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:
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
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(Video from Holman's Public Eye Online)
No word yet on exactly how the proposed $34 million East Van facility, with its I-pad equipped waiting rooms, "subtle" paint colours, North Shore views and rooftop gardens will help families in Chilliwack or Cranbrook who've been told there's no money for respite, zero funding/ support for kids once they turn 19, no money for aides in school, and only $6,000 a year for therapy that costs $50,0000.
But we're dying to hear PAFC and the "comunity leaders" helping to plan the building concept explain on Premier Clark's behalf exactly how they think that's going to work.
The Premier's promise also appears to conflict with statements by her Children's Minister, Mary McNeil. Last month, McNeil told MOMS the $20 million will go towards capital building costs, and that her government is counting on PAFC to fundraise privately to cover the costs of any promised improvements to autism service programs.
Meanwhile, Public Eye also quoted Housing Minister Rich Coleman, whose ministry is putting up the funding for the centre via BC Housing's budget for affordable housing. Under questioning from Opposition Critic Nicholas Simons in the BC Legislature, Coleman assured British Columbians that he was confident this was the right thing to do because his sister in Ontario was an expert on autism:
Read the full post on Public Eye.
]]>A major debate is underway among BC autism groups and organizations over the Province’s plans to invest $20 million to help construct a new building in Vancouver to house a proposed provincial autism centre (Pacific Autism Family Centre or PAFC).
Last week, we circulated a position paper from BCACDI, which represents agencies and providers for early intervention services across BC, urging the Province to undertake a needs assessment to determine the best way to allocate available Provincial dollars -- a suggestion that has attracted significant comment. We've been urged to share the various perspectives via our networks to test the community pulse, so please share this link!
BACKGROUND: When the proposal was made public in 2008, a poll of over 500 families in MOMS & other autism networks indicated:
After we shared this feedback with govt and PAFC’s principals, we were excluded from further community discussions as project development got underway.
In 2010, we received internal Govt documents about PAFC. After extensive further research & advice, we issued a statement noting information given to families during PAFC’s provincial consultations was not consistent with plans that government was discussing internally. Of particular concern were plans to use existing autism program budgets to subsidize PAFC’s operating costs. Ministry officials warned this would reduce access & effectiveness & increase waitlists for diagnosis, for example.
We acknowledged different views within our community and encouraged families to share their views with Govt. We remained concerned that PAFC’s development process was ignoring key concerns, that the Province had never clearly stated its objectives or intentions, and that Government has never consulted with families, service providers or professionals on PAFC or on how best to spend new autism dollars. Still, when the former premier announced a site for PAFC at a recent media event, he claimed broad community support for a project that would serve the needs of children with ASD.
COMMUNITY VIEWS:
MOMS and other groups responded to the former Premier's claims by reiterating the concerns, noting that neither the Province nor PAFC has ever shown how investing $20 million to help construct a new building for PAFC addresses the priority needs we hear from families. MOMS urged the Province to listen directly to families to determine priority needs and to invest the promised funds directly on identified gaps and deficiencies, whether in new or existing programs.
1. BCACDI position: BCACDI called for a needs assessment, pointed out that the Province has never consulted publicly, and urged that new capital and operating dollars directly target gaps in existing community-based provincial early intervention services.
Two autism groups on PAFC’s advisory committee have rejected BCACDI’s call for government to consult directly and for an objective needs assessment to determine how best to spend available funds. Their full positions are linked below, but in essense, PAFC supporters are saying:
2. ACT position: The non-profit agency contracted by MCFD to provide family support and a service provider registry wrote to BCACDI, copying the new Premier and MCFD Minister. ACT dismissed the family concerns conveyed by MOMS as “rants” and “polemics” driven by Dawn Steele’s “fervent hostility to the current government,” suggested BCACDI was misinformed, and urged support for investing in the PAFC facility as the best way to address autism needs.
3. MOMS response to ACT and the Premier supported calls for an objective needs assessment as a good way to determine priority needs and what families really want.
4. FAIR position: The Victoria-based family group formed to fight the closure of EIBI programs also rejected BCACDI’s call for a review. FAIR, calling itself the largest autism organization in BC with 1,400 Facebook members, urged support for the Province’s capital investment in PAFC.
(We’ve reminded FAIR that most of their Facebook friends are actually supporters from outside the autism community, and that joining a FB page in solidarity with a few dozen families fighting to save their kids EIBI programs in 2009, as we did, is not a blanket endorsement of any future position that FAIR’s families may take on other issues, especially one this controversial!)
