Coronavirus (COVID-19): Resources for the Autism Community
At ACT we are aware that the current health environment is deeply worrying for many families
in our community, as well as autistic adults, and the professionals who support them. ACT is gathering information
on this page to support families during the COVID-19 crisis, including resources specific to those who are
neuro-diverse and useful general resources. As more become available, they will be shared via this page and on ACT’s Facebook page. We welcome your submissions to
info@actcommunity.ca.
ACT is gathering information from all relevant government ministries to keep you posted
on any resources that are being made available to support families and/or adults
affected by neuro-developmental conditions during the COVID-19 crisis.
The Ministry of Social Development and Poverty Reduction has announced increased supports
for adults receiving Persons with Disability Developments which addresses many of the
specific practical recommendations ACT submitted on March 18th. The
Ministry of Children and Family Development has announced some changes to the Autism
Funding Program, but has refused to extend deadlines for families at risk of losing
their child’s autism funding due to the shutdown of therapy services linked to COVID-19
ACT has received many letters that point out the cruelty of depriving already
marginalized families from being able to use their child’s therapy funding once services
are available. See the community feedback button below for the insights of families as
they struggle to keep their children in stable environments.
February 13th, 2021 Update – Extension of Direct Funded/At Home Program Respite Flexibility
On February 12th, the MCFD announced the COVID-19 interim measures for the Direct Funded/At Home Program Respite program have been extended. Families who receive Direct Funding/At Home Program basic respite can continue to use their respite funding in a flexible manner for another year and do not need to provide a record of respite expense forms for agreements expiring before March 31, 2022. Read the full details on the MCFD website.
Unfortunately, ACT does not know of any moves on the part of the Autism Funding Branch to increase flexibility to allow all families to roll over their autism funding, past their child’s birthday, in light of the difficulties of accessing therapy. This has been especially detrimental for those children who cannot be engaged online. ACT will continue to press MCFD on this matter.
December 11th, 2020 Update – Interview with Minister Dean
MCFD Minister Mitzi Dean was interviewed by The Tyee about her plans for change in the MCFD. The Minister advised her priority is putting in place a new framework for supporting child and youth with special needs. Read the full interview.
The Minster also spoke to the MCFD’s pandemic relief measures, confirming some of the pandemic supports will continue, like increased flexibility over how respite money is used, but the $225 respite support will not return: “We’re in a different situation now than when that relief was issued, the landscape is different, because agencies have managed to create ways of delivering services differently in a pandemic”. Dean’s message for families included, “if you need help, reach out to the ministry”.
December 4th, 2020 Update – Representative of Children and Youth issues report
The latest report by the Representative of Children and Youth (RCY), Left Out: Children and youth with special needs in the pandemic, released on December 3rd, presents a searing analysis of BC’s Ministry for Children and Family Development, not only for their pandemic response, but their successive historical failures of Children and Youth with Special Needs across governments. The grim details of the report by the RCY, who is the watchdog for the MCFD reporting directly to the legislature, will ring true for families caring for children with special needs and those following ACT’s advocacy work in 2020. In the survey that the RCY did of over 500 families last month: “45 per cent of families had no contact with their CYSN worker during the six months (April to September) when emergency measures were in place, and 63 per cent report no contact since measures ended.” The RCY’s report echoes the shocking results of Simon Fraser University’s survey, released three weeks ago, which revealed similar findings of families under such extreme strain, that nearly 10% have considered putting their children in foster care.
Read ACT’s full statement on the release for the RCY Report.
Our thanks to the Representative
Families of children with special needs across BC owe a great debt of gratitude to Dr. Jennifer Charlesworth, the Representative for Children and Youth for bringing together organizations advocating for children across a range of special needs, including ACT, to work with her on this report. Perhaps it is time for advocacy organizations to bring together families across special needs/neurodiversity, a union of families to stand together to demand the therapies and equipment their children need to thrive?
New MCFD Minster Mitzi Dean responds
Minister Dean shared an official response to the RCY Report shortly after its release:” “I share many of the representative’s concerns and agree we need to apply what we have learned from the pandemic experience. This ministry has been working to fundamentally change the system of supports for children and youth with special needs and their families.” Read the full statement.
What is your response to the Rep’s report?
Please email ACT in confidence at info@actcommunity.ca and we will feature your opinions on our website. Or respond via Facebook.
Background: Previous MCFD updates from ACT
June 23rd, 2020 Update – Limited pandemic supports for families extended
MCFD’s June 22nd press release announced its limited pandemic supports for families will continue through the summer. View the full press release.
How many ‘new families’ will benefit?
It is unclear how many new families will benefit from this announcement – whether the 1,300 families who received $225 a month from the Emergency Relief Fund as of April, will still receive it after July 1st when the next round of funding begins. The release refers to doubling but does not specify how much MCFD is investing in this new initiative. MCFD has specified that 30,000 children are eligible for emergency respite funding, depending on their level of need and have left it to social workers to decide.
Minister Conroy’s emergency response focuses on a new service delivery framework
On June 23, 2020, Minister Katrine Conroy, in a CBC interview defended MCFD’s much criticized emergency response record. Many families are reporting to the media and to their MLA’s that they feel desperate and abandoned by government. See ACT’s Community Feedback – Responses from Families.
The Minister defended the lack of emergency funding for respite supports for all families of children with special needs in crisis, by focusing on MCFD’s plan for a new MCFD service delivery framework – which will not be released until 2021.
Unlike other ministers, both provincial and federal, Minister Conroy does not differentiate between the requirement of government to provide emergency support and the long-term issues of policy development. If those responsible for the extended care sector in B.C. had decided to provide a limited emergency response to only 10 per cent of COVID-19 infected care homes for only three months, while they overhauled long-term policy, it would have been a catastrophe.
No New Money – Will clawing back autism funding pay for emergency respite?
A common thread that is running through MCFD’s response is that there appears to be no new money for this huge ministry tasked with protecting the most vulnerable children in the province. The current emergency provisions give families more flexibility in spending the existing limited funding envelopes that they already have, but no new money is being pumped into MCFD. The money that MCFD is clawing back in unused Autism Funding that families can’t spend on therapy could pay for this limited respite many times over.
