A family divided?

Earlier, we exclusively told you about Sergio and Wendy Cocchia's efforts to develop the government's promised autism education and research centre. But not everyone is supportive of those efforts. In an open letter to Premier Gordon Campbell, Moms on the Move reported that parents surveyed using an informal Web questionnaire had "serious concerns about the process and parameters" used to "notionally" allocated $20 million in government funding toward the centre. But the Autism Community Training Society has conducted it's own consultations with "key individuals in the autism community" and found "the general response to the prospect of having an Autism Centre for B.C. was positive. The general sentiment was that this was an exciting project with enormous potential to improve the situation for families and individuals with autism of all ages." The following is a complete copy of both documents.

July 29, 2008

Hon. Gordon Campbell,
Premier, British Columbia
Victoria, BC

Dear Premier,

Moms on the Move is a volunteer parent network that provides information, advocacy and support to families of people with autism and other special needs. Our provincial parent network reaches over 1,000 BC families, professionals, service providers and others.

Our families describe extraordinary hardship due to underfunding and major provincial service gaps for people of all ages with special needs, such as waitlists, supports denied to adults with autism or FASD and IQ over 70, no early intervention therapy for diagnoses other than autism, inadequate services in rural areas and schools and lack of support for families trying to care for challenging children.

On July 24th, we were invited with other autism community leaders to a private consultation meeting at the Century Plaza Hotel in Vancouver. We were delighted to learn there that you had personally committed $20 million in new provincial funding for autism in 2008-09.

Our meeting hosts outlined plans for a new provincial autism family centre in the Lower Mainland, with the $20 million directed to construct a new high-tech building that could house research, treatment, residential facilities, training and outreach. We were told the facilities would include a swimming pool, sports centre and playing fields for children with autism. The proponents, parents of a child with autism, sought input and support regarding proposed activities and governance for the new centre. They noted their intention to hand over management of the facility to the community once it was built. Other points noted:

* The proposal is being developed at the Premier's request. He personally called proponents before the 2008 Throne Speech to give a “heads up' that funding was approved.

* The Premier invited proponents to meet him after the Throne Speech and requested a formal proposal for one-time capital funding of $20 million for a building to house a provincial autism centre.

* Proponents don't know which Ministry budget is funding this. A Board was established, consultants engaged, private fundraising is underway and private community consultations initiated to flesh out the proposal, all based on the Premier's personal 'commitment' to proponents.

* Proponents not aware of a competitive process or competing proposals for allocating the $20 million.

* Proponents cite the following criteria specified by the Premier for spending the $20 million:

* Funds can only be spent on a building. Suggestions that funds might be better spent on enhancing existing services or programs can therefore not be entertained.

* Government won't fund operating costs for any proposed activities or services at the new centre. Such activities must be funded from existing budgets or through private fundraising.

* Private fundraising needed to supplement the $34 million cost of the proposed building.

* The new provincial centre is to be located somewhere in the lower mainland, possibly at SFU.

* Formal proposal must be submitted by fall 2008, with groundbreaking before spring 2009, or the Premier's $20 million 'commitment' will expire.

* No needs assessment done. Proponents have long been lobbying the premier to fund such a centre.

* Proponents know of no public consultations conducted/ planned by government to ensure the $20 million is spent in the public interest. Proponents are arranging their own consultations.

Provincial autism policy in BC falls under the Ministry for Children and Families. There is no reference to a new provincial autism centre as a priority in any publicly-available Ministry documents, including the Ministry's service plans or the new Ministry action plan. BC Budget documents on the Finance Ministry Website contain no reference to funding an autism centre. The Minister responsible did not mention these plans in the spring 2008 Estimates debates. Ministry staff was not available at the July 24 consultation to answer questions. Government's only public reference to this initiative to date was a sentence in the Throne Speech.

At the July 24th meeting, we agreed to a suggestion to use the MOMS network, as the province's largest autism/special needs parent network, to help gather feedback on this proposal. We developed and distributed an informal Web questionnaire through provincial networks to assess parent views and priorities. Preliminary results (attached) indicate that families have serious concerns about the process and parameters that you established for allocating those funds. Key concerns include the following:

* Why spend $20 on a new building instead of on programs and services? (Why not use some of the hundreds of under-utilized public schools in BC instead? Why not instead help people in dire need because of your decision to deny services based on IQ over 70?). Only 4% (8 of 226) respondents so far think a new building is a priority for new spending.

