One of the most remarkable accomplishments of the last half-century has gone almost unnoticed. Before the 1970s, the average life expectancy of a child born with Down syndrome was less than 10 years. Today, it is close to 60, and still growing.
Some of this achievement is due to a change in public attitudes toward people with disabilities. In days gone by, kids with Down syndrome were either institutionalized or kept out of sight in their parents’ home. In either case, the care they received was often inadequate.
Today, we see these children splashing in the Commonwealth pool, playing soccer in parks and, as they grow up, getting jobs.
Improved medical procedures have played a part. Some Down syndrome children are born with congenital defects that were once fatal. Better surgical techniques and new drug therapies have helped diminish these threats.
But the issue we want to draw attention to here is the immense challenge facing both the parents of children with disabilities, and the community agencies that provide assistance. There are three parts to that challenge.
First, as life expectancy for Down syndrome adults grows longer, an increasing number are outliving their parents. That places pressure on community agencies that become, in effect, the primary caregiver.
Second, over the past decade, the number of children in Canada diagnosed with autism spectrum disorder has doubled. Since the severity of symptoms associated with autism varies widely, not every child born with this disorder requires professional help. But many do. This also has placed additional pressure on community organizations.
Third, despite the best efforts of service agencies, much of the burden continues to rest on parents, many of whom are exhausted by the daily struggle.
The answer might seem obvious: Expand the range of assistance available in the community to meet the growing need. And to some extent, that is happening.
For example, four community agencies, in collaboration with B.C. Housing, want to develop a nine-acre parcel of land next to the Saanich municipal hall.
Called the Nigel Valley project, the plan is to expand existing facilities for clients with developmental disorders, but also to offer residential suites for low-income families.
One of these agencies — the Garth Homer Society — provides assistance to 224 clients with various forms of disability.
The society would like to build 60 to 80 new units of housing, some of which will be available to clients with disabilities, and some of which will be rented on the open market.
But that raises yet another difficulty. Some advocacy groups see projects of this sort as a form of segregation. They believe developmentally disabled adults should be fully integrated into the broader community.
Supporters of the Nigel Valley project argue that’s exactly what they’re doing. By building housing units that will accommodate both clients and regular renters, they are creating an urban-style neighbourhood.
While there are merits on both sides, it does appear that more severely disabled clients will benefit from the kind of supportive environment the Nigel Valley project provides.
Yet the challenges that remain are enormous. More funding is certainly required. And too much of the burden is being placed on aging parents who are at their wits’ end.
Nevertheless, the remarkable extension of life expectancy among Down syndrome children and adults is proof that progress is possible.
Moreover, the moral tenor of a society is measured by how well it takes care of those most in need. There is much work to be done here, and the community has to step forward.
We have brought disabled members of society out of the shadows. Now, we have to ensure that they can live life to the fullest.
