Hi, my name is Michael Shermas and I'm the liaison for the Council for Community Accessibility. And
Annabel is wandering back there in the corner. She's also a staff for the Council for Community Accessibility
at the City of Bloomington. We're supporting you today. So let me mention a couple of things.
First of all, welcome to get around the table. This year's theme is Disability Life Acts. And obviously
welcome you, but a couple of housekeeping items.
The restrooms are back here. We don't have a formal break for restrooms, but when people are moving
around, getting food, or switching over to a table, you can absolutely go to the restroom at then or
anytime. And the food and drink will be there until probably about a little after 5.30. So feel free
to go up and get more in our mind people at some point.
We have tried to strategically place things so that people can move around in wheelchairs from table
to table. So we'll hopefully figure all that out. And with that, I think I'm going to turn it over to
Leslie to take over from here. All right. Hi, everybody. I'm Leslie Davis, and my mouth is full.
I am the chairperson of the Council for Community Accessibility, and I am delighted to welcome you all
to gather around the table disability life hacks. And in a moment, I'll have our panelists introduce
each other, but a couple of reminders first. So whenever you speak to the group, please first
Say your name so everyone in the room knows who's here. And if you haven't already done so, please introduce
yourselves to everybody else at your table. And when new people join your table, introduce yourselves
to them as well. Okay, so what's going to happen is we will spend the next hour
speaking with our panelists. And before we get to that, I would like to ask them to introduce themselves.
So we will start with our newest member, our newest Bloomington service provider, immediately to my
left. Does this work? You guys can hear me? Excellent. My name is Joseph Stringer.
I am the program manager for the Bloomington Fire Department mobile integrated health program. I am
new to Bloomington as of three weeks ago. I was hired into the program to come down here. So mobile
integrated health in the city of Bloomington has a very, very good reputation. It is provided by community
EMTs that are employed with the fire department and they work on resource
accessibility for patients throughout the city and their mission is to decrease the amount of emergency
care required for patients within the city of Bloomington by getting resources to them before the emergency
happens. We want to lower 911 calls by being able to identify where needs exist and get those needs
to you where you are.
I'm Dana Thompson, and I am a licensed mental health counselor. I'm also the chair of the Dementia Friendly
Bloomington Group and the City of Bloomington Commission on Aging. Hello, my name is Haley Spencer.
I am the owner of HasTech Accessible Solutions. I'm a certified assistive technology professional.
specialize in assistive technology solutions and home modifications for individuals needing our help.
Good evening. My name is Misty Kinzinski. I am the legislative director of the National Federation of
the Blind of Indiana. The National Federation of the Blind has been in existence since 1940. We are
the oldest and largest organization of blind people advocating for ourselves.
in terms of civil rights and other similar areas. My particular job is to ensure that blind users are
represented both at the state and the national level for our legislators.
one intentional mic drops, not unintentional. I'm Karen Williston. I am the president of Mobility Aids
Learning Library. We are a local nonprofit organization that provides mobility aids and medical equipment
to people who need it free of charge. And I also run a website called the Ability Toolbox, which has
lots of disability life hacks on it. And of course, I'm a member of the CCA. It's great to be here tonight.
All right, we have a lot of knowledge gathered here at our front table. And let me explain how things
are going to work from here on out. So we'll do two lightning round questions just to break the ice
before asking each panelist a more specific question. And then afterwards, we'll move to an open question
and answer format if we have time.
If we go on so long that we don't have enough time to do open question and answer up here, we will indeed
have time to do it at our individual tables. All right, so here is the first question I want to pose
to everybody on the panel. And whoever wants to start should feel free to start. We're looking for,
and not everybody has to answer every question, but we're looking for about two minutes
Okay, and so, oh, I'm supposed to pick somebody to start. So, okay. The question is, if you
have a disability, what one life hack do you wish you'd known way earlier, and how does it improve your
quality of life? Karen, I'm gonna ask you that question.
I think the most important thing is having the right mobility aid for your needs, whatever those may
be. When I was a kid, my parents always wanted me in a manual wheelchair, and I couldn't push myself.
It wasn't any good for me. As soon as I got a power wheelchair, I could get around on my own.
I was free. I could be independent.
And so just understanding that looking at what your individual needs are, it's going to be different
for every person. What is going to give you the most independence? What is going to work for your life
situation? And also just not to let ableism, internalized ableism hold you back in what you're actually
using for your mobility. I don't want to use a wheelchair because that's somehow
stigmatized or like I'm giving up, but if that gives you the ability to go out and do things and have
a good life, then that's the right mobility aid for you. And of course, also different mobility aids
at different times, depending on your needs and if you have a fluctuating condition. I couldn't agree
more. All right. Let's see. For somebody that doesn't
identify on our panel as having a disability that might require home modifications. What is one inaccessible
aspect of your home that you'd need to change quickly if you had an injury or a new disability? And
how would you go about changing it? How about Dana?
Absolutely. Actually, we've been living in our house for about 13 years now. And I literally said to
my husband out loud when we walked in to decide if we wanted to buy it, if I had to live on one level
of this house one day, could I do it? And the answer was, yeah, but we'd have to do a little bit of
work. I think for me, the one thing that comes to mind, well, two things come to mind. One is that our
laundry is downstairs in the basement. And so that would need to come up.
