“The ball is scary,” pediatric physical therapist Jillian McGriff said as she sat Hunter Trefzger, 5½, on an exercise ball.
She steadied him as he reached, one by one, to grab rings held out by his mother, Sarah, and then tossed them one at a time toward a ring stand.
“This is easy,” Hunter said, surprising McGriff.
“Thank you for being brave,” she responded.
“This is my favorite thing now,” Hunter said.
Hunter’s “favorite thing” is a challenge for any child, let alone one with dwarfism.
Hunter, of Bloomington, is a little person. For Hunter, that means he’s 36 inches tall, his arms and legs are short (he has a 10-inch inseam), his center of gravity is lower, he’s not physically proportionate and his speech is slightly impaired.
Thanks to therapy, his mother and his therapist at Marcfirst in Normal — where he was receiving physical therapy on March 20 — think he will be ready for kindergarten in August.
That almost didn’t happen. He was without therapy for six months after Easterseals Central Illinois cut ongoing physical, occupational and speech therapy for children on Medicaid and Medicaid managed care because of increasing state mandates and low Medicaid reimbursement; about 100 children lost services.
“I wasn’t necessarily mad at Easterseals,” Sarah Trefzger said. “I was mad at the state of Illinois. How could people leading the state of Illinois let it get so bad? How could the state let it get so bad for people who are fragile?”
Trefzger doesn’t care which politicians are at fault. She cares that her son and others on Medicaid and medically fragile are among those paying the price.
Hunter resumed physical therapy in February at Marcfirst’s SPICE (Services for Parent Infant and Child Education) program. But he’s on a waiting list to resume occupational and speech therapy.
“It’s not just about Hunter,” Trefzger said. “It’s also about the hundreds of other kids being affected because they need services and aren’t getting them.”
Marcfirst’s SPICE program has added 60 to 65 children for therapy services (bringing the caseload of children receiving ongoing services up to 212) and hired two physical therapists (including McGriff), a feeding therapist, three speech pathologists and a licensed clinical social worker, in part because of the cut at Easterseals, said Marcfirst CEO Laura Furlong and SPICE Director Christy Kosharek. Some of the therapists are full time, some are part time, and some, like McGriff, had been with Easterseals, Furlong said.
The other children may be getting therapy elsewhere or may be going without services for the time being.
“We have about 50 kids now waiting for services and about half had been receiving services at Easterseals,” Kosharek said.
“We want all children to receive services, regardless of the family’s ability to pay,” Kosharek said. “We are pleased to provide services but it’s placing a financial strain on us.”
Hunter was born on Nov. 3, 2011, with achondroplasia — the most common form of dwarfism — a genetic condition that results in disproportionately short arms and legs.
He has had 40 surgeries. A major one, when he was 5 months old, was a tracheostomy — a tube inserted into his windpipe to open the restricted airway and enable breathing.
When he was a year old, he had spinal decompression surgery so he wouldn’t be paralyzed from the neck down. At 3½, he had surgery to pull his tongue forward so it wouldn’t block his airway while he was sleeping.
“That allowed them to remove the trach,” his mother said.
When he began physical, occupational, speech/feeding and developmental therapy at the Easterseals Bloomington center, 2404 E. Empire St., Bloomington, at 9 months of age, “he needed 100 percent support,” his mother said. “He couldn’t sit up. He couldn’t roll. He couldn’t hold his head up.”
“He couldn’t control his own body,” said McGriff, who has been Hunter’s physical therapist since then. “We worked with him to hold his own head up, to sit independently, to crawl and to walk.”
“They were phenomenal,” Trefzger said. “Hunter would not be the person he is today if he didn’t receive therapy.”
But last May 25, Easterseals Central Illinois announced the cut, scheduled to take effect within 90 days.
“The reason was because the state changed the requirement regarding the amount of administrative work required for reimbursement,” President Gina Mandros explained. “The amount of reimbursement didn’t reflect the additional administrative operational costs.”
Medicaid reimbursement already was low, Mandros said. “It is, at best, 30 percent reimbursement,” she said.
“It’s very frustrating that there are rules beyond our control and they affect kids like Hunter,” Mandros said. “Hunter is a wonderful kid and was making amazing progress here. He was among many kids we had to let go off our caseload. It was a difficult time for everyone.”
The move resulted in a “substantial cost savings,” said Mandros, who didn’t have a dollar figure available. Easterseals Central Illinois eliminated 14 positions earlier this year.
But Easterseals retained children on Medicaid and Medicaid managed care for physical, occupational and speech therapy evaluations; for periodic check-ins and reassessments; for post-operative therapy; and for autism and cortical visual impairment services, Mandros said.
“Easterseals remains strong in our community,” Mandros said. “Our demographics may be different but we’re helping children to live, learn and thrive in our community.”
Some families called Marcfirst, which is continuing to take children on Medicaid.
Furlong said “The state budget continues to be an ongoing challenge for us.” She cited stagnant reimbursement for therapy for 10 years.
“But we’re committed as an organization to identify alternative sources of income to support all our services,” Furlong said.
Hunter lost services in late August and his mother tried to keep him active.
“For the next six months, it was sad for Hunter,” his mother recalled. “He’d ask when he could go to Easterseals to see his friends.”
In late January, McGriff was let go at Easterseals but was hired at Marcfirst SPICE and called Trefzger.
Hunter resumed physical therapy Feb. 8. “He’s making a lot of progress,” McGriff said.
“Since he resumed services, there is a marked improvement in Hunter,” his mother said.
He remains on a waiting list for occupational and speech therapy. Trefzger hopes those services resume soon. “His speech has regressed,” his mother said. “He doesn’t put his tongue in the right spot when he’s speaking. It’s difficult for him to articulate certain sounds so sometimes it’s harder for people to understand him.”
Short-term, Trefzger hopes that Hunter — who attends early childhood education at Sugar Creek Elementary School — will thrive in kindergarten.
Long-term, Trefzger wants to return to school to become an aroma therapist and wants Hunter — who will be no taller than 4 feet 6 inches — to do anything he wants to do.
“Hunter makes this a heck of a lot easier because he’s happy,” Trefzger said.
After the March 20 therapy session, Hunter was asked what he thought of therapy.
He smiled. “I like all this stuff.”
Source: The (Bloomington) Pantagraph, http://bit.ly/2n5R3ti
Information from: The Pantagraph, http://www.pantagraph.com
This is an AP-Illinois Exchange story offered by The (Bloomington) Pantagraph.