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.
Here is some good news for a change - but will BC's government listen?
Poll shows support for increasing early childhood spending
April 28, 2010
More than 70 per cent of B.C. residents underestimate how many of the province's children enter school developmentally vulnerable, an Angus Reid poll released today shows.
And most of those polled expressed strong support for increased public spending once they learned how many B.C. children are at risk and how low Canadian investment in early childhood education and daycare is in contrast to other wealthy countries. Read more
As Victoria parents prepared for a candlelight vigil at the Legislature Monday Feb 1 to mourn the Province's closure of critical autism early intervention programs, the BC Association for Behaviour Analysis -- the equivalent of the BC Medical Association -- issued a lengthy position statement criticizing these and other recent autism policy changes.
The Association calls for significant increases to the current autism funding levels for preschoolers, for funding to be tied to individual need, and for restoration of the direct funding option for families. It also strongly condemned the lack of consultation over the controversial changes announced by Children's Minister Mary Polak last fall.
"Many people in the Autism community were shocked and disturbed by the closure of all of the EIBI programs and the funding structure changes," the BC ABA statement reads. "...Furthermore, discussions with stakeholders might have resulted in a more sound decision on how to achieve province-wide, equitable access to services for individuals with ASD."
The BC ABA joins parents, advocacy groups and other professionals who have universally panned the province's abrupt autism policy changes, stating that the new provincial funding formula for preschoolers with autism "is not sufficient to purchase intensive behavioural therapy at the level (25-40 hours per week) which research has shown to be effective." The Association cites the example of other Canadian provinces that fully fund the costs of early intervention, noting that "given the discrepancy between provincial funding and the actual costs of implementing an intensive ABA program, few children in British Columbia will likely receive the intensity of treatment that has been empirically shown to improve the core characteristics of Autism." (Emphasis added)
Next Monday Victoria families will hold a candlelight vigil at the Legislature to protest the closure of the province's critical early intervention programs for autism (see notice below).
Children's Minister Mary Polak stopped funding the province's EIBI programs last fall to save $1.5 million annually, despite the desperate pleas of families and many studies confirming that these programs are hugely effective, saving on average $3 - 5 million PER CHILD in net lifetime costs to society (for more details and sources, see our EIBI Facts).
As a result, at least 70 BC children per year will be denied the intensive early behaviour intervention that provided the only hope for these children and their families of a near-normal life, unless they can afford to privately pay tens of thousands annually to top up inadequate subsidies and susbstitute programs to replicate the benefits that only a full EIBI program can offer.
These children join thousands more in BC who are already being denied access to the early intervention supports and programs that they need, due to foolish and short-sighted policies that place enormous and unnecessary strains on other provincial services, such as education, health care, welfare, community living, social housing, justice, etc etc....
Minister Polak and her colleagues also ordered the closure of a series of other cirtical children's programs (which collectively don't put the tiniest dent in the current provincial deficit). These include the provincial Infant Development, Supported Child Care and Aboriginal Supported Child Care program, the Roots of Empathy program, FASD prevention, child and youth mental health and more - all of which will directly impact children and create significantly higher long-term costs than the meagre short-term budgetary savings.
These actions cruelly target the province's most vulnerable children and directly violate Premier Campbell's 2005 promise to build "the best system of supports in Canada for children with special needs."
We invite families outside of Victoria who can't make it to the vigil to show their support by signing and circulating our petition calling on Premier Campbell to honour his promises to BC's children with special needs and/or by writing their MLAs to remind them that BC families will not rest until these and other programs are restored, and that all children with special needs are able to get the basic help and support they need - in a timely manner and in a form that respects their individual needs and those of their families.
The petition can be accessed online here.
Find out more and support the ongoing FAIR campaign to restore EIBI programs on Facebook
As autism early intervention programs in BC prepare to close their doors or significantly scale back services in coming weeks due to provincial funding cuts, leaving many desperate BC families in the lurch, the US media are all abuzz over a major new study published today in the journal Pediatrics. That study documented significant gains in toddlers with Autism Spectrum Disorder in the Seattle area who were diagnosed and given intensive early behavioural intervention under a program known as the Early Start Denver Model (ESDM) starting at a very early age.
