Today's announcement confirms a personal commitment that former Premier Gordon Campbell made in a private meeting with hotelier Sergia Cocchia shortly before the February 2008 Throne Speech, following private lobbying by the Cocchia/Lisogar family, who have a child with autism and who are staunch political backers/donors to the Premier and her BC Liberal party. The Cocchias invited Christy Clark adviser Pamela Martin and wealthy BC Liberal political donors such as the Aquilini family to establish the Pacific Autism Family Centre (PAFC) Foundation to advance their project following Campbell's 2008 commitment. Provincially-funded autism service agencies were recruited to help rally support for the proposed centre, with promises of new offices, elaborate facilities and expanded influence in overseeing provincial autism services.

The provincial government has never publicly consulted families on the proposed centre, undertaken any needs assessment or requested competing bids or proposals for the $20 million grant. The Province has already provided several million dollars to finance PAFC's project development costs and to help the foundation conduct its own provincial "consultations" in an effort to rally community support -- at a time when provincial funding for autism services has been cut and urgent autism support needs continue to outstrip budgets.

When the proposal was first announced in 2008, MOMS undertook a Web survey that showed most families would rather see new Provincial dollars go to boosting services, not constructing a new building. PAFC and Provincial authorities declined to respond.

In 2011, MOMS and other organizations, including the BC Association for Child Development and Rehabilitation and the BC Association for Community Living, challenged the proposed investment, citing the Province's failure to understake any needs assessment.

Critics also questioned investing scarce Provincial dollars in a Vancouver building that would be inaccessible for most families struggling to support individuals with autism in rural BC communities, where access to appropriate supports is often most difficult. Best practices in autism intervention also emphasize the delivery of services right in the individual's home, school or community wherever possible.

MOMS received threatening letters from provincial officials after leaking internal ministry documents citing advice from senior bureaucrats, who warned that PAFC's proposed business model would further erode operating resources for critical Provincial programs such as autism diagnosis and assessment.

The $20 million grant will not go towards any actual services or supports for individuals with autism or their families. The entire amount will go to construction costs.

Premier Christy Clark's "families first" policy seems to mean "buildings first" or "friends first." Why else would she invest in a building proposed by her political friends when her government continues to deny or reduce program funding for services and supports to children, youth and adults with autism and their families around the Province, including:

• Infants and children denied autism assessment and diagnostic services, with lengthy waitlists due to rationed BC Health ministry funding.
• Preschoolers with autism denied intensive early intervention, after the Ministry for Children & Families eliminated intensive early intervention (EIBI) programs in 2008.
• Chilren and youth with autism shut out of community daycare and afterschool programs due to rationed Provincial funding for specialized supports, without which daycare operators won't accept children with special needs.
• BC students with autism denied access to public school and/or special education supports critical to academic progress, due to a decade-long erosion of provincial Education funding for special education.
• BC youths with autism denied post-secondary education and training opportunities, career planning and employment supports due to inadequate Provincial program funding and supports.
• Adults with autism denied residential and living supports due to the ongoing CLBC funding crisis.
• Many youths and adults with autism being denied adult supports due to IQ eligibility criteria that ignore key functional challenges for people with autism.
• Families supporting high-needs individuals with autism denied critical respite and family supports, as CLBC and MCFD budgets continue to lag the rapidly-growing incidence rates of autism.

MOMS has repeatedly urged Premier Clark's government to invest in critical front-line services and support programs, not a bricks & mortar project that will do nothing to mitigate the severely-strained support structure that's causing so many individual and family crises in BC.

Today's announcement is a profound waste of scarce tax dollars and a shameful betrayal at a time when Premier Christy Clark and her government continue to turn their backs on BC families and individuals with who are struggling to cope with the challenges of autism.

Dawn & Cyndi, MOMS

Background reading on the $20 million autism funding announcement

• Province, city announce support for autism centre
• Autism groups debate investment in a provincial autism centre
• MOMS restores links to leaked ministry document challenging claims about PAFC plan benefits

MOMS wants your feedback on whether the BC government's action plan and new funding are achieving the intended results.

Please limit initial responses to 2-3 sentences per question, as we can't analyze lengthy case histories to identify key challenges (e.g. denial or reduction of supports, denial of appropriate choices in living supports, waitlists, ineffective complaint resolution mechanisms, service quality concerns, lack of coordination between CLBC and other servicces, youth transition problems or failure to respond to a service request)

Please email your answers to [email protected] Your feedback will guide our advocacy efforts and those of partner groups such as the BC Community Living Action Group, which has played a key role in raising awareness of challenges in community living.

