Shannon Urquiola [00:00:03]: There's so many of our adults with challenges. You know, they have difficulty fitting into the work place due to social interaction challenges, sensory sensitivities. Right? Their repetitive behaviors, A lot of times, they struggle because of background noises or things that are overwhelming for them, so it's difficult for them to be able to hold a full time job, maybe even with supported employment.

Penny Williams [00:00:30]: Welcome to the Beautifully Complex podcast where I share insights and strategies on parenting neurodivergent kids straight from the trenches. I'm your host, Penny Williams. I'm a parenting coach, author, and mindset mama honored to guide you on the journey of raising your atypical kid. Let's get started. Welcome back, friends, to Beautifully Complex. I am really excited to be having this conversation today with Shannon Urquiola, and we are gonna talk about transitioning to adulthood for kids on the spectrum, neurodivergent kids, what that entails, what we need to know before we get to the point where our kid turns 18 and everything changes, and then what resources are really available to help with that transition and with support as our neurodivergent kids become adults. Thank you so much for being here, Shannon. Will you start by letting everyone know who you are and what you do?

Shannon Urquiola [00:01:35]: Absolutely. Thank you so much for having me here. I'm excited to be on the podcast. My name is Shannon Urquiola, and I am the founder of the nonprofit organization, Not Your Average Autism Mom. And we help moms raising autistic children navigate an overwhelmed so that they can stop wishing and hoping and dreaming for a different life. And, you know, I have a a weekly podcast that you can find on all your favorite podcast platforms and Amazon Music and Iheartradio. There's a new episode every Thursday. And I also have a we do a Let's Talk Autism monthly newsletter, and we also have a private membership exclusively for moms where we support them through coaching and resources and trainings.

Penny Williams [00:02:33]: Sounds wonderful. Sounds like a lot of resources I wish were available when my kid was younger.

Shannon Urquiola [00:02:38]: That's why I did it, because I these are all the things that I wished I would have had when I was raising my son, Jordan, who is now 28.

Penny Williams [00:02:47]: Wow. Yeah. Ditto. It's amazing where life takes us, right, based on the kids that we have and the needs that we have. Where do you want to start this conversation? I think maybe the first thing is just to say, what changes when our kid turns 18, and how do we prepare for that first step?

Shannon Urquiola [00:03:07]: So when your child turns 18, you no longer have legal authority to make decisions for them unless you have guardianship, and that includes decisions about education, medical care, finances, and a lot of other legal things. And I think that a lot of parents don't understand that or don't have that knowledge because when our child is in if they're in the public school system, they can stay until their 22nd birthday. So I think a lot of times, families automatically think that if they're still gonna be in school, that they're gonna still have authority to make decisions, and that is not the case. Guardianship is a legal process to protect individuals unable to care for their well-being due to a disability. And, you know, there are different kinds of guardianship. There's actually full guardianship, which gives you complete decision making authority over them and their financial decisions. There's also limited guardianship, which is restricted to certain areas. Right? So it allows them and they're they become known as the ward.

Shannon Urquiola [00:04:28]: It allows them to retain some decision making power if they have that ability.

Penny Williams [00:04:34]: Okay. And where does someone get started with that? Where does a parent go?

Shannon Urquiola [00:04:40]: Sure. So I think it's important to ideally, you wanna start probably, you know, when they're a little over 17 because you really have to gather documents from health care providers, therapists, IEPs through the years. You wanna have those. And then what you're gonna do is everything is filed through your probate office, your local probate office. And they will appoint a guardian ad litem for your child because they have to have legal representation to ideally identify that, yes, this person is going to fit a need. And it's important to understand that every child is unique. So there's no one size fits all answer. So I think probably one of the first things you probably wanna do is talk to your child's team, whether that's the medical team, educational team, and get their feedback to make sure that you're all on the same page.