Below are two of the news reports (Note: some, such as the CNN report, had major errors!):
- Time Magazine: New evidence that early therapy helps autistic kids
- CBC: Early intervention helps autistic toddlers
Some key points:
- Participants: The study focussed on toddlers - all children started treatment before they were 2.5 years old, some as young as 18 months old. (With recommendations to screen for autism at 18 months now, the authors wanted to demonstrate the efficacy of starting intensive intervention immediately upon diagnosis.)
- Randomized, controlled study: 48 children were randomly assigned to either the Early Start Denver Model or to regular services available in the community, such as preschools, private ABA providers, infant & child development programs ,etc.
- Study period: Gains for both groups were compared after 2 years of intervention.
- Results: After 2 years, the ESDM group had significant improvements in IQ, adaptive behaviour, and autism diagnosis, compared to the other group. The ESDM group developed at the same rate as typical children during the two years, while the control group fell further behind.
- 7 children in the ESDM group (30%) had their diagnosis downgraded from Autism to PDD-NOS after the 2 years, compared to one child in the control group.
Conclusion: The study results "compare favourably" with other controlled studies of intensive early intervention approaches. The gains seen were also larger than those seen in studies that used developmental behavioural approaches over shorter periods or with fewer hours of therapy delivered per week.
Early Start Denver Model
ESDM is a comprehensive early behavioural intervention for infants to preschool-aged children with ASD that integrates ABA with developmental and relationship-based approaches. Intervention is provided in the home by trained therapists and parents, and embedded in fun, interactive play activities.
For the study, ESDM children were provided 2-hour sessions, twice per day, 5 days/week by trained therapists. There was a detailed manual and curriculum, extensive parent training, ongoing supervision and consultation from a full multi-disciplinary team. Due to illness, vacations etc, the ESDM children ended up actually receiving an average of 15 hours/week from trained therapists and 16 hrs/week from parents during the 2 years.
Families in the control group received comprehensive advice on intervention, including resource manuals and reading materials. This group reported receiving an average of 9 hours of individual therapy and 9.3 hours/week of group therapy from regular community resources in the greater Seattle area, such as developmental preschools, local infant and child development programs and/or private ABA providers).
Intensive early intervention programs for autism cost ~ $50 - 70,000 per year but a major recent US study found that effective intervention can reduce the estimated lifetime costs of $3.2 million per child with autism by 65% on average. Source: US National Standards Report, 2009
BC Children's Minister Mary Polak has defended her decision to cut BC's early intervention programs and instead give families $6,000 - $22,000 each to spend on family-directed programs and community services, a move that will produce direct savings of $1.5 million per year, but which is expected to cost far more in the long run. After being forced to retract the rationale that BC's autism early intervention programs are not effective, Polak argued that the move is necessary to ensure the long-term sustainability of BC's autism program.
Here is the link to the only Canadian study that I've been able to find on cost benefits of autism early intervention. It found that expanding intensive early intervention to all children with autism in Ontario would save government an estimated $45 million annually in 2003 dollars, while providing improved quality of life for individuals with autism and their families. Those savings disappeared if intervention programs were less effective than assumed under best practice models.
MOMs marks Children’s Day, 20th year of UN Convention, with petition urging BC Premier to honour promises to kids
NOV. 19, 2009:—This Friday, Nov. 20 marks the 20th anniversary of the UN Convention of the Rights of the Child – a date that is also celebrated annually in Canada and elsewhere as universal Children’s Day.
The MOMs provincial family support network, which has staged a series of actions in recent weeks to draw attention to BC families’ concerns about new cuts and ongoing gaps in critical services for children at risk, is marking the occasion by officially launching an online petition urging BC’s Premier to start living up to commitments made to BC’s vulnerable children.
