From WXXI news.

This is connections.

I'm Evan Dawson.

Our connection this hour was made when a two year old boy was struggling to walk and talk.

When his peers would play, he would roll into a ball on the floor.

When other children would talk, he would mostly not respond.

And while the boy was almost certainly frustrated, he had a smile that could have gone on a toothpaste commercial.

The boy was being cared for by an organization called Rochester Speech and Hearing, their director of education and clinical services recently told my colleague Noelle Evans that this child was at a fork in the road of his life.

Without early intervention services, he could be permanently affected, but instead he got the help you need.

He was diagnosed with cerebral palsy.

Months later, the staff was beaming, watching the boy walk down the hall on his own.

It does not always go that way.

In fact, New York State's early intervention service model is by many measures in a state of crisis.

According to early intervention providers who track the data.

New York state is currently ranked dead last in the country for timely delivery of E.I.

services.

Federal and state data show that roughly half of eligible children are not receiving their needed services on time.

And here's what's so strange about this issue.

So many problems get bogged down in political polarization.

But time and time again, at least on this program, we talk to Republicans, we talk to Democrats, and they pretty much agree on this.

They want more funding, more support, more dollars, more qualified people working, not leaving.

This hour, we're going to try to work through why that hasn't really happened yet.

If you listen to Noel Evans story, you might have found it really enraging how everyone I diagnosis is the problem here, and yet it's not solved.

We're going to talk about what has to happen for things to change.

But for the moment, here's how the team from the Children's Agenda puts it.

Providers are being severely underpaid, and that is contributing to a shortage in workers and services.

As a result, wait times are so long that some kids age out before ever receiving early intervention care or eye care.

This conversation is part of our dialog on Disability Week, a partnership between Wcai and the Seagull community of agencies, in conjunction with the Herman and Margaret Schwartz Community Series.

Let me welcome my guest.

Welcome back to the program.

Bridget Hurley, chief program officer for the Children's Agenda.

Thank you for.

Thank you.

Sitting next to Bridget is Lynn Modena, and Lynn is a local parent and an advocate for early intervention.

Thank you for being here, Lynn.

Thank you.

And welcome to Allison Augustine, who is a speech language pathologist with Bright Start Pediatric Services.

Thank you for taking the time to be here.

Thank you.

I don't know, should we just rerack the conversation from a year ago?

Bridget, save a lot of time.

I mean, I don't mean to be flippant, but I'm confused here.

I cannot tell you how many Republicans and Democrats we talked to, and they disagree on everything except for pretty much this.

So what's going on?

Absolutely.

It's a puzzle to us as well as, you know, we've been working on this for 5 or 6 years and, sort of make, two steps forward, one step back.

it does appear to be a concern of all of the legislators.

There's been unanimous approval of budget bills that fund, early intervention, and it provide an increase in funding.

but when it comes to actually providing the funds, it's not happening.

There was a rate increase for providers.

that was in this year's budget, and it was supposed to be enacted on April 1st.

It has not happened yet.

April 1st of 2024.

Last year, 2024.

Yeah, yeah.

Exactly right.

So there seems to be agreement but not the will to make this happen.

so comparing to last year, unfortunately things have gotten worse.

Okay.

So I feel like there's that meme where it's like we're all looking for the guy that did this and like, I mean, if the governor's budget doesn't reflect what the legislators say they want, I don't know where else to blame.

Might be the wrong word.

I'm not trying to play a blame game, but I'm trying to understand.

And and does it start with the governor's office?

It does start with the governor's office, and it sort of ends with the governor's office.

And she is just not taking the action to direct her division of the budget to, for example, implement this 5% rate rate increase, which again, was supposed to be enacted on April 1st, has not hit the ground yet, and it is in her power to make that happen.

and it it hasn't.

is it because her office, her budget office says, look, things are tight.

We've got to cut here.

We've got to cut there.

We've got to shave some off to save to get this budget done.

And this always ends up on the cutting room floor.

I don't know, to be honest.

the division of the budget, we've met with them, but they're not forthcoming in terms of their decisions around this.

and, the, the it's a mystery to us why, given all of the savings that would accrue to the state if all the children who were eligible for early intervention received their services.

There's plenty of data from other states that prove that it saves money in the long run, even in the short run.

In terms of preschool, special education.

And it's not happening.

Has the children's agenda met directly with the governor on this?

We have met with the governor's staff, okay.

And they tell you she gets it, that they're very concerned about early intervention, and they very much want children to get services.

And, you're putting me on the spot.

I don't know what to tell you, except that there's a lot of concern about it.

And.

But when the money needs to be, spent, it's not.

And it's the kids who are paying the price.

I mean, if I tell you that I'm trying to.

I really want to cut my sugar.

And every day, every meal I eat is fun dip and Milky Ways.

I don't think I'm following through on what I told you in a meeting.

Right, right.

That's what I feel every time, every year I talk to you and it just feels like the same story.

So and again, I'm not an advocate.

I'm just trying to understand where we are, because what's going to happen is the governor state of the state is tomorrow, which you'll hear special live coverage.

