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 firstname.lastname@example.org.
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?