Youth with neurodevelopmental disabilities (NDDs) such as autism spectrum disorder (ASD) often have higher health care utilization than their neurotypical peers but also worse health care outcomes, including higher rates of morbidity and mortality.
Many children with NDDs experience stress, anxiety and behavioral dysregulation during health care encounters, which can result in reduced access to preventive care, higher rates of foregone care and more adverse events.
Recent initiatives aim to improve care for children with NDDs and reduce these inequities.
SAFE initiative
The Supporting Access for Everyone (SAFE) initiative was developed under the leadership of the Developmental Behavioral Pediatric Research Network (DBPNet) to establish a standard of care for youth with NDDs.
DBPNet convened a diverse panel of professionals, caregivers and adults with NDDs to develop the initiative. It also partnered with the Association of University Centers on Disability to hold a public forum where 40 professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented their experiences and research.
After the forum, the expert panel developed the consensus statement Health Care for Youth with Neurodevelopmental Disabilities, which was published in Pediatrics in 2024. It represents the first interprofessional, community-informed consensus statement establishing a standard of care for youth with NDDs.
Ten consensus statements on best practices for SAFE care were developed across five topical domains: 1) training, 2) communication, 3) access and planning, 4) diversity, equity, inclusion, belonging and anti-ableism, and 5) policy and structural change (see table). It also developed an NDD Health Care Bill of Rights (see sidebar).
The statement defines SAFE care as:
- care that individuals understand and want;
- individualized and evolving with the changing needs of a person;
- accessible throughout the lifespan;
- equitable and respectful; and
- defined and measured by patient experience, quality of care and psychological well-being of patients and caregivers.
The consensus statement also offers a roadmap for how professionals can engage in efforts to implement SAFE care.
HEADs Up Act
The Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act is a bipartisan bill that would designate people with developmental disabilities as one of the special medically underserved populations under the Public Health Services Act. This designation would unlock access to health care funding from approximately 25 federal agencies for people with ASD/NDDs.
In addition, the HEADs UP Act would promote the recruitment and training of health care professionals with knowledge and expertise to work with people with ASD/NDDs through incentives like medical school loan repayment, improved payment rates for services and grant funding to health centers from the U.S. Department of Health and Human Services (HHS). These actions could lead to a more robust workforce that would promote SAFE care for people with ASD/NDDs.
The bill was introduced in 2023 and needs to be reintroduced in the 119th Congress, which convenes in January.
In partnership with the AAP Section on Developmental and Behavioral Pediatrics, the Society for Developmental and Behavioral Pediatrics (SDBP) has been promoting the HEADs UP Act and was a sponsoring organization for a lobby day at the U.S. Capitol in July 2024. In addition, more than 100 developmental-behavioral clinicians visited members of Congress in September 2024 to advocate for passage of the bill.
What pediatricians can do
The changes outlined in the SAFE consensus statement involves basic human rights for all. Following are actions pediatricians can take now to create SAFE health care settings and advocate for passage of the HEADs UP Act, both of which stand to improve the lives of people with ASD/NDDs and reduce morbidity and mortality rates.
- Ask your congressional representative to co-sponsor the HEADs UP Act (HR 3380).
- Ask your senators to introduce a HEADs UP Act companion bill.
- Ask your governor to request a Governor’s Exceptional Medically Underserved Population designation in your state from HHS.
- Write a letter to the editor of your local newspaper sharing how health care barriers affect you and your patients/families.
- Develop partnerships in your health care setting to develop an action plan to provide SAFE care.
- Complete an office scan to identify accommodations that would create a SAFE setting.
- Advocate for training of all health care personnel in ASD/NDDs and the need for SAFE care.
- Join a learning collaborative launching in January. Visit https://safedbp.org/about-initiative/.
NDD Health Care Bill of Rights
Individuals with NDDs are human beings who are entitled to human rights and dignity. This NDD Health Care Bill of Rights articulates that people with NDDs have the right to:
- Give or refuse consent/assent and participate in shared or supported decision-making.
- Access care that is proactively adapted to meet their needs.
- Use their preferred mode of communication (spoken words, sign language, augmentative and alternative communication, etc.) and be communicated with in a format they can understand, with the support and technology they need.
- Receive effective pain and anxiety management.
- Advocate for their own needs and best interests.
- Receive care that is not traumatizing.
- Be treated as a person, not simply a diagnosis.
- Experience timely, courteous and respectful care.
- Be free from restraint, coerced care and maltreatment.
Dr. Weitzman is a member of the AAP Section on Developmental and Behavioral Pediatrics. Dr. Augustyn is a member of the section’s executive committee.