How Special Needs Camping Has Impacted the Camp Experience

Vance Gilmore
January 2016
Camp Challenge

"Camping is an activity that has been embraced by humanity because it's fun and it brings people, especially families, together," said Dr. Tom Zellers, a professor of pediatric cardiology at UT Southwestern Medical Center and camp doctor. "For children with chronic illnesses, camp has often been forbidden because of the risks and physical challenges it presents. At [special needs] camps, however, children with medical problems, who are sheltered by their family and may be the only child with their type of medical problem in their family, neighborhood, or community, are brought together. In a safe and supportive environment, they meet and make friends with others with similar problems. They have the opportunity to challenge themselves personally and as a team, experience the fun and togetherness that other non-chronically ill campers know, and build self-confidence through a sense of achievement."

For over 115 years, the organized camp experience has been serving individuals with special needs. In 1899, a Chicago teacher, Mrs. Emma Haskell, took her students with physical challenges on a two-week camp outing. The next year Mrs. Haskell took a larger group of students to a Michigan site for two months. In 1901, Mrs. Haskell established a permanent site in Wisconsin for campers with physical challenges (Eells, 1986). This was the beginning of a pattern of the camp community's response to societal issues affecting campers with a wide variety of diagnoses, including polio, intellectual and physical disabilities, childhood diabetes, cancer, and HIV/AIDS.

A pattern of individuals who have responded over the years then emerged. It usually was caring medical personnel, parents of children with special needs, or dedicated professionals, such as social workers, child life specialists, or teachers. They saw that a need existed for individuals with disabilities or medical challenges, and they acted on it.

In the 1920s, Dr. Elliot Joslin and Dr. Henry John addressed the challenges of childhood diabetes (Eells, 1986). These doctors created separate camp programs and established a pattern of creating results in the treatment of their patients through organized camp experiences. Although these two programs produced very positive results, it was not until the early 1950s that camps for children with diabetes saw significant growth. Today many outstanding camp programs serve children with diabetes, such as Camp Sweeney in Texas, Camp Hodia in Idaho, and Camp Conrad Chinnock in California.

Between 1920 and 1947, the number of special needs campers grew from 200 to 3,200, according to the American Camp Association (Eells, 1986). A significant percentage of these campers had polio, but campers with intellectual disabilities, hearing loss, visual impairment, cardiac disease, asthma, and epilepsy were also included.

Muscular Dystrophy Camps

The trend continued when the national Muscular Dystrophy Association was urged by a group of parents to review the need for summer camp programs. In 1955, the first muscular dystrophy camp took place in Sussex, New Jersey. Today, 73 camp programs serving nearly 5,000 campers with muscular dystrophy occur across the United States (Muscular Dystrophy Association, 2015). In addition to the muscular dystrophy camps, several other pioneering camps serving individuals with special needs were developed in Texas, Indiana, New York, Illinois, Ohio, and California.

Camps for Children with Cancer

The first camp serving children with cancer was held at Camp R.O.C.K. (which stood for Reaching Out to Cancer Kids) in Florida, founded by a pediatric oncologist. In the late 1970s, dedicated doctors, alongside child life specialists, nurses, and social workers, founded several camps for campers who had cancer. Medical team members from all over the United States were realizing that the treatments for childhood leukemia were proving effective enough to be considered "lifesaving" treatments. More emphasis was placed on family support, socialization, and acceptance, and it was determined that organized camp experiences could meet those needs. At camp, the campers could learn about their diagnosis and how to manage it. They could interact with other campers dealing with the same diagnosis and, in some cases, the siblings of the patient could attend camp. The medical team who worked with the campers yearround often accompanied them to camp. The parents felt supported and were comfortable sending their child off to camp with the medical team they trusted. In the early days of camp for children with cancer it was common to rent a facility for a week after the facility's regular camp season was over.

In 1988, Paul Newman opened the Hole in the Wall Gang Camp in Connecticut for campers who had cancer and serious blood disorders. When Newman and his team studied the concept of cancer camps, he learned that nearly all of the camps rented space, and even those with a campsite of their own were not built for the medical needs of the population he wanted to serve. When the campers arrived at the Hole in the Wall Gang Camp, they found a kid-sized Old West setting filled with traditional summer camp programs along with fully accessible, high-quality medical facilities. The Hole in the Wall Gang organization (now called Serious Fun) has spread to seven additional states and six other countries. The mission of these camps has broadened to include a wide range of diagnoses.

Bereavement Camps

Two models of bereavement camps began in the 1980s. One model served children who had lost a sibling, parent, or individual they were close to, and another model served families who had lost a family member. Dealing with the issue of grief in a camp setting has proven to be highly successful. This camp experience offers grief education and emotional support. Campers are given the opportunity to address their feelings and honor their loved ones.

HIV/AIDS

Camps responded to a "new" societal issue for families that were being effected by the HIV/AIDS virus. In 1992, Camp John Marc in Texas held one of the first family camps serving families who had a child with HIV/ AIDS. Several other camps quickly followed suit. There were also summer camps during this timeframe serving campers with blood disorders who had been affected by the AIDS virus. Rather significant fear surrounded the issue of the transmission of HIV/AIDS in the 1990s. For camps to embrace campers and their families impacted by HIV/AIDS (and other illnesses and special needs) speaks to the inclusive spirit of the camp community.

