A committee of stakeholders developed a consensus statement aimed at removing barriers to health care for young people with neurodevelopmental disorders. (Karl Justo/Miami Herald/TNS)
The first-of-its-kind consensus statement outlines new standards for providing health care to young people with autism, intellectual disabilities and other neurodevelopmental disorders as part of an effort to overcome persistent inequities in care.
Developed by a panel of health professionals, adults with disabilities and caregivers and recently published in the journal Pediatrics, the plan includes 10 statements across five main areas:
“At the heart of this (consensus statement) is the assertion that all people have the right to accessible, humane and effective health care,” the statement said, and supporters hope it will be adopted by regulators as part of their accreditation standards.
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The statement includes calls for more training for health care providers on caring for people with neurodevelopmental disorders, improved communication with patients and their families, and proactive planning before seeking care to help patients feel comfortable and receive appropriate care.
Additionally, the consensus statement urges measures to address structural ableism — healthcare provider assumptions that people with disabilities have a lower quality of life — and broader reforms to enhance care within hospitals and similar settings. It also recommends advocating for policy updates so that reimbursement rates and payment models better address the needs of patients with neurodevelopmental disorders, for example.
The consensus statement’s authors note that although people with neurodevelopmental disorders are more likely to have co-occurring medical and mental health problems, they remain at higher risk for adverse health care settings, such as restraints, seclusion and injuries, that can lead to long-term health problems and increased mortality.
These concerns led the Developmental Behavioral Pediatrics Research Network and the Association of University Centers on Disability to create the Supporting Access for All (SAFE) initiative, which is the focus of a new consensus statement.
The committee that developed the statement drew on existing research and the testimony of 40 presenters at a public forum to explore common ground about how to address the health disparities facing this population, and the final document is intended to evolve over time.
“Everyone deserves fair and compassionate health care,” said Dr. Carol Weitzman, co-author of the consensus statement and a developmental behavioral pediatrician at Boston Children’s Hospital. “We hope this statement will lead to a process of culture, attitude and policy change across the health care system, including financial considerations of equitable care. No longer can people with neurodevelopmental disorders be an afterthought.”
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