Details of the June 22 announcement – “Final Round” July 1 to September 30, 2020
This “final round” of the short-term Emergency Relief Support fund, which provides payments of $225 per month for three months to eligible families, will be made available from July 1 to September 30, 2020. Children/youth who are eligible for the Autism Funding Program and the At Home Program medical benefits are eligible for this funding if approved for MCFD CYSN services prior to June 15, 2020. It has not been made clear if families who previously received these payments will be eligible for the second round of support.
When first announced in their April 8th press release, the Emergency Relief Fund consisted of $900,000. The MCFD has not announced what the funding envelope is for this “doubling” of emergency support.
Autism Funding extension still limited
The limited autism funding extension for children turning 6 or 19 has been extended to include children whose 6th or 19th birthday falls between March 15, 2020 and August 31, 2020. These families will be allowed three additional months to use unspent funding. The continued refusal of MCFD to extend contracts for all, because of the disruption to therapy triggered by COVID-19, has infuriated families. Nearly 8,000 signatures have been added to the petition calling on MCFD to reverse its decision. The primary request is that MCFD allow all families of children with autism to have more time to spend their treatment funding, given COVID-19 has shut down most therapy services.
May 5th, 2020 Update – MCFD’s lack of communication confuses families
Due to frustrations voiced by those navigating the MCFD website for information, ACT has continued to collect all relevant MCFD documents and keep them on a special page of our website so families, and the organizations that support them, can track the commitments the BC government makes to our families. Visit Keeping Track of MCFD Documents to view publications to date. On May 5th, many of the documents gathered on this page were removed from the MCFD website. As the information is still valid, ACT will keep these available as a public record.
ACT is also urging MCFD to send parents updates directly through the Autism Funding Portal, and by email for those who don’t use the portal. This information should also be translated. This would allow social workers to prioritize families who do not have internet access to keep them informed. MCFD could also share information via service providers for families who receive medical benefits. We hope that in future MCFD will alert us when they have new information to share with families. In case that doesn’t happen, please update ACT at info@actcommunity.ca, when you see new developments.
This blog written by a behavior consultant who serves highly vulnerable families captures the situation that community-based providers are facing – not all families have the same degree of resiliency and many children cannot be supported remotely. Those who have high needs cannot manage without significant wrap-around support from both schools and MCFD. ACT’s Executive Director Deborah Pugh shared her perspective on the MCFD and MOE response in an April 27th news post: Why is the response of the BC Government to children with special needs so weak? Since then, the situation in the community has not changed, indeed stressors on families are growing.
Is the BC Government listening to families of children with special needs?
There is a growing conviction among families and professionals that Minister Katrine Conroy is
profoundly out of touch. The number one question that families want Minister Conway to address
is why she is refusing to allow a contract extension that would not add costs for MCFD? If she
is not blocking an extension, what arm of government is responsible? Why has the Premier not
stepped in?
Is MCFD trying to balance its books by clawing back autism funding?
Autism Funding Programs cost government $85 million in 2018/2019. In the absence of an explanation, many families believe that MCFD, a chronically underfunded ministry, is using this opportunity to claw back millions in unspent autism funding at a time when the majority of affected families are preoccupied with survival. Ironically, MCFD, which is tasked with protecting vulnerable children, may be the only B.C. ministry that saves money during COVID-19, while these children and their families suffer the most hardship.
ACT’s advocacy efforts will continue
ACT continues to call on Minister Katrine Conroy and Premier John Horgan to provide
clear, compassionate and rapid support measures to families desperately trying to care for their
vulnerable children. We urge families and the professionals who support them to let them know
that this is not the time to focus on balancing government budgets at the expense of the most
vulnerable. To read the letters from families that ACT has been copied on, see Community Feedback on COVID-19.
It is worth acknowledging that the pressure that families are bringing to bear on the provincial
government through their advocacy efforts are having an effect. Families and professionals
should continue to contact the provincial government. The letters we are receiving from across
the province make very real the confusion and distress of families supporting children
with special needs. In contrast, the Ministry of Social Development and Community Living BC have
done a much better job of being compassionate and transparent.
Share your advocacy efforts with the special needs community
We invite the special needs community, including professionals, to share your feedback on ACT’s Facebook Page or by email to info@actcommunity.ca if
they wish to remain anonymous. We have especially appreciated the insights of Children and Youth
with Special Needs Social Workers and we would like to hear from school district staff who are
taking the initiative to provide in school support.
Response from Ministry of Education
July 30th, 2020 Update – MOE releases BC’s Education Restart Plan for September
On July 29th, the MOE announced all BC schools will reopen in “Stage 2” of the 5-Stage Plan for K-12 Education in September. In “Stage 2”, students are to resume in-person instruction while seperated into learning groups of up to 60 students in elementary schools and up to 120 students in secondary schools. View the full Education Restart Plan.
It is stated that students with disabilities will continue to receive full-time, in-class learning – which the BCEDAccess 2019/2020 Exclusion Tracker Survey shows was not the case in earlier stages of the pandemic – however parents and educators expressed concern over how BC’s learning groups will manage educational assistants in a Vancouver Sun article published on July 30th. A deadline of August 26th has been set for all school districts and schools communicate information to parents on “Stage 2” Plans.
Background: Previous MOE Updates from ACT
July 23rd, 2020 Update – BCEDAccess report on exclusion of students wth disabilities released
On July 22nd, BCEDAccess published the results of their Exclusion Tracker Survey for the 2019/2020 school year. This annual report surveys parents on their experience accessing education for their children with disabilities in Grades K-12. The report revealed a 179% increase in parents reporting exclusion of their children from schools. The survey results show that access to education continues to be an issue for BC children and youth with disabilities and the pandemic made the inequity worse. View the full report for more information.
May 6th, 2020 Update – Resumption of in-class learning June 1st, 2020
On May 6th, the Ministry of Education (MOE)announced a 5-Stage Plan for resuming in-class learning for
students from kindergarten to Grade 12. “Stage 5” began when all schools were closed on March
17th and all in-class instruction suspended. All 60 BC school districts are currently in “Stage
4”, with most students accessing instruction online and children of essential workers being
accommodated in-person at schools. In a May 15th press conference, Premier John Horgan, Dr.
Bonnie Henry and other officials announced that “Stage 3” of the MOE’s plan will begin June
1st. This includes the resumption, on a part-time basis, of in-class learning for
students in kindergarten to Grade 5, and access to this for those in Grades 6-12.
