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Supporting Family Caregivers: A Key Issue for ACL and for Our Time

November 20, 2023
Alison Barkoff

Performing the duties of ACL Administrator and Assistant Secretary for Aging

Each year, more than 53 million Americans provide a broad range of assistance to support the health, quality of life, and independence of an older adult or person with a disability. Another 2.7 million grandparents ­— and an unknown number of other kinship caregivers — open their arms and homes each year to children who cannot remain with their parents.

Family caregivers are the backbone of the nation’s system of long-term care — replacing the support they provide with paid services would cost an estimated $600 billion each year. The number of family caregivers continues to increase as the populations of disabled people and older adults grow, and the opioid crisis and other issues create thousands of new “grandfamilies” each year.

When family caregivers do not have training, support, and opportunities for rest and self-care, their health, well-being, and quality of life often suffer. Their financial future can also be put at risk; lost income due to family caregiving is estimated to be a staggering $522 billion each year. And if they are unable to continue to provide care, nursing homes and other facilities, or foster care, can become the only option for the people they support. This makes supporting family caregivers not just a moral and economic issue, but an issue critical to community living.

It’s fitting that we celebrate National Family Caregivers Month during the same month we celebrate Thanksgiving — we are all truly thankful for family caregivers and the support they provide. But family caregivers need more than our gratitude. They also need — and deserve — a comprehensive system of support.

Remembering Rosalynn Carter 

When former First Lady Rosalynn Carter passed away yesterday at the age of 96, we lost a longstanding advocate for family caregivers, mental health, and women’s rights. Famously quoted as saying, "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers,” she was the first national leader to passionately champion support for family caregivers. She created an awareness of the often-overlooked needs of family caregivers, was an early voice in recognizing caregivers as a crucial part the public health system, and founded the Rosalynn Carter Institute for Caregivers, which promotes the health, strength, and resilience of America’s family caregivers. As President and First Lady Biden said in their statement, she inspired a nation and the world, and our lives are better, fuller, and brighter because of her life and legacy.

The First-Ever Family Caregiving Strategy

For over two decades, ACL has played a leading role in supporting family caregivers through our National Family Caregiver Support Program, the Alzheimer's Disease Programs Initiative, and the Lifespan Respite Care Program. In the past few years, that work has accelerated across ACL with new initiatives and programs to support caregivers of older adults and people with disabilities of all ages, as well as grandparent caregivers.

In 2018, recognizing the important and growing role of family caregivers, Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren (SGRG) Act, and directed HHS to develop a national family caregiving strategy. ACL has been thrilled to lead that effort, working together with two advisory councils made up of caregivers, people receiving support, and experts and 15 federal agencies with programs that can assist family caregivers and the people they support. Last September, after a year of close collaboration and extensive stakeholder and public engagement, we delivered to Congress the first ever National Strategy to Support Family Caregivers.

The national strategy is groundbreaking, holistic, and both visionary and concrete. One major component of the strategy is ensuring the federal government is doing all it can to support family caregivers and the people they support. Fifteen federal agencies made nearly 350 commitments, ranging from launching new caregiving initiatives, to changing policies, to addressing problems in existing programs. These are not just ideas but actions the agencies committed to do. And we are holding ourselves accountable. One year after the release of the strategy, nearly three-quarters of those actions are already in progress or completed.

Importantly, the strategy recognizes that that federal agencies alone cannot address the issue — it will take an all of society approach. That’s why the strategy also includes more than two dozen recommendations for legislative and policy changes, like federal legislation to improve paid family leave policies and expand access to services, along with over 150 recommendations that can be implemented by states, communities, businesses, philanthropy, and others.

The strategy is a living document, one that will be adapted and updated as we make progress on our goals and as we learn even more. We swore in the new members of the advisory councils in July, and the councils met for the second time in September. At that meeting they started to dive into the analysis of the public comments we received on the strategy. They also heard updates from the federal partners about their progress on the strategy's actions. All of that will inform the update of the strategy that the councils will work on over the next year.

In addition, earlier this year we were excited to announce a $20 million initiative to support implementation of the strategy. Through this initiative, ACL is awarding five four-year grants to support the development of state, community, and tribal family caregiver support programs aligned with the strategy’s principles and recommendations. The first four grants were awarded in September. Applications for the last grant, which will focus on strengthening financial and workplace security for family caregivers, are due December 11.

