This Could All Drive Me Into Therapy. If I Could Afford Therapy.

As much as I bitch about waiting rooms and the gajillion dollars a week we pay out in copays, I am so grateful for the therapies we’re able to take Jack to.

But last winter the SLP who ran our social skills group left her practice and we lost social skills. And then a couple of weeks ago we got letters saying that our occupational therapist’s practice won’t be taking our insurance anymore, so as of this week we’ve lost OT.

So now we’re down to a half hour of speech therapy a week for Jack. Period. That doesn’t seem like a lot of therapy for a kid who so clearly needs it. But who can afford $90 every week for insurance-free occupational therapy? And how do you convince the school system to give it to him in school when they are absolutely convinced that his OT needs don’t affect his school success?

I feel a little stressed because I think he needs more. I look at Jack and I look at a half hour of therapy TOTAL each week, and the scale is definitely unbalanced.

Our OT was amazing and folded speech skills into his sessions, which included three kids so she could work on social skills at the same time. And as far as I can tell, there just aren’t any pediatric OTs in my area who take insurance.

And just as a side bitch, I drove for an hour and a half yesterday for a half hour of speech therapy because no one closer to me takes my insurance, takes new patients, or returns phone calls. (But I’m grateful for it! Please, oh, gods of therapy, don’t take our SLP from us.)

It’s frustrating and it’s disruptive, and it pisses me off that I can’t take my child to a therapist he really connects with and improves with because the insurance company is made up of assholes who won’t pay the fucking OT.

Health insurance reform, anyone?

(Just as an FYI: Whenever I write these sorts of posts because I’m in a really bad mood and I’m pissed off, I get a lot of people who worry about me. I’m okay. Jack’s okay. We’re looking at our options now and we’ll hopefully get him started on something in January. If nothing else, we’ll increase his speech therapy. On an unrelated note, what kind of therapies have helped your child the most?)

36 thoughts on “This Could All Drive Me Into Therapy. If I Could Afford Therapy.

  1. I am so thankful for 3-day-a-week special ed for my 3-year-old (which includes speech AND OT) and an awesome private OT 20 minutes away. Thanks for reminding me how lucky we are, and I really hope it all works out for Jack. We need health care reform, and we need a renewed look at how autism is treated in the school districts.

  2. That bites a big one. I can see how you would be pissed about that. Very frustrating. I hope you can find some other options that will work. My only experiences with therpay have been with Aiden and Drew both having speech therapy. Aiden will be re-evaluated in January because it looks like he may need to go back in. Lucky for us that will be through the school district. When Drew was young though, our insurance wouldn’t cover his speech and we had to pay it out of our pocket for 3 months until he started school and was able to get it through there.

    Good luck!

  3. Michael is doing some of the same therapies and our insurance is reimbursing out of plan benefits. It’s not 100%, but it is something.

  4. 1) Take a deep breath
    2) Cus me out for saying the above
    3) If there are no pediatric OTs of SLPs within a certain range (as determined by your insurance), request a gap-extension (insurance pays with you filing claim if distance exceeds some preset milage)…be ready to plead your case in writing. This worked for us until a pediatric OT opened up 40 miles away, but we decided to stay with the one best for the boys and 5 minutes from the house). Look into your out-of-network costs.CLAIM everything including mileage on your taxes.
    4) Decide what is best for Jack and your family. We private pay for both of my boys to go every other week for $85 per session. We live off of what a new car costs, but this is the therapy that addresses most of their needs and they each have different goals from fine motor, eating, sensory integration, self regulation…Mooser needs private pay speech for apraxia and we haven’t done it for 6 months but hope to at the start of next year, so I’m not sure how we are going to swing that. We decided against social skills ‘class’ for Bubba since he never was generalizing anyhow. It’s a struggle, but we do a lot with the boys together, working through frustration, communication, etc. Also getting them together with one or two kids and facilitating helps sometimes. Bubba also attends play therapy, but insurance does pay for that (partially).
    4) Take stock of what you naturally do at home… playgrounds, hiking, painting, obstacle courses… you do a lot. Maybe you can private pay for 1 session a month and 1 consult session a month to keep you on target, share your school evals to get programming ideas at home and make you not feel so alone…
    5) I am grasping here because of course I really want to say “Fucking insurance. Fuckity fuck fuck can’t something be easy?!?!?”

  5. Hello:
    My name is Erika and my sister turned me onto your blog. I used to work at Kingsbury Day School, a special ed school in DC. I know a lot of speech therapists, OTs and PTs. I’m sure you have looked into many options. But I have several friends that are Speech Therapists and work for Michelle Fill & Associates in Bethesda. I know that they are a good company and hopefully they take your insurance. I also have friends that work for Lynne Israel and Associates which is an OT and PT group. I hope one of these groups work out for you. Good Luck!!!