Then the governor's budget comes out, and then the legislature has to work through the budget, and we're going to interview members of the state legislature on this program, and we're going to talk to Republicans and Democrats, and they're going to tell us they agree.

Right.

And then the question is, does anything happen?

Right.

And so so that's been a years long thing.

What do you expect to happen this week and end this month with the budget from the governor this time around?

I expect that there will be no new investments in the early intervention system.

from the governor, either in her state of the state or her budget.

What we hope is that at least the rate increase that they passed last year will be the 5%, the 5%, and it's 5% sufficient for where we need to go.

I mean, it's way lower than when I hear people say, we need we're going to talk to our guest in a moment about that.

But it's a start, right?

It's a start and it's a start in the right direction.

Okay.

So at the very least, you're hoping, let's get what we were supposed to get last year.

Right.

And then we'll see what happens.

The other thing that they promised last year to be implemented this year is a rate modifier that would provide an increase for providers in areas where there is severe shortages of providers and children.

There are there are counties with no early intervention providers.

So we're looking for that in this coming budget that, that, that, provision will be funded this year in the budget we're going to re endeavor.

I don't know if that's the word re endeavor.

We're going to re endeavor to get Governor Hochul on this program.

And we'll talk to her about that, because there's a million things that that are on a governor's plate.

Absolutely.

And I'm not saying the job is easy.

And I'm not saying the construction of a budget is easy.

What I am saying is, year after year, if you tell communities we get it, we've got you.

And then the budget comes out and it's not there.

You ought to explain why.

That's all.

That's all I'm saying.

It's also a violation of federal law.

I just want to say, oh, well, there's that part to the data.

The data on the New York state being the 50th is actually from their federal report, a federal monitoring report.

Okay.

So before I turn to your co-panelists here, can can we just hit this point because I was reading last night, some notes for this program.

And as dire as things obviously are with Early Intervention, I was kind of surprised to see dead last in the country.

I'm not used to seeing New York State dead last in anything.

So can you give us a little more detail on what that means?

Sure.

So every year, the New York state, every state early intervention program supplies data to the federal government and a series of metrics and on the metric for timely delivery of services, which means once the child is diagnosed as needing early intervention, there's a plan put together.

At the end of that plan, there should be services provided within 30 days.

And that's where New York State is falling far behind and is 50th in the nation.

If you want to include territories where 56th.

Wow.

listeners, if you want to join the conversations, we talked about early intervention services in New York State priorities and what comes next here.

It's eight, four, 4295 talk.

It's toll free 8442958255263 WXXI.

If you're calling from Rochester.

2639994 email the program connections at Zorg.

Make a comment in our YouTube channel and Sky news wherever you want to find us.

We'll try to include some of your feedback.

Let me turn to a provider.

And Allison Augustine is a speech language pathologist with Bright Start Pediatric Services.

Been there for how long, Allison?

Eight years.

Okay.

And tell.

Tell listeners what it is that you do.

So I go in to family's homes after they've been identified as needing, a speech pathologist.

and I work with the families and assess what's going on and how to help their child so that maybe that means several things.

They may need assistive technology, they may need, language therapy.

So because they're not communicating, I actually do a lot involved with, pediatric feeding and swallowing.

And so kids that aren't eating.

and another thing that I do, which is really important, I think, is get the other providers in if you have a sensory issue and you need occupational therapy, if there's, you know, a red flag for autism, do we need to make a referral?

and so it's really important to put all those pieces together and work with the family that way.

how young is the youngest that you work with?

Six months.

Six months?

Yes.

And up to roughly what age?

About three.

Okay.

How significant is the need right now?

Very significant.

it's a lot of the babies, that are, you know, around six months.

Sometimes when I pick them up, they have complex medical needs.

a lot of prematurity, leading to some issues and needing therapy.

and there's not enough.

I mean, there's not enough providers to get all the services that we need for each child.

So I mentioned off the top the story that our my colleague Noelle Evans was reporting on and just, you know, one of countless stories when my services are accessed, that, again, it doesn't always go perfectly.

Every child is an individual, but you can see real progress.

You can see real difference at a time that we'll talk to Bridget in a moment.

I know you've said gotta realize how crucial this window of time is in development.

Can you talk to me a little bit about some of what you have seen?

You know, from a little bit of the start to finish, though, where things progressed and what you think this kind of intervention does?

Sure.

if you pick the, the child up early enough, you can get and work with families.

But our goal is to teach the families how to work with their children.

The goal is that we get the families to do the work and involve them, and that's where we see the biggest difference.

ideally, we do want to see them going into a preschool program, maybe with no support, maybe with varying levels of support.

It depends.

and then go successfully into the school system.

How significant a lifelong possible impact is it for kids to not get an access to II like this?

I think it would be detrimental if they did not get early intervention services.

I mean, this is where the brain is, you know, growing and making, you know, all the synapsis that it needs to grow.

I mean, I just can't even fathom some kids that wouldn't get services until the school district picks them up.

Maybe when they're five.

