Can someone talk me through getting an IEP?

[Mom2Five]

Hi! This is my first time posting to this particular board and I am pretty new to this site in general. My dd6 has some issues going on. I have not been able to get anything diagnosed though besides severe language delays. I suspect auditory processing disorder, for sure. Our pediatrician was convinced she would be diagnosed with autism as well and I agree it is likely she is somewhere on the spectrum. I had her "tested" and they felt that they couldn't give that diagnosis at this point. I'm not sure how this is usually tested, but basically the lady just asked me some questions and watched her play while asking them. I'm not sure how it is normally done. I suppose that is another post. She has been on a waiting list for speech for the last few months. I am trying to get her in somewhere else for testing for asd to get a second opinion.

Should I pursue getting an IEP (we homeschool) or would she need a formal diagnosis first? Would an IEP be helpful in working towards a diagnosis? Is there a downside to having one or a risk in going through the public school system to try to get one?

[OneStepAtATime]

Welcome!  There will probably be others that will join in and give you some great BTDT advice.  In the meantime, I will toss in my 2 cents.

 

 If you can get really good services at a very low or no cost through the Public School system then pursuing an IEP at this time might very well be a good idea.  However, if your school system/state does not offer really good services then I don't know that I see the point in trying right now since your child is very young and you homeschool.  I would be working on getting private evaluations for sure.  I would also be documenting what, if any, accommodations and remediation you are implementing so you can have a paper trail to indicate these things were done.  It will make it easier to get accommodations later on (if needed) if you show that they have been needed all along.

 

Also, while private evals are frequently more accurate and more in depth than an eval through the school system, many times people have posted on here that their school district did not accept outside evals and they had to test the child themselves before considering any assistance.  Therefore, even though the private eval may net greater information, going through the school system may require additional evaluations.  Keep in mind that most school districts I have seen personally or have heard about here and elsewhere are coming at this from the perspective of how to get a child functioning at grade level.  The bigger picture, how a child thrives through their academic years and throughout their life time, is frequently not on their radar.  If you have a private evaluator that is coming at this from the same perspective as the school you might want to try and find a different evaluator.   It is really easy to get tunnel vision and only worry if a child is "on grade level", which is honestly a fairly meaningless assessment, IMHO.  

 

Many times the process to go through the school system can be very, very long.  To start that process you need to make a formal request in writing.  Have you read the information on the HSLDA website?  That might help.  I also highly recommend reading past threads on here.  Lots and Lots of threads regarding this very thing.  Do some preliminary research before contacting the school.   Don't just throw yourself on their mercy because there is a very good chance the people in the office don't know the laws much better than you do.  

 

As for starting down the path to an IEP right now, after doing some research regarding your specific state and school district and this whole process in general, I would contact the school, talk to them on the phone, get friendly with whomever is in charge of this stuff, feel them out.  They may be highly resistant or super sweet and helpful or anything in between.  Write down who you talked to and get their email address.  Send an email summarizing what you thought you understood them to be saying from the conversation.  Then you will compose and send your letter explaining what you are asking for.  Do it by certified mail or deliver it in person and have someone sign that they received it.  Be prepared for a long lead time between that and your first meeting.  Any communication you exchange with the school you should document, including who it was with and the date and time.  Be very polite but be firm.  

 

 

You might read Ben Foss' book The Dyslexia Empowerment Plan, since it addresses a lot of the ins and outs of Public School evaluations, etc.  He is not terribly homeschool friendly for the long haul (don't let that undermine your confidence in homeschooling) but he has some helpful insights.

 

You might also read Kathy Kuhl's How to Homeschool Your Struggling Learner. 

 

Hopefully you have a school district that is really on the ball and a state that offers great services.  Good luck.

[kbutton]

There are some pros and cons to going through school--depends on the individual district.

 

First, it's not terribly unusual for girls to be identified later. Same for kids with higher IQs and less of the outward behaviors that people associate strongly with autism. Some kids also just put their own unique spin on things like stimming, and it isn't as evident. 

