TUPELO • Eight-year-old Paul Scott has been waiting three years for intensive autism treatment.
The Tupelo boy who has very limited verbal skills gets some services through his school, but like many children with autism could benefit from intensive applied behavior analysis therapy.
“I need help in order to help Paul,” said his mom Haniyyah Hanzalah, who worries about his future.
He is one of hundreds on a waiting list at the Autism Center of North Mississippi in Tupelo.
“We have 230 families that have reached out to us, and we have not been able to serve,” said Brittany Cuevas, executive director for the Autism Center of North Mississippi.
The center, like others in Mississippi, is caught between exceedingly high demand for trained professionals in the field and Medicaid reimbursement rates that lag behind neighboring states.
“Medicaid rates do not cover the cost of providing care,” and the nonprofit centers rely on grants and private donors to fill the gaps, Cuevas said.
To keep the doors open, the Golden Triangle Autism Center has to limit how many Medicaid clients it takes on.
“For every one Medicaid client, we have to have five commercial insurance clients to cover the cost,” said Amber Orman, director of the West Point center.
The supply of trained professionals to plan and supervise applied behavior analysis-based treatment is far exceeded by the need.
“We think there are 11,000 people with autism in Mississippi,” said Jim Moore, director of autism solutions at Canopy Children’s Solutions in Jackson and the chairman of the Mississippi Autism Board. “We have less than 60 providers.”
The research has shown that applied behavior analysis-based therapy can radically change the trajectory for a child with autism, Moore said. Especially if children with autism can receive intensive therapy early, they will need much less support in special education services in public schools and in social services as adults, saving the state money in the long run.
“The Centers for Disease Control and the American Medical Association not only consider it the best practice, but the gold standard,” Moore said.
The Medicaid reimbursement, which runs just over $30 an hour, doesn’t stretch to cover the costs, Moore said. States with similar demographics to Mississippi have Medicaid rates that are nearly double that level. As a result, there are currently only five autism centers accepting Mississippi Medicaid – the centers in Tupelo and West Point, Canopy in Jackson and two on the Gulf Coast.
“It’s extraordinarily hard not only to give that best treatment but keep the lights on,” Moore said.
The Division of Medicaid, which increased rates for autism services in July, uses a nationally recognized actuarial firm based on relevant factors such as provider salaries, overhead costs and associated expenses, said spokesman Matt Westerfield.
“The Mississippi Division of Medicaid certainly recognizes the great need for autism services in this state and that the shortage of specialized providers is very real,” Westerfield said. “We encourage the training of more practitioners and are proud that we became the first insurer in Mississippi to cover autism services up to age 21 beginning in 2017.”
Training more masters level behavior analysts, who plan and supervise the treatment, and the registered behavior technicians, who deliver the treatment, will be hugely important, Moore said. But without a reimbursement structure that makes it possible for them to make a living in Mississippi, the state will lose many of them.
Autism advocates are hoping that Medicaid will consider using provider data from Mississippi clinics and incorporating more codes that reflect the work that is mandated but not currently reimbursed when new permanent codes are set in January.
“We need to bring a lot of people around the table to discuss it,” Moore said.