MOMS Open Letter: Questions re service plans for children with special needs
The following is an open letter that MOMS sent today to the Premier and Ministers Coleman and Polak, with copies distributed widely. We encourage families and other stakeholders to share their own views on this issue directly with the Ministers responsible and their MLAs:
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