From Sky news.

This is connections.

I'm Evan Dawson.

Our connection this hour is made with conversations happening at the national level, conversations about possible cuts to Medicaid that could have sweeping effects on children and families.

Now we're still learning more about what could happen and when and who specifically is affected.

But questions loom about what it means for access to health care.

Rochester is home to a number of resources and organizations that support families with medically fragile children.

Those resources can be a lifeline for families who find themselves in unpredictable or life threatening situations.

Leaders and families associated with Ronald McDonald House Charities of Rochester say that now, amid these national conversations, their organization's work is more critical than ever.

And this hour, we're going to talk about what that work is doing.

We're going to talk about how that work bridges gaps for families in need, both historically and in the future.

If, well, if they're able to keep doing this work at the level they want.

And we're going to talk about how they're expanding some services as well.

So a lot to talk about.

Let me welcome our guests now.

Joanne Ryan is president and CEO of Ronald McDonald House Charities of Rochester.

Welcome back.

Thanks for being on the program today.

Thank you so much.

What be back.

Welcome to Carol.

Guess who is CEO of Finger Lakes performing provider System and a board member for the Ronald McDonald House Charities of Rochester, New York.

Thank you.

Thank you.

Welcome to doctor Neil Herron Dean, who is professor in the Department of pediatrics at the University of Rochester Medical Center.

Doctor Herron, Dean, welcome.

Thank you.

And welcome to Dan Miller in studio with us, the longtime volunteer and a former board member for the Ronald McDonald House Charities and State of the House when his son was born.

Dan, welcome.

Thank you for being with us.

Thank you.

And I think we've got Desiree Washington out with us, a mother who stayed at the Ronald McDonald House.

How does Ray.

Hi, everybody.

How are you?

Good.

It's great to hear you.

Thank you for making time for us as well.

I'm going to just take a step back and start.

Make sure that everybody understands in particular, when we talk about Ronald McDonald House Charities of Rochester.

Joanne, just what's the elevator pitch on what your mission is these days?

Our mission is to make sure that we keep families close as their child is in the hospital receiving care.

So anyone who has a child 21 and under who is in a hospital, that has the ability to receive care in this region through Rochester Regional Health or UMC Golisano Children's Hospital can stay with us, and we're proud to provide them support while they're there.

And you're going to hear some of the the kinds of stories and the direct impact that happens this hour.

I was asking before the program, and I'm going to ask Carol, take us just briefly when we talk about these national conversation about what's going on with health care, what's going on with potential cuts.

What I, what I want to do is just understand where we are now and realistically where we may go not to try to alarm or be overly speculative, but to be direct about what we're seeing.

And so the question I had was, might you be might this organization be affected?

Might families in this situation be affected?

What's the answer to that?

Yeah, I do I do think they'll be affected.

right now there's a great amount of fear, a great amount of confusion.

So just that in and of itself affects the families who are already stressed.

those who have medically fragile children who are, experiencing really life changing, happenings and health care in their families.

And, a lot of these families have, Medicaid as their insurance.

Some are medically, or uninsured.

And any cuts to Medicaid is going to have a great impact on not only their stress, but the ability for them to, financially care for their children or their child.

That's, in the house.

and it's it's really important for people to look at the facts, listen, try to clear through all the noise and focus on what the facts are, and really collaborate and work with trusted organizations and partners who can clear the air for them and help them understand what's happening.

But the leadership in Washington is saying that they're targeting waste, fraud and abuse.

They're not targeting the people who need Medicaid or services the most.

What do you think?

I think the unintended consequences of the targets that are happening are going to impact everybody who actually needs it.

I think there's an overarching kind of clean sweep that they're trying to do, and I'm not convinced that they're actually targeting who they need to target, and it's going to impact more than just those who, really they need to target for fraud, waste and abuse.

and unfortunately, that is, a reality that we all have to face and that we need to manage.

And the only way we can manage that right now is locally partnering with each other, organization and partnering together and trying to get to the truth and working with our delegation on understanding what that truth is.

Joanne, do you share those concerns about what's going on?

I do, and I think we have to be really proactive.

So we have to really be as thoughtful as we can about the services that we can provide.

And we have to be really, forthright about how we can be really, reaching out to our community.

So philanthropy, we are 85% supported by our community.

And it's a very generous community.

And thank goodness for that.

So our services that we provide are covered because of that.

And we are never turning a family away.

So we are able to provide all of our services as a result of that kind of generosity.

when families come to us from our local region and from beyond, we are able to keep them in our house for as long as they need to, for as often as they need to come.

Desiree, who has joined us today, was able to stay with us for 218 days.

And that's an amazing number of days.

But the beauty of that was that was through the generosity of many individuals who were able to help with that.

Yeah.

I mean, I think the reality right now, Joanne, is organizations like yours, organizations like Sky, I'll just mention ours.

We don't we don't rely on government funding for the bulk of what we do.

It's not it is not it's not the majority.

Not even close.

It's significant.

And if it goes away, we're in a spot where we will be able to continue doing what we're doing.

If the community comes forward and fills in those gaps, and if not, it's hard to contemplate.

No one wants to contemplate.

I don't want to.

I suspect that the Ronald McDonald House charities, you don't want to either, but that may be the reality.

