Latest / Beautifully Complex / 278: Helping Kids on the Spectrum Transition to Adulthood, with Shannon Urquiola

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278: Helping Kids on the Spectrum Transition to Adulthood, with Shannon Urquiola · Beautifully Complex

0:03
Speaker 1: There's so many of our adults with challenges. You know,
0:07
Speaker 1: they have difficulty fitting into the workplace due to social
0:11
Speaker 1: interaction challenges, sensory sensitivities, right, they're repetitive behaviors. A lot
0:17
Speaker 1: of times they struggle because of background noises or things
0:21
Speaker 1: that are overwhelming for them. So it's difficult for them
0:24
Speaker 1: to be able to hold a full time job, maybe
0:26
Speaker 1: even with supported employment.
0:31
Speaker 2: Welcome to the Beautifully Complex podcast, where I share insights
0:34
Speaker 2: and strategies on parenting neurodiversent kids straight from the trenches.
0:39
Speaker 2: I'm your host, Penny Williams. I'm a parenting coach, author,
0:43
Speaker 2: and mindset mama, honored to guide you on the journey
0:46
Speaker 2: of raising your atypical kid. Let's get started. Welcome back,
0:54
Speaker 2: friends to Beautifully Complex. I am really excited to be
0:58
Speaker 2: having this conversation today with Shannon Erciola, and we are
1:03
Speaker 2: going to talk about transitioning to adulthood for kids on
1:08
Speaker 2: the spectrum neurodivergent kids, what that entails, what we need
1:13
Speaker 2: to know before we get to the point where our
1:16
Speaker 2: kid turns eighteen and everything changes, and then what resources
1:20
Speaker 2: are really available to help with that transition and with
1:24
Speaker 2: support as our neurodivergent kids become adults. Thank you so
1:30
Speaker 2: much for being here, Shannon, when you start by letting
1:32
Speaker 2: everyone know who you are and what you do.
1:35
Speaker 1: Absolutely, thank you so much for having me here. I'm
1:38
Speaker 1: excited to be on the podcast. My name is Shannon Ercuola,
1:42
Speaker 1: and I am the founder of the nonprofit organization Not
1:45
Speaker 1: your Average Autism Mom, and we help moms raising autistic
1:50
Speaker 1: children navigate an unexpected parenting journey so that they can
1:55
Speaker 1: gain confidence and reduce their stress and really embrace life
2:00
Speaker 1: with less overwhelm, so that they can stop wishing.
2:04
Speaker 3: And hoping and dreaming for a different life.
2:07
Speaker 1: And you know, I have a weekly podcast that you
2:11
Speaker 1: can find on all your favorite podcast platforms and Amazon
2:14
Speaker 1: Music and iHeartRadio.
2:16
Speaker 3: There's a new episode every Thursday.
2:18
Speaker 1: And I also have a we do a Let's Talk
2:22
Speaker 1: Autism monthly newsletter. And we also have a private membership
2:27
Speaker 1: exclusively for moms where we support them through coaching and
2:31
Speaker 1: resources and trainings.
2:33
Speaker 2: Sounds wonderful, sounds like a lot of resources I wish
2:36
Speaker 2: were available when my kid was younger.
2:38
Speaker 1: That's why I did it, because these are all the
2:41
Speaker 1: things that I wished I would have had when I
2:44
Speaker 1: was raising my son Jordan, who is now twenty eight.
2:47
Speaker 2: Wow. Yeah, detto. It's amazing where life takes us right
2:51
Speaker 2: based on the kids that we have and the needs
2:53
Speaker 2: that we have. Where do you want to start this conversation?
2:57
Speaker 2: I think maybe the first thing is just to say
2:59
Speaker 2: what changes when our kid turns eighteen? Sure, and how
3:04
Speaker 2: do we prepare for that first step?
