- [Narrator] Funding for this edition of One-On-One with Steve Adubato has been provided by The Healthcare Foundation of New Jersey.

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- Hi, everyone.

Steve Adubato with my colleague, Jacqui Tricarico.

Jacqui, let's set up this Night of Hope 2 event at The North Ward Center, all about autism.

- Right, yeah, it was a beautiful evening where we got to see a ton of people come together from in and around the Newark community who were all really helping to support the autism community.

And the event really focused on healthcare this time.

Many in attendance signed this healthcare pledge, which embodies the idea that healthcare for people with autism should be equitable, compassionate, and promote autism-friendly practices, which was just the huge theme of the night.

So we got to speak to some doctors, community members, nonprofit leaders and family members, all who gave us their perspective within the autism community.

- You know, again, I don't know if New Jersey has more cases or more people dealing with autism, families dealing with autism, but it seems as if there's more and more attention given to it, as there should be, and I know there's, like, this is Autism Week or.

It should be something that we're always focused on because too many people, too many families need help, need support, and that's what that night was all about.

Tee it up.

- Definitely, yeah, and, you know, we're so lucky to be at The North Ward Center, which is a place that belongs to your family, Steve, and Michele, your sister, is doing such amazing work within the autism community and really getting the word out there and supporting so many who are also nonprofit leaders within the community.

So we get to speak to her too, and we'll see all that on the back end of this.

- Full range of leaders, folks who care deeply about the autism community.

This is Night of Hope 2.

Steve Adubato, Jacqui Tricarico.

Let's take a look.

- Uplifting Music - We're here for a really important event tonight.

It's called The Night of Hope 2.

Describe it for us.

- Wow.

Night of Hope.

Night of Hope 1 was huge.

And we did that about seven years ago and we changed policy.

We changed the stars to many people with autism changing the way funding comes down for people with autism on the state level with the statewide transition plan.

So when we thought of what we should do it was immediately clear to me and Suzanne Buchanan that it needed to be healthcare.

Okay?

So Night of Hope 2 is a celebration also because here's the thing about hope.

Hope needs to be a verb.

We can't just stand around and sit around and say, oh I hope something's gonna happen.

We have to make something happen.

So you hear the music, you hear the crowd.

We also wanna bring energy to this.

Okay?

And celebrate our community because it's a very difficult there's a lot of difficult things that people with autism and their families have to deal with and so one night, let's come together.

Let's come together and say we are together.

This is a big night because?

- This is an amazing night, because it gives us an opportunity to raise expectations about what's possible for people with autism.

And they've experienced so many healthcare disparities for decades, and tonight we wanna shine a light on those disparities, and we wanna offer solutions.

- Talk about some of those disparities.

- So the disparities we say occur really at three levels, the individual, the provider, and the systems.

At the individual level, you have the symptoms of autism, difficulty communicating, sensory differences, behavioral challenges, not being able to understand medical procedures or why they might need to take a medicine or follow through with a procedure.

At the provider level, many don't have formal training in developmental disabilities.

They're under informed, they're sometimes uncomfortable, and candidly, sometimes they're downright unwilling to make the accommodations that their patients need, again, because they don't know, right?

And then at the systemic level, we need more autistic voices in healthcare decision making.

- What does that mean, autistic voices?

- So autistic voices means taking the lived experience of someone with autism and including that into how you run your practice and how you deliver healthcare to make sure that it's delivered in ways that are a match for what they need and what they can follow through on, 'cause ultimately, your health is a partnership between you and your healthcare provider, and if you can't follow through on their recommendations, then why even interact, right?

You're not gonna get better if you don't understand it.

If the recommendations of the medication doesn't speak to you, you really have to do a better job, you know, communicating with your provider.

So we need more autistic voices, both those who have average intellectual ability, and also representing those who have profound intellectual disability to make sure that we're respecting their dignity throughout the entire process.

So many healthcare providers are saying they're not getting the proper training or giving the proper tools to have that knowledge.

How can we make that into just a system-wide approach across all healthcare sectors?

- Education and training for medical providers is already so robust and they have so much to learn but it needs to be part of their education and training just like any other thing that they're working on.

