Health issues for adults with developmental disability

Abstract

The aim of this paper is to review recent literature on health issues for adults with developmental disability and reflect on how this research informs service provision, future research work, and social and health policy. Studies based on mortality data are most likely to aim at identifying individuals most at risk of premature death, and some researchers argue that health-oriented service systems appear ill-equipped to address the needs of the at risk groups. Morbidity studies highlight specific health concerns found in this population and commonly report high rates of untreated, yet treatable, conditions. The emerging literature on the behavioral determinants of health suggests risk of preventable morbidity and mortality because of the lack of health-promoting behaviors, particularly in relation to diet and physical activity. Of particular interest in this literature is the affect of living arrangements on health promoting activities. This paper concludes that future directions in health research for adults with developmental disability will be concerned with the complexity of the interactions between biology, pathology, and behavioral and environmental determinants. More use of self-reported health studies is suggested, as well as further exploration of effective strategies of health promotion and health promoting decision-making and self-determination among this population.

Introduction

Historically, the most widely accepted definitions of health have focused on the absence of disease and disability (Rimmer, 1999). On the basis of this narrow perspective, people with disabilities have often been portrayed as unhealthy with little or no regard for health prevention, maintenance, or promotion strategies. As Tighe (2001) eloquently stated “persons with physical or mental impairments are often granted a permanent visa to the kingdom of the sick …” (p. 511). It may be because disability is often equated with ill health that much of the research on health and well being for people with developmental disability has focused on possible consequences that follow as a result of disability, such as increased prevalence of disease. Yet, to understand health as a complex and dynamic construct it is important to take account of many factors, including potential determinants that may reduce or enhance health, as well as the processes and features of disease. To date, few researchers have paid attention to the health of people with disability beyond descriptions of mortality and morbidity. Increasingly, however, research attention is being directed towards examining the health of people with developmental disability using various health-related outcome perspectives.

Although health issues for people with developmental disability have often been associated with the quality and quantity of health care, health is now much more broadly defined than simply by factors associated with the management of disease and disability (Allan, 1999). Most current perspectives define health as a multifaceted construct that includes physical, mental, and social states (Kickbusch, 1997). This multidimensional approach to understanding health also incorporates environmental and behavioral determinants, and researchers have increasingly used such perspectives to examine the health and well being of people with developmental disability. Integral to this notion is that more adults are now living in the community and accessing community-based facilities in comparison to pre-integration. Thus, along with health concerns associated with disability, determinants of health may also be congruent with those risk factors relevant for adults in the general population, such as the effect of sedentary living and poor diet leading to obesity. Some researchers have suggested that, although health issues may be complex for adults with developmental disability, their health needs appear to be less well catered for and understood than those of children (Beange & Bauman, 1990).

The health and well being of adults with developmental disability has been examined in research using a number of different, although potentially interrelated health perspectives. The aim of this paper is to explore these perspectives and discuss how different outcome measures define the concept of health, and how these perspectives inform researchers, service providers, and policy makers about health issues for adults with developmental disability. To begin, recent research on mortality and life expectancies are briefly reviewed, followed by consideration of how mortality outcomes are used to describe the health of people with disability. Next, studies into the physical and mental health problems for adults with developmental disability are examined with comment on how research on ill health in the population informs providers and policy. Research investigating health characteristics and possible determinants are also explored, and finally, future research directions are suggested for this population.

For the purpose of this paper, the term developmental disability is used to describe individuals with intellectual disability, cerebral palsy, autism, spina bifida, Down syndrome, and other genetic syndromes, such as Fragile X syndrome. This term, therefore, describes individuals with a range of conditions, including those with and without intellectual disability. Although the use of a broad categorical term, such as developmental disability, may inadequately account for the heterogeneity of group differences within the population, where possible, classification of individuals involved in the research has been identified.