And the other thing is that our back stairs, which is the door we typically come in, used to be exterior
stairs, and they were really rough, uneven stone steps, and that would be very problematic. So it would
take some big work. Luckily, I know pretty cool people in town, like Lauren Cowan from HY's Design,
that know how to handle those things, and I'm fortunate enough to be able to afford that when that's needed.
But those are the primary things that come to my mind, is that I would just be limiting the space that
I use within my house, and it would take fairly significant modifications. I'm looking knowingly down
at my friend Karen, and over at my friend Debra, because this is a moment where I'll let you know that
we are trying to lobby for the new
unified development ordinance to pay more attention to building things without steps if there's no obvious
reason why they're needed. So then your renovation would be a lot cheaper. Okay. All right. So would
anybody else like to answer that question?
Haley or Misty or Joseph or either question. So my wife and I purchased our home in 2021. It is a two
story home with an unfinished basement. And the first thing that I did to modify that home was the stairs
that go to the second story
a half banister and then it turns into a wall as it goes up. And the first thing I did was take out
the half banister entirely. You think, well doesn't that get rid of the hand hold that you might need
coming down the stairs? And there was a hand hold on the other side of the stairs, but the reason I
did it was as soon as I walked in the house as a paramedic, I looked at it and went, there's no way
any of the equipment from an ambulance can get up the stairs because of the tight turn it would take.
So by taking out the banister, now you can get the equipment up the stairs if there's an emergency upstairs.
So I was already kind of looking at it, but I looked at it from an emergency standpoint and not an everyday
livability standpoint. Now, doing the work that I do now, every single rug on our hardwood floors is
taped down underneath. Every single bump or anything else in the house that anybody could stub a toe
on or have issues
coming through has already been removed because it's something, once you see it, that you recognize
that it's a problem. And so it's thinking through the problems before they happen. Great advice. It's
funny how the needs of emergency responders and the needs of residents can be, in this odd way, so much
in conflict. Yeah.
I can move on to the next question, which is, what's the first piece of advice you share to help another
person transition through the challenges of a new or changing disability? And I would love to hear first
from Haley and then from Misty on this. I think in my experience, transitioning with
a new disability has been particularly difficult for a lot of my clients and accepting that now they
have to do something maybe in a different way. And it doesn't have to completely change their process,
it might change their process, but I think change is hard for everybody and so trying to get them from
where they were to know where they are and what they want to accomplish is usually my job. So what is
it that your goal is in mind that you're trying to do? And a lot of folks want to say, well, this is
how I used to do it. This is how I'm used to doing it. And so for me, trying to get them to transition
slowly but understand that it sometimes takes time, our brains are not
hardwired to accept change very easily. And so typically we give it two, three weeks of consistent use
and making sure that we're paying attention to some of the key factors, which are if you're wanting
to accomplish it, is it causing you pain? Is it causing you excess time?
Is it causing you excess energy? Then we need to probably have some sort of intervention to be able
to help you to reach your goals in that. Right, okay, so I think my one piece of advice, if I have to
give one piece of advice to anyone who is newly disabled, is first and foremost, as soon as you can,
try and find other people with your disability or a similar disability to become role models for you.
I mean, there are certainly plenty of well-adjusted, fulfilled disabled folks living our lives,
you know, realizing that our disability is not the kind of tragedy that the wider society portrays it
as. And you know what all of this ableism we find in media and other aspects of society, a lot of times
when someone
develops a new disability, they think their life is over. I mean, certainly with blindness, I would
say among most other disabilities especially, they're like, how am I gonna do this? And if they can
get exposure to other blind people, successful blind people, fulfilled blind people, and partner up
with them as role models and mentors, as soon as that disability, as soon as that diagnosis comes to
be, I think that that's going to do
That's going to move mountains for them, and it's going to allow them to realize that they can continue
to live the lives they want. We do have that exact expression within the National Federation of the
Blind. You can live the life you want. Blindness is not what holds you back. So again, yeah, I think
as it was to summarize, try to find other people with your disability that are still living their lives
and living good lives. I love it. Thank you so much. That's great.
All right, now I'm gonna ask you some very direct questions. And let's start with Dana. Dana, what are
the best mindset and lifestyle changes to help a senior or someone with dementia age in place successfully,
in your opinion? That is a big question.
One of the primary things that I talk with my clients about is that there is this belief that it's kind
of all or nothing when you get diagnosed with dementia, that it's either at home and we're just taking
this all on ourselves or I have to live in a nursing home. And there is a lot of support in between,
very similar to what Misty was saying, a diagnosis like this doesn't mean giving up your life.
People can live for 20 years with dementia, and that's a long time to just say, well, I'm going to sit
back and wait until this is over. So getting out of that stigmatized mindset, getting familiar with
what is available in our community, and seeing that, yes, you may have to change the way that you do
things, but that doesn't mean you have to give up what you're doing. It's so important. I think another
piece of that puzzle that I find particularly important is
creating something that is purposeful and meaningful for each person. There is a lot of talk about let's
make activities for people living with dementia, but it's not enough to just fill our time. Just as
the rest of us wouldn't be happy with just filling our time, we want to do something that matters, something
that engages us with community and with the people that we love.
And the people who find ways to do that typically become the people that live the best with this. I
wanna echo another thing that Misty said too. The first thing I always tell people is I'm gonna introduce
you to somebody who's living well with this. Because it's really important to see that that is possible
and not just hearing from me. Thank you so much. That was great and this is a perfect time
for a shout out for the Council for Community Accessibility because if you don't already join our meetings,
I guarantee that you will find community there and connections there. Thank you so much. Let's go to
Karen. Karen, what were your two favorite success stories of mall clients transitioning to a new mobility
aid that improved their quality of life?
