In the high-tech, whiz-bang world of modern medicine, illnesses are enemies that are vanquished under an assault of chemistry and surgery. Sometimes. Where things fall apart is in the grey zone of chronic illnesses—those physically and emotionally grinding and frequently debilitating health problems that don’t get better, and often get worse.
Autism, which stems from aberrations in early brain development, is one such chronic illness. The actual cause of the disease is not completely known—environmental, genetic factors likely play a role. What is known is at least 10% of the population suffers from some form of the disease. In the United States, half a million children with autism will become adults in the next decade. (The numbers in Canada will be proportional, about 50,000.) These people will never “outgrow” their problem or be “cured” of it. Instead, the lucky ones will live in group homes or residential institutions. Some may live with parents and then with siblings or other relatives. The unlucky ones will be homeless and socially isolated and simply fall between the cracks and quietly disappear.
Many pundits have predicted that we are on a collision course between a set of cohorts that need help—the disabled and aging baby boomers—and the workers who are funding social services through payroll taxes. This is something the Telfords of Ottawa know about firsthand. Their 19-year old son Phillip is severely autistic. In addition to functioning at the level of a 2-year old, he also has Tourette’s Syndrome and is diabetic. Unfortunately for the Telfords, once they’re past 18 years of age, autistic children are no longer entitled to government services.
After waiting for a year to find him a place in a group home, the Telfords have had it. They’re fried. On Tuesday his mother dropped him off at the Ottawa office of Developmental Services Ontario, who are now on a frantic search to find Phillip temporary shelter.
Society as a whole—government, community and the private sector—must confront the issue of how to provide shelter and care for the growing population of chronically disabled. With autistic children, some are able to work part-time and can offset the cost of their home care, while others require 24-hour attention. There are simply not enough facilities and funds to accommodate current and future needs. Phillip’s mother is a social worker. If she is unable to navigate the system and find a suitable place for her son, what chance do ordinary people, who are apt to get hog-tied by bureaucratic red tape, have? One woman with an autistic teenage son in Thornhill, Ontario was advised by provincial officials to drop him off at a men’s homeless shelter.
Autistic kids grow up to become autistic adults. Along the way, parents burn out and die out and siblings may or may not be able to assume care for their autistic brothers and sisters. It’s time government wakes up and steps up. Phillip Telford may be just one example, but he is just the tip of the iceberg.