I think that that is very late.

Bridget, can you talk a little bit about the importance of this window of time in a child's life?

Sure.

So 85% of brain development happens between ages.

Birth to three.

There's a million new neurons created every second during that time period.

So I don't know if there's a way to exaggerate the importance.

It is that important.

And kids who get these services early can, you know, we we talk about there's lots of children at age, you know, two or so where there's a slight speech delay, a concern maybe.

And so they have, you know, maybe 6 or 8 months of eye services.

But we're also talking about, you know, the feeding issues.

I talked to a provider who was working with a family, young, young couple, brand new baby, born premature.

Got sent home and she said normally you would have an eye feeding specialist in that home within a day.

This this couple waited weeks to figure out how to handle a feeding tube with a newborn baby.

You know, so there's there's huge benefits for everyone.

And then there are some children where it's literally a matter of health.

Well, if not, you know, I mean, to maybe frame this in the lens of, children with advantages as opposed to, you know, a crisis or disadvantage.

So, I mean, I just remember my boy being, you know, when he was a few years old and it's like, well, you know, if you want him to start learning a second language, like, this is the time because, like, it's easier for the brain to kind of process and receive and, and I've, I've never thought about that.

But even even the challenge of learning language later in life and any adult listening right now who's tried to learn a language, you know, in your 20s, 30s, 40s, 50s, you know, wow, this is bouncing right off me.

something's going on in the brain that, you know, and in my very LabVIEW, it's a word.

My brain is hardening.

It's not.

It's not receiving, but it's kind of what we're looking at, right?

I mean, it's a it's an amazing time of what kids can and can't do, but, they don't get that help, right?

They it's the time when they can respond to therapies.

Most fully.

so that's why it makes a really big difference when they get these services early.

So, Allison, how do you see this political fight over the money?

And, you know, I mean, that's the last thing you probably ever want to think about, I imagine, right?

I don't, generally wasn't really thinking about, you know, on the back end of things until things started, October, when the AI hub came out.

that was, very big issue, and early intervention that was affecting everybody, service coordinators, providers, things that were inputted did not transfer over, transfer over very well.

things were taking very long to do.

The time put into doing all that was 3 to 5 times longer.

And maybe that's, you know, it took a very long time to keep doing that.

and that was when I started getting involved, with Bridget too, and starting to say, okay, well, we have to advocate for these kids because who is going to?

Not sure.

The kids can't.

So we need the providers.

We need the parents.

We need advocacy groups to help us.

We're going to talk in our second half hour a little bit more about the crisis with the AI hub, which you ought to know about.

But just in general when people are maybe a little less familiar with the work that you do and the state of things.

I tried to sum it up using with the Children's Agenda the way you've been putting it, which is just when you've got, you know, a situation where providers are being severely underpaid, you're going to have a shortage in workers and services, people are going to leave.

And then the long lines get longer for parents.

I mean, that's kind of sums it up.

How do you describe is that fair?

Yeah.

That's fair.

Okay.

I mean, do you know people who are leaving?

Yes you do.

have you thought about leaving yourself?

I really, really enjoy working with kids under three.

I would rather not have to leave.

But I do understand that a lot of providers, don't want to go into early intervention because of reimbursement rates.

I've talked with students and new clinicians too, that have said I love working with families.

I love working with this age.

I want to go into it.

And then they say, but I have student loans, so I can't actually feasibly do it.

And then they they're heartbroken.

because they want to work with this age group, but then we can't keep them here because of the, reimbursement rates.

Do you feel undervalued in this profession by at least by state government?

Oh, absolutely.

I feel valued by families that I work with.

Everyone is very appreciative.

I feel valued by the other professionals I work with.

I feel valued by my, agency.

but when it comes to, you know, anyone above that, I really I don't think they understand what the providers have to do every day.

I don't think they understand what's involved on the back end.

And as far as on billable hours, this is where it kind of drives me crazy a little bit.

But one of the things I admit that my mind went to Alison was, you know, if if someone at that high level of decision making had a child who needed, I, would it be different?

But should it take that?

No, it's for the state to get to that point.

Yeah.

Yeah.

so let me turn to your panels across the table in more danger as a local parent, become an advocate for early intervention.

can you tell us a little bit about your story first?

Yes.

my son Timothy, he went through early intervention back in 2022.

He was 18 months at the time.

he couldn't really walk or talk on his own.

so I asked my pediatrician about it.

so she introduced me to them at this wonderfully funded program that was free early just to call the Monroe County Hotline.

he was able to get an assessment at the time right away.

and so he qualified for speech and physical therapy at the time.

with occupational therapy added on later on.

and I assumed that the services would be there right away.

because they did say it's a federal right to have kids have services within 30 days.

we started waiting.

Waiting?

the service the county gives you a service coordinator help with facilitation of services.

and we just we she just said no, there's a shortage providers.

You're going to be put on an overcapacity, which is like a waitlist.

so I asked her what was that number at that time?

