Honourable senators, I would like to thank Senator Housakos and all of the committee members who studied this bill.

The autism framework proposed by Bill S-203 includes as one of its principles the provision of equal access to medical and financial supports. This bill would require the government to implement an autism framework including financial support for autistic persons and their families and support for caregivers of autistic persons. Poverty is a barrier to meaningful access to services, promoting injustices and inequalities that prevent too many people living with autism from thriving.

Testifying before the Social Affairs Committee, as Senator Wanda Thomas Bernard just mentioned via Senator Cordy, Vivian Ly of Autistics United Canada noted that 25% of autistic people in Canada live below the poverty line. In identifying a status quo of “state-sanctioned poverty and violence” against autistic people and others with disabilities, that creates a “school-to-institution pipeline and a school-to-prison pipeline” for too many economically marginalized youth whose families navigate barrier after barrier while trying to secure adequate care.

I want to dedicate the rest of my words today to Bev and her 4‑year‑old son Weston. Bev’s daily efforts to address systemic barriers starkly illustrate the observation of Autistics United Canada at committee; namely that siloed supports for those with autism and their supporters are wholly inadequate to redress the intersection of systemic ableism and economic marginalization.

Bev is a 39-year-old Métis woman born and raised in Saskatoon. She describes herself as a proud mother to seven beautiful children, aged 4 to 21, and kookum to a 1-year-old grandson.

This is what she had to say:

I am a survivor of child abuse, sexual abuse, [the] foster care system, juvenile incarceration, prostitution, domestic violence, drug addiction, I am an ex-gang member and have served time in a federal penitentiary. . . . I have survived intergenerational trauma. . . .

I was fortunate to have met a support system that believed in me, that wrapped me in services, held my hand and helped me face my insecurities.

I am currently employed at Métis Nation Saskatchewan as a Systems Support Navigator. I am also in my first year of studies at the First Nations University of Canada taking the Indigenous Social Work program. . . .

I am no stranger to advocacy, to demanding that my community be treated like humans. Fighting a system that is stacked against Indigenous, vulnerable, marginalized peoples and the voiceless.

. . . [W]hen I found myself fighting for answers, demanding treatments for my son, I did not know that I was going to be not only his mother but also his advocate and his voice. His quality of life depends on me. . . . Each path I went down, I was hitting barriers, meant for me to give up and surrender and accept that my son didn’t deserve proper treatment and therapies . . . because I come from poverty, we continue to receive mediocre care. I cannot accept this.

Weston was born on October 22, 2017, a preemie baby he thrived and excelled in his little milestones. At 35 weeks, Weston came home. . . . [A]t eight weeks old, he contracted a virus. I remember calling 911 at lunchtime because he had stopped breathing.

. . . It seemed as though almost every week or two we were in the emergency room with Weston having troubles breathing[;] each visit to the hospital we were given the same treatment, a combination of inhalers and steroids and sent home.

[When he was] 10 months . . . [a] specialist realized that Weston’s lungs were full of fluid. . . . Weston underwent surgery . . . [He] was on a feeding tube for four months and had a nebulizer and oxygen at home. Weston was drowning every time he drank or ate.

. . . I became more concerned when Weston was just a little over a year old and was not making any types of baby noises or trying to say any words. . . . [W]hen he played, he would line his toys up in a very particular order. When he ate, he did not like any of his food touching. . . . Weston was having meltdowns if a routine wasn’t followed or if we did something sporadically or spontaneous. By a year and a half, he was not making any eye contact with anybody, chose to play by himself, and did not like certain lights, noises, and places.

It took almost 2 years on a waiting list to be seen by the specialists at the Alvin Buckwald Center. By then, COVID was here. . . This meant that all appointments had to be done over virtual video calls.

In February 2021 Weston was diagnosed with Global Developmental Delay, Autism Spectrum Disorder (ASD) and he remains non-verbal.

Let me enumerate just a few of the barriers to adequate resources and care for Weston:

Being a single mom with four children at home, working full-time. . . and attending university full-time, I am stretched paycheque to paycheque. . . . I cannot afford the $125-$350 an hour to seek private therapists for Weston. The recommended therapy time is 2 hours a week x 52 weeks. And currently there are waitlists of 6-36 months. Weston is currently in need of a behaviour intervention specialist; this can cost upwards of $500 per visit.

I cannot access services for Weston through Autism Services because I need to complete a parenting intervention program. Currently they are only offering this program during daytime hours at three hours a day for 6 to 12 weeks. . . . I cannot budget to lose three hours a week of work. . . . I was told that I need to prioritize my son, that if Autism Services means that much to me, I will find a way to make it work. I felt like I was [failing] . . . my son by not being able to commit to that parenting program.

