An exceptional approach for persons having an intellectual disability and challenging behaviors
By Donald Bidd and Glenda Castro
We live in Dorval and are parents of a 33-year-old son, Justin, who has a significant intellectual disability and vulnerability to serious and challenging behaviors. He is a gifted young man, but caring for him over the years needed all our energies to address his complex needs, while maintaining our own health and a sense of balance in our family life.
In his late teens, Justin entered into a very difficult period of disturbing behaviors, such as aggression and self-harming. We were completely unprepared to deal with this extreme situation. It was a struggle from day to day. Our lives were turned upside down and we were often in fear of his unpredictable outbursts.
We desperately needed help. The Montréal West Island Integrated University Health and Social Services Centre (MWI CIUSSS), through its Intellectual Disability, Autism Spectrum Disorder and Physical Disability Programs Directorate, provided us with the support of a dynamic team made up of a psychiatrist, psychologist, educator, social worker and nurse. This team took a systematic approach to analyzing Justin’s serious behaviors and coaching us in practical coping strategies. This support helped stabilize Justin. But the chronic nature of his profile, his need for an ongoing high level of support, and our limitations meant he needed to live in a specialized residence.
The MWI CIUSSS proposed such a residence (called an Intermediate Resource or IR) in Sainte-Lucie-des Laurentides. It is managed by Amanda Abergel (accredited as a psychoeducator) and Alain Lessard, (accredited as an auxiliary nurse) who have over 25 years of experience. Their very effective approach is rooted in the unconditional acceptance of each client. Ms. Abergel: “Each of our clients is a complete human person, with strengths and weaknesses, like all of us. I believe that it is an absolute must to see our residents as equals and help them to develop their potential.”
The caregivers have developed best practices and interventions which dramatically reduce challenging behaviors and ensure a high quality of life for their clients. They work from the conviction that each person can become responsible for his/her actions through increased awareness and skills development. “Emotional sensitivity” workshops allow residents to identify their negative impulses and make better choices than challenging behaviors. A schedule of meaningful and fun activities is central to the strategy: helping with certain tasks, feeding horses, outings to movies and restaurants, taekwondo, drama workshops, walks in the countryside.
The caregivers cultivate open relationships and clear communication with parents whose own knowledge is fully integrated in the interventions of staff. Another critical success factor: the retention of highly engaged and competent staff who love their work and can connect with the clients. Continuity of staff plays a key role in the clients’ progress. Amanda Abergel: “Our residents appreciate that our staff are very laid back and accept them for who they are, able to see the real person behind the challenging behavior. Staff consider their work as an opportunity to make a big improvement in the lives of our clients.”
But there are challenges in managing such a specialized residence, as noted by Ms. Abergel: “Responding to the needs of these special clients takes a lot of attention and energy. There is a need for an ongoing high level of resources to sustain support measures and avoid regression of the clients. We and our staff also need to be vigilant about our own health to be fully available to them.”
The Intellectual Disability, Autism Spectrum Disorder and Physical Disability Programs Directorate is responsible for the standards of care of IRs and provides the caregivers with several essential professional support services. Martin Carrière, Manager of Residential Services commented: “Supporting persons with challenging behaviors is a complex undertaking. Our specialists bring a variety of skill sets to work with the caregivers in implementing concrete developmental objectives for each client. The approach used in this IR is exemplary.”
Thanks to the care and dedication of Ms. Abergel and Mr. Lessard, and the professional support from the MWI CIUSSS, Justin has thrived. He can express his feelings and most often not resort to challenging behaviors when in a state of anxiety. His language has flowered. We now have a deep peace of mind, knowing he is on such a good path. But given his lifelong vulnerability to challenging behaviors, he and others with his profile will always need this kind of specialized environment and the significant resources required to sustain their positive development.
A truly humane society is one that cares for its most vulnerable members. There, away in the Laurentian hills, one very dedicated couple is showing us how to do it.