And it was like 657 families waiting or, kids waiting, before he so I just knew as soon as I heard that number that he wasn't going to receive his services.

so in the end, he had of getting a physical therapy.

But we waited seven months for that.

for speech therapy actually showed.

because early intervention only goes til three.

right now he is getting, the services that he does need because he.

So he moved into preschool special ed.

But, that's what made me kind of come out with, to advocate with the children's agenda because, more parents and families.

I know there's so many right now who are still waiting for services.

We also have a fellow parent who's also with the children with gender dysphoria.

her her daughter's currently waiting was call waiting for speech, and they even just told her straight out, you know, that she probably wouldn't receive it until she, like, after three, which is the whole point of early intervention.

So it's just I think it's frustrating for parents and families who are still waiting with, no kind of hope for be able to help for their kids.

Has this surprised you as a parent who maybe before 20, 22, 23, this isn't something you might have thought too much about.

Are you surprised at the state of things?

Well, I actually had hoped that it might improve, like my small glimmer of hope that would improve.

and, you know, that's why we continue to advocate for the Kids Can't Wait campaign.

I, I, you know, I was I was hopeful last year when the governor said that she would give a 5% increase, but then it was delayed so much that, you know, finally she said yes, but then she cut the telehealth services.

So it's kind of like a give and take and it just feels like, like, why aren't you pouring more money into the this program, which could help kids in the long run?

Because if they don't get their services now, you know, it's just going to snowball into things that they're going to pay the government.

Like the state is going to pay more money for for kids who need the services in school age.

Yeah.

Lynn, again, I'm not trying to play a blame game.

I'm trying to assess the situation accurately here.

Do you lay this at the governor's door right now?

Yes.

Yes.

For sure.

Yes.

Because I have traveled for the last two years to Albany.

And the last time we sat down with the the staff from the governor and Bridget Hurley was in that meeting and she, she, the staff said, you know, this is the time for early intervention.

You know, at least that's what we thought that was.

There was going to be some change in hopefully getting more funding.

You got 60s with the governor.

What would you say to her right now?

I would just say, you know, like we've spoken out about this.

You know, we are hoping that you do something about this because, you know, families are, suffering, you know, and kids at this time, this window of opportunity.

So, important for them to get their development that they need.

So just you, you need to do something about this because we're at a crisis and early intervention.

Does this make you more cynical about politics?

More cynical?

you know, I, I would like to say, I know there's a give and take and politicians and and, you know, they do have to certain things have to be passed.

But I do believe that there is money there for them to pour the funding into this important program.

Yeah.

I mean, look, it's easy for me sitting in a studio with a microphone to say, well, it's terrible.

Or to say, you know, how could you not?

I'm not the one constructing the budget.

I know that that's tough.

I just I'm going to say it again.

You can't keep telling people you get it right and that you hear them, and that there's even bipartisan agreement.

And then take the funding away to take the solution away.

That's what doesn't make sense to me.

That's all I would I that's what I would say to the governors.

I'm not saying the job's easy.

Help me understand why this is not a priority.

Because it's not a budget assist.

But it's a statement of priorities, isn't it?

Bridget Hurley?

Absolutely.

Okay, so, take me now through what happens if this if we see a repeat here, are we going to start or are we going to lose more providers?

I mean, I don't want to play like, what's the worst case scenario, but people should know that if 2025 looks like 2024, what happens?

We will continue to lose providers.

Kids will.

More and more children, infants and toddlers will be waiting.

And just to make what when referenced really clear.

So the 5% rate increase, there is indication that it's going to be implemented, but they have cut back on other services in order to pay for it.

So instead of providing more funding to the early intervention system, they are cutting back on rates for providers who deliver through telehealth.

And so, honestly, there's not really an additional financial investment on the part of the state right now in early intervention, even if the 5% is is implemented.

so, we hope we are.

Our goal for this year is another 5% rate increase.

we are also hoping that, a bill that the governor vetoed, recently around Thanksgiving time, that had passed both houses of the legislature unanimously.

we we're hoping that bill will be, passed unanimously again and that the governor will sign it this time.

And that bill would take a really comprehensive look at New York's early intervention program, which is really what we need.

We absolutely need the rate increases for the providers.

But for the sake of the kids and future kids who are going to the program, we need to take a really good look at the program and and identify the unfortunately multiple ways it's failing and how it can be brought back to strength.

If they tell you they're going to build a garage for your car and they build the garage, but they say, now you got to give up the car, you haven't really gained anything.

Okay.

Right.

All right.

we have to take our only break of the hour, and I've got some feedback from listeners, some comments about early intervention, some questions about how the system of payment works.

So we've been using the term reimbursement rate.

You know, it's a little bit in the weeds.

So we're going to talk a little bit about some of the mechanisms of how that works.

And why that matters so much right now.

and then we're going to flip things a little.

We're going to talk a little bit about if, if we did see not just a 5% increase, but if we ended up in a direction that our guests want to go, what might we see pull New York out of the bottom ranks of the country on this issue, which is a I don't think it's a place anybody wants to be.

Bridget Hurley is chief program officer for the Children's Agenda.

