Trent Zazalak and his daughter, Tatyanna, smile at each other during a peaceful moment at home.
In September, Trent and Janelle Zazalak decided to upgrade the level of care their daughter, Tatyanna, receives while attending school in Brandon. Today, the nine-year-old Earl Oxford student still isn’t in class where her parents know she needs to be.
Tatyanna, who should have entered Grade 4 this school year, has late infantile batten disease — a rare, fatal autosomal recessive neurodegenerative disorder in which her body doesn’t properly clear out the buildup of toxins in her tissue.
The designation change — from a URIS-B to a URIS-A — means she would be aided by a trained medical professional during her time in class — she typically goes three times a week for three hours a day — rather than an educational assistant as in past years.
Students that require the aid of a trained medical professional to attend school "typically" have their application "reviewed in less than 10 working days from the time a completed application is received," according to Naline Rampersad, spokeswoman for Education Minister Nancy Allan.
"We didn’t anticipate there being any problems with getting her into school," Zazalak’s mother Janelle said last week. "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 still is no word."
The lengthy process has the Zazalak family questioning where the system broke down.
While Rampersad couldn’t speak to the particulars of the Zazalak case, citing privacy laws, she also chose not to answer questions about when the department received Tatyanna’s file.
Janelle isn’t sure if the delay has been at the Brandon School Division level or the provincial government level. What she does know is the bureaucracy is keeping her daughter from going to school, which "gives her that contact with kids and provides a degree of normalcy that is important to her."
For all URIS-A designations a health-care plan and budget must be submitted for the application to be approved, according to Rampersad. When the application is approved, funding for a nurse is released from the province to the school division.
Rampersad said cases are reviewed and responded to as soon as they come in as "Manitoba was the first province in Canada to have a comprehensive plan for children who have complex health-care needs. We have been leaders in providing an inter departmental partnership that has contribution from the three departments — Education, Health, Family Services and Labour — who have responsibility for children with complex health-care needs."
After learning of Tatyanna’s story last week, Susan McGregor, a former nurse, stepped up and offered both the family and the school division her services as a volunteer until something could be worked out. Unfortunately, according to McGregor, more "red tape" prevented it from becoming a reality.
"I was willing to volunteer until they were able to get everything in place, but that can’t happen because I have to be hired by the (Brandon) School Division," McGregor said. "I thought if I could help and volunteer that would get her back at school, but I also understand where the school division is coming from because they need to have someone hired for liability reasons."
Republished from the Brandon Sun print edition December 24, 2012