Author Archives: ACT

RCY Report: ‘Left Out: Children and youth with special needs in the pandemic’

“The COVID-19 pandemic has revealed the fragility of our support systems for children and youth, exacerbating long-standing problems and layering on new ones. For the tens of thousands of B.C. families who rely on supports and services for children and youth with special needs, the pandemic illuminated a crisis decades in the making.”

This is the opening statement in the latest report by the Representative of Children and Youth [RCY], ‘Left Out: Children and youth with special needs in the pandemic, a searing analysis of a shameful reality created by successive BC Governments.

The grim details of the report by the RCY, who is the watchdog on BC’s Ministry for Children and Family Development, reporting directly to the legislature, will ring true for families caring for children with special needs. But will the Premier or his MLAs pay attention? They have ignored wave after wave of criticism for months – most recently the shocking results of Simon Fraser University’s survey, released three weeks ago, which revealed similar findings of families under such extreme strain that nearly 10% have considered putting their children in foster care.

The RCY’s report also echoes SFU’s findings that families have had great difficulty finding out what services were available to them from the Children and Youth with Special Needs [CYSN] division of MCFD. Indeed, according to the RCY report, in the survey that the RCY did of over 500 families last month: “45 per cent of families had no contact with their CYSN worker during the six months [April to September] when emergency measures were in place, and 63 per cent report no contact since measures ended.”  

Time to support all neuro-diverse children

At the very minimum, in response to the RCY’s report, steps must be taken to provide therapeutic services for children with Fetal Alcohol Syndrome, Attention Deficit Disorder, Intellectual Disabilities and other neurodevelopmental differences, as well as all the children with rare medical conditions who are forced to beg for charity in order to provide therapy or equipment for their children, because of decades of neglect of the At Home Program.

Child Development Centres across the province are chronically underfunded and unable to cope with the volume of requests, leaving the children of poorer families to go without the early intervention therapies they require. Just as the pandemic revealed the appalling state of many homes for the elderly, it is exposing the neglect of the poorest and most vulnerable at the other end of the age spectrum.

Minister Mitzi Dean – will she clean house?

A  possible ray of light is that BC’s new Minister for Children and Families, Mitzi Dean, has hands-on experience in child protection. But, given MCFD’s chronic neglect of children with special needs, can she both reform child protection and services for children with special needs? Not to mention the need to reform services for Children and Youth with Mental Health needs, which have also been neglected within MCFD.

Is MCFD a failed experiment?

The perspective of many advocates is that MCFD, created in 1996, is a failed experiment. Minister Dean’s predecessor, Katrine Conroy, was fond of saying “Government moves slowly”, to explain MCFD’s failings, stressing what a large ministry it is.  Certainly, families have not seen any change since the NDP government took power in 2017, after over a decade of neglect by successive Liberal governments. The focus of MCFD under the NDP has been largely on childcare, but even the childcare needs of children with disabilities have been ignored as waiting lists for Supported Child Care Development have ballooned.

The refusal of MCFD to engage in meaningful collaboration with advocates during the pandemic has led to a growing consensus that families caring for children with special needs can’t wait any longer – it is time to remove the responsibility for their children from MCFD.  Minister Mitzi Dean is promising more collaboration, but much will depend on whether there is a shake-up among the senior leadership of MCFD in short order. The Tyee carried an important article by Katie Hyslop on MCFD’s new minister earlier this week and pointed out that MCFD may not change unless a more pervasive “new broom” is applied: “While ministers have changed, senior managers — like deputy minister Allison Bond, assistant deputy minister Cory Heavener and deputy director of child welfare Alex Scheiber — have remained in the ministry in recent years. All have worked for BC Liberal and NDP governments.”

The Tyee quotes Grant Charles, UBC Associate Professor of Social Worker, who explains that the senior managers have more sway over operations than the minister: “Technically it’s the minister, but one of the most powerful things about the civil service is their ability not to do something if they choose. So it doesn’t matter how good the minister is if there’s resistance at the civil service.”

