Ep 8: Facing Uncertainty in Caregiving: IEPs, Social Security, and In-Home Nursing, Oh My!

[00:00:00] Erica Stearns: We’re caregivers, and we are resilient. When we unite, we are a really strong force. I have time and time again drawn strength from my peers. Just the IEP conversation, the social security challenges we’ve had, I would not have been able to get through and find a resolution to any of those if I hadn’t turned to my peers.

[00:00:23] Welcome

[00:00:39] to Caffeinated Caregivers where we have coffee dates and conversations about all things related to caregiving. I’m Erica Stearns and I’m here with Alyssa Nutile as usual. Alyssa, what makes us qualified to talk about All things related to caregiving. 

[00:00:57] Alyssa Nutile: What does make us qualified? Okay, a couple of things, right?

[00:01:01] First of all, both of us are parents to one or more, in your case, children who are disabled and have medical complexity. We do kind of look at those into like, maybe not two different categories, but like one’s a subcategory of the other, right? Like we talk about that a lot. Yeah, 

[00:01:20] Erica Stearns: I think that’s fair. 

[00:01:21] Alyssa Nutile: The actual, like, medical event.

[00:01:24] Part of our life is the thing that comes up pretty much all the time for us. What else, Erica, what else makes us qualified to talk about this? 

[00:01:34] Erica Stearns: Oh my goodness. Well, we both grew up with disabilities. Uh, when you talk about like the subcategory, I grew up with what was considered at the time, a medically complex condition, and you grew up with more of a physical disability and we both.

[00:01:51] Navigated the medical system as children and now we’re doing so as adults for our children and ourselves. Although that gets put on the back burner a lot as we’ve been discussing in our private conversations. So yeah, what makes us qualified? Lived experience. Pretty unique lived experience. 

[00:02:12] Alyssa Nutile: So the lived experience is very important.

[00:02:15] We should probably say this though because I don’t know if we’ve ever actually. said this part explicitly, I can’t remember if it came up in our first episodes or not, but both of us work professionally in some sort of advocacy capacity within the caregiver and disability community, right? So I just want to point that out because that’s not like the only thing that Makes our experiences valid or whatever.

[00:02:40] But I do think it’s worth stating that like, we spend a lot of time, not just dealing with like our lived experience, but a lot of other people’s lived experiences in the work that we do. Both like through direct conversations, conversations. research, reading, all of that kinds of stuff. 

[00:02:57] Erica Stearns: Yeah. And that’s really important because it allows us to really have a broad understanding of the diverse needs of those in our community.

[00:03:04] And I, for one, have been humbled by a lot of the relationships and conversations that I’ve been able to build through my professional career, but it wouldn’t be possible truly without first finding this community. Speaking of caregiving though, what is fueling you as a caregiver today, Alyssa? 

[00:03:24] Alyssa Nutile: As a caregiver.

[00:03:26] Okay. Well, a little context. So my husband is a professor of biology and every year for like the last, it’s only been two years, but it feels like forever for the last two years. He goes with his students and like some other professors and stuff too. I forget what it’s called. It’s not marine biology, but it’s like one of those kinds of trips where like they go with a bunch of students during their college spring break to like, look at fish and like track lizards and stuff like that.

[00:03:55] So anyway, he’s doing that. 

[00:03:57] Erica Stearns: Honestly, that’s like my Lisa Frank childhood dream goals. It’s the 

[00:04:02] Alyssa Nutile: Bahamas, so it probably looks a lot like that too. They saw an octopus. They saw like a four foot long grouper. Wow. He’s like, the water here is like so clear. I’m like, don’t tell me about the water where you are.

[00:04:17] So he does that every year. He’s gone for about 10 days. Again, we don’t have any family nearby. We have like some neighbors, but like I don’t, I don’t have any backup basically to take care of Gemma other than our nurses. And we only get, I say like we only get, we get 44 hours of nursing a week, like, which is pretty good, but it’s basically, it covers my work hours.

[00:04:41] It doesn’t cover really much at all like respite. So just me and my two kids and my dog, who’s very needy. And we’ve been doing this for eight days now, and he just still hasn’t come back for another three. So I am tired. I could list a lot of things that are fueling me. Mostly it’s two things. One, I’ve had ice cream for dessert every night since he’s been gone, and I have no regrets at all whatsoever.

[00:05:10] Good. Good. And two, I’m just reading, like, just the, like, most mindless books that I can get my hands on. Just, like, anything that will help me turn my brain off that I don’t have to think about too hard. Just that. That’s what I’ve been doing. What about you, Erica? What’s fueling your caregiving right now? 

[00:05:31] Erica Stearns: I asked that question, but I’m realizing I was not prepared to answer it, so I gotta be honest.

