As a mother with children who have verbal-normal-range IQ autism spectrum disorder (often referred to as high-functioning autism spectrum disorder; HFASD), I have learned to choose my battles. There have been many times I have simply removed my children from extra-curricular activities, summer camps, or competitive sports due to the lack of accommodation or sensitivity provided for my childrens' differences. I have learned that not all programs offer inclusive environments and even those deemed to have inclusion policies do not always uphold the values of inclusion. I have learned that some things are worth standing up for, the things that are just too critical to ignore.  

Parents of children with disabilities, often from their child's earliest ages, are taking the 'long view'; aware of the need to engineer their child's path to ensure better adult outcomes. For instance, when my children received the diagnosis of ASD as toddlers, I started planning for their adult futures. Like all parents, I want to raise my children to be self-sufficient, independent, contributing community members. But, following their diagnoses of ASD, I faced deep-seated questions exploring what they would need to achieve these outcomes while knowing the path would not be without challenges.  

For instance, Statistics Canada (2017) report individuals with disabilities are employed at lower rates, 59% versus 80%, for individuals without disabilities. The Canadian statistics on employment vary by severity of disability, with more severe disability associated with higher rates of unemployment or employment that is part-time (Statistics Canada, 2017). While Statistics Canada does not look exclusively at ASD but captures all developmental disabilities in one category, the literature suggests that youth and adults with ASD have the lowest employment rates as compared to other disability groups (see: Chen et al., 2015; Levy & Perry, 2011; Nye-Lengerman, 2017; Roux et al., 2013; Roux, Rast, Anderson, & Shattuck, 2017; and Tobin, Drager, & Richardson, 2014). Shattuck (as cited in Nicholas et al., 2015) reports employment rates of young adults with ASD as low as 11% by four years after high school graduation. Unemployment rates, in part, explain Magiati et al.'s (2015) finding of poor adult outcomes of independence and social integration, with 50% or more remaining dependent on parents or carers in their adult years.

These statistics trouble me. To achieve the goal of raising children to be independent, self-sufficient, contributing community members requires employment and the path to becoming employable starts with education. Education is one of the most critical social determinants of health. It plays a direct role in higher educational opportunities, employment, socioeconomic status, and access to resources to support physical and mental health. It is also one of the most amenable social determinants of health; we can intervene, improve current policies and practices to ensure that all children receive a good education.

Education is supposed to provide the skills needed to prepare students for their future. It is supposed to be more than just 12 years in a classroom. Essential skills such as literacy, numeracy, and life skills to fully participate in the world are listed in the UN's Convention on the Rights of the Child: The Aims of Education (2001). However, for some children in the system, these ideals are not achieved. As a result of policy and practices, they will spend 12 years (if they do not drop out first) in a classroom but will leave without the education or the tools.

How does this happen? The New Brunswick Education system currently has a policy on Inclusive Education, which was established to uphold human rights to ensure accessibility and equality of education. Under this policy, children are grouped according to the same 'age' in a shared learning environment/educational setting. The policy was written with great intent; to protect those with disabilities or differences from being marginalized in segregated classrooms. It represents Canadian values, and on paper, it is beautiful. However, this same policy in its misapplication can lead to many children being 'socially promoted', advancing grade by grade without having the foundational skills to have academic success in subsequent school years. The prioritization of keeping children with their matched-chronological-age mates can have detrimental consequences. For example, when all children, regardless of ability or circumstances, are advanced through the educational system without meeting the curriculum standards, they are placed on modified programs; once modified, they fall further and further behind academically. Consequently, many children leave high school without opportunities to advance their education in post-secondary institutions and without academic proficiency for the workforce to gain meaningful employment. Where "employment is a central component of community living and often a necessary component for affordable housing, accessing healthcare, utilizing transportation, and maintaining and developing relationships" (Nye-Lengerman, 2017,p.39), leaving school without the tools or 'education' has a serious lifelong impact.

While some children may benefit from 'social promotion,' advancing through their school years and staying with peers of the same age on modified programs, it is not good practice for all. For instance, many children enter the educational system without 'ready-to-learn' skills due to lags in their development (ex: many children with HFASD). They are, if you will, younger than their chronological age in essential areas such as motor, language, and social skills. Thus, they are not starting at the same start-line with the same advantages afforded to children 'ready to learn'. Simply advancing them and throwing resources at them, like educational assistants and services, will not see the child develop/mature any faster. Furthermore, in other parts of Canada, modified tracks are reserved exclusively for children where there is clear evidence of intellectual impairment; developmental delays are not clear evidence of intellectual impairment.

In my opinion, our story highlights a misapplication of the Inclusive Education policy. My youngest child, Nikki, has HFASD and has had, as a result, delays in his development (motor, language, social skills). He started kindergarten in 2019 and was a struggling student due to being much younger developmentally than his classmates. A plan to retain him in grade K was felt to be in his best interest, but he was promoted to grade 1 due to a Covid-related directive. He left his kindergarten classroom when Covid-19 landed in our province in March 2020 and didn't return to school until the end of January 2021. During his time home, he had only a few hours of in-home tutoring, from late October-January 2021, with numerous disruptions based on Public Health Covid rules changing, his father's hospitalizations, civic holidays, and the Christmas break. During his brief 'tutoring' he worked on pre-school and early kindergarten material.

While New Brunswick's elementary schools were open full-time with in-classroom instruction in September of 2020, my little boy couldn't attend; he was home with his brothers living in isolation to protect his 45-year-old-father, who was dying of cancer. Subsequently, 10.5 months passed before he reentered school and was placed in a newly formed k/1 split classroom, entering his former kindergarten classroom with his former teacher. By that time, he had missed 8.5 months of curriculum, services, and in-school support. In February, his father died at home. In April, I learned, just 6-weeks after losing my husband, that my little boy would be moved to grade 2 this fall, subsequently missing the opportunity to learn the grade 1 curriculum. After hearing that my child would be promoted regardless of his delays, missed time, trauma, and grief, I began the appeal process. An Appeal Hearing is scheduled in June to give me yet another opportunity to plead my case for my son to be given an opportunity to do the grade 1 curriculum. 

Although stated in The Convention on the Rights of Persons with Disabilities: Article 7, Children with Disabilities: "In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration." I am left to question, under these circumstances, how the best interest of my child is being held as a primary consideration? Furthermore, why is it that the education system decides my child's best interest when as a parent, I have the most vested interest in his life outcomes? And why do officials at the district level, who have never met my son, hold power to decide his fate?

Unfortunately, our story is not unique. The themes that it highlights are an unfortunate reality felt by so many parents of children in the public education system, children pushed through the system, and parents having no decision-making power to act in their child's best interest.

Thank you in advance for continuing to share this petition.