The Medicare Rights Center’s Coalition to Protect the Rights of New York’s Dually Eligible (CPRNYDE) works to ensure that the needs of people with Medicare and Medicaid are at the center of policymaking efforts and that their voices are heard. One way we do this is through our Workgroup for People with Medicare and Medicaid. This workgroup is comprised of over thirty individuals across New York State, most of whom have long-term care needs and chronic health conditions.

I recently had the privilege of attending the Putting Care at the Center Conference, the inaugural conference of the National Center for Complex Health and Social Needs (National Center), along with one of our passionate and dedicated workgroup members, Ms. Hutchinson. Ms. Hutchinson and I were recipients of a grant from the National Center, and we are grateful we were able to attend the conference in Philadelphia.

During the conference, Ms. Hutchinson and I heard from true experts and had in-depth discussions about why health systems need to meet people “where they are” in order to properly provide health services. It was both invigorating and crucial to attend the conference alongside people with complex healthcare needs who wanted to have a say in how they continue to receive their healthcare services. Also in attendance was a variety of professionals (health care providers, health plan representatives, lawyers, social workers, hospital representatives, data analysts, policy analysts, and more) who were all passionate about changing the health system to better meet the needs of those who need care the most, in particular those whom the current health system has failed.

Ms. Hutchinson and I welcomed the opportunity to participate on a panel hosted by Community Catalyst. During the panel, we discussed the goals of our Workgroup for People with Medicare and Medicaid, such as the development and publication of accessible and understandable materials about New York’s Managed Long Term Care (MLTC) Plans. Ms. Hutchinson, the other workgroup members, and I believe that educational materials need to be accessible and should be created alongside those with coverage to ensure that they are as clear and helpful as possible. Ms. Hutchinson and I both spoke about how language can be a barrier to care, and how materials need to be written in a way that empowers individuals and does not leave them feeling disenfranchised, overwhelmed, and/or made powerless by their care needs.

Because of Ms. Hutchinson, my experience at the conference was more enlightening, grounding, and powerful than it would have been had we not attended together. Ms. Hutchison is an amazing advocate (you can read more about her on the Camden Coalition’s blog). We met in the summer of 2016 during a listening session I held at a community event for seniors. It was clear from the start that Ms. Hutchinson is passionate about educating people about their rights and relentless in her pursuit of solutions to her peers’ problems. Ms. Hutchinson is a true advocate for herself, having personally experienced the extent to which the health system can fail to meet patients’ needs, as well as an advocate for her friends and her community. During the conference, she kept coming back to an essential question: what can we take from our experience at the conference back to our communities to inform and improve them?

Ms. Hutchinson and I enjoyed our experience at the conference, and we are excited to continue to collaborate with the National Center on working to ensure that those with complex health and social needs are properly and effectively engaged in the development and implementation of health care models and policies. What we learned at the conference will help us as we continue to expand our workgroup and tackle group projects. [x_line style=”border-top-width: 1px;”][x_feature_box title=”Share Your Experience” title_color=”” text_color=”” graphic=”icon” graphic_size=”100px” graphic_shape=”circle” graphic_color=”#ffffff” graphic_bg_color=”#2ecc71″ align_h=”left” align_v=”top” side_graphic_spacing=”20px” max_width=”none” graphic_icon=”comment”]If you would like to share your experience with your long-term care coverage, we want to hear from you! Email ebalkan@medicarerights.org.[/x_feature_box]The Medicare Rights Center’s Coalition to Protect the Rights of New York’s Dually Eligible (CPRNYDE) tracks changes New Yorkers with Medicare and Medicaid and long-term care experience, and we would like to hear your story. CPRNYDE works with consumers directly and ensures their voices are heard by policymakers. We aim to improve enrollee’s experiences with their care plans and care managers. If you would like to partake in this work, please let us know!

If your MLTC plan doesn’t seem to be in compliance with New York State requirements or the model contract, you can also contact the Independent Consumer Advocacy Network (ICAN), at (844) 614-8800. ICAN is the New York State Ombuds program for Managed Long Term Care and provides free and confidential assistance. They have counselors who are ready to assist you with any concerns.