Confidentiality & HIPAA for DDS Participants

Privacy is a major concern whenever a person receives medical care. Given the extremely personal nature of medical records, there has been significant effort to ensure all such data remains tightly protected. To accomplish this, state and federal law require that every person’s individual medical history is protected. Most important is the federal Health Insurance Portability and Accountability Act (“HIPAA”). This is the main law that ensures all personal medical information must remain private and protected. While HIPAA is a federal law, it is also the primary legal protection for individuals who receive care and services at the state level, through the California Department of Developmental Services (“DDS”). Because it is such a central part of the DDS, it’s important for you and your loved one to fully understand confidentiality and HIPAA for DDS participants.

What California DDS Participants Need to Know About HIPAA

Put simply, HIPAA sets national standards for protecting medical records and other personal health information. For individuals receive care and services through California DDS, this means that medical details, service records, and personal identifiers cannot be shared without permission. There are very limited and specific circumstances when a person’s information may be shared. But in general, the default rule is that all personal medical information must remain private. All regional DDS centers and service providers must comply with HIPAA.

Confidentiality also applies to day-to-day services. Staff, providers, and case managers within the DDS system are obligated to protect patient information. This includes data about an individual’s health, living situation, and the care or services they receive. For example, records cannot be disclosed to employers, schools, or outside agencies without written consent. Families and guardians also have rights to access certain records, but only in ways that comply with state and federal law.

If a participant believes their HIPAA confidentiality rights have been violated, they can file a complaint. Most immediately, this can be done through a local regional center. Alternatively, complaints can be filed directly with California DDS. Additionally, you can file a complaint with the U.S. Department of Health and Human Services (“HSS”). For added confidence in filing a complaint, there are also important legal protections in place to guard against retaliation.

In short, confidentiality & HIPAA for participants guarantees that individuals served by California DDS can access the support they need while maintaining control over their personal and medical information.