ACT News and Resources

Financial Aid for People with Disabilities Delayed in Parliamentary Dispute

On June 5th, the Government of Canada announced it would be providing a special one-time payment of $600 to individuals who, as of June 1, 2020, are certificate holders of the Disability Tax Credit.  The payment was to be provided without an application or attestation and was to be non-taxable. View details of this announcement.

Unfortunately, the House of Commons is locked in a disagreement about passing other components of Bill C-17, which includes this measure. Include-Me.ca has set up a web page with a simple process to write to your MP and  share your opinion of the delay in passing this legislation. 

To keep up with the latest announcements on this issue, follow ACT’s Facebook page.

Federal government announces one-time, tax-free payment of up to $600 for those who have a valid Disability Tax Credit certificate

“OTTAWA — Canadians with disabilities will be sent a one-time tax-free payment of up to $600, Prime Minister Justin Trudeau announced on Friday, in an effort to help offset the financial pressures of the COVID-19 pandemic.

This new financial aid will go to all who are eligible for the Disability Tax Credit, as of June 1.

Canadians who have a valid certificate for the Disability Tax Credit will receive $600. Canadians with a valid Disability Tax Credit certificate and who are eligible for the Old Age Security (OAS) pension will receive $300. Canadians who are eligible for both of these programs and are also eligible for the Guaranteed Income Supplement (GIS) will be receiving $100.”

View the full article below.

Free Early Intervention Resources for Home | Submit Summer Activity Opportunities

Submit your Listing to ACT’s Community Events Page

With social distancing measures still in effect, the range of options for the summer are limited. To help families find what is available, ACT is gathering information on virtual summer camps and fun activities for school-age kids to be posted on a new Summer 2020 BC Community Events page. If you have a camp, program or event to share with families who have children with a range of special needs, please submit your resource. Please note that we are looking for more specialized resources that will address the needs of neuro-diverse children.

Make a Submission Here


Early Intervention Resources for the Home Environment

blankThere are thousands of children across Canada whose autism assessments have been delayed for several months at this point. As the wait time for a publicly-funded assessment in BC was up to 60 weeks even before the pandemic, forcing families to seek a private diagnosis at a cost in the range of $3,000 – $4,000, many families are highly stressed. To help families find ways of engaging with their young children who have either just been diagnosed, or where autism is suspected, ACT has gathered resources on our COVID-19 Page. These suggestions, illustrated by great videos, are focused on play based interventions. Even if a child does not have autism, these suggestions are helpful to encourage communication and social development and have been developed by world leaders in this field.

View ACT’s COVID-19 Waiting for Assessment Resources


blankLooking for some fresh ideas on how to engage your young child who has either been recently diagnosed or where you have concerns about social communications?

Perhaps you work in public health, IDP or in a CDC which has been forced to close? We would welcome professionals forwarding this resource to families who are awaiting a diagnosis or early intervention services.

Don’t miss the free recording of Dr. Pat Mirenda and Dr. Paola Colozzo of UBC: “What Can I Do with My Child All Day? Strategies for Supporting Young Children” It provides a guilt-free framework for thinking about how to encourage engagement in the home – setting realistic expectations for overstretched parents.

We urge parents to watch it – it’s only an hour – and hope that early intervention providers will share the link with their families and help them identify the ideas/resources that are a good fit for their child. The PDF Handout contains example activities, resources, and websites.

Watch this Presentation


Resources to Encourage Social Communication

In addition to the free web stream above, the links to the programs below provide families tips on what to do to encourage social communication while they are waiting for a diagnosis. Ideally there is an early educator, a speech pathologist, or an Infant Development Program worker who knows the child too, and can provide advice remotely. We are not suggesting that parents become therapists, but these programs provide more sharply tuned approaches to parenting.

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 geared toward play and fun!

blank 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.

blankThe 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).


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.

Positive Behavior Support: What Parents Need to Know!

Brenda Fossett, PhD, BCBA-D

Toilet Training for Children with Autism and other Developmental Disabilities

Pat Mirenda, PhD, BCBA-D

Solving Sleep Problems in Children with ASD

Beth Ann Malow, MD, MS

Visual Support Strategies for Individuals with ASD

Brenda Fossett, PhD, BCBA-D

View all PBS videos


COVID-19 Resources on Autism and Special Needsblank

ACT is continuing to update information on advocacy efforts and resources on our COVID-19 page. We welcome your suggestions for new resources at info@actcommunity.ca.

