BLUFFTON — When Sophia Townes took her son, Jack, for his 12-month check-up, the pediatrician expressed concern because he had not yet spoken his first word, nor was he babbling or pointing.
At his 18-month check-up, Jack was still silent. So he began occupational, speech and physical therapy.
At his three-year check-up, he still had no words. Townes was advised to take Jack to the Medical University of South Carolina in Charleston for an autism screening.
“I’ll never forget that morning. We’re in Bluffton and we had to be in Charleston by 8 a.m., and my husband woke up with a stomach virus. And Jack was even vomiting and I’m like, ‘God, shoot me now,’” Townes said.
They walked into MUSC at 7:30 a.m. Eight and a half hours later, they walked out with their son’s autism diagnosis.
They had no idea what to do next.
Sophia Townes leads Jack, 11, outside to help her with farm chores on their family property in Estill on April 13, 2023. Jack is also autistic but needs less special care than his younger brother, Joseph. Laura Bilson/Staff
“We were just in this limbo phase,” Townes said.
Luckily, she had a friend whose son with autism had benefited from a life-changing therapy called applied behavior analysis.
Thrilled to have a promising lead, Townes searched for a behavior analysis provider within driving distance from Bluffton.
She was surprised to find only one. The provider’s waitlist was over a year long. And even if Jack were able to get an appointment, the family’s Blue Cross Blue Shield of S.C. policy would not cover the therapy.
The only recourse was to get Jack on Medicaid and wait for his name to make it to the top of the waitlist.
But at 3 years old, Jack was already a year beyond what many doctors consider the ideal age for a child to start behavioral therapy. With children on the autism spectrum, early intervention gives them the best chance of reaching their full potential.
The National Institute of Child Health and Human Development reported that, through early intervention, some children will make so much progress they will no longer be on the autism spectrum when they grow up.
But in South Carolina, early intervention is not an option for most parents. Moms and dads are having to wait a year or more just to get their child in for an autism evaluation.
One reason for the bottleneck is an increase in demand. In 2014, when Jack was diagnosed, 1 in 175 children in the United States was diagnosed with autism. Today, that number is up to 1 in 36.
“Overall, people are much more aware about autism. So when they see concerns, they are more likely to send those kids for evaluation, which obviously increases the demand,” said Dr. Laura Carpenter, a professor at MUSC who specializes in pediatric development.
Once a parent has a diagnosis, the next step is enrolling the child in Medicaid. The Medicaid enrollment process is so stringent that getting a child coverage can take six months to a year.
Then, with fewer than 70 behavior analysis provider groups in the state that accept Medicaid, the child must wait another year or more to begin receiving services.
Kayce Terry (left), the family’s babysitter, and Sophia Townes (right) chase Joseph Townes through the yard to stop him from unlocking the goat pen in Estill on April 13, 2023. He has a tendency to run off suddenly. As he gets older, he gets harder to catch. Laura Bilson/Staff
All this means, instead of getting their child therapy during her or his crucial early years, parents have to spend their time clawing through government bureaucracy while inching to the tops of yearslong waitlists.
By the time Jack began behavioral therapy, he had already celebrated his fourth birthday.
Low reimbursement rates
Despite his delayed start, after just a few months Jack was speaking.
“We started hearing the words ‘I love you’ for the first time ever,” his mother said.
But a year into Jack’s therapy, the provider sent a letter notifying Townes that it was dropping all Medicaid patients. The provider explained that the Medicaid reimbursement rates were so low, if it continued treating Medicaid patients, it would go out of business.
George Townes does farm chores while his son Joseph plays in the goat pen on their property in Estill on April 13, 2023. Laura Bilson/Staff
In behavior analysis, a board-certified behavior analyst works with parents to come up with a list of goals for their child.
“We basically try to understand how behavior is affected by the environment. And then we try and change the environment to change the behavior,” said Katie Wolfe, president of the S.C. Association for Behavior Analysis.
The analyst creates a therapy plan. Then a registered behavior technician implements the plan. It is the technician who spends the most time with the child.
In 2015, when Jack began behavioral therapy, S.C. Medicaid was reimbursing providers $13.58 an hour for technicians. At the time, it was the lowest reimbursement rate in the country.
Out of that $13.58, the provider had both to pay the technician and to put some money aside to keep the lights on.
Since 2015, the S.C. Department of Health and Human Services has been steadily increasing the reimbursement rate. Today, the reimbursement rate is up to $45 an hour for technicians. But in the neighboring states of North Carolina and Georgia, technicians who work in the child’s home are reimbursed over $70 an hour.
As for analysts, the Medicaid reimbursement rate in South Carolina is $85 an hour, while North Carolina reimburses its analysts $112 an hour and Georgia up to $146.
This discrepancy in pay is a major contributor to the lack of providers in the Palmetto State.
