15-03-2025
LEFT DIRECTIONLESS: State policies for those directing their own disability care are hindering people's independence
This is part 1 of a 2-part series about the challenges of navigating self-directed services, a disability care model.
Sam Silverman, a 23-year-old man who is autistic and has two chromosome disorders, hires support staffers to help him every day in his apartment in Frederick using funds the state has allocated to him.
His mother, Shari Silverman, pays for the apartment. She said Sam can't be left alone, so he receives assistance from a support worker he hired for behavioral and medical issues.
Sam also hired a behaviorist and a nurse who oversees him and his other support staff.
When he isn't home, Sam will go to a skills enrichment center in Mount Airy called The Difference 2-17.
He also participates in drama classes and performances, and works once a week at a bowling alley. Shari said 'he thinks it's the best job in the entire world and loves it.'
SHARI AND SAM
Shari Silverman and her son Sam pose together at home Feb. 10. Sam, who has autism and two chromosome disorders, uses self-directed services.
The life that Sam's built for himself is made possible through self-directed services, a disability care model through the Maryland Developmental Disabilities Administration (DDA) that allows him to choose his care services, programs and staff.
Through self-directed services, people with intellectual and developmental disabilities get to choose how they spend funding allocated to them by the state.
Participants pick what disability care services they receive, how they receive them and who they hire to provide those services.
Shari said self-directed services allow people with disabilities, including Sam, to be as 'independent as possible and live their own lives and have lives like everybody else.'
SHARI AND SAM
Sam Silverman stands in his room while looking at Lego sets. Sam has autism and two chromosome disorders, and uses self-directed services.
Over the last couple years, the number of people using self-directed services in Maryland has steadily increased from about 1,600 in 2022 to more than 3,800 in 2024, according to data from the Maryland Department of Health.
In Frederick County, there were 81 self-directed services users in 2022, then 101 in 2023 and 196 in 2024.
Most of the state's self-directed services users in 2024 — 1,933 people — were between 20 and 30 years old.
Prior to 2024, it was much easier for participants to access their state-allocated funding, hire workers they wanted, and be part of programs to engage with their communities, according to advocates.
In January 2024, the DDA's leadership changed. It started getting harder for participants to access funding, keep their desired staff members and get the care and community programs they want.
In November, the DDA officially implemented some policy changes for self-directed services, codifying the processes and challenges participants were facing for months beforehand, advocates said.
People using disability care services in Frederick County, 2022-2024
Staff graphic by Gabrielle Lewis
Ages of Maryland's self-directed services participants in 2024
Race of self-directed services participants in Maryland, 2022-2024
Rules dictating that certain staff members can't be related have forced some to choose between employees at a time when there are shortages of these professionals.
Others have been denied funding for services, even though the state already approved those programs for the participants.
People have been contacting their legislators protesting against these policies, the consequences of which have rippled across Maryland.
Shari Silverman said in an interview in December that the DDA's leadership is 'talking at us' rather than listening to people's input.
'They're putting so many restrictions on things that they're taking away the ability to self-direct in an easy fashion, and it's easy to give up or throw your hands up and say, 'All these hoops you want us to jump through, it's just too much,'' she said.
SHARI AND SAM
Shari Silverman looks through photo of her family at her home. Her son, Sam, has autism and two chromosome disorders, and uses self-directed services.
'It's a lot of work, and it's like we're not respected enough to listen and ask us our opinions or our take on some of the rules and regulations that ran out. We're just being told 'This is what you're doing.''
The Frederick News-Post has requested multiple times since Feb. 7 to speak with Marlana Hutchinson, who was appointed as the DDA's deputy secretary in January 2024.
Maryland Department of Health spokesperson Chase Cook said Hutchinson was unavailable for an interview. He answered questions on Feb. 28 that the News-Post had emailed for Hutchinson to answer.
Cook wrote that the changes will reduce processing delays and ensure care providers are paid in a timelier manner, although he didn't give specifics.
