November 9, 2011
By Enid Kassner, Director of Independent Living/Long-Term Services and Supports at the AARP Public Policy Institute.
When I was growing up, my grandmother liked to say: “God helps those who help themselves.” This was a woman who knew something about hard work – coming to this country at the age of 17 from Romania; working as a seamstress until a marriage was arranged for her, and settling down in a small mid-western town. She bore 8 children, of whom 6 survived to adulthood. Amazingly, 5 of them are still alive – ranging in age from 81 to 95.
What I took from her refrain was that I could hope and pray for help or miracles, but I shouldn’t just sit around waiting for them to happen. My time would be better spent working hard to achieve my goals and realize my dreams. So what does all this have to do with public policy on family caregiving?
Policymakers who don’t understand the world of long term services and supports (LTSS) often voice alarm with the size and cost of the Medicaid program and call for solutions that depend on each of us taking personal responsibility for our future needs. My response to such “solutions” is – families in the United States already are taking personal responsibility to the tune of $450 billion a year. This is the economic value of the caregiving they provide, as estimated by the AARP Public Policy Institute – an amount that dwarfs public spending for such services by a factor of four.
So when the AARP Public Policy Institute, with support from The Commonwealth Fund and The SCAN Foundation, began planning for a state “scorecard” that would rank every state on the performance of its LTSS system for older people and adults with physical disabilities, we recognized the importance of including services that support family caregivers: the strong backbone of our nation’s current system.
Initially, as we began to build “dimensions” on which to rank the states – broad inclusive categories – our thought was to fold support for family caregivers under a larger umbrella. But with the wise guidance of our project advisors, we realized that support for family caregivers needed and deserved its own stand-alone dimension. Then came the hard part: finding good data on which to rank the states. Data that we dearly wanted to include (such as state spending on respite services) either were not available or were collected in ways that did not permit state-to-state comparisons because of inconsistent definitions of terms or classifications of services.
But we persisted, and the Scorecard (www.longtermscorecard.org) measures how well caregivers feel they get the support they need; how well state laws and systems address common needs of caregivers (such as protection from employment discrimination and having their needs assessed); and the extent to which nurses can delegate common health maintenance tasks to home care workers. We found a wide range of performance across the states, with every state having both some things they did well and areas that called for improvement. In fact, the Scorecard concluded that support for family caregivers went hand in hand with other dimensions of high performance, and that the most meaningful support for family caregivers might well be a better overall system that makes LTSS more affordable, accessible, and higher quality, with more choices.
Family caregivers are taking my grandmother’s dictate up a notch – they are helping others, they are helping our nation, they are not sitting around waiting for divine intervention, though I’d guess that many offer up a prayer from time to time. But who is helping them? Without support, they run the risk of burning out – a result that helps no one. States need to step up their support for family caregivers. I’m sure my grandma would agree.
Editor’s Note: The AARP Public Policy Institute is hosting a forum entitled: The Challenges of Family Caregiving What Needs To Be Done? on December 1st, 2011, from 9:00AM-12:00PM in Washington DC. For more information about the forum, visit:The Challenges of Family Caregiving What Needs To Be Done?
2) Scorecard Website (Provides data on performance indicators and states for comparison, and can generate customized, downloadable tables and bar charts)
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Helping Those Who Help Others by Enid Kassner, Director of Independent Living/Long-Term Services and Supports at the AARP Public Policy Institute is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.