(upbeat music) - Hi everyone, Steve Adubato.

We're about to have a important and compelling conversation about families who are dealing with family members with autism or developmental disabilities, and we're joined by two experts on the topic.

First one I know really well.

Michele Adubato, the Chief Executive Officer of the North Ward Center and the founder of the Center for Autism, and Jonathan Seifried, who's Assistant Commissioner of the Division of Developmental Disabilities in the state of New Jersey.

Their respective websites will be up.

Michele and Jonathan, thank you so much for joining us.

- Thank you.

- No problem.

- Michele, you and I have had many offline con- Michele is my sister and the North Ward Center founded by our dad back in 1970, and the North Ward Center a long time underwriter of our programming.

Michele, we've had a lot of offline conversations about this.

I wanna start on this topic.

Give advice to people watching right now who in real time may be experiencing seeing a child, a teenager, someone who's dealing with someone with autism or developmental disability.

It's happening in public and you wanna do the right thing and you don't know what the heck that is.

We often look away, divert our eyes, ignore it.

Talk to us because you've been, Michele's been an expert and an advocate for many, many years for a long time.

You made a face around being an expert, but compared.

- The experts are the people we work with.

They teach us, right, Jonathan?

- Absolutely.

- You know, give advice to the rest of us.

- Okay, so there's two really pivotal moments when a family member, when someone has autism, and for a family.

The first pivotal moment is that aha moment when the, your child is diagnosed with autism, and it is a gut-retching situation, and I think that's across the board when you finally realize, and it's, they're being diagnosed, that my life is going to be different because your life is certainly different when you have a child with autism.

That's number one.

Then the child goes through, okay, you're there, you're going through the school system, and then there's that other pivotal moment when the child graduates and then they go from being in a mandatory situation for the most part to a situation in an adult service provider.

- Graduates from what?

- From whatever school system they were in, graduating in different ways, but usually graduating at 21, usually, and now they go into the adult world provider system, and that's where DDD comes in, and it is, what a change, right, Jonathan?

What a change.

- Absolutely.

- So DDD is, (Steve coughing) excuse me, the Division of Developmental Disabilities.

Jonathan, as the website comes up, and I know you and Michele have worked together and you work with organizations across this state, you and your team, as the website comes up, describe exactly what the Division of Developmental Disabilities is in the state of New Jersey and the role you have in helping family members and individuals with developmental disabilities slash autism, please.

- Certainly, and thank you for the question.

So the Division of Developmental Disabilities in New Jersey, we provide supports and services to about 28,000 adults in New Jersey, throughout the state, and those range from people living at home with their families, on their own in a supported apartment, or in a, you know, what would we term a group home license setting in New Jersey, and the services and supports we provide are pretty, run a spectrum.

We have employment and day services that occupy a person during the day to in-home supports like respite or other more consistent supports in the family home, to 20 group homes with 24 hours supervision.

- Michele, in following up what Jonathan just said, you've said, you told our producers in leading up to this program that for someone with a developmental disability, someone with autism, getting a job is important, but there's something more important than that, which is what?

- Well, I think when we look at employment, we have to look at the full spectrum perspective, meaning you have to remember that autism is a spectrum.

So just, if you've met an autistic person today, you met that person today.

That's not the same as somebody else you're gonna meet.

Autism is varied and there's so many variations in that, whether it's cognitive functioning, whether it's, you know, a higher functioning autism.

So there's a huge spectra and you know, if employment makes sense for that individual, and that's the end goal for that individual, that's what should be pursued, but employment isn't always the option, and sometimes, you know what we run, one of the reasons why I left the school system.

- Well, hold on, Michele, take a step back.

Describe the role in the school system before you.

- Okay, so I ran what we call, this is way back when, before it became popular, school to adulthood, transition from school to adulthood, and that's when I really got my education from what it's like to go from school to adulthood.

- For someone with autism.

- Yes, absolutely.

So a typical situation would be, okay, you're, let's say a person that does not have a disability.

You go to high school, maybe you go to a guidance counselor, right, and maybe you'll go to college and maybe you'll do this and maybe you do that.

That's different for someone with a disability.

So someone with a disability should be getting what we call transition services, and those services should start many years prior to graduation, and the idea is that we're transitioning our adults or students with autism into the world of this adult world, which is not an easy transition.