Is that fair?

That's fair.

And we have to always be thinking that way.

So what we are trying to do too, as well, is making sure that we are always providing value.

And we look at what we do now and we measure it by data.

We know that we are impacting outcomes and that's what we do.

So we are we look at it from the regard of the quintuple ehm, we are increasing quality.

We are decreasing cost.

We are impacting the family, the experience, we are decreasing the clinician impact and ultimately burnout.

And we are also clearing barriers to care.

So all of those things can be measured and they do impact outcomes.

And so as a result of that we have value.

And that's that's how we are actually telling our story.

And Carol, just building on Joanne's point about advocacy and speaking up now, trying to be proactive and not just wait and seeing what comes down the pike.

in that way, I want to ask you what you see is maybe the worst case scenario.

And I'm talking about families that need are sometimes in desperate circumstances.

So families that you're uninsured or relying on Medicaid, what what, in your mind is a plausible direction that we're going that you don't want to see a plausible direction is that, Medicaid is, you know, cut even further.

more, people become uninsured as more people are uninsured or Medicaid rates are cut.

There's going to be more people who are hitting the emergency room, who are going to be in the hallways at the emergency room, who are going to be in those inpatient beds, not allowing for the, care to be delivered in an efficient and timely manner.

There's going to be much more pressure on all of the community based organizations that are surrounding the health care system that provide those supports.

There's going to be more pressure on philanthropy to make up the difference.

luckily, in our region, we've got a very, very generous, community who will step up.

but there will be pressure and, it's going to hit every one of us, not just the, the most vulnerable.

And so we have to come together at the local level, work with our delegation, work with the congressman, who, represents us and understand what the facts are.

Understand what advocacy we can do at the local level, collectively put those signatures on those letters, make those phone calls, and in the meantime, support the community based organizations who are supporting the families who are affected.

But, Carol, you've heard you know, this administration, the national leadership in Congress, essentially say that what you just described that's not coming.

That's not happening, that do you think there's a disconnect in understanding?

Do you think they just don't understand?

I think they don't understand how health care works.

I don't think they understand how the nonprofit community works and how everything is so interconnected and dependent on each other.

And so when you make a cut in one area, there are ripple effects that ultimately impact the economy and the workforce.

And they're very concerned about the economy and the workforce.

But the unintended consequences of what's happening in areas that they think don't impact those other areas actually do.

I think that there's a laser focus on just cutting.

And, you know, I understand, there need to, abide by whatever they promised.

but at this point, I think they need to focus on, cleaning areas that really, you know, are proven to have fraud, waste and abuse.

And right now, Medicaid really needs to be secure.

Social security needs to be secure.

The safety net for the most vulnerable population needs to be secure.

There are many other places that they should be looking at right now.

Doctor Harrington, do you want to start by describing a little bit of your relationship with Ronald McDonald House charities?

And then we'll talk a little bit about what you see happening now.

So we are a children's hospital.

We're equal partners.

So our kids that are in the hospital rely on family support through Ronald McDonald House.

And we were very lucky early on to have a home, Ronald McDonald House within the hospital itself, one of the few in the country.

We also have the center that's on West Marlin Road.

So we've got a lot of resources there.

The new thing we're trying to provide is ongoing support.

After the child leaves the hospital, after they've checked out of random McDonald House.

Those families still need that social and emotional support, and the children still need follow up care.

So if we want to talk about premature babies, as long as they have to stay in the hospital, whether it's three months, four months, a long time, there's still an ongoing need for their very close follow up care for the next two and a half, three, 4 or 5 years.

So we're trying to develop a program that's really going to allow families to stay connected, to be able to reach some of those needs by not having them come back into the hospital, necessarily, but using telemedicine, using the mobile van to come out and make sure the families are still receiving those supports that they need, because most of those kids, they're going to be back in the hospital.

It's very rare that you can leave the NICU and never come back in the hospital again.

Part of a Doctor Harrington's talking about is the house to home mobile unit, I think, which is launching soon.

Yes.

Launching when?

April 14th.

April 4th.

Okay.

And what exactly is going to happen there?

So for that, we're going to really focus in on children with special needs and medically complex kids.

So the kids with technology dependent at home, they're going home with oxygen.

They're going home with tracheostomy, ventilators, g tubes, a lot of equipment, home nursing care of involved.

These are the kids that we're spending a lot of time trying to keep them home and avoid the emergency room, avoid coming back in the hospital.

So having a mobile van that can then go out to their home directly connect back to us virtually through a telemedicine program is going to help with that transition.

And it's always a transition, whether they're scheduled to come back in in three weeks for another surgery or we're going to try to keep them out as long as possible.

the goal is making those transitions actually work.

And some of our babies have been back in the emergency room within 24 hours after leaving the hospital.

We want to avoid that doctor here.

Do you share the concern that your co-panelists have that there could be families, there could be children who can't get services in the near future because of what's going on.

Well, we're only two weeks away from deciding whether telemedicine is going to be still be supported at the Medicare level.

Now, Medicare is not what we deal with for children, but those policies do carry over to Medicaid to state policy as well.

So we were lucky during Covid that a lot of the restrictions were lifted because we had no other choice.

We had to do virtual care.

Now we're back to without the pandemic being as forefront as it has been, we're back into what's going to be the restrictions.

