>> From WXXI News.

This is Connections.

I'm Evan Dawson.

This conversation is part of our week long dialog on disability, and 2025 was a hard year for American nonprofits.

Roughly 1 in 3 lost some form of funding and charitable giving wavered given the uncertain economy that's created a challenging environment for families of children with disabilities in the greater Rochester region.

In this Dialogue on Disability discussion, we're exploring what a local nonprofit is doing to try to sustain and grow as demand grows for services.

And we're talking to parents who share personal stories.

Our guest today happen to be in both categories, working for Starbridge and being served by Starbridge in studio.

Laura Arrington is director of Training and Workforce Development at Starbridge and a parent of a child with a disability with, I think, a really interesting backstory we're going to hear in just a moment here.

It's great to have you in studio.

Thank you for being here.

>> Great to be here.

Thank you.

>> And Kara Georgi is with us, a family education specialist at Starbridge and parent of a child with a disability.

Kara, welcome.

Thanks for being with us.

>> Thanks so much for having me today, Evan.

>> So let me start by asking Laura, as the Director of Training and Workforce Development, what is Starbridge?

I mean, you serve 16,000 people, but not just right here, right?

>> Correct.

Well, Starbridge is a wonderful gem of an organization that we can serve all of New York State with advocacy, except for New York City and Long Island.

We serve around 13 counties.

We have fiscal intermediary services where where the employee of record for people who have self-direction.

We provide some employment and supportive employment services there, and we do advocacy as well.

And in addition to that, we have some residential houses.

>> What kind of demand for services have you seen and has it grown in recent years?

>> Yeah, I think with especially within two areas, we've seen an explosion of growth of our educational advocacy services as well as our fiscal intermediary service of supporting people who pursue what's called self-direction.

And that's when families sort of take charge of their budget, and they can hire their respite, and their community have people to help and support their family.

>> So across the country, nonprofits have really been challenged by a number of things.

For some who have relied on federal funding, it was a really hard year in 2025, 1 in 3 lost funding of some kind for others who simply rely often on charitable giving fundraising campaigns.

It's been uneven, and I can say that, you know, as a as an employee of a station that lost federal funding last year, this community rallied in an amazing way.

And it's going to have to continue for us.

So we're figuring out new models of just trying to sustain given the new reality.

And it's a lot asking on donors did you experience any kind of headwinds in that way?

How have things been going for you guys?

>> Sure.

That's a great question.

I think what what we know is that no matter if you're a school district, an agency, a nonprofit, you are going to have good times and you're going to have tough times.

What I know it's Starbridge is no matter what we're going through, we will always be there for our individuals.

We serve for the families and for the community, and we will continue showing up.

We are creative, we are innovative, and we will always be there, making them our priority.

>> I think Laura and Kara's story about how they came to Starbridge will be instructive for the community, because, you know, theirs is just one organization, but families of children with disabilities, you know, they may turn to a lot of different directions.

And sometimes when you are just starting out down that road, you end up kind of becoming part of a community that you didn't know much about before.

And that's a little bit of Laura's story.

So before you worked at Starbridge, you know, you found them for a reason.

Why don't you take us through the story here?

>> Great.

Yeah, I did my son was diagnosed at three with autism, and, you know, when you have that book, what to expect when you're expecting, there's no book that says what to expect when you're expecting.

And you have a child with special needs.

And we were struggling.

We were looking for supports and services.

He was going off to school.

We were scared.

We didn't know the district well at that time.

We were worried about him and I reached out to Starbridge and I said, I think I need your help.

And I worked one on one with a family education specialist.

She got me coming to a bunch of trainings and the first training I ever went to was called Developing a Vision for Your Child.

And we were supposed to talk about where you see your child today, tomorrow, a year from now, five years from now.

>> How old was your child at the time?

>> At the time?

At that time, he was five years old.

And I sat there and I had my head down and I wouldn't write anything.

And she came over and she got really close to me and she said, what's going on?

And I said, I'm struggling.

I'm struggling to dream.

For the next day.

I felt like I lost my hopes and dreams.

And she goes, dream for today.

Dream for an hour.

But I want you to dream.

And I started writing about what I wanted for John, even for the next day.

And the day after that.

And I remember going home and saying to my husband, that's where I'm going to work.

I'm going to go and work there, and I'm going to help families.

And it shouldn't be this hard.

And I want to give people hope, and I want to know that they are valued and they're seen and we hear their voice.

>> You knew that day you wanted to work.

>> I knew that day.

And I came.

I came knocking on their door and I said, hey, what do you got for me?

>> How long did they hold you off?

When did they hire you?

>> Oh, I think it was it was right about the time my son was in second grade, and I was volunteering.

Yeah.

Yeah, I was volunteering.

I'd help it.

Outreach fairs, I, I wanted to do whatever I could to give back.

