Opinion: New York must invest in people with disabilities

My son Jonathan is 38-years-old and living with autism. He resides in a group home and attends a day habilitation program. Like many others living with a disability, Jonathan's life is dependent on a system that is crumbling beneath our feet. For over a decade now, New York's leaders have turned a blind eye to the needs of individuals like Jonathan as nonprofit disability service providers grapple with consistent underfunding compounded by rising operational costs and a worsening Direct Support Professional workforce crisis.

Earlier this month, Jonathan and I stood before a crowd of families, advocates, and providers at the New York Disability Advocates rally in Albany. We called on our elected officials to invest in New York’s long-neglected system of supports and services by including in the state budget two very important things:

A 3.2% Cost-Of-Living-Adjustment for nonprofit providers so they can keep up with the rising costs of food, gas, and other essentials; and a Direct Support Wage Enhancement to give direct care workers a much-needed bump in pay.

This investment would stabilize the system that cares for Jonathan, and the more than 100,000 other sons and daughters that it serves.

Jonathan, like many people with disabilities, thrives on routine and consistency – but high turnover among Direct Support staff has led to a revolving door of caregivers who don’t understand the nuances of his unique needs. DSPs are highly trained essential workers who provide life-sustaining support to thousands of individuals with I/DD, yet they are paid an hourly rate just above the state minimum wage, causing annual turnover rates among Direct Support staff within New York’s nonprofit I/DD service sector to reach an alarming 30%. 

Please imagine that you have a child like Johnathan, who needs support with activities of daily living. Imagine that over time your child came to trust their support staff and that the staff came to understand the nuances of your child’s nonverbal communication, their emotional triggers, how to soothe them during stressful periods, and how to make them laugh. Now imagine that the staff leaves. They leave not due to a lack of dedication, or concern for your child, but because they aren’t earning enough to put food on their table. 

So, they leave and there is no one to take their place. Now, already overworked and underpaid colleagues have to pitch in and cover the shifts without knowing how my son’s individual needs are best met. Jonathan deserves to know that his services won’t be cut, that his program will still be around next month, and that the DSP he’s come to know and trust won’t leave for a better-paying job.

Instead, I watch as he suffers from anxiety every day when he leaves his day habilitation program and doesn’t know who will be staffing his group home that night. This is a scenario that no individual or family should have to endure, but the reality is that it has become all too common in New York.

Meanwhile, year after year, the lack of investment in supports and services for New Yorkers with disabilities, combined with ever-increasing operational costs, has the provider agencies that care for our children falling further behind. Facilities are degrading, while day programs and group homes have been cut back to bare essentials or closed entirely. For those in our community, this adds another layer of inconsistency and fear for the future on top of a faltering workforce.

I urge New York's leaders to act and invest in equity and dignity for Jonathan and for all New Yorkers with disabilities. The solution is to include both a 3.2% investment for providers to meet increasing operating costs for life-sustaining programs and services and a DSWE to ensure fair pay for DSPs and help rebuild this essential workforce in this year’s enacted state budget. During budget talks, these may seem like just numbers on a balance sheet, but they have very real consequences for my son and people like him.

I urge our elected officials to think about Jonathan as they deliberate over an investment that would merely allow nonprofit disability providers to keep up with inflation.

I want them to think about Jonathan as they consider a nominal pay increase for the people who take care of him.

I think about it every day. And every day, when I look into Jonathan's eyes, I am reminded of the urgency of this investment.

Jonathan needs you. All New Yorkers with disabilities need you.

We cannot afford to wait any longer for change. The time for action is now.

Lawrence Fein is the medical director of Orthopedic Center of Excellence at Saratoga Hospital.