Help me... disagreeing with my son's proposed IFSP
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  1. #1
    HelpMe is offline Junior Member Newbie
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    Jul 2011
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    Default Help me... disagreeing with my son's proposed IFSP

    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. 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 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)?

    Help me, help me, help me. Please.

  2. #2
    tigerrose is offline Junior Member Newbie
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    I had a similar situation but my son was much older. My son was 4 when I started noticing problems with his learning. When I got him enrolled in school, I fought with the school system for an entire year to get him tested and finally called the superintendent of the school threatening to contact the state. Within the first week after my phone call, a person was called in to start testing him. He was diagnosed with expressive, receptive learning disorder. I knew there was something else but couldn't quite pinpoint the problem. Again, I fought with the public school time and time again. Finally at age 7, he was re-tested after I complained non-stop, but the only thing he got was just more hours per week with reading and math help but they told me in order for him to get more assistance that they had to add the diagnosis of Emotional disturbance, which neither I, or the teachers agreed to the diagnosis, because my son was an extremely happy boy. After switching schools, around 9-11 he was given several other tests but they seemed to drag their feet. As stubborn as my husband and I were, we marched in there and told them that there is still something wrong with his learning. Thankfully, his reading comprehension teacher was seeing what I had been telling them all along. She fought along with us to get him tested specifically for autism. We found out at the end of his 5th grade year that he was diagnosed with educational autism and we later got a diagnosis of Asperger's from his physician. Ok , now that makes sense. It was a fight up hill all the way with the school system but we persevered. With the new diagnosis of Aspergers, he was able to get more help, (they dropped the Emotional disturbance diagnosis which was long overdue). When we found out that he was going to go to 6th grade and lose some of his one-on-one help due to the lack of teachers, and the fact that his weakness was math and language and his schedule was for both of those subjects at the END of the day, we decided to pull him out of public school and home school. This is my 2nd year of homeschooling and he is 13. I can tailor his curriculum just for him. He was 2 grades behind when I started. I caught him up an entire grade last year from homeschooling. There is no better teacher than his parent.

    Here is my point: If you disagree, get a second opinion or third if you have to. I would write a letter instead of calling so that you have a paper trail. Make copies of the letters and send them certified mail so its legal. No one else is a better advocate for your child except for you. Fight for your child. I did and I eventually had to take matters into my own hands since the public school system is drowning and so many children are just pushed through the system without an adequate education. Get a note from your physician recommending more help. If it is a state agency, go to the top. Keep writing letters and call. Log everything. If you bug them enough, somebody will eventually cave and give your son the help he needs. Good luck! Prayers to you

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