January 9, 2023 • 43 mins
We kick off 2023 by speaking about sibs and access to technology with one of our past Chairs and Associate Research Professor at the University of Kansas, Shea Tanis.
Resources:
- SLN Endorses The Declaration of The Rights of People with Cognitive Disabilities to Technology and Information Access
- Technology First
- Self-Determination
- Assistive Technology Acts
- Digital Equity Act
- State Assistive Technology Program Information
- Affordable Connectivity Program
- Broadband Equity, Access, and Deployment (BEAD) Program
- National Network of University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD)
- “digital equity forums” Google search
- State of the States
- Appendix K Waivers
- ARPA Funds
- American Rescue Plan
- SibNet on Facebook
- Sibling Support Project
- Consumer Electronics Showcase
- Haptic technology
- Tactile Internet
Music Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz
Music promoted by https://www.free-stock-music.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Chris Berstler (00:03):
Welcome to the sibling Leadership Network
podcast.
The sibling Leadership Networkis a national nonprofit whose
mission is to provide siblingsof individuals with disabilities
the information, support andtools to advocate with their
brothers and sisters and topromote the issue is important
to us and our entire families.
Hello, and welcome to anotherepisode of the sibling
(00:24):
Leadership Network podcast.
We're kicking off the new yearwith one of our past board
chairs Shea Tanis to talk aboutaccess to mainstream technology.
Shea thank you so much forjoining us today.
Shea Tanis (00:36):
Hey, it's absolutely my pleasure. Thanks for having
me.
Chris Berstler (00:39):
Please tell us about yourself and your
experience with the siblingcommunity.
Shea Tanis (00:43):
Yeah, sure, well, um, I am a sibling myself. So,
you know, ingrained in me arethose experiences the life
experiences. I am an associateresearch professor at the
University of Kansas, certainlymy experience has been driven by
my sibling experience. I have abrother with significant
(01:07):
traumatic brain injury. And he'sturning 50 this year. So a
really big milestone. Myexperience with the community
has been really very much theSLN, one of the early board
chairs, and was there maybe thesecond meeting of the genesis of
the sibling Leadership Network.
And so just incredibly thrilledto see the growth, the
(01:30):
expansion, and the vision andmission just expand to what we
had hoped so many years ago,would be from this group. So
happy to join. And I would saymy background is really my PhDs
and special education, severeprofound self determination,
family professionalpartnerships, but I have
ventured into this world oftechnology, been working in it
(01:52):
for over a decade, and it'sreally hard to leave.
Chris Berstler (01:59):
So tell us about your current work with cognitive
access to mainstream technology?
And why siblings should knowmore about it?
Shea Tanis (02:08):
Sure, well, um, my journey into understanding
technology, and specificallycognitive access to technologies
has been, as I said, over adecade, and I would say a lot of
the work that I do falls in someof our traditional buckets.
We've got research, policy,advocacy, and really rights
(02:31):
based acknowledgement. So someof the work has early years
started on just demonstrated therights of people with cognitive
disabilities, to technology andinformation access, we put out a
national and then adoptedinternational Declaration of
Rights in 2013. That has gonearound really demonstrating the
(02:54):
principles for people withcognitive disabilities to have
access to technology. From thatreally has emerged lines,
multiple lines of research, somearound what are cognitive
accessibility features that canbe built into technology
solutions? Traditionally, wehave seen physical and sensory
disabilities addressed intechnologies much better than
(03:16):
cognitive. And so there's a lotof room for growth in terms of
what are the best features? Whatare the best technologies? What
are the barriers to technologiesthat people are experiencing?
And what are the the areas wherewe can see tremendous growth and
innovation? So we talk a lotwith developers. So that's the
research and kind of looking atwhat is the data around
(03:39):
technology utilization. In thepolicy area, we focus not only
on the rights, but also seeingsystemic change across the
nation on technology access. Wespearhead a systems change
effort called technology first,which is really focused on
systems change and ensuring thatfolks with cognitive
(04:01):
disabilities, and frankly, alldisabilities have access to
technologies both throughtraining, policy, funding, as
well as education. And then alsolooking at advocacy. So I have
the luxury of working with sometech companies, startup
companies, and others interestedin technology and being able to
(04:26):
share experiences partner withusers with cognitive
disabilities, our brothers andsisters, being able to tell
those folks how to do inclusiveresearch, how to communicate
what is the needs that theyhave, and demonstrating that it
really is a large consumer base.
There is a return on investmentfor our community, our brothers
(04:47):
and sisters, and it frankly, isa real need. As we see
technology become so ubiquitous.
It's a need for quality of life.
And so that advocacy andeducation around, making sure
that technology is not justsomething that's a luxury for
folks, but is something that isa necessity for real, true
(05:09):
community living. So that's alot of what we do a lot of what
my team and I do, but why is itimportant to siblings? Is that
the other part of the question?
I think, I think why it'simportant to siblings, again, is
because our future is going tobe driven and is already driven
(05:32):
very much by technology. And ifwe continue to isolate folks,
our brothers and sisters, by notallowing or not providing
opportunities to engage intechnology, in my opinion, we're
just creating new walls ofinstitutions, and those become
digital walls. Those becomebarriers that really disengage
(05:55):
our brothers and sisters fromaccess to what are the
opportunities in the world? Sothings like money management, so
much has gone digital? How canwe be able to do you know,
transactions? How can we adaptour education to support our
brothers and sisters and beingable to do those interactions,
as we see growth? You know,change it is, is not money,
(06:18):
actual hard money and dollarbills and change aren't used as
frequently anymore? How do weeducate around that? Not only
that, but communication, justgeneralized communication and
information. So much has becomedigital. And not only has it
become digital, but there arealso new ways of doing
accommodations modifications,that allow our brothers and
(06:40):
sisters so much more access, ifat least they know about it, so
many overlays onto web platformsthat will change the content. So
it's understandable. Text toSpeech is huge. For our brothers
and sisters, to be able tounderstand what's going on
videos, tutorials, there's somuch more access to information
(07:04):
and engaging with communitiesthrough digital and technology
platforms, that if we don't asksiblings, as brothers and
sisters and loved ones, don'thelp advocate for the necessity
for that we are really notsupporting our brothers and
sisters and being able to accesswhat is going to be the future
of community.
Chris Berstler (07:24):
It's exciting.
Shea Tanis (07:25):
It is. it's alot.
It's hard, because it is soexciting in there, it never
ends. There's always innovationin this space.
Chris Berstler (07:33):
So, I often hear the term assistive technology.
Can you tell us what thedifference is between technology
and mainstream technology? Sure.
Shea Tanis (07:44):
So the problem of technology has always plagued
our, our discipline, we see alot of, you know, terms used in
different ways. And we seecertainly them applied when they
become really exciting andinnovation, terms like self
determination, where it wasadopted, without having a real
(08:05):
consistency with terminology.
And so the assistive technologydoes have a federal definition,
it does have a definition in theAssistive Technology Act in law.
The key I think, in thatterminology is that assistive
technology is intended tomediate an impairment. And so
what differentiates ourdiscussions a lot of the time
(08:27):
around assistive technology, andwe generally use or our team and
we advocate for the use of aterm called, or a term we use
technology solutions. Reallywhat differentiates it is that a
lot of the other technologiesthat we see, assistive
technology really came aroundwhen people were customized and
specializing technologies toaddress a certain impairment. So
(08:50):
communication devices,augmentative, and alternative
communication devices, thosewere specifically designed for
people with disabilities to beable to communicate a specific
function to mediate thatspecific impairment. But with
the advancements oftechnologies, we've seen it that
there are so many moretechnologies that integrate,
(09:10):
what are features and solutionsthat allow for mediating
impairments, but so much more.
