Thursday, March 13, 2008

Disabled kids aren't getting the support they need: report_

I can't imagine anything more challenging than being the parent of a disabled child.
It's not just the effort, the commitment that goes into making sure your child has the best life possible. Not just the exhaustion and expense and emotions and the toll on other relationships.
The parents also know that someday they won't be there. And then what will happen to their children, who can't care for themselves?
We've accepted the idea that this is a shared responsibility. That when parents can't cope, the government will provide help. Therapy and support, perhaps places children can go occasionally weekend a month while their parents have a small break, sometime specialized residential care.
Most of us would want to be there for those families.
But the provincial government isn't doing a good job. It's even ignoring a 2007 B.C. Court of Appeal decision that found the government has been breaking its own law by denying help to those who need it.
Mary Ellen Turpel-Lafond, the Representative for Children and Youth, has just reported on how well we're doing in supporting these children and families.
It's not great news.
Families who decide they need help can't figure out where to go. They face a "complex, fragmented service delivery system." That's a big barrier if you're already spending every waking moment caring for your disabled teen.
It's often not even clear where they should start. The Ministry of Children and Families and Community Living BC, the government's agency delivering services to people with developmental disabilities both have roles, too often poorly defined.
Even if families can find their way to the right office, the problems aren't over. Turpel-Lafond found wait times - or getting needed help at all - are a significant problem.
No one really knows what's going on. Or, as the representative puts it: "There is insufficient public accountability and measurement of child and youth outcomes. At present, with respect to CLBC and MCFD services to children and youth with special needs, it is not possible to decipher who is getting what services, by whom, at what cost and with what outcome. "
And there is the government's shame. It insists that once people turn 19, they are ineligible for help if they score at least 70 on an IQ test. Only five per cent of the population has IQ scores that low.
The policy discounts other problems that might keep them from making their way successfully - fetal alcohol syndrome, autism, ADHD, big psychological problems.
The B.C. Supreme Court and the Court of Appeal have both ruled the policy violates the government's own laws
But Turpel-Lafond says that continues to be the government's policy, despite the court ruling.
Her report includes examples that show the ridiculous destructiveness of the policy. A 17-year-old boy with a range of serious psychological and behaviour problems was removed from his last foster home after he assaulted the family's six-year-old son.
The children and families ministry had nowhere for him, so social workers arranged a placement in a Community Living BC home. There's a lot of support and supervision, so it's expensive - $8,000 a month. But he's doing well.
But he's aging out of care, as the social workers say. And although his IQ tested below 70 in the past, a new assessment put him just over the cut-off.
So, once he turns 19. Community Living BC says he's on his own.
Social worker and forensic services assessments say he won't make it. The young man is a risk to harm himself or others in the community once he turns 19 and the support is withdrawn, they say.
It's wrong and foolish stupid to condemn someone to a costly failure in life to save money - especially the long-term cost is much greater.
Turpel-Lafond has offered a useful guide for improvements. The government should welcome the help.
Footnote: Turpel-Lafond criticized policies that see help cut off for children in government care when they turn 19. "A prudent parent wouldn't send a developmentally impaired 19-year-old to the street and the state shouldn't do that," she said. Children in care should get transitional help until they turn 24. Christensen said the current policy would stand.


Anonymous said...


MCFD/CLBC are desperately trying to hide the chronic underfunding they receive from the BC Liberals - they cannot afford to be open and accountable.

For a truer picture of what is happening on the front lines you need to go where the 'rubber meets the road' - front line workers.

While individual line staff face severe management harassment for speaking out, most staff belong to organizations that can speak freely.

The British Columbia Association of Social Workers is a good place to start.

The BCGEU's Community Social Services Chair James Cavalluzzo, or Social, Information and Health Services Chair Doug Kinna can also speak directly about these troubling issues.

The BC Association for Community Living has a good history of advocating for folks with developmental disabilities - though they seem to strongly resent that paid staff are employed to support the disabled.

Anonymous said...

Another program where the present government simply doesn't admit the funding is too low. Usual answer is how much better they are than the last government followed by dollar numbers. Kids, schools, hospitals, you name it, underfunded.

Olympics, other grand schems, hey there is no limit to the money pile. They make me and a very large number of people sick of their posturing, How anyone can sleep at night after underfunding disabled chilrens programs is beyond me. Unfortunaly they have enough support from others to do exactly what they want to d and it doesn't include most social agencies. Time to boot Gordo and gang out of their cushy jobs DL

Dawn Steele said...

Sorry, I get the idea that the first poster is trying to convey but the opening comment is not only truly offensive but inaccurate.

I've gotten to know an aging gentleman with autism whom I met at DDA's annual Reach for the Stars fall gala (he is, among other things, a terrific dancer).

I've also seen him speak up at a political action meeting. He spoke brilliantly and movingly, making it very clear that despite his challenges he understands exactly what is going on and who is to blame.

I've never asked, but I believe he does vote. So do all his friends, and so do the families of the 60,000 school-age children with special needs, of the 50 - 60,000 underserved adults with developmental disabilities, and the thousands more desperate families of preschoolder who haven't yet gotten used to living with crisis as the status quo.

The voting record of people with disabilities and their families is not the problem here. It is the voting record of the rest of society -- i.e. all those who hold their noses and try hard not to think about the disabled, the homeless, the kids, the poor etc when they vote for a party that they believe will keep their property values and RRSPs looking spiffy.

Anonymous said...

Dawn, I didn't write the first post but I think if you read it again in context you may realize that it is poking fun at an ignorant and short-sighted government attitude, right down to the language it chooses (um, I think that may have been a clue not to take it so seriously). I'm not claiming it is politically correct, however.