* Why more facilities in the lower mainland, where most existing expertise/services are concentrated, instead of targeting outlying communities that suffer limited expertise and services? Respondents favour more services delivered locally to a new provincial centre of excellence by a majority of 92:8.

* Why more resources for autism only vs. supporting all children with special needs that could benefit from intervention therapies? Many existing autism programs would greatly benefit children with other special needs who are currently denied access. A majority of respondents (57%), most of whom were families of children with autism, would prefer to see the money going to both autism and others.

* Why are plans being developed outside the normal policy processes, with single-source procurement and no broad community/family engagement? 83% of respondents would prefer spending decisions made by the Minister responsible, in full consultation with families, professionals and providers. 96% believe funds would be spent more effectively following an open and transparent competitive bidding process and evaluation of proposals by a representative panel of community members.

Information provided to date raises questions about process and whether this is the best way to serve the public interest. It's not clear why a significant sum of public dollars would be “committed' in the manner described - i.e. outside the Ministry's special needs/autism policy structure, provincial procurement policy, and with no public consultation or needs assessment. We therefore ask for an immediate clarification re your role as Premier in allocating these funds and setting project parameters. It would also be helpful for the MCFD Minister to provide a public explanation regarding the Ministry's role and responsibilities.

In closing, we wish to stress that notwithstanding the above questions, we applaud the news of your government's commitment of $20 million in new funding to serving vulnerable children. We offer our full support to assisting the Minister responsible to ensure these funds are targeted at the most urgent needs, in a manner consistent with the public interest. We propose that this requires starting afresh, with full and inclusive community consultation conducted by a neutral party to review existing parameters, and with an open, fair and transparent decision-making process to ensure these public funds are well spent.

We look forward to your prompt reply.

Dawn Steele & Cyndi Gerlach

Moms on the Move

CC: Minister Tom Christensen; Representative for Children & Youth Mary Ellen Turpel Lafond, MOMS

***

Pacific Autism Centre-
An Autism Knowledge Centre
For British Columbia

Report on a Preliminary
Community Consultation

Prepared by ACT - Autism Community Training
July 9, 2008

Report on Preliminary Community Consultation

Introduction

In June 2008, ACT - Autism Community Training Society received a request to contribute to plans for the development of the Pacific Autism Centre. In particular, ACT was asked to help in the development of a community consultation process to ensure that the proposal currently being developed for the Centre by the Pacific Autism Centre Society reflects parental and professional interests and priorities.

After consulting ACT's Board of Directors, Clair Schuman, Executive Director, and Deborah Pugh, Director Research & Training, began an intensive process of consultations, contacting key individuals in the autism community in British Columbia by telephone and in face to face meetings. Most of these individuals are parents/professionals who have worked collaboratively with ACT in the past and include many of the leaders in autism treatment, research, information and parent support, training and diagnosis in B.C. Below are the key themes that emerged from these informal conversations.

In addition, ACT has facilitated a meeting between Simon Fraser University and Sergio Cocchia, board member of the Pacific Autism Centre Society with the purpose of encouraging a discussion of a partnership to develop the proposed Centre as a centre for autism research, in addition to treatment and family support.

Context: Individuals Impacted by ASD, and their families, in B.C.