And so, you know, generally whenwe're talking about more
mainstream versus assistiveassistive is intended to mediate
a specific impairment, andthat's how it's funded. And
that's really critical to theconversation. Because part of
(09:34):
what we do in our technologyfirst and systems change efforts
is looked to modernize thatlanguage, where there's a lot of
when we fund technologies, it'sreally specific to a type of
technology and sometimes we seetechnologies pared down and
stripped of some of the otherfeatures just so they can be
(09:54):
applied to mediate that specificimpairment. Well let's be real
are technologies are We're multidimensional, they're
multifunctional now. And so whenwe're trying to incorporate an
advanced not only policy, bututilization, we're talking about
really what are technologiesthat come off the shelf that
aren't specialized for a certainperson that aren't specialized
(10:17):
for a certain impairment, butcan be used across people that
with universal design, andcognitive accessibility built
in. But just to expand a littleon the reason we use technology
solutions, is there's a couplereason that this is advantageous
not only for practice, but alsofor policy. So first of all,
(10:40):
using technology solutions, itallows us to use it as an
umbrella term. So we can talkabout mainstream technologies,
we can talk about assistivetechnologies, we can talk about,
what are the technologies tocome the future technologies
under an entire umbrella. Byusing the term solutions, we we
(11:00):
focus on goal orientedapproaches, it means that we
really are looking for the rightfit of a technology that matches
a person's person's goals andwhat they're hoping to have that
technology function as, ratherthan a specific thing that's
going to mediate an impairment.
Another reason we'd like to usethat technology solutions,
terminology is because it fitswith our colleagues who are
(11:24):
engineers and designers. This islanguage that they use. This is
language that meets their needs,and also is reasonable when we
start to look at how we do userexperience and user design. The
other reason we use the solutionis for that very reason that we
see so many technologies thatare multifunctional, that we can
(11:45):
see, they don't do like asmartphone, it doesn't do one
thing, it does 1000s of things.
And by not looking at theassistive part where it's a
specific function, if we startto look at solutions, we're
looking at a whole approach ofthat. Another reason it's
valuable is because it doesn'tsay it's just one specific
(12:08):
technology that we're going tofund. It's not a, you know,
specific brand. It's not aspecific type. But it really
encompasses when we saysolution, we're really focusing
on the process for problemsolving, which is really
advantageous for family members,because it means there's a whole
slew of opportunities thattechnologies can serve not just
(12:31):
one specific one that we have amenu that we can choose from.
And so you know, it really iswith this goal, person directed
approach that we like to thinkabout all the technologies as
solutions and use that term,when we're looking at policy,
practice and research assiblings ensuring to make sure
(12:54):
that we have all theopportunities for our brothers
and sisters.
Chris Berstler (12:58):
How can sibs best support our siblings, who
could benefit from improvedaccess to technology solutions.
Shea Tanis (13:06):
So much at this point is about the advocacy and
inclusion. One big thing that weas brothers and sisters can do
is share technologies with ourbrothers and sisters, ensuring
that they have opportunities tosee what we're using to try out
what we're using. So we have anidea and they have some
(13:27):
opportunities, you know, we assiblings naturally have this
affinity for giving our siblingsmore opportunities than others.
And giving them opportunities totry to play with to engage with
technologies, is something thatoftentimes we see the siblings
(13:47):
are the ones who are morewilling to do that than maybe
our parents are, because oftheir discomfort with
technologies. So it's very muchgenerational, we have seen, but
having us as leaders, in termsof providing opportunities for
technology is huge. Also, as wealways do, continuing to
(14:09):
advocate that our siblings bepart of the conversation. That
means with things like manystates are going through digital
equity programs, they havedigital Equity Act programs that
are funded in the states now,making sure that our siblings
are part of those communities,or at least our voices are
heard, so that when these newbroadband accessibility features
(14:34):
and policies are built, they'rebuilt with our siblings in mind.
And you know, frankly, we do wespend a lot of time doing
advocacy with and alongside ourbrothers and sisters, this is
just another opportunity for usto enter a space where it's not
always a natural consideration,to have our community engaged in
(14:57):
that conversation, but yet it isessential Talk to future
supports.
Chris Berstler (15:02):
If a sibling, a sibling who's listening out
there wants to access or getprocess started accessing
technology solutions for theirsim, how would they begin their
journey?
Shea Tanis (15:14):
It's a great question. Um, I think, you know,
we always start with, what isthe sibling what? What does that
sibling with a disability, whattechnology could help them
bridge the gap between theircurrent skill set, and where
they want to achieve something.
So let's say let's say we arelooking to advance employment.
(15:37):
Okay, say they want to get ajob. One place to start is look
at different jobs that can bedone online, look at different
technologies like zoom, that wecan help them learn to help fit
that help them achieve the goal.
(16:00):
Many siblings will say, hey,they want a relationship they
want, they want friends. Theywant, we want to help them get
friends. That's our goal. Sowhat can be our role as
siblings? Well, we can help innot restricting access to
technologies like social media,but helping give opportunities
(16:23):
to scaffold learning. And soagain, it always starts with
what the sibling wants, whatthey're looking for, where we
can help. But I can guaranteeyou almost every I mean, I
there's not a domain of living,that you could give me where we
can't find technology solutionsto aid in advancing supports.
(16:45):
That goes with home that goeswith leisure that goes with
communication. There is so manysolutions out there that can
enhance that can provide newopportunities. That part of the
criticism we always get part ofthe the barriers we hear is
there's just too much. There'stoo much out there to know what
(17:07):
the heck is out there, give me acatalog, I can't tell you how
many projects, national andstate level and local have been
focused on creating technologycatalogs. Okay. The challenge
with this is that technologymoves at such a pace, that the
moment you've created a catalog,everything's been upgraded and
(17:28):
outdated. It is just a problem.
And because there's so muchavailable, so the thing we we
say is start with thetechnologies that you know and
use, I mean, what's familiar toyou, because guess who's gonna
be the largest one of thelargest supports for your
sibling and learning, and alsodealing problem solving new
(17:52):
upgrades of those technologies.
So do the technologies, youknow, find the ones that will
enhance their goals, the thingsthey want out of life? Siblings
are awesome at knowing whattheir said hopes and dreams for
the future, and being able tohelp realize those dreams. And
(18:15):
technology is just one supportto be able to do that.
Chris Berstler (18:19):
In regards to starting that process. Do you
have any advice about how asibling might get funds or how
to fund that search?
Shea Tanis (18:32):
so when we do national research, and we have
some that we've been doing forsome time, we'll be updating our
surveys from state operatedagencies or state DD agencies,
also provider agencies aroundwhat are the barriers
technology? Lo and behold, thenumber one response they always
(18:53):
say is funding. Okay. Ourresearch demonstrates that in
states, there's an average of 12different funding authorities
that are available fortechnology as providers there
that doesn't include grants thatdoesn't include what can be
fundraising, that doesn'tinclude family resources, that
(19:15):
doesn't include donations, thereare so many resources but yet
the challenge has always beenit's too expensive. Well, let's
prioritize. Let's start byprioritizing. First of all, when
you look at the Nationalopportunities for people to use
technology, folks with under Ithink it's $27,000 annually,
(19:38):
prioritize having a phone Okay,so the priority rounding using
technology means that even whenthere are limited resources, the
resources are spent on thosetechnologies because of the
necessity and we have to startconsidering that access. But
practically, what are sometechnology solutions? ones that
(20:00):
and how do we deal with funding?
Well, the Assistive TechnologyAct programs, the A TAP programs
in every state, they're fundedthrough the Assistive Technology
Act, there is one in everystate, it is one of their core
charges to be able to list in astate funding opportunities for
technology. So on their states,they should, because it's a core
(20:23):
function, have opportunities tofunding. Unfortunately, our
field tends to default toMedicaid funding, or to
alternative funding sources fortechnologies. But let's be
honest, the majority of familiesdon't use Medicaid to gain their
own technologies. They look fordeals on Black Friday, and they
(20:47):
look for deals where they canget multiple pieces of equipment
for cheap, right, they look forfamily plans. And so we need to
start, as we do with ourselves,thinking about those as
priorities for our siblings. Butthere are so many resources out
there. Broadband is another onewhere people say, you know,
(21:09):
there's just no funding forbroadband, and there's no
access. Now, I don't deny thatthere are peaks and valleys of
access, that there still has alot of work to be done.
