Disability and the two wise men

“Those we most often exclude from the normal life of society, people with disabilities, have profound lessons to teach us.”  Jean Vanier, Becoming Human

There can be an overlap between disability and mental health when the years of dealing with mental, physical or learning challenges take a toll on a child. Nothing prepares you for your child's first crisis. Like glass shattering around you, you find out everything you've taken for granted is as fragile as fine crystal. 

Your daughter somehow finds a bottle of sleeping pills and is now unresponsive. You find the strength to drive her to the hospital where she regains consciousness but you are told that she won't be assessed.  After a number of attempts with similar hospital outcomes, you finally realize that for your child's safety, you will have to call the police. And you think there can be nothing so heart-breaking as watching the police take away your child.

Nothing, that is, until you talk to Amanda Telford.  Some of you may remember Amanda from the headlines last spring when for her son's safety, she left 20-year-old Philippe in the care of a social service agency. Philippe has developmental delays and autism.  He has Tourette syndrome and because of this, he flicks his wrists in a manner that others find off-putting.  He is a runner and has run into traffic.  Philippe also has adult-onset diabetes that require daily insulin injections and because of his complex needs, the Telfords had trouble finding respite care for Philippe.  For years, they took turns sleeping and working in shifts, never leaving Philippe unattended.

The Telfords played the game by all the rules to find care for Philippe.  They contacted appropriate social service agencies to simply request a little respite care.  They were then promised meetings with agencies that didn't materialize.  They contacted their provincial and federal representatives and were told to wait their turn ... on a waiting list with 568 other families at that time.  A few years ago, there were two hundred adults waiting for residential services in Eastern Ontario.  Now there are now 931. Two years ago, 13 adults were placed in residential care.  Last year, there were 3 placements!  When Amanda's health started to fail, she couldn't wait any longer.

We are often told the aging population will create a crisis for medical and social service agencies and a financial crisis for the next generation.  But there is some truth to an editorial in the December 2012 edition of Zoomer Canada where Moses Znaimer says that the Boomer generation is the one holding it together financially for the Millennials both in terms of continuing to house them well into their twenties while holding vast amounts of equity in their homes that many Millennials will eventually inherit.  Many Boomers who do survive to be 90 or 100 will have that home equity to see them through and even if junior doesn't inherit the house, mom or dad Boomer are less likely to be a drain on the public purse than prognosticators of the "grey tsunami" would have us believe.

On the other hand, there are great numbers of children with autism and other special needs who are coming of age.  What will become of this tidal wave of children with exceptional needs as they mature?  To my mind, this is the real crisis.

As parents of exceptional children age, we worry about who will be there to care and support our children when we no longer can.  We go to great lengths to set up wills with Henson Trusts, the only vehicle available to ensure that our children's needs will be met. We scrape together whatever we can deposit in Registered Disability Savings Plans, the RRSP equivalent for people with special needs.  And these will just provide basics for our children.

Governments closed institutions in Canada for humane reasons or so we were told.  But it is definitely not humane if the only alternative to institutional care is to live in an elderly parent's home or on the street. Canadian governments haven't funded nearly enough group home spaces to begin to meet the growing need. And as thousands wait in line for a residential space, Amanda is asked the heart-wrenching question once again, "Will you take your son home now?"  And somehow every month or so, she has to find the strength to advocate for her son while continuing to say no.  What will happen to Philippe when Amanda is no longer there to watch out for him?  What will happen to the thousands of Philippes?

It's interesting to note how different religious leaders often reach similar conclusions. Jean Vanier is a deeply religious Catholic and Mahatma Ghandi was a devout Hindu.  I'll finish with a last quote from Ghandi:

"A nation's greatness is measured by how it treats its weakest members."

Don't look at the elderly as the threat to civil society when the real danger comes from shards of glass beneath our feet.


The views expressed in this post are personal opinions only.