disruptor: a person or thing that prevents something, especially a system, process, or event, from continuing as usual or as expected
This word has come to mind often in the past thirteen years. Choosing to expand our family back in 2005 didn’t include the word disruptor. It didn’t include disability, depression or discouragement.
With the arrival of Rachel in 2006, our lives were disrupted. Our dreams were challenged, and yes, we had to include disability, depression and discouragement.
But there was also love. A persistent and stubborn faith that God remains present. There was community. And there was determination to find a way through and with these challenges.
All of this was revisited with the arrival of Janneke in 2009, and now we are approaching her 10th birthday next month.
The news about Ontario’s Autism Program this week brought the word disruptor to mind again.
Many families and public service providers were caught off guard with the seismic changes to delivery: The very limited funding for often expensive-but-necessary therapy/services for autism will be allocated to families according to family income -and not according to the needs of the child. This money, referred to as a Childhood Budget, is to be used for private services, forcing public service providers to reconsider their way of supporting families.
It would seem disability (visible and invisible) remains a social assistance issue - and not a health issue.
Though funding can purchase a service for a short time, it cannot easily purchase a system of support for a family who will be caring for their child(ren) for a lifetime.
I can only speak for myself, one who has chosen to love and care for my kids who live with disability. I know I am privileged to have a community of support, and yet certain questions remain:
Who is going to help us take care of our kids?
How does our provincial culture support life - and a good one, from beginning to end?
Who is responsible for caring for the vulnerable?
Who helps children and families who live with disability thrive?
Who supports our children once they grow into adults?
These are the questions that sit with me today.