Dr. Bex
speaker
498 appearances
7 recordings
1 series
first heard Nov 2024
last heard Jun 2025
Dr. Bex’s voice in public audio — every appearance, attributed to the second.
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And so I think all of these counts get to the heart of if standard of care or if what is needed for this specific child with Ehlers-Danlos is seen differently by the parents and by the physicians taking care of her, how do you reach that joint decision-making?
And if the hospital or doctor is potentially going down the path of what they see the standard of care to be, or the hospital sees the standard of care to be, then how do you even play out one of, I think, one of these lawsuits in the sense of If we started from different points, can we ever kind of see it the same? And then the idea of this being a disability.
So I did look this up just so I could kind of speak a little bit to it. But Ehlers Danlos in and of itself is not in this blue book that the Social Security Administration puts out. for like standalone diagnoses that basically put you in the ability to be able to have like disability services. And so it is seen as a disability, but it is not in that book. It has to be Ehlers-Danlos plus.
So Ehlers-Danlos plus some like substantial functional impairment, inability to maintain walking or standing for long periods, chronic severe instability or pain, things that are actually interfering with your ability to, to work, your ability to, I think it says to perform, quote, substantial gainful activity.
So basically, does this diagnosis have enough of these other features to say that it would do that? And I know that's not really what these claims are saying, but the idea is they are claiming she does have a disability. So by that definition, she would meet those criteria. And then did the hospital, did the physicians consider
potentially withhold or discriminate against her in any way based on that disability. This is where one of the specifics comes up. The idea that they denied transfer to a facility that specializes in Ehlers-Danlos. I don't know what the specifics of that were. the use of an appropriate wheelchair, her use of her phone and her tablet were things that were mentioned.
And again, as a physician, I was thinking through this. If physical therapy evaluations are saying a child has the ability to walk and therefore we are working on them with that, We tend to opt for the least invasive and using maybe the other one as a backup or something like if it is needed, this can be a bit of a gray area.
If you send someone home with a walker or a wheelchair, it is very easy for that to become what they need and what they use. So often we put kind of timelines on things like, We will send you home with this, but you follow up in this long. And then we'll kind of keep reassessing whether this need continues. The hard part is you can buy these things on Amazon now or anywhere.
So even if we don't order a wheelchair, they can still get a wheelchair. So again, this is a slippery slope that as a physician, I can read my own way based on my own experience. But this question of the appropriate wheelchair is, Is was it the physicians thought one thing was appropriate and the family thought another? Is that grounds for, you know, a lawsuit?
Or is that discrimination based on the disability? I think these counts all just kind of keep bringing up these things. And I did look up in Ehlers-Danlos. at least from the data we have, it is a small percentage of people with Ehlers-Danlos and usually on an as-needed basis that a wheelchair is needed. So you're going to spend the day at Disney.
Maybe that may be a long day and you may need the wheelchair. So it's that as-needed basis and then still a very small percentage. So I don't know what your thoughts are.
Yes, at least from the point of view of these complaints, it was while she was underrated children's that they're claiming she was, you know, discriminated against.
You know, it's kind of the reading between the lines. But I think also I've thought about the whole discrepancy in health care where, you know, a family can take up a GoFundMe to get the fancier, more motorized wheelchair. But I have children on.
You know, the CMS plan, which is like Children's Medical Services for complex children, children who live in, you know, maybe nursing facilities and things like that, who can't even get the very basic wheelchair, who need it. And so I do start to think bigger picture with some of this stuff that it is sometimes, like I said, ordering it on Amazon or taking up a fund for something.
It doesn't really matter what. the doctors say. And this is a scary piece of the world to me as well, because I've told you time and time again, my goal with any child is, is getting to be a kid and getting to live life to the fullest. And like, if you want to play baseball, let's find out a way you can play baseball. Like if that's your dream, you know what I mean? Like what could we do?
Or really, is there no way that it's safe because of your condition? And I think, um, That's that idea of like where Make-A-Wish came from, right? This idea of doing that thing that maybe you never would have gotten that chance to do. Like we want them to feel like kids and be kids. And I think sometimes when the two concepts go very awry, that is a tough decision as a physician.
Like if I am writing an order for equipment It is something that based on the evaluation we've done, we have determined is medically necessary.
Writing it because a family wants it or I don't know, that starts to cross into, you know, unethical territory for me, at least assuming I am looking at the whole picture and I'm listening to all sides and I'm seeing what I'm supposed to see as a physician.
But it is a slippery slope and I think we've seen it in these cases and that's why, you know, these things kind of jumped out at me, I think specifically.
And it goes into the education system. It goes into every aspect of this. Like there are kids, I've talked to families about getting like a 504 plan for a child with true disability and how many calls a family has to make and how many meetings and how many things.
Showing 161–180 of 498 · page 9 of 25
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