"Special Education Advocacy: (Pt. 1) Love for Nursing, and Self-Determination with Jeanette Lange"

🎙️ Episode Show Notes: FAST 15 Podcast 🎙️

📍📍📍📍📍 Welcome to the FAST 15 podcast, your go-to source for game-changing tips, advice, and motivational tools tailored for special educators. Transform your special education classroom in just 15 minutes with insights from amazing educators. Proudly sponsored by Specially Designed Education Services (SDES), publishers of the Functional Academics Program, offering specially designed education services.

Key Points from the Episode:

📍📍 Jeanette's Unique Perspective: A nursing professional with 30 years of experience, specializing in pediatrics, NICU, oncology, and bone marrow transplant.

📍 Transitioning to Special Education: Jeanette shares her experience navigating the special education system with Sam, emphasizing the importance of self-advocacy and transition planning.

📍 Self-Determination and Self-Advocacy: The critical role of empowering young adults to advocate for themselves, especially in the context of the IDD community.

📍 Golisano Fellowship: Jeanette discusses her involvement in the nursing leadership program supporting individuals with intellectual and developmental disabilities. The focus is on educating healthcare professionals to provide inclusive and supportive care.

📍 Impact of Technology on Self-Determination: Jeanette's thesis explores the profound impact of technology, especially during the COVID-19 pandemic, on the self-determination of individuals with IDD.

📍 Bridging the Gap: Addressing the challenges individuals face as they age out of pediatric programs and transition into adult healthcare, emphasizing the need for accessible and understanding medical services.

📍 The Future of Special Education: Highlighting the importance of integrating technology into transition curricula, preparing students for independent living and self-determined decision-making.

Don't miss part two of this enlightening conversation with Jeanette Lange, where she sheds light on the crucial role of school nurses and related service providers. Until then, continue being the champions that you are. Be well, and we look forward to bringing you more insights on the FAST 15 podcast.

📍📍📍📍📍

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 (00:01):
I'm thrilled to introduce Jeanette Lang, a
committed nursing professionalwho blends her healthcare
expertise and loving mom role toempower her son, sam.
Her mastery in nursing andengagement with the Golisano
Fellowship equip her to be Sam'sadvocacy champion, balancing
her profession and family life.

(00:21):
She also aids Sam's education,communication and self-advocacy.
And for Jeanette, it's morethan nursing it's about
nurturing potential anddismantling barriers in the IDV
community.
Let's jump in to ourconversation.
Jeanette Lang is a great friendof mine.
You really are a bright lightand it's a gift to have you with

(00:45):
us today.

Speaker 2 (00:46):
I'm always excited to get to talk to you.
We always have so much fun justtalking about how we met and how
Sam brought us together and howI knew he was going to do well
with you.
Your class was amazing I thinkI've told this story before that
when he walked in yourclassroom, you have all your
kids right draw.
However, they communicate whatthey need to do to be successful

(01:06):
in their classroom, and thatwas a big impact on me because I
was like, wow, I didn't know hecould do this.
And that's when I was likeself-determination,
self-advocacy, we need to jumpon it.

Speaker 1 (01:16):
Those are our words that we're anchoring to for your
son and for a lot of the workthat you're doing, which is one
of the reasons why I wanted tohave you come on.
I could talk for days about Sam, about your son and the
connection that we have, andthat's an ongoing relationship
that I get to enjoy when we getto walk through together.
But you have a really uniquegift in the career that you have

(01:39):
as a nurse and now on a journeyof doing some of your own new
learning and doing some thingsprofessionally that I really
want listeners to hear about andthe crossover from nursing your
career-long nurse and you cantell the listeners a little bit
about your background.
That would be great.
And just the crossover with theIDD community and how nursing

(02:05):
and your point of view and whatyou're doing with the fellowship
that you're partnering with.

Speaker 2 (02:10):
Yeah, that sounds great.
So I've been a nurse for 30years I think, probably as long
as you've been a teacher andI've always been a Peds, nicu
nurse, oncology, bone marrowtransplant and so I was
advocating for other people'schildren before I ever had my
own in the healthcare system.
And then I have two boys andSam has autism and the journey

(02:30):
really started to get themdiagnosed and then, once that
happened, as parents, youradvocates, you're doing all the
stuff.
And then you realize they go toschool and in school you learn
about IEPs, all this newlanguage, and at first you're
just so overwhelmed You're doinga lot of it yourself and then,
as your kiddo gets older, yourealize at some point they need
to start being able to advocatefor themselves.

(02:52):
Kids learn it on their own.
Typically, developing kids andeven our kids maybe learn slower
.
Just at first it's your likes,your dislikes, and I think a lot
of that is taken away in schoolbecause of your IEP right.
You're in the system a hospitalsystem and a school system very
similar.
They're big systems and youhave to learn to navigate it.
So at some point you have toturn to your kiddo and be like

(03:13):
I'm giving you the reins, butyou can't expect it to happen
overnight, just as an advocate,as a nurse or as a parent.
You learn it as you go, and sothat's where you came in,
because you're like, yeah, I'vebeen a transition specialist and
I've worked in the adulttransition and now I'm in school
and I'm bringing some of thethings I've learned to help my
students start, because youdon't know when You're hearing

(03:34):
16.

