ADA: Advancing Disability-Friendly Health Care (2019 Celebration Luncheon)

ADA: Advancing Disability-Friendly Health Care (2019 Celebration Luncheon)


– Ladies and gentlemen, welcome
to the Independence Center’s ADA Advancing Disability
Friendly Health Care Luncheon. That deserves a round
of applause, I agree. (claps) So hello everyone, my name is Katie Pelton and I am a reporter and
anchor with KKTV 11 News and I am so happy to be
a part of this today, and so excited to be here. Please join me in giving
a round of applause to a positive note who has
been providing the lovely music for us this morning. (claps) A positive notice here courtesy of the Colorado Springs Conservatory, their music has just been awesome. I love having that this morning. This is the Independence
Center’s fifth annual luncheon celebrating the anniversary of the passage of the Americans with Disabilities Act. This year we’re focusing on the need for more accessible medical services for people with disabilities
here in Colorado and all across the country. At this time we’d like to
acknowledge all sponsors who have made this event possible. In particular we’d like
to invite Maggie Sims from Rocky Mountain ADA Center, Summer Gulseren from Rocky
Mountain Health Care Services and Rob Ruble from
Cascade Investment Group to accept a gift from
the Independence Center for being our promoting sponsors
at this year’s ADA event. (participants applauds) Thank you so much. In addition we’d like to
thank our other sponsors including Premier Sponsors, Sprint Relay, Nami, the Arc Pikes
Peak Region, First Bank, Central Bank or Colorado
Community Health Alliance, Denver Management Advisors, UC Health and Raymond James & Associates. We’ll give them a round of applause too. (participants applauds) This event is also
supported by table sponsors. Invida, Medical Accessibility
LLC, RTA Architects, Comprehensive Computer Consulting and Haynes Mechanical
Technology & Energy Solutions. And we’d also like to
acknowledge Mayor John Suthers and all elected officials
who are present here today. We truly appreciate all
of you taking the time to be here with us today. (participants applauds) On July 26, 1990, George HW. Bush signed the Americans with
Disabilities Act into law establishing a federal mandate
to eliminate discrimination against people with disabilities. Today we’re here to celebrate the progress that has been made and to discuss the work that still remains for us. Many thanks to everyone
here today for taking time out of all of your busy schedules
to support our community and the efforts to advance disability right here in Colorado. As you prepare for lunch,
please take a minute to complete the contact card
that’s located at your tables. At the end of our luncheon,
please drop off those cards at the registration tables
at the front of the building and each person will receive a gift bag courtesy of our event sponsors. I’d also like to mention that
after the ADA event ends, our keynote speaker, June Kailes will present a workshop on
advocating for your healthcare as a person with a disability. This will take place from
one o’clock until 3 p.m. and it’ll be across the hall in the Foothills Conference room. If you didn’t have the
opportunity to RSVP, don’t worry, there’s still some spots available. While lunch is now on its way for you, it’s my pleasure to introduce Drew Wills. (participants applaud) Drew has served on the
Independence Center’s board since 2015 and was the
board chair in 2017. Drew’s commitment and
contributions to the IC are very significant. His passion for improving
the lives of people with disabilities cannot be overstated. Please join me in welcoming Drew. (participants applauds) – Thank you, Katie. Thank you for your warm introduction. I’m very pleased to be here today. I wanna thank all of
you that are here today. It’s a great showing and it is a great day for
people with disabilities. I’m pleased to be here
for another anniversary of the Americans with Disabilities Act, and to talk about the need for
accessibility in healthcare in the Pikes Peak region. I was asked to join the board of directors of the Independence Center in early 2015. At that point I’d been using a
wheelchair for about 10 years due to a spinal cord injury. I was very fortunate to
have excellent health care in rehabilitation, that
along with a devoted family, friends and supporters
allowed me to get back up, regain my independence, enjoy life again and get back to what
some people have phrased in my rehabilitation as
the business of life. Since then I’ve been to many places never thought I would visit, seen things I never thought I would see, met many people who have
inspired and enriched my life, and accomplished things
I never thought possible. For all of us disabled or not, I believe that it is independence, the ability to exercise
our own self-determination that allows us to create,
maintain an existence where we can look forward to all the important blessings of life. I had previously served on
several nonprofit boards in town, both before and after my injury. But the Independence
Center was unknown to me until I received a call. When I read the mission, looked at all the Independence Center does
for people with disabilities, met the CEO, the staff and
all the other board members, I really couldn’t resist. I have thoroughly enjoyed contributing and working with all the
talented members of the board, the staff and everyone else
to support the IC’s mission. The current members of the board and please stand if you’re here, are Joe Faking, Lynn Pels, Karen Sullivan, Tim Rowan, Denise Hawke, Jeremy Chaplin, Tannen Miles, Rich Lewis,
Beth Lake and Clay Martin. Please join me in giving them a big hand. (participants applaud) It’s the people on the board and the staff that make the Independence
Center such a great place, such a great asset to
the community, the state and even the country. Today we celebrate not only
the anniversary of the ADA but also what we hope
is just the beginning of improving access to health
care in the Pikes Peak region. We have such a wonderful opportunity, not only to improve the lives
of people with disabilities but even to save lives for
people with disabilities. Removal of the physical and
social obstacles in health care is a critical part of allowing
people with disabilities to manage and maintain
their own health needs, while enjoying and
participating in the community. Some of the ways we can
do this is by ensuring that there is appropriate
parking available, That healthcare provider
buildings are accessible, that examination rooms are
large enough for wheelchairS. That the exam table can
be raised or lowered to accommodate a transfer, and
that even a mechanical lift if necessary is available
to make that safe transfer. That a scale is available even on a table or even a separate scale
for people to be weighed. And that hearing devices are available for those who cannot hear. The good news is that
all this can be done, it’s all within our ability to do and it just takes a little bit of effort. Being part of the board at
the Independence Center, I’ve met some incredibly
passionate people, but none more so than the CEO of the Independence
Center, Patricia Yeager. Patricia’s, yes. (participants applaud) Patricia’s career encompasses
a lifetime of work in public policy, disability, education, services and advocacy. In the 1980s, Patricia was an appointee of Denver’s then Mayor Frederico
Pena and she was appointed to the Commission for