And I think that doing it at an education level when they're med students, when they're nursing students, is probably the best time because they're not set in their own practices or ways yet, they're learning new things, and so they can learn those new ways of interacting with patients with autism at the same time.

- And what's on the horizon?

What's the biggest thing you're working on right now leading the healthcare initiative at Autism New Jersey?

- So right now, tonight we're gonna be very excited to launch our consortium, our Autism New Jersey Healthcare Consortium, which we're really excited about because I think a much higher level collaborative approach to change is what's needed.

So we'll be bringing together healthcare leaders, autism professionals, other leaders and funders, and trade associations to work together, to really accelerate the progress that we need to see.

there's gonna be an announcement tonight.

There's a consortium being put together and you and your team are a part of that.

Why does that matter so much?

- It matters because it's a team approach for healthcare as it is, and I think that resources need to be unified in order to improve the access, and make sure that we can improve healthcare over the lifespan of our patients, not just in pediatrics or just in geriatrics.

It needs to be across the lifespan.

- It'’s the luck of the draw.

Sometimes you go into the emergency department, which doctor, which nurse, which medical professional you're dealing with, as opposed to having a standard of care and best practices that are practiced consistently, if not perfectly.

- So, this is exactly why we're excited to be part of a medical school, because we need everyone who touches any patient to be able to deliver care in the way they need to receive it, but most especially people with special healthcare needs, especially those with autism and on the spectrum, and right now, that isn't a true factor.

If you ask a lot of our medical students if they've ever learned about autism in their whole curriculum, they'll tell you no.

So it's unfortunate, but with this consortium and having healthcare systems be a part of it, it becomes part of the curriculum, and then you don't have to go to a special doctor to receive care.

You should go to your neighborhood doctor and receive care.

- For a hospital like yours, in the heart of Newark, and the heart of the inner city, if you will, what are some of the unique challenges that you face in trying to serve and care for patients and their families, patients with special needs?

- Well, so right off the bat, in an inner city, we have transportation challenges.

So families with special needs children have an arsenal of things that they need, whether it's assistive devices, whether it's the wheelchair, whatever it is, it's one added complexity.

So transportation makes it a largely planned event that's complicated.

The second thing is that families are also dealing with the socioeconomic issues that come with inner cities.

And when you add the stressors of a child that has needs to socioeconomic, there's more stressors in the family.

And it makes every little step so much more complicated.

What are we doing for dinner?

How do we get to grandma's house?

Who's coming over?

Like every stressor gets magnified.

So much so, that when something serious is happening, you're almost dulled to the reality, 'cause everything else has been so stressful.

I mean, the complexities are enormous.

- What I'm curious about is this, with all the challenges that you just described and others, how do you create the degree of consistency with physicians, nurses, other clinical professionals on the frontline, when dealing with patients with autism, special needs?

- Well, one of the things we try to do at both University Hospital and the New Jersey Medical School is share the information and try to create opportunities for people to do the same thing.

So one good way to do that is anytime a professional, it could be a teacher, it could be a doctor, interacts with a kid that they suspect may have autism, it would be a lot easier if we all worked from the same tool.

We asked the same questions of the parents, we made the same observations.

Because then the feedback allows us to have an organized response.

So at New Jersey Medical School, we're pushing hard to have universal common tools that we're working with locally here.

- Is that best practices?

- Absolutely, there's no question.

Best practices are always about having organized care in a way that's logical and is meaningful at the local level.

Now you are the New Jersey Ombudsman.

There are ombudsmans for different things, for different categories of needs in the state.

The specific area where you are the ombudsman is?

- I'm the New Jersey Ombudsman for individuals with intellectual or developmental disabilities and their families.

- Break that down.

What does that really mean, Paul?

- That means that we, my office, we serve as a resource for individuals, children as well as adults, with intellectual or developmental disabilities and their families.

That could be autism, cerebral palsy, Down's syndrome, any of the lifelong disabilities.

- So the state clearly has a role here.

- Absolutely.

- Is it multiple state agencies?

- So our office, we're (indistinct) of the Treasury Department.

It's a position that was created five years ago.

Born outta the recognition that while there are a lot of resources in New Jersey for children as well as adults, there's a lot of families that sort of have trouble navigating the system and finding their way through it.