WHAT DO YOU THINK?
As always, we encourage groups and families to share their views with us and/or with ACT, FAIR and directly with government.
There is nothing wrong with being direct and expressing views strongly but we do urge that comments are respectful of other individuals and diverse views and focussed on the issues (vs personal attacks): i.e. identifying what you see as the priority needs of families and what is the best use of scarce Provincial dollars to address those needs.
Dawn & Cyndi, MOMS
]]>No needs assessment
The Premier's commitment was made with no public consultation with families or professionals, no needs assessment, no competitive bidding and no public policy rationale offered by any provincial ministry. The promised provincial funding applies to construction costs only. Proponents have cited a long list of possible improvements to services in promoting the project. What they have not mentioned is that there is no funding to any of those things. Any of the centre's activities would have to be funded privately or by diverting funds from existing programs. The foundation promises to raise $14 million with the help of major supporters like the Canucks and other sports teams to help cover construction costs, but the total raised so far was not revealed.
The Province has to date never consulted with families or professionals, instead advising stakeholders to work with the PAFC proponents, whom the Province has charged with developing plans for the new centre. The strategic plan for PAFC would see the centre taking over responsibility for all autism services currently managed by the Ministries of Children, Health, Education and CLBC.
Plan would rob existing progams
The proponents continue to suggest that existing funding commitments would cover the centre's operating costs, but leaked Ministry briefing documents outlined plans under discussion to transfer existing autism program budgets (POPARD, ACT and BCAAN - the currently decentralized provincial autism assessment and diagnostic network) to PAFC to help cover its operating costs. Ministry staff warned that PAFC would not fit with the BCAAN program delivery models (both BCAAN and POPARD serve professionals, not families, via decentralized outreach models) and that the move would erode existing services, lengthening waitlists for children. But they nevertheless advised that senior Ministry staff participate in helping the proponents shape the PAFC business plan, since it would be happening anyway.
Just two weeks ago, top-level MCFD staff responsible for services for children and youth with special needs assured MOMS and other stakeholders in a provincial conference call that to their knowledge the PAFC proposal had been put on hold. But other reports indicate that Campbell personally continued to advance the project outside of regular ministry channels, making it clear to high-level ministry staff that they needed to be ready for him to make a formal project announcement before he left office.
Residential question
The promised $20 million capital funding, along with project development support (well over $1 million to date) has been financed from the budget for BC Housing,
whose mandate it is to provide housing for BC residents who have difficulty accessing safe and affordable housing. The residential component was dropped from the strategic plan following an outcry from families, but it remains unclear how BC Housing could justify to the Auditor General such a signifinant investment in a non-residential project if that is indeed the intent.
At Monday's press conference, the Premier praised the efforts of the Cocchia and Aquilini families heading the project (the Aquilinis also just donated $60,000 to the recent BC Liberal leadership campaigns, $25,000 of which went to incoming Premier Christy Clark). Premier Campbell added that the proposed centre had Ms. Clark's full support. No details were provided about how the center's operating costs would be funded, how much responsibility it would be given to take over delivery of existing provincial autism services, who would control the new centre, or how investing $20 million in another "bricks and mortar" Vancouver mega-project would better serve children with autism and their families across the province.
Governance
Given how much is at stake (and deep-seated traditional rivalries among BC's autism community groups) governance of the project remains a key question. To date, governance of the project development process has been assigned to PAFC, with support from key ministry bureaucrats and hand-picked community advisors, who meet behind closed doors, with no public reporting requirements.
Media were not allowed to ask questions at Monday's annuncements but were assured that the proposed centre enjoyed wide support from professionals and families. The director of ACT, Deborah Pugh, and the head of the Autism Society of BC, Michael Lewis, were on hand in a presumed show of support, along with ABA specialist Dr Glen Davies.
MOMS has repeatedly questioned the rationale for spending $20 million in scarce public funding on bricks and mortar, instead of investing in actual services, training etc delivered through traditional decentralized models that would equally benefit families outside of Vancouver. A survey of over 500 families in 2008 showed most would rather see the province invest in improving both the quality and quantity of existing services, not in constructing new buildings. Our concerns, along with those of other autism family groups from outside the Lower Mainland who have also challenged the plans, have been dismissed and critics shut out from the planning process.
This week, the BC Association for Community Living was among the groups, families and organizations who echoed many of our concerns around this project.
