trach LO-accessible nursery/daycare in Toronto???

[maleeksmom]

hi there

My son Maleek has a trach and also a severe bilateral hearing loss. Obviously (at least to me :) he needs to be in a sign language nursery program in order to acquire basic language and communication skills. His needs are more acute because he was born and lived in Japan until the age of 2.5 where services for ASL were non-existent. I have been told that he will be provided with a nurse for kindergarten when he turns four but that is not for another year. He just turned three in June. It seems that there is no way for a LO with a trach to attend nursery school/daycare in Toronto!!!! I have not been able to find a nursery program with the appropriate medical staff---and a nurse will not be provided for him to attend a nursery program for kids with hearing loss. This seems like big discrimination and a complete lack of accessibility for our kids in Toronto!! I know the city has a mandate to provide inclusive care but it looks to me like our kids are being completely left out!!???

Are there any Toronto/Ontario moms who have had the same problem or are currently trying to get their child into a nursery/daycare program? Also, any moms with children who have the combo of trach/hearing loss who are trying to find a program in Toronto? Am thinking we should be able to work together to push for services for our kids!! And parents from other places--have you been able to find nursery/daycare for your trach LOs?

Thanks in advance for your input/advice!!

[JessicaLalonde]

Try contacting your local MP and see if they can help. Also, has anyone been in contact with you about an Early Childhood Interventionist coming out? We have one that comes once every 2 weeks, it isnt much but can give you good tips about speech/sign language etc.. Its a free service, maybe someone at Sick Kids can point you in the right direction for that??

[Momoffive]

In Manitoba, the program is called "POT-C", provincial outreach therapies, children. OT, PT and SLP come out to your home (seemed like we had someone every week), although some people who have transportation and have other appointments sometimes prefer to go out of the home for these appointments - also, some home situations don't lend themselves to inhome services. Robin started daycare when he was 4 (we don't have Junior Kindergarten, the kids go at 5) and the homecare nurse schedule followed him there - will they not allow the nurses that come to the home to go to a nursery school or daycare program? I know, this isn't helpful to the immediate situation - I second Jessica's suggestion to contact your MLA and see what they can help you with.

[maleeksmom]

Hi there

Thanks so much for the great suggestions! So far---I have contacted my area MPP (Member of Provincial Parliament) and they said the only thing they can do is forward a letter to the appropriate ministers (Minister of Health and Minister of Child and Youth Services). Given my struggle earlier this year with the Ministry of Health I don't have much faith in that route. I would have to write the letter myself so not much advocacy available.

I have already contacted the CCAC which is the Ontario department that handles all the at-home and in-school nursing. They have a ridiculous rule that nurses cannot attend nursery or daycare programs. They can attend a junior or senior kindergarten once my son turns four but before that it looks like trach kids in Toronto (or probably Ontario) are excluded from nursery/daycare programs which for my son excludes him from language services. We have an ASl consultant etc who comes into our home several times a month but it won't at all replace the social, interactive, immersion aspects of an ASL nursery program.

I have met with the fundraising team at the school for the deaf where I have secured the nursery spot and they have suggested going to the media with these issues of accessibility. They can't fundraise for individual students and am doubtful private funding would be available for the amount of nursing hours needed. Any thoughts about the media idea? Not sure if I am up for it but it really shocks and infuriates me that our trach kids are being excluded from crucial developmental services!! Sorry to rant!!