Allison Agusta is a speech language pathologist with Bright Start Pediatric Services.

Lynn more danger local parent telling her story.

And we'll come right back and take your feedback as well on connections.

I'm Evan Dawson Tuesday on the next connections, we're going to talk to the team from Rock the future about their annual state of our children report card.

And the grades are tough.

Way too many kids still living in poverty struggling to get their needs met.

In our second, our special live coverage of Governor Kathy Hochul state of the state address, that's Tuesday.

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One this afternoon at two.

This is connections.

I'm Evan Dawson.

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Wherever you are, it's great to have you with us.

We're talking about the crisis and early intervention.

The.

Generally speaking, we're just talking about helping children at the youngest ages get the help that they need at a critical time, so their life isn't filled with challenges that, you know, frankly, is not their fault and in many ways will cost New York State will cost government will cost communities.

More later.

Joanne, listening in Chile says listening to your panel.

Evan, all I can say is 657 families awaiting services.

And yet the Buffalo Bills got what they, quote unquote, need.

That's from Joanne Bauer.

The governor was at the bills game yesterday was good game go bills.

But true.

You know we're talking 6 to $800 million of New York State outlay for the Buffalo Bills to get a new stadium, which, you know, hard times in the fracking industry.

I'm not sure the pools could afford it.

This is where Bridget always looks at me going, like, why do I come on here?

No, I mean, I know I'm being a little snarky today.

I don't mean to be, I really don't.

I also, I do understand Joanne's point here, and I'm not going to sit here and say I don't want the Buffalo Bills like to stay.

I wanted them to stay.

I understood the calculation there.

And I know the governor is from Buffalo.

go bills.

But Joanne sees this as a statement of values.

How do you see that?

Is that a fair comparison?

It's absolutely a fair comparison.

I have to say, there's absolutely no reason why this system has been so underfunded.

I mean, just a reminder that, during Covid, during the pandemic, lots of state funded programs increased their funding, increased their payment rates to providers, early intervention providers got zero.

The rates now, the ones that are most often used are lower than they were when the program was started in the mid 90s, not adjusting for inflation, just flat out lower now than they were.

So there's really no excuse.

I mean it's it's a, it's a plus that this program will save money in the long run because these children won't need services.

But even just in terms of, what the providers need, it's very inequitable and it's worse.

Let me just say, for families with low incomes and, families of color.

Lynn, do you think that the emailer point is fair, comparing with the Buffalo Bills are getting for their new stadium?

Yeah.

Yes, yes.

Because I think if you can pour that much money, there is money you could allocate to something just as important for kids.

Well, I hate to do this, but when a stadium is projected, cost is 1.2 billion or 2 point 1 billion or 1.8, it's going to be higher.

There's cost overruns and they're going to get what they need.

It's going to happen.

And that stadium is getting built right now.

It's going up Cross Street.

from Highmark.

We saw it on TV yesterday.

It's going to look great.

But here we are.

Also know is that a fair amount?

Do you think of it that way?

I do think about that.

Yes.

but I mean, we should be giving more money to helping families that are maybe going to buy bills tickets in the future.

Yeah, sure.

Also go bills.

Come on.

I'm not we're not down on the bills.

We're very up on the bills.

Are you kidding?

It's Super Bowl season.

let me grab a phone call.

This is Jane in Rochester.

Hey, Jane.

Go ahead.

however, this argument just irritates the heck out of me because just like the last person, the call is, it.

This will actually be a very pragmatic thing to work with these children, with therapy, whatever they need.

In those youngest years and months.

Even so, in the long run it will be a money saver.

Well, what are you going to do at 16?

Take them out and shoot them because they're completely functional.

You see what I'm saying?

Like they will deteriorate, more over the years without that sort of a pill.

So they always use that.

And everybody, it seems like with a home, we just don't have the money, but we cannot afford not to fund this.

And it's also a very favorite of politicians are skulking in the can down the road.

We don't get to.

So I just, I just I'm glad you're having this program and sticking with this subject because, you know, children are so helpless and I think we should we should put our trust people in situations who are vulnerable and helpless.

So it's up to us.

Adults do this to me.

The right thing is done.

So I have to say thank you very much.

Thank you.

Jane.

I hear the phone ringing.

It's 844295 talk.

If you want to call the program.

I appreciate that Jane's point.

You know, as starkly as Jane made it, is to say we're acting like once a kid gets to three years old.

Well, they didn't get the services, but, you know, so we didn't spend the money as opposed to what are we looking at now in the future?

I mean, I don't know how you measure it, but is the point fair?

Yes, the point is fair.

And actually, probably since the last time I was on and you asked me the question, we have, found some research and, every time a child receives early intervention services, depending on the state, it says between 9000 and $17,000 a year per child in K-12 special education services.

Now, not all children who some kids, you know don't need services after early intervention.

But for the ones who do, they it it actually improves them to the extent that this school system saves thousands of dollars each year per child.

So you can imagine how that would add up in a state like New York.

Well, I mean, also me, your job is working with kids from six months to three.