It really felt like a calling.

And I think.

Kara we share similar stories of it's not a job.

It's really a calling to be there.

>> But for you, Laura, when when they're asking you to dream a day, a year, five years, ten years into the future, and you sat there and you couldn't come up with something?

Why at that moment?

Why?

Why were you kind of paralyzed?

>> I felt that his diagnosis stopped.

That I think you feel that when you have a typical child that you can go, oh, what do you want to be when you grow up?

And I felt like I needed permission from somebody to say, I want you to dream.

It is okay to say, what do you want to be?

I want my children to be healthy, happy and productive.

It looks different for each one of them because they're different people.

But I lost hope.

I lost that and they gave it back to me.

>> Now that you've been doing this for a while you mentioned your your son John.

How's he doing?

>> He's doing great.

he is he's at home with us, and we have some programs for him.

He's very musical.

He plays many instruments, has a great singing voice.

we get him out.

He loves to go on family vacations.

He loves to bowl.

he has quite the Spotify playlist, by the way.

That's great.

And when we go on vacation, we have to keep adding to it because we can only hear so many songs over and over again.

>> I hear.

>> That but yeah, he's doing great.

And we're also because of where I work, I know, and I'm aware of other supports and services like we have self-direction, we have CPAP to help and support us as a family.

After he left school, because after you leave school, you you're still going to need help and support.

>> So he's an adult now, correct.

And when he was five, when you were trying to think of what a dream for him might look like, how has that actually materialized?

How much do you now think, once you are freed up to start thinking differently and felt like, okay, I, I can dream there is going to be a future for him and it may not be what I first thought.

when we were welcoming a child.

But there's going to be a future for John now that he's in his adulthood.

How does it look?

How much would you say a lot of these dreams have materialized, or we're still working toward X, Y, or Z?

>> I think it's a combination.

What we did discover is John had a love of music, and through working with Starbridge, I realized that John was eligible for music therapy evaluation.

We got a music therapy through music therapy.

We also got in touch with other organizations Spectrum Creative Music.

We started going.

He started getting lessons, singing.

We bought him through some programs, family reimbursement.

We got him a ukulele, so we got him some things and that is really his way of expressing himself through music.

And it's what brings him joy.

So we're always looking for opportunities, taking him to school plays, getting them out into the community, hearing things regarding music is what brings them joy.

So we use that as a launching pad to other opportunities for him.

>> What do you hope his next ten years look like?

>> I hope he's healthy and I hope he's happy.

And I hope that every day he wakes up and, he loves his life.

And that's what I also want for my daughter as well.

And it's wherever John wants it to be.

>> So before I turn to Cara for her story, you're describing a lot of services that, you know, when he was five, you didn't know you needed, but you ended up needing, and you go to work for Starbridge.

This is a society where there's a lot of families who just feel like, well, I could I could never afford to get the kind of help we need.

How do you exist as an organization that tries to serve as many people as possible, when they might feel like financially, I'm not going to be able to afford this.

This is going to be out of reach.

What can you do?

>> Yeah.

Great question.

what I want them to know is you're not alone.

And that's what we know.

And we want to put them in touch with the agencies to see if we can get them the supports that they're eligible for.

So they might feel overwhelmed.

For example, family reimbursement to know some of the things that you do.

May be you may be reimbursed for.

We want to get them in touch with agencies so that we can get them set up so they can get kaamyaab and respite so that as a family, my husband and I can go out to dinner.

He's 28 years old, but he can't be left home alone.

So we need that.

We don't pay for that.

That's part of he qualifies for op.

DD Office of People with Developmental Disabilities.

So our job is a connector and we want to connect you to those services because sometimes they feel so overwhelmed and they think that they're not going to be able to get that service or that they're going to have to pay out of pocket.

And we want them to know that there may be support there, and we want to connect them to that.

>> Well, let's turn to Kara Georgi for her story.

Cara is family education specialist at Starbridge and also the parent of a child with a disability.

Cara, the floor is yours.

How did you find Starbridge.?

>> So mine is a funny story.

so I started out as a classroom teacher, and when I had my own family was more kind of a tutor in our public library and would be helping children with unique challenges and families, literally with kind of lurk in the different aisles of the books until I would finish a session and pepper me with questions.

And I had done Partners in policy making, which was a great educational opportunity for me to learn about educational law and the history and just build up my toolbox.

As a parent of how can I kind of better understand the systems that I would come up against as I was trying to raise my children because as our first child approached the one year birthday mark, there was something off and I couldn't put my finger on it and literally got to the point where I went to the pediatrician and I'm like, either tell me what's wrong and how are we going to help?

Or tell me everything is okay, and give me a letter that I can wave around at people.

And it's been quite a journey with him on kind of exploring and unpacking that.