* British Columbia, in common with the rest of North America, is experiencing a dramatic increase in the incidence of autism; what was once a relatively rare condition is now being diagnosed in 1 in 150 births. Autism Spectrum Disorder (ASD) is now more common than Down Syndrome, Cerebral Palsy or Childhood Cancer. While it is a diagnosis made by the medical community, its treatment is primarily within the educational model, i.e., therapeutic instruction rather than medication. However, understanding and treating ASD requires a host of disciplines; medical professionals are key to the treatment team in part because of the high incidence of co-morbid disorders including depression and anxiety.
* In the last decade research has indicated that early intervention is essential for children to overcome the worst effects of ASD. Therapies based on Applied Behavior Analysis, in combination with Speech Language and Occupational Therapy are having a significant positive impact. Children and their families are clearly benefiting when they have access to high quality intensive intervention.
* A cure is still not available; however, individualized intensive treatment can offer significant positive outcomes for the child with ASD and their family. Moreover, such treatment brings down the burden to the taxpayer of institutional care for adults with ASD.
* As of January 2008 there are over 5,000 children diagnosed with ASD in B.C. who are receiving autism treatment funding from the Ministry of Children and Family Development. Currently, millions of dollars are spent annually on autism funding for children with ASD.
* Most parents are highly motivated to provide their child with ASD with treatment. While children with ASD are highly individual those who remain untreated or whose treatment is substandard, or those who are particularly complex, often demonstrate challenging behaviors which can lead to severe isolation for their families.
* While families impacted by poverty, ESL issues or disabling conditions affecting the parents are particularly vulnerable, recent research has demonstrated that ASD impacts families economically in terms of their ability to work and contribute to society, whatever their social class: "We found that 39% of parents of children with diagnosed ASD reported that, in the previous year, someone in the family had quit a job, not taken a job, or greatly changed a job because of child care problems related to the child with ASD. These findings were substantiated in multivariate analyses controlling for several potentially confounding variables. In fact, the size of the effect was 3 times larger than the effect of poverty, suggesting that having a child with ASD may be the most important risk factor for child care problems affecting employment among these families. http://pediatrics.aappublications.org/cgi/content/full/122/1/e202
* Parents of pre-school children with ASD in B.C. bear a particularly heavy burden because in most cases the expectation of them is that they will run in-home treatment programs for their children.
* They report that they urgently require access to flexible learning opportunities, accessible from their own communities if they are to better understand how to set up the treatment teams their children need. Professionals share their concerns.
* The challenge for parents is exacerbated because while they have access to funding, there are chronic shortages of behavior consultants, speech-language pathologists, and behavior interventionists - especially outside of Metro Vancouver. For a perspective on the lives of families see the Vancouver Sun's Faces of Autism series at www.actcommunity.net/news/news_2007Award.htm.
* In addition, many families who have access to Autism Funding report that funding is insufficient to run the type of intensive program that researchers endorse. The expectation that they supplement the government funding with family resources cannot be met and they worry that their child is going without vital treatment.
* A challenge for B.C. is to make treatment informed by research generally accessible across the province. (For a federal report on a recent Canadian symposium on autism see www.cihr-irsc.gc.ca/e/36237.html - in particular section 3.1 on knowledge translation.)
* ACT manages the Registry of Autism Service Providers (RASP) on behalf of the Ministry of Children & Family Development (MCFD). ACT is working to strengthen standards of treatment for children with ASD but has no role in monitoring the quality of service that children are actually receiving although it does manage a complaints resolution process for families.

The Initial Consultation Process: June 25 - July 8, 2008
Subject of Consultation

ACT staff began by communicating with as many key members of the autism community, both professionals and parents, as were available. (See Appendix A) They shared the broad outline of the project as described to ACT by Sergio Cocchia. As ACT's staff understands the project, this is envisioned as a centre that:

* Will provide services to individuals with ASD across the age span;
* Will have a swimming pool, playing fields and a gymnasium;
* Make available direct therapies including Speech, OT, Music and Play Therapy.
* Offer respite facilities to families;
* Provide economical accommodation to families visiting Metro Vancouver for consultation;
* Provide a teaching facility for young adults preparing for the workforce;
* There would be a lecture hall and classrooms with the technological capacity to be linked with the rest of the province.

Those consulted were asked or encouraged to respond in these broad areas:
1. What they thought of the idea of an Autism Centre;
2. What should be included;
3. What should be avoided:
4. Whether they would be interested in engaging in the further consultation in the development of the Centre.