3:07
Speaker 1: So, when your child turns eighteen, you no longer have
3:11
Speaker 1: legal authority to make decisions for them unless you have guardianship,
3:17
Speaker 1: and that includes decisions about education, medical care finances, and
3:24
Speaker 1: a lot of other legal things. And I think that
3:28
Speaker 1: a lot of parents don't understand that or don't have
3:30
Speaker 1: that knowledge because when our child is in if they're
3:34
Speaker 1: in the public school system, they can stay until their
3:38
Speaker 1: twenty second birthday. So I think a lot of times
3:41
Speaker 1: families automatically think that if they're still going to be
3:44
Speaker 1: in school, that they're going to still have authority to
3:48
Speaker 1: make decisions, and that is not the case. Guardianship is
3:53
Speaker 1: a legal process to protect individuals unable to care for
3:59
Speaker 1: their well being due to a disability. And you know,
4:03
Speaker 1: there are different kinds of guardianship. There's actually full guardianship
4:08
Speaker 1: which gives you complete decision making authority over them and
4:14
Speaker 1: their financial decisions. There's also limited guardianship, which is restricted
4:21
Speaker 1: to certain areas, right, so it allows them and there
4:26
Speaker 1: they become known as the ward.
4:28
Speaker 3: It allows them.
4:29
Speaker 1: To retain some decision making power if they have that ability.
4:34
Speaker 2: Okay, and where does someone get started with that? Where
4:38
Speaker 2: does a parent go?
4:40
Speaker 3: Sure?
4:41
Speaker 1: So I think it's important to ideally you want to start,
4:45
Speaker 1: probably you know, when they're a little over seventeen, because
4:48
Speaker 1: you really have to gather documents from healthcare providers, therapists
4:53
Speaker 1: ips through the years. You want to have those, and
4:57
Speaker 1: then what you're going to do is everything is filed
4:59
Speaker 1: through you or probate office, your local probate office, and
5:04
Speaker 1: they will appoint a guardian ed item for your child
5:09
Speaker 1: because they have to have legal representation to ideally identify that, yes,
5:14
Speaker 1: this person is going to fit a need. And it's
5:19
Speaker 1: important to understand that every child is unique, so there's
5:22
Speaker 1: no one size fits all answer. So I think probably
5:26
Speaker 1: one of the first things you probably want to do
5:28
Speaker 1: is talk to your child's team, whether that's the medical team,
5:33
Speaker 1: educational team, and get their feedback to make sure that
5:37
Speaker 1: you're all on the same page. So like, for example,
5:41
Speaker 1: so my son Jordan, I have full guardianship over him,
5:45
Speaker 1: and I did guardianship originally in the state of Florida,
5:48
Speaker 1: and then we move to the state of Georgia. Well,
5:52
Speaker 1: guardianship was not transferable, so I had to do it
5:54
Speaker 1: all over again in this state of Georgia. So just
5:58
Speaker 1: know that there are some states that will accept other
6:03
Speaker 1: states guardianships, but not all of them. And I think
6:07
Speaker 1: it's important to penny for parents to understand that it's
6:12
Speaker 1: an emotional process for them. And I often say, listen,
6:17
Speaker 1: when you have to make the decision that your child
6:21
Speaker 1: is incapable of taking care of themselves, it's a very
6:25
Speaker 1: hard pill to swallow, Yeah, because you know it involves
6:29
Speaker 1: accepting that they're not capable of full independence.
6:35
Speaker 2: What if I'm just thinking about different scenarios and thinking
6:40
Speaker 2: that maybe there might be some kids who aren't yet
6:44
Speaker 2: able to take care of themselves but might be down
6:46
Speaker 2: the road much later than age eighteen, would we get
6:51
Speaker 2: a guardianship or a limited guardianship for some period of time.
6:55
Speaker 2: Is that a possibility as well?
6:57
Speaker 3: Well, it's not okay, be reversed.
7:01
Speaker 1: So if there comes a point where you then feel
7:05
Speaker 1: like they are able to handle some things, it would
7:08
Speaker 1: be opening up the process again. So guardian of the
7:12
Speaker 1: person is basically responsible for day to day care including
7:17
Speaker 1: food and clothing and medical needs and basically protecting them
7:22
Speaker 1: from harm of the outside world. And then guardian of
7:26
Speaker 1: the state, which is conservatorship, usually manages financial matters, applies
7:33
Speaker 1: for benefits, handles all of their assets. So maybe you
7:37
Speaker 1: have a child that can work in a limited capacity,
7:42
Speaker 1: but they're not able to balance their budget, they're not
7:45
Speaker 1: able to take care of those things.
