>> From WXXI News.

This is Connections.

I'm Evan Dawson.

>> Our connection this hour was made with a lawsuit.

Agencies that represent children and families across New York State are suing the state, suing the state Department of Health.

In fact, they say the department is violating its own regulations when it comes to helping children with developmental delays and disabilities.

And to be specific, they say the DOH is failing to provide full reimbursement for early intervention services.

E.I.

services children's advocates say this issue has reached a crisis level, with tens of thousands of kids from birth to age three left waiting for services that they need.

Some of these kids have conditions like autism, cerebral palsy, down syndrome, and according to the experts, New York ranks near the bottom of the list 48th in the country for delivering these E.I.

services on time.

A local nonprofit group, The Children's Agenda, is calling on New York State to conduct a comprehensive study of other states early intervention programs and identify best practices to improve its own.

And we're going to talk about those steps this hour, as well as what the advocates hope to accomplish with the lawsuit.

Now, our guests here are not the experts necessarily on the lawsuit, but they have a lot to say about E.I., what it means for kids, who is affected, and what it means when kids do and do not get these services on time.

I'd like to welcome our guests in studio first.

Brigit Hurley is chief program officer at the Children's Agenda.

Welcome back.

Thank you.

And with Bridget is Rachel Bonsignore, who is director of Lift Off Western New York.

Tell us what lift off Western New York is.

>> Sure.

Well, great to be with you, Evan.

so, Rachel Bonsignore lift off is an alliance of funders and hundreds of Western New York leaders that are all working together and championing young children.

And what brings us to the conversation is one of our priorities, is focused on early intervention, making sure children with delays and disabilities have the supports and services they need to thrive.

>> All right.

And on the line with us is Zareen Kamal, a policy specialist at start early Illinois Zohreen, welcome.

Thanks for being with us.

>> Thank you so much.

>> And Bridget helped foster this connection with Zarin in Illinois.

Why did you want to make sure we meet Zarin this hour?

>> Bridget for two reasons.

One is just to illustrate that New York State is not the only state struggling with early intervention.

and also because Illinois in particular is interesting because they completed the study that we are advocating for in New York State to take a close look at early intervention and what's needed to change.

And also, Zarin has had some success working with parents who are advocating for their rights within the the Illinois E.I.

system.

>> right off the bat, I should say this is obviously not the first conversation we've had about E.I.

here.

And for listeners, if you don't have a child in your immediate family that needs these kind of services, you might not see how acute this is.

We're going to talk about in very real ways about the effects on children.

But when I say this is a bipartisan issue, we talk to state lawmakers before and after budgets are passed, and there's a lot of disagreement in politics.

This is an area where there's a lot of agreement, and I'm always amazed that we we always get to the finish line.

And it's like, well, the lawmakers agreed.

But the governor's budget or the final budget didn't include, you know, the funding that was necessary.

And so New York State, 48th out of 50.

Bridget, I mean, is that a valid metric?

You think.

>> It's a valid metric?

It's comes from a federal report that's produced annually with data given to them by the states.

>> What does that number mean to you, Rachel?

>> It's I'm normally a glass half full kind of gal, but being 48th is a statistic we certainly don't want to celebrate or champion.

And so that's why we think that some of the proposed solutions to this issue are really compelling and actionable right now.

and so this study is really about reimagining early intervention so that we're able to serve the well over 70,000 children in New York state who are eligible and enrolled in E.I.

That's that's the amount of kids that you could fill a stadium.

Right.

So this is we're talking a lot of children and being able to reprioritize and reimagine the system we think can be really compelling.

>> So we're 48th.

Nobody ever chanted.

We're 48th.

Zarin, do you know where Illinois is on that list?

>> Actually, I don't have that data on the top of my head, but like Bridget said, you know, I'm really glad that we're having this conversation across states because even though, you know, we know that when you only know one E.I.

system, you truly only know one E.I.

system.

We do see that some of the challenges and issues we're seeing are not just specific to one state, like Bridget was saying.

And so the cost model that was mentioned, it came out of a great need.

And we do have similarly thousands of children and families on waiting lists for services currently.

>> I think Bridget's got that nationalist.

Where do you see Illinois?

>> It looks like about 77th.

>> Wait, wait 77th.

>> Excuse me.

I'm sorry.

>> How many states are there?

>> Sorry?

43rd.

>> 43rd.

>> Okay.

>> So 43rd.

Illinois, 48th.

New York State.

And we're talking about the on time delivery of services.

And, Bridget, before we jump into what you think can happen next, I always feel like I'm missing something in this conversation because when I talk to Republicans, when I talk to Democrats in the legislature, they affirm what you are all saying and they talk about the need and they talk about kids, and they talk about a moral need, and they talk about the fact that they would support more funding.

And then it doesn't get done.

And I want to state for listeners, we would love to have the governor on.

We've invited the governor a number of times to talk about this, but also talk about a wide range of issues.

The governor can come on this program whenever she wants.

It's an open invitation.

we haven't been able to secure a conversation about this with the governor, but most of the time when I talk to lawmakers, not I'm not talking about Bridget and Rachel, say, it's what lawmakers tell me.