We had this wonderful gentleman, I'll call him Red, and he's a very happy-go-like guy, and he's always
all around town, but he was having trouble getting around, and he needed a power wheelchair. We gave
him a power wheelchair, and he did great with it, but he was hoping to get a scooter, so eventually
we were able to train him for a scooter, and he just was able to enjoy life so much, and he became more
motivated to try to get
a chair for himself through Medicare and Medicaid. And eventually, he was able to do that. And so I
think just getting him out there. And also, he's just such a wonderful person. He always just takes
such great care of his mobility aids. Whenever he brought stuff in, it'd be perfectly clean, everything
he returned to us in great condition. Just a wonderful guy. So that's, I think, a really good one of
somebody that we've helped.
We've had folks come even from other parts of the state to get equipment sometimes because they can't
find it where they are. Helped a little boy and his family who came down, could not find the right wheelchair
for him, and we had one. Gosh, there's so many stories. We don't even always know the impact we have,
but sometimes I'll just be scrolling through a Facebook group and someone saying, hey, where can I get a cane?
there'll be two or three people commenting and saying, hey, I got one from mall and it's really helped
me. So yeah, I just think that it really makes a difference to have folks getting the equipment they
need and getting back out there and enjoying life. Those are some great examples. I was thinking also,
we so often help people at Mobility and Slimming Library who need something like a wheelchair.
But one of the other things that we do that I love is that we can provide equipment short term. So I
remember somebody whose mother in her 80s was coming to visit and they contacted mall and said, well,
can we get a transport wheelchair and maybe a walker, maybe not, but also a shower bench just for this
long weekend.
And then I thought, those of us who travel and need mobility aids could have such a thing in every place
we go. That would be amazing. Yes, we get a lot of folks around the holidays and around IE graduation
who need equipment just temporarily. And we help out with that as much as we can, absolutely. But yeah,
it's the difference between that person saying, I can visit you and I can't.
All right, let's hear from Joseph. What are one or two of the most effective adaptations you've seen,
get back here. I thought it was a skate rink rolling away in this chair. Okay, what are one or two of
the most effective adaptations you've seen that are inexpensive and accessible to renters to help them
stay where they're living?
That's a big piece of it is for renters, the statistics I pulled today showed that less than 6% of people
identifying as having a disability report being homebound, which means there's 94% of people that identify
with having a disability that need to be able to get into and out of their homes reliably. And so there
are some things that you can do. It's not always easy to widen the doorway.
when you're trying to get into an apartment. But for between five to $20, you can actually get expandable
hinges. So the hinge changes when it opens and adds an additional two inches of entry space as you're
trying to navigate a walker or a cane or a chair through the doorway. Keyless locks. So there are lock
adapters that can go onto deadbolts on the back that are Bluetooth
accessible that you can use them and it will turn the deadbolt for you with Bluetooth access. When you
look for things like keyless locks, also look for things like handles instead of knobs. And those are
cheap, easy ways that people who have apartments can request better accessibility for their apartment
that are not difficult for a maintenance person to come in and install and set up for the home.
And because so many of my patients that I work with, we worry about falls. Some of the things that I
look for in a home when I go through the home is, I've already mentioned, having rugs that are secure,
things along those lines, but some things that people don't think about. If you have a hardline telephone
in the house, is there a hardline telephone on the floor so that if you fall, you can get to it to call
for help? If you don't have a hardline telephone and all you have are
cell phones, plug in a Bluetooth speaker that can activate your Siri or your voice adapter and keep
that plugged in on the floor so that you can turn it on and use the Bluetooth through the speaker to
make the phone call for you. Those are very simple things that you don't think about them until you
need it. So that's always a recommendation I make for a lot of my patients. If there's a risk for a
fall on the home,
Make sure that you have a way to call someone for help from the floor. That is great advice. It's so
interesting that you talk about something being on the floor level. I do a lot of work in other countries
where having an emergency pull cord
in any accessible bathroom, any accessible hotel room is the standard. And people are always tying them
up because they get in the way. And that's a big annoyance. But the whole point is, if you're on the
ground, you need to be able to reach something. All right, let's go to Misty.
Can you tell us what are the top three tools or tech solutions you would recommend to someone who's
in the process of losing vision? Right. So I'm going to recommend for you guys today things
that theoretically anyone can get. It's not special disability technology. You don't have to go searching
high and low to try to find some specialized piece of equipment or tool. The first one I'm going to
recommend is your simple iPhone.
Well, androids are pretty close as well as far as what they can offer. But for my example, I'll use
the iPhone. So why an iPhone? Well, first of all, an iPhone has a built-in screen reader. So anyone
who gets an iPhone has that screen reader, which basically, for those who aren't familiar, it will read
the screen aloud to someone who can't see it. So every single iPhone has that. Second, instead of buying
a bunch of expensive pieces of blindness-related standalone technology,
you can get apps that will do the exact same kinds of things for free or very cheaply. So it becomes
a multipurpose accessibility device. And I'll mention a couple of these apps now. They're both, well,
one is paid, one is a for-profit company, one is free. The free one is called Be My Eyes. Some of you
may have heard of it on the news. It received some coverage a number of months ago now, I think. Basically
what this is is that a sighted person on their phone can look through a blind person's
camera and help the blind person with whatever they need. If they need a pair of eyes for something,
they can describe it to them. That's a free app. If you're blind, you can download it. Say I'm blind.
