked about in a much more serious way, pointing out that it is not only a personal, moral concern, but a pressing economic issue. By 2030 the elderly population will double. More significantly, according to the Family Caregiving Platform Project, those 85 and older, the oldest old, are the fastest growing segment of the population, increasing from 1.6 million to 6.2 million people by 2050. This will lead to significant problems in supplying caregivers and in paying for nursing home care.

Most people who need nursing home care at the end of life rely on Medicaid to pay for it. As one speaker concluded, "That makes Medicaid the primary source of long-term care insurance." As the number of elderly increases, this will become an unstainable expense for the states.

A changing administration was anticipated for both its opportunities and challenges. Edwin Walker, from the Federal government's Administration for Community Living, said his staff was preparing to meet with transition teams as early as this month. An impassioned commentary from Ben Chin of the Maine People's Alliance compared the current governor of Maine to our new president elect. Having witnessed budget cuts and resulting chaos in his state, he warned that we may be in for more of the same on a national level. When faced with a closed minded determination to cut spending despite results, he said,  the old ways of advocating had not succeeded.

The many organizations represented at the forum are seeking ways to address the challenges. Some of the ideas discussed:

• Recognize caregiving as a life span issue, encompassing child care, paid family leave for illness, elder care.

  • • • • Partnerships! Public, private and community resources have to be pooled.

          • • • Caregiving has bi-partisan support. Consider reaching out to governors and mayors in the next election cycle. States can take more immediate steps while we wait for changes at the Federal level.

        • Look at the National Academy of Medicine Report on Families Caring for an Aging America which studied this issue and came up with recommendations.

          • • • Create more training opportunities for caregivers (both paid and unpaid) and create ways to assess outcomes, such as fewer calls to 911 or reduced hospitalizations.

Check the Altarum Institute website for updates which will include a video of the forum, partner information and resources for future actions.