Margaretta Zuniga tries to keep upbeat about her role as a full-time single mother to two daughters who can’t walk, talk or use the restroom by themselves.
Espy, 3, and Malana, 4, suffer from DiGeorge syndrome, a genetic disorder that has delayed their development.
“When people ask me what’s wrong with them, ‘why are they sick?’ I say, ‘They’re not sick, they’re healthy. They’re just delayed,’ ” Zuniga said. “I want to, just want them to grow up and get an education. … I don’t want them dependent on a wheelchair all their life. I want them to be little girls and be able to run around.”
But their path to development depends on a regimen of frequent physical, occupational and speech therapy, a path that may be endangered by a cost-cutting Texas Legislature.
The state of Texas late last year cut reimbursement rates to therapists through the Texas Medicaid Acute Care Therapy program, and advocates for the disabled say access to care has suffered.
The cuts, tied up in court for more than a year, were the result of a 2015 decision by the Texas Legislature to slash the therapy program by $350 million over two years.
House leaders tried to restore the funding in this spring’s legislative session but only succeeded in a 25 percent restoration. Now a bill co-authored by a Waco Republican is giving advocates and parents a glimmer of hope.
The House of Representatives on Aug. 4 unanimously passed House Bill 25, which would restore an additional $160 million of state and federal Medicaid in 2018 and 2019 to the therapy program. Rep. Sarah Davis, R-West University Place, filed the bill in the special legislative session with the help of Rep. Charles “Doc” Anderson, R-Waco.
The bill isn’t part of Gov. Greg Abbott’s agenda for the special session, and it faces an uncertain future in the Texas Senate before the session ends Wednesday. But Anderson said Friday he’s hopeful for a solution.
“This is something we absolutely need to do,” he said. “I think the Senate’s in the same mindset. … Some providers have terminated their contracts. It was something that’s really a priority, even a crisis, in my mind.”
The controversial cuts were the result of an end-of-session directive in 2015 called “Rider 50” that sought to rein in Medicaid spending. Defenders of the cuts have said Texas overpays therapy providers compared to other states, though that claim continues to be debated.
The Texas Health and Human Services Commission began in December to reduce reimbursements for providers by 25 to 30 percent, and a new set of reimbursement rules starts Sept. 1, reflecting the Legislature’s most recent partial funding restoration.
Local therapy providers say the cuts have already caused them to tighten their belts and reduce services.
That includes the Early Childhood Intervention program the nonprofit MHMR offers at the Klaras Center. The center uses a combination of Medicaid and general state revenue to do weekly therapy with disabled children and therapy training with their caregivers.
The reimbursement cut will cost the program about $70,000 a year, resulting in cutbacks of caseloads and staff training, said Pamela Marcum, director of the Early Childhood Intervention program.
“With those cuts, it’s going to be a challenge to be able to meet our budget,” Marcum said. “In the past, the local MHMR board has been supportive when we’re not able to meet our budget and allowed us to use the reserves of the center.”
But Marcum said that kind of stopgap spending isn’t sustainable. And without adequate therapy, children’s medical issues can become even more expensive, she said.
“That’s what we’re trying to get across to the Legislature,” she said. “The continuing underfunding of Early Childhood Interventions is putting the whole system at risk.”
Zuniga has already experienced what happens when her children are denied therapy services.
She takes Espy and Malana twice a week to Elite Therapy Center in Waco, where therapists lead them through exercises to strengthen their muscles and coordination.
“It’s been very helpful,” she said. “They’ve made a lot of improvements.”
But this spring, she said Blue Cross/Blue Shield, the third-party managed care provider for the Medicaid benefits, notified her that Espy’s condition did not qualify for reimbursement. Zuniga fought the termination and ultimately switched providers.
“I said, ‘What do you mean? She’s in a wheelchair and she can’t use the bathroom,” Zuniga recalls telling the insurance provider. “Neither one of them can talk.”
In the meantime, Espy went a month-and-a-half without occupational therapy and her development suffered as a result, Zuniga said.
Kari McKown, co-owner of Elite Therapy Center, blamed the gap in care on the Texas Legislature’s 2015 funding cut, saying it has caused managed care providers to cut back on what they will cover.
“Not only have the rates been cut, but kids are not getting authorized for the time they need,” McKown said. “We have a lot whose doctors say they need twice-a-week therapy, but they’re only getting approved for once a week.”
She said most of her patients get help from Medicaid, and most have been affected by the reimbursement cut.
“It’s a really sad time for our kids,” she said. “I don’t feel anyone is looking at what’s in the best interest of kids. When kids don’t get the services they need, it causes long-term problems that are more expensive.”
McKown said her business has lost about 30 percent of its monthly revenue since December. She said the practice will survive, but it has already started cutting back on equipment, home visits and client time. On paper, she hasn’t lost many patients, but some of those patients are not coming in because they’re not adequately covered by Medicaid.
“It’s a scary time for businesses who are trying to make sure they can meet the bottom line with these aggressive rate cuts while providing these services to kids in Central Texas,” McKown said.
State Health and Human Services Commission spokeswoman Carrie Williams said Texas did lose some Medicaid-enrolled therapy providers early this year, but most were due to other factors.
Williams said the agency identified three providers that opted out of the Medicaid program because of the reimbursement rates, affecting a total of 60 clients.
“We want families to contact us and raise flags if they’re having issues,” she said. “We know these services are critical and we want to resolve any issues as quickly as possible.”
McKown said most people don’t understand how critical Medicaid is for many working families with disabled children.
“The cost is astronomical,” she said. “If they don’t have Medicaid, there’s no way they can afford it.”
Ashley Ballew, whose disabled son gets therapy at Elite, lived through the experience earlier this year of being cut off from Medicaid services.
McKown said Ballew, also a single mother, was temporarily disqualified from Medicaid because she made $19 too much one month after working a short-term job.
Ballew’s son, Benjamin, 15, uses a wheelchair and is not able to walk or sit up without assistance or eat without a feeding tube. During the time she was off Medicaid, his condition worsened, Ballew said.
“He was not able to go for about two months,” she said. “In that time he was not able to get therapy for his legs and arms, and they became even more spastic and tight. His legs started scissoring, crossed at the ankles, and became harder to bend. At night he couldn’t sleep. He would complain of his legs hurting.
“He was constantly wanting to turn me over this way or that way or straighten his legs out. Both of us at night are constantly up. Nobody wants to see their child in pain and not be able to do anything but turn them over. Being able to stretch and move has an effect on every activity he does.”
Ballew said Benjamin has private insurance through his father, but without secondary coverage from Medicaid, she couldn’t afford the remainder.
“There’s no way I can pay the 20 percent of his medical expenses, because they’re so outrageous — his medication, his incontinent supplies, doctor’s appointments and therapies two times a week,” she said.
Ballew, a special education assistant at Midway Independent School District, said she devotes all her energy to taking care of Benjamin.
“It’s not like I’m sitting around doing nothing and wanting Medicaid to pay for everything,” she said. “I have a full-time job, but I just need that extra help. … It shouldn’t be this hard. All I want to do is take care of my son.”