For 51 weeks out of the year, Lindsay Cochran sometimes feels a little self-conscious.
The Gardner 14-year-old has a neuro-muscular disease called spinal muscular atrophy. She has never walked. Her affliction is one of dozens of neuromuscular diseases under the umbrella of the Muscular Dystrophy Association.
Despite having little motor muscle control and being confined to a wheelchair, Lindsay felt like a regular kid when she attended a free MDA summer camp at Tall Oaks in Linwood, Kan.
“It’s one week out of the year where I’m not known for being in a wheelchair, I’m not known for having a disability,” Lindsay said. “I’m known for me.”
MDA recently put that one-week respite in jeopardy for Lindsay and about 100 other area kids with various forms of muscular dystrophy.
The organization announced Feb. 1 it is merging its annual camps at Tall Oaks in Linwood, Kan., and its camp at Camp Windermere in Springfield, Mo. The new regional camp will now be held at Camp Barnabas at Teas Trail near Purdy, Mo., several hundred miles to the south near the Arkansas and Oklahoma borders.
It’s a decision causing sadness and confusion for families, campers and camp counselors on both sides of the state line.
“It’s kind of a mess, really,” said Alex Hinken, a 23-year-old camp counselor from Columbia. “They tried to sugarcoat it, but once you get down to it, they just canceled our camp out of nowhere.”
Officials with MDA say they’re looking for ways to improve the camping experience for its families across the country.
Nonetheless, Kansas City-area campers, counselors and families are now faced with extra fees, longer travel distances, uncertainty about long-term camper-counselor relationships and questions about the new venue’s Christian mission.
Martha Pierce, executive director of Tall Oaks, said MDA officials said the decision was based on “some sort of geographical formula.” Tall Oaks hosts various camps during the year.
“They said there was nothing wrong with Tall Oaks, they were sad to be leaving, but they were going to try this different format,” she said. “I did not realize that they had not told their staff or their families until the release (last week). They notified us in early January.”
Last year, the MDA camp at Tall Oaks brought 83 campers and 98 staff. Officials with Camp Barnabas, a special needs camp, are expecting about 120 MDA campers with the merge.
Monica Meriwether, MDA’s associate director of family support and clinical care, said the cost of having the camp at Camp Barnabas is “comparable” to having the camp at Tall Oaks.
“I don’t want to disclose numbers at this time,” she said. “To be honest, that’s pretty irrelevant. The fact that they still are within our parameters to run our camp program is a positive.”
Nevertheless, she called the camp at Tall Oaks a “phenomenal facility.”
“We had no problems or complaints there,” she said. “We just outgrew it. We were wanting to serve more kids across that territory, and Tall Oaks did not offer up that opportunity to do that.”
Meriwether said the move to Camp Barnabas was a recent decision based on an analysis of its overall services.
“At the end of every camp season, that is an opportunity to take a global look at all of our camp facilities — what was our programming like, and what can we do better,” she said. “This isn’t something that was in the works for a long time, but it is something that we decided to move forward with and we’re very excited about it.”
As for the distance, Meriwether said Camp Barnabas will be closer for some and farther for others, but many families drove long distances to attend camp at Tall Oaks.
“The families that were traveling were already doing that,” she said. “Camp Barnabas from the Kansas City territory is an average of three hours, and from Wichita it’s about the same, three to four hours. It really hasn’t changed for the majority.”
Counselor Hinken says he’ll go wherever his camper wants to go, but the distance is going to be a hardship on some families.
“A lot of our campers’ families are already struggling to get by as it is,” he said. “They don’t have the time to drive their camper all the way across the state and then come back and pick them up.”
This has been a period of transition for MDA. The longtime face of the MDA Labor Day telethon, entertainer Jerry Lewis, died in 2017. MDA appointed a new president and CEO, Lynn O’Connor Vos, in October. She previously served as the the global CEO of Greyhealth Group, a global communications agency.
Though campers can attend camp for free, a 2011 brochure listed MDA’s estimated cost per camper at $800. A recent photo on MDA’s Facebook page estimated the cost at $2,000 per camper.
Tax documents on MDA’s website show that from 2013 to 2016, the organization’s reported contributions and grants decreased from $144 million to $117 million. But Meriwether stopped short of citing financial reasons for the camp changes.
“Funding is definitely a priority,” Meriwether said. “We are in need of it. We always are, so we can continue the camp program that we want to provide. Our supporters are really, really important to us. We want to continue those relationships. The cost is not the reason for our changes. Camping enhancement is the reason for the changes.”
The change is part of a country-wide overhaul of MDA’s camp system. Whereas before, campers in the Kansas City-area were restricted to attending camps in the nearby geographic area, families are now allowed to attend any MDA camp in the country at any time of the year.
Muscular dystrophy families in Kansas are no strangers to these sorts of consolidations. The MDA camp in Wichita was merged with Kansas City’s at Tall Oaks a few years ago.