Wolfe, who teaches applied behavior analysis at the University of South Carolina, said she struggles to get her students to stay in state after graduation.
“It’s hard for them to justify providing services in South Carolina when they can go to a neighboring state and get higher reimbursement rates,” Wolfe said.
Some of the big providers are able to operate in South Carolina only because they have a diverse portfolio of payers to support them.
Positive Behavior Supports Corp. has locations throughout the Southeast. Regional coordinator Ashley Belt explained that she is able to offer services in S.C. because she can offset the cost with the higher reimbursement rates she gets in neighboring states.
Bright Light Behavioral provides behavior analysis in the Lowcountry, Greenville and across the border in Georgia.
Three years ago, Bright Light stopped accepting S.C. Medicaid due to poor reimbursement rates. But in 2022, when South Carolina’s rate was raised to $45, Bright Light started taking Medicaid again.
In addition to offsetting the cost of doing business in the state with Georgia’s reimbursement rates, Bright Light accepts private insurance. However, owner Caitlin Harvey is seeing a troubling trend in which private insurance carriers are taking cues from Medicaid.
“Some commercial payers, like United and Blue Cross Blue Shield of South Carolina, will try and match the Medicaid rate, or just go a dollar or two higher, which is frustrating,” Harvey said.
Joseph grabs a rabbit figurine and runs upstairs before his oldest brother, Russell, can stop him during their dinner in Estill on April 13, 2023. Joseph likes to collect items of similar categories and keep them together. Currently, the hiding place is a cupboard in an upstairs hallway. After losing track of time while taking care of the younger two boys’ evening routines, the family ordered takeout. Laura Bilson/Staff
Back in 2015, when Townes was notified that her son’s therapist would no longer be accepting Medicaid, her Blue Cross Blue Shield of S.C. plan offered zero coverage for behavior analysis.
But Jack was making such good progress, Townes and her husband decided, in lieu of paying their mortgage, they would go out of pocket to continue his therapy.
Then, in 2016, they had another son, Joseph, who was also diagnosed with autism. Townes estimates they went out of pocket $300,000 for both their sons’ autism treatments.
“Never did I ever imagine that we would have to make the choice between paying our mortgage and paying for our sons’ therapy. But that’s what happened,” Townes said.
In 2019, the bank foreclosed on their home.
Waiting on the perfect diagnosis
In addition to enduring long waitlists to get an evaluation, some parents find a medical doctor’s diagnosis is not always enough for Medicaid or private insurance companies.
Two weeks before Megan Garcia Baul and her family moved from Maryland to the Columbia suburb of Blythewood, a pediatrician diagnosed her then-4-year-old son with autism.
When she arrived in South Carolina, she followed the pediatrician’s recommendation and tried to get her son in for behavior analysis. But her insurance carrier told her that her son’s diagnosis was not suitable; therefore, the carrier would not cover any autism-related services.
“Essentially, they told us he wasn’t autistic enough,” Baul said.
Russell, 13, pats his younger brother, Jack, on the head before taking him for a ride in an ATV around their family’s property in Estill on April 13, 2023. Russell is not autistic and helps take care of his brothers. Laura Bilson/Staff
Had Baul’s son been under 3 years old, he would have been eligible for a Medicaid program called BabyNet. Unlike traditional Medicaid and private insurance carriers, BabyNet will offer a child coverage after only a provisional autism diagnosis.
“BabyNet is a really great opportunity for families who have children who are showing the signs of autism to start getting those early intervention services,” said Belt.
The problem with BabyNet is, at midnight on the child’s third birthday, all coverage ceases.
“If they don’t have an evaluation, they turn three and that’s it, we cannot continue with ABA services,” Belt said.
Since Baul’s son was too old for even the temporary solution of BabyNet, she was advised to take him to a developmental pediatrician to have his diagnosis amended to suit the insurance carrier.
This was in the summer of 2021. She was able to find only two developmental pediatricians in her area. The earliest appointment she could get was for more than 20 months later, in May of 2023.
So she put her son in the car and drove 500 miles back to the pediatrician in Maryland. The doctor was able to see him right away and modify his diagnosis to meet the insurance carrier’s guidelines.
Had she not had a pediatrician in Maryland, she would have had to wait.
“That would’ve been two years of my son being without any help or any services,” Baul said.
Even though Baul’s son had a private insurance plan, there were gaps in his coverage, which, ideally, Medicaid would fill.
Baul started the Medicaid enrollment process in June of 2021. It took until early 2022 for her son to be accepted.
“The reason my son has gotten any of the things he’s gotten is because I’ve had to fuss. I’ve had to argue. I’ve had to show up in person. I just don’t understand why I have to fight so hard for my child,” Baul said.
Sophia and Russell Townes step away for a moment to feed their outdoor cats on their front porch in Estill on April 13, 2023. They have two indoor cats and nine outdoor cats that roam the property. Sophia says the number of cats keeps growing because they heard she’s a “sucker” and will feed all of them. Laura Bilson/Staff
Baul’s story is not unique.
