The Department of Health and Human Services (HHS) has issued new guidance on HIPAA (the Health Insurance Portability and Accountability Act.) This guidance will facilitate families of children with disabilities being able to obtain medical records, including waiving fees and sharing with third parties if requested.
Families of children with special needs have had difficulties accessing and sharing their child’s medical records due to costs or being unable to easily communicate with other providers. The National Partnership for Women and Families press release (see Resources) indicated that highlights of the guidance include:
The GetMyHealthData campaign is led by the National Partnership and includes other consumer groups and health care experts including technology groups and former policymakers. There is a website (see Resources) that helps families navigate the process for requesting medical records. Various issues are addressed with resources (see endnotes for links) on what to do if consumers are told:
There are additional tips on the website on what consumers can do if they’re told they need to pick up records in person, if they’ve sent a written request but received no response, or if there is missing or incorrect information in records.
This new HHS guidance will help clarify some of the confusion around HIPAA which creates unnecessary obstacles in getting health care records. By being proactive, families of children with special health care needs can eliminate these barriers and more easily access medical records needed to provide the best care for their child.
vi http://www.hhs.gov/sites/default/files/righttoaccessmemo.pdf; see also http://www.hhs.gov/hipaa/for-individuals/personal-representatives/index.html
Lauren Agoratus is the parent of a child with multiple disabilities who serves as the NJ Coordinator for Family Voices. She also serves as the southern coordinator in her state’s Family-to-Family Health Information Center.