Shannon Urquiola [00:05:39]: So, like, for example, so my son, Jordan, I have full guardianship over him, and I did guardianship originally in the state of Florida, and then we moved to the state of Georgia. Well, guardianship was not transferable, so I had to do it all over again in the state of Georgia. So just know that there are some states that will accept other states' guardianships, but not all of them. And k. I I think it's important to, Penny, for parents to understand that it's an emotional process for them. Mhmm. And I often say, listen. When you have to make the decision that your child is incapable of taking care of themselves, it's a very hard pill to swallow.

Penny Williams [00:06:27]: Yeah.

Shannon Urquiola [00:06:27]: Because, you know, it involves accepting that they're not capable of full independence.

Penny Williams [00:06:34]: Mhmm. What if I'm just thinking about different scenarios and thinking that maybe there might be some kids who aren't yet able to take care of themselves, but might be down the road much later than age 18, would we get a guardianship or a limited guardianship for some period of time? Is that a possibility as well?

Shannon Urquiola [00:06:57]: Well, it's not. Okay. But it can be reversed. Okay. So if there comes a point where you then feel like they are able to handle some things, it would mean opening up the process again.

Penny Williams [00:07:10]: Okay.

Shannon Urquiola [00:07:11]: So guardian of the person is basically responsible for day to day care, including food and clothing and medical needs and basically protecting them from harm of the outside world. And then guardian of the state, which is conservatorship usually, manages financial matters.

Penny Williams [00:07:32]: Okay.

Shannon Urquiola [00:07:32]: Applies for benefits, handles all of their assets. So maybe you have a child that can work in a limited capacity, but they're not able to balance their budget. They're not able to, you know, take care of those things. I know several parents who have that for their children.

Penny Williams [00:07:51]: So they just have the financial guardianship, you're saying?

Shannon Urquiola [00:07:54]: Correct.

Penny Williams [00:07:54]: Yeah. Yeah.

Shannon Urquiola [00:07:55]: But I think, you know, for me, one of the biggest things was education because he was gonna stay until he was 22. And then the other part for me was, you know, his medical. Because at any point, if you have a child that is taking medications and they turn 18, they can decide not to take them.

Penny Williams [00:08:16]: Mhmm.

Shannon Urquiola [00:08:17]: And you have no control over that.

Penny Williams [00:08:19]: Yep.

Shannon Urquiola [00:08:19]: And I think that that is probably, as parents, one of our biggest concerns. Now when you get guardianship, it affects things like boating and driving and signing legal contracts. Because a lot of families, I think, worry about their child being coerced in a negative way. So they can't get married, they cannot vote, they cannot sign, they can't go get a car because, you know, there have been individuals who have been taken for granted and have done these things because they've been influenced by somebody in a negative manner.

Penny Williams [00:08:59]: Mhmm. Yeah. It's a scary world out there.

Shannon Urquiola [00:09:02]: Yes. It is. And I I think that's a big concern. And basically, when you apply, you file a petition at your probate office, then they schedule a hearing. And like I said, a guardian ad litem attorney will be appointed to represent their needs. So for example, they came to my home, knocked on my door, came in. So I think it's important for a parent too, as much as your child, young adult, is capable of understanding, it's important to try to let them know what's going to happen so that they're not afraid when somebody comes to talk to them about what is going on.

Penny Williams [00:09:41]: Yeah. Yeah. Always prepare our kids for what's happening. Yes. For sure.

Shannon Urquiola [00:09:46]: And, you know, the court evaluates the need for guardianship based on the evidence that's collected and based on, you know, your testimony as well as, you know, others' testimony. And it's, as a parent, I understand. Like, it's hard for us to understand how we have to go and file a petition to take care of our own child into adulthood. Mhmm. But that's just the way that it works. Yeah. And every year after you file and get guardianship, you have to file a report. So every year you file a guardianship report, just updating them on anything that's changed, any physician changes, any, you know, placement changes.

Shannon Urquiola [00:10:29]: Could, for example, Jordan goes to a day program. And so you have to keep them updated to make sure that you're still taking care of them.

Penny Williams [00:10:38]: Mhmm. Let's talk a little bit about SSI because I think there's a lot of confusion around that. There is. And it can be beneficial. So yeah. And I I honestly, I don't know much about it myself.

