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).

Characteristics that affect successful transition of care.

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).


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.






>18 years and annually; screening for asymptomatic sustained BP >140 mmHg systolic or 90 mmHg diastolic

Consider earlier and more frequent check with risk for metabolic syndrome; use appropriate sphygmomanometer for limb length and circumference—automatic digital models may give spurious result, watch for spasticity trigger


Age and chronic condition dependent; recommendations are for those never vaccinated in childhood and those previously vaccinated, with adult schedules for: influenza, tetanus/diphtheria/pertussis booster, zoster, HPV, pneumococcal, meningococcal, hepatitis, and Hemophilus influenza

Consider immunizations; no recommendations based on disability; recommendations based on pregnancy, weakened immune system, HIV, renal disease, heart disease, diabetes, asplenia, chronic alcoholism, and chronic liver/ lung disease

Cardiovascular Lipid

Men: >35 years; possibly 20 years with CAD risks Women: >45 years with CAD risks; possibly 20 years with risks

None known

Abdominal aortic

Men: age 65-75 years if they have ever smoked

Accessible procedure environment



Men and women: colorectal

Men and Women: lung

Screening ages 50-75 years; fecal occult blood testing, sigmoidoscopy, or colonoscopy used with varying risks/benefits

Screening adults aged 55-80 years with 30 pack-year history, who currently smoke, or have smoked within the past 15 years with CT lung; not recommended if smoking was discontinued 15 years previously

Level-appropriate education for all tests

and procedures Accessible examination and procedure

environment May need sedation to complete

procedure—must consider risks/

benefits before proceeding with screen

and sedation

Women: breast

Screening for positive family history of breast, ovarian, tubal, peritoneal cancer; may include genetic counseling and testing in high-risk individuals

Biennial mammogram for women aged 50-74 years; earlier mammogram depends on context

Insufficient data to support clinical breast exam and self-exam—not recommended

Insufficient data to support use of MRI

May need personal assistant for procedures

Women: cervical

Screening with Pap smear: ages 21-65 years every 3 years—or—for ages 30-65 years every 5 years with cytology and HPV testing; HPV testing, if positive, may prolong screening to women older than 65 years

No screening for women > 65 years and if they have no risk

No screening if they have had hysterectomy and no

history of high-grade precancer or cervical cancer Use of HPV vaccine does not alter screening

Men: prostate

PSA not recommended to screen for prostate cancer

Metabolic/endocrine Obesity

Screening for all using BMI, counseling and behavior interventions offered if BMI > 30 kg/m2

BMI does not reflect body fat, which is the measure of interest; height/weight measurement may not be accurate in disability

May need modifications for activity and

behavior interventions Monitor for metabolic syndrome

Diabetes mellitus type 2

Screening for asymptomatic sustained BP >135/80

mmHg, with or without treatment Progress to fasting plasma glucose, 2-hour postload

plasma glucose, or hemoglobin A1C

Use appropriate sphygmomanometer for limb length and circumference— automatic digital models may give spurious result, watch for spasticity trigger

Mental health Depression

Screening if able to diagnose, treat, follow-up

May require modification to queries; may need modifications in support to diagnose and treat


Growing data to recommend screening in general population

Important to question in ID of all types at younger-than-expected ages


Screening not recommended for general population

High incidence of violence and abuse in disability; offer opportunity to discuss

Tobacco use

Recommend regular screening and offer cessation interventions

None known


No screening recommendation for the general population; exercise guidelines available through cdc. gov/physicalactivity/everyone/guidelines/adults.html

Exercise is an important activity for those with motor impairments; has been shown to be effective for improved performance, pain control, weight management; important to query about exercise/ activity, refer to accessible program

Aging Vision

Presbyopia, cataract, macular degeneration, and

glaucoma increase with increasing age—unclear that screening is effective

Accessible examination; concern in CP, SB (related to progressive CNS pathology), ID, DS


>50 years, hearing decreases—unclear that screening is effective

Accessible examination; concern in CP, ID, DS, brain cancer survivors

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).

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