At 1½ years old, Tommy Juhl developed an unusual cough. At 5, he began to flick his fingers and make sounds unintentionally. It was just the start of what would become a debilitating, lifelong condition. Doctors diagnosed Tommy with Tourette syndrome (TS), a neurological disorder marked by involuntary, repetitive movements and vocalizations.1
As he got older, the tics became more frequent and complex, said his mother, Kirstin Juhl of Phoenix. By junior high school, Tommy was having full body tics, including head-whipping movements that left him with violent headaches and sore muscles and joints. Despite the unique medical, behavioral and pharmaceutical needs for those with TS, the health system had supported the family sufficiently in managing Tommy’s care. As the disorder progressed, though, a higher level of integration and advocacy would be required to meet his needs.
Tommy’s story demonstrates how an integrated health system can work on a family’s behalf, with the member at the core of the experience. In this case, integration brought together Tommy’s neurologist and his family’s insurance advocates to not only help him get care he needed, but also help the Juhl family address other issues that arise for a member with special health care needs — including finding specialty providers and connecting the family to community resources.
While Tommy’s story is an example of the system supporting a rarer, complex need, the same level of integration and advocacy must extend to all members. For some, integration could be as simple as data from an individual health record being consistent from primary care physician, to specialist, and back. And when that foundation of integration and advocacy is present throughout the system, for all members, it makes Tommy’s situation become less of an extreme case and more an example of a best-practice care approach.
The mental toll of a debilitating disorder
For the Juhl family, the challenges with the disorder went beyond medical needs. Tommy got bullied in school — he was at 6 schools in 3 years before enrolling in private education. He couldn’t control his hands to write, use a keyboard or eat or drink.
“When he would try to drink something, the liquid would fly everywhere because his whole body was jerking,” Kirstin said.
The 2 drugs approved for his condition were not effective. His family had tried 10 medications, including painful injections, and budgeted between $100,000–$200,000 for out-of-pocket treatment. His parents also had to miss time at work to manage frequent crises.
Families with special health care needs like the Juhls have a higher demand for help in navigating their care journey. In fact, 1 in 5 children has special health care needs that pose complex challenges.2 These children have twice as many service interactions and 13 times as many claims as children without special health care needs.3 They often have 9-month waits to see a specialist, who they engage 5 times more often than a family without special health care needs.4 Their out-of-pocket costs and hospital admissions are far higher, too.5 Finally, a family member with special health care needs can put a strain on the family as a whole — including financial, psychological and emotional stress.
For Tommy, besides the neurological exams and the drugs, there was the physical, emotional and mental toll of his body and verbal tics. He became angry and depressed, and as his mood spiraled down the tics came on stronger and more often. He was diagnosed with a co-existing mood disorder that exacerbated his tics. With guidance from his pediatric neurologist, Tommy was sent to a mental health therapist. But therapy didn’t help much either. Tommy became increasingly desperate. Something had to be done.
In the spring of 2018, Tommy’s pediatric neurologist said that his condition might improve through deep brain stimulation (DBS) therapy, which would require a procedure to implant an electrode in Tommy’s brain to alter the activity of his brain’s circuits.
“Saying ‘yes’ to elective brain surgery on your teenage son is not something you enter lightly,” Kirstin said. “But we had to do something — Tommy’s latest tics had really crossed a line in his quality of life.”
Since the procedure was experimental, however, the challenge ahead was to make an effective case for getting it approved. And that was far from an easy, straight-forward task.
Special needs advocates help navigate a complex journey
For families with special health care needs, a single point of contact can provide streamlined and compassionate support throughout their journey. That’s why UnitedHealthcare uses data algorithms to help find those at highest risk and route them directly to a special needs team, which helps provide proactive, highly personalized support. This team includes advisors and advocates who are experienced in the unique challenges faced by those with special needs, including finding specialty providers, resolving unique insurance issues, connecting to community special needs resources and providing a care plan to help the child with special health care needs during their transition to adulthood.
Employers may benefit from increased satisfaction with benefits from employees, reduced absenteeism and presenteeism, lower overall health care costs through more efficient navigation of the health care system, and fewer calls to human resources.6 Employees benefit by having a go-to person who can advocate and provide support for the entire family, not just the child with special health care needs. This may help ease the burden of navigating the health care system and reduce stress, just as Kristin and her family experienced.