Shannon Urquiola [00:10:51]: Yeah. Yeah.

Penny Williams [00:10:51]: I haven't gone down that path myself, so I would just love to give everybody kind of a primer on SSI.

Shannon Urquiola [00:10:56]: Sure. The first thing I wanna say is that the Social Security Administration does recognize autism as a potentially disabling condition that will qualify for Social Security benefits. But here's what I will tell you, and I always tell parents this because Jordan did not receive Social Security until he reached the age of 18. And the reason why is because SSI for children under 18 is always based on the family's income.

Penny Williams [00:11:28]: Right.

Shannon Urquiola [00:11:28]: So that's really important to know. Just because your child has a diagnosis of autism does not mean that they automatically qualify for SSI, And it's a big process. There is a lot of paperwork required. So I always tell parents, the first thing you wanna do if you're considering applying for SSI benefits, you wanna go to your local Social Security office, and you want to find out what is the income cap so that you know before you file any paperwork whether or not you fall under that income cap that they have.

Penny Williams [00:12:06]: Yeah.

Shannon Urquiola [00:12:07]: You know? And and I think so many parents don't understand that. You know? They think that they have other children that are in the same class as their child that their parents are getting SSI. So it's open to individuals with disabilities of any age regardless of work history. But under 18, it's a need based program requiring limited income and financial resources.

Penny Williams [00:12:34]: Okay. And then over 18, does that change?

Shannon Urquiola [00:12:37]: Over 18, that changes. And let me just I'll just highlight this really quick. So there's SSI, which is supplemental security income, and then there's SSDI, which is Social Security disability insurance. Most of our children and young adults and adults fall under the SSI category because the SSDI is available to adult disabled workers who basically have met a medical and technical eligibility. So our children and young adults usually haven't worked long enough to qualify for SSDI.

Penny Williams [00:13:16]: Gotcha.

Shannon Urquiola [00:13:16]: That's the difference. So once they turn 18, the parents' family income does not count any longer. Mhmm. So once they turn 18, they usually automatically qualify if they're not working or if they're in a limited job capacity. You know? And and the thing is what they look for is so the criteria for our children is marked, like, thinking and communication difficulties, severe impairment in age appropriate functioning. So how are they functioning the same age. And the other thing is personal functioning and maybe difficulty with concentration. Children 1 to 3 have to have one of those signs.

Penny Williams [00:14:05]: Okay.

Shannon Urquiola [00:14:06]: But then once they reach 3, from 3 to 18, they have to have 2 of them.

Penny Williams [00:14:10]: Okay.

Shannon Urquiola [00:14:11]: They have to show 2 of them. And then as an adult, they have to show 2 in limitations in daily living activities, social interaction difficulties, trouble with concentration, task completion. They have to show 2 of those.

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Penny Williams [00:17:02]: Aqua true comes with a 30 day money back guarantee and even makes a great gift. Today, my listeners receive 20% off any Aqua true purifier. Just go to aquatru.com. That's aquatru.com, and enter code complex at checkout. That's 20% off any AquaTru water purifier when you go to aquatru.com and use promo code complex, complex. I think maybe a misnomer about SSI is that you can or can't be employed and also receive SSI.

Shannon Urquiola [00:17:47]: Right.

Penny Williams [00:17:48]: There are times where you can be employed and still receive SSI. Correct? As an adult?

Shannon Urquiola [00:17:52]: You can because, you know, we always would like to see our young adults learn job skills. Right? That's why voc rehab is there because they help with placement and things like that. So, yes, they can work, but they have to get limited income to, again, qualify for that, and it's different in every state and sometimes counties. So that's why I tell people, like, check with your local office on what their financial caps are.

Penny Williams [00:18:21]: Okay. And is there any reason not to go down the path of SSI? You know, our parents get so hesitant about labels and all of these things, so I'm just thinking, are there some cons to this?

