Hot! Crushing the caregivers

NationalPost.com – Full Comment
May 5, 2014.   Laura Rosen Cohen

Last week, a British Columbia mother murdered her severely autistic teenaged son and killed herself because she could no longer take care of him. In Britain, a mother killed her three severely disabled children and faces three murder charges. Last month, an exhausted Ottawa area couple dropped off their severely disabled autistic adult son at a government office, only later to be charged with abandonment.

News stories pointed to a “caregiver” crisis once again “resurging”.

For parents of disabled children, there is no “resurgence,” just a steady, never-ending road of struggle and exhaustion punctuated by acute medial crises. There are moments of joy and the constant reality and grief that our nests will never fully be empty for traditionally good reasons. There is also indifference to our biggest fear: Who will love and care for our children when we are gone?

These avoidable tragedies occur because care of the disabled is neither well understood nor highly valued even in a civilized country such as Canada. There is a veneer of civility, and some “integration,” but mostly, families with disabled relatives are on their own to navigate the system.

There are no easy fixes, but at the very least, what is needed is recognition and acceptance of the fact that no one person, or even two parents are capable of taking care of a severely disabled person 24 hours a day, every day and night of the week until someone in the equation (parent or child) dies. Yet, this is the reality, and generally what is expected and required of parents by policy design or omission.

If we continue to ignore this fact, there will be further avoidable tragedies.

In Canada, as in other civilized countries, the sick are hospitalized, with nurses and doctors assigned to their care 24 hours a day. We don’t expect individuals with debilitating medical problems (that are of no fault of their own, or even of their own doing) to take care of themselves. Why should the care of severely physically and/or mentally disabled individuals be any different?

We would never say “It’s your kid, do the appendectomy at home.” Or “Sorry, do the heart transplant at home,” or “Your parents will have to deal with that gunshot wound.” But this is the system of care we have in place for the severely disabled. Why?

I am the parent of a developmentally disabled child, with several chronic, incurable, yet “manageable” medical conditions. Our children’s conditions are always manageable to those who never have to manage them, or manage their lives.

Disabled children in Canada generally are able to access some good services and programming — but this is usually dependent on where they live and how vocal, connected and relentless their parents are in their advocacy efforts. But somehow either by design or by omission, disabled “kids” are screwed when they hit age 21 and “age out” of the pediatric system.

Canada needs more dignified supported housing and respite care for disabled individuals

When our disabled children become disabled adults, most of us are forced not merely to manage, but to reinvent an entirely new life and structure for them due to a lack of support and choice within our communities.

Many people are disinterested in the plight of the disabled due to fear or sometimes loathing. They are glad it didn’t happen to them, or to their own loved ones. I understand that and can’t force anyone to love my child, or his disability.

Whether for our own loved ones, or simply fellow citizens, Canada needs more dignified supported housing and respite care for disabled individuals. Supported housing for the disabled could, and should, be opened up to the private sector to create competition and therefore, better choice. Economic incentives for developers can be created. The status quo is untenable. Governments have had a monopoly on this for far too long, and look where it has brought us.

We need to do better. To avoid tragedy, disabled individuals and their families need political support. They deserve meaningful, dignified lives, not isolated lives in front of a TV all day. There are organizations like Jean Vanier’s L’Arche that fulfill this mission, but many more are needed.

Though I have never have reached the depths of despair and hopelessness felt by parents who harm or abandon their children, I have been witness to it, and would never wish that heartache on anyone. A dignified, meaningful, pain-free, safe existence for the disabled is the absolute minimum that should be the standard in a civilized country like Canada. Because no one can walk this path alone, and in this country, nobody should ever have to.

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