GOP state lawmakers are raising alarms about the financial health of Arizona’s program for residents with developmental disabilities. The chair of the House Appropriations Committee, David Livingston, accuses the governor’s office of allowing spending on the DDD program to exceed the amount set aside for it by roughly $100 million.
A big part of that appears to be the Parents as Paid Caregivers program. This COVID-era program allows parents of minor children with disabilities to essentially be paid by the state to be their children’s caretakers.
There’s a shortage of people to take care of this population of kids; that problem was made worse during the pandemic, when many people were nervous about allowing other people into their homes.
We have two perspectives on issue, starting with Livingston, a Republican from Peoria, and Brandi Coon, who is a caregiver for her son with cerebral palsy and epilepsy.
David Livingston: 'We will have to put restrictions on' the program
DAVID LIVINGSTON: As appropriations chairman, my primary job is to balance the budget for the House and the Senate and the governor and be in that team. The PPPC program is the one that you just asked me about, and the governor's team literally spent over $100 million more than they were allocated in the last 12 months on that plan, and that's why we're having so many problems.
MARK BRODIE: So what is the solution, do you think? I mean, how, how do you think these families should be trying to get care for their kids?
LIVINGSTON: So that, that's a really hard thing because these kids and these families really love this program and it really helps them. It allows moms and dads to get paid to take care of the disabled kids because they can't get outside services because it's not enough people employed to come out and help the kids.
We will have to put restrictions on it. We just can't grow our program by $100 million a year without ramps and guard rails. So we've talked about a whole bunch of things and, and nothing decided but maybe we have to limit who gets into the program.
Maybe you have to be a citizen for the state of Arizona for one year. Right now you can move to Arizona and get benefits the very next month. Maybe we have to cap the total benefits. Maybe we need to cap the number of hours per week. There's a proposal to do maximum 40 hours a week paid. We may have to lower the payout rates on some of these, all of those things we're in discussions with and others.
BRODIE: Would you imagine that those changes, whichever go into effect, would those be prospective or might you be reducing benefits to people who are already getting them?
LIVINGSTON: Well, kind of both. I don't think we would go backwards on anything unless there was fraud that we know of. But I think existing mom and dads should expect that they should have some type of reduced benefits at some level. We just don't know what that's going to be yet.
BRODIE: So you referenced the fact that there really aren't enough caregivers, you know, or or service providers to help these kids. So I guess, what would you say to parents who, who will ask you. “what are we supposed to do without this money that we'd be getting?”
LIVINGSTON: And that, that, that's a difficult question because it isn't an easy solution. You know, this program started under COVID and it was like, OK, providers don't want to go out to people's homes, but the kids need services at the homes. Here's a way to do that. And the feds paid 100% of it.
And last year, the feds stopped paying 100% of it, and now they're not paying anymore. And the state just can't absorb that. I mean, five years ago, that this wasn't a, even not out there, but you get, you just can't eliminate the program either. So, and, and there's no way we'll grab enough people to do it. And frankly, some of the people that were doing the job, the mom and dads don't trust having these people come to the house and do this.
So it's, it's very difficult. I feel for the families.
BRODIE: I'm curious sort of on a philosophical level, what you consider the state's responsibility to these, these families and these children to be, like, what, what do you think the state owes this group of people?
LIVINGSTON: I, I think we, I don't know if owes is the right word, but I think we, we need to show respect. We, we need to say, look, we, we are trying, but we can't do it all. And, and you don't want the state doing it all either.
So we're listening to them, we're talking to them. I've talked to lots of moms and dads. I've done a lot of phone calls and a lot of Zoom meetings, and some of them have ideas on how to reduce expenses, too. And, and we're trying to incorporate all of that.
And, and capping the number of hours per week of the services that we pay for at home, it's, it's one of the answers. Is it 40 hours, is it 30 hours? I don't know. But there, there will be a cap of some type on that. That would be one of the changes. And, and most of the parents I've spoke to, I think that's a reasonable one, too.
