Episode #19: Generating Policy Solutions to Protect Children with Complex Health Care Needs During Emergencies

Our new MCH Bridges podcast episode addresses the critical importance of planning for and responding to the needs of women, children, and families, particularly those requiring complex care, during public health emergencies. The efforts described in this episode reflect the panelists' personal and professional experiences advocating for and implementing a state-level policy change to do just this. 

Tune in now to this detailed discussion about what it takes to implement a policy change aimed at ensuring that children with the most complex health care needs are less vulnerable to the impact of natural disasters and other emergencies. This example demonstrates how family advocates and staff from multiple state agencies partnered to create an amendment for the Medically Fragile Technology Dependent Medicaid Waiver that enabled critical power generators to be purchased with the use of waiver service funds.  

This episode is a part of AMCHP’s Building Resilience from Lived Experience anthology.

Resources

• Building Resilience from Lived Experience: AMCHP’s Collection of Public Health Emergency Preparedness and Response Stories  
• Home Generator Information for MFTD Waiver Families (University of Illinois Chicago's DSCC) 
• Public Health Emergency Preparedness and Response Checklist for Maternal and Infant Health (AMCHP, Centers for Disease Control and Prevention)   
• Prepared4ALL: Whole Community Inclusive Emergency Planning (Association of University Centers on Disabilities) 
• Find a Family-to-Family Health Information Center (F2F) or Family Voices Affiliate Organization (FVAO) 
• Parent to Parent USA 

Transcript

Ben Kaufman: [00:00:00] Welcome to MCH Bridges, where we lift up innovative ideas and inspiring stories from [00:00:15] people in the maternal and child health field. My name is Ben Kaufman. I'm the Associate Director for Workforce Development and Capacity Building at AMCHP and your MCH Bridges guest host. Today, we are going to address the critical importance of [00:00:30] planning for and responding to the needs of women, children, and families, particularly those requiring complex care during public health emergencies. 

The efforts described in today's episode reflect the panelists' personal [00:00:45] and professional experiences advocating for and implementing a state-level policy change to do just this. Now, I'd like to introduce my co-host for today's episode, Molly Hofmann. Thanks for being [00:01:00] here, Molly.  

Molly Hofmann: Hi Ben. Thanks for having me. 

Hi, everyone. My name is Molly Hofmann, and I am the Director of Care Coordination Systems Development and Education at the University of Illinois Chicago's Division of Specialized Care for Children. [00:01:15] The Division of Specialized Care for Children is commonly referred to as DSCC. DSCC is a statewide organization serving children and youth with special health care needs. 

We operate four care coordination programs across the [00:01:30] state and serve as the state's designated Title V organization serving children and youth with special health care needs. One of the care coordination programs we operate is called the Home Care Program. This program serves individuals who [00:01:45] receive in-home, shift-based nursing care as a Medicaid benefit. 

Many of these individuals are enrolled in the medically fragile, technology-dependent, home and community-based waiver. The care that many of the individuals in this program [00:02:00] require is complex. Many have trachs, home ventilators, G tubes, and central lines. This program partners closely with many from the Illinois Medicaid program, especially the waiver and ancillary service [00:02:15] bureaus. 

In August of 2020, a large derecho thunderstorm hit Illinois. This large, hard-hitting storm had high winds and produced about 15 tornadoes in the [00:02:30] Chicagoland area. Thousands of people lost power, and many were without power for several days or more. Following the storm, a parent advocate, Susan Agarwal, compiled some feedback that she received from other DSCC home care families [00:02:45] about their experience with power loss and expressing interest in home generators being able to be something that could be purchased with the use of waiver service funds. 

This feedback was sent to the Division of Specialized Care for Children, after which many [00:03:00] people started to review and consider the great points that we received from many of the families. Research was done to see what other states had in place related to the use of waiver funds being used for generators. 

And then additional research was begun on how this [00:03:15] could work in Illinois. In early, 2022 Federal CMS approved a waiver amendment for the Medically Fragile Technology Dependent Waiver that enabled generators to be purchased with the use of waiver service funds. And we're here to tell [00:03:30] you more about that today. 

Ben Kaufman: Ben here, and you're probably wondering why we shared all those details upfront. The what of this story is immensely important, but we are dedicating today's episode to the how. What time, effort, [00:03:45] leadership, and coordination did it take to amend a Medicaid waiver based on families' real experiences? What can folks in other states and territories learn from what our colleagues in Illinois made possible? 

We're not just scratching the surface in this episode, but [00:04:00] diving deeply to better understand the nuances of change-making. when the consequences of the status quo could be dire.  

