ICAN Helps New Yorkers Who Need Long-Term Care

New York State’s Independent Consumer Advocacy Network (ICAN) program helps New Yorkers with disabilities with their health insurance and long-term care problems. Long-term care includes care in a nursing home or in your own home with help from an aide. Personal care aides can help with activities like getting dressed, walking, and going to the bathroom.

The way the long-term care system works can be hard to figure out, which is why ICAN is here to help.

ICAN is a group of advocates and lawyers from different organizations across New York State, including CIDNY. ICAN’s staff at CIDNY are experts in the long-term care system and handle a wide range of cases from all five boroughs of New York City. Our staff provides services ranging from simple advice to representing people at appeals, free of charge.

In 2015, New York State created both the Independent Consumer Advocacy Network (ICAN) and the new Fully Integrated Dual Advantage (FIDA) insurance plans. FIDA was intended to make it easier for people with both Medicaid and Medicare to get health care. 

When people with Medicaid become eligible for Medicare, they usually have to change their Medicaid plan. Then they have to figure out how to use their separate Medicaid and Medicare insurance on their own to get health care. These “dual-eligibles” generally need more care than most people with only Medicaid. The State hoped that setting them up with a single plan that combines their Medicaid and Medicare would make it easier for them to get services. 

Many people were confused by the changes.

Luckily, ICAN was created to help people navigate the new long-term care system at the same time as the new FIDA program. ICAN helps people who need long term care services with any kind of Medicaid managed care: FIDA, FIDA-IDD, MLTC, MMC, PACE, MAP, and HARP. ICAN’s services include answering people’s questions, giving advice, advocating with plans or agencies, and representing people in formal appeals.

If your managed care plan denies coverage for services you need, ICAN can help you fight to keep your services.

Here are some real examples of how CIDNY’s ICAN advocates have helped consumers:

Fran* fell and hurt herself and had to go to the hospital. After she recovered, her family wanted to bring her home, but her insurance plan refused. They said she needed more help than they were providing, but did not want to pay for more. With ICAN’s help, she was able to get the plan to pay for 24-hour help, which let her live at home.

Carolyn* was stuck on the second floor of her family home and couldn’t get out on her own. The insurance company had promised to send people to carry her wheelchair down the stairs whenever she needed to go out, but they never actually did. ICAN helped her get a stairlift so that she could go out whenever she wanted.

CIDNY’s ICAN staff understand how difficult it can be for New Yorkers with disabilities to get the help they need. If you are confused about the long-term care system or a notice you received, you can call ICAN’s toll-free telephone help line at (844) 614-8800. ICAN’s staff will answer your questions and will try to help you solve your problems. See how ICAN has helped other New Yorkers with disabilities on ICAN’s website.

(*Names changed for confidentiality.)

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.