Federal Agencies are Delivering on Whole of Government Approach to Care

Sarah Gilliland

It's been a year since the Biden Harris administration announced an Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers and declared April "National Care Worker Month." As activities wind down for 2024's "Month of Action on Care", it's a good time to reflect on some key accomplishments in the last 12 months, and look forward to what might come next if we keep care on the map.

The Executive Order on Care

Caregiving is a commonplace and innately human activity that can be deeply gratifying, but it also saps significant time, energy, and financial resources from people who provide it. Paid caregivers are undercompensated, and many family caregivers forgo paid work to meet the demands of their "second shift." Meanwhile, people needing care at home advocate for services to help them live full and independent lives, but waitlists are common and experiences accessing care vary across states. Whether you need care or provide care: burnout is ubiquitous, and the collective strain endures.

Last year, the first ever Executive Order addressing the caregiving crisis was issued. A previous blog post explored its parameters and potential. While the order doesn't appropriate new funding, it established a care management agenda for the federal government through 54 directives to agencies to streamline the experience of providing and receiving care.

Reporting Out on Care E.O. Progress

Following a series of activities and convenings focused on care worker recognition in April, the White House released a fact sheet on implementation of the Care Executive Order and the administration's care agenda.

The good news: about half of the directives have seen progress.

We've created a table illustrating how federal agencies are working to meet the E.O.'s priorities: increasing compensation and job quality for care workers, increasing access to care for workers delivering federally assisted projects, and expanding options for families by building the supply of care.

Source: New Practice Lab analysis of Executive Order 14095, "Increasing Access to High-Quality Care and Supporting Caregivers" and a subsequent White House fact sheet on progress.

By clicking "view larger version", the table can be filtered and sorted by agency, impacted communities (care workers, families, people needing care), and types of help (improving quality of care, creating safe and fair workplaces, etc). This list of activities is not exhaustive but illustrates the kind of work that is being undertaken to improve the care landscape for all Americans.

While all of these initiatives can help caregivers, some of the most significant outcomes of the E.O. may result from rulemakings, primarily Improving Child Care Access, Affordability, and Stability in the Child Care and Development Fund, and more recently Ensuring Access to Medicaid Services. These rules go far to address some of the broad goals introduced by the Care order- notably, increasing care supply and improving job quality for caregivers- but go a step further in addressing aspects of user experience and burden.

How the Care Executive Order Helps Across Generations

Caring for Olders Adults and People with Disabilities

The Challenge

About 1.2 million Americans currently live in nursing homes, with another ~800,000 residing in assisted living facilities. This is just a fraction of older adults, the vast majority of whom are "community dwelling," that is, living in their homes. An estimated 85% of people living with dementia in the U.S. are community dwelling. Additionally, a New York Times/KFF analysis found that adding seniors experiencing difficulty with two or more activities of daily life like eating or dressing brings the number of people potentially needing care to 8 million. Of those, they estimate that three million have no help at all.

Among the poorest Americans needing home health support, the need is particularly dire. Almost 700,000 people are on waitlists to receive home care services through Medicaid. States have used American Rescue Plan dollars in innovative ways to recruit and retain workers in this critical sector, and these funds increased benefits and compensation for workers across all 50 states. It won't be possible to fully bridge gaps without additional funding, but the Executive Order does enable greater transparency and accountability for how Medicaid home care dollars are spent.

How the Federal Government is Responding

One goal of the Care Executive Order is to help build the supply of care, thus increasing choices for families. As part of that effort, the E.O. encouraged the Department of Health and Human services to make a rule improving access to home-and-community-based services under Medicaid. On April 22, 2024, the Center for Medicare and Medicaid Services (CMS) issued a final rule, "Ensuring Access to Medicaid Services," that addresses this call directly. The rule takes a phased approach to ensuring fair compensation for home health workforce, starting with improved transparency and laddering up to a minimum share of Medicaid payments for worker compensation. States will be required to:

• Publish the average hourly rate paid for personal-care, home-health aide, homemaker and habilitation services ("home care services") every two years.
• Report on readiness to collect data on the percentage of Medicaid payments for home care services that go to workers by 2027
• Report on the percentage of Medicaid payments for home care services that go to workers by 2028
• Ensure that 80% of Medicaid payments for home care services go to workers by 2030

Increasing compensation for the home care workforce can help reduce turnover in a field with demand that will only grow in coming years. Retaining a skilled home care workforce is essential to providing high quality care for people who need it.

Notably, the rule goes beyond addressing the specific asks of the Care E.O., addressing the issue of administrative burden or "the time tax" elevated in an earlier Executive Order, "Transforming Federal Customer Experience and Service Delivery to Rebuild Trust in Government." States are now required to report on waitlists for home care services, assess wait times for services, and report on quality measures. All states will be required to have a grievance process to address the concerns of all participants in Medicaid Home and Community Based Service (HCBS) programs. By reorienting HCBS service delivery to be more responsive to the needs of people providing and receiving care, CMS has an opportunity to reduce the trust gap in government and significantly improve life experience of people needing care.

