Immunize BC Letter: Vaccine Support for Children with Neurodivergence Disorders
A number of parents are reporting difficulties in finding the right resources to have their complex children vaccinated. ImmunizeBC has set up a system to support families getting the information they need to access vaccinations against COVID-19. Please see the below for contact information in each region.
December 22, 2021
To: Families, Caregivers and Service Providers for Children with Neurodivergence Disorders
Re: COVlD-19 Vaccination
Dear Family Members, Caregivers and Service Providers,
As the lead of lmmunize BC, I am anxious to ensure children with neurodivergence disorders are able to access appropriate settings and environments for their vaccination. Based on the direction of the Provincial Health Office, we are strongly encouraging all children who are eligible (those 5-11 years of age) to be vaccinated.
Our program and the Health Authorities across the province are aware of the need for more support to this group of children and their families and caregivers. We have discussed this at our Leadership committee and provisions are being made, if needed by a family or caregiver, to access special supports for the vaccination process. Below is a table which provides contact numbers for each Health Authority that can be used by parents, other caregivers or service providers where special clinic arrangements or support may be required. It may well not be necessary for all children and we have already successfully vaccinated a number of children in this group. However, please make use of this if you feel it would help make the experience more positive for your child.
|Health Authority:||Phone Number & Operating Hours:|
|Fraser Health||1-855-412-2121 |
(8:30am – 9pm, 7 days a week)
|Interior Health||1-833-469-9806 |
(Voicemail only and call back)
|Northern Health||1-844-645-7811 |
(10am – 10pm, 7 days a week )
|Vancouver Coastal Health||1-604-263-7377 |
(8:30am – 4:30pm, Mon-Fri)
|Vancouver Island Health||1-888-533 -2273 – Option 1, Community Health Services |
(8:30am – 4:30pm, 7 days a week)
Please contact the Health Authority with any questions and feel free to access the government website which has extensive information about COVID-19 immunizations (gov.bc.ca/getvaccinated). Thank you so much for your support of the Immunize BC Program.
Penny Ballem MD FRCP FCAHS
Senior Executive Lead
2021 in review – Donate to support ACT’s work in 2022
Thank you to our Presenters, Donors, Members and Sponsors
ACT has served more people in 2021 then ever before – responding to the acute need during the pandemic for online resources and training to support those with autism and other neurodiverse conditions. In 2022, with your support, ACT will continue with our information and training work. As the provincial government continues to ignore the concerns of families, researchers and clinicians, ACT will step up our work with other disability organizations to raise public awareness of the risks to vulnerable children from MCFD’s new framework.
ACT’s accomplishments are the result of extensive collaboration. A very big thank you to all those who volunteer their time and expertise. Together, our members, donors, presenters and sponsors enable ACT to provide a wealth of free information and training resources for those with autism and other neurodiverse conditions.
See ACT’s Accomplishments in 2021 including a video timeline showcasing our work over the past two years.
In 2021, ACT stepped up global advocacy efforts:
- Launched MCFD Framework for Children with Support Needs to bring together information on the campaign to have MCFD reconsider the framework.
- Partnered with supporters to translate our advocacy tips into Chinese, Korean, Punjabi, Farsi, Hindi, French, Spanish and Portuguese.
In 2021, ACT provided:
- 53,000 hours of training to 6,000 registrants – a 194% increase in hours of training over 2020.
- 12 evidence-based training opportunities.
- Training to audiences in 131 BC towns and cities; 10 provinces and 21 countries.
- $35,000 in bursaries for low-income registrants and for our capacity-building program for Indigenous communities.
- A highly active Facebook page with over 9,000 followers. Follow ACT on Facebook.
In 2021, Autism Videos @ ACT (AVA):
- Added 12 new videos on a range of practical topics: toilet training; parent coaching; community recreation, sexuality and mindfulness.
- AVA now has 77 free online videos, edited versions of our live events, at www.actcommunity.ca/videos.
Donations to support the expansion of our work in 2022 are very welcome.
As a federally registered charity, ACT provides tax receipts.