Certainly, the advancements and5g and some of the technologies,
we hope are going to solve thoseproblems over time. But let's
look at what's being funded. Imean, you had $14.2 billion
(21:30):
invested in the affordableconnectivity program for the US.
Okay, that has requirements todo, but it gives people money
for access to broadband, we alsohave $42 billion for the
broadband equity access anddeployment program, that's
(21:50):
grants to states to ensure thatpeople have access to broadband.
So guess what, we need to bepart of that conversation. So
when the access piece comes toour family members, and there is
a lack of resources, we arereally taking advantage of the
resources that are available.
(22:13):
And not just simply saying wedon't have access to there are
definitely solutions forfunding.
Chris Berstler (22:19):
Awesome. This is all great information. Thank you
so much. What barriers stillexist for marginalized
communities who want to accesstechnology solutions?
Shea Tanis (22:31):
Yeah, I think there certainly are, there are
barriers to you know, I don'tthink and our colleagues in tech
companies will tell you, wedon't understand cognitive yet.
We are recognizing that it's anecessity, that we need to start
understanding how to build incognitive features. But we don't
(22:51):
really have the data andinformation yet to demonstrate
impact, to demonstrate whatproducts are best, what features
are best. So I think a lot ofthe barriers are information,
information of resources,research, information on data.
Those are really big barriers,in terms of making sure that we
(23:15):
get to a point where there areproducts that we can use. But
the other barrier that we see.
And it was one of the bigquestions, we asked State
Directors of DD services andproviders across the nation.
Second to resources wasknowledge. And that meant
knowledge about technologiesthat have accessibility features
(23:39):
built in knowledge about how totrain people on technologies,
like what are best practices,and how you train around
technology solutions. Makingsure that providers and our
educators and those working withour brothers and sisters have
some knowledge about technologyand have ideas of how to
(24:03):
integrate technology into theirlives. And so when you know,
once you move past, the initialfunding is my barrier, it
becomes about knowledge. And wehave got to and it's a lot of
what we try to do. But thereneeds to be more programs where
(24:23):
we train people about technologyso that there is opportunity.
And we just don't have enough.
We don't have enough data tovalidate it. And we don't have
enough folks out there who wecall our tech champions. And
oftentimes our tech championsare our brothers and sisters
with disabilities. They are theones who are saying we need
(24:45):
this. We want this. We need yourhelp in getting this. But we
need more of those technologychampions who are willing to
train others about why it'simportant, why it should be
integrating and What resourcesand solutions are available, but
it is hard, because it's alwayschanging because there's so much
(25:08):
innovation, we just need morepeople, we need more people
interested, engaged, and readyto deploy, to be able to support
this kind of innovation andreally movement towards access.
Chris Berstler (25:23):
So for any potential tech champion, who may
be listening out there, what isthe best way for them to try to
get involved in this process?
Shea Tanis (25:32):
Oh, that's a great question. Um, I think, you know,
initially, it's, it's findingyour like minded partners. Um,
so I'm gonna, I'm gonna beselfish. And I'm gonna say,
they're great. You said,there's, you know, 67, you said,
University Centers on excellenceand developmental disabilities,
(25:54):
many of which do have a framingaround some technology access,
that's a great place to start.
There are also folks that areworking in policy. These folks
that are working on digitalequity plans, they often have
open forums where they arelooking for consumer engagement.
They're looking for those users,the user experience, to be able
to integrate and have in thoselistening sessions, that's a
(26:16):
great place for you to go.
Another thing for you to do isif you aren't already in a tech
first state, helps make sureyour state is a tech first
state. And we have 22 statesthat we have recognized as
having initiatives aroundtechnology first, meaning that
(26:37):
they've already started theprocess of engaging in a systems
change effort. And it's, youknow, relatively easy contacting
our team at the state of thestates at KU, we can connect you
with the folks that are in thestate that are working on
technology first. And that's agreat place to start, because
(27:00):
usually there are councils,statewide councils affiliated.
Sometimes there's legislationthat's implied. And many times
those are the folks that aregoing to be able to ingrain
siblings as part of thegrassroots effort.
Chris Berstler (27:14):
What impact has the pandemic had on access to
technology solutions?
Shea Tanis (27:20):
Well, I would say so I've been in this field over a
decade. And the pandemic was thetipping point. So the pandemic
not only demonstrated, what wasthe immense reliance on
technology for information, butit also demonstrated that if you
(27:45):
didn't have access to thatinformation, your life was at
risk, because you didn't knowwhat was happening in terms of
how to stay safe, what practicesto use, where to get your
booster shots, or your where toget treatment, where to get
tests. And so the pandemicreally demonstrated tangibly,
(28:08):
the Reliance our society has ontechnology. And so what it also
tangibly demonstrated is that ifyou didn't have access to that,
it was going to be lifethreatening. And when you look
at the impact of the pandemic,on our community, our brothers
and sisters with significantcognitive disabilities or those
(28:31):
with intellectual disabilities,the data shows that ours was the
second most impacted communitythroughout the pandemic. I think
it was the New York Times whocalled those with disabilities
and the aging communitycommunity, the, the disregarded
and the disposables, thatoccurred from the pandemic. And
(28:55):
so it really demonstrated ourreliance on technology. But so
in turn, the positive side ofthat, is it also really
catalyzed and accelerated? Whatwere new problems to be solved
with technologies. So across thestates, we saw what were called
(29:18):
appendix K waivers, which wereemergency waivers for home and
community based services, manyof which those waivers include
technology solutions to addressthe emergency needs, things like
remote telehealth telehealthservices, things like electronic
signatures to ensure thatpeople's case plans went through
(29:41):
a lot of technologies,medication dispensers, things
that were not traditionally usedin our waiver services, but were
allowable because it was anecessity of the pandemic. Now
that we have seen some of thismovement we have, you know, Oh,
the ARPA funds the Americanrescue act plan programs. And
(30:05):
when we do the research on it,every state except for one has
added technology into theirarpa. It's called ARPA for short
plans for the state. So we arenow investing in a lot of new
pilot programs, a lot of newinnovations across the states,
there's some really excitingthings that we're state seeing
(30:28):
states work on with their ARPAfunding, we're involved with
looking at digital health,wearables in what are accessible
in those. In Oklahoma, we havesome colleagues we work with in
Ohio around broadbandaccessibility, and what are
telehealth services. But that'sjust a couple, almost every
(30:50):
state is engaged in a lot ofnuance in these programs, to be
able to not only get kind ofaccess for people and learn
about that, but also to maintainsome of the services that were
applied during the pandemic,because our brothers and sisters
and our families havedemonstrated that, you know,
(31:10):
it's not a one size fits all, weneed a customized approach to
our services and supports. Andmany of us want hybrid
approaches, that meanstechnology driven and in person.
And so we're seeing a lot ofmovement. And it's really
exciting, because it means wehave to modernize. And we have
to really shift, what has beenour traditional approaches. One
(31:31):
of our concerns, however, isthat we have a whole bunch of
money that is being deployed ina very short period of time, it
has to be deployed originally by2024, now extended to 2025. But
they're upwards of millions ofdollars in states like $42
million. In some states, thechallenge is for us as a
(31:54):
community is not only to getenough great programs out there
to see, but to also captureinformation on impact. So that
while we have these new greatpilot programs, they don't
become the one and done, theybecome something that we have
enough evidence to then sustainand advocate for over time once
this initial and emergencyfunding is completed. So there's
(32:20):
a lot of opportunity right now,a lot of innovation going on.