And so our job is to be a resource for them to help them get the services and supports that they need and deserve.

- How are you tied to this event.

- Yeah, I was invited by Autism NJ.

We've had a partnership with them since the the pandemic, partnering with them to provide vaccines to those who have developmental disabilities.

And for those who are struggling with access to care.

- Why has that been or why was it so challenging?

- Those with developmental disabilities really need accommodation and they need access to care.

These are the folks who really, frankly, are most vulnerable in our communities, and they should have the Yellow Brick Road to care, but they don't.

And it took a partnership with Autism NJ and our federally qualified health centers to to set up a program.

One that was took their disabilities into account, ones that made accommodations for sensory issues.

And we put a program together that delivered vaccines to hundreds of people.

- So that's during COVID that happens.

What did we learn from that, Chris, that helps us move forward and continue to provide services at that level?

- Well, we learned that it wasn't just vaccines that was an issue.

It was access just to the very basic healthcare needs, primary care medicine, dental care, behavioral health, and barriers to the vaccine, identified barriers to just care that you and I are able to enjoy we- - And sometimes take for granted.

- We do, and we do take it for granted.

So working and partnering with Autism NJ and so many other healthcare organizations, we're looking to create a space that has cultural competencies, that has sensory competencies, that recognize some of the barriers to care, breaks down those barriers and gives those folks who need it the most the care that they deserve.

You are a mother of Nassan and advocate for children with autism.

Tell us about Nassan first.

- Well, Nassan is my amazing man child.

He's 18 years old.

He's on the autism spectrum.

He's non-verbal and he is mine.

(both laughing) - And he really led you to creating Nassan's Place.

Describe your organization to us.

- Right, he was the inspiration for Nassan's Place which is a 501C3 nonprofit organization helping to enrich and make a difference in the lives of children and families affected by autism in and around underserved inner city communities.

- Great, 10 years strong.

- We just celebrated our 10 year last year so we're going into our 11th year, yes.

- So being a mother but also being a non-profit leader in this realm, describe some of the biggest challenges that you see people with autism facing on a daily basis.

- Well, one of the biggest challenges and I call it kind of the invisible challenge is the providers for these children.

The parents who don't get the appropriate resources that they need within their own community.

That's why it was important for me to bring resources into our community so that we have them so that families, parents, those caregivers can be taken care of.

'Cause one thing I realized through this journey called autism, if you don't take care of yourself as a caregiver or parent, you can't take care of the child.

- Tonight's event, how important is it to continue to bring people together, the community leaders, the parents, the legislative leaders in events like this and in a hope to really keep spreading that education and awareness?

- I think it's very important.

What people need to understand, these children are amazing, they're awesome.

They want the same things as atypical children and they need to be seen and heard.

So often parents have left their children in the house.

They didn't wanna bring them out for the mere fact they didn't want the stigma, the stares.

'Cause some of our children's behavior can be challenging, but our children are to be celebrated.

They are to be seen.

And how do we do it?

We create opportunities, but we can't create those opportunities without the support of our local politicians, our state, federal, and even our community partners.

It's so very important and so necessary.

And that I think has been one of our true blessings through Nassan's place to get the support of all of the community and beyond, so.

- You're here tonight at the Night of Hope 2.

And your son, Sebastian, does have autism and he is part of the North Ward Center community, - Yeah.

- as are you.

Can you talk about Sebastian for us?

- So, Sebastian is our baby.

He's six years old.

He was diagnosed on the spectrum at the age of two.

He has taught us so much.

Just with living with a child that has a disability.

He's our joy and I don't know, he's just... - He's amazing.

(laughs) - He's amazing.

- Yeah.

Too many things to say about him.

- I said I've heard about him for so many years now and I finally got to meet him in person tonight.

And how did you having Sebastian, your family having Sebastian change your perspective about the work that you're doing in schools with children with disabilities?

- I've been in the field in the schools for about 12 years and I've always worked with children that have learning disabilities, especially children that are on the spectrum.

So, when we had Sebastian, I'm sitting on the other side, both sides of the table.

- Right.

- As a parent with a child with special needs and also as a district employee representing the needs of other students in the school district.

So, he's taught us a lot and just kind of advocating on both sides.

