Shauna Tunder launched into what sounded like an oft-delivered spiel when asked to explain her 10-year-old daughter, Miranda.
“I like to say she has a main course of severe ADHD and developmental delays, with a side dish of anxiety,” Tunder said. “It makes for an interesting combination.”
Tunder’s tone was lighthearted as she detailed the challenges her daughter faces. But her voice grew serious when talk turned to the strain of providing round-the-clock care for Miranda, particularly in the afternoons and on weekends when the aide provided through Lincoln Elementary School is not with her.
Having a certified caregiver who could take on some of those responsibilities would be wonderful, Tunder said.
But the cost of such care rendered that option impossible for the Tunder family, who already have what Tunder described as a “fine-balancing act with our finances” because of Miranda’s many doctors. Her husband’s recent cancer diagnosis cast their precariously balanced budget into pieces.
“His income is going to be sliced in half with taking time off of work, and then there are the treatment costs,” Tunder said. “We already have quite a debt load going on, and with this ... I just don’t know. I feel like I’m just trying to keep my head above water. “
At least part of their financial burden could be alleviated under new waiver programs through the Maryland Department of Health’s Developmental Disabilities Administration (DDA). The state agency offers waivers to help people with disabilities and their families pay for in-home caregivers, employment services and other support. The funding comes from the Maryland General Assembly and, for applicants who meet certain eligibility requirements, federal Medicaid program funding.
The DDA recently received the go-ahead from the Centers for Medicare and Medicaid Services to add 800 waivers to its existing pool.
The added waivers, funded under Gov. Larry Hogan’s fiscal 2018 budget, aim to reduce the long waiting lists that have historically plagued the agency’s services — more than 5,100 people long for the last five fiscal years, according to information the DDA previously shared with The Frederick News-Post. As of Wednesday, there were 5,518 people on the waiting list, according to the DDA.
Due to the waivers’ limited availability, applicants are ranked in order of priority. The crisis resolution group is reserved for the most dire situations: homelessness, abuse, neglect or loss of a primary caregiver. The crisis prevention group includes applicants who are at risk of moving to the crisis resolution category in the next year, or those whose caregivers are 65 or older. All other eligible applicants who demonstrate a current need for services are grouped as current requests.
Fiscal 2017 was the first year the state served all applicants in the crisis resolution category, as well as some crisis prevention applicants, according to Bernard Simons, the agency’s executive director. In prior years, funding covered only applicants whose situations met the crisis resolution criteria, Simons said.
The new waivers, coupled with the ones, will be distributed based on this priority system, reaching the current request category for the first time in the agency’s recent history. Four hundred of them, known as Family Supports Waivers, will be reserved for families with children with disabilities. The other 400 Community Supports Waivers have no age restrictions.
Simons called the decision to target families with children an agency priority, underscored by the community feedback received as the agency worked to develop the program.
Schools provide supports, including personal aides, to disabled children and young adults until they turn 21. But that still leaves many families struggling to find and pay for evening and weekend caregivers.
“You’ve got children who get out of school at 3 or 4 [p.m.] and Mom and Dad might work till 5 or 6 [p.m.],” he said. “That means they’re paying out of pocket [for after-school care] or decreasing the number of hours they work.”
“In my mind, this gives the opportunity for families to stay fiscally viable and stable,” Simons said.
Kelly Presnell, the YMCA of Frederick County’s outreach and inclusion director, echoed his comments. Many of the families she works with through the YMCA summer camp for children with disabilities, Kids Unlimited, face financial and scheduling constraints during the academic year when the camp is not in session.
“It’s not a minimum wage, McDonald’s drive-thru type of job,” Presnell said of the cost of a private caregiver.
In lieu of such support, some families send their children to “mainstream” after-school programs, but that’s not an option for those whose children have more severe disabilities. Even children who can participate in programs not specifically designed for children with disabilities lose out without the one-on-one, certified care that can help them achieve developmental benchmarks.
“I have some kids that are happy just bouncing a ball all afternoon,” Presnell said. “A camp counselor can do that. But getting them engaged in other activities is what they really need that extra support for.”
Presnell wasn’t sure how many of the families whose children attended Kids Unlimited were already on the state waiting list, but imagined many who were not yet would be interested. Tunder was among them.
She previously dismissed the idea after talking to other families and learning about the sometimes 10-year-plus wait.
“That sounds like a more viable option,” she said. “We could certainly use the help. Anything, really.”