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Advocacy and Awareness: Jimmy Clare's Inspiring Presentation on Autism Challenges
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Jan 1, 2025
#AutismAwareness, #InsuranceReform, #AdvocacyForAutism, #ParentingSummit, #InclusiveSociety, #JimmyClare, #AutismCommunity Join us for an enlightening session with Jimmy Clare at the 1 and 36 Autism Parenting Summit, hosted by the SJ Child Show. In this insightful presentation, Jimmy delves into the pressing issues faced by individuals with autism and other similar challenges. His talk highlights the often-overlooked obstacles imposed by insurance companies, revealing the hidden dangers lurking within the system. Jimmy Clare, a passionate advocate for the autism community, brings a wealth of personal experience and knowledge to this summit. He articulates the struggles that many families and individuals encounter when navigating the complex world of insurance coverage. From delays in vital services to outright denials of essential care, the hurdles are numerous and, at times, overwhelming. Throughout his presentation, Jimmy aims to shed light on these critical issues, emphasizing the need for systemic change and greater awareness. He provides real-life examples and stories, illustrating how insurance companies can inadvertently or even intentionally hinder access to crucial support and resources. Moreover, Jimmy is committed to empowering parents and caregivers by offering practical advice and strategies. His goal is to equip them with the tools necessary to advocate effectively for their loved ones. His talk is not only informative but also inspiring, encouraging viewers to become active participants in the fight for equitable treatment and support. By addressing the complexities of insurance policies and their impact on those with extra challenges, Jimmy hopes to spark meaningful conversations and drive positive change. His presentation is a call to action for both individuals and policymakers to work towards a more inclusive and understanding society. Whether you are a parent, caregiver, or simply interested in learning more about the challenges faced by the autism community, this video is a must-watch. Gain valuable insights and become part of the movement advocating for fair and accessible insurance practices. Don't miss out on this opportunity to hear from Jimmy Clare and be part of the conversation at the 1 and 36 Autism Parenting Summit. Tune in, listen, and join the effort to transform the landscape for those with autism and similar challenges.
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0:00
yeah I love this Brenda's just right in there too he missed it but you need a drum beat she said
0:06
yeah oh man oh wow yeah so much fun we're having and you know so um so
0:14
special and we're it's all this important information but it we can have
0:20
so much fun with it at the same time so yes um yeah it's it's feeling really
0:26
really good um it looks like our uh next guest Jimmy is in the background Jimmy
0:33
how how are things going everything going back there every you're getting your slides ready so hopefully we'll see
0:40
him I don't know if we have any time in between that we need to do any commercials hey there's Jimmy there is
0:46
he hi Jimmy hello how are you doing are you
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ready I'm almost ready I know you are I know you are he's you know this is Jimmy
1:00
Claire our crazy Fitness guy um okay yeah so and it's I've been lucky to have
1:10
Jimmy on my show we've been on each other's shows I think and um just have
1:16
really kept in contact and in touch for the last couple years and I've seen all of his growth and advocacy so um yeah
1:25
it's great to have you here Jimmy thanks for your time today ah thanks for having me uh I'm always happy to be uh a part
1:32
of big things like this yeah it's so nice to have you here do you have slides
1:38
you're going to be using today yep okay did you pull those up yet yes I
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have okay do I I don't see that they're up there but maybe you could share your
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screen with us and then we'll see them I'm uploading them right now okay
2:01
wonderful I think it went through and Mia again thank you so much
2:07
you are so just so incredible to jump on here with
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me um and Danielle had a wedding she had to go to this afternoon and then I think
2:20
I just forgot to schedule someone to be here I am just honored and blessed to
2:26
have you here by my side and it looks like um there we go there is his his slides ready to go so if you're ready to
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go Jimmy we will let you take the stage I'm ready to go
2:43
cool so uh today I'm going to be talking about the barriers uh about problems with the
2:50
healthcare industry AR with people with extra challenges it's gone on far too long it
2:57
needs to change it does not work and here's
3:03
why so I don't know if you can see the numbers I I try to make them uh as big
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as possible without making all blurry but uh as you can if you can see very
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well there's uh back in uh 1992 uh I was born in
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1993 there's a steady in growth of people being diagnosis with
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autism now I made this presentation very broad to fit everyone on the extra
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challenges autism included Etc I know this is just from the autism parading
3:44
magazine so uh obviously it's a little slightly different but I just wanted to
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show you that as the years progressed there's more people with
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being diagnosed with autism Etc we are currently in uh well as of last
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year in 2023 it was 1 in 36 I believe now it's uh 1
4:10
in34 in 2024 and so it's a steady pace and
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because autism diagnosis is keeps expanding and growing and uh and faith
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and basically the Spectrum keeps widening and widening and widening well
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that eventually needs to be revamped too it it might as well just be a spider web
4:39
because eventually the spectrum is should run out at some point so it
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should be branching off of each other like a spiderweb but that's another story for another lat another time later
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but uh but the problem doesn't just lie it's not a problem that the autism OS
5:00
rate has skyrocketed the problem is is that the health insurance does
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not understand the extra the extra help
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and care that people need with extra challenges and I'll share another
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alarming statistic with you so according to the New York Times 60% of people with
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extra challenges have trouble with getting the care that they need from their insurance that is a lot and that is
5:35
coming from a either this year or last year I forget
