- [Narrator] From your public media studios, WVIA presents Keystone Edition, a news and public affairs program that goes beyond the headlines to address issues in Northeastern and Central Pennsylvania.

This is Keystone Edition.

And now moderator, Julie Sidoni.

- Welcome to Keystone Edition.

I'm Julie Sidoni here from WVIA, and I'm so glad that you're with us.

This month, April, is Autism Awareness Month.

WVIA wanted to explore just a few of the ways that people in this community are advocating for those on the autism spectrum.

What new research or resources might be available out there, and where you can find help even if you have no idea where to start.

We have assembled a panel of experts to help kick off this discussion, and I'm really happy to introduce you to them now.

We're gonna begin with Lydia McFarlane from WVIA News.

I sort of introduced you there, but tell us a little bit about yourself, Lydia.

- Yeah, Julie, thanks for having me.

I am WVIA's health reporter.

So you know, in the past year or so, I've done a lot of stories on autism and stories in this space, so I'm really excited for tonight's program.

- Really happy to have you, thank you.

Frank, welcome tonight.

- Thank you.

Thanks for having me.

- Tell me a little bit about yourself.

- So, I'm the father of a daughter with Down Syndrome, and the Chief Executive Officer of PA Inclusive and Coffee Inclusive.

PA Inclusive is a organization that helps people with autism and intellectual disabilities find jobs, live in the community, they live in their own apartments, at home with their families, recreate and do all kinds of fun activities in the community.

A provider agency, it's called.

Coffee Inclusive is a coffee shop social enterprise that employs people with intellectual disabilities and autism, and also trains people that are in high school, students in high school for the workforce in culinary arts in preparation of being employed at Coffee Inclusive or in a business in the community.

- Wonderful, welcome, Frank.

And Roseann, it's good to have you here.

- Well thank you so much for having me.

I am a parent of my son, Hunter, who's 22 years old with autism and intellectual disability, which led me into my position at The ARC of Northeastern Pennsylvania, where I lead the advocacy department there.

And we provide free advocacy services for individuals with intellectual and developmental disability, which includes autism in seven counties in Northeastern Pennsylvania.

And I've been there almost nine years.

And you know, I strive to my best to help connect families and individuals with community resources throughout Northeastern Pennsylvania.

- It seems like two people who really know, both from a family standpoint and a professional standpoint.

So we're lucky to have your expertise tonight.

- Thank you.

- I wanna start with the, basically a definition of autism.

I know that's very basic, but maybe people don't really understand what it is.

Can someone define what autism is?

- Well, autism is a neurodevelopmental disability, and the hallmarks of that for diagnosis are communication difficulties, difficulties with socializing, and repetitive stereotypical behaviors.

And is a spectrum disorder, so people may fall on the line somewhere with different levels of severity.

So that's a general overview of autism.

- I know, Lydia, in your reporting, you have found that the rates of autism have skyrocketed.

How big are we talking really?

- Yeah, so it has really increased in the past 20 years, and that is due to, you know, advances in research, we're able to catch it early.

So a lot of children are being diagnosed reliably, sometimes in cases as young as two years old or even at 12 months old.

So you know, we're able to catch it early because of these developments in research.

So it's not necessarily that people with autism didn't exist at these rates before, it's just that it might have gone undiagnosed or unknown in the community.

- I'm looking at the statistic here, 2022, 1 in 31 children aged eight identified as being on the spectrum.

In 2000, 1 in 150.

Does your reporting bear out that it really is the awareness part of it that is the reason people are being diagnosed more, or is there something else at play?

- Yeah, I think the awareness is a big part, and a lot of, you know, physicians and pediatricians are, you know, screening all children for autism.

So it's just something that pediatricians want to catch early so that they can help families, you know, treat that and live with that diagnosis as their child grows up.

- Can you talk a little bit about some of the first signs that you noticed personally, Roseann?

- Sure.

So some of the first signs I noticed with my son, Hunter, which was when he was like maybe about one and a half, that he wasn't answering his name, he wasn't saying any words.

And another big hallmark is like that joint attention, where if you say, so you're walking down, and there's like a dog and they may look at the dog and then look at you.

He wasn't showing any of those signs.

So those were some of the red flags that I had noticed.

And then when you have other kids around the same age, you can't help but compare because that your child may be not doing the same things they're doing.

So then went to the pediatrician and they start, a lot of times they'll start with like hearing tests or some basic screenings, and then maybe refer you to like a developmental pediatrician or like a psychologist to get some further testing for autism.

And it's not a clear cut, you know, diagnosis, but you may fill out some information and if you fall in that range, they may diagnose the child with autism, which was in the case with our son who was two years old at the time.

- We saw the statistic there about how it affects boys more than girls.

Do we have any idea, we, collectively, of course, have any idea why that is?

- In my reporting, a lot of scientists say that, you know, more work needs to be done to find out, but what I saw is that it could be a genetic reason but also an awareness reason.

So we see a lot of girls that, you know, are missing that two year old mark, that their male peers are getting diagnosed at, and then they're not getting diagnosed until their teenage years or sometimes even adulthood.

