NEW YORK —

Members and staff from Independence Care System (ICS) and members of the Civics League for Disability Rights (CLDR) recently visited the Capitol in Albany to meet with elected officials to call for their support in opposing Governor Kathy Hochul’s proposed $125 million cuts to the Health Home program in the SFY 2024-25 state budget. The proposed cuts come in addition to $100 million in cuts in last year’s budget. Additionally, ICS and the CLDR advocated for elected officials to demand that Governor Hochul rescind proposed changes to Consumer Directed Personal Assistant Services (CDPAS), which would impact people with disabilities who use the service to hire, train and supervise their own caregivers.

As the first and only Health Home program in New York State specializing in providing disability-competent care coordination for people with disabilities, ICS supports the health, mobility, and independence of its members while ensuring health equity so they can thrive while receiving the quality care they deserve. The CLDR is an independent, volunteer-led group of New Yorkers with physical disabilities that advocates for the constitutionally-guaranteed right of people with physical disabilities to live independently in their communities and for an equitable, accessible healthcare system. The CLDR is currently incubated at ICS, where it has served as the advocacy arm of the organization since 2016.

ICS staff and members and CLDR members met with lawmakers, where they highlighted ICS’ more than 20 years of experience providing disability-competent, essential services and supports, from comprehensive wheelchair services and wound care prevention, for more than 2,000 low-income New Yorkers covered by Medicaid. They noted that additional cuts to the Health Home would significantly harm the Health Home program and jeopardize ICS’s ability to continue to provide disability-competent care coordination services for members, with many ending up in nursing homes or unable to survive.

Staff and members also highlighted the importance of the CDPAS program, a critical tool to support the lives of people with disabilities and help them remain in the community while allowing them to manage their care. Governor Hochul’s proposals requiring PAs to meet minimum training standards, as well as limits to PA hours, would undermine the fundamental principles of consumer-directed services, they said, and threaten the independence of the people with the highest care needs.

“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 quality of life, and be active and independent members in the community,” said ICS President and CEO Regina Estela. “Our foundational pillars—health, mobility and independence—ensure for true health equity for people with disabilities, the State’s most underserved population. We object to both proposals. New York State must do better to support the overall wellbeing and independence of our members, and ensure for health equity for people with disabilities through quality, accessible care. We need to work together to find solutions to preserve and stabilize services to support the health of people with disabilities and to ensure their complex health needs are met.”

“We stand united with ICS and New York healthcare providers in strongly opposing the proposed $125 million cut to the Health Home program,” said CLDR Co-Leader Sharifa Abu-Hamda. “This proposal would impede our independence and severely impact our lives. This proposal would gut the Health Home program—one that is vital to thousands of high-risk individuals, including people with physical disabilities, one of the most vulnerable populations in the State. ICS is the only organization that truly understands, and supports, our needs, and empowers us to live and thrive in our communities the way we want to. We also call on the Governor to withdraw her proposal to amend the CDPAS program—a vital program that empowers people with disabilities to secure essential care so they can live independently and safely in their communities.”

CLDR Co-Leader Marcus Johnson added: “As people living with disabilities, we fight daily to get the services we need. Routinely overlooked, our population suffers from more health conditions and dies early deaths because the healthcare system does not meet our needs. These cuts would ultimately decimate our health and quality of life, and force the ICS Health Home to close. Back in 2019, the State Department of Health closed ICS, the only Managed Long Term Care (MLTC) plan designed to meet our needs. That forced the majority of members to transition to the VNS Health MLTC and ICS to have to transition to a Health Home program.

If the ICS Health Home closes as a result of these budget cuts, this would, once again, leave our members with complex health challenges and needs with nowhere to turn for essential quality care and services. ICS ensures that members, many of whom require 12 and 24 hours of home care, have access to routine health services, accessible primary care, and care coordination to support them in achieving better health and reduce the barriers and challenges they face with receiving quality care. We must work in tandem with the governor to find long-term solutions to support the disability community.”

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 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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