Another one is, we'll probably limit how often families can switch providers, the, the, the agencies that they use. We don't want parents going to agency, to agency, to agency trying to get the highest payouts, and there's very few that do that, but there is some. And, and that's a little fix also to help prevent kind of the fraud side of it.
BRODIE: Do you get the sense that there is a lot of fraud in this program?
LIVINGSTON: No, not a lot.
BRODIE: Is there a way, do you think, for the state to incentivize more people to become providers? And I know the state pays them just like they pay the families, but I wonder if there, if that would be advantageous for the state to have more non-parent caregivers for this population of kids?
LIVINGSTON: I, I think we could do a little more there. We could promote it more within the community colleges and those type of things. I think people that want to become nurses or PAs and those type of things, we, we could maybe have an incentive that, hey, they do this for a year or two while they're going to school, too, and get paid to do it.
So they start learning how to deal with kids and disabled kids. Even if that's not their specialty, whatever the, even a dentist, I mean, anything in health care, I think those are the type of people we want doing this. So that's a good idea. We've talked about that. We're trying to figure out how to possibly do that.
BRODIE: Does that save the state money though, because the state still pays, my understanding is the same, the state still pays providers, you know, the, the caregivers the same as it does parents? It's just a different entity getting the money, right?
LIVINGSTON: Exactly. So no, it wouldn't say, but even now, even with $100 million of additional expenses going to that, not all the kids are getting the services they may need. And that's why it's just so complicated.
BRODIE: Yeah. What can the state do, I guess, to try to make sure that, you know, as many kids as possible get the kind of care and services they need? Because to your point, there are kids even with this extra money who aren't getting it, and even some of the ones who are getting some care probably aren't getting all of the care that they could probably use.
LIVINGSTON: Yeah, I, I think the doctors and the people we use that set guidelines on what type of care and how much care, they have to realize we have financial constraints, too. And, and we want to make sure the right kids are getting the right services at the right level. And that the program really wasn't set up to do that. It was like it, almost anybody could sign up for almost anything with a couple little sign-offs.
And I, I think we need to be a little more careful on that eligibility. And we may have to, you know, wait a year or two before we allow anyone new to come in the program, too. That's another thing that's on the table. And I think we need to focus on the kids that have the most needs versus the kids that have just a few needs.
Advocates for those with developmental disabilities have been trying to convince Livingston to hear a bill that would allocate supplemental money to this program, before next fiscal year’s budget is completed. Livingston, though, says he doesn’t think that’s going to happen, and an effort to bring the proposal up at a committee hearing yesterday was unsuccessful.
We also reached out to the governor’s office for comment on this; in a statement, Gov. Katie Hobbs said in part: “Extremist legislators are weaponizing a routine part of budgeting to force ‘hurt’ for Arizonans with developmental disabilities and their caregivers.”
Brandi Coon: 'We also need to understand the counter-costs that we're preventing'
One of those advocates pushing for action is Brandi Coon. She’s a mom and caregiver; her oldest son has cerebral palsy and epilepsy and requires a wheelchair and other equipment. She’s also a leader in a caregiver support group. She spoke with The Show about what she's hearing from her community about the situation going on with DDD and the Parents as Caregivers program.
BRANDI COON: So the general sentiment from other caregivers in our community is that they are extremely worried, stressed and confused about the entire process and the threat of DDD funding being terminated by May or June of this year or you know, drastically reduced.
Navigating the legislative process is extremely difficult for most people, let alone those who are doing 24-hour caregiving on top of it.
BRODIE: Are you a part of that program?
COON: I am, yes.
BRODIE: So like what would it mean for you if you were not able to, to collect that money from the state anymore or if they made some kind of changes to it?
COON: So it would mean a few different things, one of which, it would put our, you know, household in some financial difficulty trying to meet ends meet, because my son's care requirements don't go away overnight. They are still there.
