Last year, my son's IEP included pool time with his physical therapist. He spent at least 45 minutes per week in the pool with her, and usually some other pool time with other after school activities and he THRIVED. It was a huge confidence builder and his PT said it was great for his body as well.
Over the summer, our school district demolished the swimming pool. At this year's IEP meeting I requested that the school arrange for time in a nearby pool to continue Aaron's pool time. They've declined because it is not an educational necessity. (I think it does help his education...he's undiagnosed, but I strongly suspect ADHD and days with physical activity seem to help him focus. He gets adapted PE outside of the pool, but he's just not on nearly as "even ground" with his peers outside of the water...)
I haven't received a copy of this year's IEP proposal and haven't signed it. The school has turned down my request to continue pool services stating that those services are not education related. What should I do? It's a big deal to me that Aaron continue to have an outlet for his swimming abilities...there are so many things about DMD that steal his confidence. I don't want this taken away too!
Our boys have a local pool visit twice per week written into their IEP. The benifits of regular pool visits are incredible. Try to advocate to get this writen into his IEP. It is an educational right for physical education (PE) not to mention the health benifts. Get support letters from your doctors and therapists.
When children are younger and covered under Part C of IDEA (Age 3 to kindergarten) there is more flexibility in the services a school provides. After a child ages out of Part C these services often change abruptly. Also when the school has on site access to a pool rather than having to pay to transport a child to another location as well as the additional fees, administrators would be more amenable to offering the service. In some instances Special Education administrators may tell parents something isn't educationally related in an effort to avoid providing an expensive service causing parents to resort to hiring an independent evaluator, appealing a decision and/or going to mediation. Other times they are correct that the service a parent wants just doesn't meet the criteria no matter how right it seems. This may or may not be the case, but it gives you an idea of what you'll face.
There are several options to consider. Possibly the least expensive option is to accept the school's position and take your son to the YMCA on your own. You could also hire an independent evaluator to determine whether your son has ADHD as well as seek the basis for aqua therapy (As you know, a parent's certainty that there child has undiagnosed condition is not enough evidence for an IEP Team to change a plan.) and/or hire an attorney or Advocate familiar with Special Education law to help you sort through this. Even if your son is evaluated by another person besides the school's evaluators they may choose to not accept the findings which can lead to appeals and mediation. A brief article about choosing an evaluator can be found here: http://www.fetaweb.com/help/eval.expect.meyer.htm
If Physical Education is a school requirement, swimming might be justified as an alternative form of adaptive PE. It may simply take a prescription from your son's doctor supporting this as an appropriate substitute. It is possible the IEP team may disagree. Check with your son's physical therapist for guidance.
Another place to start is with your state's Parent Training and Information Center. These centers are federally funded to provide training and guidance in navigating the Special Education system. In some situations they match parents with other parent advocates who may be able to help them at IEP meetings and in choosing options based on training and experience. To find the center in your state go to: http://www.yellowpagesforkids.com/help/ptis.htm
There is no question that finances play a great role in determining what services are provided. Additionally, the more involved and diligent parents are often more successful in obtaining appropriate services for their child. Unfortunately working to obtain services for your son may take a lot of work. Only you can decide whether it is worth the effort and time. I wish it was easier.
Best of luck,
Thank you to all of you for your replies. I just don't know which way to go here. I hate to deprive my son of a physical outlet that was clearly doing him so much good physically and mentally, and yet I doubt that my family has the pocketbook to fight the school. Unfortunately, we don't have a local Y (the nearest is 30 miles from home, and 30 miles in the opposite direction from where I work :( and I'm actually not even sure that they have a pool, though I'd think they must...no one's ever discussed it with me) and the closest option for me would be a hotel pool about 10 minutes from my home, but I know that they charge to use the pool, plus I wouldn't have a professional to work with Aaron unless I can afford one out of pocket. I wish I had the money to fight, but if I did I'd just buy a pool and a therapist. :(
I had similar problem when my son was in elementary school regading his aide. We got a prescription from MDA clinic doc, and took the matter beyond the IEP team. Had to "suggest" legal action was our next step, which was a complete bluff we had no legal budget. They blinked first and he got his aide.
The lesson I took away from this is that most IEP teams are powerless. You have to go over their head.
I'm in Minnesota, USA. I've gotten in touch with an MDA rep who has IEP advocacy connections, and she's going to see if they can help me. Wish us luck! :)
Me neither. Can't seem to get anyone to do his stretching as part of gym either. (Quebec, Canada).
Angie Evans said:
Where do you all live that some can get pool visits in an IEP. That is amazing. We live in Ontario, Canada and I have never heard of such a thing.
Yes, Simon takes Deflazacort. The medication used to be "free", but we had to pay a very small $7 "dispensing" fee to the hospital pharmacy. Then about 18 months ago or so they started charging us 17¢ per pill, plus the dispensing fee. But our private insurance still will not cover the cost or dispensing fee, and we still have to get it through the hospital system???
I know it's not much $, but I can't get a satisfactory answer why it changed.
I use it as a medical expense on the income tax anyway.
How about Deflaz in Ont?
My apologies to Melanie for hijacking the IEP discussion!
Your hijack was interesting. No apologies necessary. I enjoy learning how our DMD experiences differ based on where we live.