CP diagnosis and EI

Has anyone has a CP diagnosis while in EI? I'm getting mixed answers on what services my DS should be getting and was wondering what the norm is? I felt like we weren't getting what he needed when he was just "delayed" & now that we've gotten the official CP diagnosis they haven't changed the services even though I was told he was entitled to more with the diagnosis.

Re: CP diagnosis and EI

You're not entitled to more with a diagnosis because present functional levels are what drive services. CP is not a regressive disorder, but there is always a risk for loss of range of motion with increased tone. What services does you DS currently have? How old is he and what are you looking to get for him? What king of CP was he diagnosed with?

Re: CP diagnosis and EI

The problem with services is that I had to fight to get him what we are getting with him considered delayed.
He's 19 months with mild spastic diplegia. He does not talk. We've been getting services since he was 14 months. PT 2x a week. We never qualified for speech as his receptive is high and expressive is little to none. Since he doesn't talk we've taught him some signs for certain things and that disqualified him from speech. In order to pacify me and after fighting for more he only got recently approved for a special ed teacher to come 1x per week to work on sound production. Both me and the teacher think he needs a speech therapist but we can't seem to get one. Which the physical therapist was pushing for me to get a diagnosis I thought it would help in getting him the services he needs. While yes they are still based on each child's needs there are still certain services that with a specific diagnosis they are considered the norm if you need them.
Honestly I do not think the physical therapist does much for him. All of his exercises etc I can keep in doing. It's up to his ortho and neuro to decide on the braces. It's more the other things that go along with it, the speech delay is my main concern and also he has a lot of sensory issues that may need to be addressed also.

Re: CP diagnosis and EI

CP diagnosis and EI

I'm so sorry to hear about the CP diagnosis. Unfortunately, EI is not a medical model program. It is a developmental model. Therefore, there needs to be delays with hitting developmental milestones in order for services to be granted. With the CP diagnosis, unfortunately, there will be developmental delays. However, it may take a bit for them to start to lag behind. Have his current therapists continue to monitor his development and then ask for an amendment in a few months, if/when, your therapists can justify an increase in services. But the medical diagnosis itself does not, in and of itself, justify the increase/change in service
As for speech, the standardized test that is used to assess current function changed fairly recently so it is a bit harder for a child of your son's age to qualify. Have him re-evaled for ST when he is 2. He'll have a better chance of qualifying
In terms of sensory, it will be difficult to qualify for OT on sensory alone. He will need a delay with fine motor as well

Re: CP diagnosis and EI

My son is 23 months with mild spastic Diplegia. He qualified for speech at his initial evaluation. I am glad because nearly a year later he is not speaking and was diagnosed with dysarthria, a motor speech disorder commonly associated with cp. Here's the thing - technically a diagnosis isn't supposed to matter in regards to services but it does. We were in EI for 6 months before he was diagnosed and after the diagnosis I called my coordinator and after a big conf call with the state I got increases in everything. You have to constantly reiterate that cp commonly has associated disorders or conditions that can affect speech and fine motor. I kept saying that the hallmark of spastic diplegia was impairment of all four limbs with the legs worse than the Arms, but the arms are typically clumsy and that is what I was seeing with my son. We got OT after that. As far as speech, I kept saying that I was concerned that my sons speech delay was due to oral motor issues commonly associated with cp. We got an increase after that. My son dropped percentiles in weight after switching to table food and while it was concerning it was not a disaster - yet! I said that I was afraid that his difficulty with solid food was related to oral motor weakness coolly associated with CP. I got nutrition twice a month. You get the idea. The truth is mild CP does have a lot of other mild conditions associated with it. Keep reiterating the diagnosis and it's implications as It relates to your son. Cooperative therapists help too! Keep trying and good luck.

Also don't be afraid to switch agencies or coordinators or to just in general be a PITA.

I also wanted to ask where you are located? I have had a relatively easy time of it here in NYS. Maybe my son is a bit more involved than yours is, but he is considered pretty mild too and I still didn't face much opposition. Feel free to pm me, our kids are similar ages with the same diagnosis, I would love to chat!

Message edited 5/29/2014 12:17:18 AM.

Re: CP diagnosis and EI

Double post

Message edited 5/29/2014 12:11:37 AM.