The Brandon School Division and the provincial government seem to be dragging their heels in the case of nine-year-old Tatyanna Zazalak.
For three years, Tatyanna, who has late infantile batten disease — a rare, fatal autosomal recessive neurodegenerative disorder — had been attending school at Earl Oxford.
However, as the Sun reported earlier this week, Tatyanna’s parents, Trent and Janelle Zazalak, decided to upgrade the level of care their daughter receives at school. But the process to change her care designation from a URIS-B to a URIS-A — which means that she would be aided by a trained medical professional during her time in class — has been far too cumbersome, and has meant that she has not been able to attend a single day of her Grade 4 classes at all this year.
Students who require the aid of a trained medical professional in school are supposed to have their application reviewed in less than 10 working days from the time a completed application is received, according to a government spokesperson for Education Minister Nancy Allan.
The family says they had only been notified that the necessary supports for her to attend classes weren’t available the very first day of school.
“We didn’t anticipate there being any problems with getting her into school,” Janelle said. “We’re stuck waiting, which isn’t equal access for everyone. We were led to believe end of September, start of October, and now it’s December and there’s still no word.”
Four months is a long time to wait, especially for parents who are attempting to care for a disabled daughter, not to mention the rest of their family.
For all URIS-A designations, families need to submit a health-care plan and budget for approval. When the application is approved, funding for a nurse is released from the province to the school division.
Certainly there may be reasons for some delay — a change in needed paperwork, for instance. But to leave a child hanging like this is unconscionable.
The family is unsure where the holdup is at this point — at the provincial level or with the school division. But the child, no matter her condition, should be able to have some schooling among her peers. Not only does contact with other students do Tatyanna some good, we believe it provides students in her school an incomparable lesson in compassion — something no ordinary classroom setting can offer.
The division and the province should settle this situation swiftly in the new year. There really is no excuse for further delays.
Republished from the Brandon Sun print edition December 26, 2012