And what I've learned on that journey is you have to understand the systems you're working with as a parent.

That's the school system.

You have to understand the medical system.

You have to understand the insurance system.

You have to understand the system that is even our community.

and the web of resources and how to navigate that.

And so because of taking partners in policymaking, I had that and I would help families with questions.

And because I had done that opportunity, Starbridge had my name and information, and there was this wonderful opportunity where Starbridge is still working with some of pre-service teachers to help them with learning about disability awareness and working with families.

And our name was one of the ones chosen for me to have another learning opportunity to potentially come in and share with those pre-service teachers of what it's like trying to navigate these systems and to help them get to know my child a little bit.

And we did that.

And that was when my son at the time was in his early elementary years, and we had such an amazing experience of being able to get some great tools to help us as parents, but more importantly, tools to help his school team because of them having that teaching background, even though I myself was a teacher, it's different when it comes to your own kids and prior to having kids, parents would tell me that I was like, I don't really understand what you mean.

And now I get it.

especially having two children.

And so as I was on that journey and did the Saint John Fisher Project, the job that I'm currently in became available, and I went to the person in charge.

I'm like, there's no way I could do that, right?

Like, I can't possibly have enough knowledge or expertise.

Like, I'm just a mom who's trying to figure this out myself.

And what if I steer someone wrong?

And like Laura said, they met me where I was at and didn't say, oh, like, you're going to be perfect, but heard me out of what were my real worries and unpack that a little bit.

And more importantly, pointed out where they saw some of my strengths and encouraged me to apply for the job.

And that was in 2015.

And I remember my interview and being so nervous and presenting and saying, I just really care.

I just really want to help.

And most importantly, I want to help the families behind me to not feel some of what I felt of being lost, feeling overwhelmed, feeling confused, and I just want to point them to solid tools and most importantly, help them to feel heard.

>> You have two kids, both with disabilities, is that right, Kara?

>> That is correct.

>> How are they doing >>?

>> my son is flying high.

super proud.

He actually is a student representative on our Cayuga Onondaga school board.

Couldn't be more proud of the journey he's been on.

and I have to say, Starbridge is part of how we got there, because I had people who told me not to give up hope.

people who said it's okay to embrace different it's okay to know that your journey is going to be one not only for my son, but for myself.

for my second child, my daughter.

I'd say we're in the thick of it right now.

Evan.

and again, if I didn't have Starbridge, I would be lost.

And I have to be honest, the thing that I cling to most.

Yes, I love our staff.

Yes, I love the tools and the training.

But our tagline is what helps me every day when I wake up?

Because our tagline for Starbridge is for the hope and the how, and I resonated it when I first took the position.

But what I do every day when I'm lost and overwhelmed and as I said, I'm in the thick of it right now.

What's one thing I can hope for for today that can be the positive?

And how am I going to get there?

And sometimes it is reaching back into the Starbridge team and getting support myself.

Sometimes it's reminding myself this is a moment where you need to take some time for you, because caregiving is hard.

there's a lot going on and I want to show up for not only my own family, but the families that we serve here at Starbridge.

>> How old is your daughter?

>> she's 13.

>> And what's the hardest part, given the feeling like you're in the thick of it?

Is it that feeling of sometimes caregiver burnout?

Is it finding the balance?

I mean, what's the hardest part right now?

>> I would say it's a combination.

it is intense caregiving at the present moment.

It is navigating multiple systems.

hers are around medical.

So there is a ton of medical complexity, which then means navigating different doctors, navigating different portals, navigating barriers with insurance.

it's navigating, just understanding a lot of technical jargon that, like Laura said, there's no book that helps you for this part of parenting.

And I would say it's the desire and the hope of just wanting to help your child to have a better day for the next day.

That's coming.

wanting to be as present and loving and compassionate in the day that we're in.

And also really just trying to figure out how can I take the time to breathe, but also adhere to all the responsibilities and demands, because she is school age?

how do I keep her caught up with school?

How do I make sure that people are aware?

But I'm not oversharing or under sharing the information?

>> Well, you know, you heard Laura talk about this moment when her son was five and trying to, to cope with the idea that I'm having a hard time coming up with dreams for the future.

And you know, you've got two kids in different situations right now in their teenage years.

Cara, do you feel like you can see a future for them?

>> 100%?

for my son, it's the brightest future I've ever seen possible.

and what I would say is it goes back to the importance of Connections.

because when you're on this road where your children are not following the typical path, you start to kind of find yourself on an island or you start isolating for multiple reasons.

And I would say for Mike, we went from being in a place like that to being in this place that is just filled with people, filled with champions.

and the future is just super bright.

every time that I think he's hit this magic mark, he just reaches for another great moment.

I would say the same is true for my, younger daughter.

even though we are in the thick of it, she's fierce.

