We understand that many of you have questions about data sharing and privacy. We’ve received inquiries regarding a proposed federal Autism Data Platform, also referred to as the “Autism Registry.” It would be created by the Centers for Medicare & Medicaid Services (CMS) and the National Institutes of Health (NIH). Community members who have Medi-Cal are encouraged to review information on the Department of Health Care Services (DHCS) website about how DHCS shares their information, including immigration related information.
We also want to reassure our community about data the Department collects:
➡️ Protecting personal information is a top priority for the Department and regional centers.
➡️ We strictly follow state and federal privacy laws, including HIPAA.
➡️ We are committed to preserving access to essential services and supports for all Californians.
➡️ The Early Start program does make reports to the federal government, as required by law. However, this information is not about specific children and does not include diagnosis details or any other protected health information.