https://www.vnews.com/Parents-with-children-with-special-needs-struggle-to-find-camps-51086578
WHITE RIVER JUNCTION — The sea creature that Eli Hoen, 7, and Emma Woloshin were creating was slowly coming together.
Woloshin held out a fuzzy pipe cleaner for Eli to divide into tentacles with a pair of scissors. Then she helped him attach to a cork that would form the body of the octopus-like critter.
Occasionally, Eli would take a break from his work to give Woloshin a hug.
It was a Tuesday morning earlier this summer at Camp Aspire, a free, one-of-a-kind summer camp for children ages 6 to 16 with special needs run by the Special Needs Support Center (SNSC), a White River Junction-based nonprofit organization that assists families in the Upper Valley. The Special Needs Support Center is primarily funded by grants and donations.
Within a week of opening for registration in January, the 14 slots for each week of Camp Aspire filled up, said Woloshin, who leads Camp Aspire as part of her role as youth program services coordinator at SNSC. This year, it runs for one week in June and two weeks in August. During July, many Camp Aspire participants attend summer school programs in their home districts.
“It is a huge issue in the community and how fast our camp filled up is a testament to the need,” Woloshin said in a May phone interview. “I wish there was more we could do. We’re definitely trying, but the need is so big.”
Limited options
Each winter when summer camp registrations start to open, parents clamor to find spots for their children based on interests, availability and geography. For parents who have children with special needs, their options can be limited because it can be hard to find camps that can meet their needs.
“When you take that sort of issue which is already an issue for working families and narrow down the options to almost nothing, it feels impossible,” Eli’s mom, Annie Hoen, of Norwich, said in a phone interview in May.
Eli has cerebral palsy — a group of disorders that impact movement, balance and posture. He often uses a mobility device.
Hoen noted that it is a stark contrast from finding camp programs for her 11-year-old daughter.
“It’s sort of alarming how when you have a child who is disabled or has extra health care needs, how narrow the options are compared with what’s already really kind of a tricky situation, trying to find care for young school-aged kids,” she said.
She and her husband, Oliver, both work full time. In order to fill in the gaps, they use vacation days and try to cobble together a child care plan that works.
It has become more difficult since the COVID-19 pandemic, when support systems were altered and families now must rebuild them, Hoen said. Workforce challenges — including a shortage of personal care assistants and others who work with people with disabilities — have made it even more difficult.
Camp Aspire has been a lifeline in more ways than one. Hoen said the most critical piece is staff and volunteers are devoted to making sure campers get a traditional summer camp experience.
“They spend the day outside. They swim. They do all the camp things,” Hoen said. “They play sports. It’s really amazing. They go on field trips and have lots of fun.”
‘The right kind of support’
During that Tuesday morning in June, Melanie Adsit, executive director of the White River Junction-based nonprofit rePlay Arts, had stopped by to lead an art program. She showed campers examples of the creatures they could build, including butterflies and dragonflies. She encouraged them to use their imaginations.
“You can do whatever you want,” Adsit told them.
“We can do whatever we want?” a camper asked.
After Adsit affirmed that they could, the group broke into delighted chatter, discussing what they would create and what supplies they would use to do so.
The adults in the room — at Camp Aspire, there is one adult who has experience with children with special needs for every two children — took notice too: They helped their charges select materials from feathers to googly eyes to Washi tape to start their art projects.
SNSC’s staff is one of the reasons Camp Aspire appeals to parents.
“Knowing them and knowing what it is they need, what their behaviors are, how they communicate and what supports they need throughout the day is huge,” Hoen said. “The consistency of the staffing there has been amazing.”
That’s also one of the reasons Nicole Smits-Tempel, of Canaan, signed up her 10-year-old son, Vinnie Tempel, for Camp Aspire.
Vinnie is on the autism spectrum and he attends with his 8-year-old brother, Charlie Tempel, who does not have autism, and helps support his brother.
Staff at Camp Aspire have created a culture where children feel included, Smits-Tempel said. Vinnie comes home excited and confident each day, eager to share what he’s done.
“It’s just great to drop him off at a camp where we know he has the right kind of support and it’s a place where he will thrive,” Smits-Tempel said during a phone interview in the spring.
