Editor’s Note: Jenny is the mother of two children with special healthcare needs and a Patient & Family Advisor at her local children’s hospital. In addition to her lived experience, Jenny calls upon her professional experience as a social worker to help her write blogs from her home in Wisconsin. – Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics
Family Connections with Pediatrics
The first few years of my daughter’s life were marked by many stressful hospital visits. Most of our memories from these days involved cramped exam rooms, scary strangers, invasive tests, painful restraints, and no way to explain to her why all of these things needed to happen. Years later, we still take extra steps before, during, and after every doctor’s visit to make sure she feels safe and secure.
All children deserve health care that is compassionate, effective, and easy to access. This is especially true for children with neurodevelopmental disabilities who often face more barriers and more adverse events during healthcare visits. This month’s Pediatrics addresses this challenge in “Healthcare for Youth with Neurodevelopmental Disabilities: A Consensus Statement” (10.1542/peds.2023-063809).
This consensus statement outlines the Supporting Access for Everyone (SAFE) Initiative, a new approach to improving equity in healthcare that is based on research findings, clinical strategies, and input from people with neurodevelopmental disabilities.
What are neurodevelopmental disabilities?
Neurodevelopmental disabilities, or NDDs for short, are complex conditions in the brain that often result in the person with NDD needing extra medical and mental health support. NDDs can impact a variety of different areas including:
- Thought and reasoning
- Communication
- Motor skills
- Social skills
- Behavior
Some common NDDs include:
- Autism spectrum disorder
- Intellectual disability
- Attention deficit-hyperactivity disorder
How was the SAFE Initiative developed and what is it?
The SAFE Initiative included three phases:
- The formation of a diverse consensus panel
- A public forum
- The creation of ten consensus statements, using a method called Nominal Group Technique.
In the end, panel members agreed that these ten consensus statements fairly represented the opinions and ideas of the whole group and that they accurately captured the key principles of care.
In sum, SAFE Care:
- Is easy to understand, fair, and respectful
- Focuses on the child and family experience
- Reduces risk of physical and emotional harm
- Changes with the needs of the person
- Can be used throughout the entire life span
How do we achieve SAFE Care?
The consensus panel laid out five key areas of SAFE Care:
- Training
- Communication
- Access and Planning
- Diversity, Equity, Inclusion, Belonging, and Anti-Ableism
- Policy and Structural Change
Here are just a few of the suggestions from the statement:
- Make separate waiting rooms with dimmable lighting and scent free areas
- Provide sensory toolkits that include earplugs, headphones, sunglasses, fidgets, clay, gum, etc.
- Have shorter wait times, especially for patients with neurodevelopmental disabilities
- Allow for extra time to communicate using augmentative and alternative strategies
- Create care plans that are responsive to the unique support needs of each patient
- Ensure that all providers understand the impact of past trauma
- Require implicit bias training for anybody working with a person with an NDD
SAFE Care strategies ensure that all youth receive the care they deserve—whether they have an official NDD diagnosis, they are on the waitlist for an evaluation, or they have other neurodevelopmental needs that require additional sensory, social, and/or emotional support.
What can you do with this article?
- Review this article together with your child’s healthcare team. Providing SAFE care requires families and providers to work together as partners.
- Share this article with your regular healthcare clinics and hospital settings. If needed, highlight some of the strategies shared above to create a more inclusive environment for all patients.
- If you are a part of your hospital’s advisory council, notice the makeup of the group. Request to hear more diverse voices, especially people with NDDs and their families.
- Advocate for more funding to research initiatives like SAFE care. This consensus statement is just the beginning in shifting culture, mindset, and practice, but this needs to be a priority.
