On January 22, 2018, President Donald J. Trump signed House Bill H.R.3759, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017 , which received bipartisan congressional support, as public law no. 115–119. The RAISE Act authorizes the secretary of the Department of Health and Human Services (DHHS), in partnership with other federal agencies, to establish and maintain a family caregiving strategy within 18 months of the signing of the act into law by President Trump.
Over sixty stakeholder organizations across the nation endorsed the bipartisan congressional legislation including AARP, Alzheimer’s Association, American Geriatrics Society, Caregiver Action Network, Family Caregiver Alliance, National Alliance for Caregiving, National Council on Aging, National Disability Rights Network, Paralyzed Veterans of America, Rosalynn Carter Institute for Caregiving, and Michael J. Fox Foundation for Parkinson’s Research. Librarians, library managers, and professional library associations will want to study the act, keep current with the family caregiving strategy as it evolves, and be proactive by offering innovative library programs and outreach services to family caregivers and their care recipients.
The RAISE Family Caregivers Act grew out of a series of recommendations—proposed by a panel of experts in geriatrics, gerontology, psychology, and public policy—that were published in the National Academies of Sciences, Engineering, and Medicine landmark report, Families Caring for an Aging America . This report provided a rationale, with extensive data and current best practices, for developing a strategy to increase support to meet the needs of and to coordinate health and long-term care (LTC) services to over forty-three million family caregivers and their care recipients across the United States.
The federal legislation was first introduced in 2017 as S.1028  by Senators Susan M. Collins (R-ME) and Tammy Baldwin (D-WI) on May 3, passed the Senate on September 26, and was referred to the House Committee on Education and the Workforce on September 27. Representatives Gregg Harper (R-MS) and Kathy Castor (D-FL) sponsored H.R.3759, which passed the House on December 18. The legislation requires DHHS to use its current operating budget to carry out the act, which expires three years after its enactment date.
Important provisions of the RAISE Family Caregivers Act cover:
- formation of a diverse advisory council, with representatives of family caregivers, older adults who require LTC services, disabled adults, health and social service providers, LTC providers, employers, paraprofessional workers, state and local officials, accreditation bodies, veterans, and other experts and advocacy organizations engaged in family caregiving;
- joint development of the family caregiving strategy with the DHHS secretary and heads of other appropriate US federal agencies with a final annual report issued in line with content guidelines outlined in the act; and
- a family caregiving strategy report posted publicly on the DHHS Internet website with annual report updates submitted to appropriate congressional committees and state agencies responsible for carrying out family caregiver programs identified in the strategy.
Important goals of the family caregiving strategy outlined in the act include:
- promoting greater adoption of person- and family-centered care in all health care settings and LTC services;
- assessing federal family caregiving programs to ensure the coordination and management of care transitions;
- providing information, education, and training for family caregivers to include hospice care, palliative care, and advance planning services;
- offering respite care options for family caregivers;
- identifying ways to increase financial security for family caregivers;
- encouraging workplace policies to help family caregivers continue working; and
- addressing disparities and meeting the needs of the diverse US caregiving segment in local communities.
This new congressional legislation is an important first step in legitimizing the identity and political “voice” of caregivers and offering additional support to meet their needs for information, autonomy, and daily assistance, as discussed by health care policy analysts Kendall and Lampert . Family caregivers constitute the “backbone” of our nation’s LTC system and provide over $470 billion annually in unpaid home health services to their loved ones.
In partnership with health care and human services professionals, family caregivers ensure the health and safety of the country’s diverse population of disabled adults, veterans, and older adults who are afflicted with multiple chronic diseases such as Alzheimer’s disease, cancer, chronic obstructive pulmonary disease, diabetes, heart disease, high blood pressure, mental illness, multiple sclerosis, pain, Parkinson’s disease, and stroke. The American Society on Aging’s Board of Directors urged President Trump to quickly sign this “common-sense” bill into law to support family caregivers nationwide .
- Harper R, Castor K. RAISE family caregivers act, H.R.3759, 115th Congress, 1st session; 19 Dec 2017 (Available from: <https://www.congress.gov/115/bills/hr3759/BILLS-115hr3759rfs.pdf>.[cited 10 Jan 2018].)
- Schultz E, Eden J, eds. Families caring for an aging America. National Academies of Sciences, Engineering, and Medicine. Washington, DC: National Academies Press; 2016. (Available from: <https://www.nap.edu/catalog/23606/families-caring-for-an-aging-america>. [cited 10 Jan 2018].)
- Collins SM, Baldwin T. RAISE family caregivers act, S.1028. 115th Congress, 1st session; 27 Sep 2017 (Available from: <https://www.congress.gov/115/bills/s1028/BILLS-115s1028rfh.pdf>. [cited 10 Jan 2018].)
- Kendall D, Lamper J. Family caregivers need a voice in our political debate. The Hill [Internet]. 29 Dec 2017 [cited 1 Jan 2018]. <http://thehill.com/opinion/healthcare/366724-family-caregivers-need-a-voice-in-our-political-debate>.
- American Society on Aging. U.S. Senate passes RAISE family caregivers act [Internet]. The Society; 9 Jan 2018 [cited 12 Jan 2018]. <http://www.asaging.org/blog/us-senate-passes-raise-family-caregivers-act>.