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 3rd, 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 30th.
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.
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.