ARLINGTON, VIRGINIA - ADvancing States recognizes family caregivers as an integral component of the nation’s long-term services and supports system, as roughly 90% of the estimated 53 million caregivers in America are caring for a relative.^[1] Family caregivers provide dedicated care to loved ones that enable them to remain at home instead of receiving care in an institution, promoting independence, community participation, and choice and control. Family caregivers often put the care of the individual first, juggling endless schedules, employment, and their own physical and mental health needs. For these reasons and more, ADvancing States applauds the RAISE Family Caregiving Advisory Council’s Initial Report to Congress and the 26 thoughtful recommendations found within the report.

The association is proud of our members’ contributions toward the work of the RAISE Family Caregiving Advisory Council, including providing input and information to the Council at the ADvancing States Spring Meeting and HCBS Conference. States shared thoughts and feedback about outreach and marketing for services and supports, grandparents raising grandchildren, caregiving for dual eligibles, and caregiving for family members with Alzheimer’s disease and related dementias. This information was used to help formulate recommendations in the report.  

ADvancing States appreciates the report’s whole-person approach to family caregiver needs and is pleased to see equity and cultural considerations included in the recommendations. “We understand the need for equitable approaches to care and family caregiving,” Executive Director Martha Roherty stated, adding “which is why we have made it a priority to pull states and stakeholders together to address these issues. The recommendations in the RAISE report take in to account the diverse needs of family caregivers, underscoring that a one-size-fits-all approach to family caregiving just doesn’t work. The way in which we think about person-centered care for individuals should also extend to the support provided to family caregivers. While experiences of providing care may be similar, the needs of individual caregivers can vary greatly.”

Curtis Cunningham, ADvancing States Board President, shared “The daily sacrifices of family caregivers enable millions of older adults and people with disabilities to remain in their homes and communities. The individualized care provided and selflessness of family caregiving emphasizes the invaluable nature of this work.”

The recommendations in the report clearly convey the importance of family caregivers and communication. Receiving the right information and access to services and supports for family caregivers at the right time can make all the difference to someone on the verge of burnout. ADvancing States is proud to support state initiatives that strengthen systems of access to information, assistances, counseling, and services for caregivers.  

Our hope is Congress will take meaningful action to support these important recommendations. The future of HCBS is dependent on the mental, physical, social, and emotional health of the nation’s family caregivers. We thank the RAISE Family Caregiving Advisory Council’s committee members for their time and efforts in bringing awareness and critical thought to this issue. 

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