Manage episode 303018942 series 2969801
Disabled Lives Matter Season 1, Episode 30 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Valerie Ghant
Intro: [Music playing in background] Disabled Lives Matter... here we go!
Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!
Nadine Vogel: Hello everyone and welcome to today's episode of disabled lives matter I am nadine vogel your co host along with norma.
NORMA STANLEY: hi everybody great to be back.
Nadine Vogel: I know I know I missed you guys in the last few I covid got me down.
NORMA STANLEY: yeah but we're glad you're back yes.
Nadine Vogel: It will not keep me out that's for sure.
Nadine Vogel: So today norma we're joined by someone, I think that you know Valerie Ghant and Valerie is someone who came to this community by way of I believe Valerie and accident of your daughter is is that correct.
valerie ghant: Yes, ma'am yes ma'am my daughter, unfortunately, was in a hit and run accident.
valerie ghant: She sustained a traumatic brain injury behind it.
Nadine Vogel: Oh, my goodness, I am so sorry how old was she when this took place.
valerie ghant: She was only 19 sophomore in college at Columbus State University at the time.
Nadine Vogel: So, so you know, obviously norma and I are special needs moms um but, but not in that way right, you know our kids were born with disabilities and I think that when it's the result of an accident, it just as a whole nother level of trauma.
Nadine Vogel: So norma don't you think.
NORMA STANLEY: Absolutely, I think that that's a whole nother level of trying to adjust to something that you're not used to we our children are born this way, so we.
NORMA STANLEY: You know, go into we go into it, but to have it happen suddenly I can't even imagine, so you said that your daughter was in college and had the accident or was hit by a car and then she was never the same from that tell us of your experience when it first happened.
valerie ghant: well.
valerie ghant: Really when it first happened just unbelievable because it was so you know abruptly.
valerie ghant: Like I mentioned, she was in school at Columbus state sophomore just had graduated that may before the accident and.
valerie ghant: When it first took place, I was just you know overwhelmed as any mom would be with you know emotion, it was a hit and run, so the person that actually hit her you know they you know they fled the scene.
valerie ghant: So it took months.
valerie ghant: Before we actually was able to track them down.
Nadine Vogel: Oh, you did track them down.
valerie ghant: Yes, the Marshal the federal agent the marshals they got involved, and they were able to apprehend him about probably about four months after the accident, but that was just kind of you know it's just a lot of things going on in it at that time so like I said very.
valerie ghant: emotional emotional a lot of trauma, as you say just a lot of trauma involved.
Nadine Vogel: So what so what kind of I mean, I assume, she had the accident went into the hospital was in the hospital for a long time, rehab.
valerie ghant: It happen, a fourth of July weekend so fourth of July and just you know very memorable for me in that way, and that was in July, and she was in the hospital until December we didn't get out.
valerie ghant: And it probably was about two years before things just slow down, because at the time the injury was so.
valerie ghant: catastrophic she had a trach and just all these other things that we're we're new and then she had.
valerie ghant: A shunt also placed so with that it'll be a lot of hospitalization after the accident and sometimes we're in the hospital and as disability moms you guys may know you go in the hospital sometimes that's 30-45 days easily first.
valerie ghant: You know.
valerie ghant: I stay away from that place.
valerie ghant: As much as.
Nadine Vogel: I know I spent I spent three months with my older daughter when she was born, I remember, but nothing, nothing compared to two years, so so on, so you said she had a traumatic brain injury, so I guess you had a bleed or something which is why they have to shunt.
valerie ghant: Yes, ma'am she had a diffused head injury at the time I wasn't aware, you know, I was so overwhelmed on what should have taken place, as far as you know, with this type of impact this type of injury.
valerie ghant: She should have been stabilized and sent to a place that specialize in brain injury.
valerie ghant: That can handle any you know offset or anything that may occur, and you know that didn't happen at that time, so in that place would have been sheltered for us because it happened down in Columbus Georgia, as I mentioned, she was a student at Columbus State University at the time.
Nadine Vogel: A grade so oh my gosh so many issues so.