People with Disabilities. Patricia has a bachelor’s in education from Marshall University, a master’s in rehabilitation
counseling from West Virginia and a doctorate in human rehabilitation from the University of Northern Colorado. But most of all, Patricia
is a dynamic leader, a tireless advocate and a
great asset to our community. Please join me in
welcoming Patricia Yeager. (participants applaud) – Drew, thank you for
such a nice introduction. Drew’s finishing his second two-year term and will be off the board in December, and we are so much better for your contributions and support. We are really going to miss him. I want to thank not only Drew but the whole board for all of their work. It’s a passionate board and
we have a lot of fun together. So please go ahead and eat. This is a little different than usual, we’re gonna talk while you eat. So if you wait till we’re
done, you might not get lunch so please do eat. So you heard Drew speak a little bit about primary medical
services accessibility, and I would like to
elaborate on that thought. That’s the whole theme of
our show today, our program. The lack of access
doesn’t just impact people with disabilities when they
show up at the doctor’s office. When people go to the doctor’s office and their experience is
consistently negative, they don’t receive the quality of services that others receive, they
are less likely to go back. They’re less likely to get an annual exam and less likely to
receive preventative care. So they’re less likely to
have positive outcomes. Since 2014 we have
conducted three focus groups and participants reported
a number of barriers they faced in accessing healthcare. These barriers included
difficulties with transportation and parking office spaces
which are too small, inaccessible paperwork, negative attitudes towards people with disabilities
and having to travel outside of Colorado Springs to
find basic medical services. This lack of accessibility becomes clear when you look at the
disparities that exist for people with disabilities
versus the general population. For example, the cohort
of people aged 18 to 44 of that cohort, 9% of
people without disabilities have cardiovascular disease versus 15% for people with disabilities. Obesity rates in our
community are 11% higher and 22% more people with disabilities engage in no leisure
time, physical activity. According to the National
Institute on Health, adults with disabilities
are 9% more likely to die than adults that don’t have a disability. And one of the reasons for
that is that the healthcare just wasn’t designed to include
people with disabilities. As more and more people
acquire a disability through birth, accident
or the aging process, this becomes even more unacceptable. We’re going to play a short video now with several individuals who locally have faced significant challenges when trying to access medical care. So continue eating and
we will show a video. (bright music) In this video you’re going to be hearing from people with disabilities
from across the state about their experiences
in getting health care. We want to raise your awareness, help people around the state
become aware of the problems that people with disabilities
face in getting health care. And we also want to talk about helping health care
professionals do better by offering disability etiquette. So that you know how to
implement or how to talk to and be welcoming towards
people with disabilities so they will come back and get services, rather than end up in the emergency room which is not conducive
to their quality of life, and it’s certainly much more expensive. – Right now the main thing I have is I can’t get a pap smear. I can’t use the bottom
half of my legs very well because of spinal stenosis and neuropathy. And so I can’t get on the table to where they can give me a pap smear, which is really bothering me. ‘Cause the last pap smear I had which was about two and a half,
three and a half years ago they saw growth and so
I’m concerned about that. ‘Cause as you know there’s cervical cancer and without the Hoyer lift, I am absolutely paralyzed
in helping myself get anywhere getting away. And so I’m right now I’m frustrated because there’s nothing
else left I can do. But God, there must be
millions of people like me who are paralyzed from the bottom down, they can’t get a pap smear or something. I can’t believe this. – Because of the lack of accessibility, there are a number of
treatments that I can’t have. One being weighed. One of the major issues
though is pressure sores being in a wheelchair, and to describe to a
primary care physician I’ve got some skin concerns
but nowhere for them to examine me. Sometimes we’ll try very
precarious transfers onto just a small patient
table, that terrifies me. I’m aware of quadriplegics
that have been dropped and broken their neck a level higher. And if I were to sustain a different type of spinal cord injury because of it I would lose the ability to
drive, I’d lose my occupation. It just terrifies me. For me to go try to be
treated for any condition or even just a well care visit but not to be able to have
that entire examination, it’s just really inexcusable
for an able-bodied person to walk into a clinic
and the hospital say, “Oh, I’m sorry we don’t have needles “to give you the transfusion today,” or to say we don’t have a stethoscope to listen to your heart
even though you have cardiac disease of some sort. I mean that would be intolerable, and society people would
be in such an outrage. Yet for a person with a disability that’s what we face every
time we go to the doctor. – I kind of see the
issues with hearing loss from both sides. Because I’ve been a
patient with hearing loss but I’ve also been a healthcare
provider with hearing loss. It impacts not my ability
to get into a place to get health care like it would with someone with a physical disability but it certainly impacts my ability to access the information once I get there and even before that when I
call to make my appointment. Sometimes with more and
more stuff being done on the computer, sometime
the person talking to you is looking at a screen
either down below them or off to the side, and they’re not making face
to face eye contact with you. Many of us with hearing
loss rely on reading lips to supplement those pieces that we miss. And most people at the reception desk really don’t seem to be aware of that with people with hearing loss. And I think that’s an issue
for people with hearing loss but it’s also a issue for
people with cognitive disorders, it’s also an issue for people who are just busy and distracted. – We spent some time in this video talking about health care and the costs. So there’s two impacts that happened here. One is the quality of
life that person has. And the other impact
is of course the cost. We know that emergency room
treatments are most expensive and can be prevented
with primary care access. So our whole point here
is to make primary care specialty care clinics
accessible and usable for people with disabilities. And you do that in two ways. You make their facility, their
equipment accessible to them, and you make sure that the
people who are treating them see them as people and see us as people and provide quality care as
they would to anyone else. We want to move into disability etiquette. The attitude that you as a care physician, as a care provider have
towards that consumer or your patient will determine whether or not they come back, whether or not they follow your protocol. And if they don’t, then
they’re gonna be even sicker and their quality of