Molly Hofmann: So today we're going to have a discussion with a group of panelists that will ask a little bit more about each of [00:04:15] the individuals' experience and roles and feedback throughout the process of looking to have generators be an approved way for service in Illinois. 

Stephanie Leach: I'm [00:04:30] Stephanie Leach and I work for the University of Illinois Chicago's Division of Specialized Care for Children and I'm the Associate Director of Systems of Care.  

Courtney Kerfoot: Hi, I'm Courtney Kerfoot with the University of Illinois Chicago Division of Specialized Care for Children, [00:04:45] and I'm an Integrated Program Support Specialist. 

Susan Agrawal: Hi, I'm Susan Agrawal. I'm the Director of the Family-to-Family Health Information Center at the Arc of Illinois, and I'm also the founder and leader of [00:05:00] MFTD Waiver Families in Illinois.  

Pam Winsel: Pam Winsel, I work for HFS, the Healthcare and Family Services, the Illinois State Medicaid Agency. We are responsible for oversight of the waivers and we work in coordination [00:05:15] with Courtney, Molly, and Stephanie at DSCC. They oversee the day-to-day operations of the program.  

Ben Kaufman: I will just say to each of you, including you, Molly, we are very grateful for each of you taking the time to share your piece of this story. [00:05:30] I'm really looking forward to getting into it. So with that, I am actually going to pose the first question and I'm going to start with Susan. 

Molly shared a little bit about the sort of precipitating incident here, [00:05:45] but could you share a little bit more, uh, what were families experiencing and how was awareness of those experiences raised?  

Susan Agrawal: Thanks, Ben. That's a great question. So I'm actually going to go back a little bit further [00:06:00] because this idea started with my personal experience with another storm we had. 

Uh, apparently we have a lot of bad storms in Illinois. Um, but we had a storm back, I think it was around 2013. And this [00:06:15] was when my, my daughter was still alive. She passed away about a year after this storm. Um, and she had a lot of medical technology. So pretty much everything that Molly listed in her description of technology, ventilators, [00:06:30] IV pumps, oxygen concentrator, plus a whole fridge of intravenous medication. 

All of this requires a lot of power. In 2013, we had this massive one-day storm when it just rained. I can't even [00:06:45] imagine how much it rained that day, but it was so much rain that the Chicago River flooded. And we live about five blocks from the Chicago River. And so while the river water didn't quite make it to our house, it flooded everything in the [00:07:00] area, which meant that all the sewers backed up and there was a foot of water in everybody's basement in my entire neighborhood. 

So because there was a foot of water, it went over our outlets and we lost power. [00:07:15] We also lost heat, we lost hot water, and of course a lot of damage as well. But we were, we were out of power, heat, and hot water for a couple of days. And we realized really [00:07:30] quickly that our medical equipment only lasted about six to eight hours at most.  

And so I started thinking at this point, we really need. to have some sort of better [00:07:45] plan in place than what we had, which was no plan. So obviously a year after that, my daughter died and she was very sick during that year. So it was something that kind of went on the back burner for me. And then we had this big [00:08:00] storm a few years later, 2020. 

And that's the one that knocked out power for 800,000 families. And I was fortunate enough to not lose power during that storm, but I know many families who did, and we [00:08:15] chatted on the phone, we chatted through social media, whatever forms of communication we were able to make work during this time to make sure everybody was okay. 

And a lot of families were out of power and a lot of [00:08:30] families did not have any option at all to restore that power quickly or to substitute for that power with something else like a generator or even to go to a family's house or a friend's house because everybody was out [00:08:45] of power in some of these areas. 

So it was a really big problem and there were several families I know who ended up having to take their kids to the hospital because there was no other option at the time. So at that point, [00:09:00] we decided as a group to discuss this and come up with some ideas of things we thought would help. So we did a very informal survey and it was about 40 families, I think we surveyed and what we found out [00:09:15] is that a lot of these families, we had about 90 percent of families had lost power. 

In that past year, a lot of them had lost power more than once, and we had about a quarter of families who had lost power for [00:09:30] more than a day. So that's quite a lot of families. And that was, that was prior to this storm. So it's only become a bigger problem since then. So the biggest thing we came up with is families need generators. 

[00:09:45] And we thought that, uh, this was a very compelling ask because the cost of a generator is a few thousand dollars, but it's not a lot of money. And if you think about the families having the [00:10:00] hospital as a backup plan, the cost of a night in the hospital is likely to be about the same as the cost of a generator, maybe even more than the cost of a generator. 