Community Living Survey:

1. Has the BC government's response alleviated your concerns? (Yes, No, Somewhat, Minimally, Mostly, or No - Situation Has Worsened)

2. State briefly what were the concerns re your personal situation and what has/has not improved:

3. If you sought help from the Client Support Team or the Advocate for Service Quality, were they able to resolve the concerns to your satisfaction? (Yes, No, Somewhat, Minimally, Mostly, or No - Situation Has Worsened)

4. Have you experienced any improvement in coordination of services between CLBC and other agencies/programs?

5. Have you experienced any improvement in challenges linked to age 19 transitions?

6. If you have unresolved problems in accessing the supports and services you need, briefly state what those relate to. (e.g. denial or reduction of supports/contracts, service quality, waitlists, lack of coordination between agencies, transition challenges, failure of complaint resolution mechanisms, denial of choice in living supports, unresponsive bureaucracy, etc)

7. To which specific program(s) do your concerns relate (e.g. residential, respite, day program, employment supports, CSIL, individualized funding, individual planning, transition supports, mental health/ dual diagnosis or Personalized Supports Initiative for adults with IQ over 70)

8. From what you have seen so far, does government's action plan give you more confidence in the ability of the following to meet your community living support needs, now or in the future:

A) CLBC

B) Client Support Team

C) Advocate for Service Quality

D) The Premier's Action Plan

9. Are you willing to share your experiences with the media and/or Minister Stephanie Cadieux and/or Opposition Critic for CLBC Nicholas Simons? If so, please provide your email and/or telephone number below, as well as the name of your community (e.g. Vancouver, Cranbrook, etc)

Thank you for taking the time to complete our survey - please invite others who may have experienced past challenges to do the same.  We will report a summary of the feedback but your individual comments will not be shared with anyone but MOMS coordinators Dawn Steele and/or Cyndi Gerlach without your express permission.

Have a great day!

Dawn & Cyndi, MOMS

Here's how the Michener Awards Foundation described the Times Colonist's entry:

"The Times Colonist in Victoria used its resources and expertise to expose a stealth policy by the B.C. government that forced people with developmental disabilities to move from group homes to cheaper accommodation.  The newspaper’s sustained campaign – featuring many personal stories of developmentally disabled individuals and their families struggling with government cutbacks – spoke for the powerless and the voiceless. The coverage forced the province to change course and commit $40 million to improve services, demote the minister of social development and announce policy changes. As well, the CEO of Community Living BC resigned and an internal audit of its operations were ordered." (Read more)

MOMS was one of many family groups and individuals who worked with Mr. Kines and other reporters to help expose CLBC's "stealth policy," which involved forcibly moving people with developmental disabilities from their homes, forced contract/support reductions and other harsh measures ordered by the BC government to cut community living costs.

Read MOMS' letter in support of the Times Colonist entry, commending the critically important role played by Mr Kines and his colleagues at the Victoria newspaper in holding the BC government accountable for the crisis created by these "stealth policies."

The winner of the 2012 Michener Awards will be announced in Ottawa on June 12.

MOMS congratulates the Victoria Times Colonist on the prestigious nomination and for its demonstrated commitment to excellence in journalism.

My only child started his journey through BC's public school system in 1999 and it's a huge relief to know that he will graduate this year. It feels like those movie scenes where the building explodes just as the hero hurls himself out the door -- except I know there's 500,000 other children still trapped in the building, and thousands more joining them every year.

I remember the first day of kindergarten like it was yesterday. We've encountered wonderful people and survived many challenges. We've both learned and grown a whole lot and I couldn't be prouder of the young man now going forward to face life as an adult. I'm also proud to be part of a progressive society that has valued and invested in ensuring that every British Columbians child, regardless of wealth, connections or intellect, gets an opportunity to realize their potential.

But these past 13 years have also shown the dangers of complacency, inertia, short-sightedness, and political expediency. Every year, special education resources critical to our son's success have been steadily eroded due to Provincial underfunding, which started under the former NDP government and accelerated under a decade of BC Liberal rule. Expertise and capacity amongst those who work with the most challenging students in the system has also been steadily eroded. Despite endless talk about putting students first, those with the power to reverse these changes have failed utterly to stop the damage.

In 2006, the BC Liberals and the Opposition NDP ignored the advice of all education partner groups except BCTF when they passed Bill 33, the Class Size and Composition Act. MOMS was one of the provincial advocacy groups representing students with special needs that penned a joint letter opposing Bill 33's class composition caps in particular as both discriminatory and pointless.

Our fears were realized, as Bill 33's class size limits forced schools to cut even more special education teachers, to gut more school libraries and shutter more schools in order to fund extra classes. Boards were also forced to divert millions more in scarce resources to fight futile Bill 33 teacher grievances - futile, because successful challenges only forced the Boards to rob Peter to pay Paul. Without new Provincial funding, it's a zero sum game, and all you're doing with rules like class size or composition limits is rearranging deck chairs on the Titanic.

In a context of inadequate resources (which even I have to admit isn't going to ever change!), giving local Boards, schools and teachers the flexibility to allocate resources to meet the most urgent needs they face on the front lines, to use creativity, or to do things the way it works best for their unique situation is the most effective way to mitigate the harm to students. I've watched committed, resourceful staff over 13 years find ways to make the system work despite its flaws, precisely because they were given scope to do things differently. This is not an argument for underfunding or for letting staff go wild, but a powerful rationale for believing in people.  The BCTF continues to vigorously oppose this argument, and insists on restoring some version of the rigid class size/ composition limits that the BC Liberals finally repealed last week via Bill 22.

Having learned quickly how to advocate effectively for my own son, my own journey through K-12 included many desperate pleas for help over the years from families of students who weren't as fortunate. While the system provides costly and elaborate conflict resolution mechanisms for disgruntled teachers, it still provides almost no recourse for the student who is wronged or failed in any of this, or for the families who try to help them fight for their rights.