7:48
Speaker 3: I know several parents who have that for their.
7:50
Speaker 2: Children, so they just have the financial guardianship you're saying, correct, Yeah, yeah.
7:55
Speaker 1: But I think you know, for me, one of the
7:57
Speaker 1: biggest things was education because he was going to stay
8:01
Speaker 1: until he was twenty two. And then the other part
8:05
Speaker 1: for me was, you know, his medical because at any point,
8:09
Speaker 1: if you have a child that is taking medications and
8:13
Speaker 1: they turn eighteen, they can decide not to take them
8:17
Speaker 1: and you have no control over that. And I think
8:20
Speaker 1: that that is probably as parents, one of our biggest concerns.
8:25
Speaker 1: Now when you get guardianship, it affects things like voting
8:31
Speaker 1: and driving.
8:32
Speaker 3: And signing legal contracts.
8:34
Speaker 1: Because a lot of families, I think, worry about their
8:37
Speaker 1: child being coerced in a negative way. So they can't
8:42
Speaker 1: get married, they cannot vote, they cannot sign, they can't
8:47
Speaker 1: go get a car because you know, there have been
8:50
Speaker 1: individuals who have been taken for granted and have done
8:54
Speaker 1: these things because they've been influenced by somebody in a
8:58
Speaker 1: negative manner.
9:00
Speaker 2: Yeah, it's a scary world out there.
9:02
Speaker 1: Yes it is, and I think that's a big concern.
9:05
Speaker 1: And basically, when you apply, you file a petition at
9:10
Speaker 1: your probate office. Then they schedule a hearing and like
9:14
Speaker 1: I said, a guardian at LTEM attorney will be appointed
9:17
Speaker 1: to represent their needs. So, for example, they came to
9:21
Speaker 1: my home, knocked on my door, came in.
9:24
Speaker 3: So I think it's important for a parent too.
9:26
Speaker 1: As much as your child young adult is capable of understanding,
9:32
Speaker 1: it's important to try to let them know what's going
9:34
Speaker 1: to happen so that they're not afraid when somebody comes
9:38
Speaker 1: to talk to them about what is going on.
9:41
Speaker 2: Yeah, yeah, I always prepare our kids for what's happening, Yes,
9:45
Speaker 2: for sure.
9:46
Speaker 1: And you know, the court evaluates the need for guardianship
9:50
Speaker 1: based on the evidence that's collected and based on you know,
9:54
Speaker 1: your testimony as well as you know others testimony. And
9:58
Speaker 1: it's as a parent, I stand like it's hard for
10:01
Speaker 1: us to understand how we have to go and file
10:04
Speaker 1: a petition to take care of our own child into adulthood.
10:09
Speaker 3: But that's just the way that it works.
10:12
Speaker 1: Yeah, And every year after you file and get guardianship,
10:17
Speaker 1: you have to file a report. So every year you
10:20
Speaker 1: file a guardianship report, just updating them on anything that's changed,
10:25
Speaker 1: any physician changes, any you know, placement changes, could for example,
10:30
Speaker 1: Jordan goes to a day program, and so you have
10:34
Speaker 1: to keep them updated to make sure that you're still
10:37
Speaker 1: taking care of them.
10:39
Speaker 2: Let's talk a little bit about SSI, because I think
10:42
Speaker 2: there's a lot of confusion around that there is and
10:44
Speaker 2: it can be beneficial. So yeah, and I honestly I
10:49
Speaker 2: don't know much about it myself. Yeah, yeah, I haven't
10:52
Speaker 2: gone down that path myself. So I would just love
10:54
Speaker 2: to give everybody kind of a primer on SSI.
10:56
Speaker 3: Sure.
10:57
Speaker 1: The first thing I want to say is that the
10:59
Speaker 1: Social Security Administration does recognize autism as a potentially disabling
11:05
Speaker 1: condition that will qualify for Social Security benefits.
11:09
Speaker 3: But here's what I will tell you.
11:11
Speaker 1: And I always tell parents this because Jordan did not
11:15
Speaker 1: receive Social Security until.
11:17
Speaker 3: He reached the age of eighteen.