  6. “luckily” our therapy center does a voucher for $700 for 10 sessions.

    Move to PA? Please? The secondary medicaid voucher thingamabob is a huge help for so many families here AND our therapy center takes that for insurance.

    But at the same time, I know I’m picking and choosing which kid gets services and for how long and I gripe about the drive and it’s only 30-45min depending on traffic.

    huge *hugs* It will workout somehow but the wrangling of finances, time and phone calls is maddening.

  7. You guys are all amazing. Thank you! Erika, I don’t have your email, so I want to thank you here. I am absolutely going to check out these resources. Thank you so, so, so much!

  8. What Kristen said – ABA. I’d train you if you wanted. It’s what we did with Adam. You really could do it yourself and while having 2 other kids. I’ve yet to find a social skills group that fits what he needs, so I keep doing it myself with resource books and ABA.

  9. When I read this sort of crappy stuff (I mean the situation, not your writing!), I am momentarily thankful for Nik’s comorbid cerebral palsy. It provides us with the magic “medically necessary” card for therapies. Never mind the kid spends half his week in therapies of every stinkin’ sort.

    Might be helpful if you get copies of all the reports from the therapists and look at the goals to see what can be reworked to become relevant to his education. Also, just bc school says “it’s not relevant to his eeducation,” IDEA might dictate otherwise.

    Time to really go through it all w/a fine tooth comb.

  10. So I’m assuming you don’t have Medical Assistance for kids with disabilities in your state, right? B/c we could get both speech and OT through that (after some time on the waiting lists with the few people who take that insurance).

    We did do Dynamic Listening (a form of auditory integration) with an OT who was also trained in Floortime and got it covered as out of network through our private insurance under developmental coordination delay. It took some fighting but we did get in reimbursed under the out of network rates. It was phenomenal – both the DLS and the Floortime.

    Through it all, the biggest thing that helped Michael was taking him off casein and gluten.

    If you think you have a case with the school, you could pursue an independent educational evaluation (which they are supposed to pay for) to fight for more school services. Not having gone that route myself, I don’t know how effective it would be, but you could research it.

    Did you ever check out that website? It has some pretty cool stuff on it that you could easily do with him.

    Good luck – I know it all totally sucks sometimes!

  11. How awesome is that Erika?

    And on another note, doesn’t the school have an OT, ST, and a resource room available? Aren’t MoCo schools required to have those?

  12. Right now the ‘therapy’ I’m most impressed with is the educational advocate who is kicking butt and taking names and getting the school district to at least consider paying for the things we couldn’t otherwise afford

    But, if I have to choose one of the above ;-), it’s definitely his OT social skills class. He loves it, and he’s made huge strides there. The problem has been that they haven’t yet translated into the classroom, but…see above re the ed advocate who’s pushing to get in-class OT added to the after-school social skills class.

  13. How can the school claim that OT doesn’t affect his school success? Isn’t, say, writing and pencil grip so on, a school skill?

    I would really pursue this at the school level, esp. considering the insurance issues.

    Insurance companies suck. And so do school districts. Sorry, I’m pissed off too.

  14. Your situation is especially amazing since you live in a major metropolitan area, not some remote outpost. I’m guessing the school district will be a dead end, since Jack is so intelligent and stays on the Wall of Fame. As long as he is covering the 1st grade basics, they’ve met their responsibility to educate him. Insurance should be responsible, in a better world.

  15. We’re in the same boat. Our 1:1 OT decided he needed to be in a group, so the insurance now won’t pay for 1:1, but the OT office didn’t save him a place in the groups- we’re on a “waiting list.” And their lousy billing practices don’t help, I’m sure we’ll be on the “waiting list” until we catch up with our “surprise! we weren’t billing properly and you still had deductible!” bill. So we’re also down to 30 minutes of speech. Ack.

    And our school OT is so bad, having more time there would be useless.

  16. Fighting our insurance company to cover C’s speech is on my to-do list. Usually I’m pretty good at that sort of thing, even though the insurance people insist that ST is covered only for those with a “severe” medical issue, such as stroke.

    But even our pediatrician, who has jumped similar hurdles with at least one developmental delayed child, shook her head and said that it would be a losing battle, to just accept that we have to pay for it.

    $110/week. Worth every penny but every penny hurts, too.

  17. It’s times like this that I am reminded of how insanely lucky we are with regards to Joseph’s therapy and insurance. What our insurance doesn’t cover (and that’s a lot) is picked up by his state insurance. Since he was adopted through the county as a foster child all of his medical expenses are 100% covered. Joseph will be returning to PT (today actually) for the first time in a few years but for a while he was a ton of therapy. OT, PT, speech therapy, food therapy combined with sensory integration therapy. We never had to pay a penny out of pocket. I’ve often said that if one of our children was going to need all this therapy I’m glad it’s the one who’s paid for. I don’t know how we would do it otherwise.

