Narrator: Presentation of Idaho Reports on Idaho Public Television is made possible through the generous support of the Laura Moore Cunningham Foundation, committed to fulfilling the Moore and Bettis family legacy of building the great state of Idaho.

By the Friends of Idaho Public Television and by the Corporation for Public Broadcasting.

Davlin: Hello and welcome to this special episode of Idaho Reports.

I'm Melissa Davlin.

At some point in our lives, nearly all of us will need help with daily tasks like bathing or housekeeping.

Whether it's because of aging or injury.

Some of us will be able to rely on family members for that help, but not everyone has that luxury because their loved ones aren't nearby or physically able to provide care, or because those needs are too intensive.

And even those who can provide full time care sometimes need respite.

That's where in-home care providers come into play.

But for years, Idaho has struggled to find enough workers to provide these essential in-home services.

In 2023, Idaho Reports, producer Ruth Brown explored Idaho's in-home caregiving crisis, interviewing people who are most affected by those worker shortages.

Caregiver: I█m gonna fill your water too.

Shiloh Blackburn: Thank you.

Ruth Brown: Direct care workers make it possible for Shiloh Blackburn to live independently in her Pocatello apartment.

Blackburn has cerebral palsy and relies on those workers for daily help.

Those workers are in short supply across Idaho.

They help me get up by the bend and into my chair.

Blackburn: They help me get up out of bed and into my chair.

And let me clarify that one part.

Once I'm in bed, I can█t get out of bed on my own.

Once I'm in my chair, I cannot get out of my chair on my own.

I have to have help.

Say if somebody does not come in for a shift.

I'm stuck.

Because like I said, I can't get out of bed or out of my chair.

So I can't take myself to the bathroom.

I can't cook.

I can█t get my medication or vitamins And when not, it's really been and whatnot.

It's really been stressful the last couple years trying to find people that are reliable and accountable and trustworthy.

Brown: Shiloh has Medicaid and Medicare and is under self-directed care.

Self-direction means a medicaid participant has decision making authority over their care, and it's a person centered care process based on their needs.

Blackburn: Up until this year, I█ve only been able to pay people $11 an hour and even then Then I had to go through I had to go through several hoops several hoops to get a larger budget.

to get a larger budget on self direction.

And my budget controls how much I can pay my caregivers how much I can pay my caregivers and how many hours I get during the day.

Brown: The number of hours of service she gets during the day can impact many things she needs them for, such as food preparation, hygiene support, medication and companionship.

The alternative would be to rely on her parents, whom Shiloh knows are aging, or she would be forced to live in a group home.

She also argues that in the long run, a group home or a nursing home would be more expensive to the state.

Blackburn: One of the things that concerns me most is that caregivers are not paid as much as other fields of work.

Right now, my caregivers, they don█t have benefits, they don't get paid time off.

They don't get how they pay They don't get holiday pay.

because that's the main part of it.

Because that's not in my budget.

That's not something that my consumers and other caregivers have.

my caregivers and other caregivers have, you know?

They really are hardworking and they really care about me And then one can ensure I get the care I need.

and they want to make sure I get the care I need.

But at the same time, they have their own lives to live and they have their own needs.

Like, where are you?

Rochelle Larson: Look, where are you?

You're in here somewhere.

Brown: For Rochelle Larson of Rigby, direct care workers help her family better take care of and manage the life of two children with disabilities.

Brynnle: It█s me.

Larson: Is that the governor?

So we have two children with special needs.

We have a son, Abraham, who is 14, almost 15.

And then our daughter Brynnle, who is ten.

She has Down syndrome.

Brown: Abraham used a habilitation interventionalist, which is hired through an agency.

The family gets about 10 hours a week for services.

Both children use Medicaid's family directed support service to hire workers.

That system isn't always perfect.