So I think it's, you know, scientists say it's awareness a lot of times in boys, but there's still more work to be done to figure that out.

- Understood, Frank, that Ellie does not have, is not on the autism spectrum, but I imagine a lot of this sounds pretty familiar with figuring out what to do when you have a very young child now, and now where do we go from here?

What were some of your experiences early on?

- Well, it was diagnosed in right after birth.

So in the hospital we knew with a high, you know, probability.

But having a young child at the time with intellectual disabilities and down syndrome, you obviously then meet a lot of people that have other types of disorders, and there's a lot of disabilities out there.

So certainly autism, we've, you know, known many people over the years, and I work with them in the business that I'm in, as they get a little bit older into high school and to the adult world.

But similar, you know, and I think some of the things that happen in a very early age is just the kind of shock and awe of, my God, I have a child with a disability, and then getting to know parents of other children with disabilities and then learning that, well, maybe this isn't all that bad, you know?

'Cause we're going out and we're doing things, we're having fun and there's other people like us, and we're kind of, you know, just kind of learning about, you know, meeting other people that have older children and seeing how good they're doing.

So I think there's a lot of that in the early phases.

- We talked a little bit, Lydia, you and I, about how in many cases, people, medical professionals, support workers really are working with the parents more than they're working with the child who's just been diagnosed.

And you did an interview with a clinical social worker on this topic.

- Yeah, so that's coming soon, you guys.

We'll see from Ruby Moye Salazar, she talked a lot about how she supports families in navigating that diagnosis, especially when it comes early.

So when you get a diagnosis of, you know, a one year old or a two year old, she works with the families to give them the tools to give that child the childhood that they need and deserve as they're growing up with this diagnosis.

- All right, let's hear right now from that social worker.

- Autism diagnoses have significantly increased in the past 20 years.

Advancements in research have made it easier to diagnose autism and diagnose it early.

That's according to Ruby Moye Salazar, a clinical social worker with psychoanalytic training certification in the treatment of children from Clarks Summit.

Let's hear more from Salazar about her experience in treating children with autism and the importance of family support and navigating diagnoses.

- When it is that we can help, professionally help families to really be supported to understand how to best relate to their child and children and be a healthy family.

That can make all the difference in the world.

Children cannot grow up in worlds where they don't feel lovable.

When I start working with a child at 12 months, or you know, two years or whatever, you know, as early as I can, I'm really supporting the parents to help them help this child self-regulate, because I do not want children requiring adults to manage them.

The earliest that children can start self-regulating, the better off they are.

I think that autism's a dirty word.

You know, if they get the diagnosis, they're scared to death.

They don't understand or really know what it means, and they think it's sort of a sentence, you know, for life.

And, you know, that's the joy of my work is that I get to help them understand not so, you know?

From yesterday to today, from no diagnosis to diagnosis, guess what, it's the same child, right?

- And I saw a lot of nodding during that piece.

What were you thinking, Roseann, listening to her?

- Yeah, I think that's very true.

A couple of things resonated with me that teaching the self-regulation at a young age, and often people with disabilities in general are like over controlled and like under influence to do things.

So like at a young age, it's important to try to work with them and teach them those skills and give them choices, and give them, teach them how to adjust and go along and be able to, you know, get what they need to be in a good state.

And also that it's also disability is just part of who they are.

That's another piece that resonated with me.

Like the disability doesn't define who you are.

It's disability is part of the human condition from the beginning of time.

But it's not like, shouldn't define the individual and put limitations on their opportunities.

So really that, when she spoke of that, it really resonated with me.

- Autism is a dirty word.

I've never heard anyone say that before, but I see her point about the same kid here and the same kid the next day.

You did that interview with, so what more did you discuss there?

I think she's a pretty interesting interview because of what she just said there.

Is it, how does she support parents?

How does she start that process?

- Yeah, absolutely.

I think it really starts there with saying, listen, this is your kid pre-diagnosis and after.

So it's kind of helping parents accept that.

And she talked a lot about expectations, and how parents have expectations for what their child's life is going to be like, what their life as a parent is going to be like, and just kind of breaking down those expectations and saying, listen, you know, that perfect life that you imagined, it's not that, but that doesn't mean that you're not going to have a wonderful and beautiful relationship with your child.

So it's breaking down those expectations and saying, here's the resources you need to support your child.

- Are there different types of autism?

- I would say that it is a spectrum, and so there's people that may fall on the one end, maybe autism one they classify it as now, where you may need some support and have some differences, and then maybe all the way up to like a more severe child that's severely affected by autism, where they are not able to speak and not able to take care of themselves.

So it is a wide variety.

The diagnosis encompasses a lot of different things.

- I have a follow-up question actually to what we said earlier.

We were talking about self-regulation, and I wondered what that means to you.

If people aren't familiar with having someone with disabilities in their household, what does self-regulation mean, Frank?

- That's the first I've really heard of that.

- You heard that term before?

- Yeah.

So, I mean Ellie's 28 now, so it's been a long time since she's been a young girl.

But, I mean, I guess it's just, you know, children that have disabilities their parents often overcompensate for them.

