Marylanders with disabilities are in a budget fight — again

On a chilly night last year, Mat Rice led a crowd of hundreds outside the State House in a chant against budget cuts for people with disabilities: “Hey, hey! Ho, ho! These budget cuts have got to go!”

Gov. Wes Moore’s administration had proposed hundreds of millions of dollars’ worth of cuts to the state’s Developmental Disabilities Administration. With an intense campaign, Rice and a legion of advocates convinced lawmakers to reverse most of the cuts.

Now Rice, director of the advocacy group People on the Go Maryland, is back at the State House — fighting proposed budget cuts again.

“It is extremely disappointing,” Rice said after participating in a rally last week. “We hope to work this all out.”

Moore’s proposed budget includes “cost containment measures” to reduce spending by $150 million at the Developmental Disabilities Administration, which serves thousands of Marylanders with intellectual and developmental disabilities.

People who participate in those programs, along with their families and caregivers, are marshaling their forces against the cuts, arguing that individuals and workers would be left in the lurch. State lawmakers will begin digging into the details Thursday.

Greg Miller, CEO of Penn-Mar Human Services, which supports hundreds of people, said it feels like Groundhog Day trying to restore cuts again.

“Are there places where DDA has to become more effective and efficient in their modeling and how their finances are spent? Absolutely,” Miller said. “But some of it feels like it’s just arbitrary at times.”

Goal of sustainability

Costs at the Developmental Disabilities Administration have ballooned beyond expectations in recent years, and the Moore team is trying to bring them under control.

Over the past five years, enrollment in DDA programs has increased 11%, but spending has grown 144%, according to the Moore administration.

“Making this program more sustainable so families in the future can rely on this is essential,” said Jake Weissmann, Moore’s budget secretary.

About 20,000 Marylanders participate in DDA programs through Medicaid.

If costs run too high, the state risks losing a Medicaid waiver from the federal government that allows most people with developmental and intellectual disabilities to live in their communities rather than institutions.

Those individuals receive services ranging from personal care to job coaching to supportive housing, either through agencies or by hiring their own aides. Each person’s care plan and budget are approved by the state.

The Moore administration has three proposals:

• Capping individual budgets at $500,000. About 1,600 people have budgets that large, though only about half end up spending that much. The average budget is about $200,000.
• Tightening rules for when an individual receives one-on-one support.
• Reducing the pay that individuals who self-direct their services can offer to their employees, bringing the pay scale in alignment with what agencies pay their employees.

“We believe the approach we are taking is a balanced approach. We are not wedded to it as the only solution,” Weissmann said.

All three proposals have drawn opposition from individuals in the program, their families and the agencies that serve them.

Worries over wage cuts

Individuals who direct their own care are among those most affected by the proposed cost-cutting measures.

Alison Hamilton of Crofton, whose 25-year-old daughter, Leah, receives services, said it’s upsetting that DDA is in the budget crosshairs again.

Leah has autism and language impairment. Although she can handle her own personal care, she needs one-on-one support to help with focusing and navigating outside the home.

Leah’s aide drives her, takes her out in the community and helps her with difficult tasks such as handling money, Hamilton said. Having an aide for Leah means Hamilton and her husband can work.

Hamilton estimates the wage cut could be at least $5 per hour.

“These are people these participants build relationships with,” Hamilton said. “Losses will be felt if staff members can’t afford to do the work.”

Idris Paramole has worked for Rice for more than a year. He drives Rice, who uses a wheelchair, and performs tasks to help him with his job.

Paramole supplements his pay taking shifts as a ride-share driver and delivering food.

“I see Mat as a great leader. ... I’m here to help him be successful,” Paramole said.

Rice worries what will happen if the wages are cut.

“If you can’t attract good staff, that means, for me, risking losing my employment, which keeps me in a home of my own,” said Rice, who lives in Baltimore County.

One-on-one care

Liz Eisner and Mark Lloyd’s daughter Ingrid lives in a supportive housing apartment in Clarksburg. But she needs one-on-one care that could be reduced under the governor’s plan, her parents said.

Ingrid has autism and can’t manage personal care, is prone to run off, doesn’t understand danger and can’t communicate her needs, her parents said. She has complex medical needs, including monitoring of a shunt that drains fluid from her brain.

Having a one-on-one aide for Ingrid, in addition to a shared aide at the apartment, is crucial to her quality of life, Eisner said.

“She loves to go for long walks, but she can’t be out walking by herself,” Eisner said.

Her parents fear, without a dedicated aide, Ingrid will be stuck in her apartment many days and unable to take dance and music classes.

Her parents are concerned the state is proposing cuts without doing a holistic review of DDA’s programs and spending.

“You just feel like they’re just kind of throwing spaghetti at the wall and seeing what sticks,” Eisner said.

‘It’s about daily life’

Families and advocates are hopeful some — or maybe all — of the cuts will be reversed.

Greg Snyder, vice president of the Maryland Association of Community Services, noted that every dollar cut in state spending will result in a loss of federal aid as well.

“It’s about daily life. It’s about safety,” he said. “It’s about stability, health, dignity and the future.”

Del. Emily Shetty, a Montgomery County Democrat who chairs a House Appropriations subcommittee that reviews DDA’s budget, spoke at last week’s rally and said she wants people to speak up more about the cuts.

Shetty said she will work with lawmakers and the governor “to try and make sure that we can do everything we can to support every single one of you as you continue to live your best lives.”

Weissmann said the governor’s team is open to other ideas for controlling DDA spending.

“We look forward to continuing to engage and work with the community on preserving the DDA program,” he said.