Few Vulnerable Students Attending School
MOE has specified that exceptions are to be made for vulnerable students to attend in-person
during “Stage 4”, however it has been left to school districts to decide how to support
vulnerable students, including those with special needs who cannot learn remotely and/or whose
families are not able to cope with their children 24/7. This can be because the children have
very high needs or because the parents are in poor health, or both. The May 15th press
conference mentioned vulnerable students returning to in-class instruction in “Stage 3”, but
provided little detail on how this will be enacted and noted specific actions will be determined
by each individual district.
The response of individual school districts has been slow. As of May 6th, according to MOE, only
300 students with high-learning needs were attending in-class programs province-wide, although
there are over 77,000 students with identified special needs in the province. The majority of
these 77,000, who include gifted children and those with learning disabilities, can follow
instruction online – as can many children with autism. While it is difficult to calculate how
many students are no longer receiving any educational support, it is likely to be at least 5,000
and in all probability, more like 20,000. Premier Horgan has said BC is preparing
for a full resumption of school by September.
Little Evidence of an Effort by MOE & MCFD to Provide Wrap-Around Support
MCFD representatives have repeatedly stated that they are working with the MOE to get vulnerable
students back in the classroom, but ACT has seen little evidence of wrap around services being
offered. A MCFD Policy Bulletin posted April 30th provided guidance to MCFD staff for exploring
collaborative approaches with school district personnel where children may “benefit from
in-school supports”. It states: “At a local and regional level, MCFD/DAA staff should contact
their local school district staff or school principal to facilitate a coordination of services”.
In the meantime, MCFD, which has identified 30,000 families as eligible for Children and Youth
with Special Needs services, has done little to provide support. Its ‘Emergency Fund’ provided an additional $225 a month in
respite funding to fewer that 5% of families eligible for services.
April 3rd, 2020 Update – MOE joined MCFD for Q&A teleconference
On April 3rd, a MOE representative answered questions from the community as part of the MCFD
teleconference with families. ACT’s notes from MOE’s portion of the call are being shared to
fill an information gap. The recording of this call has not been shared by the MCFD.
March 27, 2020 Update – Joint Letter from Minister & BCCPAC
The B.C. Minister of Education and President of the BC Confederation of Parent Advisory Councils
sent a letter via school districts on March 27th, with
specific information for families.
A special website ‘Keep on Learning’ was launched by MOE on March 27th with many
excellent resources.
MOE has released Frequently Asked Questions for Continuity of Learning.
“Section 3 – Support for
Children with Disabilities and Diverse (Special) Needs” addresses the concerns of families but
there is little detail as yet. MOE has promised to keep their website updated as new information
becomes available.
Response from MSDPR & Community Living BC
The Ministry for Social Development and Poverty Reduction (MSDRP)
is responsible for providing a wide-range of services and funding for adults with disabilities,
including those who are living independently – often in poverty. MSDRP funds the Crown
Corporation Community Living BC (CLBC) largely for those who also have
intellectual disabilities. From the early days of the COVID-19 crisis, CLBC has been providing timely information on its website.
On April 2, the Minister of Social Development Shane Simpson, announced increases in financial
support for adults receiving disability or income assistance benefits. Read the details of the announcement here.
On April 21, CLBC announced that provincial emergency COVID-19 funding will be distributed
through CLBC to ensure people with developmental disabilities stay supported and safe during the
pandemic. As part of the B.C. Government’s $5-billion COVID-19 Action Plan, up to $35.6 million
will be available over three months from CLBC to support service providers to continue
delivering residential services, including group homes, home sharing and supported independent
living that about 9,500 adults with developmental disabilities count on. Read the full press release for more details.
Minister Simpson, MSDPR and CLBC have committed to hosting a series of teleconferences to address
questions from individuals and families during the pandemic. Recordings of previous
teleconferences and plain language summaries are available at Information about the Novel Coronavirus (COVID-19). Visit the
CLBC website for information on how to participate.
Practical Advice for the Autism Community from Dr. Anthony Bailey
Dr Anthony Bailey, Professor and Chair of Child and Adolescent Psychiatry at the
University of British Columbia is well known to the autism community. Dr. Bailey has
kindly written an article for us that is helpful as we all struggle to support our
families in this time of uncertainty.
View Full Article
Worldwide, families are experiencing a sudden change in their life situation. Nearly a billion
children are out of school. Recreation centres, restaurants and cafés are shutting their doors,
many workers are being sent home or laid off, and in some countries the entire population is
being asked to stay at home. There are numerous reliable sources of information about COVID-19
in the mainstream media and on government websites; the purpose of this brief piece is simply to
draw attention to some issues that might crop up in families affected by ASD.
One of the clearest relevant fact sheets about the virus is written by a colleague https://cpa.ca/covid-19/, who draws attention to how anxiety
and fearful reactions are contagious and can be counterproductive in managing the current
situation. Helping individuals with ASD get through this disruption in part relies on our own
ability to stay calm and to model sensible behaviours; indeed, as at other times, strategies
that are helpful for people with ASD are often beneficial for us all.
The closure of public and private places to decrease the risk of viral transmission is disrupting
many family routines, which by itself is stressful, often particularly so for individuals with
ASD. Consequently, it is helpful to almost everyone to keep to as many old routines as possible
and to substitute new ones if necessary. Sticking to the usual sleeping and waking times, and
planning to vary meal times as little as possible, keeps the normal reference points of our day.
Getting dressed, even if we are not expecting to leave the house, also keeps us in touch with
our usual behaviours.
With regard to youngsters who may be out of school for quite some time, we don’t know yet just
how much use the different school boards will make of remote learning, but this may be slow to
kick in, or only keep children occupied for a limited number of hours. So, it may be necessary
to arrange some types of home-based structured activities in order to minimize the possibility
of more time spent on repetitive behaviours or obsessional interests.
When both parents are at work, or in working single-parent households, it may be possible to ask
for help from local older teenagers who are out of school, or indeed from adults who have been
sent home from their own jobs. Of course, this could be the moment to encourage children and
youth to play their part by helping with every day household tasks and acknowledging their
contribution. For some individuals it might be appropriate to help older people in the community
who are staying at home, perhaps by running errands, walking dogs, doing yard work etc. These
strategies may not be relevant for some less able individuals, and although individual
therapists may have to cease their contact with child and youth clients, their expert knowledge
about the individual can still be tapped for suggestions for appealing activities.