On International Human Rights Day: A Letter from a Parent to Premier Horgan
ACT continues to be copied on letters from parents protesting the Ministry of Children and Family Development’s announcement that individualized funding will end in 2025. The letter that follows was sent to Premier John Horgan by Heather Harrison on December 10th, in honour of International Human Rights Day, and sums up the protests from families from across BC. ACT is sharing the letter with her permission.
December 10, 2021
Premier John Horgan
PO Box 9041 Stn Prov. Govt.
Victoria, BC V8W 9E1
Dear Honorable Premier Horgan,
Today, Friday, December 10th, is Human Rights Day. The BC Office of the Human Rights Commissioner and the United Nations share a similar goal: to address the root causes of inequality, discrimination, and injustice that affect the most vulnerable people in society, including people with disabilities
As you know, recently, Ms. Mitzi Dean, Minster of Children and Family Development, has decided to claw back individualized autism funding, which is currently guaranteed and earmarked for therapeutic use with each autistic child in BC. Her plan is to remove these funds from families and “pool” them into a generalized, centralized, special needs “hub”, which will not guarantee services to any child, regardless of diagnosis. The only thing this plan guarantees, is a complete lack of accountability to parents of children with special needs and taxpayers.
Ms. Dean has repeatedly stated that all children will receive the supports they need under her new model, however, this statement is misleading. She intends to have the hubs decide on what each child’s “needs” are, rather than families who know the child best, or the highly qualified clinicians, who are responsible for the child’s diagnosis. Despite rating criteria, this will be an extremely subjective decision on the part of each hub, and one that will inevitably err on the side of conserving the budget; not providing quality service to disabled children. Even if a child is fortunate enough to make it past the gatekeepers and into individual service reception, the quality of service (since there will not be a choice in provider), as well as recourse for families who are not happy with service (or lack thereof), are systemic problems with this proposed model that stand in the way of disabled children having their true needs sufficiently met. Children and families with complex, unique, and diverse needs, require flexible solutions – not a one-size fits all approach that is ineffective and often traumatizing.
Too many families are already experiencing vast injustices and exhausting advocacy battles in other needs-based hub models, such as the public school system, where, even with significant advocacy, children are not being supported adequately. MCFD simply cannot serve all children with support needs in BC, to an appropriate minimum standard with this proposed model, unless Ms. Dean plans to either offer an unlimited budget or instruct the hubs to utilize gatekeeping procedures which prevent children from receiving the personalized help they need.
Her decision also jeopardizes the chances that services will even exist for most children once the hub system has completed its rollout. There is compelling evidence that the act of carrying out Ms. Dean’s plan, will destroy the infrastructure that currently successfully supports thousands of children in this province and has taken over 20 years to build. Given the massive scale in which she plans to launch this program, it will rely heavily on the compliance of current service providers to accept regular employment contracts with hubs. Unfortunately, service providers across the province are stating that they have no interest in giving up their businesses to do this. In fact, some have even expressed that they would rather work in fast food service, than work under this new model. Therefore, there will be even fewer service providers available than there are now because they will simply refuse to apply for employment within hubs. Children will suffer as a result.
Whether or not current service providers will commit to supporting children, despite the way in which they are being forced to do it, is a huge concern. It is not, however, as concerning as the government believing that it is okay to implement a system which strips individuals of their right to make autonomous decisions regarding their own needs, and replaces it with a government entity poised to dictate to them what their needs are. Parents, caregivers, and service providers opine, almost unanimously, that implementation of the hub model will result in inferior services for children, and we find it hard to believe that Ms. Dean truly thinks this hub model is a better system than putting funds directly in the hands of the individuals and families who need them. The needs of children will never come first in the cost-saving model Ms. Dean plans to implement, and parents ubiquitously resent her telling us they will. We have experienced models just like hers before and they simply are not in the best interest of children.
Ms. Dean’s proposed model (if she is permitted to implement it), will create a systemic root cause of inequality, discrimination, and injustice. Her plan fosters an ableist and prejudiced approach, likely to only serve children who are most visibly disabled, and offer nothing to those with less visible disabilities. This will require parents to take on endless hours of tireless advocacy if they wish to receive the bare minimum of support for their child (which is how the school system currently functions). If this flawed system is implemented, the human rights of thousands of children will be jeopardized.
