autism - questions about financial impact on family

[ktgrok]

The story I'm writing includes a single mother of a boy with autism. My oldest is on the spectrum, but as they say, if you've met one kid with autism, you've met one kid with autism. I imagine that goes for the financial part too. And although I have several friends with kids on the spectrum I'm not sure how willing they'd be to open up their finances to me - hoping the anonymous nature of the internet means I can get some info here. 

Basically, talk to me about what you have spent. either over time, or per year, or in the beginning, or whatever. I'm trying to create a picture of what this young mom's financial situation looks like. Oh, and she has Tricare, so if anyone has any idea if Tri-care covers anything autism related (or SPD, etc) that would be good too. 

So, things like diagnosis, ongoing therapy, etc. What have they cost you, or even what are you doing without because you can't afford it?

Thank you!!!

[Katy]

This seems too personal to post on a public board, but I'll DM you.

[Carrie12345]

I wouldn't know where to start with specifics. I had incredible coverage when ds was small. Today, basic therapies would max my OOP, which is $6 or 7,000 for one person. So I guess I'd get ALL the therapies, though that would increase gas spending.

[AmandaVT]

Tricare covers outpatient mental health counseling - typically, the counselor will get approval for 12 visits (sometimes it's 8 visits) and then will need to get reapproval every 12 (or ? visits. It's a pretty simple process, just faxing Tricare to let them know that the client is still receiving services.

[lavender's green]

Insurance covered most of the official autism stuff, and our HSA took care of the rest. I don't have the exact figures.

We're putting our Aspie in a Catholic school with an excellent autism program. It was that or watch him flounder in the public school ('cause I'm done trying to be Mommy and Teacher for him), because you have to prove your kid is failing before they'll get any help, and the help is pretty much just a bandaid. I was so, so impressed with all the little things this school does to help every student, autistic or not. We'll be paying the non-Catholic rate plus extra for the program.

I spent a decent amount on books and sensory gadgets, and a friend gave me a ton of stuff too. I'm in KonMari mode and getting rid of most of it, TBH. Turns out my kid already knows what he needs, sensory-wise, and I just need the one reference book for everything else. I wouldn't necessarily say it was a waste, because I learned a lot and those are books my library doesn't carry. I'd have been just fine with a lot less, though.

The year we spent a lot of time on diagnosis and therapies mostly cost me in time and emotion. It was grueling to get so many littles ready and out the door, breastfeed the newborn while chasing a toddler "runner" during appointments. It was so physically demanding that my c-section scar kept opening up, and I had no respite, no help. To people on the outside it looked like a few 30-60 minute appointments per week, no biggie, but for me it meant three mornings where I couldn't do anything else, because of getting-ready time, travel time, appointment time, and decompression time. 

[LucyStoner]

The absolute biggest cost of autism for us has been forgone income. Pretty much all of my income for 5ish years and lost advancement opportunities/raises for my husband.   We could choose money or time and we picked time.  My husband remained underemployed (working FT but below his skill level) for 10 years because we needed top shelf health insurance.  Even with top shelf health insurance, we still needed secondary insurance from the state.  

We've passed on some therapy options we couldn't afford but we have also spent, despite me being organized, very well informed and a full-time caregiver, months and years waiting for certain services not due to a lack of ability to pay or a lack of insurance but due to a lack of providers qualified to provide the services.  We had great in-home ABA.  The tech moved away and the agency has had us on their waiting list for closing in on 2 years now.  We've been on other lists that entire time as well and I call regularly to maintain list status 

The costs have been steep all around.  Happy to answer more specific questions.  I have two autistic sons.  

[Jean in Newcastle]

I think that so much depends on where they are on the spectrum.  We had had zero autism expenses outside of a neuropsych eval. to get him the college accommodations he needed (and those were only needed the first two quarters). 

[ktgrok]

Hmm..looking at TriCare it looks like if they had select or prime it's about $30 a visit for a copay, which could add up if you were doing multiple visits per week. Or, if using select and out of network, 25% of the cost, which would also get pricey. Not sure if those amounts apply to speech/ABA/OT/Etc

[wendyroo]

For us the financial aspects have been brutal...and that is with fairly good insurance.  (The numbers for my second son, who has ODD not ASD, are very similar, so we are hit with a double whammy out of pocket each year.)

