"Special Education Advocacy: (Pt. 2) Love for Technology, Nursing, and Self-Determination with Jeanette Lange" (Pt. 2)

Fast 15 Podcast Episode 2: The Role of Self-Advocacy in the IDD Community with Jeanette Lange - Part 2

📍 Hello, listeners! We're diving back into our conversation with Jeanette Lange, picking up from where we left off in our last episode. Join us as we explore crucial aspects of self-advocacy and healthcare decision-making in the IDD community.

Discussion Highlights:
In this episode, Jeanette discusses the importance of introducing technology and communication tools to individuals with IDD based on their readiness. She shares insights into Sam's journey, starting from using an iPad to navigating high-tech applications for adult life. The conversation emphasizes the significance of teaching self-advocacy and self-determination through functional academics, gradually incorporating technology as individuals progress.

The Transition Portfolio:
Jeanette introduces the Transition Portfolio, a comprehensive tool for individuals with disabilities and their families. She discusses its role in helping young adults plan for life after high school, emphasizing self-determination and the importance of ongoing updates.

The Role of School Nurses:
Jeanette advocates for greater involvement of school nurses in the IEP process and emphasizes the need for additional education and support for these professionals. The discussion acknowledges the vital role school nurses play in supporting individuals with IDD and their families.

The Future of Healthcare for IDD Individuals:
Looking to the future, Jeanette shares insights from her fellowship and envisions a healthcare system where professionals across various fields receive proper education to support individuals with IDD. The goal is to ensure that healthcare decisions are made collaboratively, considering the unique needs of each individual.

Closing Segment:
📍📍📍📍📍
Thank you for joining us on this insightful journey. Stay tuned for more impactful conversations, and don't forget to explore The Functional Academics Program at www.sdesworks.com. Until next time, this is the FAST 15 Podcast, transforming special education in just 15 minutes!

Support the show

Barbara Beck is the host of the FAST 15 Podcast. She is a highly dedicated Disability Advocate and Special Education Consultant specializing in IEP Transition Services. Barbara has an extensive background as a special education teacher spanning nearly 30 years. She has dedicated her career to empowering transition-age youth and fostering positive post-school outcomes.

Barbara's expertise lies in providing comprehensive support and guidance to students with disabilities, ensuring their successful transition from school to adult life. She possesses a deep understanding of secondary services and possesses the skills to develop tailored strategies that maximize individual potential.

For more information and resources on special education school-to-adulthood transition planning and independent living, visit www.mykeyplans.com. Join us on social media for updates, behind-the-scenes content, and discussions about special education, inclusion, and disability advocacy. Follow us on Facebook, Instagram and LinkedIn and use #IEPLaunchpadPodcast to join the conversation. Thank you for tuning in to the IEP Launchpad Podcast! 🎧🎙️#IDD #teaching #specialed #specialneeds #InclusionMatters #DisabilityAdvocacy #EmpowerVoices #edtech, #education #edtech, #teachers

Episode Transcript

Speaker 1 (00:00):
Hello listeners, we are picking up from where we
left off in our last episode ofthe Fast 15 with Jeanette Lang.
This is part two of anintriguing conversation about
the role of self-advocacy in theIDD community and the crossover
of special education andpersonal decision making in
healthcare.
Let's dive back into ourconversation with Jeanette.

(00:23):
Let me ask you this at whatstage would you have wanted Sam
to start learning the skillsthat you know he now needs, as
he's in his 20s?

Speaker 2 (00:35):
I think with him.
I think he was about 14, 14 or15.
I think before then he reallyhe used an iPad.
He liked to watch a lot ofvideos on it.
So it's all what they're readyfor, like at that point.
He liked to make videos Like hedidn't what's and it's all.
I wouldn't let my typical 14year old go on just things that

(00:55):
he wanted to do on the internet.
So you have to be able to setyour parameters and what do you
want him to watch on YouTube?
He had no social media.
It was 14, he was starting toget interested, 16, he got a
phone and it was an iPhone andfrom there we had to.
You always have to make sureyou monitor and see, because
there's people send you stuff oryou go into the wrong website.

(01:15):
We've all done it and you don'twant anyone to just knowing
when they're ready for thedifferent tools, the different
applications and things likethat.

Speaker 1 (01:24):
I think communication and self-advocacy and
self-determination there's somany different ways that you can
start teaching those thingsthrough functional academics and
then introduce those tech toolsas they're ready for them Just
typing, just being able to useyour iPad.

