ACCESS TO HEALTH CARE

Access to health care for young adults has been problematic for funding reasons as well as transition-of-care difficulties (see Figure 21.2). Lack of insurance has been highlighted, and is as common among young adults without disability as those with disability, as noted through the National Health Information Survey (378). However, adults with disability had eight times greater odds of reporting unmet health care needs and six times greater odds of having no usual source of care, compared to those without disability. The majority of young adults with disability reported a gap in their insurance coverage, and many were uninsured over a 3-year period (379).

FIGURE 21.2 Characteristics that affect successful transition of care.

Source: Adapted from Ref. (377). Kelly AM, Kratz B, Bielski M, Rinehart PM. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics. 2002;110:1322-1327.

Access also involves environment, attitudes, and systems. Architectural barriers have been addressed through the Americans with Disabilities Act, although accessible health care providers' offices and accessible examination and procedure tables continue to be available on only a limited basis. Attitudinal barriers are more difficult to remedy, and involve both consumers and providers. To this day, there are no requirements in undergraduate and graduate medical school education to acquire disability-specific knowledge or skills, or to experience routine interactions with people with disability (22). Rehabilitation clinicians may need to ask more direct questions of their patients regarding secondary conditions and additional health concerns to better identify conditions, begin management, or discuss management with a primary care physician. Physiatrists can act as a resource for primary care providers, who likely have limited knowledge regarding persons with lifelong disability. Consumers with communication or cognitive impairments (eg, hearing impairment, speech production impairment, brain injury, ID) may need more time to communicate, require an interpreter, or require personal preparation time for the appointment in order to have their needs conveyed; modification of appointment times, with preplanning and written lists of concerns, can often be helpful. Consumers may seek help only late in the course of an acute medical condition or change because of previous difficulties managing the system. Specifically, consumers report that their routine health care providers know little about their disability and its impact on health and function (43).

HEALTH AND WELLNESS AGENDA

As a result of the steady improvement in medical care and social support systems during the past 50 years, persons with disability are healthy, conducting active and productive lives, and generally living longer. The medical paradigm must now shift from that of illness and disease to one of health and wellness. The health care delivery system must view persons with disability through a typical health maintenance and preventive medicine approach. This requires a change in attitudes and care models. Both prevention and promotion strategies should be employed: prevention of activities that lead to illness and disease (eg, smoking cessation, dietary discretion, routine laboratory and examinations, protected sexual activity) and promotion of activities that improve general well-being (eg, stress management, exercise) adapted to meet individual requirements and performance (Table 21.9) (380,381,382). However, positive health behaviors require social, health, and community resources. The more resources a person has, the more likely that individual will engage in health promotion and protective behaviors (383). Again, access is an important issue. While the Affordable Care Act has placed prevention as a high priority, it is not clear how these services will be available and modified for people with disability (384). Availability of information in appropriate modalities and the education of consumers are important. To participate in positive health behaviors, one must be interested, be ready to make changes, have the needed resources, and have a supportive environment. Early involvement of adolescents with mobility impairments in health promotion activities may pave the way for maintaining these behaviors into adulthood.

Since musculoskeletal conditions are the most common age-related changes and secondary conditions that affect performance, it would seem most reasonable to view typical physiatric strategies and interventions as preventive management techniques. Use of adaptive equipment, energy-conservation techniques, joint protection, and ergonomic positioning may enhance function, decrease musculoskeletal complaints, and possibly prevent or delay some functional changes. Personal attitudes (of the person with a mobility impairment or his or her personal support system) may have to change before a person with impaired mobility will consider such assistance or be supported in considering the value of employing supportive (less independent) techniques.

Exercise is a well-known health-promoting behavior, and its effects are positively demonstrated in persons with disability (44,385-389). Benefits of a regular exercise program include improved fitness, weight reduction, improved mood, and improved sleep. It is also known that persons must be judicious in participating in exercise programs, given the issues of fatigue and pain. Of course, care must be taken in prescribing exercise for persons with impaired mobility; they should participate in an appropriate program of exercise or activity, especially keeping in mind their risk factors for musculoskeletal injury. Jogging or running started by young adults without disability more often resulted in discontinuation of exercise because of joint pain than for persons who started a similar exercise program in their middle years, leading one to believe that long-term, high-impact exercise may result in pain. Aquatics programs can eliminate the wear and tear to joints. Adults with CP tend to report perceived changes in balance and then fear of falling, which usually improves with a general fitness program. Exercises, including strengthening exercises, are not contraindicated for persons with spasticity. Generally, adults and young adults with DD do not participate in routine fitness or exercise programs. This may be as much from limited knowledge in this area as from attitudes of care providers and persons with disability relative to exercise as a self-directed, nonmedical, or leisure activity. Exercise programs at home, in a health club, or as part of an individual recreation program (with or without modifications) must be initiated earlier than adulthood to achieve long-term participation. And, just as in the nondisabled population, priorities for persons with mobility impairment should include exercise and fitness.

TABLE 21.9 HEALTH PREVENTIVE SCREENING SERVICES

Abbreviations: BMI, body mass index; BP, blood pressure; CAD, coronary artery disease; CNS, central nervous system; HPV, human papillomavirus; PSA, prostate-specific antigen.

Source: Adapted from Refs. (380-382).