Children’s Mercy Kansas City Launches Pilot Program to Help Caregivers Navigate Autism Diagnosis

Children’s Mercy Kansas City has launched the Autism and Neurodevelopment Continuity Clinic (ANDCC) – a new pilot program to help support families and caregivers of children 3 years of age and younger who have recently received an Autism Spectrum Disorder Diagnosis (ASD).

Each year, more than 250 children in this age group are diagnosed with ASD or global developmental delays at Children’s Mercy. The ANDCC is designed to supplement - not replace - primary care visits and was created to offer autism-specific guidance for frequent health and behavior concerns, help families access and navigate different therapies, community resources and state disability support programs, and provide emotional support overall.

“The goal is to help families through those crucial first years with regular check-ins to ensure they are well-connected to resources and a support system,” said Cy Nadler, PhD., Clinical Psychologist, Developmental and Behavioral Health, Children’s Mercy. “We know kids reach their highest potential when families are supported and bridging that gap is the first step.”

In-person or telehealth “autism well visits” will start after a new diagnosis, and then be scheduled annually. Each appointment is started with checking how the family is doing emotionally, then working through a checklist of resource action items and discussing any concerns.

“Caregivers need reassurance and positive encouragement to know they’re doing the right thing,” said Hannah Wolf, APRN, Developmental and Behavioral Health. “They like to know that someone is there to support them, that they can send someone a Portal message if they have a question and get direction on where to go.” 

The pilot program will begin by serving patients diagnosed before age 3, but the long-term goal is to expand to serve all pediatric patients who need this support.

Thanks to nearly $515,000 raised by over 50 generous donors, the ANDCC pilot is part of a larger suite of services available to children (of any age) and their families before and after a new diagnosis, which includes:

·         The Autism Family (Virtual) Training Series: Free webinars for parents and caregivers on key autism topics. 

·         A recorded archive of those webinars and other training modules for on-demand learning. 

·         Routine family needs assessments and navigation for families seeking community-based supports.

·         The Research Units in Behavioral Intervention (RUBI) Autism Parent Coaching Program.

·         In-house clinical services in Developmental and Behavioral Health and other subspecialties. 

·         An annual conference for caregivers, scheduled for April 29, 2024. 

The ANDCC pilot program is one of 14 Illuminate projects that will be implemented over five years.  

Click here to learn more about the ANDCC and other resources offered at Children's Mercy.