So frustrated about being declined for Early Intervention!!!

amother

Lawngreen

Mon, Feb 06 2017, 2:39 pm

So I've had some concerns about my baby's development and discussed them with my pediatrician. I mentioned that I didn't know if I should be concerned yet and she said that I absolutely should contact EI and get an evaluation ASAP. (My mom has also been on my back that she is worried bla bla bla). So I called for an eval, needed to take a day off work for it, and got declined. (Great news Smile

) But I wasn't even declined for being in a gray area! My child is solidly in the curve for every single testing area. Sure, he is below average (as in between -1 and 0 instead of between 0 and 1 for each area) but nothing that is in any way concerning. How could my pediatrician have been so far off base? Why would she be concerned when my child is doing just fine? I'm so frustrated!!! I knew that we were a bit behind, but I didn't think it was a big deal until she said that I really should look into this. What a waste of a day and what a shame. Its things like this that make me slowly slowly slowly lose trust in the establishment.

I know, I really shouldn't be angry, and I probably wouldn't be if it was a close testing situation, but to be so solidly average - sorry!!!

Miri7

Mon, Feb 06 2017, 3:19 pm

Take a minute. Think about this. You could have found out that your child has profound issues, and would require many hours of interventions and treatments. You're really upset to find out that your kid is solidly within the normal range and won't require intervention?

Just because your child doesn't require the intervention does not mean that testing wasn't warranted. The tests are administered to kids whose development warrants testing to determine if they are truly within the "normal" range or if intervention is warranted.

Yes, it's frustrating to take a day off of work for kids appointments. But - think this over again. Would you rather have gotten a different result? How would you have felt if your kid did need the early intervention but your pediatrician didn't send him for testing, so he didn't get the help he needs.

I'd be happy to get this news.

amother

Sapphire

Mon, Feb 06 2017, 3:19 pm

Sometimes, it's not clear to the pediatrician whether something is average or not, and it's only clear with further testing. He may have been sure you needed the testing, but that doesn't mean he was sure there was a problem.

Also, it is much better to be sent and then be told your kid is fine, then to wait and see and find out you missed the earliest opportunity for intervention. It is never a waste to check in about your child's health and development.

amother

Lawngreen

Mon, Feb 06 2017, 4:15 pm

Ok, maybe my frustration is over the top. But I see my child every day. I knew that we weren't talking about some major delays. My child just isn't moving as much as my other children were at this age. If I would have been approved for physical therapy, I would have been happy to give him a boost. Was just frustrating that my pediatrician seemed to be concerned, and I can't do anything more than I already have been doing already - and I'd expect her to know that this was in range...

SixOfWands

Mon, Feb 06 2017, 4:59 pm

amother wrote:

OP, in your first post, you said

Quote:

So this isn't a situation in which your pediatrician raised concerns that you didn't see. You told the doctor you were concerned. She recommended that you follow your gut.

In any case, EI evaluations exist because pediatricians are not necessarily experts or even qualified in evaluation, as opposed to screening to see if a child should be evaluated. Your child is behind, albeit within normal bounds, on all factors. It sounds like evaluation was a good idea, to see if he was just a slower developer, or if other things were at play.

Be grateful. And move on.

SplitPea

Mon, Feb 06 2017, 6:57 pm

amother wrote:

Keep in mind your child has a couple 1 standard deviations from the mean had he had TWO 1.5 standard deviations he would have had therapy in both areas. Often times even the assessor does not know how a child will score until they score them so how would a Ped who sees them for such a short time? Honestly most kids with a -1 NEED therapy they just don't qualify. especially if your child is near a "milestone" birthday (ie 17 months and not 18 months) etc those things change the score and can change it a LOT. Don't blame your pediatrician. Honestly if your child is still delayed in 6 months I would get restested even if it waists a day because it tells you where you are holding and can't ONLY help.

amother

Fuchsia

Mon, Feb 06 2017, 7:42 pm

I had some concerns about my infant. My ped told us to get him evaluated. He was denied services. Over the next six months the issues became more pronounced. At that point we had him reevaluated and they found more areas he was lagging in then we had noticed. He was approved and given much more services than had he been originally approved.

