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  • Healthcare Advocate

    The transition of health care and Long Term Services and Supports (LTSS) into managed care can be intimidating for people with disabilities who rely on these vital services. Depending on your individual situation, managed care companies may recognize that you have been underserved and authorize increased hours, keep your services and supports the same or cut needed hours from your plan. We have seen the same thing happen to folks in traditional fee-for-service Medicaid LTSS. People with disabilities may face difficulties in addressing their healthcare needs as well.

    The Regional Center for Independent Living (RCIL) recognizes that people with disabilities may need information, assistance and advocacy to get the healthcare, services and supports they need. Consequently, the Board has allocated some of our Independent Living funds to support managed care and health care advocacy. 

    RCIL's Healthcare Advocate is available to help consumers with all aspects of healthcare benefit planning including:

    • Assisting with Medicaid, Medicaid Long Term Care, and Medicare;
    • Explaining the differences among Managed Care plans;
    • Assisting with health plan selection and enrollment into Managed Care;
    • Obtaining home services to ensure independence;
    • Appealing healthcare denials and serving as an advocate throughout the appeal process; and
    • Representing consumers at fair hearings and advocating for the full integration, independence, and civil rights of people with disabilities. 

    People with disabilities who have benefit questions or concerns about managed care or long term services and supports can contact RCIL at (585) 442-6470.


    We have had many consumers work with our Healthcare Advocate in a variety of capacities, including finding an insurance plan that best suits their needs, fighting cuts to community-based attendant services, and advocating for medical equipment and assistive technology such as a bariatric bed, manual wheelchair or stair glide. Through their self-advocacy and collaboration with our Healthcare Advocate, consumers have secured many victories! Here are a few success stories:


    "Ann Pryor" was facing a massive reduction in her Consumer Directed Personal Assistance Services - from 168 to 94 hours per week, to be exact. This cut to her services jeopardized Ann's right to live independently in the community and put her at pisk of institutionalization. Ann immediately contacted RCIL and worked with our Healthcare Advocate to request a fair hearing (an appeal) on the plan's reduction. After developing a very strong case providing that the plan's reduction was not appropriate, Ann's Managed Care Plan decided to withdraw their reduction in order to avoid the fair hearing, thus keeping Ann's attendant services intact. Because of this successful advocacy, Ann continues to live independently in the community, where she can raise her daughter and play an active role as a Disability Rights advocate. 

    "Sarah Schwartz" has been receiving 12 hours a day of attendant services since 1991. In that time, she has developed a strong working relationship with her attendants. When she received a notice that her Managed Care Plan was leaving Monroe County, she began working with our Healthcare Advocate and found a plan that provided the same level of service she requires to live independently in the community. However, less than 24 hours before her transition, Sarah received a phone call from her new insurance plan stating the plan does not have a contract with her current home care provider and her services would be temporarily discontinued starting the very next day. This meant that Sarah would not have someone to assist with critical activities of daily living, such as getting out of bed, therefore, putting her at serious risk of hospitalization and/or institutionalization. She immediately contacted RCIL's Healthcare Advocate, who notified the New York State Department of Health (DOH) of this emergency situation. After working with DOH, in fewer than 16 hours, Sarah and the Healthcare Advocate prevailed and kept Sarah's attendant services in place. Through her tireless advocacy, Sarah has proven that when we fight for our rights we can win. 

    *These are just a few examples of how RCIL's Healthcare Advocate has assisted individuals with disabilities to maintain their independence in the community. To protect the identity of the individuals we serve at RCIL, the names used in the above success stories are completely fictitious.