As BC's incoming premier Christy Clark secured a mandate over the weekend on promises of "change" and putting "families first," the first order of business on Monday seemed to be - well, business and politics as usual. Only time will tell whether the incoming Premier, who has promised to be a better listener than her former boss, will follow through on her commitments by demanding a full needs assessment and independent consultations with families and autism experts before deciding whether or not to break with Premier Campbell's final legacy.
Dawn & Cyndi, MOMS
MOMS Open Letter: Important questions re service plans for children with autism and other disabilities in BC
October 7, 2010
MOMS has recently been asked to circulate notices from provincial gov't officials and a private consulting firm about consultations (focus groups, advisory bodies and an online survey) to guide the development of the Pacific Autism Family Centre (PAFC), described by its proponents as a "community-driven" initiative to establish a "knowledge centre assessible to all British Columbians affected by Autism Spectrum Disorder and other developmental disabilities."
Having confirmed that these consultations are not being conducted under the auspices of MCFD or the provincial government, MOMS has advised MCFD that we would only support and participate in official Ministry consultations governed by provincial requirements for accountability, due process and transparency.
The purpose of PACF and how the Province plans to utilize it to change the way children with special needs and their families are served in BC are questions whose answers continue to be vague, contradictory and ever-shifting. MOMS now has important new details, based on internal government discussions which highlight disturbing contradictions. Below, we've attempted to sum up key issues in the hope of persuading the Provincial government to establish a more transparent context for evaluating and offering advice on this plan than has been the case to date.
Background: In the 2008 Throne Speech, Premier Campbell committed at least $20 million in provincial dollars to build a "centre for autism education and research" that will "provide a residential environment for children with autism." He asked his friends, Sergio and Wendy Cocchia, to flesh out a proposal which they had been trying to pitch to various Ministries for years, which involved their taking over the Sunny Hill Hospital property to build an autism centre as a public/private initiative. After a rocky public unveiling of their plans that summer, further planning continued underground, with strict confidentiality rules for participants. In April 2009, the Premier reiterated his intentions, stating: "We are developing a new Centre for Autism Education and Research that will provide a residential environment for children with autism and create a national hub for research and a centre for parental supports." Nothing further was made public until the proponent's recently-announced provincial consultations.
Contradiction #1: Recent public statements from Ministry staff and proponents suggest planning is still in the very early stages & nothing yet approved. But individuals invited to participate in planning groups were assured since 2008 that the proposed centre was a "done deal." MOMS has received internal documents confirming that Minister Polak formally committed almost a year ago to advancing a joint proposal with the Ministry of Housing to secure project funding for PAFC. The Premier tagged BC Housing to provide the $20 million or more in promised capital funding and that agency has already paid out over $500,000 to cover the proponents' project development costs. Senior government staff from several ministries have also been assigned to help the proponents develop a business plan. Government has also granted approval in principle to lease the Sunny Hill Hospital site for the proposed centre and expects construction to start in 2012/13.
Contradiction #2: Earlier announcements indicated the province's contribution was limited to capital funding and that the centre would be self-sustaining, with private fundraising significantly leveraging the benefits of the initial public investment. But internal documents show that top provincial officials have been seriously discussing diverting funding from existing autism programs (BCAAN - diagnosis & assessment, POPARD - education support and ACT - family support) to subsidize PAFC's expected operating costs. Despite being warned by staff that this would reduce capacity to deliver critical front-line services and increase waitlists, and that the proposed centre did not fit the existing programs' delivery models, official documents reflect Ministers Polak and Coleman's intentions to proceed this fall by submitting a joint proposal to Treasury Board to formally secure the capital and operating funding for PAFC.
Contradiction #3: The premier's official statements have consistently reflected his intention to build a *residential* facility. Although a residential school was the initial premise for PAFC, its proponents have repeatedly assured concerned families and community leaders that's no longer the plan. BC Housing's mandate is "to assist British Columbians in greatest need of affordable housing," so it is not clear how allocating $20 million to build a non-residential "knowledge centre," as the proponents now describe PACF in their consultation literature, would be consistent with that mandate. It is also not clear how the premier's single-sourced PAFC initiative would be consistent with principles of sound financial management and planning. Minister Coleman has suggested the centre could include respite facilities and the proponents propose including housing for families visiting the centre from out of town, though it's not clear how either could be considered BC Housing priorities.
