While families plead for help, BC govt, community leaders mull $34M building

Rooftop gardens, north shore mountain views, i-Pad equipped waiting rooms, lifespan centre, subtle colours, cutting-edge technology & much, much more...courtesy of your tax dollars

The Pacific Autism Family Centre initiative has started to publish minutes of its advisory council meetings for those interested in following the progress of this inititiative: Read them here .  After reading the minutes of their April 15 Advisory Council meeting, some comments and questions come to mind:

1) Priorities: With all due respect to well-meaning friends and colleagues, desperate families around BC are pleading with government to address the funding crisis that is tearing apart families, destroying hope and creating enormous risks. So why are autism "community leaders" and professionals sitting around discussing spending $20 million in scarce tax dollars on rooftop gardens, north shore views and i-Pad equipped waiting rooms??

If Premier Christy Clark really wants to put families first, why isn't anyone asking why she is spending $20 million on a vanity project for wealthy political contributors while telling families there is no money available to provide vital services or to respond to the crisis??

2) Participants: The list of attendees at PAFC's recent meeting includes a who's-who of the Lower Mainland autism/ABA establishment, but very few from outside the Lr Mainland, except Autism Kamloops. There were also no professionals who deliver non-ABA treatment and no BCACDI members, who deliver many autism supports/services in outlying communities.

While the Premier and her Ministers keep telling us this is not their baby, but a "community-driven" initiative , the whole agenda is very clearly being driven by senior ministry staff (Karen Bopp, Ian Brethour) and their ministry-funded consultants. The minutes indicate that invitees are basically just being asked to shape and endorse the cosmetic aspects of core decisions that have been politically-driven from Day 1, and from no less lofty a source than the Premier's Office.

MOMS was asked to participate and we have declined until the province is willing to debate the fundamental premise of investing in a costly building instead of re-directing any available dollars to the urgent needs that families around the province have indentified, both in our polling and in PAFC's own consultations.

3) Elephant on the table: After MOMS published leaked ministry documents in March, the Minister wrote us insisting that this project would not impact funding for existing autism services (and conversely, would not fix any of the serious funding gaps for those services!). She reiterated what we had been told in an earlier letter from Minister Rich Coleman , who said government has committed capital funding (i.e. construction costs, not ongoing program/operating expenses) for the building to be constructed in East Vancouver.

The April 15 PAFC meeting discussed PAFC's recent consultations (which were run by Ministry consultants and which highlighted gaps in program/operating funding for services across the province as families' top concern). The meeting also included an update on the East Van building design. The elephant on the table, which no one at the meeting seems to have addressed, is how government's $20 million capital investment to build the East Van building addresses any of the major concerns that PAFC identified in its own consultations?

This continues to represent the fundamental flaw in this project. Premier Christy Clark remains committed to giving away $20 million to a politically-connected group for a capital project that does nothing to fix the priorities and concerns that families have identified across the province. We will continue to ask that question until someone can show us how constructing a $34 million high-tech building in East Van helps families in Cranbrook, Fort St John or Parksville who can't get the support and therapy their kids need every day in their own communities? Or how a perfectly-designed therapy room with a delightful view of the north shore mountains helps the family next door who can't afford the therapy itself??

4) Hub and spoke model: A good part of the meeting was devoted to discussing the role of volunteer community advocates in towns like Kamloops, and the support they provide for families locally. There appears to be much interest in PAFC taking over and beefing up this role, to address the complaint that what families need is local program support, not a Vancouver building. It was even suggested that PAFC go ahead and implement this "spoke" component of a hub and spoke model before constructing the East Van building.

Now it would be great to retire and have a program that provided paid professionals to take over the support role that we and other families have been struggling to offer on a volunteer basis over the years (e.g. the amazing work done by Betty Ann in Kamloops, Karen in the Fraser Valley, John Tsang with the Chinese speaking parents, Rachelle and Yuko with the transition families, local FSI reps, Chris in Victoria, or the ABA Support Network/FEAT families provide in their respective communities).

Maybe it's just our linear "autistic" thinking, but it still doesn't explain to us why we need to waste $34 million on an East Van building to do what we've all been doing for free in our respective communities?? And if a key part of the PAFC concept is to take over and professionalize this parent support role, that's not a capital project, it's an ongoing program, so where is the ongoing operational program funding for that going to come from? And do the folks around the table realize that when you take over and professionalize our role, what you get is a social worker, and we already have those, funded by MCFD, in every community. So are you suggesting that PAFC needs to morph into a social worker training program or a program to replace the MCFD staff already in place?

5) Governance: The meeting also raised this touchy issue, and participants did raise some of the concerns around this, although there are no answers yet. When PAFC takes over all these important roles, whoever is in charge of the provincial organization in East Van will be calling the shots and spelling out what services are delivered (or not) and how, whether you're accessing them in East Van or Terrace. Is that what communities really want? Another Vancouver-based monolith like CLBC where high-priced execs tell them how to run their lives or what they can and cannot get??

If PAFC's steering/advisory groups wish to listen and speak on behalf of families, they will hopefully demonstrate more interest in steering this project around 180 degrees, turning it into another decentralized, virtual program like POPARD or BCAAN that simply directs funds and resources to outlying communities to help them address their own needs, instead of a centralized organization with an exorbitantly expensive Vancouver office.

The key to that is to persuade Premier Christy Clark that if she wants to invest $20 million of our tax dollars in improving the lives of families living with autism, spend it on boosting access to and quality of services, not on a ridiculously expensive building that most families will never see! Unfortunately that doesn't provide a nice ribbon-cutting Photo Op to stroke the vanity of politicians or to reward those who fund their political campaigns -- but this is supposed to be about kids with autism, not about the politicians, right? There's no harm in putting that on the record at your next meeting!

UPDATE: To add some further perspective, we want to share these comments from the parent of a child who has Down Syndrome, not autism, and thus is arbitrarily excluded from accessing the BC government's funding for early intervention therapy.

"I know this is supposed to be a communication forum for all of us and I know most of the parents involved with MOMS have children (or supported adults) on the Autism Spectrum. I am glad that you have funds to be able to access at least some of the supports you need, be they books, memberships or materials for your child/adult.

"I still find myself with the occasional pangs of grief and resentment, knowing that my daughter (and our family) can't get the same level of support because her disability isn't considered important enough by this government. It's a waste of time to feel jealous, I know. It fuels my fire to keep working on behalf of those who don't have Autism, but still struggle with similar disabilities. I'll dry my eyes and bring myself out of my pity party, now.

Keep up the good work, folks! Your battles are important. Please just every now and then, remember those of us outside the Autism spectrum community."

- From a parent in the MOMS network

MOMS, along with other groups, and the BC Representative for Children and Youth , have all stressed the need to address this inequity as a top priority, and to provide the necessary funding to do so in a way that does not rob Peter to pay Paul:
Dawn & Cyndi, MOMS