Surely such opportunities should be the cornerstone of an effective, responsive and accountable system? Perhaps if more attention were paid to providing student-controlled accountability instruments in a context of more flexibility and more resources, all the rest would be forced to fall into place. But despite the rhetoric, neither the Province, the Boards nor the teachers have ever made any meaningful attempt to promote reforms that would really, seriously and effectively ensure that students' interests were first and foremost in all decisions.

I've supported teachers in their last three bargaining rounds since 2001, because in the previous round they'd given up wage increases in exchange for contract provisions that Christy Clark decided to strip illegally in 2002. But each time the BC Liberals approved another compensation increase for teachers, they failed to fully fund it. So students had to finance the gap, sacrifcing more core services, or watching their schools shut down in order to balance Board budgets.

I have great respect for most teachers, their dedication and commitment and the amazing work they do. But their compensation has risen more in the past decade than that of most taxpayers paying the bills, many of whom work just as hard and demonstrate equal commitment and dedication in their own work. These are tight economic times and BC's teachers do not have a hardship case, but after almost a year of "bargaining" they're still demanding a 15% pay increase -- a demand that would guarantee more cuts and more sacrifices from students. Many dedicated public sector workers who serve our children out of school and in adult services have a much stronger argument for pay increases and yet they've settled for zero this round, asking that any new Provincial dollars go directly to addressing service gaps.

Despite the economic climate, BC taxpayers need to consider the business case for urgently reinvesting in public education, given the far higher socioeconomic costs of failing to do so. Today's students cannot wait until the economy is booming again. The window of opportunity in K-12 is all too brief, as any parent of a Grade 12 student can tell you. But the first priority for reinvestment today is to restore crticial student supports and programs cut over the past decade -- not another major increase in staffing costs that will provide no net benefit to students.

Many parents like me joined educators over the past decade to advocate for funding to restore the cuts we've seen on the front lines at our children's schools. We built a solid coalition and generated broad public support, finally forcing even the BC Liberal government to admit their cuts to special education had gone too far. But the BCTF's militancy and isolationism this time has severely fractured the teacher/ parent coalition that fought so hard in the past to mitigate a decade of provincial cuts. And our fractured opposition has only emboldened hard-right elements within the BC Liberals to strengthen their attacks on public education with some of the ugliest components of Bill 22 passed last week.

Fed up with the rhetoric and intransigence of both parties, most ordinary citizens are simply turning their backs on what might have been a pivotal rallying point. No matter how many millions both sides spend on costly TV propaganda campaigns, or how ideologically convinced they might be that they are the ones fighting the good fight, the only message that's coming across loud and clear from both sides is the self-serving one -- it's a message that turning off the public, forcing taxpayers to tune out and eroding the solid base of public support that we built together in support of public education..

I find it extremely sad to watch the very people who think they are trying to save public education ending up unwittingly helping to destroy it. The teachers are now threatening an illegal strike and/or withdrawing non-core services again, actions that will only further punish the innocent children caught in the middle of this, alienate more parent allies and support proponents of privatization, by further cementing and radicalizing public opposition to BCTF demands. Already, we are seeing growing calls for school vouchers, union-busting and the like. And while the Education Minister has finally confronted some key changes that put students first again, his poisonous pill is so full of toxic additives that it will do far more harm than good.

British Columbians go to the polls in another year. Public education certainly has the potential to be a defining election issue, as it was in Ontario when the McGuinty government swept the Conservatives out of office in 2003.

In our last provincial election, British Columbians concerned about public education had slim pickings indeed, with equally insipid and uninspiring platforms offered by both the BC Liberals and the NDP. We can ensure that's not the case in 2013, if we start pressuring all three parties - NDP, Liberals and Conservatives - to spell out what they're offering in terms of detailed plans for fixing our ailing public education system and putting students first, while respecting the roles of both teachers, funders and the broad public interest.

Success in placing Education at the top of the political agenda for 2013 is what will save public education. Not this.

Dawn Steele, MOMS

However, we do not support the positions taken by either the Province or the BC Teachers Federation. We believe neither side is putting students first, with key positions by both parties that are harmful to students with special needs in particular.

Our previous post addressed what to us is one of the key issues in the dispute -- class composition caps -- with links to a 2011 MOMS brief arguing that class composition caps are an ineffective, costly and discriminatory solution that has failed to address the problem of unmanageable classes, while accelerating the erosion of special education resources in our public schools.

This post focusses on funding, in particular funding for special education and other critical learning supports.

The bottom line is the Province has failed to fully fund public education costs for more than a decade. Students across the province have faced cuts to service levels almost every year since we were first thrown into the role of parent advocates in the late 199os.

In the 1990s, teachers traded pay increases for improvements in "working conditions": i.e. contract provisions limiting class size, composition and supplemental staffing.  Those provisions were always controversial and they were lost when former Education Minister Christy Clark illegally tore up the teachers' collective agreement in 2002. In 2006, the Province restored a new variation of class size and compostion limits through Bill 33, despite near unanimous opposition from other education partners, including parent groups. We argued that class composition caps, in particular, were discriminatory and ineffective. Six years later, with parents and teachers more frustrated than ever, students being left ever further behind, and parents avoiding having their children formally designated to avoid discrimination, those concerns have been vindicated.

