Lena Zuckerwise was all set to send her 7-year-old autistic son to a summer day camp near their home in Massachusetts. Like a lot of working parents, she needs extra child care in the summer when her kids are not in school. The camp she selected would allow a therapist to go with her son, which was necessary because it didn’t have the staff to support him.

But she found out after she signed him up earlier this year that the family’s insurance company would not cover therapy in a camp setting. Zuckerwise would have to pay an additional $4,400 for her son’s aide support on top of the money she was already spending for two weeks of day camp.

Although a growing number of summer camps welcome kids with disabilities, many require parents to provide and to pay for the necessary supports that their children need to attend, a financial surcharge that can make camp prohibitively expensive. Even if camps provide support at a cost built into the fees, it’s not always adequate for all disabilities, including autism and related neurological disorders that can cause behavioral and communication challenges.

“My partner and I both work full-time and this created a logistical nightmare for us, not to mention financial and emotional,” said Zuckerwise, a university professor.

Instead of accepting the insurance company’s decision, the family pushed back. Zuckerwise contacted her state representative, a state senator she knows personally, and reporters at the Boston Globe. She appealed to her different social media networks, including a college alumnae parents’ group and a Facebook group for academic mothers, which has more than 16,000 members. She asked members to tweet at the insurer, Blue Cross Blue Shield of Massachusetts.

According to Amy McHugh, a spokeswoman at BCBS, the company had reversed its decision in December 2018 to cover therapy for autism in camp settings when it’s delivered by a licensed applied behavioral analyst, but hadn’t communicated that information properly to members or within the company.

“As a result of feedback from a member, we realized we had not effectively communicated this change to all appropriate areas within our company,” she added. “We are committed to ensuring that everyone within our organization has a clear understanding about coverage of ABA [Applied Behavioral Analysis] services in camp settings.”

The change goes into effect July 1.

“It’s a real victory for us and hundreds of families like ours in our state,” Zuckerwise said.

Summer camp season is an especially stressful one for parents of children with special needs. Many parents cite the emotional toll of finding a camp willing and able to accommodate their children. Others describe the constant vigilance required for their children with Celiac disease, for example, not to be exposed to craft projects with flour or Play-Doh, which contains gluten. Then there’s the anticipated wait for the phone call that the child may be acting out and needs to be picked up.

That’s one of the reasons I send my 7-year-old and 4-year-old to an autism day camp in Philadelphia for most of the summer. This is the fifth year I’ve had one or both kids at our beloved camp at the Kinney Center for Autism at St. Joseph’s University in Philadelphia, which provides us with financial assistance to make it work. (My sister and her family also allow us to move in with them for the summer so we can relocate from Chicago.) There’s a relief in knowing that I don’t have to explain to camp staff why my children are acting a particular way. The entire experience is built for them and about them. I know there is enough support. I know the staff is trained around autism. I drive away each morning confident that my sons will be happy and safe.

Kim Hart and her husband signed up their 15-year-old autistic son with Down syndrome for a camp in Tennessee that was highly recommended for children and young adults with special needs. Her son, who is also medically complex and nonverbal, is super intelligent, she said. “We were told by the camp that if he had behavior issues, we would have to come pick him up,” Hart said. “We knew he would have some behaviors, just in the transition process. And he gets very frustrated when people do not recognize his intelligence or take the time to wait for him to respond using his speech app on his iPad. So we knew they would be some bumps in the transition. We just didn’t know if it would be minimal.” At the last minute the family backed out. “The relief that we felt knowing that we would not get a phone call was so immediate and immense,” she said. “We instead have hired someone to come into the house for a few hours a week.”

Many such special needs camps are expensive, although more affordable camp options do exist. My 7-year-old has attended camps through the Chicago Park District, which assigns an inclusion aide for free. We’ve never been turned away or excluded from any park programming because of his disability, but the park does not allow our therapists to accompany him. My sons also attended camp at the Lincoln Park Zoo over spring break, which provides free inclusion support. (My 4-year-old does not require additional supports at camp but sharing his diagnosis means some camps would exclude him or make me pay for accommodations he doesn’t need). The boys will go again to zoo camp for a week in August, and I am able to afford it because of financial assistance the zoo generously offered.

Over spring break, I ended up having to stay at zoo camp for two days with my older son because he was too distressed to be left in an unfamiliar place for the first time, and I was afraid the staff, unfamiliar with him, would not be able to handle some of his behavioral challenges. A mom from California I spoke with is going to half-day camp with her autistic son this summer for similar reasons. “I’m trying to spin it like ‘I get to attend camp too!’ but the whole thing is frustrating,” she said.

Krisjon Olson battled with her 9-year-old daughter’s “inclusive” camp in Wisconsin for two years after it required her not only to pay extra fees but also to provide a one-on-one aide. Olson said her daughter, who has a developmental disability, had minimal needs. The family requested that she be taken to the bathroom every two hours instead of the three that the campers were given and needed a little extra help getting out of her bathing suit after swimming.

“We talked to them at length why they couldn’t accommodate,” Olson said. “It’s not actually inclusion if you exclude her based on her disability. They wouldn’t consider it unless we paid for an additional staff member and paid an additional amount.”

For the past two years, Olson sent a caregiver with her daughter. Last year, the girl’s caregiver was assigned to a different camp group and was only called to assist three times. For this, Olson paid hundreds of extra dollars in fees to the camp and covered the salary of the caregiver.

Olson said there are no other options in the suburban Milwaukee community where the family lives that her daughter with special needs can attend with her neurotypical sister.

“That’s the only option where her sister could also go,” Olson said. “And she would be devastated. Tons of kids from our community go to this camp. Even though we are philosophically in disagreement with their programming and their implementation and they make unreasonable demands on us, from her perspective she runs around camp all day and has a good time.”

In the end, even after the insurer agreed to cover the cost of the therapist, Zuckerwise didn’t end up sending her son to the camp. By the time the dispute was resolved, Zuckerwise had enrolled her son in another camp that didn’t require her to provide him with aide. It was too late to switch.

“The social skills he both learns and maintains in the relaxed, fun setting of camp are crucial for his continued progress during the school year,” she said. “It doesn’t really matter which camp he attends. It matters that he gets to go. He has the right to the same opportunities over the summer as his typically developing friends."

Jackie Spinner was a staff writer for The Washington Post for 14 years. She is now an associate professor of journalism at Columbia College Chicago and executive producer of “Don’t Forget Me,” a documentary on autism in Morocco.

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