So it seemed to be something that was cost [00:10:15] effective and would be a great option for these families. And we did a little research on on our own and found that this was something that other states had done and we decided to just write it up and send it over to our [00:10:30] friends at DSCC who have been great partners with families and are wonderful at getting families involved and listening to families and seeking out their comments. 

So we just wrote it up and sent it over. Thinking we'll see [00:10:45] where this goes, if anywhere. And we were super thrilled with the feedback we got, uh, because everyone was really receptive and really understood exactly why this was so important to families. So that's kind of my part of the [00:11:00] story. After that, I turned it over to DSCC and they made all the magic happen. 

Molly Hofmann: Thanks, Susan. You are very kind in your words about our partnership, but we definitely appreciate how you're always willing to come to [00:11:15] us and help compile feedback and pull that together. And I know many of the families in which you work with appreciate the same. 

So, Stephanie, the next question that we have prepared [00:11:30] today is somewhat directed at you and is about the research that you did looking at other states and exploring what was out there and just trying to understand a little bit more how you decided that a waiver amendment might [00:11:45] be an option for Illinois to explore. 

Stephanie Leach: Yes. So after receiving Susan's feedback from Susan and other families, we went to work, particularly Courtney and myself. We first consulted with Medicaid and [00:12:00] we said, is this feasible? You know, if we do the research, can it possibly work? The answer was yes, by all means, if other states are doing it. And the need is that great, let's do it. 

And fortunately enough, Susan had included some other states and etc. in the letter that [00:12:15] she sent to DSCC regarding generators. So we started out with those states and kind of researched the parameters around generators, what kind of technology other states used to support the generator of the waiver service. [00:12:30] We researched how generators were put into other waivers and what that looked like. 

And we also researched the types of generators. Many, many, many states actually do have generators as a waiver service. So that's why we decided it [00:12:45] would be just fit right into the medically fragile technology-dependent waiver that we get to operate on behalf of Medicaid. So we did our research. And we talked it over with Medicaid multiple meetings later, we kind of had our plan of attack. 

So [00:13:00] what we decided was with our meetings with Medicaid, particularly Pam here as a guest, we thought that Illinois was well equipped that we didn't have to establish many other parameters like other [00:13:15] states. We decided that in order for it to become a waiver service under environmental modifications that we already had our parameters and that was basically if you were in the medically fragile [00:13:30] technology-dependent waiver and you were complex enough to be in that waiver, you were complex enough to be able to be afforded a generator if that was your choice. 

The other parameter we had was within the environmental modification waiver service, the [00:13:45] families are afforded $25,000 every five years. And that can be an array of service such as a vehicle modification, a home modification, pest control. And we added generators within that service. So the parameter [00:14:00] of spending was already there as well. 

So, in partnership with HFS, we decided that we would talk to the federal CMS about having those be the parameters already. We did research certain [00:14:15] medical equipment. We did research a certain amount of wattage, square foot of home, but we felt that in order to fully support the families, keeping the child safe in the home, also keeping the caregivers safe in their home with lights on [00:14:30] and everything they needed to be dependent on. 

We thought our parameters were already there with some services that we already had.  

Ben Kaufman: You know, this is less of a question, but more just an appreciation that you and your team [00:14:45] sort of embraced administration almost as a platform for pursuing justice, right? You found like how to make the details work and you weren't afraid of that. 

Can you talk a little [00:15:00] bit more? And this is a question for everybody, right? Cause this was truly a partnership. So how did you all navigate? That partnership were, were there barriers, were there things you had to work through? Was the solution just obvious to everybody? What was the secret sauce of the partnership?[00:15:15]  

Stephanie Leach: I think all roads led to one, Ben. The fact that the purpose of a home and community-based waiver is what? To keep the participant, in this case, the children who are part of our waiver, to keep them home and safe in the community that [00:15:30] they desire with the family. Right? So, if generators could help with that, in addition, as Susan mentioned, could be a cost savings in the end, too. 

I think it was a win-win for the state of Illinois. And the research [00:15:45] showed it. Courtney, I'm going to call out Courtney here can talk a little bit more about her research. She really went in depth with other states and we found barriers that other states had and a lot of it had to do with the wattage of generators and kind of having those parameters [00:16:00] and that that was a true barrier and we got on different family forums and other states and could see that and we just figured that we didn't want to even need to address that. 

Courtney Kerfoot: Yeah, I can add a little bit on those barriers. Um, it was interesting to take a dive into what other states were [00:16:15] doing and see that for the most part, if they approved generators, there were a lot of stipulations with that approval, which we like Stephanie already kind of talked about. We didn't want to apply those limitations. 