Additionally, he wrote, the changes 'will ensure that these taxpayer-funded services are delivered responsibly and with appropriate oversight, in accordance with state and federal authorities.'
'Together, we are actively working to engage with providers, advocates, and stakeholders to listen, collaborate, and find sustainable solutions,' Cook wrote in response to multiple questions.
Self-direction's history in Maryland
Maryland's self-directed services program was initiated in 2005, according to the Self-Directed Advocacy Network of Maryland (SDAN), an organization dedicated to championing these services.
If people are eligible for DDA services, they can pick one of two service models: traditional services, where people's care is overseen by provider agencies, or self-directed services, where people choose their services and staff.
If they want to self-direct, participants work with a coordinator of community services to create a Person-Centered Plan, which outlines the services they want, and a budget based on that plan.
Each Person-Centered Plan has to be approved annually by the DDA.
Participants have to manage their budgets and hire employees and vendors to provide their services.
In 2022, the Maryland General Assembly passed the Self-Direction Act, which required the DDA to 'leverage federal funding' — including funds from Centers for Medicare and Medicaid Services — to pay for self-directed services.
Carol Custer, an SDAN board member and Frederick County resident, said this act allowed self-directed services to access federal funds that users were supposed to be able to get but couldn't.
The act also made adjustments to individual-directed and family-directed goods and services.
Sam Silverman Self-Directed
Sam Silverman, left, plays video games as Afi Ketekou, one of Sam's support staff, works in Sam's home office. Afi has been one of Sam's support staff for almost three years.
These things are 'services, equipment, activities, or supplies' that help participants with a need or goal in their Person-Centered Plan, maintain or increase their independence, and foster community inclusion.
For example, an individual-directed and family-directed service could be a gym membership or a horseback riding program.
The Self-Direction Act added activities to what falls under this category, as well as all goods and services authorized by the Centers for Medicare and Medicaid Services.
The act also mandates that people who self-direct can choose to hire a support broker and that the DDA will provide participants any support broker services authorized by the Centers for Medicare and Medicaid Services.
The support broker helps a participant keep track of their staff and budget and knows the DDA's rules.
They're essentially the equivalent of a provider, according to Custer, who is a support broker.
Alicia Wopat, SDAN's board president, who lives in Baltimore County, said there have been issues since 2023 with participants' employees getting paid on time by fiscal management companies after submitting time sheets. These problems still haven't been fixed, according to Custer.
How self-direction changed in 2024
In January 2024, then-Maryland Department of Health Secretary Laura Herrera Scott, who left her role at the end of February, announced that Marlana Hutchinson would be the DDA's new deputy secretary for developmental disabilities.
About a month later, self-directed services users began having trouble getting their Person-Centered Plans approved and accessing their budgets, according to Wopat.
SDAN used to have meetings with the DDA on a regular basis. Wopat said the organization's last meeting with the prior DDA administration was Dec. 16, 2023.
Wopat said SDAN wrote to the new deputy secretary asking to continue meeting regularly.
She said they met only a few times throughout 2024. During one meeting, Hutchinson said no changes had been made to self-directed services, despite what advocates said they were seeing.
Previously, 'we would warn the department when we saw something happening that was maybe an unintended consequence ... and they would let us know when things happened, and we would work together to collaborate on a solution to whatever the issues were,' Wopat said.
'It was really working so beautifully, and this group' — the new administration — 'is just not interested in collaboration.'
Wopat said SDAN met with DDA leadership about a month before the administration announced in October there'd be policy changes to self-directed services.
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"It was really working so beautifully, and this group" — the new administration — "is just not interested in collaboration."
'We met in September 40 days before this massive thing came out,' she said. 'It was never mentioned.'
The changes to the Self-Directed Services Manual were officially implemented on Nov. 21, 2024.
Chase Cook wrote that the policy changes were supposed to go into effect on Nov. 7, but the date was pushed back to 'accommodate further discussions' with stakeholders.
He did not comment on SDAN's assertions that the DDA stopped meeting with SDAN regularly in 2024 and that the advocacy organization didn't know about the policy changes beforehand.
