Doctors, therapists, nurses, and more.
Emerson Sieling sees them frequently. Her family qualifies for attendant care as well — all to help her thrive.
The Frisco 10-year-old lives with cerebral palsy, seizure disorder and common variable immune deficiency; she deals with frequent infections, seizures and movement impairment due to early-life brain damage.
Her current team of specialists helps keep her alive.
But with the implementation of STAR Kids, a new managed care insurance program going into effect on Nov. 1, Emerson’s health care team may change. Her mother, Andrea Sieling, is terrified of what the future holds.
“I feel like the lights will be out in November,” Sieling reveals. “If Emerson doesn’t get care, her health will fail much faster and it will happen quickly.”
The mission of the mandatory state program, tailored to provide Medicaid benefits to individuals with disabilities under age 20, is to ensure better care for more people with less red tape, according to Texas Health and Human Services Commission (HSSC) spokesperson Bryan Black, who responded to our inquires via email. STAR Kids (which stands for “State of Texas Access Reform”) will serve children in the Medically Dependent Children’s Program (MDCP) and other state waiver and Medicaid buy-in programs, requiring parents to choose a health plan for their child and funneling most services through the associated managed care organization (MCO). Like the MCOs contracted for other state Medicaid programs, some of the STAR Kids MCOs are affiliated with nonprofit hospitals; others are for-profit commercial businesses.
In developing STAR Kids, the HSSC consulted two groups: the Children’s Policy Council (soon to be renamed the Council for Children and Families) and the STAR Kids Medicaid Managed Care Advisory Committee, made up of providers, advocates, managed care representatives and family members of children with disabilities.
Catherine Carlton, communications director for MHMR Tarrant and mother of three, has witnessed the development of STAR Kids as a member of the ad hoc advisory committee — and as a concerned parent: Her son Scotty, 7, has significant physical and mental disabilities and chronic health conditions.
“I have been able to ask questions, make suggestions and give real-life examples of how what may sound like little things in a contract or a meeting could make a huge impact on my son’s life,” she says.
And though Carlton is thankful her opinions have been heard, the mom still has her concerns about how the new program will affect her son’s care. Like Sieling’s daughter Emerson, Carlton’s son has thrived due to the network of therapists, doctors, specialists, nurses and caregivers she has built through MDCP. “MDCP has given him more years to live and much better quality of life,” Carlton explains. “STAR Kids will be a big change for us. And change is scary.”
LAYERS OF UNCERTAINTY
To navigate the system, STAR Kids families will be assigned a service coordinator through the health plan they pick to help them find providers and coordinate care going forward. Parents will need to choose in-network providers within the MCO’s geographic service area, though Black says health plans can extend contract to providers outside the MCO’s service area if no one in-network offers the care a child needs.
The goal is to provide Medicaid benefits and services “in the same amount, duration and scope as they are in traditional Medicaid,” Black writes. The program doesn’t promise to offer those services via the same health care providers, though MCOs are obligated to try and contract with providers currently caring for patients who qualify for STAR Kids.
But while all families who qualify for STAR Kids are required to enroll, providers don’t have to opt in.
Sieling worries that her daughter’s current providers aren’t aware of the program and may choose to opt out —which would mean Emerson couldn’t continue to see the same providers who are helping her flourish.
“As it stands now, I’ve been calling to see which doctors will be under her care, and most don’t know it is happening,” Sieling says. “I’m the one telling them the STAR Kids program is happening — including calls to Emerson’s neurologist, cardiologist, pulmonologist. It’s extremely scary, because these are the people keeping her alive and they don’t even know about it.”
To give more providers time to sign up, there will be a six-month transitional care period after Nov. 1, explains Black, during which STAR Kids members will be able to continue with their existing providers, even if they’re not in-network. Allowing families to see their current providers will help the state learn which providers are critical enough to merit targeted outreach about the program.
STAR Kids will also give each child a yearly assessment to help his health plan service coordinator make sure the child’s needs and goals are being met. Black emphasizes that the screening is not intended to strip existing services. “The purpose of the tool is not to ‘rescreen’ members and determine if they really need the services they are getting,” he says.