And we've gotta provide opportunities for them to become more individualistic, to learn the same way that other children learn.

We put them in special needs classrooms, autism only classrooms and expect them to model typical peers but they're not around typical peers.

So, you know, I mean think self-regulation is probably just allowing a child to be a child and not constantly programming them, not constantly therapying them, not constantly overcompensating for them.

I mean I would think that's what, you know, that means.

- Yeah, I think part of it too is, you know, to have to be taught to understand their body and when they may need a break, or they may need to walk away from something, or they may need an additional tool or accommodation, but sometimes you don't know what you need.

So part of the special education process is maybe identifying some of those tools to teach individuals with autism how to understand what they may need before they get overwhelmed.

- I recognize that there's probably not one course of treatment here, so perhaps this is a big question.

But I'm curious if you have a child diagnosed with autism, where do you start?

What is the treatment that you start with first, or what is the current course of treatment that's recommended?

Do you have anything in your reporting or anything that you have come across in your journey?

- Well I know there's a few different models of behavioral interventions that may help with autism.

When my son was diagnosed, there was really only two providers providing what's known as ABA therapy.

And I had my son did some ABA therapy.

- [Julie] Do you know what that stands for?

Applied behavioral analysis, or intensive behavioral health supports they kind of call it now.

So you may be able to find a provider in the area that provides those types of services.

There's a number of them to do, to break tasks down into smaller steps to kind of teach them to do the things that many people may take for granted.

So that's one therapy that's often referenced for people with autism, though there's others and not everybody may believe in that structure.

Also, there's early intervention would be like a very important thing to get involved with if you have a child with autism.

So you would wanna contact the state for early intervention services, which are similar to if you had a disability like, you know, down syndrome or another type of developmental delay.

Also speech therapy or occupational therapy is another, you know, good avenue.

- And back then, your son's 22.

ABA probably wasn't covered by MA.

So you may have had to pay out of pocket, but now it is.

- Right.

I actually did some like advocating with the legislature for passage of insurance companies to cover that.

- What else is now covered that didn't used to be?

I mean I think part of the awareness, I'm not saying it's passed, but I think the awareness has most certainly grown over the past, say, 20 years at least.

- There's a couple things in the, when you get a little bit older.

When you start at age 14, the Workforce Innovation Opportunity Act that was passed, I think in '13 or or '14, it allows funding for high school students to receive more job training programs.

In the adult world when you age out of high school, there's an Intellectual Disability Waiver, and many years ago autism wasn't covered under the Intellectual Disability Waiver.

And the ID Waiver is essentially a bundled set of services that you can get.

Transportation, employment, day supports, living supports, things like that.

And so now people with autism are now included in the Intellectual Disability Waiver program as well.

So they have supports now where they wouldn't have maybe 15, 20 years ago.

- So there have been strides.

- Many.

- Yeah.

- It's good to hear at least.

I mean I know we're not nearly where we need to be, which we will get to in a moment here.

But you were talking a little bit about, I kind of was taking this chronologically.

You start as a baby, and now we're into school-aged children.

And we know that the Scranton School District is taking some steps to better serve children with disabilities.

And we're gonna take a look at what they're doing now.

- So right now, we are standing in the Former Friendship House building, and it used to be an autistic support center.

They have since sold it to the Scranton School District.

We need space.

- It's going to be refurbished now into a center for both autistic support children, and children who need some emotional support.

- What you see here used to be a call center, and by August, it'll be eight classrooms.

This required the least amount of rehabilitation or remodeling.

And for us, time is of the essence.

- We were projected in an enrollment study to be between about 87 and 8,800 students this year.

We are at 9,370.

- At this juncture, you have music teachers and art teachers on carts in hallways.

And in addition, our special ed population is growing.

And those are smaller class sizes, and those are students that have particular needs that require more space.

- Over the course of the last two years, we've opened 18 elementary autistic support classrooms, Pennsylvania, and I can't quote you the statistics, but they're very interesting statistics that we are one of the states with the highest growing autistic need in the country.

So all of this, which was kind of like the office cubicle area, will be demoed out, and this will turn into eight full classrooms.

There is an autism center here, which is gonna remain here, and they work with that birth to five population, which is wonderful because any of the Scranton students who are there will transition, we can transition them right into programming if this is what they require.

There's also going to be some sensory rooms state of the art that we're gonna put in throughout the whole thing.

If you go in here, these have kind of a classroom feel to them already.

And this area will be additional classroom space right here.

This was a large kind of loading dock warehouse area, and this will become eventually the multipurpose room, cafeteria.

You could hold your PE classes in here.

So this will all be demoed out as well.

We're really excited about this.

This is gonna be fast and furious.

- I believe you'll see demolition starting next week.

- So the initial eight classrooms, then the classrooms in the middle will be built, then eventually we're doing this, hoping everything's finished by around Christmas of 2026.

- I was reporting from my colleague, Sarah Hofius Hall, our education reporter here at WVIA News, and she is with us here in the audience to answer a few questions about what we just saw.

I think that's fascinating, Sarah.

Tell me a little bit more about what led to that decision.

- So Dr.

Keating, in the video, said they've opened 18 new autistic support classrooms in the last two years.