11:19
Speaker 1: And the reason why is because SSI for children under
11:24
Speaker 1: eighteen is always based on the family's income, right, So
11:29
Speaker 1: that's really important to know. Just because your child has
11:33
Speaker 1: a diagnosis of autism does not mean that they automatically
11:37
Speaker 1: qualify for SSI.
11:39
Speaker 3: And it's a big process.
11:41
Speaker 1: There is a lot of paperwork required, So I always
11:45
Speaker 1: tell parents the first thing you want to do if
11:47
Speaker 1: you're considering applying for SSI benefits, you want to go
11:51
Speaker 1: to your local Social Security office and you want to
11:55
Speaker 1: find out what is the income cap, so that you
11:59
Speaker 1: know before you file any paperwork whether or not you
12:03
Speaker 1: fall under that income cap that they have. Yeah, you know,
12:08
Speaker 1: and I think so many parents don't understand that, you know,
12:11
Speaker 1: they think that they have other children that are in
12:14
Speaker 1: the same class as their child that their parents are
12:17
Speaker 1: getting SSI. So it's open to individuals with disabilities of
12:22
Speaker 1: any age, regardless of work history. But under eighteen, it's
12:28
Speaker 1: a need based program requiring limited income and financial resources.
12:34
Speaker 2: Okay, and then over eighteen does that change?
12:37
Speaker 1: Over eighteen, that changes and let me just I'll just
12:40
Speaker 1: highlight this really quick. So there's SSI, which is Supplemental
12:45
Speaker 1: Security Income, and then there's SSDI, which is Social Security
12:51
Speaker 1: Disability Insurance. Most of our children and young adults and
12:54
Speaker 1: adults fall under the SSI category because the SSDI is
13:00
Speaker 1: available to adult disabled workers who basically have met a
13:06
Speaker 1: medical and technical eligibility. So our children and young adults
13:12
Speaker 1: usually haven't worked long enough to qualify for SSDI.
13:16
Speaker 3: Gotcha, that's the difference.
13:18
Speaker 1: So once they turn eighteen, the parents' family income does
13:23
Speaker 1: not count any longer. So once they turn eighteen, they
13:27
Speaker 1: usually automatically qualify if they're not working or if they're
13:31
Speaker 1: in a limited job capacity, you know. And the thing
13:35
Speaker 1: is what they look for is so the criteria for
13:38
Speaker 1: our children is marked like thinking and communication difficulties, severe
13:45
Speaker 1: impairment in age, appropriate functioning, so how are they functioning
13:50
Speaker 1: compared to their peers of the same age, And the
13:55
Speaker 1: other thing is personal functioning and maybe difficulty with concentration.
14:01
Speaker 1: Children one to three have to have one of those signs, okay,
14:06
Speaker 1: but then once they reach three, from three to eighteen,
14:09
Speaker 1: they have to have.
14:09
Speaker 3: Two of them.
14:11
Speaker 1: Okay, they have to show two of them, and then
14:13
Speaker 1: as an adult, they have to show two in limitations
14:17
Speaker 1: in daily living activities, social interaction difficulties, trouble with concentration,
14:25
Speaker 1: task completion, they have to show two of those.
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Speaker 2: co O m P L e X. I think maybe
17:39
Speaker 2: a misnomer about s SI is that you can or
17:44
Speaker 2: can't be employed and also receive SSI. Right, there are
17:48
Speaker 2: times where you can be employed and still receive SSI. Correct,
17:52
Speaker 2: as an adult.
17:52
Speaker 1: You can because you know, we always would like to
17:56
Speaker 1: see our young adults learn job skills.
17:59
Speaker 3: Right.
18:00
Speaker 1: That's why Folk Rehab is there because they help with
18:02
Speaker 1: placement and things like that. So, yes, they can work,
18:06
Speaker 1: but they have to get limited income to again qualify
18:10
Speaker 1: for that, and it's different in every state and sometimes counties.
18:15
Speaker 1: So that's why I tell people like, check with your
18:17
Speaker 1: local office on what their financial caps are.
18:21
Speaker 2: Okay, and is there any reason not to go down
18:26
Speaker 2: the path of SSI. You know, our parents get so
18:29
Speaker 2: hesitant about labels and all of these things. So I'm
18:32
Speaker 2: just thinking, are there some cons to this?