Contradiction #4: The PAFC concept has been revised numerous times. Earlier versions included plans for a provincial model school, a residential school and a centre where children with autism could access therapy, learning and recreational activities, safe from the outside world, complete with swimming pool, baseball diamond, bowling alley, spa and cafeteria. The concept was refined by a planning group in fall 2008, resulting in a Strategic Plan that was never made public, but that was the basis for the province subsequently agreeing to move forward with funding for project development.
Public consultation documents now describe the facility as a "knowledge centre" focussed on training and research and operating a hub-and-spoke service model so that families across the province can fully benefit. The latter attempts to respond to widespread concerns that a Vancouver-based centre would offer little to the vast majority of families outside Vancouver. However, the Strategic Plan and other confidential documents reflect plans for an extensive multi-purpose campus with facilities to accommodate no less than 43 different functions and activities, ranging from games and fitness rooms to classrooms, computer labs, medical centre, treatment centre, music/art therapy rooms, aquatic therapy/pool, offices, cafeteria, 2 and 3 bedroom residences, auditorium, gymnasium, etc. Most of the proposed facilities that the province would actually be financing through its $20 million capital contribution (recreational, therapy, classrooms, respite/daycare, vocational training, library, family space, playgrounds, calm-down rooms) would be similar to those available at a local school and would not be available to families outside Vancouver.
The documents also indicate that PAFC hopes to be doing far more than sharing knowledge. At the centre of the campus is the knowledge centre, from where, according to PAFC's Strategic Plan, "we will coordinate Autism services for families throughout BC." As noted above, Ministry documents indicate this would include diagnosis and assessment, treatment (ABA, OT, music/art therapy), special education, and family support. PAFC's plans additionally list responsibilities as including professional development, day care, research, vocational and post-secondary education. This would represent another radical shift, after the Province has barely finished transfering responsibility for all services for children & youth with special needs back from CLBC to MCFD, and creating new Regional MCFD teams of staff assigned to work with families locally to provide supports and coordinate access to various programs, including autism services.
Contradiction #5: The Premier's announcement and subsequent plans described this as an autism initiative. But that may have changed after the project hit some road blocks in the past year. After Ministry staff and clinicians warned that programs like BCAAN (diagnosis) were best left integrated with parallel services for other developmental disabilities, the PAFC concept was revised again to include those responsibilities as well, along with some adult services.
Such cross-disability integration could fit with a key Provincial commitment under the "Strong, Safe & Supported" action plan guiding broader changes already underway at MCFD. Pillar #3 of that plan calls for expanding access to early intervention to children with other disabilities, by developing new eligibility criteria based on a functional assessment of individual need (i.e. instead of automatic access to a fixed therapy allowance just for those with an ASD diagnosis). Most agree that it is unfair to deny access based on diagnosis alone. But if existing ASD programs are simply extended to serve a wider population in the current budget-neutral context (i.e. without injecting significant new funding), it raises the alarming prospect of significantly-reduced eligibility and access for children with ASD.
A recently-leaked ministry briefing note indicated that provincial officials were developing exactly such a plan, complete with plans to find extensive savings by reassessing all children who currently receive autism services and utilizing waitlists to manage future demand. Ministry staff immediately refuted the document as phony, but neither staff or the Minister have offered any public assurances denying that children with autism would experience a significant reduction in current funding levels for treatment and support as these plans move forward.
Exactly such a process is already underway under Coleman's direction at CLBC, with clients being reassessed and current adult budgets being reallocated to meet new demands, leading to growing alarm over forced relocations and individual service reductions (a direct betrayal of Coleman's promises made just months ago). And if current autism program budgets are to be spread even further to cover PAFC's operating expenses and new mandates, it would further reduce access to core services for assessment, early intervention and support.
Contradiction #6: It is widely agreed that community-based family supports and services, organized and delivered via local programs, are more effective and more adaptable to unique local needs. Provincial offices can provide training, support and coordination. Such "hub and spoke" models were used to successfully operate the Province's IDP, AIDP and SCD programs for many years. In 2009, Minister Polak eliminated the provincial offices for all three programs, arguing that they were not needed and that this would direct more dollars to front-line services. It's not clear, therefore, why she has taken the exact opposite approach with autism services, by closing community-based autism treatment programs and supporting the investment of tens of millions instead in a new provincial centre to provide training, support and coordination - the very role she said was wasteful for other early intervention programs.