[00:05:38] I’m feeling very unfueled this week, and that kind of culminated into a full on crash and burn yesterday, where it took the day to just really do absolutely nothing with my kids. I mean, I, we sat around, we snuggled, we needed a cuddle puddle, like a full day cuddle puddle. And that’s what we did. And it was glorious.

[00:06:03] And I feel better. I definitely woke up this morning feeling recharged. So My kids are fueling me. 

[00:06:10] Alyssa Nutile: That makes sense. We’ve been doing a lot of night snuggles around here. Like, you know, there’s three of us and we have a whole couch, but like all three of us will be on like one couch cushion together, very snuggly.

[00:06:24] Also makes my legs go numb because like. Together they weigh, you know, like over a hundred pounds now too. So I have like all of that. 

[00:06:32] Erica Stearns: Did you bring any sort of liquid fuel with you today? Because I did and I can’t wait to tell you about it. 

[00:06:39] Alyssa Nutile: I did, but it’s not that exciting because I didn’t have time. My dog was being a huge diva.

[00:06:45] He’s twelve and a half to thirteen years old, and he’s a big dog. So, he’s so old. And he just, like, does not care. Like, he is living his best old man dog life. He’s like, I do whatever I want, whenever I want. He’s like, I don’t have forever left. Like, I’m just living for every day right now. Stopping to smell those flowers, yeah.

[00:07:05] I love that for him, but he’s also, like, kind of turned into a huge diva, like, related to that. Because what, what am I gonna do? You know, like, what am I gonna do to, like, punish him? I’m like, oh, you’re old, like, I’m not gonna yell at you or whatever. 

[00:07:17] Erica Stearns: Mm hmm. 

[00:07:18] Alyssa Nutile: So he just does whatever he wants. So anyway, I was late to this meeting and I didn’t have time to make the smoothie that I wanted to make.

[00:07:24] So I just have kombucha again today. It’s gingerberry. It’s the blue one. Oh, that looks good. It is good. It’s, like, a little tart. A little vinegary, nice little mix of both. What do you have? You’re very excited to tell us. I 

[00:07:38] Erica Stearns: mean, I’m excited to tell you because I actually brought coffee and it’s cold coffee.

[00:07:43] It’s cold brew. 

[00:07:43] Alyssa Nutile: Oh, 

[00:07:44] Erica Stearns: okay. I was gonna say intentionally cold coffee or? I take that back. It’s just cold coffee because it sat in the coffee pot overnight and then we put it in the refrigerator. So what I tell you this week has been rough. It’s been the kind of week where we made coffee at three o’clock in the afternoon and then when I went to make coffee the next day there was still coffee in the coffee pot from the day before.

[00:08:04] So I was like, ah, cold coffee tomorrow. So yeah, uh, but It’s cold and it’s coffee and it’s not tea this time. It’s true. Are you so proud? 

[00:08:15] Alyssa Nutile: I am so proud. I’m a little bit worried. Oh, you should be worried. Because we’re recording at like mid to late afternoon on a Sunday. And I know that you like to go to bed early when you can.

[00:08:31] Erica Stearns: So you should absolutely be worried. This is unhinged behavior coming from Erica at the moment. Well, as we will talk about you, you will see why folks, you will see why 

[00:08:43] Alyssa Nutile: on that note, we do have a theme for today and it’s going to be a little conversational. We’re going to tell some stories. We’re going to tell you what’s been going on in our life, like why we’ve disappeared for the last few months.

[00:08:54] And the theme is probably a theme for all of 2024. Like let’s be honest. 2024 just feels like a collective, like, breath holding, but the theme for today is uncertainty around caregiving. 

[00:09:08] Erica Stearns: Mm hmm. 

[00:09:09] Alyssa Nutile: And particularly uncertainty around caregiving in 2024. We are probably towards the end of the episode gonna talk about what’s going on in a variety of states.

[00:09:20] Some of the caregiving systems that are in upheaval in a variety of states across the country. But we’re also just going to talk about a lot of the upheaval and uncertainty going on in our own lives. Like, just for clarity, just to set the table for you guys, because it’s been a lot. 2024 has already been a lot.

[00:09:41] a lot. And we covered some of it in our January episode. We covered the chaos that was our collective Christmas times. And that’s not all of it. That’s just That was just like the first half of January. We have a lot more. Erika, do you want to start? What’s been going on with you? 

[00:09:59] Erica Stearns: Oh my. It’s been a whirlwind, you know.

[00:10:02] I, uh, There’s been a lot going on in my life personally and it started actually before Christmas back in October thanks to a Social Security income redetermination for my children that went completely awry. Really? and resulted in receiving some bad information from an employee that just really led us down a just scary path for a while.

