people with disabilities

Freeing the Data for New York State Public Benefit Applicants

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 getmyhealthdata.org/share.

CIDNY Writers Workshop – A Great Outlet for Creativity

Since 2009, CIDNY and the New York Writers Coalition (NYWC) have teamed to produce a Writers’ Workshop for people with disabilities at CIDNY’s Manhattan offices. The workshop provides a safe space for people with disabilities to express their thoughts and stretch their creativity through writing.

Avra Wing, the facilitator for CIDNY’s workshop, said she was, “amazed and astounded and fascinated by the directions people’s creativity takes them.” Avra is a poet, essayist, and novelist and is also a person with a disability.

In 2011 selections from CIDNY’s group were published in a book produced by the New York Writers’ Coalition, Insight Out. The book is available on Amazon. The group has also performed public readings at the Jefferson Market Library on 6th Avenue.

CIDNY’s popular and highly successful writers’ group welcomes new members at any time. The group meets every Thursday from 3:30-5:30. Watch CIDNY’s calendar for information. Call 212-674-2300 to find out more and how to join.

From time-to-time, we will publish people’s selections on this blog or on our storytelling page. We encourage you to respect the rules of the group – no hostile or negative comments about someone’s writing, but feel free to react to what in the story resonated with you or what you enjoyed about it.

Starting us off is Samaris Ayala, a long time CIDNY participant and volunteer, who sent us this poem:

the community

may help

people with

benefits

the community

heals itself

by helping

the most

unfortunate

nothing

wrong

with helping

those who

receive

benefits

Report on City Curb Cuts Agrees with Disability Community Concerns

People with disabilities who have trouble using New York City sidewalks and curb cuts have a reason for hope.

A Special Master, someone appointed by a judge to make recommendations, looked at a proposed settlement on curb cuts. He is a national expert on the Americans with Disabilities Act and disability rights. It is now up to Judge Daniels to accept all or some of the Special Master’s twelve recommendations.

The Special Master agrees with our arguments and concerns. We are pleased that our advocacy and statements made by people with disabilities made a difference.

In 2014, CIDNY staff and volunteers surveyed 1066 curbs in lower Manhattan. We showed the horrible conditions of the City’s curb cuts. At the same time, a settlement negotiated with the City by United Spinal was being reviewed. Judge Daniels agreed that other groups representing people with disabilities could weigh in on the new proposal.

CIDNY, with other coalition partners and individuals with disabilities represented by Disability Rights Advocates and Cravath Swaine & Moore LLP, told the court that the new proposal didn’t work for all people with disabilities. We told the Judge that the proposal did not require the City to follow the Americans with Disabilities Act (ADA). It did not include the needs of people who are blind. It did not give the City deadlines, a monitoring process, or ensure that curb cuts would be fixed to meet requirements of the ADA in the next 20 years.

Advocates from CIDNY and our coalition partners shared their experiences trying to use City streets. People who use wheelchairs or who are blind told the Judge about having to get off the sidewalks and into traffic because of missing or bad curb cuts. They told the Judge about ending up in the middle of an intersection when curb cuts didn’t have raised bumps that let them know they are leaving the sidewalk. People also told of tripping or having their wheelchairs tip over because of bad curb cuts.

Testimony by New Yorkers with disabilities helped the court and the Special Master understand the need for a better settlement on curb cuts.

You can help us continue to make a difference. We work on a lot of issues that affect people with disabilities. These include health coverage, transportation, housing, education, and employment. To find out more or to get involved, contact Monica Bartley (mbartley@cidny.org). Monica can connect you with our CIDNY Action Network. She can help you get involved in specific advocacy activities or learn more about what we’re doing. Your voice can be heard.