Editor’s Note: In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
Family Connections with Pediatrics
Sometimes when I think about the systems of care—health, education, social service, justice—for children with specific healthcare needs, I picture a field. A vast field of green that seems to stretch all the way to the horizon. The fields are filled with all kinds of silos; the towers that hold corn, grain, and other products. So many silos everywhere, but none of them connect. They just loom tall above you, with no way in and no way to move from one to another.
That is how our family often experienced systems of care for my daughter. This is how many families experience systems of care for their children. This is especially true for autistic children who are Black or Hispanic where access to evaluation and diagnosis is often delayed.1 Many of these children sit for years on waiting lists or worse yet, their families run around the field of silos, like they are in a maze without a map or directions.
These barriers deeply affect all of us, but where do we start? How do we connect the silos? Sometimes our efforts start small, with one silo, with one clinic or one care team at a time. In this month’s Pediatrics an Advocacy Case Study entitled, “A Multi-System Approach to Improving Autism Care,” describes a 5-year effort to improve autism care at Children’s National Hospital and across the District of Columbia (DC) (10.1542/peds.2022-060584).
How did this group approach advocacy?
Advocacy efforts focused on 3 levels:
- Infrastructure: Initiatives to build systems that create access to care. One example of this type of work is a workgroup created to address barriers to care for children with neurodevelopmental concerns across departments within the hospital. Before this group, departments providing autism care often worked on their own, siloed in different locations and clinics.
- Education: Enabling services to build capacity and connect providers and families to needed resources. Examples of work at this level focused on training for early intervention staff and doctors. The team created trainings and toolkits specific to the community of Washington DC.
- Connection: Direct services that create new ways to fill gaps in services. An example of an innovation at this level was the creation of the Autism in Primary Care (APC) Program that placed psychologists in pediatricians’ offices to provide evaluations for children who were under 5 years and referred by their doctor with high concern for autism.
Details of the many levels and layers of this work, including tables that visually lay out the work and list the organizations, professions, and families involved, can be found in the article.
What were some of the outcomes and lessons learned?
The authors discuss the outcomes that have improved access, removed barriers, and brought people, organizations, and the government across systems in DC together for discussion. Examples of outcomes shared in the article include:
- Breaking down of silos
- Creation of online resources to make different autism assessment options locally clear
- Successful advocacy for key DC Medicaid policy and regulation changes, such as expanding the types of behavioral healthcare providers and increasing the budget for autism care
The authors also took time to lay out the barriers they faced and the lessons learned in overcoming them, such as:
- Finding partners to start the work
- Identifying clear guiding principles for the work
- Starting small to ensure initial success and momentum
- Working across the health care and educational system
- Diversifying financial and in-kind support to keep the work going
What can you do with this article?
- Even if your child does not have autism, the layers and depth of this advocacy work could be helpful for working to improve care in any field.
- If you are part of a group that is forming or has been working on breaking down silos in the fields across systems of care in your state, read and share this article for ideas.
- Spend some time with the barriers and lessons learned. They may help you to connect and break down silos, rather than build more.
- Constantino J, Abbacchi A, Saulnier C, et al. Timing of the Diagnosis of Autism in African American Children. Pediatrics. 2020;146(3):e20193629. doi:10.1542/peds.2019-3629