Maryland delays disability services cuts, but advocates warn relief is temporary

BALTIMORE - Maryland disability advocates and caregivers braced for sweeping cuts to Developmental Disabilities Administration services Wednesday - then learned the night before that the state was delaying key changes, leaving families scrambling to understand what the postponements mean and whether the relief will last.

The delays offer temporary respite to thousands of Maryland families who rely on the state's self-directed services program, which allows people with intellectual and developmental disabilities to hire and manage their own caregivers. But advocates say the reprieve does little to resolve the underlying turmoil - wage cuts, hour limits and licensing requirements are still coming, and the state's last-minute reversals have left families, caregivers and small service providers unable to plan.

"This has just been such a roller coaster of emotions. It's like the DDA will implement, or say that they're creating a new policy, and we're just constantly pivoting, and then it's changed back," said Michelle DeFeo, coleader of Concerned Citizens of Self Direction Maryland.

"It's really undue stress" that could have been alleviated, she said, if there were "true stakeholder input and (a) responsible workgroup that actually went into this and did studies."

In March, state lawmakers passed a budget with $127 million in cuts to disability services, cutting caregiver wages and limiting hours for family-paid care in the self-directed services program.

State officials justified the cuts by pointing to federal Medicaid requirements. Maryland participates in a Medicaid waiver program for self-directed services, and to maintain that funding, the state must demonstrate "cost neutrality" - meaning the cost of caring for someone at home or in a community setting cannot exceed what it would cost to place them in an institution.

Maryland recalculated cost neutrality - finding that home and community care costs had grown close enough to institutional care costs to put federal funding at risk - and pointed to those calculations as justification for the budget cuts.

But some advocates say the numbers weren't calculated correctly, and they have been demanding answers since the budget passed in March. DeFeo said she, her coleader Carin Smith and others spend six to seven hours a day outside of their jobs working on these issues. Both DeFeo and Smith have children with disabilities in the self-directed model.

"We're exhausted, we're tired, and especially, you know, the families who are constantly contacting their legislators, trying to get answers between the department, the governor's office," DeFeo said.

The MDH said that a comprehensive review of the cost-neutrality methodology used under the previous administration found that services funded entirely with state money were included but should not have been.

"Maryland's updated methodology uses historical Medicaid claims for both institutional and home and community-based services to calculate cost neutrality, ensuring the calculation reflects only Medicaid-funded costs," the department said in a statement.

Wage cuts for the self-directed model were slated to take effect July 1, raising concerns for family members who wouldn't be able to sustain themselves at the new rate or worries that caregivers would leave for other jobs. But the evening before these changes would occur, the Maryland Department of Health sent an email notification that implementation of the new wage standard had been extended.

Participants in the program can freeze wages at their June 30 level until the Center for Medicare & Medicaid Services approves the state's waiver amendment, which MDH said it has submitted. However, Carin Smith, DeFeo's coleader at Concerned Citizens of Self Direction Maryland, said that some participants had already adjusted their paperwork to reflect the wage changes, and the community is in a "tailspin" unsure about what the updates mean.

The wage standard adjustments and changes to hour limits for family caregivers are set to take effect Oct. 1, pending the state's waiver approval.

While the community is relieved, they know the cuts are coming in the future, which is a "terrible feeling" that's "consistent with kind of how things go," DeFeo said.

Other changes to take effect July 1 included the requirement for small vendors who provide services in the self-directed model to apply to become a licensed provider with the DDA. One small vendor told The Baltimore Sun that they were given 60 days' notice to get their applications in, but the process can take months. The vendor feared losing their business entirely, leaving participants with nowhere to turn.

The requirement for vendors to become licensed providers has been extended to Aug. 15.

The MDH updated the proposed waiver amendment submitted to CMS, including emergency exceptions to the hour limits on family-paid care under the Community Pathways program "to support continuity of services during unplanned worker departures and to protect participant health and welfare during unexpected staffing situations."

Additionally, the implementation of the new self-direction budget methodology has been revised to Jan. 1, 2027, meaning participants will retain control over their caregivers and budgets in the meantime.

"These are Medicaid dollars that come with a lot of responsibility … the intended purpose is to support people with developmental disabilities to live in the community," said Laura Howell, CEO of the Maryland Association of Community Services.

She noted that many states are struggling to balance those obligations with a strong self-directed care model, and that Maryland is not alone. But she said Maryland faces particular challenges in ensuring it meets Medicaid requirements, especially given significant growth in the number of family members being paid as caregivers.

Del. Lauren Arikan, a Harford County Republican, said that the waiver change was unnecessary. She was told cost neutrality was in jeopardy when lawmakers were passing the budget, but that was inaccurate, she said. She has been waiting for more answers from the DDA about what was known when making the decision to change the waiver.

The impact on self-directed services takes away dignity and autonomy from participants, which was the point of the program, Arikan said.

"It's really backwards thinking, and it's taken our state, I think, in really the wrong direction in terms of how we provide for the folks in our community who are probably the only people that we should be spending tax dollars on," Arikan said.

Other advocates, including Peter Mattes, a board member of the Self-Directed Advocacy Network of Maryland who cares for a disabled family member, also raised concerns about what they say were incorrect numbers used by the state.

"What (are) the priorities here? Apparently disabled people are not priority," Mattes said.

The MDH said its implementation of this year's budget requirements will "evolve in response to federal guidance and feedback from the stakeholder community and legislative and federal partners."

As the Maryland General Assembly eyes a special session to address redistricting, DeFeo and Smith said they're calling for a pause on all the changes and for lawmakers to add DDA cuts and issues to the session, gaining thousands of signatures on a petition. DeFeo said they'll continue to push for more stakeholder engagement.

"This should be a nonpartisan issue where both Democrats and Republicans want the best care for the most vulnerable citizens in Maryland," DeFeo said.

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This story was originally published July 1, 2026 at 9:44 PM.