Nadine Vogel: Well let's let's go back into talk about what the different kinds of injuries were, but I do want to come back to this issue of not being brought to the right location, I think that this is.
Nadine Vogel: A huge issue in so many ways, on so you said she had a trade to breathe, I guess you can read on our own.
valerie ghant: Well, actually.
valerie ghant: She could she will stabilize she could I was able to take the trach out.
valerie ghant: That was a fight with me with doctors, because what i'm learning in the medical industry, sometimes even you know say something like cancer right your diagnosis not really you know, an injury.
valerie ghant: is just a certain format or protocol that they are trained to use, you know and sometimes you can get caught up with those things, and that becomes a whole nother issue you know.
Nadine Vogel: I you know I have and I don't know where, but you have as well experience you know I had doctor the wanted to trach my older daughter, and I said you'll have to cut my throat to get.
Nadine Vogel: to hers, you know, so I remember those things, all too well and.
NORMA STANLEY: And I don't know why, they don't listen to the parents, I mean, I know that we have medical professionals, but we know our children, we know.
NORMA STANLEY: What they feeling with and, for some reason, these doctors don't really want to listen to what we have to say.
Nadine Vogel: You know that's why I started disability mama so many years ago right, it could, and you know Valerie you've seen it but our logo for disability mom is a hot pink boxing glove.
valerie ghant: Oh God.
Nadine Vogel: And it's like we're gonna fight today right to get what we need for our kids.
valerie ghant: yeah but it becomes so overwhelming and so just so i'm so glad you ladies, you know, created a platform to you know, to discuss issues of this magnitude, because this well need it, you know.
Nadine Vogel: So so let's talk about you ask them to send her to shepherd to the right location for traumatic brain injury and how did they respond.
valerie ghant: Oh, my God, so when it first happened right, you know i'm just overwhelmed i'm like what just happened right my mind is so caught up into that so I wasn't.
valerie ghant: You know I don't blame myself, but I just wasn't thinking clearly because all they were telling me was hey you know they were telling me she was gonna die that was just it she she's gonna die she's not.
valerie ghant: gonna make it and she's gonna die so and I had a praying Community boy I can you know I remember, just like it was yesterday all too well, but.
valerie ghant: It was probably about.
valerie ghant: Maybe 45-60 days and I started getting angry like you know what's going on here a liaison from shepherd Center was there, and she came down, and they have a program that's called.
valerie ghant: What is it disorderly.
valerie ghant: it's like for people that are in a minimal conscious state or just had an injury and they're like in a coma.
valerie ghant: I don't want to quote the name wrong but um I think disorders of consciousness, or something of that something like that, and I wanted her you know I asked them well can she get a bed, you know what you know, a charity bed or something can can we.
valerie ghant: You know shepherd and the only thing that the medical that they offer my daughter at 19 years of age right because she still has aged fighting for her, if nothing else.
valerie ghant: wants to take her to a nursing facility and, later on, as I met other moms on my you know for my brain injury family that's what I like to call it now, you know I learned the things that should have happened way after you know.
valerie ghant: Asia's accident, basically, how you know what should have necessarily took place and it's a lot of is some factors that I, you know know that you know, played a part in that you know I just I don't I don't know why, especially we're being so young.
valerie ghant: And it's.
valerie ghant: You know, different accidents it's people that have been ran over by cars and different things, and you know that's that's you know that's the norm stabilize them and get them to a place that specialize in that type of injury and normally that's brain injury or spinal cord injury.
Nadine Vogel: Right well, so we need to take a really short break when we come back, I want to explore that further or explore what those factors were.
Nadine Vogel: You know why why, why do you think you know they didn't do what they needed to do, and I suspect, I have some ideas, but I want to hear from you so let's go on a very quick break.
Nadine Vogel: And, ladies and gentlemen, don't leave us, we will be back with Valerie Ghant and hearing about this unfortunate story about her daughter.
Voiceover: And now it's time for a commercial break.
[COMMERCIAL] Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.
Voiceover: And now back to our show.
