Individuals with intellectual and developmental disabilities are living unprecedentedly longer lives primarily due to the long-term benefits of the deinstitutionalization movement and widespread improvements in health outcomes. However, the consequences of this protracted aging process are significant, complex, and often poor not only for the individuals and their caregivers but for the mainstream healthcare community. This article will explore, utilizing a constructionist perspective, how these challenges evolved from a nonissue to an impending crisis in less than 25 years. Additionally, present-day efforts by researchers, policymakers, and practitioners to address these challenges will be explored and recommendations will be made for future directions.
The American population is growing rapidly and the fastest growing segment of the population is older adults (Ortman, Velkoff, & Hogan, 2014). These adults are disproportionately more likely to have multiple chronic conditions when compared to younger segments of the population (Freid, Bernstein, & Bush, 2012). Individuals with multiple chronic health conditions account for 95% of all Medicare expenditures; further, the tendency toward aggressive, often-unwanted end-of-life care results in 25% of these costs being incurred during the last year of life (Riley & Lubitz, 2010). Similar to the general population, the number of older adults with intellectual and developmental disabilities (IDD) residing in the United States is growing exponentially and at an unprecedented rate. This population is expected to double from 650,000 to 1.2 million by 2030. Although they experience similar chronic conditions as the general population, people with IDD do so in an environment of tremendous ambiguity in regards to decision-making rights and with complex, interdisciplinary healthcare needs (Heller, 2008; Institute of Medicine, 2014).
In a relatively new phenomenon, most individuals with IDD have lifespans approaching that of the general population, except for some individuals with more severe IDD and Down syndrome for whom the mean age of death is in the mid-50s (Heller, 2008). Older adults with IDD experience significantly more complex health problems as they age, including increased prevalence of obesity, poor physical fitness, co-occurring mental health disorders, osteoporosis, thyroid disorders, heart disease, sensory impairments, and early onset dementia (Coppus, 2013). Further, they are at increased risk for these problems being undiagnosed and untreated attributable primarily to lower health-seeking behavior and systemic barriers that impede timely access to providers and treatment (Haveman, 2004; Heller, Janicki, Marks, Hammel, & Factor, 2008). The intersection of these barriers with increasingly complex health problems is most pronounced during the last years of life; 70% of service providers report significant challenges providing the staffing, equipment, and services necessary for adequate end-of-life care to adults with IDD (Botsford & King, 2005; Institute of Medicine, 2014).
Drawn from a literature review of keywords related to aging and IDD, this article will establish a timeline that outlines how, in under 25 years, aging for this population went from a non-issue to a “potential time-bomb” (Tuffrey-Wijne, Hogg, & Curfs, 2007, p. 339). This dramatic shift will be explained through the application of a constructionist perspective of social problems. The constructivist perspective is derived primarily from the works of sociologists, Herbert Blumer and later Malcolm Spector and John Kitsuse (1973) who challenged prior convention that social problems arose from “objective conditions” (p. 145). A central tenet of the constructionist perspective is that all problems are socially constructed and thereby subjective (Schneider, 1985). A social problem is, therefore, one that is identified and studied through the lens of those who have experienced it and/or identified it as problematic (Schneider, 1985). These individuals are often referred to as “claimsmakers,” and they can include any one person (e.g., an individual with IDD or a family caregiver) or a group of people (e.g., a community service agency or self-advocacy group; Best & Harris, 2013). From a constructionist perspective, claimmakers must: (1) identify a particular situation or set of circumstances, (2) regard that situation as problematic in some way, and (3) alert others to this issue (Best & Harris, 2013). The application of this perspective will elucidate the trajectory of recognition and validation of the widespread challenges associated with the aging of adults with IDD; further, it will illuminate why much remains to be done to address this most pressing and potentially devastating healthcare issue.