 

Will try to post more later about the IEP process and diagnosing beforehand. The school will not give a label, but they might qualify her as a student with autism if she has enough of the characteristics. Or, they might not be willing to even consider it if they can blame any and all difficulties on any other problem. 

 

[Mom2Five]

Thank you both!  I am thinking that I should have renamed my thread, "What is the first step". Lol. I feel so lost about how to even get her help that she needs. That is really the only reason I am considering getting an IEP and try to get a diagnosis. The professionals I have spoken with so far also seem to not know the ins and outs of testing and how to really proceed. I guess I need better professionals :).

Is there some sort of across the board testing that can pinpoint a more specific area to look in and more specific tests in that area. I know there was someone recommended to me before we moved for an overall evaluation but they did not accept our insurance and it would have been $1500.

She has always had problems with abstract things but has been very smart and ahead and where her older brother and sister were doing the concrete things. For example, when she was in prek she scored highest in the class with shapes, letters etc. whatever was on their little test.

At 6 though, if I ask her what she had for breakfast she wont be able to tell me. She might name five things and what she had for breakfast might happen to be in there or it might not. A lot of times when you are talking to her or asking her a question she will respond with something completely out there, like how she wants you to buy her a pet bunny. There is definitely a major disconnect there and the majority of it is her inability to have a conversation.

It took her until just a couple weeks ago to be able to use the correct pronouns for gender and ive been gently correcting her and working with her for years. She still sometimes uses the wrong ones.

Ugh. We were at a pediatrician before we moved that just refused to give referrals as though you would think it she was paying out of pocket. Her only response was to put her in the public school system and they would tell me if she needed anything.

We are now at a drs office who will do anything I want as far as referrals but I cant seem to figure out what she needs. All I keep getting is speech therapy. Maybe she needs to be in speech for a few months and then once they see her not improving etc she will get different referrals.

[PeterPan]

Well I'll take a different tack.  The goal of the school is only to identify students who have disabilities that affect their ability to receive an education.  You can have situations where a dc has a diagnosis (dyslexia, ASD, ADHD, etc.) and does NOT get an IEP.  To get an impartial medical diagnosis, you need to go private.  Since your ped is seeing it, that's very concerning.  The ped is seeing SOMETHING.  I would look for an autism clinic that can do a multi-factored eval (speech, OT, psych, etc.) or do a combo or private practitioners to get the same effect.  I would make sure the place has a reputation for slowing down and listening.  I would also get her hearing eval'd by a place that can run an APD screening as well.  Sometimes and SLP or psych can run this, but an audiologist that specializes in APD will have a full booth set-up.  This would be another explanation for the things your ped might be seeing.

 

You definitely need evals.  The question is who's paying for them.  The ps is required by federal law to identify students with disabilities, but it's ONLY in respect to what affects their ability to receive an education.  There are LOTS of kids with disabilities with no IEPs.  For a question as complex as ASD, you really want to go private.  

 

Just to make you snort, the "autism expert" at our ps is an SLP taking some grad classes for a certificate.  They'll do a short observation in a novel situation and say bam, yes no, up down, done.  You already had that and it didn't answer the question.  You need a place to slow down, a place that does the much longer, more time-consuming forms.  A BCBA can refer you to a good place possibly or might even work under a psych to do it together with the psych.  They can do the ADI-R, the Vineland, ABLLS, all kinds of longer tests.  It doesn't have to be one hour and done.  You can have one day where in that one hour it's TOTALLY OBVIOUS and another day the wind blows and it's not for whatever reason.  Our ps doesn't even have all those tests.  Now maybe your ps will be different.  By *law* they ought to be able to get it done, but it's going to be a really skewed process.  If yours is one of the schools that *doesn't* have the ability to get it done, you're going to be locked up in filing paperwork to dispute the results and go private, blah blah.  If you have the funding to go privately, it will be more direct and give you more reliable results.

