Therapy fiasco — The Bump
Special Needs

Therapy fiasco

Can I vent for a minute?  A little background: I posted here a while back about DS being speech delayed. He turned 2 last month and is still totally non-verbal and unable to follow verbal cues of any kind. His initial eval seemed like it was all communication issues, but his therapist since then has mentioned some other concerns that seem mostly sensory but are definitely impacting some developmental milestones as well. 

So, on to my vent. He's been in EI for almost 6 months and they decided about 4 weeks ago that it was time for him to move into ST and they recommended having him evaluated for OT. Since then he hasn't had therapy of any kind while we're jumping through all of the various hoops to get going on the evals and referrals and authorizations and it seems like none of it gets done without me having to call 15 times. They've said now it will likely be another 6-8 weeks to even get started on ST and OT, which is beyond frustrating because he's going to age out and have to start all over again in 11 months as it is. I'm going to start buying lottery tickets so if I win I can just pay for all of this stuff out of pocket. I hate that he's being held off on something that's been so helpful for him because I can't afford therapy so I have to go the long way around. Does this get easier? Is it better when he's going through the school system instead? I'm new at all of this and I really feel like I have no idea what I'm doing most of the time. The only reason I've figured out this much is because his EI therapist was awesome and helped me through a lot of it. 

Anyway, thanks for listening if you made it through that. I literally don't know anyone in real life dealing with this stuff so I have no one to really even complain to. My friends and family are all so supportive and celebrate every tiny accomplishment of his right along with us, but they just don't get how frustrating this process has been. I'm going to try to come on here more often. It feels good to be around people that know where I'm coming from, and your brag day posts make me so happy while we wait for our own brags.  

A 4/26/10 and B 6/13/11

Re: Therapy fiasco

  • smerkasmerka member

    We had a similar situation through EI, but we ran into issues at around 2 years, 6 months.  DS just didn't gel with a therapist and it took a long time to find a new one.  By the time we got the next one, he only got six sessions before aging out.

    the bright side for us is that our school district's preschool is pretty awesome and he has really blossomed there.  They discovered the sensory part in the spring and now he gets speech and OT.  We also have him in private OT.

    i know how stressful it all can be, but just remember that a lot of therapy at this age is teaching you what to work on.  So take what you've learned and keep practicing with him while you are waiting.  

  • We never had the delay issues that I've heard of with other EI programs.  We were lucky on that.

    The switch from EI to school had it's pros and cons.  The first pro is the cost.  EI cost us money; school does not.  One of his major issues is with kid interaction.  Preschool obviously works on this.

    The cons are that he gets much less speech and OT through school (about half).  They only work on school readiness issues.  (My DS has food texture issues and school doesn't work on that because it's not a school skill.)

    With that said, he has made significant progress this year in preschool.  We are very happy with preschool.  We just also have to do private speech for his food issues.

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  • 6-8 weeks!? No way. There are certain timelines that need to be followed in EI and I'm pretty sure that would be outside of one.

     I'm a little confused about how things happened. So when the therapists recommended ST & OT evaluations, why did they stop coming? They shouldn't have stopped coming unless you had a review meeting already to add the other services in.

    There is required paperwork to request ST & OT evals. but once that paperwork is completed and in, there is a timeline of how long they have to complete the evaluation. Once the evaluation is complete, a IFSP review meeting needs to be scheduled to add that service officially in. After that meeting, there's another timeline of how long until that service has to begin. So it is a long, frustrating process, but I don't understand how you are being told 6-8 weeks. You should be getting his previous services until his new plan is in place.

    What state do you live in? There should be a regional and state number that you could call to discuss your concerns.

    Let me know if you have any specific questions...

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  • I'm in Florida. I really am still trying to figure this stuff out, so I'm not totally sure what happened. His therapy was through a company contracted by Early Steps, which I assume is the usual thing there? His therapist left the company, which we found out about on her last day with us. They called the next day to schedule with someone new, saying that she would be his ST when that paperwork was finished but would continue his EI stuff in the meantime. Since then we have had a different person every week, with at least 1/3 of the session being spent doing "getting to know you" stuff. When I asked about that, they said it was because it was summer and a lot of their people were off or only working parttime. Then a few weeks ago both of my boys got sick and we had to cancel therapy that week. When they called to reschedule she said our authorization had run out and we were waiting for stuff to go through. I called an annoying number of times for 3 weeks before I finally got them to schedule his ST eval, which thankfully, is next week. But they also told me that once we do the eval (with a therapist he's already seen for EI, so at least someone we know), it could be as long as 2 weeks for her report and another 3-5 weeks for everything to go back to Early Steps, his pedi, the therapy place, whatever else needs to happen in there. My understanding was that they didn't have the authorization to continue EI so we are now waiting for ST with this big down time in the middle. 

    Parallel to that story line was the OT situation. The company his ST is through doesn't have an OT on staff at the moment, so that's through a totally different company. That whole thing was like starting over from the beginning, though that particular therapist was amazing and even showed us some stuff to do with him while we wait to start.

    I got copies of all of his stuff from Early Steps when we started this whole thing, so there's probably someone to call in there, right? Maybe after his eval Tuesday I'll call and see what they say. Thanks for your help. It seemed sort of weird to me that there was this complete stop before we changed over, but as I said, I'm still wading through all of this.  

    A 4/26/10 and B 6/13/11
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