Brainy Camps of Children's National
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Mission Statement
The mission of Brainy Camps Association (BCA) is to create supportive communities for children with chronic health conditions where the development of healthy and active lifestyles are encouraged, partnerships between patients and doctors are promoted, independence and self-management are fostered, education is offered and social connections are supported. Families receive much needed respite and direct medical observation of their children, with immediate intervention by healthcare experts when needed. Family camps allow parents and siblings to actively participate with campers while all learn to live well. The long-term goals of our camp interventions are to encourage healthy lifestyles and independence, and to foster resiliency, self-advocacy and positive well-being. It is essential for children with chronic health conditions to understand their disorders and know how to care for themselves at a young age in order to improve positive outcomes, promote resilience and further healthy living.
About This Cause
Brainy Camps Association (BCA) / Bear Camps of Children’s National, is a consortium of residential camps, family camps and retreats for children with chronic health conditions. The conditions served include high functioning autism spectrum disorders, Tourette syndrome, neurofibromatosis, epilepsy, sickle cell anemia, type 1 diabetes, heart disorders, Down syndrome and cerebral palsy. We also offer a series of cooking classes for families with children at risk for obesity, family camps for young children with type 1 diabetes, a transitions camp for young adults, online support groups, and leadership training. This year we are adding a residential camp for children with hydrocephalus and one for children who experience chronic headaches and migraines. During the fall and winter, we are training teens to serve as peer counselors, giving them the tools to provide support and reduce the social isolation experienced by children with chronic health conditions. In 2009, Brainy Camps Association (BCA) became a subsidiary of Children’s National Health System (CNHS) and was officially established as its own independent non-profit organization, partnering with organizations around the country that serve children with chronic health conditions and offering families much needed respite each summer. In 2012, realizing the opportunities available for training and hands-on experience, BCA was approved as an elective for the CNHS Pediatric Residency Program and medical students from George Washington University. Where we are today: Our program began over 23 years ago as a single residential camp serving a population of 23 children diagnosed with epilepsy, with 12 volunteers supervising their interactions. Today, we have a consortium of 14 residential camps, serving over 450 campers each summer with an interdisciplinary team of over 100 medical experts, professionals and students offering their time and knowledge to ensure camper safety and enjoyment. Our campers come from all over the US, Puerto Rico and Canada, with a smattering of campers from other countries in the world. What makes BCA unique? Healthcare in the United States is becoming much more community based. Hospitals are opening satellite offices and clinics in highly populated metropolitan areas, making it much more convenient for individuals and families to access care. Transitioning from hospital to community-based care is necessary if medical systems are to attract new patients and retain existing patients in this highly competitive market. BCA is ahead of the game in that we have been offering community-based care for years, making the transition from hospital to community care seamless and easy for our campers and their families. In a residential camp setting, chronically ill children are followed by a medical team who can see, first hand, how their patients respond to the treatment being delivered and, if treatment needs to be changed, it can be done immediately. In addition, since they are seen without their parents when at camp, young patients are given a unique opportunity to form their own personal relationships with their medical providers. They learn to become partners with their healthcare team, asking questions and offering ideas that otherwise might not be heard. Having their own voice is especially important for children diagnosed with chronic health conditions as they will be dealing with their personal health concerns throughout their lives and must know how to advocate for themselves. Services Provided: BCA works closely with medical experts in many healthcare specialties— including the divisions of cardiology, endocrinology, hematology/oncology, neurology, genetics and physical medicine--to provide a seamless flow of care and improved health management in children with chronic health conditions. Our programs include condition specific camps for children and families, educational training of campers and staff, and therapeutic support for all. Our research over the past ten years supports the benefit of BCA’s intervention model, with changes in our interventions reflect our study findings and new developments in the field. The primary goal of BCA camps and programs is to help youth with chronic health conditions live well and reach their potential. Our camp programs provide chronically ill children with an opportunity to meet peers, mentors and counselors with the same conditions and discover they are not alone in the world. Having experienced the loss of peers at much too young an age, they live with a keen awareness of their own vulnerability. The hurdles they face are many, including continuing medical care, over-protection by worried parents, stigmatization, social isolation, and fear due to the unpredictability of their conditions. In the safe environment of camp, where the condition is shared and respect is the norm, boundaries are lifted and children begin to develop a sense of personal strength and self-worth. For many families, attendance at our residential camps is the first time their children have the opportunity to be away from home for more than the length of a school day. Medical staff with expertise in the conditions served manage each camp, making parents feel safe to leave their children in our charge. Staff training and experience in caring for chronically ill children and our 2:1 camper-staff ratio further helps to allay parental concerns. For many, camp provides parents with their only opportunity to sleep through the night. Camp Program: BCA’s residential camps offer a large variety of activities for campers to enjoy, ranging from the traditional--swimming, boating, fishing and hiking--to the unusual--learning to fly on a trapeze, drive a go-cart, ride a horse and perform on a stage--, giving them the opportunity to test their limits and try things they never have before. Educational seminars, led by our medical teams, increase knowledge and self-management skills and give campers an understanding of their conditions and a much needed sense of control. Support groups allow campers to express their feelings, learn to effectively disclose and discuss condition and age-related matters, helping them to develop skills and solutions to problems in a manner that elevates their self-esteem and increases their safety. Through these various means, the campers begin to identify their personal strengths, resources, and goals to better manage their conditions, gain a sense of mastery, and contribute to the community. At BCA, campers are encouraged to express their feelings and practice ways to effectively disclose to peers, teachers and others. Youth learn about different accommodations available to strengthen their ability to achieve their goals. Children and teens realize their disorders do not have to limit them from developing hobbies and interests and reaching their personal objectives. Campers know they can rise as leaders in the camp community and are encouraged to identify their hopes, dreams and ambitions. Participation in BCA helps children understand their conditions, learn about their medications and the necessity of compliance, recognize triggers that exacerbate symptoms, identify the co-morbidities of depression, anxiety and learning difficulties, and develop self-management skills. BCA participants come to understand the many factors that impact their health in order to live well with their conditions. For example, understanding the impact of exercise on insulin and counting carbohydrates are critical for effective diabetes management; identifying triggers that increase seizures--such as heat and the lack of sleep--can help children gain control of their seizures; avoiding positions that cause pain and possible issues with pacemakers is essential for children with heart conditions; and recognizing the impact of sudden temperature changes on sickle cell disease reduces the potential for pain and strokes. Learning effective ways to manage one’s condition and overcome barriers in order to reach goals and live well are priorities for BCA. Educational question-and-answer sessions encourage campers to voice their concerns and learn more about their conditions. Support groups, both formal and informal, promote self-awareness, self-advocacy and a new found sense of safety and support. Medication management four times a day and round-the-clock medical staff supervision promotes medical safety. The range of activities offered challenges each camper’s physical and personal boundaries. Campers are encouraged to identify short and long-term goals, develop friendships and build support networks that go beyond the days of camp. While children and teens are supported in gaining skills, knowledge, friendships, and having fun, they are also respected and appreciated as teachers and experts in the world of chronic health disorders. Being seen as the experts, youth become empowered while educating college, nursing and medical students, as well as the many allied health professionals who assist at our camps. The development of the interchangeable role of student and educator directly impacts the relationships these children create with their healthcare providers; thus, the potential for increasing effective communication and medical co-management of the condition greatly improves.