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What Happens When Disability Services Run Out? Lexi's Law with Brie Abate · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Sarah Kernion: Hey everyone. Welcome back to the Inchstones podcast. I am so thrilled to have my guests here today. There's a phrase of that parents of children with significant disabilities we use constantly. And it's this phrase, right? You have to advocate and be an advocate. You make the call, you have to learn the system, you have to know your rights, you have to get on these wait lists, you have to push harder and push. But what happens when you've done all of that and the thing your child still needs simply still isn't there? And so my guest today is Bri Abate, mom to Lexi and founder of Lexi's Law Family Advocacy Network. And her personal advocacy grew out of, like mine did, her family's experience trying to really self navigate this massive gap between what developmental disability services and mental healthcare are and that transition into adulthood. Because I'm preaching to the choir here. But before any law or advocacy movement, there was her daughter Lexi, and there was her as a mom trying to figure out how to keep her daughter safe, build this one precious life we have inside these systems that weren't always built for the complexity of our kids needs. So we are going to answer a lot of questions today. But specifically, you know, what happens when mothers like us are no longer here to make that phone call. Right. And the question so many of us live with all the time. So, Bri, thank you for being here and welcome to the Inchstones podcast.
• 1:28
  Brie Abate: Thank, thank you so much for having me here. I really am honored and I'm so happy that we can discuss this because that is my number one question. Fantastic. Well, go ahead. Sorry.
• 1:39
  Sarah Kernion: No, that's okay. I was just going to say that's what I want to jump into. Tell us, who is your daughter Lexi? Who is she? Beyond the diagnosis.
• 1:45
  Brie Abate: Yeah, my Lexi girl is 22 on a normal good day. She loves basketball, she loves to sing, she's happy, she loves to hug. She's my lover and she's the prettiest, greatest little girl I've ever met and I love being around.
• 2:03
  Sarah Kernion: Yeah. When did you first realize that Lexi's needs were falling into this space where the single system wasn't equipped?
• 2:11
  Brie Abate: Yeah, when she grad. Yeah, when she graduated high school and she went into transition. There's only two options. Stay home and wait till 22 or go to transition. And she's not transitioning to anything. And it's very frustrating because not every special needs kid is the same. Actually, that's the opposite. Not none of them are the same. And they want each special needs child to do the exact same program. And if they're not transitioning to anything, why are we wasting their time doing this when there could be something better or greater for them to shine and thrive? And Lexi just has not done any of the milestones that they wanted her to do. And it's been very frustrating and very sad to watch because she loves going to school, and now she doesn't even want to go because they were making her go to work.
• 2:58
  Sarah Kernion: I know what you mean.
• 3:00
  Brie Abate: It's very sad to watch that. There's no. There's.
• 3:03
  Sarah Kernion: Yeah, you know, I was actually talking. I was actually on the phone. Yeah, I was on the phone with a mom locally who has a son who's about around Lexi's age yesterday, and we were talking about this. How this forced adult programming comes. Can take the life out of these kids that are ours and become these people that were like. But that's not who. That's not who I know. That's not what actually I see inside a family life. You know what. What. As you encountered those gaps along the way, how did you experience it as her mother? What was it that was doing to you specifically as you were watching these gaps in services just continue to happen?
• 3:41
  Brie Abate: Yeah, at first I trusted the system because they're like, oh, do this. Go to therapy. Put her on this medication. Go to this. So in the beginning, when she was 18, I was like, okay, well, maybe this is. Cause it's new. Let me just see how this goes. And then I started watching and paying attention that none of that was working and no one was listening. So I kept getting roadblocks. And it was sad, and I cried a lot because I didn't really know what to do because there's no map one and two. There's no one saying, these are the things you are allowed to do. They do the opposite. They say, no, you have to be choose 22. 22, 22. And that's why I started Lexi Law, because why is there an age limit of when kids who are adults can get services? Like, it's just. Doesn't even make sense.
