Yes, even kids know when something isn't fair. And Ceasar Sanchez made the judgment call pretty quickly last July, when the Boys and Girls Club of the Pikes Peak Region booted him from its summer camp program.
The reason? Ceasar has to carry an EpiPen, a simple life-saving device that's used when people with severe allergies go into anaphylactic shock.
"Me and my mom can't understand [the rejection], because what's the point of kicking a kid out of the Boys and Girls Club that pretty much accepts everyone?" Ceasar asks.
The local Boys and Girls Club, which serves about 3,500 kids at 16 sites, had its reasons. Staff told Ceasar's mother, Renee Gonzalez, that the program does not accept children who need to carry medication. The program lacks trained medical personnel, and administrators don't feel comfortable assuming liability for a child who could need medication administered. Staff also felt uncomfortable allowing Ceasar to carry the shot on his person and administer the medication himself if need be.
Gonzalez says staff added that a child had once stolen an EpiPen from a peer, then used it to stab a third child. To Gonzalez, that sounded like a failure of supervision. Either way, Ceasar was welcome in the program, but his EpiPen was not.
That was a de facto rejection for Ceasar. While he hasn't needed an EpiPen injection since he was a toddler, his allergies to nuts and seafood mean he's always at risk for a severe reaction.
Ceasar, who'd already spent three weeks at the summer camp, was crestfallen when he heard he couldn't go back.
"I really didn't like it, because I had so much fun there that I wanted to go back and have more fun," says Ceasar. At one point in the interview, his eyes well with tears.
To Gonzalez, the rejection was more than hurtful — it was discrimination. Ceasar's allergies are severe enough to qualify as a disability. And that means he should be protected by the Americans with Disabilities Act.
Not the right offer
The ADA grants certain rights and accommodations to people with disabilities like Ceasar's. In particular, Title III of the law indicates that many public, commercial and private entities must provide accommodations. Private clubs don't always have to comply, but since the local chapter of the Boys and Girls Club works closely with public schools, and is considered a "public charity" that gets substantial support from the government and the public, it appears that the law should apply.
Gonzalez filed a complaint with the U.S. Department of Justice. In mid-September, she received a DOJ offer to pay for a professional mediator through the Key Bridge Foundation, rather than launch immediately into a time-consuming investigation. Gonzalez agreed.
During the mediation late last year, Gonzalez received a letter from James Sullivan, president/CEO of the local Boys and Girls Club, one of the oldest chapters in the country. (Sullivan did not return the Independent's phone calls.) Sullivan explained in the letter that while the club's summer camp program does not accept children who need medication, its child care program does.
Sullivan offered to accept Ceasar into the latter program, both after school and the following summer, at a 50 percent discount. For the after-school program, though, Gonzalez would have to leave work to pick up Ceasar from school and drive him there.
The offer was unconditional, meaning that Gonzalez would not have needed to withdraw her complaint to accept it.
"As a result of the mediation, I better appreciate your personal situation and the situation of your son, Ceasar," Sullivan wrote. "I also hope that you have a greater understanding of the significant differences between the accredited Child Care program and the Summer Camp program."
Gonzalez didn't take the offer. She couldn't afford the program, even with the discount, and she couldn't get enough time off work to transport Ceasar. The club has refused to change its offer.
Continuing the fight
Gonzalez says Sullivan told her that allowing an EpiPen would cause an "undue financial hardship" and "fundamentally alter" the program — thus making it immune to ADA requirements. But Gonzalez isn't buying it. She says that explanation doesn't square with her research.
"Certain companies have had to make drastic changes," she notes. "They still weren't covered under an 'undue financial burden.'"
In a TV news story last summer, Sullivan also said that his policy on medications like the EpiPen was no different from that of local school districts. But public school districts do, actually, have to accept children with disabilities. And Ceasar notes that at District 11's West Elementary, he carries his EpiPen in his waist pack.
The Independent also contacted the Boys and Girls Clubs of Metro Denver, which runs seven clubs, seven school-based programs, two intervention programs and a camp. Chief Operating Officer Kathy Luna says the chapter allows kids with EpiPens. The children are expected to self-administer the medication if needed; staff are expected to dial 911.
Given the standstill, Key Bridge at the time of this writing was prepared to declare Gonzalez's mediation a failure, and send the complaint back to the ADA for investigation. Gonzalez says she won't drop the fight; she wants the policy changed. And not just for Ceasar, who still longs to go back to the club and join his friends, but for other kids with disabilities.
Local kids with disabilities need all the advocates they can get. Exclusion is not uncommon for them.
Take Veren Betzen, a local 17-year-old who uses a wheelchair. Veren has been in our paper before ("We can't work it out," News, March 24, 2011), when his service dog was banned from his school. But that's hardly the only incident. His mother had trouble finding a day care that would accept Veren when he was younger. The boy's been cast to the sidelines in physical education class, and told he couldn't volunteer with a local nonprofit. That last one was especially devastating.
"Being told I wasn't allowed for that place made me just get so wrapped up in the bad stuff that kept happening, and I wanted to give up and hide in the house so I didn't have to deal with it," Veren says.
Gonzalez has not been given a timeline for when her complaint will be resolved. In the meantime, she's enrolled Ceasar — who's spent a lot of time at home "doing nothing" — in a program at West Community Center that he'll start after winter break. Administrators there will allow Ceasar to carry his EpiPen.