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Tia's Parent

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You are the parent of a delightful and rambunctious 3 1/2 year old girl named Tia. Tia was born with Spina Bifida and then had a tracheostomy when she was 6 months old. Her doctor has recently said this will be permanent, but you haven't given up the hope of her regaining enough respiratory strength that it can be removed. Currently Tia has some health issues due to the tracheostomy. Occasionally she has to be resuscitated. Therefore, oxygen and a bagger and her suctioning equipment must always be close and school staff must be specially trained to be able to work with her.

Tia is very verbal. She scores right at her age for cognitive skills. She is so smart, in fact, that she frequently figures out ways to manipulate adults. She is very sensitive and kind to other children. It means a lot to her to have a friend to play or work with. She has two or three close friends from preschool. Her social skills are one of her greatest assets.

At school Tia walks with her crutches or uses her wheelchair, but at home Tia usually likes to relax without her braces on and just crawls or scoots around. During the week at home Tia needs to rest a lot so she can have the strength to attend school three mornings. Tia loves school and this arrangement with her in the private preschool has worked great.

After trying several doctors you have found one that will approve a speaking valve for Tia's trach. Some doctors felt her respiratory health was too weak yet. You really want Tia to be able to use this valve at school, but you don't care if she uses it at home or not. You've asked the preschool teacher to call a meeting of the team so you can tell them about the valve and to put an increase of speech services on her IEP so she'll get the help she needs to get ready for the valve and then to use it.

You just found out today that Medicare will buy two valves every six months. They are somewhat disposable so every one will have to be careful with them.

What are you going to ask the school district for? What are you going to ask the private preschool for? What do you hope will be the outcome of this meeting?

 
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