Nadine Vogel: Hello everyone, this is medium vogel want to welcome you back to today's episode of disabled lives matter I am with my fabulous co host normal Stanley norma stanley, say hey.
NORMA STANLEY: Hi guys.
NORMA STANLEY: We're having a conversation here.
Nadine Vogel: yeah Valerie Thank you so much for for your willingness to share such a personal story and and what has happened now five years into it with your daughter's car accident.
Nadine Vogel: Before we before we took a break, one of the things we ended on was, you know that that it sounds like your daughter didn't really get.
Nadine Vogel: That necessarily the right care of that she needed right off the BAT although you were asking for it.
Nadine Vogel: And i'm just wondering if if you have some thoughts as to what those barriers were or factors to do with why she didn't get to a head injury expert, you know why she didn't get moved any thoughts on that.
valerie ghant: Well, in health care alone and it's just it's.
valerie ghant: it's Sad to say.
valerie ghant: But economical status plays a big role and race is a factor as well.
valerie ghant: You know at at not using the race car but i'm living it i've lived it, so I have to bear witness to that you know those were definitely factors that were involved, my daughter actually the insurance that January Asia turned 19 and the insurance that I had.
valerie ghant: dropped her because, when we were first their I guess the insurance Maybe it was showing up in the system.
valerie ghant: And I even had the neurosurgeon going from telling me her father that he could do xyz to he can't do anything.
valerie ghant: And I mean we you know we went back and forth and i'm like you just told us, you know you could you know perform this or take these type of measures, and now you know all of that just kind of changed in in later on in thought i'm just saying I guess that had to play a role in it.
valerie ghant: But they figured out that the insurance that we had it wasn't good they had dropped her.
Nadine Vogel: Oh, my gosh. Oh, my gosh.
Nadine Vogel: I you know I have this ongoing issue norma you and I have talked about it, we talked about here at springboard just you know we've got to change healthcare.
Nadine Vogel: In this country absolutely I mean disability or not, we have just got to change health care, I have, I have just never seen some of the things that go on, and then I.
Nadine Vogel: I do agree Valerie you know, then we add raised or we add socio economic status and it just I sometimes I wonder what country were in.
Nadine Vogel: yeah right norma I mean.
NORMA STANLEY: Absolutely.
Nadine Vogel: On a regular basis and it's just i'm in all I know, and I don't think it's getting better I think it's getting worse.
NORMA STANLEY: it is absolutely getting worse, it absolutely is getting worse.
NORMA STANLEY: Um hm.. go ahead.
valerie ghant: yeah one of the bigger barriers is cost, just like you know with my daughter, she has a head injury and.
valerie ghant: A lot of therapy, that is offered that can help you know technology Advanced therapy, they do not deal with the insurance at all, because I guess it's such a headache they're not going to approve it.
valerie ghant: I had a personal experience, and it really doesn't matter, even if it's private insurance, we have had blue cross Blue Shield and it was a doctor, I took my daughter, and we went around I went everywhere, but.
valerie ghant: it's important immediately after a big injury, you know, spinal cord brain injury things like that that a lot of the things you take certain measures to kind of preserve certain things.
valerie ghant: from happening that tend to happen so that's why it's very important to get to a specialized facility.
valerie ghant: And so later on down the road.
valerie ghant: You know, once I realized certain things I still went on a rant as a mom and you guys, you know you'll know I drove all to Houston I you know I drove different places.
valerie ghant: But it's very hard, once you get a doctor working on a person and things don't take place to get some kind of recourse because that's a big big protected territory if you know what I mean.