I mean, that's the window.

You see them?

Do you ever think about what their life might be like if you weren't in it?

It's hard.

I'm it's hard to imagine.

but yes, I mean, I could see very frantic, anxious parents.

trying to help their kid doing whatever is needed.

They'll do whatever they need to do.

but they may not have the tools to do that.

They don't know what's available to them.

And I think that would be very harmful for parents.

I mean, you want to weigh in on that, Lynn?

I mean, a big part of Jane's concern is, in her phrase, kicking the can down the road.

But acting like this isn't an issue in the future if we just don't deal with it now.

Right.

What do you think?

Yeah, I, I truly believe because, you know, there's so many research that's been done about brain development.

You know, that 0 to 3 years, even 0 to 5 years is such a important window.

And for kids to not get those, intervention that they need, you know, it sets them up for who knows what other kind of developmental problems or, behavioral challenges later on.

we can't predict that.

But definitely, like, somebody who can be able to a kid who can have that at that right time is is so crucial.

David, writes in David is listening in Vancouver, Canada.

Former finger Laker who moved to Canada and this is on the WXXI mobile app.

David says I agree with Jane and it's great to hear her call in again.

It's been a little odd since we've heard from Jane.

Jane, David, kind of a roster of somewhat regular connections.

interactors in the audience.

So if you are listening on the radio, if you're on the app, if you're in another state and you're from here and you moved away and you're staying connected, if you're on YouTube, we want to hear from you and join that audience and either call the program at 844295 talk.

you can email the program connections@sexy.org.

you can make comments on you can be some of the few really constructive good comments on YouTube.

I'm going to keep joking about that.

But no, it's good.

It's good to hear from people.

In fact, here's Ellie on YouTube saying early intervention has the greatest return on its investment of almost anything the state can put money towards.

That's from Ellie.

I mean, it's exactly what Jane's point was, exactly what our guests were just talking about.

Shannon on YouTube says in headstart, this is an issue for our families.

How can we better advocate for these essential services about poverty and equity?

This is an actionable way to improve equity for our children in need.

But how do we advocate?

So I mean, that's something that that Lynn's doing now.

Do you feel like you've become a better advocate?

Do you feel like you've gotten somewhere?

Yes.

I mean, I would say, if you are a parent or a family or somebody who's been affected by early termination services, definitely look up the children's agenda because they are on the front lines of advocating for this.

And we have a big parent, advisory group, advocacy group, and we go down to Albany every year, to, to fight for the kids.

Can't wait.

What do you think you've learned?

What have you learned the most since you started advocating?

Lynn?

that politics isn't easy for sure.

You gotta be patient.

Yes, you gotta be patient.

but also, I think, we've gotten to know our our our local assembly and, Senate.

and they've actually been actually been strong supporters of early intervention.

So that's been very helpful, especially, good chance for Bridget at, the children's agenda, Bridget Hurley's chief program officer, to mention the Shannon or anyone else listening.

If you want to advocate and you've never really done something like this, what do you want people to know?

what I'd like people to know is that, you can make a big difference.

everyone can make a big difference.

we offer all kinds of training and tools and opportunities to develop advocacy skills, but it really just takes a person with lived experience sitting across the table from, an elected official and, they don't actually speak with real people all that often, so it really does make an impact.

I was sitting in a budget hearing last year listening to the Commissioner of Health of New York State talk about that.

He'd heard from some parents, and he referenced a parent in Rochester, and he was talking about Lynn.

So it really, makes a big impression.

So folks should look up the children's agenda.

They should look up, the Kids Can't Wait campaign and social media, folks should come with us to Albany on February 11th.

We're taking a bus.

we provide all the transportation February 11th, February 11th.

And we will we will plug you into some meetings with legislators and provide what you need.

and so we would welcome anyone.

There's busses coming from Buffalo, there's busses coming from New York City.

It's it's going to be a statewide, presence in Albany that day.

But there's year round there's opportunities for advocacy and it really does make a difference.

So I had this little knowing smile.

And Bridget said it's important for lawmakers to to hear from real people because the implication is like, well, Bridget's not a real person.

but Lynn is.

But in the construction of media, years ago, I had a, news director who said, now, I mean, the the public needs to hear real voices, not always just the officials.

And it is not easy when you are raising a family, when you're working, when the last thing you want to do is put on headphones and talk to public media or go to Albany.

But if they don't hear those voices, it feels really abstract.

And I know so I know what you're doing in February is really designed to change that.

We'll see if it works.

Well, maybe we'll talk to you on the other side of that.

I mean, Alison, I don't know if you were thinking, you know, I really want to just get these headphones on and talk across public media.

Yeah, I got nothing to do.

what would you say to Shannon and others who are thinking about advocating, but maybe haven't done it before?

Oh, absolutely.

We need your voices.

We need everybody's voices.

Because so far, Bridget has been doing great work and we're still here.

We're here again on this program.

so we need parent voices.

probably go a long way.

