ACT News and Resources

Requesting reassurances from MCFD for desperate families of children with special needs – A request to Premier Horgan

Sent via email March 31, 2020

Dear Premier Horgan,

I am writing to bring to your attention an accelerating crisis among families supporting children with special needs. You may not be aware that these families have not received any additional support from the B.C.’s Ministry of Children and Family Development (MCFD) in the midst of the COVID-19 crisis – indeed there is no information on MCFD’s website that acknowledges that these families can expect any help.

As Executive Director of ACT – Autism Community Training, I have been receiving anguished emails from families across British Columbia and enquires from concerned professionals. ACT is a not-for-profit based in Vancouver that provides information and training to the families of over 18,000 children diagnosed with autism in B.C., as well as to thousands of families who have children with other diverse special needs. For the past few weeks, we have been working frantically to promote our free resources to those supporting children and adults with special needs including a web cast on Anxiety, Autism and COVID-19, scheduled for April 2nd. As a group, our families have high levels of anxiety. We are asking that you take action to have MCFD provide them with enhanced support and to communicate this on the MCFD website so we can reassure them that concrete steps are in process.

April 2, 2020 is World Autism Day, it is also the five year anniversary of the death of Robert Robinson, killed by his mother, who then committed suicide, when she was told by the Prince Rupert office of MCFD that there was no help available for her severely autistic son. There are undoubtedly hundreds of B.C. families who are now extremely desperate. The staff of MCFD, particularly in the area of Children and Youth with Special Needs (CYSN), require leadership from their Minister to empower them to support these families. If any ministry is blocking flexible support for these families, this must be rectified to avoid future tragedies.

MCFD’s own data on the number of special needs children who normally receive MCFD services and/or funding, and who are currently without support, indicates the significance of this omission.

These vulnerable families have lost access to school, respite workers, childcare workers and behavior interventionists and are struggling to support their high needs children at home. Often these are single parent families living on the poverty line. Some have more than one child with special needs. Many have written ACT, copied us on their letters to government or posted messages on our Facebook page describing their concerns. These can be viewed on our ‘Advocating for BC Families’ section of our Coronavirus resources page – look for the button ‘Community Feedback’.

I am particularly concerned that without action on the part of MCFD that more children will be taken into care by Child Protection when they could be supported through CYSN services. MCFD has an unfortunate record, stretching over many years, of neglecting resources for children with special needs, especially for children who do not have autism. CYSN has no resources to respond to COVID-19 without special funding. It clear that without additional measures, Aboriginal children are at particular risk of being apprehended.

MCFD has been alerted to the need for a response. On March 18, 2020, ACT sent the Minister of Children and Family Development, Katrine Conroy, recommendations on how to respond to the fears of families by increasing direct funding and loosening the normal restrictions. In the two weeks since we sent recommendations, families have been given no assurances as to MCFD’s preparations to respond to the needs of their vulnerable children. It is noteworthy that the Minister of Social Development Shawn Simpson has engaged with families of adult children. The Minister of Education has also been proactive. But there is a total information vacuum on the special needs section of the Ministry of Children and Families’ website. In contrast, the Alberta government has responded responsibly

At a time when many levels of your government have done a remarkable job demonstrating transparency and compassion, it is extremely disappointing to see the lack of engagement of MCFD with the families of vulnerable children it is mandated to support. Thousands of families cannot be expected to spend hours waiting to get through by telephone to their local MCFD office or the Autism Funding Branch – which in any event have been unable to provide specific information. These families are desperate to hear specifics from Minister Conroy as to when their needs will be recognized and addressed. This support needs to be detailed on MCFD’s website.

Families need practical support at this time when all families are feeling significant stress – none more than those who are struggling to cope with their very high needs children.

Please contact me at dpugh@actcommunity.ca if I can provide any clarification about these concerns.

Thank you for all the positive efforts your government is taking – they are very appreciated by all British Columbians.