View ACT’s COVID-19 Page

Early Years Letter to BC’s Representative for Children and Youth

Concern is growing among those supporting families with children with special needs across B.C. at the lack of an effective response from MCFD to the continuing crisis. The Early Years Conference Committee has written a passionate appeal to Dr. Jennifer Charlesworth, Representative for Children and Youth: “We hope that you and your office will commit to a collaborative investigation resulting in a report including recommendations and help us bring needed reforms to our province. We look forward to an update. The time is right for change.”

Read the letter below.

May 7, 2020

Dr. Jennifer Charlesworth

British Columbia’s Representative for Children and Youth Sent via email: jennifer.charlesworth@rcybc.ca

Dear Dr. Charlesworth,

RE: Early Years Conference 2020

Listen Together, Learn Together, Act Together

We are writing to thank you for your excellent Keynote Address at our 2020 Early Years Conference in February. Your presentation emphasized the importance of the early years and the life‐long benefits to children, their families/communities and to society in providing the right services and supports at the right time, early in life to ensure the best outcomes. We appreciate your commitment to children and youth and the work your office is doing to support them and their families, in particular those most at risk. We also appreciate your invitation to work with you to bring about needed reforms for children with disabilities and their families.

In our discussions following the presentation we were heartened by your interest in your office conducting a formal report of services for young children with disability in BC similar to other reports conducted with other vulnerable populations. You noted it has been decades since such a review of services and supports for young children and their families in BC had been done and it was long overdue. As a collective we fully endorse a review that considers the needs all families of young children with disability, including indigenous, non indigenous, rural and remote.

Since that conference, our province has undergone massive changes due to the COVID‐19 pandemic. It has revealed how torn the fabric of service is to our most vulnerable populations. Services were limited, inflexible and inadequate before the crisis. We see the impact of inadequate care reflected in deaths in long‐term care homes. It is also reflected in the tremendous burdens of unmet needs experienced by children with disabilities and their families. Many families are faced with increased stress, mental health challenges, isolation, family violence and food insecurity. We believe that, going into the pandemic, had our systems of care been solid and the coordination and supports been in place to meet the diverse needs of children and families, the burdens of today would be more easily managed and infused with hope and knowledge that there would be an end at some point.

ACT BC has done significant advocacy for families of children with Autism and The Family Support Institute, Inclusion BC, BCEdAccess and BC Parents of Complex Kids have been working hard to bring direct concerns from parents to MCFD. Very little to date has been accomplished to address real and growing concerns now highlighted by the crisis of COVID‐19.

The Province can do better. We know from families and service providers what is needed. We know that low incidence populations benefit from provincial rather than regional oversight, when standards of service and care are developed, monitored, trauma‐informed and evaluated; when staff training is valued and supported; when families are fully involved in all decision making processes there can be success.

There is no excuse for needs to be met in one region and completely unmet in another; when one family can access needed support and others cannot; when one staff person can access training and another works with little or no qualification for what should be a highly skilled job. There is huge and unnecessary inequity throughout BC. This can create devastating and life‐long consequences for our youngest and most vulnerable citizens. Future changes should include, with family input, determining which services families deem are essential for our youngest citizens and their families.

We hope that you and your office will commit to a collaborative investigation resulting in a report including recommendations and help us bring needed reforms to our province. We look forward to an update. The time is right for change.

Sincerely,

Early Years Committee

Diana Elliott, Co‐Chair, Provincial Advisor, Aboriginal Infant Development Programs, Victoria, BC

Stacey Walsh, Co‐Chair, Social Worker, Sunny Hill Health Centre for Children, Vancouver, BC

Yvette Bolduc, Advisor, Training Coordinator, Aboriginal Head Start Association of British Columbia, Duncan, BC

Tanya Brown, Team Leader Early Years, Mother Bear Child Development, Shéwaynewas “Growing Together” Family Program, Ayas Men Men Child and Family Services, Squamish Nation, North Vancouver, BC

Dana Brynelsen, Community Representative, former Provincial Advisor, Infant Development Program of BC, Retired, Halfmoon Bay, BC

Kjerstin Dunk, Infant Development Consultant, South Cariboo Infant Development Program; Cedar Crest Society, 100 Mile House, BC

Jason Gordon, Provincial Advocate, BC Association of Child Development and Intervention, Kelowna, BC Kristina Hiemstra, Director, Interprofessional Continuing Education, UBC, Vancouver, BC

Amy Mullis, Strategic Communications Lead, HELP, School of Population and Public Health, UBC, Vancouver, BC Judie Sahadeo, Infant Development Consultant, Langley, BC

Mary Stewart, Sessional Instructor, Faculty of Education, UBC, Vancouver, BC; Instructor, Early Learning and Child Care Program, NorQuest College, Edmonton, AB

Michele Tardif, Supervisor, Sources Infant Development Program, Surrey, BC

Mandy Young, Provincial Community Engagement Coordinator, Family Support Institute of BC; President, BC