And they know just by the early intervention enrollment numbers that the need will be growing.

This is not just, you know, a bump, this is a trend that they're seeing.

- And so I know we saw a little bit about what's going on in that building, but tell me some of the things they're very excited to be able to offer to their students, some of what's gonna go on in that building.

- Yeah, so federal law requires school districts to provide services to students with disabilities.

And that could be something like speech therapy, physical therapy, behavioral support.

And in this center, they will be able to have all of that there for the students who need it the most.

- Where are the students now?

- So they're spread out through the district, and they know that they're going to be having more, you know, come into the district and they need the space.

- And do you have any questions about the school?

I mean I think that's a really interesting, I understand that school districts already provide those services, but it seems like Scranton is saying, we know we're gonna have an issue here.

I wonder if this is something other school districts will also look into.

- Yeah, it's happening, you know, in school districts across the region.

Just in Scranton, they have about 25% of their students in special education.

Of that 25%, I think it's about 16% have autism.

And that's doubled in the last decade.

- And did Dr.

Keating say anything about why?

- It's a lot about, you know, awareness, and you know, people are looking for the signs.

You know, doctors are more aware, parents are more aware.

- All right.

Sarah, anything else that you would like to tell us about the expansion project there at Scranton School District?

- I'm excited to see how it works.

- Thank you very much for being here tonight and for your reporting, of course.

Do you know of any other programs that are in place for school aged children, or now once we are in school age, it seems as though there are quite a few programs that kids can get involved in.

What are, if people are watching and they're wondering, what would you say?

- Well, I would say that like Sarah had mentioned, that the federal law guarantees an education for every student regardless of disability.

And part of that is that students should be educated in the least restrictive environment, so that means a segregated setting, which is necessary and needed by many districts.

It should be the last resort.

They should be with their typical peers as much as possible.

So why a setting like that is important because there is a large influx, and there are a, like a lot of, you know, cases where they may need a setting that is like a center-based program.

There also should be the opportunity to have a continuum throughout, like the regular public school as well for kids with autism.

I mean, my own child I was, and also working for The ARC, we're very big on inclusion, and giving them the supports and services they need.

My son was in regular classrooms part of the day and an autistic classrooms part of the day, but with his peers as much as as possible.

But, so I mean I understand that this is a really important aspect to have as an option.

So there should be a continuum throughout.

- Interesting you said that because now I'm wondering, are there parents who would rather that their children not be with like peers, that they would rather be in a general population classroom?

- Oh, there's definitely people that would need both or possibly be in a center-based program for a little while and then gradually move into a regular school setting.

- What were you gonna say there?

- I think there's a lot of parents that would like their children to be in fully included classrooms.

Ellie was, and she really blossomed in high school.

- And did you notice differences in her in those different setting?

- Well, yeah, they agreed for an inclusive classroom, and she was there through high school and graduated.

So, there is a group of people I think that, you know, would prefer an inclusive classroom, and can perform well in an inclusive classroom, and learned the types of things.

And I learned something, when Ellie was like one, from a woman whose daughter was at Radnor High School.

And she said, "It's not really important "that your child is in a fully included classroom "so that they'll go on to college.

"But it's important that they read the same book, "even if it's modified for her "because when they're out in the community "and they're out at the supermarket, "or they're out at the football game, "and they see the people "that they're in their same classrooms, "they have a common, you know, "commonality that they're in the classrooms with them, "that they know them, that they're friendly with them."

So I think there definitely is a case for inclusion for, you know, people as well.

- To be, right, so I understand what you're saying, that if you read "Great Expectations", and now you can talk about, just for example, and now someone else might be reading the same type of, that's what I was getting at, is how how important is it to sort of put them in the general population so that they learn from their peers, or not.

- Yeah, I mean education is not a one size fits all.

So I think it's person by person.

- Is school enough?

Is school enough if you have a child with autism, are they going to learn what they need to learn from school?

- With parents that are advocating for their needs and are staying on top of the programming and being involved, yes, because when you're in school you're entitled to education.

Like I said before, every child, regardless of disability.

Once you leave the school system, you then become eligible for services and supports.

So you may be on a waiting list, you may have to, you may not be able to access, you might not have staff, you might not have opportunities.

But while you're in the school system, you can work collaboratively with your team to get all the services such as speech therapy, occupational therapy, job coaching, and transition type services that you're entitled to, different types of programs.

So I think it's just a work in progress.

So like I mentioned before, you may need a center-based program that's very intensive when the child's younger, and then you may move to being included part of the day, and being with your typical peers, and being able to model and learn from them.

'Cause once, you know, you graduate school, there's no segregated special place anymore.

You're part of the real world, and you're entitled to have an everyday life like everyone else and have the same opportunities.

So I think when districts have a lot of different options, and they look at the individual child, not the diagnosis, it can really help you build a program that will be effective and work for your child.

- So is there a significant difference when your child is 17 versus 18, because suddenly they're an adult and they're not eligible for certain programs?

Did you find that?

- Well, high school students can remain in school until the age of 21.

- Well actually, the day before their 22nd birthday.