life is gonna deteriorate and our health care dollars
will be unnecessarily spent. We do a lot of things in doctors’ offices to make people without
disabilities feel welcome; magazines, water, all those
kinds of things, a TV. But we do nothing to help people with disabilities feel welcome. And then we wonder why
this cohort, this group ends up in an ER situation
as opposed to going to their primary care physician. – Honestly, I think the
stigma is very very high with the mental health. I was in an accident last year, and so I was on the
scene for a little while and I felt I needed to go to the ER. So they called an ambulance, and so I hear him calling in to the ER. And I disclose do you have any issues? I said well I have a diagnosis of bipolar. And it’s interesting how
it all shifts from medical to even saying well,
she says she’s bipolar so I don’t really know if
this, how real this is. And it was so dehumanizing
for him to prejudge me based on my disability. That happens quite a bit. This stigma is a huge huge barrier for me. It’s very difficult for
people to take me seriously, and so many times I take my husband and then it’s like okay
now you have credibility. Because he sees this and we
take his word for it but not me. – When they just talk to me and then I say I can’t hear you and
they just speak louder, my eyes get all, I look at them and I try to make them
understand I’m deaf. Then I see this facial expression that obviously makes me feel
like I’m not, I’m a burden and I don’t appreciate that. And they get upset and they
think I’m dumb or I mean, stupid or oh, like they should know better or I should know better. And them situations is,
are not the kind of things that I like to experience. I kind of give them the
benefit of the doubt and I understand that mistakes happen, but when they’re willing to come halfway and give me the confidence
as a deaf person to know that they’re trying, I really appreciate that person. And I do go to them more often when I can. – I actually ended up hurting my foot and I had to go see a specialist. They told me that I
needed to ask the person that I was with to come
back and I asked them why. And they told me that because I was blind I had to have someone
with me and it was a rule in that office. And they said well then
we’ll have to reschedule and I told them I couldn’t reschedule because I was about to leave town. I kept asking and I kept
pushing and so they went back to ask the doctor and the doctor said no, I had to have somebody with me. And I asked why, is there something that I’m going to be doing back there that requires an extra
amount of assistance? And they said we can’t talk about that, I can’t tell you what happens in the back. But as soon as I pulled out my phone, they were like well maybe
we can work this out. And so eventually they
did end up letting me in and it was all fine, I didn’t
need any extra assistance. I found out I needed to wear
one of those foot cast boots. I needed one of those. And if I had just gone
on my trip without it I could have caused
more damage to my foot. – So now you’ve seen how
people with disabilities, with physical disabilities
experience healthcare or lack of it. You’ve seen how the etiquette, the health care professionals’ attitudes and their assumptions about you, about the person with a disability, how that impacts care and how
it impacts the individual. So we’re asking you to help us, in terms of we really need
to have our Medicaid Division in this state conduct surveys, identify where are the
accessible health care facilities and clinics around the state and make that available on a website. So that I as a consumer can
decide to go to a physician who understands people
with hearing impairments, so that we can make those determinations but we need that information. And secondarily, and most
importantly we need physicians and healthcare providers to have training around how to interact
with us in a respectful and encouraging way that
brings us to come back to continue our health care and avoid a deterioration of our condition, ending up in the emergency room. But we cannot do this
alone, and we need help in convincing the physicians and the healthcare professionals
to take these steps so that we can receive the health care that everyone else receives. – [Man] For more information, contact the Independence
Center at 719-471-8181. Or at www.theindependencecenter.org. – Wow. (participants applaud) – Wow, that was powerful and I want to thank Donna,
Jeremy and Chaundra, Jana and Rebekka for
sharing their stories. These are examples of the challenges that people face every day when trying to access medical services. We need people like these
who have the courage to tell our stories and to
speak to medical professionals about the challenges we all face, and to let everyone know
that gaining a disability doesn’t mean you have to give
up access to health care. Please imagine what it would
be like to go to the doctor and not have access to being weighed or receiving preventative examinations. This has the potential to
affect the medication dosages, decisions about treatment
and it could even affect a physician’s ability to
recognize a medical condition that could be fatal. As Jeremy said in the video,
it’s truly unthinkable that the needs of this segment, this growing segment of society seem to be so casually overlooked. Well, this is pretty serious, so we’re gonna introduce a
little light-hearted view of all this. I want to introduce June
Kailes, our keynote speaker. June and I have been
friends for many many years. She comes from California
where she’s a highly respected disability rights advocate and consultant. June is recognized worldwide
as one of the original leaders of the Independent Living movement. She is the associate director and adjunct associate professor
for the Harris Family Center on Disability in health Care
Policy in Pomona, California. She’s worked with FEMA, she’s worked with Centers
for Disease Control, Department of Homeland Security and Health and Human Services on policy, planning and training. For the last seven years she’s held a presidential appointment to
the United States access board which sets most if not all
of the access standards we live by today. She has served as both
their vice chair and chair. In her presentation, she’s
going to take a humorous look at what we wish we wouldn’t
see in health care. So sometimes we just have
to stop and have a laugh before we go back to the
arduous task of creating change. June? – Thank you, Patricia. How’s the sound, okay? Good? All right, well this is a variation on a theme from what Drew
said, what Patricia said from the content of the video. So I had a really hard time picking a name for this, these remarks. I thought well the joys of healthcare through the disability lens, that hidden healthcare heavy hassles or what we wish we didn’t see. So let me know when I’m done
which you think is best. So before we start, here’s my contact information and, email me whenever. Now I’m new at descriptive video, so give me some slack here. At the end you’ll have to let me know if I got the gist of it or not. And the other footnote here is that I know and understand that some
of you may not be laughing at some of these items, as this is your welcome
to my life experience and I totally understand
if you’re not laughing. So now that we have that out of the way, contrary to popular belief,
we, people with disabilities have been around since day one. And we’ve had physical equipment, programming and communication
