by Susan Lucas, Board of Directors President at The Arc Mid-Hudson
As the parent of a daughter with intellectual and developmental disabilities (I/DD), I’ve navigated the challenges of caregiving while ensuring she has the resources to thrive. As Governor Hochul prepares her Executive Budget, she must include an investment in the I/DD service system to support families and people with disabilities.
Caring for a loved one with I/DD is a full-time commitment, requiring more than love and patience. Families must learn how to navigate complex healthcare systems, advocate for essential services, and juggle the financial, emotional, and physical demands of caregiving. These experiences are shared by family caregivers across New York who provide $39 billion in unpaid care yearly, according to AARP.
While family caregivers take on significant responsibilities, they don’t do it alone. Nonprofit provider agencies and direct support professionals (DSPs) are lifelines for many families. These organizations support over 130,000 New Yorkers with I/DD, offering programs that allow people with disabilities to live and work in their communities, and provide respite for families balancing care for their loved ones with the other responsibilities of life. DSPs are uniquely trained to address the needs of people with disabilities, fostering independence and dignity, and reassuring families that their loved ones are safe, supported, and empowered.
These services have been transformative for families like mine. My daughter lives in a group home, works in a supported employment program, and found independence thanks to the dedication of DSPs and nonprofit provider agencies. These partnerships allow caregivers to step back from being sole providers and focus on being family members. I channeled my experience as a family caregiver into being involved with The Arc New York and its local chapters for nearly 20 years, advocating for individuals with I/DD and ensuring families have the resources and support they need.
Despite their vital role, nonprofit provider agencies are chronically underfunded and understaffed, leaving families uncertain about the future of their loved one’s care. We need a solution that supports both families and providers and ensures system-wide stability. Governor Hochul must commit to increased funding for the I/DD service system, including a 7.8 percent Medicaid rate increase. This is crucial to ensure providers have the resources to sustain services, invest in training, better support families, and ensure quality care for people with disabilities.
To address the workforce crisis, New York must convene a wage commission to evaluate the roles and responsibilities of human service workers and establish fair, sustainable compensation standards.
Lastly, nonprofit provider agencies need additional funding to modernize outdated facilities. Upgrades would reduce costs, better meet New York’s climate goals, and ensure people with I/DD live and work in safe, positive environments.
As Governor Hochul finalizes her budget, the disability service system needs increased funding to address decades of underinvestment and ensure a stable care system. Together, we can create a stronger care infrastructure that values caregivers’ dedication and supports the individuals they care for.
Susan Lucas is the Board of Directors President at The Arc Mid-Hudson, the Vice President of The Arc New York’s Board of Governors, and a physical therapist who specialized in home care for more than 40 years.