Speaker 2 (01:42):
Some people aren't very verbal but there's typed
text to talk on a phone.
So if you have communicationissues, just knowing, or speech
to text, if you're not a goodtypist, then you can do your job
.
So there's technology to help.
Then there's more technology.
I think as you become more ofan adult Like he's, he, during
the adult transition, reallylearned to use his calendars on

(02:03):
his phone to set reminder apps,to set timers.
He learned to navigate the bussystem, and he did that through
technology, because you reallycan't find a map anywhere, no,
no, so you need to be able toaccess those things.
You can't.
You know if you need to.
You know if you're setting upDial-A-Ride or you want to
access the transportation, youneed to be able to use that.

(02:26):
And they have all these socialnetworks and people that follow
them and you still have to teachthem about safety.
And Sam said something to methe other day.
He's do you know whatcatfishing is?
I was like like catfishing,catch a cat.
And he's oh, that's whensomebody online pretends to be
somebody else.
So I didn't even think aboutthat.
He's has learned it throughpractice and through embedded

(02:49):
his in curriculum in hiscurriculum.
Like this is how you're safeonline Show us how you're safe.

Speaker 1 (02:55):
I know my transition portfolio that I will link to in
the show notes, but we I reallywanted to cover that.
That's the, that's the programthat I authored and having a
section for okay, how are yousafe online?
What would you say if you got atext that said this would how
would you respond?
How do you do a password?
How do you a lot of thosepractical skills that really are

(03:18):
a part of the whole transitionprocess, who is safe, who isn't
safe, that whole circle ofrelationships to so important to
know.
You were also so when you'retalking about the low tech.
Sam was coming in to our groupwith some low tech, some
schedules and some differentthings.
Can you describe from his classthat that he's currently in

(03:42):
some of those, some of thosetools that he's using?

Speaker 2 (03:45):
Sure.
So I remember when we firststarted in school he had a
physical calendar because hereally needed those reminders to
look at.
And then, as he got better onthe computer and learned to use
his phone he lives by his iPhonehe started learning to upload
apps onto there.
I know there's a reminder,there's multiple reminder apps
that can you know?
Anything you can think of youcan put it on there.

(04:07):
He's good with QR codes.
He likes to, and that wasn'taround originally.
He had to learn how to take thepicture, the QR code.
You can order stuff throughthat, you can look at menus, and
so he uses a lot of reminders.
He uses his calendar.
The other thing we taught himwas obviously we put all of his
physician doctors in there hisdentist, and so we now, when we

(04:30):
go, I make him make hisappointment.
Oh good, yeah, so he's learningthat.
So he uses his phone.
There's probably so much stuffin there he uses that.
I don't know, but when he wentinto ATI he was basically hand
in paper by the time he left ATI.
He was totally utilizingtechnology.
To how to like LinkedIn, he puton his phone to look for jobs.

(04:53):
He's not a TikToker, but helikes Facebook, and so we had to
teach him what goes on Facebookand what doesn't, because one
day he put all these people'sphone numbers on there that he
had written down.
And then I was like that'sprivate information, and he's
like, oh my gosh, I'm like youhave to take that off.
And that's when we learnedabout private information and
we're teaching them the Lyft appright now.
Or just to learn how to getaround the dial ride and all

(05:17):
that stuff you can put on there,anything you can think of
through your finances, yourportal, your patient portal.
I had to teach him about hispatient portal.
How do you get your healthinformation?
So lots of reminders, a lot ofdifferent apps in there just to
help them throughout the day.
There's ones for if you'rehaving anxiety, like deep
breathing and soft music.

(05:38):
There's ones for that.
Basically anything you canthink of.
There are apps out there tohelp support people through
their day.

Speaker 1 (05:47):
And I love how he's able to tell a story right.
He is so good.
I'm gonna link one of hisvideos in the show notes as well
, just because he's so fun towatch and listen to and people
need to know about Sam.
But he's really got thetechnology and the calendars and

(06:08):
all of that down and I thinkthat does come from a lot of the
curriculum that he got to gothrough.

Speaker 2 (06:14):
We use your transition portfolio.
That's what we looked at At thetime.
I don't think you had writtenit yet.
I think when we first had him,you had started writing it and
you used some of it.
But then you gave us a book andit starts with who am I and my
health literacy, and a parentcan use it, or the individual
can use it, or a caregiver like.

(06:35):
It's not something that you doin a day, right, you could take
a few years to finish the wholething.

Speaker 1 (06:41):
It could be done really, if you're really on it
and do a lot of work in it for aconcentrated period of time,
like maybe in a class orsomething, you could do it in a
semester pretty well.
But it's really designed for amulti-year approach and to be
changed and updated over time.
But yeah, starting out withwhat the big dream is for life

(07:03):
after high school or goes intoself-determination, Like if you
don't think about it and talkabout it, how can you dream it?

