advocacy

Michael’s Story

I moved into my first apartment in Westchester when I turned 21. I was excited to finally have my own place as I was the youngest of three children growing up in a small house in Bellerose, Queens.

I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2000 and my disease was progressing. The four story walk up I had moved into went from being a fascinating and active home to being a challenging and eventually harmful place to be.

I began to have weakness in my right leg, among other symptoms, and falling became a problem. I fell on my way to my building. I fell going up the stairs and I fell inside my apartment. I was very lucky though: the worst fall I ever had left me with only a concussion, stitches, and a sprained knee.

My doctor advised me that I should seek treatment in a place that was more conducive to treatment to help avoid worsening symptoms. I began seeing doctors in specialized medical centers in Manhattan.

As my condition progressed, I began experiencing challenges commuting. It was difficult taking care of myself because transportation took so much energy from me, not to mention the daily chores that kept getting done poorly or not at all. I hoped to stay in my apartment for a little while more, save some money, and perhaps meet someone to start a family. But the small savings I had quickly diminished from transportation, tuition, and medical bills. I continued on for a few years like that, enduring relapses and then some remissions, but overall, my illnesses continued to progress.

Eventually, I could no longer pay rent and had considerable trouble taking care of myself. It was time to swallow my pride and ask for help before things got worse. I tried talking to others in similar situations in physical therapy or support groups. I went on endless internet searches and even good old fashioned trips to the library. Also, doctors, social workers, and medical staff advised me of other options, but no one, including myself, could fully grasp my medical conditions and ensure a way for me to survive on my own in a stable, safe, and healthy manner for the long term.

At this point, working part time actually made me sicker and never paid enough. My illnesses were variable and getting the right course of action was tricky. I had to apply for benefits.

I sought help from the National Multiple Sclerosis Society, CHOICE of New Rochelle, and other agencies, which were helpful in finding resources, counseling, and advocacy. I graduated from college and lived in my own apartment while dealing with relapses and life in general.

Eventually, a peer referred me to the Center for Independence of the Disabled, New York. CIDNY counselors helped me find updated housing and employment information, maintain proper health insurance, and find affordable, ongoing treatment.

Finding housing during this moment in my life was a huge challenge now that my illness was progressing.

I had to learn so many things to accomplish my goal of remaining independent. I had trouble explaining the details of my situation because I had new symptoms that affected my cognitive functioning. I couldn’t process many things around me effectively, especially when faced with deadlines or long wait times at government agencies.

My counselors learned the details of my situation and how my illness was affecting me. I was advised about proper terminology, programs, employment issues, and an impressive amount of opportunities available to the disabled community. I got excited and thought I could finally get my life on track.

Yet, there were more challenges in finding proper accessible housing, going back to work, and maintaining healthcare while trying to manage an illness.

Deadlines came and challenges were placed in front of me. I had to accept that returning back to work may not be a reality, at least not anytime soon.

After working with counselors who got to know me and my situation, years of forms and filing, something started to click and I learned how to better advocate for myself. I learned about laws that protect disabled people and programs that were becoming available. Most importantly, I learned how to find proper healthcare and housing and take action when appropriate. It took me about six years before I actually got a place that was suitable for me.

I often turned to my counselors and told them I couldn’t do it without them. They would tell me, “You were the one who did the work.”

I still have a way to go on my journey and my illness will continue to progress, but so will my life. Since working with CIDNY and the MS Society, I have married the most loving woman on Earth, improved my diet and exercise routine, found more suitable housing, and, of course, maintained medical treatment.

I’m aware the journey will go on and there will always be more to learn, especially during challenging times, but I know there are good places to rely on for answers and support, and the Center for Independence of the Disabled, New York is definitely one of them.

I still go to the CIDNY offices now. But lately, it’s to get help for my parents, to advocate, or to volunteer—which is one of the greatest kicks of all.

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.