They say, well, it's the governor's fault.

I mean, something happened in the final budget or the governor's office when they put the numbers in and they don't see the priority here.

So I feel like there's a part of the story I'm missing.

Do you think I'm missing something?

Bridget?

>> No, I don't think you're missing something.

But I would just to remind you.

Say that in her defense, the governor did include a two rate increases in the 2024 budget for early intervention.

A 5% rate increase for services delivered in person and a 4% rate increase additional rate for services delivered in rural.

>> What were you asking for?

>> 11.

>> Yeah.

So in her defense, she included not not half of what you asked for.

>> Right.

>> And it wasn't nothing.

>> Right?

It wasn't nothing.

But I will say that in order to get that rate implemented, they needed federal approval.

They were very late in requesting that federal federal approval.

And so now it's sitting at the federal government.

that is not particularly prone to funding additional children's services.

>> In the moment.

>> In the moment.

>> Okay, sure.

So to make sure I've got this here, you asked for an 11% increase.

The governor went with a five and then a four.

Two separate numbers for two different geographies.

>> Four is a pilot.

Yeah.

>> Okay.

so didn't give you the 11, gave you a four and a five, but that hasn't even gotten done yet.

>> Correct?

>> Correct.

Okay.

So I don't know what what we're defending in the governor's office there, but okay, you're being diplomatic and that's part of your job.

I don't have to be as diplomatic, I just I don't work in this policy area.

I would like to ask the governor what I'm missing.

And I would I say that with Grace, I don't know this issue inside and out, like our guests do.

I don't know what what Illinois is doing the way Zareen does.

It's not my policy expertise, but if I'm missing something, I want the governor to tell me otherwise.

Kids need this funded.

So that's kind of where it is now.

Can I ask the guests in the room here about this New York lawsuit?

This is not your lawsuit, Bridget.

This is not Rachel's lawsuit.

However, New York state's getting sued over this.

And I wonder if that gives you any sort of optimism that that would change anything.

>> Absolutely.

The law that or the regulation, I should say, that is being violated is, one that would require that states that the Department of Health should review early intervention services, service reimbursement rates every year for their their ability to attract enough providers to serve all eligible children.

the law also states that the rates do need to be enough, that it draws providers to serve all eligible children.

There is no doubt that New York State is violating both of those provisions of regulation under the Department of Health.

>> Anything you want to add there, Rachel?

>> no, I think that Bridget, you know, said it very well.

I think there is an opportunity.

We we know that the provider community, there's some counties that don't have providers.

Right.

And so we know that there's there's an exodus of those providers leaving the field and that they want to be in early intervention.

And so this is an opportunity to really actualize that and hopefully bring some additional attention to the issue and the opportunity to make sure that we have the workforce there to support children when they need it most and when it's most effective.

>> So let me get an email that we already have from Alex, who sent this this morning.

He said, thanks for hosting this conversation, Evan.

I wanted to highlight that a team from Children's Rights just successfully settled a years long class action suit with New York State for their lack of providing timely, necessary services for children who struggle with mental health issues like in-home behavioral health, supports, care coordination and crisis response services.

I fully expect acts will be similarly successful in demonstrating the state's negligence in addressing gaps in E.I.

While the impulse may be to point to federal headwinds facing legislators to cut back on services, these services went under supported through the Cuomo and now Hochul administrations by short sighted cost cutters.

Early intervention drastically improves childhood outcomes and reduces participants later use of services as an adult, be it community based services, institutionalization, or as North Carolina found, even incarceration.

And then Alex sends a link to a separate story there.

So Bridget, you want to comment on that email?

>> Yes.

We are very excited about that win that came out of the lawsuit around mental health services, because the lawsuit was based on a provision of Medicaid.

The federal Medicaid program.

that's called Epsdt.

I won't go into it, but E.I.

sits right next to mental health services in that provision of Medicaid.

And clearly, the state Medicaid program is violating the federal requirements.

And so there's a there's definitely conversations about whether a similar lawsuit could be filed around E.I.

>> Okay.

So just closing the book on the lawsuit situation.

Do we know the timeline on when we're actually going to hear any action on this?

Do you know Bridget?

>> No, I don't okay.

>> sometimes these things happen quickly.

Sometimes they don't.

We'll be following that with WXXI News.

Of course.

listeners, if you want to share your thoughts throughout this program, you can do that on multiple platforms.

If you want to email us, you can email Connections at wxxi.org.

If you're watching on the WXXI News YouTube channel, you can join the chat there.

Or you can call the program toll free.

It's 844295 8442958255263 WXXI.

If you call from Rochester 2639994 so you can join the program.

in different ways there.

And I'll just close the point on the lawsuit with this.

I mean, if you hear that someone is suing the state for not spending enough and you're feeling is to Alex's point in the email, boy states are already strapped, what else can they do?

Everything is a choice.

I mean, I know it's become cliche by now, but budgets are statements of priorities.

And just take for example, I mean, like I, I've coached youth sports for years.

I know the state spends on youth sports and I think they should.