If you're sighted, download it, and you can become a volunteer. Aira, A-I-R-A, is the second app.
It is paid. It is for profit, but the advantage of that is it has a lot of other bells and whistles.
They can tap right into your computer, for instance, and assist you with things. The agents can, or
some of them are specialized in orientation mobility, basically helping a blind person navigate.
can get around. And again, you can be a blind person and download it. You can sign up. It's a totally
remote job if folks are interested in actually signing up to be an agent. Second overall, though, piece
of technology I would recommend are the Meta smart glasses. Meta has taken notice recently that a lot
of us blind folk have been using it. And they have added a lot of accessibility features. They are now
giving away through the VA and other sources.
free mediglasses to blinded veterans. You don't have to have been blinded in combat. You can be a veteran,
and if you're blind, you can get those free mediglasses. There's been a lot of talk about AI and the
negative impacts of it, but I really think that disabled people like us should be more part
of the conversation because it has also done wonders for especially the blind community and other disability
communities. You can use AI, for instance, again, to tell you what's in front of you. You can also use
the mediglasses with apps like IRB My Eyes.
You can have an agent there on the other end telling you, again, what they're seeing through the glasses.
Third piece of technology would be, well, a simple Bluetooth keyboard. One of the first things that
a blind person notices about the iPhone or other phones is that darn old on-screen keyboard. It takes
forever to type on it, and it's very, very slow. It's hard to see if you have low vision in many instances.
Just connecting up a little Bluetooth keyboard to your phone
It's tactile, you know, it'll make you type a lot more quickly. So yeah, those are my three things.
Those are great. Missy, can you explain how the meta glasses work for the user? Sure. So the AI basically,
all you do once you get them set up is you put them on your face, and then all you have to do is, I'm
not going to say the full phrase because it might set them off if they're in here. You can say, hey,
META, hey, META, and you hear a little beep.
And then you can just basically ask it, like, look and tell me what you see in front of me, or look
and tell me what I'm holding. You can identify maybe a shirt, color of a shirt, what's on a t-shirt,
what's on a can of vegetables, like, what is this jug of stuff that I have in my refrigerator that I
can't really see the label on. So you can get pretty detailed descriptions of a room that's around you.
And so, yeah, better AI is good for that. It's obviously like any AI, it's going to hallucinate sometimes,
it's not going to be perfect. But it's definitely, it's been helpful to me, it's been helpful to a lot
of us. And as I say, you can use it like I would be my eyes, and so you can get a live person if you
need to to confirm as well. Basically, you just, there's a bit of a,
challenge to get those apps hooked up right now because they're not part of the native ecosystem for
Meta yet. But it can certainly be done at this point. And you can basically just open your phone, open
one of those apps, Be My Eyes Ira, and then that app will connect to your camera on your Meta glasses.
And then you can have the live human agent see through those and help you with whatever you need.
Very cool. Thank you. All right. And Haley.
What's one of the most successful home modifications you have suggested for a client and why was it
so successful? So I think the the one I'm going to talk about one that I think would have been the most
successful and unfortunately the funding source wouldn't allow us to complete it and then I'm going
to give you a rundown on
a modification that was ground up built for a second. So one of the better modifications that I recommended
was actually putting an elevator into a home because there wasn't access, the way the home was structured,
there wasn't access to be able to get to the stairs,
in a way that was going to work for the wheelchair user. So that one would have been the most successful
I think because otherwise the home needed very little modifications because whenever it was built they
had paid attention to most things except for the stairwell. The most successful
ground up build. I actually worked with Habitat for Humanity to design a ground up build home that was
accessible. So we did I think 60 inch hallway that was lined up with the front door. The flooring was
actually the same polished concrete that we're on. So the breakdown of polished concrete over time, there's
always a few factors to consider when you're talking about accessibility and expense and what makes
the most sense. And so the longevity of concrete, polished concrete over time is great for navigating
using a wheelchair. And then we made sure to do the simple things too. So no quarter round. Quarter
rounds around the baseboards,
it takes away about an inch, right, off of the sides of your hallway. And a lot of times it's just a
snack hazard for wheelchairs whenever they're going down the hallway. We also did pocket doors throughout
the entire build. So rather than going to a barn door, which then cuts off
some room in our hallway, which barn doors are, a sliding barn door is a great accessibility option
for modifications afterwards, but we were doing a ground up build. We completely designed this home.
So pocket doors all around, and then we were able to achieve the five foot turn radius in every space,
especially because we've got that nice big hallway. We did a double pocket door
on the bedroom so that the five foot turn radius, if we opened both of those doors, we had a great turn
radius. So I think that that was probably the most successful modification that I could have made was
just to build a completely custom home. Well, following up on that, can you tell us what would have
to be in the bones of a house
in order to consider putting in a residential elevator? Where might it work that we're not? Yeah, so
typically, and this isn't going to be necessarily my niche area, right? I can tell you where some of
the better spots might be, but we do have to have a contractor come in to take a look at things. Larger closets.
that have open spaces above them sometimes can be modified into an elevator shaft. The place where we
actually found was a double fireplace. So the fireplace was in the upstairs and the downstairs. And
so it would have just been an external add-on for those spaces. And the framing was already there because
of the fireplace, the double fireplace.