Sincerely,

Deborah Pugh
Executive Director

ACT – Autism Community Training – Building Informed Communities
204-2735 East Hastings Street, Vancouver, BC V5K 1Z8
phone: 604-205-5467 | toll-free: 1-866-939-5188 | fax: 604-205-5345 www.actcommunity.ca

Recommendations for MCFD and MSD to support individuals with disabilities and their families during the COVID-19 emergency

In light of the COVID-19 Pandemic and the shutting down of public programs and services which are vital to adults and children with a range of special needs, ACT, in consultation with parents and professionals, has drawn up the following list of recommendations to the Ministry of Children and Family Development and the Ministry of Social Development. We note that the MCFD website indicates that “We are also looking at all our options to continue supporting parents and providers.”

While ACT – Autism Community Training’s links are primarily with the autism community, our reach is much wider as we offer free information services across special needs. However, the majority of children receiving funding in B.C. have a diagnosis of autism. It is our hope that the following recommendations will be actively considered. Their implementation would do much to assure families and adults with neuro-diverse conditions that the provincial government recognizes how this crisis is affecting them and is prepared to act quickly and efficiently.

As our community support system has shut down over the past few days, families and individuals who are dependent on daycares, group homes, therapists, care workers and respite providers are struggling to maintain safety and a sense of normality. There is a sense of real desperation among families and individuals, many of whom are on low incomes, especially those who are supporting multiple high needs children across the age-range.

The measures offered below are aimed at identifying immediate steps that the provincial government can take to lessen the financial pressures on families supporting children and adults with a range of needs, their service providers, as well as adults receiving Person with Disabilities allowances and respite funding. This includes families receiving Autism Funding/At Home Program/ Respite Funding across special needs.

These are practical recommendations that are relatively easy for the provincial government to implement. They focus on increasing direct funding, allowing families flexibility in how the money is spent, and relaxing time limits for expenditure for those already receiving funding so that new funding agreements are not necessary and funding for therapy is protected, even if it cannot be expended within the contracted period. They will supplement the steps that the federal government has taken which do not compensate for the provincial services that are being cut.

Implementation of these recommendations will allow social workers to focus on the needs of families who have been identified as significantly at-risk even prior to this crisis. Children and Youth with Special Needs Social Workers should have the authority and the funding to work with service providers to provide additional funding/services when available to address emergencies. All efforts should be made not to take children into care when the root issue is the chronic lack of funds and support services available for families of children with special needs.

Supporting Families of Children with Special Needs

Specific to Respite Funding:

Schools are closed, possibly until September, and many parents of children with a variety of special needs will not be able to find respite providers or any form of childcare. Many families rely on a single income or rely on income support; others will be forced to go on unemployment insurance which will mean a reduction of income. In light of these circumstances, recommendations include:

  • Allow families to use their respite money ($233 a month) to look after their children themselves until the public health emergency is ended.
  • Double the amount of respite funding that each family receives so that they have the means to look after their high-needs children.
  • Expedite respite funding to all children with special needs who are on the current waiting list, including all children receiving autism funding.
  • Extend by six months, after the public health emergency is over, the deadline for families to spend their Autism Funding/ Respite Funding/ At Home Funding which normally has to be spent by a specific deadline. This recognizes that it may be months before families can again fully access service providers who, once this emergency is over, will be grappling with a spike in demand.

Specific to Autism Funding received by over 16,000 children in B.C.:

  • Allow parents to carry over funding from their current funding year to the next so that their children will not miss the opportunity to access their funding.
  • Relax authorization requirements so that families can pay for play/therapy materials that their children will require while they remain at home without a professional’s approval beyond the current 20% limit.
  • Allow the purchase of iPads and other therapy materials by families who receive autism funding so that their autism professionals/teachers can support/monitor children remotely when appropriate without approvals by professionals. [Expenditures that are currently not allowed, will remain off limits. i.e. non evidence-based interventions such as hyperbaric chambers and chiropractic ‘therapy’.] Communicate this clearly. Use the Autism Information Service of BC to support a seven day a week hotline which can clarify parental questions on these issues, confirming information by email whenever possible.

Supporting Adults with Special Needs:

Many families will be caring for their high-needs adult children at home as day programs are closing or group homes have difficulty maintaining staff. Others have supported their children through individualized funding but have lost all their workers. As a result, many parents will not be able to work or are already retired. Allowing parents to use the money that they would normally spend on workers, so that one parent can devote themselves to their adult child’s needs, would minimize disruption for families and financial exposure.