- Date for the 22nd birthday.

So we see children with disabilities and autism graduate somewhere between, you know, that 18 to 22 time period.

And it can happen at any time.

You know, once they are out of the high school system, then they are in the adult system.

So it could be at 18, 19, 20, 21, 22.

At that point, we need to look for what your funded sources are for support.

And there's the Office of Vocational Rehabilitation for job training, which is also available in high school, like she was mentioning.

Pre-employment transition services, as well as the school district is required by law to do job training for students starting at the age of 14 until they age out of high school.

So all that time between 14 and aging out is job development as well as educational in school.

And then once you age out of the high school system, then you're looking at, is the person with autism eligible for something like an Intellectual Disability Waiver, which would have then additional support services.

- But you said parents who are involved and are advocating for their children, do you believe there are circumstances where that is not happening?

- Yes, I mean 'cause everyone's coming to the table with, you know, different toolbox and different backgrounds and information.

I mean, part of what I do at The ARC as an advocate is we work with families and individuals and try to educate them on their rights, how they can access services, give them support.

You know, we attend IEP meetings and different program meetings and try to help the parents.

We do a lot of different presentations and bring in different speakers to help educate the families and we try to meet them where they're at.

But yeah, sometimes it becomes a difficult situation.

But you know, hopefully with, you know, tools and communication, you can resolve difficulties, and there's a lot of great people out there working with people with disability, and we try to bring everybody together.

But that does sometimes happen.

But the parent is definitely the best advocate for their child.

- Lydia, we talked a little bit about the Blue Envelope Program, and I'd love for you to explain what that is, 'cause we're kind of transitioning into, now the child is no longer a child, and out there in the world, and what can be done to help make those transitions easier?

What's the Blue Envelope Program?

- So that program gives a blue envelope to drivers that have autism.

So if they were to encounter law enforcement when they are pulled over and they might be overwhelmed by the flashing lights, or by the officer coming with a flashlight, they can hand over that envelope, and the officer will see that, you know, it says I'm a driver with autism, and it has all the steps on it for, you know, a comfortable and safe interaction between the officer and the individual.

You know, it signals to the officer that this driver's not being, you know, non-compliant.

They just might be overwhelmed and have a different, you know, reaction than, you know, a driver that doesn't have autism.

So it makes that whole interaction safer and more comfortable, and parents are really appreciative of it because you want your child with autism to be independent and have, you know that freedom, but you also worry about them just like any parent.

So I heard from parents that they are really fond of the program, knowing that, you know, if they were to get pulled over, they have that as just kind of a backup just in case.

- Well, Luzerne County is making some pretty big strides here in the Blue Envelope Program and we'd like to tell you a little bit about that now.

- I believe anybody is intimidated or somewhat scared when they're pulled over by the police.

Somebody with autism, that's heightened.

We could misunderstand something for being non-compliant when that's part of their disability.

- I sit on the State Council for Instruction, Professional Development, and we meet in Harrisburg several times throughout the year.

One of my colleagues there happened to bring forth the Blue Envelope Project from Lehigh Valley Health Network.

So I got one, I started looking at it, and when I brought them back, I made an arrangement to meet with Gina, with Officer Kotowski.

And now has it implemented in all of Luzerne County.

If you're pulled over in Dallas Township, in Wilkes-Barre, in Larksville, when the envelope is presented, those officers are aware what that envelope is about.

It's an instant heads up to a police officer with the blue envelope that, hey, you may need to use a little bit of extra time, you need to ask a couple more questions that wouldn't normally be asked, and you need to maybe turn your radio down.

- Officer Gina did bring that to our attention.

I am the Chair of the Occupational Therapy Department here at Misericordia University, and I am the faculty advisor for the Cougars for Autism Awareness.

- Our club is focused on advocating for the autism population.

And our role is more of the holding tables and events so that the community can come and pick up those envelopes, and we can educate them on what it is, why it can benefit them, and just provide that safe and inclusive space that they can ask those questions.

- As well as getting the word out to educate other people that it is something that's available to them, that can help a person with autism, but also their family members.

Because if we know anything about autism, it is not just an individual scenario, it does affect the family unit.

- If they are pulled over, there is somebody understanding and there is somebody who's willing to help them, and they have the compassion and the finesse to get them through this traffic stop.

So the envelope, it is blue, so that helps.

We can see that.

And that's an immediate heads up.

Inside of the envelope, it does ask you for your license registration insurance, because that is what a police officer asks for.

There could be some helpful information on the paper that they can fill out, such as a contact number or a caregiver.

When you are in a position where you're able to help others, you should.

And this was that opportunity, and I hope that it makes a difference, continues to make a difference.

- You know, I put this uniform on to do good.

It's very important as a mom and as a police officer to do this for my whole community.

- So I had not heard of the Blue Envelope Program until maybe last week when we first started talking about this.

But Roseann shows up and she has one in her bag.

So obviously this is something that you have been talking about at The ARC.

Tell me what your thoughts are on this.

- Yeah, we're thrilled to hear about this program, and we did know about it down at one of our other chapters like North Hampton, Lehigh County for a while down there.