When Christy Clark tore up the teachers' contract in 2002, she imposed a new agreement offering salary and benefit increases that added hundreds of millions in new education costs. She also eliminated targetted provincial funding grants for most students with special needs, creating enormous pressures for boards with relatively high proportions of students with learning disabilities, for example. The failure to fund these cost increases forced local boards to make unprecedented cuts and to close scores of schools, sparking grassroots campaigns like the 2003 Vancouver SOS movement and a hunger strike to save the only school in remote Wells Barkerville.

Since then, despite acrimonious relations between the Province and the BCTF, several more imposed contracts have each granted further pay and/or benefit increases. Increases in the average salary for BC educators since 2001 have outstripped inflation (Consumer Price Index) by 6%. Meanwhile, total provincial education funding has lagged inflation, and lagged actual costs even further, since staff salaries are (naturally) the primary component of education costs.

The result: BC's public school students have financed the growing gap by absorbing repeated reductions in front-line service levels.

Since the introduction of Bill 33 helped reduce class sizes and/or limit further class size increases, boards have been forced to cut other services to cover the costs of smaller class sizes, which the Province again failed to fully fund. This is why supplemental learning services like libraries and special education have been disproportionally hit, resulting in a devastating erosion of services for the most vulnerable students in the public education system.

(It is worth noting here that while overall enrolment has declined since 2001, the number of identified students with special needs in BC's public schools has continued to climb.)

• This spreadsheet sums up the relevant data documenting all this.

The above spreadsheet was initially developed 2 years ago, to support our advocacy efforts as public schools faced another round of harsh cuts in 2010 due to a Provincial Education budget that failed to cover rising costs, including teachers' salary increases. We have updated it to reflect the 2011/12 data.

In light of all this, we believe a position that puts students first would include the following:

1. A significant increase in provincial funding for special education (the Province's current offer doesn't come close to making a dent in what has been lost - a minimum would be $100 million in new dollars for special education in 2012/13, with more in year 2 as determined collaboratively under #3 below).
2. Agreement between the Province and teachers that any Provincial education funding increases will go first to restoring lost staffing and other front-line supports for students (e.g. libraries, special education, ESL and Aboriginal student services, early assessment and intervention for learning challenges, training, etc), before the Provincial government grants any further increases to staff salary and benefit costs.
3. Agreement by the Province and the BCTF to sit down and work collaboratively with parents and other education partners to identify all the causes of class composition challenges (including underfunding, teacher training and other structural barriers) and to develop and fund effective and mutually-acceptable solutions to class composition challenges.
4. No interrruption of services and an immediate return to teachers' performing their full roles.

Dawn Steele & Cyndi Gerlach, MOMS

• Read the Vancouver Sun report.

MOMS and other parent advocacy groups, along with trustees and administrators, opposed the caps imposed in 2006 with the passage of Bill 33. Only the BC Teachers Federation supported the caps at the time. Now, with another round of labour contract negotiations once again stalled interminably, the province's teachers are again demanding discriminatory class composition limits as a solution to unmanageable classes.

Below is an analysis I wrote last year on why class composition caps will never solve the challenges of unmanageable classes and unmet needs among students with learning challenges, and what we need to be looking at instead.

• Read: Class composition and the special needs problem

I've summed up key points in a letter to the Vancouver Sun:

Kudos to Education Minister George Abbott. He's absolutely right that legislated limits on students with special needs in K-12 classrooms are discriminatory.

Parent groups were united in opposing the class composition limits introduced in 2006. They have proved unworkable, failing to help students or teachers while creating nightmares for administrators.

The solution to unmanageable classes is not discriminatory quotas but better support for teaching and learning that addresses the realities of today's diverse classrooms. That means broader training for teachers, restoring learning supports eroded by a decade of provincial underfunding, flexible models that adapt to actual needs, and appropriate use of technology and innovation to help all students overcome learning barriers without expecting teachers to be superheroes.

Time for the Province and the teachers union to stop posturing and put students first by immediately reinvesting in learning supports and training, addressing gaps in teacher certification standards and supporting new multi-stakeholder frameworks for constructive and collaborative problem solving.

Dawn Steele

I love the diverse feedback we get at MOMS. For example one mom this week pointed that what's happened to CLBC is part of a far broader pattern -- a "Neo-Liberal" agenda that's driven policy excesses around the world and created widespread suffering, global instability and economic and social havoc. Overly simplistic assumptions have driven this agenda: that people always thrive when you stop trying to help them, that big government is the problem, and that austerity and deregulation will cure all evils (...like not having enough money).

Voters have been happy to endorse politicians who assure us that excessive taxation is the problem, and that a steady diet of tax cuts will restore health and vigour. It's an alluring message, and as with all false premises, a small grain of truth and a whole lot of wishful thinking gives it a compelling ring. But how true is it?

Premier Christy Clark warned that throwing more money at CLBC was not the answer, even as she claimed to be throwing another $40 million at the troubled authority.  A slew of internal reports reiterated over and over that CLBC needed to learn to better manage its money because we can't afford more and we all have to live within our means.

