Family Caregivers are Finally Becoming Visible

family caregivers

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In early December, the US Senate passed a bipartisan bill co-sponsored by Wisconsin’s senator, Tammy Baldwin (D), and Maine’s senator, Susan Collins (R). This is a real step forward in recognizing the importance of caregivers to maintaining the health and well-being of their loved ones and of our health care system.

Sen. Baldwin said, “Family caregivers are integral to our long-term care system and our economy, but are too often over-looked as part of the care team for seniors and those with disabilities. If we are serious about ensuring that our older adults and loved ones with disabilities receive the highest quality care in their own homes, we must formally recognize and support family caregivers.” Her understanding of caregiving came from her own experience being raised by a grandmother and then becoming that grandmother’s caregiver.

Sen. Collins paraphrased former First Lady, Roslynn Carter, saying, “Chances are that, sooner or later, we will all either be caregivers or someone who needs one .” She went on to say, “The RAISE Family Caregivers Act will launch a coordinated, national strategic plan that will help us to leverage our resources, promote innovation and promising practices, and provide our nation’s family caregivers with much-needed recognition and support.”

RAISE stands for Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act. Its purpose is to develop a national strategy for caregiver support. Sen. Collins explained, The RAISE Family Caregivers Act will launch a coordinated, national strategic plan that will help us to leverage our resources, promote innovation and promising practices, and provide our nation’s family caregivers with much-needed recognition and support.”

It is wonderful that caregivers, having been invisible for so long, have made it into the national awareness. Certainly, thanks for that goes to AARP, who has been “showcasing” caregivers for the past several months in their publications and helped advocate for this legislation. Through the efforts of AARP and others, legislators have finally taken notice.

The RAISE Family Caregivers Act sets the stage for the developing of a national strategy to support family caregivers. The Dept. of Health and Human Services (HHS) would establish an advisory council to advise on how to recognize and support family caregivers and then create a national strategy, to be updated at least every two years.

In reviewing S.1719, the RAISE Family Caregivers Act, I have not seen anything about funding efforts. Additionally, although identifying options for respite is mentioned, the definition of respite is not addressed. Currently, it means services provided to the person with the diagnosis.

The advisory council and HHS have up to 18 months to develop an initial strategy, which will then be revised “not less than every two years,” and the act expires on Dec. 31, 2015.

This is a great first step in terms of awareness of the importance of taking care of our caregivers. But it is short term (10 years), not funded, and only recommendations. As founder of Nancy’s House, it is my hope that this is the first step of a journey that will bring national focus, support, training and respite to all caregivers, who do so much to maintain their loved ones and, coincidentally, our national health care system.

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About Elissa Lewin

Elissa Lewin is a Licensed Psychologist and a Licensed Marriage and Family Therapist. She has maintained a private practice outside of Philadelphia for 25 years. Her own experience as a caregiver led to her founding Nancy’s House, a comprehensive respite program for family caregivers. www.nancy's-house.org

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