18:36
Speaker 1: You know, I've worked with hundreds of families and I
18:39
Speaker 1: have not really seen any downside to this. The only
18:42
Speaker 1: thing is, and I always tell families, listen, if you
18:45
Speaker 1: believe that your child is going to be capable of working,
18:51
Speaker 1: if you feel like they're going to have those life
18:55
Speaker 1: skills by the age of twenty two, then you may
18:58
Speaker 1: not want to apply for it if it's not necessary.
19:02
Speaker 1: But if you feel like it is going to be
19:05
Speaker 1: necessary and they're not going to be able to hold
19:07
Speaker 1: a full time job.
19:08
Speaker 3: And live independently, then these two things are very.
19:12
Speaker 2: Important, Okay. And if that timetable extends, you know, if
19:17
Speaker 2: they're going to be able to take care of themselves,
19:20
Speaker 2: be self reliant and employed and all of that at
19:22
Speaker 2: twenty eight, say or thirty, is there a difference there?
19:26
Speaker 2: Would you still go down the path of SSI.
19:29
Speaker 1: Yeah, I would say apply for SSI now and utilize
19:32
Speaker 1: that availability of that income, because if they're not going
19:35
Speaker 1: to be getting that full time income and living independently,
19:39
Speaker 1: then that is a benefit that they deserve, and so
19:42
Speaker 1: I would say, apply for it, and then if it
19:45
Speaker 1: gets to the place where they are able to do it,
19:47
Speaker 1: once they've reached that income level, they will just take
19:51
Speaker 1: them off of SSI.
19:52
Speaker 2: Gotcha, gotcha. So check with your local office. That's the
19:56
Speaker 2: first step.
19:57
Speaker 1: Yes, it varies greatly based on you know, if they're
20:01
Speaker 1: under eighteen, based on the famili's financial situation, and you know,
20:06
Speaker 1: the Social Security Administration uses a specific formula to determine
20:10
Speaker 1: the benefit amount, considering the family's income, necessary deductions, and
20:16
Speaker 1: again location, because there are you know, families in New
20:20
Speaker 1: York that get considerably amount more than families in let's
20:24
Speaker 1: say Alabama.
20:26
Speaker 2: Yeah. Yeah, it's a very localized thing.
20:29
Speaker 1: There's so many of our adults with challenges. You know,
20:32
Speaker 1: they have difficulty fitting into the workplace due to social
20:36
Speaker 1: interaction challenges, sensory sensitivities, right, they're repetitive behaviors. The other
20:43
Speaker 1: thing is a lot of times they struggle because of
20:45
Speaker 1: background noises or things that are overwhelming for them. So
20:49
Speaker 1: it's difficult for them to be able to hold a
20:52
Speaker 1: full time job, maybe even with supported employment.
20:57
Speaker 2: You mentioned vocational rehab a few minutes ago, and I
21:00
Speaker 2: want to talk a little bit about that. It was
21:02
Speaker 2: actually mentioned to me only a couple of weeks ago,
21:05
Speaker 2: and I was like, oh, I didn't even know that
21:07
Speaker 2: that one existed, right, And so I would love to
21:11
Speaker 2: hear more about it.
21:12
Speaker 3: You know.
21:12
Speaker 1: The thing is is we don't know what we don't know.
21:15
Speaker 1: And you know I was telling you earlier before we
21:17
Speaker 1: started recording. I've worked with so many families that they
21:21
Speaker 1: don't realize that once their child turns eighteen, they no
21:25
Speaker 1: longer have you know, authority over them. So what I
21:28
Speaker 1: always like to say is start these processes as soon
21:32
Speaker 1: as possible. If your child has an IEP in the
21:35
Speaker 1: public school system, when they turn fourteen, you should start
21:39
Speaker 1: having VOKE Rehab be invited to their IEP meetings. Wow,
21:45
Speaker 1: because the local VOKE Rehab office and that representative knows
21:50
Speaker 1: what's available in your local area for them because they
21:55
Speaker 1: want to help get them placed for a job.
21:58
Speaker 3: That's what their job is.
22:00
Speaker 1: Job is to start working towards what's the next step
22:05
Speaker 1: after they age out.
22:07
Speaker 2: Wow. Yeah, I was never offered that resource.
