State tentatively restoring millions for disability services after weeks of advocacy

Yahoo

26-03-2025

This is part 2 of a 2-part series about the challenges of navigating self-directed services, a disability care model.
Part 1, which addressed the impact of policy changes made to self-directed services in 2024, ran in the March 15-16 edition.
When Carol Custer first saw Gov. Wes Moore's proposed budget for the coming fiscal year, she was devastated and confused.
Moore released his $67.3 billion budget proposal for fiscal year 2026 on Jan. 15, amidst a projected $3 billion deficit for the state.
That proposal would fill in the deficit and leave Maryland with a positive cash balance of $106 million.
It also included millions in cuts to the Developmental Disabilities Administration (DDA).
Custer, who lives in Frederick County, is a board member of the Self-Directed Advocacy Network of Maryland (SDAN), an organization that promotes self-directed services.
Self-directed services is one of the disability care service models the DDA offers. It allows people with intellectual and developmental disabilities to choose how they spend funding that the state gives them.
Participants can choose which services they receive, how they receive the services and what staff provides their care.
Each participant has a Person-Centered Plan, which outlines what services and programs they want, and a budget based on that plan.
For most of 2024, following a change in leadership at the DDA, self-directed services participants had what felt like a sea of red tape to cross to access funding they were already approved for. They also had trouble getting their Person-Centered Plans approved.
In November, the DDA rolled out several changes to self-directed services, codifying the difficulties people were already experiencing.
People with disabilities, their families, staff members and other advocates were calling their local legislators, marching in front of the State House in Annapolis and attending hearings to share their stories and how cuts to the DDA could drastically change lives.
Among those proposals were cutting wages for support staff, eliminating some programs for people with disabilities and reducing funds for one-to-one and two-to-one staffing with people who need services.
Danielle Gummo, Self-Directed Services
Danielle Gummo, center, counts dollar bills with Raquel Malave, a professional direct support staff for Danielle, right, as Sarah Hickman, Danielle's roommate, watches at Danielle and Sarah's home on March 10. Danielle has Down syndrome and started transitioning to using self-directed services in 2018. Danielle and Raquel were determining how much was spent on Danielle's activities for the day.
Throughout the 2025 Maryland General Assembly session, adjustments to the cuts have been made as advocates told their stories.
Maryland budget leaders and the Moore-Miller administration released a joint statement on Feb. 20 that they were restoring a total of $76 million in planned DDA state budget cuts for the current fiscal year.
This funding will help provide consistent disability care services through the end of fiscal year 2025.
On March 4, Moore's administration released a fiscal year 2026 supplemental budget to adjust his original proposal.
The supplemental budget includes $154 million more in state funds for DDA community services.
However, most of the originally proposed DDA cuts for fiscal year 2026 — including cuts that would impact self-directed services — remained and left participants, their families and other supporters distraught and frustrated.
But on March 20 — the same day Moore and the General Assembly announced a budget framework with new taxes and more state spending reductions — the House of Delegates' Appropriations Committee announced it was restoring millions in DDA funding.
On Tuesday, the state Senate's Budget and Taxation Committee met to make decisions on the budget, which included accepting some recommendations from the House on DDA cuts and making adjustments to others.
It's a sigh of relief for self-directed services, though not the end of the struggles that became more pronounced by policy changes last November, according to Custer.
Budget deliberations were still ongoing as of Tuesday. The state Senate and House of Delegates have to pass a budget bill by March 31.
In 2024, about 19,500 people were using DDA services across the state, 3,855 of which were self-directed services users.
The other people used traditional services, meaning their care is overseen by provider agencies.
Custer said she's happy that hundreds of millions of dollars in funding is on track to being restored, but if people who self-direct still have problems accessing their funding, many issues will continue.
"I'm happy that they restored [a lot of] the budget. That took away a lot of pressure, but honest to God, it was all there before we even had a budget cut," she said.
The original cuts
On Feb. 7, DDA officials, including its deputy secretary, Marlana Hutchinson, hosted a community input meeting to discuss the proposed cuts.
Hutchinson said Moore's originally proposed budget includes more than $1.3 billion in state general funds for the DDA — two thirds higher than it received three years ago.
She said the funding will help support new enrollments, long-term services and support improvement, and create a moderate rate increase for providers.
Some of the proposed changes include eliminating higher rates for staff in more expensive counties and getting rid of low-intensity support services for children and adults with disabilities.
Five counties — Frederick, Montgomery, Prince George's, Calvert and Charles — currently have a "geographical differential" rate for support staff above the rate for staff in other counties.
Danielle Gummo, Self-Directed Services
Danielle Gummo, left, smiles at Raquel Malave, one of Danielle's professional direct support staff, as Gummo works at Beans & Dreams - Nektario's Place on March 10.
For most of the state, there is a set maximum wage exception for employees, which varies depending on the position. In these five counties, that maximum wage exception is higher because the cost of living is higher.
Traditional services providers in those counties can get paid that higher maximum exception rate, and self-directed services participants living in those counties can get that rate as part of their budgets to pay staff.