[00:10:33] And I think the moral of the story that I want to share about this without going into too many details, but I I took an employee’s statements as truth when in my gut I knew what they were saying didn’t quite align with policy that I had read before, information I was given years ago when we first started this process.

[00:10:57] And out of respect, I didn’t question it. I don’t know, Alyssa, do you ever feel like you go back and forth between advocating? Like that’s something that happens to me a lot where. I’m like, sometimes I’m just so sure of something that I advocate and it turns out I’m wrong. Yeah. And then that unfortunately takes the wind out of my sails for times when I feel in my gut very right, but I’ve lost confidence to advocate.

[00:11:27] And then it ends up really hurting us. That’s happened in the medical system. That’s happened in with the social security situation. And, you know, I have regrets. I have regrets that I didn’t listen to my gut. And took a long, lot of energy. It was incredibly stressful. So, moral of the story, if something doesn’t feel right, find someone else to ask.

[00:11:51] How did I find the right person to ask? I turned to other caregivers. Having other caregivers, having a community like this proved to be one of the most beneficial resources I had in that moment. I think that’s all I really want to say about that because I honestly am still so stressful. nervous and traumatized and uncertain that the resolution we’ve reached is permanent because, um, yeah, just like things can change so quickly.

[00:12:20] It’s kind of scary. 

[00:12:21] Alyssa Nutile: And there’s less recourse in that situation than I think you would hope, right? Like, there wasn’t like this whole process laid out for you that was like, do all this and like all these things. Like there’s an appeal process, right? But like, some of that appealing is like, having the right information to be able to like, make your appeal in the first place.

[00:12:41] So when someone tells you like, oh, you’ve broken the rules. And here’s the rule that we think you’ve broken. That kind of derails the whole situation in a lot of ways. 

[00:12:51] Erica Stearns: There is no recourse. There’s no recourse against the Social Security Administration. No, they’re just like, Oh, sorry about that. Yeah, they, they re approved us, everything got fixed, but there’s no paying us back for what was lost in our case.

[00:13:08] In other cases, there might be, depending on the situation. 

[00:13:13] Alyssa Nutile: Well, our situation is not as dramatic, but it’s kind of been like, I guess this is like the end of like a drawn out process. 

[00:13:23] Erica Stearns: That’s even worse. The slow burn. 

[00:13:25] Alyssa Nutile: Yeah. So we have our favorite nurse. She’s our newest nurse, but she’s our most experienced nurse.

[00:13:32] And she’s just like amazing with Gemma and she usually comes on Thursdays and Fridays. and she’s worked in home care for a long time and she works like a lot of overtime and she worked for two different nursing agencies and so this fall she decided that like she didn’t want to work like you know 60, 70 hours a week anymore so she was going to take a different job and she probably wasn’t going to be able to like work with Gemma anymore so she did go do that for like two weeks and then she did not like that job and she was like I’m coming back and the nursing agencies I mean, they’re basically like, they’re unbothered by the paperwork, whatever.

[00:14:12] They’re like, sure, totally. I don’t even know if she was like all the way out of the system by the time they did that. So in the meantime, she had been traded out for another nurse who was very nice, and she was like, fine. You know when like the vibe is not quite the same? Listen, 

[00:14:26] Erica Stearns: having the right fit really matters when it comes to nursing.

[00:14:31] And it means so much when you find that nurse that has the right vibe that is very hard to replace. It’s not something you can train. Right? 

[00:14:42] Alyssa Nutile: So. No, you can’t. It’s just personality. It’s like friends or, you know, it’s, there’s all kinds of things that like make people like the chemistry matches or whatever.

[00:14:52] And so this other nurse, like didn’t as much. So as soon as I found out that like our nurse was coming back, cause she texted me, I texted like the nurse scheduler and was like, we want this lady back. And that was like kind of a whole thing. I felt bad like letting the other nurse go. I assumed she found more hours, but her living situation was like a little bit precarious in the sense that like she had just moved back to the area.

[00:15:16] So she was like getting settled here, getting settled there. Like her schedule was like crazy anyway. So it was, it just wasn’t like a good fit for us. Speaking of uncertainty, because it’s not cool when you. I understand that, like, things come up and I don’t hold it against any of our nurses, but it is really hard to plan your life around someone else’s, like, chaotic schedule.

[00:15:38] You know, especially if you don’t know if you’re gonna have, like, help on any given day. Like, maybe they show up, maybe they don’t. 

[00:15:44] Erica Stearns: Yeah. 

[00:15:44] Alyssa Nutile: So we were dealing with that. We got our favorite nurse back. It was awesome. It was great. It’s been, I don’t know, four, five months, things have been really good. And then last week she told us again that she is actually quitting this job because, and I understand why, like she’s going to do nursing primarily for someone that she’s related to.

