Special Needs

How do I find an advocate?

I talked to Chris' PT about what was going on with his school district evals.  She suggested finding an advocate to help us in the IEP meeting.  Every level the school has for him is a year or so under where EI has him.  I don't care about the actual level itself but think that EI would know him better since he's been with them for a year and a half.  His PT has been with him since last December (09).  I'm concerned that the district having him at different levels will impeed his ability to recieve the correct combination of services through them.  I understand that there are some services that we will be looking to get outside of the district like OT since our district doesn't believe in sensory needs.  *Just wait until the kid is in a classroom of singing kids OR in the lunch room with the halogen lights, crowds, and noise and let them think that sensory needs aren't impeeding this kid's day!*  I just really can't afford to do speech, PT, OT and developmental outside of school.

Re: How do I find an advocate?

  • I'm not really sure how you go about finding an advocate - maybe check with other parents in your area? I did want to say that pretty much across the board sensort needs aren't really documented in schools. I'm an OT, currently working at a pediatric clinic, but used to work in the school system. We could never have a child on our caseload just for sensory needs, but if there's any other reason that he needs OT (fine motor, self-help, visual perceptual, etc) then I'd still work on his sensory needs while doing everything else and I'd be giving sensory diet-type ideas to his teachers. Just a thought in case that's how it would work in your district.

    I think until sensory disorders are in the DSM they aren't going to be recognized by schools or insurance companies. It's sort of the hidden therapy of the OT world in that sense. Even in my clinic now, most of my kids have sensory needs, often major ones, but for insurance purposes I have to document all the other stuff as primary and downplay (though of course still document) the sensory needs. If insurance thinks it's "just sensory" then they won't cover it, just like schools don't look at it as a reason for an IEP Sad

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  • i lived in northern NJ (not sure where your at) and there were school social workers.  Maybe try to give them a call?  Usually they're pretty good at setting things like that up.  A friend I knew had sever learning disabilities and the social worker was the one that always checked in with her and made sure she was doing okay and if she needed anything else help wise.
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  • He's going to get 1 30 minute session of OT to address the fine motor issues but it was documented in his evaluation results that there were no sensory concerns with them.  I told them about his needs with lights, loud noises, crowds, slimy, sticky, etc and she didn't document any of them.  We live in Central NJ.
  • And, his diagnosis is a 16p11.2 duplication and PDD_NOS.
  • IEPs with advocates and those without have a night and day difference in my experience. I strongly recommend that if you're having trouble you go that route. Also provide loads of documentation both to the advocates and to the team. This is how many words he has. In three one hour samplings at different times, he said an average of x words. These are the fine motor skills that a typical kid will be expected to do. When attempted with his OT on XX dates, he was able to perform those skills XX% of time. Also consider that if his sensory seeking leads to behaviors that those some how get addressed in the IEP. I've sometimes seen people do that as a way of getting those sensory seeking behaviors addressed. Heck! Even if you let them go a month and see the behaviors themselves and then they'll need to do an FBA and realize that they're checking "sensory.... sensory.... sensory". Don't feel like it all needs to be set in stone on day 1. As much as its our instinct to want that. It won't happen. Even in a best case scenario. And in some cases its better to let them figure out his issues 2 months into it and have it come from them.  

    1. Visit the yellow pages website for your state and look for an educational advocate.

    2. Every state has a parent training center. I think you're in New Jersey. Did a quick search and found this parent advocacy program. I don't see anything specific to education on there, but you could give it a try and see. If nothing else they should be able to refer you to the right person: https://www.spannj.org/ 

    3. Contact a local autism support group and ask parents there for recommendations. You can find these through the Autism Society website, or yellow pages, just to name two ways.

    Wrights law is also a really good resource.


    That's where I got these from tonight. I've never had the opportunity to go to one of their trainings (almost!), but hear they are awesome. They also have some books, but if you're like me you don't have time to read about how to help your kids... you just need to jump in and get going. 

    Hope you're able to get things figured out for your little guy.  

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  • Do you have a local chapter of Parents helping Parents in your area? They are great at helping find resources.
  • I do belong to a parrent support group but it is more of a friend who runs it.  We are still fairly "new" with the diagnosis as he was diagnosed in February.  I called and found a support group for parents of autistic children but I was uncomfortable with the people running it.
  • I found my advocate through a personal referral. The director of special education in my district gave me her name. The advocate belongs to a The federation for children of Special needs (I'll have to double check the name of the organization). Also, in my state it is law that if you ask, the school system must give you a list of advocates in your area. I'll find out the name of the organization and reply back.

    Getting an advocate was the best thing I ever did. She knows the laws and the way the school system works. 

  • Not sure if this is the same in all states, but we have OCRA in California. They are free advocates that help you with getting services, they are real lawyers.

    The main hub is in San Francisco and they give you a name of your local advocate you can call. Again - not sure if this is available nationwide, though.

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