Some parents facing the transition to STAR Kids recognize the benefits of an MCO taking over. “If it’s done right, the program could be able to save money, since MCOs have to manage their money,” says Barbi Beard-Wolfe, Weatherford mom of two and Parents as Partners program coordinator for Cook Children’s. Her 11-year-old son, William, has Down syndrome and a tracheal ring that significantly restricts his windpipe. “They might be able to offer more [money] on contracts with providers to get better ones to come aboard,” she reasons.
And STAR Kids could help parents who aren’t able to build or manage their own team of experts for their medically fragile children. “It’s like going from a PPO to an HMO: You have to get every kind of permission for services,” Beard-Wolfe says. “For parents who have a hard time managing complex health care systems, they’ll get a caseworker.”
But Beard-Wolfe and other parents admit that working with an outside party when they have already been successfully managing their children’s care for years adds another administrative layer with potential uncertainty.
“They are talking about a caseworker who will push stuff through for us, and in theory, it sounds nice,” says Jennifer Jordan of Fort Worth. Her son Wade, 9, has cerebral palsy and involuntary muscle spasms. “But when you have a huge number of kids, I just don’t see how the longevity of it is going to work. I would love for somebody else to be able to call the doctors for me, but it’s like playing phone tag: You want to make sure nothing is getting lost in the transition.”
Beard-Wolfe’s son has seen the same providers since he was born, and the family has built a strong relationship with them. “Over the years, we’ve communicated very well. They respect me as a parent and I respect and trust them as physicians,” she says. If the family has to start all over with a new team of health care providers, it will take time before they can work together as effectively as the current team.
Parents also argue that the annual screening just repeats work that’s already been done. They worry that despite the HHSC’s assurances, expensive, lifesaving therapies and services that have kept their children alive and thriving may be denied. If the MCOs reject any of the existing care, medications, durable medical equipment or other therapy Sieling’s daughter is currently receiving, Sieling says it would be a death sentence for Emerson. “If she doesn’t get care, she will become weak, and ill, and she’ll be termed ‘failure to thrive.’ If that happens, she will not be here.”
Some health care providers have already gotten a taste of what to expect come November. Tina Mootz, a clinical physical therapist for At Home Healthcare, says most of the company’s pediatric patients — who number in the thousands — will be affected by the STAR Kids program. As of now, her company works with MCOs for a small percentage of patients, and the results are disheartening.
“[The MCOs] constantly change what criteria it takes for kids to get those services,” she reveals. “I spent an hour on the phone just last week with one MCO, trying to explain why a kid who can’t jump still needs therapy. The MCO would skirt the issue and say it wasn’t being denied. But the bottom line was, with the kid, if they’ve been on therapy for a year or so, [the MCO believes] they don’t deserve to have any more therapy … With a kid 2 or 3 years old with cerebral palsy, gravity is pulling on the body and affecting muscle tone as the kid moves through space. They develop maladaptive behavior that turns into chronic long-term issues that could have been avoided if the kid was kept on therapy.”
Dr. Andrew Gelfand, president of Pediatric and Pulmonary Sleep Specialists in Dallas, serves children with chronic pulmonary conditions and those who rely on mechanical ventilation. He’s had similar experiences with MCOs. “Some of these companies are denying things first and asking questions later, without knowing anything about the patient,” he says.
Jennifer McGlothlin, a speech-language pathologist at the Callier Center for Communication Disorders at the University of Texas at Dallas, agrees that the intricacies of justifying care for kids with special needs can seem arbitrary and strange. Though the HHSC consulted parents and experts like Catherine Carlton, McGlothlin says legislators and MCOs aren’t therapists and don’t always see the big picture. “These kids who are medically fragile will cost the state more in lifetime therapy if they don’t get intensive early intervention, which is the key to a successful outcome and being a productive member of society,” she explains.
If services are terminate d or denied by the MCO, Black writes that families can file an appeal and their child can continue receiving services while it’s reviewed. Meanwhile, the MCOs have to use “appropriately trained” pediatric providers to review each case. “The expectation is the MCOs will retain staff that have expertise in pediatrics for this function,” Black reports, adding that the HHSC will interview MCO staff to make sure they’re following the state’s requirement.