I am requesting again that you overturn Ms. Dean’s decision to claw back individualized autism funding and rectify the damage she has done. Parents and service providers across this province are anxiously awaiting our meaningful consultation in establishing a way to provide individualized funding to all children with special needs in BC.
Ms. Kasari Govender, Human Rights Commissioner of BC – email@example.com
Mr. Jay Chalke, BC Ombudsperson – Jay.Chalke@gov.bc.ca; firstname.lastname@example.org
Prime Minister Justin Trudeau – email@example.com
Frank Caputo, MP, Kamloops-Thompson-Cariboo – firstname.lastname@example.org
Jagmeet Singh, Leader of the New Democrat Party – Jagmeet.Singh@parl.gc.ca
Mike Farnworth, Deputy Premier and Minister of Public Safety and Solicitor General – PSSG.Minister@gov.bc.ca
Mitzi Dean, Minister of Children and Family Development – MCF.Minister@gov.bc.ca
Peter Milobar, MLA Kamloops-North Thompson – peter.milobar.MLA@leg.bc.ca
Todd Stone, MLA Kamloops-South Thompson – todd.stone.MLA@leg.bc.ca
Alison Bond, Deputy Minister of Children and Families – email@example.com
Adrian Dix, Minister of Health – adrian.dix.MLA@leg.bc.ca
Shirley Bond, MLA Prince George-Valemount/Opposition MoH – shirley.bond.MLA@leg.bc.ca
Karin Kirkpatrick, MLA West Vancouver-Capilano/Opposition MCFD – firstname.lastname@example.org
AutismBC – email@example.com
Autism Community Training (ACT) – firstname.lastname@example.org
34 Disability Organizations Unite for Letter to Minister Dean Regarding CYSN Framework
“Though we represent different disabilities and diverse approaches to
supporting children, youth, and families, we are in broad agreement on
what we believe are shortcomings in MCFD’s process and proposed plan
for Family Connection Hubs.”
Thirty-four organizations supporting families across disabilities from around the province have united for a letter to MCFD Minister Mitzi Dean. The letter expresses shared concerns about the proposed framework for Children and Youth with Support Needs (CYSN) services, including the lack community consultation and transparency, issues with needs-assessment tools, insufficient levels of qualified service providers, and the loss of family autonomy to choose the services their children receive.
December 3, 2021
Honourable Mitzi Dean
Ministry of Children & Family Development
PO Box 9724 Stn. Prov Govt
Victoria, BC V8W 9S2
RE: MCFD System Changes for Children and Youth with Disabilities
Dear Minister Dean,
We (the undersigned) cumulatively represent 34 BC-based organizations, as well as clinicians, researchers, and businesses with hundreds of years of combined experience supporting tens of thousands of children and youth with disabilities and complex needs. We are jointly writing this letter to express our concerns with the Ministry of Children and Family Development’s (MCFD) sudden decision to transform the existing support network for children and youth with disabilities to a system of generalist hubs while simultaneously eliminating individualized funding.
As a group, we are certainly pleased to hear that MCFD is committed to ensuring all children will finally have equitable access to disability supports and services—including those who live outside major population centres—and that this support will be available with or without a diagnosis. Collectively, we agree that the current system is in dire need of change, particularly when it comes to ensuring equitable and adequate funding for all neurodivergent and disabled children. There are currently far too many underserved individuals, families, and communities throughout BC. We share MCFD’s ambition to reach these populations with essential services that are necessary for all children, youth, and families in this province to thrive.
Though we represent different disabilities and diverse approaches to supporting children, youth, and families, we are in broad agreement on what we believe are shortcomings in MCFD’s process and proposed plan for Family Connection Hubs.