I think larger closets would probably be a little bit more common for where it's going to have to be
in the upstairs versus a downstairs space. While I've got you on the subject or anybody else who has
experience with this, a lot of people think, oh, I've got however many steps and the ramp I'll have
to build to make those steps, you know, bridgeable.
is going to be so long and I don't have room for it. Does anybody have experience with sort of either
indoor or outdoor platform lifts? People must think, oh, they're so expensive, I couldn't possibly.
But I'm not so sure that's true. Yeah, I think platform lifts are becoming much more common. I think
that I'm not sure what their top end range is, because I know that there is a top end range
somewhere for platform lifts and so whenever like the elevator situation that I was looking at was going
to be like upwards of 35 feet of ramping which is a lot of feet of ramping and so a lift may have been
appropriate but we actually have turns and like several items for the front door access and then
I think that they're actually becoming much more common for garage access. So pulling into a garage,
and usually a garage has no more than three steps. So platforming there would probably be a great solution.
Wonderful.
on a couple of platform lifts that actually go on the stairs, almost like the chair lifts, but they
have a platform for a wheelchair. I don't know anything about them beyond that I've been wanting on
them, and they held my chair. And then, of course, those exterior ones. I've also seen them added to
the exterior of a building, like adding those, especially the ones that do a single floor. I've seen
those added to the outside of the buildings before, so that's maybe another option for some folks.
Yeah, unfortunately, it's definitely one of those things where when you're doing new construction, it's
just so much easier. And the cost is minimal. People think, oh, to build a home to be accessible is
going to be really expensive. Actually, can I ask Haley a question? How much more do you think it costs
to build that house with the accessibility features than if it had been built just regular?
So the home that we designed from the ground up, they took a three bedroom and paired it down to a two
bedroom. So really it was just an additional bedroom sizing, but the additions for accessibility were,
I think, under $20,000. Whereas you have modifications that we're doing. So an elevator, for instance,
is going to be very expensive.
But some modifications happening around the states that vocational rehabilitation is helping do might
be upwards of 30, 50, sometimes in the $100,000 range. Just because we're a lot of times taking every
single doorway and expanding it. We're taking rooms and expanding them. We're taking hallways and expanding
them. We're taking a bathroom and having to modify it. So many times,
The homes that are being modified are having to have a total overhaul. And I would guess that you're
saving at least 50%, if not 75% by doing a ground-up build. I think ground-up build too is a great option
if you can find the land too. That's always the kicker, right?
But whenever we looked at home sites, we actually looked for the flattest areas possible, but you also
get to customize then, is it in an area that's going to be accessible to a bus route, right? Does it
have sidewalks? Which that's not something that whenever you get a funding source to come in to help
with the whole modification, it can't necessarily control those factors either.
Fantastic, thank you. All right, before I open it up to questions from the audience, does anybody here
on the panel have anything they'd love to add to any one of these things or something you feel like
you just really want to tell us?
I'll just say I appreciate being asked to be on this panel because a lot of times we think of people
with brain change as being separate from the disability conversation. And I think even some people living
with dementia wouldn't consider themselves as having a disability, but there is so much overlap. And
some of the needs are so similar. But I think what this panel has done a really great job of is showing
us that there can be very cheap
and easy solutions to things all the way up to building an entire home, right? One of the places where
I see a lot of overlap for my clients is that many people don't realize that when you are living with
dementia, as the disease progresses, there is a lot of visual processing loss.
So not that your eyes are changing, but that your brain's ability to process that information changes
greatly. And so a lot of the things that you would recommend potentially for people with low vision
because of their physical eye and those pathways would work for these folks too. So I'm trying to listen
for good solutions as well. Thank you. I think that's a great example of the curb cut effect.
Something designed for one group of people winds up being helpful to so many other groups of people.
So I think, I didn't want to be the next voice after my own voice. So I think my specialty being assistive
technology, I do home modification work, but assistive technology ranges from very, very low tech. We
call it low tech, no tech.
all the way to high tech. And low tech solutions are really great options for folks who have either
brain injuries or dementia. I have a lot of folks who have learning disabilities and that doesn't mean
that they can't go to college, right? So there's all kinds of solutions for all kinds of people and
it's really connecting with folks who are in a position like I am that know some of those solutions
that can be a game changer for those folks. So really simple solution, just as an example, have we all
used a hotel key card? Those hotel key cards and how they work and whenever you touch them to your door,
that same technology is in your phone. So if you've gone to a hotel now, you can get a key card to your
phone, but that can be translated to lots of different operations on your phone and you can use those
old hotel key cards as prompts for people with a variety of disabilities. So I've got some folks who
have autism or traumatic brain injuries
who can tap their phone and it starts a video of the process that they need to be completing. They can
tap their phone and it will start an alarm that will be set for 10 minutes, right? So this is how long
you have to be able to complete this task. So really simple things if somebody has fine motor difficulties. I used a
Anybody seen a tomato gun? I know that sounds really weird. It's a lighting gun. It's a what gun? I
call it a tomato gun. It's for tomato plants, and it looks like a big staple gun. It's like 20 bucks,
but it puts a twist tie around a trash bag. People use it to put the twist tie around the vine and their stage.
I use it for people who don't have fine motor skills and can't tie a trash bag. So they can. So lots
of really unique solutions. So I think the overall message would be to just start asking questions.