- Looking from both sides like you are, can you then give us some information or just what you really perceive as some of the most important things that we need to be doing as a community, as a state to better support families with children with autism and children with autism as well?

- Just acceptance.

Just really adapting to them, not the reverse.

It's learning from what they need, what they bring to the table, and just educating everyone.

Staff, students, teaching kindness, just accepting that there's other people with different needs, disabilities, different personalities.

That's basically like what I'm always kind of preaching to my students, to my staff is just we have to adapt to our students, not the other way around.

- Describe Hope House for us.

It's been up and running for two years now, right?

- Yes, Hope House is a home for four young ladies with autism.

We help them with their daily activities, medicals, food shopping.

We assist them with everything they need help with.

- And they're full-time living there.

- Full-time.

- How many residents are we talking about?

- Four, ok. You've had over 12 years working with individuals with disabilities, and your twins have autism, they're five years old.

Talk about becoming a mother to two children, to amazing twins who are special needs, and how that's impacted the work that you've been doing.

- I saw the signs.

So, you know, I, you know, I took me to the doctor, they were diagnosed.

It hit home a little different.

But you're like, you know what?

I knew what I had to do, and my love for them wasn't going to change.

So it actually made me go harder at work, because I know how families will want their children being taken care of, but I know how I want mine to be taken care of.

- Tonight's event, how important is it, in terms of just bringing more awareness to the needs of the autism community?

- It's very important, but a lot of people don't know how much help is out there.

They really don't know.

So this is really great that people are coming, and seeing, and getting the help that they need.

My daughter Maddie, she's 14 she's on the autism spectrum.

I feel like we've been living with autism for as long as she's been alive, and it's really been kind of a journey for me to becoming an advocate.

I'm a parent obviously, but recently I've become a little bit more active in the autism community.

I had heard about Autism New Jersey a couple of years ago and connected with a mutual friend who was on the board and said that I was really interested in helping in whatever way I could.

And a few months later, here I am.

- Her journey and your journey as her parent, has it been an easy road?

Talk a little bit about that and how it's so important to support the families, the caregivers, the parents, of people who have children that have autism.

I think... - Exactly.

There are so many doctors and nurses and specialists and healthcare providers out there but they're not all talking to one another.

And we had so many people that we were going to for various things, and my husband and I like to... We wish that we had sort of a quarterback, you know, behind us, kind of in the center of it all directing us, and that's really what's needed.

- Professional.

- Exactly, like someone who is there from the get-go and can kind of acknowledge what is going on and really help us.

Because I think if we had known earlier, not that we didn't do everything for her, but if we had known earlier, I think that journey would've been so much different for us and so much easier for us as parents.

Talk about your connection now with Autism New Jersey.

What led your career path to now being a board member there?

- Joining Autism New Jersey, that was really why I wanted to join the board to really learn, 'cause I obviously as a parent have all that life experience, but I really wanted to make more of an impact and not just bring that experience to help them, but also to learn how to advocate and they have a huge advocacy arm, I think that's, you know, it's more than 50 years of experience that they have, and I'm just really interested in working alongside them and doing all the great work that they're doing, especially for tonight, The Night of Hope, and healthcare is such an important issue.

Just a few years ago, and even a little bit before that, your career kind of shifted and changed.

You became a salon owner, it's called Your Kind of Cuts, and it really gears to the needs of the community and children with disabilities.

Can you describe it for us?

- The shop is primarily for, like you said, special needs and sensory families.

We've been growing ever since we opened on day one.

I can't believe the need for this in this industry.

It's overwhelming, to be honest with you, how many people are suffering with this situation trying to get haircuts for their families.

But, you know, my staff and I at the shop we are highly motivated with the challenge of making sure families feel comfortable, they have a safe place to come, and, you know, every day's a challenge, every child's a challenge, every week we learn something new about another child or another family so.

- Well, it sounds like a big learning experience.

What are some of the things that you have learned along the way that you're spreading to your colleagues?

- Just the different sensory issues that kids have.

Some it's, you know, they need to see everything, some kids need to touch everything, some kids need to see and touch everything, right?

And some kids we coax a little bit, you know, probably a little manipulation in there, but, you know, it's all justified at the end.