There has been an acute lack of meaningful engagement and collaboration with our community regarding changes to the Children and Youth with Support Needs (CYSN) Framework. Although MCFD claims to have conducted consultations prior to announcing the new system, none of our organizations were invited to or included in these discussions in any meaningful way, if at all. The announcement of these major funding changes has caught the majority of BC’s disability community by surprise, as the recent statement from the Representative for Children and Youth also describes. As you know, the First Nations Leadership Council does not support the changes you have announced, nor the process you have undertaken. Consultation with Indigenous leaders and communities is necessary to reconciliation given the disproportionately high rates of Indigenous children and teens in MCFD’s foster care system.
There continues to be a lack of transparency about the changes to the CYSN Framework. The initial announcement included big promises but few details. Subsequent information releases have failed to reveal further insight into how the hubs will provide more support compared to the current system. Like Dr. Jennifer Charlesworth, we are especially concerned with the lack of clear plans to significantly increase funding or increase the number of service providers within the proposed hub model. Since the funding change announcement, all of our organizations have been inundated with questions from concerned parents and community members–questions that we can’t answer due to the scarcity of information from MCFD. Unfortunately, this lack of transparency and clarity continues even after information sessions were held this week for families, service providers, and sector partners.
Changes to the CYSN Framework should be guided by principles such as flexibility, choice, equity, access, cultural safety, trauma-informed practices, empowerment, and dignity. As disability organizations, we know from experience how vital it is for families to have agency and autonomy over the services their children receive and the supports they need. These benefits are a critical element that is missing from the proposed plan. For this reason, a hybrid model would better meet families’ diverse circumstances by allowing a variety of ways to access services, funding, and support, avoid disruption of already established supports and minimize the need to jump through unnecessary hoops or seek additional diagnoses. Rather than minimizing the role of diagnosis, waitlists for diagnostic assessment must be shortened to a maximum of three months and efficiencies in the public assessment system must be created. Additionally, eligibility must be streamlined for all disabilities, ensuring all children receive time-sensitive early intervention supports during their most critical years of development, even while waiting for a diagnosis. Families shouldn’t have to prove that they deserve financial, social, and political support for their disability-related needs, nor should they have to continuously prove need or eligibility when their disability is genetic or lifelong.
There is also much concern about the proposed needs-assessment tools. More robust consultation needs to be done to ensure that the tools being used to assess needs will not cause harm or exclude children and families from supports and services they need. We feel that assessors should not serve as gatekeepers but instead open the door to exceptional support for all children and youth who need it. We are concerned the hubs will not accomplish the latter.
Supporting all children will require accurate data on the number of children and youth that require supports. The province has not shared a true reflection of the population that will be served. While the government speaks of serving an additional 8,300 children, we know that is not an accurate number representing the need. Thus, service providers and modelling are needed to understand the full extent of this gap today and in the future.
Currently, there are not even enough service providers to meet the needs of all children and youth currently accessing CYSN services. We need more pediatricians, speech-language pathologists, occupational therapists, physical therapists, psychologists, behaviour analysts, and other support professionals who work directly with children with disabilities throughout the province. Without more of these essential professionals and access to services, especially in rural communities, supports will remain constrained with or without a hub system. Service providers with unique expertise in a specific disability or support need represent one of the province’s most valuable assets. These specialists have the knowledge and experience to offer targeted, individualized support that cannot be matched by a hub that caters to all disabilities. Families are deeply concerned that they will receive generic services at a hub that lack this depth of knowledge about their child’s specific disability. We also can’t assume that all service providers will be culturally safe for all children, youth, and families. Families must have the option to choose service providers to build on strengths and prevent harm and trauma. This may require them to be at arms-length from MCFD.
As concerned stakeholders, we share the objectives that the proposed MCFD plan intends to achieve, especially in terms of supporting families that are underfunded or completely without government funding. We particularly welcome the objective of guaranteeing support for those without a diagnosis. Therefore, a hub system may be an appropriate complement in creating a hybrid system that maintains individualized funding for the families for whom it’s already working and expands this option to include all families as a choice. To this end, MCFD must invest substantially more funding into the CYSN Framework to meet the needs of all children and youth with support needs and to avoid reproducing the pitfalls of the Ontario model, in which 50,000 children await access to promised needs-based supports.
We call on MCFD to immediately extend more funding to all children with disabilities, with or without a diagnosis. A failure to do so will continue to push unfunded families beyond their breaking points.
