Disability advocates fear that new rules under the Developmental Disability Administration will create hurdles for those who self-direct their disability care services. Photo by Danielle J. Brown.
Disability advocates who receive “self-directed” care rallied Tuesday in Annapolis to protest new state documentation requirements that they say were rushed through and will burden thousands of disabled people and their caretakers with unnecessary paperwork.
Affected families said they were overwhelmed by the changes, which they only learned about in an Oct. 24 email from the Developmental Disabilities Administration, notifying them of new reporting requirements and a 120-page manual on self-directed services. Those changes are scheduled to take effect Thursday.
“Where’s the fire? Why are you rushing to implement these policies without talking to us and ignoring us when we tell you that these are damaging, these are going to hurt people,” said Ginger Houston-Ludlam, board member for the Self-Directed Advocacy Network of Maryland, at the rally outside the State House.
But state officials say the new rules are intended to improve oversight of the joint federal-state funded programs and make them more efficient. The Department of Health oversees the DDA.
“Changes will not only help reduce processing delays — ensuring care providers are paid in a more timely manner and participants receive the level of care they need — but will ensure that these taxpayer-funded services are delivered responsibly and with appropriate oversight, in accordance with state and federal authorities,” Chase Cook, communications director for the Department of Health, said in a statement Tuesday.
At issue are the DDA’s oversight of Medicaid waivers that allow people to receive a wide variety of services, from live-in caregiver supports to transportation, respite care, employment services and more.
Almost 20,500 Marylanders with development disabilities received a Medicaid waiver in 2024 to help their families afford services. About 16,300 families opt for “traditional” services, meaning they join an existing program that provides day care, transportation and other services for people with disabilities.
But about 3,600 families choose “self-direction,” which lets them determine how to best support their disabled relative without the guidance of a program, so long as they use those funds on accepted services such as hiring support staff to help with the disabled family member’s day-to-day activities. The waiver recipient, or a designated representative, takes on the responsibility of organizing those services.
But advocates at Tuesday’s rally said the DDA did not seek adequate public input from families and waiver recipients before issuing the new policy changes that require more paperwork and make it harder to self-direct certain services.
“I get perfect care … that’s the way I want it to stay,” said Ed Little, a Frederick resident whose family members manage most of his care under a self-directed Medicaid waiver, at the rally.
The Oct. 24 email that first announced the changes first said the overhaul was set to take effect Nov. 7. The initial proposal included a change that said family members could be both caretaker and designated representative for a waiver recipient. In many self-directed families, a relative may take on several roles to provide care for their loved one.
That particular issue was clarified in a Nov. 6 update to the policy, that said a designated representative could also serve in certain caretaker roles. That announcement pushed the effective date back two weeks, to this Thursday.
But advocates still say that the lack of transparency and public input has eroded their trust that the DDA will consider the needs of the people who rely on self-directed services.
“Maryland used to be known as a leader in supporting people with intellectual and developmental disabilities,” said Houston-Ludlam, whose 26-year-old daughter receives services through the self-directed Medicaid waiver. “Not anymore. We have stepped back decades with this DDA and MDH leadership.”
Even with the latest plan, disability advocates say the rules are problematic. They say the new policy increases the amount of paperwork needed to receive services, and some fear the goal is to load waiver recipients with bureaucratic hurdles in hopes that families will give up and no longer seek support, potentially saving the state money amid a grim fiscal picture.
“We understand that the state of Maryland has a budget shortfall, but you shouldn’t be balancing the budget on the backs of people with disabilities because you think they can’t fight back,” Houston-Ludlam said. “Sit down with us, we can help craft policies that are compliant with the law, that are more cost effective, without throwing people with disabilities under the bus.”
Despite their calls to delay the rules again for additional public input, currently the policy will still take effect on Thursday. But state officials said that is not the end of the discussion.
“Improving the Self-Directed Services delivery model will be an ongoing process and engagement with our provider and participant communities is one of DDA’s core values,” Cook’s statement said.
“We look forward to working in partnership to promote the delivery of these services for the Marylanders and families who need them,” he said.