The “Hidden” Problem: The Early-1990s and Prior
Prior to the 1990s, aging and end-of-life care for this population was not regarded as a social problem primarily because individuals with IDD were being supported within institutional settings that were relatively hidden from public view and were often dying before they reached old age (Doka & Lavin, 2003). (The term “hidden” to describe the population of older adults with IDD was first utilized by Doka and Lavin in their 2003 publication, “The Paradox of Ageing with Developmental Disabilities: Increasing Needs, Declining Resources.”)
Presenting his findings before the United States Senate Special Committee on Aging (Can We Rest in Peace? 1998), David Braddock, Professor and Head of the University of Illinois at Chicago's Department of Disability and Human Development, delineated the shift that occurred in the lifespan of individuals with IDD during the 20th century. In the 1920s, the average age of death for someone with Down syndrome was 9 years old. By the 1960s, it increased to 30.5 years old and rose further to 55.8 years old by 1993. More broadly, the mean age of death for all individuals with IDD rose from 18.5 years old in the 1930s to 66.2 years by 1993 (Braddock, 1999). By the early 1990s, most adults with IDD had a life expectancy very similar to the general population, which was attributed broadly to improvements in healthcare (Doka & Lavin, 2003; Heller, 2008). Deaths were no longer resulting directly from the disability; rather, the causes of death were similar to the general population and resulting from prolonged illnesses (such as respiratory disease, cardiovascular disease, and cancer; Coppus, 2013; Tuffrey-Wijne et al., 2007).
Up until the 1970s, over 85% of individuals with IDD lived in institutional or congregate care settings (Can We Rest in Peace? 1998). In the 1980s, there was a paradigm shift in public policy driven primarily by legislation and judicial decisions; whereby, services for people with IDD became increasingly individualized and community based (Botsford, 2000). Although the significance of this shift on quality of life indicators for individuals with IDD cannot be overstated, the effect it had on public awareness of the implications of aging for this population were minute, at best (Braddock, 1999; Heller, 2008). Although individuals had previously been aging in institutional settings and were now primarily aging at home with family caregivers, in both settings they remained “hidden” from much of the larger public and many traditional systems of healthcare (Doka & Lavin, 2003, p. 135). In these hidden settings, individuals with IDD were routinely excluded from healthcare decision making and end-of-life rituals (Botsford, 2000). Dating back to as early as the 1800s and continuing through this time period, aging individuals with IDD were subjected to abuses by the health care system, including withholding of life-sustaining treatment and euthanasia (Freedman, 1998).
Research related to the intersection of aging and disability can be found as early as the 1970s (Salvador-Carulla, Putnam, Bigby, & Heller, 2012). However, the amount of research available from these early publications through the early 1990s is best described by Salvador-Carulla et al. (2012) as “scarce” (p. 1). Tuffrey-Wijne et al. (2007) found only four papers prior to 1995 that focused specifically on the implications of end-of-life and dying for individuals with IDD. Further, the research tended to be highly specialized and rarely presented findings that had the capacity for interdisciplinary application (Salvador-Carulla et al., 2012).
A “Powerful Synergy”: The Mid-1990s to 2000
Forum transcripts from the United States Senate Special Committee on Aging (Can We Rest in Peace? 1998) highlight the precipice of another social problem identified by claimsmakers (i.e., aging caregivers and community service agencies), which almost inadvertently brought the issue of aging to the fore. The deinstitutionalization movement of the 1980s resulted in approximately 60% of the total population of individuals with IDD living with family caregivers. As Braddock stated at the Forum (Can We Rest in Peace? 1998):
What has been happening is that families have been the informal backbone of our “service delivery system” all along and we are only now coming to recognize it, and we are coming to recognize it, unfortunately, because of the tremendous pressures that are being applied to these families. (pp. 36-37)
Braddock went on at the Forum (1998) to implore the Senate toward policy changes by discussing what he describes as the “powerful synergy” of the increased lifespan of individuals with IDD and the overall aging of the society (p. 37). (The term “powerful synergy” was first used by Dr. David Braddock during the Special Committee on Aging Forum before the United States Senate to describe the double jeopardy experienced by caregivers confronting their own aging and the aging of their adult children with disabilities.) These two factors resulted in aging caregivers who required additional assistance and respite, individuals with IDD with increasingly complex support needs, and some catastrophic emergency incidents where caregivers unexpectedly died and their adult children languished until identified and temporarily placed (Braddock, 1999; Can We Rest in Peace? 1998).
