Dana Smith-Russell is an expert at linking people with the services they need when living with a disability. As a medical case manager for people injured catastrophically on the job, Russell is part advocate, part contractor, and — according to those she cares for — part guardian angel.

Russell goes along on doctor’s visits. She coordinates with insurance companies to make sure vital care is covered. She locates and adapts vehicles so people can get around and modifies homes to accommodate new needs and capabilities.

And yet, when her own son contracted a rare condition that threatened his life, Russell — with her education, experience, and connections — felt powerless to help him find the treatment he needed.

“I have two master’s degrees. I am used to dealing directly with insurance companies. I had doctors backing me. And yet, I struggled to find resources to save my son’s life,” she said. “I’m not talking about having a hard time finding basic services. I’m talking about saving my son’s life.

In 2018, Connell Russell, who is autistic and nonverbal, contracted a case of strep throat. As the infection cleared, he suddenly developed a new symptom. The 13-year-old boy simply stopped eating. No amount of persuasion worked. Every bite became a battle.

Connell received a diagnosis of pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS), a condition that can result in any number of complications, including extreme irritability, obsessive-compulsive behaviors, hallucinations, tics, panic attacks, and even catatonic, trance-like states. In Connell’s case, PANDAS completely shut down his ability to eat.

Dana and Kim Russell began a long and, at times, terrifying hunt for treatment.

“Our son had a diagnosis that was very new to the medical field,” Russell said, “so it sometimes felt as though I was battling the whole medical system, because I couldn’t find doctors to treat him.”

It wasn’t the first time they had fought on his behalf. When Connell first entered school in their rural Georgia district, his school was not fully equipped to meet his special needs. Connell’s doctors supplied detailed reports about his condition and needs. Russell studied the laws that govern special education. And eventually, the school system rose to the challenge.

“Now there are lots of services available to special needs students in our district, including a huge new sensory room,” Russell says, “but we had to work very closely with the school system to accomplish it. The district had the money but needed time and encouragement to create resources for students like Connell.”

Takeaway: Engage educators

When you’re looking for in-school services, educate yourself about what schools must provide under the Individuals with Disabilities Education Act. If your child has an IEP or a 504 plan, make sure you understand and agree with the interventions they describe. If you feel your child would benefit from a different approach, ask for it specifically.

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Finding healthcare services in their small town was equally difficult. When Connell was young, there were no pediatric physical therapy, speech therapy, or occupational therapy services outside of school. The family traveled to Atlanta, the nearest major city, to get the services he needed.

And because autism was then considered a preexisting condition, they paid out of pocket for most of those services.

“It was my job to work with insurance companies, and I could not get insurance for my son because of his autism diagnosis. We were turned down by nine different insurance companies,” Russell recollects. “I was willing to pay whatever it took — but this was before protections for preexisting conditions.”

Then, when Connell went in for an $8,000 dental surgery, a surgical center professional asked whether they had considered applying for children’s disability benefits through the Social Security Administration (SSA). Russell knew about the benefits but assumed she wouldn’t qualify for the income-based program.

She got in touch with a member of the Georgia Governor’s Council on Disabilities, who advised her to travel to the SSA office, in person and with the whole family in tow, to apply. Within 29 days, Connell was receiving benefits.

Takeaway: Apply for social security benefits for your child

Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) benefits for children vary from state to state because some states contribute extra funds to the payments. In many states, children who are eligible for SSI or SSDI benefits are automatically eligible for Medicaid. This official guide will help you understand how benefits work in 2021.

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As weeks bled into months and treatment after treatment failed, Connell visibly shrank. At one point, he was hospitalized for nine days after pulling out his feeding tubes. There were mornings when his room was so quiet his parents were afraid of what they would find when they opened the door.

Trying to mute her emotions, Russell decided to view Connell as she would one of her clients. Finding help became her second full-time job. She got involved with a national PANDAS organization. She worked with the National Institutes of Mental Health (NIMH) in Washington, DC.

Eventually, broadening the net brought results.

Because Connell’s situation was so extreme, it caught the attention of experts in medical research. Many kids with PANDAS refuse certain foods or experience short-term refusal, but Connell’s refusal was complete. Researchers advised her to stop the protocols that were not working and try a treatment called intravenous immunoglobulin (IVIG), which had helped reduce symptoms in some children with PANDAS in a 2016 controlled trial.

Takeaway: Expand the parameters of your search

If expertise is not available locally, connect with a community parent resource center, a state disability commission, or a national organization that focuses on your child’s specific disability. Investigate whether a clinical trial at a recognized research facility could help your child. Explore national resource databases like the Center for Parent Information and Resources and the National Organization for Rare Disorders, which list programs that help families find and afford treatment.

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That’s when a major door opened. Dr. Daniel Rossignol, Connell’s autism specialist, agreed to administer IVIG treatment at a facility in Melbourne, Florida. But a significant hurdle remained: cost.

IVIG to treat PANDAS was not approved by insurance companies in the United States (or by Canada’s publicly funded healthcare system — Kim Russell is Canadian). The medication alone, not counting travel or equipment, averages $7,000 to $10,000.

The family was preparing to mortgage their home when a close friend reached out through social media, offering to set up a GoFundMe to cover Connell’s medical expenses. With the funds from that campaign, the family traveled to Florida and Connell’s treatment began.

After 360 days of total food refusal, he weighed 62 pounds.

Takeaway: Explore nontraditional sources of funding

Government programs aren’t the only resource for parents who need help paying for healthcare and services for the needs of their children. Other sources that may be able to help include:

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Connell’s recovery was uncertain, and the treatment process was difficult. Back home, feeding and giving medication were still a struggle five times a day. Though doctors had initially expressed skepticism about the family’s ability to carry out the daily care, Kim managed with the help of their neighbors and Connell’s twin brother.

Six months after IVIG, Connell walked down the stairs one morning, opened the refrigerator, and unwrapped a leftover burrito. He began to pick at it. Tiny nibbles. His family watched in stunned silence. By the end of the day, he’d eaten it all.

There have been setbacks since that morning — a viral infection prompted a relapse and another round of IVIG, and the COVID pandemic meant a year of anxious isolation — but Connell is mending.

In the end, Connell’s life was saved, not by a single superhero, but by a miraculous patchwork. Government assistance, brilliant doctors and researchers, advocates in state and national organizations, generous friends and neighbors, and behind everything, the fierce persistence of his mothers.

“For 18 months, all of our energy went into keeping Connell alive and getting him the resources he needed,” Russell said. “We navigated through a lot of grief. But we had support from friends I hadn’t seen in years, and reconnecting with those people gave me strength.”

Takeaway: Share your journey

Finding help for your child can be a lonely business. Documenting your experiences, connecting with support groups, accepting help from others, and getting respite for yourself are all important to your long-term success and well-being. As isolating as it can feel to parent a child with a developmental disability, you are not alone.

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