The story is we need more advocates from therapists so that we can, you know, get the budget passed and get the increase that was promised.

and you just I would not hesitate to be an advocate.

thank you for the comment.

Shannon.

Let me get Richard on line one.

Hello, Richard.

Go ahead.

Hi.

mine's a little different subject.

I was three before I spoke, but my mother spoke to me all the time, constantly.

And so when I did start speaking and three, I was ahead of the game, I was top of the class.

what do you do with parents?

Parents who don't know?

I was an only child, so I didn't have siblings to talk to.

What do you do with parents?

So it won't be necessary to do the expensive treatment with children?

I could, I don't know.

Alison, do you want to take a shot of that?

Well, if you were getting your child under three in the early intervention system, you would have a support system.

You would have a service coordinator, you would have therapists to help you and coach you.

What to do?

if you weren't talking or have other issues, you'd have a whole team of people to help you if you got into the early intervention.

That was that wasn't my question at all.

Sorry.

Go ahead.

It's much cheaper to coach a parent.

you got to talk to your kid all the time.

That's much cheaper than what you're talking about.

So you're talking about avoiding the cost of early intervention and helping the parents get that training.

Richard.

Yeah, the training is just.

Hey, you know how to talk.

Your kid wants to hear things.

Why don't you talk to your kid all the time?

And then the kiddo, the brain will develop properly.

May not talk back to you because you may meet all their needs.

But when they do start talking, they'll be top of the top of the pile.

So hang there for one second, Richard.

Go ahead.

Allison.

Again.

Allison, the speech language pathologist.

Go ahead.

So the premise of early intervention is a coaching model and it is going in and not providing I mean, you are providing a service, obviously, but you are coaching the parent to like, so if you had a child that wasn't talking, then it's my job to go in and coach the parent to get the child to talk.

So because of that model, it's helping the actual family as a whole dynamic and not just an individual.

Like, say, if you are going to do therapy one on one, or the child, like if the child was older and needed a different issues, and it's this age system.

Okay.

And and Richard, I'm wondering, Richard, are you are you concerned that not enough parents are talking regularly with their kids are sort of proactively doing this even without I?

I know that for a fact.

I'm a landlord.

I've been in a lot of houses in households, poor households with very undereducated parents, and they never talk to their kids.

The TV's on all day long.

Well, I look I think there's probably a lot of layers to and Rich.

I'm not discounting your experience one bit.

It's always good to hear from you.

I do appreciate the phone call.

you know, I mean the challenge of poverty has a lot of different layers.

And I would be hesitant to just endorse the idea that.

And I'm not saying Richard's putting it exactly this way.

I don't want to just blame parents, especially parents who are living in poverty for the problems that kids have with speech.

Or I need, because there's plenty of parents who are not in poverty whose kids have those needs.

Richard seems to see in his experience a disproportionality.

I don't know if you see it that way, Bridget.

I'll just say that we have a local Assembly member, Josh Jensen, who also did not speak until he was three years old, and he's a strong advocate for early intervention.

And he has also mentioned that his own children have, utilized early intervention systems.

So I, I don't think that it's necessarily a measure of income, whether or not you need early intervention services, it's definitely a measure of income, whether you actually get them when you do need them.

but if you like, Richard, I'll just follow up with Allison and just say, is it a good idea for parents to just talk to your kids?

Absolutely.

You should definitely talk to your kids.

Talk to your kids.

Absolutely.

And, Richard, I did not, I Richard, someone who I've gotten to know in this community over the years.

I did not know that part of your background.

I appreciate the personal experience, and I am certainly glad for you that you had parents talk to you.

so talk to your kids if you can.

But also, you may need.

Yeah.

And so let's talk a little bit about what did happen in October.

So this I have that you might have heard about.

it certainly sounds like a panacea.

Bridget Hurley I'm laughing because the second I said panacea, it's like there was a string connecting your eyeballs to the ceiling.

a new state database called the Early Intervention Hub launched October 15th, allowing providers to enter child data, approve services, issue payments.

So what's been the issue here?

How would you describe it?

So I have to say this is separate from the issue that we've been talking about for years.

in terms of low, funding, the AI hub is just a replacement system for, system that, the Department of Health has been using for years.

That has become outdated.

And so they launched this new system.

They spent a couple of years testing it out with providers.

I'm going to turn it over in a couple minutes to describe the experience of when it was launched.

But what's happened is that there has been, tremendous difficulties with the using this new system, and I am watching via social media providers saying I'm done.

I've, I've held out this long, you know, thought I was going to get this 5% increase.

We haven't gotten it.

And now I can't even get my services into the system so I can get paid.

So providers have literally been waiting for weeks for for payment.

And so it's just accelerated the departure of providers, which means it's going to grow the number of children waiting and I intervention hub that's now just three months old is actually making it worse.

Yes.

Yes okay.

You want to elaborate on it?

it's a multifaceted issue.

so the AI hub, when it launched, for it got taken down for a couple weeks and then we knew we were working through it.

And then when the data was migrated over, it wasn't necessarily migrated over correctly.

So things weren't licensed.

