Policy Advancements in Family Caregiving

2021 Policy Advancements in Family Caregiving

In celebration of National Family Caregiver Month, we would like to highlight some of the policy advancements that are underway to better support caregiving families. Although the COVID-19 pandemic has been especially challenging for family caregivers, it also brought national attention to the challenges caregivers experience day-to-day. Despite enormous suffering caused by this pandemic, a “silver lining” is that policymakers are now more tuned in than ever to the needs of family caregivers. We would like to highlight a few recent successes.

The RAISE Family Caregiving Council’s Initial Report to Congress

In September, the Recognize, Include, Support, and Engage Family Caregiving Advisory Council submitted its initial report to Congress. The RAISE Advisory Council was convened in 2019 to advise and provide recommendations on policies to better support family caregivers. The Council is composed of family caregivers, professionals, and representatives from relevant government agencies. The initial Advisory Council report was informed through multiple efforts to gather information, including listening sessions with family caregivers and over 1,600 public comments.

The report includes 26 recommendations to improve support for family caregivers at the policy level. We highlight several exemplar recommendations that we at the Caring for the Caregiver strive to uphold to better serve families in our community.

1.      Increase access to meaningful and culturally relevant information, services, and supports for family caregivers. Did you know that Caring for the Caregiver is offering more Spanish-language and culturally-tailored education and socialization programs than ever? Since 2019, Caring for the Caregiver has offered a monthly bi-lingual Memory Café (SA Amigos) where families affected by dementia can socialize in a welcoming environment. In June 2021, we also began to offer our first all-Spanish Essentials of Caregiving lecture series. On November 18th, we will partner with AARP Texas for a second all-Spanish education session that will focus on legal and financial planning. You can register for this event at the link below: https://www.eventbrite.com/e/presentacion-en-la-que-se-discutiran-cuestiones-legales-y-financieras-tickets-195882468737?aff=ebdsoporgprofile

2.      Expand the use of vetted volunteers and volunteerism as a means of supporting family caregivers. When the COVID-19 pandemic first began in March 2020, you may have received a call from a Caring for the Caregiver team member. Based on the positive feedback we received from these calls, we decided to make our Caregiver Reassurance call permanent through the help of our outstanding UT Health San Antonio health science students. Before being assigned to families, students undergo a multi-part training program, including information about local resources. Students check in with families on a regular basis to identify unmet needs and to provide “a listening ear.” Students also benefit by learning about the needs and challenges of caregiving families. Thank you to all who have participated over the last year and a half. If you would like to participate in the next cohort, please contact Sara Masoud, MPH: masoud@uthscsa.edu

3.      Increase the availability, and use of, financial education and planning tools for family caregivers.  COVID-19 had a major effect on the financial wellbeing of family caregivers, many of whom experienced unemployment and are now affected by rising inflation, such as when purchasing groceries and other daily necessities. To address caregivers’ needs for financial support and planning, in 2022, Caring for the Caregiver will begin to offer a multi-part financial education program called CONFIDENCE. This 5-week program will be offered online over Zoom and will cover topics including juggling employment and caregiving, navigating community resources to lower out-of-pocket care costs, managing someone else’s money, and more. We plan to begin to offer the program in Spring 2022. If you would like to stay informed about when this program will be offered, please email Kylie Meyer, PhD at meyerk1@uthsca.edu.

Caring for the Caregiver is looking forward to the final recommendation by the RAISE Caregiving Council, and remain optimistic that the Council recommendations will help us to better serve families in our community and others.


Paid Family Leave

Another exciting policy development this year is the possibility of a national Paid Family Leave (PFL) program as a part of the federal Build Back Better legislation package. PFL allows employees be paid while taking time off work to provide care, such as to a child or a sick loved one. Currently, approximately 60% of workers have access to up to 12-weeks of unpaid leave as a part of the Family Medical Leave Act (FMLA). However, taking time off of work for FMLA may be cost prohibitive to some families. In response, several states and employers are now offering paid leave policies to better support caregiving families. In 2021, UT Health San Antonio became one of these organizations. Nationally, only 23% of U.S. workers have access to paid leave through their employer, which can make it difficult to balance employment and caregiving.

The exact structure of a federal Paid Family Leave program is not yet known, and is likely to continue to evolve as the legislation undergoes budget reconciliation. Initially, President Biden proposed a 12-week leave program in the spring of 2021. During recent budget negotiations, this was negotiated down to a 4-week program, removed during negotiations, and, as of this writing, is being re-introduced. To keep up with changes, consider subscribing to the Family Caregiver Alliance’s Public Policy Digest newsletter:  https://www.caregiver.org/about-fca/news-press/caregiving-policy-enewsletter/

There are many other policy “wins” to celebrate for family caregivers this year. Congress continues to provide funding to the National Institutes of Health to support research on Alzheimer’s Disease and Related Dementias (ADRD). Funding such as this helped to support the recent designation of the UT Health San Antonio Biggs Institute on Alzheimer’s and Neurodegenerative Disease as a National Institute on Aging Alzheimer’s Disease Research Center. This is a major success for our community that will support families affected by Alzheimer’s disease and related dementias. At a local level, the Dementia Friendly San Antonio Advisory Council ushered in renewed commitment from the City Council, who issued a proclamation reaffirming San Antonio as a Dementia Friendly Community.

Remember, you can let policymakers know what you need as a family caregiver. Caregivers provide $470 billion worth of care each year and are the backbone of our long-term service system. Learn who your representatives are and let them know your opinions about policies that can support you in this critical role.

Find out who represents you (state and federal): https://wrm.capitol.texas.gov/home

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