When will the Special Needs Framework be revealed and will it be worth waiting for?

The response of MCFD’s leadership to criticism throughout the pandemic has been that the Special Needs Framework, which it promised would be funded and implemented eight months ago, will resolve all the long-standing issues that the Representative of Children and Youth’s successive reports have exposed. But the framework’s details are still a closely kept secret even if the systemic issues have been recognized for years. Long time observers of MCFD fear that the framework will be heavy on platitudes and short on action.  

Meanwhile, the RCY’s report provides ample evidence that MCFD appears to lack the institutional capacity currently to listen to the families it supports, treat them respectfully and develop responsive policies. This echoes ACT’s experience: in two meetings with the previous Minister and current Deputy Minister, we found they had little understanding of how their own ministry functions. Deputy Minister Allison Bond was surprised that families who could not manage on minimal respite funds from the Children and Youth with Special Needs division of MCFD, had no recourse but to entrust their children to the Child Protection side of MCFD.

Despite ACT urging the Minister and Deputy Minister to communicate directly with families about the details of the emergency provisions, through the autism funding portal, it has never been used for this purpose. If families with autistic children had been provided clear instructions via the portal, this could have freed up social workers to concentrate on other families. Based on the behaviours of MCFD, few observers believe that there has been genuine commitment within its leadership to communication with families. This was certainly not the fault of individual social workers, who have a thankless task implementing directives made via press releases.

Follow the money in the February budget

It remains to be seen just what MCFD is considering within the new framework. As far as ACT is aware, no autism organizations were consulted in its development. So we are unsure whether it will even touch on the concerns that are specific to children with autism – 19,000 children as of June 2020, according to MCFD’s own numbers. We won’t know until the new budget is announced in February whether funding specific to implementing a new Special Needs Framework will be committed by the Minister of Finance. If not, families can expect no practical help from this new Minister for Children and Family Development.

Our thanks to the Representative

Families of children with special needs across BC owe a great debt of gratitude to Dr. Jennifer Charlesworth, the Representative for Children and Youth for bringing together organizations advocating for children across a range of special needs, including ACT, to work with her on this report.  Perhaps it is time for advocacy organizations to bring together families across special needs/neurodiversity, a union of families to stand together to demand the therapies and equipment their children need to thrive?

What is your response to the Rep’s report?

Please email ACT in confidence at [email protected] and we will feature your opinions on our website. Or respond via Facebook.


Update from MCFD’s new Minister for Children and Family Development

MCFD’s new Minister for Children and Family Development, Mitzi Dean, has responded to the highly critical report issued December 3, 2021 by the Representative for Children and Youth. It is refreshing to see that Minister Dean wants to “hear directly from those who are affected. That’s why I have asked ministry staff to set up an advisory council to help ensure those voices are heard. I have also asked staff to expedite the implementation of the CYSN service framework and work to improve the system for struggling families throughout the province.”

In the lead up to the announcement of the new budget in February 2020, now would be a good time for families, and those that support them, to contact their newly elected MLAs to share their experiences of the “flexibility” demonstrated by MCFD throughout the pandemic. 

 

BCEdAccess Exclusion Tracker Oct/Nov 2020 Update

BCEdAccess has new statistics about how many parents/guardians are paying for additional supports outside of school, based on information from their Exclusion Tracker.

View the results here.