accessibility issues since way back when. Witness this poor
caveman entering his cave with the all too common experience of the narrow entrance
barrier for wheelchair users. But in spite of that we still get… okay, we still get people saying to us, “We’re seeing more of you people lately.” And the ASL interpreter,
there’s a nurse here accompanied by the
interpreter and she’s saying to a diverse group of
people with disabilities, “Yeah, you people we
are seeing more of you,” and a gentleman using
a service animal says, “Well yeah, we’re now free to
move around the solar system.” And a wheelchair user adds, “There are daily shuttles from Mars.” So here we go. That’s what happens when somebody with CP tries to use one of these. Well, I don’t know, here we go. Here we go, flying in
from the solar system. And their vehicle, their plane arrives and lands at the Earth Wellness
Center so there you go. The prevailing unconscious
subconscious magical thinking remains that we are endowed with supersonic and superhuman strength, endurance, agility, intelligence, hearing, vision, memory and trilingual abilities. In other words more like
Spider-Man and Superman, we’re super crips able
to leap over barriers with a single bound. And here we have your
mythical cape-wearing wheelchair-flying super crip taking off. (epic music) – [Man] Faster than a speeding
bullet. (bullet ricochets) More powerful than a locomotive. Able to leap tall buildings
in a single bound. – [Man] Look, up in the sky, it’s a bird. – [Woman] It’s a plane. – [Man] It’s Superman. – [Man] Yes, it’s
Superman, strange visitor from another planet who came to earth with powers and abilities far beyond those of mortal men. Superman, who can change
the course of mighty rivers, bend steel in his bare hands, and who disguised as Clark
Kent, mild-mannered reporter. – Okay, so again we’re all able to leap over all of these barriers. And here we have a wheelchair
user and a walker user who easily leap over killer curbs, sidewalks, routes,
road-blocking fire hydrants and sharp dips in a single bound. There we go. And the other thing we
can do is we can navigate these very steep curbs,
these killer steep ramps with alligators ready to devour
us at the bottom of the ramp if we make it to the bottom of the ramp. Or we can so easily, instantly fix a lift at
the steps that’s broken. Or when they happen to work
we can easily find the key when no one else seems
to know where it is. Or we can surpass the unsurpassable when we get stuck halfway
up in these lifts. So then we have getting
through the facilities. And the first thing we
encountered, yes, the Great Wall ensuring no eye contact. Serving as protection
for the reception staff, protection from our
anticipated dangerous attack. And then there’s the correct
height section of the counter, lowered to the right height
but then they still attempt to secure and fortify
that accessible counter by piling it high with files, potted plants, computers
and computer monitors. Anything to block our line of sight or our ability to read lips. And then we have the frowning wheelchair user waiting in the middle of the crowded waiting room is their so accessible wait space, with two young kids that adopt her and her wheelchair as their
great and wondrous new display and play toy. And then there’s programming access and assistance involving
HIPAA and privacy at its best. The receptionist assisting a couple both wearing dark glasses, one using a cane, the other a service animal
and she’s helping them complete forms while nine people
in the crowded waiting area peek over what they’re reading and anxiously await the couple’s answer to “Do you have any sexually
transmitted diseases?” And then there’s the physical access. The postage stamp bathroom,
the airline sized bathroom with the great and not pretty alternative of urinals or peeing in the pot. Then we have the gauntlet. Getting through the
narrow treacherous path to the exam and treatment
rooms full of obstructions, protruding objects, stretchers, IV poles, stools and chairs. Then we have the unusual
accessible dressing and changing room chock-full
of stored medical equipment, canes, crutches,
wheelchairs and paper goods that come streaming out
when the door opens. And it takes forever to empty
the room so we can use it. Then there’s the elusive
matter of getting weighed versus many of us being
told, just guess your weight, just guess your weight
and we know how that goes. So here’s a happy-go-lucky
plump nurse wearing a hard hat. And she proclaims, “See, I knew we had that accessible scale “around here somewhere.” Well, a skeptical wheelchair
user also wearing a hard hat sits on a loading dock scale
with a sign on that wall that reads, WAYEM Health
Plan Shipping & Receiving. Hard hat area. This is not made up by
the way, this happened. Then we have what we’ve already mentioned which is the very usable exam room with plenty of maneuverability
space for mobility devices. Then there’s equipment access. Now, not everyone can do this but this is me on a bad hair day demonstrating my breathtaking
Cirque de Soleil act. Using well-placed grab bars to mount a very high exam table. Good luck with that. Then we have the infamous
instructions to just hop up. So here we have the
cooperative wheelchair user explaining to the uninterested doctor, “I know I can get my
wheelchair through the door “but I don’t know how
I’m going to get my body “into that machine.” And that machine looks
something like an iron line from the dark ages. Then we have the X-ray
tech obliviously pointing to the super-high x-ray table with icicles hanging off the edge. While the puzzled looking
shivering barefoot walker user stands there with her frozen blue butt popping out from the open
at the back hospital gown. And she’s envisioning in her
mind’s eye a table of ice cubes and y’all know how easy it is
to move when you’re freezing in addition to staying still if you even manage to get on the table. And here we have let
her do her thing first. (applause) So this is an obnoxiously
cheery white coat-clad doctor who’s instructing a
frowning perturbed-looking wheelchair user wearing a hospital gown. Again open at the back to just hop up. She crosses her eyes,
jumps on a trampoline, does a triple back flip and lands backward with her head resting in
the exam table stirrups to a roaring applause. So I don’t know if I could
replay that now, let’s see. This thing does not like me at all. There we go, here we go, triple back. Oh, backwards, okay here we go. On the trampoline, triple back flip and lands on the stirrups. (applause) And then we have programming
access client very very wrong. The doctor explains to the
(mumbles) wheelchair-user, “We’ll just examine you
in your wheelchair.” Anyone had that experience? Okay, well it looks like this. (tools whirring) So what happens here is
the poor wheelchair user is hoisted up on a gas
station vehicle lift and three workers zoom
in with their drills, their air pumps or grease
cans, and various other tools which I have no idea to work on him. How cool is that? Not, not cool. Okay, then we have be a blended equipment and programmatic access issue
of getting on the table. Even when a height-adjustable
table is in place some people still need
transferor assistance. And here we have a jolly
nurse wearing blue scrubs driving a forklift with a sign TLC, you know what that means, right? TLC, Tender Loving Care
Health Plan, we’re innovative. She exclaims, “We’ve got
that transfer assistance “you requested,” and
