Aging is a fact of life, and although many may not be well prepared for typical aging changes, current marketing suggests this is not an unexpected event
However, aging with a disability can be an overwhelming and alarming situation, especially for those experiencing changes in function or health at an earlier-than-expected time.
These changes can also mean the difference between living alone with minimal to no support and requiring a more restrictive living environment, including a move to an institutional setting, at a young age.For years, children with disabilities and their families have been told that health and functional status, mobility, and musculoskeletal problems essentially stabilize by early adulthood. However, as more people with lifelong mobility and other impairments live through their adult years, it is apparent that mobility, functional status, and musculoskeletal changes commonly continue into adulthood. In fact, questions and concerns about mobility, function change, and pain are common among the majority of adults with mobility impairments caused by any etiology (1).
Despite the personal accounts and experiences of those with disabilities, their families, and many clinicians, there are no longitudinal studies on disabilities and few surveys or statistics that can document these aging changes and risk factors for them. Present statistics estimate that the number of Americans of all ages with disabilities (broadly defined by impairment, functional limitation, or participation restriction) exceeds 40 million, and may be closer to 50 million (2). However, these are estimates using multiple national surveys, cross-analyzed in an attempt to cover all ages and living situations. Many of these surveys exclude those living in institutions or assisted living programs (where a number of adults with congenital or childhood-onset disabilities may live), and many exclude young children or adults younger than retirement age. There are no national surveillance programs that monitor the trajectory of aging with a disability by specific disability condition, by severity, or by age of onset.
Data do identify that more infants, children, and young adults are surviving with conditions that were at one time fatal, and children and young adults are completing and surviving long-term risk treatments (eg, chemotherapy, radiation, surgery). Approximately 500,000 children and youth with special health care needs turn 18 years annually (3). Thus, there is an increasing population of adults with disabilities, with accompanying risks for long-term complications and disabilities. As well, there have been declines in a few health conditions in childhood that contribute to adults with disabilities statistics. The incidence of spina bifida dropped from 24.9 to 18.9 per 1,000 live births with the use of folic acid supplements in women of childbearing age (4). Lead exposure, a risk factor for neurodevelopmental problems, has dropped significantly, with reported lead levels now below 2% (5). These and other advances in medical care and public health practices will change the face of the type of disabilities seen in adults with early-onset disabilities in the future.Table 15.1 identifies the leading chronic health conditions as causes of activity limitations, reported through the National Health Interview Survey 20022003. As is noted, listed chronic conditions do not list disability types typically identified in medical rehabilitation systems as identified by diagnosis, ICD-9 codes, or diagnostic-related groups, but rather by more generalized conditions. As noted, we have little information that is disability-specific or that can offer details about a specific disability over a life course. In comparing the listed function and medical conditions for those younger than 17 years, there is no commonality of conditions at age 18 years and older other than mental illness or emotional problems. The pediatric chronic conditions are largely cognitive and mental healthbased and, for adults, are related to typical health conditions such as cardiovascular or pulmonary conditions.
The only estimate of adults with early-onset disabilities is by Verbrugge and Yang (6) using data from the 1994 National Health Interview Survey Disability Supplement, Phase 1, suggesting that 7% to 9% of adults reporting a disability had onset before the age of 20 years. The surveillance data available imply that the prevalence of disability diagnoses typical of rehabilitation program settings is in a minority, and usually not the primary focus of public health, surveillance, and policy programs.All health and function information regarding aging in congenital and childhood-onset disabilities that is known is derived from existing databases developed for service or financial reasons, case studies and series, limited survey information, cross-sectional studies, opinion pieces, and the like. Much of the conventional wisdom in this area has been communicated through the network of persons with disabilities and, more recently, through books and texts. There is minimal information regarding the impact of commonly practiced interventions over a lifetime, including environmental approaches to barriers. Health care providers receive minimal education regarding disability and/or aging with a disability during undergraduate and graduate education. Therefore, health care providers and consumers have limited knowledge from which to base decisions regarding adult health issues and anticipated changes in function.
This chapter will provide a conceptual framework regarding aging as it relates to congenital and childhood-onset disabilities, review general issues of health and function across early-onset disabilities, discuss lifelong functional status and health issues of adults with specific early-onset disabilities, and consider the issues surrounding health care access and transitioning from pediatric to adult care services.
15.1
Leading Chronic Health Conditions Reported Through the National Health Information Survey as Causes for Activity Limitation (2002-2003)
CHRONIC CONDITION
NUMBER OF PEOPLE WITH ACTIVITY LIMITATIONS
| Under 5 years | 5-11 years | 12-17 years | |
| Speech problem | 10.7 | 18.5 | 4.6 |
| Asthma or breathing problem | 8.2 | 8.4 | 8.3 |
| Mental retardation or other developmental problem | 7.0 | 10.2 | 9.6 |
| Other mental, emotional, or behavioral problem | 2.7 | 12.0 | 14.2 |
| Attention deficit or hyperactivity disorder | 2.1 | 17.6 | 21.8 |
| Learning disability | 2.9 | 23.3 | 33.9 |
| 18-44 years | 45-54 years | 55-64 years | |
| Mental illness | 12.9 | 23.1 | 24.1 |
| Fractures or joint injury | 7.0 | 15.5 | 20.6 |
| Lung | 5.0 | 12.6 | 25.6 |
| Diabetes | 2.5 | 13.4 | 33.4 |
| Heart or other circulatory | 5.9 | 28.4 | 74.3 |
| Arthritis or other musculoskeletal | 22.2 | 61.9 | 100.7 |
Adapted from Ref.
10.