By Abbie Kirkendall
Diversity in aging includes older individuals with developmental disabilities, a condition defined by the Developmental Disabilities Act. As life expectancy has increased for individuals with developmental disabilities, so too has the probability of developing progressive chronic illnesses such as Alzheimer’s, cardiovascular disease or cancer. As a result, providing quality aging services for older individuals with developmental disabilities is an increasing concern (Botsford, 2000, 2004; Botsford & Force, 2004; Todd, 2002). Additionally, addressing issues for older individuals with developmental disabilities is not simply a matter of duplicating existing age-based services. Instead, there are distinctive issues such as communication barriers and whether the elder with developmental disabilities has mental capacity to provide consent for medical treatment (Janicki et al., 2002).
Consistent communication among service providers is even more critical when working with individuals with developmental disabilities (O’Brien & O’Brien, 2002). Challenging communication issues can arise for medical personal who may have limited experience with individuals with developmental disabilities (Tuffrey-Wijne, 2003). Non-verbal individuals with developmental disabilities may express themselves through behaviors such as pacing or self injury. These behaviors may indicate physical or emotional discomfort that staff with limited contact may attribute to the individual’s developmental disability, which can result in inappropriate services being provided. Fortunately, staff that has longstanding relationships is positioned to more accurately interpret the multiple forms of communication, including such behaviors and body language.
Because of the challenge of assessing mental competency, individuals with developmental disabilities are vulnerable to being deemed incompetent mistakenly (Bostford & King, 2005; Stein, 2008). Those without a guardian may have decisions about whether to progress or withhold treatment made by medical personal and/or the organization providing care for them that do not necessarily reflect their wishes. (Botsford & King, 2005). Design of a standard protocol for determining capacity would, to some extent, eliminate such problems.
The differing levels of individual mental abilities among the aging developmental disabilities population call for an approach based on each individual’s level of disability and particular forms of communication. Accordingly, providing individualized care will be the most effective in addressing the needs of older individuals with developmental disabilities. Effective coordination and integration of services between the aging and disability fields require frequent training to ensure that professionals acquire in-depth knowledge of the particular needs of older individuals with developmental disabilities (Janicki et al., 2002). Acquisition of such knowledge is an essential first step toward implementation of a specialized interdisciplinary team that has consistent interaction with each other, individuals with developmental disabilities and family members.
Abbie Kirkendall, a John A. Hartford Foundation Doctoral Fellow, recently received her doctorate in social welfare from the Graduate School of Social Work, University at Buffalo, The State University of New York, where she taught theories of organization behavior and development and health and disability in social work. Abbie’s research interests include end-of-life care for the elderly, transitional services for individuals with disabilities and end-of-life care for older individuals with disabilities.