Vinnie also attends camp at other places where staff know him and he is comfortable, but not every camp is a good fit.
Smits-Tempel considered signing Vinnie up for a nature-based camp, but had concerns that staff might not be able to meet his needs.
“The unfamiliarity for me as a parent makes me not want to sign him up for that right now,” she said.
At Camp Aspire, “they know Vinnie so they know when he’s happy and engaged, and if he’s not happy and engaged he may do his own thing.”
The Special Needs Support Center, located in downtown White River Junction, is in a single large room. Windows at the front of the space allow natural light to trickle in. Art — many pieces created by those who attend programs at the organization — lines the walls.
Camp Aspire relies on the sensory tent at the support center where children can take a pause from activities, which they’re welcome to rejoin at any time.
A standard routine — and knowing what’s coming next — is often important for children on the autism spectrum. Staff at SNSC fielded questions from campers about the course of the day, what would happen when and why.
“It’s been really fun to see the kids grow,” said Woloshin, who joined SNSC in March 2020 and has developed bonds with participants, including Eli, over the years.
They are able to give children one-on-one attention that might not be possible at programs where there are fewer adults per child.
“Another broad hope is that whether it’s us or other organizations, we can help find a way to make camps more inclusive, whether that’s trainings or creating more awareness,” Woloshin said in May.
Insurance gap
The Health Care & Rehabilitation Services of Vermont, known as HCRS, runs a summer camp program for children who have mental health and behavioral needs and 30% of their campers also have an autism diagnosis.
There are two, three-week sessions for around 16 campers each summer through its Summer Therapeutic Program in Hartford, Springfield and Brattleboro. There is one staff member for two children.
“There’s definitely a lack of camps in the area and people who are trained properly to work with those children,” said Dr. Libby Keith, area manager in HCRS’ Children, Youth, & Family Division.
HCRS’ camp is free but only for children who are enrolled in Vermont’s Medicaid program; it cannot accept children who are on private insurance, said Heather Wilcoxon, assistant director of HCRS’ Children, Youth, & Family Division.
“Individuals that have private insurance, there are certain services that are not covered therefore we cannot offer them,” Keith said. “That is a barrier for sure.”
HCRS staff try to offer suggestions for other resources or camp programs that might be able to work for families who are ineligible, Wilcoxon said. They also have a summer enrichment fund that can provide financial assistance for families.
“I think it’s really supporting from multiple angles and sometimes its really sitting with them and providing that validation and empathy for how challenging it is,” Wilcoxon said.
Efforting inclusion
Traditional summer camp programs do what they can to meet the needs of families, often on a case-by-case basis.
Kristine Flythe, a recreation coordinator at the Lebanon Recreation, Arts and Parks Department where she oversees the summer camp program, said that the camper sign-up form they use asks parents to list any additional supports their child might need.
Over the years, they’ve been able to work with children with developmental delays: For example, a child who is in the 9 to 12 age range but is developmentally around 7 to 8 might be paired with a younger age group.
“We’ll adjust and we might have that camper work with the 7-8 kids so they feel more included, and it’s about where their skill level might be,” Flythe said during a phone interview this month.
Lebanon’s summer camp program uses Lebanon School District facilities, which are compliant with the Americans With Disabilities Act and can accommodate children who use mobility devices.
Some children attend camp with a one-on-one aide; sometimes provided by a school district as part of a child’s individualized education program (IEP) or paid for by parents.
“I don’t have enough staffing that have the skills to be a one-on-one aide,” Flythe said, adding that the majority of the camp’s employees this year are ages 14 to 16.
If the department was to employ one-on-one aides as part of its program, it would be cost prohibitive — not to mention hard to find people qualified to fill those roles.
“If we were going to go in that direction and found there was higher need, I think the same challenge we would run into is staffing,” Flythe said.
Ideally, parents said, there would be more programs like Camp Aspire and more funding to pay for one-on-one aides at traditional camp programs. There would also be more programs that work for children with mobility devices and transportation to help campers get where they need to go.
“I would just wish that there were enough camp opportunities that every child who wants to go to camp or every family that has a need for camp in the summer could be included,” Hoen said.