OUT OF FOCUS: DEVELOPING A PICTURE OF AGEING PEOPLE WITH DEVELOPMENTAL DISABILITIES

by Kathleen K. Biersdorff, Ph.D., Director of Research, VRRI

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With all that’s been written in recent years about ageing with a developmental disability, you’d think we’d have a pretty good picture of the service needs of this group. The information on medical and physical aspects of ageing alone is overwhelmingly detailed. Yet somehow this picture remains out of focus for many of us. This Rehabilitation Review uses a wide-angle lens to give us a bigger picture than we get from an analysis of just medical issues. We’ll look at some basic concepts, and use the polarising filters of historical context and an alternate point of view of ageing to enhance the picture that is developing.

The ‘ages’ of ageing

Today’s seniors are healthy, active community participants with a focus on social and leisure pursuits. Seniors’ services organise activities around a wide variety of interests from gardening to genealogy, to the arts, to wellness. In the ageing literature, this is called the ‘third age’ and it can last many years after retirement (Janicki 1994). In the ‘fourth age’, by contrast, people experience major declines in health and become more frail. Social and leisure activities are curtailed by medical and mobility issues. Although some people may move from their family home (sometimes in a retirement community or assisted living) to a nursing home, the current trend is to promote ‘ageing in place’. This means providing services on an outreach basis that are commonly available in care facilities, such as meals and nursing care.

Ageing with a developmental disability

The pattern for people with developmental disabilities is the same, but with a few twists. The effects of ageing on physical health are the same as for non-disabled people, but they often appear at an earlier age, perhaps as a result of secondary conditions associated with Down Syndrome, medication side effects or undetected sensory and medical problems (Connolly 1998). In an intriguing study which compared ageing people with physical disabilities to those with cognitive disabilities (Olsen, Hutchings and Ehrenkrantz 1997), seniors aged 60-86 were asked to rate their health status now, compared with twenty years earlier. While those with physical disabilities reported feeling worse, those with cognitive disabilities reported feeling the same or a bit better now. The reasons given for this improved health status were greater independence and improved medical or emotional state. In fact, hospitalisations during the past five years were the same for both groups, suggesting a roughly equivalent health status.

Historical context as filter

If the reality of health status is a decline in functioning, why is the perception of ageing among people with cognitive disabilities one of improved functioning? The answer may lie in the history of services to this group. Many of these seniors grew up in institutional settings. Even twenty years ago, day and residential services were fairly structured and opportunities for individual choice were limited. Now, a combination of individualised supports and being of ‘retirement age’ have opened up options with a social and leisure focus. Medical advances have increased the lifespan and quality of life of people with developmental disabilities. While medical problems may still be overlooked, once discovered, they are more likely to be correctable than before.

Also, historically speaking, when the rest of the population was entering the workforce, many people with developmental disabilities were entering sheltered workshops. By the time service philosophies favoured community employment, they were already becoming ‘third agers’. As a result, many 40-50-year-olds with developmental disabilities want to work but do not have the stamina to carry out a full-time job. Early ageing puts people with developmental disabilities out of sync with society’s timetable for life events. They may become less productive and task-oriented. and more socially-oriented, at an age when service funding is still employment-focused.

This snapshot of ageing with a developmental disability is grounded in the present. In future, seniors with disabilities may not experience the same conflict, because most will have entered the workforce in their 20s instead of their 40s.

Point of view in composing the picture

It is hard to plan services for the future when 32% of its users are unknown to the system. About 80% of adults with developmental disabilities ages live with their family. About 40% of these have no ties to the disability system (Heller 1998). The first contact with these individuals is usually precipitated by a family crisis, such as parental death or hospitalisation. Often the family contacts the agencies serving the ageing parents rather than the disability system. So why don’t we hear about these people sooner and more directly?

The answer seems to be differing points of view between professionals and families, both now and in the past. Families have a long history with professionals who claim to ‘know what’s best’ for their son or daughter. And what’s best has changed over the years from institutionalisation to sheltered workshops and group homes to community employment and independent living. All of these ‘best practices’ have involved removing the son or daughter with a disability from the family context. In these turf wars between parents and professionals, some families “just said no” (McCallion and Janicki 1997).

As parents and their offspring with developmental disability get older, another family-professional difference in point of view comes into play. This difference revolves around beliefs about ageing and includes generic services to ageing individuals. Professionals often view ageing people as service recipients, ‘set in their ways’ and in decline (Walker and Walker 1998). Ageing people (particularly third agers) see themselves as having something to give, interested in new experiences, ‘not dead yet’. Parents remain committed to their caregiving role and see the relationship as mutually beneficial. As their own needs for housekeeping help, or emotional and physical support, increase with age, it is often the child with the disability who takes on more of the caregiver role.

Developing the picture together

Photographers use a polarising filter to remove reflections and make the colours of the image richer. In the same way, we need to remove the distortions caused by stereotyping from our image of ageing people with developmental disabilities. As third agers will tell you, retirement is not about taking naps and watching soap operas in the afternoon. Retirement planning and services must be adequately funded, regardless of the chronological age of the individual. Retirement and semi-retirement supports should enrich people’s lives with new experiences, enjoyable activities and the companionship of others who appreciate them. The cost of these supports should be assumed to equal those of an employment programme. Finally, we need to develop closer links with the systems serving seniors. If 32% of people with developmental disabilities are going to enter the service system at an advanced age in a time of family crisis, we need to do our part to facilitate the transition.

Coalition-building between the service systems does not happen automatically. It takes someone–a person or organisation–to assume a leadership role in organising, communicating and maintaining the coalition (Smith et al. 1997). Barriers such as differences in philosophy, priorities and the way services are organised and funded are also a challenge. McCallion and Janicki (1997) propose that these barriers can be addressed through cross-training of service professionals, public policy reformulation to plug service gaps, an impartial third-party brokering, cooperation between the systems, and having seniors’ services take the lead role in organising services to persons with developmental disabilities living with ageing parents.

Whether all or only some of these strategies are essential to success is still unknown because large-scale coalitions (e.g., serving a city or region) are virtually non-existent. Most examples of cooperative action still operate on a small scale or individual basis. And yet, if we have enough snapshots of people with developmental disabilities ageing in place with dignity and delight, we will surely develop a clear picture of the service needs of this group and how to fulfil them.

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