McMartin: ‘After we’ve gone, then what?’

A great headline to another great column from Pete McMartin in the Vancouver Sun today, because that's the one thought that's never far from mind for any of us!

"Clay Knowlton is 64. His wife, Susan, is 61. Their daughter, Erin, is 32. Erin, who is autistic, is classified as low-functioning. Time, for the Knowltons, is an enemy.

"Clay and Susan have just so many years left to make sure their daughter will be taken care of after their deaths. She'll need housing. She'll need supervision. The Knowltons need the assurance that when they're dead, their daughter will be safe.

"The Knowltons are not alone. There are thousands of families in B.C. who feel the same anxiety, and who worry over the same question: After we're gone, then what?

"The Knowltons cannot entertain the idea of Erin living on her own. Nor do they like the idea of her going into the government's home-sharing program -essentially, foster care for young adults with disabilities. The quality of that care, they felt, could not be assured." Read more

This story highlights the unintended but predictable failures of the CLBC experiment, particularly the key underlying commitment to "personalised" supports. When that philosophy butts up against the reality of underfunding, you're left with endless waitlists or forced moves to lower-cost adult foster care with inadequate oversight. The result is ever more desperate families turning to solutions like this - to the horror of CLBC's architects who see a full circle back to institutionalization.

The experts warned BC to stabilize budgets before creating CLBC & we "ranted" about that too -- ad nauseum, but sadly to no avail, so here we are.

It's also important to remember, before too much time passes, that we can and did do better. The tireless families who pioneered deinstitutionalization (like North Van's Anita Dadson) created an entire system of community living from scratch: non-profits, group homes, day programs, etc and made BC a world leader. They showed it could be done, and British Columbians paid the costs. While far from perfect, there were real choices, a province-wide system of residential options that worked, and some doable fixes that could have addressed the worst gaps.

But this is as much a failure of policy and good governance as it is of funding. For example, the Province/BC Housing does have the money needed for projects like this - as illustrated by the $20 million that BC Housing is offering to help construct a "state-of-the-art" building to house a new provincial autism centre, despite no needs assessment ever having been undertaken to identify this as a "need" -- particularly when stacked up against very real needs such as the lack of adult residential options, for example. Similarly, providing the necessary choices and safeguards around options like home-share to restore families' confidence is to some extent a policy issue, not just a resourcing question - so these things are not unsolveable!

We commend the families' initiative in looking at out-of-the-box solutions to mitigate the looming crises. Many of us find ourselves similarly confronted, simply having no other choice. But let's also not forget that many less fortunate families can't even dream of having the financial means to pursue options like this. And with severe new cuts to day programs and respite forcing more parents to give up working and become permanent caregivers (plus ever-rising housing costs), the ability to even consider the kind of investment needed will increasingly be out of reach for many.

So after they're gone, then what?

Is the same society that pioneered community living really unwilling to pay the costs? If that's indeed the case, do we need to consider income testing relatives so that those who really do have no other choice can also go with some peace of mind? Because for every family like the ones in this story who at least still have some hope, there is another family whose time and options and hope have all already run out.

What do you think?