Can we create a master "So you are taking your child in for testing...." thread?

[prairiewindmomma]

There are a number of bits of advice floating around in this forum, but they aren't in one place. (Or if they are, can someone point the way?)

 

I remember bits like:

 

INSURANCE COVERAGE/PREAPPROVAL:

the adhd portion of testing in a neuropsych is covered more often by insurance than just learning disabilities

get a pre-approval in writing first

testing varies by location, but $2500 for full testing is a common amount

 

PAPERWORK/EVIDENCE:

prepare for several pages of paperwork to be filled out

bring in previous testing

make a list of issues you see

bring a list of questions

consider filming and posting to youtube an instruction session

 

TESTING:

there are several levels of testing

there are different tests for different issues

 

RESULTS:

act as if what the results given are "true" even if you feel they aren't

 

but I am sure that I am missing a lot.

Will everyone please chime in with their best advice? In the words of Peg from Peg + Cat, "I am totally freaking out." My boys are due for another round of testing (we are at the three year mark), and I seriously have mentally blocked out the experiences from a few years ago. Kinda horrific.

 

[OneStepAtATime]

Hmmm, well I will rattle off a few that I can think of but maybe we can organize this thread into something better organized once there are more responses.  I like the idea.  :)

 

1.  See if you can get a list of the tests that will be run, and how long, approximately, the testing will last.  Do it as you call around.  Get this done as you do research to see which one you want to go with (in case you have more than one option).  That way you can compare apples to apples.

 

2.  Confirm that they will meet with you afterwards to discuss everything in as much detail as you need, not just send you a report with a bunch of incomprehensible numbers. 

 

3.  Confirm they will let you ask additional questions after you have had time to let the results of the eval purcolate.

 

4.  Give yourself time to absorb the information after the eval.  Re-read it several times over the course of several days and refer back to it again in the coming weeks.  There will be things that you missed and things you may have misinterpreted, etc.  Let the material work itself through your brain before you make snap assumptions/decisions or reject what they are saying or embrace completely what they are saying right from the start.

 

I'm sure there are other things.  Hopefully others will respond, too.

 

Best wishes.

[OneStepAtATime]

bumping....

[PeterPan]

Prairie, do you think you actually *need* another round of testing?  It's not a given that you HAVE to do it again.  I would do it if it helps you move forward, not simply because you're at a year mark.  

 

What made your process horrific?  That's what you really have to address.  We could list all kinds of shoulds, but then you'll have a psych who doesn't like any of your shoulds and doesn't cooperate.  Each parent has to find what's most important to them.  These are humans we're dealing with, and they just vary.  Some are more compassionate, some more thorough.  Some are doing a lot of counseling and some are just cranking out high level evals.  Some are super fast and some will really sit down and talk with you.

 

Our two psychs were VERY different but both seemed to do a good job.  Anything horrific about it was all *me* and the mental processes I put *myself* through, lol.  If the psych himself was screwball and did a bad job in some way, obviously don't go back.

 

In general most homeschoolers are going to be happier with an eval they can afford.  I'd rather see someone get a ps eval for free than get no eval, and sometimes those evals are TOTALLY ADEQUATE.  Sometimes people will have insurance that drops their price for evals very low ($300-ish I've heard from people), which can reflect a low amount of time spent by the psych.  But that doesn't mean those people were dissatisfied.  And some kids are really complex and need a neuropsych, where your price bumps up to $1-3K, yes.  And it's really worth it for some kids.  But I wouldn't want someone lurking here to think their eval wasn't "good" enough or whatever if it wasn't one of those $3K evals.  You can spend that much and STILL have unanswered questions and things that didn't get run.  Some kids are just really complex to sort through.

 

With private psychs, they're usually happy to call you back and chat for a few minutes.  I definitely advise doing this.  Just ask them upfront your hit list of the things most important to you.  But recognize, the longer that list is, the more you're paying for that list.  

 

I wish this weren't entirely traumatic.  I don't know how you can avoid it, given that it's something that's intensely emotional as a parent and intensely personal as it's scrutinizing your homeschooling (not really but seemingly).  I say if you don't like talking to the psych on the phone, you're probably not going to be satisfied with the experience.  Hopefully they demonstrate on the phone some insight into the situation you describe, indicating they'll probably bring something more to the table than what you already know.  

 

Beyond that, it's all crap shoot.  My $2K+ highly regarded psych still hasn't gotten us the written report, 5 weeks later.  They're just busy and sometimes a bit hairbrained.  But if you find on the phone call that you like talking with them, that they're insightful, then probably you're going to find your time with them helpful.  If they're arrogant snoods who are critical of homeschooling, you can guess how well that's going to turn out.

