Caring for the caregivers

April 28, 2023

Written by
Lindsey Berger

As the population of the United States ages and reliance on family caregivers increases, the need for action to support those family caregivers has never been greater.

“The challenges and rewards of family caregiving are much more than any research study has ever captured. Families struggle, they look for help and support, they laugh, they cry. They do all of this for the family member that has the greatest need. Yet, the demands of work and the needs of other family members continue. Balancing all of the demands can be overwhelming.”
-Alan Stevens, Ph.D., family caregiver & RAISE Family Caregiving Advisory Council Co-chair.
As the population of the United States ages and reliance on family caregivers increases, the need for action to support those family caregivers has never been greater. The statistics are alarming. Nationally, the older adult population is growing while the workforce to care for them is shrinking. Family members are being called upon to fill the gap, which takes a significant toll on the family’s finances, employment, and emotional well-being. Unsurprisingly, a Harvard Business School Report explains that roughly 70% of employee-caregivers report struggling at work; they take time off, decline promotions, reduce hours or stop working altogether. The financial impact is devastating; annually, employees collectively lose up to $3 trillion in wages and benefits while employers lose $17-33 billion to absenteeism and turnover.  

The alternative to family caregiving is not much better, with the average annual cost of a single room in a nursing home in the United States coming in at well over $100,000, and in some states such as New York, costing upwards of $150,000.  The alternative to family caregiving for children being cared for by non-parental family members would leave millions of children in the welfare system, being cared for by strangers. The cost of care is astronomical, but the qualifications for assistance programs such as Medicaid are extremely strict, and the assistance they provide is often not nearly enough, leaving the average working middle class family in a dangerous predicament.  

Furthermore, these startling statistics are purely financial in nature, and fail to account for the non-financial costs of being a family caregiver, including stress, depression, isolation, poor self-care and resulting declining physical health, and overall decreased quality of life – costs that cannot even be quantified.  

In an effort to address the needs of these crucial caregivers and better support the role they play in their families and society as a whole, President Biden recently issued a broad-reaching Executive Order. Though the order is intended to impact far more than just family caregivers, meaningful efforts are included “to improve jobs and support for caregivers, increase access to affordable care for families, and provide more care options for families.”

While the Order acknowledges that more must be done by Congress  to address the targets of the Order, there are meaningful steps taken to provide support for family caregivers.  By way of example, the Order directs the Secretary of Health and Human Services(“HHS”) to:

·      test a model of providing critical, short-term relief to caregivers of family members with dementia;
·      further support caring for family members at home, instead of in a facility; and
·      make sure that caregivers are better prepared both in terms of the care that will likely be needed and how to provide that care.

In addition, the Order seeks to increase knowledge and information about caregivers (both family and professional) by requiring the Secretary of Labor and HHS to “in consultation with relevant agencies and external experts and organizations, jointly conduct a review to identify gaps in knowledge about the home and community-based workforce serving people with disabilities and older adults” , which will include, among other things, evaluating, analyzing, and expanding the relevant data sources.  This report must be publicly released no later than April 2024.  It is intended that the availability of this additional information will allow more targeted and specific action – ideally in the form of legislation, such as New York’s Senate Bill S1062, which would establish the office of the caregiving economy – to assist those who care for the most vulnerable members of the population.

The recent Executive Order comes following the 2022 National Strategy To Support Family Caregivers Report (developed by The Recognize, Assist, Include, Support, and Engage (RAISE) Act, The Family Caregiving Advisory Council, and The Advisory Council to Support Grandparents Raising Grandchildren), a call to action was put forth, including two dozen legislative and policy related strategy suggestions that could be implemented, to help family caregivers. (See Legislative or Policy Change table in the 2022 Report, Table 1 Page 22).  President Biden’s Order is an aggressive and enthusiastic step forward towards meeting the strategic goals set forth in the Report.      
The Report also put forth a call for societal changes and goals to better support family caregivers, including:
·      Increasing awareness and outreach to family caregivers;
·      Strengthening services and supports for caregivers (including innovative tools and technologies to assist them in their roles); and
·      Ensuring their financial and workplace security.  

The initiatives in the Executive Order demonstrate that things are at least moving in the right direction for family and non-family caregivers alike, although more work must be done to care for the caregivers.  Apiary will continue to track these policy changes and other developments, and looks forward to being able to report on new legislation and societal initiatives designed to address the needs of caregivers in the US.  
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