But it is going to be our job asadvocates, and those who have to
deal with the test of time,right family members, those that
have loved ones, to make surethat we build a system where we
help with a system that allowsfor long term sustainability of
(32:43):
these solutions. Becauseotherwise, we've all been part
of pilots, siblings have beenpart of a million pilots. And
it's great to do the research,but it's not great. When it's a
one and done. We really want tosee some impact measurement,
some outcome measurement, andlong term sustainability for
growth.
Chris Berstler (33:04):
What changes need to be made to ensure access
to technology solutions for thewider disability community?
Shea Tanis (33:12):
Yeah, I think one is policy modernization, we have
really outdated policies, interms of state and access level
where it really was specific tosome of this old technology. And
so we really need to focus onsome policy modernization
approaches, so that we canexpand the access. So that that,
(33:36):
you know, that's one thing. Ithink also ensuring that people
think of technology as anecessity for life, rather than
a luxury. That's it, that's ashift in thinking for many
people. Because technologysolutions end up on the back
(33:59):
burner for folks with cognitivedisabilities, when it's just we
want to make sure they have inhome health care, or nursing,
you know, supports technologyends up being on the backburner
where it can be initialsolutions we start to think of,
and so it takes a little bit ofa change in thinking to allow
(34:21):
people you know, it's almostlike and I, I like it too, when
I learned about job coaching.
This idea that like, you know,once you've learned about
searching for a job for folkswith disabilities, you start to
look at the world in a differentway. You start to go into any
place and you say, Oh, I knowjob will fit that person. I know
a job help. Oh, I know. It's, Isee you have this need. I know
(34:44):
somebody who can do that. Ithink it's a different lens.
That once you start thinkingabout technology solutions as an
integral part of our everydayexperience, you recognize what
an asset acity it becomes foreverything we do. And so I think
we have to as siblings, asfamily members, and sure people
(35:06):
don't forget our siblings, andthink of it as an extra, they
think of it as a necessity. Andthat's, that's a lot of what we
have always done as familymembers has changed other
people's things aroundopportunities, and access, and
doing that with our brothers andsisters. And it's just gonna
take louder voices, it's gonnatake us coming together to say,
(35:30):
No, this is not a luxury, thisis a necessity for their future
quality of life, for theirhappiness for them to be able to
integrate into what is oureveryday experiences. But we
talk about a what are theroutines and rhythms of American
culture rate, and that's, that'swhat we want. And then there's
(35:51):
no mistaking that the naturalroutines and rhythms have to
deal with technology, all youhave to do is sit on a train or
sit on a plane and see everybodywith their faces down. So we, I
think what we need to do is helppush our society further in
understanding the need for thatculture shift. And the other
(36:11):
thing we can do is tell ourstories, tell stories of how
technology has supported ourloved ones. So what are the
experiences that they want tohave? Well, you know, my brother
types every day, he's writing,he's, he's learning to write
with new technology tools, youknow, many of the word programs
(36:33):
that he didn't have access tobefore, he's learning, it's
scaffolding, being able to tellthose stories, to demonstrate
the impact is going to be reallyimportant. And we need to have
more of those,
Chris Berstler (36:48):
what is the best way to get involved or to tell
our story?
Shea Tanis (36:53):
Yeah, to tell your story. Um, you know, there, if
you have a state, that is a techfirst state, they are collecting
those stories on a regularbasis, which is great, because
we see that the other thing is,get on a platform, get on a, you
know, a Facebook post or any ofthose social media and say, Hey,
(37:13):
look at this great innovationthat's working for me, we are
known for our networkingopportunities, right. And the
more we share that internally,the larger it grows, right?
It's, it's that drop in the pondthat just expands and expands,
the rings expand. So we cansimply do it by sharing, you
know, subnets, a great place tostart sharing stories about
(37:36):
that. Our partners there at thesibling Support Project, sharing
stories across these networks,ensuring people say, hey, you
know, oftentimes we findtechnologies we want to use by
talking to our friends. Whatwhat do you use that works for
you? Hey, what kind of phone?
Did you get the news such andsuch phone? What do you like
about it? What do you not likeabout it? That's a great
(37:58):
opportunity for us to networkacross what is our natural
community. And many times we'reable to share those solutions
across family members. And holdyou know, we've had conferences
where families have shared, hey,this is the solution that worked
for us. You might find it usefulhere solutions like it, that you
(38:19):
might find solutions, you know,meetups, all of those provide us
opportunities to spread the wordand share our stories.
Chris Berstler (38:29):
What possible innovations are you personally
excited to see in the future ofthis field?
Shea Tanis (38:37):
You know, the beauty of working in this space, as
there are always newinnovations. And there's always
something new coming out. One ofmy favorite things to do. And
it's very, it's definitely likegeek out academic type thing is
I like to look online at everyyear, the consumer electronics
(38:57):
showcase has, you know, newproducts, new startups, and I go
through it and I look for whatare cool products, right? What
are things that might be useful.
And it's interesting that goodproducts, they do have what is a
category for accessibility. Butoftentimes, the products that I
enjoy the most are the ones thataren't in that disability
(39:17):
specific category, the ones thatare just built well with
universal design that are reallycool. And so there's so many
innovations. It's hard to pickone I will say for a while, I
have been really interested inwhat is haptics, which is the
sense of touch. And thattechnology. There is something
called the tactile internet,which we're waiting for 5g which
(39:41):
is that advanced broadband tocatch up to to us. Essentially,
imagine giving a loved one a hugand then feeling the sensation
of that with a shirt on. Okay,that's a sense of touch. The
reason I really enjoy haptics isbecause I first so much We have
our siblings who have struggledwith different types of
(40:02):
communication sources. It adds anuanced modality for us to do so
much. And again, you know,gestures, movement
communicating, you know, thinkabout our brothers and sisters
who are nonverbal, how much morethey communicate by a gesture
and a function, we can capturethat and communicate that with
(40:24):
new technologies. Right, there'sso the haptics is something I've
been personally really excitedabout. I mean, we see AI
movements, I will say, AIconcerns me, artificial
intelligence, we've done someresearch on ethics of that. It
is really important for us assiblings to be vigilant, it's
(40:45):
important to know that, youknow, we, we don't want to all
over automate, because so muchof what we have advocated for so
long is self direction and selfdetermination. And over
automation, the assumption thatwe need to automate for people's
needs is something that I thinkwe have to be vigilant of. But I
think it also opera, it providesa lot of nuanced opportunities
(41:10):
that we hadn't thought through.
But I, you know, there's just somany technologies that I mean, I
think healthcare wearables aregoing to, if we train and make
them accessible to our siblings,could expand longevity, you
know, and be able to monitorself awareness to increase self
(41:32):
awareness of our of our bodiesand their bodies. That's hugely
important. And then I guess,finally, the one that really
excites me is making sure thatnow we have so many ways of
making information andcommunication accessible, that
it is just opened up doors, tomaking sure that our brothers
(41:56):
and sisters are part of a largercommunity. So connected
communities, allowing for themto to meet with others without
having to physically be therejust expands the potential of
social networks for support thatI think we just never had
before. It's hard to it's hardto say one.
Chris Berstler (42:17):
It all sounds so exciting. Thank you for.
Shea Tanis (42:20):
It's tremendously exciting. And I will say, when
we get involved in theconversations with developers
and engineers, it gets even moreexciting because of just this
generation, and brainstormingand innovation is just crazy.
And we're seeing so many moreopportunities with inclusive
(42:43):
design that that really can makereally amazing products and
solutions.
Chris Berstler (42:50):
Awesome. Shea, thank you so much for sharing
all of this exciting newinformation with everyone. I'm
definitely excited for thefuture. I hope some of our
listeners are as well. Anyresources that che has mentioned
you can find in the descriptionbelow. So thank you so much for
joining us che it's been anabsolute pleasure.