I think it's great, but it's hard for me to stack it up and say, spend it on that or spend it on any number of other things before you fully fund the kids who are the most vulnerable.

Age birth to three when they have needs that are unmet.

I don't know how you are prioritizing other things, so that's the last thing I'll say about that.

You got like the cat that ate the canary.

>> No, I you know, I think there's this is it brings back to your earlier comment just about the experience with the system.

Right.

And those that haven't had that direct connection.

And so this is the opportunity of putting in these times that are fiscally challenging, of putting all the cards on the table.

Right.

We have an opportunity to really look at this in a very comprehensive and creative way, particularly, we know that when we're dealing with very difficult fiscal years, and whether that's federal changes in priorities, New York State, how they're responding that this is an opportunity that we have to really look at it.

What are the administrative opportunities, what are the regulatory?

What are the funding mechanisms?

Where are those opportunities that we can really explore as a community with parent voice, with provider voice advocates, pediatricians and everyone in between to say, how can we do this better in a way that would be responsive and and fair?

And so that's, that's a little bit of the, the smile that I have.

Because the thing is, is we, we can navel gaze and but at the end of the day, we have an opportunity and there's something we can do.

>> So Rebecca in Rochester, I'm going to take your call in just a second, just briefly, to set the stage for not only Rebecca's call, but some other feedback here.

I want Zarin and Rachel and Bridget just to briefly tell the audience when you look forward.

Not again, Bridget said.

Let's not just keep looking back.

Look forward and tell me what you can do for kids with these kinds of needs.

Zareen Kamal, a policy specialist at Start Early Illinois.

When you are funded the way you want and you're doing what you need to do, tell me the kinds of interventions you're providing for kids.

>> Absolutely.

I think, you know, it's this is really important because the research is clear on the benefits of these services to support both, you know, not only young children's development, but early intervention is all about a family coaching model.

Right.

And so there's also the strengthening of families.

capacities to meet their child's needs.

It also reduces future health and educational costs.

By then minimizing the need for special education services down the road.

So we're talking about therapies that are babies really need in terms of physical speech, occupational, developmental and Illinois.

We provide a range of 16 different therapeutic and developmental services.

and we see and hear from families really how impactful these services are, not only for their children, but also for their entire families.

And it really empowers parents and caregivers to advocate for their own children as well.

The support that they receive from the therapist, from the providers in the system as well.

So I think that's really a key aspect of it that we hear a lot as well.

>> Okay.

Let me briefly ask Rachel and Bridget to weigh in.

Go ahead.

Rachel.

>> Yeah, well, we know that early intervention works, right?

That's the good news.

And we know that particularly for those who have had success with the program, that this is unexpected growth and milestones that we're reaching.

Right.

That's like 60 to 75% of those that receive these therapies in these early interventions are on a path to be even more successful when they reach school.

So this is the real clear win here.

And that if every child in our community and New York State has those connection of services, we know that their ability to thrive and get to school, they'll be much more prepared and much more successful.

And we also know the deep implications that this has.

As Zarine was mentioning around families, families, stability.

Right?

The opportunity for families to have improved mental health, improved capacity to handle the child's needs.

And so it really is a mutually beneficial program in a whole host of reasons.

And Zarin had mentioned a couple of those.

>> Really anything you want to add there?

>> I would just say in my vision of a new E.I.

yes, there would be adequate funding and that's going to be a big lift.

And we will continue to pursue that.

There are also opportunities, though, around how our service services delivered.

Who is delivering the services, how are the families engaged with the program overall?

So I think it's it will look very different when we get to the point where all kids are fully are fully served and the state builds some flexibility into the program.

>> All right.

Let me grab some phone calls.

Rebecca and Danielle, Rebecca in Rochester first.

Hi, Rebecca.

Go ahead.

>> Hi, I'm doctor.

I'm a doctor that works with kids with disabilities in the Rochester community.

and I just wanted to share that every day I see families that are just sitting on waitlists, and I see kids get further behind often when they have a certain delay that's not addressed, it just directly impacts the way that they engage with the world.

And they often get further behind.

And every day I have to walk families through the E.I.

system.

And the stress that comes with sitting on a waitlist.

and so I even had families that have moved from other states with the hopes of New York.

And their mind is the place where they will finally get their kid help.

And then they are very often disappointed when they have such a long waitlist.

So something definitely needs to be done.

And I just appreciate all the advocacy efforts that are going into looking, into the next steps for this doctor.

>> I'm again, this is not my expertise, but my understanding is once a child has been approved, they are supposed to receive services within 30 days.

according to New York State standards.

Does that sound correct to you?

>> Yes, that is correct.

>> Okay.

So but you're talking about families that are sitting on a waitlist for a lot longer than 30 days.

It sounds like.

>> Oh, definitely.

>> Okay.

so that experience.

Thank you, doctor, for for calling the program and sharing that.

And Rachel, let me start with you there.

So, you know, there's someone who is working every day with families who are stuck on a wait list, which is its own kind of stress.

What do you want to add there?

>> So I really appreciate the comment.

