NEW YORK — State Senator Gustavo Rivera, chair of the Senate Health Committee, recently joined Independence Care System (ICS) leadership and members, as well as members of the Civics League for Disability Rights (CLDR) for a roundtable discussion at ICS’ Bronx office. The focus of the meeting centered around member stories about the personal challenges and obstacles they face in getting services, their continued advocacy to fight for equipment and supports, and the recently introduced Senate Bill S4789, which would establish a specialized Health Home program to serve the needs of people with physical disabilities.  

The CLDR — an independent, volunteer-led group of New Yorkers with disabilities who advocate for themselves and their community while sharing ideas, tools, and information about how to effect change — worked to facilitate the meeting with Senator Rivera to emphasize the barriers and challenges people with disabilities repeatedly face in receiving the quality care and support they need. The CLDR has organized to work with members and disability advocates to amplify their voices to call on elected officials, the New York State Department of Health and others to work together to ensure that the needs of people with disabilities are heard and that the services they need are obtainable.   

CLDR Co-Chairs Sharifa Abu-Hamda and Marcus Johnson connected with Senator Rivera’s office to organize a meeting to reinforce the challenges and struggles the disability community faces, to call on the Senator for his support in addressing these issues, and to stress the significance of a specialized Health Home program. At the meeting, ICS and CLDR members shared their deeply personal stories with the Senator, ranging from issues receiving equipment and supplies, barriers when navigating their doctor’s appointments and a lack of accessible providers to provide services. Not one member who spoke with the Senator attested to having been able to receive a successful, accessible medical examination as a wheelchair user.  

Senator Rivera explained that he and his staff would work to bring these issues and stories to light among colleagues to push for the passage of the bill. Additionally, the following week, Senator Rivera took the floor during the New York State Senate Joint Legislative Public Hearing on the state budget. The topic was healthcare and Medicaid, and Senator Rivera delivered on his promise to ask a question about the importance of Health Home services to people with physical disabilities.

The roundtable discussion was a significant one, and one that especially highlighted the need for a specialized Health Home program. With continued reductions and eliminations in services looming, the CLDR and ICS vowed to continue working with Senator Rivera to address the issues they face, while continuing to advocate to receive the supplies and services they need to live healthy lives, independently, in their communities.

About Independence Care System (ICS)

ICS is a nonprofit organization founded in 2000 as a pioneering, innovative community of professionals dedicated to serving people who, prior to ICS, were often forced to spend their lives in institutions.

People with disabilities have turned to ICS for more than 20 years because of our expert, disability-competent staff who help them to improve their health and avoid hospitalizations, achieve goals, improve their quality of life, and be active members in the community. Our foundational pillars — health, mobility and independence — ensure for true health equity for people with disabilities so they can thrive while receiving the quality care they deserve. 

As the first and only Health Home program in New York State, we have developed a model of care designed to address the vast health disparities experienced by our members and those in underserved communities. We continue to work alongside of our members, and advocate for their specialized care, because we have seen the effects of a healthcare system that fails to address their needs. ICS offers disability-expert care coordination, educational and recreational programming that enriches members’ lives, and is a premier provider of specialized mobility assessments for wheelchair users through our comprehensive On a Roll wheelchair program.

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