In the Larson: In the last couple of years, we've seen an increase in turnover in workers in turnover in workers with Abraham, for sure.

with Abraham for sure, and agencies not like being on a waitlist to be able to even get services as well.

So we felt very fortunate when we were able to actually receive services.

And then just in this past year, he has had four different people work with him and he's had about four months without anybody being available to work.

Schedules are very important and routines and finding someone that works well with your child and they have a relationship and they start making progress on goals that they're working on.

And then the worker leaves for another job.

And then we have a transition and we're starting all over again.

And so it feels like we make a little bit of progress and then a worker changes or leaves and then, it feels like we're starting at square one again.

So it just gets frustrating as a parent to see your child make, make some progress and then regress and then it feels like that cycle just feels like that cycle just goes over and over and over again.

Brown: Brynnle uses a direct care worker to help her focus on goals and offer her parents respite.

Larson: We hire the individuals that come in and we work with them to get to know her and to train them on the goals that we're working on and the expectations that we have for her and for the workers.

We've found that in our area there's a lot of college kids and so there are people that are looking for jobs, but we can't pay what other businesses are paying.

And so it's really difficult to be able to keep workers at a steady rate.

Most of ours have another job and so their hours are very limited to be able to work with our children.

We try to bring them into our family and make them part of our family, hopefully to get them to stay and work longer because we see with her as well, she's very routine oriented.

Brown: The Larson family tries to supplement their budget when they can, but Rachelle knows they can make more at other jobs.

Larson: We've taken them on vacation with us and then we have them work for a few hours, but then the rest, they're just on vacation with us.

And we try and, you know, we supplement when we can as well with our own finances and just try to make it worthwhile, hopefully, for them to want to stay, because we know it is lasting job.

But it is also very rewarding when you see your children progress and the people that they're your children progress and the people that they're working with, when you see them meet a goal, it is very rewarding.

And so for us, I think we just really try to make them be part of our family so they never want to leave us.

Rachelle seen the benefits of having a good care worker, Brown: Rochelle has seen the benefits of having a good care worker and stressed that the value of that is something that needs to be reflected in their wages.

Larson: I feel like that's a big reason why we have such a shortage, and because it is an exhausting job, it's hard to work with individuals with disabilities because it's either physically hard.

You know, with our son Abraham, it's mentally and physically draining.

And so to be compensated for that work would be amazing because we value that so much.

I know our family couldn't do a lot of the things that we do, you know, typical things that families take for granted.

If we didn't have that extra support and care in our home.

I feel like sometimes maybe government and even outside, you know, just people in general feel like they're just glorified babysitters or someone there to help watch your kid.

When they're doing a lot more.

They are working on goals and outcomes and trying to help our children be able to to contribute to society.

Davlin: Since this package aired, the 2024 Idaho Legislature appropriated $66 million for Medicaid rate increases for developmental disability providers.

Still, in-home care provider shortages continue.

We touched base this week with Shiloh Blackburn, who told us that since the story first aired, she moved from Pocatello to Rexburg to be closer to her family.

Her parents now live just two minutes away and can help with any caregiving gaps.

During the Covid-19 pandemic the state started a program called Family Personal Care Services, meant to address the shortage of direct care workers and slow the spread of the virus.

The program allowed parents or spouses to receive payments for providing in-home health care for family members.

Before the pandemic, both state and federal law had prevented family members from receiving payments for providing personal care services.

But that program is ending in July.

The Idaho Department of Health and Welfare received permission from the federal government earlier this year to discontinue the program, after Department Director Alex Adams cited a growing caseload in the program and costs nearly quadrupling between 2022 and 2024.

Adams also expressed concern about fraud from some who use the system, telling lawmakers of an audit that found parents sharing information on how to manipulate assessments to receive maximum payments, double or triple billing or logging more than 24 hours of care in a single day.

In May, associate producer Logan Finney sat down with Kyle Pfannenstiel of the Idaho Capital Sun to discuss the program's end.