Some highlights:

We asked if parents/guardians are paying for additional supports outside of school. The answer was a resounding yes. Within the last year, BC parents paid for many services not provided in school or by Health or MCFD, including tutoring, occupational therapy, psychoeducational assessments, and more.:

Specialist Sessions

  • 28.1% – in home sessions (eg. Board Certified Behavior Analyst (BCBA), interventionists
  • 21.9% – Speech Language Pathology (SLP) sessions
  • 17.2% – Occupational Therapy (OT) sessions
  • 4.7% – Physical Therapy (PT) sessions

Assessments

  • 14% – private diagnosis
  • 12.5% – Psychoeducational assessment
  • 14% – SLP assessment
  • 12.5% – OT assessment
  • 4.7% – PT assessment

Other

  • 32.8% – counseling
  • 28.1% – tutoring

The Impact of COVID-19 on Mental Health, Quality of Life, and Service and Support Needs in Families of Children with ASD

Last Spring, as the situation for families with autistic children deteriorated, ACT collaborated with researchers at Simon Fraser University to survey the impact of COVID-19 on families in BC. The results of the survey are shocking. They show that the majority of families are extremely distressed. Nearly 40% of the 238 families who responded are concerned about the safety of other family members, largely because of the level of anxiety triggering aggression in their child with autism. Over 60% of families found MCFD supports unhelpful. Families were even more critical of Ministry of Education efforts. The situation has been so difficult, that nearly 10% of those surveyed have considered putting their children in care.

Psychology researcher Grace Iarocci, Director of SFU’s Autism and Development Disorders Lab, is urging the provincial government to better support the needs of children with special needs or risk devastating consequences.

“We knew that families of children with ASD were under tremendous stress, but as researchers we are shocked by the severity of the pressures they were experiencing even before the pandemic and how much worse it has become,” says Iarocci. “Our hope is that the provincial government will pay attention to this data and listen to families and act to provide the support families need.”

Vanessa Fong, the SFU researcher on the project presented her preliminary research results in a poster presentation. Download the poster here (pdf).

The findings of the study – funded by Mitacs, Kids Brain Health Network and ACT – were presented November 12, 2020 at a Kids Brain Health Network conference.

 

ASD and Mask Challenges

Earlier this week, ACT received an email from a BC mother of a six-year-old with autism who had been turned away from a grocery store. She explained:

“Long story short, we were not permitted to enter a TNT store because my son could not wear a mask or a shield. I did wear a mask and told them about our “mask challenge” and the diagnosis, but they said they didn’t know what autism is and didn’t care to know.

In our everyday life we all meet the problem of autistic awareness (or better said unawareness), but this one was so brutal. I feel so isolated, it feels like there is no place for my son in this world, and I am scared for his future. I think that for adult autistics life is even harder, I feel I need to do something to change the situation.”

ACT’s Response

I am very sorry to hear about your experience, I know how painful this type of rejection of our children is from my own experiences during my son’s childhood. You are absolutely right to try to find a way of dealing with this to benefit all children with invisible disabilities. One way to handle this would be to get a letter from your family doctor explaining that your son has autism and that he cannot wear a mask. This can be a generic letter that you can use in any situation. Then send the doctor’s letter to TNT’s head office with a letter from you, explaining what happened and request that they inform the store in question that Dr. Bonnie Henry allows exceptions to be made for medical reasons. You could even copy the letter to Dr. Henry! Keep it calm and factual.

Ask the management of TNT to please inform you when you can return to the store and who to speak to when you go to ensure that you and your child are treated respectfully.

Also, here is the link to ACT’s ‘This Person Has ASD’ card. Print some out and have them ready if anyone challenges you. Ask them to contact ACT and we will explain.

I hope that these suggestions are helpful. I would like to hear what happens.  

Warmest regards to you and your family.

Deborah Pugh
Executive Director
ACT – Autism Community Training

Registration open for 7 Fall Events | BC Election Disability Focus | Access $90,000 – October is RDSP Month | Does ACT owe you a refund?