Shannon Urquiola [00:18:36]: You know, I've worked with 100 of families, and I have not really seen any downside to this. The only thing is, and I always tell families, listen. If you believe that your child is going to be capable of working. If you feel like they're going to have those life skills by the age of 22, then you may not want to apply for it if it's not necessary. But if you feel like it is going to be necessary and they're not gonna be able to hold a full time job and live independently, then these two things are very important.

Penny Williams [00:19:13]: Okay. And if that timetable extends, you know, if they're going to be able to take care of themselves, be self reliant, employed, and all that at 28, say, or 30, Is there a difference there? Would you still go down the path of SSI?

Shannon Urquiola [00:19:28]: Yeah. I would say apply for SSI now and utilize that availability of that income, because if they're not going to get be getting that full time income and living independently, then that is a benefit that they deserve. And so I would say apply for it, and then if it gets to the place where they are able to do it, once they've reached that income level, they will just take them off of SSI.

Penny Williams [00:19:52]: Gotcha. Gotcha. So check with your local office. That's the first step.

Shannon Urquiola [00:19:57]: Yes. It varies greatly based on, you know, if they're under 18, based on the family's financial situation. And, you know, the Social Security Administration uses a specific formula to determine the benefit amount considering the family's income, necessary deductions, say, Alabama. Yeah. Yeah. It's a very localized thing. Say, Alabama. Yeah.

Penny Williams [00:20:26]: Yeah. It's a very localized thing.

Shannon Urquiola [00:20:28]: There's so many of our adults with challenges. You know, they have difficulty fitting into the workplace due to social interaction challenges, sensory sensitivities. Right? They're repetitive behaviors. The other thing is a lot of times they struggle because of background noises or things that are overwhelming for them, so it's difficult for them to be able to hold a full time job, maybe even with supported employment.

Penny Williams [00:20:55]: Mhmm. You mentioned vocational rehab a few minutes ago, and I want to talk a little bit about that. It was actually mentioned to me only a couple weeks ago, and I was like, oh, I didn't even know that that existed. Right? And so I would love to hear more about it.

Shannon Urquiola [00:21:12]: You know, the thing is is we don't know what we don't know.

Penny Williams [00:21:15]: Mhmm.

Shannon Urquiola [00:21:15]: And, you know, I was telling you earlier before we started recording, I've worked with so many families that they don't realize that once their child turns 18, they no longer have, you know, authority over them. So what I always like to say is start these processes as soon as possible. If your child has an IEP in the public school system, when they turn 14, you should start having voc rehab be invited to their IEP meetings. Wow. Because the local voc rehab office and that representative knows what's available in your local area for them because they wanna help get them placed for a job. That's what their job is. Their job is to start working towards what's the next step after they age out.

Penny Williams [00:22:06]: Mhmm. Wow. Yeah. I was never offered that resource. Yeah.

Shannon Urquiola [00:22:11]: And you know what? And I always say, look. I don't think the schools in the school districts are malicious. I don't think that they're, you know, not telling us things on purpose. A lot of times, it's they don't even know. And that's why.

Penny Williams [00:22:26]: Yeah.

Shannon Urquiola [00:22:26]: You know, a big part of what we do is we help parents understand what is and isn't available to them in the educational setting, what they can expect and not expect because the school just isn't always forthcoming about those kind of things.

Penny Williams [00:22:44]: Right. Yeah. And I think, you know, the I hate all of this terminology. The higher functioning or the, you know, lesser impaired whatever. I would just say level 1 autism. Yeah.

Shannon Urquiola [00:22:57]: Well, it is funny because when my son was diagnosed, there were no levels. Mhmm. And, you know, the levels were initially introduced for the support people to understand what level of support they're going to need. Right. And I it's funny. I just my podcast episode last week was on high functioning and low functioning labels. Labels.

Penny Williams [00:23:19]: Mhmm.

Shannon Urquiola [00:23:19]: Because there is a lot of misconceptions out there about that.

Penny Williams [00:23:22]: Yeah.