Caring for Young Children

The Challenge

The U.S. child care sector struggled for years before the Covid pandemic threatened near total collapse. Thin margins between the cost of providing care and what parents can afford to pay makes for a shaky business model- even a "broken market." Federal investments through the American Rescue Plan's child care stabilization grants and State and Local Fiscal Recovery Funds shored up the child care sector temporarily, but the fissures in the system remain. A recent analysis of child care prices from the Department of Labor showed families pay between 8% and 18% of household income on child care based on county size and type of care. While higher income families pay more overall for child care, low income families pay a greater share of household income. While the Care Executive Order cannot fix systemic issues in the sector, it did provide direction to the largest federal early care and education program: the Child Care Development Fund (CCDF), a program designed to help lower income families stay at work through subsidized child care.

How the Federal Government is Responding

The Care E.O. issued multiple directives related to subsidized child care provided through CCDF. A new rulemaking from the Administration for Children and Families addressed these directly. The rule aims to lower costs for families by requiring states to cap copayments for subsidized child care to 7% of the household income- a standard for affordability endorsed by the Department of Health and Human Services, and already in place in some states. Reducing and even waiving copays will put money back into families' pockets, and may encourage program participation- which in turn supports higher employment among low income mothers.

The rule also revises payment practices in the CCDF program to incentivize provider participation- thus increasing care supply and options for families who receive subsidies but struggle with limited provider options. Provisions include paying providers in advance of service and compensating providers for services based on enrollment rather than attendance. These changes align with practices for private paying families, which may make program participation more attractive for child care providers while reducing unintended preference for private paying families.

All things considered, the federal government estimates that this rule will impact 800,000 families (1.3 million children) who participate in subsidized child care programs, ultimately shifting ~ $200 million in costs away from families and back to states.

But again, the CCDF rule goes beyond the costs and supply of care to reduce administrative burden within the program by encouraging presumptive eligibility- a policy that "allows families to receive temporary and immediate financial assistance to pay for child care services, while the agency administering the subsidy program determines and verifies their eligibility for the program" according to the Center for Law and Social Policy. This practice is already in place in Delaware, Maryland, Montana, Wyoming, and Monroe County, New York, but the CCDF rule formalizes wider adoption, clarifying that the federal government doesn't just allow this practice but encourages it. The rule also clarifies how siblings of enrolled children can be approved for subsidies without redetermination- not a new policy, but this kind of guidance helps administrators understand what flexibilities are allowed and reduces the chances of policy

misinterpretation that works against children and families.

This rule goes into effect today, April 30th, but states requiring a longer runway for implementation can apply for a two year waiver.

Conclusion

Early progress on the Care Executive Order is very promising. Meeting the broad goals of the order- increasing compensation and job quality for care workers, increasing access to care through federally assisted projects, and expanding care supply and choices for families- has the potential to provide meaningful support to the millions of people who need care, and the millions who provide it. Formalizing the need for greater government attention to caregiving recognizes the often invisible work of care, and underscores the possibilities of an economy with ethics.

This is also an opportunity for agencies to examine the barriers and burdens that too often block people from accessing the programs, and one strategy to do that effectively is treating users of services and supports as customers, and incorporating their voice into policy making. This approach is outlined in the Customer Experience Executive Order issued in 2021, and echoed in the Care Executive Order's final directive: for agencies to prioritize engagement with caregivers and other stakeholders. At least one agency referred to the ways they incorporated user voice into Care E.O. implementation. The Department of Labor's update on efforts to improve data to support the home-and-community-based workforce reported that "stakeholder input is essential, and we continue to look to consumers and their families, direct care workers, including those providing self-directed care, unions, advocacy and provider organizations, state leaders and other stakeholders to inform our work." By adopting similar person centered practices, and making an effort to both understand and minimize administrative burden in programs, agencies have the potential to maximize the positive impacts of the Care Executive Order.

That said, fully meeting the needs of families will take significant efforts from state legislatures and Congress. While Congress has not expanded HCBS or child care programs through permanent funding as proposed in Build Back Better, American Rescue Plan funds delivered a temporary boost that states have used to sustain and even grow the HCBS and child care workforce in multiple ways- one notable example is increasing wages for direct care workers in Pennsylvania. States are stepping in to fill gaps where this funding has lapsed, as The Century Foundation reported earlier this year in the case of expiring ARP child care funds. While Congress did increase funding for child care and early learning by $1 billion for fiscal year 2024, it's far short of the $16 billion request in President Biden's budget. Pairing sufficient public funding with more effective implementation as outlined in the Care E.O. will go much further to address the nation's crisis of care.