Because especially with the [00:16:30] medically complex population, things can change. So we wouldn't want to say, well, because you are on this specific piece of medical equipment, um, you need this specific wattage of a generator. Well, what if something changed, um, in a few months time, [00:16:45] and then they were stuck with a generator that wasn't appropriate. 

So it was just better to kind of get rid of those limitations. And it was just, it was really eye-opening to see the limitations that were out there. Um, so I was, that was one area I was really proud of, that we were able to [00:17:00] make sure that we didn't have those added as a, as a barrier.  

Susan Agrawal: If I can just jump in here, I actually, in my original letter, made a long list of things that we thought would be needed because we [00:17:15] expected that there would be these kinds of barriers put up or that there would be restrictions based on diagnosis or the type of technology you have or the type of housing you had whether you owned it or rented it [00:17:30] and I was absolutely thrilled that they just kind of threw all of those away and said, we're just going to go with pretty much everything. 

So yeah, I, I have to say, I'm glad they just left it wide open. It works better for [00:17:45] everybody. And, I fully agree that if you are in this program, your child already has medical technology and already definitively needs power every single day. And there really is no reason to put any restriction on it. 

Ben Kaufman: It sounds [00:18:00] like. There was consensus around sort of honoring the intent of the program in the first place by limiting the restrictions or a number of restrictions that could be placed on who can access a [00:18:15] generator. So I see the obvious connection between the work that you all did and the perspectives of the families that were shared to sort of generate the momentum here. 

As you were going through this sort of [00:18:30] highly administrative process, was there sort of ping back with family leaders? What was the dialogue like during that process?  

Stephanie Leach: There actually wasn't a lot of ping back, and honestly, I think it's because [00:18:45] we weren't having many barriers at all in the end. So therefore, honestly, we thought that we were doing the right thing in terms of like making everybody happy and listening to the feedback that Susan had given [00:19:00] us. 

We didn't need to say, well, we're going to go with this wattage. Are you okay with that? Because we knew we weren't going to look at the wattage. We weren't going to look at, you know, renting versus owning the home, et cetera. So we didn't really have a lot of feedback honestly in this and at that [00:19:15] administrative level until the decision had kind of been made to say this is what we're going to do. 

Susan Agrawal: I would agree with that. I mean, I kind of tend to be overly thorough with my comments. And so they knew exactly what we wanted and what we expected. [00:19:30] And so mostly I just kept in touch with Molly to see where we were in the process and how things were proceeding and what the timeline would be. And she kept us informed as to the timeline. 

And that was really the extent of it. [00:19:45] And it was just, you know, a matter of jumping through the bureaucratic hurdles and waiting for everything to be approved.  

Molly Hofmann: I think the feedback and the ideas from families and individuals served through the program is obviously very critical, but I also [00:20:00] think that part of what helped to make this a successful policy change also has to do with the partnership and the working relationship that we have with you all at Illinois Medicaid. 

Would love for you to share just a little bit more with everybody about [00:20:15] kind of your experience working within the waiver side as to what it was like to go through the waiver amendment process to add generators.   

Pam Winsel: So when DSCC approached us about adding the generators [00:20:30] to the waiver, as Stephanie mentioned, we had several meetings and part of that was reviewing the feedback from Susan and the parents. 

And also the research that Courtney and Stephanie had done, and we realized that [00:20:45] sometimes less is more. If we wanted to put a whole lot of parameters in, then that would probably cause us a whole lot of problems. So we went with the approach of just putting the generator in as a piece of equipment, as Stephanie had [00:21:00] previously mentioned under our specialized medical equipment category of service in our waiver, without any kind of stipulations or any kind of specifics that had to be documented to make it as simple as possible. 

Sometimes waiver amendments, when you go in to change, [00:21:15] you know, how you're administering your waiver. Sometimes can be very complex, but this, when we went in with the less is more, um, a lesser description, which. worked very well for us. It was very simple. CMS did not come back with any [00:21:30] questions about our proposal on our proposed change. 

We just added it to our service definition and CMS approved it without any kind of any kind of problems. 

Molly Hofmann: [00:21:45] Okay, so the next question I know, Courtney, you've probably had a pretty significant role in this part, but it has to do with kind of the non-traditional providers that are involved when we're talking about generators as a service. How do you think the experience was in [00:22:00] outreaching and engaging with the different providers related to the service? 