Contradiction #7: Proponents also tout PAFC as a vehicle for better integrating services, leveraging external funds, and giving families more control, thereby improving outcomes and quality of life. These exact same claims fuelled the creation of CLBC to manage services for adults with disabilities. But most would agree that CLBC's creation has only intensified the crisis in adult services, increasing stresses and bureaucratic costs, reducing accountability and giving families less say, not more. The external funding that was to be leveraged to support CLBC's operations and expand access never materialized, with budget pressures greater than ever. And there's no reason to doubt that raising the millions required annually to make any difference in the level of services available for children with autism will be even more challenging in the foreseeable future. Like CLBC, the minister and bureaucrats who control the budget will therefore control all decision-making, regardless of what governance structure is chosen and who nominally manages to assume control of PAFC.
MOMS position: When MCFD staff asked us to support PAFC's consultations in June, we advised the Ministry that earlier feedback from families in our provincial network indicated very little support for a $20 million Vancouver-based facility when front-line autism services were being cut or underfunded. Further, we noted that families overwhelmingly expressed preference for local, community-based models for delivering autism services and supports over centralized mega-projects.
We would support provincially-funded programs to support training and research, but we don't believe that requires taking over Sunny Hill and constructing a new $30 - 35 million facility. Such programs are also best designed, planned and managed by those with the appropriate expertise in training, education and research, with appropriate guidance from government and the broader community. Shortages of trained providers won't be resolved by investing in training alone as there are other, often complex, structural obstacles (e.g. low pay rates and/or high caseloads leading to high staff turnover, provincial contracts or regulations and economies of scale in small rural communities).
We believe any provincial funds available to support children with autism and their families would be most effective if invested in expanding access to existing programs, not capital facilities. The primary challenges facing families of children with autism don't stem from a lack of knowledge or autism research, but rather from insuffient investment in applying that knowledge via effective treatment and support programs, organized in ways that support retention of qualified staff, community/family-centred delivery and in sufficient intensity to produce the desired results.
We believe diagnosis and assessment is best delivered locally, via professionals with the appropriate expertise, under the decentralized health care model. Likewise a provincial family support/ treatment centre is not the right vehicle to manage or deliver K-12 staff training and support, which needs to be able to work through the local public school bureaucracies if it is to effectively change classroom practices.
MOMS also supports the province's intention of improving cross-ministry integration to facilitate more seamless service delivery, though delegating responsibility for serving or for coordinating services for children with autism and other developmental disabilities to a Vancouver-based public-private partnership without clear lines of public accountability is not an effective way to achieve that, in our view.
We don't profess to have all the right answers or to speak for everyone. So in June, we stressed to MCFD staff that the Ministry itself has the responsibility to conduct consultations on community priorities to guide provincial autism policy and decisions about how to spend any public funds available through MCFD. It is not consistent with principles of responsible governance for the Minister to delegate that responsibility to a private consulting firm or group that is seeking to rally public support for a private proposal. That presents a major conflict of interest & precludes public confidence that the resulting advice is objective and truly reflective of community priorities. We offered to test these questions with the Office of the provincial Auditor General if Ministry staff were uncertain.
We were therefore pleased to learn recently that MCFD is now working to establish a multi-stakeholder advisory group to advise government directly on autism policy development. We look forward to the establishment of a group or process that respects key principles of responsible governance, that includes relevant expertise and that has the broad confidence of the relevant community, to advise MCFD and the province on community priorities and how best to allocate public funding to meet the needs of all individuals with ASD and other disabilities across the province and their families.
We are calling on Premier Campbell and Ministers Polak and Coleman to:
1) Immediately address the contradictions noted above and to clarify the status of the Province's planning and intentions around this project.
2) Cancel any further provincial funding and technical support for PAFC until the Ministry's own consultations demonstrate whether this project is consistent with province-wide community priorities for improving services and supports, as demonstrated through open, objective and transparent Ministry consultations.
3) Commit to families that there will be no reduction of current eligibility or access to autism services for children, youth or adults with ASD and their families.
4) Before allocating any further provincial capital or operating funding to PAFC, commit the new Provincial dollars required to expand eligibility and access to early intervention and family support services for children and youths with other developmental disabilities based on individual need, as specified under Pillar #3 of the 'Strong, Safe and Supported' Ministry Action Plan, and without any forced reduction in current access or eligibility for individuals with autism.
We urge BC families and community groups to consider these questions and to share their own views with the Premier, Ministers Polak and Coleman, Opposition Critics, the Representative for Children and Youth and local MLAs, contacts for whom can be found on our website here: http://momsnetwork.ca/resources-and-links/
Dawn & Cyndi, MOMS
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