I have a kid with L3 Autism, and let me tell ya, each individual cost might be painful but workable but they add up fast
He started speech therapy in November, the only therapy office is in a smaller town 20 miles away. My wife, fortunately, was already not working so she is able to drive him to his twice a week appointments. They told us the cost would be about $90/month with our insurance. Not horrendous but our budget has been tight on one income. A month later I start seeing the bills hit our checking account, first one, then 2, 3, 4, 5, 6, etc. quickly draining our entire buffer in checking. I call up the therapy place and learn it doesn’t cost $100/month but $100/appointment. I say “that’s over $800 a month!” And they say “that’s why we bill per appointment and not per month!” Now, this is the cost until we hit the $2k individual deductible, except it’s already mid-December, I have to pay for the last month of appointments and I quickly calculate out that we won’t hit the deductible by the end of the year, and I’ll have to pay another $2k in Jan/Feb/March to reach the deductible when costs go down to only $19/appointment or about $250 per month
So I calculate it out, figure out we have enough in savings to pay for this if we completely drain it then pass nearly the entire tax return to this damn therapy place, and mind you, this is all happening during the 6-8 months it takes to process his Medicaid eligibility. So then they say “he needs a speech tablet” and refer me to a company where it costs $800. I look into it, it’s literally an iPad with an app loaded which has buttons to do speech synthesis using the iOS speech synthesis API. I identified that every app available either costs a horrendous amount up front or is a rediculous license cost per month. You no pay, your kid no longer has a voice and will probably act out more because they can’t communicate their needs.
While this is all going down and I’m watching my entire savings drain away, my financial goals get set back yet another 2 years or more, he starts escaping his crib at night and beating up his sister (including a couple of times throwing a lamp at her because he wanted it on and she wanted it off so she could sleep), because that’s how it goes with autistic kids sometimes. So I start looking into specialty beds that will act as a restraint. Y’know how much those cost? There’s a sketchy looking company that sells some that look like coffins for around $2-4k or there’s nicer ones starting at about $15k (and apparently some kids manage to completely ruin them within a year with their stimming!) so at this point I’m starting to slide into depression as I realize I’m not going to get to spend any money on fun stuff for several years while I pay for every fun new expense of having an L3 autistic kid, I saw my goals for my 30s quickly slide into my 40s or 50s.
Now the happy part! He ended up qualifying for Medicaid because for kids since they have no income they immediately qualify with an L3 Autism diagnosis. Medicaid fully paid for the therapy appointments, backdated by 3 months so it cost a couple thousand less than I had projected. I found an open source project for a web server which provides the exact same features as those $25/month speech tablet apps (and my plan was to learn Android packaging and turn it into an app to load onto a used Android tablet, a cost of about $100) and Medicaid ultimately bought the $800 tablet for him. My wife learned from a parent group on Facebook that you can get mosquito nets for like $30 on Amazon that will work as a restraint by simply putting a zip tie through the zipper so they can’t unzip it at night. He also got signed up for a special Medicaid expansion that exists in my state which covers all sorts of random expenses of having a disabled child, such as door alarms, fridge locks, cameras, a fence, etc. should your kid be a flight risk like mine was (we ended up not needing nearly as much from them but I’m happy the option exists at all!) ultimately I got insanely lucky with the timing of everything, and the chaos and expenses only ultimately set me back about 1 year on my financial goals. Oh also he ended up not using the speech tablet at all after we got it and started talking (and now is about caught up with his age level for speech!) so there’s that too.
Anyways the point is, someone can look at a $2k expense for specialized medical equipment and go “nah bro, that ain’t that expensive!” But that $2k is probably coming after lots of other big expenses that drain even a well-funded emergency fund, and of course one’s improved quality of life is gated behind that $2k expense that they’re going to struggle to afford. And that’s assuming the disability that put them in the market for this thing doesn’t affect their ability to work, which it almost definitely does! Every person with a disability has a story like mine of this industry that exists to extract money from Medicaid and when Medicaid wisens up to being overbilled for something and drops coverage for a given thing, the companies just offer financing and leave the prices just as sky high, because what else will you do but pay up?
Gee, would’ve been a shame if the people decide to take the means of productions from the rich snobs
This is going to be a very random comment. Apparently today as I was waking up, I muttered “Marx was right” to my husband who was awake and lying in bed. I have no recollection of this. I don’t know wtf I was dreaming about, but I love the clarity, lol.