You know, we reward 'em with, you know, some toys or some fidget spinners or something just to kind of- - Keeping 'em busy and comfortable.

- It's different for every child, but that's part of the challenge.

That's the challenge.

I love coming to work every day 'cause you never know what you're gonna get into.

- A learning experience, and what does it feel for you to be able to give these children that positive experience with you and your salon?

- I don't particularly judge myself the way other people see me, right?

I mean, people have told me that I go way outta my way to do what I do.

I don't think so, I think it's just me being me.

This is what I do during the day.

But there's some kids out there that you can see the terror and the fear of their face, and it's very personally gratifying and satisfying when maybe not after the first, or second, third haircut, but eventually they come back with a smile.

They can't wait to see me.

To me, that's a good day on the job when they can come back and be stress free and actually want to come see me.

So that's very rewarding.

- I'm so pleased to be joined now by Aaron Thompson, a fantastic artist, and Richard Gaines, an artist as well, who is the mentor to Aaron.

You'll see some of the artwork behind us.

That's all Aaron's beautiful artwork.

Aaron, you made the picture of Buddy, right, Buddy the dog?

- Yes.

What made you wanna make a picture of Buddy?

Did you wanna just show that Buddy was a really amazing dog here at The North Ward Center?

- Yes, he's a good dog.

- [Jacqui] Such a good dog, right?

And today's his birthday.

- Yes.

- [Jacqui] Celebrating Buddy's first birthday, which is really cool too.

- Yeah.

- And I've seen so many people, your family members, your mom, walk up and look at all your amazing artwork.

How does it feel to have everybody loving the work that you've done?

- I'm very great.

- That's awesome, Aaron.

And Richard, you've been a mentor of Aaron's for a really long time, and you said the pandemic brought you back here to continue to mentor Aaron and help him with his artwork.

Describe that for us.

- That's right.

I was actually Aaron's teacher.

I've known Aaron since he was seven years old, and I used to work at Regional Day School.

And I knew that Aaron had a lot of talent, and someone from Center of Autism asked me to come and work with Aaron on this event we're at right now.

- And what has that done for you personally?

- It really moved me.

I mean, to see Aaron go from a young student to a professional artist, it's just an amazing feeling.

- And just talk a little bit about the power of art.

Especially for people with disabilities and people like Aaron who have autism, what is that power there with being able to express themselves through art?

- Well, you said it yourself.

There's a lot of expression that comes from them.

There's a lot in them that they wanted to put down on paper.

And also working with the materials, you know, the tactical side of it, they were able to feel the textures and put it down on paper and create marvelous work.

- And we see that here tonight.

Aaron, are you gonna keep being an artist, keep making these beautiful pictures for us all to see?

- Yes.

- Yeah?

Well, we can't wait to see more and more of your artwork.

Thank you both so much for talking with me.

- Thank you.

- You're welcome.

- [Jacqui] It was so nice to meet you.

- Thank you.

- Thank you, thanks.

- So tonight is about hope.

Tonight is about a sea change because we need to change some things.

We need to change some things about health care.

And we learned a lot from COVID, we learned a lot, that you can't just have a stranger come and give a needle to a person with autism and think that that's going to work.

Did anyone experience that?

You know, and that's a part of it.

You can't just do that.

People with autism and families with autism deserve and need a different way of thinking when it comes to health care.

Alright, that's right!

And we are here to change that.

- [Narrator] One-On-One with Steve Adubato has been a production of the Caucus Educational Corporation.

Funding has been provided by The Healthcare Foundation of New Jersey.

Delta Dental of New Jersey.

The Fidelco Group.

The Turrell Fund, supporting Reimagine Childcare.

Valley Bank.

PSEG Foundation.

PSE&G, Robert Wood Johnson Foundation.

And by PSC.

Promotional support provided by NJ.Com.

And by ROI-NJ.

- At the Turrell Fund, We know childcare creates transformative early learning experiences for young children, and helps families succeed.

Childcare is essential for the economy, driving financial growth and sustainability across all sectors.

The Turrell Fund envisions a New Jersey in which every infant and toddler has access to high quality, affordable childcare In order to grow, develop and thrive.

Our children are our future.

For more information, visit TurrellFund.org.