Two evaluations: behavioral pediatrician + neuropsych = $10,000 (that is with insurance covering a minimal portion)

Therapies and social skill classes =  ~$6000 / year (insurance covers very little)

Reoccurring psych appointments + med checks = ~$1000 / year (this is where insurance helps the most)

Meds = ~$1000 / year (this fluctuates tremendously, and was exorbitant the years we were trialing a lot of different meds)

I estimate that in the last 5 years we have spent over $80,000 in mental health care for two children.  But in the end it all evens out because the federal government granted DS an access pass so he can visit all the national parks for free.  ?  That is the only government assistance we have received from any level of government. 

Wendy

[Lecka]

I have Tricare.  Try googling Autism Demonstration Project.  

[Lecka]

So.... for us, my son qualifies for ABA through the Autism Demonstration Project.  For a while we were paying $35/month, but we haven’t been paying that lately.  I don’t know if we’re going to get a bill at some point, or if they changed the policy.  

He qualifies for speech because it is on his IEP.  That would be free.  He would qualify for OT if it were on his IEP.  That would be free.  He doesn’t do either one privately right now.  He did when he was younger.  

There is more to the financial aspect but it’s hard to explain.  It gets more into overall life choices that have a financial component.  As far as paying for ABA, speech, and OT, it has been great for us.  

Edit:  as far as evaluations, he has had two.  The first was 4 hours with several people, and included a parent interview and ADOS.  And then this year he had an ADOS.  Those were both totally free to us.  

 

 

[Chris in VA]

1 hour ago, Jean in Newcastle said:

I think that so much depends on where they are on the spectrum.  We had had zero autism expenses outside of a neuropsych eval. to get him the college accommodations he needed (and those were only needed the first two quarters). 

We had zero except a neuropsych too, when he was 6.

[Lecka]

I’m just going to add, the Autism Demonstration Project is through ECHO.  With ECHO it does not work the same way as with other things (that aren’t ECHO).  This means ABA is not done the same way as speech and OT.  

He still has regular Tricare but then he is also enrolled in ECHO.  

I barely understand all this.  But you can google ECHO, lol.  

https://tricare.mil/ECHO/

As far as I know, we will lose access to this when my husband retires.  ECHO is like — some benefits that are only for active duty and not retirees.  I think.  I am really not sure. 

[Lecka]

Also just for more information, when my son was diagnosed, ABA was recommended for him, and I had a piece of paper saying ABA was recommended.  

Other parents go to get evaluated and get different recommendations made to them.  It’s not at all that everyone has ABA recommended.  

But that was what was recommended for my son.  

There are other recommendations that I have not gotten, so I don’t know about them first-hand.  

 

[Tap]

Like other have said the cost of Autism isn't black and white. 

The biggest expense is my lack of ability to change jobs. I have to have an employer who will work with my schedule and let me leave at the drop of a hat. I make $5,0000 less a year than I should just to stay when I know I have job security.  My employer underpays so they are always desperate for employees.  I am desperate to not get fired so I put up with the abuse and overworked conditions.

DD11 has been in therapy with either a BT and/or OT since she was 2yo.  Weekly for 4 years, bi-weekly for 5 years. Psychiatrist since she was 4yo about 8 times per year. at least a dozen evaluations or treatments per year  like neuropsych, massage/chiro for tics, PCP visits for evals and referrals, etc  In her 11 years of life, she has had close to 1,000 visits.   While most has been covered by insurance, I pay for some out of pocket.   Since her closest therapists it 5 miles away.....that is 10,000 miles of just driving to appointments LOL She went through a few year phase where she would get made and rip her clothes off. She once ripped Lands End corduroy pants off. I can't imagine how hard she had to pull to do that. LOL (BTW she loved them and the texture it wasn't the fabric, it was a behavior)

She has been on an average of 10 meds daily since she was 8yo.  Again most are covered but some are not. 

She uses swimming to replace her OT visits now, so of course those are not covered. My older kids always did sports too so that is fine, but she misses lots of classes due to rough days, and that I wouldn't have put up with from them. She also does rec league volleyball. She has some activity most nights of the school year, and 3 to 4 in the summer.

She went through 3 new bikes to find one that "felt right". We kept buying new ones because she needs the exercise.

She wears womens plus size clothes due to one med that makes her gain weight...I buy an entire new wardrobe every 3 to 4 months because she is still growing. She is 11 ad 5'7". She liked Nike so most of her clothes are Nike (due to fabric and the way the clothes feel) and that obviously isn't cheap.  I can't count the numbers of socks we have gone thought due to sensitivities. Last year I bought her 12 pair of socks in one particular brand because they fit and felt right to her. They were $75.  2 months later she couldn't wear them anymore because washing them made them feel wrong. 

