The state’s new managed care system for young disabled Medicaid recipients is causing unnecessary delays in care for the state’s most medically fragile kids, said parents and advocates for those children.

Tammy Baldera’s 10-year-old daughter Chloe is one of about 6,000 severely disabled children in the state’s Medically Dependent Children’s Program, which provides nursing care at home. On Nov. 1, participants in the program were required to start using a new managed care system known as STAR Kids.

Baldera said the new system requires prior consultations and referrals that are dangerously disrupting her daughter’s medical care.

“I didn’t have to worry about anything,” Baldera said of the previous system. “But now all these kids are in jeopardy. I shouldn’t have to fight for (her care).”

STAR Kids provides services to about 180,000 young disabled Medicaid recipients. Under STAR Kids, parents must choose a managed care organization, known as an MCO, and a primary care physician, who must be consulted for all services and referrals to specialists.

The problem, Baldera said, is that severely disabled kids like Chloe routinely deal with a variety of specialists and regularly need special equipment and supplies, not just occasionally. These kids can’t wait for appointments and approvals for services and items that aren’t one-time buys, advocates say.

“When disruptions to access to care happen or when their medical team is dismantled, it’s a life-or-death situation for them,” said Hannah Mehta, director of Protect TX Fragile Kids, a nonprofit that advocates for fragile children.

Carrie Williams, spokeswoman for the Texas Health and Human Services Commission, said STAR Kids, which was in a bill sponsored by Sen. Jane Nelson, R-Flower Mound, is tailored for clients to receive comprehensive, coordinated and high-quality care and to reduce the administrative complexity of delivering Medicaid benefits.

Mehta said managed care may be effective for the population of disabled children under the STAR Kids umbrella who need primary care, but she said medically fragile kids cannot fit under this model because they need secondary and tertiary care from birth.

“We’re asking Sen. Nelson to recognize its impact and put in place some safeguards and protections in order for the impact to be mitigated,” Mehta said.

There are only two MCOs in Bexar County: Community First and Superior HealthPlan.

Baldera said she is constantly on the phone with her new insurer, Community First, to get authorization for coverage of Chloe’s life-saving medicine and other services.

The family’s pharmacy denied Chloe’s blood pressure medication, which helps her heart pump efficiently and hold off surgery, because Community First would not cover it. It took several calls to finally get it approved, Baldera said, but even then her usual pharmacy couldn’t fill it. She now drives 40 minutes to pick it up at a compounding pharmacy on the other side of town because the health plan only approves certain medications at certain pharmacies.

Also, Baldera said, having to get referrals from Chloe’s primary care physician every time she needs a specialist puts her at unnecessary risk.

“This delays care. She had hip surgery and her bone broke, so we needed an endocrinologist for calcium injections,” Baldera said. “We had to make an appointment with my pediatrician to get a referral for the endocrinologist so we could go. It took nearly a month and a half to get an appointment.”

Six-year-old Colton Wendell has cerebral palsy, epilepsy and lung disease, among other conditions, that make him dependent on a tracheostomy and a ventilator. His mom, Jenifer Wendell, said she now gets five fewer suction catheters from her supply company since they switched to Community First.

The catheters are used to get fluid out of Colton’s lungs. These tubes can’t be reused, Wendell said, because to go down Colton’s throat, she needs to use sterile equipment. Otherwise, he is at risk of catching pneumonia. The number of catheters needed per week varies based on the child’s condition.

“They said (the number of catheters weren’t) medically necessary,” Wendell said. “But tubes can get clogged depending on how sick he is, and that alone is a big risk for hospitalization. It’s not a matter of being fraudulent or trying to take advantage of the system. It’s a matter of kids who are fragile.”

Another problem with STAR Kids is that the physicians whom families have been seeing for years are suddenly not covered by the MCOs.

Williams said STAR Kids includes protections designed “to help maintain existing provider-patient relationships” by allowing continuity of care inside and outside the service area for one year. For a majority of MCOs, continuity of care for physical, occupational or speech therapy and nursing care is honored for six months or until the health plan conducts new assessments.

But that’s not enough for some of the children.

Lynn Tu, whose daughter Jaelin was diagnosed with chronic lung disease from a spinal cord injury in 2010, moved from San Antonio to Austin prior to the switch. Under Blue Cross and Blue Shield of Texas, which is Tu’s managed care organization in Travis County, her daughter is at risk of losing her entire medical team in San Antonio when the continuity of care period ends.

Tu said the MCO hinders Jaelin’s access to care because it limits her to Travis County providers. Before STAR Kids, severely disabled Medicaid recipients were under preferred provider organization insurance, so parents had the freedom to choose the doctors and hospitals of their preference under a fee-for-service model.

“My physicians who I trust have taken my daughter from only able to move her finger to eating by mouth. And now we’re getting ready to stand and walk. We want to continue that five-year process, but I won’t continue seeing her physicians,” Tu said.

Colton lost his audiologist with the switch to STAR Kids because the doctor did not contract with Community First. Now all expenses will have to be paid out of pocket, Wendell said, because there are no other pediatric audiologists who do hearing aids and molds in San Antonio under the MCOs.

State Sen. Carlos Uresti, D-San Antonio, who sits on the Senate Finance Committee, said the panel has taken steps to increase state oversight of MCOs. The Senate’s version of the state budget includes a requirement that the Health and Human Services Commission conduct internal monitoring and audits of MCOs’ expenditures and pursue strategies to strengthen the agency’s procurement process and administrative efficiency.

The House version of the budget would direct the commission to develop procedures in its contracts with MCOs that address the medically fragile kids’ special needs and to allow the patients to easily move between service areas.

The final budget has yet to be ironed out.

Parents also fear cuts to the 24-hour nursing care that kids receive under the Medicaid waiver that may be coming when continuity of care ends. Briar McCann, a 14-year-old who has scoliosis, dislocated hips, chronic lung disease and cerebral palsy, had his nursing care cut by 28 hours per week because Superior HealthPlan said it wasn’t medically necessary.

His mother, Gabriella McCann, said Briar’s nursing agency, Texas Kids Home Therapy, sent about 700 pages of documentation to Superior HealthPlan to get authorization for nursing care but that the MCO didn’t see the part where her son needs constant suction because of his tracheostomy to keep his airway unclogged.

“We tried calling them and explaining to them that he did get suction, but they were not seeing the paperwork,” McCann said. “They were already discussing in the letter how they’d be reducing little by little until they got to cut 120 hours.”

McCann filed an appeal to the MCO, which was denied. She then appealed to the state commission and sought a hearing while contacting Disability Rights Texas, which provides legal resources for disabled people. At the hearing, the reduction in hours was finally withdrawn.

“Let’s say I don’t have those 28 hours. Let’s say I fall asleep when I’m supposed to be watching him and he gets a mucus plug. I’m not a doctor, I’m not a nurse,” McCann said. “He only has one airway, that’s it. He can die on me, and I’ll feel guilty for the rest of my life.”

This article was published in the San Antonio Express-News April 18, 2017.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s