Many independent adults depend on Persons with Disabilities funding [$1,183 monthly], supplemented by part time jobs. They will find it very difficult – many will lose their part time jobs.

  • Doubling the Persons with Disabilities benefit until the health emergency is over will ensure that the most vulnerable people are better supported.
  • Allow parents to use this money to subsidize the cost of staying home with their adult child when workers are not available.
  • Provide additional reporting time (3-6 months depending on how long schools and programs are shut) for those parents administering individualized funding.

Service Providers

Many service providers including Speech Language Pathologists, Occupational Therapists, Behavior Consultants and Behavior Interventionists often wait many weeks for payment from the At Home Program and the Autism Funding Program. In order to ensure that they can weather this storm financially, it is recommended that the government:

  • Ensure that new invoices submitted by service providers are paid promptly.
  • Expedite the current back log of payments to service providers so that Service Providers, many of whom are in sole practice, do not go bankrupt during this health emergency.

Expediting Information Sharing

ACT is committed to helping MCFD and MSD by sharing your communications with the thousands of families and agencies we are linked to via our Facebook page and through our email service – ACT’s New Round-Up. We will send out your notifications so that families are aware of the latest information. This is important because government, including Autism Information Services BC, does not have an efficient way of mass communication with families, especially those not connected with agencies and dependent on individualized funding. Other special needs organizations are very likely to be willing to support communications so families and individuals with disabilities know that help will be forthcoming.

We also recommend that government set up a 7 day a week hotline manned by social workers, and CLBC facilitators to answer family questions around the challenges they are facing and for families to seek support. Mental health counsellors with training in special needs to advise parents will also be desperately needed and are in chronically short supply.

Establish an Advisory Council on COVID-19

Given the seriousness of the situation, government may want to consider setting up a cross disability Advisory Council of representative, active, organizations and individuals to provide ongoing information to government reflecting community concerns.

I look forward to an early response to this letter so that I may share it with those who access ACT’s information services. It is our intention to publish this letter shortly to provide assurances to the special needs community that there are efforts to advocate on their behalf.

Sincerely,

blank

Deborah Pugh
Executive Director
ACT – Autism Community Training


COVID-19: Practical Advice, ACT’s Advocacy, and Specialized Resources

ACT is gathering information to support families during the COVID-19 crisis, including resources specific to those who are neuro-diverse and useful general resources. Our COVID-19 Resources page will be updated as new resources come in.


COVID-19  – Advice for the Autism Community 

blankDr 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.

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.


COVID-19: Practical Advice, ACT’s Advocacy, and Specialized Resources

ACT is gathering information to support families during the COVID-19 crisis, including resources specific to those who are neuro-diverse and useful general resources. Our COVID-19 Resources page will be updated as new resources come in.


COVID-19 Advisory

ACT’s Live Events – April events postponed; In-person attendance suspended

ACT has suspended two events scheduled for April 2020, as it is unlikely that Simon Fraser University will be available. We are providing full refunds to registrants. Our May 22, 2020 event, Advocating within BC’s Ministry of Children and Family Development – A Workshop for Parents, 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.

We urge everyone to follow the best practices listed below as compliance will dramatically lessen the effect of COVID-19 on our citizens – especially those who are the most vulnerable.

Visit COVID-19 – Resources for the Autism Community for information to support families during the COVID-19 crisis, including resources specific to those who are neuro-diverse and useful general resources

3 Spring Events | Submit Your Events, Resources, and Research | Autism in the News

Upcoming Events – Spring 2020

blank

Positive Behavior Support – A Practical Introduction for Parents & Caregivers

Friday, April 3rd, 2020

Vancouver, BC & Webstreaming!
View details & registration

blankAn Introduction to Autism and Anxiety – from Research to the Classroom

Friday, April 24th, 2020

Vancouver, BC & Webstreaming!
View details & registration

blankAdvocating within BC’s Ministry of Children and Family Development – A Workshop for Parents

Friday, May 22nd, 2020

Vancouver, BC & Webstreaming!
View details & registration


Save the Date! – Events in the coming year

Details & registration coming soon

blank

Thursday & Friday, August 20 & 21, 2020

Two Days of Social Thinking:
A Focus on Emotions

Surrey, BC & Webstreaming
Presented by Michelle Garcia Winner, MA, CCC-SLP


blank

Thursday & Friday, October 22 & 23, 2020

Educational Forum – Future Of Special Education In B.C.

