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Aging with a Disability

Increasing survival and increasing life expectancy influence health and quality of lifeamong those who acquire disability at birth or early in life. For example, people bornwith Down syndrome had a life expectancy of 9 years in 1929, 12 years in 1949, and49 years in 1997 (Yang, Rasmussen, & Friedman, 2002). Aging with a disabilityremains largely uncharted territory (Trieschmann, 1987; Verbrugge & Yang, 2002;Klingbeil, Baer, & Wilson, 2004; Kailes, 2006). In part, the experience is new to thehuman condition. Few people with severe disabilities lived into middle and old age.National population-based cross sectional surveys are largely not designed to capturethe dynamic experience of a small group of people who age with a disability. In somerespects, aging and acquiring a disability is a fundamentally different experience fromhaving a disability and getting older. The former is more defined by the aging community,and the latter is largely defined by the disability community. While the sciencearound aging with a disability is not well developed, there is sufficient knowledge todefine the public health foundations of this important topic.

Population-based surveys and administrative data sets from insurance, healthrecords, and schools provide sufficient detail and sample size to reasonably describethe population of children with disabilities. Research regarding children withdisabilities tends to focus on specific conditions, so a literature has evolved aroundDown syndrome, cerebral palsy, and spina bifida. Investigations regarding schoolperformance, function, and family support have centered on these conditions.As children with disabilities leave the school system and grow into adults and olderadults, knowledge about their health, health behaviors, and circumstances dropsprecipitously. The lack of longitudinal surveys increases the difficulty of followingthe trajectory of people with disabilities as they age. The evolving knowledgeregarding aging with a disability generally stems from small clinical samples thathave tracked people over time. These studies create our current foundation ofknowledge.

The 2007 Institute of Medicine (IOM) report, the Future of Disability in America,dedicated an entire chapter to the topic of aging with a disability and secondaryconditions among people with disabilities (Field & Jette, 2007). This chapterprobably represents the most up to date broad summary of the science of aging witha disability. The IOM chose to combine the topics of aging with a disabilityandsecondary conditions into one discssion because the two concepts tend to merge.The idea of aging with a disability is that a person may acquire a disability early inlife. That person’s health and quality of life can range from very poor to extraordinary.At some point, however, age-related changes occur because they are so verycommon in the older population. Hypertension and arthritis are common conditions.The effects of these changes may range from marginal to profound.Some investigators define secondary conditions in a narrow sense as health-relatedchanges (Turk, 2006), and others (Lollar & Crews, 2005) think of secondary conditionsin a broader way to include health, mental health, and social circumstances.Efforts to understand aging with a disability have tended to focus on specificconditions – Down syndrome, mental retardation, cerebral palsy, post poliosyndrome, spinal cord injury (SCI) and to a very limited extent, traumatic braininjury (TBI). Clinical samples may be large enough to make generalizations.Moreover, the variability among these conditions is so great that making crosscuttinggeneralizations is quite difficult.

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