When asked why these changes were made, Cook wrote that the DDA 'clarified policies to improve quality of care and accessibility for self-directed services based on constituent and advocate feedback.'
The News-Post also asked if there had been any fraud among people who self-direct or their staff members, and if so, if that prompted the policy changes.
'It is The DDA's responsibility to ensure these taxpayer-funded services are delivered responsibly and with appropriate oversight, in accordance with state and federal authorities,' Cook responded.
Denied access to funds
Wopat compared the amount of money a participant is allocated to having a whole pie.
The 'slices' are different sizes depending on what people choose to spend their money on — but with self-directed services, now, it's hard for participants to even use their entire 'pie.'
Sam Silverman Self-Directed
Sam Silverman pauses while building a Lego set of the Eiffel Tower at his home on March 11. Sam builds a variety of Lego sets in his free time.
Custer said participants have not been able to access programming funding, like money for individual-directed and family-directed goods and services.
Compared to the traditional services model, where providers get paid the full rate for service, self-directed services 'gets it in pieces,' Custer said.
'First, you go for the wages of your employees, then you bill for any benefits you give them, then you bill for mileage,' she said. 'In each of these choke points ... the DDA has an opportunity to deny it, and that's what we're seeing is happening.'
Wopat, whose 30-year-old son self-directs his services, said one of his favorite activities is going to the B&O Railroad Museum in Baltimore. She did not want to disclose her son's name.
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"In each of these choke points ... the DDA has an opportunity to deny it, and that's what we're seeing is happening."
She said they were hoping a membership to that museum could be covered by individual-directed and family-directed goods and services funds.
Her son has trouble communicating. One of his goals is to get better at that through texting and being in spaces where he's interested in his surroundings.
On Dec. 2, the DDA sent a denial of 'four activities that he loves to do that are part of his actual approved plan,' including a B&O membership, Wopat said. She said they weren't given a reason for the denial.
The B&O Railroad Museum website lists an individual adult membership as $65 a year.
Custer said the DDA seems to not be counting these programs as parts of an approved Person-Centered Plan and is treating them like they're unnecessary expenses.
She said self-directed services participants have to prove to the DDA they don't have the money to pay for these programs to access funding — even if the programs are already part of an approved plan and budget.
Part of this process includes participants having to show their bank balances to the DDA.
Frederick County residents Steve and Janet Cobourn, who have a 26-year-old son who is autistic and self-directs his services, have run into this issue.
The Cobourns said their son used traditional services for about a year after exiting the school system before transitioning into self-directed services for greater freedom and flexibility. They did not want to disclose their son's name.
Their son moved out in December after indicating he wanted more independence. Like Sam Silverman, the Cobourns' son has support staff help him day-to-day as he lives on his own, and he also goes out to do community activities.
'What's most important ... [is that he's] been able to hire his own staff and people that he feels most comfortable with, people who are well-trained, who have taken the time to get to know him as an individual,' Janet Cobourn said.
To access their son's funding, the Cobourn family has had to provide supplemental information on top of the documentation they already need to submit. After that, they had to go through multiple rounds of clarification questions.
Steve Cobourn said something on his son's Person-Centered Plan was denied, and they were able to resolve the issue with the DDA eventually.
His son's plan was approved in September, but the issue wasn't fixed until November.
Restrictions on support brokers, wages
Custer said the DDA's policy changes have dramatically cut back what support brokers can do.
She said that support brokers now can't access information for participants without the clients being there.
'That person doesn't want to spend their time with me on the phone, going through why so-and-so didn't get paid. That's what they want to pay me for. It's just like, you don't sit with your accountant while they're doing your taxes,' she said.
'The support broker is really the only person on the team, professional on the team, who's there to advocate for that person and to help them navigate the program.'
It's also much more difficult for participants to give their staff raises.
Sam Silverman Self-Directed
Sam Silverman, left, walks out of the kitchen as Afi Ketekou, one of Sam's support staff, works in Sam's home. Afi has been one of Sam's support staff for almost three years.