Kenzie Balthazor, a 21-year-old junior in psychology at Wichita State and a volunteer counselor, said that merger was a rough go at first. The Wichita camp lost support from local fire departments, which raised a lot of money for the Wichita campers. A few kids stopped going. The Wichita counselors had to adjust to how the Kansas City crew did things at Tall Oaks.
“We felt like our whole family fell apart,” she said. “Initially my reservation personally was, ‘I don’t want to drive that far. I’m going to get there and they’re not going to care about how I feel about camp, because it’s a different camp.’ Going into it, I felt like an outsider. But by the end of the week, I felt like it was a better place for our campers.”
But Balthazor says this merger is different. The Wichita-KC consolidation was a blend of MDA camps. Those who have attended the MDA camp at Tall Oaks call this an “outsourcing” to a third party in Camp Barnabas, which will have its own staff. Campers and counselors have previously attended for free. At Camp Barnabas, campers are still free, but each counselor is asked to pay a $250 registration fee.
“I’m a broke college student,” Balthazor said. “I can’t necessarily afford that.”
The system at Tall Oaks also allowed for a 1-to-1 ratio of counselors and campers, and many counselors have been with their campers for several years.
While Meriwether said keeping counselors and campers together “is the anticipation,” there are no guarantees. Balthazor has been a counselor for two other girls who have since graduated. She was to get a new camper this year. MDA campers also will be intermingled with campers with different physical and mental requirements.
“Even if I did apply to go to Barnabas, I would not be guaranteed to have my camper,” she said. “I wouldn’t even be guaranteed to be around the muscular dystrophy campers.”
She’s also worried that Camp Barnabas isn’t suited for the muscular dystrophy kids, a concern shared by other parents.
Walt Cochran said he took daughter Lindsay to Camp Barnabas a couple of years ago, where she felt as alone as she does every day. She had to explain to counselors there that she was physically unable to use a port-a-potty. She also was unable to join in overnight activities with the other kids because her breathing machine needed electricity and she needed a counselor to roll her every two hours because of the rods in her back.
Andrea Harp said hearing this assessment saddened her.
Harp is marketing director for Camp Barnabas, a Kansas City native and the mother of a special needs child herself. Her 2-year-old daughter has cerebral palsy and will use wheelchair when she gets older.
“We never ever want a camper to feel what that camper felt,” she said. “We are going to love these campers and love these volunteers they bring.”
Harp said Camp Barnabas will try to accommodate longstanding camper and counselor relationships, and scholarships are available for counselors who need financial assistance.
Camp Barnabas also makes no secret that it is a Christian ministry. They call their counselors “missionaries.”
“We welcome individuals from all religious backgrounds to serve and be served,” she said. “It is not a requirement to attend worship or participate in faith-based activities during the week. We believe we have to earn the right to talk about faith.”
Harp said Camp Barnabas would respect campers’ wishes completely when it came to religion. “We never want it to be a deterrent.”
Harp said Camp Barnabas is an accessible facility with a multitude of activities for people of all abilities. They have a rock wall with a zip line or a swing, which is accessible for campers who use wheelchairs. There’s a zero-entry pool and accessible paintball, miniature golf, archery and rifles.
“We might have campers who have limited mobility, so we will have the ability to shoot a rifle with the touch of a button,” Harp said. “And even that might be too much for some of our campers, so we’ve partnered with a local organization to offer a blink-and-shoot option for individuals who are completely immobile.”
MDA campers also will be intermingled with kids with other kinds of special needs. Harp said it would be close to a 50-50 split.
One of Walt Cochran’s concerns is that kids of all abilities will be lumped together.
“Although I love the idea of inclusion, Lindsay’s experience (two years ago at Barnabas) put her in a cabin with kids who could all walk,” he said. “She was not around kids with a neuromuscular disease and therefore felt alone, abandoned and constantly had to keep other children who did not understand that her wheelchair was an extension of her body from playing with and messing with her chair.”
Meanwhile, efforts are afoot to come up with a different solution for Kansas City-area kids.
Donors have raised more than $15,000 toward a $75,000 GoFundMe campaign to try to keep a camp for muscular dystrophy kids at Tall Oaks — if not this summer then next. Pierce said the Linwood facility is “open to it.”
Daniel Andersen, a 20-year-old political science major at Brigham Young University, is interested in exploring all options at this point. Anderson, a former Tall Oaks MDA camper with spinal muscular atrophy from Parkville, went to camp from age 8 and graduated out at 17.
“In someone’s life, there are a handful of moments that claim to be life-changing,” he said. “I’ve had more than my fair share, and this camp is among them.”
Lindsay says when she sees her friends at school running and participating in sports, it’s the thought of summer camp at Tall Oaks that gets her through.
“When you’re turning down on that road to get to camp, it makes all those weeks worth it, because you get this one week,” she said. “If that goes away, I don’t have anything to look forward to.”