Many people are anxious about contracting the virus. Additionally, the pandemic is figuring so
prominently in the media that it is very hard to resist the temptation to update ourselves far
too often. If this is a problematic behavior for someone with ASD, then a helpful strategy can
be to suggest checking on the news just once or twice a day; but if that fails limiting access
to electronic media may be helpful, although possibly liable to cause some friction! There is
also the potential for repetitive questioning about the pandemic, or an overdeveloped sense of
risk or vulnerability, particularly in individuals who already worry about their health or have
OCD. As with other types of repetitive questioning, it can be helpful to allocate a limited time
at a fixed point in the day (after the evening meal often works well) when questions can be
asked and answered.
Many individuals with ASD prefer certainty, whereas at this stage of the pandemic so much is
uncertain. Providing false reassurance nearly always backfires, and it is generally more helpful
in the long run to say when some things are unknown, such as when life will get back to normal.
We can, however, be clear about some things. COVID-19 is unlike the worst pandemic of modern
times -the Spanish Flu of 1918. That influenza outbreak was particularly virulent in young
adults, whereas the vast majority of younger people who contract COVID-19 will have a relatively
mild illness. The reason that governments worldwide are taking such far-reaching precautionary
measures is to protect the elderly and people with serious medical conditions, who appear to be
particularly vulnerable to developing a severe illness. That is why visits to or by grandparents
are being discouraged, but we can still stay in touch by phone or other media. For younger, or
less verbally able individuals, Social Stories can be an effective way of explaining why
something invisible has had such a big impact on our lives.
This morning when I asked a family member who is also a lawyer, what areas of legal work she
thought were likely to increase because of the pandemic, she immediately replied Divorce! We are
not use to being cooped up with our families for so long and sometimes our nerves can start to
fray. That makes it particularly important to create some personal space for each family member,
but also to make sure (whilst we are still allowed) that we all leave the house for a reasonably
long period of time each day. Exercise is an effective stress reducer and we can still take it
whilst maintaining a reasonable physical distance from other people.
We are fortunate to be living in a highly developed country with a good health system. For the
overwhelming majority of us the stories we will tell about this period in the years to come will
be about our individual privations and our ingenuity, rather than the effects upon our physical
health. We need to keep upbeat and take good care of ourselves if we are going to help
individuals with ASD get through the pandemic without too much stress.
Hide Full Article
Anxiety, Autism and COVID-19 Resources
During this time, many of us are experiencing increased anxiety levels. This can be
especially difficult for individuals who have social-communication challenges. Anxiety
is a particular problem for autistic individuals across the age range but is often
unrecognized. The resources gathered below may be of help.
Includes advice for talking to children about COVID-19, social stories, visual aids,
tips for coping with isolation, and ideas for engaging children at home.
View Resources
Back to School Resources
While challenging at the best of times, the pandemic has left many families confused as to how to best support their child’s learning needs while keeping them and their families healthy. ACT has gathered resources which we hope will be of assistance to families, and the professionals who support them: Back to School Resources.
Free access to Help is in Your Hands – online learning modules for
families of very young children with social communication challenges. Includes: Increasing
Children’s Attention to People, Communications, Joint Activity Routines and the ABCs of
Opportunities for Learning.
Brain POP
is extending free access to families at home during school closures
As of early May 2020, publicly funded assessment centres, such as the BC Autism
Assessment Network (BCAAN) provincial hub at Sunny Hill Health Centre for Children,
are allowing portions of assessments to be done remotely. However, families still must
wait for an on-site assessment to complete the diagnosis when it is allowed by the
provincial Public Health Officer. While waiting, the resources gathered here may help
families prepare and approach early
home-based interventions.
View Details
COVID-19 Increasing Pressure on Families
Before the pandemic reached British Columbia, the wait time for a BCAAN assessment was
up to 60 weeks. The long wait times for publicly funded diagnosis have pushed many families to
seek a private diagnosis where the costs are in the range of $3,000 – $4,000. The further delay
is now putting intense pressure on families awaiting diagnosis. Autism Information Services BC, funded by the Ministry of
Children and Family Development, provides a listing of qualified private diagnosticians and more
information such as Waiting for a Diagnosis. However, families should be prepared
to wait even for private diagnoses as those are also on hold. Please keep checking the Sunny Hill Health Centre site for updated information on BCAAN
assessments.
Learning about Autism
We encourage families awaiting assessment to learn more about Autism Spectrum Disorders and
British Columbia’s infrastructure for supporting families.
ACT’s Autism Information Database (AID) is a curated library of
evidence-based information resources searchable by keyword. We encourage families waiting
for assessment to search the AID to learn from credible information resources on autism, the
diagnostic process and interventions.
Autism Videos @ ACT is a library of 60 free online
presentations by internationally recognized autism specialists available for free with no
password required.
Follow ACT’s Facebook Page for carefully sourced insightful stories,
ranging from research and government policy, to the world of entertainment, culture, and
lifestyle.
General Waiting for Assessment Guides for Parents
The following resources are basic guides with suggestions for what you can do while you wait for
your child’s assessment:
Autism BC is hosting free “Waiting for Assessment” workshops for families in British Columbia. During COVID-19, these workshops have been offered online via Zoom. View the workshop flyer or visit their Waiting for Assessment Workshops page for more information on workshop content and upcoming sessions.
What To Do While Waiting to Encourage Social Communication
Whether your child is ultimately diagnosed with autism or not, they must be showing signs of a
communication and/or social delay or they would not have been referred. Many children do grow
out of these delays, but research has demonstrated that parent involvement can really help young
children progress. This is not a matter of whether or not parents want to engage with
their child; often parents have tried for many months and feel defeated because of the lack of
success. Families need pointers on what to do especially as children who are later diagnosed
with autism are often very difficult to engage.
ACT has gathered the resources below to support families who would like some tips on what to do
while waiting, whether for the pandemic to recede or to come to the top of various waiting
lists. It is ideal if a professional, preferably who knows the child, acts as a coach even if
remotely. What we are suggesting below is a more sharply tuned approach to parenting. We are not
suggesting that the parent become therapists. For children who have a language delay these
resources will generally be easier to implement. For
those who go on to be diagnosed with autism, it is often harder for families, but the techniques
are the same. They are play based and are fun!