She's stubborn.

in a good way.

And most importantly, she's determined.

and because of that, I know that her future is going to be bright.

Whatever it looks like.

but we're just wrestling with that.

It might look a little different, but different is okay.

And different might in the long run, even actually be something that's better.

>> And let me also ask you something I think related to what Laura expressed.

You know, having a son now who's 28 and, you know, in so many ways doing very well, but needs caregiving, I mean, going out to dinner means making sure that there is care.

And I think it's okay for parents to dream for their kids and also to dream for themselves.

And often a dream that a parent will have is, you know, I want my child to be prepared for the world.

Whatever they encounter, and I want them to move into adulthood and, and grab as much independence as possible.

And I think it's okay for parents to want some of their own time back, you know, because caregiving for a child without a disability is hard.

Caregiving for children with disabilities, of course, as you've described, Cara is a big challenge.

So how do you help parents in your role?

You've you're in it right now.

You're working with parents every day.

How do you help parents with kids who have disabilities?

Sort of restructure their own dreams for themselves in a way that says it is okay for you to want things for yourself, too, and time for yourself.

And we can help with that, even if it's not going to be exactly like you might have imagined it before your children came along, does that make sense?

>> It does.

and I have to say, I'm in a very fortunate place in my role with Starbridge and the fact that part of my role is doing one on one support calls with families.

The other is I have a role as part of the training team for our division.

And so there's two workshops in particular that do exactly that.

One is our attitude of Gratitude workshop.

And what I love about that is it helps us as caregivers to kind of take a moment that even when everything feels bad, negative, falling apart, it feels like there's more hurdles than there are helps.

it gives us that moment to find.

Where are those golden gems?

Where are the positives?

And build off of those?

And not only for our children, but for ourselves.

My favorite one that my team is always saying that I absolutely love is taking care of our self workshop.

And that workshop.

I'll be honest, Devin, when I first came, I was like, this ain't for me.

I know.

No, no.

Like, I can't do this.

but what that encouraged me to do was do some soul searching as to why was I feeling that way?

it gave me some time to really start looking at what was I trying to tell other people?

Because one of the things I found on my journey is I want somebody alongside me who understands and isn't trying to stuff something down and show me all the things I'm doing wrong as a parent, but points out, oh, hey, you know how you had that medical appointment for yourself and you actually kept it on the calendar?

That's taking care of yourself.

Good job for that.

And hey, you know how you, like, snuck away for that couple minutes to just have a good cry in the car because that's just what you need it today.

Good job for you for allowing yourself to feel what you need to feel.

And so that training really has equipped me with tools to help other families.

But to be honest, every time I train it, I swear it's like the stars align.

Somebody must have known that I needed the information just as much as my audience, and I take away something from it as well.

And one of the things that I'd love to share with your audience is spoon theory, because that is what's helping me right now as I'm navigating this medical complexity piece.

And what it is, is there's only so much of us to give in every day.

And so that spoon theory helps us to kind of divide out, well, how much energy is this going to take?

How much energy are am I giving to you right now, Evan?

Showing up today?

And is there a way that maybe I'm earning a spoon back, not just giving because you're giving me a space to share.

You're giving me a place where I can share my own story, but also resources.

So while I'm giving up some spoons, I'm also gaining some back.

And it helps me to recognize how am I filling up my cup, and also how am I also maybe taking and depleting?

And most importantly, am I saving a spoon for myself each day and not just giving them up to all the other people that I'm interacting with, whether it's my children, my husband, the families I'm serving, or the agency that I work for.

>> I really want to hear Laura on this in a second.

I got to say, Kara what you are describing is universal for parents.

I mean, for people, right?

I mean, what, you're the spoon theory.

Spoon theory is for all of us.

Because it really is actually a zero sum game.

The time that you spend that you choose to spend, or that you are able to spend, you know, I mean, every time I think about, you know, I could stop and grab a cup of coffee and just stretch my legs for a second, but it's like, well, if I'm going to come home and, you know, my son's howling, I feel like I should get home, you know, like.

And what you are describing, especially for parents and probably even more so for parents with kids who have disabilities, is a feeling of like, if I'm spooning out anything, for me, it feels selfish.

And that's a hard feeling to have.

That is a hard feeling to grapple with when you feel like, as a parent, I can't take time for me.

I can't go meet a friend for a drink.

I can't take a vacation, I can't, I mean, like, these things are really hard for parents who feel like I've got all these undone things on the to do list, let alone think about me for five minutes or even a day.

What do you say to parents who feel like when that spoonful is for me?

It's too selfish.

Can't do it.

>> I remind them that if their cup is completely empty, how are they going to be able to pour into all the others that are asking for them?

