Zajac Ranch for Children is well-known in the Lower Mainland and beyond as a getaway for young people with medical conditions who otherwise wouldn’t be able to attend camp.
So when Sandra Di Curzio’s daughter Chiara, who has Down syndrome and autism, was told she could not attend this past summer because Chiara is a so-called “eloper” – defined as someone who wanders away – Di Curzio was shocked.
The camp said she would need a personal support worker or her father to be with her 24 hours a day because they cannot accommodate elopers.
“I find that hard to believe,” Di Curzio said. “This is a camp for kids with disabilities. There are kids with cerebral palsy, non-verbal, kids on feeding tubes, and nobody has ever needed 24-hour care?”
A spokesperson for the Zajac Ranch said they tried to work with Chiara’s family but it was too late for this past summer. But for Di Curzio, the situation points to the larger issue of children with disabilities being excluded from society in so many ways.
“This has been very distressing for me as a parent,” Di Curzio said. “Other parents can sympathize, but most don’t care unless it’s their own child being excluded. I scroll my Facebook and see pictures of kids going to camp or at camp and feel sad all over again.”
Di Curzio applied for Chiara to attend a mixed diagnoses camp this summer at the Zajac Ranch. Chiara is 12 years old and has trisomy 21 and autism. On her application form she said she stated on four occasions that Chiara runs and is an eloper. She said she was asked on the application if her daughter needed one-on-one care and she told them “yes.”
She said Chiara was accepted at first as long as personal support worker was paid for during the day. But when Di Curzio told the camp the worker would go home at the end of the day, the camp said “no.”
They said they wouldn’t accommodate an eloper, and they wouldn’t let the family take Chiara home at night because it’s not a day camp. There was a suggestion that her father Dermott could stay overnight, but he has medical issues of his own.
The Progress spoke to Carman Zajac at the camp who said they do not have any way of dealing with campers that walk away at night.
“She was never denied camp, but we needed to ensure her daughter was safe,” Zajac said. “In fact her husband was concerned about the safety of her daughter because she was an eloper at night.”
Zajac the camp just didn’t have the capacity to manage the situation as it was presented by Chiara’s family.
“‘I’m not saying no,’” Zajac said she told Di Curzio. “‘But it won’t be this year unless you can find someone that can stay up at night. Let’s talk about a solution for next year.’”
Di Curzio said she feels sad and rejected.
“It was profoundly ridiculous and the bottom line is that my daughter missed camp and didn’t have to had there been a willingness to work with our family and caregiver.”
Zajac said Di Curzio is “a very passionate mother that just want to make sure her kid was included, and I get that.”
Many parents of children with Down syndrome face challenges and are used to being excluded. Di Curzio said she has been involved in constant advocacy from the day her daughter was born. Just this week she was on a call with Down Syndrome BC and other mothers sharing familiar stories, including the challenges they all face creating independent education plans (IEPs) for their children with school officials.
“Camp Zajac is the tip of the iceberg,” Di Curzio said. “People take advantage of the fact that parents are tired and don’t have the energy and often the money and education to fight people on the status quo. These instances – Camp Zajac and the IEP meeting last week – show me just how much heat needs to be placed on these people for denying people with special needs the right to life, human dignity and resources and services; they are far from equals in our society.”
It’s exhausting and frustrating for many on the front lines of fighting for the rights of people with Down syndrome.
“I’m tired and I’m sad,” she said. “We are always rejected.”
Di Curzio said she filed a B.C. human rights complaint on Aug. 11 but was told it will take six to eight months for adjudication.
Zajac said this is the first time Zajac Ranch has faced a situation like this.
“This is something we are going to have to consider moving forward because it’s not like we want to exclude anybody. We try to get everybody to camp.”
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