Creating Winning Conditions for the Child, School & Family

 

1% of school-aged children in Canada are diagnosed with autism .

Early Intervention before the age of 6 has been proven to minimize the lifelong impacts of autism (ASD) and intellectual disability (ID) on a person, as it tackles the challenges at a formative stage of life.

Quebec’s public and private sectors have mobilized to provide better access to Early Intervention services for children aged 0-6.

For up to a third of autistic or developmentally delayed children, Early Intervention is successful and allows them to go to school and live a normal life. They are freed from the need for lifelong therapies, support and social services from a rehabilitation center.

However, 62-94% of autistic and intellectually disabled children also have a psychiatric disorder and 60% have more than two mental health conditions .

Mental health disorders create behavioural problems, which prevent these children from deriving benefit from Early Intervention therapies. Challenging behaviours are the biggest barrier to learning. No models of intervention currently exist that allow professionals to ensure ALL children can benefit from Early Intervention approaches.

The long-term requirement to care for and treat these children into adulthood puts a heavy and costly burden on both Quebec’s social services system and the families that care for them. For a person with autism or an intellectual disability, the cost to our society over their lifespan is $3.2M .

However, a solution is in the works. An ongoing longitudinal study by UQAM is following the largest ever cohort of children with ID and ASD aged 2-7 years and their families. The study is developing models of intervention that reduce problematic behaviour and therefore increase the children’s ability to benefit from the Early Intervention therapy.

Due for completion in 2020, the UQAM study is a partnership with 13 Québec public agencies that provide specialized interventions for people with ASD and ID, the Québec Ministry of Health and Social Services, and a charitable foundation. The study’s ultimate goal is to transform assessment and intervention practices within the Province’s public services for pre-school aged children.

The study has already resulted in the creation of the first French-language clinical assessment tool for emotional and behavioural problems among preschool-aged children with ASD or ID, which is being made available to Québec agencies.

The Challenge

The UQAM study is producing great results for pre-school aged children, but what happens when the child goes to school and the intervention therapies stop? What if the child is not fully autonomous and independent at this point? What happens if their behavioural issues have decreased through Early Intervention, but not disappeared?

For many children, it spells disaster. From being fully supported through therapy and learning how to navigate the world through their disability, they are suddenly plunged into an alien environment with no guidance or tools given to help them cope and adapt. There is no integration of Early Intervention therapies and services in the public school system in Québec today.

The impact of this dramatic transition can be seen through the measure of family quality of life. Family quality of life drops when the child’s autism/ID is identified, improves during Early Intervention and then drops of dramatically during the first year of kindergarten, when therapies stop.

Stopping intervention therapies leads to longer term developmental problems in the child and adult, unfulfilled individual potential, and a bigger burden on the public system to provide social services for children who’ve ceased to receive the therapy they need once they go to school but whose needs don’t go away.

Cost to Educate a Child in the Public System, Based on their Ability/Disability

Public School Stage Normal Child Child with Autism/ID Child with Autism/ID & Behavioural Problems
Kindergarten (1 yr) $2,147 $3,977 $6,628
Elementary School (6 yrs) $11,292 $29,088 $48,480
High School (5 yrs) $9,095
High School (8 yrs)* $36,360 $60,600
Totals $22,534 $69,425 $115,708
Source: Règles budgétaires pour l’année scolaire 2017-2018
Note: *children with autism or intellectual disability tend to stay in high school until the age of 21 as they have nothing else to go on to.

Currently, there are no studies evaluating the trajectory of problem behaviors in children with ASD or ID from infancy to school. The intervention strategies and the support measures to be put in place are poorly documented.

The Solution

Building on a ten year partnership with the Chair in Intellectual Disability at UQAM, the Butters Foundation is working together with the UQAM research team to develop a second study that looks at the intervention needs of intellectually disabled or autistic children with behavioural issues going through elementary school, both at home and at school, to ensure their academic and social success.

Evidence clearly shows that a collective inability to properly and effectively serve disabled people, especially those with serious behavioral issues, can have a disastrous impact upon the social fabric of our evolving society, and more specifically on family life itself.

In parallel to the first study that looks at children aged 2-7, this new study will follow 250 children aged 6-12 who have problem behaviours at school, as they progress through elementary school. The study will look at the characteristics of these children and of their families.

From this data, the research team will be able to identify the factors associated with the problematic behaviors and improve our understanding of the measures to be put in place to support these children.

The Butters Foundation

The Butters Foundation was started in 1976 in order to promote the legacy of Mrs. Lily Butters who won the Order of Canada in 1972 for her work in helping families cope with an intellectually disabled child before the advent of public services. She took in children from all over Quebec and had a reputation for refusing no one. By the time she retired she was serving over 430 children & adults and had become, over time, the largest employer in Brome County, along the border with the United States. Her legacy of helping families in need is what we at the Butters Foundation have retained over the almost 45 years of our existence. From buying homes to relocate adults into the communities of the Eastern Townships, to financially supporting a range of programs for supporting parents in their quest to raise a disabled child in today’s world, to finally today focusing on promoting applied research projects that would significantly improve public rehabilitation services to children & young adults that are exhibiting behavioral issues serious enough to disrupt family life, and even jeopardize the relationship of their struggling parents.

The Research Project

The research goal is to develop new public services that will support the social and academic integration of children with ASD or ID and behavioural problems in the public school system and create long-term positive effects for those children and their families.

The study is broken into four key stages over a 5-year period.

 Stage 1 | Diagnosis: the research team will develop a new Developmental Behavioural Checklist (DBC) for elementary school aged children. The objective of the DBC is to diagnose the children’s conditions on a standardised scale.

 Stage 2 | Profiling: using the DBC, the team will measure the characteristics of children and families participating in the study. The objective is to create a profile of each child that details their conditions, the co-morbidity of the child’s conditions, the external factors to the child’s life and an understanding of how they impact on their condition.

 Stage 3 | Measurement: over the longitudinal period of the study, the team will measure how the services received by the children, combined with their life conditions and family environment, impact on their developmental issues. The objective of Stage 3 is to understand how each child evolves and determine what can be put in place in the public-school system to improve their situation.

 Stage 4 | Intervention: following the diagnosis, profiling and measurement of the progress of children with ASD and ID through elementary school, the research team will develop various intervention services ideas for children within the age cohort. The objective of this final stage is to prototype and pilot new public service intervention ideas working in partnership with the families, CRDI and school.

Building a Better Public Education System for All

Challenging behaviours are the biggest barriers to learning. Not only do they disrupt the child with the disability, they also impact negatively on all the children in the classroom.

The Butters Foundation seeks to raise $2.45M to develop new tools and services for the public-school system to better integrate and educate children with intellectual disabilities or autism, and severe behavioural problems.

The funds raised will be used to fund the Chair in Intellectual Disability at UQAM over a five-year period and the research project detailed previously.

The clinical experience and research infrastructure of the Chair, built over the past ten years provides the essential research foundation and springboard to the research project. Crucially, the Chair’s external network and standing will ensure that the results of the research are translated into practical interventions and transitioned into the public sector.

The future of the chair is our future as a society. Our society will be judged on how we treat our most disadvantaged members. Over-extended families facing the enormous challenge of raising intellectually disabled children will depend on our work.