Standards Established to Improve Health Care for Kids with Disabilities

May 14, 2024

A panel of stakeholders crafted a consensus statement aimed at removing barriers to health care for youth with neurodevelopmental disabilities.

by Michelle Diament | May 9, 2024

Disability Scoop


A first-of-its-kind consensus statement is outlining new standards for providing health care to youth with autism, intellectual disability and other neurodevelopmental disabilities in an effort to overcome persistent inequities in care.


Developed by a panel of health care experts, adults with disabilities and caregivers, the plan published recently in the journal Pediatrics includes 10 statements across five key domains.


“At the heart of this (consensus statement) is an affirmation that all people are entitled to health care that is accessible, humane and effective,” reads the statement which backers hope will be adopted by regulatory bodies as part of their accreditation standards.


The statement includes calls for providers to be trained about caring for those with neurodevelopmental disabilities, improved communication with patients and their families and proactive planning in advance of health care encounters to ensure that patients are at ease and provided accommodations.


In addition, the consensus statement urges steps to address structural ableism, or assumptions by providers that people with disabilities have a lesser quality of life, as well as broader changes within hospitals and similar settings to strengthen care. It also recommends advocating for policy updates so that reimbursement rates and payment models better address the needs of patients with neurodevelopmental disabilities, for example.


Those behind the consensus statement note that individuals with neurodevelopmental disabilities are more likely to have co-occurring medical and mental health conditions, yet they remain at greater risk for adverse events in medical settings including restraint, seclusion and injury that can lead to long-term health issues and higher mortality rates.


The concerns led the Developmental Behavioral Pediatrics Research Network and the Association of University Centers on Disability to establish the Supporting Access For Everyone, or SAFE, Initiative, which is responsible for the new consensus statement.


The panel that crafted the statement relied on existing research as well as testimony from 40 presenters at a public forum to find common ground on ways to address health disparities faced by this population. The resulting document is intended to evolve over time.



“Everyone has a right to equitable and compassionate health care,” said Dr. Carol Weitzman, a coauthor of the consensus statement and a developmental-behavioral pediatrician at Boston Children’s Hospital. “We hope this statement leads the process towards changing culture, attitudes and policies across health care systems which must include the fiscal considerations of equitable care. Individuals with (neurodevelopmental disabilities) can no longer be treated as an afterthought.”



May 13, 2025
We’re still smiling from Active for Autism 2025 — and it’s all thanks to YOU! Whether you walked, ran, sponsored, volunteered, donated, or simply cheered us on, you helped make this year’s event one of the most impactful yet. Thanks to your incredible support, we raised $ 87,153.43 (and counting!) , marking a 24 % increase from last year. Every dollar goes directly toward programs and services that inform, support, and connect families of individuals with autism and other developmental disabilities across our community. The energy on event day was unmatched — from families walking hand-in-hand, to kids enjoying the Fun Fest, to teams showing up in vibrant shirts and big smiles. Your presence showed the true power of community. We are beyond grateful to our: Participants who showed up with passion and purpose Sponsors who helped make the event possible Vendors who brought fun and resources to the day Donors who gave generously Volunteers who offered their time, heart, and hands A Special Thank You to Our Co-Sponsors We are especially thankful for our co-sponsors whose generous support elevated this event: Enbridge, 100.7 The Tiger, and Ochsner’s Children’s . Your partnership helped amplify our mission and impact. Thank you for standing with us! Thank You to All Our Sponsors We are grateful to all of our sponsors who make this event possible year after year. Your generosity directly supports families and individuals in our community. 2025 Active for Autism Sponsors: Presenting Platinum Sponsors: Enbridge, 100.7 The Tiger, and Ochsner Children’s Hospital Gold Sponsors: REV, The Nirel Group Foundation Silver Sponsors: Olivier Group, Behavior Intervention Group, Louisiana Blue, Hood Container Corporation, and Mayor-President Sid Edwards Bronze Sponsors: BREC, Associates in Pediatric Dentistry, Wampold Companies, ACE Enterprises Inc., Ascent Behavior Therapy Center, Williams Photography, and Maughan Law Firm Patron Sponsors: BearCom of Baton Rouge, Gulf South Autism Center, The Baton Rouge Clinic AMC, Our Lady of the Lake Children’s Hospital, Mercy Autism Center, Kidder & Schultz CPA LLC Governmental Supporters : State Senator Regina Barrow, Iberville Parish, and West Baton Rouge Parish Together, we’re making real change — not just during this event, but every day of the year. 📅 Mark your calendar : Active for Autism 2026 will take place on Saturday, April 25, 2026 . We can’t wait to celebrate and walk alongside you again. From all of us at Families Helping Families of Greater Baton Rouge: Thank you for helping us keep families informed, supported, and connected. We are families helping families. That’s what we do. That’s who we are.
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