ACT News and Resources

Implementing the Family Connections Centres in British Columbia: Perspectives of Professionals on the Registry of Autism Service Providers

Therapy Centres without Therapists?  

Clinicians expected to staff the newly announced Family Connection Centres (FCCs) across the province are concerned about its effectiveness, a survey carried out by researchers at Simon Fraser University reports. 

Implementing the Family Connection Centres in British Columbia: Perspectives of Professionals on the Registry of Autism Service Providers’ (RASP), is based on a survey of 1,000 clinicians listed on the RASP. It received 485 responses – an unusually high response rate. The results are unambiguous:  

  • Only 9% of respondents “agreed/strongly agreed” that the new Family Connections model will be effective in addressing the needs of all children requiring support.
  • 37% of RASP professionals reported that they were unlikely/very unlikely to work for an FCC.
  • 42% responded that they did not have enough information to decide.  
  • 75% of respondents agreed/strongly agreed that quality of care will be compromised within the proposed FCC model.  
  • 82% agreed/strongly agreed that this new model will lead to cumbersome bureaucracy.  
  • Qualitative analysis of open-ended responses revealed major concerns (e.g., two-tiered system, poorer quality of services, long waitlists).  

In October 2021, the Ministry of Children and Family Development (MCFD) announced over 40 Family Connection Centres as a more equitable system for children with disabilities requiring therapeutic and support services. The FCCs were announced as a response to criticism of MCFD’s long standing policy of limiting support to services for children with disabilities unless they have a diagnosis of autism. 

The announcement has been met with intense criticism from diverse organizations, especially those representing children with autism, because it entails the ending of individualized funding and expands the number of children who will be served, by at least a third, without making a commitment of significant new funding. This has raised the fears that the centres will be beset with long waiting lists as they will not be able to serve the number of children who require services given the province-wide shortage of clinicians. 

Clinicians on the RASP include Behavior Analysts, Occupational Therapists, Speech-Language Pathologist and Physical Therapists who provide therapy to children with a wide-range of disabilities, in addition to autism. This makes the survey relevant to the issue of how these new centres will attract staff given wide-spread shortages of these professionals in both the private and public sectors and the higher wages in the private sector. 

Dr. Grace Iarocci, Professor of Psychology at SFU and Director of the Autism and Developmental Disabilities Lab who led the research explains:

“The current system does need extensive reform as all disabled children need skilled support but creating physical centres does not address the human resource shortage that has been created because of lack of public funding to train and pay clinicians – especially Indigenous clinicians whose communities are particularly underserved.” 

Deborah Pugh, Executive Director, ACT – Autism Community Training highlights the fears among families:

“The concern is that these centres will warehouse all children with disabilities together, regardless of their individual needs, negating decades of developing individualizing supports in communities allowing families to make choices that fit their child. Indigenous leaders have highlighted this concern which is particularly difficult for families who have experienced the legacy of residential schools, but it is shared widely by families who have experienced rejection from government systems – especially public schools.” 

To speak with Dr. Grace Iarocci and for more information on this report, contact Vanessa Fong at addl@sfu.ca 

For more information on ACT – Autism Community Training, contact Deborah Pugh, at dpugh@actcommunity.ca 

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

blankACT 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.


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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

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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.

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