[00:16:08] So I get it. I totally get it. I am so sad about it. Oh yeah. I’m so sad about it for so many reasons. First of all, because. For the first like year and a half that we had nursing, we did not have a consistent Thursday and Friday nurse. So we had hours, but we didn’t have a person to cover them for a long time.

[00:16:27] Not that was like, you know, with any regularity. So there was that until we got this favorite nurse. Like that was always a, are we even going to like have all our hours covered? Then, you know, we got our hours covered finally. The last like six months I’ve been like, touch and go, and now, now we’re back to square one, it feels like.

[00:16:45] And she’s like, I’ll stay on, I’ll stay on as like PRN. And part of me is, so PRN is kind of like on call. So basically like when she has hours or availability that like match up with our hours, she can come in and take those because someone that she’s working with has different like qualifying hours than we do.

[00:17:02] So they’re in the summer, you know, she’ll be free and stuff. But then that puts us back to like, well, she could do PRN and that would be amazing to like cover hours for certain times, but that doesn’t help us with our like Thursday, Friday, regular, like nurse. problem. So I’m still back to like, okay, well, can I schedule meetings on Friday?

[00:17:22] Can I do work on Friday? Can we go run errands on Thursdays and Fridays? Like all these things, I just don’t know. Like you never know. And then I bring up the nurse thing first, but then I’m going to go ahead and like, jump right into this. So my daughter, Gemma, she’s turning five at the end of this month.

[00:17:43] So she’s finishing up her second year of preschool. She was in early intervention. Now she’s gone ahead and transferred to an IEP, like in the preschool system. Next year, she’s going to go to kindergarten. So we’re in the process now of doing her like to the school district transition, which for her is going to hopefully mean one of two things, either one, she gets a waiver to go to the like special education private school in the area.

[00:18:10] That’s incredible. It’s amazing. Her needs are not, there’s no classroom in the school district that we live in and it’s a pretty big like well funded school district just because it’s the biggest district in like the Erie area. But they don’t have any classroom that’s like even close. to like actually meeting the needs that she has on a day to day basis.

[00:18:32] So this other school, they have a lot more equipment, they have a lot more aids, it’s a fairly regular occurrence too that like the school district will pay for waivers for these kids, especially when they don’t have the resources to deal with them in the district so that they can go to this other school.

[00:18:49] And I’ll be clear, that’s the only way she’s going to be able to afford to go to this other school. Like I cannot pay tuition to send her to this school independently on her own. Our other option would be to do like home tutoring, right? So where everybody just comes to our house with her nurses to do like her therapy and her special education teacher and all of that.

[00:19:08] We’re deciding which one of those. is the best option. And honestly, I know it’s never like a settled thing, but not having a consistent nurse like really throws a big wrench in that because right now she goes to preschool and so when she needs to miss a day of preschool, I’m just like, she’s not coming today.

[00:19:27] And that’s the end of it. They don’t really take attendance. When she’s in kindergarten, she’ll have certain, like, attendance protocols that she’ll have to follow. She’ll have, like, a lot more, you know, checkboxes that we have to do so that we don’t get in trouble with the school district and all of that.

[00:19:42] Also, the nursing agencies are much more concerned about getting her nursed so they don’t get in trouble with the school districts if she’s missing a lot of school. And that makes me nervous. Because then, how do I say this, I love our nurses and we have been blessed with like some really, really good nurses.

[00:19:59] Not all nurses all the time are really, really good though, and there is a certain pressure for the nursing agencies to just fill those slots so they can get the kids to school, so that they don’t get in trouble. Right. And that makes me nervous because they’re not going to be at my house, like, if something like that were to happen.

[00:20:16] So it’s like, I need a nurse now. I want these hours to be filled now, so like, it’s someone that I can be in our home with, that I can get to know them, like, through the spring and the summer, so that when I send her off to school in the fall, you know, I feel good about who she’s going to school with, because she’s not going to be able to advocate for herself, and she’s not going to be able to, like, say, You know, she’s non speaking, so like, she has all these things that like, other people have to do for her, they have to communicate for her, and she needs people who can understand her well to do that in those settings.

[00:20:48] So it’s just very uncertain. We go from having three people who have been with her for years, who all like, understand her, like, know her little nuances, every little thing that she needs, like, All of that to now, we don’t have anybody on the end, but then it’s like, even if we get a nurse to fill that void, it’s still going to be going through like all that time of like rebuilding trust and all that relationship building that you do before I even feel like I can let her go out of the house with this other person.

[00:21:20] Yeah. So that’s kind of thrown a wrench into our IEP transition because, you know, like when they come to me and are like, which would you prefer? Being in the school or being at home. I’m not sure because I’m like, I don’t I don’t know this school that they have does actually have nurses there too. But like, you know, they’re not going to be with Gemma regularly.