Shea Tanis (43:10):
Thank you so much for having me. And it is always
a pleasure to join the SLN withwhat are all my brothers and
sisters who I've grownrelationships with over time and
we're just so thrilled to seethis type of, you know, podcast
and information going outthrough the SLN so thanks for
having me.
Chris Berstler (43:28):
Thank you. Find resources, tools and information
about the sibling experience onsibling leadership dot for the
sibling Leadership Network is anonprofit, and we rely on
support from our audience. Findthe donation button on our
homepage and contribute to theever growing sibling movement.
Welcome to the sibling Leadership Network
podcast.
The sibling Leadership Networkis a national nonprofit whose
mission is to provide siblingsof individuals with disabilities
the information, support andtools to advocate with their
brothers and sisters and topromote the issue is important
to us and our entire families.
Hello, and welcome to anotherepisode of the sibling
(00:24):
Leadership Network podcast.
We're kicking off the new yearwith one of our past board
chairs Shea Tanis to talk aboutaccess to mainstream technology.
Shea thank you so much forjoining us today.
Shea Tanis (00:36):
Hey, it's absolutely my pleasure. Thanks for having
me.
Chris Berstler (00:39):
Please tell us about yourself and your
experience with the siblingcommunity.
Shea Tanis (00:43):
Yeah, sure, well, um, I am a sibling myself. So,
you know, ingrained in me arethose experiences the life
experiences. I am an associateresearch professor at the
University of Kansas, certainlymy experience has been driven by
my sibling experience. I have abrother with significant
(01:07):
traumatic brain injury. And he'sturning 50 this year. So a
really big milestone. Myexperience with the community
has been really very much theSLN, one of the early board
chairs, and was there maybe thesecond meeting of the genesis of
the sibling Leadership Network.
And so just incredibly thrilledto see the growth, the
(01:30):
expansion, and the vision andmission just expand to what we
had hoped so many years ago,would be from this group. So
happy to join. And I would saymy background is really my PhDs
and special education, severeprofound self determination,
family professionalpartnerships, but I have
ventured into this world oftechnology, been working in it
(01:52):
for over a decade, and it'sreally hard to leave.
Chris Berstler (01:59):
So tell us about your current work with cognitive
access to mainstream technology?
And why siblings should knowmore about it?
Shea Tanis (02:08):
Sure, well, um, my journey into understanding
technology, and specificallycognitive access to technologies
has been, as I said, over adecade, and I would say a lot of
the work that I do falls in someof our traditional buckets.
We've got research, policy,advocacy, and really rights
(02:31):
based acknowledgement. So someof the work has early years
started on just demonstrated therights of people with cognitive
disabilities, to technology andinformation access, we put out a
national and then adoptedinternational Declaration of
Rights in 2013. That has gonearound really demonstrating the
(02:54):
principles for people withcognitive disabilities to have
access to technology. From thatreally has emerged lines,
multiple lines of research, somearound what are cognitive
accessibility features that canbe built into technology
solutions? Traditionally, wehave seen physical and sensory
disabilities addressed intechnologies much better than
(03:16):
cognitive. And so there's a lotof room for growth in terms of
what are the best features? Whatare the best technologies? What
are the barriers to technologiesthat people are experiencing?
And what are the the areas wherewe can see tremendous growth and
innovation? So we talk a lotwith developers. So that's the
research and kind of looking atwhat is the data around
(03:39):
technology utilization. In thepolicy area, we focus not only
on the rights, but also seeingsystemic change across the
nation on technology access. Wespearhead a systems change
effort called technology first,which is really focused on
systems change and ensuring thatfolks with cognitive
(04:01):
disabilities, and frankly, alldisabilities have access to
technologies both throughtraining, policy, funding, as
well as education. And then alsolooking at advocacy. So I have
the luxury of working with sometech companies, startup
companies, and others interestedin technology and being able to
(04:26):
share experiences partner withusers with cognitive
disabilities, our brothers andsisters, being able to tell
those folks how to do inclusiveresearch, how to communicate
what is the needs that theyhave, and demonstrating that it
really is a large consumer base.
There is a return on investmentfor our community, our brothers
(04:47):
and sisters, and it frankly, isa real need. As we see
technology become so ubiquitous.
It's a need for quality of life.
And so that advocacy andeducation around, making sure
that technology is not justsomething that's a luxury for
folks, but is something that isa necessity for real, true
(05:09):
community living. So that's alot of what we do a lot of what
my team and I do, but why is itimportant to siblings? Is that
the other part of the question?
I think, I think why it'simportant to siblings, again, is
because our future is going tobe driven and is already driven
(05:32):
very much by technology. And ifwe continue to isolate folks,
our brothers and sisters, by notallowing or not providing
opportunities to engage intechnology, in my opinion, we're
just creating new walls ofinstitutions, and those become
digital walls. Those becomebarriers that really disengage
(05:55):
our brothers and sisters fromaccess to what are the
opportunities in the world? Sothings like money management, so
much has gone digital? How canwe be able to do you know,
transactions? How can we adaptour education to support our
brothers and sisters and beingable to do those interactions,
as we see growth? You know,change it is, is not money,
(06:18):
actual hard money and dollarbills and change aren't used as
frequently anymore? How do weeducate around that? Not only
that, but communication, justgeneralized communication and
information. So much has becomedigital. And not only has it
become digital, but there arealso new ways of doing
accommodations modifications,that allow our brothers and
(06:40):
sisters so much more access, ifat least they know about it, so
many overlays onto web platformsthat will change the content. So
it's understandable. Text toSpeech is huge. For our brothers
and sisters, to be able tounderstand what's going on
videos, tutorials, there's somuch more access to information
(07:04):
and engaging with communitiesthrough digital and technology
platforms, that if we don't asksiblings, as brothers and
sisters and loved ones, don'thelp advocate for the necessity
for that we are really notsupporting our brothers and
sisters and being able to accesswhat is going to be the future
of community.
Chris Berstler (07:24):
It's exciting.
Shea Tanis (07:25):
It is. it's alot.
It's hard, because it is soexciting in there, it never
ends. There's always innovationin this space.
Chris Berstler (07:33):
So, I often hear the term assistive technology.
Can you tell us what thedifference is between technology
and mainstream technology? Sure.
Shea Tanis (07:44):
So the problem of technology has always plagued
our, our discipline, we see alot of, you know, terms used in
different ways. And we seecertainly them applied when they
become really exciting andinnovation, terms like self
determination, where it wasadopted, without having a real
(08:05):
consistency with terminology.
And so the assistive technologydoes have a federal definition,
it does have a definition in theAssistive Technology Act in law.
The key I think, in thatterminology is that assistive
technology is intended tomediate an impairment. And so
what differentiates ourdiscussions a lot of the time
(08:27):
around assistive technology, andwe generally use or our team and
we advocate for the use of aterm called, or a term we use
technology solutions. Reallywhat differentiates it is that a
lot of the other technologiesthat we see, assistive
technology really came aroundwhen people were customized and
specializing technologies toaddress a certain impairment. So
(08:50):
communication devices,augmentative, and alternative
communication devices, thosewere specifically designed for
people with disabilities to beable to communicate a specific
function to mediate thatspecific impairment. But with
the advancements oftechnologies, we've seen it that
there are so many moretechnologies that integrate,
(09:10):
what are features and solutionsthat allow for mediating
impairments, but so much more.