Courtney Kerfoot: Yeah, that's a good question. I think overall it was well received from a lot of providers. We started by identifying our current service providers [00:22:15] for, uh, electrical modifications and check to see if they would also be able to provide generators. And then we looked statewide at providers that we didn't have currently as an enrolled provider. 

And we put [00:22:30] together a letter, um, that just outlined our program, provided an overview of the MFTD waiver and the population that we serve in that waiver, um, really stressed the importance of how those electrical modifications and [00:22:45] generators allow those that are medically fragile to be cared for and, uh, may be, uh, able to stay at home. 

And then we outlined the process. Of how to become an approved provider and then what that would look like [00:23:00] if they did become approved, we kept it as concise as possible. So just one page in hopes that it would be easier for them to read it and understand it. And we ended up getting quite a few more providers [00:23:15] enrolled that way. 

And I think we have over 30 providers that have been providing generators so far. So I think it was well received. And we still reached out to care coordination teams across the state to say, Hey, if you, you know, [00:23:30] within your communities, if you have any providers that you think might be able or willing, let us know. 

And we had a team that would provide the outreach, um, and also help the provider along the way with getting enrolled too. So went really well. 

Ben Kaufman: [00:23:45] So on that front, were there any surprises if you worked to get providers enrolled? Good? Bad? Neutral? Anything that you found to be surprising?  

Courtney Kerfoot: Honestly, nothing stands out to me. Which is probably a good thing. [00:24:00]  

Stephanie Leach: I agree with Courtney and just to add some numbers to what Courtney was explaining, we had 10 vendors that we currently worked with that we reached out to to see if they could add generators as part of their service package, and we actually sent out 51 [00:24:15] letters across the state of Illinois to try to generate more providers to be able to provide generators. It's quite the process to become an enrolled Medicaid provider. It sounds easy, but there's a lot of steps to it. And, um, our team kind [00:24:30] of handhold all of those vendors. Some of them I would consider the mom and pop. I remember when Larry, the electrician signed up, we were all high fiving and Larry was very interested in the generator service and he still is providing the service, um, actually, um, in the [00:24:45] Northern part of Illinois, and has put a lot of generators in homes for the families that we get to serve. So it was a heck of a process, but not a lot of barriers because literally we had a little team here at DSCC that was just returning a lot of phone [00:25:00] calls, a lot of questions, and then also again partnered with Illinois Medicaid on enrolling those new vendors and that in the Illinois Medicaid system as providers. 

Ben Kaufman: And that's part of the reason I ask, right? Because every, you know, if you. [00:25:15] If we're in a conversation here, oh, there were really no barriers, but there were no barriers because there was so much work happening behind the scenes. And then like Courtney, you were mentioning an intentional decision to have a one very concise, you know, one pager about what [00:25:30] this was. 

So again, I want to give you all credit for like, it's not that there were no barriers because there were no barriers, there was no barriers because some very important work was happening and that's kind of again what we're trying to uplift with all of this [00:25:45] because all of these details matter if we're talking about folks who are interested in replicating this or similar initiatives in different places. 

Molly Hofmann: The assisting people with the enrollment into Medicaid is another key [00:26:00] element of that, right? We all know that enrolling as a provider is rather difficult, as Stephanie mentioned, and I do think that there's a lot to be said about saying, okay, we understand that you're not the typical type of provider that would be enrolling. 

So let us [00:26:15] really be there to help walk you through each of the steps that are required for that. I think that that made a big difference as well, and helping. to prevent barriers from providers being there but not willing to provide the [00:26:30] service.  

Stephanie Leach: Agree Molly, and it took a lot of time. The waiver was approved January of 2022 and we started reaching out to the providers that Courtney mentioned in February of 2022 and it took a while to [00:26:45] get responses. 

And then the follow-through and then the process. So it wasn't, it wasn't a quick process, but it, and it was ended up being a successful process. It just took a little while and we did it literally the month after the waiver was approved.[00:27:00]  

Molly Hofmann: So now might be a good time to kind of segue into some of the. post waiver approval steps. You shared a lot about the communication that was happening with providers. [00:27:15] Uh, but could you share more about the process to communicate that this been, had been approved to families and to others that would be working with families to help facilitate them utilizing this new service? 

Courtney Kerfoot: Families were notified about the generators [00:27:30] being a new waiver benefit in March of 22, and we waited until we had, of course, the approval, but also the policy and procedure and training for our care coordination teams. And once all of that was finalized, we also [00:27:45] developed a tip sheet. Was just a one-pager that could go to families as well to make it easy for them to understand, um, the process. 