There's got to be something out there. It's not if you can do it, it's how can we do it. And that's
usually the mindset that I go into things with. It's not if, it's how.
Yeah, kind of playing off of what Haley was saying, technology is great. Again, even an expensive technology
is wonderful. Metaglasses can do what they do now, et cetera. But certainly for the blind community,
the low tech is also essential to maintain. Knowing how to do things in a low tech way, putting a rubber
band on the conditioner so you can distinguish it from the shampoo bottle, it feels the same way. Your
technology may go out at some point.
Right, so you've got to have some kind of backup that way that you're doing orientation mobility. Yeah,
there's GPS. GPS specifically designed for blind people, in fact. Apps that do that. But what if that
goes out? You've got to have your orientation mobility skills still honed. You've got to know how to
listen for traffic. You've got to know how to find things without that technology. And quite frankly,
the low tech solutions can sometimes be quicker. Let's say you've got something from the store. You
want to scan and figure out what's what. You can do that scan initially with that technology, but then
put a Braille label on it so you can find it a lot more quickly the next time. Instead of having to
pull out your phone and rescan it all over again. High tech's great, but low tech sometimes can be even
better and sometimes can save you. Awesome. All right, can we pass the microphone this way? And Joseph.
I just had one take on an answer that Missy had given earlier on finding other people.
That was actually a note that I had written down for someone who's just been told that they're going
to have to change the way they approach the world around them. And the answer that I had jotted down
in my notes was, don't try to do it alone. That's usually the first instinct a lot of people have, is
that they will go through their stages of grief and they will retreat and try to process everything
on their own.
Have a team, have a plan, and lead your team so that they know your plan. Make sure that your plan is
centered on you as a person and not you as your disability. And then in communicating your plan, make
sure that the other decision makers around you share the decision making process with you. That's very
difficult a lot of times for clinicians and healthcare workers.
We want to do what we think is best for you, but also it's best that we step back sometimes and say,
what do you want most? And make sure that the decision is shared. There are a couple of things and tools
that I brought up here, examples of how to make plans, how to make sure that someone knows when to identify
that your baseline has changed or that you're not working at your baseline. So what a good day for me
looks like.
There's something that we have here in Bloomington that if you're not aware of, I highly recommend called
Smart 9-1-1. So go to Smart 9-1-1. It lets you put in any conditions that you have. It lets you put
in who's treating those conditions, who your emergency contacts are. You could be in San Francisco and
have an emergency and if they're running Smart 9-1-1, it will tell the dispatch all of the information
you put in Smart 9-1-1 so they can reach out to get your plan.
So put your plan in Smart911. And then the last thing, I only have a couple of examples of it. My NIH
team is ordering more of these for people. But if you want a file of life, it is magnetic. It goes on
your refrigerator. It has everything that would go in Smart911. But when emergency providers show up
at your home, if you have an emergency, they can just take this with them as they go. And it has all
of the medications, all of your conditions, all of your physicians, your emergency contacts.
everything right here in one file that you can pick up and go. The number of times as a 911 paramedic
that I wished my patient, my ambulance had something like this is countless. Because if not, I'm relying
on someone that may not be a part of the team, that was a bystander, that doesn't know all of the particulars
of the best way to treat you. And that's when mistakes get made sometimes. So that was my piece. My
stepmother's independent living
or three-stage community place makes everybody put one of those inside the cabinet door under the sink.
It's a requirement. You can't live there unless you've done that. It's very cool. All right, questions
from the audience. Anything you think people on this panel might have some things to say about? Deborah,
I saw your hand first.
And we're going to make sure that you announce your name for the people all in the room, too,
as you go. Thank you. This is Deborah Mayerson. I'm going to follow up on what Joseph was talking about
just with a more specific question. I'm thinking that you might answer it, but certainly others have
answered as well, which is focusing on people with intellectual and developmental disabilities. What
kind of safety measures would you recommend in terms of households so that
that can be addressed in an emergency. I love the file on life, but I figure there's probably more that
we get to know about. Thank you. There are more. The thing that popped into my head immediately, if
you are the caregiver of somebody who has been diagnosed with an intellectual disability, I've seen
a lot of parents that will reach for 911
very rapidly because they're working through the process of dealing with a child with autism is understanding
baselines, knowing the baseline has changed, and be willing to work with your doctor to update the baseline
over time. But within the home, something as simple as color choices inside of a home can overstimulate
somebody with an intellectual disability. They process the colors differently, and that can create problems.
So that's something to think about as you work through visiting someone else's home and understanding
that my child might process the colors within this home differently than other children do. So that's
the first thing that I could think of. I would add to that too that we are very fortunate in Bloomington
to have community resource officers at our police department. For people living with dementia, this
has been a really great
addition in our community because the process of having a police presence arrive can be very traumatic
and escalating if you are not sure what's happening and are already in distress. These community resource
officers have a completely different approach and I have watched them to skillfully deescalate people
living with dementia and make sure that they got where they were going safely.
I would familiarize yourself with that service if you don't already know about it and know that it's
an option rather than going straight to 911. Even though their intentions are good and they have a certain
great skill set, it's maybe not the one that would fit in that moment. All right, Casey. Hi, Casey Garino.
I was just going to say to expound on something that Joseph said.
