Resources
Below are resources we have used as parents of a child with Autism and chromosomal abnormalities. Please let us know if you have any other resources that may help others.
Katie Beckett Waiver
The Katie Beckett Waiver is a Medicaid program available in many U.S. states, designed to provide healthcare coverage for children with disabilities or complex medical needs. The waiver allows families to access Medicaid benefits for their child, regardless of the parents' income or assets. This program ensures that children with significant health conditions can receive necessary care and services without being institutionalized.
https://medicaid.georgia.gov/programs/all-programs/tefrakatie-beckett
Chromosome 6 Project
The Chromosome 6 Project is a parent-driven research initiative focused on understanding the relationship between specific genetic changes on chromosome 6 and their clinical manifestations. By collecting detailed phenotype information—such as clinical characteristics, development, behavior, and appearance—directly from individuals or their parents, the project aims to create a comprehensive genotype-phenotype map of chromosome 6.
NORD
The National Organization for Rare Disorders (NORD) is a U.S.-based nonprofit organization dedicated to supporting individuals with rare diseases. Founded in 1983, NORD's mission encompasses advocacy, research funding, education, and fostering connections among service providers to improve the lives of those affected by rare conditions.
Autism Speaks
Autism Speaks is a leading U.S.-based nonprofit organization dedicated to promoting solutions for the needs of individuals with autism and their families. Established in 2005 by Bob and Suzanne Wright, the organization focuses on advocacy, support, and research to enhance the quality of life for those affected by autism spectrum disorder (ASD).
Hopebridge Autism Therapy Centers
Hopebridge, LLC, founded in 2005, is a healthcare organization headquartered in Indianapolis, Indiana, specializing in personalized therapy services for children and families affected by autism spectrum disorder (ASD) and other developmental challenges. Their services include applied behavior analysis (ABA), occupational therapy, speech therapy, and feeding therapy. Hopebridge operates state-of-the-art autism therapy centers across multiple states, including Arizona, Colorado, Florida, Georgia, Indiana, Kentucky, and Ohio. Hopebridge is committed to providing a trusted place where children can receive the care, support, and hope they deserve.