Regina Alderman’s son was kicked out of multiple day cares in Beaufort. By the second grade, Beaufort County school officials were threatening to expel him for disruptive behavior and an inability to focus.
“I was leaving work every day to go to the school. I was crying. I mean, it was just horrible,” Alderman said.
When her son was 10, her pediatrician recommended she take him for an autism evaluation. Faced with long waitlists in South Carolina, Alderman crossed the border into Georgia and paid out of pocket for her son’s autism diagnosis.
“Then, in my brain, I thought, I have this diagnosis. I’m going to get all this help. I can get him on Medicaid now,” Alderman said.
But the out-of-state diagnosis did not meet Medicaid’s standards, so her son was denied coverage.
When Alderman reapplied, she devised a plan where she set a notification to go off every three weeks and, each time it did, she called Medicaid to get an update on the status of her son’s application. She called every three weeks for a full year before he was approved.
Her son is now in his sophomore year of high school. He is earning straight A’s and plans to go to college to become an orthopedic surgeon.
The search for a solution
Although there is not yet a concrete solution to address all the issues surrounding autism care in the state, officials have acknowledged a lot of work needs to be done.
In 2021, Robert Kerr stepped into the role of director of the S.C. Department of Health and Human Services, which oversees Medicaid. Within a year, he raised the hourly reimbursement rate for registered behavior technicians from $34.56 to $45.
He recognizes the agency still has a long way to go.
“We are looking at all aspects of this. It’s a daunting challenge, honestly,” Kerr said.
His agency will have the help of the Palmetto Autism Study Committee, which the state Legislature established for the 2022-23 fiscal year. The committee will work to identify the issues delaying or preventing parents from getting their children the care they need.
“The committee was developed to help stand up some solutions to these issues,” Kerr said.
South Carolina Senate Minority Leader Brad Hutto, D-Orangeburg, sits on the committee. He said that although the committee has yet to reach any conclusions, members are in the process of gathering information to help them determine what the issues are.
The committee includes both providers and parents. They meet monthly and aim to have a report filed by the end of the year.
“We are making progress in understanding the nature of the problems. It’s too early for me to say we have a solution. But, hopefully, we will have one and it will be in our report,” Hutto said.
George Townes picks up his son Joseph to take him back downstairs after he had run off in their family home in Estill on April 13, 2023. Joseph is supervised by one of the older family members or their babysitter at all times. Laura Bilson/Staff
Meanwhile, Townes and her family relocated to a farm in Hampton County, where the cost of living is more affordable. She left her job as a teacher and started volunteering for the Lowcountry Autism Foundation. She has since become the director of programs and services.
The foundation has a presence in both Bluffton and Charleston. It provides support and guidance for parents of children with autism and teaches them how to become their child’s best advocate.
“Unfortunately, there are some parents who just kind of sit and wait on the sidelines for help. I’m here to say, you’ve got to get out. You’ve got to do your part in advocating for your child, because no one else is going to do it for you,” Townes said.
Five days a week she drives Jack, now 11 years old, to a Catholic school in Bluffton.
Townes home-schools Joseph, now 6, whose autism is more severe than his brother’s, so she can have flexibility to work around his therapy schedules.
She must keep a constant eye on him.
All the doors to their home are latched shut to keep Joseph from fleeing when Townes turns her back. She has a special car seat, which he is not supposed to be able to break out of, that Medicaid helped pay for.
Sophia Townes negotiates with Joseph in their kitchen in Estill on April 13, 2023. Although he is technically nonverbal, he has learned a handful of words to communicate what he wants. He said “ice cream.” Sophia’s dilemma is that it is very close to his bedtime, but rewarding his communication is more important. Ultimately, he gets a scoop. Laura Bilson/Staff
Recently, she was coming home from the grocery store and left Joseph in the car while she unlocked the door to bring the groceries in.
“I have to have a hand on him. I can’t just say, ‘Walk with Mommy,’” Townes said.
After unlocking the door, she turned around and was startled to see Joseph standing in the driveway. Somehow, he had managed to break out of the car seat.
He ran for the barn. The door had a padlock on it, but he was able to slide through a crack between the bottom of the door and the ground. The crack was too small for Townes to fit through. She raced into the house to find the key for the padlock.
While she was inside scrambling, Joseph began scaling the barn wall. By the time Townes swung the barn door open, he was two stories up, clinging precariously to the wall.
Without thinking, Townes rushed over. She reached up as high as she could, grabbed onto the wall and pulled herself up. One step at a time, she climbed towards her son. For her, there was no other option.
Jack plays a virtual reality game while Joseph plays on his iPad in Estill on April 13, 2023. Laura Bilson/Staff
This content was originally published here.