Prader‐Willi Syndrome Association, New Westminster, BC

Angela Wrede, Syilx Early Years Lead, Okanagan Nation Alliance, Westbank, BC

Why is the response of the BC Government to children with special needs so weak?

blankThe lack of action on providing an emergency response to even the most marginalized families of children with special needs reflects long standing attitudes within the Ministry of Children and Family Development (MCFD) and the Ministry of Education (MOE) to children with special needs – essentially they are not a priority. However, in the midst of this international pandemic, when all levels of government are taking radical steps to protect citizens, it is shocking to see, virtually unchanged, this chronic resistance to the need to mobilize to protect vulnerable children. Six weeks into the withdrawal of all of the essential services that have kept families functioning, MCFD and MOE have yet to announce steps to provide wrap-around service to the province’s most vulnerable, despite the promises made in a joint letter from Minister Katrine Conroy (MCFD) and Minister Rob Fleming (MOE) on April 14th.

Broadly, the BC Government has done an excellent job of meeting the multiple challenges of COVID-19. The Ministry of Health, Adrian Dix and Dr. Bonnie Henry have provided science-informed leadership. The needs of the homeless, those living in care homes, those caring for seniors in the own homes , women at risk from domestic violence and adults with special needs have received much needed attention and funding, highlighting the chronic funding shortages each sector has long experienced.

Why is the situation so different for families whose children have been stripped of all the services their children rely on? Deborah Pugh, ACT’s Executive Director, has spent 25 years engaged with the special needs community in BC, following many years working as a journalist internationally. This is her analysis of what most families see as MCFD’s and MOE’s grudging response to the needs of all neuro-diverse children.

The reasons for the underwhelming response from MCFD and MOE are complex and deeply embedded within both ministries. They are each very decentralized, with few provincial standards that are rigorously applied to services for children with special needs. This has left both MCFD and MOE struggling to create a coherent provincial response to COVID-19, especially as the upper echelons of both ministries lack an understanding of family realities and do not appear to be benefiting from straight-talking advisors. In recent years both ministries have focused on the attitude that “all children are special”, watering down their obligation to provide highly trained support to neuro-diverse children.

MCFD is particularly limited by years of ensuring its staff and contractors do not document their concerns in their reporting. Ignoring reality is a pervasive problem within MCFD, which may explain why MCFD’s leadership is keeping such a low profile in this current crisis. It has not helped that the NDP government has downgraded support for special needs in its focus on childcare since coming to power, compounding years of neglect by the Liberal government. It is notable that the $225 provided to families for respite has not increased in over 20 years.

Families of Children with Autism Outraged by MCFD’s lack of response

MCFD is especially ham-strung by the Autism Funding Branch [AFB] which has failed to deliver efficient service during its 17 years in existence. The petition asking MCFD to allow the rolling over of autism funding, if families cannot spend it on therapy for their children because of COVID-19, is now approaching 7,500 signatories. As MCFD appears determined to claw back part of the $80 million autism funding program, it will likely be the only Ministry that can point to savings during COVID-19. Given the flexibility that the provincial government has had to demonstrate in the midst of COVID-19 to the needs of other sectors, it is not surprising that some families are considering launching a class action law suit on the grounds of the evident discrimination against children with autism.

MCFD’s COVID-19 ‘Emergency’ response ignores 95% of families

The disconnect within MCFD is reflected in the reactive nature of its response to COVID-19 generally. In the face of fierce criticism of its lack of any response to special needs families, three weeks into the crisis, MCFD’s April 8th press release launched its Emergency Fund for COVID-19. The release failed to acknowledge that fewer than 5% of eligible families will receive $225 a month; $900,000 does not go far when stretched over 30,000 special needs children.

It is impossible to know just how many families are struggling to the point that their children are at risk, but it is certainly far more than 5%. Pity the chronically overworked CYSN workers who have to decide which desperate families on their caseload will benefit. What is most worrying about MCFD’s response is that $225 cannot address the needs of isolated, impoverished families supporting very challenging children who are now dependent on their parents 24/7, without access to school, childcare workers, respite or interventionists. More worrying still are the families who are too stressed in the face of their children’s needs to make multiple calls to their CYSN workers.

A reluctant response from BC’s Ministry of Education

MCFD’s lack of vigorous engagement has been mirrored at the Ministry of Education. Minister Rob Fleming has left it to school districts to decide how to support students with special needs who cannot learn online at home. This week, a month after spring break ended, a few school districts are taking their first, very tentative, steps to accommodate a few students at school, watched carefully by both the BC Teachers Federation and CUPE. Vancouver School District is restricting their efforts to one secondary school with only a handful of students. Surrey SD is also moving very slowly to meet the needs of students who cannot learn remotely. [There is no comprehensive source of provincial data on support to high needs students attending in person, as yet. However, early reports point to a much faster response from private and faith-based schools that from the pubic school system.]

