My son, Matt, is 26 months old and has a developmental delay wrt receptive and expressive language. He has never been diagnosed with autism, and I'm 100% sure that he's not autistic. He also does not exhibit the behavioral issues traditionally associated with autism and is a well behaved child. Since mid-June, he has been approaching children that he sees in the community although he obviously does not know how to play with them or initiate play / conversations.
He has been getting Early Start since last August, and will have his annual IFSP review in the next two weeks. He gets 15 hours of ABA in the home, 1 hour of speech and 1 hour of OT since Feb. When his Early Intervention of 1 hour of EI, and 1 hour of speech weren't working, my service coordinator gave me various therapy models, and I dumbly picked ABA without doing my homework on it. Another reason I picked ABA was because it would be in the home and I thought that I wouldn't have to waste money on gas going to the place which specialized in intensive speech, instead. My husband had just lost his job and money was tight. That, probably, was the BIGGEST mistake that I've ever made in my life.
Fast forward to today and he has shown some improvement in his speech with his ABA. There are no "behaviors" to correct, so the ABA hasn't really worked for him. The service coordinator further told me that ABA would include speech but it hasn't helped. Since he has begun approaching other kids in the community (parks, malls, my older child's school etc), I have been pushing for center-based social groups.
Here is the REAL problem.
This particular agency has been VERY resistant to giving him center based services. They initially claimed that he wasn't ready. I asked them to "try" and they flat out denied my request. So, I talked to the service coordinator and she backed them up. At a clinic meeting yesterday (our last before his IFSP), my son's program director told me the following:
1. The Regional Center won't pay for center based services because it's more expensive than home based services.
2. The agency has kids who are MORE severe than my son in their center programs with one-on-one aides and one more child would disrupt their existing program. Frankly, this isn't my problem. I don't care about their center's problem. If they can't accommodate my child, then I want a change of agency - to one that *will* give my child a chance.
3. The agency will insist on keeping the same number of home-based hours even if he gets center services. Pretty much, it means that they want their money either which way, even if the ABA is clearly not working for my son.
I have had a very hard time with my service coordinator. She is difficult and she herself is pretty resistant to helping me change agencies. I did not like the EI that my son had and demanded a change back in Feb when more intensive services were recommended. So, now, she states that I cannot change agencies yet AGAIN! My attempts to tell her that I'm requesting a change because I need an agency that will offer my son a chance to socialize in a monitored group settings has fallen on deaf ears.
So, here's the deal. I don't even want to have the IFSP as I am already aware of what they are going recommend. More 100% home-based ABA. Should I email the service coordinator and tell her that I'm expecting a hybrid program and will not agree to an IFSP that will not offer such a program? That it would just be a waste of time to call the IFSP even?
Where should I go from here? I do have the service coordinator's supervisor's phone number... but I don't want to go to the supervisor right away.
Please help me. I'm struggling here and fighting not only the agency but also the service coordinator. What should I do since I know I'm going to disagree with the IFSP (written to suit the agency's agenda)?
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Help me - disagreeing with proposed IFSP.
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8/1/11 at 12:53pm
- SpottedFoxx
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Fight - You've tried to work with the people who are supposed to be helping you and you've only gotten resistance - it's time to move on. Â I'd go right to the supervisor. Â If you get no support from the supervisor, it may be beneficial to see the input of an attorney. Â Wrightslaw.com has amazing resources to help you fight IEPs and I believe they may be able to recommend an attorney in your area (if you are in NJ - I have a wonderful one).
Â
I'm sorry you are going through this but keep up the good fight - your little one is worth it!
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