So I ran that for many years and one of the reasons why I left the school system is that I felt that my services were needed elsewhere, and it certainly was in the world of the adult world for people with autism, because there was little or nothing there, and you know, it, and DDD, the program that we founded, that I founded, the Center for Autism is adult services, period.

That's what we do, and.

- Let’s break those down.

- Assistant Commissioner, describe those services and then I'll come back to Michele.

- Certainly.

Well, the Division of Developmental Disabilities, we really support individuals 21 and older, but we work very closely with the school system, the Department of Children and Families as well.

So as young as age 14, someone in the school system can access through the Division of Vocational Rehabilitation Services, pre-employment transitional services and.

- Be specific.

- Oh, certainly.

Well they, as Michele also eloquently stated, autism on the spectrum.

So pre-employment, you know, transition services are on a spectrum as well.

They're catered to the individual and their abilities so they could, you know, look, you know, be more advanced, if that's the term to use, then maybe somebody with a more in-depth disability, but New Jersey since 2012 has been an employment first state, and what that means is the preferred post-education outcome is employment for individuals in New Jersey, even people with disabilities, and we're very careful on using the word post-education, because we're not saying that people with disabilities, including autism, can't go on to higher education.

Autism is a spectrum.

We have individuals who are, have a lot of abilities and don't need a lot of supervision and work just like you and I do, eight hours a day, you know, five days a week.

- I wanna be clear, if people go on the website of DDD development, excuse me, Division of Developmental Disabilities, will those services be listed?

- Absolutely.

We have two waiver programs at the division, the Supports program and the Community Care program, and both have a very similar set of services.

- I'm gonna.

- The main difference between the two is, the Community Care program offers a more residential component than the Support program.

- Go ahead, Michele.

- Steven, and, sorry Jonathan, we're Italian.

We like to interrupt 'cause like, it's what we do.

Did you see how hard that was, Steven, though?

Like, you're kind of like, but wait a minute.

This system, and it's not, you know, this is the way it works.

This system is very difficult to navigate.

You have to have organizations like the Center for Autism and support coordinators.

You cannot navigate the system on your own.

Parents cannot navigate the system on your own.

- Say you're a parent or a grandparent, which you are.

- Very difficult.

- Okay, so, okay, Michele, play this out.

- Yeah.

- And if again, you choose not to talk about it, it's your business.

- Yeah.

- But you've talked about your grandson.

- Yes, Sebastian.

- Sebastian, who is dealing with autism, who has autism.

- Yes.

- What would happen for Sebastian if you did not have, and again, forget about calling you an expert.

You don't want, that's fine, but you know how to quote, navigate the system.

If you were not in the mix, describe what his parents, the family, and he would be facing.

- I'm gonna tell you that I do have obviously extensive autism experience.

So does his mother, who's a social worker and child study team member.

So does his other grandmother.

I mean, and we have a hard time, okay.

So we're having a difficult time.

Right now, Sebastian is seven and we're fighting for more inclusive services within the public school system.

It's not easy, and, but we're, you know, continuing to fight for that.

So when I look at Sebastian, who's seven, who by the way is a great swimmer, we just, we taught him, I taught him how to swim last summer, and now he's just like, he says, "I'm a fish," and wouldn't come out of the pool on Sunday, but it's very difficult and, but when we look at his future, 'cause we always have to look at the future, Sebastian is probably someone who's got a pretty, you know, high IQ for, you know, he's got around 95 IQ.

He's, but he's got serious behaviors.

He's got serious OCD and that's impeding his ability to do better in school.

You know, the idea is that it would work where Sebastian gets those supports.

Any parent will tell you, it's not an easy approach, meaning the idea is that when an adult goes into the world of adult services, that they would get those services.

This is an entitlement program.

You don't have to get it.

- What does that mean?

- No one's gonna come and tell you like, "Hey, guess what, you can, you're, you know, "you can have these services."

- What advice do you have for parents watching right now?

- My advice is make sure that you connect, like your school system should have a transition, what we call a transition coordinator, okay and you need to be on their back, okay, when your child is 14, 15, 16.

Don't wait until they're 21 because now you're behind the eight ball.

Now you're behind, because you can actually sign up, Jonathan, I don't, sign up for services, you know, a little prior to graduation.