And so, yeah, all of that occurred in March of 22. Also, care coordinators contact families every 30 days. Uh, [00:28:00] and so a lot of effort to get that information out to families, um, was a big part of, uh, the care coordination process of ensuring care coordinators were sharing this information with their families during that 30-day contact. 

Molly Hofmann: Thanks, Courtney. [00:28:15] Susan, do you have anything that you would like to add as far as your perspective and working with the families during that time post the service being made officially approved?  

Susan Agrawal: Sure. As soon as I found out everything was approved, I started letting [00:28:30] everyone know. We have a private Facebook group. 

I think we're up to more than 500 of the families in it. And this isn't a huge program. So that's a big chunk of the families. I started letting people know there. So they were getting the [00:28:45] reinforcement of the message, hearing it for me as well. And we posted the tip sheet that was mentioned as soon as that became available. 

And. At least from my perspective, every family I knew at that point went and started the generator [00:29:00] process. And it did take a little while, especially at the beginning from families. You know, I'm the person who hears them complain a lot. You know, they're willing to vent to other families and let them know when there are problems. 

And other [00:29:15] than a few delays, I did not really hear many complaints. I actually heard families being really happy about being able to get the type of generator they wanted that would really be able to run their entire [00:29:30] household system, um, as well as the medical equipment that was safe for their families. 

A few of our families had to have either additional electric work or additional gas work done. And that was included for the [00:29:45] most part as part of the package. And so they were all thrilled to have a really safe system that would work for them.  

Molly Hofmann: Susan, you, you mentioned a good point. As you talk about some of the kind of nuances that went into the [00:30:00] installation of the generator, which is. 

Maybe something that's worth bringing up, because there was a bit more complexity to some of the requests that were coming through than what were anticipated or identified in the initial research to make this change. [00:30:15] Stephanie, do you want to talk a little bit about kind of the lessons that were learned kind of through working through some of those initial more complicated requests? 

Stephanie Leach: Yeah, sure. There were some bumps and bruises in terms of questions that we were getting from both [00:30:30] families, care coordinators, and then, of course, the wonderful service providers. A few examples of this would be moving the electrical box for the whole house unit too far away from the generator, needed to be closer to the generator, and would waiver service [00:30:45] funds be, you know, used for that. 

And, um, we worked things out with Medicaid and talked over and anything. We were constantly adjusting the policies and procedures, um, kind of, as we hit these hurdles that we went across, uh, another example would [00:31:00] be for a permanent, uh, generator. Those aren't supposed to be set really just on the ground. 

They need a concrete pad. And would the waiver pay for the concrete pad for, does it just the generator to be on? So there were things like that, that we, you know, [00:31:15] you don't know what you don't know. And we weren't sure. So as we worked with the vendors and the families more, we were kind of able to adjust administratively in terms of just laying all out there for our care coordination staff of what we worked out with Medicaid [00:31:30] to be able just to say the yeses and the nose. 

And there were a lot more yeses because in the end it was what was needed for the generator to work and then to support the participants staying in their home safe along with their families and caregivers. [00:31:45]  

Molly Hofmann: And family choice was a big factor in some of that, too, because the individuals who are enrolled in this waiver have $25,000 every five years that they can use for that full range of waiver service options. 

And [00:32:00] so, if a family knew, for example, that they were going to have a vehicle modification that was going to take up, A large chunk of their waiver service funds and they wanted a smaller generator that costs less money than that was an option for them. But if you had a family that was [00:32:15] interested in the larger generator that was going to do more to keep the whole family able to successfully maintain care in the home and stay with their waiver participant, then that was their choice to see a large chunk of their waiver service [00:32:30] funds then going to support that. 

But definitely those were some things that were a little bit unexpected after the go live of this came up, but again, the feedback from families and that partnership back with Medicaid to kind of [00:32:45] talk through the pros and the cons to what the different requests look like was really critical through that piece. 

Ben Kaufman: I want to sort of raise something explicitly here. So [00:33:00] we talked about both with the, the providers, but also with families, the sort of communication and technical assistance burden and the dialogue that had to occur in order to make sure that folks were taking advantage of the policy option. And then elsewhere [00:33:15] in the conversation was sort of raised like, oh, well, there's different considerations for folks who own versus rent their homes. 

How else did equity considerations factor into particularly the implementation period, or did [00:33:30] things arise that you didn't anticipate that has prompted sort of thinking about how, how to strengthen all the related sort of implementation protocols?  

Molly Hofmann: What comes to mind for me, I think with equity-related [00:33:45] to this is that the time frame developing the idea of putting the purchase of generators as a waiver service fund.  