And a couple of things that I want to share.

One, the New York State Academy of Pediatrics is also actively championing response, including some of the solutions that we've been talking about.

I also want to share, just to compliment the doctor's story is that in Western New York, we have a very tremendous advocate and neonatologists that has also shared some of their concern.

and one of the specific examples that I always want to uplift, just to give context of what this means to wait particularly in the greater Buffalo Erie County area specifically we know that the doctor, this doctor Tracy, doctor, Megan, Tracy also shares these similar concerns about families waiting.

And she recently shared a story with us that there was a baby that was born prematurely and was in the NICU, born at 23 weeks, that had multiple risk factors for cerebral palsy and that baby waited 11 months, 11 months before receiving services.

So just to elevate that, this is we are seeing this in our community.

We are seeing this across Western New York.

And this is just one story.

that certainly would compliment the doctor's comment.

And we know that that is it's absolutely abhorrent to hear those the duration of waitlists and the impacts that it has on the child's health and well-being, but also the family.

>> Zarina, their waitlists in Illinois.

>> There are waitlists in Illinois.

And, you know, as was mentioned, families are legally entitled to timely E.I.

services under state and and federal law.

And what families often don't know is that they have protections and guarantees when those rights are not being met, when those timelines are not being met.

and providers also may not always know that there is something that you can do to support families and that.

And so in Illinois, we've been working to bring awareness to families of those rights, of those timelines, and really what they can do so that they're not just stuck on wait lists.

And while the burden should not be on families we see that families are being forced to fight for the services that they are already owed.

Right.

And so families have been filing complaints with the state.

and we've seen that those formal state complaints have increased nearly six fold.

So they went from 7 to 40 in just one year this past year.

So families are becoming more aware of their rights, their speaking up.

And it's really making a difference.

>> Well, Danielle in Fairport has ideas for families that have been on hold.

So let's get that phone call now.

Hey, Danielle, go ahead.

>> Hi, there.

I'm actually calling as a parent to multiple children that have disabilities and that have been on the waiting list in the past.

My question for the panel is what can families do right now while they're waiting to hear back from E.I.?

>> It's a very important question.

Thank you.

Danielle.

Bridget, do you want to start?

We'll go across the panel.

>> Go ahead.

Sure.

So one thing they can do is consider submitting a complaint, which is what Zarin was just talking about, is being done in Illinois.

It is unbelievable how few complaints New York state receives for its E.I.

program.

And that's because it's a complicated process to submit one.

So I would just encourage parents who are waiting to reach out to there's a variety of parent support programs that we can share where they could get support to submit those complaints.

And then secondly, make sure that the governor knows that they're waiting and how upset they are.

>> Okay, Rachel, anything to add?

There?

>> Yes, advocate, advocate advocate.

the kids Can't Wait coalition is statewide, and there are very easy ways to plug and play into this.

And I would say reaching out to our policy makers, our decision makers whether that's in the New York State Legislature or your congressional representatives of just vocalizing your concern.

And there's multiple platforms and ways to do that.

You can join us in Albany to meet with decision makers in in early February this coming year.

But there's also February 10th, to be exact.

and Bridget and I would be happy to to connect Danielle and any parents or others who are concerned about this issue in ways to to join us in Albany, but then on social media, we have active opportunities, real time opportunities to to share, to raise awareness, to tell their story.

And so for me, I think being able to express that to those that are in the position of power to make some of these important decisions is to hear directly from parents and those in the system of how important this is, and to really share those examples.

that would be the first.

And the second way, of course, is just being able to keep connected with your pediatrician about resources.

There are so many different parenting programs in Western New York.

There's help me grow Western New York.

That is a phenomenal resource.

and others that we can provide after the program for your listeners.

>> Danielle, if you don't mind me asking just how your own family experience has been and how things are going right now.

>> So we have actually aged out of early intervention services, which happens to a lot of families.

So we're currently working with the school district, and they've been wonderful.

>> I am glad to hear that.

And I thank you for your phone call, and I wish you and your family is certainly a lot of luck.

Danielle, one of the recommendations, let's see if I can pull this up here.

One of the recommendations include to involve local government in the service delivery system.

I don't know if that includes schools.

I don't know if that like what entities we're talking about here.

Bridget.

we're involving local government.

What does that look like?

>> Well, actually, the counties right now are very engaged with E.I.

They they are they connect families with therapists.

and in a number of other functions.

I think what would be really helpful and what we suggest, New York State, look at when it does this comprehensive study, is there are some counties that are doing better than others and matching parents with providers.

I have to say, Monroe County is really a model county in that regard.

I think they're they're the county executive and all the way down to the E.I.

program administrators are doing their very best in trying to be very creative.

And there are other counties that I think could benefit from from that.

>> Okay.

Danielle, again, thank you very much.

The report that we've been talking about also recommends that New York State make changes that have worked in other states here.

And one of them is to house or co-host the program in the state's health department, education department, or other child focused department, which seems wonky.

But the effect can be important here.

And from what I'm reading again, Illinois is an example here.

Bridget, that has done this.

Is that right?