she’s talking to a group of diverse today’s people
with visible disabilities looking her way. And here’s one, I just
haven’t produced this yet but I couldn’t resist sharing it with you. And it goes something like this. They’re saying to wheelchair
user getting a mammogram, “Could you just stand
up for a minute, please? “You mean you can’t even
stand up for just a minute?” Or could you take that (mumbles) so we could get a decent picture. Okay, so really this brings up
something, just a side issue but something a lot of us women feel needs to be stated. And it’s expanding view
of gender equality. Since women believe mammograms
were invented by men, we want to also see some gender equality and inclusionary practices in this area. And thus we have… (participants laugh) People love this one. We have the manogram, with you guessed it, the same squeeze experience
women have to endure. Only for men it’s a bit lower. Okay, remember that one. Okay, and then we have
communication access. This doctor is still proud of
repurposing his stethoscope as an assistive listening device. As he shares the earpieces
with his patient, while using the opposite end
as a makeshift microphone. And he’s yelling, “Can you hear me now?” And there’s the assumption attitude thing. There’s a bias that if
you have a disability, you’ve crossed the line
from half the sickness and you’ve fallen off some health cliff. Because disability in health cannot exist. The assumption is… Never return to health again, a disability means you’re sick period. The assumption being that the
quality of our life sucks. Witness this group therapy session depicting people with a variety of visible and hidden disabilities
passing tissues around crying, looking depressed, sad and despondent while the cheery facilitator
is making her comments. And then we have all-knowing doctor telling a sad-eyed wheelchair user, “If I were you, I’d smoke too. “I’d drink too. “I’d overeat too and
I’d be depressed too.” And then we have the
neverending plea for people to update their antiquated
negative, stereotyping, disability related language,
that rarely updated thing. Mentally adapted language thing. So outside this accessible unisex restroom with a sign reading handicap bathroom, a walker user says to a wheelchair user, “I sure hope this toilet
is not handicapped. “I really need one that works,” as he pictures in his mind’s eye a handicap, tilted, wobbly and multiple cracked broken toilet. And the press also does a job
on us with their language. This is an article in which they wrote ignoring the need of (mumbles) language, they describe these early
morning shopping mall walkers as even including a stroke
patient and an MS victim, because we never shed that victim or patient label. So here we have these mall walkers with the doctor and
his stethoscope pressed to the walking so called
stroke patient’s chest. And in the back of the line
of the group is a walker user followed by a medical tech in scrubs, and that’s probably in the MS
victim that he’s following. So there you kind of have it. A brief glimpse at the hidden hassles of the disability healthcare
experience which is not simple, and it’s all about the
details, the diversity, the nuances and the complexity
of living with disability. So as you now know, I’m not really a comic but I spent decades trying
to get these points across in more impactful and indelible ways. And you’ve been exposed
to a slice, only a slice of my attempts. I’m always collecting new ideas so please share your ideas with me and I’ll see if I can
convert them into something, some kind of cartoon or
something that just helps to get the point across in another way. So lastly on this link here, I know these kind of scenarios, they never occur here, right? You guys have this all together, there’s no magical thinking in this group. But just in case, I leave
you with some resources you could use to decrease
any of that magical thinking that others may have. So there’s a resource for you at this link which is www.jik.com/temp/hn.html. That’s a mouthful but if
you didn’t get that down, just email me and I’ll send it to you. So that’s it, thanks for listening. Here’s my email and thank you. (participants applaud) – So I’m curious, I know
there’s a lot of people in the room with disabilities. Could you applaud if any
of this applied to you? (participants applaud) When I went in for surgery
and the whole surgical suite is in masks and they start talking to me, and I can’t read their
lips, it’s like oh well. And then they put me under and I didn’t have to
worry about it anymore. So thank goodness for that. June, thank you so much for
giving us an enlightening view of healthcare for people
with disabilities, and believe me this is
not an exaggeration. It’s a humorous look at
what we all go through and I’m hoping we’re going
to be able to change this. You’ve given us important context about equal access for healthcare for people with disabilities. We believe that, the IC
in particular believes that part of spreading
medical accessibility is to demonstrate an alternative way, to the current way that
examinations are provided and offering an incentive
so medical professionals can embrace the adoption
of technology necessary for expanding medical accessibility. Well, the medical system in this town has heard me loud and clear about this, and I decided we needed to be nice. So in 2018, we set aside
75,000 from the IC fund to bring better accessibility to medical and practices around
the Pikes Peak region. We held a contest and challenged
people receiving Medicaid or Medicare with disabilities
in our six county area to nominate their primary care doctors. For the provider to receive
the most compelling nomination, we purchased an accessible
exam table with a scale. We also placed a Hoyer
type lift in their office so that they can transfer
their patients more safely, and we put a hearing
loop in so that people who are hard of hearing or cochlear implants can communicate. At the end of the contest, we had accessible equipment delivered all across our catchment
area including El Paso and Teller County and reaching as far east as Cheyenne Wells. Accessible clinic equipment
from the fund can be found in the following 10 locations. The Value Care Clinic got a hearing loop. They already had two lifts,
two tables that lifted. Centerpoint Medic Family Medicine, the office of Dr. Charles Ripp, Eastern Plains Medical Center, Matthew-Vu Medical Group, the Teller County location of peak Vista Community health centers, Prairie View Clinic, Kit Carson, the Set Clinic in Colorado Springs, Summit Medical Clinic
and Sunrise Healthcare. I’d really like to give them
all a round of applause. (participants applaud) As a result of putting
all of those out there, in 2018 we knew of one or two tables. Now we know that there are
around 40 tables located in the Pikes Peak region, the Peak Vista found a number of tables, other Medicaid providers have
put tables in their offices. So you can visit our website
and see the locations so that you can make a
choice to go to an office that is accessible to you. So the IC Fund this year will
be investing another 75,000 to make dental care disability friendly. We’re planning to work with
the dental healthcare providers to expand accessible dental services to people with disabilities
here in the Pikes Peak region. So we’re again asking
people with disabilities, on Medicaid and Medicare
to nominate a dentist that you think should be accessible to people with disabilities. There are also other solutions
