- Will you consider this?

For whatever reason, you have a child with medical complications who's been hospitalized.

Your kiddo's ready to leave the hospital, but not quite ready to head home.

And there's a lot of medical treatments you need to know about and administer.

We have just the place for all that know-how in Central Illinois.

(blissful music) Almost Home Kids was established first in the Chicago area, and now we have only the third in the country.

Hands-on training for families and caregivers is first and foremost, and they all become quite skilled.

And when families need a helping hand, respite care is available to give caregivers peace of mind.

I'm Christine Zak-Edmonds, and my guests today are Cindy Martin, the director of Almost Home Kids, and Suzanne Ruskusky, a grateful parent who not only uses the services and use them in Naperville, but she and her husband were the driving force in bringing Almost Kids here into Central Illinois.

Welcome, ladies.

- Thank you.

- Thank you.

So, I didn't tell the whole story, but first of all, Cindy, give us just a brief description of what Almost Home Kids is all about.

- So, Almost Home Kids is a 12-bed facility located in the Peoria area and Rolling Acres Subdivision, and it provides care for children transitioning from the hospital to a home-like environment and also respite care as you mentioned, Christine.

- Well, so some kids are, there's a lot of complexities and I would be scared to death to try to take my child home you know, 'cause monitors going off and blinking and all that stuff.

And you won't let any child leave until the caregiver or caregivers are well-educated in that area.

- Yes, so we provide hands-on training at our facility, so the parents actually come in, we have an extensive training manual that we go over with the families and train the caregivers, and they also have to have a two 24-hour stays where they actually come and spend the night in our facility with their child, and they do all of the hands-on care with a nurse by their side.

- [Christine] Which is a relief for many of them.

- Yes, yes.

- Now, Suzanne, you have three children, - [Suzanne] Mmhmm.

- [Christine] Marin, we'll talk about her a little bit later.

She is volunteering there.

- Yes.

- [Christine] At Almost Home Kids now, or AHK we'll say.

- Mmhmm.

- But you have two boys with severe complexities.

Tell me about Gabe and Garrett.

- Gabe and Garrett, when they were young babies about three months old, they started having seizures, and once that occurred, we started seeing milestones drop off and they started where they couldn't eat on their own, and both of 'em now have G and J-tubes and had them since they were, Gabe was about a year old, and Garrett was about five years old when he got his G-tube.

They still have seizures, but not as bad.

They both have chronic pulmonary disease as well.

So, Gabe, my youngest, is on oxygen.

Garrett has a diaphragmatic pacer which helps increase the diaphragm to move up and down where it was failing before due to his cerebral palsy.

So, they cannot talk or walk.

Gabe is bedbound.

So, he is either on one side for four hours and switches to another.

He cannot lay on his back 'cause he has trouble breathing.

So, that for his life has been very difficult.

So that's how we know we knew if we were going to go out of town for a wedding, or for any kind of special event, it would be very difficult to travel with Gabe.

- Well, how did you find Almost Home Kids then in Naperville?

We didn't have it here.

And, and you had been handling all these situations up until then.

So, how did you find it?

- So, we had a long stay with Gabriel, 'cause he was much more severely affected by this disease.

And we spent 3 1/2 months at OSF Children's Hospital of Illinois.

We were in the PICU for most of that time.

He ended up with two different pneumonias, the first one being from an aspiration.

So he had swallowed food and had trouble getting that down into his stomach, and then it went up into his lung tissue.

So after that occurred, we were in the hospital for a long time and we really didn't know what to do afterwards, 'cause we just had had a sitter at our house.

We never had someone who was medically-trained.

And so we were terrified on what to do, and that's when DSCC came to us from the social worker at the Children's Hospital of Illinois and talked to us about the Department of Specialized Children Care in the state of Illinois.

And they told us that we could get a home nurse.

So, it was going to take quite a bit of time 'cause as you know, it's harder to get nurses in the home and there was a shortage then, too.

So, we really had no one to watch Gabe 'cause we both are physicians, we both work.