As caregiving parents and their adult children aged, they increasingly sought out support; and waiting lists for services grew rapidly. The size of these waiting lists and the outcry from the IDD community resulted in legislative investigations and funded interventions, including treating the problem through the expansion of community-based residential services (although rarely at a rate equal to population growth; Lakin, 1998). In essence, waiting lists were the symptoms but aging was the cause; and it was this manifestation of the problem that ultimately brought it to the attention of policy makers and the research community (Braddock, 1999; Lakin, 1998).
The “Challenging Paradox”: 2000-2013
The challenge, however, with the manner in which aging came to light is that policy makers treated the symptom of the problem by creating additional services and allocating more funding to community service agencies with the sole intention of reducing waiting lists but not to address the underlying training and educational needs of caregivers supporting aging, terminally ill, and dying adults with IDD (Botsford, 2000; Braddock, 1999; Lakin, 1998). In 2003, Doka and Lavin highlighted the paradox for the field:
As persons with developmental disabilities age, they are likely to experience cognitive and physical deficits that increase their need for services and support. Yet their family-based support networks (who are also aging) may be less available and social services may be ill suited to assist. [This] may call into question not only the policies and programs designed to serve this emergent population, but also the very ways we educate and train professionals working in the fields of gerontology and developmental disabilities. (p. 135)
(Also in their 2003 publication, Doka and Lavin identified the “challenging paradox” experienced by individuals with IDD as they age, including increasing need but declining formal and informal systems of support.)
Although waiting lists certainly brought attention to the fact that people with IDD were living longer, there continued to be little attention paid to the implication of aging on the lives of individuals with IDD and the provision of support services until after the turn of the 21st century when there was a noticeable increase in literature on the subject (Tuffrey-Wijne et al., 2007). As time progressed, policy makers and advocates slowly began to address the broader implications of aging and IDD (Doka & Lavin, 2003; Tuffrey-Wijne et al., 2007). These initiatives were driven by the research community (particularly specialists from the IDD field) who held conferences and published papers to highlight the micro-mezzo-macro implications of aging for this population (Heller, 2008; Salvador-Carulla et al., 2012; Tuffrey-Wijne et al., 2007).
One of the first indications that widespread attention was being paid by the research community to this emergent population was in 2007; the symposium on State of the Science on Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living was held to examine current knowledge and establish an agenda for future research (Heller, 2008). The event—which was sponsored by the Rehabilitation Research and Training Center on Aging and Developmental Disabilities in collaboration with the American Association on Intellectual and Developmental Disabilities, the National Institute on Disability and Rehabilitation Research, Agency for Healthcare Research and Quality, Center for Disease Control and Prevention, and Easter Seals, among others—evaluated four tracks that had implications for aging and IDD, including neurodevelopment conditions, health care, caregiving, and environmental barriers/community living supports (Heller et. al., 2008).
Following this symposium, there has continued to be a notable uptick in the number of professional events that seek to bring together researchers and professionals from the fields of IDD and gerontology. The Toronto Declaration was published in 2011 as an outgrowth of the Growing Older With a Disability Conference and called for integrative and interdisciplinary research with tangible practice outcomes (Salvador-Carulla et al., 2012). The American Association on Intellectual and Developmental Disabilities published End-of-Life Care for Children and Adults With Intellectual and Developmental Disabilities in 2010 (Friedman, 2010) and then later released a position statement, Caring at the End of Life, in 2012 outlining principles, policy recommendations, and best practices for the field. Additionally, conferences seeking to bring together researchers and professionals from the fields of IDD and gerontology are occurring almost annually.