that make dental care more accessible to the
deaf, people who are blind, those with head injuries and
mental health disabilities. And we’ll be sharing those
with the dental practices. You can also go to our website
and see what we learned from having focus groups
with people with disabilities talking about their experiences
in the dental chair. So I encourage everyone out there, people with disabilities to
please nominate a dentist and we will see how far this money goes in making dental services accessible to people with disabilities. I’m so pleased that we have here today one of our primary care
providers who participated in our accessible medical
equipment giveaway and accepted the equipment
as part of the initiative. We also have a few of the individuals who took
the time and had the interest to fight for more accessible healthcare and nominated providers. From the bottom of my heart,
I would like to say thank you to all of those people who
took the time to nominate and who took the time
to accept this equipment because it’s going to such a difference in healthcare in our
region, thank you so much. (participants applaud) – So good afternoon, I’m Betty Joshoberg. I’m from Presque Isle, Maine. That’s northern Maine. It has a population of about 7,000. I moved here two years ago in
2017 to be near my daughter and son-in-law and now two grandchildren. I have found since I’ve been here that there is a big difference
from an area of 7,000 people to a city of 450,000 at least. And I had a difficult time when I arrived. I don’t know why I naively
thought that it would be easy to just move here and not have any issues finding care. However I found that not to be the case. There are a lot of hoops to jump through for a disabled person and
I’m just very grateful for the Independence Center. They have helped me with
obtaining another grant because when I was actually fitted for a more appropriate wheelchair, it was too heavy for the lift
that I currently had in my van and I was able to through Paul Spots in the assistive technology department obtain grants in order to put in a lift that would actually lift this wheelchair. This wheelchair’s
probably about 450 pounds and it is awkward for the balance, to have the balance with a
large wheelchair like this. I do have some back wheels
and I have made a few dents in walls and things like that. And I should probably tell you, I have limb girdle muscular dystrophy. It’s a progressive
neuromuscular disease subtype 2A which they are starting
to do more genetic testing and finding out what the
patterns of inheritance are as well as some of the prognosis. And I also have something, it’s
a connective tissue disorder called Ehlers-Danlos Syndrome. And that affects my
ligaments and my joints. So I really need to have medical equipment that’s accessible and I can’t have people yanking on my arms or my legs because I’m prone to dislocation. So I had a lot of concerns when I arrived. There’s a lot that still needs to be done as far as accessibility in the city and in the surrounding areas. When June was talking about
killer curbs (chuckles) I could relate because
one time I did last summer go over a curb. There were curb cuts on every corner but apparently there
wasn’t one on that corner, and I did tend to fly through the air and I did break my right
arm and I’m right-handed. So it’s been a little bit of a challenge but I’m becoming ambidextrous. But yeah, I mean there’s so
much that an able-bodied person doesn’t really think about. And it’s extremely important
for our safety and our health that these issues are addressed. And so when I saw that
the Independence Center was taking nominations for medical offices to receive adaptive
equipment, I was thrilled. Because I had put off
a complete examination. I thought well, there’s no way
I can get on that exam table and most of you know that
when you go to get up on that exam table there’s
a little step attached. Well, if you step on that
and you’re trying to get up which is impossible for
me, that thing tilts, and that’s scary in itself. So I’ve been putting
it off and dreading it. And when you walk into a medical office and June did such a job
portraying it in a humorous way, there are barriers. And in a medical office especially, that really ought not be so. So you go in and you
do have those barriers that she mentioned, and sometimes the rooms are rather small. For this type of a
wheelchair, it’s quite large, it’s very difficult to
maneuver but thankfully at the provider that I go
to, they do move chairs before I come in. They know I’m coming in. But yeah, that exam table,
that just was scary for me, how would I ever receive
another complete examination. I wasn’t sure how that
was going to happen. So when this happened and
they asked for nominations, I nominated Matthews-Vu Medical Group. And they have been wonderful. And now they do have
an adaptive exam table as well as a Hoyer lift
for those who need it. So far I could probably make a transfer into a lower table but a lot of people, they need that Hoyer lift because they are not
weight-bearing at all. And so I’m just thankful
that they presented this and then they awarded
various healthcare providers the adaptive equipment that
makes it so much better for us, safer and also more comfortable. Because when you have a disability and then you already feel
different and people feel a little awkward around you at times, then you go into a medical practice and they’re scurrying to try to find a way to accommodate you which,
it’s great that they are, they’re wonderful,
however you start to feel very self-conscious as
they scramble and try to make things work for you. And to have things in place
I cannot express to you what a difference that makes. And then we don’t go in there
already feeling apprehension, feeling self-conscious, feeling awkward, we feel more comfortable. And at that point we feel
I think, more apt to talk and share our concerns with
our medical professionals and also just feel an overall
sense of being cared for. And I think that’s very important. Disabled people, they come
in all shapes and sizes and all kinds of disabilities
but the one thing is they deserve our care and our respect. And it’s very important that we do that for every human being. And we’re starting to realize, people are becoming more
aware that these adaptations need to be made for these people and I’m just grateful to be a part of it. I’m glad my nomination was accepted and I want to do my part
to help going forward, to make positive changes in
our area for the disabled. Thank you. (participants applaud) – Good afternoon, how’s everyone doing? Good, my name is Rachel Bloodsacker. I am a registered nurse
and the practice manager for Prairie View clinic in
Cheyenne Wells, Colorado. Prairie View Clinic is associated with Keefe Memorial Hospital. We also have an outreach
clinic in Kit Carson, Colorado which is about 25 miles west
from where we’re located in Cheyenne Wells. That clinic is open two days a week. So we offer care in two
separate rural areas five days a week, but
two in the smaller area. My guess is that many of you
have probably never even heard of Cheyenne Wells. It’s a rural community
located in eastern Colorado about two and a half hours
from Colorado Springs. So we are literally on the Kansas border. According to our 2010
census, we have a population of around 1,000 people. Kit Carson is as I said 25
miles west of Cheyenne Wells with only 230 people. Both towns are located
within Cheyenne County, making that a grand total