She has gone through piles of sensory toys over the years. Expensive piles LOL The more common stuff like thinking putty, and body socks, but also more uncommon thinks like Kimochis.  $300 worth of stuffed animals that have to do with feelings and social situations.  We had a large Rainbow play structure put in for her to play on, but then she saw a spider a few months later and stopped playing any where near it.  Due to her size, we couldn't just buy a regular play structure, we needed on that could take adult sized, rough play. 

When I bought my car, I had to get one that could fit her in the back without her touching anyone else. She can't touch anyone or she will end up hurting them.  She is also very, very particular about car smells and hates to ride in any car that has a dusty smell (aka any car from before 2010). She will sometimes flat out refuse to ride in my sons car. (Leather, very clearn, Volvo S40). I have to replace his cabin filter on a regular basis so she will ride in it and even then it is iffy sometimes without Febreeze. 

The amount of damage she has done to our house and furniture is in the thousands. There were a dozen punched holes in  the walls in her bedroom alone. Kicked dents in living room and hallway walls, broken doors, broken furniture, electronics  etc.  

My health has taken a huge toll.  I have permanent back damage and a broken nose that didn't heal. which I will eventually need to have surgery on.  The level of stress I live in, is unfathomable to those in the outside world.  

All of us in her family have been in therapy due to her.  

The amount of daycare, or school items I have replaced after she damaged them, has easily hit $500, but probably closer to $1000.  

The food that we bought that she didn't eat (wasted money), or specialty items that I would buy, just to get her to eat. LOL 

The toys we bought that she didn't play with. The many times we have redecorated her bedroom to make it a calm place. The wasted money is easily one of the most common ways we have spent money.  LOL Things she liked for a minute and then move on the next week.

I can't have a regular sitter for her.  I pay $12 an hour and only get away with that low because it is my son. We get some help with her daycare bill through the state but it doesn't help when you can't find anyone willing to get hit, kicked, bit etc.  LOL  

It is a long story but she doesn't get any assistance thought he state aside from medical and some day care.  We pay for it all.

[gardenmom5]

we pay for a lot of stuff out of pocket, but I take him to a ND. costs vary depending on what dr appointments and tests he has.  there's a lot our insurance wouldn't cover, and we couldn't afford. - so we went without.  now our income is up - and instead of really enjoying it, we spend a lot on him. 

then pushing for formal diagnosis so we could get some services through the school district.  (who wants to do their own testing - and we're in a good district) 

- do include in your story that there are drs who are much less than sympathetic, think only the worst cases should be called asd - and treat parents like enabling idiots.    this same dr who refused to even do a well child check becasue he was afraid of standing on a scale. scales move.  (he was probably 10/11 before he'd willingly stand on it.)   he did refer to a OT who would have been entirely out of pocket.  at the time I couldn't afford even once a month.  

- this was the ped I'd gone to since 1dd was a newborn.  I fired him.

[kiwik]

A lot of the therapies you guys use don't exist where I am and I couldn't afford them anyway.  Ds9 does not have a diagnosis but has a lot of ASD traits.  My biggest expense is having to completely change jobs and homeschool him. He also only sleeps with melatonin which is prescription only and not as cheap as you get it.  Friends with diagnosed ASD kids spend a lot on tutoring, diagnosis and things like private swimming lessons etc.  

[Terabith]

We had Tricare.  My kid isn't autistic, but she had sensory processing disorder.  Tri-care actually was pretty good for us in terms of speech and occupational therapy.  I can't remember the details about copays, though.

[Pawz4me]

DS is 19, so most of our experience was a long time ago. He had private speech and occupational therapy for several years. Our insurance did cover it but I spent an absolute ton of time appealing an initial insurance denial to get the speech therapy covered (at that time his working diagnosis was apraxia). So we mostly had the cost of co-pays and gas going to/from twice weekly appointments. Fast forward a few years and he needed some physical therapy. Although that wasn't officially documented as being related to his autism diagnosis I think it was due to the low muscle tone that often accompanies the diagnosis. So co-pays and travel again. We had to pay a couple of thousand OOP for a MRI. Some sensory toys over the years. The official evaluation, although again for us that only involved co-pays for visits. When he was a teen anxiety became his major problem and he needed to be seen and treated for that. So medicine costs (co-pays), monthly appointments while his dosage was being adjusted and now twice yearly appointments for monitoring. He also had some therapy to give him some tools to help with the anxiety. That ran every other week for a few months (more co-pays). For a couple of years he attended weekly social skills classes. IIRC they were $200/month. We spent lots of money over the years on sunglasses and on clothes that didn't bother him (but of course everyone needs clothes anyway).