I work three days a week and my husband works full time, at that time, and so we really were in a quandary.

So then, we had heard about sending Gabby over to the Almost Home Kids in Naperville 'cause it had not been built here yet.

So, we packed up our van, filled up with all his equipment, and we took him there for that transition until we could get back to our home with a home nurse- - With a full-time nurse.

- Mmhmm.

- And you need a nurse 24-7?

- Not 24-7, just 7-A to 7-P.

So, 7 in the morning 'til 7:00 PM.

- Alright, and then you take over.

- Then, we take over- - Alright.

- Yeah, yeah.

- Okay.

- [Suzanne] Luckily, he sleeps well during the night.

(Suzanne laughs) (Christine laughs) - Yeah.

- That's good.

- Yeah.

- And you both too.

- Yeah.

- So Cindy, you told me earlier that one little patient had been, we're gonna skip all over the place, - [Cindy] Yes.

- One little patient had been there really since birth for two and a half years.

- He had been there so he had transitioned from the hospital to Almost Home Kids and he was there for two and a half years.

He went home in the spring.

It just was a long process for training and really longer to find in-home nursing.

As Suzanne mentioned, it's very difficult to find in-home nursing due to the shortage.

- [Christine] Mmhmm.

- So.

- But this is a godsend.

- [Cindy] Yes.

- And then you and your husband, Jeff were instrumental in moving that ball along to get Almost Home Kids to come here.

And this outside of Chicago.

Naperville was the first one, and the second one is.

- Down in.

- Down in Chicago.

In the McDonald building- - Right.

- On The top level.

- Yes, yes, yes.

- Mmhmm.

- Alright, and then how did you say, "Hey (laughs) have we got a deal for you!"

- You know, we talked a lot with a lot of, you know, Dr. Benson was a big part of it then, too.

He was our pulmonologist for Gabe and he really was very interested in it.

And then it started to grow with the administration and the foundation to build those pillars to get the backup from the community.

And the community really rose up.

And a lot of dollars were brought into this project.

And we were just so excited to see that all our kiddos were being shipped to you know, Chicago, to Naperville area.

And, you know, a lot of 'em would have to take an ambulance to get there and they would go with like one of their pulmonologist and a nurse and, you know just was a lot of trauma just to get everything packed.

And, and you can't see your kiddo every day if you're working, - Right.

- And they could be up there for a month or two.

So, we've really felt we're really needed in this area, especially with such a great children's hospital that, you know we'd take care of very severe medically challenged children and why not have something like that for a backup here?

- Correct.

- And that's when it came about.

So, it was just my husband and I were elated.

I mean, it's just like seeing these kids have an opportunity and the families as well.

- Right, right, exactly.

Now, what is the pay structure then?

You said that there's the DSCC.

Does Medicaid also pay?

For example, when a child is there for maybe only a month in the transition or whatever?

Do the parents, are they responsible for, for that billing as well, or?

- It is covered by Medicaid and even some private insurance companies as well.

It depends on what the parents have for their- - Their plan.

- Insurance plan, but yes it is covered by Medicaid or a private insurance company.

- Now, you said that so respite care is not only for you to be able to get away for a day or two or whatever you need, but you can also you have 14 days available of respite care a year, - [Cindy] Yes.

- But otherwise, so 365 minus 14 still leaves the parents with a lot of responsibility.

- Mmhmm, yes, definitely.

- Yes.

And like, if someone were to get sick on, you know one of us, that was what our fear was.

I mean, during COVID I thought about that a lot.

You know, what if one of us, you know contracted COVID and the boys, you know, they're so easy to get it.

- Right.

- With their immune system being challenged, but yeah I mean, that was something to be concerned to have a place that could take care of them if we were sick.

- I'm more, "if we needed a surgery, a simple surgery," I mean things like that, you know, that you have that in your back door, you know, and that's, that's pretty big.

- And then you have some grant money and some money from foundation.

And how does that work?

- So we've, there was a fund set up by donors.

So we had donors that actually set up a grant respite fund.

So, that is utilized for children that are not covered under what we call the DSCC waiver which covers the respite care.

