Monique and her mother Kathy
“ You need to believe in yourself that you can do it. Have confidence in yourself. Because it is really hard.”
- Monique
Who is Monique?
Monique is a young Francophone woman in her early 30's who has always kept herself busy with multiple hobbies and activities. She loves to swim, regularly walks the family dog in her neighborhood and enjoys going to the movies with her support staff. Monique has a great sense of humour, is very sociable, and is good at expressing herself in French and English. Monique, who has a moderate developmental disability and is in remission from an autoimmune neuromuscular disorder, used to live with her parents in the Eastern region of Ontario prior to her ALC experience. In 2021, after a series of emergency department visits and brief hospitalizations, she was admitted to a mental health unit where she stayed for eight months.
What led to Monique’s hospitalization?
Though her family was unaware at the time, in January 2019, Monique experienced a distressing incident involving a support worker that greatly affected her emotionally. Following this, Monique’s mental health rapidly deteriorated, leading to frequent meltdowns, self-harm, suicidal thoughts and attempts. In October 2019, Monique was finally able to share with her family and the police what had happened ten months prior, but no charges were filed, leaving Monique devastated. Despite having supports in place, including a specialized dual diagnosis mental health team and a Francophone psychotherapist, her mental health continued to deteriorate, and Monique had multiple short-term hospitalizations. During the pandemic, support workers were unable to work due to public health restrictions, so Monique’s sister quit her job to provide care. However, Monique’s aggression and suicidal thoughts intensified and in May 2021, she was admitted to the mental health unit of an English-language regional hospital.
What were the challenges hindering Monique’s return to the community?
Stepping into an English-only hospital environment, Monique and her family encountered a language barrier. Only two nurses on staff were able to communicate fluently in French. In contrast to the hospitals where Monique had been hospitalized previously, this hospital did not mandate bilingualism among their staff. This led to challenges trying to manage communication between the hospital and the French-language developmental service agency involved in Monique’s care. With no other option, Monique’s family took on the role of translators, ensuring that she received the care and attention she needed. When the unit called Monique’s parents to pick her up three days after her hospitalization, they refused with great heartbreak. The hospital considered discharging her to a shelter, but her mother, Kathy, drawing from her experience in the social services sector, advocated for Monique’s unique needs. Fortunately, a psychiatric nurse on the dual diagnosis team helped prevent this inappropriate discharge. Monique remained in hospital and was designated as ALC.
How did things change for the better for Monique?
The ALC designation unlocked additional resources, due to a new initiative by the Ministry of Children, Community and Social Services (MCCSS) for ALC patients. This initiative provided emergency funding to the regional Francophone agency to support Monique’s transition to residential care.
However, Monique did not feel comfortable there. The hospital and the developmental services agency respected Monique’s decision. As no families were available within the agency, a new host family was vetted, a very time-consuming process made even lengthier by the pandemic. Finally, after eight months in the hospital, Monique was able to move in with her new host family in December 2021. Unfortunately, the assigned hospital psychiatrist chose not to be involved in this process, nor did he contact Monique’s community psychiatrist with the specialized mental health team. This lack of involvement led to repercussions after Monique’s discharge, when it was discovered three days before Christmas that there were no repeats on her medications.
“Having both worked in developmental services followed by a thirty-year career each in social services, we still had difficulty navigating the obstacles of the health care and developmental services systems. We found it a heartbreaking process, whereupon we had to basically designate our child as homeless for her to receive the care we could no longer provide. It took two and a half years from the first agency involvement to a new home for Monique, during which time our family was in crisis. Persistent advocacy was key.”
- Monique’s parents
How is Monique doing post-transition?
Unfortunately, Monique is once again looking for a new home. While her current placement appeared promising, both Monique’s family and her host family had recurring concerns. In May 2023, a series of medical events led to Monique being hospitalized for another two weeks. Consequently, both the developmental services agency and her parents have decided that it would be best to find a new housing situation for Monique. Although kindhearted and caring, the host family recognized they cannot provide support for Monique over the long term. They offered their home once again, this time on a temporary basis, until a more permanent housing solution can be found. These shifts in housing, although initially extremely disheartening for Monique and her family, can happen. Thankfully, Monique has a strong support team who are providing additional interim supports so Monique can live safely with her current host family until they can find her a permanent home.
She also has the opportunity to enjoy biweekly outings with a worker supported through individualized funding (Passport funding)
"Appeler la ligne de crise, c'est très important. Parler à quelqu'un d'autre et vider le cœur, ça peut t'aider. Je peux le faire en anglais ou en français, ça me dérange pas. Les autres personnes où tu restes sont capables d'appeler la ligne de crise aussi."
- Monique
Translated English - "Calling the crisis line is very important. Talking to someone else and getting it off your chest can help. I can do it in English or French, I don't mind. Other people wherever you live can call the crisis line too."
– Monique
What key components helped with Monique’s hospital-to-community transition?
Monique's successful transition from hospital to community was facilitated by several crucial elements. These elements align with some of the 10 core components identified in the practice guidance document.
Component 3 - Patient and family involvement in transition planning - Monique's parents have been actively involved in Monique’s transition from hospital to community including advocating for Monique to access appropriate housing. Monique and her parents were able to visit both potential homes before the final one was selected.
Component 5 - Transition and Community Support Plan - A lot of work went into finding the right home for Monique. Kathy and the psychiatric nurse advocated to stop the hospital from discharging Monique without safe and secure housing. Additionally, the developmental service provider was incredibly helpful in securing a host family that appeared to be the right fit for Monique.
Component 6 - Gradual, overlapping and coordinated transitions - The hospital social worker and the supervisor of the community agency functioned organically as co-leads for transition planning.
Component 10 - Sufficient and flexible funding - The MCCSS provided emergency funding to the regional Francophone agency working with Monique once she was hospitalized, which allowed the agency to secure residential care for her. Currently, the MCCSS is providing renewable funding for a 24 hour/week developmental service agency employee to work with Monique in her home and in the community.