The “Potential Time-Bomb”: Present Day
There has been a steady increase in both the quantity and quality of scientific knowledge being generated around aging and IDD since the turn of the 21st century, which has resulted in a more comprehensive understanding of prevalence and compounding variables associated with the problem (Heller, 2008; Tuffrey-Wijne et al, 2007). However, at present day, the IDD field is only beginning to engage the broader healthcare community and society to recognize the magnitude of the problem and take action to remediate it. And this engagement is coming at a time when society is grappling with how best to provide sustainable, equitable, and ethical long-term and end-of-life care for the general population (Institute of Medicine, 2014).
As early as 2007, Tuffrey-Wijne et al., foresaw present-day and made the analogy of a “potential time-bomb” anticipating the convergence of a growing population of older adults with IDD and an ill-prepared network of service providers (p. 339). (In the 2007 article, “End-of-Life and Palliative Care for People with Intellectual Disabilities Who Have Cancer or Other Life-Limiting Illness: A Review of the Literature and Available Resources,” Tuffrey-Wijne, Hogg, and Curfs first identify the exponential growth of older adults with IDD and an ill-prepared service system as a “potential time-bomb.”) Existing in professional silos, palliative care providers are still not sufficiently educated on issues related to IDD; and residential care providers continue to self-report that they do not feel adequately trained in managing aging and end-of-life care (SalvadorCarulla et al, 2012; Volker, Divin-Cosgrove, & Harrison, 2013; Weis, Stancliffe, Dew, Balandin, & Howarth, 2014). Some agencies and states have adopted guidelines and supports around the topic of aging and IDD; however, these resources are not universally available thus resulting in piece-meal application, at best (McGinley, 2015).
Today, various tools have been developed to assist families and service providers to ascertain and then develop person-centered supports for older adults with IDD, such as AAIDD's publication People Planning Ahead: A Guide to Communicating Healthcare and End-of-Life Wishes (Kingsbury, 2009) or the New York State Office of People With Developmental Disabilities' Aging Information Corner (2013). However, they have not been empirically validated nor evaluated for applicability beyond the demographic region and subset of the population for which they were developed thus further contributing to regional variations and resource silos.
Most notably at present, individuals with IDD have not been well represented in discussions around aging and are all but absent from research pertaining to end-of-life care. In a field currently being driven by the self-advocacy movement, this suggests a failure to engage the most critical claimsmakers (Savage, Moro, Boyden, Brown, & Kavanaugh, 2015). Although this type of research does pose methodological challenges, studies by Tuffrey-Wijne (2013) and Savage et al. (2015) suggest that interventions and data collection designed solely for use with individuals with IDD around topics as sensitive as end-of-life are not only feasible but also provide a rich source of previously untapped information. The implications of this “time-bomb” are significant for the individual with IDD as they enter into the most profound stage of life, for their formal and informal caregivers who must mitigate the challenges associated with their increasingly complex care needs, and for an already overextended healthcare system that must mediate the murky terrain where validated standards and best practices have not yet proliferated.
A historical review of the unprecedented influx of older adults with IDD residing in the United States through the lens of a constructionist perspective illuminates the challenges faced by individuals with IDD, their formal and information caregivers, and traditional systems of healthcare as the population ages with chronic conditions. It also gives perspective to why researchers are only beginning to ruminate on the complexity of these challenges and refine methodologies to ensure new interventions align with broader best practices. In an effort toward dismantling the “time-bomb,” it is hoped that this historical review will identify for the research community, policy makers, and practitioners future directions toward achieving sustainable healthcare for individuals with IDD as they age. It is not too late but urgency and action are imperative.
This author gratefully acknowledges the support of Berg Miller and Asli Yalim.