Who's going to be able to to do that for our kids with medical complexity, it makes a big difference whether you have to pack up your child with a home ventilator, with your home nurse to come into the hospital for an outpatient visit, which may only take a half an hour.

It's an hour and a half just to get here and back, and we're covering all of the children in Western New York.

We're not just looking at Monroe County.

We've got a number of kids that leave Golisano Children's and go back down to the Southern Tier.

We'll go as far as Albany.

We're covering those kids as if they're our own patients.

Let's get Dan and Desiree stories.

I think that'll help illustrate what the work is here.

Dan is a longtime volunteer and a former board member for the House charities, and stayed at the house when your son was born with complications.

A little bit of love a few years ago now, not just, nine months ago.

Nine months ago now, we were in, a neighboring hospital, and he had a new and more pneumothorax.

And, we had to go to the listeners in order to get him the proper care.

And that occurred the the evening of the day.

He was boring.

Boring.

So we, you know, had that complication of what are we going to do?

And we live down in Livonia.

And, one of the social workers came up to me the next morning when I woke up and, offered me a room at the Ronald McDonald House and for my wife and I, and, you know, it was just, I was I was kind of in the moment.

I was caught off guard.

I was like, well, wait a minute.

No, I'm supposed to help the people over there.

And that's what I do.

And all of a sudden I was taking advantage of the services that, you know, everyone here at this table and everyone is supported for a or so.

it was a breath of fresh air was, it was an easy.

Yes.

I think they said I got the presidential treatment, not to get into your conversation and politics, but, but no, it was just, it was peace of mind knowing that we were going to be able to do that.

what do you think the difference is in a service like this, if it doesn't exist for families versus the experience that you have?

I just I think that stress level that people have about worrying about their kids and then having to get home to their other kids or to, drive 2 hours or 1 hour and it just takes all that away.

Most people don't understand it until they're in the house.

And, and all of a sudden they're like, oh, wait, our meals are here.

There's games for the kids, there's toys, there's people that will do anything to help us.

Others transportation to back and forth to the hospital.

so it just it takes away the fears of everything else that you're trying to manage as a either a young parent or older parent and, and try to get through that.

It's it's taken care of for you.

And, and if they don't have it, they'll figure it out.

I mean, it's, it's amazing to watch the team that, is over there and what they do for their families and, but you don't need that stress on top of worrying about your young one.

Well, I mean, certainly people like you and me are not experts on the kind of care needed.

Yeah.

You know, and so there's a lot to learn when you get a diagnosis that maybe you've never even heard of.

and it's got to be tremendous peace of mind to know that you've got that kind of a resource.

Can you describe a little bit about your son and how he's doing now?

he's doing phenomenal.

He, spent seven days in the, over at Cosigners, the doctors, the we had two different actors we worked with, I believe, doctor C.J.

And Doctor Tyson, probably 20 different nurses over seven days because they run long shifts, but they're in and out.

Every one of them were phenomenal.

the, the support there is, is, I mean, it equals the Ronald McDonald House.

They're just there to take care of you.

So, but the, the hard part is, is that Golisano has tons of kids coming through there and that all the parents even know about the services available.

Yet.

One thing you didn't mention, Doctor Harrington, is the family room and just having that downstairs in the hospital to be able to go take a break or take a shower if you need to, rather than going back to the house or a hotel that you're at.

there's a number of programs that have been implemented over the last, really 20 years at the Ronald McDonald House that are connected to the hospitals that support the families.

And I think awareness is another piece just even in the hospital for the nurses to know, hey, send someone downstairs or, you know, take advantage of the, you know, the carrots and those kind of things that you've set up.

So, and I think as Dan and Desiree share their stories, if you're watching along on the WXXI news YouTube page, we've got some photos of the family to share.

And, you know, again, pretty remarkable stories, all things considered, the challenges for these kids and for these families and, you know, so far, so good.

Then he's doing great.

And I'm still volunteering at the Ronald McDonald House.

So.

Yeah.

actually, Levi volunteers everywhere.

I think you run.

He runs the office when he's there.

You're smiling over there.

I mean, these are the kind of stories that you probably have countless now.

It's amazing.

I mean, you know, the thing that I've often heard staff say when families are coming in, they'll often say, just breathe.

I mean, families are coming at probably the height of chaos.

They either have received a devastating diagnosis or their child has been critically injured, and they find themselves in this midst of uncertainty.

And they walk through those doors.

And we've had families say, you come through the doors and it's like a vortex.

Everything just gets sucked away.

And now you can just focus on your child and have the staff say, we've got you.

Just breathe.

Is is really what happens.

And they put their arms around this family and they hold them up while they are there to care for their child.

It's an it's an amazing experience.

It's just it's, it's I'm really one of the luckiest CEOs in Rochester.

And I watch this every day.

Doctor Harrington, can you also weigh in a little bit before we get to Desiree's story just on, you know, working with families who are going to get, for the most part, are getting diagnoses that they probably never considered, weren't prepared for.

Maybe, maybe never heard of, and the challenge of making sure that they're, well, taking care of the whole family is not just the child.

Yeah.

I mean, nobody ever prepares for a medical crisis.

Whether it's prematurity, accidental, cancer diagnosis.