If you do decide to do the file of life, don't just have one at home. Have one in your bag when you're
away from home, because many of us with disabilities, we have emergencies away from home, and we may
be taken care of by strangers that don't know us. And so having that allows EMTs or whoever's taking
care of you to whip that out real quick, and they know everything about you. That's great advice. And
there's also, I'm sure one of our panelists knows about this,
There's a feature on the iPhone where you can put your medical information. Can anybody expand upon
what that is? Yeah, so I believe you can find it under your health app. Actually, I haven't accessed
it in a while, but I believe it's under there. I know there's a lot under there. So yeah, you can enter
your basic information. For instance, what height, weight, I believe medications, blood type, and many,
many other
And basically what happens is I believe if a first responder opens your phone and I think you can tap
on, I think it's emergency again, it's been a while, I apologize. Emergency and then I can see all that
information right on your lock screen. Now I will provide a bit of precaution for people who use screen
readers like I do. When you use a screen reader on the iPhone, it does change the gestures and the way
one interacts.
with the phone, and I don't know if emergency responders, perhaps someone else can speak to that, have
been trained to be able to access that same information with a screen reader running. So that is one
precaution. But in general, I think it's really a great thing to have. It's obviously, emergency responders
can definitely find that information a lot more quickly, perhaps a week later. Can someone else speak to that?
So I now have a new class that we're gonna give to all of the medical emergency responders. No, that's
a fantastic point because no, we don't get special training in identifying screen readers and how to
change them back to look for your medical information. The one thing I will say, if you carry
your information on you, when 911 gets called and it is a real emergency, it's stressful for everyone.
Not just the patient, not just the bystander, but for me too.
We just get trained on how to process it differently. Find a way to identify something, for me, that
tells me that your stuff is on you. I've already talked to my NIH team about getting rubber bracelets
that say, I have a file of life, or something like that. Something as simple as, check my iPhone. With
a medical symbol on it. Because as a paramedic, I will look for that.
But if I don't see anything, a lot of times it's during an emergency to go through someone's bags. But
if I know that there's valuable information there, I can tell one of my partners they have a wrist bracelet
or a medical bracelet that says they have information. Go find it, please. So you can actually get wrist
bracelets that have a QR code insertion. And you can make a QR code and put it in your Google Drive.
and have your medical information accessible that way, scannable that way. I typically, whenever I have
someone who medical needs are higher, they will put that same QR code on the back of their phone, sometimes
in their wallet, wherever they think is going to be most accessible to folks. I've even had people
wear them on like expandable lanyards on their pockets or lanyards around their necks just because they,
this one in particular person had so many allergies that it was probably going to be needed at some
point. Okay. Great advice. All right, we have another question. Carl Crawford. This is a totally different
kind of question.
I've worked with Area 10 as a volunteer, kind of with money management for about 20 years. And for quite
a while, I helped an individual. She's in Section 8 housing, has emotional and all sorts of issues,
but maybe not physical issues. And she has a car, and many times it breaks down. And she works at the
library, I think about 30 hours a week over in Ellisville, but she lives in Bloomington.
Is there anything she can do to get a ride back and forth occasionally? We thought the same thing. I
was going to say transportation for accessibility is kind of a nightmare.
Okay, so again, there have been some recent issues. I know we discussed them at CCA during our last
meeting with some issues with the rural transit. I don't know if anyone's heard of rural transit, right?
But basically, as far as I know, you can still get a ride from the Bloomington area to the Ellis, well,
I'm sorry, can you get, can you take that back? You can't go out of Bloomington, can you? Well, yeah.
Ellisville is now considered an urban area, which is bananas.
So funding for rural transit no longer covers Bellensville. So that was true until very, very recently.
And it's kind of in transition because BT Access is supposed to be providing that service, but I don't
think it's transitioned yet. Does anybody know that piece of the puzzle? Because I won't promise that
part. Are there BT Access people here? Do you know?
Has BT Access started providing coverage for Ellen's films yet? Not yet. OK. But is it in the works,
as far as you know? They are receiving funding for it, so they have to do it. Oh, excellent. I think
it's a matter of time. So I just don't think they ever have.
When rural, they never have, we talked about this in commission on aging all the time, because transportation
is like the regular refrain. They never have provided it because rural transit was already providing
it. So they did other areas of coverage, but now that it's considered a non-rural area, rural transit
can no longer receive funding for that. So BT Access is supposed to pick up the service that they had
initially planned to do,
I know that Area 10 is working with BT Access on that, but I don't know where it is in that process.
I hope that they pick it up, but I will say that if you want to talk about an accessibility issue for
people living with dementia, that BT Access application is a nightmare. It's 16 pages, and I've been
told that that is the shortened version that they got down to.
And if you have cognitive issues and have trouble following and remembering, it takes a lot of wherewithal,
even in the early stages, to actually fill out and access and then plan those trips. Your typical emissive
emotion confusion. Fair. I stole your mic. You can keep it. My name is Josh Wolfe. I have heard in my
work that rural transit is
going to continue running until the end of the calendar year. So there's a little bit of breathing room
there. And BT has expanded out of the city on the south side. They go to the Southwest Library now.
Thank you. Good to know. And I do know that rural transit will still be operational, just not in that
area. So you can take rural transit from here to Lawrence County or from here to Morgan County, things
like that.