[00:21:39] They’re not going to know like her nuances. They’re not going to like understand really how to communicate with her. I’m not going to know them because they work at the school. Like they don’t come to my house every day the same way. So it’s a lot of I don’t know. It’s a lot of question marks a lot of like, I’m not I’m not sure what the best course of action is here.

[00:21:56] Okay. And I’m mostly just really sad that our nurse left at the end of it. 

[00:22:00] Erica Stearns: Yeah. I mean, that’s the whole other thing that is this giant weight of grief for losing someone who’s gotten to know your kid. And it reminds us, you know, speaking to that theme of uncertainty that there’s might be a lot of people coming and going in our kids lives.

[00:22:19] They’re going to encounter this situation over and over. But yeah, just that grief of losing good support and then the daunting task of finding it and rebuilding trust with someone. And all the while, you’re living still with that uncertainty that at any point, you can lose that support again, right? At any point.

[00:22:42] Alyssa Nutile: And our kids are not as flexible and adaptable to new scenarios. as like your typical kid, right? So being with new people is going to take them generally a lot longer, right? Because it’s a two way street. One, the nurses or whoever is with them has to get to know them, but two, they have to get to know the nurses too.

[00:23:06] And like, our kids know. They know who is with them and who is dealing with them and whether or not they like those people or trust those people in their own way. So, yeah. Gemma, I mean you’ve seen her, you’ve seen the like side eye that that girl gives, but like she will hold out on you for a while if she’s not sure about you.

[00:23:24] And that’s not great in an educational setting. It’s not great in any setting, but it’s definitely not when she’s supposed to be in an environment where she’s learning and interacting. So yeah, it just, It starts to feel very lonely again, right? Like it just feels very isolating to be like at the end of the day, the only constant in our kids lives, because there are so many people in professional positions in their lives, the only constant still ends up being us a lot of the time.

[00:23:55] And that’s hard for a few things. Obviously for the care aspect and whatever, but it’s also people that are coming and going from our lives too. Like even with like this particular nurse, you know, like she’s my friend and my son sees her every day too. And he really likes her. And so, you know, like you build these relationships and then they have to go away.

[00:24:16] And that’s just kind of like the nature of things, but it is very, it’s very isolating and it’s very lonely. 

[00:24:21] Erica Stearns: It’s hard to, because we want them to Be happy and have successful lives and get better pay if that means going somewhere else like as a friend Do you want that and also? You’re grieving what that means for you and your child You know when you mentioned just how it takes time for kids to really warm up to someone new In my experience, it’s all about routine.

[00:24:50] It’s, it’s about my children understanding that this new person is a part of their routine and can trust that person to be reliable in that routine. I think it just, it means a lot for our kids to have the people around them that understand them, know those looks, know what the side eye means, and also knows how important staying on these routines are for them.

[00:25:14] I’m really sorry, Alyssa, that, listen, we could dedicate like a whole episode to unpacking the grief of losing this kind of support, and we should, but let’s talk about the other part of this, which is this idea of making this really big decision about school and not really knowing for certain which one is going to be more successful for your, your child, but also for your family.

[00:25:42] Just thinking about the fact that the public school system has not made classrooms inclusive enough or supportive enough for our kids with these disabilities. It’s so disappointing, right? Like that means automatically your daughter’s not going to go to the same school as her brother. My kids aren’t going to go to the same school as their cousin who isn’t the same grade as Margo.

[00:26:04] Like how dreamy would that have been for them to go to school together? 

[00:26:09] Alyssa Nutile: Yeah, my son asks me, is Gemma gonna come to school with me next year? And I was like, she’s not. Because even if she did go to the school district, she wouldn’t be in his school because his school doesn’t have the classroom that would have kids with like her level of need.

[00:26:26] She would be all the way on the other side of town. 

[00:26:28] Erica Stearns: There’s a lot to advocate for with that and it’s really unfair and unjust. We can fight and fight and fight for this or that, but the actual ideal version of education for our kids is not on the table in these conversations. 

[00:26:43] Alyssa Nutile: Okay, Erica, tell us a little bit more about this because I am not the only one navigating through IEP things right now.

[00:26:51] We’re in different phases. You’re in it though. Oh yeah. So our kids are a little bit at different points in the educational system and so I’m worrying about like how do we get set up? How do we like start this whole journey? You’re in the middle of it though and you are facing some unexpected or were presented with some potential unexpected changes.

[00:27:14] Is that a good way to describe it? 

[00:27:17] Erica Stearns: Yeah. I do think so, I mean, I feel like I’ve always kind of expected some challenges with the school system because that’s just historically how it’s been for parents and caregivers who have children with IEPs or 504s. We definitely ran into some of those challenges in the last week, which was hard.