We also call on MCFD to immediately engage and collaborate with the undersigned in the restructuring and decision-making process of the proposed service system.
Cc: Hon. John Horgan, Premier and President of the Executive Council, and MLA for Juan de Fuca: email@example.com & firstname.lastname@example.org
Ms. Allison Bond, Deputy Minister, MCFD: Allison.email@example.com
Ms. Shirley Bond, MLA for Prince George-Valemount, BC Liberal Party Interim Leader and Official Opposition critic for Seniors Services and Long-Term Care, and Health: shirley.bond.MLA@leg.bc.ca
Ms. Karin Kirkpatrick, MLA for West Vancouver-Capilano and Official Opposition critic for Children, Family Development, and Childcare: karin.kirkpatrick.MLA@leg.bc.ca
Mr. Trevor Halford, MLA for Surrey-White Rock and Official Opposition critic for Mental Health and Additions: trevor.halford.MLA@leg.bc.ca
Ms. Sonia Furstenau, MLA for Cowichan Valley, Leader of the BC Green Party and House Leader: sonia.furstenau.MLA@leg.bc.ca
Ms. Stephanie Cadieux, MLA for Surrey South and Official Opposition critic for Gender, Equity, Accessibility, and Inclusion: stephanie.cadieux.MLA@leg.bc.ca
Ms. Jackie Tegart, MLA Fraser-Nicola Opposition critic for Education: jackie.tegart.MLA@leg.bc.ca
Mr. Dan Davies, MLA Peace River North, and critic for Social Development & Poverty Reduction: dan.davies.MLA@leg.bc.ca
Ms. Teresa Wat, MLA for Richmond Centre and a former member of the Select Standing Committee on Children and Youth: teresa.wat.MLA@leg.bc.ca
Ms. Melanie Mark, MLA for Mount Pleasant and Minister of Tourism, Arts, Culture and Sport: melanie.mark.MLA@leg.bc.ca
Ms. Brenda Bailey, MLA for Vancouver-False Creek and Parliamentary Secretary for Technology and Innovation: brenda.bailey.MLA@leg.bc.ca
Mr. David Eby, MLA for Vancouver-Point Grey, Minister Responsible for Housing, and Attorney General: firstname.lastname@example.org
Mr. Ravi Kahlon, MLA for Delta North and Minister of Jobs, Economic Recovery, and Innovation: email@example.com
Ms. Selina Robinson, MLA for Coquitlam-Maillardville and Minister of Finance: firstname.lastname@example.org
Mr. Nicholas Simons, MLA for Powell River-Sunshine Coast and Minister of Social Development and Poverty Reduction: email@example.com
Ms. Anne Kang, MLA for Burnaby-Deer Lake and Minister of Advanced Education and Skills Training: firstname.lastname@example.org
Mr. Mike Farnworth, MLA for Port Coquitlam, Minister of Public Safety, Solicitor General, and Deputy Premier: email@example.com
Murray Rankin, MLA Oak Bay-Gordon Head and Minister of Indigenous Relations and Reconciliation: firstname.lastname@example.org
MCFD’s Consultation Process – Light on transparency, heavy on control
A Statement from Deborah Pugh, ACT’s Executive Director
I have been asked a number of times just what happened at the Minister’s Advisory Council on Children and Youth with Support Needs set up in the Spring of 2021 by MCFD Minister Mitzi Dean. Having signed a non-disclosure agreement, I am not free to provide details. However, I can share my critique of the process which led me to resign in July 2021. [Read my resignation letter]
My expectations of the Council were never high, shaped by 25 years of participating in MCFD’s community consultations in my capacity as a parent, as ACT’s Executive Director and now as the grandmother of a child with a genetic condition. However, I am observing a new low, in terms of MCFD’s willingness to listen to families. The previous Liberal government virtually ignored the needs of children with disabilities and their families, haphazardly and stealthily cutting funding and programs to meet their budgetary goals. In contrast, the NDP government appears determined to dictate to families a whole new system based on “Family Hubs”. Their process negates the diversity of family and child needs and the complexity of system change. This process is being promoted as “‘consultation” but MCFD’s tight control of meetings using Zoom technology, yet another consequence of the pandemic, smacks of a rubber stamp.