Custer said participants could choose to use their budget just to pay employees if that's what they wanted. Because the participants can't give retirement benefits or health insurance, they'll sometimes give higher wages in lieu of benefits.
Now, Custer said, participants need DDA approval to give higher rates above the administration's 'reasonable and customary rates.'
The maximum hourly wage varies for different positions.
The maximum wage exception can also differ based on location. There are five counties — including Frederick County — that have a higher exception due to a higher cost of living there.
For a support broker, the maximum wage is $32.45 an hour. The maximum hourly wage exception rate — for a participant who needs to pay a higher wage — is $60.46 across the entire state, according to the most recent Self-Directed Services Manual.
For a nursing support service worker, the maximum wage is $64.90 an hour. The highest wage exception is $95.43 an hour for most of the state and $102.31 for counties with a higher cost of living.
'They want you, even if you're giving a raise to an employee that's been there for 10 years ... you have to post the position for three months, you have to interview at least five people, and you're supposed to prove to them that nobody would accept it at a lower rate,' Custer said.
Wopat said if someone found the perfect person who would be paid even $1 over the reasonable and customary rate, they couldn't hire them for three months.
At a time when there's a lack of support professionals, there might not even be five people applying.
'The biggest impact that I see is their ability to hire qualified staff when you have to go through that laborious process,' Custer said.
Steve Cobourn said the reduction of the support broker role concerns him and Janet Cobourn, because they're looking to the support brokers for guidance on the intricacies of self-directed services.
'For parents like us, there's some fear out there that without some of that support, it makes it more difficult for individuals such as us to be compliant to make sure that we're doing what needs to be done,' he said.
Choosing between staff members
The DDA also implemented a change that doesn't allow any participants' staff members to be related to the support broker.
More than one family member can be part of a participant's staff, as long as the support broker isn't a relative. Additionally, no relative of the support broker can provide any other service to the participant.
Shari Silverman said it took her family a long time to find the right support brokers for Sam — but someone on the support broker team happened to be related to Sam's nurse, who was hired long before the team joined the staff.
Silverman said she initially didn't know they were related.
'Now, I'm forced to choose between either of them and pick somebody else that I don't know or don't trust,' she said.
In another interview in February, Silverman said she had to find a new nurse and kept her support broker team.
However, because the team is a husband and wife, they were told they couldn't both work for Silverman's son, so she had to pick between them. She said she chose the husband.
Self-Directed Services
Travis Little, left, poses with his uncle Ed Little at the Littles' home in Emmitsburg. Ed uses self-directed services, and Travis is Ed's caregiver.
Ed Little, a self-directed services participant, said his entire staff consists of his family.
Little is 50 years old and has cerebral palsy. He's been self-directing his disability care services for about 10 years.
He lives with his sister in Emmitsburg, and his family comes to their house to take care of him.
'They completely take care of me — everything I need from getting in the wheelchair to eating to showering to bathrooming,' he said.
Since the DDA enacted the policy changes, he said, 'we've had to fight for everything we've got.'
'They [the DDA] pick to high heaven, and it's just so frustrating. Some days, I don't even want to deal with it,' Little said. '... They hide behind a desk. They don't come out and see what actually goes on. I've never seen these people.'
Self-Directed Services
Travis Little, left, talks with with his uncle Ed Little at the Littles' home in Emmitsburg. Ed uses self-directed services, and Travis is Ed's caregiver.
Little, Silverman and the Cobourns, along with thousands of other participants and advocates, have reached out to local state representatives to advocate against the policy changes.
On Nov. 19, hundreds of people rallied in Annapolis against the changes to self-directed services that went into effect just two days later.
Now, the governor's office is proposing millions in cuts to the DDA for fiscal year 2026 — including cuts to some valuable disability care services.
'I'm so frustrated, I would like to get a lawyer,' Little said. '... I am so upset and angry over this whole thing. I don't know what to do.'
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Coming next weekend: Part 2 — concerns about the state budget
