Helping families navigate a diagnostic journey with Special Needs Initiative

Adelyn was a perfectly happy, healthy 18-month-old girl. She was meeting milestones, walking, talking and doing all the things a 1-year-old would do.

“She came into this world, fast and furious, and four weeks early,” said her mother, Erin Merchant. “She had a very well, typical childhood … but then at 18 months, she got very, very sick.”

The decline came rapidly, her parents said. She began falling, she was starting to lose words instead of gain them. She lost her ability to eat.

“So within a matter of a month, she had lost just about all of her abilities,” said her father Spencer Merchant, who works as a senior director at UnitedHealthcare. “At around that 20-month point or so, we started to just jump in with doctors and talk about what we were seeing. And it was really hard to describe.”

Spencer, who helps oversee the Special Needs Initiative, said he saw firsthand the struggle to navigate the health care system through his own family’s journey.

The Merchant family was thrown into a spiral of doctors’ visits, testing, medications and chasing a diagnosis that seemed excruciatingly far away. All at the height of the COVID-19 pandemic.

“You get to this point of like, I hope that’s it, because you just want an answer,” Spencer said. “Put a name on it, put a label on it and then we can just start doing something about it. But it’s hard. We spun and swirled and second guessed and triple guessed. And never really got an answer for a while.”

As her parents desperately sought an answer, Adelyn’s health was declining.

“It was heartbreaking,” Erin said. “I have never sobbed more in my entire life than those few weeks. I was just grasping at everything. And by the way, I found out I was pregnant with our second the day that we brought her into the ER for the first time. So it was just a whirlwind of emotions.”

After weeks in the hospital and still no closer to a diagnosis, Spencer recalls getting a phone call from a nurse with the UnitedHealthcare Special Needs Initiative (SNI) — a program that gives families of children with special needs a personal advisor to help them navigate the health system.

The program works to knock down barriers for these families, including through a diagnostic journey. An algorithm can pull data by flagging when a family is seeing a lot of specialists and connect them to a care team who can help discover what might be happening.

Through this process, also called Diagnostic Odyssey, the care team helps connect families to specialized medical centers, health care experts and others in order to facilitate a timely diagnosis and treatment plan.

“To have a nurse call my family about this Diagnostic Odyssey concept that my daughter is struggling to get an answer, meanwhile I can’t get that kind of dialogue from the doctor sitting right in front of me, like that was pretty powerful,” he said. “You hear from a nurse from your insurance company about a connection they can make to help get an answer for your child, it was the right time for our family to hear something like that from somebody we didn’t expect.”

The Diagnostic Odyssey team offered a holistic approach to help find an answer faster.

“They’re looking at all the pieces of the puzzle and you don’t have to bounce around anymore,” Spencer said. “They’re all in it together, they do rounds together, they consult together and they included our family in the process.”

Adelyn was quickly transferred to Mayo Clinic, where the Diagnostic Odyssey team got up to speed on Adelyn’s story and within a week, determined what was happening. Adelyn was diagnosed with NMDA, anti-receptor encephalitis — a rare autoimmune disease that attacks the brain.

“We actually cried for the first time, tears of joy, when they told us what she had because it was treatable,” Erin said. “It’s a disease that 80% make a recovery. Those few moments, we had a lot of hope for what could come.”

Since her diagnosis, SNI has helped the Merchant family with a treatment plan for Adelyn, connected them to a personal family advisor to help with day-to-day needs, transportation, support groups and according to Spencer, is “just an amazing extension of our family.”

“We just kept meeting more of this team that was fighting for Adelyn, advocating for Adelyn, knocking down barriers,” he said. “It’s a scary thought to think about what our life would’ve been like without the Special Needs Initiative.

“Knowing the immense weight that we have and the time and the brain space and capacity it takes, it would just tip our family over. We would not be able to do the things we need for Adelyn, for our other children, and for our own sanity and well-being.”

Adelyn is now 4 years old and although she still does not have control of her body, is fed through a gastrostomy tube and requires 24/7 care, her family does everything they can to make her smile. She loves playing with her dog and has big belly laughs when she gets to play in the pool. And she still has the wraparound support from her SNI team.

“I would say having a special needs child is by far the hardest thing I’ve ever done — it’s the hardest thing I will ever do,” Erin said. “Having the multiple programs that are offered through insurance, through UnitedHealthcare, has been integral to the success of us parenting a special needs kid.

“Just knowing her life is hard. Our lives are hard. And knowing you have a team of people behind you, rooting for you, is really, really helpful. It feels really good to have that support.”

For more information about the Special Needs Initiative, see the latest research.