Well, we'd agree that CLBC has done many bad things. But living within its means is one task which even the staunchest critic would have to admit that CLBC has excelled at - notwithstanding high-profile failures like excessive bonuses and moonlighting employees (both serious errors in judgment, to be sure, but not the kind that put any real dent in a $700-million budget). And we can demonstrate the community living sector's fiscal virtue pretty compellingly, thanks to some nifty charts developed by accountants at the Developmental Disabilities Association.

Reporters at the Victoria Times Colonist revealed months ago that CLBC has reduced spending per person significantly since its inception. But with caseloads rising yearly, is the community living budget really unsustainable, as Premier Christy Clark, her predecessor Gordon Campbell and their political colleagues keep insisting?

In fact, in relation to what we earn as British Columbians, we're spending a smaller fraction of our income on community living services today than we did a decade ago, as the first chart shows (click on images to enlarge them).

Moreover, in BC, we've been cutting the proportion of our income that we provide to community living at the same time as the supposedly far more ideologically right-wing US governments have been steadily increasing the proportion of their citizens' earnings that go to supporting adults with developmental disabilities.

The result: BC now ranks near the bottom of the pack in North American jurisdictions. Relative to what we earn as BC citizens, we are spending a fraction of what fellow citizens in states like New York are spending to support adults with developmental disabilities. Our commitment lags somewhere below poor states that are generally not seen as bastions of progress and inclusion, such as Mississippi.

So let's give CLBC credit where it's due. On the whole, the authority has more than lived up to the obligation that we all share to be fiscally prudent. In fact, it's been pretty clearly established now that CLBC went way overboard in that effort, under unflinching pressure from a BC Liberal government demanding that it do ever more with less.

If anyone has not been doing their fair share, one could argue it is those who have benefitted directly from a series of tax cuts implemented in BC since 2001 - and that's primarily high-income earners and corporations.

So who are the "highly-skilled, resources and committed" individuals with the "strong culture of entitlement" that one government report said was responsible for CLBC's budget crisis?

Not the families fighting to restore what British Columbians saw as a fair and reasonable deal for adults with developmental disabilities just a decade ago.

Many contractors and agency directors claim it's a matter of survival. They tell us CLBC makes it very clear that if they don't cooperate in reducing services, or if they complain publicly about risks to their clients, their contracts can be cancelled and handed to someone else with less regard for quality of care.

The allegations are disturbing. But it's been challenging to document how systemic this is and what risks it poses to adults if no one will put complaints on the record.

Premier Christy Clark just released an action plan based on 3 internal reviews, none of which sought to explore these concerns, despite persistent complaints over 18 months. The silence among service providers also emboldened government to go on the offensive against families. One report dismissed advocates as over-zealous parents with a strong culture of entitlement who were blocking CLBC's efforts to improve quality of life and independence for their loved ones!

But CLBC contractors may be finally overcoming the fear factor. Victoria agency director Sarah Balazs, who runs group homes and supported living for high-needs adults, decided enough was enough. She started sharing her complaints with reporters after months of being ignored by CLBC, the Premier and Minister Cadieux. Predictably, CLBC and Ministry staff finally responded as soon as Sarah started copying her complaints to the media. A site visit is planned for tomorrow and we will be closely tracking and reporting on what comes next.

Sarah's complaints support many specific issues that families have raised and that were largely ignored in the recent reports and the Premier's 12-point plan. These include: insufficient funding to support youths turning 19, eroding quality of care due to budget pressures, threats against those who complain, no advocacy voice for adults without families, fundamental flaws in the CLBC model and rationing tools like the Guide to Support Allocation, crisis management focus that inflates costs, and growing health and safety risks.

The overall message is by now familiar to all: The government apparatus responsible for supporting adults with developmental disabilities is still overly focussed on cutting spending, without regard to impacts on health, safety and wellbeing of adults who have nowhere else to turn.

Below are copies of Sarah's correspondence, as shared with MOMS:

• January 19, 2012 letter to families, pointing out that the agency director is funding a deficit from her own pocket because CLBC has not increased funding levels for the agency's basic costs like food and transportation since 1994!!
• Email chain (Oct. 2011 to Jan. 2012), as the agency sought to bring concerns first to CLBC, the minister and Premier, then to news reporters, and eventually to MOMS, after getting no response from any of the above.
• August 2003 letter to Doug Woollard re cost reductions demanded by the Interim Authority (CLBC's predecessor). This illustrates how long agencies have been fighting and dealing with budget cuts that put their clients at risk. This is just the latest of many rounds that have severely eroded safety, health and quality of life.

MOMS applauds Sarah's courage in standing up to the bullies and demanding better for the adults whom she and her staff support.  We offer her our full support in her efforts to secure a fair deal and continue to encourage others to do the same.

Dawn & Cyndi, MOMS

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: [email protected]

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

Unlike the other reports, the new Queenswood Consulting report is only available on request (but you can download a copy here). This is a must-read for families, self advocates, service providers and individuals from linked sectors such as Health and MCFD, and it re-emphasizes the urgency of securing an indepdendent review of CLBC and community living in BC!