I also remind them that I love a good to do list and checking things off, but that to do list is always going to be there.

and so making sure that they are intentional about putting themselves on the to do list, whether that's five minutes, an hour and I encourage them to start small because initially, especially when you do have those feelings of guilt, which I think is probably why I felt the way I did with this training initially.

You do feel enormous guilt of what I should have been doing.

I could have been doing, and it's hard sometimes, even even, to be fully present in that good thing you're trying to do for you because you're still thinking about all that.

And it takes practice and it takes some dedication and time.

But I promise you, the commitment is worth it.

And so again, I tell families, start with five minutes.

we all can spare five minutes somewhere and build up from there.

And you're going to find out the payout of that five minutes is going to be worth way more than giving it up, because you said, I need a prioritize me for this one little thing.

And how I tell families to build that five minutes is to think about ten things that bring them joy, and write it down on a list.

So that way they can refer to that.

Because again, sometimes when we say joy, I start thinking about, well, okay, well, what do I do with my son that brings me joy, and my daughter and my husband and our puppy dog.

But what brings me as joy?

And so having that list reminds me of what I can do, because sometimes when we do carve out that time, we're kind of lost.

And looking around the room of what should I do with this?

>> Five minutes.

Yeah.

And so, yeah.

>> I think starting there, starting small, you can make amazing things happen.

And again, one of the other things you could always do is reach out to one of our family education specialists and talk to us because we know what it's like.

We know those feelings because chances are we have felt them in some way, shape or form ourselves.

And it's an opportunity for us to kind of relate on a personal level and build a connection and say, let's figure out how we can help support and your family on the journey that you're on.

>> All right, Kara.

>> I'm totally stealing spoon theory for future conversations.

I just I'll try to credit you if I can.

It's so good.

and I have to also say this is totally unfair to Kara, but I. Can you diagnose the psyche of the American public?

Nobody.

If we're asked to do ten things that give you joy like that, you can just take a little spoonful in your day and give this to yourself.

Nobody is going to say, well, the cup that's got Facebook and social media is great, I want more.

Why?

What are we doing here?

Why are we doing so much of that when we know it doesn't bring us?

Dopamine is not the same as joy.

We really should be thinking about where the spoonfuls of joy go anyway, I just I love it, I love it, I think it's a great metaphor.

and so Laura's been nodding right along here.

I have to say, she listens to her colleague.

So, Laura, for you here, how do you grapple with this idea that, you know, my husband and I would really like to go out to dinner, and, you know, I mean, and I love my son, and I'm going to make sure he's cared for.

But it's not selfish occasionally to say we could do a night out.

I mean, that's just for starters, right?

How do you how do you grapple with that?

>> So I heard something very recently that really has resonated, and it said, if you don't take time for your own wellness, you will be forced to take time out for your illness.

And that is really what it means.

We have to take care of ourselves.

But parenthood is riddled with guilt, right?

You come home and you.

think I mean, especially if a child with a disability.

I feel like is every moment when he was younger, does it need to be a therapy moment?

And you feel that pressure and it's looking for again?

Like Kara said, taking those trainings, talking to our family education specialists that said, give yourself some grace.

It is okay.

It's okay to go in and shut the door and watch mindless TV or relax, or to go on a date with your husband, or have someone take your child out.

And the two of us just relax it.

>> It enjoy the silence, right?

>> And the silence.

Absolutely.

But it's it's a muscle that we don't always use.

And we're so used to as families and caregivers, you're always putting your children first, but then you start to add on, I'm in the generation, I'm in the sandwich generation, and that now we're starting to take care of our parents as well.

And you, you have those days.

And I love Kara's metaphor that I don't.

It's empty.

My cup is empty, and it's talking to we'll talk to each other calling Kara up, going.

She'll she'll say, Laura, you know, you just you got to take some time out.

Take ten minutes, take five minutes.

Go for a walk.

It's okay.

And it's about giving permission.

And then finding the people in your life.

Connecting with people who look at you and go, I see you.

It is okay.

It is okay for you to.

I felt selfish, it's not selfish, it's self-care.

And it's so important because if you don't put that oxygen mask on and take care of yourself, you're not going to be able to take care of everyone else.

>> I'm late for a break, but let me ask both of our guests one more question before break, and then we're going to hit some other subjects before we're done here.

because I think we're learning a lot here.

I do think so much of what our guests have been talking about is universal for all parents, but especially for families of children with disabilities.

When you are in that moment of trying to figure out what the next year or five years or 18 years looks like, maybe you just have a diagnosis.

Maybe you're just learning.

What is the benefit, Laura, of going to people who work in the field but also are in like in the field as parents, been there, done that.

>> Yeah.

it's really about that.

We hear you and we value you, and sometimes we're that safe place to land of.

I don't want to say that I walk in all family shoes.

Right.

Because everyone's journey is so different.

But it's different when somebody can put literally their hand on you and say, I see you.