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off the top of my head it was last year I believe like 99.9% certain was last
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year 60% of them could not get the insurance
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and I truly believe Insurance simply does not understand that that people
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with extra challenges need specialty kind of care and here's
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why so maybe uh I'm sure many of you who are watching
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can agree that they have contact contacted their insurance at
6:20
some point uh whether to get something approved or whatnot and they deny you
6:27
because of some person who said say we have an expert they don't tell
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you what they're an expert in they just say we have an expert who knows this
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well I I truly believe that those people
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yes they have a doctor's degree but I asked my I have this uh
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thing called SP stenosis basically makes it hard for me to move my head left and
6:58
right up and down very limited Mobility back in
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2001 uh I got was back in 2001 there was only a 1%
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chance to uh fix my spinal sosis with
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surgery well that one
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so uh so there was like a 99.9% chance that it was not going to
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work so uh and I tell you this
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because uh I'm currently in a fight with
7:39
my insurance because they told me I cannot get my an MRI my last MRI was
7:49
2013 a person a reasonable person would say oh this thing this document is
7:56
outdated by 10 something years ago oh yeah go go ahead go do it
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but uh now I'm currently fighting because he uh he has a so-called expert
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says you don't Physical Therapy will help your neck my neck has been feeling
8:16
very discomfort lately because of physical therapy
8:21
so it clearly so like I said the system needs to change because
8:30
they you know even asking my other doctors who are Specialty Care and
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audiologist uh I'm just going to go with that one because I have a long list and like my audiologist he knows what spinal
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sosis is but he but he but he's not an expert in it so uh so what I'm saying is
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that yes you can be a doctor but not but they can't be an expert in everything and that's why Special Care
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exists and uh and I just want to touch on one other thing on the slide the
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system is has a one-size fits all doesn't sound like it's not it's it
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see it seems like the healthc care industry took some kind of uh idea from
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the special education uh side of things or maybe it was vice versa but the one size fits all
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does not work here's a secret it's
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broke so here's another so here's the problem
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insurance has certain procedures to get certain tests and some specialty doctors won't
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see you without these certain tests so for instance I'm G to go back to my
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story then I'm and on so uh today I I uh I finally got an
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appointment with uh a pa
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uh who for in the neurology department or
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Neurology Group and they told me uh well
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we you can't see the doctor until you get your
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MRI a latest Samurai within the last year and I and I said to them it's like
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oh gez uh what do you think I I like I would love to get one but
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unfortunately my insurance does not want to prove it and we go through all the
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things again and it's like well since your symptoms are not worsening we not
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uh Insurance may not approve it anyway huh so I basically have to be
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uh uh not making fun of anybody but so basically I had to be crippled and uh
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become a vegetable in order to get an M I didn't exactly say those exact words
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well until now but I'm like what kind of system is this it's totally garbage and
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it needs to go so and then you have insurance
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companies that all about the money that's what I believe because you they
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rather to save a few ly B okay I'm not going to say ly because $4,000 for a
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test is not lousy but they make all this hand money hand over fist money
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sometimes you even have to you have to pay a large premiums and just for a MRI that's been
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10 years or 12 years whatever the time frame is unless since the last one then
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I R the for go 4,000 for that I I think I'm I think I deserve at
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least an a a baseline of where I am today in
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2024 yeah well here's a little surprise for you the Health Care system does not
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have any logic they think about the money in front of them but they don't think of the
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long-term for the long term if I become a paralyzed in a vegetable I from the
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neck down they're gonna have to pay 10 times more than the MRI Etc and etc etc
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so they just see what's in front of them they don't look at longterm and two steps uh or five steps or 10 steps down
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the road they don't see the bigger picture they don't care about the bigger picture and that's where karma is going
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to bite them in the butt
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and and and my doctor explained this in two words he's basically said that
