Five tiny fingers unfurled from a tight fist. Then, 23-month-old Mackenzie Williams rotated her shoulders and stretched her arms into the air.
Mackenzie needed a physical therapist to perform the exercises vital to her health and growth because she has a condition that causes developmental delays, reduced muscle tones and seizures.
The loving persistence of her mother, Morcy Morrell, ensures that Mackenzie receives daily therapy sessions and specialized care at PSA Healthcare, a physician-prescribed extended-care center for medically fragile children and infants in Grovetown.
Other children aren’t receiving such care after changes were made to Medicaid enrollment.
In recent months, PSA Healthcare and similar centers in metro Atlanta and across Georgia have reported that services for special-needs children have been cut – or in some cases denied – leaving parents and advocates to fight for their well-being.
In the past year, enrollment at PSA Healthcare, on Park West Drive, has dropped from 36 children and infants to 25, Director Melissa Chapel said.
The center attributes the losses to arbitrarily applied qualifying criteria to determine children’s nursing level of care, thus their eligibility.
Some children affected, Chapel said, were those applying for a special waiver – called a Katie Beckett waiver – that provides Medicaid benefits to certain disabled children even though the parent’s income is too high to qualify for Medicaid.
This month, a newborn from the neonatal intensive care unit who has silent aspiration, a condition caused by swallowing problems, was denied Medicaid coverage for treatment at PSA Healthcare. The center allowed the infant to receive free care during the parents’ appeal process.
“We’re spending a lot of our time appealing and going back and forth to find out why our kids aren’t getting these services,” Chapel said.
The Georgia Department of Community Health, which administers Medicaid, said that no changes were made to qualifying criteria for a Katie Beckett waiver but that application requirements were streamlined. Moreover, a new unit dedicated to eligibility reviews was created within the Division of Family and Children Services on Jan. 1. The department expects an increase in applications because of the simplified enrollment process, spokeswoman Pamela Keene said in an e-mail.
IN JANUARY, advocates and parents spent weeks making appeals and lobbying at the state Capitol. Many of the parents’ concerns stemmed from changes to the Georgia Pediatric Program, which provides in-home nursing services and medical day care to medically fragile children, said Pat Nobbie, the deputy director of Georgia Council on Developmental Disabilities.
Service rates were changed from a bundled rate, which paid for medically prescribed services and basic needs such as diapers, to two separate rates, one of which didn’t include nursing. A simple statement was issued but parents felt ill-informed.
“Kids not requiring actual nursing were the ones denied,” Nobbie said. “New parents surprised by the birth of a child that’s not completely healthy and thriving were being sent home to figure it out on their own.”
Nobbie said that after the lobbying efforts, the Department of Community Health backed off on its new policy but that she didn’t know any more specifics.
Frustrations with insurance coverage aren’t new to parents who feel they aren’t told the truth about changes or cuts to Medicaid.
“What they tell us all the time is that the federal program is changing their guidelines and they’re trying to align state policies with federal policies,” Nobbie said.
As of January, 841 children were enrolled in the Georgia Pediatric Program and 3,241 in Katie Beckett.
“It really does affect the parent’s ability to work and care for another kid. This is so counterproductive when you’re caring for a young child,” Nobbie said.
Josh Norris, the director of legal advocacy for the Georgia Advocacy Office, said children have been removed from the Georgia Pediatric Program.
When children with special needs are assessed for their level of care, they generally need greater care but some are now receiving less.
“It’s resulted in children who had been deemed eligible now suddenly no longer being eligible although their underlying condition had not changed,” Norris said.
Morrell, a single mother who works full time as a retail manager, said that Medicaid lessens her everyday financial burden but that she is often left battling insurance paperwork or paying other expenses for Mackenzie. Four months after being told her child needs a hearing aid, she’s still waiting for the insurance to clear a necessary doctor’s appointment.
AT PSA HEALTHCARE in Grovetown, five clients receive Medicaid because of the Katie Beckett waiver, including Mackenzie and 14-month-old Jane Stewart.
Jane has an undiagnosed condition that causes brain malformations, skeletal abnormalities and severely reduced muscle tone. She weighs 11 pounds and receives nutrition through a feeding tube.
“Day cares, sitters, normal people don’t feel comfortable with a baby like Jane,” said her mother, Mallory Stewart. “When I drop Jane off every day, the nurses just love on her and I know they have the equipment to handle her.”
At the center, Jane receives physical, occupational and speech therapy. Five days a week, her mother drops her off about 9 a.m. and returns about five hours later knowing her toddler was in good hands.
In addition to fighting for insurance coverage, parents, caregivers and therapists struggle to purchase expensive medical equipment for children with special needs.
Sometimes at PSA Healthcare, therapists juggle therapy schedules between children who share one piece of equipment.
Physical therapist Carol Collica scours yard sales for small items – toys, blankets, bibs – while speech language pathologist Rhonda Lane has provided many special tools with money from her own pocket.