>> I believe Illinois is in the process of changing its administration of the program, but Zarin would be the.

>> Yeah.

Zarin, can you jump in on that?

>> Yeah.

So our early intervention program currently sits within the Department of Human Services.

But we are moving towards a new early childhood state agency.

And so early Intervention will be moving into the Department of Early Childhood.

As of July 1st of 2026.

Okay.

Along with other early childhood programs.

>> Okay.

So and again on a list of policies that are are going to sound kind of wonky in the weeds.

This is one of them.

But what's the possible benefit that you could see here?

Bridget.

>> So one of the reasons why we think New York State should look at, we're not recommending that, that it happened until it's been studied thoroughly.

But look at shifting early intervention from the Department of Health to the Department of Education is one the providers would be better compensated.

two, the the ROI that the results of E.I.

would be more visible because right now, families begin in Department of Health, and then if they're moving to preschool special education that's housed within the education department, there's no way to track progress.

We know from national studies that kids are better off in preschool and beyond.

But if the E.I.

program was in was in the Department of Education, then we could see that more clearly.

And I think it would make a difference to policy makers, especially the Division of Budget, about who's concerned about the cost of E.I.

>> Is there traction for this?

>> There is a lot of conversation.

I don't think anyone has taken it very seriously.

And so we're trying to get it a little bit highlighted.

>> Listeners, we're talking occasionally about this report, Reimagine the Future, the need to reform early intervention in New York, which we can post in our show notes when we post the show on our various platforms later today.

If you want to check that out and share it yourself, let me grab a phone call from Earl in West Orange.

Hey, Earl, go ahead.

>> Hey, Evan, good to speak with you again.

the reason I called in is I am a product of early intervention in Illinois.

Before it was early intervention.

basically, basically special education.

So your your guest from Illinois, I don't know which city she's calling from.

I went to Fairchild Hall in Bloomington Normal and then to Thomas Metcalf, which were both lab schools of Illinois State University.

So without that, as a victim of polio who lost his mother to polio as well, I don't know where I would be.

I certainly had the intellectual capability, but I was initially pigeonholed as special education, which was great.

I mean, I had great schooling there, but it only lasted two years until I mainstreamed into the regular classroom.

So I'm really sorry to hear that.

E.I.

is underfunded.

and neglected here in New York State.

Anything I can do to volunteer give your guests my name and my contact information.

I'm more than happy to to to do whatever I can.

>> Earl, thank you for the phone call.

And this is in the small world department, but the Connections audience is big and wide.

And here we are with a caller from West around Decoite who's got these roots in Illinois.

And one of our guests on the line today is Zareen Kamal is a policy specialist to start early Illinois.

So let me ask you, Zarin, first of all, about what it is like to hear a phone call like that from a Rochester with Illinois roots, who says that those kind of interventions have impacted his life?

In impossible to measure ways?

>> First of all, thank you so much for sharing.

I'd love to see the connection there.

And yeah, I think it really just highlights, you know, when early intervention works well and is right, like the system is working the way that it's supposed to, just the impact that it can have.

on on children and families and, you know, the long term impacts as well.

So thank you so much for sharing that story.

>> Okay.

And in studio here, I'll start with Bridgette.

I'll ask both of our guests here, you know, Earl's talking about a time when it might have been called something different, but that intervention, you know, for a family that had been struck with polio was how do you even measure something like that?

So what comes to your mind when you hear a call like that, Bridgette.

>> What comes to mind is all the many, many stories I've heard in a very similar way here in Rochester and across the state.

And, you know, we're we're telling those stories to the governor, to the Department of Health, commissioner on given by parents and families so that they know we don't talk about it enough.

The impact on the individual child is enormous.

And that's what we're looking to you know, to really support as we move forward with reform in the E.I.

program.

>> Rachel, you want to add to that?

>> Yeah, I was struck.

Earl, thank you so much for calling in and sharing your story and willingness to to join the campaign and to uplift your voice.

I immediately thought of when you were talking, Evan, about just the broad bipartisan support we often hear from our Electeds.

I'm thinking about Assembly Member Josh Jensen, who often tells his story in the story of his children, about that he was engaged in in early Intervention and how impactful that was for for his where he is today.

and so that immediately struck up the stories.

Not only do we hear those who are currently engaged in the system, but those who have had incredible gains and impacts and, and many of whom are in elected office.

>> so I also want to say to and I don't know if Earl is still there.

Oh, I'm one other quick question for Earl.

I will say regarding Assemblymember Jensen, that Rachel brings up obviously Josh is a Republican that we mentioned.

This has really become a bipartisan issue.

He's not the only Republican that we've talked to who support increased support for E.I.

he's one of the most vocal, given his very personal story.

And I won't speak for Assemblymember Jensen.

Hopefully we'll have him back on this program soon to talk about a lot of different things.

but I will say, when you sit down and talk to lawmakers in 2025 and you get Republicans and Democrats who say a lot of the same things, you mark it on a short list of rare issues.

You go, oh, well, this one's going to be easy.

And then here we are where it's not getting done.