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insurance either wants you're fully healthy which is not very possible because there's always
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some kind of slight some kind of
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um extra challenge that somebody has whether it's uh autism or slight arthritis over
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the years or something else either they want you truly healthy
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or they want you dead and he said bluntly like that but I
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was like sounds a about power for the course and I agree with that and I I I
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I'm struggling through the system right now and I don't like it I don't
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understand stupid and this is stupid and the doctor the
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doctor let me see if I can move that no I can't d i can okay so the doctor on
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the health insurance and think they are experting everything like I said you can be a doctor but you can't possibly know
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everything and here's why it's like saying Google knows everything when they
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really don't they don't know everything even chaty PT does not know
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everything and I was going to give you an example but I'm not going to do that
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example because I don't like the example so
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just so here's what needs to change the cost of insurance needs to be more
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affordable think about it you're basically paying Insurance to deny you deny you yes they
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can they cover the uh Che checkups and whatnot and they're good with
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uh okay let me rephrase that they're mostly good with the checkups and dental
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cleanings and eye exams Etc
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but it's not all but not all insurance is created
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created equally you have some scam health insurance companies who try to
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scam you out of stuff then there's also ones that don't even cover a
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Band-Aid and I feel nervous growing
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getting not older but maybe I should say wiser grow
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wiser as a as a uh get WIS there because I'm thinking gee
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when I'm done College out of the house with from my moved out of the house with my
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parents how am I going to figure out any of this stuff because it's hard to trust
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anybody anymore it's oh well this person just sees you as statistics this company
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is just trying to save a couple of bucks this company it's not personalized anymore it's garb AG whoever came up
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with the system didn't I mean okay I'm sure they
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didn't think of how rigged it got over the years
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but it's done for it's gone it's
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and and here's what else needs to change there should be a limit to how
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many garbage kind of L suits that can happen in a month or
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year uh so let me give you an example so there was a recent
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lawsuit uh against Verizon I think either this year or last
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year I think it was this year beginning of this year and the lost to not to get
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all the nitty-gritty parts of it basically at by the end of the lawsuit
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the only people who won was the lawyers because Verizon then bumped up people's
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phone bills just to make the money back that they lost and I kind of want to
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just like say to those lawyers and like that that that didn't help anybody
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because you just made the prices go up even higher so thanks a lot I hope they
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were on Verizon too and I because that would be very very good [Music]
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karma and then doctors should be able to spend more time with their patients to help them better understand their
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conditions so for example you know sometimes when you see a new doctor they might spend maybe two minutes with you
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maybe five if you're lucky because then they have to go to the next patient to the next patient to the next patient and
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I'm just going to throw around a number they might have to see like 500 patients in the day just
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do meet they Cota okay maybe it's not 500 but like I said random
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number and like you know people who
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are on the autism spectrum or some other kind of extra
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challenges we tend to We tend to need more time to digest the
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information understand the information how how to process information we might
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ask you 100 plus questions to understand what we what we have what the condition
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or whatever it is and it's going to take some time
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maybe it probably won't take an hour but it might take 30 minutes so be ready but
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unfortunately not all doctors can not all doctors can spend 30 minutes because
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they had to meet that quota thanks to our system and because of our amazing
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system all of our uh doctors all the doctors out there are burnt out and and
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shortage and shortage of staffed Etc or short on staff I should say my
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apologies and there needs to be special times specialy times of insurance for
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those with extra challenges they should understand each person's unique challenges so for
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instance because of my neck or if you want to
