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Home My WebLink AboutParents aim to force school to accommodate painful skin condition - Globe & Mail - 01/15/2018 - Globe & Mail - 01/15/20181/16/2018 Parents aim to force Pickering, Ont., school to accommodate skin condition - The Globe and Mail m4m '1'0IRON ro Parents aim to force school to accommodate painful skin condition Pickering couple to ask Human Rights Tribunal to require Durham district to expand air conditioning I-leidi Grab, adjusts a bandage on her daughter, Iwals, h, as her brulher Maxwell, 6, looks on al Their Pickering, Oft, home on Doc..:1-'The children have a rare genetic skin condihion'I'hah re Nulls in huge blisters and open wounds. PHOTOS BY MICHELLE SIU/TI-Ilii'. GLt)C:1E ikND MAN.. MEREDITH MACLEOD PUBLISHED .JANUAIRY 15, 2.0:1.8 UPDAf ED 7.6 HOURS AGO A Pickering family is heading to the Ontario Human Rights Tribunal next month in a bid to force the Durham District School Board to install air conditioning to protect their "butterfly children" who suffered painful sores from sweltering classrooms last fall. Maxwell, 6, and Malia, 4, have a rare genetic skin condition called epidermolysis bullosa (EB) that results in huge blisters and open wounds, primarily on their feet, hands, knees, elbows and shins. Heat and humidity make for more friction, which tears away at their fragile skin. Last September's extreme heat was horrible for them at school, worsening their conditions and requiring daily salt bathes to ward off infection. https://www.thegIobeandmai1.com/news/toronto/parents-aim-to-force-pickering-school-to-accommodate-skincondition/article37616448/ 1/6 1/16/2018 Parents aim to force Pickering, Ont., school to accommodate skin condition - The Globe and Mail srOfzv CON FIN l.)l:::a I::Li:::i...ouv F4i::avi::::raFIS i:::tvu:::lvr Christopher LeBlanc prepares his daughter IHalia for bed Iirri e at their home in Pickering.'I he. family have launched a human rirghIs corrrplaiot against IIie school board because of ifs refusal to install an air conditioner which would help his two young children deal with their painful rgenefic skin condition known as'buttefly disease'. September's heat wave convinced their parents Heidi Graf and Christopher LeBlanc to launch a human -rights complaint after repeatedly being denied accommodation requests by the board over the past three years. Their requests were backed by letters from pediatricians and specialists saying air conditioning is necessary to prevent the sweating and friction that aggravates the youngsters' condition. The children's French immersion school — Sir John A. Macdonald in Pickering— has air conditioning only in the office and library. "I think what is most aggravating is that they don't need to install air conditioning at our school," said Mr. LeBlanc, who has EB himself. "lt's already there, it just needs to be extended to the classes." Adding insult to injury, the couple says, is that the Durham board recently announced a $17.6 -million plan to expand full air conditioning to seven schools and partial air conditioning to another 22 schools over three years. The family's school is not included. https://www.thegIobeandmai1.com/news/toronto/parents-aim-to-force-pickering-school-to-accommodate-skincondition/article37616448/ 2/6 1/16/2018 Parents aim to force Pickering, Ont., school to accommodate skin condition - The Globe and Mail Malta Graf', left, and her brof'he', Maxwell, Iiave.. bandages arid woo ids an f'hel lIegs caused by'hllfferfly disease. f hens is no cure for epidermolysis bullosa (l: 13) and no effec five f'reM rrunit for f'he condlfion known fn cmjse extreme ]ailn, The school board has been installing air conditioning at its schools since 2007, associate director David Visser says. Schools in this final phase were chosen for full or partial air conditioning based on geography, infrastructure and proximity to other schools with air conditioning, he said. "We are trying to endeavour to make the best decisions possible for the majority of our 70,000 students. The range of medical exceptionalities seems to be on the rise and so the dispersion of air conditioned schools is so important for us." S FORY CON FINI.JIiii!S I3f::10VV AI)Vf:::!RFIfSf::.IV1ENF SHIFT INTO THE SEASON WITH NO CHARGE AVVD. It's expensive to add air conditioning to existing schools, Mr. Visser says. The installation for this round is being paid for through the sale of a surplus school site and the increased energy use will add $564,000 to yearly operating costs. Mr. Visser declined to comment on the Graf -LeBlanc family's human -rights complaint, but said their school is heated by hot water boilers and has limited ventilation. He said it would cost double that of extending air conditioning in a neighbouring school with existing ventilation. https://www.thegIobeandmai1.com/news/toronto/parents-aim-to-force-pickering-school-to-accommodate-skincondition/article37616448/ 3/6 1/16/2018 Parents aim to force Pickering, Ont., school to accommodate skin condition - The Globe and Mail the children 17 kilometres away to an Ajax school. The couple objects, saying their children are only starting school and should have their special needs accommodated at their home school. Plus, they love it there, Ms. Graf says, and teachers and staff are terrific at treating the kids' condition, becoming experts at handling new wounds and changing bandages. C:hrislopher LeBlanc reads to his son, Maxwell. IHr. LeBlanc: shares the same skin condition his son and daughter have. The couple doesn't understand why their children's disability isn't being accommodated like others'. "If our kids needed a ramp for a wheelchair, it would be there. They wouldn't get sent to another school," Mr. LeBlanc said. "The amount the board would spend on transporting our kids to another school and fighting this with lawyers could be used to air condition the school." a � r P2 V CON IV r YJ U I:::! S Iiilliii. L.. OW Ft I::1 V 1:::! Ft HIS liii. IM liii. N r Unlike many special needs accommodations, Ms. Graf and Mr. LeBlanc say they aren't asking for anything that won't benefit everyone in their children's school. "It's not just our children who need this," Ms. Graf said. "All children need it. Our children have an exceptional need for it." A law firm that specializes in disability cases has taken their case. Ontario's Human Rights Code protects people with disabilities from discrimination when they receive services. A hearing is set for February. https://www.thegIobeandmai1.com/news/toronto/parents-aim-to-force-pickering-school-to-accommodate-skincondition/article37616448/ 4/6 1/16/2018 Parents aim to force Pickering, Ont., school to accommodate skin condition - The Globe and Mail 'H our kids ncede.d a ram1a for a whedr.hair, if would be there. 'f"hey wouldn`t got se pit to another adiool,' Mr. 1."enlanc said. ' I I i c amounh the board would spend on transporting our Kids to ano111er school and fighting this with lawyers could be used ho air condition tho school.' Heating and air-conditioning company Reliance offered to work on a solution for the children's school after reading about the situation in a local newspaper. A Reliance commercial sales manager met with board staff several months ago but nothing came of it, Reliance spokesperson Mike Kolatschek said. "We just wanted to help if we could.... We were a little surprised they weren't more open to finding a solution," he said of the board. Portable units, such as what were offered by Reliance, don't conform with the building code regulations for schools, Mr. Visser said. Two of eight school boards contacted by The Globe and Mail reported that they have installed air conditioning in individual classrooms or offices to accommodate a medical issue. FOLLOW US ON 1W1111ii!R @GI1.01BIE:T01RON O RIPOR I AN ERROR EDI10RIAL C01)E 0F: CO 1)1JC ' ^ LICI::NSING 01:111014S As of December 20, 2017, we have temporarily removed commenting from our articles. We hope to have this resolved by the end of January 2018. Thank you for your patience. If you are looking to give feedback on our new site, please send it along to feedback@globeandmail.com. If you want to write a letter to the editor, please forward to letters@globeandmail.com. 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