This is very, very hearsay. Oh, my name is Tori. I know someone who works with PHA, who said that he
does not have a hard timeline for it, but estimated that it would take about three to four years to
get BT access out to Elksville. So it's like a two-year gap. It is going, and rural transit was not
reliable beforehand. So again, hearsay, he does not work with BT Transit, but he's
Just from his discussions with his coworkers, he said it's going to take a while. We'll definitely bring
this up at the next CCA meeting when we have a low-tem transit who comes every month. So we'll have
somebody there who can speak to this more directly. Great. More questions?
holding it backwards, right? This is Deborah again. I'm gonna ask one systemic question to the extent
that you may have insights into it. Working with state agencies, just because some of the hacks, many
of the hacks which are great are more kind of adaptive, right, for specific physical environments. And
I'm just opening up a question, because I'm again in a position where I need to deal with state agencies and their
vendors on a regular basis. And it can be rocky. And I'm just interested in your insights, perspectives
on hacks on dealing with agencies and their vendors. Press zero in the phone tree. That's all I got.
So in doing assistive technology and home modifications, I work with vocational rehabilitation a lot.
So vocational rehabilitation is a state and federally funded agency that the goal is to provide assistance
to help folks get into a vocation, back to work, or help them to be able to continue in their work with
possibly a newly acquired disability.
I would say that anybody who goes in the door to vocational rehabilitation should be able to access
services as long as they meet the criteria, which is they have a disability and they have a work goal,
and vocational rehabilitation has at least one service that they can offer them. From there, they should
walk you through the process. But if you're looking for folks who may not have a job goal in mind, then there's
not a ton of funding out there for them. But if they do have a job goal in mind, voc rehab is a really
great option because then they can run into vendors like me. Or they'll get lists upon lists of different
vendors for different activities. So assistive technology, there's a list. There's a list for job coaching.
There's a list for home modifications. There's a list for drivers training. And then I would say that
Talking to the vendors who are working within the agency can also be really helpful because if you are
in the system and needing some questions answered, then I can kind of talk to the vocational rehabilitation
counselor for you to be able to help with that process because I speak their language.
Since I did so well on my first question, I will drag in. Do you know a place, you know, she doesn't
have much money, obviously, being in Section 8 housing, et cetera. She does work at the library, so
she doesn't really qualify for much else, even though it's probably 30 hours a week, $15 an hour, something
like that. So her money goes fast with rent and everything else. She has a car that always seems to
break down, and it costs a lot of money to replace a 20-year-old car.
Are there places where she could put her name in and might get her a car in the future with not a lot
of money? I don't necessarily know about a place that a cheap car can be acquired. However,
If she is in need of car repair, Hoosier Hills Career Center has a program in which students are learning
to work on cars, and they do take people's cars and repair them for relatively cheap, because it's being
used as a teaching tool. So that is one thing I think in this community we don't know enough about.
Great suggestion. Haley said she thinks Ivy Tech, too. I think Ivy Tech.
Any last question here? Jamie, in your experience, just anyone, jobs for people with disabilities in
general, is there like a job that not just a working McDonald's or like a low-end job, but a high-rate job?
has benefits and all that? Is it successful more than others? I have a couple thoughts. This is Leslie.
I'm thinking about people who work online and are good with computers.
leaving the house, going on site to a job isn't necessary. But I'm thinking very specifically about
all the work I see, all the jobs I see right now in terms of web accessibility and document remediation.
So if somebody is
You know, if somebody knows how to design for the website, for websites, and wants to spend some time
understanding what makes a website accessible, boy, are there jobs out there. That's my thought. Haley,
so I think that I work with,
lots of different folks, lots of different disabilities, and I don't think that there's any one for
a particular group of people. I think it depends, because everyone is so different and so individual,
that it really depends on your strengths, but also some of your barriers that may be in place or the
ways in which
You can work with assistive tech to be able to mitigate some of those barriers, but I don't think that
there's any one particular job that fits, you know, folks with a particular group, any particular group
best. I do think web accessibility is really great.
If you do have interest in that, I'd be happy to talk to anybody about that because I do work with folks
who go through web accessibility. But yeah, so I don't think that there's any one particular job. I
think it's thinking about your strengths first and looking at what is needed to do particular jobs and
making sure that your strengths and your needs in a job match.
Yeah, I mean, as far from the blindness perspective, I mean, there are still, to some extent, what you
might call blind stereotypical or blind jobs, quote unquote. But a lot of times in our community, those
kinds of jobs are for good or for ill looked down on because they are so stereotypically blind, like
the undertuning and things like this. But the goal of certainly my organization, the National Federation
of the Blind,
is to make sure that all jobs are accessible, or at least as many as we can get are accessible to people
like me and like us as blind people. And I think with appropriate modifications, pretty much any job
can be made accessible to many, many people with different disabilities. I mean, there are and there
have been, even as early as the 1800s, blind doctors. There are blind lawyers. There are currently blind
nurses out there. I've heard of a couple, maybe three blind farmers, blind mountain climbers.
I mean, going to that other extreme. So I mean, again, it's really, I don't think it's about the disability
per se. It's about the accommodations that are made around it. I would say briefly, don't underestimate
the expertise that you develop in navigating the world with a disability. It's an expertise that I don't
have. Everything I've learned that I've talked about today came to me
through someone that identified as having a disability. I had to learn from them and how they navigated
the world for tips and tricks that I could share with others. So that is a very valuable resource that
others may need. So don't discount the fact that that expertise is very valuable as you look for jobs,
because it's something that people tend to overlook from an ableist bias.
All right, wow, this is an incredible panel. First of all, it's amazing.