And I know this is hard and you're doing a good job, keep going.

>> Kara, do you want to jump in on that too?

>> Absolutely.

I couldn't agree more with what Laura said, but I think it's also, I think back to a family that just gifted me this last week and said that they just felt so much better after being able to talk on the phone and work through what they were thinking, and have someone that just totally understands some of the frustrations, some of the feels that they have and allows them a safe place to unpack it.

Because I think when we have our children with disabilities as much as we want inclusion and out there in the community, and it's one of the reasons I love Starbridge is because we promote that.

But very often we feel we have to walk around with masks.

we can't fully be ourselves and show the hard the challenging.

and so we have to have this kind of face up all the time.

And so having people that have not only have resources but have that compassion and allow us to show up as whole people, just makes a world of difference and allows you to show up differently so that you sometimes can just, if nothing else, take that really big deep breath and say, I'm ready for my next step.

>> We're talking to Kara Georgi Family Education Specialist at Starbridge and the parent of two children with disabilities, Laura Arrington, director of training and workforce development at Starbridge, the parent of an adult child with a disability.

And the conversation this hour is about, you know what?

What your local nonprofits are doing in this time of increased demand.

This is an organization that serves 16,000 people across the state in various places, and they're working with families who have some of the hardest questions that they didn't know they would be facing.

So on the other side of this break, we're going to kind of broaden out and talk about how they see the mission going forward.

Caregiving for children with disabilities, of course, is meaningful.

but it is nonstop, as they've been talking about.

And it can be isolating.

So we're going to continue the conversation on the other side of this break.

And our Dialogue on Disability.

I'm Evan Dawson Friday on the next Connections, there's new leadership at the Susan B Anthony National Museum and House.

We'll talk about the mission of the museum and House and honoring the legacy of Susan B Anthony in the future.

And then we're going to welcome our CEO, Chris Hastings.

There's been a lot of questions from our community about what the dissolution of the Corporation for Public Broadcasting means for PBS, NPR, and stations like ours.

We'll talk about it.

>> In today's media environment, you have a lot of power.

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>> This is Connections.

I'm Evan Dawson, so our guest from Starbridge are also parents and theirs is just one organization serving our community, serving many communities across the state hasn't been the easiest time for nonprofits, and they're navigating this in various ways, and I want them both to tell you a little bit about the idea that, yeah, we've been talking about resources, but also connection matters.

And so often what you hear, whether it's conversations about disability sometimes it's conversations about navigating poverty or other challenges.

It's knowing how to be connected in the right way and knowing how not to get kind of stuck and not aware of what you may be eligible for or what is out there at all.

So connection obviously matters.

It's the name of the show.

Laura.

How do you see the value of connection and what can Starbridge do for families?

>> Yeah.

Great question.

connection is everything we say.

Connection before content.

We need to connect to people before we can start giving them that information.

We have to start from a place of trust.

If you don't trust someone, you're not going to be able to move forward.

One of the things we like to think at Starbridge that if someone called us and said, my heat is getting turned off, my landlord is trying to kick me out of my house that we have.

We're part of an my wayfinder and we can connect them to other organizations and other resources.

So if you call us, we go, oh, we don't we wouldn't say we don't do that.

We'd say, let me connect you and we go through my wayfinder, so then we can softly hand off them to another resource because parents call us and there's all these other things that get in the way every day.

They're struggling to find daycare.

They may be struggling to pay their rent or their car payment, or they may have lost their job.

So it just keeps piling up.

And we're here to connect them with those other resources so that they can move forward.

>> Is there a most common challenge that parents are facing right now?

>> I think within education, it's probably mental health and wellness as well as anxiety.

We're seeing a lot of that with our students and our families and being able to connect families and schools to help and support.

>> Kara Georgi.

I same question for you.

So the idea of getting people connected in the right direction, what do you do for people?

>> I think for us here at Starbridge, it's really living out our values every day.

as Laura mentioned, we do a ton of collaboration, and I think that's one of the things that makes our agency so strong is the collaborative partners that we have to ensure that if we can't be the resource, we can point them to the solid resource.

I also think one of the things that we do to really build true, connection is really include that individual's voice, meaning, don't just have someone come in and have this moment of sharing with you, and you already kind of have this plan really intentionally ask them, well, what can I do for you today?

Because sometimes, to be honest, Evan, what people need in that moment is human connection of somebody who can just hear them out, not because they want a resource, not because they want to sign up for a great training, but they just want to feel heard.

So that way we can build that trust to then further build those Connections for the areas of opportunity.

And I think that's how our staff approach every day of how can we show up with integrity of we're not here to decide it for you.

We're here to work alongside you so that you can decide what that fulfilling life is, and so that you can be included in a meaningful way in the community and not feel like you have to be isolated or alone.

