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#Self Advocacy

on March 14, 2019

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AMCHP is Awarded $3.4M to Form National Coordinating Center on Transition

"The Project, which started on September 1, 2024, aims to develop and advance national, state, and local/community frameworks that support a successful transition from child to adult serving systems for youth with autism and/or epilepsy who have complex health and social needs and require a higher level of family support and coordination." Read more about the project here

Podcast for Parents, Caregivers, & Providers of People with Disabilities

Adjusting the Sails is a podcast about the lives and specific challenges children with special healthcare needs and other disabilities face along with their families, caregivers and service providers, and how to manage those challenges. The podcast is a platform for all disability-related topics to be discussed and serves as a mediator between families and caregivers, allowing them to share their stories and experiences. Adjusting the Sails features guest speakers, panelists and a variety of program representatives and service providers to offer education and training to the listener. This podcast is sponsored by the West Virginia Department of Health and Human Resources, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and produced by the West Virginia University Center for Excellence in Disabilities.

Do you have a story about your experiences interacting with the health care system for your child with disability or medical complexity?

The University of Wisconsin-Madison and the Bluebird Way Foundation are developing a series of Family-Led Academic Grand (FLAG) Rounds focused on addressing ableism in pediatrics. FLAG Rounds flip the traditional model of Grand Rounds by having families with lived experience, rather than clinicians, educate medical students and residents. Families whose stories are selected will receive mentoring to further develop and present their stories in one of five virtual FLAG Rounds sessions. Sessions begin in January 2025. Share Your Family's Story by October 1 Learn more & submit your story