This is a long way to say I agree with you.
Transcript:
on Tumblr:
ironbound-oberon: I have cochlear implants and I can only buy parts to fix or upgrade them from 1 corporation bc of tech exclusivity. Upgrades to get new processors for both ears cost $23k & insurance only covers 90% (and it’s “good” insurance). Cyberpunk dystopia is already here for the disabled. Fight for universal healthcare, fight against capitalism NOW.
dovewithscales: I want all the abled people reading this to go price check a power wheelchair.
I used to build wheelchairs… facts
all disability accomodation tech should be 100% free (gratis AND libre)
My wife recently got this wheelchair - https://lith-tech.com/shop/lith-tech-sc-x-smart-chair-folding-electric-wheelchair-multi-terrian-lightweight-powerchair/ - £2350
We just had a new front door fitted with a minimal threshold so she can come and go as she pleases.
This has been a life-changing purchase. The independence she didn’t realise she even wanted has been liberating. Hearing her go “I’m off out, see you later!” is mind-boggling after years of dependence on all travel outside the home.
We had a grant from the NHS for 80% the cost of the chair, and the new door was £1500. Worth every penny. I expect a US equivalent to be tens of thousands of dollars, likely completely inaccessible to us.
if anyone’s interested my sisters power chair with all-terrain wheels was 45k
Surely you can order them for cheaper now? You might have to wait another week or two for the post office to do their job now, as delivering a first class parcel that for generations prior did that task anywhere in the US in 2-3 business days with rare exceptions, has now degenerated into 7 days for just 1,000 miles, or longer.
But can’t you order one such unit from another country? Soon you might have to get on the dark web, and have them ship it to you disguised as something else from another country, by private carrier due to the aforementioned hobbling of the post office, done under a decades long assault on usps to privatize it, despite the Post being mandated in the Constitution, and operating from day one. They used to do banking accounts too, providing simple consumer banking accounts, free checking, that now are dominated by big banks.
I will always repost this article: Their Bionic Eyes Are Now Obsolete and Unsupported - Second Sight left users of its retinal implants in the dark
https://spectrum.ieee.org/bionic-eye-obsolete
“I remember exactly where I was: I was switching from the 6 train to the F train,” Campbell tells IEEE Spectrum. “I was about to go down the stairs, and all of a sudden I heard a little ‘beep, beep, beep’ sound.”
It wasn’t her phone battery running out. It was her Argus II retinal implant system powering down. The patches of light and dark that she’d been able to see with the implant’s help vanished.
all disability tech should be forced to be libre
all abandonware should be forced to be libre
YEAR OF THE LINUX EYES (Eye use Arch btw)
If it goes in your body or is required for normal human function, it should be open source.
Everything should be open source, but let’s start there.
Agreed.
At the very least, all design and code should be held in escrow, to be released immediately if the company stops maintaining it.
In theory, that’s part of what a patent is supposed to do: the design is filed with the patent office, and after the course of the patent has run out, other companies have the design and the legal right to make competing products. I kind of wonder if making software patentable could help the open source movement.
Software patents are very common and no, this has not helped the open source movement.
In the US at least, code itself cannot be patented. A means of accomplishing something with software can, but not the code itself. This means that all the patent office receives is a diagram of what the software is supposed to do, rather than its source code. Having the source code publicly-available could help the open-source movement.
Use the “black market” whenever possible, avoid any taxes possible, and so on.
Legally, of course! I think EVERY American should respect the law EXACTLY like our President(s), CEOs, and police et al. do, as in completely.
By completely I mean not at all. In Pac-Man, or whatever.
Hey, OP, can you pass this along to the OP-OP?
It’s an open source cochlear implant hearing aid as in the part that goes on to the actual physical implant.
Dovewithscales responding to the op highlighted should have told us what the power wheel chair costs. Why should we look it up, when they clearly already did and it’s the same effort for them to just post that. I don’t doubt it’s also insanely overvalued because we’ve decided to allow anticompetitive trusts run by private equity to maximize profit on treating the sick. To wring the life savings from the old for procedures that used to cost a modest reasonable sum, and to inflate health care premiums, itself a parasitical industry, to the point that a family on their own might pay 25,000/year or health insurance.
How are we not angry about this? Angrier. Is there really nothing we can do, when we haven’t tried all that much?
