ACT News and Resources

Analysis identifies serious flaws in MCFD’s proposed tools for determining how children with disabilities qualify for support

In late 2021, BC’s Ministry of Children and Family Development (MCFD) announced sweeping changes to how it intends to provide funding and services to children and youth with disabilities. Since that time, parents, advocates, and service providers have raised questions and concerns about various elements of the proposed new system. This includes the needs-assessment tools the new system will rely on to decide which children with disabilities should receive support. Caregivers are expected to fill these in online.

An analysis by Dr. Pat Mirenda, Professor Emerita, University of British Columbia, supports concerns that these proposed tools have not been properly assessed by MCFD, in terms of their fit for ensuring that children have access to services. 

To date, MCFD has not provided details of how it intends to use these pediatric evaluation tools, known as PEDI-CAT and Vineland-3. The only jurisdiction where this combination has been used internationally is Australia, where a study revealed that the PEDI-CAT tool disqualified 25% of children whose parents were concerned and whose pediatricians referred them for assessment. The Vineland-3 tool disqualified 4% of children.

In a recent letter to MCFD, a collective of organizations who work with and support families of children with disabilities, including ACT, noted that more consultation is needed to ensure that over reliance on these assessment tools will not cause harm or exclude children and families from the supports and services they need.

The British Columbia Disability Collective is a group of 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. They thank Dr. Mirenda for her analysis of a complex issue.

Read the full analysis  


Inclusive Rally in Victoria

Wed, February 9, 2022

11:30AM- 1:30 PM PST
BC Legislative Building, Victoria

Join parents, advocates, caregivers and service providers of the most vulnerable children in BC on February 9th in person on the lawn of the BC Legislature in Victoria, as well as virtually for those that cannot attend in person. This is an Inclusive Rally to keep the pressure on the BC NDP and the Minister of Children and Family Development to Stop, Consult and Listen to all concerns with regards to the elimination of individual autism funding, the At Home Program and moving to a hub/centre-based system. There has been extensive criticism of the new framework by families, Indigenous leaders, opposition parties, disability groups and the media.

It is the position of the rally organizers that if MCFD really wants to help children with FASD, Down syndrome, ADHD and other disabilities, then the Minister should engage in meaningful consultation and give the choice of individual funding. 

Details & RSVP Here  


MCFD Announces CYSN Family Connection Centre Sessions


Please join the Ministry of Children and Family Development for small group sessions to discuss and explore the journey of children and youth with support needs and their families in the family connections centres. To maximize time for discussion and answer as many questions as they can, they will email you some pre-recorded materials to watch in advance.

LIMITED SPACES ARE AVAILABLE. REGISTER TO SECURE YOUR SEAT.
 

How to Register:
Families can register here
Service Providers and Sector Partners register here

Remembering Dr. Karen Raye Kester

ACT has sad news to share with the autism community. Dr. Karen Kester, who volunteered at many of ACT’s events, died late in 2021. Karen was a highly respected behavior analyst who supported many children and their families over the years and whose kindness in working with vulnerable families was particularly appreciated. She recently finished her doctorate at UBC, specializing in helping children with anxiety.

This is a great loss for her friends and family, and for those families who have relied on her. Visit her obituary page here

ACT thanks everyone who has donated in her memory.

 
 
 

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 Health1-855-412-2121
(8:30am – 9pm, 7 days a week)
Interior Health1-833-469-9806
(Voicemail only and call back)
Northern Health1-844-645-7811
(10am – 10pm, 7 days a week )
Vancouver Coastal Health1-604-263-7377
(8:30am – 4:30pm, Mon-Fri)
Vancouver Island Health1-888-533 -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.

Best regards,

Penny Ballem MD FRCP FCAHS
Senior Executive Lead
Immunize BC

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:

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.

Sincerely,

Heather Harrison

CC:

Ms. Kasari Govender, Human Rights Commissioner of BC – commissioner@bchumanrights.ca

Mr. Jay Chalke, BC Ombudsperson –  Jay.Chalke@gov.bc.ca; info@bcombudsperson.ca

Prime Minister Justin Trudeau – pm@pm.gc.ca

Frank Caputo, MP, Kamloops-Thompson-Cariboo – frank.caputo@parl.gc.ca

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 – mcf.deputyminister@gov.bc.ca

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 – karin.kirkpatrick.mla@leg.bc.ca

AutismBC – advocacy@autismbc.ca

Autism Community Training (ACT) – info@actcommunity.ca

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