Speaker 2 (07:10):
I think it's a great curriculum or starting place for
a parent, for a caregiver, fora para, for just people to look
at If you're not sure where yourkiddo's gonna be and you need
to start somewhere it's a greatplace to start, because there's
lots of things I didn't think ofand there's a lot of great
things in there.
I know you have somephotography things for kids that
maybe aren't that verbal.

(07:31):
Draw me a picture, take apicture cut it out, paste it.
So it's.
You don't have to be all verbalthat or even know like.

Speaker 1 (07:40):
You can do parts of it, and as your child Develops
more and can think more aboutwhat their vision is like, you
can go back to it and really thewhole idea is that the young
adult with hopefully not beingToo supportive if support is
needed, absolutely, somebody canbe a scribe or somebody can

(08:01):
walk through a parent orcaregiver, walk through it, but
the idea is it's their voice,what they want, and being able
to take that to an adult serviceagency, to DVR, to DDA, to home
environment where they're gonnabe living and that's why
Technology right now is one ofthe big things that are being
looked at, because you have tolook at user and capability, and

(08:24):
I know the arc and the FCC andsome other Places are looking
into how do we make sureeveryone has technology?

Speaker 2 (08:32):
How do we pay for the technology?
What is technology?
Because that is really changed,what supports our people?
And we know during COVID, aspeople lost their caregivers and
Couldn't access transportation,a lot of people with
disabilities were left behind.
They really didn't have thesupport and a lot of things
happened and Through that, someof what they learned was the QR

(08:55):
codes, the smart homes, siri forpeople that are blind, the apps
on even your Kindle to read toyou.
Once they had all these thingsset up for them, they were, they
could be independent, like, butyou have to teach it first.
Right?
This is your transition.

Speaker 1 (09:09):
This is your foundational skills.

Speaker 2 (09:10):
Foundational skills.
You have to.
This is why it's so important.
You have to teach it, you haveto make sure they learn it, they
have to practice it, and thenthey have to be able to
Troubleshoot and have someonethere for them.
So what do you?

Speaker 1 (09:22):
see for the hope for the future, with all that you're
studying Through thisfellowship, that you're doing
your thesis, and where do youthink things are heading?
What's ideal, where do we needto be?

Speaker 2 (09:35):
I there's about 25 other women in this group all
over summer outside the US,we're working with nurses in
Ireland that have really thathave embedded the IDD curriculum
into teaching.
Like there's nurses that justgo and learn About the
disability community and that'sall they support, so they have.

(09:56):
So we're trying to model thisprogram.
We're trying to make sure thatif you're a doctor, if you're a
pharmacist, if you're a dentist,if you're a nurse, you're
getting the education you needto support young adults in the
with disability, in the hospitalsetting, in the community
setting, and understand theirunique needs and set up Health

(10:16):
care that meets them where theyare all all about.
Nothing about me without me, Ithink I said that.
Nothing about me without me, Ithink, is the new thing.
Like they and we have more selfadvocates coming out and saying
what they need, like we haveDon't talk about me.

Speaker 1 (10:32):
Yeah, I might have said that wrong.

Speaker 2 (10:34):
I know there's a catchphrase that if you're gonna
, if you're gonna make theseDecisions, that I want to be a
part of it.
And I see that.
Cuz Sam, he's super verbal, buthe wasn't always right.
At one time he was non-verbal.
He signed and use packs andthen throughout the years, even
at nine compared to 12, comparedto how you see him now he could
talk way more than I could andhold a conversation and but not

(10:57):
everybody with a disability isthat verbal right.
So we have to make sure all thepeople are supported wherever
they are, however they'reimpacted.
So even Sam can say what heneeds, but he doesn't speak for
all people with autism, right,he's just.
Everybody's voice needs to beheard.
So that's my hope is we're alldoing everyone's doing different
projects.
Some people are looking atcurriculum, some people are

(11:20):
looking Supporting, having moresupport from the school nurses
with families.
It was my next question.

Speaker 1 (11:27):
Which I told yeah, it is.
How are nurse school nursesdoing with our IDD population?

Speaker 2 (11:35):
I think they're getting better but I think, like
everyone, they don't get.
They don't get the education.
I think it's a specialty and Ithink they see so many.
They see kids with diabetes andthey see.
They see kids with a schoolnurse.
They're amazing.
They see so many things Like ina day.

(11:55):
they have a bleeder, a vomitor,a physical yeah, somebody who's
physically hurt, someone comingwho's mental health like they
have to have a hat that does itall.
So I think we need moreeducation and support and really
I think school nurses need tobe more involved in the IEP
process.
I don't know if we, as specialeducators, always include them

(12:18):
as much as maybe didn't dospeech, but they have a huge
impact.
They really do?