NORMA STANLEY: Just like the police.
valerie ghant: yeah, and so we you know we went to we went to Houston and there was a doctor there she even she was trying to get Asia, maybe then it was probably.
valerie ghant: About two years after the accident.
valerie ghant: And she was trying to get her into TIRR Harmon Memorial it's down in Houston Texas it's probably known as one of the second or third best rehabs and she was trying to get her in there kind of late.
valerie ghant: But blue cross and Blue Shield you know you have to have something like you, meaning, you have to get admitted or something after a big injury to even try to.
valerie ghant: seek some help if that makes sense because that's how these log and different things are set up, so we had a shunt revision there and.
valerie ghant: i'm not sure if you know much about it but that's the procedure we had, and she was trying to you know fight to get Asia in there.
valerie ghant: And she was just even having the conversation how you know i'm not just saying this is facts behind it, a lot of African American or minority when something happens, they are not offer, they are not, they do not receive the proper rehab for some reason.
valerie ghant: So I just want you know, this is not an opinionated thing you know what I mean.
valerie ghant: They don't and My other point is, we had a private insurance, along with medi medicare.
valerie ghant: I think i'm saying that right not medicaid because you have to get that one, two years after the injury, but we at least have both of those and my point is with the private insurance, they were fighting worse.
valerie ghant: They would not approve her to go to rehab I mean it just went back I filed an appeal and she couldn't keep holding us because you know it's about it's a monetary thing.
valerie ghant: In the hospital to get to the rehab because the insurance will not approve it, you know, so it was just.
Norma Stanley: Wow.
valerie ghant: It was just horrible.
Nadine Vogel: You know, when insurance companies say they don't make medical decisions, but when they do things like that they are making medical decisions they are altering the course of our kids lives or our lives or whoever, you know is is involved and it's just something that.
Nadine Vogel: Ugh.. it's you know you put the knife in and then you turn it so tell me tell me value, today, you know how has this changed your lives how's things going today.
valerie ghant: um well.
valerie ghant: Even at this point i'm trying to understand and adapt to the new norm.
valerie ghant: Hopefully, I mean and I guess, I asked myself some days, what is the new norm.
valerie ghant: You know, we just have a different way of life at this point i'm trying to modify my house at home, where it's A-D-A accessible.
valerie ghant: And you know that's a fight another barrier or a loophole i'm trying to jump through We live in a plan Development Community, and we have an Hoa and I find myself fighting to do that, and my daughter has a disability it's it's insane.
valerie ghant: crazy yeah.
NORMA STANLEY: yeah and your daughter is in need now. of a standing wheelchair that's something that you can help look at this point, and you need some assistance and getting that because that's a very expensive proposition tell us about what you're trying to get done
valerie ghant: Yes, ma'am i'm trying to get Asia and I go back in my mind and say miss miss norma why wouldn't they offer a 19 year old back then, and you know wheelchair that can stand up, because at that point, you know it's a fresh injury, it could offset some of the things that are.
valerie ghant: happening, when a person is not moving physically.
valerie ghant: Like we are day to day.
valerie ghant: But you know they didn't so now i'm trying to get this standing wheelchair, the cost of the wheelchair is about $40,000.
valerie ghant: After fighting for Oh, I think we went to a seating clinic at shepherd back in November of last year it's almost November again.
valerie ghant: They finally approved it, most of it, but they left a $10,000 balance saying I guess it's not mandatory, that she stands up, even though it will offset other things that take place with by you not standing or being physical.
valerie ghant: You know, physically moving around because you're going to deteriorate, eventually, and I don't know if that's what you know I hate to say it, that they you know, not just for Asia, but with people in this population so yeah it's a.
NORMA STANLEY: So you
NORMA STANLEY: you have a gofundme you're trying to create tell us about that
valerie ghant: I was trying to create a gofundme and efforts for Asia to get some rehabilitation, because I feel that she hasn't.
valerie ghant: She hasn't had a fair fight I don't feel like she's at her baseline when she returned to that bright 19 year old i'm trusting and believing God I choose to you know not to believe anything but that but besides that if she if she doesn't This could help her so much preserve.
valerie ghant: preserve her health, because if you're not active and moving around.
valerie ghant: you're going to deteriorate, eventually, you know that things are going to start to happen, but this wheelchair is good because it can stand her up like a standard up throughout the day, even if it's only for 10 or 15 minutes every two hours so.
valerie ghant: It helps in that way with her overall well being.
Nadine Vogel: yeah absolutely I you know I never understood this, you know it's not like you said there's known medical issues if someone you know, is in bed all the time we're in a wheelchair.