22:10
Speaker 1: Yeah, And you know what, and I always say, look,
22:14
Speaker 1: I don't think the schools in the school districts are malicious.
22:18
Speaker 1: I don't think that they're you know, not telling us
22:21
Speaker 1: things on purpose. A lot of times it's they don't
22:24
Speaker 1: even know. And that's why, you know, a big part
22:27
Speaker 1: of what we do is we help parents understand what
22:32
Speaker 1: is and isn't available to them in the educational setting,
22:37
Speaker 1: what they can expect and not expect, because the school
22:40
Speaker 1: just isn't always forthcoming about those kind of things, right.
22:44
Speaker 2: Yeah, And I think, you know, the I hate all
22:48
Speaker 2: this terminology, the higher functioning or the you know, lesser
22:52
Speaker 2: impaired whatever. I would just say level one autision.
22:57
Speaker 3: Yeah.
22:57
Speaker 1: Well, and it's funny because when my son was diagnosed,
23:01
Speaker 1: there were no levels, and you know, the levels were
23:04
Speaker 1: initially introduced for the support people to understand what level
23:11
Speaker 1: of support they're going to need. And it's funny. I
23:14
Speaker 1: just my podcast episode last week was on high functioning
23:17
Speaker 1: and low functioning labels because there's a lot of misconceptions
23:21
Speaker 1: out there about that high functioning doesn't always mean that
23:27
Speaker 1: they're able to live independently and able to take care
23:30
Speaker 1: of themselves. So it's a messy place in the middle.
23:34
Speaker 1: But I think, yes, in what you're saying is that
23:37
Speaker 1: when we think that the child is higher functioning, let's
23:41
Speaker 1: just say we don't think about those things as much.
23:44
Speaker 2: Yeah, I think they fall through the cracks. You know,
23:46
Speaker 2: my own kid is highly intelligent, highly verbally fluent, and
23:52
Speaker 2: so most educators labeled him as unmotivated or lazy sure,
23:56
Speaker 2: and felt like he was capable if he wanted to write,
24:00
Speaker 2: and so a lot of those extra services were just
24:03
Speaker 2: never mentioned or brought up, you know, because they felt
24:08
Speaker 2: like he was capable or he would be soon, right,
24:11
Speaker 2: And so yeah, I mean I had to learn about
24:14
Speaker 2: that from my own therapist. Of a lot of people that
24:17
Speaker 2: there was vocational rehab, I was like, really.
24:20
Speaker 1: And I think you know, autism is often a hidden disability,
24:24
Speaker 1: so it makes it challenging to prove its impact on
24:29
Speaker 1: workability a lot of times. Yeah, so that's why it's
24:31
Speaker 1: so important that you know, you have detailed medical documentation.
24:36
Speaker 1: And here's what I always say, Listen, the present level
24:40
Speaker 1: of performance and the parent's input on an IEP is
24:45
Speaker 1: always important. Like always make sure that those things are descriptive,
24:51
Speaker 1: that they really show what their challenges are as well
24:56
Speaker 1: as their strengths, Like you want to show both of
24:58
Speaker 1: those because when you get to this point, you have
25:02
Speaker 1: to have all of that paperwork and that documentation is
25:06
Speaker 1: going to help you because a lot of applications are
25:09
Speaker 1: initially rejected, so you have to go back through and
25:13
Speaker 1: put in more documentation. Some people have to hire attorneys
25:17
Speaker 1: to get it done. And I tell families a lot
25:19
Speaker 1: of times, like if you're in the gray area, it
25:23
Speaker 1: might be best for you to hire an attorney if
25:25
Speaker 1: you're going to apply for soul security because they know
25:29
Speaker 1: the little ins and outs of what to put where
25:33
Speaker 1: on the application and things like that. Somebody like me,
25:37
Speaker 1: I had all the documentation, you know, he'd had deficits
25:41
Speaker 1: for since the beginning, so it wasn't necessary for me
25:45
Speaker 1: to hire an attorney to.
25:47
Speaker 3: Go through the process.
25:48
Speaker 1: It was just a lot of work on you know,
25:50
Speaker 1: it's a lot of work on the parents' part to
25:52
Speaker 1: get all of that information readily available for the application process.