You know, that was considered as something that was being made available for all individuals who qualify and are [00:34:00] enrolled in that waiver, and everybody who is in that waiver has the same amount of waiver service funds that's available to them for that five-year cycle. 

I think equity really kind of comes into play, though, when you're thinking about the big [00:34:15] picture of that $25,000 can go a lot further for some people than what it can for others and part of that might have to do with factors such as does the family have additional private insurance because this is one waiver in [00:34:30] Illinois where parental income is waived and it's the income of the child that's used to determine income eligibility for this particular Medicaid waiver. 

So, you know, availability of insurance, whether they rent or own their [00:34:45] home, being a factor that came up kind of more in the post-implementation pieces, uh, the same with some of the complexity around other pieces that went around the it. installation of the generator, like did you live in an [00:35:00] older home where the electrical wiring required some updating and therefore that project was becoming more expensive to you than what it would have been if you lived in a newer home and and so on and so forth. 

But I think from the perspective of [00:35:15] thinking about the policy and thinking about equity related to that policy change. It was really there in the beginning saying, we want this to be something that's available for all. 

Stephanie Leach: Completely agree and as I reflect, as [00:35:30] we've gone through this whole process, the past couple of years, you know, it hasn't just been, you know, butterflies and roses, right? 

So there has been, of course, if the family rents. They have to get permission from the landlord, of course, that's in our policies and [00:35:45] procedures. But there's been a couple times where whole house generators have been installed within homes that the family owned. And then a year later, they've decided to move, right? 

And it was their choice, of course, to have their [00:36:00] waiver funds used on this. But if there's no more waiver funds available, that $25,000 every five years, and there's nothing left. And then they do move into a different house. That question has come about a couple times. So we try to help [00:36:15] the family talk to them about when their next kind of allotment of that waiver fund would be available, when that next five years starts. 

If they have a little bit left, maybe their new home that they own maybe, um, could help with a small little portable generator that's much less expensive. [00:36:30] So we've tried to troubleshoot and help them if in fact they have moved and there's not a lot left. 

Molly Hofmann: Pam. Um, this question is for you and thinking about. Others that may be [00:36:45] listening, working with state Medicaid programs and within their waiver bureaus. What feedback would you share with them about the idea of considering the purchase of generators within a waiver service [00:37:00] fund from another state as far as something that was fairly easy to be able to incorporate and to be able to allow families to utilize, or do you think it would be complex if they didn't have, uh, [00:37:15] another operating agency that you know, provides care coordination and such as we do at DSCC. 

Pam Winsel: Thanks, Molly. So each waiver is administered in different ways. It just depends on how the state [00:37:30] crafts the waiver to be administered. In Illinois, we have an operating agency who handles the day-to-day operations for all of our waivers. And we, as HFS, the Medicaid agency, you know, do the oversight and communication with the federal government. 

[00:37:45] If a waiver doesn't have that operating agency or that, that sister agency that they work hand in hand with, In the operations of the waiver, they already most likely have a process in which they approve waiver services, and they would [00:38:00] probably just follow that same pathway, you know, amend their waiver, add it as a service, and whatever service that they use, or whatever process that they use to authorize services and to provide services to customers, they would just replicate that process for the generators. 

I think it would [00:38:15] be a very simple, process to get off the ground. As I mentioned before, you know, we did not meet any kind of resistance from CMS. We did not receive any questions about our proposal. They approved our proposal as we initially wrote it. [00:38:30] And I think that it would be a very simple process just to implement and move forward with. 

Molly Hofmann: Thanks, Pam. I appreciate hearing your feedback about that. 

Ben Kaufman: What else from the emergency preparedness and [00:38:45] response space has this experience prompted you all to think about? Particularly for the families that are eligible for this waiver, but also others.

Susan Agrawal: I can jump in a bit on the family perspective, something that families have been talking [00:39:00] about a lot is extra medical equipment. 

And this is always a tricky one, because let's say you're on a ventilator, and if your ventilator dies, you're in a bind. So at times. children have been able [00:39:15] to have a backup ventilator, but some of the children don't have a backup ventilator. So this is something we've been thinking about. Do you have enough oxygen to in a form that doesn't require power to make things work. 

Do you have [00:39:30] enough backup equipment? Do you have enough extra supplies? If you had an emergency for 10 days and your durable medical equipment or supply company is not available, do you have enough on hand? So that's something families talk about a [00:39:45] lot, having extra supplies and having extra equipment. 

