Camp independence in Ingleside teaches those with spina bifida

Forty years ago, people born with spina bifida had a 5 percent chance of survival. Today, medical advances have raised the survival rate to nearly 95 percent.

But with those advances come unanticipated problems.

Having been cared for by their parents, young people with the neurological disorder are moving into middle age. Their caregivers won't be around forever.

That leads to the question of how these folks can develop the skills they need to live independently.

Now, a summer camp devoted to meeting that need is being built.

Camp Independence is taking shape on the grounds of the YMCA Camp Duncan in Ingleside and is expected to draw campers from across the suburbs and beyond.

The one-of-a-kind year-round camp will serve children and young adults with neurological conditions such as spina bifida, spinal cord injuries and cerebral palsy, among others.

YMCA Camp Duncan Executive Director Kim Kiser expects a September ribbon cutting. Construction will begin on the main cabin in a matter of weeks.

"This is a truly unique camp," Kiser said. "Our goal is to equip these people with the life skills they need to live independently one day."

Teaching those life skills with an eye to independent living is the sole purpose of Camp Independence, Kiser said.

"Parents are the ones who have been caring for them their whole lives and the kids are used to it," said Kiser. "When they come to the camp, that cycle is broken and it's an intentional break."

Campers will go through in an intensive 10-day, bootcamp-like training session.

Depending on their age, campers will be taught how to keep a check book, basic cooking techniques and other skills for daily life. The camp will serve children as young as 7 years old to others in their 20s or 30s.

Most of those attending will be people with spina bifida, Kiser said.

Spina bifida is a birth defect where the spinal cord is at the skin's surface instead of being under the skin and within the bone.

There are around 1,500 people with the condition in the Chicago area, 500 of whom live in Lake County.

Dr. David G. McClone, 71, is considered an expert and pioneer in the treatment of spina bifida. The Chicago neurosurgeon has operated on at least 1,500 patients. He celebrates the advances in medicine, but became aware of the new problem about 10 years ago.

"These children are now graduating school and seem to be doing well. Eighty percent have graduated high school and 50 percent are going to college," he said.

"But what happens to those children when they are in their 20s or 30s? By middle age, 80 percent are still living with their parents and only 15 percent have full-time employment. Their parents are in their 60s and 70s and won't be able to care for them in the future," he explained.

McClone started a summer camp in Chicago a number of years ago to teach skills for independent living. The small-scale camp is now expanding into the permanent facility on the grounds of Camp Duncan.

The campers will be assigned a counselor who shadows them 24 hours a day. The counselor will be a mentor and teacher and is trained to encourage the camper to perform tasks by themselves, Kiser said.

"The counselors will ask, 'Oh, you have dirty clothes? Let's get those washed up. Here's the washing machine, here's how much soap to use. Would you like a snack? Here's the microwave. Let's figure out how to do that.'" Kiser said. "It will be the first time they will have done many of these things on their own."

The main cabin will have room enough for 16 campers and 16 counselors. The 32-room building also has customized bathrooms to meet the needs of people with neurological disorders.

The $1.5 million building includes a full kitchen and laundry facilities. The camp is funded by foundation grants and other fundraising events, Kiser said.

Long-term plans include the construction of two more cabins and a therapy pool. They hope to have room for as many as 50 campers and 50 counselors in the coming years.

Camp Duncan runs a number of specialized events each year. They offer a Burn Survivor Camp, Obesity Camp and a Tourette Syndrome camp, among others.

"There is a huge need for a camp like this," Kiser said. "We are all very excited to see it coming to a reality."