Last Spring, as the situation for families with autistic children deteriorated, ACT collaborated with researchers at Simon Fraser University to survey the impact of COVID-19 on families in BC. The results of the survey are shocking. They show that the majority of families are extremely distressed. Nearly 40% of the 238 families who responded are concerned about the safety of other family members, largely because of the level of anxiety triggering aggression in their child with autism. Over 60% of families found MCFD supports unhelpful. Families were even more critical of Ministry of Education efforts. The situation has been so difficult, that nearly 10% of those surveyed have considered putting their children in care.
Psychology researcher Grace Iarocci, Director of SFU’s Autism and Development Disorders Lab, is urging the provincial government to better support the needs of children with special needs or risk devastating consequences.
“We knew that families of children with ASD were under tremendous stress, but as researchers we are shocked by the severity of the pressures they were experiencing even before the pandemic and how much worse it has become,” says Iarocci. “Our hope is that the provincial government will pay attention to this data and listen to families and act to provide the support families need.”
Vanessa Fong, the SFU researcher on the project presented her preliminary research results in a poster presentation. Download the poster here (pdf).
The findings of the study – funded by Mitacs, Kids Brain Health Network and ACT – were presented November 12, 2020 at a Kids Brain Health Network conference.
Read the SFU press release: “SFU researchers urge more support for children with Autism Spectrum Disorder during pandemic”
Earlier this week, ACT received an email from a BC mother of a six-year-old with autism who had been turned away from a grocery store. She explained:
“Long story short, we were not permitted to enter a TNT store because my son could not wear a mask or a shield. I did wear a mask and told them about our “mask challenge” and the diagnosis, but they said they didn’t know what autism is and didn’t care to know.
In our everyday life we all meet the problem of autistic awareness (or better said unawareness), but this one was so brutal. I feel so isolated, it feels like there is no place for my son in this world, and I am scared for his future. I think that for adult autistics life is even harder, I feel I need to do something to change the situation.”
I am very sorry to hear about your experience, I know how painful this type of rejection of our children is from my own experiences during my son’s childhood. You are absolutely right to try to find a way of dealing with this to benefit all children with invisible disabilities. One way to handle this would be to get a letter from your family doctor explaining that your son has autism and that he cannot wear a mask. This can be a generic letter that you can use in any situation. Then send the doctor’s letter to TNT’s head office with a letter from you, explaining what happened and request that they inform the store in question that Dr. Bonnie Henry allows exceptions to be made for medical reasons. You could even copy the letter to Dr. Henry! Keep it calm and factual.
Ask the management of TNT to please inform you when you can return to the store and who to speak to when you go to ensure that you and your child are treated respectfully.
Also, here is the link to ACT’s ‘This Person Has ASD’ card. Print some out and have them ready if anyone challenges you. Ask them to contact ACT and we will explain.
I hope that these suggestions are helpful. I would like to hear what happens.
Warmest regards to you and your family.
ACT – Autism Community Training
ACT’s Free Fall-Spring Events Season – available live and online across Canada & around the world
Registration is open for ACT’s free Fall/Spring series of web streamed presentations by speakers who will inspire and inform. This initiative is in response to the concerns of families and individuals across the world, affected by autism and other special needs, who have been isolated by the pandemic. ACT is responding to their requests for practical resources that are accessible from their homes. These free events are open to anyone who is interested, internationally, but the focus is on supporting caregivers. View All Upcoming Events
ACT’s Fall-Spring Season of Free Events has been made possible by the Government of Canada’s Emergency Support Fund in collaboration with the Vancouver Foundation; the Provincial Outreach Program for Autism and Related Disorders [POPARD], as well as our generous individual donors.
Please consider donating to ACT – as little as $10 a month is a great help. Support ACT’s work.
