I have 2 year old twins.
My DD is ASD, diagnosed a few months ago. In June she started at a WONDERFUL program, 20 hours a week, incorporating speech, OT, ABA and social skills. She is making SO much progress.
In August my DS was diagnosed as PDD-NOS and we're being told that he doesn't qualify to be in the program his sister's in.
I see on here a lot that people don't get as many services with a dx of PDD-NOS. WHy?
Thanks!
TWINZROCK
You know, it never ceases to amaze me that the so-called experts who are supposed to be helping to deliver services to our children in schools aren't that familiar with autism. I don't expect every single person to understand, by any means.
But how difficult can it be to get someone qualified/trained to understand ASD (in all its forms) so that parents don't have to go through this? I don't get it. Most of us here -mere "laypersons" in many people's minds, understand that severity of symptoms aren't limited to one diagnostic category, i.e. classic autism. That folks with Asperger's and Rett's and PDD-NOS can often need as much (if not more!) services than a child with classic autism.
I mean really! Sorry for the rant, but it really burns my britches that kids like my son can get what he needs without any fighting on my part, when parents whose children have similar issues but a dx of PDD-NOS or Asperger's have to fight tooth and nail to get services. It isn't fair...at all!
ETA: I understand that sometimes it's a matter of funding and not really dx. In that case, perhaps they ought to be evaluating what services to provide based on the child's actual needs, and not some arbitrary label instead. Grrr.
Because a PDD-NOS diagnosis gives the impression that they don't have "full" autism. They only have a few of the symptoms or some are to a lesser degree. I would maybe get a second opinion on the PDD-NOS diagnosis for your son. I have not before heard of fraternal twins (boy and girl) where the girl is the more severely affected. I wonder if they aren't seeing some of the symptoms in your ds because they are putting it off to "he's just a boy and boys develop slower" ? I mean, I'm no expert here - but I just wondered.
We have been lucky enough that my ds' PDD-NOS diagnosis so far has not disqualified him from any program we have sought. We wouldn't have gotten ABA even if he had Asperger's because our insurance didn't cover it and our school district doesn't provide it. Well, maybe they do to kids with "severe" autism, I'm not sure. I haven't heard of any child with mild to moderate autism getting ABA paid for in our old school district. I don't know what the new school district does in terms of ABA - I doubt if they would give it to him and I'm not sure he would need it at this point. The ASD teacher is going to start doing some RDI stuff with ds in the next few weeks and I think that will be very beneficial to him!
But, I have heard of lots of cases where kids get a PDD-NOS diagnosis and thus are excluded from lots of services that they might need. We haven't applied for TEFRA because I'm not sure it's worth it to us. If our new insurance starts trying to deny claims due to ds' diagnosis, then we may have to pursue it - but that is something I'm not sure we'd qualify with because of his diagnosis. TEFRA is basically getting Medicaid but you have a co-pay based on parental income. You don't qualify for TEFRA based on income - it is based on the child's disability - but then you pay in a certain amount based on your income - if that makes sense! In Southern Cal. It is better to have an autism dx versus PDD-NOS. I would
fight for those services if I were you because the need is still there. I have
friends who had to fight to get services for the PDD-NOs child. I would also
get an independent evaluation for yr child. The reason that they deny
services is because there is a high demand for services and it is very
expensive to provide it.
For what it's worth, where live (IL) the dx is irrelevant for school purposes.
In order to qualify for services through the school system (EI or otherwise), the child needs to qualify through a "disability category" (often referred to as a "label"). My son qualifed for services under the category "developmental delay" starting at age 2. Where we are that label "expires" at age 6. At age 6 my son's category was changed to "autism." His medical dx is PDD-NOS but that doesn't matter. We only have one category - "autism" - and everyone on the spectrum qualifies for services under that label regardless of PDD-NOS vs. AD vs. AS.
On the spectrum is on the spectrum. It seems nuts to me that they would use PDD-NOS to disqualify.