Columnist Vaughn Palmer cites parts of this new report extensively in a Vancouver Sun column.

Below are key extracts from this report, which includes both eye-opening revelations and very troubling warnings about the direction in which the BC Liberal government may be hoping to take community living. 

On the real reason for CLBC's creation:

Page 46: "One of the key motivations behind the devolution of service delivery from MCFD to CLBC was a belief that the proposed system would offer more predictability and overall sustainability than the historic model. There was a belief that a cost-effective model would be possible by utilizing options like individualized funding, increased role of families, and an increased use of generic and community services."

Christy Clark, Gordon Hogg, the BC Liberals, Doug Wollard, Doug Walls, the Community Living Coalition and families and self advocates on the Interim Authority board all assured us repeatedly that CLBC's creating was about a better life and empowerment for adults with developmental disabilities and their families MOMS, BC FamilyNet, DDA and other groups were denounced as contrarians for warning all the rosy promises and visions were a smokescreen for cutting funding.

So how to get the cost-cutting CLBC vision back on track??

1. More budget cuts:

Page 20-21: "In April 2010, CLBC committed to undertaking a one-time initiative to review all contracts managed by the organization... An overarching goal of the initiative is to examine each contract to identify areas where savings could be realized....This review is now underway, and a standard manner for regions to implement and report on the initiative is outlined in CLBC’s Savings Initiatives Tracking Template (SITT), which was distributed to CLBC offices in April 2011. The contract review process applies to all contracts except direct home share, individualized funding and microboards. As of August 2011, 696 reviews of staffed residential and community inclusion program contracts had been completed, with another 888 contract reviews still in process. The total amount of savings identified in completed reviews stood at $24.87M (on contracts with a total value of $145.45M), which CLBC will use to apply to caseload growth and addressing the needs of people who are on the RFSL. As a result of contract reviews, 64 homes have closed in staffed residential services, with 169 people moving into different residential arrangements. In community inclusion service contracts, 33 locations have closed. Where the existing service continued, 166 contracts had no reduction in funding, while 301 had funding reduced. Along with the 888 reviews still underway (estimated savings: $16.05 M on total contract values of $234.63), the contract review process will include an additional 1,303 contracts where reviews have not yet started. There is not yet an estimate of potential savings with respect to the 1,303 reviews that are still pending.

Page 26: "...It is likely that a review of community inclusion contracts will identify and illuminate opportunities for efficiencies, as has taken place with residential contracts. CLBC is now going through these contracts to assess whether services, supports and staffing levels are appropriate. Where discrepancies are identified, contract will be re- negotiated. Regions will be encouraged to identify efficiencies.

"...Communications must also consider how to address larger issues of entitlement and expectation, both from families and from service providers. Traditionally, these groups have directly or indirectly determined how services are provided. If CLBC and government more generally is to bring about a more efficient and rationalized service approach, considerable efforts must be made to address this traditional presumption."

Wasn't CLBC created to support more involvement of families and communnity as partners in developing more choice and personalized services?

Page 27: "CLBC is also promoting a conceptual shift towards meeting disability related needs by ensuring that family, community, and other "natural" supports remain in place and are not supplanted by funded services....The hope is that this will foster a greater shared understanding that, within current financial restraints, government alone cannot be responsible for serving people with disabilities. ... Overall, this is a fundamental shift that...holds promise for substantial and structural efficiencies."

So families will have to assume more of the responsibility for delivering community living with no help from government, while the bureacrats give us less say.

2. Reduce expectations

"Page 47: "It was recommended that CLBC clarify and clearly communicate that its role is to appropriately and competently allocate resources, not to act as an advocate. This was part of an overall recommendation to better communicate with the sector, in order to manage expectations and reduce frustration amongst clients, partners, and stakeholders.

Progress: Beginning in the summer of 2009, CLBC started specific effort to clarify its role... increased efforts to manage and address unrealistic client and stakeholder expectations will be a focus of communications going forward."

3. More partnerships

Page 46: "A key component of this strategy going forward will be to more effectively communicate that the service delivery model for people in British Columbia is comprised of many parts, and that government-funded services are only one part of this support system."

4. More use of generic services

In other words, convince people requesting CLBC services to rely instead on community centres, etc.

Page 47: "CLBC annually conducts public awareness initiatives to raise awareness of the importance of inclusive communities and the work that CLBC does. The Start with Hi’ initiative is now in its third year, and aims to increase understanding

Page 48: "An Ageing Parents Planning Pamphlet was developed and explained to a number of community agencies, including mayors, community colleges, police departments, health services, hospitals and first emergency responders, and recreation and seniors centres."

5. Promote innovation

For more on how CLBC defines and measures success in achieving innovation, see Performance Metrics below.

6. More emphasis on employment

Page 25-26: "Transition from children’s services is challenging, in part because families are relatively richly served through MCFD and the education system. There is a wide perception that children and families come to CLBC with expectations that far exceed the ability of CLBC to financially meet, partly because they have become accustomed to special education and MCFD-supported services that are not as vigorously tested for relevance to disability-related need. Particularly with respect to the education system, there are clear opportunities to streamline service provision, rationalize approaches, and address discrepancies in family expectations versus government and public resources.