Autism
Navigator is a unique collection of web-based tools and courses that uses extensive
video footage to bridge the gap between science and community practice.
The Early Start
Denver
Model is a relationship-based early intervention model created to work with very
young
children with, or showing signs of, Autism Spectrum Disorder (ASD). Interacting with Autism: ESDM contains several videos
describing the various facets of the ESDM and PDF versions of several research publications
about the model.
What to do about Challenging Behaviors – Positive Behavior Support is Key!
The resources below focus on helping families re-consider the challenging behaviours that some of
their children engage in. Usually these behaviors occur because the child is frustrated as they
do not understand and can not communicate what they want. The approach of Positive Behavior
Support (PBS) is very helpful to change a negative dynamic in the home and ACT has a number of
free online videos that can help families understand how to support their child with practical
information that is parent-friendly. While you may need more professional support to really take
advantage of this approach, watching these videos will help you become a better informed
consumer of professional services.
Residents of British Columbia can find updates from the BC Centre for Disease Control on their COVID-19 page. Download the COVID-19 BC Support App and
Self-Assessment Tool to receive the latest updates, trusted resources, and alerts. The
Self-Assessment Tool is built in.
SOS, mon
orthophoniste est confinée! – blog d’orthophonistes obligées de fermer leurs
cabinets pendant cette période de confinement et qui proposent aux familles de leurs
patients des activités à intégrer au quotidien, peu contraignantes, pratiques.
La Vitrine – des outils, des idées et des astuces pour les
familles afin de les accompagner dans le cheminement scolaire de leur(s) enfant(s) durant la
fermeture des écoles.
Des défis techno-créatifs pour le primaire – Classe de
sciences
Consejos sobre cómo hablar con los niños: Consejos para los
cuidadores, padres y maestros durante un brote de una enfermedad contagiosa – SAMHSA
(Nota: SAMHSA es una organización en los Estados Unidos. El número de teléfono proporcionado
es estadounidense)
Consejos para lidiar con medidas de precaución durante un
brote de una enfermedad contagiosa: distanciamiento social, cuarentena y aislamiento –
SAMHSA (Nota: SAMHSA es una organización en los Estados Unidos. El número de
teléfono proporcionado es estadounidense)
Prevention: Wash your
hands, cover your mouth and nose when coughing or sneezing, and stay home when you’re sick.
Symptoms: Reported signs and symptoms include: fever, coughing, and/or
difficulty breathing. If you think you are experiencing symptoms of COVID-19 you can try
this quick, online self-assessment tool.
Experiencing symptoms: If you think you have symptoms of COVID-19 (for
example fever, coughing, and/or difficulty breathing), please stay home, and self-isolate
for 10 days after the initial start of your symptoms. After 10 days, if your temperature is
normal and you feel well, you may return to your routine activities. Coughing may persist
for several weeks, so a cough alone does not mean you need to continue to self-isolate
beyond 10 days. Please seek medical care if respiratory symptoms worsen.
Travelling outside of Canada: An official global travel advisory is in
effect. Avoid non-essential travel outside Canada until further notice. Visit the Government of Canada’s website for the latest
travel advisory updates.
Health questions: If you have health concerns, call HealthLink BC at 8-1-1.
Please be patient as they are experiencing high call volumes. For non medical information
about COVID-19 Call 1-888-COVID19 (1-888-268-4319) or text 604-630-0300 from 7:30 am to 8
pm.
Source: Vancouver Coastal Health
Special Needs Organizations responding to COVID-19
ACT has created this listing of organizations that are actively advocating for provincial and federal
governments to meet the needs of Canadians with disabilities.
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Parents Questions to Ministries
Questions submitted for BC’s Ministry of Children and Family Development (MCFD), Ministry of
Education (MOE) & Ministry of Health (MOH) conference call Friday April 3rd, 2020
Thank you for taking our questions regarding support for children and youth with special needs
during this unprecedented time. My question is regarding respite funding and AFU funding
periods. Is MCFD and the AFU considering lengthening the funding periods to account for lost
therapy time and lost time to have respite workers come in during this period of social
distancing? Would love to see this funding year rolled into the next for both AFU and respite
programs. Thank you in advance.
Because of physical distancing measures, out BI/tutor cannot come to our home for intervention.
My 20-year-old cousin lives with me (she has aged out of care). She is competent and capable of
facilitating BI sessions and tutoring and general play and social skills with my 9-year-old son
(ASD). Can she be a service provider and invoice AFU- MCFD and be paid out of my son’s funding?
She is also providing childcare when I have towork (Skype meetings for work). Can I submit the
information on the portal and get her set up? My second question is whether or not there are
conversations happening with the Ministry of Education. We all know that funding for ASD goes
down to $6,000 when our children turn 6, as there is the expectation that schools will meet the
needs of our children. Before my son was 6, we had a somewhat sufficient amount for SLP, OT, PT
and ABA programs. Within class school being suspended, I’m hoping that the funding that has been
allocated to our children will be directed to them in the form of in-person one-on-one sessions
online or in-person, speech therapy, etc. I’m hoping the ministries talk to each other and that
funding that resides with Min of Ed for our special needs designations can be reallocated to
MCFD to manage or directly allocated to the child. I’m extremely concerned now more than ever
that this crisis will lead to our children with disabilities being forgotten. Thank you for
listening.
Thank you so much for taking your time to answer parent’s questions. As we all know, this is
hard time for our children with disabilities. I personally, have two girls with anxiety and ASD.
I would like to know how MCF can support them in this situation. Stuck at home make it worse,
even though I do everything in my power to keep them calm and busy. Today my Daughter said I’m
going to hit myself until I die so I get out of this place! Kind regards.
Will the current yearly Autism funding be rolled over into the next year? As many families will
see some of their current AFU funds go to waste, due to having services cut, despite said
services being listed as Essential services in BC.Will more direct direction be given to
District’s and Teacher’s as to the plans going forward with this new hodgepodge version of
Education? Will Direct funded Respite funds be adjusted so parents may use those funds
themselves to provide for their children, as respite care workers are no longer available
despite being named an Essential service?