"Attending camp provided our family a place where we could reconnect with each other without all the distractions in the world," said Melanie, whose son, Joseph, has special needs. "It gave us a place where we could strengthen our family and experience the beauty of God's creation.

"Being with families who understood the challenges of special needs children allowed us to feel more normal and not as isolated," she added.

Program Expansion Continues Despite Challenges

While the number of camp programs serving campers with special needs continues to grow as the camp industry responds to current societal issues, including HIV, sickle cell anemia, and autism spectrum disorders, expansion has had its challenges along the way. In 1993, camping for campers with special needs was dealt a setback when the Centers for Disease Control and the National Cystic Fibrosis Foundation ruled that children with cystic fibrosis could not attend camp anywhere in the United States because of a bacterial organism, B. cepacia, which could spread between children with cystic fibrosis and shorten their lifespan. Several camps had to end camping programs serving campers with cystic fibrosis.

Additionally, some national organizations like the American Cancer Society and the American Lung Association no longer financially support camp programs, yet many long-established camps continue to operate to serve these populations. Overall, the number of special needs campers has continued to increase even in light of these setbacks.

The Role of the American Camp Association

Camp has been innovative in developing accessible facilities for special needs populations. While some early camp facilities were meager, some camps were well-developed and are still in existence today. Part of the growth of special needs camps was the support of specific national organizations that were serving groups with asthma and cerebral palsy. In 1943, a committee for Specialized Camping Services was created by Wes Klusman, president of the American Camp Association (Eells, 1986). The first chairman of this committee was camp industry pioneer Eleanor Eells. This committee encouraged those developing programs for individuals with special needs not to have a philosophy of "overlimitation." The point was not to dwell on what campers with special needs cannot do, but stress what they can do, along with emphasizing independence. ACA adopted this philosophy, which was groundbreaking in the 1940s and is alive and well today, as evidenced by what one mother of a camper with spina bifida said of her son's camp experience: "[Robert] experienced summer camp in the same way as his siblings. He came home energized and proud of his camp achievements. For nine summers he built on those successful weeks at summer camp. We believe that this gave him the self-assurance to tell us at age 18 that he was going away to college, to a university 1,200 miles from home. And while there, he had the confidence to ask us for permission to study abroad in Africa, and we had the confidence to give our blessing," said mom Joanne. "Camp, to us, is about building competency, teaching persistence, and practicing independence. For a child with a disability, these traits can be key to an adulthood that is not limited by disability."

Partnership Model

Since the 1990s, the partnership model of special needs camping has picked up momentum. In the partnership model, camps partner with pediatric hospitals, agencies, or programs in their region. The camp facilities are built to be fully accessible to meet the needs of all campers. A good deal of planning goes into camp medical facilities and recreational areas to meet the needs of a wide range of diagnoses. In a special needs camp partnership, the camp organization provides the facility, leadership and program staff, and the camp program. The partnering hospital or agency provides the intake of the campers, the medical team (if it is a medical specialty camp), and the volunteers.

The partnership model has proven to be cost effective, innovative, and allows a large number of campers with a wide range of special needs to be served. It is common for these camps to serve campers with spina bifida, rheumatic diseases, liver disease, developmental disabilities, craniofacial disorders, and those who are burn survivors or organ transplant patients, to name a few. In the last 25 years, camps subscribing to this model have opened in a number of states, having a noticeable impact on the growth of organized camping.

The Value of Care

Another important aspect of camps serving children with special needs is the value it gives and the long-term impact it has on those who work at the camps as well as the campers. Staff members often learn more from the campers than they teach. They learn about empathy, perseverance, and spirit. Many of these staff members go on to pursue related fields, becoming teachers, physical therapists, doctors, social workers, therapeutic recreational specialists, and child life specialists.

Many camps across the country have done an excellent job of mainstreaming campers with special needs into their traditional camp program. When this can happen, it is another positive example of camps responding to a societal need. Special needs campers who attend camp have evidenced better family function, more social support, and lower anxiety. When campers live with each other at camp and recognize they are not the only individuals dealing with a specific diagnosis, or when they learn about their diagnosis and how to manage it, the outcomes are very positive. When parents attend family camps, they are given the opportunity to learn from other parents dealing with the same issues, and they feel the support that comes from a shared situation. Camp continues to respond to the changing societal needs of these populations with innovation and enthusiasm.

Today the Special Needs Kindred Group, which was founded in 1992, is active and strong. This group meets annually prior to the American Camp Association's national conference. The meetings are generally held at a nearby camp serving campers with special needs. Just as the 1943 Committee on Specialized Camping looked at overlimitation, the current Special Needs Kindred Group shares best practices in serving campers with special needs and furthers the cause set forth many years ago to serve campers with all types of special needs, which clearly has impacted all organized camping.

Photo courtesy of Easter Seals Camp Challenge, Sorrento, Florida.

References
Eells, E. (1986). Eleanor Eells' history of organized camping: The first 100 years. Martinsville, IN: American Camp Association.
Muscular Dystrophy Association (2015). Interview with Carolyn Minnerly, director of camp and support services Muscular Dystrophy Association.
Muscular Dystrophy Association (1955). Muscular Dystrophy Association newsletter, New York section.

For 38 years Vance Gilmore has worked at and directed camps for campers with special needs. For the past 27 years Vance has been the executive director of Camp John Marc in Dallas, Texas, which serves campers living with chronic medical and physical challenges.