‘What did I do to my child?’: As program for kids with disabilities suffers funding shortage, parents face hard decisions

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Aliyah Foster (center) on the couch with her older sister, Elizabeth, and Layla, her twin. Aliyah has developmental delays that qualified her for services through Mississippi’s First Steps program.

Julie Foster felt cautiously optimistic when she answered the phone last November and heard her daughter’s early intervention coordinator on the other end. The Fosters had moved from Chicago to DeSoto County the month before, and while the change was hectic — even by long distance move standards — she loved her new job, a relief since it had brought them down here.

Her daughter’s transition from Illinois’s early intervention program to one in Mississippi had progressed smoothly, at least at first. Aliyah has multiple developmental delays and qualifies for a range of therapies through a provision of the Individuals with Disabilities Education Act. This federal program guarantees a variety of therapies to all children under age three who qualify. In Illinois, this meant weekly sessions with a special instructor plus speech, physical, occupational and feeding therapy — a total of 25 therapy hours every month.

But in Mississippi, the service coordinator told her, Aliyah had qualified for just three of the services she’d had in Chicago. And two — speech and occupational therapy — would be offered only twice a month. In total, Aliyah would receive one-third of the therapy she’d had before. Foster hung up the phone and sobbed.

“I kept saying, ‘Oh my God, what did I do to my child?’” Foster said. “I’ve moved her to a place where she can’t get the help she needs.”

What’s worse, Foster said, is that the speech and occupational therapy never materialized, despite numerous calls from Foster and a federal requirement that Mississippi provide them. In late March, Aliyah turned three and aged out of the program. Mississippi had only provided her with a third of the services they’d promised  her.

“We’d imagined we’d have the same services (in Mississippi). I guess that was naive,” Foster said.

The Fosters are not alone. Last month, Mississippi Today reported that an administrative miscommunication had forced Mississippi’s early intervention program, First Steps, to delay services to hundreds of children.

But conversations with several First Steps parents, and current and former employees of the Department of Health, which administers the program, paint a picture of a program that delayed — and sometimes never delivered — federally mandated services to some children long before the administrative hangup.

The reason, according to these employees, is that the program is critically underfunded and understaffed. Some service coordinators, who match children with therapists and monitor their progress, report caseloads of 90 to 100, more than double the recommended caseload.

Meanwhile, these therapists are getting harder to find. Reimbursements for appointments are often delayed, according to current and former First Steps therapists who spoke with Mississippi Today. And the rates the program pays remain low compared with Medicaid and neighboring states, forcing several therapists out of the program. This means parts of the state don’t have enough — or at times, any — therapists providing the services this program guarantees.

“It’s a mess,” said one longtime service coordinator who spoke to Mississippi Today but asked that her name not be used in the article. “When I first started, we had lots of different agencies that contracted with us. And then, as they’ve not gotten paid, they’ve decided they don’t want to work with us anymore. So the providers who are available in many areas are very few and far between.”

States are not required to participate in an early intervention program, but all of them do. Under federal rules, states must ensure that children begin their recommended therapies within 30 days of qualifying.

Oscar Stearns listens to music on his headphones. Oscar, who has severe cerebral palsy and is visually impaired, loves listening to music, his mother said.

Oscar Stearns has been waiting to be matched with his special instructor for a year. Born 15 weeks premature, the 2-year-old has severe cerebral palsy and a vision impairment. When his family moved to Mississippi in July, also, like the Fosters, from Chicago, Oscar qualified for occupational and physical therapy, feeding therapy, vision therapy, and a special instructor to work with him and his family at home.

That was last summer. In February, a district coordinator for Mississippi’s Northern Public Health Region wrote to Oscar’s mother, Susan Stearns, that, “due to some unforeseen circumstances,” First Steps did not have a special instructor in Oxford, where they live. She said the agency was working on finding someone and would let her know when they do. Stearns said her family is still waiting.

“The law can say whatever it wants, but that won’t make it happen,” Stearns said.

‘It became a nightmare’

Therapists who’ve left Mississippi’s First Steps program cite multiple reasons, from reduced reimbursement rates for appointments to billing delays to a decision to transition all contracted workers for the state into independent contractors. But all amount to the same thing: a funding shortage.

“It became a nightmare,” said Rita Hall, a speech therapist who contracted with First Steps until 2016, when she said the billing requirements for independent contractors became too onerous. “It was almost impossible to deal with everything unless you’re Wonder Woman.”

Doctors have told Susan Stearns that with the right therapy regimen, Oscar might eventually sit up unassisted or even walk. Both abilities would dramatically increase his life expectancy. And knowing this, his mother said, makes these service delays even more agonizing.

Aliyah Foster (left) sits in the grass with her older sister, Elizabeth, and Layla, her twin. Aliyah has developmental delays that qualified her for services through Mississippi’s First Steps program.

“We were told again and again that these are the years that are the most important for accelerating the possibilities for his life,” Stearns said.

Stearns is referring to neuroplasticity, the idea that brains of very young children are better able to grow and forge new connections than brains of older children. This means shorter, less expensive therapies in early childhood often get better results than longer, more expensive therapies later on.