I would be doing similar work, so he has, you know, his bathing and care and transfer needs met, but it would mean that I am no longer employed in that position, so doing that extraordinary care for free.
BRODIE: Have you had any success in the past being able to find a provider to come to your house to help take care of your son?
COON: I have had some success with finding caregivers for my son. Typically, I am pulling from my own immediate family or friends, people we attend church with, to fill those caregiving roles. I am by and large extremely flexible with the people that we work with. And I fill in the gaps on a weekly basis when they're unable to come at their scheduled times or they have their own family emergencies.
The ability for state agencies to find competent and reliable caregivers for the majority of the DDD population is extremely difficult. Often the wages are at or lower than typical entry level jobs, and obviously caregiving and providing personal care to individuals with disabilities is a lot more stressful, a lot more work than jobs you can get, you know, working at a grocery store or fast food restaurant.
BRODIE: Are there any changes to this program that would work for you that, that you would be OK with? Things like maybe capping the number of hours per week a parent could be reimbursed for or things like total benefits or or maybe lower payouts, things like that, things that that legislators are, are talking about potentially doing. Like are there, are there changes that that you would advocate for as a way to maybe keep the program going but also deal with the, the state budget?
COON: Yes, and that has been something I've personally shared with multiple representatives. So AHCCCS and Medicaid are coming out with some safeguards around the Parents as Paid Caregivers program. That was scheduled to come out when this program was made permanent, but is going into effect in 2025.
And those two things are a 40-hour cap for parents as paid caregivers, and that will, even if the child qualifies for extraordinary care above and beyond 40 hours, the parents of minor children will be limited to only 40 hours per week of care per member.
The other thing that's going into effect in 2025 and AHCCCS is already ahead of this trying to ensure that all hours that they authorize through DDD are qualified as extraordinary care. And what that means is it's any care or task or goal that a child of a similar age with typical development would not be able to do.
BRODIE: Does that cap work for you? Like, is that, is that a change that, that seems reasonable to you?
COON: I do think that 40-hour cap is a reasonable safeguard for the program. I do think there are a few situations I've heard of the families with very high needs children in rural areas who could benefit from flexibility in that rule, but I think by and large that is a reasonable accommodation we could make to this program to ensure budget cuts are kept in mind as we ensure disability services are in place for those who need them.
BRODIE: So how do you reconcile sort of the needs of this program and the fact that it has over the last, you know, number of months spent more money than expected, how do you reconcile that with, you know, the and the needs of families like yours for this program with the need of the Legislature and the governor to to balance the state budget?
COON: Yeah, so the need to balance the state budget is a high priority and something that also the citizens of Arizona should be mindful of and engaged with. My perspective and understanding with DDD services and the cost increases is that we also need to understand the counter-costs that we're preventing by having comprehensive DDD or home and community-based services.
There's several research studies out there that show that institutionalization, more hospitalizations, higher group home percentages within our population causes costs for Medicaid to increase. And so by our state Legislature fully funding disability services and in the home and community, they are actually saving hundreds of millions of dollars in medical care and hospitalizations for these same individuals.
BRODIE: So you mentioned the May 1 situation here, and I know that you have asked for lawmakers to take up a supplemental funding bill for, for this program through the end of this fiscal year. It doesn't frankly sound like that's going to happen.
So I wonder what level of optimism you have that things will continue to run smoothly and even if, you know, the program does continue, you know, let's say the Legislature passes a budget in June, that's potentially a month or more of there being uncertainty or maybe a gap in coverage here?
COON: Yeah, it's hard to describe what the fallout would be if there was a gap in coverage for members that qualify for DDD services. It it's not just the Parents as Paid Caregivers program that we're discussing, it's therapies, it's group homes, it's day programs, it's early intervention, it's nursing care, so things that people rely on on a daily basis for their physical well-being and supervision and safety will be immediately impacted if that is turned off overnight.
