Advocacy News

Starting a Discussion: How do we guide change in community living?

The Vancouver Sun has published my letter to the editor responding to Vaughn Palmer’s column on the new Queenswood report . Since they cut out some important parts, I’ve also linked to the original letter below.

This letter and our recent summaries reflect just one of what I’m sure are many perspectives, which continue to evolve as we pick up new pieces and learn valuable insights from others. The point here is that having conversations about these things is critical, both to fully informing ourselves and the broader public. As one email to MOMS put it:

“What is really important for families to understand is that the 
> ground is shifting rapidly and the people who are exerting the 
> most influence over what the future will be for people who have 
> disability related supported needs, are not their families, but 
> those listed in Appendix 2 of the Queenswood Report 
> (Participants in the Review). These are people who are
> comfortably ensconced in their ivory tower and fundamentally do
> not understand the direct lived experience of families.”

These reports, along with government’s 12-point plan, outline another major restructuring: We’re looking at potentially radical changes with lifelong implications for people with developmental disabilities. Depending on whether this time you’re prepared to trust a governemnt that has failed us repeatedly, those changes portend a welcome break, a frightening descent into deeper crisis, or maybe some of both.

We are again at a critical juncture in community living, with 3 roads open before us:

1. We sit back and let the political leaders and bureaucrats do it their way, after another round of perfunctory consultation with families. This is the default route, one that represents another lost opportunity. The Premier and Minister Cadieux have just concluded no less than 3 reviews that primarily entailed bureaucrats consulting each other to establish the direction of change, I’m not confident that this is a good way to start an inclusive and successful process of reform.The Premier’s mandate is to do what she thinks best for the majority of British Columbians in her political base (i.e. contain govt spending) – NOT what’s best for community living. The bureaucrats’ mandate is to please their political masters (contain costs with a minimum of outside noise) and make life easier for themselves. This is not criticism or partisanship – just reality. 

2. We start a bun fight and try to drown each other out by demanding that govt focus inadequate resources on our competing visions and priorities. This is what happened in 2001, after a small group of families led by the polically-connected Doug Walls mapped out “their” vision, consistent with the BC Liberal’s priorities, and then told everyone else to take it or leave it. The public wants to see vulnerable people treated fairly. But public opinion, which is critical to shaping political priorities (regardless of which party is in power), will not be on our side if we can’t send a strong, clear message about what is needed to achieve that.

3. Or we sit down together and try to understand and include the full range of perspectives in an effort to drive change towards a system that works relatively well for everyone. I believe the broader BC public would strongly support us and push the government of the day to do the same, if we can develop a strong, clear message together, as we did in the past year via BC CLAG.

There is an opportunity to do it right this time, but only if we step up and demand it or step out in front and create the sort of open process that is critical to achieving option 3.

MOMS has started the conversation but we are not going to lead what comes out of that. It is up to individual families, self-advocates and other stakeholders to step up and take control together – or just leave it up to the government of the day to lead us, and be satisfied with helping to adjust the details around the edges of whatever they decide.

We have shared some thoughts and sought to highlight some critical pieces, because we realize that most people are not going to read all 3 massive 100+ page doorstopper reports. (Although we’d strongly recommend at least scanning the table of contents and reading sections of particular interest for yourself!). Another problem, as self-advocates have pointed out, is that government didn’t bother to produce “plain language” versions to help adults with developmental disabilities join the discussion. We’ve tried to make the information more accessible via our summaries. But these are just a starting point for discussion. We would like to see more thought-provoking letters to the editor, emails or Web comments highlighting what needs to be done, along with a broader community discussion in forums where we can discuss this face to face, with expert facilitation to guide a productive and respectful dialogue.

  • What are your questions, your thoughts, your fears and what opportunities do you see?
  • How and where do we have the discussion if we want to take back control of our lives and re-establish ourselves as real partners in community living?
  • How do we develop a vision that encompasses lifelong issues and supports – early intervention, family support, education, MCFD, health, employment and income support as well as CLBC?
  • How do we stop the steady erosion of public funding (in real dollars) to the full range of service for adults with developmental disabilties, children with special needs and the families and caregivers who support them?

A starting point for this discussion is the “Outside Noise – BC Families for An Independent Review” Facebook group – where some of these discussions are already happening among families, self advocates and others. Please join us there and add your thoughts.

A first question might be: Is that the right place to start such a conversation. If not, does someone have a better solution?

======

—– Original Message —– 
From: Dawn Steele

To: sunletters@vancouversun.com

Sent: Wednesday, January 25, 2012 11:36 AM

Subject: Letter to the editor

Vaughn Palmer cites another government report on the troubled Community Living BC, in which Queenswood Consulting suggests the 
BC Liberals could help adults with developmental disabilities find work and independence, if sophisticated, well-organized families with an entrenched culture of entitlement weren’t blocking efforts to wean over-dependence on “richly” funded government supports. Palmer 
concludes reforms are unlikely, given such obstacles.

Reality check! Families have fought to expose cuts to employment and training programs, mismanagement, critical oversight gaps, lies and appalling mistreatment steming from CLBC’s brutal cost-cutting mission. Ordinary families who struggled for years in silent desperation reluctantly faced the media glare after CLBC pushed them over the edge. This is a fight for survival, not dependence or entitlement, and parents fighting for their childrens’ and families’ survival will continue to pose a formidably obstace to a government determined to shut out British Columbians with nowhere else to turn.

No parent would wish their child a future of dependence on CLBC if there was any alternative. But CLBC can’t offer proactive supports for independence because BC Liberal cuts have drastically reduced per-person funding and effective eligibility. Services now focus on crisis 
management and residential care for a narrower, high-needs group of severely-challenged adults who will never work, provide self-care or live alone without 24/7 support, while employable adults languish for years on waitlists.

Queenswood and Palmer also suggest families should rely more on “rings” of community volunteers. Is that an offer? After a decade 
of searching for the BC Liberals’ mythical army of unpaid volunteers, there’s probably 50,000 BC families ready to move in next door to whoever puts their hands up first.

If the objective was real change, Premier Christy Clark would have heeded families’ calls for an independent review of CLBC instead of wasting millions in tax dollars to have overpaid government consultants and beaureaucratic hacks recite the same tired old excuses, rhetoric and nonsensical “blame the victim” propaganda that they’ve been spouting for a decade while driving this sector ever deeper 
into crisis.

Dawn Steele, Moms on the Move

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