A Seat at the Table: Creating Direct Care Workforce Advisory Groups

Across the country, policymakers are discussing, planning, and acting to address the direct care workforce challenges affecting every state in the nation. Yet, direct care workers themselves are often missing from conversations about how policy levers can strengthen workforce recruitment and retention.

While data, existing research, and evidence-based workforce innovations provide a powerful toolkit for policymakers seeking to strengthen the direct care workforce, engaging workers directly in this process is crucial for effective policy development and implementation. Worker voices—especially when empowered through a direct care workforce advisory group—can lead to more insightful and targeted data collection, and better recruitment and retention initiatives.

CMS’s 2024 Medicaid Access Rule calls for states to establish Interested Parties Advisory Groups, which must include direct care workers, to incorporate feedback on home and community-based services rate-setting. By establishing Direct Care Workforce Advisory Groups solely comprised of current direct care workers, states can begin to strengthen workforce participation in policy discussions and prepare workers for more meaningful participation in Interested Parties Advisory Groups and other initiatives going forward.

As referenced below, a growing number of states have already created direct care workforce advisory groups (variously called councils, boards, and panels). Distinct from direct care workforce task forces and workgroups, advisory groups are solely comprised of current direct care workers, and their targeted intent is to ensure workers are formally included in the policy development that most affects their jobs.

When structured and implemented effectively, advisory groups can center and help raise workers’ voices, experiences, and expertise, while creating opportunities to empower workers to influence policies that will affect their ability to perform and stay in the field. Ensuring workers have a seat at state policy tables can lead to smarter policies and better outcomes for workforce challenges in need of effective and durable solutions.

A Replicable Model: Maine’s Advisory Council

Maine’s Direct Care and Support Professional Advisory Council offers a replicable model for states seeking to ensure that workforce perspectives inform their policy change initiatives in a proactive, sustainable way. Since 2022, the Council has been elevating the voice of direct care workers, engaging workers in taking an active role in their working conditions and in better informing state policy decisions. Council members, who are all appointed to serve for a minimum of one year, represent various care settings, client populations, length of time in the field, and regions of the state. They meet online several times a year, and also hold targeted in-person convenings.

The Advisory Council was created and is advised by the Maine Long-Term Care Ombudsman Program, a nonprofit agency advocating for people who receive long-term services and supports. The Ombudsman Program has been instrumental to the Council’s success, securing initial funding for it from the Maine Health Access Foundation, and ongoing funding from Maine’s Office of Aging and Disability Services. Critically, the Ombudsman Program provides a staff member who oversees, organizes, and supports the Council’s work.

PHI has also provided a range of support to the Council. We facilitated a launch meeting at the Council’s inception, to ground the group in shared values and goals. We provided technical assistance with their recruitment process, and PHI is developing and facilitating ongoing workshops focused on topics like strengthening teamwork, communication, public speaking, and advocacy skills. We are designing these efforts to help Council members use their collective power and influence to drive meaningful change. PHI also supported the Council’s Engage and Empower Direct Care Workers Initiative, where the Council conducted a series of focus groups identifying the primary issues facing Maine’s direct care workforce.

The Council has focused its work to date on gaining recognition for direct care workers, increasing pay, and building awareness around quality direct care. In doing so, they have successfully presented to policymakers, promoted state initiatives, and published multiple op-eds.

For more information, please see the Council’s recent report, Uplifting the Voices of Maine’s Direct Care and Support Professionals.

How States Can Develop Effective Direct Care Worker Advisory Groups

1. Meet direct care workers where they are.

States should thoughtfully consider the barriers direct care workers might face to joining an advisory group, then plan to remove or reduce those barriers. Many direct care workers live in or near poverty, and many rely on public assistance to make ends meet. Workers may not have access to reliable transportation for in-person meetings and/or they may not have time to travel to advisory group meetings. They may not be able to afford time away from work, or may not have employers that would allow them to take time off to join an advisory group. States should meet workers where they are, including by:

• Substantially compensating workers for their time (e.g., Maine pays workers $50 an hour for time spent working on the advisory group).
• Ensuring meetings are scheduled outside of when the members are working their direct care jobs.
• Holding remote meetings when possible and reimbursing transportation costs for in-person events.
• Providing language access services and disability accommodations to ensure that the advisory group and its meetings are accessible.