Finney: Why is the Idaho Department of Health and Welfare looking to wrap this up a couple months early, before the feds even intended to?

Pfannenstiel: So, yeah.

So it's important to note this this program was already set to expire in March of this year.

That's when our federal approval, allowing for this program, to be in place would have ended.

And so the Idaho Department of Health and Welfare last November announced that we're going to seek to end it early.

They said that that cost was spiking.

Enrollment was spiking in this program much faster than they predicted it would.

And, they also they also found a number of fraud instances.

And you outlined them pretty well.

Of of where they believe that there were some instances of fraud and abuse of the program's benefits, and they didn't have enough safeguards in the program to make sure that it was being overseen in a way that protected taxpayer funds.

And that also protected the health and safety of children.

Like, I think you talked about, double and triple billing for for caring for the same kid at the same time.

And, and also also working other jobs while you're doing this.

They talked about like, some parents were, were billing services, for caring for a child while while, while also working, a rideshare service.

And and so that that those are those are the main reasons why health welfare sought to to end this program.

The federal centers for Medicare and Medicaid Services recently approved that an ending of the program.

And, and and obviously that that the health welfare submitted a plan for other options that families have as well.

Finney: And so you've talked to disability advocates in your reporting on this issue.

What sort of concerns are you hearing from them as this program has ended?

Pfannenstiel: Well, they they they're deeply concerned about the end of this program.

Health and welfare has had has cited some, some statistics.

They've seen a, a 10% increase in direct care workforce.

And, they feel pretty confident that, that other options can fill families needs.

But but families I've talked to don't really feel that way.

Because because they talk about all the issues we talked about just a few minutes ago, all these issues in the direct care workforce and the kind of churn of workers that that leaves families in this position where where they're constantly dealing with new faces in their household and, and also they worry that, you know, some families say that they know their kid best, or their spouse best.

And it's important to note that this, this, this family caregiver program was just allowing, parents and spouses to be paid caregivers.

So, so other family members are currently, even after this program and still allowed to be paid caregivers like cousins, aunts, uncles, grandparents.

Finney: Grandma and grandpa aren't always available, though.

Pfannenstiel: And these can also be physically demanding job sometimes if people have, people have disabilities that affect their movement, this requires, you know, oftentimes use, kind of machinery to help, but they help lift people out of bed, help them use the bathroom and bathe.

So these can be demanding jobs, and they're often pretty low paid.

Last time last I heard was these these jobs are typically paying around the same price as you can get to go work at a fast food restaurant.

And they're they're pretty demanding and they have high, high turnover rates.

Finney: And so this program, the family services program isn't meant to be supplemental income, right?

It's supposed to be paying the parents to provide this care.

If health and welfare was having trouble managing this program or making sure there wasn't cost overruns or fraud and abuse happening, why not invest more in managing the program rather than ending this?

The service for families who arguably really need it?

Pfannenstiel: Well, a few reasons.

When they did announce they were going to, they were going to seek to end the program early.

They also announced, a range of different programs, safeguards, I think like multiple, multiple different checks for, for, for compliance with the program.

And, but but it's also worth noting that investing more in the program would, would have required legislative approval in, in and if they also were to seek to end the program or to seek to extend the program, that that would have also likely required legislative approval.

So so the health and welfare was kind of in a, in a tough position of where they would have has to have to ask the legislature to do that in an environment where, you know, we saw budgets this year have have a very tough time making it out of the floor.

Finney: So as this specific family caregiver program is ending, you you referenced a little bit that health and wealth, health and welfare has given families some options.

But what what sort of programs, what sort of other options are available for these families.

Pfannenstiel: So there are a few options.

Health and welfare outline.

You know, work with direct care director agencies that families have worked with in the past.

Try to see if if workers can fill the hours that your family members need.

And and also there are, you know, other family members who aren't, this this program was specifically for what's called legally responsible individuals.

That's parents and spouses to be paid caregivers.

