Giving Direct Care Workers a Seat at the Policy Table
One of the most powerful sessions at the ADvancing States HCBS Conference in Baltimore (August 2025) tackled a deceptively simple question: What happens when the direct care workforce is not just discussed in policy but directly involved in shaping it?
The session, “A Seat at the Table: Involving Direct Care Workers in Policy and Rate Setting,” featured:
Jake McDonald, PHI (PHI National)
April Young, ADvancing States
Marnie Mountjoy, Kentucky Department for Aging and Independent Living
Together, they explored why direct care workers (DCWs) — more than 5 million strong — remain excluded from most policy decisions, and how states are beginning to change that.
The Workforce We Rely On, but Don’t Hear From
DCWs include home care workers, residential care aides, nursing assistants, and, in the ID/DD field, direct support professionals (DSPs). Yet, notably, there is still no federal occupational code for DSPs, leaving them invisible in critical workforce planning and reimbursement structures.
By 2032, nearly 9 million job openings are projected across these occupations. But attrition is already crippling the sector. PHI argues that the problem is clear: the jobs aren’t good enough. Low pay, limited benefits, unstable schedules, unsafe conditions, and few opportunities for advancement make retention nearly impossible. And because the workforce is overwhelmingly women, immigrants, and people of color, these structural inequities are tied to longstanding racist and sexist assumptions about care work.
Despite being the backbone of long-term services and supports, DCWs are rarely included in the policy rooms where decisions about wages, training, or Medicaid reimbursement rates are made.
PHI’s Case for Worker Advisory Groups
PHI has long advocated for bringing workers’ voices into policymaking. They support creating Direct Care Worker Advisory Groups — bodies composed of workers themselves, distinct from traditional task forces that also include employers, agencies, or consumers.
The case is straightforward:
Better policy design: Workers bring front-line expertise about what actually works and what doesn’t.
Smarter implementation: Feedback loops help states understand if new initiatives are having their intended effects.
Stronger outcomes: Elevating worker perspectives improves retention, which directly improves care quality.
PHI ties this effort to federal policy as well. The 2024 Medicaid Access Rule now requires states to establish Interested Parties Advisory Groups (IPAGs), which must include both DCWs and consumers as part of rate-setting processes.
But building effective worker groups takes intentional design.
Best Practices for DCW Advisory Groups
PHI outlined four core strategies:
Meet workers where they are.
Pay them for their time.
Offer stipends, travel reimbursement, remote options, language access, and disability accommodations.
Recruit diverse membership.
Reflect demographics, job settings, and experience levels.
Include long-tenured staff as well as entry-level workers.
Support members with training and preparation.
Teach consensus-building and group decision-making.
Provide background on policies and legislation workers may not otherwise follow.
Use facilitators to translate discussions into action.
Get help and build networks.
Learn from states with existing advisory groups (CO, IN, IA, KY, ME, MO, NH).
Share practices across states and agencies.
These practices make advisory groups more than symbolic — they become power-shifting bodies where workers’ voices meaningfully shape Medicaid policy and rate structures.
State Spotlights: What Advisory Groups Can Do
Indiana and Missouri
Indiana created the Home and Community Support Professional Advisory Board (note the importance of including “professional” in the title). The group meets regularly to advise on workforce issues and marketing campaigns.
Missouri’s group weighed in on the state’s new online LMS, worker supports, and rate surveys, while also testing communication strategies (like whether workers prefer group texts vs. email). Members even presented at the Medicaid Directors Conference — a powerful visibility boost.
Maine
Maine’s approach demonstrates the potential for advisory groups to evolve into policy powerhouses:
Started with a grant-funded advisory council, then secured state funding.
PHI helped train workers on group decision-making and policy basics.
Leveraged media (news, radio, op-eds) to amplify worker voices.
Hosted annual conferences where DCWs, policymakers, and advocates engaged directly.
Produced policy reports (e.g., Uplifting the Voices of Maine’s Direct Care and Support Professionals, 2024).
This led to tangible policy influence: wage legislation, standing meetings with the governor, and direct input into Medicaid program design. Workers even began touring the state to run focus groups and mentor peers into advocacy roles.
Kentucky
Kentucky’s Participant Directed Services Consortium (soon to be renamed) includes 20 members representing participants, case managers, financial management agencies, and workers. Monthly meetings address waiver-specific services, roles, and barriers. After one year, members had influenced communication practices, clarified roles in participant-directed services, and raised worker concerns about paperwork, background checks, and mentorship supports.
Practical Lessons for States
Speakers stressed that advisory groups must be designed with purpose and sustainability in mind.
Executive sponsorship is essential. Agency leaders set the tone and legitimize the group.
Clarity of purpose matters. Define what members are being asked to do and what impact they can have.
Visibility and recognition are motivators. Publish member bios, highlight their input in reports, and showcase their work at conferences.
Flexibility in structure helps balance diversity and practicality. Some states mix standing advisory groups with rotating focus groups or annual conferences to bring in fresh voices.
The overarching lesson: inclusion only works when it is resourced, supported, and taken seriously.
Why This Matters for Workforce Policy
This session connected directly to a theme running throughout the conference: you cannot fix the direct care workforce crisis without listening to the workers themselves.
Rate-setting conversations that ignore worker input risk missing the root causes of attrition.
Workforce development plans that exclude workers miss insights on what actually supports retention (mentorship, scheduling stability, supervision).
Recruitment campaigns designed without worker voices miss what messaging resonates.
Workers want to be part of the solution. What they need is access, training, and recognition.
Federal Context: The Medicaid Access Rule
This conversation about advisory groups isn’t happening in a vacuum. In 2024, CMS finalized the Medicaid Access Rule, which requires states to establish Interested Parties Advisory Groups (IPAGs) as part of their rate-setting and access monitoring processes. These groups must include direct care workers and consumers, marking the first time worker voices are explicitly required in Medicaid policymaking at the federal level.
I unpack the Access Rule in detail — including what states must do, the timelines, and what it could mean for providers — in a dedicated post. Read that post here.
My Reflection
I found this session refreshing because it reframed the workforce crisis as not just a resource or training issue, but a power issue.
Direct care workers are overwhelmingly women, immigrants, and people of color. Their exclusion from policymaking is not accidental — it reflects historical undervaluing of their labor. Creating advisory groups is more than a technical fix; it is a step toward shifting power to the people most affected by policy decisions.
The examples from Maine and Kentucky show that this isn’t just theoretical. When workers are included, they grow into advocates, influence legislation, and improve care delivery. And when workers feel heard and respected, they are more likely to stay in the field — a win for everyone: providers, states, and the individuals who rely on care.
As states implement the Medicaid Access Rule and create Interested Parties Advisory Groups, they would do well to learn from these early models. Building authentic, resourced, and respected worker advisory groups could be one of the most impactful steps states take in the next decade to stabilize the workforce.
Further Reading
PHI National – Research and resources on the direct care workforce.
Essential Workforce – Advocacy and resources for Maine’s direct care professionals.