And we're thrilled to have it up here.

We get a lot of parents that maybe have a young loved one with autism that wants to drive, and the parents are really petrified because what happens if they get pulled over or they get in an accident?

So now to have this as an option, it like maybe like lets them have some peace of mind and they could prepare their loved one, this is what's gonna happen, and they feel like they can, you know, let them go out on the road and feel a little bit better about it.

So we're trying to continue to share that information as well as some of the other organizations that were on the feature today.

- And we talked about Luzerne County.

Did you said that all police departments in Luzerne County are now in this initiative.

- Just this month, actually just this week, Lehigh Valley Health Network announced that it had expanded to all police departments in Luzerne County, whereas it started in Dallas Township.

- We'll have to follow up and see how that goes.

But now that we're in the world, now that we're out there driving, right, I'm curious what you have to say about how the general population can help.

You know, we've talked a lot today about parents and schools, but what can the rest of the population do to be better neighbors to someone who is on spectrum or has any sort of disability, Frank?

- Well, I think the answer is in the question, which is be a good neighbor.

Remembering that people with autism are just like you and I. They have their own wants, their own needs, their own sets of issues, their own sets of desires.

I mean, we have senior citizens that have a stroke, and are disabled.

We have people that have physical disabilities, we have people with autism.

So just remembering that they're members of our community, they're vibrant members of our community, they're a part of, you know, the fabric of who we are and, you know, just treat them like everybody else.

That's a good start.

- What about you, Roseann?

What would you, I mean, really think about specifics.

What can you, what do you think that you would love to see from people out there in the community?

- I would like to really see some more opportunities for employment for individuals with autism and developmental disabilities.

And I know like some of the programs Frank runs or is headed in that direction and doing a lot of wonderful things.

And I'd like to see even more of that.

Like businesses embrace individuals with autism often have, often, not always, but often have like a unique way of looking at things, or like excel at something and like a niche.

So developing that, and maybe, you know, embracing, you know, people with autism to work in their local businesses, and you know, there's many people need employers so, you know, give the people with autism an opportunity or a chance.

I recently just saw like an article like two days ago about could kitchen work be like, you know, a new thing for people with autism?

And there's like a program in New York City where restaurateurs are like hiring people, chefs with autism.

And my son actually works in a local restaurant doing kitchen prep, and it's just like unbelievable the skills that he's gained there that like, as a parent, I didn't know he'd be able to do.

I'm like, oh, he doesn't understand safety.

Like I'm afraid for him to be near a fire or a kitchen or, and now he completely, mom the stove's on, like you have to be careful by it.

Like he became so safe, but it's, you can't always keep them safe by protecting them.

You have to teach them how to be in those scenarios.

And I never thought he would work in a kitchen or like working in that field, but he really did.

So I mean, for employers to give options and opportunities to work with and hire people with disabilities, I'd love to see even more of that.

- So I'm thinking about all of the places where you'd be out.

You'd be at a library, at a restaurant, at a grocery store.

I would love for you to give people a sense, if they don't truly understand what it's like to live with someone who has a disability, what are some of the places that are, or maybe they don't anymore, but they used to give you a little pit in your stomach like, ugh, I don't know if I should take him or her here, or I don't know if they're going to get the proper response from this person or that person.

Do you see my point?

Like where the things that we take for granted, what are some of the places that maybe are danger zones for someone who is on the spectrum?

- Well, I have to be like to say like, when my son was younger, and he was very hyper, and not unsafe, and impulsive.

There was like probably a lot of places I didn't feel comfortable taking him at all.

And again, I always tell parents that I work with at The ARC and families in our support groups and that, like try do taking like just baby steps.

Like it may be overwhelming to take them to the grocery store even or in a parking lot 'cause they might take off, or a birthday party even like things that are typically fun for kids.

But if you just do it a little bit at a time gradually, maybe they'll get used to it and learn from it, and then you could spend more and more time there.

So now at this point, like Hunter can, he goes anywhere and does anything, and wants to go everywhere.

But it's just, they've taken those small steps and not giving up and asking for help.

Like a lot of people wanna help, they just don't know how to maybe help.

So it's okay to say like, I need help with this, or it would be all right if we sit in the back, or you know, some just ask for like a simple accommodation.

Most people are willing to do that.

- We are getting into the employment part of this and helping people have independent full lives.

And I know, Frank, that's a lot of what you're doing with Coffee Inclusive.

Tell us a little bit about how that idea got its start.

- Well, Coffee Inclusive is a social enterprise where we employ people with intellectual disabilities and autism to work in a forward facing, open to the public coffee shop, bakery, cafe style environment.

So it started, I mean, schools often do coffee carts as part of job training in high school.

And so students will go and do the coffee cart as part of their high school training experience.

And what we wanted to do is we wanted to have an open to the public environment.

So if it's a business that you wanted to have the public to be able to come in so you could teach students to work at pace.

Like if you were to walk in and order a coffee, and we give you the coffee and it's cold, you're gonna hand it back and say, you know, I want my coffee hot.

And so some businesses that we could have started would not have been open to the public, you know?

Screen printing as an example would be just in the back office environment.