But like the talked about, other family members can still serve as paid caregivers in Idaho, even when this program ends.

And that's still an option in, in parents and spouses who became direct care workers, are still able to go provide direct care services, just just not to their family member, that that's their, that's their child or their spouse.

So they can go work for another family.

But but families I've talked to again say that these options are enough, and they're, they're very concerned that that kids will be able to get the care they need without this program month, I sat down with Shannon French and her children, Ruby and Grady, to discuss what losing access to this program means for their family.

Davlin: Shannon, thank you so much for joining us.

And thank you, Ruby and Grady, for joining us too.

How has this program helped you and your family?

Ruby French: Everything.

Shannon French: Everything.

Melissa: Everything.

Shannon: So, I think for us, I didn't really know this program existed.

But until I started doing it, I didn't have care for my kids in regards to their self care.

So I had, you know, my parents would watch them sometimes.

I had, not really friends.

I had a few babysitters.

But when you have kids that have needs that are.

She misses her grandparents.

My parents are both passed away.

So, but when you have kids with special needs, it's hard to find care.

It's a little more than just hiring a babysitter.

So this has allowed me, especially since I'm the one able to do it.

To be able to stay home, to help them with their self-care tasks.

And they've both grown quite a bit in the things that they're capable of doing and hopefully, if the program continues, that would continue for them to be more independent the older they get.

Melissa: Ruby, what do you like about your mom taking care of you?

Ruby: I think everything.

Shannon: Everything?

Ruby: Yeah.

Shannon: What do you like the best about me being home?

Ruby: Yeah.

When your home we can go swimming everyday.

Shannon: We can go swimming every day?

Not quite yet.

Grady French: Not every day.

I like the fact that we can go places like swimming.

I also like the fact that, my mom is the one who cooks for us and take care of us.

Takes care of us.

Because she's the one who knows us the best.

And we love her the most.

Shannon: Thank you.

Melissa: Now that the state has announced that this program is going away in two months, what are your concerns?

Shannon: I mean, gosh, there’s so much unknown.

You know, my kids are too old to go to a daycare.

And this program, you, if I find another provider, which they're 90% of families, there's about 1400 families on the program, and 90% of them have said in a January survey that they don't have a backup provider.

So, if I do find someone to come in and provide services, which I'm not opposed to, but I've checked with several agencies and they don't have extra workers.

They can come into my home, but it's not allowed to be like a daycare.

So I can't go to work and have someone in my home all day because that's against the kind of the rules.

Melissa: They’re not babysitters.

Shannon: Right, they're not babysitters.

And I have two kids.

So, somebody can only work with one at a time.

So when I'm, if I ever bill for Grady, we are we're not swimming, I should clarify.

You can't actually go swimming when you're doing this.

But it's me being at home helping him with those personal care tasks that he needs.

So, I can just.

It's okay.

It is fine to go swimming.

Grady: Yes.

Shannon: So I, you know, just work with him, or I just work with her.

And that would be, I can't imagine working a full time job where I'm going to put my where I'll put my kids, for starters.

But then if I have somebody come in in the evening to help, I'm going to have two people in my house, and it just feels a little uncoordinated.

And there's such a shortage of workers.

So I do have a couple family members that might be able to help, but not as a full time job.

Melissa: And you mentioned you previously relied on grandparents to help out.

That's unfortunately no longer an option for you.

Shannon: Yeah, there's a lot of families that don't have other family members here.

We, both of my parents passed away and we've moved to Meridian now, so, we're away from the family, so it's not like somebody can come over every day.

And, you know, I do have a few family members, but they're far enough away that it's not reasonable for them to come over every day.

Melissa: What are you hearing from other families in similar situations?

Shannon: Everybody's sad, you know, angry, just because of the way that it happened.

But I think people are scared, you know, what's going to happen to their child?

A lot of people have more significant needs.