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say uh let's say uh let's use my neck example again
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if the MRI has been outdated for years and years and years I should have to go
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through 40 to six weeks of physical therapy because just because of the norm
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you know I don't like to the Norm you know what Norm stands for nothing normal
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but there's no such as the normal for when it comes with people with extra challenges this is our
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Norm our Norm is literally we we have to get routine
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checkups we have to be able to be you have to get routine checkups we have to
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get uh routine care routine tests but insurance want
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you go play uh some kind of cruel game yet to jump through hoops and
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ladders I don't have any hope for the system it's it's done and you and I
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blame my leaders because while they're sitting up behind the pedestals here and
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and they get their private on care well it feels like and
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but you know while scheduling at my MRI I got two choices of what location one
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one location was booked out until July and the other one's booked out till late May I'm like
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crap and it's like this shouldn't be this difficult but it is and I tell you what Pennsylvania is literally the worst
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state to practice medicine for any kind of
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doctor and I'm sure you probably have I don't know what it's like in other state
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but it's probably maybe just as worst or maybe or I mean just as bad or even
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worse so what the hell care should look like for those with extra
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challenges now I want you to picture this close your eyes and picture
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this I want a system where all the all the doctors all the specialty care
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doctors in one place there for example think of the Children's Hospital of
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Philadelphia uh when I ever I had uh
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three when I was going to uh when I was in Children's Hospital of Philadelphia I when I needed my special
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care care doctors they were there they might be on different floors but stuff
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just worked people went up to go see the doctor and they bring the information
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back down Etc it just worked like a well oiled machine and people forget that when
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people grow out of the system they're stuck in this other crap system they and
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people are like we're making healthc care more affordable no you're not it's
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still as high as crap it's it's garbage
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and and and
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on my next point I and here's another thing I want you to picture doctors spend extra time listening to the
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patients concerns and answering their questions yes it might be might get a little tedious because of Plenty 100
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questions but you know if we need the support we need the support and we want
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to know what's going on with with our bodies Etc or our health conditions Etc
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and instead of treating me like like another statistic
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like it's a drive-thru of McDonald's or Burger King or whatever fast food restaurant you want to go to or think of
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in this example but you know it's like boom boom boom in out come on go go go go go go go
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quick quick quick quick quick gosh darn it and then everyone's on the same page
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wouldn't that be great you know people can be able to see all your medical records in one place same thing with
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insurance everybody would be on the same exact page it would be a much beautiful
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thing then you don't have to call this do dude to go figure this out because
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what it looks like at the moment you have to go call this do D to get this you have to call this person to go get
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this test you have to go get this person to do this test it's a big maze of and
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it's a big cluster and I'm gonna keep that PG because I could say a lot
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worse and and there' be only one Portal app I've had two portal apps on my phone
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as of right now so far and one doesn't even let me schedule
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appointment in the app and the other one let me schedule appointment and I like
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why can't there just be one p portal so everyone's on the same page there's no
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more oh well you have to use this portal because of this doctor this portal this
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doctor and then you have to get have to sign 600 records to get your records to
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be over this portal it's a nightmare and
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then and then there will be no more jumping through hoops to get certain tests that you need example like my MRI
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there should be like a if I was asking for something every month or two months
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that's one thing but something back in 2013 that's been out of
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date uh that's a Nob brainer at least something someone
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logical like me now I'm GNA say this to you if the
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Health Care system does not change will remain dangerous for those with extra
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challenges so the Health Care system can be dangerous for those who have extra
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challenges or just about or just anyone