• 4:27
  Sarah Kernion: Yeah, so. So let's jump. Yeah. So. So there was a switch. There was obviously a switch for you. And I think. I know for my. Myself too. At some point, my advocacy, it. It. It morphed into something more than just celebrating these small wins. It was like, oh, wow. Inchstones is not just about my kids and what they're actually doing. It's about something much, much larger. And what are we trying to hammer away at systemically? So tell Me what you hope and what exactly is Lexi's law? What will change from this?
• 4:57
  Brie Abate: Yeah, for Lexi Law, we're pushing for legislation to know have zero age gap. When they're 18, if there are servers that are needed, they should be allowed. They shouldn't have to wait because a disability doesn't wait till 22. And with Lexi, she's not just intellectually delayed, she's also has a mental illness. She has schizophrenia which did not start until almost 20 years old. And that's usually when it does start in adults and there is still no services. They were telling me to take her to a mental hospital hospital with an IQ of 54 or wait till she's 22. I'm like, okay, how is that even an option? It doesn't even.
• 5:36
  Sarah Kernion: That's something that I love to. I'm. I'm so glad you shared that because it's that, that like complexity. Isn't it funny that Lexi is in the word complexity?
• 5:46
  Brie Abate: I love that. Right?
• 5:48
  Sarah Kernion: Yeah, but it's about right. Like, but exactly. It makes sense. I just, we don't do enough sitting in how deeply specific and nuanced and comple. These cases are of children like ours. And I think people think that it's. Oh, it's just a one off. No, there are thousands and thousands of kids like ours and like you said, some of these things that are co occurring or comorbidities, they don't even happen until they're even off the cliff. Right. So factoring that in alongside of it is how do you even, how do you even share that with people that are outside? And I, so I'm really glad that this is not only a law that you're putting and getting behind, but you know, creating a community of people that can support you in this. Because it's not just one. Why, why was it important to you, you know, to build this advocacy network around the law into something larger than just your families?
• 6:44
  Brie Abate: So yeah, it started as just pushing legislation and the community to see what we need to have change. And then I started talking to parents and now I'm getting hundreds of calls from parents and emails and saying, oh my God, how are you doing this? How did you reach out? Because again, there's no map. Who do you contact? Who do you. And I just did research and I just kept looking and emailing and then talking to people. So it's because of the parents. And I'm seeing that there is a need for an advocacy in what's going on right now. And we need to rally together as a tribe and get do this the right way. And I want to help as many parents as I can because I saw how frustrating it was for me for almost three years of getting door slams in our faces and the answer no multiple times with a kid screaming, begging for help. And now parents are like, no, I'm going through that. How did you do that? Can you help me? And not every parent is like computer savvy or knows who to call. And because I've already done this, I'm already at the end of the steps now. I want to help a community that desperately needs it.
• 7:53
  Sarah Kernion: Yeah, you know, I, the. There's this like really razor thin line that I, I experienced with my. And my children aren't are, you know, minors. Right. They're young, they're 11 and 8. But they're this advocacy some. I know it requires us to tell these like, really incredibly difficult stories publicly. And I know, I think about it a lot how, how typical community members have a really hard time metabolizing the lives that we live. Right. And you know, how, how have you balanced being able to like, share about Lexi's law and what you're doing and also just protect Lexi too, because she is an adult. Because it's something that I know, I think of now as, you know, in the, in the half decade down the road. And I know everyone that's listening that has kids around my age, we think about that. So what's your, what's your sort of, I don't know, wisdom for us as we navigate that down the road?
• 8:49
  Brie Abate: The only wisdom I have is be honest. And even if it sounds like you get a look on someone's face like, oh my God, that happened, they need to know because if they think that they're okay and you know, they just drooled and oh, they don't want to look, have eye contact or they don't want to eat certain foods. They don't think of it as a big deal. If you tell the truth of what's really happening in these households, people are like, oh my God, they do need help. They didn't. They do need more services. If you just sugarcoat it, you're not going to get the services you need. It's just being honest a hundred percent.