In May 2018, Kirstin connected with a family advisor named Joy — as it turns out, it was the only call Kirstin had to make throughout the entire journey. Joy, along with others on the special needs team, helped take ownership of a complex situation and integrate services to best support Tommy and his family through a long, challenging and often frustrating journey.
A cross-functional team of experts dove into the case to determine that DBS was indeed the best course of treatment. The team then built the case for moving forward once that treatment was considered the best option. To help build a case for DBS approval, Joy immediately began to research the scientific literature on using deep brain stimulation therapy to treat TS. She and her team were also there to help coordinate community resources, provide information on his rare condition and, most important, help the Juhls build a case for why this experimental treatment was right for Tommy.
“Joy was my therapist, emotional support and status updater,” said Kirstin, who kept in daily contact with Joy over the ensuing weeks and months.
Family advisor support helped the Juhls in getting an experimental treatment approved. One of those who became involved was Dr. Paul Monte, National Medical Director for Complex Conditions at OptumHealth.
“Cases like Tommy’s are complex situations,” Dr. Monte said. “We can help sort through claims, prior authorizations, treatment paths, specialists and help come up with the best care plan.”
Kirstin was confident that the right team was in place around Tommy’s case. As Tommy anxiously awaited approval for the procedure, his mom encouraged him by saying, “there are so many people who care about you and are working very hard on this.”
One day last fall, Kirstin got a call from Dr. Monte. After months of work and unknowns, the procedure was approved.
“I think I cried for 30 minutes,” Kirstin said.
“People didn’t give up,” Dr. Monte said. “We had multiple people fighting for this.”
In October, Tommy had surgery to implant the electrode in his brain. When the deep brain stimulation device was turned on, the effect was subtle yet noticeable —it was as if someone had turned the volume down on Tommy’s tics, Kirstin said. The tic episodes became farther and farther apart.
Meanwhile, the special needs team filed the claim on the Juhls’ behalf and helped everything go as smoothly as possible, Kirstin said. After a mistake by the surgeon’s office in submitting the claim resulted in a $70,000 bill showing up in the mail, Kirstin said “I didn’t even blink an eye. I simply called Joy, and she took care of it for me, just as I knew she would. I didn’t have to make another call or do a single thing.” Information about Tommy was shared with his various providers so she didn’t have to repeat his long medical history every time Tommy saw a new doctor.
Now, 9 months later, Tommy’s motor tics are about 90% reduced, and his mood stability has improved by 50%, his mother says. He performs the basic tasks of life without difficulty. He is back at school, although not without struggles. He participates in family, friend, and school activities. The fine motor skills in his hands have come back to the point he can use a keyboard. He is able to engage with the world and attain the experiences and skills required for a fulfilling, productive life.
In April 2019, Tommy went to Washington, D.C., as a youth ambassador for the Tourette Association of America to advocate for policies to improve lives for people with TS and other tic disorders. With the help of an integrated system and advocates, in this case family special needs advisors, the Juhls were able to successfully navigate a complex health care journey to get support and care for their son.
“It was an amazing experience —they were so caring, so supportive,” Kirstin said. “They are my own personal super heroes.”
Kirstin Juhl has authorized UnitedHealth Group to publish details in this article pertaining to her family’s health care journey.
1 What is Tourette. Tourette Association of America. Accessed June 10, 2019. https://tourette.org/about-tourette/overview/what-is-tourette/
2 Centers for Disease Control and Prevention. Making Sure Children Get the Mental Health Care They Need. Accessed June 10, 2019. Last reviewed June 7, 2017. https://www.cdc.gov/features/child-mental-healthcare/index.html
3 UnitedHealthcare employee book of business, comparing special needs population with non-special needs. Jan-Dec 2016 data, analysis completed 2017.
4 UnitedHealthcare employee book of business, comparing special needs population with non-special needs. Jan-Dec 2016 data, analysis completed 2017.
5 UnitedHealthcare employer book of business, comparing special needs population with non-special needs, Jan.–Dec. ’16 data, analysis completed 2017.
6 UnitedHealthcare, Supporting families of children with special needs, internal collateral 2018