Note that now most states have enacted legislation that requires insurers doing business in that state to offer some coverage for autism. Just throwing that out for informational purposes. I have no idea how or if those laws affect TriCare.

[Teaching3bears]

Diapers - we spend over $5000/ year on diapers. OVer 15 years that has added up!  

Then there are wipes, mattress covers, tons of extra laundry. There are more pee-related expenses that are pretty bad but they are gross and I don't want to talk about them right now.

I might post more later but we definitely could have bought another house and more with what we spent on autism and that does not include me not working at all for 15 years and my husband limiting his work.

 

[ktgrok]

Thank you all!

Definitely her job is impacted, in that she works from home at nights while he sleeps doing software development for companies overseas, as that leaves her available to take him to appointments, care for him, etc. But a big part of the story is trying to get him better established in school so that she can get work done during the day while he is there, as being up all night is taking a toll on her. 

The bit about having to buy more expensive clothing for sensory reasons, having to replace them, etc is a big point, definitely going to include that! Swimming lessons, which would  be private so even more money, is a good idea - both for sensory/OT reasons and because the story takes place in Florida so it would be important to her that he can swim for safety reasons. 

Travel costs (gas/more reliable car/etc) for therapy is another thing I'll include, as she lives in a small town on a barrier island. Having to drive to the mainland for at least some of this appointments makes sense. 

[Lecka]

Childcare in summer might be a huge issue for her.  

[DawnM]

My son was in therapy, both group and individual, for years.  Many of the parents in our group therapy said they spent more than $10K per year between psychologists, psychiatrists, group therapy, etc.....

Our bill probably came to $10K some years, but our insurance was pretty good and covered quite a bit of it.   We paid about 25%-30% of that out of pocket.  Without insurance covering some, we would have had to do it very differently, and probably forgo quite a bit of the individual therapy.  In a lot of ways, we thought the group therapy helped him more than individual and it was much cheaper.  I think we paid $20 per group therapy hour vs. $60 per individual hour.

The biggest loss to us was that I stopped working.  I was carrying all of our health insurance for free (no cost to me for me or my family), and once I stopped working, that was an $800 added expense.  Then the loss of income was huge.  And the loss of going up the steps to more income was huge.  I stayed home 10 years and if I had worked and gotten our step increases, I would be making $15K more per year right now by being 10 steps up.  

[wendyroo]

1 hour ago, Ktgrok said:

Thank you all!

Definitely her job is impacted, in that she works from home at nights while he sleeps doing software development for companies overseas, as that leaves her available to take him to appointments, care for him, etc. But a big part of the story is trying to get him better established in school so that she can get work done during the day while he is there, as being up all night is taking a toll on her. 

The bit about having to buy more expensive clothing for sensory reasons, having to replace them, etc is a big point, definitely going to include that! Swimming lessons, which would  be private so even more money, is a good idea - both for sensory/OT reasons and because the story takes place in Florida so it would be important to her that he can swim for safety reasons. 

Travel costs (gas/more reliable car/etc) for therapy is another thing I'll include, as she lives in a small town on a barrier island. Having to drive to the mainland for at least some of this appointments makes sense. 

My autistic kiddo has huge sleep challenges, so that would be an additional stress about working at night.  Some nights I have to tend to DS for hours and hours after bedtime because his mind just won't let him rest and left unattended he would be a destructive and a danger to himself and others (this is an especially hard time of day for him because his medication has worn off by then).  We have also learned to sleep very lightly because he will sometimes wake in the middle of the night and try to wander around the house.  Again, if left unsupervised he will help himself to medications, play with knives or tools, put holes in doors or walls, shred entire rolls of toilet paper, etc.  We now lock him in his room at night and "shake down" the room at bedtime to make sure he doesn't have anything dangerous in there.  Really, he can't handle have ANYTHING in his room - no books, no tissues, no dresser, etc.  We even caught him wrapping his sheet around his neck and bedframe, so we no longer let him have any thin lengths of cloth including pajama pants - he just has to wear underwear and sleep in a sleeping bag.

Wendy

[Innisfree]

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Edited October 17, 2018 by Innisfree