So there are some children that don't qualify for that funding, and so we then with this grant money, and because of gracious donors, we're able to provide that respite care for these children and to give the parents a break.

It's wonderful.

- And I think I read there's about 14,000 children in the state of Illinois with medical complexities.

- [Suzanne] Mmhmm.

- So the need is really there and that we only have 36 beds?

So each facility has only 12 beds?

Is that right?

- Yeah, yes.

- Yeah, yes.

How does that happen?

How, how did that stone not get overturned or, you know (chuckles) flipped over before Naperville?

- That's a really good question.

I mean, it, it obviously, you know, is a needed program.

And I think it's just taken time for people to realize the importance of that.

And actually being able to get the children out of the hospital into a home-like setting and they grow and develop.

I mean, we have a toddler there that came to us and she could barely sit up and now she is running all over.

- [Suzanne] Mmhmm.

and she has a trach she's, you know, has an airway.

- So the parents or caregivers whoever it might be, parents might be grandma, grandpa might be an aunt or whatever.

- [Cindy] Right.

- They learn how to clean the trach.

They learn everything about that.

- They learn every single thing we teach them.

- How difficult is, how hesitant are parents?

You're in the medical field.

- [Suzanne] Mmhmm.

- So his is like maybe nothing for you, I don't know.

And maybe I'm speaking out of turn, but how difficult is it for the parents when they first get there?

It's like, oh no.

- You know, no, I, I, it is very overwhelming, for some families and parents and we just take whatever time it takes to train them.

And we spend a lot of time.

Our nurses are specialized and they take time with the parents one-on-one providing that education and training and we make sure that they are comfortable, fully trained, and ready to take their child home.

- But there's not a limit on the amount of time that they can spend, the respite care has a limit, the 14 days.

- Yes, transitional care is typically up to 120 days.

But for the most part, it is longer than that because of the difficulty in finding in-home nursing.

That's really typically the delay is finding nurses.

- How did Naperville originally establish that 12 beds was about all you can handle when there's so many kids that need these services?

- I'm not really sure how they came up with that exact number but I do know that, you know, it is a lot, you know if you have all 12 beds full, it requires, you know it's a very, you know these children have medical complexities.

And so it's a three-to-one ratio.

So one nurse to three children.

And so again, I think just limiting the size at this time and our facilities, all private rooms as well.

- Is there in your experience, is a little bit different, but is there a typical day at Almost Home Kids?

How does the day start out?

- Well, the day typically starts out where they get the children up in the morning and they get 'em up either in their chairs or standers.

They, some kids get in their standers.

We have a family area, a family room.

So in the mid-morning, about 10:00 am, we either take the children to the family area, so that they can all be together, and we do activities or we can go outside.

We have a huge front porch, which is wonderful.

So we, you know do arts and crafts or bubbles, sidewalk chalk.

I mean, we do all kinds of activities with the children and then we have a playground as well.

So we'll take them out and we have handicapped-accessible swings and chairs that they can actually go outside and enjoy the beautiful weather, so.

- So your daughter, is volunteering there now because she has seen it from the ground up.

- [Suzanne] Mmhmm.

- What does she enjoy most about it?

And can she see the joy in her brother's eyes when they're there and able to participate in things?

- Yes, she enjoys it immensely.

She is there about one time a week and for her service hours through her high school and that's the one thing she wanted to do.

'Cause she found such a gift that she saw that these kids have had a special place, you know and every year we would go back to the Almost Home Kids, they would remember her name, too.

And they'd say, "Are you still doing ballet?"

And what, you know?

And so it was just a special place and it felt like a home 'cause these nurses remembered these kiddos.

And she's enjoying it 'cause she gets to make signs and help with decorating outside and different fun projects.

And she gets excited.

She'll come home and say, "Oh, well there was a kiddo that, you know, it was there and he just looks so happy and he is waving at me," - Aww.

(both laugh) - And I just thought, "Awww she's making connections."

- Right, right.

- So it's, it's neat.

- Well, it is a very nice home-like setting.