Will mental health services be made more readily available to the large amounts of parents of
neurodiverse children (Autism, ADHD, ODD, OCD, BP and so on) now facing caregiver burnout, as an
imminent threat to their health & wellbeing? It is a concern without COVID 19 and with
supports in place. Now it is an imminent threat with COVID 19 and no supports available (respite
workers, EA’s, in class education, etc…). And what are you all doing to mitigate the imminent
threat of said caregiver burnout? Will RCMP detachments be provided required training to respond
to calls involving neurodiverse families, as there is now a high likelihood that their services
will be necessary, more so than before COVID 19? Will protocols be adjusted for the needs of
neurodiverse children and youth who heaven forbid end up in Hospital with COVID 19? As in the
rule of one parent in and out, not allowing food to be brought in, and so on. Thank you.
I am a parent of a high school student with autism. My husband and I are both essential care
workers who work day- My son is attending a day program through a community living program
currently. Is the fee for this program going to be funded through the government? Is there a
funding source I need to apply for? I am being asked to pay for April and normally would be in
public school during the day at no cost. Also, what educational opportunities will be available
for these kids who need an EA to assist with learning? Thank you.
I am a parent of a 5-yearboy with ASD. I have had no response from the Autism Funding Unit with
my question and so I’m really hoping you can answer it! My son will be turning 6 on April 10 and
our yearly funding drops to $6000 on May 1. Because of all his service providers cancelling his
therapies due to COVID we will have upwards of $1800 left over at the end of April. This funding
money is precious to us as we do not have the financial means to pay out of pocket for services.
Can our funding please roll-over into the new billing year? We’ve already been worrying how we
will make ends meet and get him the therapy he needs once the funding goes down. Not having to
lose this unused money would help us a lot! This is already a difficult time and having a child
with special needs who is not getting the therapy he needs to be regulated is incredibly
stressful. Any help from the Government and Ministry would be so much appreciated. Thank you!
We have question about our son’s funding. We are in BC and our son will turn 5 tomorrow so his
funding will be cut off by the end of the month but he still has almost 6000 worth of funding
that we allocated to his therapy service but due to the COVID-19 everything has been shut down
including his service provider service. There is any way that government of BC can extend the
time for us to used up the funding or roll the remaining balance on top of next year funding. We
have tried to sign up for at home service by sign up the agreement but a week that we suppose to
get the service at home they also, cancel due to health concern. Thank you.
I would like to submit the following question to the teleconference Friday afternoon:Given that
the current pandemic situation has led to numerous parents being unemployed and/or having
reduced income to pay out of pocket for therapies, would the ministry consider a change to
administration of School-Aged Extended Therapy (SAET) funding via the At Home Program? Families
are currently required to find the funds to pay for the portion of their sessions that is not
covered by At Home Funding. Typically, this leaves the family responsible for paying $40-70 per
hour of therapy time. If the ministry were to shift the way payments can be made, so that
therapists could bill their whole session fee to the At Home Program, this would allow families
to access therapies without the worry of finding the funds to supplement each session. Thank you
for your consideration of this matter.
Thank you for the opportunity to address questions to staff in MCFD, the Ministry of Education,
and the Ministry of Health during today’s joint meeting. We are a family with 3 complex
children: 2 with ASD/ Generalized Anxiety, and the third with ADHD. During this COVID-19 crisis
we have gone from having a village that we have strived and advocated for over years in order to
help our children cope and even thrive, now reduced to a single thread held by just us
parents. Our family of 3 children requires 2 FT adults to ensure
safety, and usually equilibrium is reached by physically separating our boys into different
locations through the week with the support of resources but this is not currently possible. Our
usual supports include a school team (including 1:1 aide), Autism Funding, Supported Child
Development so our kids can attend afterschool care part-time, municipal supports to help the
kids attend spring break or summer camps, and respite, as well as grandparents, and home team
with BCBA, BIs and other therapists. Other than remote access to our home team, these supports
dropped off completely and until yesterday no one – most disappointingly MCFD – had reached out
with any kind of plan or reassurance. Keep in mind that disruption occurred for many families
like ours weeks ago when carefully planned spring break activities with appropriate resources
were cancelled. I am using up vacation time but will likely have to take a leave of absence from
my career to care for my kids, in addition to hiring someone else full-time to help, so that my
husband can continue bringing in a salary. We feel very lucky to have found an ASD-trained
caregiver to come to our home FT, but it is at a cost to us of nearly $4k/month on top of
potentially losing my income. I have tried contacting our social worker for more information,
and her response was: “We have received no information about additional support to families or
any information to share regarding the issues you bring up.”
My questions for MFCD are:
What economic remedies are there for those families who need to bring in additional paid
support into the home (beyond a parent caregiver)?
Many workplaces are providing continued salary for parents who need to stay home to care for
relatives who are ill orneeding to self-isolate. What can you to do advocate for these
workplaces to also extend the same benefits for parents who need to stay home to care for
children with complex needs whose community supports are no longer in place?
What measures are in place to provide respite for parentshome 24/7 with complex children
with severe medical or behavioural challenges?
What solutions are there for when additional care workers choose not to come, or
self-isolate and are unable to come, or are mandated to stay home?
What happens for families with complex care issues when a parent becomes sick and needs to
self-isolate or be hospitalized, and the other parent can notsinglehandedly meet the needs
of the children? Would the children be taken into care? Someone sent to the home to help?
Would these people-solutions be trained in autism-appropriate interventions?
And for that matter, what measures are in place to help any single parent who may become ill
and who doesn’t have additional support? What a frightening prospect not knowing who will
take care of your kids if you get sick.
Will AFU funds be extended past year-end for families whose annual cycles are approaching
and whose important early-intervention therapies have been put on hold?
Questions for Min of Ed:
We have heard that some school districts are providing in-school support to vulnerable
children, alongside children of front-lineessential workers. Will the province ensure that
this includes families who are in need of respite due to complex medical or behavioural
challenges, and will this happen equitably across all districts in the province?
Will there be acknowledgment and accommodation that many children with complex diagnoses are
not able to effectively learn online, and what measures will be put in place to help them?
How will the funding that is directed to school districts to help complex learners (iean
additional $16K annually for children diagnosed with autism) be deployed to aid in the care
and education of these children?
