Not again! The news from St Jude Quebec is distressing. Two middle aged brothers found dead in their family home. The older brother, Jean-Guy died first. He took care of his younger brother Richard after their mother died a few years ago. Richard had the disability and first reports suggest he starved to death several days after his brother died.
Dear reader you likely don't pay as close attention to such news as Vickie and I do. Twenty-one years ago we, along with other parents who have sons and daughters with disabilities, created PLAN to prevent such catastrophes. Yet they continue to happen. This time in Quebec. Similar circumstance drew media attention recently in England. And there have been tragedies like this in the rest of Canada too.
These are entirely preventable. PLAN's approach has been proven in British Columbia and in at least 40 locations around the world that we know of. Unfortunately, it is not yet part of the funded structure of care for people with disabilities and their ageing parents.
Here is what we would do to prevent such tragedies.
First, don't cast blame. Don't scapegoat government, social services, disability organizations, the community, the neighbours, the mother, the extended family, the press. Don't, for example, leap to the conclusion that government simply has to spend more money on programs. Blame invites retrenchment. It reinforces conservative decisions. It inhibits innovative thinking and creative action. And the latter is exactly what is needed to prevent future catastrophes.
Second, I invite you to rethink everything you know about disability. These deaths reinforce our belief that loneliness and isolation is the biggest handicap faced by people with disabilities. And their families. A good life for people with disabilities, in fact for all of us, starts with friends and family. Relationships also keep us safe and provide the security to make our contributions and experience meaning. We also get sick less often, heal more quickly, use services more efficiently and less frequently. Programs and services cannot substitute for friendship and natural caring. Most professionals admit their limitations in this regard. This is PLAN's specialty - we can develop a social network for anyone.Third, change our institutional response. For the first time in history we are witnessing a generation of people with disabilities outlive their parents. Our institutions, systems and service providers have not caught up with this demographic tsunami. Here are two things our governments, institutions and non profits could do:
- Support not supplant the care provided by family. Apparently the older brother was afraid to ask for help for fear the authorities would judge him unfit to care for his brother. In other circumstances elderly parents are too proud to ask for help or had previous experiences of social service interference. Family friendly policy and practice strengthens the natural resilience, the problem solving capacity of families. Its goal is the healthy functioning of the family.
- Ensure social networks are nurtured or created for every person with a disability. Reduce and eliminate the isolation and loneliness of all persons with disabilities. The average yearly costs of programs are in the tens of thousands and sometimes hundreds of thousands of dollars. The average yearly costs of a social network is in the neighbourhood of $5,000. Tyze networks are considerably less expensive. For example, Tyze networks could be offered to all people with disabilities and their families in your organization, community, province, country. Several organizations across Canada already are.
From the recesses of my Catholic background I recall St. Jude being the patron saint of hopeless causes. Perhaps it is not a coincidence this latest tragedy happened in St. Jude. May the community of St Jude make a stand. May they start a movement to end the isolation and loneliness of everyone in our communities. May St. Jude, Quebec become the first municipality to erect a sign: Welcome to St. Jude. Never again, will strangers live here.
NOTE: PLAN/PLAN Institute offer a range of resources for creating 'circles of friends' and social networks. These include our most popular on-line course, Weaving The Ties That Bind, which has trained people from all over the world.