Nadine Vogel: And so, if we can eliminate some of those you know it's like pay me now or pay me later because if they don't pay for the wheelchair now they don't pay what's needed then there's going to have to cover other.
Nadine Vogel: expenses later like I I never understood that but.
valerie ghant: yeah you know with that it could mean.
valerie ghant: Less E-R visit us, you know what.
valerie ghant: i'm saying big medical stays because you know if you're not moving around you have situations with your.
valerie ghant: With your lungs and you know multiple atrophy is a big thing and it, you know it hurts and cause of the problem, so so i'm like what's really going on here that's why I have to say, are you, you know, hoping for the you know ultimate for this population what what is what is going on.
Nadine Vogel: Right, right.
Nadine Vogel: And, and what I would also say is in terms of your home and the Association on go go on to online and take a look for the state of Georgia, the Department of housing.
Nadine Vogel: It will cover things for private housing as well, relative to disability.
valerie ghant: Okay, thank you, I have looked at the fair housing and unfortunately I think i'm going to have to get them involved, just to make my home A-D-A accessible, I mean it's crazy it sounds crazy, but it is crazy.
Nadine Vogel: yeah. When you have an association.
Nadine Vogel: It takes on a whole new because the associations can decide really what they want to do, but they can't overrule A-D-A, so I would contact them and have them help you, they should be able to do that.
valerie ghant: Thank you so much for sharing.
Nadine Vogel: yeah absolutely I just.
Nadine Vogel: Oh, my goodness norma.
NORMA STANLEY: Well, I just want to turn to be able to share with the listeners um you know if they choose to.
NORMA STANLEY: If they have resources that can be of assistance will be they can go to get information about you know what you're trying to do to help your daughter.
Nadine Vogel: And I also want to you know folks to hear that these barriers that you've encountered are real, you know.
NORMA STANLEY: There's a lot of people.
Nadine Vogel: These are not stories you hear about you know you're a real person your daughter is a real person you're experiencing this in a real town in a real hospital.
Nadine Vogel: Like We need people to understand this, that this is not made up this is what's going on you're just one person think about how many times a day, every day, this is happening.
Nadine Vogel: in hospitals in rehabs and with insurance all across the country so so I just want to thank you so much Valerie for being willing to share your story.
Nadine Vogel: And you know from the bottom of my heart and norma, we wish you all the best and your daughter, and to be able to recover in as much as and whatever capacity, she has the ability to.
valerie ghant: Thank you.
NORMA STANLEY: share the information with.
NORMA STANLEY: Share the information about it or give them where they eed to go to hel if they can.
valerie ghant: Well, I actually created a gofundme for Asia i'll leave my contact number also you can find that link on my Facebook page and that's Valerie Ghant and Asia's Facebook page is Asia Almez, that's A-S-A-I A-L-M-E-Z.
valerie ghant: And my contact number is 706-332-1666 again it's 706-332-1666 it's a gofundme link that has been created we're trying to purchase this wheelchair.
valerie ghant: it's from new motion and her name is Asia Hoskins even if someone if they can't contact me i'm you know direct you know contact, however i'm just trying to be a voice for my daughter, right now, because she can't you know, be a voice for herself and try to get her.
valerie ghant: back to the best capacity as she stated as possible because, again I know she's not her bass line this young lady has so much fight in her.
valerie ghant: And I just don't want to sit around and watch her deteriorate, because the cost again that is affiliated with some of these things is just.
valerie ghant: astronomical for any you know even for a middle class family, the cost is just you know you would be bankrupt out of your home truck trying to seek you know seek help.
Nadine Vogel: yep absolutely well Valerie Thank you Thank you so much, once again, for joining us we're going to wish you all the best.
Nadine Vogel: This is nadine vogel and norma stanley signing off from another episode of disabled lives matter remember we're more than a podcast we are a movement, and we hope you will join that movement see you next time bye bye everybody.
NORMA STANLEY: bye bye. Be blessed.
valerie ghant: Thank you.
Nadine Vogel: Thank you.
Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!
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