If you had your DC tested for Dyslexia privately . . .

[Novafan]

. . . how much (ballpark) did you pay for testing?

Just curious.

[Valerie(TX)]

it was a full battery of tests. It should have taken him 5.5-6 hours, but instead it was 7.5. The diagnostician did a pre-testing interview with dh and I, the tests, a post-test review of the findings, and wrote us up a 15 page report, which included raw, composite, and percentile scoring, a complete pyschosocial profile explaining what she had learned about ds and the way he works, confirmation that his issues were not mental or behavioral, DSM #s and diagnoses, and a very helpful list of recommendations and accomodations that he should avail himself of.

All of this cost about $1200, nearly 4 years ago.

It has been worth every penny. It provided the meat of the documentation that I needed for ds for the SAT accommodations he received, for the CC and now the university for the same purposes. For SAT purposes, because she had done such a thorough job, we were set up to get the few accomodations they would grudgingly give. Without that report, we would be *nowhere*. At the CC and university, they were delighted to help, and the report gave them the grounds they needed to extend their resources to ds.

Note that for the SAT and his colleges, the testing must be completed within 5 years, that is what they deem current. Timing might be important to you, depending on the age of the child; we will have two round of testing with ds2. Blech!

HTH

[Novafan]

Valerie,

Thank you for your very thoughtful and thorough reply.

I had a red flag day yesterday with my DS7.5. I'm not convinced that he has dyslexia, but we have some definite signs that I think need to be checked out at this point. We're doing some beginning research on the matter now and I'm taking him for an annual eye exam next week to rule out vision issues.

I am not at all surprised by the cost of this and yet I can fully understand the value in having this done. I'm going to call a local testing center to see what they will charge and my husband is checking out a new center at Yale University (my husband attends Yale) to see what they offer.

How and when did you discover that your DS had dyslexia?

Thank you again.
Kerry

[Novafan]

UPDATE: I just spoke with a local testing center and a full battery of testing for dyslexia is $6000. That's very discouraging, but I was able to speak with someone who offered some other suggestions before jumping to testing.

[Tracey in TX]

DS (and later DD2&3) were tested for dyslexia. It was provided by the school district--they were enrolled at the time. It was paid by the district.

[Claire]

I would highly recommend that you post on the Special Needs Board and gather more information before making decisions about testing. Where I am, a complete neuro-psychological evaluation costs about $3,000. I find a $6,000 price tag for dyslexia testing extraordinarily high, although I know costs are higher on the coasts and probably D.C.

My dd is a remediated dyslexic. There are different underlying causes of dyslexia, and it helps a *lot* to identify your child's specific areas of deficit. In my dd's case, the underlying problems were severe phonemic awareness delays combined with multiple severe visual efficiency deficits. We were able to achieve full remediation in reading within two years with therapies designed to reduce her specific areas of deficit.

You mentioned getting vision checked out. You need to know that regular vision exams do *not* assess visual efficiency skills, whether the exam is done by an optometrist or an opthalmologist. My dd saw an opthalmologist regularly for severe astigmatism, and he brushed off my concerns about her vision affecting her difficulty learning to read. She had 20/30 vision which he said was *plenty good* for reading. However, when I finally took her to a developmental optometrist for developmental vision testing (2 hours' worth), we found out that at 9yo she had the focusing speed of a 3yo and field-of-vision at reading distance the size of a nickel. She scored below 10th percentile in several major areas of visual efficiency skill.

I also want to note that dyslexia is now considered a medical diagnosis. Schools will evaluate for learning disabilities, but they are not allowed to diagnose medical conditions. That's why the terminology used by schools is testing for a "specific reading disability" rather than for dyslexia.

The most thorough way to get a dyslexia diagnosis is with a complete neuro-psychological evaluation. However, the quality of neuro-psychs varies a lot, and the testing usually costs in the neighborhood of $3,000. In our case, neuro-psych testing came up with a diagnosis of dysgraphia (which is also now considered a medical diagnosis) so our HMO picked up the entire cost. Had the eval not ended with a medical diagnosis, we would have had to pay for the testing-out-of-pocket.

What I would recommend is starting with an occupational therapy evaluation and a complete speech and language evaluation by a speech pathologist. To get medical insurance coverage for any eval like this, you *must* be able to provide a physical problem. For OT, it might be clumsiness, suspicion of fine motor issues (difficulty with handwriting), etc. For speech it might be an articulation problem, or receptive or expressive language problem. Your best bet is to first find a good OT clinic and then call to describe your dc. Ask if an evaluation would be a good idea. If so, ask if your medical insurance will cover the evaluation. Clinics work with insurance companies every day and can usually tell you *exactly* how a referral needs to be worded or coded for coverage. (The clinic will pick out one or more of the symptoms you mention to base the referral on.) Take this information to your GP for the referral so that the referral is written up correctly for your insurance. Do the same with the speech and language eval (assuming there is something physical that warrants evaluation). These two evals will tell you a *lot* about your child.