"...CLBC estimates (very roughly) that about 50% of its current clientele is employable, but have grown up in a system that assumes they will not work, and fails them by not teaching relevant skills and abilities. CLBC, looking to jurisdictions like Washington State, is at the start of a process to put much more emphasis on employment supports and services. There is recognition that it will be challenging and require significant investments to shift individuals and families from a fully supported, service-dependant environment to an approach that emphasizes employment readiness, as it must be based (at least initially) on a very individualized approach.

"...CLBC is now exploring ways of promoting employment readiness and employment support services. Options under consideration include the recognition and fostering of agencies who are committed to employment first programs over those who retain community inclusion/day programs."

Future directions

If you've been following the decade-long community living restructuring, you will have read all this before - it's the same old failed zombie ideas presented by the same people in report after report since the Doug Walls glory days of 2001: In short: a serious attitude adjustment is all that's needed to compensate for government's unwillingness to pay its share to maintain supports for adults with developmental disabilities."

Once again, here are all the key components of the same old failed strategy:

1. De-emphasize paid supports

Page 90: "Many participants [See below for participants list - the only "participants" Queenswood consulted for this study were ministry and CLBC bureaucrats] in this review characterized CLBC (and the developmental disabilities sector in general) as being over-professionalized and overly focused on assessing need for paid care in its service delivery approach. This is not out of the norm with other jurisdictions, who also tend to emphasize paid supports. However, there is a growing recognition that, in the context of increasing demands and scarce resources, governments must address daunting financial restraints in a different manner."

2. Individualized funding

"Individualized funding was...at the core of CLBC’s service delivery and operational model... (Implementation has) been hampered by a general resistance...amongst CLBC’s front-line staff...There has also been a reluctance among families to assume the role of employer (and)...efforts have also suffered from a lack of leadership and support at the governance and political levels to strongly move families towards this option."

If families refuse to choose this option (as they failed to "choose" to give up group homes across the board), government should simply choose it for them.

3. Employment

"CLBC has been placing a greater emphasis on employment supports and services. Many believe the current system, from MCFD and Ministry of Education, prepares people to expect paid supports, and to specifically not consider the option of employment."

On the contrary, families of adults and youths who are capable of employment or supported employment have been fighting for more supports that promote independence, not less. That includes families fighting CLBC efforts to cut and restrict access to supported employment and training programs.

4. Adult transition

"There is a widely shared sense that the level of service that children and youth obtain from MCFD and the education system is so full [They actually said that - see Page 92] compared to what is available to them as adults that they are inevitably disappointed when they come to CLBC for assistance. Many believe that these systems result in a sense of dependency and an automatic presumption of paid services and supports... Earlier, more integrated communications to families – even if the message is only that there will be far fewer services to draw from when youths turn 19 – can only help to reduce conflict and smooth the transition to the adult service delivery system."

Good luck with that.

5. New assessment tools

"Steps are underway to identify options for assessment tools that would have a wider application, with the goal of identifying and implementing a standardized tool for assessing disability related needs for individuals with developmental. This work will include identifying the issues and options associated with implementing cross-ministry tools to enhance consistency of decision making, resource allocation and service fairness. "

See #7 below. The direction indicated is a single system serving CLBC and the broader disability population, with a simplified needs rating system (high, medium, low) and each individual gets a standard individualized funding allocation (covering health needs, community living, employment support, disability supports, social assistance etc) to buy what they can.

6. Disparity between DD and other disabilities

"The average amount of funding that is available for an adult with a developmental disability far exceeds that of adults with other disabilities... It is partly due, for example, to the relatively rich funding contracts that accompanied the closure of the institutions...but the sector remains characterized by a well-organized advocacy arm that is vigilant against any attempts to structure lower level services into the system."

Where does this bizarre comparison come from? Does the wheelchair-using Minister Cadieux think that an adult with IQ below 70, autism, life- threatening health issues and no verbal ability is a "lucky ducky" who should stop complaining and count him/herelf fortunate compared to her because they might at some point qualify for a home share placement and she doesn't?

7. Rational approach

"A different option would be to work towards a system that provides much more predictability and stability, perhaps through the automatic granting of set levels of funding. Different funding levels could be based on key factors such as the individual’s age and broad level of need (high, medium, low, for example).... Set, capped levels of funding would also provide government with much more predictability for financial planning."

This model is beloved of bureaucrats for its simplicity, but highly unfair to individuals and families, and an ineffective way to allocate scarce tax dollars in terms of benefits per dollar. Like the controversial new UK model and the autism funding models, everyone gets the same funding, regardless of the wide range of actual individual need within their category. It works well for those who can afford to top up their allocation out-of-pocket (i.e. wealthier folks) but is a disaster for those who have no resources to add when the funding is not enough to cover urgent needs. The result is an additional burden on other social services that are already severely stressed.