Responses to Consultation
1. Responses to the Idea of an Autism Centre for British Columbia
* The general response to the prospect of having an Autism Centre for B.C. was strongly positive. The general sentiment was that this was an exciting project with enormous potential to improve the situation for families and individuals with autism of all ages.
* There was endorsement of the decision of the ACT Board to facilitate the community consultation process.
* However, there was a sense of caution that the Centre needed to respond to provincial needs and priorities of families and not just to those who live in Metro Vancouver.
* There was also a general sense that some of the facilities envisioned, including swimming pool, gymnasium & sports fields should be seen as a means to train community paraprofessionals from across B.C. in working with children with ASD - inclusion of children and adults with ASD in their local communities with trained supports should be the goal.

2. Advice on What Should be Included
* The development of an overarching vision for the centre that the autism community could buy into was thought to be important by many.
* A strong link with research - collaboration with researchers across the province, in particular with UBC, Capilano University and Douglas College was urged by those contacted but also that national connections should be cultivated. The prospect of this Centre having a strong relationship with the new Chair in Autism Treatment at Simon Fraser University was supported. There was the sense that having this link would protect the Centre from pressure to run programs that do not have a strong foundation in best practices in autism treatment.
* Support for this being a centre for diagnosis, to meet the current shortfall in diagnostic capacity but also to provide a centre for training of diagnosticians.
* There was support for a program housed at the centre that would provide intensive training/orientation for families of the newly diagnosed. Particularly for those families living in isolated areas of the province so that they could return to their communities with basic skills & understanding. These should be informed by international best practices and connected with research so as to ensure that funding is being well spent.
* A valuable role of a Centre would be to develop initial treatment programs and provide an on-going monitoring role. Not for every child but as a means of setting standards for treatment provincially. This could begin with treatment planning for the newly diagnosed child involving disciplines relevant to the child's age and functioning, including a behavior consultant, speech & occupational therapy with input from medical specialists when needed. This would be part of a provincial training and mentoring function to develop autism treatment capacity outside of Metro Vancouver - ultimately it could act as a hub.
* The Centre should offer on-going consultative support for families and professionals outside of Metro Vancouver using a variety of means including video conferencing & webcasting as developed with the tele-health initiative.
* The Centre should address issues across the age range in recognition that children grow up:
* A pre-school program was seen as a positive initiative, especially if the centre can be located in an underserved area and be connected with research to benefit programs elsewhere in the province. Hope was that it could be a place where professionals and para-professionals could receive further training.
* Hope that high functioning young children and youth with ASD could have access to social skills development & employment opportunities. Currently, these young people have limited access to supports at 19 if their IQ is 70 or over, regardless of their functional ability.
* There was strong support for the centre providing education & training for young adults with ASD who need support preparing for the workforce. The idea being that these ideas could then be replicated in other interested institutions in B.C. and that they should be informed by the best programs internationally and be connected to the research agenda.

3. What Should be Avoided
* Avoid any residential component for children or adults. Those consulted were strongly opposed to any residential programs, unless it was for a fixed period for imparting specific skill sets such as employment readiness skills training for young adults.
* Agreement that this should not be the site of a school for children with ASD.
* Provide direct service but in the context also of training. Concern that professionals would be pulled out of one venue to relocate to the Centre. Those consulted spoke of the overall shortages of professionals and thought the thrust should be for government to encourage UBC/SFU to graduate increased numbers of SLP's, OT, Behavior Consultants and teachers with Special Education qualifications and for the center to act as a venue for supervised practical experience, not only direct service.
* Avoid any duplication of programs and services that are currently being successfully operated by other organizations and are available.

4. Whether they would be interested in engaging in the process of consultation in the development of the Centre.
* All of those contacted were prepared to engage in the consultative & planning process.
* There were concerns over the tight timelines.
* There was a general hope that the proposal due to be ready in September could remain broad in scope to enable focus groups to be established on specific components of the Centre following submission of the proposal.
* Agreement that it would be important to contact similar centres in the US to exchange ideas and review operational models.
* Many of those consulted agreed that there was a need for face to face discussion where a mission statement or statement of purpose could be endorsed prior to the proposal being finalized. Following acceptance of the proposal, further public input could be sought. This would prevent considerable time being spent at a larger meeting on the perceived merits of programs and/or methods that have little or no promising empirical evidence of efficacy in autism treatment.

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