How the US Will Revamp Family Caregiver Support

Without family caregivers, many hospice patients would be unable to receive care in their homes.

To help keep patients at home — the lowest-cost setting of care — the federal government recently unveiled a National Strategy to Support Family Caregivers, which has more than two decade’s worth of advocacy behind it.

The U.S. Department of Health and Human Services (HHS) announced the strategy late last month. It includes close to 350 federal programs to assist the more than 53 million Americans who care for seriously ill or disabled loved ones in their homes, according to the U.S. Administration for Community Living (ACL), an HHS sub-agency.

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The strategy also contains 150 recommendations for state and local government, as well as the private sector.

Support for family caregivers is an important step towards controlling health care costs, particularly for Medicare and Medicaid, according to Greg Link, director of the Office for Supportive and Caregiver Services at ACL.

“The value of family caregiving is estimated to be about $470 billion per year. If these family caregivers were to suddenly disappear, the health care system as we know it likely would be on the hook for that additional $470 billion of support and service,” Link told Hospice News. “We have an opportunity through some of the data, research, and actions that are in the strategy to get closer to understanding the real dollar value of caregiving, and also what a relatively small investment in supporting caregivers could ultimately save the health care system.”

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The strategy is built on five pillars: increasing awareness of and outreach to family caregivers, advancing partnerships with those individuals, ensuring their financial and workplace security, strengthening services and support, and expanding research and evidence-based practices.

HHS has opened up a public comment period on the strategy to solicit feedback from stakeholders, meaning that hospice and palliative care providers have an opportunity to give input. The department plans to update the policies every two years and will use that feedback to shape some of those changes.

Building the strategy

ACL spearheaded the development of the strategy for the federal government, which has its roots in longstanding stakeholder advocacy and a series of legislative actions, Link indicated.

The concept of weaving these and future programs into a unified national strategy germinated in a 2016 National Academies of Sciences report, Families Caregiving for an Aging America. Congress took the academies’ recommendations to heart and in 2018 passed the Recognize, Assist, Include, Support, and Engage [RAISE] Family Caregivers Act, directing HHS to develop the strategy.

This is not to be confused with the immigration-focused RAISE Act that was introduced during the same time period.

Among the stakeholders involved in the strategy’s development was the National Academy for State Health Policy (NASHP). Link told Hospice News that the organization was instrumental to this process. In addition to public advocacy and education, NASHP operates the Family Caregiver Resource Center established through the 2018 legislation.

The role of the states

Caregiver support has been an emerging priority at the state level as well, even more so during the COVID-19 pandemic. In light of the limited access to patients that providers had to contend with during the height of the outbreak, widespread staff shortages meant even more reliance on family members, according to Wendy Fox-Grage, senior policy fellow for NASHP.

“States have really been called on to address those crises during this time,” Fox-Grage told Hospice News. “States have received pandemic-related funding from the federal government, and we’ve been seeing them allocate some of those funds for this in particular because family caregivers have really been providing this care, particularly in the home.”

Implementation of the national strategy will require an all-hands-on-deck approach Fox-Grage explained — meaning agencies at all levels of government, health care providers, other businesses, and community organizations.

Providers have an essential role, especially considering that they have the most direct and frequent contact with patients and families. Helping support caregivers or connecting them with additional resources can help ensure that patients can continue to receive goal-concordant care in their homes.

“There’s a lot of great opportunity for providers — especially during any kind of care transition, like after a hospital discharge — to make sure that the family member understands that they need to provide some of these really complex medical care tasks,” Fox-Grage said. “Oftentimes providers don’t think of the family as part of the care team. Rarely did we hear from family caregivers that they were ever asked about their own needs, and so even just asking them what they need goes a really long way.”

Existing government caregiver policies

At the federal level, the first major commitment to caregiver support was the establishment of ACL’s National Family Caregiver Support Program through the 2000 reauthorization bill for the Older Americans Act.

Over the years, other caregiver programs followed, including development of the Lifespan Respite Care Program at ACL in 2006. In 2010, the U.S. Department of Veterans Affairs also implemented its own caregiver support initiative.

State and local governments have also enacted a range of policies on caregiver support. Some of these involve access to respite care and services from community health workers. Some states have funded caregiver counseling programs, disseminated information, and implemented 1915(c) waivers to provide a range of home and community-based services to targeted Medicaid populations, according to NASHP.

NASHP through its resource center created a document to serve as a roadmap to help states design their approaches to these issues.

“States can pass family leave laws. There’s the Family Medical Leave Act, but states can go beyond that federal law and enhance family leave requirements. They can also establish tax credits for caregiving expenses,” Fox-Grage said. “States also are regulators of various services like home- and community-based services and they have great flexibility on how they can use their Medicaid dollars. There’s actually quite a bit of state funding as well.”

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