Speaker 1 (03:35):
Now you've got to set their life up and they have to
be ready, and how overwhelmingfor a parent to sit in an IEP
meeting and start talking.
Your young adult is just barelya teenager and we're talking
about what's going to happen intheir adult life, right?
And coming up with all of thesegoals related to transition.
What I love about you is thatyou took that on, that

(03:57):
collaboration with us as an IEPteam and me specifically as a
case manager, and wanting tostart earlier and grabbing on to
those ideas of, yeah, I need tohave my son be his own best
self advocate.

Speaker 2 (04:13):
Exactly Because at some point he's going to take
the reins and it's any youngadult, right.
We start giving them at 18, 19,20, but in our life, in our
community, we have to startearlier and it also depends on
development.
Where are they and how much canthey assume?
When Sam was younger, he lookedin the meeting, said, oh yeah,
everything's fine, and walkedaway.
When he was 16, 17, he was like, yeah, I want to do this or

(04:37):
this is how I feel about this,and I think I've learned that.
So it's hard to give over thereins, but you have to trust in
the system and the process.
So I think that's so important,really having a strong IEP,
having your kids be a part of itas much as they can, because
not every child is verbal, notevery child develops the same,
not every child is ready, butwhatever they're ready for, you

(04:58):
want to support them and havethem participate to the fullest
extent possible right, exactly.

Speaker 1 (05:04):
With whatever mode of communication that they have
and their comfort level.
But having them and their voiceat the table is so critical to
the whole process.
And what I loved is you allowedthat to happen early on and
letting him go to his teachersand share with them what his
accommodations were and what theneeds were for support.

(05:24):
Things like that andscaffolding is just such a big
part of what you did.
But you can't just like atypically developing young adult
.
You can just let them go.
They learn from their peersjust in a natural settings and
things.
But for him he just needed moreof that strategic scaffolding
along the way.

Speaker 2 (05:45):
Absolutely, and that set him up for success.
Because once he was so proudwhen he brought I can still
remember he brought the paperhome that he wrote and he handed
it to me and he was like I toldsomeone I think it was the
biology teacher or and then sheI remember her she actually was
like I think I'd rather him havetwo peer supports.
Let's see if we can back off onthe para, and I want to give

(06:07):
other kids a chance, some kidsthat I've identified, and then
that created a socialrelationship in itself, a more
natural one than just a parasitting or sort of yeah, so
critical and powerful, yes, andhe's still friends with these
young ladies and men.
They're all in college and he'llsay I texted Lauren or I texted
Madison and I'm hearing abouttheir lives and you're looking

(06:29):
down the road.
Who's going to be his supportwhen he gets out of school?
Because once they graduate ATIat 21 or 22, you got to start
thinking early.
What are they going to do atthat point?
Are they going to attendcollege?
Are they going to work?
Is there going to be somewherethey can go?
And once those supports goafter school leaves, there's a
big gap.
So you have to get them readyfor it.

Speaker 1 (06:52):
Yeah, yeah, to bridge that.

Speaker 2 (06:54):
Absolutely.

Speaker 1 (06:55):
Okay, self-determination and
self-advocacy are so criticallyimportant personally for you,
with your son and what you'vedone as a mom, being such a
great advocate for him, and sowhere's the crossover for you
professionally?

Speaker 2 (07:09):
As I realized, as you age out of the system, you also
age out of your pediatricproviders and you go into the
adult world, which I think thispast year we had around 551,000
kids across the country age outof their programs that are now
entering into adult healthcare.
And adult medicine is not ready.
They're really not.

(07:29):
We don't have enough providersthat understand our kids.
We don't have enoughspecialists.
So it was important to me tobring what we've learned going
through the years in school andwhat I've learned as a nurse and
as a parent.
Hospitals aren't ready.
It's another system that youhave a lot of moving parts For

(07:50):
people that are just trying totake care of their own
healthcare, that don't have anissue.
It's very hard.
So imagine someone who isn'tverbal or has a low health
literacy or just doesn't haveaccess to the same doctors or
the same technology thateveryone has because of a
disability.
We now know kids we're nowseeing in the Down syndrome

(08:11):
community.
We're having Down syndrome.
Adults live longer and longerand now we know that there is a
huge correlation between Downsyndrome and dementia and it's
happening earlier.
So these are things like justnurses and doctors.
We didn't know and now we know.
So now we have to look at thatcommunity and all the other
things that go along with havinga physical and intellectual

(08:33):
developmental hearing site inthe hospital, because everyone
deserves the same access to care.
So that's where I ended upfinding this program.
It's it's nursing leadership insupporting people with
intellectual and developmentaldisabilities and it's about
teaching people, teaching newnurses, getting people with
disabilities into the medicalsystem, educating physicians,

(08:57):
educating just the wholehospital team, because even
sometimes our kids gravitatetowards people that aren't
doctors and nurses and they formthat relationship.
So making sure anyone thatcomes in that room or deals with
our kids respiratory, the staffthat serves food or cleans up
the room, that they all know howto relate to our kids and our

(09:18):
kids know that they can relateto these people that are helping
to take care of them.