It's very comfortable, it's not like a hospital where everything is cleaned and sanitized.

And I mean, there's pillows.

- Mmhmm.

- Yeah.

- There's decorations on the walls and on the windows.

So, what can people do, general public right now?

Because this is, this is a hidden secret.

This really is something that a lot of people don't know about, what can they do to help and to keep this place going and vibrant?

- Well, we have volunteers.

And so we have recreational where they can come in and you know, spend time with the children, reading to them, doing activities one-on-one with the child.

We have facilities, so one of the things that we wanted to do this year was start a community garden.

So, we started a little small this year and we had a volunteer who specializes in gardening.

So he came and volunteered.

He actually built our garden.

He planted it and he's maintaining it for us.

- [Christine] What are you growing?

- We're growing tomatoes and cucumbers this year, - We started small, next year, we hope to really grow that and provide lots of fruits and vegetables.

So, we're super excited about that.

We have different organizations, we partner in the community and they come in and they'll clean our furniture, pull weeds, work outside, and do all kinds of activities.

So it's very much appreciated.

And we need volunteers.

- [Christine] All the time.

- All the time, all the time.

- And they can name their own hours?

- Yes.

- It's not like they have to commit to anything specific?

- Yes, they can sign up for whatever hours they would like to do.

- [Christine] And whatever job they would like to do?

- Yes.

- And they actually can choose that as well.

- [Christine] A happy volunteer is a happy volunteer.

- That's right.

(Suzanne laughs) - Well, now the kids, a lot of them have G-tubes so they won't be able to eat the cucumbers or the tomatoes this year, right?

- [Cindy] Right.

- But their families will be able to?

- [Cindy] Yes.

- And their families learn how to prepare their special meals and things too, or whatever they- - [Cindy] Their feedings.

- Yeah, their feedings, yeah.

- We do have a toddler there that eats and she eats very well.

- [Christine] Okay.

- So that was pretty much that's why we came up with that idea.

So we can provide her healthier options, Because we do not do food prep at Almost Home Kids.

- Okay, now you also have, well, and you were involved in this too, a wishlist for things that are needed because you have 12 kids there at any given time.

There's a lot of things that you need to have in the storeroom for whatever is happening.

- [Suzanne] Mmhmm.

So like, I know you need diapers and wipes and what else?

- We have a full wishlist out on the Children's Hospital of Illinois website.

So, we need all kinds of things, you know, like food items, like, that are non-perishable food items, sheets, blankets, pillows, I mean, all of those things we utilize for our children.

Every child when they come, they get a specially made blanket, that's theirs.

- [Christine] And who makes those?

- We have volunteers that actually make those.

- Same as volunteers that do the little caps for the babies?

- Yes.

- Yeah.

- At the hospital and that kind of thing.

- Yes.

- Yeah.

- And of course, toys, we have lots of toys.

So we always give every child that comes, they get toys as well.

- A special toy?

- Yes.

- And so your wishlist is specific in what toys to get also?

- It does say it on the list, on the site- - Yes, yes.

- Doesn't it, yeah.

- There are specific items because we want things that are developmentally appropriate based off the child abilities.

So we, we like to give them a wide variety.

We have therapists that come in and work with our children to physical therapy, speech therapy, occupational therapy as well.

- Right, well, it certainly is something that we definitely needed.

What, kind of fundraisers do we have coming up?

I know that there's an ice-cream fundraiser, but you have a big outing coming up.

- So we have an outing October 1st and it's going to be a twilight golf tournament, nine holes and we are doing it, the country club of Peoria.

And we're looking for sponsors.

Anybody who's interested in doing anything with sponsoring a cart or sponsoring a hole or donating for a raffle prize.

Any of those would be so helpful 'cause all that money is gonna go over to Almost Home Kids.

And we're hoping to like help that with some of the therapies that the kiddos do get just to increase that help for that.

- Alright, so October 1st, and is there information out someplace on the internet?

- Not yet.

So, we'll be sending out letters and invites in August, mid-August, and but as far as sponsors and different things like that, we'll probably put it onto the website I'm assuming in the next month.