of around 1,800 people. So in other words, we
truly are the frontier. As the only health care
provider within the area, our clinics treat people of all ages from birth to age 100 and more. Our patients are not your
average 9 to 5 employees, we serve ranchers, farmers, oil workers. And currently we have a large
amount of wind farm people in our community as well. We also have a large
population of senior citizens. Many of our patients are
on Medicaid and Medicare. But no matter what their
age or their background, they all rely on our services
to get the care they need instead of having to
drive longer distances. When we examine a patient,
we’re committed to giving them a complete head-to-toe examination. That’s the best way to ensure
that you’re not missing any important details when it comes to building a comprehensive
health care plan for them. However, because we do serve
such a large population of patients who are geriatric or disabled, many of them arrive at the clinic using wheelchairs or walkers. This can make it difficult
to get an accurate height and weight because they may not be able to step on our scale. Even if they can they’re often unsteady, so not only is it hard to
get correct measurements, it poses a safety risk for
them as well as ourselves. For these same reasons, we’ve
often had to examine someone in a chair or within their wheelchair. This is because we cannot
safely transfer them to an exam table. If we cannot get an
accurate weight or height and are unable to get
them on to the exam table, we’re missing very important
pieces of the puzzle that have a significant
impact on a patient’s health. Unfortunately, up until
we received the table, we had some patients with disabilities who had actually never had
a complete physical exam. That’s why the gift of an
upscale accessible exam table we received from the Independence Center meant so much to us. Having the table has made a big difference in how we care for our patients. It’s height adjustable so we
can easily transfer the patient to the table. It also has a built in
scale so that it’s easier to get an accurate weight
and we can measure them right on the table. Our patients seem to love this
table and we all feel better knowing that they’ve left our office after having a comprehensive exam. We’ve also discovered other
ways to use the table. As some of you may know, children
are not always cooperative when it comes to physical exams. Now instead of taking them
to several different places within the clinic to receive their vitals, we often head straight
back to the exam room and we’ve had extra good luck weighing our newborns on this table. The table not only makes
it easier on our patients, it’s easier for our staff as well. We don’t have to worry so
much about workplace injuries when transferring a patient
or adjusting the table to help the patient. We are truly grateful to
the Independence Center and to the one person who
nominated us, Michele Chamberlain. This gift makes it
possible for us to continue to improve the quality
of healthcare we provide to our community, thank you. (participants applaud) – Thanks so much, Rachel. I actually have been to
Cheyenne Wells many many times. I have a lot of in-laws down there so I’m sure we know each
other somehow. (laughs) All right. I want to say thank you. First of all, I have several story ideas after watching all of those
videos that we saw this morning and so thank you for
bringing that to light and bringing the awareness
to our community here. I think we all can make a difference. And thank you for the stories about the impact of
inaccessible healthcare and how the dynamic is changing as people with disabilities are empowered
to receive the services that all of us need. For too long now people with
disabilities haven’t had access to the level of care that they deserve. And I ask you today if
you have a disability and have avoided going to the doctor, because they aren’t able
or accessible for you please reconsider doing that. You can find a list and map
of local health care providers who have accessible exam tables and other accessible medical equipment, just go to the Independence
Center’s website as mentioned before. Now I’d like to introduce Colleen de Walt. Colleen comes to us from Colorado
Community Health Alliance which oversees care for
people with disabilities who utilize Medicaid here in Colorado. Colleen will take a few minutes to discuss the positive changes taking place here in the Pikes Peak region as it relates to medical accessibility and the work of the regional
accountability entity or RAE to help ensure equal
access to medical care for people with disabilities. (participants applaud) – Thank you Katie and also Patricia. It’s an honor to spend the afternoon with such a large group
of dedicated individuals. My name is Colleen de Walt and I work with the Colorado
Community Health Alliance. And I’d like to first
start by saying thank you. The Independence Center has
been a huge asset and resource to us at the Colorado
Community Health Alliance. And what other way would you
like to spend the afternoon than here with nearly 350 individuals, not only for a lovely lunch and also the great educational event that we’re gonna have today. I can’t think of a better way to celebrate the Americans with Disability
Act than here with you all, so I want to thank you for your time. The Independence Center’s
commitment to increasing access to services and the empowerment of individuals with disabilities absolutely aligns with the work we do at Colorado Community Health Alliance. I’d also like to thank the individuals for sharing their experiences today. I have the pleasure of working directly with members enrolled in Medicaid through our Member Advisory Committee. And hearing those personal
stories is absolutely essential for not only folks like me,
but also health care providers. So I thank you for sharing that, I know it’s sometimes difficult and it’s hard to be vulnerable
in front of so many people. So I also want to give
a big nod and thank you to some of the partners
we have here joining us. We’ve been working
closely with Matthews Vu as you heard earlier
as well as Peak Vista, El Paso County Human Services
and last but certainly not least our friends
up at the Aspen Center in Cripple Creek. So I’d like to thank them
for joining us today. These are partners that are
working every single day to ensure healthcare access. So as Katie mentioned, I’m
just gonna spend a few minutes talking with you today about who we are. Oftentimes you might hear
us referred to as CCHA. And I know in the healthcare world, there are so many acronyms,
I can’t keep them straight and I know you probably can’t either. So whether it’s a regional
accountable entity, a RAE, a RICO, a BHO, the
alphabet soup goes on and on. But what you need to
know is that we’re here to help you and your family
navigate the healthcare system. Colorado Community Health
Alliance is actually the regional organization or RAE or all the other alphabet
soup that you can think of that serves the community here in El Paso Park and Teller County. We also serve counties up
north including Boulder, Broomfield, Clear Creek,
Gilpin and Jefferson counties. We were actually formed in
2010 specifically to meet the needs of members enrolled in Medicaid. We served for a few years
up north in those counties that I listed as an entity
and then also expanded just last July, July
2018 down to this area. So CCHA administers the physical and behavioral health
benefits and coordinates care for nearly 303,000 people