Speaker 1 (09:22):
So and understanding the what to share, what not to
share.
How does all that go?
And to feel safe in thatcontext.

Speaker 2 (09:29):
Absolutely so.
It's the Golisano Fellowshipand it's through St John Fisher
University and my thesis, Iguess my paper that I'm doing is
the impact of technology onself-determination in the ID
community, and a lot of thiscame out during COVID, which we
all know.
We had to go from in-personlearning to online and I think

(09:52):
many of our kids did really wellDamn did your son and our whole
class.

Speaker 1 (09:57):
It was amazing Because we had tools, we had
technology we had access and noteverybody has.

Speaker 2 (10:03):
that we know even in Washington.

Speaker 3 (10:04):
people in Seattle and other areas didn't have
technology.

Speaker 2 (10:09):
So yeah, and I remember we met that one day, I
think you were going out to alot of your families and saying
this is Google.
This is just to give us a headsup, because this is the
learning management system.

Speaker 1 (10:20):
This is how we're going to navigate it.
Yeah, google came up.

Speaker 2 (10:23):
Scoology parent view.

Speaker 3 (10:25):
Like all, of this stuff that.

Speaker 2 (10:27):
I had to help them access.
So I had to make sure that Iknew the technology and could
access it to help him get inthere, and he had an easier time
than I did.
He got the platforms or Iremember there was multiple
platforms you had to access andyou had to get in there and some
days were easier than others.
But from there Sam has donereally well with technology.

Speaker 1 (10:48):
He actually in our group, where Sam is
collaborating with some otheryoung adults and creating
scripts and doing videos, and henaturally gravitates toward
technology, and one of thethings that we want to highlight
and really talk about istransition curriculum, with

(11:09):
technology embedded in that andself-determination around how to
use it, when to use it.
How's it going to go fromschool all the way through to
adulthood?
Yes, and so you're reallyfocused on that specific thing.
So tell us more about yourprocess and what from a parent
perspective and then also from aprofessional perspective.

Speaker 2 (11:30):
So I think there's a lot of overlap.
When Sam started his last, Ithink his last year was COVID
and then he graduated.
So we learned a lot about techand Zoom, I think Zoom and
FaceTime, and then Teams and allthese different applications
which I remember from familiesthat had sick kids.
There wasn't that technologypre-COVID where if you had a

(11:50):
kiddo that was sick at home, theteacher came in and taught you.
I know there's been a push fora long time and I know here in
Bothel we're lucky because we dohave some online schools or
programs that, but that hasn'talways been the case.
So I think, as everyone wasimpacted, we saw technology like
just explode with Snapchat andTikTok and all those things, but

(12:13):
you also have to know how touse them.
We need to teach them to besafe and understand it and use
the technology how to use itappropriately right.
Exactly when you get intotrouble, what do you look at?
So I think that's one of thethings that come into
self-determination and come intowhat you need to learn during
your transition, and I know theATI program here does that.
They teach them abouttechnology.
Today, if you want to accessyour own health records, it's

(12:38):
all online.
Like you either have to havesomeone give it to you or access
it for you to get a shot, toget a vaccine, to make a
doctor's appointment no, but no,there's no life.
People are celebrating to dosocial security, to access a
housing, to look at housing it'sall online.
So I think those are the thingswe need to teach in our

(13:01):
transition programs is how doyou use technology safely?
Within that, how do I?
To be self-determined, you haveto make your own choices.
So to have choices, you have tohave access to that information
, yes, and so you need to beable to access your health
information.
You are.
If you look at what happenedduring COVID, technology, which

(13:21):
was always thought of as justthe internet, has now become the
internet of things like whereyou have smart houses, we have
QR codes.
You and Suzanne would probablyknow this more that all the
applications on the phonescheduling reminder apps yes,
the lift apps, the Google mapapps, there's all those kind of
things to remind you to takeyour medicine, to order your

(13:41):
medicine.
So you have to learn how to usethose things to be able to set
up, to live independently.

Speaker 1 (13:47):
Hey there, let's take a pause on this episode of the
Fast 15 as we don't wanna missany of the rest of this
conversation, where Jeanettesheds light upon the importance
of school nurses and relatedservice providers.
Be sure to check back with usfor part two next week to
continue the conversation.
Until then, be well andcontinue to be the champions

(14:09):
that you are.

Speaker 3 (14:12):
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