>> Well, both of you have mentioned a couple of things I think will be valuable for the audience to hear about.

One is educational advocacy.

The importance of of that for parents and families.

What do you mean by that?

First of all, Laura, what is educational advocacy?

>> Sure.

so for educational advocacy, it's really about students or children who are in school at the time.

we like to think that we're we're partners with families.

Exactly what Cara said.

I think sometimes when someone calls us, they're just frustrated.

They may call us because they suspect their child has a disability.

Maybe they think that the school year isn't going well.

They're getting a lot of phone calls from the school about behavior, and they give us a call and we want to talk to them and find out what's going on.

And sometimes we're the first people who've really paused to listen to them and hear their situation and talk to them about what's going on and explaining about the process.

I always say, as a parent, trust your gut.

It's always right.

So if you feel something's not right, give us a call.

We can talk to you.

We can talk through.

If they're struggling in school, we can talk to you about how to get an evaluation through your school district.

We can talk to you about a communication plan or how to prepare for a school meeting.

We have resources.

We have tools to walk you through that process and walk alongside you.

Because parents caregivers are the expert in their children, and we're there to help give them information so that they can make informed choices.

>> No.

It's interesting.

So some of the families coming to you haven't gotten a diagnosis at all yet.

And so how do the school districts do in working with you?

Once there's a process of evaluation saying, look, this family may not know for sure.

They may have suspicion that something needs to be evaluated.

Are districts open to that?

Are they pretty?

Are they pretty good with services or resources?

Once there is a diagnosis, are they pretty good with educational or adjusted plans?

What have you seen?

>> So I always think there's always more work to be done, that no matter what we can always do better.

the first thing I think is so important for families is you don't have to have a medical diagnosis to get some level of supports and services, and we want to let them know that what's available at a building level, what may be available through accommodations of a 504 or what may be available if you need more support through an IEP, an individual education program.

So I think sometimes what happens and Cara, feel free to chime in, is I think families, communication I think breaks down sometimes.

And maybe families didn't ask for something in just the right way, and the schools misunderstanding what a family is asking.

And that's where we come in and help try to bring everyone back together and say, this is what this family is asking for.

How do we move forward and break down those communication barriers?

>> Cara, do you want to jump on that?

>> Absolutely.

I think the other part of that is helping to really build the partnership between the family and the school, because so often, as Laura mentioned, when communication breaks down, chances are trust and other factors start getting impaired as well.

And then it spirals into this very heavy ball that has to be unpacked.

And so Starbridge is a resource for families to help slowly tease that apart, because what I know, being a former educator myself, is there's a ton of things that we do as school staff informally in the everyday moments when we have the students in the school.

But that doesn't always translate over to the family so that they know all those details.

And the reality is they're with our kids so much of the day.

And as families, especially when our children have disabilities, we want to know as much as we can to ensure they're having a good day.

They're being successful, they're meeting goals, they're meeting milestones, and they're headed on that trajectory up.

And so when we don't have strong communication that is fluid and there is starts to be those breakdowns, it kind of creates cracks in that.

And then it starts increasing the stress, the worry, the angst.

And then you add in just trying to understand the systems itself, because our children are growing and changing every single day.

>> Yeah.

And Cara, I mean, sometimes a diagnosis is very clear and direct and sometimes it takes some time.

And I would think that, you know, we've heard from families over the years on this program who have described the angst of feeling like, well, my child is being labeled a bad student or a problem child or something that feels like this label can get permanently affixed here if we don't get, you know, a better handle on what's actually happening here.

And can we slow down and ask questions?

Have have you seen some of that?

>> Cara I've seen it and lived it.

I think the other piece of that is because of the training that I've gone through, especially with understanding behavior intervention plans and functional behavior assessments, I've better come to understand behavior is when there's no words that you can find.

And so our children use behaviors to communicate.

And those behaviors aren't very clear.

Nine times out of ten.

And so it's the adults responsibilities around our children at those moments to unpack and try to determine what are those behaviors trying to tell us and communicate.

And I used to just kind of especially think, okay, well, behavior just means they're having a hard time.

Or maybe they're just showing up because they're frustrated and they don't like me.

And it's a personal thing with me.

But instead what I've learned is no, chances are there's something under the surface.

And we, as Laura always says, have to be a good detective to figure out what is it and how do we make a plan that will better support that student and also better support the family?

Because I think that's the other part that sometimes, again, schools just are in the stages of getting better all the time at how they communicate and what they communicate with families.

But I think sometimes they're lost to of what's too much, what's not enough?

Is this too jargony for families?

So I think there's a lot of work ahead and a lot of collaborative opportunities.

Hopefully for the school districts and Starbridge and the families going forward.

>> You want to add to that, Laura?

>> Yeah.

what we do know is that everyone wants to be successful, right?