And finally, for both MCFD and MinEd: Extraordinary economic and other measures are being rolled
out provincially and federally to support everyday Canadians to weather this crisis. At the end
of all this, what will you have learned to help better support families of those with
disabilities who face similar challenges every day without appropriate supports?
After 3 different meds for my daughters ADHD and aggressive behavior we finally found one that
works, intuiniv. Unfortunatelyit is also one of the few that there is no financial help from any
agency, no medical company coverage and no generic brand. Meaning we are paying roughly $1680 a
year. For low income family this is hard to manage
I have time sensitive questions on services and supports for my son with special needs and our
family in light ofthe COVID19 pandemic. My son’s funding year ends next month, and we had
planned on a intensive toilet training therapy week in April with a Behavior Consultant and
Behavior Interventionists to use up the remainder of his funding this month, but that’s not
going to happen now with social distancing and keeping my son healthy. My son will be 10 years
old. Toilet training over Skype or other online meeting platform is grossly insufficient for
anyone, but especially a non-verbal compliance-avoidant child who is an elopement risk. Can
remaining funds be rolled over into the next funding year to be used once this worldwide
emergency and isolation instructions have been lifted? Please. I do not envy your position and
the administration required. But please, help? Please let me know as soon as possible. Thank
you.
I’d like to know how my son, who is diagnosed with ASD/OCD/ADHD, has received $0 in funding for
the past 3 years. He was diagnosed 3 years ago and has never received any of his $19k school
funding EVER. The superintendent’s exact words were “You need to stop thinking of it as Mason’s
funding”. How does this make any sense? This is robbery, plain and simple. It is Mason’s
funding, he has the diagnosis that requires supports, yet he can’t get any supports. The system
is failing my son.
I understand that here is a teleconference specific to those supporting children with special
needs. I want to express how challenging things are for families with children with special
needs, specifically the population of children I support — those with more intense behaviours
and who have more severe autism. Families have been left out in the cold again, with no offer of
support. Families have called their social workers, and have called the Autism Funding Branch,
to no avail.
Please understand what they are going through:
Children are not home 24/7, with no access to the community, playgrounds, anywhere to burn
off steam and energy.
Parents have just had their only support systems yanked from under them — any therapy they
had going previously, or respite, which provided a break to go grocery shopping, or just sit
and breathe, has been taken away.
Professionals, such as myself, are having to resort to recommending medical sedation for our
clients, to reduce the risk for burn out for our families. Single parents in particular,
areat risk.
To top this all off, families are being told their autism funding cannot be extended. So,
despite the fact that they cannot have therapy take place, they’re also being slapped in the
face with not being able to transfer their funding to the next funding year, and instead are
losing thousands of dollars’ worth of therapy for their children.
Schools have been closed down— we know how difficult just spring break & winter break
are for these children. Lack of routine, structure, support, is what helps them cope with
the world.
With schools shut down, neurotypical children are able to access their teachers and online
learning. Our learners with autism are not able to learn in this same way. Many have cognitive
impairments as well as autism, and they are not on the regular curriculum stream, but are
following their own IEPs with the support of an EA / SEA. So not only have families lost their
ability to send their children to school and have a reprieve from behavior for a few hours, they
also have children who no longer are able to learn. They again have been forgotten about and we
as a society are showing where our priorities are. It’s sickening.
Specific questions I have:
Will the autism funding branch provide blanket extensions for all children who receive
funding, for a 6 monthperiod? It would be an administrative nightmare to just extend
families who call in, and frankly, those who require the extension cannot make phone calls
while managing their children’s behaviour at home. It would be easiest to just extend
everyone’s funding year by 6 months.
Will EAs / SEAs be able to work 1:1 with children either in the school or at home (if immune
compromised), so their learning can continue, just as all other children are being provided
with some sort of education? Many parents are not equipped to teach their children with
special needs and require the support of these specially trained individuals.
Will families be provided with funding, if they are working from home, or if in dire needs
(due to their child’s challenging behavior), to hire one person to provide support in home?
Just as those through CLBC are able tocontinue to have supports in home.
Something needs to happen soon for these families in crisis, or we’re going to have more
deaths on our hands, and not because they’ve contracted Covid-19. Families are in a place of
desperation and not having any answers or anyone to turn to for support is putting many
parents into a new level of burnout, never before
I am the mom of 2 young Autistic boys living in the Lower Mainland. I am grateful to hear that
MCFD is finally ready to address the thousands of parents who have been asking questions
regarding supports for our special needs families and very importantly what is happening with
Autism Funding during this unprecedented time period.As I’m sure you are very aware, all
therapies and services are effectively canceled at the moment, and while some service providers
are offering online/zoom chat sessions, this does not work for a large majority of our kids.
They need in person sessions for multiple reasons (may have inability to sit still and watch a
computer screen, may need physical (hand over hand) therapy, distracted by household stimuli,
may be triggered by not being physically present with their therapist like usual, etc). These,
and many more, are barriers to effective therapy and to ask families to force their kids to do
this or risk losing their Autism funding for the year (due to the end of their contract) is both
unethical and lacking in compassion for the current situation. Many kids are highly dysregulated
by this humongous disruption in their daily routine and trying to implement a change like this
is impractical for them. As a result of not being able to continue with regular therapies, many
families are in jeopardy of losing substantial amounts of Autism funding, for some people
amounts exceeding thousands of dollars, because their child’s upcoming birth date means their
contract will expire at the end of April, May or June. As AFU has placed a limit on the amount
of funding you can use towards equipment (20% of your total funding amount), families have
little to no options to use that funding before it expires if they have already reached their
20% limit and are unable to access online therapies. My son has a birthday in 2 weeks and
currently slatted to have his funding reset on April 30th. He is part of the over 6 years
funding which gives a far too low amount of $6000 per year as schools are supposed to be
providing school aged therapies and EA support. I don’t know if MCFD (or the BC Government) have
their heads in the sand but there are no therapies offered to the majority of Autistic kids in
school. If you are lucky enough to be granted an assessment, any resulting findings are placed
into a summary report with a list of suggestions that the teacher is somehow supposed to
implement; there are no direct therapies happening. That means that the burden of providing
therapies (such as OT, PT and SLP) falls to the parents of these children outside of school
hours. Do you know how far $6000 stretches when each individual therapy costs $150+ per hour per
therapist?? Not very far. Nearly all families with one or more children with special needs are
living in debt from having to pay for therapy services out of pocket when their yearly $6000 of
funding runs out after 4 or 5 months. I can’t afford to lose any single portion of his yearly
funding amount. We are a single income family with 2 Autistic children using Over 6 age funding,
and our therapy costs are ridiculous. We are forced to choose between 1 therapy or another as we
can’t afford both, certainly not all 3 of OT, PT and SLP plus a Behavior Consultant and Behavior
Interventionist, that they both require all of!
