The families of people with intellectual or developmental disabilities know the difficulties of navigating state bureaucracies in search of help. They’re often aren’t aware there is help, but now they have a state-appointed ombudsman to work on their behalf. Correspondent Briana Vannozzi sat down with Paul Aronsohn to discuss the new role and what he hopes to accomplish.
Vannozzi: Advocates, family members, caregivers, even, are going to learn about this role and are going to say, ‘Well, it’s about time.’
Aronsohn: Absolutely. This has been long overdue. You know, this population we’re talking about, people with intellectual and developmental disabilities and their families, it’s so hard to navigate the system as it exists. So it’s really important to have an advocate to have help out there to find their way.
Vannozzi: So what will you do as ombudsman? What does the role entail for the state?
Aronsohn: Well, the main purpose is to work with individuals with intellectual and developmental disabilities and their families to help them get the services and supports they need and deserve. So, that means a few things. That means helping them navigate the system, which can be a little bit confusing and overwhelming, to find those programs that they need. It can be to work with them to look at ways to improve the system — better communication, different programs, different policies. But, ultimately it’s about making sure that the voice of the individual and their families is heard, and it’s heard in a meaningful way, and that they’re involved in the decisions that are affecting them.
Vannozzi: You’ve had already a long work life in government, public sector, advocating on this issue. You have three siblings who have informed you about this work. Tell me about that.
Aronsohn: Yeah, so, all three of my siblings have had a mix of disabilities and medical conditions. One of my sisters, Patty, actually passed away last year. It’s really through her experience and through her life that I learned and became impassioned about disability issues.
Vannozzi: So how does that inform your work? What do you plan to focus on?
Aronsohn: Well, it informs my work because anyone who comes from a family with disability, we’ve had sort of a front-row seat so we see the struggles, the challenges, that are faced by families, so it informs your understanding better. And so you take that understanding, you take that passion, and you bring it to every situation, you know, every family that comes to us.
Vannozzi: I can tell you, I mean, I’ve done extensive reporting on the issues facing families, individuals with intellectual and developmental disabilities. What I hear from them is health care and mental health care is fractured. Since the Christie administration moved the Division of Mental Health Services to the Department of Health, at least anecdotally and through many stories that I told through them, the care is more difficult to access. Why is that and what is the rule of the ombudsman going to do to help that?
Aronsohn: Well, yeah, it is. The good news is that New Jersey provides a lot of supports and programs for folks with disabilities. The bad news is it’s so difficult to navigate.
Vannozzi: Why is it so difficult to navigate?
Aronsohn: I think it’s a combination of reasons. I think there’s so many different programs, so it can become confusing, that have different eligibility and different applications. I think there can be an improvement in terms of the way that we communicate with folks. One of these things I’ve noticed is, that again, there are these great programs in Trenton, but the folks that live in the communities throughout New Jersey aren’t aware of them. So there’s a disconnect somewhere and that’s where we aim to sort of fix. We hope to bridge that disconnect and make sure that people understand what’s available to them.
Vannozzi: What are some of the programs? NJ Able is one of the newest ones. What is that? Tell us what that is and what it will do for folks.
Aronsohn: In New Jersey, Able is based on a federal program and that allows folks to save their money. So, it allows them to put their money away, just like anyone else with or without a disability. But there is a whole slew of programs that are available — residential programs, day programs. There’s a lot of support that’s there. The key is just to help people access it.
Vannozzi: Is there enough support for the amount of individuals with these disabilities? It’s something like 22,000 in New Jersey. Is the state offering enough to reach all of the state? Not just those cities where most of the population is living.
Aronsohn: Sure. I can’t say whether we have enough right now to reach all of them, and that’s something that we need to work on. We do have a lot of programs and a lot of services, but there are gaps. I mean, for instance, for those that are called dual diagnosis, those with intellectual and developmental disabilities, as well as mental health challenges, there’s a lot of work that needs to be done in that space for those individuals. There’s a lot of work that needs to be done, I think, to sort of fill the gap between when a child with IDD becomes an adult with intellectual development [disability].
Vannozzi: That’s a huge issue. Once they age out, as we say, once they’re 21 and older, there’s so many resources in place during that age group. But once they become an adult, it gets really difficult.
Aronsohn: It becomes difficult because, I think, there’s just a lack of understanding. I think there’s an opportunity here to educate folks. Because, right, we have the children’s system of care, which provides services for kids up to 21. And then the Division of Developmental Disabilities takes over when they’re 21. There are a lot of programs and supports on both sides of that 21 age mark, but a lot of people don’t know about it. And so what we need to do is reach down into the communities, educate families better, early, before they turn 21 to make sure they are aware what they need to do to access those programs, to access those services.
Vannozzi: Part of your charter is that you’ll be issuing an annual report to the governor, to the Legislature. Quickly, if there’s a number one issue you’re going to advocate for, or to recommend, what will that be?
Aronsohn: A number one issue? Well, I’ve been doing this for ten weeks, so I’ve got a bunch of issues that I’ve been kicking around. I mean, one of them is this transition from child to an adult because, again, we know that every child with an intellectual or developmental disability is going to be an adult with an intellectual developmental disability. We know that transition is going to occur. And so to me, that is a low-hanging fruit that we need to sort of step up and fix to make it so that it is a seamless transition for those families.