I met an old friend downtown a couple of weeks ago. We ran into each other on the square and sat on a bench to catch up on old news. It was a great opportunity. The air was reasonably clear, and our words weren’t drowned out by the noise of idling buses. We chatted away about family and friends and jobs.
Her eldest had just turned 21. It’s not that long since my youngest turned 28, and I still have a good memory of the celebrations that accompanied that landmark age.
With daughters it seems every birthday is a landmark. Sixteen was a biggie, as was 19, 21, and every other year before and since. Nonetheless, 21 still seems to have a special cachet for boys and girls. It is a transition year, the final gateway on the path to adulthood.
For youth, it’s a step closer to much anticipated independence. For the parent, the fantasy world of empty nests is not just a faraway dream. Or so I thought at the time.
It is not such a joyous occasion for everyone who lives through it. Maybe nine out of every 10 of us, give or take a dozen either way. I’m not sure of the statistics, but there are some among us who don’t view a 21st birthday with much enthusiasm. For them, it ratchets up an already stressful situation.
You see, my friend’s son has cerebral palsy. If you’ve lived a pleasantly sheltered life and haven’t run into this before now, go to the library and look it up. It’s a complicated condition affecting something like one in every 500 people. Mild cases are sometimes not even diagnosed. You’ll know it if you bump into someone with a more serious condition.
Children with CP or other disabilities are not difficult to love, but can be very hard to live with. There are moments when they can be very endearing. There are other times when they can be thoroughly frustrating. As much as they need help, so do their parents. They need help with the financial burden of caring for a disabled child. They need help with the emotional and psychological pressures that build up and batter their minds and bodies. Often, they just need a rest. Time off. A chance to be by themselves and recharge their batteries.
The Ontario Ministry of Community and Social Services has developed some programs to help families with disabled children. The Special Services at Home  program was designed to help keep children with disabilities out of institutions. A great idea.
It paid for assistive devices, respite programs and other necessities. Funding for the program has been steadily reduced over the years. Then  the government announced that as of April of this year this funding would no longer be available beyond the child’s 18th birthday. That’s when they now get bumped onto a different program. It is seriously underfunded and has onerous rules and a long waiting list.
If all this sounds horribly complicated, it’s because it is. See it for yourself by googling “SSAH Coalition.” Then ask yourself if this is what a kid needs for an 18th birthday present. Why should the parents of children with severe disabilities sacrifice their sanity in the cause of reducing government deficits? Where is the fairness in that?
You don’t judge a community by how well it looks after the strong and the powerful. They can manage quite well by themselves. The accurate yardstick is how we treat the weakest and most vulnerable of our citizens. By this measure we are not doing well at all.