So, you know, Coffee Inclusive is an opportunity for adults with disabilities to be employed in a forward-facing business.

Students to be trained at pace.

So they're learning at pace what they're gonna have to learn at pace to do if they get a job in another restaurant.

And it's an opportunity for the public to come in and to see the value that they have, to see them making the products, to see them serving them, to see them working in an environment.

And it's really a good opportunity, I think, for the public to see the value that they have so that they might hire them in their own businesses.

- It's so unclear.

Oh, I just hit my hand on that table there.

PA Inclusive is the umbrella, and Coffee Inclusive falls under that?

- Coffee Inclusive is its own non-profit.

It's kind of a subsidiary organization to PA Inclusive.

It's owned and operated by PA Inclusive, but it's its own 501(c)(3) charitable organization.

- And what else does PA Inclusive offer?

- We offer job training in high school under the OVR program, Pre-Employment Transition Services.

We offer adult employment services who help you find a job, help you job coach you if you're successful on the job.

We also offer a series of community-based supports.

We have one-on-one staff that will take you on the community if you have an ID Waiver, do your activities, go to your doctor, go do your grocery shopping, we help you find apartments under the Housing Tenancy Program.

We have a Behavior Supports Program to help you manage your behavior.

So we do a lot of things under the ID Waiver Program mainly.

And the Office of Vocational Rehabilitation.

- Anecdotally, what do you hear from your customers who stop in for coffee or a baked good?

- Well, you know, the vibe of the coffee shop is great.

I mean, I think the landlords did a great job renovating it for us, you know, so the vibe is really great.

They really enjoy seeing people with disabilities interact with them, serve them their drinks, you know, take the money at the cash register.

The whole social environment there, I think, is a really a good feel environment for people.

So I think people really come in and appreciate, you know, that they're supporting a cause, they're helping people with disabilities, but they're also enjoying becoming friendly with them.

- And you did this story, correct, Lydia?

You've been smiling about this the whole time.

What were your thoughts?

- It was my first time at Coffee Inclusive when Sarah and I went for the interviews about a week ago.

And everyone was just having a great time.

There was just so much excitement from the customers we saw walking in, from your staff and your employees.

Everyone was just so excited and it was just a very joyful environment.

The coffee was great, I got an iced tea, it was awesome.

And everyone was just very happy to be there together.

And I felt like the attitude of the employees was, I get to come to work today, not, ugh, I have to come to work today.

And I think it was just a really refreshing and great attitude to see that gives you a chance to reevaluate your own perspectives.

- Yeah, it certainly is.

Let's take a look at the inside of Coffee Inclusive.

- So Coffee Inclusive is a non-profit coffee shop and bakery that aims to create more inclusive work opportunities for people with intellectual and developmental disabilities, including autism and Down syndrome.

It was founded just over three years ago by PA Inclusive, which is a non-profit service provider for people with intellectual and developmental disabilities.

- Here since about a couple weeks after the coffee shop first opened.

We help people that have disabilities, so if anybody has like an issue or a problem doing something, we always help them out the best we can, and they can learn a lot of new things here when they work here.

- It gets busy sometimes.

I do the orders, whatever people order.

Do the dishes, then I help with the muffins and whatever they have, we do.

These are spring cookies.

- Everybody's just really friendly.

I like making different coffee drinks for customers.

- [Speaker] Yeah, isn't just the hot water.

- [DJ] Yeah.

- Work doesn't stop here.

Our goal is that the skills and experiences that both direct hire employees have and our student trainees have will translate into long-term success.

And in order for that to happen, we invite and encourage other employers, both in the food and restaurant culinary arts industries, but also across industries to rethink what people can do, and what opportunities they have within their organizations that someone who may think and process differently than what they might expect can do, and in many ways enhance what they do.

- So we've talked a little bit about the restaurant industry, the food prep and service industry.

What other industries do you think are a good idea?

What other industries would you like to see open the doors more to these types of employees?

- Well, I think to start with the idea that it's not one size fits all.

Again, I think I said that already once, but we just went through, 11 of our staff just went through a customizable employment training program where, you know, we learned techniques about how to find the tasks and the attributes and the interests of the person with a disability, and how to find and negotiate and talk to businesses about the types of things that they can do and the interests that they have so that we're not pigeonholed into really one industry.

Like what industry would it be?

Everybody with a disability has their own idea of what they wanna do.

And so we've gotta find a way to draw down on the interest level of what they have, and find unique jobs in the community that fits their interest, but also where the business has a business interest.

And so this customizable employment opportunity, as an example, is negotiating with businesses what their needs are.

And if your business has a need that you're not filling for some reason, and you can't find employees for that need, do we represent people with disabilities that might be able to fill some of that need?

And of course, they would not necessarily be full-time employees, they wouldn't necessarily be your highest paid employees, right?

So, you know, there's opportunities, I think, for us to talk to the people with disabilities about the tasks and the interests of what they can do, and talk and negotiate with businesses about what their business needs are as a way to finding unique opportunities for people with disabilities to work in businesses in all industries.

- So it's much more individualized or personalized.

- Very person-centered, very individualized.