Speaker 1 (12:22):
They need to know the protocols that we have in place
for our students.
We're supporting and servingand we need to be able to have
those conversations before anincident happens.
And I totally agree with youSchool nurses are so amazing and
so knowledgeable and alsooverloaded, right.

(12:43):
Yes, oh yeah, there's notenough.
There's not enough.

Speaker 2 (12:47):
Some schools don't have any and they're really
important because then you have.
If you do have an emergency,you might have the teacher or
the staff in the office nowtrying to give meds or be that
buffer person.
And so school nurses are soimportant and I really think
they need the education just asmuch for behavior, for

(13:08):
supporting, for understandingand then to be that link,
because a lot of families I know.
I knew our school nurse reallywell and she has seen Sam
through when elementary and thenwas his high school Jean.

Speaker 1 (13:22):
I don't want to say names, but Jean knows who she is
.
Love Jean.

Speaker 2 (13:26):
And she was amazing.
There were times Sam went toher just because he wanted to
escape class and you have to beable to recognize that he
escaping because somethinghappened or he really have a
tummy ache.

Speaker 1 (13:38):
Jean's a trusted adult who is so compassionate
and available and a greatrelationship and a part of the
IEP team right, very importantrole that she played, and so I
totally agree with you Having astudent as young as possible
coming to the IEP team, comingto the table, having the school

(14:01):
nurse there and all the otherplayers and I know time is,
we're stretched so thin.

Speaker 2 (14:06):
And you guys are amazing.

Speaker 1 (14:07):
Oh my God, you guys are amazing and trying to find
in the time to do that, but whenit happens it's so powerful and
those are the things thatreally teach our young adults.
Look self-advocacy at the tableto say what you want and need,
not just in your education, butin your healthcare as well.

Speaker 2 (14:24):
Absolutely and I think their role especially.
And I think parents reallytrust school nurse not that they
don't, they trust everyone, butI think school nurses too are
very trustworthy and familiestend to go to them for their
information.
So if they're loaded withreally great information they
can help those families accesssocial security or if they're
having issues where they need OTor PT or supports outside of

(14:48):
school.
A lot of times they're the onesthat know about or given the
information about the ARC ofSnohomish or King County or I've
always would send and I think Iprobably still send you stuff
today of community gatheringsand remember we did the whole
thing about social securitywhere the school nurse, if they
have the correct information andthey have the correct support
write a letter to transition at18, or help them, as you're

(15:12):
gonna be an adult now and thisis your health.

Speaker 1 (15:15):
This is because health is just an important
thing to, and so to make sure sopersonal and people are so
empowered when they have a goodhandle on people aren't doing
something to me.
I'm participating in my ownhealth care decision and having
the personal Commit or thepersonal investment and then the
agency to be able to makedecisions for yourself.

Speaker 2 (15:36):
Absolutely, and I think that's one part that
parents Tend to take care oftheir children's health care for
much.
For longer we do, but I thinkthe earlier we start people on
that health care journey andunderstanding their own
diagnosis, what that entails.
If you have a seizure disorder,you would know about your meds.
If you were diabetic, you, whatdo you need to eat?

(15:57):
Exactly how do you stay healthy?
Exercise mental health is a bigone.
We need to talk about that andmake sure people understand what
they have or where to get help.
And I don't think our kidsalways know that, because
there's always something elsewe're trying to do during the
day.
Right, we're just trying to getthrough with learning.

Speaker 1 (16:15):
Yeah, there's so much coming at us all the time, and
that's one thing you can you cancontrol is your own health.
Yes, yeah, and that'sempowering, yes very much.
I just want to thank you somuch for taking the time to come
in.
You have a wealth ofInformation and knowledge and
understanding, experience andand personal commitment and and

(16:36):
I just love talking to you-Thank you.

Speaker 2 (16:38):
I'm so glad that we have maintained this
relationship and you've gottento see Sam grow up and his
friends and just that we'redoing this and talking.
This is amazing.
So thank you again for havingme.
You're amazing.

Speaker 1 (16:50):
Thank you so much, a heartfelt Thank you to our
generous sponsors, speciallydesigned education services.
Publishers of the functionalacademics program, please take a
moment to learn more about theonly true, comprehensive
functional academics programthat enables students with
moderate to severe disabilitiesto improve their ability to live

(17:11):
independently and showmeaningful growth both
academically and personally,while creating accountability
with data-driven, evidence-basedresults.
Visit Sdesworkscom to learnmore.