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?
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?