And the extra piece is a bit of a policy issue. So that is, that is something that we may address in the future a little bit more to see if we can get a clearer policy decision on that. [00:40:00] Families are also great at sharing. That's another wonderful thing about our families here in Illinois and us being very connected to one, one another. 

We not only share information, but we share extra supplies and extra equipment. So that works really well for families.[00:40:15]  

Molly Hofmann: The last question that we really kind of have for the group today is what do you want people in other jurisdictions who would have similar scopes of responsibility to learn from the [00:40:30] experience of this particular policy project?  

Pam Winsel: This is Pam from HFS. I always try to listen to what the operating agencies, the people that have their feet on the street, the parents, the advocates, your case management staff, [00:40:45] Molly, your care coordination staff. 

Because you truly know, you have your finger on the pulse of what these families need. You know, I'm sitting at a desk across town. You know, I am far removed from the day-to-day in and out and [00:41:00] communication with families for the most part. So I always try to take in consideration, when you guys come to us with a proposal, it's because you really believe in it, and you know it's going to help the families. And then that's, you know, what we need to do is as the Medicaid agency, [00:41:15] we need to help the families to get what they need to keep their children in their home.  

Susan Agrawal: I would just say don't be afraid to advocate. Don't be afraid to ask because the answer might just be yes. 

This, to be honest, was one of the easier advocacy [00:41:30] projects I've done because everybody was on board and everybody was helpful. Some of them are not as easy, but that doesn't mean you shouldn't try. So if it's something you feel strongly about, whether it's generators or another issue, ask and advocate, see what happens. 

Molly Hofmann: [00:41:45] Thanks, Susan.  

Stephanie Leach: And then I would just add just to listen, just to listen. I think that helps just to listen and help figure out a solution to the problem. I think that's what Courtney and I did a lot in our role, just with this generator project is we listened and brainstormed [00:42:00] and coordinated and just, just tried to figure out a solution. 

Molly Hofmann: Courtney, you want to add anything to that?  

Courtney Kerfoot: Just that things aren't always as complicated, I think, as we might think that they might be. So it might just be worth pursuing, especially with generators. [00:42:15] We found that it was a pretty simple process, so to just try.  

Stephanie Leach: I don't know if this is the right time to add this, Molly, but to date we've had 191 participants benefit from the generator service using 24 providers. 

Molly Hofmann: Yeah, [00:42:30] cost about $2.2 million here in Illinois today as well. So it's amazing to know that there's 191 families who have benefited from this new service. And we're really fortunate [00:42:45] here in Illinois that we. have been able to form a good partnership with many of our families and the individuals who we serve and who we're here to serve. 

That's ultimately our mission at the Division of Specialized [00:43:00] Care for Children to partner, help, and connect. And it's our organization's vision that children and families, healthcare needs are at the center of a seamless support system that improves their quality of life. And we love to [00:43:15] see initiatives like this that are able to be taken underway that to just make one thing a little bit easier. 

Ben Kaufman: Thank you all. It is truly, truly our pleasure to learn in a way that might be [00:43:30] different than you're hopefully used to sharing about some of the work that you do. And you all have embraced that with such vigor. I love the lessons learned that you all shared.  

Susan Agrawal: I would just say, A big thank you to [00:43:45] DSCC from the families for listening and for understanding and for putting the time and effort in because it hasn't always been as good as it is right now but DSCC has really [00:44:00] just every year improved more in their partnership with families, and we really truly appreciate that. 

Molly Hofmann: Keep it coming, Susan. You keep us on our toes. Yes.  

Stephanie Leach: We're not done yet, Susan. We're not done [00:44:15] yet.  

Molly Hofmann: Just Susan, though. She definitely represents what they talk about when they talk about family leaders. Susan has the ability to say, okay, let me assess the situation and understand, is this the experience of one or is this the experience of many? 

And what's the best way to try to elevate [00:44:30] this and think through solutions? And she does a lot of homework before she comes with feedback. So we're all appreciative of that as well. 

Ben Kaufman: Thank you all for joining us on this [00:44:45] episode of MCH Bridges. The transcript of this episode can be found at www.mchbridges.org. Be sure to follow AMCHP on social media. We hope this episode [00:45:00] created some new connections for you. Stay well, and I hope our paths cross on the next MCH Bridges. 

Maura Leahy: This project is supported by the Health Resources and Services Administration, or HRSA, of [00:45:15] the U.S. Department of Health and Human Services, or HHS. As part of an award totaling $1,963,039 was 0 percent financed with non-governmental sources. This information or content and conclusions are [00:45:30] those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the U.S. government. [00:45:45]