Hutchinson said this change would allow the DDA to "preserve, promote and maximize funding" for the administration's community services.
Through low-intensity support services, the DDA provides up to $2,000 to adults and children with intellectual or developmental disabilities to help them buy services or items to address their needs.
There were also proposals to change the DDA's reasonable and customary rates to align with wage rates from the federal Bureau of Labor Statistics, as well as eliminate wage exceptions for self-directed services participants.
Other proposed cuts to DDA services mentioned in the meeting include:
• Requiring providers to use up shared hours before using their dedicated hours, which are one-to-one and two-to-one staff-to-participant support hours based on the participant's needs
• Placing a cap of $5,000 on individual-directed and family-directed goods and services, which are activities, services and supplies to help participants with a need or goal, independence or community inclusion
Danielle Gummo, Self-Directed Services
Cash envelopes are shown at Danielle Gummo's home on March 10. The envelopes are used to budget how much money Danielle has to spend on different things in her life.
• Using money in a waiting list equity fund — which provides funds to participants on waiting lists for community services — to help pay for DDA community services
Maryland Department of Health spokesperson Chase Cook responded on Feb. 28 to questions a reporter had emailed and asked for responses from Hutchinson.
"The disabilities community has stepped up and made their voices heard. The department fully recognizes that the proposed reduction in the DDA budget has real consequences for the people who rely on these services," Cook wrote.
"We understand the impact that the DDA budget has on the lives of Marylanders. Most importantly, we are committed to working together to find solutions that honor the dignity and well-being of the developmental disabilities community."
Cook did not respond to an email sent March 20 asking if the DDA or Hutchinson has comment on the fiscal year 2026 budget and the potential cuts.
Advocates at the General Assembly
For about a year, state Sen. Karen Lewis Young, who represents Frederick County, has consistently heard concerns about the challenges people who self-direct started seeing in 2024.
Self-directed services is a topic close to her heart. In 2022, when she was a state delegate, she was the House sponsor for the Self-Direction Act.
This legislation expanded self-directed services and the funding people could access.
In an interview on Feb. 12, Lewis Young said she and other legislators were already concerned about budget cuts being made "on the backs of people with disabilities" when Moore's proposal came out.
"Even before the governor's budget came out, they [the DDA] were pulling back. They were denying services that were part of the bill, part of the law, and when people would call to challenge, they wouldn't even get a return phone call," Lewis Young said. "So, in a way, we saw this coming."
Lewis Young is a member of the state Senate's Budget and Taxation Committee, but she isn't a member of the subcommittee focused on health and human services.
She had spoken with her colleagues who do sit on the health subcommittee, as well as state Sen. Guy Guzzone, the chair of the Budget and Taxation Committee, and Senate President Bill Ferguson regarding the DDA cuts in Moore's budget.
State Del. Kris Fair, who also represents Frederick County, also met with the DDA along with Lewis Young. He was part of her staff when the Self-Direction Act passed.
In addition to giving people with disabilities more freedom, self-directed services also saves taxpayer money, Fair said in an interview on Feb. 5.
pull quote
He said "there is no middle ground here for me when it comes to the cost of self-direction."
He said "there is no middle ground here for me when it comes to the cost of self-direction."
"Self-direction is a program that is one of those unique win-wins in society. It is a program that is person-centered, that allows the person the autonomy and agency to actually lead their own service care model, and it saves the taxpayer money," Fair said. "... I cannot see a bigger win for all of us than this program."
The restorations
On March 20, the House of Delegates' Appropriations Committee announced the restoration of significant amounts of funding to the DDA budget, changing several of Moore's originally proposed cuts.
The committee's report on the budget bill, which can be accessed online at bit.ly/4iFRZMH, proposes to restore about $147 million in state funds to the DDA in fiscal year 2026. These changes can be found on page 239.
Some of these changes directly pertaining to self-directed services include that the reasonable and customary rates for staff will not be changed and wage exceptions will not be eliminated.
Danielle Gummo, Self-Directed Services
Danielle Gummo, left, dances with her roommate Sarah Hickman, right-center, at the Walkersville Bowling Center on March 10. The two have been living together since August of 2024. Both Danielle and Sarah use self-directed services.
However, the wage exceptions for people who self-direct will be allowed up to 15% above the maximum reasonable and customary rate and 10% above the standard maximum wage for the geographical differential counties.
Additionally, the committee rejected the proposal to eliminate low-intensity support services and allocated $2 million to the program for the coming fiscal year.
The committee also said to cap individual grants from this program at $500.
Under the committee's changes, the geographical differential rates for providers will not be eliminated. Those rates will instead be capped at 10% above the other state rates.
Additionally, the committee said that the DDA can't consider the availability of shared hours in a home when approving the dedicated hours a participant needs from their staff.
The state Senate's Budget and Taxation Committee accepted several of the House Appropriations Committee's recommendations, but it still made some adjustments.
One change by the Senate included capping geographical differential rates that are already more than 10% above other state rates to be at 10% above the rates.
The Senate committee also said the cap for low-intensity support services grants should be $1,000 instead of $500.