Shannon Urquiola [00:23:23]: High functioning doesn't always mean that they're able to live independently and able to take care of themselves. So it's a messy place in the middle, but I think, yes, in what you're saying is that when we think that the child is higher functioning, let's just say, we don't think about those things as much.

Penny Williams [00:23:44]: Yeah. I think they fall through the cracks. You know, my own kid is highly intelligent, highly verbally fluent, and so most educators labeled him as unmotivated or lazy Sure. And felt like he was capable if he wanted to. Right? And so a lot of those extra services were just never mentioned or brought up, you know, because they felt like he was capable or he would be soon. Right? And so, yeah, I mean, I I had to learn about that from my own therapist of all people that there is vocational rehab. I was like, really?

Shannon Urquiola [00:24:20]: And I think, you know, autism is often a hidden disability.

Penny Williams [00:24:24]: Mhmm.

Shannon Urquiola [00:24:24]: So it makes it challenging to prove its impact on workability a lot of times. Yeah. So that's why it's so important that, you know, you have detailed medical documentation. And here's what I always say. Listen. The present level of performance and the parents' input on an IEP Mhmm. Is always important. Like, always make sure that those things are descriptive, that they really show what their challenges are as well as their strengths.

Shannon Urquiola [00:24:57]: Like, you wanna show both of those. Because when you get to this point, you have to have all of that paperwork, and that documentation is going to help you because a lot of applications are initially rejected. Mhmm. So you have to go back through and put in more documentation. Some people have to hire attorneys to get it done. And I told families a lot of times, like, if you're in the gray area, it might be best for you to hire an attorney if you're going to apply for Social Security because they know the little ins and outs of what to put where on the application and things like that.

Penny Williams [00:25:35]: Yeah.

Shannon Urquiola [00:25:36]: Somebody like me, I had all the documentation. You know, he'd had deficits for since the beginning, so it wasn't necessary for me to hire an attorney to go through the process. It was just a lot of work Right.

Shannon Urquiola [00:25:50]: It's a lot of work on the parents' part to get all of that information readily available for the application process, and that's why I say this starts when they're in 3rd grade.

Penny Williams [00:26:01]: Mhmm.

Shannon Urquiola [00:26:02]: Like, it literally starts that documentation is so very important along the journey.

Penny Williams [00:26:08]: Yeah. Yeah. For sure. And so vocational rehab is a government program. Correct? Mhmm. And so people can Google and look for their local vocational rehab and reach out to them and find out what sort of services they can get.

Shannon Urquiola [00:26:23]: Yes. And, also, I really recommend talking to your school team. If you're getting close to, you know, you're getting into the teenage years, you wanna talk to them and let them know that you wanna have voc rehab included because that's once they turn 14, you're starting with transition planning. And that's when voc rehab should be included so that you know what's available through them in this process.

Penny Williams [00:26:50]: Mhmm. Okay. The last thing I wanted to talk about real quick before we run out of time is being prepared for when we're gone, you know, which is a hard thing for parents to think about, but we are very likely that our kids are gonna outlive us. And if they still need help in day to day functioning or if they still need financial help, What can we set up?

Shannon Urquiola [00:27:16]: So here's what I'll tell you, and we have I have a financial planner that comes into our membership once a year because they're in the financial planning space. We can't record it and put it into our program, but he comes back every year to talk to our members because he talks about what all of the options are for setting up financial trust, for setting up a special needs trust, and those kind of things. And this is the other thing. Depending on where you are, depends on what's available for your child once they age out of the public school system. Mhmm. And some places, there isn't a day program available. You know? Yeah. I got extremely lucky because we moved to Georgia just at the right time is all I can say, and Jordan qualified for what's called here the med waiver or the waiver program.

Shannon Urquiola [00:28:07]: All states have something like that. So what I would also encourage parents to do now, I don't care if your child is 5 or 7 or 9, Find out about the waiver in your state. You may not need it. They may not need it, but a lot of states, that waiting list is 7 to 12 years.

Penny Williams [00:28:30]: Or more. Here in North Carolina, it's probably 20 at this point.

Shannon Urquiola [00:28:35]: Is it really?