[00:27:41] And so once again, I turned to our community. I turned to my peers who are further down the road on this journey. And I started asking questions. I turned to organizations that are in our state that are in many states. They’re parent and training information centers for parents whose kids have IEPs. You know, I turned to them and asked them some hard questions.

[00:28:05] What are my rights? How do I properly and respectfully disagree in an IEP meeting? I had some great advice. It led me to having some tough conversations and for right now, I’m satisfied with the resolution, but there’s so much uncertainty with this resolution. It’s also dependent on. my kids showing progress in the next year and that’s something we can’t ever like control.

[00:28:32] So this week has just been such a heavy reminder of the fights and just how many battles there are for us caregivers to fight on behalf of our children in order to have their needs met. In a lot of ways it’s been a really depressing experience for me as I also happen to turn another year older this week and Just this daunting reality of I’m not going to be able to do this for them forever.

[00:29:03] Someday I’m going to have to trust that others might care for them when I’m gone and nothing about the system right now is instilling that trust in me. And that is just a really hard thing to reckon with. So, sadly, uncertainty has been our theme this week. And we’re not the only ones. I mean, like, these are just a few things that are happening in our personal lives.

[00:29:33] But the reality We’re hearing from so many of our followers across the world who are up against their own versions of uncertain circumstances. 

[00:29:42] Alyssa Nutile: We have. We’ve been hearing from lots and lots of people in our community. And we talked to some about this in our episode from January, the one about careers.

[00:29:52] There’s a lot of upheaval happening right now in caregiver support across the country. A lot of it is sorting out from, like, post COVID era, right? Because there were a couple things that happened during, or there were quite a few things that happened during COVID, but a couple of big things related to caregivers and their kids is, one, a lot of, like, when you would get services through either Medicaid or Social Security, any of these, like, types of programs.

[00:30:20] You typically have a reevaluation period that you have to go through every so often. I think for most of them, it’s like around one to two years. That all got put on hold during COVID. So basically whatever you got during COVID or whatever you had before COVID, whatever supports you had for yourself and for your child, that just got to stay indefinitely.

[00:30:40] There were no changes to it. They were like, let’s just keep this ball rolling. The other thing that happened was lots of extra funds. for all of those programs. Now in 2024, everybody is reevaluating everything and the budgets are tighter. So there’s lots of states that had paid caregiver programs, they had more robust in home nursing programs, they had more robust educational supports, and they’re all, I shouldn’t say all, many of them are pulling back those programs now.

[00:31:12] And in some places, public outcry you. pressure from their constituents and politicians has caused some of these people to like roll things back a little bit. I know in Virginia in particular they’ve had a little bit of success at maintaining their caregiver program through those sorts of avenues, but in lots of other places.

[00:31:33] That hasn’t happened. We talked about Indiana last week. I think they are one of the states that’s gotten like the most attention, but there’s changes to caregiver programs happening in Texas. There’s changes happening in Iowa to the educational system. Washington, Oregon, Washington. I don’t even know if it’s like changes in Washington or if it’s just the program has been consistently bad and now politicians are basically just like, well, it is what it is.

[00:32:01] So, you know, I think what happened there was like, there was a lot of traction for some legislation that would really improve things. And parents and caregivers were essentially told like, yeah, that’s too expensive. We’re not going to do that. So we are in this time where like things are changing.

[00:32:19] Sometimes really rapidly, like in the state of Indiana, for example, their entire paid caregiver program is going to shut down the way that it runs currently in July, which is just a couple of months from now. So, everybody who’s using that program is either going to have to transfer to a different program that’s going to function differently and also pay differently, or figure something else out.

[00:32:41] And that’s assuming that the other program that they set up also stays functioning. I mean, there’s no guarantee that those programs stay forever. 

[00:32:49] Erica Stearns: Yeah. I mean, I think that’s the part that’s really disheartening is that a lot of times it feels like when there needs to be a budget cut or there needs to be a reallocation of funds, time and time again, I’ve seen that happen to the most vulnerable populations.

[00:33:08] To people with disabilities, to children who need special education services, to, well, caregivers who need nursing support. We’re going through that as well. I mean, it’s like, how does that make us trust that the world, that our society, actually wants to care for kids like ours through their life? It doesn’t.

[00:33:30] It breeds a lot of insecurity and distrust and fear for their future. 

[00:33:36] Alyssa Nutile: There was a New York Times article that came out about the Indiana situation at the beginning of this last week, and it was kind of just a breakdown. It was a little bit all sidesy, if I’m gonna be honest. 

[00:33:49] Erica Stearns: No, I have a bone to pick with that writer.

[00:33:51] Okay, 

[00:33:51] Alyssa Nutile: yeah, alright. 

