Just Like the Other KidsFriday, March 09, 2012
Summer camps for kids with diabetes provide an opportunity to feel normal and learn from others. Helping to oversee this vision, the Diabetes Education Camping Association (DECA) aligns individual camps together as a collective group to create a stronger, united voice within the camping community. As such, DECA’s new Executive Director, Terry Ackley, is looking to keep the traditions of such camps going strong, as well as sustain DECA by finding new growth opportunities.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
The sun is shining off the lake and the trees and foliage are a magnificent green. The air is clean and children are milling about waiting for an opportunity to get into a canoe or swim in a lake.The kids are laughing and excitedly waiting their turn. Most importantly, they are free of the worries of the world.
Many people have similar memories of camp growing up, and for kids with diabetes who attend summer camps, this can be a time for them to not only relax, but feel normal.
One of the things that sometimes gets forgotten by parents and providers is how having diabetes can make children feel different from their friends and peers. Whether it be checking blood sugar, taking an injection, or abstaining from certain foods, there is an adjustment phase for kids with diabetes to get used to--not only learning how to manage their diabetes, but to acclimate themselves to people around them, who are observing them as they take care of themselves.
Diabetes summer camps give kids a reprieve from feeling different, and this can be incredibly important for children who are finding their way in managing a chronic disease. (Here is a short YouTube video about the camps.)
As someone who has been active in summer camps for years, Terry Ackley, executive director, Diabetes Education & Camping Association (DECA), has a good understanding of the needs of the camps. Beginning with sending his daughter, Emily, many years ago to a camp in Alabama, Ackley’s involvement grew and evolved from being a volunteer at the camp to serving on its board of directors, to eventually ascending to his present DECA position in 2012.
Ackley (pictured, lower right) is going to be overseeing an organization that represents more than 125 diabetes camping programs and serves between 20,000 to 25,000 campers annually.
DiabetesCare.net sat down with Ackley to discuss the significant role these camps play, the ongoing needs of the camps, and his plans on finding growth opportunities.
DiabetesCare.net: Can you talk about your experience prior to becoming executive director of DECA?
Ackley: In 1988, my daughter first attended Camp Seale Harris in Alabama, a camp for children with diabetes. In 1990, my wife and I were invited to volunteer at the camp, and I believe we were invited primarily due to her accepting the role of coordinator of the children’s diabetes education classes. My first job at camp was to pick up groceries, run errands, and provide general manual labor where needed.
A couple of years later, I was recruited to serve on the Camp Seale Harris Board of Directors. In 1995, I was invited to serve as the Assistant Director of the organization. In 1997, I was promoted to the position of executive director.
The Camp Seale Harris Board of Directors recognized an opportunity to grow its services beyond the resident camp model. The board realized it would be beneficial to have a corporate name that was more reflective of the growing services of the organization. The name of the organization became Southeastern Diabetes Education Services (SDES). Southeastern Diabetes Education Services offers a wide range of programs for children and youth having diabetes and their families, from local community family education and support programs, to day camps, summer camps, and youth adventure programs.
Prior to leading Southeastern Diabetes Education Services, I spent 15 years directing education, employment, and residential programs for individuals with disabilities.
Diabetescare.net: How does it feel to ascend to this position?
Ackley: Diabetes camps are operated by incredible people.These folks have a genuine passion for helping children learn how to live well with diabetes, and in most cases they demonstrate a lifelong commitment to volunteering their time and talents to helping them. In the majority of cases, they take personal time away from their jobs and families so that children with diabetes will have the incredible experiences that diabetes camp offers. Their personal sacrifice of time doesn’t just take place when camp is going on. They work throughout the year to recruit children, families, and volunteers, and spend countless hours planning.
It is humbling to be associated with people who demonstrate selflessness, empathy, and compassion every day of their lives. It truly is an honor to be provided the opportunity to serve diabetes camps and the remarkable people who operate them.
DiabetesCare.net: For those who have never been to a camp, why are they important?
Ackley: Children with diabetes never get a day off. They spend every waking moment wondering if their blood sugar is going to be low or high, if they have enough carbohydrates on board, or if their blood sugar is going to drop if they play baseball or dance.
They struggle with staying motivated, and they face a constant challenge with the effects of emotions and their impact on blood glucose levels. They also have a lot to remember, so they sometimes forget some of the important details of appropriate diabetes care.
Most of the time, children with diabetes do not have the opportunity to just be kids.