25:57
Speaker 1: And that's why I say this art when they're in
26:00
Speaker 1: third grade, like it literally starts that documentation is so
26:06
Speaker 1: very important along the journey.
26:08
Speaker 2: Yeah, yeah, for sure. And so a vocational rehab is
26:11
Speaker 2: a government program, correct, And so people can google and
26:17
Speaker 2: look for their local vocational rehab and reach out to
26:20
Speaker 2: them and find out what sort of services they can
26:22
Speaker 2: get yes.
26:23
Speaker 1: And also I really recommend talking to your school team.
26:29
Speaker 1: If you're getting close to you know, you're getting into
26:31
Speaker 1: the teenage years, you want to talk to them and
26:34
Speaker 1: let them know that you want to have VOKE rehab
26:36
Speaker 1: included it because that's once they turn fourteen, you're starting
26:40
Speaker 1: with transition planning, and that's when VOKE rehab should be
26:44
Speaker 1: included so that you know what's available through them in
26:49
Speaker 1: this process.
26:51
Speaker 2: Okay, the last thing I wanted to talk about real
26:53
Speaker 2: quick before we run out of time is being prepared
26:57
Speaker 2: for when we're gone, you know, which is a hard
27:01
Speaker 2: thing for parents to think about, but we are very
27:04
Speaker 2: likely that our kids are going to outlive us. And
27:07
Speaker 2: if they still need help in day to day functioning,
27:11
Speaker 2: or if they still need financial help, what can we
27:14
Speaker 2: set up?
27:16
Speaker 1: So here's what I'll tell you, And we have I
27:19
Speaker 1: have a financial planner that comes into our membership once
27:21
Speaker 1: a year. Because they're in the financial planning space, we
27:24
Speaker 1: can't record it and put it into our program, but
27:27
Speaker 1: he comes back every year to talk to our members
27:29
Speaker 1: because he talks about what all of the options are
27:33
Speaker 1: for setting up financial trust, for setting up a special
27:37
Speaker 1: needs trust, and those kind of things. And this is
27:40
Speaker 1: the other thing. Depending on where you are, depends on
27:44
Speaker 1: what's available for your child once they age out of
27:48
Speaker 1: the public school system, and some places there isn't a
27:53
Speaker 1: day program available. You know, I got extremely lucky because
27:58
Speaker 1: we moved to Georgia just to the right time, is
28:00
Speaker 1: all I can say. And Jordan qualified for what's called
28:04
Speaker 1: here the med waiver, the waiver program. All states have
28:08
Speaker 1: something like that. So what I would also encourage parents
28:13
Speaker 1: to do now, I don't care if your child is
28:15
Speaker 1: five or seven or nine, find out about the waiver
28:20
Speaker 1: in your state. You may not need it, they may
28:23
Speaker 1: not need it. But a lot of states that waiting
28:27
Speaker 1: list is seven to twelve years or more.
28:31
Speaker 2: Here in North Carolina it's probably twenty at this point,
28:35
Speaker 2: is it really? Yeah? I mean people don't even bother
28:38
Speaker 2: anymore because they know that they're never going to get there.
28:42
Speaker 3: Yeah.
28:42
Speaker 1: And you know, I move from the state of Florida.
28:44
Speaker 1: Another one terrible, terrible, like they just services once they
28:49
Speaker 1: become an adult, Like he would have been home with me,
28:53
Speaker 1: just at home with me, or I would have had
28:55
Speaker 1: to pay for him to go somewhere that wouldn't be
28:59
Speaker 1: covered under any waiver program. Well, like I said, we
29:03
Speaker 1: were lucky. We got the waiver in the state of Georgia.
29:06
Speaker 1: So Jordan is actually on a waiver program where he
29:09
Speaker 1: will be taken care of from now into like elder care.
29:15
Speaker 1: Oh wow, through the waiver program, which if you have
29:19
Speaker 1: a child with disabilities who has siblings, that is often
29:23
Speaker 1: a big relief to those siblings to know that that's
29:26
Speaker 1: not going to be put on their shoulders. And I
29:28
Speaker 1: have a daughter that's two years younger than Jordan, and
29:30
Speaker 1: that was something that was really important to me, was
29:32
Speaker 1: I wanted to let her know that he will have
29:35
Speaker 1: services available well into his elder care.
