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How do you go about getting more services for your child?

Moms View Message Board: Parenting Children with Special Needs: How do you go about getting more services for your child?
By Rcarbee on Sunday, March 14, 2004 - 08:03 pm:

Hello everyone...I introduced myself a little bit in the "Introduce Yourself Section" on this board. I have a 3 year old son with PDD-NOS. He went through Early Intervention for a speech delay. At 2 years he only said 5 prompted words. At 3 we were able to get a 2 to 3 word sentence. We started noticing echolalia at that time. The speech teacher mentioned something about Aspergers. She had a hard time getting him to cooperate for her weekly sessions. He was tested for the school system in the area of speech but his pronunciation was wonderful so he didn't qualify. We had no reciprocal speech at that time and the speech teacher had to rely on old reports because he had a melt down during testing. After worrying about it all summer and knowing that he would not fit into a regular preschool I called the school system again and had him tested for Autism. He qualified and received a diagnosis of PDD-NOS. We have been in the preschool system for special needs since December. They will not give him more than 2 days a week with 40 minutes of speech therapy a week. I found out last week that he was finally tested for OT and he qualified. He has not been tested for Sensory issues yet. The preschool teacher said he qualified for OT 2ce a month. We live in Alabama and I know the school system is hurting for money. Next year they are changing the preschool to a mixed preschool with NT and special needs. There will be a total of 15 kids in each class (which is a lot for a kid with sensory issues). This brings me to this point. What I want to know is how do I go about getting more preschool days and more speech and more OT. I am sort of thinking that I need to have a few doctors give notes stating that my son needs more services but I am not sure of how to word the letters. Is there an online form? How do you'all do this at your IEP meetings?

By Feona on Monday, March 15, 2004 - 07:24 am:

I am not sure how to get more services. Some said something about arbitration? Mediation?

I know people who get more services with their insurance company sometimes...

By Lauram on Monday, March 15, 2004 - 10:49 am:

Do you have health insurance? Does it cover OT/ SPL? Sometimes, I've found if you really want to help your child quickly, that's the best way to go. Also, they can then work as advocates for you child (IE the letter writing thing). You can always request (in writing) a PPT at any time. That would be where you would bring up the need for more services. It's always helpful to have an advocate go with you. You should also request a sensory test. SIPP I believe it is called. There are online form letters, if you search. Wrightslaw.com (I think that's what it is called) is a good place to start.

By Rcarbee on Monday, March 15, 2004 - 12:03 pm:

Thanks both of you. I also have been reading the NICHCY's website. I didn't think about the Wright's Law website. I feel like I am all so new to this and need to learn so much. It has been a struggle to get him where he is.

He should be getting a sensory test soon. We saw more behaviors yesterday at church related to sensory issues that stuck out at me. First, he held his ears when going by the bell. Then when all the people got out of classes he went from being calm to hyper. Last it bothered him in singing time when they went from soft singing to loud. We really have a problem at home with the food issue. He will only eat a few things and will not deviate from those. He is the same with medicine where he will not take tylenol or motrin but will only take one medicine...Robitussen Flu (of all things) because of the red color. He is the same with candy or sweets which I thought every kid loved. He will only eat white cake, white icecream sometimes and M & M's. He has a thing about soft mushy foods. It is sooo frustrating.

Sorry I am rambling and got off subject. I could go on forever with all the things he does.

One thing I know for sure is that I love him and he is such a cutie and he just makes my heart feel good! Thanks for your help!

By Feona on Monday, March 15, 2004 - 05:29 pm:

He really should get more services. He would get 3 times the services (Or more) if you lived in New York due to the diagnosis.

Can he go to regular preschool for 1/2 a day 3-5 times a week? I am a believer in getting them used to the stimulation of the regular classroom.

By Pamt on Monday, March 15, 2004 - 09:38 pm:

Hi there! I am a speech therapist and I work in an outpatient clinic. However, I did work in the school system for 3 years and still often help my private patients get additional services in the school. First and foremost, you will have to be the proverbial squeaky wheel to get your son more services. Letters from you, your pediatrician, and others who know your son and his strengths/weaknesses is a good place to start. I'd send them to the special ed coordinator and cc: to the principal of the school and maybe even the superintendant. You will have to plead your son's case. Also, find a local advocate (a free service) to help you get prepared to fight and then request an IEP or IFSP meeting with your advocate present. Discuss your son's needs and how they need to be met. It sounds like he could certainly benefit from more preschool. Based on his diagnosis I would presume that his social skills are lacking?? More structured interaction with his peers would certainly be of benefit.

There is a quandry with getting more speech and OT. The educational system has made more laws than they can keep up with. While every child has a right to these services, funding and personnel for them is lacking. Most public school SLPs have a caseload of 60+ kids to see a week. That is physically impossible, so the kids end up being grouped together and getting the bare minimum of tx time. Factor in all of the incredible amounts of paperwork involved and it is really very little one-on-one at all. That's the main reason I will never work in the school system again. Way too frustrating!! Find out how many children are in your son's speech group and push for one-on-one therapy. OT in school is even worse. Most OTs end up working on a consultation basis which means that they will see you soon twice a month and make suggestions to the teachers which may or may not be followed up on. That's why it's all the more important to have it all written down on the IEP which is a legally binding document.

To be truly satisfied you might really want to look into private therapy. With a diagnosis of autism, most insurance companies will cover OT and speech and if not you can always fight them. From what you've described your son does have some sensory issues and hit or miss therapy is not going to resolve them. He really needs intensive individual therapy. In the meantime, talk to the school SLP about getting in his mouth more and working on oral sensory issues so that he can ultimately improve his eating behaviors.

It is all so frustrating, isn't it? I am evaluating a little girl this week who is in danger of not passing first grade due to her speech problems. From talking to mom on the phone, the DD was getting therapy with 9 kids in a group!!!! There is NO way that is effective. More than 3 in a group is too many IMHO. Hope this helps and that you can get your DS the services he needs. BTW, I'm originally from Alabama and might be able to refer you to some specific sources for outside help if I know what area you are in.

By Rcarbee on Monday, March 15, 2004 - 11:03 pm:

Wow, that was a lot of help. I live in the Huntsville/Madison area. I do have my DS in a regular preschool as well. I did not get him in that till he was adjusted to his special needs preschool first and they said he would do okay. I found a great preschool that has a ratio of 8 kids to 1 teacher and there are only 6 in his class. They are more than willing to help me in anyway possible and learning about him. I would love to hear of resources in Northern Alabama. He goes to Alabama Phyciatric (sp?) Services for behavior. I got sent to them because I found out BC/BS wouldn't cover services unless it was refered by them. Otherwise they would only cover around 50 %. This is frustrating trying to learn how the system works. Socially he mimics other kids. He doesn't like it if they crowd him. They made a comment in the special needs preschool that made me feel real good. He is the only kid in there that is nice to everyone and knows something is off with a few kids but doesn't care. He is a real sweetie! I will have to find out if we can get some outside OT services. I know that his special needs class only has 5 kids in there. I think that his speech therapy is one on one or with very few kids. Next year it worries me that there will be 15 kids in the class. I can see overload at this point.

Okay...on the twighlight zone of things. Before I was pregnant with my son (which I waited 12 years for) I had a dream with this little boy that looked just like him at this age. He was silent in that dream. That was 2 months before I was pregnant with him.


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