• 9:24
  Sarah Kernion: Yeah, it's true. And it, it does. I'm so glad you're talking about this because it does hit this point where people just can't believe that you're. That, that this is a reality that so many of us live. And I, and I always say why would I share? There's no reason for me to share something this difficult. If it wasn't my truth and the truth of my family, like, in a million years, why would I do that? And I think that the so many of these questions we have to confront are, I share this because the more in which the truth is revealed over and over and over again to people that are outside of it, the more support there is when, God forbid, I'm not here and changing the system, just eating an elephant one bite at a time. Right, Right. What do you. This is one of the questions I sent you earlier, but what do you really hope that Lexi's Law ultimately accomplishes down the road is like, what do you hope another mother doesn't have to experience, maybe like your family did?
• 10:19
  Brie Abate: Yeah. My number one goal at this point is to make sure Lexi Law passes through legislation so there's no age gap, so parents are not scrambling from 18 to 22 to find care, doctors, services. That's my number one goal. And to have a platform that. Where parents are like, I can go to this website, do this, and there's like a bullet pool of where they can pick and what they need to do and all the services, because right now you have to search high and low just to find one of the services. So that's my. My. My goal is to have it passed.
• 10:56
  Sarah Kernion: Now, right now, is this at a local level? And if you could. Could you share more details about those that are able to vote in favor of Lexi's Law? Where you are, where is. Where does it sit? Right now in the policy sector, there
• 11:08
  Brie Abate: is a draft bill that has already been written up. I'm working with Representative Tom Delnicki, Senator Saad Anwar, and hopefully a new representative, but I'm not supposed to say her name because hopefully she gets in and they're going to push it for the long term. So it's called the long office. There's short term and long. Long term. It's going to be in January, so we're going to send the bill in January, and hopefully it gets picked up. If it doesn't, then I will be making a lot more calls and a lot more packets will be sent, and we will be continuing to bang and we keep moving. Yeah, no, I will keep banging down the doors until they listen 100%.
• 11:46
  Sarah Kernion: It's. It's something that is so primal within women and mothers in this population. Right. We. I never in a million years thought I could understand the power that I held through my action and voice in this space. And I never would have chosen it. I'm sure you feel the same. There's no way. This isn't like something you go down and you go, you know what? Sign me up. Signs up for this life, right?
• 12:06
  Brie Abate: Never in a million years would I even think that I would be doing this right now. Because I've always been Lexi's advocate. Always. But I've never had to do this much to this level. It's just not even my personality. But it has brought me to my personality that I'm going to push. And yes. Yeah, it's. I'm more of a. I don't really like speaking to people. Go ahead. I'm sorry.
• 12:30
  Sarah Kernion: Yeah, it ends up being one of the coolest things. No, it ends up becoming one of the coolest things about advocacy. And again, it's not because it's a chosen ring to get in. It's because you do sometimes realize your strength as a mother and as a woman and as a middle aged woman who has experienced enough in life to know, wow, I. I actually underestimated my capacity for change and for. And for service to others, which is, is so big for me. Bri, I just, I really thank you. This is what a, what a powerful conversation. Because, you know, I said to you, I don't like making these super long. And I think this, this one packed a punch because I, I think that so many moms need to hear this Fast and Furious and then take it, not only feel supported, but also to share with others. So thank you for this conversation. I know, you know, you built these systems around Lexi, around her. And I just keep thinking about the difference between a safe life and what is a good life. And our children need certain things. They need safety and they need services and they need deep continuity of care. And they also deserve lives with belonging and relationships. And parents shouldn't have to be like the experts and the only one just to make that all possible. And so thank you for doing all this work in Lexi's name and for joining me here today on Inchstones Exactly. Well, we'll be listing every one of the resources and where you can support Lexi's law going forward as we continue to march for change. So, Bri, thank you again. And until next time, here on the Inchstones podcast,