8. Cultural challenges

"Many participants in this review [i.e. bureaucrats] spoke of a sense of entitlement among families in this sector that is stronger than other sectors. Many of the families that lead advocacy in the sector are highly skilled, resourced, and committed to increasing the level of funding that individuals receive, rather than considering alternative support methods including an expanded custodial and care role for families themselves. Many families in this sector have high expectations for supporting their sons and daughters, and the sector has a demonstrated history of political sophistication to advance its goals. This is a fundamental contributing factor to the difficulty in making meaningful changes to the service delivery system as evidenced, for example, in the challenges that CLBC experiences when trying to shift individuals living in group homes whose needs do not match the need for this level of service to living in community.

"Addressing this culture should be at the core of any directions that government takes towards the service delivery system for people with developmental disabilities."

The problem is not CLBC, it's the families trying to hold the CLBC bureaucracy accountable for living up to the mandate that its political masters promise. Silence the families/Outside Noise and the problem magically goes away. (Forgive the profanity, but only a bunch of a$$-kissing bureaucrats could come up with such a brilliant solution!)

Other observations of interest:

CLBC Performance metrics:

Page 30 - 31: Performance indicator: "Innovation"

"Explanation: - Percentage of individuals newly entering into residence who do not go to staffed group homes; - Number of individuals who started the fiscal year in group home, but moved to another setting."

Performance indicator: "Quality of Life and Safety"

"Explanation: Total number of individuals deceased in the reporting period."

These are extraordinarily narrow measures of how well CLBC is doing, especially if one of the founding principles of CLBC was supposedly to improve the quality of lives of the people it serves. Not dying is currently about as good as it gets in terms of a good quality of life, as far as CLBC is concerned.

Queenswood's 2008 recommendations

Although 12 of 27 recommendations from the 2008 Queenswood review are incomplete or ongoing, Queenswood concludes that the "vast majority" are "substantively" complete. The issues it deems substantively resolved include performance management, integration with other government systems, fostering use of generic services and managing expectations, which Queenswood specifically identifies in this latest report as key concerns going forward. This is a significant contradition. Further, those deemed "complete" were checked off largely if not solely on the strength of CLBC's claim that the issue had been resolved (thanks to sloppy editing, Queenswood inserted "CLBC completed but forgot to delete the "we" from text that was clearly inserted verbatim from CLBC). One such example was the 2008 recommendation to review use of the controversial GSA assessment tool:

Page 43: "In March 2010, testing and feedback indicated that the a revised version of the GSA had greater reliability than the previous version. It was recognized that further enhancements would continue to enhance the tool’s efficacy and CLBC decided not to adopt another planning tool. The GSA remains in place as the primary tool for assessing need and allocation appropriate resources. Complete. "

So what about all those complaints in fall 2011 that CLBC staff rigged/ revised GSA scores to justify a proposed contract reduction?

Confusion over CLBC caseloads

Page 7: "CLBC currently carries a caseload of 13,696 individuals with a developmental disability and 181 individuals with FASD or ASD (September 2011)."

In other words, when CLBC says it's serving 13,700 adults, plus another 181 individuals through the PSI program, they're counting anyone they're in contact with, regardless of whether they're actually receiving any CLBC services or not. Many of the individuals whom CLBC claims to be "serving" are not receiving any CLBC-funded services at all.

Although it's hard to see how there could be any confusion between the verb "serve" and the noun "service," Queenswood accepts CLBC's outrageous misrepresentation of whom it is actually "serving."

- 10,856 individuals who are receiving services and supports appropriate to their needs.

- 2,126 individuals who are currently receiving services but who have also requested additional services.

- 832 individuals who are currently not receiving services."

Waitlists

Page 14: "For people not receiving service, the most frequently requested service is community inclusion such as skill development or employment.

Page 15: "While the demand for services is certainly growing and outstripping available resources (the RFSL included 2,327 individuals one year ago and 1,895 individuals two years ago), the bare numbers do not provide any sense of the more nuanced context. As summarized on the table below, 72% of people on the RFSL currently receive services and are waiting for more. Only 16% have been without any services for more than six months."

Glass half full/half empty: Almost 30% of those on the list (a number equivalent to CLBC's annual caseload increase - i.e. a full year's backlog) are receiving no services at all. When you add those who are only receiving services for 1 day a week or less, the number waiting is almost equivalent to a full 2-year backlog of new clients receiving no services or minimal services.

Families have also complained that many service requests are not included in this list. These gaps are not mentioned in the review, so the numbers waiting may be far higher.

Data on CLBC service delivery

• Residential services: 2,508 in group homes, 3.176 in other residential (average residential cost $75,202)
• Individual and family suport services: 7,797 users (average cost of $27,445)
• Employment services: 1,534 (average cost $4,563)
• Compared to other jurisdictions, CLBC's eligibility criteria to access services are more restrictive, so the population served has relatively higher needs on average (Page 71).
• CLBC's average spending per client, compared to other jurisdictions: housing (average); facilitation and referral (much lower); individual and family supports (average); and employment services (lower).
• BC's disability benefit rates are also the lowest among the comparable jurisdictions.

Although BC spending per client is average or less than other jurisdictions, despite limiting access to a smaller, higher-needs group, Queenswood concludes that "BC is a leader in meeting the demands of families of people with developmental disabilities."

Participants in the Queenswood review

For this report, the only individuals whom Queenswood actually consulted were the same Ministry and CLBC bureaucrats responsible for the current crisis in the first place. (See Appendix 2).