“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.

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.

The 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 [email protected].

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?

In the three weeks since the COVID-19 pandemic has accelerated, ACT has been copied on letters from parents from across the province, requesting action from the Ministry of Children and Family Development. [We have gathered these on our COVID-19 Advocacy section.] On Friday, April 3^rd, in a teleconference with MCFD, Deputy Minister Allison Bond told families that Minister Katrine Conroy had instructed MCFD to work “fast” and that the Minister herself would be responding to families. Four days later we have had no word of what that response will entail – nor any word of an appearance from Minister Conroy. MCFD’s website has not been updated since March 30^th.

The letter below, from a parent living in a small rural community, sent to Minister Conroy, asks many of the questions to which families are demanding a response. A petition organized by parents has gained over 3100 signatures since Friday.

Dear Katrine,

I would normally address you by your official title, but today I am writing you as a person not a politician. I understand that you are in touch with ‘the people’ and want to reach out to you on this basis. From what I have heard you truly care about your cabinet portfolio.

On Friday, a twinge of guilt washed over me as I once again plopped my children in front of my new babysitter… aka the TV. I did this so that I could listen to the hugely anticipated MCFD Youth with Special Needs Conference call. I eagerly called in early, had my note paper ready… waited with anticipation to hear how MCFD was going to sweep in and offer us some much-needed support. Having spoken to the staff at AFU several times in the past weeks and hearing their compassion and support, I knew that this must be good!

I listened and appreciated the kind words from the speakers, however I slowly became frustrated at the lack of anything concrete. Statements like: “well we might relax this, and we might do this, BUT be sure to check with your Social Worker.” I left the call disheartened and disappointed. Nothing in writing, some words spoken to the select few of us who happened to tune in to the call.

The way in which the call was promoted was also quite puzzling to me, it was distributed through an advocacy group? Autism Community Training. Why did the Ministry not invite us to this? Surely a note could have been sent out through the Autism portal or through an email from our Social Worker? Why was nothing put in writing? It was all up to interpretation which can be challenging at the best of times, let alone in a pandemic.

Why does this all matter to me you might ask? Well, this is where is gets personal: my son is 8 (turning 9 on Saturday) and is autistic with severe hyperactive ADHD and a learning disability. We count ourselves as the blessed ones because he has an amazing support system. We receive $6,000 in funding for him annually to provide therapies, equipment and supports. Another large amount of money is given to his school to support him. He receives two guided sensory breaks a day, has a six-page detailed IEP (individualized education plan) and has many physical supports to help him to focus and participate in the class. He has an Educational Assistant (about 2 hours a day) to scribe and support him. These accommodations and amazing supports help him thrive to the best of his ability in class. We have seen him grow from strength to strength.

As for our $6,000, I take this funding ‘gift’ from the government very seriously and astutely spend at least 10 hours a month working on ways to get the very best therapies and supports for my son. We have waited three years for an Occupational Therapist, in January 2020 our dreams came true and we discovered an who had just moved to our [rural] area. We worked hard on a workable schedule, shuffling our precious funding… all so that she could help [our son] with a long list of challenges. I shuffled the remainder of my funds to spend it all on this amazing resource. One of the biggest challenges being physical outbursts which are quite disruptive to our family and his sibling. (We pray that it will never require an ER visit)

Then, the pandemic hit. Now, we are left with virtually no supports (in comparison) from the school. No EA, no guided sensory breaks, no real help as to how we make this work. Our OT is unable to provide any therapy and has suggested the possibility of a Facetime call every now and then to do a check in/ therapy. (This would however require that I keep him focused and engaged for the session) The thought of this does not bring any comfort, in fact it gives me anxiety. How on earth am I going to possibly force my son to sit and talk to someone for 60 minutes. This is even more pressure on me as a parent.

During all this, I am trying to hold down a job and work from home. Not only am I trying to work, I like many people are being reassigned to do our work in new ways… steep learning curves! Like most of us will do anything to keep the pay cheques coming.

I want to acknowledge that I know we are not the only ones facing challenges. My heart aches as I look at my Community and see people across all sectors reeling from this pandemic. I do however think that families with children with special needs have extra pressures.

My questions are:

• Why did MCFD not put anything in writing about changes or supports. Why was this a secluded conference call for those of us who happened to see the Social Media post? Many other Ministries have stood up on the podium and boldly declared their supports for various other sectors of society. Why not us?
• Why is the Autism Funding Branch not allowing us to carry over funding? Consider families in rural areas who have no way of accessing services. It’s not like we are asking to use the money for a vacation. All we are asking is for flexibility to carry it over, you can even set a time limit on it. Statements like ‘we want families to do virtual therapies’ are creating even more pressure on parents. It feels so out of touch with reality.
• Respite funds: although I am so appreciative of this kind gesture – dare I question if this amount shouldn’t be increased and spending allow more flexibility? So many families are facing challenging times, and this could really help to help families in need. Allow us to buy equipment, apps, Lego, educational toys, frozen meals etc. Things that could take the pressure off and really support us.
• Provide clear guidelines on potentially hiring laid-off EA’s to support us. Can we use AFU or respite funding to hire them to help us in our homes? Is this allowed, is this part of social distancing? Could we have it that they are cleared by a Physician and then help us?

Lastly, I would like to say that I fully support the letter from ACT.

I know you must be inundated with emails and complaints and I am sorry to add to your workload. I just feel it is important for me to voice these concerns as I am seeing so many families reeling and know they will not have the capacity to write to voice their concerns.

It is my sincere hope that you will be granted much wisdom in this challenging time and appreciate you being willing to represent the people in this very tumultuous time in our history.

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.

View COVID-19 Resources