Weston is a “runner” meaning he will run in any open space. I currently rent a home on the corner of a very busy street. I applied to the Jordan’s Principle to have a fence installed around the front of my home for the safety of my son and was denied. I put an appeal in in July 2021 and I am still waiting for a response. . . . [Weston] is currently enrolled in Project Lifesaver, a program that put a GPS monitor on Weston so he can be tracked by the Saskatoon Police Service if he were to go missing.

In October . . . Weston really needed to see a dentist. But because he would not sit in a dental chair and have a check up completed, I was told the only way he was able to have his teeth checked and fixed was to have him sedated and have dental work done that way. The catch was that I had to pay $3000 upfront for them to book the appointment. . . . I was at work . . . in tears after I got off the phone with the dental office and had no idea how I was going to help my son. My boss . . . overheard the conversation and started a GoFundMe page [and raised $3500] to have my sons’ teeth fixed. . . . The total was $3990. I still owe $440 for this visit for Weston. I am told that because Weston will require sedation for all dental work, that each visit will cost $3000. This is outrageous.

Weston is diagnosed with aspiration, meaning that when he swallows, fluid enter his lungs . . . which causes aspiration pneumonia and resulted in dozens of admissions to the hospital. There are no supports in place to assist with purchasing special bottles, cups and dishes to assist with his aspiration.

Because Weston has a very hard time eating . . . I am currently purchasing protein powder, [many] . . . vitamins, . . . and probiotics to help him try to be healthy. He is also lactose intolerant. There are no services in place to help with the increase of money needed to purchase these items.

Weston is diagnosed with auditory processing disorder. At first, we were told he was hearing impaired [and] . . . we had to purchase $3000 hearing aids. . . . [A]fter multiple appointments and no improvements I requested a follow up hearing test. I was told that this would take 18 to 24 months, so I paid for a private hearing test. . . . [W]e found out that . . . he can hear[;] he just cannot process the words or sounds we are making. Saskatchewan does not have any therapies that specialize in this disability for young [children].

Weston has been to 4 early learning centres in Saskatoon and was asked to leave all 4 centres due to insufficient staff to provide adequate care.

In 2021 I organized a fundraiser for Weston to allow us to purchase an IPAD and app program to help Weston with communication through pictures. This fundraiser raised $1200. I rely on YouTube and self-taught techniques to teach Weston.

Weston is currently attending a special-needs preschool . . . but with no access to a special needs kindergarten in the fall. I am being told that he will have to attend regular kindergarten classes with the hope —

— the hope, honourable colleagues —

— that we get connected with an educational assistant.

I have also been told that if Weston is not fully toilet trained, he will not be allowed to attend school at all.

Honourable senators, some of you will remember Bev. Bev was the one who coordinated the Faceless Doll Project that was donated to all of you. Bev is a smart and tenacious woman. Her challenges navigating disparate and inadequate systems are grossly unfair and highlight the urgent need for comprehensive economic, social and health supports that are accessible to all.

During committee study of Bill S-203, Autistics United Canada called for “cross-disability supports and services, and universal, equitable access to financial security, basic needs, housing, employment, education and health care,” naming in particular:

. . . basic income, universal pharmacare, housing-first policies and full compliance with the UN Convention on the Rights of Persons with Disabilities.

The government has committed to implementing the Canada disability benefit, a form of guaranteed livable basic income for persons with disabilities. It has committed to implementing the Calls for Justice of the National Inquiry into Missing and Murdered Indigenous Women and Girls, including Call 4.5 for a national guaranteed livable basic income. These are the sorts of financial supports that Bill S-203’s proposed framework must incorporate if it is to make a difference for Weston and too many others.

Bev’s tenacity is remarkable. She proudly describes her son:

Weston is the sweetest, most observant, and kindest little boy. I have learned from Weston the true meaning of patience, understanding and I have a whole new perspective on how I view the world by watching through my son’s eyes.

Weston . . . is beautiful inside and out.

And I want you all to know that.

I honestly feel that my son does not get to have the opportunity to access services, programs, and therapies because I am low-income. He, unfortunately, has a mom that cannot give him a privileged life with unlimited resources and money to access [what he needs, let alone] the best of the best. Being an Indigenous woman brings so many barriers, we have faced racism, discrimination, and a lack of empathy during this journey. But I refuse to give up.

Colleagues, this bill is just one step, but without equitable access to all necessary supports, we risk continuing to leave behind those who need it most. Let’s not fail Bev and Weston and too many others.

Meegwetch. Thank you.