 

There *are* reasons to get an IEP. You read about it a lot on this board because some states have disability funding.  Some kids have been in the ps.  Some kids are in districts/states that will provide services to homeschoolers.  So there are reasons why it can be worth the hassle.  But if you have the funding, go privately and be done with it.

[PeterPan]

Oh dear, one of your peds wanted you to go through the ps???  We've had people say that, but it seemed like it was a way to save the insurance company money.  It's actually not so crazy to say language delays and a speech eval.  Absolutely she should be getting that.  But I'm just telling you the ps is going to be iffy on this.  They might run everything but do a crap job interpreting.  They might run stuff and miss a lot.  They might not bother to run things.  Or they may do a great job.  That's just the track record they have.  In our area there is NOT the funding for the ps evals to allow for thorough evaluation of detailed, complex problems.  There just isn't.  Those people have to let the ps eval, then go through the dispute filing process and force the ps to pay for 3rd party evals.  That's how people get private evals that the ps can't handle in complex situations.  That can take a long time and it's basically going nuclear.

 

This is a complex situation.  IF you have the funding, go privately, absolutely.  That is your BEST way to get complete, thorough help.

 

So yes, first step is referrals.  You want a neuropsych eval, an OT eval, and a speech eval.  If the ped is saying possible ASD, then OT eval is a must.  So that can be at a clinic or piecemeal, but that's what you're trying to get done.  And you want a psych who specializes in ASD who will really slow down.  I would also want audiology, because I'd want to know if there's hearing loss, if there's possible APD.  That too could explain your symptoms or be comorbid.

 

Honestly, when the ONLY thing you're saying is conversation and language acquisition, that can have more explanations than ASD.  There are more labels.  So that's where you ask what else am I seeing, what are we missing.  So I'd get ALL the evals, and I'd get them privately.  For the OT, go with someone with a strong reputation for ASD.  You want them to look for retained reflexes, sensory issues, fine motor, praxis, all sorts of things.  For the SLP, you'd like to see the CELF or some other thorough language testing.  An SLP can run the SCAN3.  There's another APD screening tool, but it's not as good.  And me, I'd be wanting that with an audiologist who has the whole booth setup for the APD.  That way they can just be thorough.  In our area audiologists don't want to do a full APD eval until 7, but you don't know what will show up till you get there.

 

Private evals, definitely.  

Edited February 8, 2016 by OhElizabeth

[Crimson Wife]

Also, while private evals are frequently more accurate and more in depth than an eval through the school system, many times people have posted on here that their school district did not accept outside evals and they had to test the child themselves before considering any assistance.  Therefore, even though the private eval may net greater information, going through the school system may require additional evaluations. 

Our school district did perform its own evaluation (as did the Regional Center) even though we came in with a private eval from a developmental pediatrician. There is a difference between a medical diagnosis of autism and an "educational" diagnosis and not all children who have the former will qualify under the state ed code for the latter. It's fairly common for higher-functioning children to wind up with a 504 rather than an IEP.

 

That said, coming into the IEP process with an independent eval puts the parent in a significantly stronger position since the district knows that they would have to prove in a due process hearing why their eval is more accurate than the outside one. With the Regional Center, my DD's case went up for a higher-level review in order to determine qualification for continued services past age 3. I got a 2nd independent opinion from a pediatric neurologist & let the RC know that I would be appealing any denial of services. Putting them on alert that I wasn't going to take "no" for an answer I think helped push them towards approval.

 

If the test that your DD did was the ADOS, I have to say that I don't have a very high opinion of it. My DD had it done 3 times in 2 months (developmental pediatrician, school district IEP team, and Regional Center child psychologist) with 3 different results despite acting the same way as far as I could tell. The developmental pediatrician said she met the criteria for both language and social. The district said she met it for language but not social. The RC said she met it for social but not language. My DD is way more interested in social interaction than a lot of kids with ASD (though she struggles with acting on it appropriately) so I could see disagreement about that particular domain. But the language delay was clear because she was a month shy of 3 but pretty much only speaking in single words and a few short phrases (that I now know don't "count" since they're scripted like "I want ____").