  18. My oldest has some issues, and we had problems with insurance/location (nothing near us that took our insurance—but we could go 2 hours south if we wanted to! so no complaining, insured patient!). I empathize. I found no good solution. The pediatrician advised enrolling him in preschool, and also said lots of siblings would help.

  19. Move to NY and get a private evaluation done recommending whatever services best fit his needs (ie OT 1×30/week, speech 3×30/week, etc) and then let the state pay for it?

    Otherwise, I strongly advocate ABA. Done properly and well, it is successful, can address all domains (speech, OT, even parts of PT). Financially, it can also be feasible: if you can find someone studying to be board certified and needing “experience” hours, you may be able to pay less. You also could pay a private consultant to oversee and supervise Jack’s ABA therapy and hire a college student or grad student for REALLY low – $15, $20 an hour. (The consultant will be more, much more…but you won’t need to see him/her frequently.)

  20. I am an OT student. I’ve been following your blog for quite a while but haven’t commented before. You wouldn’t believe how much time we spend in “ot school” learning how to deal with insurance companies. I am just hoping the system gets better by the time I graduate. (I can dream, can’t I?) Anyway, you might want to try contacting the American Occupational Therapy Association ( or the American Occupational Therapy Foundation ( Both are based in Bethesda, so they might have some info about OTs in MD that take your insurance.

  21. That’s really frustrating. I’d say the best therapy for Sam has been social skills/speech. For John, definitely ABA, but also therapeutic riding. I might have some names for you if you’re interested.

  22. Oh I am so feeling this post. I’m struggling with the same thing, and it’s a timely struggle if your enrollment window is open: consider contributing to a flexible spending account – you’re still paying for it, but it will be on a pretax basis.

  23. Anonymous, thank you so much! What great suggestions. And how disheartening that you have to spend your time learning about insurance rather than OT, huh?

  24. We’re in the same boat. Getting ready to drop a load of cash on further testing for Top Gun as we suspect dyslexia and auditory processing disorder on top of the ADD, and of course insurance won’t help with it. The school district tests ranked his speech within normal range, but just barely, so they won’t offer him services but his teachers state that they can’t understand him so they are pushing for another round of testing. The result will probably come back the same, so we’ll pay OOP for speech therapy, too. And don’t get me started on all the autism stuff for Builder Guy. Having special needs kids is very very expensive.

  25. i don’t have any fabulous suggestions. i just agree with you. my son has improved leaps and bounds with his speech therapy and his speech therapy play group. i know that we would have a different kid right now if it weren’t for those two things. but we just found out that the state isn’t going to pay for the play group anymore so that will be ending in january. our speech therapist says that she gets paid for her time with us by her agency but for the free lance therapy she does where she has to bill the government directly herself, she hasn’t been paid for months now.

    when the state government says they are going to cut spending on kids and elderly first, apparently they really mean it. what i don’t get is, why are those the first things to go? why not the expense accounts of our officials or something extravagant like that?

  26. We have awesome Floortime/DIR therapy that insurance pays for, but we are having a miserable time locating Social Skills groups that are covered by our insurance and can only find short-term OT that insurance covers, so we need to take breaks from it and then resume when we have ‘new’ stuff on which to work (we work on spectrum related issues, and the spectrum ain’t going nowhere, but we make up those short term goals) and are hoping we can get into pragmatic speech therapy that is covered by insurance. And none of this is covered by private insurance, just by Medicaid. PA has a new autism-insurance mandate but it seems not to be working so we make do and hope we can keep up with this, and our mortgage, and raising two kids, etc etc.

  27. Son of a bitch!!!! What the hell is up with your county!? I do believe it’s one of the wealthiest counties in the country, thanks to several choice cities, and they’re not offering OT for an AUTISTIC CHILD?!?!?! WTF???

    Where is your lawyer? Maybe he/she can help you out with this???

    But we don’t need national health care. Nope. ‘Cause it’s totally fine for a child to have to be in the car for over an hour to get 30min of care. Sheesh.

  28. Ok. I have thought about re-training for a career in OT. While OT isn’t my background, I think it would be a good career ‘fit’, for me. However, I would need to get a masters or likely a PhD – true?
    And with that said, if I were associated with a hospital or other practice, I could get by on a reasonable hourly rate.
    Do you know what your insurance, or other plan / program, sets as a reasonable rate?

  29. Also, my asking about hourly billable rates was a bit tacky. Sorry! I’ve been out of work in the corporate world for over 8 months. I am NOT considering OT because of my unemployment. Rather, I am taking this opportunity to revisit some early assumptions about ‘what makes a fulfilling career’.
    The short answer is, some career outside IBM. Oops- I’ve said too much.

  30. I’ve thought for a long time that working as an OT or an SLP would be really rewarding. I don’t know what they get paid though. I’m sure it varies wildly depending on where you work.

Comments are closed.