Vancouver, BC & Webstreaming


blank

Thursday & Friday, November 5 & 6, 2020

Supporting Early So cial and Communication Development through Parent Coaching

Vancouver, BC & Webstreaming


Friday, November 27, 2020

blank

Parents are Teachers Too! PBS Scenarios in the Home and Community

Vancouver, BC & Webstreaming

Brenda Fossett, PhD, BCBA-D


blankThursday & Friday, February 4 & 5, 2021

Toilet Training For Everyone – Revised And Expanded

Vancouver, BC & Webstreaming

Presented by Pat Mirenda, PhD, BCBA-D and Katie Rinald, BCBA


Does your organization have an event, resource listing, or research project to list on ACT’s website?

ACT supports the autism community with special sections on our website for contributions from organizations, researchers, support groups, service providers, and educational training & employment opportunities. Submit to any of these sections:

Share Your April Autism Awareness Month Activities on our Community Events listing

ACT’s Special Needs Community Events listing shares event information from B.C. organizations. Are you planning anything for April to mark Autism Awareness Month? You are welcomed to submit your organization’s events.

Visit Special Needs Community Events to see what is happening around the province,

Participate in research

ACT encourages research that builds evidence-informed approaches to supporting individuals with autism and other conditions. We devote a page on ACT’s website to informing autistic adults and parents of children with ASD about university-affiliated projects which may be of interest.

Visit the Participate in Autism Research page to see all current research projects and project contact information. Submit your research project using our online form to submit your university-affiliated research projects related to the field of autism and special needs. It may take up to one week to post.

Submit a Community Resource to the BC Community Resources Database

ACT is continually adding to our community resources from throughout B.C. You can submit your recommendations for quality resources in your community for inclusion in the BC Community Resources Database. We also appreciate updates or corrections of existing community records.

Categories for submission include


Autism in the News

ACT carefully sources insightful stories, ranging from research and government policy, to the world of entertainment, culture, and lifestyle.

Join ACT’s Facebook page for all the latest updates.

Woman takes up law to fight for son with autism – BBC News

Canadians with lifelong disabilities can lose disability tax credit – Global News

Teachers encouraged by special-needs funding changes – Prince George Citizen

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder – CBC Books

Girl Scout troop for children with special needs makes scouting ‘meaningful’ – Today

Malena Ernman on daughter Greta Thunberg: ‘She was slowly disappearing into some kind of darkness’ – The Guardian

Autistic teen faced relentless bullying since he came out at age 12. He died by suicide. – LGBTQ Nation

Melatonin may ease autistic children’s sleep troubles – Spectrum News

I’m Autistic, But I Didn’t Know It Until After Marriage And Kids – Yahoo

ACT's Facebook News Feed

Like our Facebook page for the latest news

5 days ago

Parents of children with developmental disabilities experience higher levels of stress than parents of typically developing children. During the current pandemic, these feelings of stress have been further heightened for the many parents who are getting few breaks as they care for their children. In this webinar, which will be a structured discussion between Dr. Fawcett and Dr. Anthony Bailey, Susan will provide some practical tips and strategies to help parents reduce their stress, including a discussion of the importance of self-care, cognitive reframing strategies, and a mindfulness practice.

This webinar is relevant to parents with children of all ages who have developmental disabilities of varying types (e.g., autism, Down syndrome).

Presented by:

Susan Fawcett, PhD, RSLP
Director of Therapy, Behaviour & Family Support at the Down Syndrome Resource Foundation

Anthony Bailey, M.D., Chair of Child and Adolescent Psychiatry, University of British Columbia

View details at www.actcommunity.ca/practical-tips-for-helping-families-reduce-stress
... See MoreSee Less

Comment on Facebook

I really enjoyed that! Easy to listen to :) Thanks!

Load more