Diabetes camps encourage, educate, motivate and give hope to children struggling with this difficult health condition. Children go to camp and see that they are not the only person living with diabetes. They see other children, young adults, and successful professionals who also have diabetes. Often they are introduced to people with diabetes who have achieved much success. For example, last year the children at Camp Seale Harris were introduced to Sean Busby, a professional snowboarder, and Kris Freeman, an Olympic cross country skier, both of whom are elite athletes who compete at the highest level and have diabetes.
It is imperative that children with diabetes are motivated to stay on top of their diabetes. It is vital that they have the knowledge that they need to successfully manage their health. It is also very important that they understand that they are not alone. They have a camp family. Many members of this family also have diabetes. Everyone in the family understands their challenges and stands with them.
DiabetesCare.net: Can you talk about one or two successful DECA programs?
Ackley: The core program of the Diabetes Education and Camping Association is our training conference for diabetes camping professionals. The conference provides information about best practices for diabetes education and camping programs. Sessions often address topics such as program activities, diabetes education strategies, health care practices, and general administrative subjects. The conference also provides a wonderful networking opportunity for persons serving in the diabetes camping community.
We just had a conference this past October, and we are looking at March or April of 2013 for our next conference. The purpose is to bring together the people who operate the diabetes camps. We will bring in speakers who often have a link to diabetes or the camping community to motivate our participants and help them relate to the job that they are doing.
Our planning committee tries to recruit information from the member camps regarding the types of issues they are seeing, the challenges, and the information they may need to have presented. This allows them to take the information they learn back to their camps.
Part of the conference is to give them more precise training, such as how to achieve better blood glucose levels for their kids at camp. We network and share information, such as protocols for night rounds or dealing with high and low blood sugars.
If there are new camp leaders, we discuss how to work with your organization and raise funding. It is an opportunity to share ideas, have dialogue, and also a venue to bring our participants current knowledge.
Additionally, the Diabetes Education and Camping Association recognizes the opportunity to involve young adults with diabetes in diabetes education and camping initiatives. As such, we created a DLead Committee to address this, and recruited young adults, ages 18 to 30 years to serve on the committee. This committee was instructed to identify an unmet need of persons with diabetes.
Their initial observation was that college and young career age persons with diabetes did not have access to programs designed for their age range, with information that would be relevant to their lifestyles and challenges. The DLead committee created DTREAT to address these needs. The committee plans and operates the programs, which are generally held on college campuses. At the DTREAT conferences, the DLeaders, and others knowledgably of the interest and needs of young adults, provide the attendees information about living well with diabetes, access to a community of others their age who also live with diabetes, and general emotional support. DTREAT’s have been held at several locations across the United States, and our first DTREAT Canada was held this past year.
DiabetesCare.net: What are challenges that lie ahead?
Ackley: Diabetes camps have a tremendous opportunity to positively impact the lives of children with diabetes, but they face many challenges along the way. One challenge that I observe is a change in lifestyle among children, their families, and also potential camp volunteers. Their lives are extremely busy with many competing activities. They find it difficult to “fit” diabetes camp into their schedules.
Also, the slow economy has had an adverse impact on financial support of most charities, including diabetes camps. It is very common that diabetes camps provide financial aid to campers demonstrating financial need, and only a fraction of the actual cost to operate camping programs comes from program fees. Diabetes camps rely heavily on charitable giving for most of their financial support.
In regard to charitable giving, a little publicized fact is that the type 1 diabetes product industry is a dear friend of diabetes camps and the children whom they serve. In my opinion, diabetes camps would not survive without their contributions. Many of the type 1 diabetes product companies provide donations of products, including insulin, blood glucose & ketone meters & test strips, syringes, and pump supplies. The diabetes education and camping community is very appreciative of their wonderful support!
DiabetesCare.net: What do you hope to achieve during your tenure?
Ackley: We have had a North American influence primarily. We know there are camps scattered around the world and we have had a few camps from different countries over the years, but we haven’t had the resources to get ourselves out there to identify other camps and expand relationships with them. We would like to offer the same services to these camps on an international level.
Presently, we have to be able to build the financial capacity that enables us to be able to follow through on a consistent basis, in order for diabetes camps to continue to exist. It is my vision and hope that the service and support that the Diabetes Education and Camping Association offers will be available to all camps worldwide, and that our business model will be sustainable.
To learn more about DECA or to donate to the organization, interested parties can go to their website here, or call (256) 757-8114.