New research details how children with disabilities are ignored and devalued by doctors and other health care providers, potentially leading to substandard care.

In interviews, parents of kids with complex medical needs reported that their children were treated differently and provided limited accommodations when seeking medical treatment. Parents recalled situations where they were told that care could not be provided because of a child’s disability, instances where providers talked to them and not their child and circumstances where they were essentially told not to bother with treatment.

The experiences are outlined in a study published this week in the journal Pediatrics that’s based on interviews with 30 family caregivers of children ages 18 months to 18 years with medically complex conditions across 15 states. Most of the children involved in the study required some type of health care more than 20 times per year.

Advertisement - Continue Reading Below

“Our goal was to validate families’ experiences and bring awareness to the issue,” said Dr. Stefanie Ames, a critical care physician at University of Utah Health who led the study. “Recognizing the problem is the first step.”

One caregiver told the researchers that her child was given inadequate pain relievers during a procedure and another said a doctor advised against treating her daughter’s cancer even though the treatment was likely to be successful.

“They didn’t treat her like she was really alive,” one caregiver said. “They absolutely looked at her as if she was a vegetable and completely nonresponsive, which is not the case.”

Another study participant recalled the response she got from a physician about reading to her daughter.

“(The doctor said), ‘Well, you can (read) if it makes you feel better, but she’s not really learning, and she’s not really responding like other kids. She responds like a dog.’ That’s literally what he said. Those were his words, and you think this is the clinic for people with special health care needs.”

Overall, the family caregivers interviewed said that they believed the main reasons for the discrimination their children experienced were rooted in limited knowledge about caring for kids with complex medical needs, a disinterest in providing care to children seen as unworthy and negative assumptions about a child’s disability and quality of life.

In an commentary published in Pediatrics alongside the study, Dr. Stacey Cook, Dr. Sangeeta Mauskar and Dr. Jay G. Berry, who all specialize in caring for children with medical complexity at Boston Children’s Hospital, indicated that there’s good reason to believe that the trends identified in the study are emblematic of what’s happening more broadly.

“We believe that the disheartening findings presented in Ames et al are true and generalizable. Throughout our training and careers across institutions in all US geographic regions, we have repeatedly heard derogatory language used when pediatric providers present and discuss (children with medical complexity),” they wrote, citing the example of a child with medical complexity being called “a trainwreck kid.”

Those behind the study said that the findings point to a need for better training about disabilities for medical providers.

“I believe that all health care providers choose this line of work because of the common goal of helping those in need,” said Dr. Nancy Murphy of the University of Utah. “Yet when providers lack the knowledge, experience or resources to render care, we tend to shy away from situations. This tends to happen without our awareness, and this research brings this issue into clear view.”

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.