05/28/2026
There is a crisis happening in the disability community, making this a life or death situation for some. And so while I don’t want my business to be political, I need to make things personal for this one moment because disability advocates are pleading with everyone to share their stories out of the hope enough people will care.
And tomorrow is yet another day of action.
Some of you may have already heard of her or even met her - mom’s kid, Halina, is a severely disabled adult. She was showing signs that something was different with her from before she was even born. As soon as she was born she cried a lot and would always pull at her ears. She didn’t sleep. She couldn’t raise her head when babies were supposed to. She couldn’t sit when babies were supposed to. She was late speaking, crawling, and walking. When she did start speaking, only mom could understand what she was saying. They had gone to dozens of toddler playgroups and classes and had to drop out of all of them because Halina refused to participate.
Mom took her for a community assessment day when she was two and the nurses overlooked her because she made eye contact and was very social. Even the pediatrician wasn’t concerned until Halina was 3 and still struggling to get words out. So Halina went for her first formal assessment when she was 3.5. She tried to run away the whole time and did not participate in any assessments. You would think that would be enough for doctors to decide something wasn’t right, but they just left her at “Autism Query”. So Halina went to playschool with support from PUF. She had a teacher’s aide, speech and language pathologist, occupational therapist, and behavioural consultant. This was back in the day when everyone used ABA. Since then Adult Autistics have spoken out about how abusive the therapy was for them.
Mom struggled a lot with the educational team. They had IPP meetings where she would try to advocate for Halina. Try to get them to listen to what works for her. But they did not. Halina progressively got worse in her two years of playschool. She would scream non stop for hours when she got home. She would try to run away from school. When mom would come to pick her up she would either be in the bootroom or the bathroom. She had started to read before she started school, but after the two years she regressed and refused to read, do math, or answer any questions that were school-type questions. She would duck down in her carseat and cover her ears if they drove by the school.
So mom took her out of school.
She had the binder where they logged everything and she took it to yet another assessment. Again, Halina did not allow them to test her, but the book was enough for them to diagnose her with Autism. Which didn’t matter much by that point because mom was done with the whole system. The Autism clinic wanted to put Halina in a group where she could be observed through a one way mirror. Mom politely raised her middle finger and got out of there with her kid.
They took a year off and then started homeschooling through Edmonton Public Schools. Mom had to do “unschooling” to try to warm Halina up to school again. After three years she started reading again. After 5 she started doing math. So Halina ended up doing two grades a year to catch up with her peers. Mom did parent directed learning so she could customize curriculum to Halina’s needs. They only met with a teacher twice a year.
When Halina was 12 she watched her first anime and started speaking Japanese on her own. Coincidentally, the Edmonton Japanese Community Association piloted a teen language class that year. It took some convincing for them to accept her. They were unsure because they had never had an autistic person take a class - mom knew that was perfect because they didn’t have any preconceptions that would discourage Halina from participating. She still goes to classes and events at EJCA and can read, write, and speak Japanese fluently.
When Halina turned 17 mom had to take her for another assessment so she could start the process of applying for AISH. It turned out that not only was Halina Autistic, but also had an intellectual disability, meaning her IQ was below 70.
But, you may be wondering, why would mom be signing her kid up for AISH when she hates the whole system?
Mom had to give up everything to be Halina’s caregiver, and that meant she was low income. She hadn’t worked for two decades. She’d been divorced for a decade. It was a sacrifice that saved the government hundreds of thousands of dollars and freed up one more space for another person. It also gave mom a Panic and Anxiety disorder as well as an Autoimmune disorder from the stress. And one day Mom will die and Halina will be without her. Mom needed to start preparing for the inevitable and putting Halina back into the system was necessary.
Halina qualified for PDD, which is a program for the most severely disabled folk. But mom never accessed any of their services. Halina gets her AISH so she has medical insurance, can pay rent, and contribute the rest to an RDSP because AISH actually ends when a person turns 65 and then they are transferred to a federal program where they get considerably less financial assistance.
Halina has only been on AISH for two years and it has already been clawed back because of the federal disability benefit.
And now the Alberta Government has brought in ADAP - a work for welfare program that requires everyone who has been involuntarily placed into it to get a job. Initially only people who were terminally ill were going to be kept on AISH, but then the government had changed it to keep those who qualify for PDD as well.
Yet Halina got placed into ADAP even though she is severely handicapped and qualifies for PDD. Rumor has it people on ADAP have to do training classes for 6 to 8 weeks for six and a half hours a day. Halina is a person who could not do playschool. Her mental status has never changed. She has severe anxiety. She gets very overwhelmed. She is selectively verbal. She doesn’t understand a lot of things. She can not advocate for herself. She can not self care. It is very hard to get her out of the house even to do things she enjoys doing. She gets confused.
She can’t even work at her mom’s cafe.
But the government has decided she can work. And that giving her $200 less is the motivation she needs to do it. And since she lives at home, they are also going to give her 12% less than that.
So mom is back to fighting with both middle fingers in the air.
And back to being political, mom does not believe the solution lies in any party - no one cares enough about the disabled to truly care about them and care for them, so she doesn’t care for any politician.
What she knows is people do care.
There is a lot of misinformation out there. There is a belief that people on social assistance are grifting the system.
I can tell you from personal experience, no one in their right mind would subject themselves to constant medical evaluations, auditing, and appeal processes for the paltry amount of assistance AISH provides. Even if you perceive a person as able, the fact that they are in a system so unstable, abusive, and uncertain… it’s not fun. No one wants that. And even if half of all people on AISH were abusing the system, by forcing everyone to work it is punishing the truly disabled like Halina.
She doesn’t deserve this. No one deserves this.
It is terrifying to be a parent of a disabled person. Not because of the disability, but because increasingly we live in a world devoid of empathy and kindness. I will die one day and my child will be left to the mercy of society. What will that mean?
I am terrified.
And right now there are people who have been placed in ADAP who don’t understand what is happening to them, who don’t have family members to help them, and who will be punished for not participating in the work for welfare program.
A society needs to be measured by how we treat our most vulnerable and right now we are failing.
No political party is going to save us, but people can.
You can share my post.
You can come for a coffee and we can talk.
You can write your MLA to add your voice to the thousands asking this program be paused until they have a better plan.
You can realize that homeless person is probably a person who has a disability and no one to help them.
We need a system to catch those who are falling if we want to have safe neighbourhoods, safe transit, and less crime.
It just makes sense.
Punishing vulnerable people is never the solution. Poverty will not force a person to stop being disabled.
They need love, not abuse.
We’ll go back to making cookies now.