So that's why we're we're talking about this today, Earl, just briefly, you know, as someone who whose family, you know, had to deal with polio, it seems like the more decades that pass and you get away from something like that, as with a lot of society's problems that sort of fade in the rear view mirror is easy to take for granted, that they are no longer anything to be insulated from or to worry about.

And I wonder what in particular, given polio in your family, what that has been like in the conversation about polio vaccination.

And, you know, the way we prepare kids for the world, what has that been like for you?

>> Well, I would say we don't talk about polio vaccination because we all know and they don't want to bring out URLs.

Rage against.

and but my fear is that with the current administration and the current, you know, director of HHS, that we could be in trouble again.

And not only did I lose my mother, whom I never knew because it was I was seven months old.

but we lost a cousin, one of my cousins who was an infant as well.

So what I hope is that, you know, we can have real.

And this is the only one of the only ways that I can be real to the rest of the world with maybe some impact, right, is to say, hey, here's my story.

This is why, you know, and you've seen me, Evan, you didn't know what was going on.

But this is the way I walk, the way I do.

This is the way my health has been impacted.

This is the way I'm deteriorating slowly at my current age.

But here's what we can do.

Because I don't want any other kid to go through something.

Whether it's polio or anything else that's mildly preventable.

to to have to go through that route even when there's help, it's enormously hard.

>> Well, I really appreciate you calling the program.

The polio question was kind of adjacent to discussion, but not really to your point, Earl.

I mean, whether it's polio or other challenges for for kids that are very, very common today.

the question is, are we doing a moral duty and are we doing is the government doing its legal duty?

So that's what these conversations are about.

There is that lawsuit.

If you just joined us, that that could put pressure on New York State to, to increase its support for early intervention.

E.I.

We've been talking about but it shouldn't be controversial politically, based on the conversations we've had with people in actual political power.

So it's a conversation about what comes next here.

And we're going to come back to your phone calls.

We've got more phone calls to take more of your emails.

And we're talking to three of really the experts in the field.

Zareen Kamal is on the line with us, a policy specialist at start early Illinois, sharing the perspective of another state and the power of E.I.

programs there and really everywhere.

And in studio Rachel Bonsignore is director of Lift Off Western New York, and we're talking to Brigit Hurley from The Children's Agenda, the chief program officer.

We'll come right back with more of your feedback next.

>> Coming up in our second hour, the hypothetical snap cuts are not hypothetical anymore.

The USDA put up a note on their website saying that the well is dry, and that November 1st snap runs out for about 40 plus million Americans, tens, if not hundreds of thousands of people in our region alone.

So what happens next here?

And can there be enough of a stopgap from the community to fill this need?

We'll talk about.

>> It.

>> Support for your public radio station comes from our members and from bond, Chinook and King, a multi practice law firm in Rochester with offices across New York State serving business, health care and educational institutions.

Online at ebsco.com and The Golisano Foundation.

Supporting Move to Include programing on WXXI and working with the community to lead change toward the inclusion of people with intellectual and physical disabilities.

Share your thoughts at Move to Include.org.

>> This is Connections.

I'm Evan Dawson.

let me get Sarah in Eastern Detroit on the phone next.

Hi, Sarah.

Go ahead.

>> Hi, Evan.

I know there's really not technically a West and east, but he said west, so.

>> We got Oliver.

Rhonda covered.

There you go.

>> well, thanks for taking my call.

I I'm lucky enough to work at a cooperative preschool, and this year, we're partnering with the Children's Institute to do some ready to grow screenings through some generous grant funding for our children.

And it's been really exciting.

And so I just want to, like, toot the horn of Ready to Grow for for people who live in Rochester.

but also to the point about, moving the care, moving E.I.

from the health department to the department, one of the biggest hiccups that we see with our preschool families is the the transfer of care from the county to the school districts, different school districts have different processes.

And it can be it can be super complicated, or it can be as easy as a phone call to get started.

And so I'm just I want to throw my hat in to say that I love the idea of it moving to the department so that it's all in one place, because families get really confused about like, okay, my kids too, but they're almost three, you know, so they they have to start in the county.

But then sometimes the county says you should just wait till they're three and go with the school district because it's too close.

So just kind of having it all in one system makes total sense.

It feels like a feels like a duh for me.

>> and before I let you go, Sarah, the idea of, well, just wait till three, it'll be easier.

One of the lessons I think we're hearing from Rachel Zarin and Bridget is that these are really delicate times, and that there's a reason that it's supposed to be 30 days or less, that you're supposed to get an answer and waiting 11 months or waiting nine months or whatever the case may be.

could have real cost for kids.

Not only now, early in development, but throughout their lifetimes.

Yes.

>> For sure.

And especially sometimes kids will have one provider through the county and then when they age out of that program, they get evaluated through their school district.

They get assigned a different provider.

And so now, you know, a child as young as two is learning two new adults in the span of 12 months and trying to get comfortable with them.

And having it all in one place really makes a lot of sense to me.

>> Well, that's a very strong endorsement.

And from East Irondequoit.

Sarah, thank you for the phone call.

