Yes We CAN: CIDNY Action Network Members Share Their Experiences, Featuring Elizabeth Melas

For this series, students from Hunter College interviewed CIDNY Action Network members and staff about their work with us and what brought them to organizing. Author Nadia Guennouni is currently working towards her Masters in Mental Health Counseling.

Elizabeth Melas was born and raised primarily in Greece as an American citizen living abroad, until she came to the United States for high school in 2004. During her junior year of high school, Elizabeth developed a large tumor around her brain stem that required immediate removal. The removal of the tumor left lasting damage that caused neurological ataxia, which in turn caused speech and vision problems as well as the inability to walk. She went on to get her Bachelor’s degree in International Criminal Justice at John Jay College of Criminal Justice.

“I did not let any of that stop me from being me,” Elizabeth says. She identifies as an activist, first and foremost. Elizabeth is deeply rooted in justice in all forms, particularly political, social, and environmental. She is a strong advocate for the rights of people with disabilities, the rights of immigrants, and the right to a clean environment.

Her first foray into activism was at a Bernie Sanders rally in 2014, which changed how Elizabeth viewed her role in the world of activism. Prior to that rally, she always had an interest in activism, even as a child. Elizabeth says, “I’ve been an activist mentally since I was 7 years old, but I did not know how to get involved until recently when I started going to rallies.”

Since that rally in 2014, Elizabeth has gone to several more rallies and marches, even speaking to a crowd of 13,000 people. Elizabeth has also participated in events with New York Progressive Action Network (NYPAN) and Rise and Resist. NYPAN mobilizes citizens and advocates for, and defends, the well-being of the people within its communities through conferences and lobbying at the local and state level. Rise and Resist (RaR) are a direct action group committed to opposing, disrupting, and defeating any government act that threatens democracy, equality, and civil liberties. CIDNY partners with RaR on some actions and events, particularly on health care and subway accessibility.

According to Elizabeth, “Facebook has made it so easy to find events and organizations to get involved in.” Facebook is also what brought Elizabeth to CIDNY. She joined the group a few years ago, but became more involved in the past year through a mutual friend she shared with our Executive Director, Susan Dooha.

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Group photo of advocates at Lobby Day in Albany with a multi-colored striped painting the background.

Elizabeth has taken trips to Albany with the CIDNY Action Network to lobby for the rights of people with disabilities. She finds this very fulfilling because “instead of talking about politicians, I’m actually talking to the politicians trying to affect change.” She has also gone to the Supreme Court of New York recently to fight against the MTA. Elizabeth views these lobby trips as doing her civic duty for the community. She intends to continue to work with the CIDNY Action Network to lobby Albany for the rights of the disabled and she hopes to one day lobby Congress in Washington DC. As she tells it, “it really feels like my voice matters and that is all I really want.”

Fight the Dismantling of the Affordable Care Act (ACA)

The week of March 4th, New Yorkers for Accessible Health Coverage, a project of CIDNY, submitted comments to the US Department of Labor expressing strong concerns with a proposed rule expanding Association Health Plans.

We believe that the proposed changes would negatively impact access to quality, affordable care for consumers, disrupt the individual and small business marketplace, and further strain the limited resources of state regulators. The loosely affiliated small businesses joined together as AHPs would be exempt from many of the consumer protections created by the Affordable Care Act (ACA). These include insurance standards such as Essential Health Benefits, premium rating rules, and risk pooling. As was seen in the past with AHPs, fraud, abuse, and plan solvency present potential concerns, especially as oversight and regulatory authority remains in question.

We are particularly concerned that Association Health Plans will use various practices to discriminate on the basis of health status. This will segment the market, making the ACA-compliant market, that the people we serve now enjoy, into a high-risk pool that will become unaffordable to them.

Learn more about the impact of Association Health Plans here.

Please Take This Survey about Your Medication

Do you take medication for a chronic or rare disease? Has your insurance company forced you to switch medication?

We have previously had success working with a coalition of health care advocates to pass legislation that regulates Step Therapy in New York in 2016. We are asking for your help to pass another patient-friendly bill. In this case, it relates to Non-Medical Switching, the practice of changing insurance coverage mid-plan year and ultimately forcing a patient to switch medication.

In order to pass legislation that prevents patient harm by regulating Non-Medical Switching, we need to first prove the extent of its impact to legislators. Our partners developed a survey that asks patients about their experience with this and how it has impacted their lives and also can protect hair loss problems.

We would like the survey results to be as representative of the patient population of New York as possible.

Here is the survey linkPlease complete by the end of the day on Friday, March 9th.

Tell Lawmakers to Invest in Access to Home

Our Homes, Not Nursing Homes

Free Our People!

Inaccessible housing is one of the biggest barriers for people who want to live in the community.

Unfortunately, the home modification program, Access To Home, is severely underfunded at only $1 million. This has left many parts of the state unserved, and has resulted in years long waiting lists. The Senate and Assembly need to hear from the disability community that they must address the need for home modifications!

As the State invests in programs such as Open Doors and the Olmstead Housing subsidy, which help people leave institutions or prevent unwanted and unnecessary institutionalization, it needs to provide funding for home modifications.

CIDNY is urging the legislature to include $10 million in funding for Access To Home. It helps homeowners and renters get the home modifications they need to live in the community. The Senate and Assembly are finalizing their one house budget responses, which are due out next week. We need everyone to make 4 calls today to help ensure we get this necessary funding included!

ACTION: Make the following 4 phone calls today to help ensure we have funding for Access To Home!

  • Call Senate Housing Chair, Senator Betty Little at 518-455-2811
  • Call Senate Majority Leader, Senator John J. Flanagan at 518-455-2071
  • Call Assembly Housing Chair, Assemblyman Steven Cymbrowitz at 518-455-5214
  • Call Assembly Speaker, Assemblyman Carl Heastie at 518-455-3791

Say: “I am disabled / a family member of someone with a disability and I need help making my home more accessible. There is no available funding to get this help, and without it, I can’t leave my house/leave a nursing facility. Please help me stay in my home by including $10 million for Access To Home in your one house budget response so it is available in my area and to people across New York State.”

H/T New York Association on Independent Living