ACT’s Free Fall-Spring Events Season – available live and online across Canada & around the world

Registration is open for ACT’s free Fall/Spring series of web streamed presentations by speakers who will inspire and inform. This initiative is in response to the concerns of families and individuals across the world, affected by autism and other special needs, who have been isolated by the pandemic. ACT is responding to their requests for practical resources that are accessible from their homes. These free events are open to anyone who is interested, internationally, but the focus is on supporting caregivers. View All Upcoming Events

Co-sponsored by

ACT’s Fall-Spring Season of Free Events has been made possible by the Government of Canada’s Emergency Support Fund in collaboration with the Vancouver Foundation; the Provincial Outreach Program for Autism and Related Disorders [POPARD], as well as our generous individual donors.

Please consider donating to ACT – as little as $10 a month is a great help. Support ACT’s work.

BC Election Disability Focus

As BC’s snap election campaign accelerates, many affected by disability are feeling disengaged, after months of being ignored by the current government during the pandemic, and years of neglect by successive governments. But there is time to ask the candidates where they stand. To help, ACT has put together a special Elections 2020 page. Here you will find links to the excellent resources put together by other BC organizations focused on disability rights in the run-up to October 24, Election Day 2020. ACT is also calling on professionals and para-professionals to speak out for change.

View BC Election Resources

Survey Report: Pandemic Canadian Autism Needs Assessment

Over 1,000 responses to a national survey, carried out by McMaster University this summer, point to the severe impact of the pandemic on autistic individuals and those who support them across Canada. Particularly concerning is the impact on mental health.

BCEdAccess Exclusion Tracker

The hard working volunteers at BCEdAccess have published the first survey result for this school year’s ‘Exclusion Tracker’. Early indicators are overwhelming: schools are failing to ensure that ministry directives are being followed, more parents are reporting that their children with disabilities are being excluded from BC schools.

“[The survey] asked if the school-based teams had made the families aware of the BC Ministry of Education’s direction which stated:
‘Students who require more support in school must have full-time, in-class instruction available without any delays.’
Approximately 85% of our respondents stated NO, their school teams had not provided them this information.”

BCEdAccess’ Exclusion Tracker is an ongoing project. Add your experiences to the tracker here.

Registered Disability Savings Plan Awareness Month

October is Registered Disability Savings Plan (RDSP) awareness month! If you are living with a disability and are under 50 years of age, you could be eligible for up to $90,000 in government grants and bonds through a Registered Disability Savings Plan (RDSP). If you need free help signing up for the RDSP, take advantage of a new program, including specialized supports for Aboriginal applicants. For more information, visit the RDSP website.

Difficulties Receiving Refunds for ACT Events from MCFD? Please let ACT know!

Last week ACT was contacted by a parent who was refused reimbursement by the Autism Funding Branch of the Ministry of Children and Family Development for the registration fees she had paid to attend an ACT event because she had not requested pre-authorization. We were shocked to hear this as for 15 years, and hundreds of events, families have not been required to have pre-authorization from the Autism Funding Branch for ACT workshops and we were unaware that the policy has been reinterpreted.

We have tried to resolve this with the Autism Funding Branch but their response has been to quote policy: ‘This is supported in policy which can be found on page 19 of “A Parent’s Handbook: Your Guide to Autism Funding Programs”, which states “Services are not eligible for reimbursement; only authorized travel, training and equipment purchases may be reimbursed.”’ This means that instead of continuing with the blanket authorization of all ACT events, which all comply with MCFD’s standards, and feature internationally respected presenters. With this change, each year many hundreds of parents will have to individually request pre-authorization for ACT events.

ACT deeply regrets this inconvenience to families, as we know it will put further stress on them and will waste the time of civil servants. Fortunately, most of ACT’s training this year is free. However, ACT does not want any parent to be out of pocket because we inadvertently misled them. So, if you have been refused reimbursement for an ACT event, ACT will refund your fee. If the Autism Funding Branch pays on your behalf, there is no change. Please just send us the email from the Autism Funding Branch with the refusal and we will process your refunds by the end of this month.

If you have any questions about this reinterpretation of policy, the person to contact is:

Arpita Monahan
Community Liaison / Quality Assurance Officer
Ministry of Children and Family Development
[email protected]