[00:33:52] Erica Stearns: I think the part that really frustrated me is that what they failed to explain is that, you know, it’s not as though the funding wasn’t already projected, it was that it was utilized. Because all of these families need a nursing, right? All of the families who utilize paid caregiving, they all are qualified for nursing.

[00:34:14] Alyssa Nutile: They all qualified for nursing hours prior to the paired caregiver program being instituted. So the state would have been paying out those hours. Just to a nurse instead of a paid caregiver, if they could find a nurse. But the fact is, and this is very similar to the situation in Washington and many states across the country is that since they’re so short on nurses, they just didn’t have to pay that money.

[00:34:37] Right. 

[00:34:38] Erica Stearns: I think if anything, it should be just a stark reminder that like, these are unmet needs that exist. And this is why that funding is important to set aside to support. these children and their caregivers, but unfortunately they look at it a different way. 

[00:34:55] Alyssa Nutile: On that note of our kids and us as their caregivers always getting put last, here’s a fun quote from Alice Burns.

[00:35:03] Sorry, Alice, I’m calling you out, but you’re in the New York Times article, so it’s too late. Associate director of KFF’s program on Medicaid and the uninsured asked, What would be sacrificed if Indiana continued to spend so much on the caregiving program? Again, a reminder here that while she’s talking about the caregiving program for paid family caregivers, technically that is money that should already be earmarked for nursing.

[00:35:26] Right. So like, it should be money that’s set aside one way or the other. 

[00:35:31] Erica Stearns: And let’s face it, if it was used on nursing, it would be more because nurses get paid more for it. 

[00:35:38] Alyssa Nutile: Most family caregivers get paid like maybe 15 an hour, oftentimes less. Anyway, this was her quote as for like where the money would come from, what other programs would have to be cut.

[00:35:49] So, “wraparound services for pregnant women, dental care for children. What are the services people will have to do without? I don’t know, Alice. They will have to probably do without services.” That’s because you, as a state government, don’t seem to be interested in funding broadly any of those services. Not because all of those people don’t need all of those programs.

[00:36:09] We all still have the needs. Yeah. Yeah, you can’t just like pick and choose the needs. It’s so baffling to me. It’s one of those where like, our kids can’t advocate for themselves, right? So it’s just us advocating for them. And, I’m going to go on a little tangent here, but there is that aspect too of like, well, they have parents that can take care of them.

[00:36:31] So at the end of the day, it all just gets pushed off onto their caregivers and parents. And like, that’s just part of it. That’s just how they have to deal with it. But wrapping back around to the beginning of our conversation, at the end of the day, most of the time, the only consistent figure in our kids lives are us.

[00:36:53] By ourselves and possibly our partners, right? So like that’s two people to take care of a kid that in a hospital setting would have a team of like dozens of medical professionals, right? Like we’re giving hospital level care, in our case I would say, to both of our children, our three children, and without any of these programs we get no support, no assistance whatsoever at all from anyone.

[00:37:16] But they’re like, well, you know, the parents will do it. So that’s what it is. That’s what it comes down to. It’s not that our kids don’t deserve it. It’s just that they can do the bare minimum by not supporting families as a whole. And they do. 

[00:37:32] Erica Stearns: Yeah, that’s a choice that’s being made and it hurt to realize that our systems of support are working against us.

[00:37:42] Alyssa Nutile: And coming back to our theme again really quick of uncertainty, this lack of support makes every somewhat uncertain situation that we find ourselves in that much more precarious, right? Like it makes it that much harder to navigate, that much harder to weather, that much harder to come back from because like.

[00:38:00] We don’t have enough support. So we’re already like sitting on a stool that only has three legs instead of four. And so like, whenever we lose like one more piece, the whole thing just tumbles down. 

[00:38:12] Erica Stearns: Yeah. Is the goal to have our kids just put back in a hospital and unfortunately maybe become more compromised with their health?

[00:38:20] I don’t know. It just feels. I hate to be so negative, so I should probably just stop on this tangent, but it all goes back to just making me feel like many people in our society do not value the lives of our children and do not want to invest in their well being. And that, that’s just hard to fight against.

[00:38:40] When I think about the fights that we have to fight, that’s a hard battle to win. 

[00:38:45] Alyssa Nutile: Totally. And on the note of, we haven’t so much talked about it here today in this episode, we’ve been talking a lot about it on Instagram, that idea of like, What you do for families, or I think more specifically what you don’t do for families of disabled kids, also affects those kids.

[00:39:02] It affects the entire unit, right? Because The thing is, what I’m hearing in a lot of these situations is basically they’re just wearing parents down to get fewer and fewer supports for their kids because we just get worn out. We just get really tired. We just get overwhelmed. We have all these other things that we have to deal with because like again, we still have families and households that we have to run in like jobs that we have to try and maintain and bills that we have to pay.