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period because the Health Care Systems buil terribly and hard to navigate people tend to put stuff off like for
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instance I it I hav't uh seek
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uh getting an MRI in many years because I've seen I've heard how bad the system
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through my parents when I was growing up and I was still on their health insurance and then when I got into my
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own it became a big cluster and I don't know how my parents did it because I
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don't have any patience I truly admit that I don't have any patience whatsoever I don't have patience for
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stupid and this is stupid it seems like a l iCal fix and like well gee how can
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we get everybody on the same page but we keep doing the same stupid stuff over
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and over again and I'm like I blame my leaders that you know
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they're out just pretending to fix stuff and pretending to do this but they but
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it hasn't gotten better and I'm tired of people's running on we're going to go fix this you haven't fixed squat in at
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all you haven't done it no one has touched this system no one's tried to
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change it for the better it's the same crap over and over and over again it's on the hamster
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wheel and without the proper care we will no longer live think about that for
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second without the proper care we will no longer live just let that sink in with you for
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a little bit so
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now here's what the Health Care System should looking towards the future and
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here's what needs to change the healthcare needs to be more affordable everyone needs to be on the
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same page in including health insurance and enough with the games and
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jumping through hoops just to get the care just to get the care that everyone needs the one siiz F the one size
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and finally the one siiz fitall model needs to go it does not work it hasn't
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worked and it hasn't worked in special education and it does not work period in
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healthcare oh thanks Jimmy you know it's really there are really important topics
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that you brought up right there and uh insurance and Health Care can be so it
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feels so divisive almost that you you go to a place you need another place to go
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to a place to get a referral to go to another place and it's like no no why
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can't we simplify this and I think I said that you know so many of our systems aren't created to support our
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community and it's something we do need help and we do need work so thanks for showing that to us and we do need
30:00
Simplicity how do you feel about that Mia and I'm sure you've had the same
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challenges with with your life oh yeah he's he's absolutely right it's just one
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thing after another um and trying to get the care and you just kind of feel you
30:17
sometimes feel isolated and or you can't afford it so now you're got you almost got to choose what do I choose do I you
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know food on the table but this kid needs medicine I mean it it goes it's like that and so yeah and it's very hard
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it's also very hard um like Jimmy said when they don't understand and they can't understand what's going on and you
30:37
need to be patient and go through the process and so um I completely I I it
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was it yeah sad it was sad for me to listen because I I completely understand yeah yeah and if you don't mind me
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saying real quick I actually uh I actually been uh I
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wrote to my state representative to even look into this because it's like this is
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completely baloney and it's like if you want to be in the system uh be charge of the state you got to fix it it's garbage
31:09
absolutely that is one of the steps Jimmy that was absolutely you're right to start writing to Representatives you're absolutely right I went to the
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attorney general I even went to the governor and it's like I ruffled some feathers at my health insurance too it's
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like perfect it's all com into play torture me I'll torture you back I'm
31:27
kidding but [Laughter] well sometimes we have to be that
31:32
squeaky wheel so that we can get the changes made that we need and I agree with that yeah I should just really just
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make a take recorder of myself and just play to the leaders and be just be on on
31:45
replay over and over and over again you just take this recording and and go give it to them there you go I should I sent
31:52
to my health insurance so much yeah right you'll have that ability after you
31:59
get this replay um for sure Jimmy thank you for bringing up so many
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wonderful uh you know insights for people to think about the Health Care
32:10
System the insurance system and ways that we can create a little bit more
32:15
Simplicity in our lives and maybe like you said apps that
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are cover more of a a broad you know broad things than everything so
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Niche and small and fits into every little tiny box everywhere so yeah
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that's such an interesting way to look at it and I'm so glad because I think that what a wonderful variety of topics
32:43
yes in our Summit to be able to cover you know nobody's really talked about how uh the Health Care system and you
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know we've kind of talked about like the uh unfairness of future teller doctors
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who tell our f futures for our children that they they have no right to do but
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um but also to teach uh the doctors the nurses the service providers the
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insurance companies like wow what a big task to take
33:14
on well I don't take a small task maybe I should but