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.

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Advocating for B.C. Families

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.

View the most recent updates See ACT’s Tips on Advocacy View community feedback
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Response from MCFD

Updates from the Ministry of Children and Family Development (MCFD) are being published on their Response to COVID-19 and Children & Youth with Special Needs pages.

On April 27th, the MCFD updated their website to announce a limited autism funding extension for children whose 6th or 19th birthday falls between March 15 and June 30, 2020, to allow 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 7,500 signatures have been added to a petition calling on MCFD to reverse its decision. The primary request is that MCFD allow families of children with autism to have more time to spend their treatment funding, given COVID-19 has shut down most therapy services.

MCFD issued a press release on April 8th announcing an Emergency Fund of $225/month for 3 months for children with special needs. Children/youth who are eligible for the Autism Funding Program and the At Home Program medical benefits are eligible for this fund if approved for MCFD CYSN services prior to March 30, 2020. Unfortunately, many parents are reporting their social worker has said they will not receive the funding. This is because the $900,000 Emergency Fund will only allow 4.4% of 30,000 eligible families to be helped for a three month period – 1,333 families to be specific. Clearly an insufficient response to the many families in crisis. And if only 4.4% of families can benefit, it is unfortunate that many more will be contacting their social workers only to be disappointed.

On April 30th, BC Parents of Complex Kids, Family Support Institute, Inclusion BC and BCEdAccess released survey to which 1055 parents and guardians of children with disabilities responded. Nearly 60% of families responding had not been able to access any of the MCFD emergency pandemic measures, and 57.8% indiciated they were uncertain if they were eligible for any pandemic supports. Visit the BCEDAccess website to review the full survey results.

The confusion around the Emergency Fund has brought home to the ACT team that MCFD’s information, now that it has begun to flow, is becoming difficult to navigate or analyze, with documents sometime arriving by email or on their website, and at times being replaced without clarification. ACT has decided 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. MCFD Minister Katrine Conroy and Education Minister Rob Fleming are due to meet this week. Observers are hoping that they have been properly briefed by those who are working directly with families in crisis. 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?

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

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.

Background

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.

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.


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.

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ACT’s Free Web Stream Series


Watch now – videos on Autism Videos @ ACT

Practical Tips for Helping Families Reduce Stress

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The Challenges of Advocacy During a Pandemic

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Coping with Behavior Challenges during COVID-19 – Setting Realistic Expectations for Families

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What Can I Do with My Child All Day? Strategies for Supporting Young Children

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Using Enforced Family Time to Support Learning at Home

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Autism, Anxiety and COVID-19

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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.

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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.

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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.

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Resources for Families with Younger Children

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.

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Coronavirus Specific Resources:
Ideas for Engaging Children:
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Resources for Youths & Adults with Autism

Learning about the COVID-19, preventing the spread, coping with isolation, managing routines and insights published by autistic adults.

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Resources for Families Waiting for Assessment

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.

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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 Manual for BC is a great place to start. For more information on the autism diagnostic process in B.C., see Chapter 1 – The Diagnostic Process in British Columbia.
  • AIS BC has also published helpful brochures by age group, including: Ages 0-5, Ages 6-12, and Ages 13-18.
  • 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:


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!


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.

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Stay Informed

The latest news from local and international public health agencies.

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Public Health Agency of Canada Coronavirus disease (COVID-19): Outbreak page.

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.

Visit the World Health Organization’s information for the public, including COVID-19 myth-busters.

BC Centre for Disease Control COVID-19 FAQ Guides:

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COVID-19 Resources in Additional Languages

French, Spanish and Chinese language resources currently available.

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Français

Ressources en santé mentale:

Ressources pour les familles ayant de jeunes enfants

Ressources spécifiques aux coronavirus:
Idées pour engager les enfants:

Ressources pour les jeunes et les adultes diagnostiqués avec l’autisme:


Español

Recursos de salud mental

Recursos para familias con niños pequeños

Recursos de información relacionados con el coronavirus:
Ideas para involucrar a los niños:

Recursos para jóvenes y adultos diagnosticados con Autismo:


简体中文

针对有幼儿的家庭

针对青少年和自闭症成人

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Best Practices for COVID-19

  • 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

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An Update on ACT’s Live Events

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ACT has suspended two events scheduled for April 2020, as it is unlikely that Simon Fraser University will be available. Our May 22, 2020 event is still open for registrations but will be available via web streaming only. We will keep all registrants updated as that date draws closer. In-person attendance will resume when the provincial government allows. For information on ACT’s web streaming program, visit ACT Live Web Streaming.

ACT is planning to offer a number of free web streamed events in the coming weeks – we will be sending out updates as the information becomes available. Don’t forget that Autism Videos @ ACT has 60 workshops and events, all free, with no password required!

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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.

In British Columbia:

BCEdAccess

Inclusion BC

Family Support Institute

Across Canada:

ARCH Disability Law Centre

Include-Me.ca

Is your Canadian organization advocating for a stronger response to those with disabilities? Let us know at info@actcommunity.ca