Leaked MCFD documents obtained today by MOMS describe a process that has been underway since August 2009 to achieve "baseline funding reductions" for contracted agencies that deliver most of the Ministry's front-line services and supports - with a focus on cuts to community-based intervention and early intervention.
The "North Region STOB 80 Reduction Planning Process and Principals" (sic) document refers to a process for "cost recovery" for the current year and outlines planning, roles, principles and provincial direction guiding a second process that is also now underway to determine further reductions for 2010-11 in order to meet Ministry budget targets.
Families were out in the streets protesting against provincial autism policies again last week, this time in front of Premier Campbell's Point Grey constituency office in Vancouver. The rally was organized by FEAT BC (Families for Early Autism Treatment) along with the group Medicare for Autism and the ABA Support Network.
The BC Legislature debated the Ministry for Children & Family Development's revised 2009-10 budget on Nov 4-5. Below, an extract of Opposition Critic Maurine Karagianis questioning Minister Mary Polak about autism cuts:
"M. Karagianis: When we look at things like the EIBI program…. Let's talk about that very specifically — the financial implications, which the minister has said is really the sole issue here around why this program was cut. Why did the government not make an attempt to sit down with program providers and families and try and find a way to provide what is very admittedly an exceptional program with exceptional outcomes to more families, rather than saying, "Because we can only reach 70 families at a time, we're cutting the whole program," and rather than actually finding a way to make that very effective program available to, perhaps, more people?
1. Families gather in Langley to protest Autism cuts
Thanks to all the families who came out to Langley Friday for the rally co-hosted Friday by MOMS and FAIR (Families Fighting Against Autism Intervention Reductions) to highlight autism cuts. (Especially the heroic Victoria folks who got up at 5 am to pack up kids & minivans to make it!!).
A great family turn-out, strong local media interest & fantastic public support more than made up for the horrible weather. Mary Polak decided to close her office for the day, but no one seemed too offended. later, parents distributed hundreds of flyers (attached) explaining the impact of cuts & why they are so foolish, inhumane and short-sighted.
- Friday, November 13 at 12 noon
- Premier Gordon Campbell's MLA office, 3615 West 4th Ave in Point Grey, Vancouver.
This rally is organized by FEAT BC (Families for Early Autism Treatment) to highlight concerns over Minister Polak's cancellation of the direct funding option in the autism program. FEAT families supported the EIBI rally in Langley and we encourage other families to show support for their concerns. We're all in this together! ...and hopefully the BC government will start to see that we're not going away and we're not shutting up!
2. Next Steps: Broader MOMs campaign
Despite rallies, meeting, letters, calls & emails, government is still not listening. In addition to recent cuts to vital children's services (e.g. IDP, SCD and EIBI), Premier Campbell has failed to honour his promise to children with special needs and children at risk by fixing existing problems: waitlists, underfunding of Special Education, denial of early intervention services to many children, repeal of the IQ 70 limits to access services.
So MOMS is planning an extended next phase of action that takes our message directly to British Columbians, who have demonstrated strong support wherever we've created awareness of these concerns.
HOW YOU CAN HELP:
We need financial support for this next phase to develop and run targeted ads and public service announcements in local community media, explaining why the cuts and the failure to fix other gaps for special needs and kids at risk is foolish, short-sighted and inhumane. We'll be urging British Columbians to take a simple step to indicate their support & join us in telling their MLAs, Premier Campbell and Minister Polak that BC's vulnerable kids deserve better and that cutting now means paying more later.
Please contact us if you can provide financial support or if you have potential leads or connections to other organizations in your community who can support this campaign. MOMs has already received our first grant (a big thank you to BC FamilyNet Society for helping to cover recent rally costs!!). Since having $$ is a first for MOMS, we are making arrangements with a "blue chip" registered organization to receive and manage further donations on our behalf.
Thanks for all those supporting us by participating or behind the scenes! With your support, we can do it! And when we actually get out and hear the fantastic public support out there, it makes all the effort worthwhile!!