Appreciate that.

thank you to Earl and West, Sarah and East.

And for really getting a lot of great feedback this hour.

I'm sure that's no surprise to our guests here.

They know that people are really plugged into this.

So let's talk about what comes next here and what you want the state to consider.

possible study here.

So let me start with Bridget.

What do you want to happen next.

>> Sure.

So I'll just start out by saying there's no excuse for what's happening right now in New York's early intervention system.

And everything I'm about to talk about, and that we have talked about is complicated.

And it's, you know, the next most important thing that we should do for our kids and our families and honestly, for the future of our community and state, even in terms of their budgets, because it's so much more expensive to deal with these issues later on in life.

So just having said that, there's a couple of things that we think the state could really look at in terms of doing a different, taking a different path in terms of delivering E.I.

services.

And this this is all, by the way, in addition to current providers and the current system.

So right now in New York State, the person who delivers your PT services to your, you know, ten month old has a doctorate.

and that's terrific.

We want the best, best services for young kids.

Given that there are, you know, how many number of kids waiting for that service?

there are some children who could be served with a DT assistant or a speech pathology assistant.

So we're recommending that New York State look at bring in some other providers and provider types.

And, you know, allocate them based on the child's needs and that way expand the number of services that are available and reduce the waitlists.

There's also completely different models.

So right now in E.I., a child is deemed eligible after an evaluation.

The county helps them identify providers half the time the county says sorry, no provider.

So what we're saying is it doesn't always have to be an individual provider.

Going to an individual child's home or child care center.

it could be a team that often children need more than one service.

So let's say the speech, the PT and the OT work out a plan whereby they don't each go to a child's home once a week or every other week.

They deliver.

They may share delivery of services with one of the providers, the providers being a leader of the team, it's very common in other states.

It again reduces the waitlist because it enables there to be more slots on their schedules just to be, you know, to be really explicit.

so we're recommending that and then again, back to the engaging with families we always think is the most important way to find out what needs to change and to come up with a brilliant ideas of how the E.I.

system could be changed.

And they need to be brought into the the conversation.

>> Okay, Rachel, what do you want to see?

>> Yeah, I think there's also an opportunity to focus on the pipeline of those wanting to get into the field.

Right?

Those that want to go into speech language pathology or occupational therapy.

I have the honor of teaching a class at at Nazareth University and work very closely with students who are going into this field.

And what we are hearing is that what would be really great is to see some loan forgiveness for those that want to go into the field, have a deep passion for working with infants and toddlers, and having that opportunity to go into practice with a little bit of extra support.

As we think about going into your your first career and thinking about all of the different you know, loans that you may have to give a little financial support and stability to those that are entering the field.

And so having that loan forgiveness, and there's actually a bill out there that we are actively championing I think is is an opportunity to not only focus on the current providers, but those that want to get into the field.

And what is that extra incentive that can get them kind of across that finish line and getting kids seen?

>> So how much traction for this idea?

>> There's actually, you know, interestingly, there's there's some we in western New York, we have some broad support and there's a bill that is there that we we know folks are actively championing.

In fact, one of our Republican senators provided a letter of support in this past budget that was calling on the loan forgiveness as as an opportunity to to focus on getting more people into the field.

So it's getting some traction.

Probably not a lot, but it's an opportunity.

And we we know that there's some demonstrated success with other fields of practice, whether that's doctors or nurses too.

So there is some precedent there.

>> Let me turn to Zarin, because sometimes we get down in our rabbit hole not realizing that there's challenges everywhere.

And some, some states seem well, not every state is 48th on the list like New York is in terms of timely delivery of E.I.

services.

But there's challenges everywhere.

Zarin how much do these these conversations sort of ring true in Illinois?

Do you feel like you're ahead in certain ways behind in others?

What's going on.

>> Yeah.

You know, I think while we do acknowledge the need for systems improvements and the new early childhood department is prioritizing that, and we're grateful for that.

We also don't want to lose sight.

as we've talked about for of the need for more funding and really significant investment in the program.

So it really needs to be a both and I think and, you know, it's important to acknowledge that our state has heavily invested in cross-state research, in cost modeling to show the need.

and so there was a cost model study just recently done, commissioned by the state done by Afton Partners, which shows that the state must invest $168 million more annually in the program to cover the full cost of delivering services.

and that includes increasing provider rates by an average of 95%.

And so, you know, when we think about all that, it's really we we need to keep fighting for, the money, and it's going to take all of us.

I think that's a lesson that we've learned is we can't do this alone.

And so it's really going to be the collective advocacy.

And we've we've seen families really step up to lead the advocacy.

We've seen providers engage in the advocacy families have started a Change.org petition.

There were nearly 3000 signatures last year that were sent to the governor's office.

There's been a ton that's been done to call for additional funding.

And so this upcoming year, we're asking for an increase of $40 million.

in the program and for the governor really to prioritize that in his state budget proposal.

>> So there's a view from another state there.

Let me grab a phone call from Heather in Chile on the subject of children needing E.I.

services.

Go ahead.

Heather.

>> Hi.

