More funding is needed for disability support

Everywhere we go, people stare. My daughter, Lauren, and I might just be picking up milk together at the grocery store or walking around the neighborhood, but people cannot look away. Lauren was born with a rare birth defect that impacted her face’s shape and color, her ability to process information, as well as a number of health issues.

Some of the stares are curious. Others are strangely hostile. My 40-year-old daughter takes it in a stride and shrugs, “They don’t know, Mom.” Lauren is absolutely right. They don’t know.

Insufficient government funding for disability services continues to isolate the more than 130,000 New Yorkers with intellectual and developmental disabilities (I/DD) from their typical neighbors.

As a parent and special-needs attorney, I have seen that this issue comes down to two interlocking factors — a lack of community support and funding. From special education to home- and community-based services, every year the disability community must call, write, tweet, email and downright beg legislators at all levels of government for inclusion in their budgets so people with disabilities can receive essential services at their current level of support. With annual threats for cuts, it’s exhausting to cover the same ground year after year with a net result of standing still or going backward.

Unless your life is touched by disability in some way, you probably do not know that there is a yearslong waiting list for residential placements in New York State. That there is a workforce crisis of nearly 20,000 vacancies for professionals to assist people with disabilities in completing tasks of daily living, known in the industry as direct support professionals or DSPs. That high staff turnover is resulting in $100.5 million in operational costs for agencies, impacting the provision of essential services and supports. That the unsustainability of New York’s disability supports follows a decade when the statutorily required annual cost of living adjustment (COLA) investment just wasn’t made. While the 5.4% COLA in the state's 2022-23 budget was helpful, it will not undo years of underinvestment and skyrocketing operating costs following the pandemic.

Right now, 85% of New Yorkers with I/DD rely on this system — and they need your support. Public support is what closed Willowbrook and demonstrated the efficacy of the Americans with Disabilities Act. It is what advanced Gov. Kathy Hochul’s recent signing of the Preferred Source Modernization Act expanding job opportunities for people with disabilities.

We must remind our newly elected officials that their approach to disability priorities can mean life and death for many. As these lawmakers, in the State Senate and Assembly in particular, begin setting their priorities, engage with them on whether they would support a proposed direct support wage enhancement program as part of the 2023-24 state budget to ensure agencies receive allocations to increase the hourly rate of pay for direct care staff. Ask their stance on an 8.5% COLA for disability providers to lessen financial pressures on the costs of providing services, from utilities to mandated fringe benefits.

Make no mistake, your support matters. Join us in educating these legislators on the importance of responding to these overdue investments. By standing with us, you are advancing authentic inclusion for all.

This guest essay reflects the views of Saundra M. Gumerove, president of the board of directors at AHRC Nassau and adjunct professor at the Maurice A. Deane School of Law at Hofstra University.