And so, you know, generally whenwe're talking about more
mainstream versus assistiveassistive is intended to mediate
a specific impairment, andthat's how it's funded. And
that's really critical to theconversation. Because part of
(09:34):
what we do in our technologyfirst and systems change efforts
is looked to modernize thatlanguage, where there's a lot of
when we fund technologies, it'sreally specific to a type of
technology and sometimes we seetechnologies pared down and
stripped of some of the otherfeatures just so they can be
(09:54):
applied to mediate that specificimpairment. Well let's be real
are technologies are We're multidimensional, they're
multifunctional now. And so whenwe're trying to incorporate an
advanced not only policy, bututilization, we're talking about
really what are technologiesthat come off the shelf that
aren't specialized for a certainperson that aren't specialized
(10:17):
for a certain impairment, butcan be used across people that
with universal design, andcognitive accessibility built
in. But just to expand a littleon the reason we use technology
solutions, is there's a couplereason that this is advantageous
not only for practice, but alsofor policy. So first of all,
(10:40):
using technology solutions, itallows us to use it as an
umbrella term. So we can talkabout mainstream technologies,
we can talk about assistivetechnologies, we can talk about,
what are the technologies tocome the future technologies
under an entire umbrella. Byusing the term solutions, we we
(11:00):
focus on goal orientedapproaches, it means that we
really are looking for the rightfit of a technology that matches
a person's person's goals andwhat they're hoping to have that
technology function as, ratherthan a specific thing that's
going to mediate an impairment.
Another reason we'd like to usethat technology solutions,
terminology is because it fitswith our colleagues who are
(11:24):
engineers and designers. This islanguage that they use. This is
language that meets their needs,and also is reasonable when we
start to look at how we do userexperience and user design. The
other reason we use the solutionis for that very reason that we
see so many technologies thatare multifunctional, that we can
(11:45):
see, they don't do like asmartphone, it doesn't do one
thing, it does 1000s of things.
And by not looking at theassistive part where it's a
specific function, if we startto look at solutions, we're
looking at a whole approach ofthat. Another reason it's
valuable is because it doesn'tsay it's just one specific
(12:08):
technology that we're going tofund. It's not a, you know,
specific brand. It's not aspecific type. But it really
encompasses when we saysolution, we're really focusing
on the process for problemsolving, which is really
advantageous for family members,because it means there's a whole
slew of opportunities thattechnologies can serve not just
(12:31):
one specific one that we have amenu that we can choose from.
And so you know, it really iswith this goal, person directed
approach that we like to thinkabout all the technologies as
solutions and use that term,when we're looking at policy,
practice and research assiblings ensuring to make sure
(12:54):
that we have all theopportunities for our brothers
and sisters.
Chris Berstler (12:58):
How can sibs best support our siblings, who
could benefit from improvedaccess to technology solutions.
Shea Tanis (13:06):
So much at this point is about the advocacy and
inclusion. One big thing that weas brothers and sisters can do
is share technologies with ourbrothers and sisters, ensuring
that they have opportunities tosee what we're using to try out
what we're using. So we have anidea and they have some
(13:27):
opportunities, you know, we assiblings naturally have this
affinity for giving our siblingsmore opportunities than others.
And giving them opportunities totry to play with to engage with
technologies, is something thatoftentimes we see the siblings
(13:47):
are the ones who are morewilling to do that than maybe
our parents are, because oftheir discomfort with
technologies. So it's very muchgenerational, we have seen, but
having us as leaders, in termsof providing opportunities for
technology is huge. Also, as wealways do, continuing to
(14:09):
advocate that our siblings bepart of the conversation. That
means with things like manystates are going through digital
equity programs, they havedigital Equity Act programs that
are funded in the states now,making sure that our siblings
are part of those communities,or at least our voices are
heard, so that when these newbroadband accessibility features
(14:34):
and policies are built, they'rebuilt with our siblings in mind.
And you know, frankly, we do wespend a lot of time doing
advocacy with and alongside ourbrothers and sisters, this is
just another opportunity for usto enter a space where it's not
always a natural consideration,to have our community engaged in
(14:57):
that conversation, but yet it isessential Talk to future
supports.
Chris Berstler (15:02):
If a sibling, a sibling who's listening out
there wants to access or getprocess started accessing
technology solutions for theirsim, how would they begin their
journey?
Shea Tanis (15:14):
It's a great question. Um, I think, you know,
we always start with, what isthe sibling what? What does that
sibling with a disability, whattechnology could help them
bridge the gap between theircurrent skill set, and where
they want to achieve something.
So let's say let's say we arelooking to advance employment.
(15:37):
Okay, say they want to get ajob. One place to start is look
at different jobs that can bedone online, look at different
technologies like zoom, that wecan help them learn to help fit
that help them achieve the goal.
(16:00):
Many siblings will say, hey,they want a relationship they
want, they want friends. Theywant, we want to help them get
friends. That's our goal. Sowhat can be our role as
siblings? Well, we can help innot restricting access to
technologies like social media,but helping give opportunities
(16:23):
to scaffold learning. And soagain, it always starts with
what the sibling wants, whatthey're looking for, where we
can help. But I can guaranteeyou almost every I mean, I
there's not a domain of living,that you could give me where we
can't find technology solutionsto aid in advancing supports.
(16:45):
That goes with home that goeswith leisure that goes with
communication. There is so manysolutions out there that can
enhance that can provide newopportunities. That part of the
criticism we always get part ofthe the barriers we hear is
there's just too much. There'stoo much out there to know what
(17:07):
the heck is out there, give me acatalog, I can't tell you how
many projects, national andstate level and local have been
focused on creating technologycatalogs. Okay. The challenge
with this is that technologymoves at such a pace, that the
moment you've created a catalog,everything's been upgraded and
(17:28):
outdated. It is just a problem.
And because there's so muchavailable, so the thing we we
say is start with thetechnologies that you know and
use, I mean, what's familiar toyou, because guess who's gonna
be the largest one of thelargest supports for your
sibling and learning, and alsodealing problem solving new
(17:52):
upgrades of those technologies.
So do the technologies, youknow, find the ones that will
enhance their goals, the thingsthey want out of life? Siblings
are awesome at knowing whattheir said hopes and dreams for
the future, and being able tohelp realize those dreams. And
(18:15):
technology is just one supportto be able to do that.
Chris Berstler (18:19):
In regards to starting that process. Do you
have any advice about how asibling might get funds or how
to fund that search?
Shea Tanis (18:32):
so when we do national research, and we have
some that we've been doing forsome time, we'll be updating our
surveys from state operatedagencies or state DD agencies,
also provider agencies aroundwhat are the barriers
technology? Lo and behold, thenumber one response they always
(18:53):
say is funding. Okay. Ourresearch demonstrates that in
states, there's an average of 12different funding authorities
that are available fortechnology as providers there
that doesn't include grants thatdoesn't include what can be
fundraising, that doesn'tinclude family resources, that
(19:15):
doesn't include donations, thereare so many resources but yet
the challenge has always beenit's too expensive. Well, let's
prioritize. Let's start byprioritizing. First of all, when
you look at the Nationalopportunities for people to use
technology, folks with under Ithink it's $27,000 annually,
(19:38):
prioritize having a phone Okay,so the priority rounding using
technology means that even whenthere are limited resources, the
resources are spent on thosetechnologies because of the
necessity and we have to startconsidering that access. But
practically, what are sometechnology solutions? ones that
(20:00):
and how do we deal with funding?
Well, the Assistive TechnologyAct programs, the A TAP programs
in every state, they're fundedthrough the Assistive Technology
Act, there is one in everystate, it is one of their core
charges to be able to list in astate funding opportunities for
technology. So on their states,they should, because it's a core
(20:23):
function, have opportunities tofunding. Unfortunately, our
field tends to default toMedicaid funding, or to
alternative funding sources fortechnologies. But let's be
honest, the majority of familiesdon't use Medicaid to gain their
own technologies. They look fordeals on Black Friday, and they
(20:47):
look for deals where they canget multiple pieces of equipment
for cheap, right, they look forfamily plans. And so we need to
start, as we do with ourselves,thinking about those as
priorities for our siblings. Butthere are so many resources out
there. Broadband is another onewhere people say, you know,
(21:09):
there's just no funding forbroadband, and there's no
access. Now, I don't deny thatthere are peaks and valleys of
access, that there still has alot of work to be done.
