Stranded: A Crisis Years in the Making

Amanda Telford’s decision to leave her autistic son at a provincial government office in Ottawa this week placed a human face on a crisis that has been decades in the making. And if any of us think that this is a rare situation, or something unknown to policy makers, think again.

When I started my career over 25 years ago I worked in developmental services in northern Ontario, even then, family’s like the Telford’s were faced with the same horrific circumstances. When your child is born with a disability, you are forced into the role of advocate, nurse, case worker and relentless door knocker.  You struggle, you fight to keep your son or daughter at home with you, you fight to ensure that despite their limitations, you can find their potential. You want what we all want for our kids to be happy, reach their potential, whatever it may be.

 No one would claim that they are perfect, but there is a broad array of services available for children living with disabilities when they are kids, supports at school, in the health care system and through developmental services.

Everything changes when your child turns 18, no longer school aged, now an “adult”, services are available but they are few and far between. Families get referrals and can spend years on a waiting list, moving from crisis to crisis. Services for adults with developmental disabilities are stretched to the limit.

If your child is living with another health issue along with the developmental disability such as mental illness, 3 to 4 times more likely than the general population, services are even more limited.

In 1987, the Ontario government committed to closing its institutions for people who have and intellectual disability.   The last three institutions in Ontario were closed in March 2009. This was the right direction, as is often the case, we embrace the right thing and underestimate the costs and as a result only get part way there. Crisis by design, those working in the system saw this coming.

Families should not have to abandon their vulnerable children to get the supports they need. Because there is not enough support available people are being placed inappropriately and at risk.  We all pay whether it’s unnecessary costs associated with frequent emergency department visits, or brushes with the criminal justice system.

This was not what the spirit deinstitutionalization was about. We are denying our fellow citizens the rights we all enjoy and their story could have easily been ours.