On January 22, 2018, the President signed into law the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act. Although RAISE is not accompanied by new funding, it is a step in the right direction in recognizing the important role family caregivers play in the care of people living with chronic illnesses, including COPD.
In the United States, it is estimated that more than 40 million unpaid caregivers[i] spend an estimated 30 billion hours annually caring for older family and friends, with uncompensated costs in excess of $500 billion.[ii] RAISE shines a light on these workers and calls on the U.S. Department of Health and Human Services (HHS) to work with federal agencies and an advisory council to create a national strategy to support family caregivers.
The RAISE Act has two main features:
Development of a National Family Caregiving Strategy
The Act calls on HHS to develop (within 18 months), update, and sustain a national strategy that considers myriad issues that affect family caregivers. These include:
- Promoting greater adoption of person- and family-centered care in all health and long-term services and support settings, with the service recipient and family caregiver at the center of care teams;
- Assessment and services planning involving caregiver
- Promoting greater adoption of person- and family-centered care in all health and Long-term and supportive services settings, with the person and the family caregiver (as appropriate) at the center of care teams
- Assessment and service planning (including care transitions and coordination) involving care recipients and family caregivers
- Information, education, training supports, referral, and care coordination
- Respite options for caregivers
- Financial security and workplace issues
Establishment of a Family Caregiving Advisory Council
A Family Caregiving Advisory Council will be convened to support the development of the National Family Caregiving Strategy and advise the department on recognizing and supporting family caregivers. Members of this Council will include family caregivers, older adults with long-term services and support needs, health care and social service providers, and other key stakeholders in the caregiving community. The Council will also include federal representatives from the Centers for Medicare & Medicaid Services, Veterans Affairs, the Administration for Community Living, and other relevant agencies.
The Family Caregiving Advisory Council’s responsibilities will include (a) an inventory and assessment of all federally-funded funded efforts to recognize and support family caregivers and the outcomes of these efforts, (b) recommendations to improve and better coordinate these federal efforts, (c) the identification of challenges faced by family caregivers, and (d) and evaluation of how family caregiving impacts Medicare, Medicaid, and other federal programs.[iii]
Respiratory Health Association is all too familiar with the essential role that family caregivers play in the lives of their loved ones living with chronic lung disease. We are encouraged by the passage of the RAISE Act and the promise it may hold for the millions of families affected by respiratory diseases and other conditions. We will monitor the implementation of the new law and contribute the experiences of our supporters to assure that the mandates of this new law will be fulfilled.
[i] https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
[ii] https://states.aarp.org/family-caregivers-provide-522-billion-in-uncompensated-care-per-year/
[iii] H.R. 3759. https://www.congress.gov/bill/115th-congress/house-bill/3759