Certainly, the advancements and5g and some of the technologies,
we hope are going to solve thoseproblems over time. But let's
look at what's being funded. Imean, you had $14.2 billion
(21:30):
invested in the affordableconnectivity program for the US.
Okay, that has requirements todo, but it gives people money
for access to broadband, we alsohave $42 billion for the
broadband equity access anddeployment program, that's
(21:50):
grants to states to ensure thatpeople have access to broadband.
So guess what, we need to bepart of that conversation. So
when the access piece comes toour family members, and there is
a lack of resources, we arereally taking advantage of the
resources that are available.
(22:13):
And not just simply saying wedon't have access to there are
definitely solutions forfunding.
Chris Berstler (22:19):
Awesome. This is all great information. Thank you
so much. What barriers stillexist for marginalized
communities who want to accesstechnology solutions?
Shea Tanis (22:31):
Yeah, I think there certainly are, there are
barriers to you know, I don'tthink and our colleagues in tech
companies will tell you, wedon't understand cognitive yet.
We are recognizing that it's anecessity, that we need to start
understanding how to build incognitive features. But we don't
(22:51):
really have the data andinformation yet to demonstrate
impact, to demonstrate whatproducts are best, what features
are best. So I think a lot ofthe barriers are information,
information of resources,research, information on data.
Those are really big barriers,in terms of making sure that we
(23:15):
get to a point where there areproducts that we can use. But
the other barrier that we see.
And it was one of the bigquestions, we asked State
Directors of DD services andproviders across the nation.
Second to resources wasknowledge. And that meant
knowledge about technologiesthat have accessibility features
(23:39):
built in knowledge about how totrain people on technologies,
like what are best practices,and how you train around
technology solutions. Makingsure that providers and our
educators and those working withour brothers and sisters have
some knowledge about technologyand have ideas of how to
(24:03):
integrate technology into theirlives. And so when you know,
once you move past, the initialfunding is my barrier, it
becomes about knowledge. And wehave got to and it's a lot of
what we try to do. But thereneeds to be more programs where
(24:23):
we train people about technologyso that there is opportunity.
And we just don't have enough.
We don't have enough data tovalidate it. And we don't have
enough folks out there who wecall our tech champions. And
oftentimes our tech championsare our brothers and sisters
with disabilities. They are theones who are saying we need
(24:45):
this. We want this. We need yourhelp in getting this. But we
need more of those technologychampions who are willing to
train others about why it'simportant, why it should be
integrating and What resourcesand solutions are available, but
it is hard, because it's alwayschanging because there's so much
(25:08):
innovation, we just need morepeople, we need more people
interested, engaged, and readyto deploy, to be able to support
this kind of innovation andreally movement towards access.
Chris Berstler (25:23):
So for any potential tech champion, who may
be listening out there, what isthe best way for them to try to
get involved in this process?
Shea Tanis (25:32):
Oh, that's a great question. Um, I think, you know,
initially, it's, it's findingyour like minded partners. Um,
so I'm gonna, I'm gonna beselfish. And I'm gonna say,
they're great. You said,there's, you know, 67, you said,
University Centers on excellenceand developmental disabilities,
(25:54):
many of which do have a framingaround some technology access,
that's a great place to start.
There are also folks that areworking in policy. These folks
that are working on digitalequity plans, they often have
open forums where they arelooking for consumer engagement.
They're looking for those users,the user experience, to be able
to integrate and have in thoselistening sessions, that's a
(26:16):
great place for you to go.
Another thing for you to do isif you aren't already in a tech
first state, helps make sureyour state is a tech first
state. And we have 22 statesthat we have recognized as
having initiatives aroundtechnology first, meaning that
(26:37):
they've already started theprocess of engaging in a systems
change effort. And it's, youknow, relatively easy contacting
our team at the state of thestates at KU, we can connect you
with the folks that are in thestate that are working on
technology first. And that's agreat place to start, because
(27:00):
usually there are councils,statewide councils affiliated.
Sometimes there's legislationthat's implied. And many times
those are the folks that aregoing to be able to ingrain
siblings as part of thegrassroots effort.
Chris Berstler (27:14):
What impact has the pandemic had on access to
technology solutions?
Shea Tanis (27:20):
Well, I would say so I've been in this field over a
decade. And the pandemic was thetipping point. So the pandemic
not only demonstrated, what wasthe immense reliance on
technology for information, butit also demonstrated that if you
(27:45):
didn't have access to thatinformation, your life was at
risk, because you didn't knowwhat was happening in terms of
how to stay safe, what practicesto use, where to get your
booster shots, or your where toget treatment, where to get
tests. And so the pandemicreally demonstrated tangibly,
(28:08):
the Reliance our society has ontechnology. And so what it also
tangibly demonstrated is that ifyou didn't have access to that,
it was going to be lifethreatening. And when you look
at the impact of the pandemic,on our community, our brothers
and sisters with significantcognitive disabilities or those
(28:31):
with intellectual disabilities,the data shows that ours was the
second most impacted communitythroughout the pandemic. I think
it was the New York Times whocalled those with disabilities
and the aging communitycommunity, the, the disregarded
and the disposables, thatoccurred from the pandemic. And
(28:55):
so it really demonstrated ourreliance on technology. But so
in turn, the positive side ofthat, is it also really
catalyzed and accelerated? Whatwere new problems to be solved
with technologies. So across thestates, we saw what were called
(29:18):
appendix K waivers, which wereemergency waivers for home and
community based services, manyof which those waivers include
technology solutions to addressthe emergency needs, things like
remote telehealth telehealthservices, things like electronic
signatures to ensure thatpeople's case plans went through
(29:41):
a lot of technologies,medication dispensers, things
that were not traditionally usedin our waiver services, but were
allowable because it was anecessity of the pandemic. Now
that we have seen some of thismovement we have, you know, Oh,
the ARPA funds the Americanrescue act plan programs. And
(30:05):
when we do the research on it,every state except for one has
added technology into theirarpa. It's called ARPA for short
plans for the state. So we arenow investing in a lot of new
pilot programs, a lot of newinnovations across the states,
there's some really excitingthings that we're state seeing
(30:28):
states work on with their ARPAfunding, we're involved with
looking at digital health,wearables in what are accessible
in those. In Oklahoma, we havesome colleagues we work with in
Ohio around broadbandaccessibility, and what are
telehealth services. But that'sjust a couple, almost every
(30:50):
state is engaged in a lot ofnuance in these programs, to be
able to not only get kind ofaccess for people and learn
about that, but also to maintainsome of the services that were
applied during the pandemic,because our brothers and sisters
and our families havedemonstrated that, you know,
(31:10):
it's not a one size fits all, weneed a customized approach to
our services and supports. Andmany of us want hybrid
approaches, that meanstechnology driven and in person.
And so we're seeing a lot ofmovement. And it's really
exciting, because it means wehave to modernize. And we have
to really shift, what has beenour traditional approaches. One
(31:31):
of our concerns, however, isthat we have a whole bunch of
money that is being deployed ina very short period of time, it
has to be deployed originally by2024, now extended to 2025. But
they're upwards of millions ofdollars in states like $42
million. In some states, thechallenge is for us as a
(31:54):
community is not only to getenough great programs out there
to see, but to also captureinformation on impact. So that
while we have these new greatpilot programs, they don't
become the one and done, theybecome something that we have
enough evidence to then sustainand advocate for over time once
this initial and emergencyfunding is completed. So there's
(32:20):
a lot of opportunity right now,a lot of innovation going on.
But it is going to be our job asadvocates, and those who have to
deal with the test of time,right family members, those that
have loved ones, to make surethat we build a system where we
help with a system that allowsfor long term sustainability of
(32:43):
these solutions. Becauseotherwise, we've all been part
of pilots, siblings have beenpart of a million pilots. And
it's great to do the research,but it's not great. When it's a
one and done. We really want tosee some impact measurement,
some outcome measurement, andlong term sustainability for
growth.