Well for TEFRA it is totally different. You have to prove that the disability significantly interferes with daily functioning and their ability to develop/implement daily living independent skills. I don't think ds would qualify because we have worked so hard on his daily living skills. We are just in between - ds does need some services, but probably not enough that the state would qualify him and therefore, help pay for some of the services! Thankfully, our new school district is REALLY stepping up and doing a lot for him so far. Hoping it continues!
A lot of it is about funding, unfortunately. It SHOULD be about the kiddos being given an appropriate education that helps them learn and develop to their full potential. Unfortunately, there are not unlimited funds to do this and school districts do have to draw the line somewhere. Medicaid does as well. Unfortunately, we end up being barely on the other side of that line a lot...
Had to laugh in the sarcastic way - My actual first comment was 'Oh my I don't believe this'. My son is 9 1/2, no different this year than last year (with exception to the new dx). My son has struggled with many issues during school and I could NOT get him an IEP. First week of school last year (he was in 3rd) I had my first parent/teacher conference due to issues that concerned the teacher. This year was no different. Just had my first conference last week (believe it or not the same concerns the teacher had in 3rd grade). When I mentioned to her that this past summer he was dx'd with the HFA and ADHD right off the bat she asked if he had an IEP. I almost dropped to the floor as since 1st grade I have been trying to get him an IEP at this school. This Wednesday is my initial meeting - I will let you know how it all goes.
Labels mean everything unfortunately to get anything in today's society - let it be at school or services thru the state. It is really SAD!
Our regional center would not give dd services. They will service for PDD-NOS but you have to fall into MR range in x number of areas to get the services. I have also heard that qualifying for SSI can be hard with a PDD diagnosis.[QUOTE=ALABAMA G-MAW]I have also heard that qualifying for SSI can be hard with a PDD diagnosis. [/QUOTE]
Brendon qualified with a PDD-NOS diagnosis within 2 months of applying. We didn't get the diagnosis of autism until 3 months after he started getting SSI.
[QUOTE=Evie]You know, it never ceases to amaze me that the so-called experts who are supposed to be helping to deliver services to our children in schools aren't that familiar with autism. I don't expect every single person to understand, by any means.
But how difficult can it be to get someone qualified/trained to understand ASD (in all its forms) so that parents don't have to go through this? I don't get it. Most of us here -mere "laypersons" in many people's minds, understand that severity of symptoms aren't limited to one diagnostic category, i.e. classic autism. That folks with Asperger's and Rett's and PDD-NOS can often need as much (if not more!) services than a child with classic autism.
I mean really! Sorry for the rant, but it really burns my britches that kids like my son can get what he needs without any fighting on my part, when parents whose children have similar issues but a dx of PDD-NOS or Asperger's have to fight tooth and nail to get services. It isn't fair...at all!
ETA: I understand that sometimes it's a matter of funding and not really dx. In that case, perhaps they ought to be evaluating what services to provide based on the child's actual needs, and not some arbitrary label instead. Grrr.
[/QUOTE]
OMG u have nooo idea how much I agree with u in every single way. I mean gah! I have been fighting for a YEAR yes a whole YEAR if not more actually to get my son the services he needs. And let me tell u the school "experts" in my area seem to be labled something they should not be, ie "autism expert", pfft I object.
My son has a PDD-NOS with mild MR. If he did not get the mild MR we would be in the hands of the Area Education Services...which in my area means you are on your own. Right now they see my son for only 1 hour a week. I have been making sure that I do nothing to set him off before they come so he can have a successful time with the therapist. However, that back fired when they said he was improving. I think he is getting worse.
I am still in the process of getting all my paperwork completed for Medicad. That will help us get speech, OT, PT, ABA, ect. There is a 1 year list for ABA though. So I have taken it upon myself to buy books on it and there is a conference that helps parents with the basics of ABA.
My son is verbal and can follow instructions, however, when there is a light on or the doors are not in order and there is not another stim in his way than it doesn't matter...all he will say is light on...no matter what you do to get him to listen. Tantrums are still out of control due to his severe ritualistic ways. Taking him anywhere in public is getting harder by the day..so if someone is telling you that your child does not qualify for services than let them shadow you for a day and see just how acceptable it is for a child be in pain because they are in an unfamilar place. I wish you the best.