Keep an eye out for the next year. Your concerns may go away or become more pronounced.

amother

Yellow

Mon, Feb 06 2017, 8:02 pm

I agree with Sixofwands....it sounds like you came into your pediatrician with various concerns and he sort of took the easy way out (or better safe than sorry) and told you to go for an evaluation since your so concerned. I really wonder if the pediatrician, ON HIS OWN, without any prompting or suggestions from you, noticed something that warranted an evaluation.

amother

Burlywood

Mon, Feb 06 2017, 8:53 pm

I'm not getting why you're so annoyed with the doctor. The tests they do during an evaluation are much more thorough than they could do during a brief office visit. Without doing all the testing the doctor could not tell you exactly where your child falls on the scale and if they're truly delayed. Good thing you got the testing and good thing you found out there are no delays.

Let's say you brought your child in with an injury and the doctor recommended an x-ray. Would you be annoyed if the x-ray showed no fracture? Would you feel you wasted your day?

acemom

Mon, Feb 06 2017, 11:00 pm

As others have pointed out, you should be happy about your child not testing as having issues, not upset about the time wasted.

On the other hand, if you are still concerned and feel child is lagging behind in some areas, maybe have him evaluated privately by and OT, PT or other specialist in the area you feel he needs help? To me it seems like the DoH is declining (free) services because the child doesn't fit the criteria, but if a parent is so concerned about something, trying to get the therapies paid through insurance or privately is another path to take.

GOOD LUCK

amother

Maroon

Tue, Feb 07 2017, 12:28 am

Maybe u r upset bec u built up this case that he needs services and were all busy with it and u felt imprtant? Maybe it doesnt have so much to do with baby, but with u?
Honestly, relax. Bh for kids who dont qualify. As a therapist, most kids do qualify if flagged so most probably ur kid REALLY doesnt need. And ei is no picnic- my kids all cried through it. One child barely needed so I discontinued and other one was lagginh developmentally so I kept, but u do realize u need to be conscious of therapist coming all the time to ur house at diff times? Its annoying if ur kid doesnt really need it.

amother

Burlywood

Tue, Feb 07 2017, 12:34 am

I want to add that my child has real developmental disabilities (Down syndrome) but because of all the parents jumping on the bandwagon demanding therapy for even the slightest delays, it's become harder for ALL of us to get needed services. They are incredibly stingy and make us jump through hoops to prove that she really is delayed and needs services. And they won't accept that she is at risk for delays and that's why you need services--you need to show that she's delayed NOW. But isn't that the point of EI--to give the services early so she doesn't become (more) delayed?

Anyway that's my rant that may have nothing to do with you. And of course everyone whose child needs services should get them. But keep in mind that there's a huge difference between NEEDING services and wanting them just because you think your child can benefit from a little push.

amother

Firebrick

Tue, Feb 07 2017, 5:17 am

amother wrote:

I don't know how it works elsewhere, but if your child has downs syndrome in NY, he would automatically qualify for EI services. At the meeting you can advocate for him and get whatever services you want, even if he wasn't tested, or didn't qualify in that area. You just have to explain why you believe it is necessary. It is helpful to have an advocate.
(I got my son PT when the test results said he did not qualify, because as a mom, I know that he needs it, and he qualifies for EI already in other areas).

EI is not to prevent delay. It is to help children who are delayed. All of those parents who are jumping on the bandwagon, have children who actually qualify for services. (Unless they had someone commit fraud for them during the evaluation process).

MyUsername

Tue, Feb 07 2017, 5:52 am

amother wrote:

. . . and she said that I absolutely should contact EI and get an evaluation ASAP.

It sounds like your pediatrician didn't say your child has a problem, but that your pediatrician said your child should be evaluated. That is good practice, and a pediatrician who takes your concerns seriously is really important. Only testing can tell for sure whether there is a problem or not, and the responsible thing for your pediatrician to do was to rule out a problem. How would you have felt if you thought there might be a problem and your pediatrician brushed you off? A pediatrician is not trained to definitely diagnose developmental problems, they are there to know when it is worthwhile to refer you and when it isn't, and it sounds like she did her job. Just because the testing said your kid was fine, that doesn't mean your pediatrician was wrong to send you for testing.

I know it feels like a waste to take your kid to be checked when everything is fine, but think of it as the same as bringing your kid to a yearly physical at the pediatrician, a periodic eye exam, a dental check up. These are the things we do once in a blue moon to make sure that our kids are really healthy, even when it's obvious to us that they are. If your kid had a toothe ache, and you brought him to the dentist, and the dentist said everything was fine, you wouldn't feel like it was a waste, because ruling out a problem is just as important as diagnosing a problem in keeping our kids healthy.