So sorry, I was just outside.

yes.

I'm just calling in.

My son has been receiving services since he was about 18 months old.

through through E.I.

at his daycare.

they would go to his daycare to provide him with his services.

And then then he went through the Boces program.

and unfortunately, I mean, luckily, he's he's just leaps and bounds.

He's he's able to speak, he's able to communicate so much better now.

He had a lot of developmental, like biting things of that nature, which his ability to communicate better has really helped.

decrease those as well as him turning four years old just yesterday.

but beyond that we're noticing that there's a lot of changes happening here on the West Side to where I guess I'm not really certain what's occurring.

like at the organization level, but I do know that two of his providers moved over to the East side, and there was a huge change with the president and everything, and it's just very challenging to actually get kind of through to anyone to get guidance or determine, you know, what our next steps to to help him with his services, because he actually currently does not have he should be having PT, OT and speech and they get music as well there.

But he does not have a provider for he only has speech right now and, and it's very disappointing because you know, he needs these services right now to determine if he can go, what kind of classroom he could go into possibly next year or the next the year after that.

so it's just it's very scary.

And I guess I don't know what the answer is.

I'd love to know what's going on.

but I feel like this is happening here just in our community, that folks are not maybe really aware of.

>> Well, first of all, happy birthday to him and good luck to you, Heather.

Thank you.

Rachel, Bridget, you want to jump in with some ideas on what you can do there?

Go ahead.

>> Bridget.

So first of all, I would just say that, I'm sure that she's feeling it in her own community, but it is, you know, it's true in every community in New York state, with few exceptions.

And I would suggest it sounds like if he's three, that he's actually in preschool special education, which is very similar to E.I.

And it would be working with your school district.

>> I think he's just turning four is what she said.

>> So he's so he's three.

So E.I.

ends when the child turns three.

And so he's probably in preschool.

Special ed.

>> Right now.

Gotcha.

>> Yeah.

Regardless, reach out to the folks who are who are, you know, administering the program that he's engaged with.

Very happy to talk with you more.

we're at the children's agenda.

and we have lots of partners locally parents and providers.

And I'd be happy to talk more about it.

>> Anything you want to add there, Rachel?

>> Yeah.

And again, happy birthday to your son.

And happy Labor Day to you, mama.

I think what Heather shared is is, is very common about receiving some services, but not.

All right.

Talking about the communication support, the speech, speech, language support, but not having the full the full menu.

and we see that communication is one of the, the, the most demanded services that we see in the E.I.

program.

and so that certainly speaks to what we're hearing and seeing from the North Country to Central New York to New York City, Western New York, and everywhere in between is that some kids are getting some services, but not all services.

And there's a few different root causes to that.

and certainly the provider availability is one of those but certainly Heather's experience is very common that we see that not everyone is not all children are getting everything that is required in their isfp.

For an example.

>> Well, as we get ready to wrap here, what is realistically the best the next 12 months, the best outcome for this state?

What do you think could actually happen in the short term here, Bridget?

>> Well, you know, I think big.

So it's a little hard to say.

in the very best, of course, would be a fully funded preschool or, excuse me, early intervention program with all families and kids getting services that they need.

bringing it back to reality, I think given the next 12 months, I would say this is the time for the state to commission this study.

It's not does not cost very much money for the state to do the kind of study we're talking about.

It would be a way to continue to make progress on improving the program without perhaps the dollar signs that the Division of Budget sees when we talk about rate increases.

>> And sometimes people hear studies and they think, well, now we're just kicking the can down the road.

It's going to take years and years and years.

My read on this is this is a study that will actually sharpen the focus on the kinds of actions that will make a difference sooner than later.

Yeah.

>> Yes, absolutely I do I shouldn't I should say though, our ask for the budget this year is not another big increase.

it is that 5% rate increase that's stuck at the federal government at the federal level.

We say New York State, at least fully fund your piece of it.

All of the rates in early intervention are funded by state and federal government.

And New York State should at least provide providers with their portion of that rate increase.

>> Okay.

20s Rachel, are you an optimist that some of this will happen?

>> I am, I am I think that there's an opportunity.

I think because it is the time where we have to get creative, we have to get inventive, and there's no time like the present to put our cards on the table and explore every single possibility that is driven by community and parents and multiple perspectives.

And it's an easy win.

It's an easy win that's going to give us long term gains.

>> Well, we learn when we kind of understand what's happening in a lot of different places.

And Zareen Kamal has been generous with her time as a policy specialist at Start early Illinois.

Zohreen, great talking to you.

Thanks for joining us on the program today.

>> Thank you so much for having me.

>> Rachel Bonsignore.

If people want to learn more about Lift Off Western New York, where do they go?

>> Liftoff WNY.

>> And if you want to learn more about The Children's Agenda Brigit Hurley.

Where do you go?

>> The org?

>> Bridget's the chief program officer there.

Thanks for being with us this hour.

Thanks so much.

And Rachel Bonsignore, director of Lift Off Western New York.

Thank you for being here.

>> My pleasure.

Thanks, Evan.

>> More Connections coming up in a moment.

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