So they might have a child who's on a feeding tube, or in a wheelchair.

And they if they don't have this care in their home.

Grady: Or in like or, and like they or like a baby that cries a lot and that like, has special needs, maybe that would be worse.

Shannon: Yeah.

Grady: Like worse to have special needs when they're maybe sitting with the baby.

Melissa: There are a lot of people who have needs, right.

Shannon: Yeah.

And I just think there's a bigger risk of having to put family into a home.

If they don't have the resources to take care of them at home, they might have to put them into a facility.

Which is not great.

And then there's other families that, you know, they have income coming from this.

They may not be able to go get a job because they have to take care of their own child, for free now, and they will start relying on other like maybe food stamps, or you know, other services.

So, I don't know.

I think there's a whole gamut of families, but I know there's 1400 families on this program, and if 90% of them don't have a worker after July 15th, that's a big problem.

I don't have all the answers for sure.

I don't have any of the answers.

I don't even have the answer for myself yet.

Melissa: The department has outlined concerns of fraud from some who used the system.

There was the November letter to lawmakers that outlined examples of parents sharing information on how to manipulate assessments to receive maximum payments, or double or triple billing, or logging more than 24 hours of care in a single day.

What would you say to the department and lawmakers who are concerned about fraud in this program?

Shannon: I think there's, I think there's bound to be fraud in any program.

Like food stamps, or any assistance program, there's always fraud.

But, I think the bigger issue is that this program grew so quickly that they didn't have the infrastructure in place to supervise the program.

And so normally, if you identified fraud, you would put safeguards in place so that that doesn't continue to happen.

And then, you know, move forward.

But that isn't what happened.

And there was no, as far as I know, there was no communication with the agencies that things were happening.

I don't think people intentionally want to be fraudulent, but there's always some.

But I think a better option would be to address the problem rather than canceling the whole program.

I can’t imagine if we canceled food stamps.

Melissa: You mentioned that you didn't have all the answers, not even for yourself.

What are the possibilities on the table for what's next for you and your kids?

Shannon: I know that the work group, who had previously worked with health and welfare plans to continue to try to draft legislation so that in the next session we may be able to get a family plan back in place.

I'm not sure what I'm going to do.

I'm I've looked at, started looking at different jobs.

I mean, I had a career prior to being, providing these services for my own kids.

And I can go back and do that, it’s something I'm passionate about.

But I'm not sure where that leaves them.

They're not able to stay home all day by themselves.

And like I said, I have like a behavior worker and some other services that they have, but those people can't be a daycare.

So, I'm not really sure.

I'm fortunate that I have a partner that I live with and so I'm not going to be homeless.

You know, a year ago, if this had happened, I had my own house payment, I was single and I would have lost my house.

And I'm not sure what else would have happened.

Grady: Possibly us.

Shannon: Well I'm not going to lose you for sure.

Ruby: Yeah.

Grady: Well actually, if you don't, if you can't take care of us you will.

Shannon: I mean, that is like a valid concern though, for a lot of parents, is that if you can't provide the services in your own home, or there's nobody else that can provide them, then they may go have to go into a facility.

And that's a really scary reality for a lot of people.

Melissa: Well, Shannon, Ruby, Grady, thank you so much for joining us.

Shannon: Yeah.

Thank you for having us.

Kids: Bye.

Davlin: And as we're having this conversation, we're still waiting to find out how Congress might change Medicaid funding and how that might impact services on the state and local level here in Idaho.

For the latest on those congressional actions, check out coverage from our friends at PBS NewsHour.

And for Idaho political coverage, visit IdahoReports.org Thanks so much for watching.

Narrator: Presentation of Idaho Reports on Idaho Public Television is made possible through the generous support of the Laura Moore Cunningham Foundation, committed to fulfilling the Moore and Bettis family legacy of building the great state of Idaho.

By the Friends of Idaho Public Television and by the Corporation for Public Broadcasting.