Editor’s Note: This story by Nora Doyle-Burr first appeared in the Valley News on March 22.
WHITE RIVER JUNCTION — A state-run mobile clinic that evaluated children for developmental disabilities such as autism is closing, and the Vermont Department of Health is now directing families whose children need such evaluations to the University of Vermont Medical Center in Burlington.
While some families can get these evaluations — which can take two hours — at Dartmouth-Hitchcock Medical Center in Lebanon, both academic medical centers have waits of as much as a year.
In the meantime, families and those trying to support them while they await a diagnosis are left to manage children’s behaviors without a complete understanding of what might be causing them.
“I do not have a lot to say beyond how desperate we are for care of our neurodiverse pediatric patients,” Dr. Rebecca Yukica said of the clinic’s closing, which the state’s maternal and child health director announced in a March 21 letter to community partners. “There is a tremendous need. This is an area of great hardship.”
Yukica owns Upper Valley Pediatrics, which has offices in East Thetford and Bradford.
The Child Development Clinic at Children with Special Health Needs and the Vermont Department of Health has operated for more than 60 years, providing evaluations for children with neurodevelopmental delays through a network of community-based, regional clinics, in collaboration with local and statewide service providers. In addition to autism, the clinic evaluated children for cerebral palsy, intellectual disabilities, genetic disorders, learning disabilities and ADHD. At its height, the clinic was evaluating as many as 400 children annually, according to Ilisa Stalberg, maternal and child health director at the Vermont Department of Health. Amid the pandemic, the clinic had stopped doing evaluations.
The clinic was once staffed by a state-contracted pediatrician who traveled throughout Vermont offering pop-up services, Stalberg said. Now that the state-contracted pediatrician has retired and UVM Medical Center has recruited a pediatrician who specializes in child development and behavior, the state is shifting to this Burlington-based model.
“It’s been a long time coming,” Stalberg said.
She acknowledged that the shift “will leave a gap for families” in the number of available spots and in the convenience of their location for those who live a distance from Burlington with varying access to transportation. She said the state is working to sort out whether there is a way to offer a mid-level evaluation for children with less complex conditions through community-based providers.
News of the clinic closing left some concerned that the change will reduce access to already scarce resources for families. It comes at a time when parent-child centers such as The Family Place in Norwich are struggling to meet high demand for support for families as many have been isolated for two years. Some continue to be isolated as Covid-19 vaccines for children younger than 5 are not yet available and child care spots remain hard to come by.
Kelly French, a nurse who serves as The Family Place’s Children’s Integrated Services Early Intervention Program supervisor, said the announcement of the clinic’s closing comes as early intervention programs — which serve children ages birth to 3 — across the state are seeing high caseloads, which has driven up referrals for developmental evaluations.
“I can’t remember when we’ve had a quiet period,” French said.
While French and others in early intervention can help families without a formal diagnosis, they might seek one when their efforts are not helping a child make progress, she said.
Julia Dickenson, Children’s Integrated Services program assistant at The Family Place, said the diagnoses that children receive through evaluations can “open a lot of doors for them,” such as enabling insurance coverage for therapy.
Dickenson, who said the announcement of the clinic’s closing came as a surprise, said six months or a year is a long time in a young child’s life.
“To make it even more difficult for families is just disheartening,” she said of the state clinic’s closing.
Dr. Christina DiNicola, a pediatrician at Gifford Medical Center in Randolph, echoed Yukica at Upper Valley Pediatrics in the desire for more support for families. In a Friday interview, DiNicola said a mom, who brought in a child just that morning, said, “I’m at my wit’s end.”
Seeing struggling parents in her practice is a daily occurrence, DiNicola said. She said parents are sometimes managing a difficult child, have limited parental skills or some combination of both.
DiNicola said she is concerned that the closing of the Child Development Clinic will further delay appointments for families. She said she has already seen children sit on waiting lists at UVM for as long as a year.
The wait time at DHMC is slightly less, ranging from six months to a year, she said. There also are some private centers that can help, but not all of them take Medicaid, she said.
“I’m really sad, disappointed,” DiNicola said of the state clinic’s closing.
Some people said they are not seeing the yearlong waits that others have described.
“Our experience has been that we have been able to get families in for evaluations in support with a fairly quick turnaround, often less than a month,” Laura Perez, executive director of the White River Junction-based Special Needs Support Center, said of child development services at the Children’s Hospital at Dartmouth.
Dr. Nina Sand-Loud, Dartmouth-Hitchcock Medical Center’s lone developmental and behavioral pediatrician, said Vermont and New Hampshire are not alone in facing a shortage of specialists in her field. It’s a nationwide shortage that predates the pandemic.
Sand-Loud and the nurse practitioner who works with her try to prioritize younger children — sometimes getting them in within three months — because children older than 5 can access support through their schools and because earlier interventions can make the most difference, she said.
Demand and the complexity of the conditions some children are experiencing have increased amid the pandemic, Sand-Loud said.
The pandemic and associated isolation affected children’s social and emotional skills, in some cases contributing to disruptive behaviors and anxiety. Some of the effects of isolation can mimic developmental conditions and make diagnoses more challenging, Sand-Loud said.
“That’s why it does take so long,” she said of the evaluations. It’s “not something you can get in a 15-minute visit.”
In spite of the delays some families can face in accessing evaluations, Sand-Loud said she hopes they won’t feel discouraged from seeking support through community providers such as The Family Place and their family pediatrician.
“The services in the community are good services,” Sand-Loud said. “I don’t want people to feel like ‘Well, I’m not going to bother.’”
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