I mean, we as human beings don't wake up and say, I hope I go into work today and get into an argument and get written up or fired, right?

We don't do that.

We want to succeed.

So if we know that to be true, we also know that children don't wake up every day and say, I want to go to school and have a tough day.

I want to go to school and and have something happen where I get suspended for five weeks or the rest of the year, and it's really about being curious what is the communication that the behavior is saying?

Are the parents getting the supports and services?

Is the student is the school getting supports and services?

Do we need to bring in a behavior specialist?

Do we need to do a functional behavior assessment and look at the meaning behind the behavior so that the student can be successful?

>> And I'm not someone who thinks, and I don't think anyone is arguing for no discipline.

I think it's a more thoughtful approach to why behaviors are happening.

And so just briefly, do you feel that schools are handling discipline appropriately?

Firmware.

It needs to be firm, thoughtful, where it needs to be thoughtful.

What do you think?

>> So I will share with you.

I've been on a board of education for 15 years and president for the past four years, and I think it's really important that a school district looks at everything very carefully and thoughtfully.

When a behavior happens, you really need to look at is it dangerous?

And could it hurt the welfare and the well-being of the other students?

And that's when you really need to look at what the discipline or the corrective action is for that student.

Are they in the right placement?

Are they getting the supports and services?

It really has to be a very thoughtful conversation, and it can't be one size fits all.

And we have to look at the appropriateness of it.

The developmental level of the student.

I mean, being suspended for five weeks and nothing changes.

And then coming back and not doing anything different doesn't make a difference, right?

>> Doesn't really serve anybody.

>> It doesn't serve anyone.

So we really when we look at suspensions, what what's going to happen during that time if the student is struggling?

Are we working and talking to families about are there outside supports and services that we need us at Starbridge and a school district?

Do we need to connect this family to to help and support the student so it doesn't happen again, because just being suspended and being away from school doesn't fix anything.

>> Kara, anything to add?

There?

>> Yeah, I think the other thing to add, Evan, would be just the importance of helping our students to feel a sense of belonging within their school community.

and a sense of connection, because as we have said numerous times throughout the conversation today, connection really drives that ability to learn, and it drives that ability to build relationships.

And so while, yes, we need to have accountability as we're moving about the school day and the school structure, we also need to ensure that we're figuring out how do we help these students to build those relationships that will help to sometimes curb some of those behaviors and some day, sometimes even give them the opportunity to feel like they're more included in kind of understanding their behavior and how it impacts the staff, the students, the school community overall, and how they might respond in a more different, appropriate way.

>> Kara, before we lose the hour, I want to give you about a minute just to offer some final thoughts for families who may be soon kind of navigating the waters that you have been navigating for a number of years now.

what do you want families to understand about what life is going to look like for them, and what is out there?

>> My first thing would be to encourage them not to give up on hope.

even when it seems very hopeless, there is going to be some glimmer somewhere.

whether it's a connection with an agency someone in your community, a friend, or even something that your child does in that moment, hold on to those they will build up and accumulate into the great hope that you have.

And I'd also really just encourage those caregivers out there, build that list of things that bring you joy.

Take those five minutes for yourself.

And also I'd encourage them to check out Starbridge website because we have a ton of great opportunities for those trainings that I mentioned.

We have an incredible conference coming up in March, and so just lots of opportunities for them to build those Connections.

>> What's the website?

Cara.

>> It's WW Starbridge.

Org and they also can call our main intake line if they'd like to talk with one of our family education specialists at 585546 1700.

>> Final thoughts from you, Laura.

>> I just want families to know that you're not alone and that there is help and that we are here for you, and we see you, and you belong in all the spaces that you show up in.

And call Starbridge if you need us.

We're happy to hear you and talk to you and we value you.

>> It's been 23 years since you had that first sit down with a 5-year-old thinking about the future.

Do you think our society is in a different place now for for how we're working with families who are in essentially in your position?

>> I do, I do.

I feel there's a lot of hope.

I think we have a lot of great agencies and supports, and there's a lot of great work doing that we're doing out there.

And but we need to keep going.

There's always more we can do.

>> This conversation is part of WXXI inclusion desk.

It's part of Dialogue on Disability week.

It's a partnership between WXXI and the Al Sigl Community of Agencies in conjunction with the Herman and Margaret Schwartz Community Series.

And I want to thank our guests, Laura Arrington, Director of Training and Workforce Development at Starbridge.

Thank you for making time for us today.

Kara Georgi Family Education Specialist.

Good luck to you.

Thank you for being with us.

Cara.

>> Thank you so much, Evan, and take care everyone.

>> And from all of us at Connections.

Thanks for watching.

Thanks for listening.

Thanks for being with us on our multiple platforms.

Wherever you're finding us, it's great to have you and we're back.

We're going to be right back with you tomorrow.

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