Special needs children often require out-of-network care from specialists, which means more out-of-pocket costs and extra stress for families, a new study finds.
"In the U.S., the reality is that the more health care needs you have, especially from specialists, the greater chance you will find your needs won't be met, even if you have private insurance coverage," said lead author Wendy Xu, an associate professor of health services management and policy at Ohio State University.
"Inadequate provider networks can really constrain their access to care and it's an ongoing struggle," she said in a university news release. "These are conditions that will never go away and are pretty severe, and these patients very often face additional care needs because of mental health conditions."
For the study, Xu and her colleagues analyzed a national medical claims database that included nearly 8.7 million children up to age 18. About 7% had complex, chronic conditions such as cystic fibrosis and type 1 diabetes.
The researchers found that 24% of children with complex, chronic conditions received out-of-network care, compared to 14% of those with chronic conditions that were not complex and 7% of those without chronic health problems.
Out-of-network costs averaged $930 a year for patients with complex, chronic conditions; $634 for those with noncomplex chronic conditions, and $332 for those without chronic health conditions, according to the findings. The study was recently published in the journal Medical Care.
"Only a small fraction of kids tend to rely on specialty care providers, but that doesn't mean they should be forgotten," Xu said. "For children with complex chronic conditions and for their families, this can present significant hardship."
She noted that the study did not account for cases where families didn't seek needed care because it was too costly or inconvenient.
Xu pointed out that many children with complex conditions require care from therapists and psychologists for behavioral conditions associated with their conditions, and that's when in-network access to care gets even more challenging.
"One of the saddest findings was that among those with behavioral health needs, their rates of having to see a provider out of network were surprisingly high, and that was true even for those kids who didn't have complex, chronic conditions," Xu said.
Rates were over 14% overall, but more than 19% for children with complex medical needs.
"This leads to excessive burdens to families, especially those with children who have complex conditions," Xu said. "Navigating different providers and the scheduling system and multiple specialties is hard enough, and when they have behavioral health care needs, there's another level of work."
COVID-19 has increased the challenges of getting behavioral health care, she added.
"There's been a huge increase in the behavioral health needs as a result of interrupted school schedules, sickness and all kinds of other issues -- making this issue even more concerning," Xu said.
There's more on benefits for children with special needs at the U.S. Social Security Administration.
SOURCE: Ohio State University, news release, March 21, 2022