Penny Williams [00:28:36]: Mhmm. Yeah. I mean, people don't even bother anymore because they know they're never gonna get there.

Shannon Urquiola [00:28:42]: Yeah. And, you know, I moved from the state of Florida. Another one, terrible. Terrible. Like, they just services once they become an adult. Like, he would have been home with me, just at home with me, or I would have had to pay for him to go somewhere.

Penny Williams [00:28:58]: Mhmm.

Shannon Urquiola [00:28:58]: That wouldn't be covered under any waiver program. Well, like I said, we were lucky. We got the waiver in the state of Georgia. So Jordan is actually on a waiver program where he will be taken care of from now into, like, elder care.

Penny Williams [00:29:15]: Oh, wow.

Shannon Urquiola [00:29:16]: Through the waiver program, which if you have a child with disabilities who has siblings, that is often a big relief to those siblings to know that that's not gonna be put on their shoulders. I have a daughter that's 2 years younger than Jordan, and that was something that was really important to me was I wanted to let her know that he will have services available well into his elder care. Wow. So always check with your state. And like I said, if your child is 5, you don't know what the future holds. No one knows what the future holds. I encourage all my parents to get on a list as early as you can.

Penny Williams [00:29:53]: Mhmm. Yeah.

Shannon Urquiola [00:29:55]: That's important. And, also, I just wanna say too, Penny, before we wrap up, the Social Security Administration has a child disability starter kit, which has detailed document request. So if you go to the Social Security Administration's website, you can download that disability starter kit to get all the detailed information.

Penny Williams [00:30:18]: We'll link that up for everyone in the show notes too.

Shannon Urquiola [00:30:20]: Yeah. That would be great.

Penny Williams [00:30:21]: Thank you for mentioning that. Well, thank you so much, Shannon. Yes. Absolutely. It's been a wealth of information. I know there's a lot more that people need to know and learn, but we can only take one step at a time, and I think this is a really good starter for everyone.

Shannon Urquiola [00:30:35]: I just wanna say before we wrap up because, you know, I always say that when you realize that you're gonna be a, you know, a forever parent, Like, you're always going to forever parent your child. It's a hard pill to swallow, but I always tell people, it's different, but it's not bad.

Penny Williams [00:30:51]: Yeah.

Shannon Urquiola [00:30:52]: It's not bad. I mean, I was talking to a friend of mine the other day, and I said, you know, it's funny because Jordan's 28 now. So I have this 28 year old man that I'm taking care of.

Penny Williams [00:31:02]: Mhmm.

Shannon Urquiola [00:31:02]: But I can't imagine my life any other way.

Penny Williams [00:31:05]: Yeah. It becomes your normal.

Shannon Urquiola [00:31:07]: Yes. Yeah. Exactly. Like, his sister took him out the other day, for an evening, and that was the first time, like, they had gone out for an evening, and so I'm only used to him not being here during the day program. And so when he wasn't here during those hours, I just caught myself thinking, this is so weird. Like, he's just part of who I am and what I do. So just know that it's a different life, but it's definitely not bad.

Penny Williams [00:31:31]: Yeah. Yeah. There's blessings and everything.

Shannon Urquiola [00:31:34]: Yes.

Penny Williams [00:31:35]: We just have to notice them. Right? We just have to be looking for them. Absolutely. Well, I wanna let everybody know how to connect with you further to maybe join your membership or listen to your podcast. You can find all of those links in our show notes for this episode, which are at parentingadhdandautism.com/278 for episode 278. Thank you so much for the work that you're doing, Shannon, in helping families like mine.

Shannon Urquiola [00:32:03]: Well, thank you so much for having me and and sharing this information, and I hope it's been helpful for a lot of parents.

Penny Williams [00:32:09]: Absolutely. And I will see everybody on the next episode. Take good care. Thanks for joining me on the Beautifully Complex podcast. If you enjoyed this episode, please subscribe and share, and don't forget to check out my online courses and parent coaching at parentingadhdandautism.com and at thebehaviorrevolution.com.