Interconnectedness Between Family Caregivers and the Direct Care Workforce

One issue that is prominent in the national strategy — and that comes up in nearly every conversation I have about caregiving — is the inextricable link between paid caregivers and family caregivers. People with disabilities and older adults often depend on services provided by direct care workers to live in the community, and family caregivers often depend on those same professionals for respite care. However, getting these services can be difficult — or impossible. For decades, service providers have been struggling with a workforce shortage due to low pay, little respect, lack of benefits, and limited advancement opportunities. That shortage reached crisis levels during the pandemic. Today, some states report nearly 50 percent employee turnover rates, and nearly 80 percent of service providers are declining referrals or cutting services despite growing demand.

When it is harder to access paid services, families are forced to take on even more. And when family caregivers become overwhelmed and paid services are not available, people who need assistance often have no option except moving to a nursing home or other institution; people who want to leave these facilities are forced to stay; and the health and safety of those who live in the community is put at risk.

That’s why ACL’s work to support family caregivers is complemented by our focus on stabilizing and strengthening the direct care workforce. Last year, we created the Direct Care Workforce Strategies Center to improve recruitment, retention, training, and advancement of direct care professionals. Later this year, the Strategies Center will launch a website to serve as a national hub of resources and best practices. When fully operational, the center also will support states in developing and leveraging partnerships, including among aging, disability, Medicaid, and workforce agencies; providers of direct care services; and disability, aging, and labor advocates. We also are working with colleagues across HHS and the Department of Labor to identify key priorities, review data, and recommend ways to fill critical gaps in knowledge about the direct care workforce.

Unprecedented Support and Momentum

We now have an incredible opportunity to strengthen the care infrastructure for disabled people and older adults — both family caregivers and the paid direct care workforce.

First, we have unparalleled support from both President Biden and HHS Secretary Becerra. President Biden called out the needs of America’s caregivers in his State of the Union address this year and emphasized the importance of solidifying the care infrastructure to support and strengthen our nation’s families. His recent Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers reinforced this further. HHS Secretary Becerra, himself a family caregiver, also has championed the need for better caregiver supports. In July, he launched an HHS-wide initiative to support, strengthen, and grow the workforce — including direct care professionals — that provides health care and related services.

We also have a new — and extraordinary — momentum. The COVID-19 pandemic brought the need to support family caregivers to the forefront of conversations at dining room tables and board rooms across the country. Coalitions, such as the Care Can’t Wait campaign, have formed to advocate for resources and change at state and national levels. The National Strategy to Support Family Caregivers was the result of an unprecedented collaboration involving many agencies, organizations, and individuals in both government and the private sector — and stakeholders have organized advocacy efforts around it, like the Act on RAISE campaign. I recently had the privilege of joining a briefing for members of Congress organized by the campaign, and it was so exciting to see the level of bipartisan interest in our issues.

There also is international momentum. Last year, I had the honor of speaking at a convening of the U.N. Human Rights Council focused on caregiving issues. And just last week, I participated in the first-ever Canadian Caregiving Summit, which convened as Canada prepares to develop its own national caregiving strategy.

This work has really been about creating a movement — partnerships that erase old boundaries where we work together to make sure that all types of caregivers and people receiving care can get what they need and the respect they deserve.

We All Have a Role to Play

The responsibility for improving caregiver support touches every sector of our society — from federal, state, and local government, to business and philanthropy, to advocacy organizations, and to each of us. After all, as Rosalynn Carter said, caregiving is a universal issue — nearly all of us will either need or be a family caregiver at some point in our lives, and many of us will experience both.

That’s why I am so thankful for how far we have come and for the opportunities that lie before us. I am also grateful for the collaboration of so many people and organizations working to transform the way this nation supports its caregivers and the people who receive their support — and for the real changes we are seeing.

So, as we celebrate National Family Caregivers Month, I am calling on everyone to join us. I am excited and optimistic about what we can achieve together — and our work will only become more important as populations age, people with disabilities are living longer, and more people than ever want to live in the community and age in place. Building the care infrastructure — both supporting family caregivers and strengthening the direct care workforce — is THE issue of our time for the disability and aging communities and for advancing community living.

Last modified on 05/15/2024

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