Special Needs

ABA question

We don't yet have DD diagnosis, but I know its coming. Infact the longer I'm here and the more I read the clearer it gets. We just got the paperwork from the behavioral center in cincy (we live in Dayton), and sent it out in the mail Saturday. The paper stated it could be months before they had an opening, and it really concerns me that we will be wasting precious time.

We had the EI intake appointment already and our actual evaluation is set for December 4th. I have concerns there too as I saw one of the other parents posting, DD has been able to read numbers and letters since she was 18 months, and since she can be very verbal but all of it is scripted and rarely functional, how much help can they or will they be able to pony up?

My question is can I seek ABA without a DX? What is the best course of action? She will be 2 on December 23.

Re: ABA question

  • Look at cost and what is available in your area.  You can do ABA, but if want insurance to cover it you need a diagnosis. 
  • I would put yourself on the waitlist for appointments -- sometimes you can get in quickly and on short notice when they have a cancellation.

    You can seek ABA or any other therapy privately, and without a diagnosis, but you will likely have to pay OOP. 

    It is hard to say what exactly they will offer.  My son was never offered ABA through EI -- just OT and speech.  He is older now, and has an autism diagnosis, and we have been able to get ABA through a Medicaid waiver.

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  • I understand your sense of urgency, but you need to take a step back and look at the big picture here. You feel panicky right now, I get that. Been there. But this is a long process of evaluation and decision, evaluation and decision -- some formal, some not. You don't want to jump on the first therapy bandwagon you see, only to discover later that if you'd taken your time and made a careful and informed decision, you would've chosen something or someone entirely different. That's how you waste time and resources. It is OKAY to take some time to be informed. That will help your DD, not hurt her. 

    You have an eval set for a week from today. Unless you are independently wealthy, that evaluation will likely determine the bulk of your DD's services until and maybe past when you have a dx. ABA run about $100+ an hour OOP in my area; insurance will not cover it without a medical dx, which you are probably months away from; and it may not cover it even then. Some insurance covers no treatment for autism. Medicaid or other county services are almost certainly also dependent on a medical dx. Most people rely on EI/school district services and supplement privately as they are able.  

    So, concentrate on preparing for the EI evaluation -- organize your concerns about your DD's behavior and development so that you can present the evaluators with useful and relevant information, beyond what they see from her that day, that may help determine the level of service she receives. Once you have an assessment of her specific needs and delays, and you know what you'll be receiving from EI and on what schedule, THEN you start asking them things like "If we were going to supplement with private therapies, what do you think she needs most? Do you have private therapists you can recommend, or organizations to contact for more resources or information?"  

    That evaluation document will be one of the most important documents you have for awhile. Every private therapist you contact will want to see it (scan it if you can, so you can email a pdf on request), to give them an idea of your DD's needs and whether they can meet them. You need a baseline, and until you have a private evaluation, this is it. 

    You will also want to weigh whether to supplement with something more, or something different (if they give, say, two hours of speech a week, do you do more speech or do you go with OT or ABA?). Again, that should be determined by her areas of need from the eval. Do you choose a therapist who is in-network with your insurance on the possibility that insurance may cover something at some point, or do you go out of network? Logistically, you're probably going to have to prioritize EI's time in your schedule, because they may only have certain time-slots available -- so get their days/times set up first, then you can work private therapy around that if you choose. 

    There are many, many decisions to be made. You can't have to make them all at once, and it's better to make them on an informed basis. Until that EI eval, you don't have much information at all on which to base anything -- so try not to jump the gun. 

    I'd also recommend doing your own research. Read up on Floortime, ABA, RDI, speech, OT, and other common therapies from reputable sources. Take a look at the 100 Days kit from Autism Speaks. Think about how various therapies mesh, or don't, with your daughters needs, preferences and abilities. Be willing to invest that time and effort to make sure that you're making the best choices for her, not just whatever you can start the fastest. After receiving DD1's dx, it took us three months of research and phone and in-person therapist interviews before we selected a core therapy and a therapist to do it -- in the meantime, DD1 was receiving some services through the school district. In the moment, it was frustrating that things took so long; but as time goes on, the more valuable I realize it was to our long-term efforts. I will never regret taking that relatively small amount of time to thoroughly educate myself in order to put both of us on the best possible path forward. 

    Services are more important than a dx. Once you have services in place to address her needs, it's going to get easier to wait on an official label because you'll be doing something instead of nothing. You're very early in this, and those services are coming soon. Hopefully that will take the edge off for you. You got the ball rolling with Cincy, now it's a waiting game there. I would not jump into private therapy until you know where you stand with EI, and what their assessment of your DD's needs is. 



    DD1, 1/5/2008 ~~~ DD2, 3/17/2010
  • We used ABA for ds without a diagnosis for about 10 months. At the time, our insurance covered it, but they just changed policies to only cover it with an ASD diagnosis, which ds does not have. ABA has been wonderful for him though. We are now continuing it for just one hour per week for now, since out of pocket that is all we can afford. It's so expensive! We likely will stop it soon b/c of the cost.
    imageLilypie Premature Baby tickers imageLilypie Premature Baby tickers
  • Thank you ladies,

    I appreciate LB and Aunties points of my false sense of urgency, I guess it gets to me when I read "Do everything you can, as early as you can" and I feel like nothing is happening. But you are both right, without knowing exactly what she needs it is a waste of time and resources.

    I did start a notebook... I list everything we have done up to this point to have her seen and evaluated medically (all drs appointments, evals, and paperwork), and also to keep track of the progress shes making, new things she does, etc. My husband really loves that idea, the fact that there is something conrete to remind me of what we've done and are doing to help when I'm feeling down about it.

    We have been doing LOTS of floor time, and I can tell a difference.

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