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by Lynda Anderson and James Flowers
Wellness has been described as “multidimensional, positive health, possessed by the individual” (Corbin & Pangrazi, 2001). Wellness is more than physical health, however. A person who experiences optimum wellness also has mental, emotional, social, vocational, and spiritual health, and the opportunity to know about and choose activities that support overall wellness. The importance of wellness for people with intellectual and developmental disabilities (IDD) was identified by the U.S. Surgeon General (2005) when he noted that people with IDD need to have the opportunity to “protect, preserve and improve their health in the same ways as everyone else” (p. v).
For much of the 20th century, the medical model was the primary approach in addressing the health of people with IDD. The medical model is an individualist perspective of disability that sees deficit or inability to function as a problem inherent in the individual (although not necessarily the fault of the individual) (Brandt & Pope, 1997). Health promotion was mainly focused on preventing disability and little thought was given to the health and wellness needs of people with disabilities. Beginning in the mid-20th century, new models of talking about disability emerged, thanks in part to the Disability Rights Movement and the work of dedicated families and self-advocates. The models began to move away from solely focusing on individual impairment or deficit, and towards biopsychosocial models in which the importance of the impact of biological, emotional, and environmental issues on health and well-being is acknowledged (Krahn, Putnam, Drum & Powers, 2006). There is now a greater understanding that these forces interact to affect the ability of individuals to maintain as high a level of health and well-being as possible.
In the past three decades there has been increased attention to health promotion and improving the health of people with IDD (Anderson, et al, 2013). In general, these efforts have focused on physical activity and nutrition. However, supporting optimal wellness that encompasses not only the physical health, but all areas of human functioning, including mental and emotional health, spirituality, meaningful activities, life purpose, financial health, and sexuality, needs greater attention. Physical activity and nutrition are a critical piece of health and wellness, however, health promotion for people with IDD needs to address these other areas of wellness in order to support flourishing.
Flourishing means “to be filled with positive emotion and to be functioning well psychologically and socially” (Keyes, 2002, p. 210). Supporting flourishing means supporting several dimensions of personal functioning. Positive psychological functioning, which encompasses things such as having a purpose in life, having autonomy, and experiencing personal growth (Keyes, 2005), is one dimension. Feeling social acceptance, contributing to society, and being integrated into society are examples of the second dimension of personal flourishing. Emotional well-being, which encompasses self-identified quality-of-life and a positive outlook, is the third dimension of flourishing (Keyes, 2005).
What gives each of us a sense of well-being or the ability to flourish is unique and is individually defined. While there may be some specific needs related to health and wellness for people with IDD (such as addressing co-existing conditions, physical or sensory accessibility needs, or medications a person might be required to take), the meaning of optimal health and ways of achieving that for individuals with IDD are just as unique as for any other person.
Persons with IDD may need more tailored support in identifying their wellness goals and aspirations. This identification and planning process may require allocation of staff time or otherwise intentional support from personal caregivers. For individuals living in residential or supportive living arrangements, in particular, the attainment of individual wellness goals may be contingent on sufficient buy-in from both support staff and organizational leaders. This might include the intentional inclusion of volunteers in providing opportunities to develop meaningful unpaid relationships with community members and inclusion in community activities that support flourishing (e.g., an exercise class or participation in a faith community). It may also include an organizational focus on wellness (including for employees), or a demonstrated flexibility in adapting organizational regulations to meet the wellness goals of individuals served.
Moving the support of flourishing for adults with IDD forward requires that some areas of wellness in relation to people with IDD need to be further addressed in wellness research and program development. For example, having a meaningful vocation, whether it is paid employment or some unpaid activity, is associated with both better health and a higher quality of life. Meaningful employment should be considered as an important factor in optimal health and wellness in both health and employment program development and research.
The need for intimacy is a natural part of the human experience that is often overlooked when thinking about supporting the health and wellness of people with IDD. Maslow’s seminal work on human motivation (1943) describes a hierarchy of needs that all people experience and how the drive to meet those needs creates individual motivation. Wellness can be thought of as residing in the individual attainment of higher needs such as love/belonging, esteem, and self-actualization. To support people with disabilities in achieving love, esteem, and self-actualization, practitioners, researchers, and community members must be willing to engage in conversations that recognize the need for intimacy and be willing to support healthy relationships.