Once those two evals are done, I highly recommend getting a developmental vision evaluation. Here is a website (http://www.childrensvision.com) with more information. You can find board-certified developmental optometrists in your area here (http://www.covd.org). I recommend getting the OT eval first because some vision problems are actually caused by vestibular development delays and/or sensory integration problems. An OT evaluates those areas. (I would also recommend posting on the Special Needs Board to gather more information about developmental vision options before making a choice in this area.)

Once you have those basic evals out of the way, you will know whether you want to get additional testing done. Traditional testing involves doing an IQ test and an achievement test, then comparing the results to determine if there is a big enough discrepancy to warrant an LD diagnosis. However, this kind of testing tells you *nothing* about what underlying problems may be contributing to the low achievement score, and it also often gives no recommendations about what to do. Usually all this type of testing does is confirm what you have already observed -- that there is a problem.

Complete neuro-psych evals include the OT and speech/language evals. If you do decide that you need to get a complete neuro-psych eval, the neuro-psych will usually simply take the results of the evals you have already done into consideration rather than making you do them again.

[Valerie(TX)]

We may end up pursuing this sequence of of testing with ds2. I'll need to have him retested in a year or two.

Ironicly (sp?), his testing from Scottish Rite was far less comprehensive and helpful than that from ds1's eval.

Thanks again! (I need an emoticon for "digging in the bottom of my backpack to see if I have some good rep to sling your way!" :D)

[Valerie(TX)]

first, check also with SMU. They were in the process of setting up a testing center a couple of years ago, as the waiting list here in the DFW area for Scottish Rite and the few educational diagnosticians was so long. Ds1 waited 6 mo for the private diagnostician and ds2 about 4 mo for Scottish Rite, and that was on a cancelation, otherwise it would have been 6-7 months. SMU has a training program for academic language therapists, so the testing center is a natural extension of that. At the time, I heard that they were trying to bring the price in at around $650. I'm sure that has gone up. Howd'ya like to plan a vacation to Dallas? :lol:

If you pursue the possibility of testing through them, I'd ask to see several sample reports that correspond with kids in your child's age range. I'm sure they can provide copies with names blacked out.

Valerie,

How and when did you discover that your DS had dyslexia?

Kerry

We have a three-generation track record, that we know about, w/ dyslexia. Dh was one of the first kids remediated with Orton Gillingham methods in the mid-sixties; he was his language therapist's master thesis case. :coolgleamA: We are homeschoolers b/c dh was bound and determined that his kids would get the intervention they needed early, and they wouldn't have to be harassed and devastated emotionally by their learning differences. Ds1 (18yo) has to work terribly hard and long, but never had to deal with what dh endured even from his family members. Sigh!

I taught ds1 through several phonics programs before he went from reading 2nd grade level material to reading at 6.6 in the beginning of 4th grade. It was about a two month turnaround. He plateaued there again, and we had him tested in 8th grade. He had learned to read well enough and compensated so well in other areas that we did not recognize that he was dyslexic, although I knew that he struggled with handwriting and with spelling. (Dh's LT, who is still teaching small groups, did an informal eval on him in 5th grade, and she did not think he was.)

However, when ds2 was in second grade and *really* struggling with reading--just *not* able to progress to anything past short-vowel, one-syllable words--I started reading about dyslexia again. One chapter in particular in Sally Shaywitz's new book "Overcoming Dyslexia" really reminded me of ds1.

So within the space of two month's time after the evals, I suddenly had, not one, but two diagnosed dyslexics that I was homeschooling and taking to language therapy daily. Ds1 finished his program in 9 months, due to the massive amount of phonics we had done in the early grades. Ds2 took 2.5 years.

That's our journey. Very best wishes on yours!

[Novafan]

WOW! Thank you for those of you that have jumped in with some thoughts.

Claire, I'm not sure the OT suggestion seems plausible for my son. He definitely has no speech issues at all. And he doesn't have fine motor problems either. His handwriting is quite nice. Of course, I'm not dismissing your advice, I just don't see a connection to the issues my DS is having (reading and spelling).

I fear that I will get absolutely nowhere with our insurance (and someone can correct me if I am wrong or overly pessimistic). We are military and use Tricare. We looked into our policy and none of the testing we would need to get answers here is covered. :(

A part of me feels like I am being paranoid right now. But I have this angel on my other shoulder telling me that IF there is a problem it's better to find out now versus later.