[prairiewindmomma]

Pediatrician says it's time for new evals, IRL child psych friends agree, and I am inclined to agree based on what I am seeing here. We were able to peel back the first few layers in the last few years and now it's time to address more.

 

Last go around we went the developmental ped/public school eval route. Neuro (one boy needed a MRI) and dev ped and autism clinic were great. School was not. They drug their feet, I had to legally compel, school psych would not fully test. We did OT, VT, and SL-P evals and one boy had a partial WISC. The other did not. I have no idea on processing speeds, working memory, nothing. We were given limited info, told they were 2E, and the reason why they wouldn't finish testing.... We were still recovering from dd's chemo and radiation bills, so no funding for a full court case, let alone private pay testing.

 

I know what I need to know, ped agrees, I am just not looking forward to wait lists, paperwork, fighting with the insurance company, paying from tight funds, any of it....

[PeterPan]

Oh my goodness, yes you need those fresh evals then!!  So are you on the waiting lists for the places you're using or selecting new psychs?

[prairiewindmomma]

I have a lead on a new psych who has awesome credentials, is in practice with my friend, is good with soft cognitive stuff but won't take my insurance. Option B is a practice closer to home. Waiting to talk to another child psych friend for an outside opinion on personality fit.

 

Need new OT and PT people---option A has their own instaff, with option B I'd probably be referred out and end up at a place a few other WTM boardies go to.

[PeterPan]

I hate to say it, but it's worth it to pay for the better psych.  But to compare them, get the run down on how many hours of testing they would do and what tests they'd probably run.  They know their rhythm on testing, so they can definitely tell you the hours and give you enough acronyms to give you a sense.

 

If you have a complex system, have you thought of trying a children's hospital? They'll be more likely to accept your insurance.  Private often are self-pay.  They're usually doing their own billing and they just won't deal with insurance.

[Storygirl]

I thought I'd share some of our experience, since it is a bit different than some of what has already been mentioned.

 

We used a neuropsych at a very large children's hospital. We did have some trouble with billing -- we kept getting notices that our insurance was rejecting the claim and that we owed a huge sum ($13,000 :svengo: -- way more than the full cash payment would have been, so we knew something was wrong with the billing) . But it was resolved in the end, and we only had to pay $400 out of pocket. DS had about eight hours of testing, and we received a 20 plus page report six weeks (or more) later. The NP did go over the findings in person with us but does not do phone consultations.

 

I did want to point out that our NP said that our insurance would NOT cover testing for ADHD or dyslexia. Going in, DS's primary diagnoses were ADHD and anxiety, but we just felt something else was going on. They did get our insurance to preapprove a certain number of hours of testing due to some of DS's quirky and unexplained behaviors and characteristics, even though testing due to ADHD would normally not be covered. He ended up with a NVLD diagnosis from them, which explained a lot that we had always wondered about. So we were glad that we pursued it.

 

We'll be taking a different route to have DD9 evaluated, since we suspect dyslexia and know that our insurance will not cover it. We will go through an independent NP this time, partly because we know it will reduce our costs.

[geodob]

Though I would like to pick up on the title and idea of this thread?

"Can we create a master ....... ... thread ?"

 

Where we might think about idea of creating Master Threads on Topics?

As a summary of collective experience and intelligence?

 

While you are probably familiar with Quantitative research, which uses a statistical model.

Their is the other model for research, called Qualitative.

Which instead gathering statistics?

Gathers information about the Quality of different peoples experience of a Topic.

So that in this regard, the broader Topic, would be issue of 'Testing'?

 

Where this is first looked at and analysed, to identify the different Sub-Topics?

Where for example, in regard to testing?

It really begins with a Parent noticing that their child seems to be having a difficulty with certain things?

Which is most often very confusing, as they wonder if they are imagining things, or being overly concerned?

If they have previous children, then they might used as a comparison?

But all children are different, so this isn't reliable?

 

So that with a Qualitative study, this could be covered as a Sub-topic?

Which would involve gathering peoples personal experience, of starting to become aware that their child seems to be having some 'difficulties'?

Where collecting stories from a wide range of people, of their experience with this?

When gathered together, could provide a real insight and understanding of this Sub-Topic.

Which collectively paints a full picture.

A Picture, as opposed to a Statistical Graph?

 

A Picture that is formed from what is currently 'bits of advice floating around this forum'?

Which brings the 'Bits' together, to paint a bigger picture and understanding.

 

Though I must say, that I am very interested in the potential of Forums like this one?

In terms of research potential?

Where the world of research, is still coming to recognize how Forums like this one?

Will change the world of research?