Help: Delay in receiving psychology evaluation (New York)

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Hello everyone

We are new to autism because our son (23 months old) is recently diagnosed as having speech delay and ASD by an independent psychologist and a psychiatrist (back then we did not know about the state EIP). We are in Brooklyn, New York city.

Now that we have researched it and know that we should go through the state EIP to get the services for our son, we are told that the independent assessments cannot be used, and that we have to go through the evaluation done by some contractor of the state EIP program.

We are told that it takes 45 days from the date we initiate the services for the state to complete all the evaluations and have the first meeting (to conclude what services our son is entitled to and so on).

It’s been over two months since that first date, and we have had the first meeting 2 weeks ago. Our son has not had a psychologist evaluation (which is the big part of the evaluation, because it could determine whether he is qualified for ABA therapy or not).

At the meeting 2 weeks ago, they somehow arranged a psychologist to come and evaluate us (supposedly 10 days ago, but it’s a no show). From that day, we have been promised more and more that a psychologist would call or schedule a visit, but none has actually happened.

As you can imagine, we are both very anxious and frustrated with the process, and we do not know where to turn. Everyone on the phone seems to pass us around like hot potato and nothing gets done. Our son is currently receiving 2 hours a week for OT, and one hour for language therapy.

The independent psychologist and a psychiatrist assessments he had when he was 19 months old (4 months ago) strongly recommend that he have at least 20 hours a week of therapy (specifically ABA).

We would like to ask everyone if you have ever run into this kind of problem, and how you dealt with it?

We know that we could schedule a special hearing or write a complaint, but we are afraid that it would delay things further for our son. We just want the final psychology assessment to be done and then get on with the therapy.

Any advice you could give us is greatly appreciated. Many thanks in advance!

Yes, Public Services are very much like this regardless of the issue.

Like the saying goes, "if you want something done right you have to pay for it yourself".
If you have no money then you're kinda burnt -it's hard to make people care w/out money involved.

Keep pestering politely is probably your only viable option. That and pretend you're patient.


BTW 45 days is Superman Lightning Speed for any bureaucratic organization, and that's who you're talking to.
It's way-too-good-to-be-true fast.

We have paid for one independent psychologist evaluation (NYU doctor), and at this point we are willing to pay for another one. But it seems that the trick is to know that the psychologist is one that is contracted by the state DOH. for instance, the NYU doctor falls outside the system, sl even though all the OT/language/PT evaluators use her report as a base to conduct their evaluation of our son, her report is not accepted as part of the file and thus cannot be used to approve the ABA therapy for him.

columbia also does evaluations
maybe theyre better since its ivy
my 2 cents

You could seek an initial consultation with a special education advocate who is familiar with the early intervention process -- usually the first appt is free -- and find out what the most effective way of speeding things along is,

Doing a bit of googling, there are some local resources I would try:

http://www.advocatesforchildren.org/get_help/helpline

http://nyfac.org/contact/

I would also write to the school (don't call, make sure it is an email or a written letter) expressing your concerns about the amount of time being spent on the assessment and the 45 days. Write out the whole calendar of events (e.g. date of first contact and all the dates where you've had contact since, even if it is phone conversations or texts or emails) If your availability for a psychologist visit is in any way restricted, make sure you give them your schedule. Explain in the letter that you already have a psychologist's report with a diagnosis, so this delay is actually preventing a diagnosed child from getting services.

Copy the chain of command on the letter and make sure they all get one: find out who you spoke to, copy them, their supervisor and that person's supervisor as well.

For instance: in our case, when we have a problem with services at my son's school, we send a copy to the "team" (his actual teachers and his caseworker) and copy the vice-principal. If that doesn't work, we send a copy to the principal AND the district's social services supervisor for our area's schools. If that didn't work, we could still go one step further and copy the head of social services and the district superintendent. After that, you can always report to the state board, but at that point you are probably best off hiring an advocate and a lawyer.

The point is to make a paper trail that goes to multiple people in positions of responsibility, and to continue up the chain until you get a satisfactory response. If it's just a gaffe on the part of one person, then they can fix it. If it is a misunderstanding, then they can address it. Otherwise, you now have a paper trail that shows you are doing your due diligence as a parent, and that will be useful to an advocate or lawyer if it comes to that (it doesn't always come to that - sometimes it's just a glitch in the system.)

In the meantime, how are you doing with your son? There's lots of resources here and lots of things you can do while the state sorts itself out. Feel free to ask...

I don't know about the EI process too much. My kids were first evaluated by the CPSE. I have, though, dealt with service meetings (IEP meetings) a lot.

Be really persistent. Do not worry about being seen as pushy, this is one of those processes where the squeaky wheel gets the grease. I totally agree with momsparky. Write to everyone stating your concerns, go to the next level if you have to. Do not be shy. Definitely call advocates for children. I have called them before, and they were really helpful with a tricky situation with my older son.

The other thing is, if at the meeting you do not feel comfortable with the services being offered, or not being offered, do not sign. Tell them you would like to go into mediation, or need to get a legal consultant.

I know that free or low cost advocates/ lawyers for situations with kids with special needs exist in NYC. Advocates for Children could probably point you to one.

Good luck.

-Fitzi

Hi everyone
Thank you for your helpful tips and suggestions. We got his psychological evaluation about 2 weeks ago, but we are still waiting for his services to be authorized. It’s been over 3 months since we signed up for EIP. So the upshot is that we have sent a letter to everyone we can think of in the EIP. We will contact child advocacy after this to see what the next steps should be. Thanks again, and we will keep you posted.

Thanks for letting us know! Good luck!

We sent the letter 5 days ago and still nothing moved for a week. The coordinator seems to stop taking our calls. Now we want to consider the next step of requesting an impartial hearing, to which the “parent guide to intervention service” says we are entitled. But I have never done such a thing and I am very scared: will it slow everything down for our son? Will we be “blacklisted” in the early intervention system? Did any of you go through an impartial hearing before and could share your experience with us? Many thanks, and have a great weekend.

I have never requested an impartial hearing, but I don't think you should be afraid to do so. I am also in your neck of the woods, and the process over here can be infuriating. This is very much a situation where it pays to be an aggressive advocate for your child. I had a really annoying situation with the CSE in my child's public school and seemed to be blacklisted by them as 'annoying' and they (actually just one of them) was not responding to my concerns about flat out mistakes he made on my child's IEP. I went over his head and reported his behavior to his boss. She was awesome. Best thing I did. I also mentioned 'mediation' when he was refusing to grant my child services that his teacher, two doctors and the principle recommended. You will find that when you mention 'lawyer, mediation, impartial hearing', things tend to move. It sucks, but that's how it goes a lot. In the end, my son got what he needed and I just did what I had to do to help that along.

Have you called Advocates for Children yet? They are free, offer great advice and will be able to answer your questions and give you the correct language to use and direct you in the appropriate direction. They really helped me with my son's case.