“If the state invested in early intervention, we’d see in less than five years drastic reductions in the number of special ed referrals (once children enroll in school),” said Cathy Grace of the University of Mississippi’s Graduate Center for the Study of Early Learning, which researches the impact of educational programs on young children.

“Early intervention is not an entitlement,” Grace said. “It’s an investment.”

But for these parents, it’s also a ticking clock. That’s why Stearns and her husband have discussed moving just over the state line to Tennessee, which puts ten times more state funding into its early intervention than Mississippi. Julie Foster and her husband have also discussed relocating. In June, she gave birth to Aliyah’s younger sister, Sophia. If Sophia needs early intervention, Foster said they would “a hundred percent” consider a move up to Memphis.

“You do what you have to do to get your kid the services they need,” Foster said.

A lack of investment

Mississippi’s top officials have acknowledged how crucial these first few years are for a child’s development.

Gil Ford photography

Gov. Phil Bryant

“In the first five years of life, 90 percent of the brain is developed. School readiness means that children enter school ready to benefit from early learning experiences in order to be successful. Families, early childhood providers and community partners must work together to provide safe and healthy experiences that will ensure that all of Mississippi’s children are ready to enter school ready to learn,” Gov. Phil Bryant said in a statement on the website for Mississippi’s State Early Childhood Advisory Council

But Bryant’s support has not translated into funding.

This year, Tennessee budgeted $12.9 million in state funding for its early intervention program. But Mississippi spent just about one tenth of that — $1.3 million — on its own program, despite having a population roughly half the size of its neighbor to the north.

Other surrounding states also invest much more into their early intervention programs. Alabama’s population is 60 percent larger than Mississippi’s. But this year Alabama will spend $8.1 million on early intervention, five times more than Mississippi spent. Louisiana, which has a slightly smaller population than Alabama, will spend $11.7 million, or eight times what Mississippi spent.

Associated Press

A child receiving therapy in Chattanooga, Tenn.

These disparities add up at every level of the program. Five years ago, Mississippi narrowed its eligibility criteria, from a 25 percent delay in one area of development to a 33 percent delay in one area and a 25 percent delay in two or more. Currently, 32 states have a lower threshold than Mississippi for early intervention eligibility. One of those is Illinois, where Oscar Stearns and Aliyah Foster were initially diagnosed.

The Department of Health said the change was made to “better align MSDH’s definition of developmental delay with the one used by (Mississippi Department of Education, which operates IDEA part B) for children 3-9 years of age.”

But others said there was a different reason.

“Money,” said Michael Cruthird, who retired in 2015 after more than two decades as the district coordinator on the Coast and was part of the conversations about changing First Steps eligibility. “… You look better if you have a smaller pool (of children) to draw from. Things run more smoothly. But it all comes down to money. If we had unlimited resources we’d serve more children because it makes more sense.”

Therapists who contract with Mississippi’s First Steps also earn significantly less than providers in neighboring states. First Steps pays special instructors $25 for an hour-long session in a patient’s home. In Louisiana, those instructors make $59.80 for the same session. In Alabama, it’s $36. In Tennessee, it’s $80 — more than triple what the same provider would earn in Mississippi, according to data obtained directly from each state’s early intervention program.

“I enjoyed it, and the employees I had working for me loved working with the babies, but it just wasn’t profitable at all,” said Joyce Bates, who ran a clinic offering physical, occupational and speech therapy for First Steps.

Service coordinators, who work directly for the Department of Health, receive $17.50 per hour compared with $21.67 in Louisiana, and many juggle more than two times as many families as coordinators in that state. In Alabama and Louisiana, service coordinators have an average caseload of 45 families. In Mississippi, the average caseload for coordinators is 60 families, according to data from the Department of Health.

But a district coordinator who runs one of Mississippi’s nine regional First Steps programs said that several service coordinators working under her manage about 100 families, more than double the optimal caseload of 45. The service coordinator who spoke with Mississippi Today works in her office and confirmed this, saying her own caseload is currently about 90 families.

“That’s not sustainable,” Cruthird said, adding that quality service is bound to suffer.

Service coordinators are required to make contact with all of their families and therapy providers on a monthly basis, and physically meet with them once a quarter. In rural parts of the state, one coordinator will be responsible for children across three or four counties.

“I’m keeping the road hot,” the service coordinator said.

Since service coordinators are responsible for matching children with therapists, their backlog can become the program’s backlog. Currently, 2,045 children receive services through Mississippi’s First Steps. Another 1,009 — half as many — are either waiting to be evaluated or matched with therapists, though the Department of Health was not able to confirm how many of those kids have been waiting longer than the federal time frame.

“I currently have kids waiting to be evaluated who will age out (of early intervention) in the next three months. So by the time I get them evaluated, they’ll be going into the schools,” said the service coordinator. “We have cases going over 90 days. That’s breaking federal regulations. Sometimes it’s parents who can’t make it happen in time because they have work or they just don’t call you back — there’s definitely exceptions. But there are issues on our end.”

“Would fewer families fall through the cracks if we were compliant (with caseloads)?” The service coordinator sighed. “Probably.”

Editor’s note: The next installment of this series will be published next week and focus on the significance of First Steps and possible solutions to the issues facing the program.