Having positive social support has been shown to be an important factor in health. People with little social support experience greater rates of chronic disease and premature death. People with IDD are often socially isolated and have limited contact with people other than paid caregivers. To flourish, having social connections in which one both receives and gives support to people who care about us is critical, as is having a sense of belonging among a community of people beyond paid caregivers (Amado, Stancliffe, McCarron & McCallion, 2013). However, creating social connections is overlooked in many health and wellness interventions for people with IDD despite the high levels of isolation.
Having a connection to nature is an important aspect of wellness and flourishing that is gaining greater attention for people with and without disabilities. Studies have shown that connection to nature – even things as simple as walks in a park – can have both physical and mental health benefits such as lowering blood pressure, improving mental health, and reducing pain (Hartig, Mitchell, DeVries & Frumkin, 2014). While this is a growing area in wellness and disability research, finding ways to support connections to nature and opportunities to be outdoors can be beneficial and are worth considering in wellness interventions.
Perhaps the central factor underlying optimal wellness or flourishing is autonomy. People with IDD generally have little opportunity to exercise self-determination or autonomy in relation to their health and wellness. Often, increases in independence have been associated with greater health concerns such as obesity. However, it has been demonstrated in some interventions that, given adequate training and support, adults with IDD do choose health-promoting behavior (Wullink, et al., 2009). This remains an under-addressed area of research, program development, and translation into practice for both for individuals with IDD and caregivers and support staff. Including people with IDD in leadership roles in developing and leading opportunities for wellness interventions is an important step in promoting autonomy.Autonomy goes beyond personal aspirations to having a greater voice in policies and research that directly affect one’s life. Researchers, service providers, policymakers, and self-advocates need to work together to support integrated models of research that value wellness, and research as determined by disability advocacy groups (Krahn, et al., 2006). Moving forward, researchers and funders must develop more collaborative partnerships with individuals with IDD, disability service organizations, and community health and wellness agencies (e.g., YMCAs) that will have the greatest impact in terms of supporting wellness for persons with intellectual and developmental disabilities.
Efforts to address the health disparities experienced by people with IDD over the past three decades have played an important role in the growing efforts to improve access to health and wellness activities for everyone. However, to promote optimal wellness, or flourishing, more needs to be done to address all the areas of the human experience. Access to physical activity and a nutritious diet are fundamental to good health, but spirituality, social connectedness, intimacy, connections with nature, economic opportunity, and autonomy are also important aspects of overall wellness that need to be addressed when thinking about health and wellness policies and programs. Supporting individuals with IDD to grow in each of these areas is the key to supporting them to flourish.
Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 360-375.
Anderson, L. L., Humphries, K., McDermott, S., Marks, B., Sisirak, J., & Larson, S. (2013). The state of the science of health and wellness for adults with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 385-398.
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Keyes, C. L. M. (2002). The mental health continuum: From languishing to flourishing in life. Journal of Health and Social Behavior, 43, 207-222.
Keyes, C. L. M. (2005). Mental illness and/or mental health? Investigating axioms of the complete state model of health. Journal of Consulting and Clinical Psychology, 73, 539–548.
Krahn, G. L., Putnam, M., Drum, C. E., & Powers, L. (2006). Disabilities and health: Toward a national agenda for research. Journal of Disability Policy Studies, 17(1), 18-27.
Maslow, A. H. (1943). A theory of human motivation. Psychological Review, 50(4), 370.
Office of the U.S. Surgeon General (2005). The surgeon general’s call to action to improve the health and wellness of persons with disabilities. Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK44667/
Wullink, M., Widdershoven, G., Van Schrojenstein Lantman-de Valk, H., Metsemakers, J., & Dinant, G. J. (2009). Autonomy in relation to health among people with intellectual disability: A literature review. Journal of Intellectual Disability Research, 53(9), 816-826.
Lynda Anderson is Research Fellow with the Institute on Community Integration, University of Minnesota, Minneapolis. She may be reached at LLA@umn.edu or 612/626-7220. James Flowers is a former Graduate Research Assistant at the Institute.
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Citation: Traci, M., Hsieh, K., Anderson, L., & Gaylord, V. (Eds.). (Winter 2016). Impact: Feature issue on supporting wellness for adults with intellectual and developmental disabilities, 29(1). [Minneapolis: University of Minnesota, Institute on Community Integration and Research and Training Center on Community Living]. Retrieved from https://ici.umn.edu/products/impact/291/
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/291/291.pdf.
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