By Paul Aronsohn
Let’s start with the numbers.
It is estimated that there are about 582,000 people under the age of 65 living with a disability in New Jersey. That’s a full 6.5 percent of our state population. In Bergen County alone, the number is about 43,000 or 4.6 percent of the population. And again, none of these numbers include seniors, whose likelihood of having one or more physical or cognitive disabilities is significant.
Now, let’s turn to the people behind those numbers.
People with disabilities. Their parents. Their caregivers. People whose lives are challenged on even the best days and with the best care and the most resources. Their stories are often inspirational, but also painfully difficult. Many are heartbreaking. Many involve financial hardship. All involve significant health challenges.
Now, let’s consider our state government’s response.
Although largely housed within the N.J. Department of Human Services, the disability bureaucracy is unwieldy and seemingly scattered. Navigating through its labyrinth of programs and services requires a great deal of time, energy and patience – all of which are in short supply in families already stretched thin and challenged by the disability of their loved ones. Simply stated, “the system” often fails those who need it most.
It is against this backdrop that some of us are looking to next year’s gubernatorial election as an opportunity to fix New Jersey’s increasingly confusing and endlessly frustrating disability bureaucracy.
Specifically, I have two recommendations: the appointment of a disability czar and a thorough review and reorganization of that bureaucracy.
Regarding a disability Czar, I suggest creating a senior staff position in the Governor’s front office, responsible for all-things-disability. This point-person would ensure that the disability community has a seat at policy-making tables and a voice in senior-level decisions on everything from the budget to transportation to economic development to education policy. This in-house disability advocate could also help coordinate programs and services that cut across multiple departments.
Regarding a review and reorganization, I suggest a zero-based budgeting approach that starts with a blank piece of paper and begins to ask the basic questions – What are the needs of our residents? What programs and services would address those needs? How should we organize our government to provide the right level and type of support?
My vision is that any subsequent reorganization would streamline and consolidate the disability bureaucracy, making it more practical, more user-friendly and more comprehensive. For instance, under one roof, the organizational structure could be set up along a mix of overlapping, but clearly defined populations and functional issues, including: Veterans. Children. Seniors. Physical Disabilities. Developmental Disabilities. Mental Health. Vocational. Housing. Transportation. Emergency management. Regardless, the goal would be to enhance the support available to people with disabilities – helping to meet their special needs, while helping to identify and tap into their special gifts.
Yes, this would be a big undertaking, but yes, too, it is necessary. It is time to fully acknowledge that disability is a fact of life – directly or indirectly — for most families and for the places in which we live, work, learn, worship, shop, dine, etc. It touches every demographic and every neighborhood. And it comes in all shapes and sizes.
We can’t ignore it. We can’t wish it away. Rather, we should embrace it and commit ourselves to making the very most of it. And to that end, my hope is that our next Governor would approach disability with an open mind, open eyes and an open heart – that his/her approach would be one that is rooted in a genuine commitment to people with disabilities, fueled by a determination to get it right and guided by both common-sense and compassion.
After all, fixing our disability bureaucracy is not just the smart thing to do in terms of better efficiency and effectiveness; it is also the right thing to do in terms of our moral imperative to do right by each other.
Paul Aronsohn is the Mayor of Ridgewood and a founding member of the Ridgewood Community Access Network (CAN), a disability resource and awareness committee. He also serves as a Board member for Heightened Independence and Progress, a center for Independent Living in Bergen and Hudson Counties.