[00:39:29] And that pretty much all comes second to our kids already, but it is still stuff that we have to do. And these like little fights that the government has like these big agencies to be able to fight all the time and we just have us for the most part. That’s the thing, like they just like whittle pieces and pieces off until kind of like you said, like what’s left.

[00:39:50] And I know that’s very negative. I’m not trying to be negative today, but I think You and I have been through a lot of upheaval in the last couple of months, and it has been really tiring. And like, we are the case study for the situations that we’ve been talking about, that like, We both need more support and we don’t like having all of this uncertainty.

[00:40:09] And at the end of the day, it does feel like it negatively impacts our kids. Right. Because you know, like what if you didn’t know to like ask for something different? Like what if you didn’t quote unquote advocate in the right way at your IEP meeting? What if you don’t have time? What if you don’t have time?

[00:40:28] Erica Stearns: Yeah. How do I fit in time to read all these books and become an expert suddenly on social security and IEP and I just, yeah, it’s exhausting. And when you don’t have support, you can’t fight. And that almost feels like, in my opinion, it feels like that is the goal for them to just unfortunately break us through exhaustion.

[00:40:52] Then we won’t have any, we won’t be able to advocate. We’re caregivers and we are resilient. When we unite, we are a really strong force. I have time and time again drawn strength from my peers. Just the IEP conversation, the social security challenges we’ve had, I would not have been able to get through and find a resolution to any of those if I hadn’t turned to my peers.

[00:41:20] So while it may feel really negative, it may feel depressing and exhausting. We’re not alone in this. 

[00:41:28] Alyssa Nutile: I also want to note that here’s a little bright spot. Is there a bright spot? There is a bright spot. I mean, I don’t know about like, there is, there is room for pushback, right? Because like, first of all, the New York Times published an article about the situation in Indiana, because there have been parents going to the state house.

[00:41:47] every week since this budget situation has been going on, and the cutting of the caregiver program has been going on, and taking their kids and just talking to anybody who’s basically there that will listen to them, including national reporters. Something similar happened in Virginia. I think there was like a little bit more political pressure leveraged in that situation, but something very similar.

[00:42:08] It doesn’t work in every state, it doesn’t work every time, but it works. little by little, right? Like again, if we remember the Katie Beckett program wasn’t only done by like Katie Beckett, like in her family, but just a few caregiver families can make a really big difference. Like if you know where to push the buttons and whatever.

[00:42:30] And the other thing is, even if some of those families, we say things like, Oh, just a few families make a difference, but kind of back to your point, that’s not really true, right? Because like, they’re drawing strength that they’re drawing information, they’re drawing experiences, they’re drawing support from all of these families around them, who, even if those families can’t be the ones to go, to the state house.

[00:42:52] Even if those families can’t be the one to contact senators, they are giving their peers like tools and information so that when you come across a family that can do that, they have all the tools that they need to actually get the things done that benefits our whole community. So every time you see like one caregiver face or one family or one kid or whatever, that’s worth remembering too.

[00:43:16] Like there are dozens and dozens of families that similar caregivers behind that oftentimes that are helping push that movement forward too. 

[00:43:24] Erica Stearns: Agreed. I’ve definitely felt propelled forward by others and I, I’ve seen that time and time again, even if your family isn’t the face of the bill or the person on the podium speaking, you’ve probably been in some way inspiration and motivation and contributed to that cause in that conversation.

[00:43:44] So, 

[00:43:45] Alyssa Nutile: Where all the big wave underneath and whoever that face is, is like the little surfer on top, but you can’t have one without the other. 

[00:43:52] Erica Stearns: Exactly. Oh, I love that analogy. Well, Alyssa, we took a long break, things are still uncertain, but what’s not uncertain is that we have each other, we have this incredible community that keeps coming back and fueling us.

[00:44:07] We will be 

[00:44:08] Alyssa Nutile: back. We’re navigating the uncertainty and we will be back to all of the themes that like we have been working on behind the scenes. Even if we haven’t been able to talk about them as much as we would have. We have a few things that we want to cover going forward. We’re going to cover different types of support that we need.

[00:44:26] We’re going to cover in home nursing with some fun people. Hopefully with a guest for that one. We have a lot of things. We got a lot of ideas. 

[00:44:33] Erica Stearns: We’re hustling over here, guys. We are hustling. We have 

[00:44:36] Alyssa Nutile: more ideas than time, which is not new, but you know, it is what it is. All right, Erica, do you want to, do you want to say as 

[00:44:44] Erica Stearns: usual?

[00:44:45] I just want to say may the force of caffeinated caregiving be with us both until next time. Ciao.