But there has to be a business interest.

The business is there to make money, you know, so we've gotta find matches for where businesses truly see that they have a need that would enhance their business, and can we match that?

And if we can match that, then you know, the sky's the limit because there's, we did this training and we had to find 20 businesses for every little, we had a case of people that we kind of had, and it was like, this person likes this, this person likes that.

Let's find 20 businesses in each of those disciplines.

And I was even surprised at how many businesses are around here that fit those.

- [Julie] Really?

- You don't think about them.

There's a lot of hidden businesses off the main track.

There's a lot of businesses that are out there in an industry that you can go and talk to and see if they have a need.

- And your door is open I imagine if a business wants to give you a call.

That's how it works.

- Our door's open, yes.

Give us a call, stop by.

In fact stop in and have a coffee.

And have a chat with us.

- Have a chat.

You've actually brought up something that you said a little bit earlier, Roseann, about how being on a spectrum, really it's all over the map.

How people might present is all over the map.

So I guess I'll go back to the, how we can be good stewards in a community.

Is there something to look for or is there something that people in the community can do to help you, to help other parents, to help someone like Frank who is attempting to get people into the workplace?

In other words, if we're not in that environment, what can we do to help?

- Well, you could certainly have conversations with individuals with autism and their families, and see what type of support they need.

You could certainly be a friend of people with disabilities by advocating and contacting legislators, and to preserve funding for disability type programs, because a way individuals kind of can access their community is because of Medicaid waivers and the funding that needs to be maintained and actually increased in order for people to be able to access job training, and have a job coach, and get employment services, and get to be able to go out into their community.

So, you know, even if you don't personally know somebody, you can still be a friend by, you know, researching and asking questions, and you know, coming up with, you know, ideas and options to share and connect.

- Do you know of any new legislation that's out there right now?

You mentioned that you were part of legislation before.

Is there anything else bubbling that we should know about?

- Yeah, well, I mean currently if you follow the, you know, the news, I'm sure everyone does.

But there may, you know, there's always potential for programs at the federal level to be cut for education and for Medicaid, and other programs, which often people with disabilities rely on, because they can't, like you said, be, like Frank mentioned, maybe employed full time, or they may need additional services.

And you know, that's a lifeline for people.

So, maintaining what we currently have, and even trying to increase it is really important.

If you follow The ARC of United States, or ARC of Pennsylvania, they have a lot of information on legislative activity and how you can get involved just by contacting or sending an email.

That would be really helpful.

- No, that's, that's good.

That's what I was wondering.

Lydia, I know you spoke with, I mean, these are great panelists here, but you've done a lot of reporting on this.

What other organizations have you reached out to?

- So I spoke with the Autism Society of Northeastern Pennsylvania, and they offer a digital hub of resources.

So they say that you can call at any time, and they kind of do the heavy lifting.

If you're feeling overwhelmed as a parent or as a caregiver, you can call and say, I'm in need of this specific type of service.

And they can say, okay, I'm on it, and I will find that for you.

They also have that digitally, so you don't have to call in.

Just a collection of resources in the community to help families that are caring for children or family members with autism.

- That's good to know that there's something out there.

My last question, I guess, would be for all of you if you learned this in your reporting.

But let's just say hypothetically, I could give you a giant bag of money.

What do you want to see?

What would you love to see more of?

Whether that be equipment, a program, anything?

What would you love to see in this space happen in the next, say, five years?

- Well, I think it would be wonderful if we could provide some additional training and opportunities for people that work with people with disabilities because there's a really shortage of people in the fields of special education, therapy, like occupational therapy, speech therapy, direct service professionals, job coaches, you know, oftentimes they're not getting into that field and, you know, people are waiting for services and not able to access things.

So if we had enough money that we could train.

- Train the trainers.

- Train the trainers.

Yeah, exactly, and provide them a wage that they can live on and expand on, I think that would be like a great to have that extra money to do that.

- Frank, what do you say?

- Well, I could tag on that and say, if we had opportunities to have somebody and maybe multiple people just be able to spend time going out and talking to businesses about hiring people with disabilities.

It's a, you know, to do that type of work, which we do, is extremely time consuming.

And we don't have enough boots on the ground to get out there.

You know, a job is more than income.

You know, a job is a place to belong in the community.

When we go to networking events and we meet for the first time, people will say, well, what do you do?

And they're not asking me what I do in my personal life.

They're asking me what I do for my job.

And so having a job is an important part of being a member of the community.

And then it generates income, which of course, allows you to become, you know, a taxpayer and, you know, buy goods in the community, and be a part of that.

So, you know, there's, you know, there's a need for somewhere for us to just have time, and time is money to be able to go and talk to people.

And we just don't have the time.

- I have to say thank you to all of you.

Lydia, your reporting is outstanding on this, and Frank and Roseann, thank you so much for your time and your expertise.

That is all the time we have for Keystone Edition Autism Awareness and Acceptance.

We're glad you joined us for the show.

If you haven't already, check out more reporting on this topic at wvia.org from Lydia and other members of the WVIA News team.

Thank you for watching, and for all of us here at WVIA, we'll see you next time.

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