That's nothing any of us ever want to hear.

And when you get hit with that news, it pulls out the rug from under you.

So you may have all the family support in the world, but you're not going to leave the bedside.

You're not going to leave that proximity to your child, because that's who's also feeling the effects of all of this concern, the stress.

They see the tears in parents.

They see the doctors worried expressions.

The kids understand what's going on.

They need that support as much as they need the proper medication and, you know, care.

Like keep going back to being able to provide for families in crisis medical care without the stress of thinking, well, tomorrow they may be no coverage.

There may be.

And I you know, there's probably a lot of people listening who've had a similar experience.

But I have a twin brother who broke his leg terribly 15 years ago.

I mean, such a bad break.

The doctors I I've never heard a diagnosis of just a broken leg that bad.

And, he was in his hospital bed.

They brought him a pill the next day for $75,000.

And he said, well, this is a different situation.

It was, it was around the time of the ACA.

The ACA hadn't passed.

he was told it's going to be easily into the six figures.

Rehab.

And he said for 48 hours he thought, well, this is it.

Like my life's over.

he got it taken care of.

It turns out he wasn't cured.

That uncertainty said, was almost worse than the injury.

And I can't imagine what it's like for families to get a diagnosis.

The kind of the doctor hearing, describing and then think, well, I don't know if anybody can help you.

Exactly.

You're out.

You're on your it's it could be in the hundreds of thousands of dollars.

Yeah.

And you know, it's not going to be any cheaper.

And, it's really important, that families are insured, that they keep their insurance, that those who, you know, make below the threshold are covered.

it is it's devastating.

And people will become, destitute and go into bankruptcy because of an accident or because of and diagnosed and all of a sudden diagnosed, medical situation.

I just can't even imagine what would happen.

We ourselves, have, a nephew or our nieces, child who went through, the Ronald McDonald House in the hospital.

And our family, who is quite privileged, would have never been able to, to make it through without the support of everyone at the Ronald McDonald House.

and, and just, you know, taking that relief off of the worry and being able to manage the other child and take turns and, stay at the hospital, not drive all the way to Ontario, where they live.

It's incredibly important, for the community based organizations in our region to be able to support the families and for those families to have health care coverage after we take our only break the hour, we're going to come back and hear Desiree story, Desiree, his daughter, and, you just reading some of the details.

Pretty harrowing stuff, but also emblematic of the kind of work that happens with this organization.

And, so we'll hear Desiree story and we'll we'll continue the conversation about the current state of, of care in this way.

Joanne Ryan is president and CEO of Ronald McDonald House Charities of Rochester.

And you just heard Carole Tagus, CEO of Finger Lakes Performing Provider System and a board member for Ronald McDonald House Charities of Rochester.

Dan Mill Gate is also a former board member and a long time volunteer, and was talking about his own son story.

just in the last year here and doctor Neil Herron, Dean, professor in the Department of Pediatrics at the University of Rochester Medical Center, talked to Desiree Washington and her story on the other side of this only break of the hour.

I'm having Dawson Wednesday on the next connections.

In our first hour, Democrats are debating the state of their leadership.

Are they happy with, for example, Senator Chuck Schumer and others?

Should the party change directions?

They'll talk about it.

Then in our second hour, a couple of upcoming local business conferences and the leaders are talking about D-I and pushing back against criticism of D-I.

Talk with you Wednesday.

Support for your public radio station comes from our members and from Excel.

Is Blue Cross Blue Shield, with a mission to address health inequities by building up communities and breaking down health barriers.

Excel US Blue Cross Blue Shield everybody benefits more at zealous bcbs.com.

This is connections I'm Evan Dawson and I want to bring in Desiree Washington who is with us on the line, a mother who stayed at the Ronald McDonald House.

I think, Joanne Ryan was telling us, how long does race day?

218 days, 218 days.

And, you know, until you're doing it, that's not something you ever expect to be doing.

But, Desiree, I want to give you some space to tell us your story and, and take us through what happened.

Yes.

So, like, Julian, but I, I'm staying there for 218 days, so, but being there for that long, I ended up utilizing quite a bit of the resources that Ronald McDonald House does offer.

and prior to that, 218, they say I actually utilized the house within for, I think it was about 2 or 3 days, because I had some issues with my pregnancy at 23 weeks as well.

So, you know, my daughter was born with a ultra rare genetic mutation.

She's, I think the last we checked, 1 in 26 of the entire world.

So if you think of all of the billions of people on this planet, she's one of 26 of those people.

and her dad is on, another one of those people.

She has an exact copy of that.

so, when she was born, she was diagnosed with hyper tone.

Yeah.

Which is little muscle tone.

and it greatly impacted her, ability to breathe and keep her lungs open.

Her trunk muscles.

so it's essentially a lifelong thing.

and my daughter is very much one of those children that, they're wanting to utilize, the, house to home, service for.

She's due to, she's that, dependent, throughout the day and that night and, you know, we we have a lot of medical things going on here.

Part of speech therapy.

you know, if she's a miracle, for sure.

but, you know, single handedly.

Ronald McDonald House got me through, some of my very hardest times, during that journey.

And tell us what your daughter's name is.

Does Ray.

Her name is Mary.

And how old is Amari now?

Amari is 14 months.

