P2.048: School Advocacy Integrated into Primary Care of the Complex Child

Background: Children with complex and chronic medical conditions require additional educational and behavioral support in school settings. It is often children with more subtle disabilities (post-traumatic stress disorder, high functioning autism, learning disabilities, attention deficit-hyperactivity disorder, anxiety, and depression) that require increased advocacy to find appropriate services and placement.  

Many children with disabilities require Individualized Education Plans (IEP) and 504 plans to meet their emotional, behavioral, and educational needs. However, it is this exact population that is often lacking the appropriate supports. The failure to provide appropriate school-based services has been attributed to insufficient training, lack of administrative support, and limited personnel to provide services. 

Under the Individual with Disabilities Education Act (IDEA), parents have the right to procedural safeguards if there is a concern about the services their child is given. However, many parents from low-income and minority populations lack the time, systems knowledge, and agency to achieve this. Parents must also be able to collaborate with school officials and navigate the complex regulations around due process and mediation when disagreements arise. 

These challenges can make it difficult for parents to advocate effectively for their children without any external assistance. A school advocate would support parents by assisting in understanding the special education process and their rights.

Project Description: Our multifaceted goal included integrating a school advocate team consisting of an Integrated School Liaison (ISL) and a Community Health Worker (CHW) within our outpatient clinic setting who would collaborate with our La Rabida outpatient physicians and staff, provide education to parents regarding the special education process, work with Chicago Public Schools to host Child Find screenings on our medical campus, and increase education to school staff regarding trauma-informed care.

Discussion: The grant awarded by Cook County Health runs from September 2024 through November 2026. In the first five months of the program, there have been 227 referrals to our ISL/CHW for school advocacy supports. There have been 86 IEP/504 meetings attended with families and 303 contacts with parents to discuss their concerns and goals around special education. We have hosted one Child Find event with two planned upcoming. Next steps will include partnering with Chicago Public Schools to host trauma-informed trainings.

Conclusion: Given the large number of consultations of our ISL and CHW since the start of our program, it is abundantly clear that families are open and wanting support with navigating the special education process in schools. Integrating the ISL/CHW into the primary care clinic has facilitated real time consultations with families and has allowed for improved collaboration with medical providers. Meeting the educational needs of a child is part of their medical care and this model allows a succinct approach to ensure the child is cared for in a holistic manner.