[Mom2Five]

Thank you! This gives me a lot to think on and research along with getting to know what exactly is available in our area. She has other issues, but really everything can be trace back to language and her possibly not understanding what we are asking as far as behavior. She does obsess about things. I will get asked 100 times a day about when I am buying her a pet cat or bunny or mouse. She has issues to see an OT about as she is still doing a full fist grasp on her pencil. We are working on it at home with what I have found on the OT pages online. She has sensory issues, which all my kids have to some extent. She doesn't like loud noises, gets overwhelmed easily. You cannot reason with her in anyway, but again that can be connected back to the language thing.

 

I will make an appt for this week and go with a list of referrals etc

[Crimson Wife]

Just to make you snort, the "autism expert" at our ps is an SLP taking some grad classes for a certificate. 

 

Diagnosing autism is *SO* not within the scope of practice for a SLP because autism goes beyond just language concerns. A SLP could diagnose difficulties with pragmatic language use that would be a symptom of ASD, but a referral should be made to a psychologist, developmental pediatrician, neurologist, psychiatrist, etc. who legally can diagnose.

 

Even a SLP who holds BCBA certification shouldn't be diagnosing. My DD's ABA center has a BCBA-D on staff who is a child psychologist specifically because only psychologists and MD's in certain specialties can legally diagnose.

 

[PeterPan]

Crimson, don't tell that to the ps here.  Sigh.  

 

M25, while communication *does* underlie behavior, when you're seeing these other things you need complete evals.  I'm glad you can get those referrals and get this done.  We'll be here when you have questions and need to talk.  :)

[Lecka]

I wonder if you could talk to your pediatrician about a different referral for a diagnosis.

 

You may need to provide more information and observations.

 

For me, I had my son in pre-school and so pre-school filled out an observation form.

 

You don't want there to be blank information just b/c she is not in a pre-school or a school.  You may be able to fill out those forms, or someone from an activity or church may be able to fill them out.

 

If you did not have any opportunity to provide more information, you can mention that to your pediatrician and say it was not complete.

 

I don't know if you need to look for information about other places to go, or if your pediatrician may have a list of options, or what. 

 

I have gone back and talked to my pediatrician more for things like this, sometimes she has a list, but she doesn't know that when I call them, it turns out that there is something different than it shows her on her list. 

 

I have not done this, but some people switch to a pediatrician who has more kids with autism and then will know more about the different places they can refer to. 

 

(In other words, maybe your pediatrician has no way to know the place you went did not ask for or take into account any outside observations or information, unless a parent comes back and says "this place was just not very thorough, I need a better referral" or something like that..... and at a certain point, you can work with the pediatrician you have, or you can jump ship for a pediatrician who may have more of an idea on the referrals.  For myself -- I kept a pediatrician who was very open and easy to work with, but did not have much familiarity with the places that were on her list of places she could make referrals to.)

 

I think you also, if you have any insurance or anything that might pay for speech or OT or ABA etc., then it is a question to ask your pediatrician (maybe -- or maybe you find out another way.... I have military insurance, and I would ask this at the front desk of the health clinic, or I would ask providers about my insurance plan, and they just know about what my plan covers) ------ but what does your insurance require. 

 

You might need to think about, what does the school district require (for an IEP) as well as what your insurance requires (for any therapies possibly covered by insurance).

 

I have military insurance, though, and I really don't know how people with other kinds of insurance find out what their insurance may and may not cover and what paperwork they need you to provide. 

 

For my insurance, I need a diagnosis, and then I also need the place that diagnoses to recommend certain services.  Then I need to make sure that piece of paper is faxed to the insurance. 

 

That is just an example though -- you might need to find out more locally or with your own insurance company.

 

If you have any autism parent support groups in your area, you might be able to go there and see what places are good for a diagnosis, especially for girls maybe, and maybe you can meet someone who has your same insurance, or who knows about any state mandates that may or may not exist in your state for insurance, etc.  There may be a waiting list to get on, etc.  That is going to be different from place to place, though.   

Edited February 8, 2016 by Lecka