Six weeks after schools closed this is too little, far too late. In BC, we have been told that all teachers, EA’s and administrators have continued to be employed. Surely more can be done for students with high levels of special needs, drawing on Ministry of Health directives to ensure safety, using creativity and compassion.

53,000 unused childcare spots but little response to desperate families of children with special needs

There is no doubt that both MCFD and MOE can mobilize, if necessary. Witness the rapid creation of 59,000 emergency childcare spaces for the children of essential workers in response to COVID-19 – far more than have been needed. According to a CBC report, MCFD said that as of April 16, more than 2,500 child-care centres have a total of nearly 60,000 spaces available but only 3,000 spots have been taken. Many Educational Assistants (EA) for students with special needs were assigned to provide childcare for essential workers. While essential workers must be given priority, the lack of planning or consideration for students with special needs is clear. This is especially hard. since for many children with limited communication abilities, their EA is not easily replaced, as reported by BCEdAccess in their April 8th snapshot.

An opinion piece in Saturday’s Vancouver Sun by two noted clinicians on the response of BC’s education system, sums up the growing sense of abandonment: “many parents of children with special needs are wondering whether the cavalry will ever arrive for them.”

Keeping Children Safe – and out of Foster Care

This excerpt from a letter written by a parent to MCFD, and shared with ACT, explains the crisis that hundreds, if not thousands, of parents are experiencing as they try to keep their children safe:

“My son, who is eight and has ASD, has been thrown into emotional turmoil by the removal of all of the routine and supports (school, his EA, OT, BIs) he previously needed to help him through his day.  He is not able to meaningfully engage through video teaching.  His rigid and literal thinking is exacerbating the problem as he refuses to do any school with me as home is not “school” and I am not his “teacher.”  He has been having multiple meltdowns, yelling, screaming, crying, and hurting his older sister.  He recently told me crying that “There is no future.  I have no hope.  I want to die.”  He is NOT okay.  And by extension neither are we, his family.”

ACT has had confirmed by MCFD sources that CYSN workers continue to tell advocates and families that they have very little to offer at-risk families, advising that they should contact child protection if they are concerned about a child’s safety, that CYSN is not a crisis service. Indeed, this has been the position of CYSN for decades. COVID-19 has not triggered a reset, even temporarily. While families are desperate for help, most, especially aboriginal families, are very reluctant to identify themselves as unable to keep their children safe. They fear their children will be apprehended by child protection and placed into foster care. This means that these families are effectively on their own – a very dangerous situation. Let us not forget that five years ago, a desperate mother of a child with extreme support needs, living in Prince Rupert, took her son’s life, and her own.

There is much discussion, as we all consider the fault lines which COVID-19 has revealed in our society, about how we need deep seated reforms. Surely providing parents of children with a range of special needs, including Fetal Alcohol Syndrome, ADHD, Down Syndrome, autism and a number of rarer conditions, of a reasonable support system, is worthy of serious consideration.

In the meantime, Behavior Analyst Courtney Phillips has been in touch with ACT and is offering to help organize families who are in crisis and are being told that their only option is Child Protection, in order to bring more attention to this terrible situation. “Professionals, such as myself, are seeing firsthand the toll that COVID-19 is having on our most vulnerable students and families. Many, especially single-parents, are experiencing a new level of caregiver burn-out and we hear often that families are afraid to ask MCFD for help for fear of having their children taken from their care by Child Protection.”  Courtney can be contacted at courtney.pphillips@icloud.com.

A Different Story at the Ministry of Social Development

In stark contrast to MOE and MCFD, the Ministry of Social Development and Poverty Reduction (MSDPR) has given a $300 a month boost to adults living on the Persons with Disability Benefit. It has also set aside $35.6 million to subsidize the increased costs of organizations supporting 9,500 adults with a range of special needs living in home shares and group homes. This averages over $1,250 per month per adult receiving services from Community Living BC. This step recognizes that staff cannot be expected to make the sacrifices that families will. A case in point is the recent story from Ontario about a mother of twins who risked her life by delaying going to hospital for COVID-19 treatment, because of the lack of childcare for her non-verbal son.

Unfortunately for children with special needs, they must rely on their hard-pressed, exhausted parents to speak for them. Surely government can do better now. Or must we wait for the Representative of Children and Youth to investigate the aftermath of the BC government’s ongoing systemic failures to support children with special needs during this COVID-19 crisis, which may well continue for many months to come?

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