“It’s not just a matter of the individual making the right choices. We need public policies that support physical activity programs for people with disabilities. We need more investment in programs both public and private. And we need private sports and fitness clubs to offer choices for people with disabilities.”

Stephen Corbin, D.D.S., M.P.H. – Senior Vice President, Constituent Services and Support – Special Olympics

In writing about the impact of the obesity epidemic on children with special health care needs, the researchers Paula M.Minihan, Sarah N. Fitch and Aviva Must deployed an ecological model describing five overlapping spheres of influence that impact each individual child. A child’s weight is impacted by a variety of factors, some close to home, others influenced by public policies made hundreds or thousands of miles away. Just as each sphere of influence can be part of the problem; it can also be part of the solution.

Individual

Children have to be involved in decisions about their own health and fitness. Parents can talk with them about healthy eating and the importance of physical activity and engage them in the quest for enjoyable healthy foods and pleasurable fitness activities. Children can set goals for themselves. These should not be weight loss goals, but goals for new behaviors – “eat fruit and vegetables every day” or “go to a yoga class once a week” or “learn how to swim.” As the mother of a young man with Down syndrome observes, “The most important thing is you have to get the ‘want to’ in them for it to work. You have to talk with them and not preach at them and tell them what to do.”

Interpersonal (Family, Friends, Peers)

Families must be committed not just to changing their children’s habits, but to changing their own, buying, preparing and eating healthy foods as a family and incorporating pleasurable fitness activities into family life. “You have to change the home environment,” says Dr. Fleming. “That means both parents and siblings. It sure makes it easier if everyone’s on board.”

The upside of this approach is that everyone reaps the benefits by feeling healthier and more energetic. Children also learn that healthy weight is part of healthy living, not something that is being imposed on them because of their disability.

Elisa, a mother whose 12-year-old son has autism, is determined to lose 100 pounds herself, while also getting her son Alex to a healthy weight by maintaining his current weight as he grows. To that end, she has made some changes. The family – including Alex’s younger brother – tries to go for a walk after dinner every night instead of watching a movie and Elisa makes sure to keep the house stocked with only healthy foods. “We haven’t won the battle,” she says, but she feels the whole family is now focused on being fit.

As children get older, peers are often more effective motivators than parents. “Everything you do with your friends you want to do more often,” says Anthony K. Shriver, founder and chairman of Best Buddies International, a program that fosters one-to-one friendships between people with and without intellectual disabilities. “If the person is involved in sports, the person with special needs will want to do it just to be with them.” Josh, a young man with Down syndrome who had never ridden a bicycle, has been doing 20 mile tandem bicycle rides with his friend Alice through Best Buddies. Neither one had much cycling experience when they started, but together they’ve completed three 20 mile fitness rides sponsored by Best Buddies and are getting ready for a 100 kilometer challenge in Washington DC. To train, they sometimes take spin classes together at the local YMCA. In the process, Josh has lost 30 pounds and has also learned how to ride his own bike, which he uses to get to church. His mother, Kay had wanted Josh to learn to ride a bicycle without much success. “He rode with Alice on the tandem bike and then he got the ‘want-to’ to ride a regular bike,” she says.

Whether it’s taking a class, joining a team or league, or just having a friend to do things with, interpersonal relationships can be key to developing healthy habits.“It doesn’t need to be a sport,” says Shriver. “It can just be getting your body moving.”

Organizational: Schools And Health Care Sites

Parents need to make sure that all the people in a child’s life are working together to promote healthy weight. In schools, that means educating teachers and staff about not using food for behavior modification and advocating for Adapted Physical Education (APE) at school. APE is a federally mandated component of special education services which ensures that physical education is provided to students with gross motor delays as part of that child’s special education services. Parents should make sure to address physical education in their child’s Individual Education Program (IEP).

Physicians may also need to be educated, as many are unfamiliar with the distinct needs of children with disabilities or the weight-gain consequences of prescription drugs. “On average, a person with intellectual disabilities would have to go to fifty different physicians before finding one with experience and training in intellectual disabilities,” says Dr. Corbin. Often children with special needs see a variety of specialists but don’t have a primary health care provider who can work with them on preventative weight management strategies.

Community: Neighborhoods, municipalities, counties

Many of our choices are determined without our realizing it by the built environment. Seemingly minor details like an absence of curb cuts, crosswalks, sidewalks, or working elevators are major impediments for people with disabilities who may be trying to go for a fitness walk or reach a swimming pool or inclusive exercise class. “The way communities are constructed right now, it’s a perverse incentive towards sedentary lifestyle,” says Dr. Fox.

But physical accessibility is only the first step. Recreation centers, health clubs, and sports groups also need to make accessible and inclusive fitness activities part of their regular offerings so that parents can bring the entire family to one place and have something that everyone can do. Playgrounds need accessible play structures. Parks should have accessible trails. “Beyond the Americans with Disabilities Act is the whole area of program accessibility,” says Dr. Rimmer. “We’ve gotten to the first level which is access. The next level is participation which is a much different animal.”

Society: National and state policies, laws and regulations

Researchers and policy makers looking to understand and combat childhood obesity must make sure to include children with special needs in their studies, plans and policies. The Americans with Disabilities Act was a major first step, but only a first step towards better access for people with disabilities. Other policy initiatives must focus on improving the availability of healthy foods in schools and neighborhoods and decreasing the amount of junk food advertising and marketing aimed at children.

See the Finding Balance report for more information about obesity and special needs children.