Care and progress for the disabled has always been an open door for corporations to test new technology on a truly captivated audience. The absurdly high costs and exclusivity is often how the public justifies to themselves that these companies couldn’t possibly have any malintent because the stakes are too high. They have no incentive to reduce costs, improve repairability, or even genuinely care about the patients or symptoms that they’re treating; that’s the inventor’s problem.
It also often involves ignoring us when we say what we need or want out of assistive devices. I’ve seen a lot of amputees write up essays on how artificial limbs are often designed for the wants of able people (cool technology, robotics, how similar it looks to a biological limb, etc), rather than the wants of the people wearing it (lightness, comfort, ease of use, etc). Robotics are heavy, and a lot of the robotic controls are done by flexing muscles in patterns which is inconvenient compared to a grasper hook. Meanwhile able people keep thinking that the goal should be robot strength arms like in a comic book, but a simple force body diagram will show that that just moves the point of discomfort and failure away from the prosthetic and onto the place it attaches to the body.
Designers with OEM parts: If you gotta replace your arm, might as well add a badass super-strong mech suit with guided missiles, just like in the movies.
Person who just wants to eat their soup before it gets cold: …
To me this mostly isn’t a universal healthcare issue, it’s a right to repair issue. Everyone that reads this should support both concepts.
medical equipment is probably one of those that need a technician to repair, cant really do it on your own.
It’s also a medical devices being expensive in general issue. If you build something and you want it to get cleared for medical use you need to test the shit out of it and get several kinds of certification. And you need to do it all over everytime you make any change whatsoever. This can easily take two years for every change, even if you just change something trivial.
All of this is to prevent another Therac-25. For the uninitiated: That was a radiotherapy device that, due to design flaws on several levels, could inadvertantly be turned into a literal death ray. Several patients died because of this. In the aftermath, the regulations for medical decides were tightened considerably.
That’s a major part of why medical devices are so insanely expensive. Much of what you’re paying for is a titanic amount of certification work.
Unfortunately, this also makes it harder to implement a right to repair for these. Few people want to figure out who is responsible when e.g. a CPAP device that someone repaired themselves fails. The current approach is to make it damn near impossible for the manufacturers to screw up but that’s a lot harder when the device can ever be in a configuration that hasn’t been extensively tested and certified.
I don’t buy the “testing makes it so expensive” rationale unless I see the actual source numbers. Every bicycle made in Europe, the US, or Taiwan goes through an extensive ISO-defined testing process that is every bit as rigorous as that of a hearing aid yet somehow they all arrive in shops with reasonable sticker prices, and they often have production runs with smaller numbers than those implants. Yes testing will obviously increase cost, but show me the paperwork for the process that brings a single hearing aid part to $23K. It doesn’t exist. The goldfish is merely growing to fill the bowl, and the bowl is private insurance.
it was a choclear implant, its likely is more complicated than a simple hearing aid.
The fact it makes everything expensive and proprietary is just an unfortunate side effect.
I think any company that is sunsetting a product with existing customers still using it should offer full refunds or a way to operate it without the company.
Cloud services have no incentive to continue operating unless they charge ‘rent’ as servers and maintenance is not free. However, if they choose to use proprietary ways to protect their IP, they should also have an obligation. If they choose to not have that obligation, they lose the IP and open source it.
Basic models: Starting around $1,200 to $2,000 for travel chairs.
Mid-range options: Typically between $2,500 and $5,000.
High-end models: Can exceed $10,000 for advanced features and customization.
Customized models: Prices can go up to $5,000+ for specialized needs.
should be $0
Governments should subsidize these things
and force the software to be libre
NotAWheelchair (owned by YouTuber Jerryrig Everything) sells custom models for 1,200 to $2,000. Not sure if the customization they offer is everything you meant, but they seem to be offering some competition to the market.
Seems pretty reasonable to me, not sure what their point was. The ear implants are crazy, wheelchairs aren’t.
Seems pretty reasonable to an able-bodied person who can pull an income. A ton of disabled people cannot, and US medicaid often has disgustingly low limits.
Yeah wheelchairs look to be around hearing aid prices by that, though with much more room on both ends (yeah I know you can get dirt cheap HAs that are the auditory equivalent of reading glasses, but they’re the auditory equivalent of reading glasses)
i don’t know anyone who needs a power chair who doesn’t need a customized one. try again.
wdym
My neighbor has one.
But do they need a customized one? Have you ever asked them?