Okay, so get those, that ball rolling.

That's why places like the Center for Autism, they are so important because we advocate for those parents.

- Jonathan, are there other organizations, I remember Michele when her team founded the Center for Autism, I wasn't sure how many other organizations, not-for-profit organizations were similar or doing some similar kinds of things.

Is that the exception, Jonathan, from your state perspective, or are there more and more organizations like that?

- There are a plethora of organizations in New Jersey that help individuals with disabilities or autism.

- A plethora?

- Yes.

We have Autism New Jersey, the ARC of New Jersey.

They actually help us with our, one of our transition to 21 programs.

There is the Siblings Network.

It's a national- - Don't worry about the names of the organizations.

Are you saying there's enough?

Here's really where my question's coming from.

Do you believe there are enough, outside of state support, outside of what the local school system is doing, do you believe there are enough independent non-profit organizations doing what the Center for Autism does?

- No, in the context of that question, in terms of getting support, I think.

- And advocacy?

- Yeah, support and advocacy.

A lot of, as Michele, I think could attest, it's the community around you as well, and I know the North Ward Center does just amazing things in the Newark area, and I was at an event that they had a year or two ago when, met Sebastian, and it's those sorts of grassroots things that really help because it's really the community, whether it be faith-based organizations, a local chapter of the ARC, et cetera.

So I think the more interest we can get from those local organizations, 'cause that's who families trust.

They trust who they know, who they respect.

Having a state website is a wonderful thing.

We love getting information out, but we wanna make sure people are aware.

- But Michele, no one's knocking on your door saying, "We're here to help you."

- Right, and Jonathan has the point.

The point is, DDD is there, okay.

I don't think it's DDD's responsibility at this point to go.

We need, as Jonathan said, these, our non-profits that are there, we need to be better educated.

It just so happens that I do understand it because I came from it and that's again why I left, is to advocate, especially for our urban community who really always gets, you know, stuck with the worst, and there are no, there really are very, there's not too many services in the city of Newark for people with autism.

So I'm so happy that we're here.

DDD, we wouldn't be here without DDD, okay?

And I want people to understand that.

All our funding.

- You mean funding, what?

- 100%.

We would not be here if it wasn't for.

- If the state didn't support not-for-profits?

- If the state, and believe me, they, we go through much, you know, a serious licensing procedure.

We would not have our group, now going on our second, I don't even like to call it a group home, our second Hope House without DDD, okay.

- Hope House is what?

Give 30 seconds on Hope House.

Not everybody knows what it is.

- Hope House is one of the first homes for people with autism, permanent homes for young women.

We are now in the process of opening up our second home in the city of Newark, which we love, about a couple of blocks away from us, and it really, you know, and that's, I think Jonathan, that's what Jonathan wants.

You know, that's what DDD wants.

They wanna take, and by the way, DDD is tremendously supportive of us, and we thank them for that because, but- - And other non-profits.

- Absolutely, but we have to understand and be realistic to say how hard, I don't know how you take the situation with DDD, and I don't want to get it muddled, and DVR, it's, the problem is, there is a tremendous problem with trying to navigate a system that you cannot do without an ex, without people who understand.

- Michele, by the way, people go onto the Center for Autism site, I wanna be clear, you're geographically based in Newark.

Not a statewide organization, meaning statewide support and services, but what can they find out there on that website, Michele?

- What they can find out is how to navigate a system, and if you want services for your child who's over, you know, who has now graduated, you know, we're the place to be.

We're totally packed.

We've got a waiting list, but we're actually expanding within the next year because of the need.

- Jonathan, final words.

- Certainly.

Well, I'd like to add, as Michele stated, education is key here in really understanding the system.

So we have an office of Transition to Adult Life and Employment that offers to all of our 600 school districts resource days and different topic on, on various topic areas, and we also have an Office of Education on self-directed services to help educate families and individuals so they can make informed decisions.

- Jonathan, thank you.

Michele, thank you.

On the back end of this is gonna be a compelling conversation with a parent dealing directly with the challenges that Michele and Jonathan described down in Philadelphia, and he'll speak for a lot of folks.

Add on to it Michele's personal experiences as well.

Michele and Jonathan, thanks so much.

We'll continue the conversation.

- Thank you.

- Stay with us, we'll be right back.

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