She'll be 15 months soon.

Okay, just reading a little bit more about the g-tube feeding, and relying on a BiPAP ventilator.

But, you know, all things considered, showing remarkable progress.

Is that right, Desiree?

Yeah.

you know, in, in the beginning of when she was born, they, you know, we're not very sure at all that she even going to make it through the first 48 hours of her life.

so, it was pretty scary.

And it's it's absolutely insane to see where she's at now in life.

Wow.

Doctor Harrington, you went a little bit on about, maybe how what we know about a murray's condition and, you know, the challenge for a child dealing with that?

Well, it's the great unknown.

So there's a genetic condition.

All of the genetic testing we do half of the time when they come back with something abnormal.

We don't know what that means.

We haven't had enough time to put together one of 26 kids that have similar, symptoms, similar problems.

So we can't really give a great prognosis.

So we're going home with optimism.

We're going home with hope, and then we're putting a lot of responsibility to then follow up on what's going to happen in the next few years.

So the NICU doctors are well aware of that stress that we put on parents, and trying to then make it an easier transition, but also keeping in contact.

So we have a developmental team that wants to follow all of our preemies that are super, super small like that all the way up until kindergarten.

Then we'll hand them off to the school system and see if we can kind of maximize their potential, but not wait for parents to recognize.

Like, so what are they supposed to be doing at 15 months?

Do I subtract four months for prematurity?

So do I treat her like a one year old?

When can I start to maybe think about feeding her?

Well, her respiratory her lungs aren't able to do that.

Her muscle tone is not able to coordinate a swallow.

But parents are like, but she's old enough.

She should be taking a bottle.

She should be doing a lot of things.

So it's a lot of that transitional and comprehensive follow up care that we're really trying to do better with our parents.

can you describe Jessica again?

How small?

What was her birth weight?

Pounds 3.4oz.

And she was born at 32.

Yeah, 32 weeks.

And I'm sorry you cut out for a second.

What was the weight for?

Pounds 3.4oz.

So that's in the preemie category, doctor.

Yes.

And again, it depends on who you want to talk to and how premature you have to be.

But we're starting a new program for our smallest preemies.

And they're looking at under 28 weeks gestation.

Under 1000g is the most fragile.

So we think 32 week preemies are big babies.

But again not when you're in your world.

Yeah.

The genetic conditions, the other heart problems, the other things that can go wrong that really makes for a fragile baby and 1000g.

You mentioned pretend for a moment that I'm not good at gram to pound.

Okay, so that is 2.22.2 or fit in your hand.

Amazing.

Two cans of Coke.

Oh my gosh.

let me just read a little bit of what Desiree said too, about that experience, if I could.

And then I'll have Desiree elaborate.

Desiree says my first night, that was overwhelming.

I had just undergone a C-section and was recovering from magnesium treatment for my blood pressure.

With my baby in the NICU, I arrived at H with nothing but the clothes on my back and slippers for shoes.

However, the warm reception, the kindness and the support I received were unparalleled and again ends up staying in arms for months.

So, what do you remember most about that experience now?

Desiree?

I think Jillian, described it pretty well when she said it is like a vortex.

That kind of, like, sucked you in.

And it's this warm, fuzzy, wonderful place.

It's almost hard to explain it unless you have lived it.

And, you know, I often tell people, I hope that you don't ever have to experience, something in your life that would have to have you utilize those resources.

But if you should ever have to do it for us was the most beautiful experience ever.

you know, there was a lot of unknowing.

we didn't even know if our baby was going to survive or be okay.

And, just that first night to go and meet these people who are also going through, you know, things with their children.

And it's almost like you have this common ground to stand on, and they just wrap their arms around you and just tell you it's going to be okay.

we're here for whatever you need.

they provided, you know, a hot shower or a hot meal, place to wash your clothes.

Because, like I said, I only had the clothes on be back because I had been transported via ambulance.

really, just just the most beautiful light in a very dark place.

And it just.

I think that was probably, the most amount of sleep I had gotten in like that because of everything that had been going on.

So, so, and did you ever have to stop and worry about insurance or coverage or bills in this situation?

Desiree.

It was absolutely a thought that has crossed my mind.

and even more so now that, you know, there's all these discussions about Medicaid.

you know, I've, I've sat on the phone crying with my family.

How are we going to maintain this?

How are we going to do this?

And even when she was born, I mean, just imagine if somebody said, you know, your child has to stay in the hospital for we don't know how long the amount of medical bills that would be is, is astronomical.

and there are times I think, like, if I could see what that, that amount would be, it's probably insane.

but, you know, thankfully, I, we do qualify for, Medicaid and certain insurance.

I wasn't able to work since I was six months pregnant with her.

So, you know, it financially.

I've seen families who are very privileged to be in this situation, and it has impacted them, financially, very greatly.

So, it's not just, a select group of people, you know what I mean?

I mean, I, I'm not an expert on what every procedure in a hospital cost, but it's pretty remarkable how fast you move into six figures.

And even if you are quote unquote well-off, that, I mean, it changes everything.

So, and I also don't want to I mean, Desiree, I don't want you to have any anxiety about what's going on.

You need no more anxiety than you've had to deal with in the last year and a half of your life, and we certainly wish you the best.