What I would recommend is starting with an occupational therapy evaluation and a complete speech and language evaluation by a speech pathologist. To get medical insurance coverage for any eval like this, you *must* be able to provide a physical problem. For OT, it might be clumsiness, suspicion of fine motor issues (difficulty with handwriting), etc. For speech it might be an articulation problem, or receptive or expressive language problem. Your best bet is to first find a good OT clinic and then call to describe your dc. Ask if an evaluation would be a good idea. If so, ask if your medical insurance will cover the evaluation. Clinics work with insurance companies every day and can usually tell you *exactly* how a referral needs to be worded or coded for coverage. (The clinic will pick out one or more of the symptoms you mention to base the referral on.) Take this information to your GP for the referral so that the referral is written up correctly for your insurance. Do the same with the speech and language eval (assuming there is something physical that warrants evaluation). These two evals will tell you a *lot* about your child.

[Novafan]

However, when ds2 was in second grade and *really* struggling with reading--just *not* able to progress to anything past short-vowel, one-syllable words--I started reading about dyslexia again. One chapter in particular in Sally Shaywitz's new book "Overcoming Dyslexia" really reminded me of ds1.

That's our journey. Very best wishes on yours!

Thank you again for your thoughts on this, Valerie. I will tuck away that info on SMU. You are right, a trip to TX could be an option.

Through all of the digging I've been doing the last 2 days, I came up with Shaywitz's name. She is a pediatrician at Yale, right near here, but I don't think our Ped. can give me a referral to Yale Ped's that my insurance will cover. :(

It appears that Shaywitz is starting up (if it is't already) the Yale Center for Dyslexia and Creativity (http://kathryncrockett.com/clients/YCDC/About_ShaywitzBios.html) and I would love nothing more than to get to sit down with someone from that Center and just talk about what I see in my sweet boy.

[RebeccaC]

There are at least 3 types of dyslexia, vision based, language/auditory based, and cognitive (which has very little to do with IQ but with sequencing and short or long term memory ,ect....) The hardest to remediate are those folks who have issues in all 3 areas. The best place to start is a Neurodevelopmental psychologist but they will not test for vision issues and the vision issues that cause dyslexia will not show up on a normal vision screen. When we did testing in the mid 90s it $1,500 to 2,000 for standard testing with a Neurodevelopmental Psychologist and $500. to a $1,500. for Developmental Optometrist, $200 to $500. for SLP and around the same for Audiologist . However the best Neuro Psy doc in the area could run as high as $10,000. if she video taped all testing and was going to your child's school to be part of the IEP process.

We did vision therapy and FastForWord (which in the late 90s was very expensive.) All total we spent over $30,000. but that included, testing, travel to testing and therapy, a new computer and all the gadgets needed to do FFW at home, and meals out. We did FFW at home for over 9 weeks with me as therapist and the computer with both boys during the same 9 wek time period. I would work with one child and then the other. It was grueling and literally took all day long. The gains tho were greater than what normally happened in non home environment. Pace is another program that will run around $20,000. a year or at least that is what it cost when we looked into it. It is more for kids who have cognitive issues that are not covered by FFW.

We refinanced our home to do FFW since insurance would not cover it and our local school district did not offer it. My oldest would never have learned to read without FFW so I do not regret getting it for him. We had assessments done by SLPs, Developmental Optometrist, Audiologist, Neurodevelopmental Psychologist. We knew exactly what all our sons issues both in strengths and in weaknesses.

HTH

[Claire]

Wow! We did PACE (http://www.processingskills.com) about 7 years ago and it cost $2,500 then. Currently I think LearningRx (http://www.learningrx.com) centers charge about $3,500-$,6000 for their version of the program, assuming parents do the homework for the program. (The $20,000 I have heard quoted is only if a trainer does all of the one-on-one time with the child and parents do none.)

We did FastForWord about 7 years ago also. The software cost for FFW at that time was about $900. I did online training to become a provider (at that time, only about $200, but that option is no longer available). FFW was a waste of time for us because dd did not have auditory processing problems. I do think it is very valuable for children with certain types of APD.

[Claire]

An occupational therapy evaluation looks at vestibular development (rhythm, balance, timing) and sensory integration (visual-motor, auditory-visual, etc.). Many times auditory processing disorders will interfere with vestibular development. An OT eval, therefore, is useful for indications of APD and also of visual processing disorders associated with vestibular development. If you are not observing any physical problems, however, medical insurance will not cover the evaluation. I think ours cost around $500 about 8 years ago.

Again, unless you notice some physiological problem with speech (articulation problems, receptive or expressive language problems, word retrieval problems, language comprehension problems), insurance will not cover a speech and language eval. The thing is, no matter what prompts the speech and language eval, the eval itself will assess all of those areas plus phonemic awareness skills and decoding skills. Phonemic awareness delays are the single most common trait among dyslexics.

I have not heard anything good about Tricare. However, I think a couple of people on the Special Needs Board have worked through Tricare so they may have some tips for you.