in our communities. With nearly 167,000 of those
just here in El Paso Park and Teller County. We’re committed to ensuring access and disability competent
care for our members by connecting them and their families and caregivers to resources. Most importantly to improve
their overall health and to meet their own
personalized health goals. Our goal at CCHA is to help
health first Colorado members or Medicaid, they rolled out a nice fancy new name for Medicaid, to get the most of their health
care and live healthy lives through a person-centered approach. That’s something that I’ve had a lot of personal experience with and developing person-centered plans and patient centered
plans, and it’s something that CCHA is committed to as well. We do this through nearly
100 care coordination staff. So that means we have nearly 100 staff who work directly with our members and providers every single day to ensure that there’s less duplication of services and you’re not having to
tell your personal story over and over and over again. Our care coordinators
are registered nurses. They’re also social workers and behavioral health coordinators, peer support specialists as well as community resource specialists and they’re here in your community. I’m proud of some of our team
that are here with us today who work directly with our members. And if you or someone in your family or someone you work with
you think would benefit from care coordination services, please reach out to us. We are here as a resource
and we’re here to serve you. One way that CCHA has been helping to increase accessible
care for individuals with disabilities is working
through our provider network that we contract with. We have nearly 4,000 providers
in the area down south here as well as up north that we
have been communicating with and increasing their education in terms of disability competent care. In the last year we’ve
hosted provider town halls for our physical and
behavioral health providers in the community who
are part of our network. And most recently, the one
that we held in the spring focused primarily on providing
disability competent care. We actually had an expert
from the resource exchange come and speak to our provider network. And they aren’t a continuing
medical education credit for it to hear about what they
can do in their practice, and how they can implement
different strategies in their practice to improve
the medical accessibility for individuals with disabilities. We also had some folks take advantage of one-on-one consultations immediately after our provider town-hall, particularly individuals who
work with pediatric patients that they know are transferring and aging out of their practice. And they wanted to make sure that they were getting connected to adult primary care providers
that could meet their needs. Our providers also have
ongoing access to resources to help them provide
disability competent care through cultural competency
training on our website as well as ADA requirements
and communication tools. One thing that we’re very proud of and something we collaborated with the Independence Center on closely and Patricia mentioned it briefly earlier is working to survey and collect
from all of our providers. Not just our primary care
and physical health providers but also our behavioral health providers, information about the
resources they provide in their practice. So whether that is a lift
or an accessible scale or other adaptive equipment that they have in their practice. And right now we’re doing that surveying with the goal of making that
available on our website and also to our call center
or care coordination staff, so that they can help
coach and identify places that would be the best
fit for our members. So we’re really proud of that work. It’s something that we’ve been running full steam head towards and
now we’re in the process of actually doing the building of that communication between systems. So we’re excited to launch that soon, we encourage you to look forward to that and we’re gonna continue
to build out those criteria that people would provide us, so they know what types of
resources a practice might have and if it’s a good fit
for them and their family. Finally, but certainly not least, CCHA is committed to
hearing from our members. So as I mentioned earlier,
I have the opportunity to work with our member advisory committee which is 15 members
down in the El Paso Park and Teller County who provide us guidance on how we develop, execute
and communicate our programs. And it’s an opportunity
for us to work directly with our members, very much
in a person-centered approach that we’re doing things with
them, not to or for them. And that’s something
that CCHA is committed to continuing to do. And if you or anyone that you know would be interested in joining the solution-focused committee, I’m gonna do my shameless plug
of please go on our website. Find that information, we
want to continue to grow the presence of that group. So finally I’d like to thank
the Independence Center and their very talented
and committed board for their unwavering support for individuals with disabilities. And CCHA continues to work with you as well as the Independence
Center in the years to come. So thank you. (participants applaud) – Thanks so much Colleen. Let’s give another round of applause for all the speakers here today. (participants applaud) So I have to give a very
quick shout out to my dad who’s here today. This is his first time coming to this and he’s worked with
people with disabilities for nearly 40 years, and
always instilled in me how important it is to be an advocate for people with disabilities. And I really think it takes all of us, every person in this room and
every person in our community. So I want to say thank
you to everyone here and let’s give a round
of applause for everyone who’s here in this room. (participants applaud) Including my dad. (laughs) At this time, this is pretty exciting, check the back of your
program that you have on your table there. If you have a puffy smiley
face sticker on your program, you’re the lucky winner of
your table’s centerpiece, the gorgeous sunflowers
that you see on your table. Yeah, that’s pretty fun. (laughs) I love that, everyone loves sunflowers. Don’t forget to turn in your contact card at the registration table
near the front of the building as you pick up your gift bags
courtesy of our sponsors. In those gift bags,
there’s several fun goodies from the sponsors. And you’ll also find a report
on dental accessibility. Please take time to look at that report. If you have a dental
provider whose practice is not accessible, nominate them to receive accessible dental equipment as part of the IC Fund’s accessible dental equipment initiative. You can do this by visiting the Independence Center’s website, searching accessible dental. There you can fill out and
submit the nomination form. If you RSVP’d to participate
in the advocating for your health care workshop, that’ll start here in
the next few minutes. It’s being held in the
Foothills conference room across the hall. If you didn’t RSVP there’s
still some seating available and ASL interpretation is provided too. We hope to see you all next year at the Independence Center’s
ADA Celebration Luncheon. That will be held on
Friday July 24th, 2020 so mark your calendars. Thank you all so much for having me and for being here today. Have a great rest of your day. (participants applaud)

Author: Kevin Mason

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