I am curious to know, though, as these conversations happen in Washington, do you think political leaders just don't get it?

Do you think there do you think that they don't have enough information to be making these?

I, I'm curious to know what you think of why some of this may be happening.

You know, trying to, like all of this.

I never really, like, got into politics.

Really like that.

I'm very much, people person and just, you know, love everybody and don't.

I don't really just get into that because it can get so ugly.

But, you know, I've had to pay attention so much more closely now.

because it does it can directly impact my daughter now.

and I'm not sure they just don't understand, but, I just wish that I could take every single one of those people and give them a moment to live in the situation that we had to live in and live in the situation that we live in every day, where I have to worry about having enough medical supplies, is this going to be delivered?

Will I be I will my insurance cover this will not cover this because it's very, very scary.

I am to have a daughter that greatly relies on physical therapy.

Occupational therapy.

we've been very lucky to not have to go back to the nCCU, but, you know, going to so many appointments, to have to worry about that financially.

I just wish that they could have that for a moment because it's terrifying.

So I'm I'm not sure if it is that they don't understand, but if they could have that moment, it would very much make them understand.

Well, Desiree's point about, I wish they could experience this even for a day.

Even for a day.

It certainly that's a powerful point.

But shouldn't we be in a position where political leadership works hard enough to try to understand?

You know, it gets a little tiresome to have to require people to go through a real crisis before they understand what is at stake, because a lot of people in politics have never gone through what Desiree has gone through, or never had a medical crisis, never had a medical bills crisis, or faced medical bankruptcy.

or faced poverty, all kinds of things.

I just it's kind of wild to hear this.

And and this is part and parcel to, last month, listeners heard me.

It was pretty frustrating.

We talked about doge and cats.

I don't want to get too much into politics.

Our guests are not here to get overly political.

In fact, they serve everybody and they will always serve everybody.

just as we broadcast for everybody.

But we were talking last month about Doge, and, you know, the first month of this new administration, you got Jesse Watters on Fox News every night saying, who got Doge today and who got cut and laughing.

And then he opens up show after a month of that saying, I got a text from a friend and he lost his job.

And, you know, he was one of the good ones.

So let's show more compassion.

And I'm going, that's what it took.

That's what it took for you to show compassion.

A friend lost a job before.

It was funny.

Now it hurts.

Shouldn't take that.

That's all I'm saying about that.

and I, I don't know, bail me out here.

Let me let me and maybe Carol take this can bail you.

Yeah, I mean, I tell you, reading my mind, I mean, here in des Ray story, and I'm going.

I understand why she's saying, like, I would love for them, but there are so many stories now.

There are so many stories like that.

And every single one of us is one misfortune away from being one of those stories.

So it's going to be really important for us to collect those stories, to share those stories, to bring those stories to our delegation, to our representatives, for them, to bring them forth.

it's going to be the only way.

Everybody, it's the six, right?

Six, degrees of separation, right?

Everybody has a story in their family.

And if you put all those stories collectively, that is all of us, that is all of us.

So we will all at some point in our lives, maybe some of us are lucky enough for it to not happen to all, but all of us might be in that situation.

So we have to protect all of our families, all of our friends, all of our neighbors, regardless of their, financial situation or of their circumstances.

And that is what I think the government needs to focus on.

every single one of those people, that is working in this space to clean house or do a clean sweep or whatever it's calling.

we'll have a story.

It's just a matter of time.

Joanne.

Ryan, you want to add to that?

Yeah.

And I think in the meantime, we just, you know, we stay, we stay the course, we continue to provide excellent care.

And the families who come to us, they they need that.

They deserve that.

And while they're in our care, we do the very best we can.

And, you know, we are very fortunate to be in a community that does care greatly.

And we do have a delegation that does care greatly.

And, you know, we work very hard as a community.

It's an outstanding community for high level quality care, a very it's one system of pediatric care.

We're very fortunate to be in this region.

And what we are able to do here is provide, you know, a top notch care state of the art pediatric care.

So families, when they do come, they know they're going to receive that.

And Ronald McDonald, we are one of 400 chapters in 65 countries.

It's a global mission, and we are all empowered to serve our community where the where we are meeting, the needs that we find.

So, so here in Rochester, we we do our very best.

this house to home mobile unit is really it's it came to be because the need was there and the ability to work with Doctor Harrington and his team was because this continuum had to be built.

Up to this point, we knew we saw families that came to us that had this complex component.

And while they were under our roof, we could give great care.

But we knew they went home and then when they went home, what happened then?

So the comprehensive services that Doctor Harrington beautifully articulated are then we have wraparound services.

So what Ronald McDonald does through this mobile unit is provide meals, bringing DME out, providing mental health services through the telehealth and this, this supportive services that goes right to their home, that goes right into their home is very different.

It's the first of its kind in the entire Ronald McDonald world.

This is the very first kind of service provided that is cutting edge, that will be replicated.

The funding has to be there though.

So the hope is that by putting this out there, this amazing way to provide services that it can be replicated.

So maybe it's a little Pollyanna, but I think if we hold, if we hold the gold standard up high enough and we show that we can demonstrate something that is creating a pathway to excellence and care, it is something that will garner the attention of those that will want to replicate that.

How long can you do this with the current level of funding?

