Capitol Correspondence - 02.15.19

ANCOR Comments to HHS on Making HIPAA More Reflective of Community Supports

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ANCOR submitted comments in response to the Department of Health and Human Services’ (HHS) Request for Information (RFI) on ways to improve the Health Insurance Portability and Accountability Act (HIPAA). HIPAA governs how providers protect the health information of people whom they support – but it can unnecessarily hinder how people with disabilities interact with the community. That is because the rule, developed mostly with the medical field in mind, does not reflect the community-oriented nature of supports for people with intellectual / developmental disabilities (I/DD) and the social integration goals of the disability community and policy-makers.

As such, ANCOR’s comments touch on the following issues:

  • Modifying the authority to disclose with other programs to be less burdensome, while still maintaining the integrity of an individuals’ protected health information (PHI).
  • Multi-disciplinary teams ability to access records.
  • The complexities of allowing parents / spouses greater access to an individuals’ treatment information.
  • Updating the definition of protected health information to reflect community supports.
  • Challenges posed by HIPAA requirements surrounding cell phones, social media and the listing of names.

ANCOR’s final comments can be accessed online by going to and typing in the comment-tracking number: 1k3-9883-eljl. Our comments may take a few days to post online but you can also find them here.