Developmental vision testing is usually not covered by medical insurance. Where I am it costs about $200, plus an additional $75 for a written report of test results (not necessary unless problems are found). If a problem is found, though, more and more medical insurance policies will cover therapy. This coverage is found under the major medical section of insurance policies, however, not under the vision section where most people look. I have heard that unless vision therapy is specifically excluded under major medical, it is supposed to be covered. However, not everyone is successful at getting medical insurance to cover vision therapy. Plus, you need to get the evaluation first to even determine if visual efficiency skills are not age-appropriate.

[Valerie(TX)]

1) I'm not sure the OT suggestion seems plausible for my son. He definitely has no speech issues at all. And he doesn't have fine motor problems either. His handwriting is quite nice. < > I just don't see a connection to the issues my DS is having (reading and spelling).

2) We looked into our policy and none of the testing we would need to get answers here is covered. :(

3) IF there is a problem it's better to find out now versus later.


My responses:

1) There may not be connections to other things. Every dyslexic is different, and dyslexia may or may not come coupled with other disorders.

My ds1 had/has great fine motor skills, but there has been debate whether he is dysgraphic or not. He prints legibly, but writing takes up so much of his brain power that, at least functionally, he *is* dysgraphic.

He also has disorder of written expression. Personally, I think it is not *just* written expression, he has a hard time expressing himself verbally when he is under pressure as well, although he has a fantastic vocab, and people compliment him all the time for his conversational skills. However, I have also seen him stand there and let himself get blamed for all kinds of things because he can't pull together the thoughts to enumerate and express x, y, and z. I've also watched him have a hard time telling us why he should do X, when he clearly wants to, and we want him to as well. Sigh!

I know another poster mentioned several kinds of dyslexia, and there is some debate between different camps precisely what dyslexia is. I would encourage you to read Shaywitz' book. It gives the clinical definition, which relates most precisely to difficulty accessing and retrieving information from the language centers of the brain. My MIL was told she had "auditory dyslexia", and I understand that someone could call it that, because she had sometimes reproducing words when she was speaking. Parmesan was always "par-mee-zee-uhn", remoulade sauce was "rommelard", etc. She had no trouble reading, but was not great at spelling.

I digress....my point is to agree that there may not be OT or ST or vision issues associated, although there are for some. (None in our case.)

2) What I just mentioned above notwithstanding, I'll look into it from the dysgraphia standpoint the next time we pursue testing if ds2 is not making more progress in writing. Our HMO will not cover any therapies for LDs, but if he could come in through OT for that....???

3) :iagree: The earlier you are able to start remediation for him, the better. Language therapy will strengthen the "language wiring" in the brain if one can catch kids while they are young. (Pardon me for writing non-professionally; I don't want to write something that sounds professional when I can't remember exact terms and might confuse things if I tried. ;) )

Hopefully something here will help!

[RebeccaC]

Wow! We did PACE (http://www.processingskills.com) about 7 years ago and it cost $2,500 then. Currently I think LearningRx (http://www.learningrx.com) centers charge about $3,500-$,6000 for their version of the program, assuming parents do the homework for the program. (The $20,000 I have heard quoted is only if a trainer does all of the one-on-one time with the child and parents do none.)

We did FastForWord about 7 years ago also. The software cost for FFW at that time was about $900. I did on line training to become a provider (at that time, only about $200, but that option is no longer available). FFW was a waste of time for us because dd did not have auditory processing problems. I do think it is very valuable for children with certain types of APD.

We were among the first folks to do FFW when it went public. We paid the license fee which was $900 per child but there was a weekly fee of $150. per child plus pre and post testing. Then there was the computer which at that time had to be a mac with certain up grades, going on line, a zip drive, headphones, ect... FFW did not allow parents to be trained then so we had an SLP covering and she could charge a weekly processing fee at any amount she wanted to. We paid for two children for every thing. The SLP was quite a drive from our home seems like more than 2 hours. The vision therapist was an a little more than an hours drive from our home. We did all of our remediation in the mid 90s and were done with it by 99. Pace when it first came out also did not allow parents to be providers. For all the remediation we did it was around $30,000. I have no idea what the charges would be now. Bear in mind tho that our sons had something called LKSv and our oldest was mute at age 4 so our kids fell into the severe category for LD issues.

I do now that there were families with children on the Autism Spectrum who were doing 20 weeks of FFW here in the Chicago area at a certain SLPs center in the mid 90s. She had the families buy the computer that the child worked on, pay the license fee, and then an hourly fee of $150. They stopped doing that because the kids were not making meaningful progress or for some any progress and it was from those kids that they made the base line that a child had to have a language age of at least a 5 yo for FFW to really work. Those parents laid out around or over $20,000 for basically nothing. When FFW first went public there was a lot over charging that went on at least in the Chicago area. Last bit of medical info I read on FFW was that it worked best with boys under the chronological age of 10, who began FFW with a language age of greater than 5, who were on the Autism spectrum with APD problems.