Well, what we've done right now is through a community of exceptional funding.

So the pathway that's been created has been created through that philanthropy.

So there has been there hasn't been any funding that has come through that has been dependent on state or federal dollars.

This has all been through philanthropy.

How many volunteers do you have right now?

We have probably about 300, probably over 300 volunteers right now.

300. and Dan Mill Gate has been one of them.

Yes.

He has very faithfully.

you know, during a brief break, Dan would say, you know, but we still need those volunteers.

So what's the message that you want to make sure people hear about that?

Dan?

Well, first, it's a an incredible place to volunteer at.

But there's all kinds of levels and types of volunteering folks can do.

And, everyone has different levels and means of how they can volunteer and what they can do.

So, you know, I mentioned a few in the write up.

I, you know, you can you can clean, you can help outside, clean up the yard, you can cook, make a meal program.

They have, their volunteer coordinator does a great job at placing people with that.

they have people that come in daily just to make sure the kitchen's clean all day long and that things are in their place.

if you have canned food, they have a pantry they could store it in.

And then people like myself and hundreds of other volunteers that come in and cook almost every day, to take advantage of those donations and turn them into meals, or they bring in their own food and cook a meal.

And that's, again, another level.

all kinds of businesses have been volunteering and making meals on a weekly basis.

And you just we got to keep that up because you don't know what's going to happen.

And when I used to be the superintendent of Spent Support School District, trying to get people to understand a large budget is hard sometimes.

But when you say, take your house, your expenses and multiply it times like 20,000 and that's what we have to take care of.

This isn't a small house.

This is, fifth.

how many bedrooms?

20.

For what it's for.

So they can have anywhere from 45 to 50 plus guests and and, staying there on any day and, for those who have had kids and you fed your kids, you know how expensive they get.

So, I think that type of volunteering and all that, these are the big programs are important.

But the day to day stuff where the rubber hits the road is, just as important.

That's, you know, does a story and, does.

Hello by the way.

And, you know that her story is that, you know, like, her and I, we saw each other every week for almost a year until she, you know, she finally got through with the child.

So she started putting in special request for her son.

So, but that's what that's that.

Well, I just wanted to.

I just wanted to touch on that from the other, on the other side of the fence about those volunteers that are at that house have become like family to us.

I thought when when doomsday happened, it was overlapping when we were also there.

And I got pretty close with end.

And I just remember coming down in the morning when he was staying there and I said, dad, it's like 6 a.m., what are you doing here to make soup?

And he's like, no, I'm staying here for the baby.

And I just was like, so sad for him.

But also so happy to see him and also share that experience with him and those volunteers.

Just it's bigger than just coming to like, oh, I'm going to go clean or cook at Ronald McDonald House.

The people that stay there are so, so grateful for it.

when you have a baby in the neck, you germs are a huge thing.

The ladies that come in there and clean, they mean business when they get it clean, and you can smell it through the house when they're cleaning and they get in there and they kill those germs.

And it's a it's a very big deal for those families.

So we are so, so grateful for those volunteers that come there.

Well, and you know, Desiree story, you know, talking about thinking about do I have to go back to the nick.

You you know, you heard Doctor Herron.

Dean mentioned that what happens on that first day, is, obviously, you know, different for every family, different for every child, but sometimes literally a matter of life and death.

And, but it is about so much more than that.

And often it's a long road of care, sometimes a lifetime of care, and sometimes it is coming back and needing more care.

And I think sometimes we think Doctor Herron, Dean, about these stories of, you know, whether it's, a Murray story or Levi or others, you know, it's that that birthday as opposed to how much care we're talking about, how much attention we're talking about how much sometimes disruption to family schedules we're talking about.

It can be a great deal.

Right?

So one of our mothers said it best, I think, you know, when you come home from a long stay in the hospital, you basically you're starting a small business.

You've got to coordinate all of their medical care.

You got to coordinate outpatient visits, you got to coordinate people coming into your house to work for you on behalf of your baby.

And that's hard when you just want to hold your baby and feed them.

so it's a big business to put that all together.

But there's hope that when we want to be sure that we're not just letting you suffer and kind of it's resources that aren't easily available.

No one has a, bank of nurses that are willing to come out to your house.

They're hard to find.

You got to rely on people that have been through that.

You got to rely on people that know where to get those resources from.

And all of these stories share that one common, which is if you don't have a big network of support, you can really feel alone.

And that makes it so much harder to worry about your baby and then try to do this on your own.

No one needs to be on their own to do this well.

And Dan's got this interesting perspective, having been, how long were you in Spencer Porter's The Superintendent?

four years as superintendent.

Okay.

And so you had the chance to understand a budget and understand the pressures of creating a budget.

And you know, the way that the community might, feel about certain things.

Are you spending money the right way?

Well, now, you know, you're working with this organization, and, everybody's under the microscope these days, so you're pretty comfortable that things are running efficiently and the money is being spent in the right ways.

There at the right time.

Yes.

Well, I was on the board, and I trust the board.

I mean, they they probably have 20 plus professionals and the, in our community from all different industries, which is important to balance out when you're making decisions about running basically a huge hotel and, and a company that is serving people, they, they do a phenomenal job, and they've got a succession plan built into the board policies of recruiting and keeping that going.