29:38
Speaker 2: Wow.
29:39
Speaker 3: So always check with your state.
29:41
Speaker 1: And like I said, if your child is five, you
29:45
Speaker 1: don't know what the future holds. No one knows what
29:47
Speaker 1: the future holds. I encourage all my parents to get
29:51
Speaker 1: on a list as early as you can.
29:54
Speaker 3: Yeah, that's important.
29:56
Speaker 1: And also I just want to say twopenny before we
29:58
Speaker 1: wrap up. The Security Administration has a child Disability Starter
30:04
Speaker 1: Kit which has detailed document request. So if you go
30:10
Speaker 1: to the Social Security Administration's website, you can download that
30:14
Speaker 1: disability Starter Kit to get all the detailed information.
30:18
Speaker 2: We'll link that up for everyone in the show notes too.
30:20
Speaker 3: Yeah, that would be great.
30:21
Speaker 2: Thank you for mentioning that well, Thank you so much, Shannon. Yes, absolutely,
30:25
Speaker 2: it's been a wealth of information. I know there's a
30:27
Speaker 2: lot more that people need to know and learn, but
30:30
Speaker 2: we can only take one step at a time, and
30:32
Speaker 2: I think this is a really good starter for everyone.
30:35
Speaker 3: I just want to say before we wrap up, because
30:37
Speaker 3: you know.
30:37
Speaker 1: I always say that when you realize that you're going
30:40
Speaker 1: to be a you know, a forever parent, like you're
30:43
Speaker 1: always going to forever a parent your child, it's a
30:47
Speaker 1: hard pill to swallow, but I always tell people.
30:49
Speaker 3: It's different, but it's not bad. Yeah, it's not bad.
30:52
Speaker 1: I mean I was talking to a friend of mine
30:54
Speaker 1: the other day and I said, you know, it's funny
30:56
Speaker 1: because Jordan's twenty eight now, So I have this twenty
31:00
Speaker 1: eight year old man that I'm taken care of, but
31:03
Speaker 1: I can't imagine my life any other way.
31:06
Speaker 2: Yeah, it becomes your normal yees.
31:08
Speaker 3: Yeah, exactly.
31:09
Speaker 1: Like his sister took him out the other day for
31:12
Speaker 1: an evening and that was the first time like they
31:14
Speaker 1: had gone out for an evening, and so I'm only
31:17
Speaker 1: used to him not being here during the day program
31:20
Speaker 1: and so when he wasn't here during those hours, I
31:22
Speaker 1: just caught myself thinking, this is so weird, Like he's
31:25
Speaker 1: just part of who I am and what I do.
31:27
Speaker 1: So just know that it's a different life, but it's
31:30
Speaker 1: definitely not bad.
31:31
Speaker 2: Yeah. Yeah, there's blessings and everything. Yeah, we just have
31:35
Speaker 2: to notice them, right, We just have to be looking
31:38
Speaker 2: for them.
31:38
Speaker 3: Absolutely. Well.
31:39
Speaker 2: I want to let everybody know how to connect with
31:41
Speaker 2: you further, to maybe join your membership or listen to
31:44
Speaker 2: your podcast. You can find all of those links in
31:47
Speaker 2: our show notes for this episode, which are at Parenting
31:50
Speaker 2: ADHD and Autism dot com Slash two seven eight for
31:56
Speaker 2: episode two hundred and seventy eight. Thank you so much
31:59
Speaker 2: for the work that you're doing Shannon and helping families
32:02
Speaker 2: like mine.
32:03
Speaker 1: Well, thank you so much for having me and sharing
32:06
Speaker 1: this information, and I hope it's been helpful for a
32:08
Speaker 1: lot of parents.
32:09
Speaker 2: Absolutely, and I will see everybody on the next episode.
32:14
Speaker 2: Take good care. Thanks for joining me on the Beautifully
32:17
Speaker 2: Complex podcast. If you enjoyed this episode, please subscribe and share,
32:22
Speaker 2: and don't forget to check out my online courses and
32:25
Speaker 2: parent coaching at PARENTINGADHD and Autism dot com and at
32:30
Speaker 2: the Behavior revolution dot com,