Please consider extending the end of the funding year for all children with upcoming birthdays
during the COVID 19 crisis. Allow families to use more than the allowed 20% of funding to buy
extra equipment to use while home therapies are cancelled. And outside of this crisis please
look at increasing the amount of Over 6 age funding, it is NOT EVEN CLOSE to enough to properly
support our children, and is causing major debt and financial stress to families who already
endure enough stress on the day to day. Thank you for your consideration.
I am emailing as a concerned parent of children with both ADHD and ASD.
Supports seem to have been swept out from underneath us. We are left to handle things on our own
without any guidance nor support. Not for parents nor for their children. Schools were a place
of support for some kids, in addition to self-regulating activities such as team sports, camps,
rec centres and playgrounds. My so/ art therapy and social groups have been cancelled and while
it took him a while to get used to those outings, he had finally started to look forward to
them. Transitions are hard to manage on good days, but stress and anxiety make things much, much
harder to manage. Especially with no resources and no help. What is this government doing to
help families like ours who are struggling? Working and learning from home is practically
impossible! Your government has helped business but we feel like we’ve been left behind… If
the schools were receiving funding for supports, we should be able to access them from home. My
child with adhd is hyperactive and needs his sports. He’s also very social and needs his
friends. He can’t do either. How will you help? My child with ASD is needing to access
resources online, yet AFU has denied him a laptop. He had finally started to come out of his
shell but his anxiety has come back full-force and he struggles to take showers now. All he
wants to do is play video games as those alternate universes is easier to cope with than his
current real life situation. Kids with neuro-diverse needs have been left behind and are
struggling. Their families are struggling to cope. How can you help us through this? Thanks for
your attention to this very important matter. Best regards.
District special education teams would like guidance on effective supports for students with
autism and severe problem behaviour to self and others (e.g., self-injurious behaviours,
elopement, and physical aggression). How schools effectively work can with students who require
intense physical intervention, and who in the Ministry can support these families in their
home?I am the grandmother of 2 Autistic children living in the Lower Mainland. I have watched my
daughter struggle over the years to provide adequate supports for my 2 grandchildren based on
the minute amount of funding they receive per year. During the current pandemic, she has
struggled to be able to provide ongoing support for her boys as all therapies are cancelled and
they are not able to attend to online therapy sessions. This is having a dramatic effect on the
children and stress for my daughter as my grandson has an upcoming birthday this month where he
stands to lose the unused remainder of his funding. I would ask that you consider allowing an
extension to all children with upcoming birthdays to allow them additional time to spend it
after the crisis settles and they are able to return to regular therapy sessions. I also request
you allow them to use more than the allotted 20% toward equipment to help support routines at
home while home therapies are canceled. Sincerely.
Hi, we have an almost 9 year olddaughter on the Autism spectrum and we would love to know what
assistance or thought has been to put in to help these poor kiddos. They cannot receive therapy
during the pandemic nor go to school and they strive on structure and regress easily. How are we
going to make up this lost time! The school district is getting our funding right now and we are
getting zero from them, there is no way they can support special needs kids from a distance, the
EA’s are the crucial part of their day when they are in school. Can we carry funding over from
this year? Normally we are not allowed. We would love to see the funding that the school gets be
reallocated to our funding pool for therapy once we can get back to this, we will have a lot of
time to make up & the $6000.00 we get for a year is peanuts. We really need more to begin
with let alone when we are playing catch up. How are parents supposed to work through this? I am
an essential care worker, a nurse actually and there is no daycare that will take my daughter
without a support worker, but we are not allowed to provide our own, let alone try and find one.
This is the same issue we run into every summer, there are not enough community run programs for
our kids who deserve it just as much as any other kids. Will there be wage subsidies for parents
who can’t work but should be, because there is no childcare for special needs kids. Thanks for
taking these things into consideration it’s a very hard time and I hope you know how much extra
stress this puts on our families!
I realize these are unprecedented times amid the chaos COVID-19 is causing. I am a mother with
two little boys, …. on the spectrum. My first son also is Dyslexic and has not yet learned to
read
despite several hours of one on one support both in school and additional private tutoring.
My second son also suffers from Pathological Demand Avoidance, a disorder that exists under the
Autism
umbrella and which makes simple asks so anxiety provoking he becomes violent, self- harming,
hurting others or destroying what is around him. They are both complex little boys with high
needs. With the school closures and the new normal for learning being remote, I fear my boys
will be left behind as an array of teaching and behavioural strategies are required to engage
them successfully in learning. Interacting on screen is often a trigger and thus such virtual
learning is not accessible to them. When our private reading tutor transferred to online
services, she was the first to recommend suspending lessons as this platform would not support
my son’s learning needs. During this time when the roles of teacher, EA, SLP, OT, LST, BI,
counsellor and caregiver fall on the shoulders of parents, it is imperative that we have what we
need to support our children as they navigate these new ways of learning and also help them
regulate in a time when their worlds have been turned upside down. Without our school and home
teams standing beside us, without access to playgrounds and all the sensory inputs of swinging,
hanging and climbing that are integral to well-being, without structure, consistency and a lot
of unknowns we need more tools. We need more training. We need more resources to fill these huge
voids and create bridgesso our children aren’t left behind. Many of our ASD families have ample
AFU funding that we are unable to utilize with so many services closed and online continuance is
not an option. Many of us will lose this funding that makes it possible for our children to be
their best selves, overcome their challenges and develop their gifts… gifts our world needs now
more than ever. With all of this in mind, I ask that any unused AFU funding please be rolled
over into the next funding year so that when the pandemic is finally over, we can gather our
teams and raise our kids back up. I also ask that during this time, that parents please be able
to access a greater portion of their funding to purchase supplies as we tackle home schooling
and offer more in home I also ask that approval for such purchases please be expedited as we
need to start now.
