This legislative session Texas Republicans have declared themselves the great defenders of children with disabilities. In March the state Senate passed Senate Bill 25, a bill that would bar parents from suing a doctor who lies during a pregnancy about likely fetal birth defects. Letting parents know the truth would convince many to seek an abortion, supporters of the bill argue, and springing doctors from legal liability for lying to their patients is a necessary move for disability rights.
“The Texas Senate values the life of every child and will fight to protect the value and dignity of every life including those born with disabilities,” said Lt. Gov. Dan Patrick, in response to the bill’s passing the state Senate last month. (The measure is still awaiting a vote in the Texas House.)
“This bill is short and simple, but presents a powerful message of profound respect for unborn life and the lives of persons living with disabilities,” said Jennifer Allmon of the Texas Catholic Conference of Bishops in a press statement.
Other factors may be involved in this peculiar legislation, however. “The proponents of this bill really want to push this narrative that it’s about the protection, somehow, of disabled kids or the medically fragile community,” said Blake Rocap, the legislative counsel for NARAL Pro-Choice Texas, over the phone.
“But they’re not exactly taking positive steps to take care of those folks” after they are actually born, Rocap added, with a note of sarcasm.
For some parents in Texas raising children with severe disabilities, there’s not a lot of evidence for all this valuing and respecting and dignifying the lives of children with real disabilities. Instead, many parents argue that the Republican-dominated legislature has passed laws that weaken health care programs thereby making their lives miserable and putting their medically fragile children in danger.
In 2013, for instance, the Texas legislature passed an earlier law called Senate Bill 7, which moved children with disabilities off traditional Medicaid to managed care organizations, or MCOs, through a program called STAR Kids.
“Instead of the state wrangling bills from thousands of doctors, it cuts a few big checks to the MCOs, which decide how much they will pay doctors and which services they will cover,” said J. David McSwane in a February piece for the Dallas Morning News. “One way for MCOs to turn a profit is to eliminate services they view as unnecessary. But parents say they’re cutting services they desperately need.”
“For the population with high medical needs or complex medical requirements, the premise of managed care does not apply,” argued Hannah Mehta, the director of Protect TX Fragile Kids, told me in a phone conversation. Mehta is one of the parents profiled in the Morning News article.
For children like Mehta’s son, who has had severe health problems since birth, Medicaid is available through a program that waives the income requirements. The program helps cover the high costs of specialty care, equipment and medications so that children can stay at home rather than living in a medical facility. It even helps pay for home health aides. But under the new STAR Kids program, some parents say, services that the state paid for without question are now being delayed or denied by their managed care organization.
Part of the problem, Mehta said, is that moving from one big, statewide program to a bunch of private managed care insurers means that services provided certain medical care providers may no longer be covered. If, for instance, your child receives specialty care from a doctor in San Antonio, but your managed care company is Dallas focused, you might suddenly find yourself cut off from that doctor.
“Families have built these carefully structured teams that help keep their child stable, and they’re about to lose, in some cases, that entire team because of those geographical restrictions,” Mehta said.
In addition, many families blame the managed care organizations’ focus on cost cutting for their children’s losing access to necessary medical supplies. Parents who spoke to McSwane reported prescriptions not getting filled, necessary surgeries being denied and unnecessary delays in obtaining medical care, all because of the extra red tape introduced by these for-profit companies looking for opportunities to cut costs.
“We realize challenges can occur when launching a new program, and we put a strong system in place to handle these challenges,” Texas Health and Human Services said in a statement sent by email after Salon requested comment. “All STAR Kids members are able to continue seeing existing primary care and specialty doctors for one year even if the provider is out of network. This will maintain continuity of care.”
Mehta responded by saying she is grateful that the state agency is trying to help, but said that these efforts are not enough. As another parent I spoke with, Jill Bradshaw, pointed out, her pediatrician had special knowledge and had seen her daughter since birth. Forcing parents to switch doctors, even if the switch is delayed for a year, can be extremely disruptive.
The bill that switched kids from traditional Medicaid to STAR Kids was the brainchild of Sen. Jane Nelson of Flower Mound, Texas, who was also one of the co-sponsors of the newer bill that would make it easier for doctors to conceal a fetal defect diagnosis from expectant parents. Nelson is so opposed to abortion, in fact, that she got a Courageous Defense of Life Award from the Texas Alliance for Life in 2015.
But for parents with living, breathing children in need of medical care, Nelson’s supposed courage in defense of life is sorely lacking.
Mehta, who lives in Flower Mound and is a constituent of Nelson’s, told me she spent a long time trying to get a meeting with the senator about the plans to shift disabled children from traditional Medicaid to the MCO program. After months, Nelson agreed to a short meeting with parents, doctors and even some children.
Mehta says that Nelson was agreeable during the meeting, and the parents “left feeling like we were on the same page.” But when they followed up with Nelson’s staff after the meeting, they were told that her plans for the Medicaid system “had not changed.”
According to the Follow the Money website, which one can access directly from the Texas legislature’s website, Nelson has received more than $1.3 million in contributions from the health care industry, better than one-fifth of her overall fundraising over six election cycles. Nelson’s office did not respond to multiple requests for comment.
But while Nelson is eager to cut costs, even if this disrupts necessary medical services for fragile kids, all concern over saving money seems to dissipates when abortion enters in the picture. As Rocap pointed out to me, the bill barring lawsuits against doctors who lie to patients will only make it harder to pay for the care of children with disabilities.
Suing a doctor who lies about a fetal defect, Rocap explained, “allows [for] the recovery of medical bills and other expenses incurred in helping a child who, had the physician diagnosed correctly or not intentionally withheld information or lied to their patient about the status of their pregnancy, they wouldn’t have incurred those expense, medical or otherwise, because they might have chosen to have an abortion.”
Parents, he said, can sue, but so can insurance companies, including Medicaid. Under the guise of “protecting” children with disabilities, in other words, Texas Republicans are seeking to cut off a source of funding to cover the medical costs for those children.
“Their other actions show it’s just a facade for allowing anti-choice physicians to lie to their patients in hopes of averting an abortion,” Rocap said.
But once that abortion is averted, conservatives’ interest in making sure those kids are well cared for becomes scarce indeed.