Promoting Health in People With Disabilities
For years, the most widely accepted definition of health was the absence of disease. This antiquated definition may be one of the strongest reasons for the lack of attention given to people with disabilities in health promotion. If a person had a congenital disability such as spina bifida or cerebral palsy, developed multiple sclerosis, or had severe asthma, the individual was not considered a good candidate for a health promotion program because the aim of health promotion was not to take care of the 'sick' and 'disabled,' but rather to prevent disease and disability in the 'healthy.'
Health for all of us shifts back and forth on a continuum from low (poor) to high (excellent) and high to low. Take, for example, the person who exercises regularly and has good dietary habits. He or she may he at the high end of the health continuum at the age of 40 years, but after being diagnosed with cancer and going through several chemotherapy treatments, there would be a shift in health to the lower end of the continuum. Once treatment is completed and the person resumes a healthy lifestyle, there could presumably be a shift back to the higher end of the continuum.
Variations in health during the course of a person's lifetime are no different for people with disabilities. Someone who has sustained a spinal cord injury but practices good health habits by eating properly, exercising, getting regular medical checkups, preventing pressure sores, and maintaining adequate body weight and could be considered on the high end of the health continuum. Alternatively, a person with spina bifida who gets frequent pressure sores, has a poor diet, does no exercise, and is overweight would most likely be in poor health and at the low end of the continuum because these behaviors will often have unwanted consequences. With the right treatment plan, however, this person could improve his or her health.
Once members of health care industry accepts the reality that health is not a static entity but rather a dynamic one that is multifactorial in nature and shifts back and forth on a continuum during the course of a person's lifetime, they will find it easier to understand how a person with a disability can improve or worsen his or her health in the same manner as anyone else. The only difference, however, is that people with disabilities often start at the lower end of the health continuum due to secondary conditions that overlap with their, primary disability. In some respects, it could be argued that this is even a greater reason for shifting some of the focus in health promotion to people with disabilities, because a minor illness could compromise their functional mobility and potentially lead to an earlier decline in health and a dependency on other individuals for care.
People with disabilities are highly susceptible to secondary health conditions. In a report entitled 'Preventing Secondary Conditions Associated With Spina Bifida and Cerebral Palsy', it was noted that secondary conditions affecting people with disabilities include osteoporosis; osteoarthritis; decreased balance, strength, endurance, fitness, and flexibility; increased spasticity; weight problems; depression; and other conditions.
Aday has characterized the health care needs of people with disabilities as extensive: (1) their needs are serious, in many cases, debilitating or life-threatening ones; (2) they require an extensive set of medical and nonmedical services; (3) the growth in their number and the seriousness of their needs are placing greater demands on the medical care, public health, and related service delivery sectors; (4) their complex and multifaceted needs are, however, not adequately met through existing financing or service delivery arrangements; and (5) federal, state, and local policy makers are increasingly concerned about how to deal with the demands they place on the existing systems of care, as well as about how to aid the growing number of Americans at risk for serious physical, psychological, and/or social health problems. These concerns are driving the need for health promotion strategies that reduce or eliminate secondary conditions in people with disabilities.
A collaborative effort on the part of federal funding agencies, health care providers, researchers, consumers, and advocates aimed at raising the level of awareness concerning the health promotion needs of people with disabilities is finally emerging. One of the major themes behind the independent living movement is inclusion and participation in all aspects of society, including the right to maintain good health. Health promotion for people with disabilities is now being addressed by several major agencies, including the Institute of Medicine, the Centers for Disease Control and Prevention, the National Center for Medical Rehabilitation Research, the National Institutes of Health, and the National Institute on Disability Research.
In a recent working document, Healthy People With Disabilities 2010, the definition of health promotion for people with disabilities consists of 4 parts: (1) the promotion of healthy lifestyles and a healthy environment, (2) the prevention of health complications (medical secondary conditions) and further disabling conditions, (3) the preparation of the person with a disability to understand and monitor his or her own health and health care needs, and (4) the promotion of opportunities for participation in commonly held life activities.
This definition clearly views the magnitude of a disability in relation to the person's interaction with the environment. In many instances, the environment can be considered the barrier to good health practices and not the disability. For example, by making a fitness center accessible to a person who uses a wheelchair or having labels on medicine bottles in different forms of print for people who are blind or visually impaired, the disability is no longer the primary barrier to improving health. By eliminating certain environmental obstacles, the process of promoting health in individuals with disabilities is greatly enhanced. The emphasis in the independent living movement is on consumer control and direction of their own health, with professionals assisting in altering the environment so that the individual has access to health promotion activities aimed at the general population.