BC Election Disability Focus
As BC’s snap election campaign accelerates, many affected by disability are feeling disengaged, after months of being ignored by the current government during the pandemic, and years of neglect by successive governments. But there is time to ask the candidates where they stand. To help, ACT has put together a special Elections 2020 page. Here you will find links to the excellent resources put together by other BC organizations focused on disability rights in the run-up to October 24, Election Day 2020. ACT is also calling on professionals and para-professionals to speak out for change.
Survey Report: Pandemic Canadian Autism Needs Assessment
Over 1,000 responses to a national survey, carried out by McMaster University this summer, point to the severe impact of the pandemic on autistic individuals and those who support them across Canada. Particularly concerning is the impact on mental health.
BCEdAccess Exclusion Tracker
The hard working volunteers at BCEdAccess have published the first survey result for this school year’s ‘Exclusion Tracker’. Early indicators are overwhelming: schools are failing to ensure that ministry directives are being followed, more parents are reporting that their children with disabilities are being excluded from BC schools.
“[The survey] asked if the school-based teams had made the families aware of the BC Ministry of Education’s direction which stated:
‘Students who require more support in school must have full-time, in-class instruction available without any delays.’
Approximately 85% of our respondents stated NO, their school teams had not provided them this information.”
BCEdAccess’ Exclusion Tracker is an ongoing project. Add your experiences to the tracker here.
Registered Disability Savings Plan Awareness Month
October is Registered Disability Savings Plan (RDSP) awareness month! If you are living with a disability and are under 50 years of age, you could be eligible for up to $90,000 in government grants and bonds through a Registered Disability Savings Plan (RDSP). If you need free help signing up for the RDSP, take advantage of a new program, including specialized supports for Aboriginal applicants. For more information, visit the RDSP website.
Difficulties Receiving Refunds for ACT Events from MCFD? Please let ACT know!
Last week ACT was contacted by a parent who was refused reimbursement by the Autism Funding Branch of the Ministry of Children and Family Development for the registration fees she had paid to attend an ACT event because she had not requested pre-authorization. We were shocked to hear this as for 15 years, and hundreds of events, families have not been required to have pre-authorization from the Autism Funding Branch for ACT workshops and we were unaware that the policy has been reinterpreted.
We have tried to resolve this with the Autism Funding Branch but their response has been to quote policy: ‘This is supported in policy which can be found on page 19 of “A Parent’s Handbook: Your Guide to Autism Funding Programs”, which states “Services are not eligible for reimbursement; only authorized travel, training and equipment purchases may be reimbursed.”’ This means that instead of continuing with the blanket authorization of all ACT events, which all comply with MCFD’s standards, and feature internationally respected presenters. With this change, each year many hundreds of parents will have to individually request pre-authorization for ACT events.
ACT deeply regrets this inconvenience to families, as we know it will put further stress on them and will waste the time of civil servants. Fortunately, most of ACT’s training this year is free. However, ACT does not want any parent to be out of pocket because we inadvertently misled them. So, if you have been refused reimbursement for an ACT event, ACT will refund your fee. If the Autism Funding Branch pays on your behalf, there is no change. Please just send us the email from the Autism Funding Branch with the refusal and we will process your refunds by the end of this month.
If you have any questions about this reinterpretation of policy, the person to contact is:
Community Liaison / Quality Assurance Officer
Ministry of Children and Family Development
BCEdAccess, BC Parents of Complex Kids, Family Support Institute of BC and Inclusion BC have collaborated on a survey to collect feedback from families and their children and youth with disabilities and who have extra support needs, to provide decision-makers in K-12 education with up to date information and evidence to inform actions and accountability.
Visit BCEdAccess for the full results and details.
BCEdAccess released a report highlighting the gulf between the Ministry of Education’s statements and the reality as experienced by students with disabilities: Children with Disabilities Excluded from School During COVID-19.
“BCEdAccess has released the results of its 2019/20 Exclusion Tracker. The total number of parent reports of exclusion of BC K-12 students with disabilities increased by 179% over last year, from 492 to 883.
The full report can be found here: Exclusion Tracker Report July 22, 2020“
This was also covered by Global News.