Freeing the Data for New York State Public Benefit Applicants

Hundreds of colorful medical record folders crammed into bookcases.

Written in collaboration with Erin Mackay of GetMyHealthData.

Finally, some health care news worth celebrating. Last month, Governor Cuomo signed into law a bill guaranteeing free access to medical records for people applying for government benefits or programs. This is an advocacy victory for all New Yorkers and people with disabilities.

If you’ve tried it, you know: getting medical records is tough. Too difficult in our modern, connected world, and yet essential to our ability to take care of our health, or care for a loved one. New Yorkers trying to document their eligibility or claim for public benefits are required to submit medical records.

The Center for Independence of the Disabled, NY (CIDNY) and GetMyHealthData, a project of the National Partnership for Women & Families, have worked together to help New Yorkers understand and exercise their rights to their own health information. We commend New York lawmakers for this step in the right direction. Effective immediately, this new legislation will remove one critical barrier for applicants trying to access benefits that support their health, well-being, and economic security.

Our advocacy work is informed by stories from real people struggling to navigate the health care system efficiently. At GetMyHealthData, we have documented how difficult it is for people to get health information for themselves or a family member. We have heard time and again that cost is a major barrier for people who need their health records. People reported costs for accessing information via patient portals and per-page fees for electronic copies of records. Some said they faced “surprise” charges of hundreds of dollars, with no estimate provided in advance.

CIDNY has heard similar stories. In New York, health care providers can charge up to 75 cents per page for copies of paper medical records, which can number in the hundreds of pages – per doctor. These fees can become an insurmountable barrier for low-income New Yorkers and people with disabilities. It can keep people from submitting successful applications for Social Security and Medicaid benefits, as well as some Veteran’s benefits. Without these records, eligible applicants are denied. With wait times for appeals of Social Security benefits and Veterans benefits of more than a year, a denial at the application stage often means the difference between keeping or losing your home.

We encourage more states to follow New York’s lead and eliminate financial barriers to accessing medical records so more of us can use and share the information we need to get and stay healthy.

Share your experience trying to get medical records or other health information in the comments and at