Chris Berstler (33:04):
What changes need to be made to ensure access
to technology solutions for thewider disability community?
Shea Tanis (33:12):
Yeah, I think one is policy modernization, we have
really outdated policies, interms of state and access level
where it really was specific tosome of this old technology. And
so we really need to focus onsome policy modernization
approaches, so that we canexpand the access. So that that,
(33:36):
you know, that's one thing. Ithink also ensuring that people
think of technology as anecessity for life, rather than
a luxury. That's it, that's ashift in thinking for many
people. Because technologysolutions end up on the back
(33:59):
burner for folks with cognitivedisabilities, when it's just we
want to make sure they have inhome health care, or nursing,
you know, supports technologyends up being on the backburner
where it can be initialsolutions we start to think of,
and so it takes a little bit ofa change in thinking to allow
(34:21):
people you know, it's almostlike and I, I like it too, when
I learned about job coaching.
This idea that like, you know,once you've learned about
searching for a job for folkswith disabilities, you start to
look at the world in a differentway. You start to go into any
place and you say, Oh, I knowjob will fit that person. I know
a job help. Oh, I know. It's, Isee you have this need. I know
(34:44):
somebody who can do that. Ithink it's a different lens.
That once you start thinkingabout technology solutions as an
integral part of our everydayexperience, you recognize what
an asset acity it becomes foreverything we do. And so I think
we have to as siblings, asfamily members, and sure people
(35:06):
don't forget our siblings, andthink of it as an extra, they
think of it as a necessity. Andthat's, that's a lot of what we
have always done as familymembers has changed other
people's things aroundopportunities, and access, and
doing that with our brothers andsisters. And it's just gonna
take louder voices, it's gonnatake us coming together to say,
(35:30):
No, this is not a luxury, thisis a necessity for their future
quality of life, for theirhappiness for them to be able to
integrate into what is oureveryday experiences. But we
talk about a what are theroutines and rhythms of American
culture rate, and that's, that'swhat we want. And then there's
(35:51):
no mistaking that the naturalroutines and rhythms have to
deal with technology, all youhave to do is sit on a train or
sit on a plane and see everybodywith their faces down. So we, I
think what we need to do is helppush our society further in
understanding the need for thatculture shift. And the other
(36:11):
thing we can do is tell ourstories, tell stories of how
technology has supported ourloved ones. So what are the
experiences that they want tohave? Well, you know, my brother
types every day, he's writing,he's, he's learning to write
with new technology tools, youknow, many of the word programs
(36:33):
that he didn't have access tobefore, he's learning, it's
scaffolding, being able to tellthose stories, to demonstrate
the impact is going to be reallyimportant. And we need to have
more of those,
Chris Berstler (36:48):
what is the best way to get involved or to tell
our story?
Shea Tanis (36:53):
Yeah, to tell your story. Um, you know, there, if
you have a state, that is a techfirst state, they are collecting
those stories on a regularbasis, which is great, because
we see that the other thing is,get on a platform, get on a, you
know, a Facebook post or any ofthose social media and say, Hey,
(37:13):
look at this great innovationthat's working for me, we are
known for our networkingopportunities, right. And the
more we share that internally,the larger it grows, right?
It's, it's that drop in the pondthat just expands and expands,
the rings expand. So we cansimply do it by sharing, you
know, subnets, a great place tostart sharing stories about
(37:36):
that. Our partners there at thesibling Support Project, sharing
stories across these networks,ensuring people say, hey, you
know, oftentimes we findtechnologies we want to use by
talking to our friends. Whatwhat do you use that works for
you? Hey, what kind of phone?
Did you get the news such andsuch phone? What do you like
about it? What do you not likeabout it? That's a great
(37:58):
opportunity for us to networkacross what is our natural
community. And many times we'reable to share those solutions
across family members. And holdyou know, we've had conferences
where families have shared, hey,this is the solution that worked
for us. You might find it usefulhere solutions like it, that you
(38:19):
might find solutions, you know,meetups, all of those provide us
opportunities to spread the wordand share our stories.
Chris Berstler (38:29):
What possible innovations are you personally
excited to see in the future ofthis field?
Shea Tanis (38:37):
You know, the beauty of working in this space, as
there are always newinnovations. And there's always
something new coming out. One ofmy favorite things to do. And
it's very, it's definitely likegeek out academic type thing is
I like to look online at everyyear, the consumer electronics
(38:57):
showcase has, you know, newproducts, new startups, and I go
through it and I look for whatare cool products, right? What
are things that might be useful.
And it's interesting that goodproducts, they do have what is a
category for accessibility. Butoftentimes, the products that I
enjoy the most are the ones thataren't in that disability
(39:17):
specific category, the ones thatare just built well with
universal design that are reallycool. And so there's so many
innovations. It's hard to pickone I will say for a while, I
have been really interested inwhat is haptics, which is the
sense of touch. And thattechnology. There is something
called the tactile internet,which we're waiting for 5g which
(39:41):
is that advanced broadband tocatch up to to us. Essentially,
imagine giving a loved one a hugand then feeling the sensation
of that with a shirt on. Okay,that's a sense of touch. The
reason I really enjoy haptics isbecause I first so much We have
our siblings who have struggledwith different types of
(40:02):
communication sources. It adds anuanced modality for us to do so
much. And again, you know,gestures, movement
communicating, you know, thinkabout our brothers and sisters
who are nonverbal, how much morethey communicate by a gesture
and a function, we can capturethat and communicate that with
(40:24):
new technologies. Right, there'sso the haptics is something I've
been personally really excitedabout. I mean, we see AI
movements, I will say, AIconcerns me, artificial
intelligence, we've done someresearch on ethics of that. It
is really important for us assiblings to be vigilant, it's
(40:45):
important to know that, youknow, we, we don't want to all
over automate, because so muchof what we have advocated for so
long is self direction and selfdetermination. And over
automation, the assumption thatwe need to automate for people's
needs is something that I thinkwe have to be vigilant of. But I
think it also opera, it providesa lot of nuanced opportunities
(41:10):
that we hadn't thought through.
But I, you know, there's just somany technologies that I mean, I
think healthcare wearables aregoing to, if we train and make
them accessible to our siblings,could expand longevity, you
know, and be able to monitorself awareness to increase self
(41:32):
awareness of our of our bodiesand their bodies. That's hugely
important. And then I guess,finally, the one that really
excites me is making sure thatnow we have so many ways of
making information andcommunication accessible, that
it is just opened up doors, tomaking sure that our brothers
(41:56):
and sisters are part of a largercommunity. So connected
communities, allowing for themto to meet with others without
having to physically be therejust expands the potential of
social networks for support thatI think we just never had
before. It's hard to it's hardto say one.
Chris Berstler (42:17):
It all sounds so exciting. Thank you for.
Shea Tanis (42:20):
It's tremendously exciting. And I will say, when
we get involved in theconversations with developers
and engineers, it gets even moreexciting because of just this
generation, and brainstormingand innovation is just crazy.
And we're seeing so many moreopportunities with inclusive
(42:43):
design that that really can makereally amazing products and
solutions.
Chris Berstler (42:50):
Awesome. Shea, thank you so much for sharing
all of this exciting newinformation with everyone. I'm
definitely excited for thefuture. I hope some of our
listeners are as well. Anyresources that che has mentioned
you can find in the descriptionbelow. So thank you so much for
joining us che it's been anabsolute pleasure.
Shea Tanis (43:10):
Thank you so much for having me. And it is always
a pleasure to join the SLN withwhat are all my brothers and
sisters who I've grownrelationships with over time and
we're just so thrilled to seethis type of, you know, podcast
and information going outthrough the SLN so thanks for
having me.
Chris Berstler (43:28):
Thank you. Find resources, tools and information
about the sibling experience onsibling leadership dot for the
sibling Leadership Network is anonprofit, and we rely on
support from our audience. Findthe donation button on our
homepage and contribute to theever growing sibling movement.
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