NEW YORK — Prominent disability rights activist, Sharifa Abu-Hamda, Co –Leader of the New York City based Civics League for Disability Rights (CLDR), was invited to participate in a national conference sponsored by the SCAN foundation, Arnold Ventures, Health Affairs, and hosted by University of Pennsylvania, Leonard Davis Institute of Health Economic to address the barriers in care faced by people with physical disabilities.

Sharifa’s presentation covered her lived experience as a New Yorker with a physical disability and highlighted the experiences of the 100-member strong coalition she leads. Their stories describe delays and denials in getting vital supplies like properly fitted wheelchairs, timely wheelchair repairs, adequate numbers of catheters to prevent urinary tract infections, and mattresses to prevent costly and dangerous pressure ulcers.

The conference is sponsored by Health Affairs, the prominent healthcare journal, and hosted by the University of Pennsylvania. People who are dually eligible for Medicaid and Medicare are a small but costly population, and as a result, policy makers continue to seek a way to meet the needs of people with disabilities in a member-centered, cost-efficient system. The conference, in the words of the planners, is designed to “deepen our understanding of peoples’ experiences, the role of health care providers, and how policymakers are working toward fully integrated care for dually eligible beneficiaries.”

“I was excited to speak to this group of leaders and policymakers to share my experiences and those of the members of the CLDR. People with disabilities want the same things as their non-disabled peers: access to the care and supplies that keep us healthy and independent in the community. At the CLDR, we firmly subscribe to the rallying call of the disability rights community, “Nothing about us, without us.” Inviting people with disabilities, like me, to discuss designing a plan of the future that will better address our needs and save money is the way to create a plan that actually works for our community.”  

We applaud the participation of Sharifa Abu-Hamda in the conference, Forging a Path Toward Integrated Care for Dually Eligible Individuals. In our 24 years of providing services to people with physical disabilities, we have learned that the best way to create a healthcare system that works is to consult with the people that live with disabilities. They are experts in their bodies and in their care. A conference like this one provides the opportunity for leaders and policymakers to hear how their policy proposals resonate with the community of people with disabilities. It is our fervent hope that by engaging with members of the disability community, we will, together with consumers, be able to build a program that provides the care the community needs while effectively managing costs and improving health outcomes,” said Independence Care System President and CEO Regina Martinez-Estela.

About the Civics League for Disability Rights (CLDR)

The CLDR is 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. The CLDR works to facilitate meetings with elected officials, to emphasize the barriers and challenges people with disabilities repeatedly face in receiving the quality care and support they need. The CLDR organizes efforts with members and disability advocates to amplify their voices, calling on elected officials, the New York State Department of Health and other stakeholders to ensure that the needs of people with disabilities are heard and that the services they need are accessible.    

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, 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 with specialized expertise in supporting people with physical disabilities, 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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