So people can look at that and see if they are interested in donating.

- [Christine] Right, do you remember what the cost is for a foursome, or any of those things offhand?

- Are you a golfer?

- I am a golfer.

- Okay.

- I feel like it's 150, that includes dinner, some drinks before, drink tokens, what have you, and maybe a little small set like a golf sleeve of golf balls, something like that.

We haven't quite decided we have to hammer those details down.

- [Christine] Still working on it.

- What other kinds of fundraisers are you foreseeing or has there been any talk about that yet?

- We don't have any right now, but I'm sure we will have some coming up.

- Have you always been, or have you ever been full capacity?

All 12 beds?

- We have been at 11, so probably in the next week or so we will be at 12, so.

- [Suzanne] Wow, that's great.

- Yes, we have quite a demand for transitional and respite.

Our respite referrals have increased significantly.

And so we are trying to accommodate, our goal is to accommodate every family that comes to us.

- And where do the referrals come from?

Doctor's offices, or.

- Sometimes, it's directly from the parent, it's from physician offices, and we have actually families coming from Missouri now, St. Louis area.

We have a child coming.

They don't offer, they have nothing like this in the state of Missouri.

And so they're coming, so that they can get away for just a few days.

- I know that it, at one point there had been a couple of places that had some interest in this franchise but nothing has really happened with that yet.

- Yeah, I heard about Arizona was looking into it and somewhere out east.

Do you remember the one out east?

- Yeah, I'm not sure.

But they were trying to flagship like just to follow those same guidelines.

- And because our facility now, the place in Naperville was a little house and then they added on and they added on- - [Cindy] Yes, they did.

- And then downtown, at the Ronald McDonald house, but that's different but we are the first one to have.

- [Suzanne] Build it up.

- Have it there in the HVAC system and all that stuff.

So we're really a prototype.

- Oh yes.

- We are.

- Definitely - It's beautiful facility.

- It really is.

- Yes, thank God.

- And people should at least stop by.

So what's the address again, 5200?

- 5200 North Hamilton, Peoria.

- And they really should stop by and see it because it is a happy place.

- It is a beautiful place.

- It really is.

And the kids are always smiling.

- Oh yeah.

- They're very happy.

- Well, and that's great.

And then the families are too, just to know just to have the peace of mind, that there's a place for your kids to go.

- It's huge.

- And you have two kiddos that get to use the facility.

- [Suzanne] Yes, yes.

- And they're happy about it?

- Yes.

- [Christine] When you tell them that you're taking them there, do they get excited?

- Yeah, I mean, when we pull up and get into the facility, then they're like, "Oh (Christine laughs) this is exciting!"

The fun, you know, people that are there and all the different things they can do, - Not the same old, same old anywhere?

- Yeah, exactly!

(laughs) - Not that they don't love you.

- [Suzanne] Yeah, you gotta change it up a little bit.

- Yeah.

- It's our vacation, too.

- [Christine] Yeah, exactly.

- Well, ladies, thank you so much for sharing this story.

- [Suzanne] Of course.

I do hope that more people will check out the wishlist.

- [Suzanne] Yes.

and that we'll check out the facility and we have some great pictures that will be also airing during this time.

And anything else you'd like to add in the final minute or so?

- I just want to say that I appreciate all of the community support and all the donations that come through because without that, we would not be able to do all the things that we do for the children.

And it's a phenomenal program for our kids.

- [Christine] Mom?

- And I would say stop in, anyone any family member who has a child that has special needs or someone who doesn't and just is curious to see what this place does for this community, 'cause you would be just amazed.

It's an amazing place.

The people inside and out are beautiful.

- Yeah, and this is an amazing community.

That's for sure.

I found that out in the 42 years I've spent here 'cause I'm only 43.

(all laughing) Anyway, thank you very much for being with us.

And thank you for joining us.

We hope that you will stop by Almost Home Kids and check it out, help out in whatever way you can.

So enjoy, stay safe and healthy.

(blissful music)