People's license numbers were in not correct.

and the service coordinators have been spending hours upon hours upon hours.

They're working on weekends, working on holidays, working in the middle of the night, because that's the only time that I.

Hub actually worked.

and then agencies are trying to submit for billing through the AI hub.

That's not always being reimbursed.

So there are providers, who, you know, also have created groups on social media because they're trying to help each other.

So there's been a huge disconnect between the communication between the state, between PCG and between the users that are is just falling apart.

Okay.

So that's going really well.

just it's a really rough situation with early intervention.

It's it's been an it's kind of been amazing ongoing story to cover.

and I admit, even when I heard little glimpses of an AI hub, I kind of naively thought, oh, all right, something a little more proactive, something that's going to help.

And here we are.

is there anything that could make this an effective hub?

I mean, I, I you look pretty doubtful, Allison.

I'm I'm not sure because I'm not involved with the creation of the hub, and I'm not sure what goes into it.

but it obviously isn't working.

All the users have stated that it's not working.

It's not a fix right now.

Okay, here's another YouTube comment.

Jeff says the 5% increase was needed a long time ago.

When was the last pay increase provided?

5% increases every ten years is not, solution.

That's from Jeff.

What do you think?

So before, before this, the only, recent increase was in, I believe was 2020.

There was a 5% increase for, certain types of providers.

previous to that, there was sort of an up and down in rates around 2010 and 2011, but it's been years.

It's it's in effect it's been years.

And as I said, it's been lower.

Does Jeff have a point here.

Absolutely.

Okay.

So I know it's a little wonky, but will you just briefly explain the mechanism when we talk reimbursement rates, where the money is flowing from and how this happens?

Bridgett.

Sure.

So, early intervention is, you know, it's it's a state based program that's, mandated by the federal ID act.

And, so there's some federal funding.

The state gets it.

the counties actually administer it, but the state sets the rates that, excuse me, the rates, the payment rates.

So providers, you know, provide the service they submit for billing based on what county they're in and what service they provided.

They are paid.

I'm not sure how you're paid, Allison, whether it's a check or deposit, but.

So that's that's how the payment rates go.

about a third of early intervention services are funded through Medicaid, and the rest comes from private insurers and state funds.

The counties have to also provide some funding.

and so that's how the system works.

And could someone say, well, hey, then County should provide more if the state won't, what do you think?

I honestly don't care where their money comes from.

I just know that there needs to be more.

But I will say, I think the counties are feeling stretched with the amount that they're paying right now.

Okay, so that's how it's working.

And Rebecca in Rochester wants to weigh in on the phone.

Hello?

Rebecca.

Hi.

Thanks so much for having this conversation.

I'm a nurse practitioner, a pediatric primary care provider, and I, over the past decade, just can't tell you how thankful I am that early intervention is present in our community.

And on the flip side of that, how hard it is because of the lack of service providers now, so I just one wanted to thank you for putting this out there for us to kind of increase community awareness and also put out there that are there ways that I can advocate and support your work as somebody, who works with kids, I am here and would love your suggestions.

Thank.

Well, we're down to our last minute.

So, Bridget, you want to take that one?

Yes.

please connect with us at the Children's agenda.

or, the Kids Can't Wait campaign.

The children's Agenda is the organization.

And we organized the coalition, which is active around the state.

And the name of the coalition is Kids Can't Wait.

So I it's 256 2620 is the phone number of the children's agenda.

Five eight, 52562620, you could call that number.

Or you could look for the children's agenda or kids can't wait on social media.

We're pretty much everywhere.

Let me turn to Lynn.

More danger for a final thought here are several years into this.

Now, do you think this is the year something changes for the better?

Are you are you now cautiously concerned that that's that's not going to happen?

I'm still hopeful because I believe in the program.

It works if kids can receive the services in a timely manner and I think we just need more families and people to come together to speak out on this.

Alison, final thoughts from you.

What do you want to leave with listeners and viewers here?

Please help us abdicate at the state.

We need help.

I took about five seconds.

I gave you a final minute.

She needs five seconds.

They need.

They need advocates.

February 11th.

You're going to Albany?

To Albany?

Got more room to take.

More people?

Absolutely.

Will get another bus if we need to.

that's for the children's agenda.

So if you want to get in touch with the children's agenda that's coming up, in just about a month's time and we're going to learn a lot from the governor tomorrow, and Tuesday of this week, the second hour of this program tomorrow is governor hopefuls, state of the state address.

And that's typically followed then in the coming weeks by a budget address.

And we'll see budgets or statements of priorities.

Alison Agusta, a speech language pathologist with Brightstar Pediatric Services.

Thank you for being here.

Thank you.

Lynn.

More danger, a local parent, advocate for early intervention.

Thanks for telling your story.

Good luck to you.

And Bridget Hurley, chief program officer for the Children's Agenda.

Thank you for being here.

Thank you.

Well, reminder, this conversation is part of the dialog on Disability Week partnership between six I and the legal community of agencies in conjunction with the Harmon a Margaret Schwartz Community series from all of us.

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