'Cautiously optimistic'
Carol Custer said self-directed services users were worried the original cuts would mean sacrificing qualified staff and the programs they need — and possibly being institutionalized.
She's glad that legislators were supportive of trying to reduce or eliminate the DDA cuts, and it's "appropriate" that funds were restored.
Some weight has been lifted off participants and staff members — but Custer said there's still work to be done to undo DDA policies that make it hard to self-direct efficiently.
"It comes back down to the access issue," Custer said. "Self-direction gets the same amount in their budget, but it's blocked by blocking the wages of the employees. It's blocked by denying access to funds for programming."
Lynne Gummo, another SDAN board member, has a 29-year-old daughter, Danielle Gummo, who self-directs. Danielle has Down syndrome and uses most of her DDA funding to pay her staff.
Lynne, who lives in Montgomery County, is part of Danielle's staff and handles day-to-day administrative tasks, such as tracking her daughter's expenses and maintaining Danielle's home in Frederick.
Danielle has multiple jobs, including working at Beans & Dreams - Nektario's Place, a coffee shop in Middletown, and lives with one roommate. She has a full life, seeing friends and her boyfriend after work and going bowling every week.
Danielle Gummo, Self-Directed Services
Danielle Gummo, left, watches as her boyfriend Bill Hutchison opens a birthday present from her at the Walkersville Bowling Center on March 10. The two have been dating for two years and attend bowling with other friends who use self-directed services.
Danielle Gummo, Self-Directed Services
Bill Hutchison reads a birthday card from his girlfriend Danielle Gummo at the Walkersville Bowling Center on March 10. The two have been dating for two years and attend bowling with other friends that use self-directed services.
Her staff consists of seven people, including a job coach who guides her through work and helps her with professional skills like spelling names and counting money.
Danielle also has multiple life coaches, who work with Danielle to achieve her goals and live independently.
In Danielle's home, there's a thick binder containing hundreds of pages of documents. It includes Danielle's budget, an employee manual and resources for staff members, like what life coaches need to check off during their shifts.
Danielle Gummo, Self-Directed Services
Danielle Gummo, left, and her roommate Sarah Hickman sit together at their home on March 10. The two have been living together since August 2024.
Lynne said that Danielle used traditional services in 2017 and began the switch to self-directed services in 2018. After the COVID-19 pandemic, Danielle started using only self-directed services.
When she used traditional services, Danielle lived with her father and stepmother. She would go to her service provider's program and then go home, Lynne said.
Danielle suffered "significant mental and emotional concerns" because she was so isolated, her mother said.
Lynne said traditional services didn't allow Danielle to have the staff she needs to live independently and work, like she does now.
Most of Danielle's DDA funding goes toward staff wages and giving them benefits, such as paid time off and holiday pay.
If there are cuts to DDA funding and how much Danielle receives to pay her staff, Lynne said, "we won't be able to make this work."
She doesn't want Danielle to experience the same isolation she felt while using traditional services, should they have to let staff go.
"If you look at how she spends her money, it's 95% staff," Lynne said. "... If you have somebody that works well with Danielle — and knock on wood, we have — we want to be able to keep them."
Lynne learned about the funding restorations on Thursday. She said she is still worried about the impact of capping certain wage rates, as that could impact her daughter's staff and whether they decide to keep working for Danielle or not.
Still, it was nice to see that the work and advocacy of so many people and organizations "created awareness at the legislation level to be able to make some changes and to address it."
"I'm cautiously optimistic because we still have a lot of work to do," she said.
"... There's a lot of misunderstanding about self-direction, what it really is doing to help support this community and that all of us, we all have a responsibility to continuously educate our communities and our legislators."
Danielle Gummo, Self-Directed Services
Lynne Gummo, Danielle Gummo's mother, looks through documents at her daughter's home. Lynne keeps track of different logs from support staff.
Shari Silverman, a Frederick County resident, has a 23-year-old son, Sam, who self-directs his services.
She said she was upset and worried about the proposed cuts because it could mean one-to-one staff support services are reduced, and Sam's staff members may leave if they make less money.
Silverman said her and her son's lives would change drastically if he couldn't have good caregivers.
She was worried she wouldn't be able to keep working because she would need to make sure she could take care of him, should his staff leave. Then, there'd be the issue of how Silverman could support herself financially.
She said in an interview Tuesday afternoon that she's "very happy and grateful" that legislators have worked hard to get funding back — but she's still worried, since the budget isn't concrete yet and needs to be approved by the General Assembly and Moore.
She also said she is still "a little untrusting" of the DDA, since the administration still has policies that make self-direction difficult and may not consult stakeholders on other future policy changes.
"I'm worried that I'm going to be able to continue to pay my staff what they're making, or if Sam gets new staff, whether I'd be able to pay them enough to keep them and make it a career and offer benefits," Silverman said.
Danielle Gummo, Self-Directed Services
Danielle Gummo, center, smiles while embracing her roommate Sarah Hickman, left, and Danielle's boyfriend Bill Hutchison as the trio prepares for a group photo at the Walkersville Bowling Center on March 10.