In the MCFD session held on November 29th, for example, parents were not permitted to see each other or share comments via the chat in response to what was largely a lecture by MCFD representatives. One parent described the process to me as “putrid”. This degree of control appears to be key to MCFD’s effort to repair the damage done to the tattered reputation of the long promised ‘Framework for Children and Youth with Support Needs’. The rallies, avalanche of protest letters, and the 21,000 signatures now added to the petition presented to the legislature on November 24th, have clearly spooked the government which appears totally unprepared for the degree of outrage their “framework” has ignited.
As Rob Shaw explains in his brilliant analysis, Consultatio post facto, “The NDP has adopted a bad habit of going through the motions of consulting, only to plow ahead regardless of objection or concern.” Shaw points to the searing letter from the First Nation’s Leadership Council which echoes sentiments from across the BC disability community that “Inviting us to your town halls, after you have made your unilateral decision – a decision that is inconsistent with the UN Declaration and not based on any UN Declaration analysis – demonstrated how disastrously off-course your approach is”.
The current consultations can be seen as the third stage of MCFD’s deeply flawed process. The first was in 2019 when families explained in a series of meetings how their children were being denied therapy to address their disabilities and families were struggling without respite. Many expressed that the current system is not working. An overview of the concerns can be seen here. The assumption that all families want and need the same supports is reflected in the final statement: “Families regard a one-stop, hub infrastructure as ideal.” Given the current level of protest, that is clearly an inaccurate statement.
The second phase of MCFD efforts to create a community consultation ‘paper trail’ followed the first year of the pandemic in Spring 2021. Throughout the pandemic, MCFD’s senior staff and former Minister Katrine Conroy were harshly criticized for their failure to support families dependent on CYSN services, as revealed by researchers from Simon Fraser University. Following the re-election of the NDP government with a majority, Mitzi Dean was appointed as the new MCFD Minister. Ms. Dean, whose background includes being a child protection social worker, quickly moved to create the Minister’s Advisory Council on Children and Youth with Support Needs. The Council members were a group of committed not-for-profit leaders and parents of children with a range of disabilities who struggled to provide a reality check to government.
Beginning in May 2021, I was a member of the Minister’s Advisory Council. Minister Dean attended, backed by a large number of MCFD staffers – few of whom had clinical understanding of children who needed therapeutic/medical supports. MCFD representatives smiled a lot but none of the serious concerns raised penetrated the shell of their conviction that ‘Hubs’ would be the magic bullet for all families and children. It felt like we were listening to an exercise in magical thinking as opposed to a well developed plan of action. I remain frightened at the chaos that this plan, if implemented, will trigger.
In July, I resigned, after a number of sessions in which we received no information on budgets or staffing for these ‘hubs’, despite persistent questions. Cancelling the autism funding programs was never mentioned but as no new funding had been committed, it was obviously central to the plan. Ethically, I could not lend legitimacy to the process by remaining on the Council. I wrote a second letter to Minister Dean on August 9, 2021, again raising concerns and calling for “ethical equity, otherwise the push will be on to remove responsibility for providing therapy to children from MCFD.”
MCFD’s continuing unwillingness to heed warnings from ACT and from many others, demonstrates how resistant senior bureaucrats within MCFD are to the concerns of families struggling to protect their children with disabilities. This has been evident throughout the pandemic. This is a ministry, and a minister, which see families of children with disabilities through the lens of child protection. Even frontline CYSN social workers with expertise in the complexities of providing therapy and support to families of children with disabilities are ignored. Few are left in the higher echelons of the Ministry with this expertise. I don’t think MCFD expected this degree of opposition because they don’t understand the implications of what they are proposing.
Clearly senior bureaucrats, like Deputy Minister Allison Bond, believe they can force a new system on families of children with disabilities. It is ACT’s view that it is time to move families of children with disabilities out of the Ministry of Children and Family Development and to provide CYSN with an expanded stand-alone budget, that is fully funded with cross party support to guard against inflation. Our children deserve no less.