2. Recruit members that represent the breadth and diversity of the workforce.

Advisory groups are often tasked with sharing their perspectives on behalf of thousands of workers across job titles, care settings, demographic characteristics, and personal experiences. It is vital for states to select members who reflect the full diversity of direct care workers in the state. Important areas to consider include:

• Demographic characteristics (like age, citizenship, gender, parental status, and race/ethnicity). You can find demographic information for your state’s direct care workforce at PHI’s Workforce Data Center.
• Job titles and settings that capture the range of different types of direct care workers the advisory group will be representing.
• A mix of different experience levels and roles, bringing together workers who have been on the job for decades with workers that are rather new to their positions, and considering both entry-level direct care workers alongside those in advanced roles.

3. Support members with training, assistance, and opportunities.

Direct care workers are trained and certified to provide quality hands-on care to older adults, people with disabilities, and people with serious illnesses. Running and operating an advisory group requires its own training and support. For states bringing workers together in this type of group, it is vital to ensure that workers are trained and supported in fulfilling the mission and goals of the group. Such assistance can be the difference in ensuring that the advisory group is transformative rather than performative. This training and assistance can include:

• Helping workers navigate reaching consensus and making decisions as a group.
• Supporting workers in communicating their ideas to policymakers, speaking to journalists, and/or telling their stories through social media.
• Providing background on previous state recruitment and retention initiatives that workers may not have familiarity with.
• Responding to members’ requests for additional training and help (e.g., in Maine, the Advisory Council identifies the trainings needed to support its work).
• Ensuring members have tech support for online meetings and assistance with traveling for in-person events.

In addition to training, states should generate opportunities for the advisory group to present their work and recommendations to policymakers. Facilitating opportunities for the advisory group to be in the room ensures that workers’ efforts can have a measurable effect on workforce conditions around the state. For example, states can:

• Set time with relevant legislative committees and agency leadership.
• Incorporate formal advisory group reviews of various agency initiatives or legislation that will affect the direct care workforce.
• Publish a report or hold a conference created by the advisory group.
• Raise the profile of the advisory group, such as by hosting a website for the group (including sharing bios from members).

4. Get help from experts in the field.

Multiple advisory groups have been established, and more are in development, so states interested in establishing their own do not need to start from scratch. As previously mentioned, Maine’s Direct Care and Support Professional Advisory Council has had several early successes that highlight the strengths of its model. The Maine Long-Term Care Ombudsman Program is building an informal network by meeting with other states to share best practices. This effort draws perspectives from groups like Indiana’s Home and Community Support Professional Advisory Board (formerly the Direct Service Workforce Advisory Board), New Hampshire’s Direct Care Worker Council, and Colorado’s Direct Care Workforce Collaborative (while not strictly a worker-only advisory group, the Collaborative focuses on direct care workforce recruitment and retention).

Further, this informal network is advising states (such as New Jersey) who plan to develop their own advisory groups. The Iowa Caregivers Association’s Direct Care Council represents another strong reference point for direct care workforce inclusion in an advisory capacity.

An additional resource to consider is ADvancing States, a membership association for state aging, disabilities, and long-term services and supports agencies. They are assisting Indiana’s previously mentioned Advisory Board and Missouri’s new Direct Service Worker Advisory Panel.

Finally, please note that PHI is supporting advisory groups around the country through its multi-disciplinary approach, linking workforce interventions, research and evaluation, and policy advocacy. Most notably, we have served as the primary training provider to Maine’s Advisory Council while advocating for additional states to adopt a similar model.

For states or advocates interested in creating a direct care workforce advisory board, please contact PHI’s Senior Policy Advocacy Specialist, Jake McDonald at jmcdonald@phinational.org.