So I think you know, social media is powerful.

One of the most important things that can happen is when the Ronald McDonald House or other charities in Rochester put out a call for this is what we're doing.

even if you can't volunteer or help, you can spread the word.

Right.

So the power of ten and getting that information out there, you know, that that we're going to have to keep working at that.

And what I experienced that the Ronald McDonald House was that we had to be when I was on the board, we lost the garage sale.

that was almost $800,000 a year of revenue that we lost.

And we had to go back to, okay, how do we fund this?

Because we're not getting the federal funding and the state funding beyond 15 or so percent.

We lost our grant matching program.

We had to make up that.

And how do we do that?

And so there's the that the board keeps working.

So to go back to your question, I trust them.

But we get when we spread the word, the best thing people can do is help us, and spread it to their social media network and get people to pitch in.

However we can.

I can relate to that.

I mean, it's the power of community and absolutely asking the community to step up.

So as we close, I'll ask everybody just kind of weigh in here.

Carol, take us.

So what have we not what have we missed here?

What should listeners kind of take away from this?

I think what's really important is, to not overreact and really focus on the facts, decide, discern, where you get your information.

Like, WXXI should be a great place to get your information.

I'm a big fan.

It's measured.

Right?

I'm a fan.

really important to listen to the delegation.

listen to your, local representatives.

What they're saying, what they're hearing.

Share your stories with them.

And, advocate where you can, but really importantly, volunteer and support the community based organizations that are filling the gaps right now, like the Ronald McDonald House.

And I do want to make sure that, I share that we have an excellent leader, and Joanne, as the CEO, she's got an excellent team.

We've got a really strong board.

it is an extremely well-run organization, and it's really filling the gaps.

very well.

It does sound like you're concerned that people are getting a lot of information from sources that you don't think are trustworthy.

that would be my opinion.

Yes.

Okay.

Doctor Harrington, what do you want to leave with listeners?

these kids with medical complexity are actually, if you want to talk numbers and look at big budgets, the top 1% of kids with technology dependents account for 30% of Medicaid expenses right now.

So these are kids that are in and out of the hospital all the time.

If we just focus on them, there is room to save money.

There is room to do things better for these kids if we can support them and those first few years.

Are you an optimist?

Right now I am just because Joanne's helping me be optimistic.

What's the alternative anyway?

Right?

Joanne, I agree.

I think, you know, we can we've got to be smart about it.

I agree with Carol.

You know, we've got to know where we're getting our information.

But I think we've got to be also proactive and kind of stay on the light.

You know, we've got to we've got to figure out how to get through this.

Because if we don't, you know, the alternatives are it's really hard to to look at these families and not, you know, we don't have a choice.

They come to us in probably their most darkest moments, and we need to be for them this strong supporting moment for them and get them through it.

And that's what our promise is to them.

You know, we are we are more than just lodging, food and transportation.

We know that minutes matter, and our promise to them is to give them every minute back so they can be at that bedside for their child.

And we do that with the support of our community, with the support of our board, with the support of our health care partners.

And we are, you know, proud to be able to do that.

And this is our promise.

This is our mission.

So and we thank you for the opportunity to have a platform.

Well, and people are going to learn more through a film called Audrey's Children Coming as well.

Right.

That's a major motion picture coming out of what this month is this month.

Yes.

and it's about Doctor Audrey Evans, the physician who founded the first Ronald McDonald House about 50 years ago in Philadelphia.

Correct.

Doctor Evans was known as the mother of neuroblastoma, and helped revolutionize cancer treatment by, introducing the first staging system for cancer.

An incredible story.

But the film is called Audrey's Children.

Coming out this month here.

Got a little Rochester connection, too, as well.

Here it does.

Yes.

Yes.

yes, doctor.

Carl D'Angelo, who actually is in the nick here at, Gal Sano is, her stepson.

So little brush with, with the famous right here.

With famous here.

thanks to everyone.

And, to the parents on the panel.

Panel.

And by the way, I love hearing the kids here.

Hey, Desiree, best of luck to you.

Much love to your family.

Thank you for sharing your story.

Thank you so much for letting us share her story with you guys and just keep listening to us this this afternoon.

We really appreciate it.

You got continued.

best wishes for Amari and the whole family.

And to Dan, Mill Gate and Levi and everyone associated.

Great seeing you.

Thank you for telling your story here.

Thank you.

And for Joanne Ryan, president CEO of the Ronald McDonald House Charities of Rochester, New York.

Thank you for being here.

Thank you to Carol Taggert, CEO of Finger Lakes Performing Provider System and a board member for the Ronald McDonald House charities.

Thank you for being here.

Thanks for the opportunity, doctor.

Neil Herron.

Dean, thank you for sharing your expertise as well here.

Thank you from all of us at connections.

Thank you for listening, for watching on the YouTube channel.

Wherever you're accessing us.

We'll be with you tomorrow on member supported public media.

This program is a production of WXXI Public Radio.

The views expressed do not necessarily represent those of this station.

Its staff, management, or underwriters.

The broadcast is meant for the private use of our audience.

Any rebroadcast or use in another medium without express written consent of WXXI is strictly prohibited.

Connections with Evan Dawson is available as a podcast.

Just click on the connections link.

At WXXI news.org.