McGlothlin shares that she and her colleagues have lengthy meetings over specific words and phrases that are most likely to get the OK from MCOs. “They will argue about the strangest parts of the report but not understand the big goal of what we are trying to do with the child,” she says. “They will authorize a kid for therapy that isn’t that severe, and they’ll deny therapy for a kid with really severe problems. It’s really unpredictable.”
KNOWLEDGE IS POWER
To assuage parents’ fears about STAR Kids, the Texas HHSC is presenting information sessions for families and providers through September. (See sidebar for upcoming local sessions.) But some parents who have attended earlier sessions say they still have questions.
“Our kids have significant challenges, and we have specialists we see who we’ve searched out,” says Jordan, who wasn’t reassured when she attended a session in February. “Now we have a for-profit program telling us what to do with our kids. I’m not sure that’s going to play out well, particularly as they haven’t worked with this population before.” Jordan brought up this point at the meeting she attended. “[The HHSC representatives] told us, ‘We need you to guide us and tell us what we need to do,’” she reports.
Others echo the lack of detail presented in the information sessions. “When we asked questions, the representatives from Texas Health and Human Services and the managed care organizations didn’t have specific answers,” recounts Hannah Corbin Mehta, a Flower Mound mom. Her 8-year-old son Aiden has an unusual mix of medical issues that contribute to eating and breathing troubles, as well as gastrointestinal issues and a growth in his left lung. “They failed to provide answers on the things my son needs,” she says. “He is on a specialized respiration breathing instrument that costs $10,000 a month that is not covered by our primary insurance. We need to seek out those waiver programs. Without that, we literally would not be able to maintain Aiden’s care and keep him at home.”
When we reached out to the HHSC with our own questions about STAR Kids, we were first sent a pre-written, one-page information sheet before receiving further answers via email. State Sen. Jane Nelson, who sponsored the bill that led to the creation of STAR Kids, was not available for a phone interview but released a short statement affirming that “all medically necessary services are continuing.”
The HHSC has placed the impetus on parents to educate themselves and pass information to their doctors and therapists. Black emphasizes that the STAR Kids website has resources for families and providers alike, and that parents can email with questions.
His advice? Black reminds parents that knowledge is power. Learn as much as you can now, before the Nov. 1 start date: It’s the best way to understand how the STAR Kids program might affect your child’s health care needs. Open all mail that comes from the HHSC. Talk to your providers about whether they will enroll or have already enrolled in STAR Kids. Ask the MCOs in your area to reach out to your providers about enrolling. Get a full copy of your child’s medical records from your current providers in case you need to change.
Before the STAR Kids program begins in November as well as after its inception, keep a notebook with you and take detailed notes whenever you talk to your providers’ offices, during calls to MCOs, and during any other conversations related to the STAR Kids program or the transition so your notes are all in the same place, Beard-Wolfe recommends. “That way, you can go back and say, ‘They told me this on this day, and this is who I spoke to.’”
Mootz urges parents to be proactive — while there are many patients in each provider’s caseload, “the squeaky wheel gets the grease,” she says. She also admits that some parents may not have the time to spend on the phone with questions and follow-up emails, but says it’s crucial to be aware of what is going on with their child’s care. “Parents who have the time and skillset needed to advocate for their child will get the best care for this day and age,” Mootz explains. “Parents who don’t, sadly, will not.”
Sign-up for STAR Kids began in August, and enrollment is open until October 12. If you do not pick an MCO, the STAR Kids program will choose one for you by the Nov. 1 rollout. If your providers are still not affiliated with the program by then, or if you feel that concerns about your child’s care aren’t being addressed, reach out to your state representative.
“Talk to your legislators and be prepared to advocate,” Jordan says. “I wrote to my legislator, contacted my representatives, and I get on my computer to tweet.” The more legislators hear from their constituents, the more likely they will be to advocate for changes, such as separating certain waiver programs from STAR Kids.
“We cannot stop fighting,” Sieling asserts, adding that parents should write letters to both state and federal representatives. “We cannot just pull the rug out from underneath these children. As parents, you can’t think everyone else is going to do it.”
But no matter how uncertain the process, Beard-Wolfe reminds other parents to be as patient and nice as possible when fighting for their children, because everyone is working toward the same goal: better care for these kids. “Be pleasant to the people on the other side, even if you are frustrated,” she says. “They are just trying to help.”