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Autism Ontario – August 2021 Newsletter
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Many families will tell you, taking care of a relative with a developmental disability is often comparable to working a full-time job. Families want what is best for their relatives, including the support they receive. By doing so, they tend to involve themselves without counting, but they must also recognize their limits to avoid exhaustion.
People with developmental disabilities and their families approach SCS for many reasons.
In certain situations, people need support from SCS for a short period of time. It’s often the case soon after a person has received the diagnosis. At that time, the person and the family typically know very little about the system, and that’s normal, since they didn’t really have any reason to educate themselves before the diagnosis.
Families must then confront a steep learning curve and SCS supports them on this journey. Although SCS does not offer residential services or day programs, we do provide people and families information about the opportunities, resources or services that meet their needs. In this way, we help to alleviate the heavy burden on their shoulders.
In other situations, the needs can be more complex and can intensify over time. SCS adapts its support to each person, who is at the heart of the planning.
This has been the case for Camila and her family. Camila has been diagnosed with Angelman syndrome. She is non-verbal, epileptic, has a serious developmental disability and has numerous support needs.
Her first contacts with SCS date back to 1995, when Camila’s family returned to Canada from an assignment abroad. Since then, they have needed the support of SCS given Camila’s situation.
“A case manager offers many advantages,” Camila’s mother explains to SCS. “When someone supports a relative, they must tackle the challenges together. The process is long and often complicated, and many agencies are involved. A case manager helps to navigate all this, in a professional and patient manner. They also listen and suggest steps, while always being available, positive and determined. Listening is important.”
For a period of time, Camila did not need the support of SCS. Then, she became an adult and applied through Developmental Services Ontario (DSO) to receive adult services and support funded by the government of Ontario. Camila’s situation became urgent during her application. DSO referred her to residential services by adding her on the waiting list until a place in a suitable home becomes available.
In 2016, Camila’s family informed SCS of the situation and her file was updated, indicating important changes to her parents’ health. A bilingual case manager has been assigned to the file. The family is francophone and speaks French at home.
The case manager noted that, to ensure Camila’s health, it is important that she remains active and be continually stimulated. She needs to walk, swim, continue to develop her fine motor skills, as well as other activities.
Here’s what Camila’s mother has to say on her case manager’s work at that moment: “The case manager took many steps for Camila, and this, shortly after taking over the file, in particular by making it possible for Camila to participate in her day program 4 to 5 days a week. And when the program increased its rates dramatically, the case manager identified financial solutions to allow her to continue to attend her day program.”
Thanks to her day program, Camila is exposed to all kinds of activities: she swims (she loves water), visits farms, goes on outings in the community, can seek refuge in the Snoezelen room (a multisensory room) when she is too anxious, explores all kinds of manual activities with the help of the workers, prepares cookies hand over hand, listens to tales and music (another favourite activity), and much more!
In 2017, after several years of waiting, DSO communicated with the family to inform them that a place became available in a potential home for Camila. The case manager then worked with Camila and her family to figure out if this was the right place for her. That was the case and she moved into her new home.
The match was successful, but the case managers’ role didn’t stop here. A case manager’s role is not only to “connect” people to services. If necessary, the case manager will also help with the transition. It is a difficult step from an administrative and practical standpoint with all the paperwork and work needed to make the move happen. It is also difficult from the psychological and adaptation side, as the family needs to get used to the idea that their relative doesn’t live with them anymore.
Here’s what Camila’s mother has to say about her case manager’s recent work: “Nowadays, our case manager helps us ensure that Camila’s experience where she lives is the best possible. Our case manager intervenes and suggests solutions when there are disagreements regarding certain ways of doing things in her home. We sincerely consider ourselves lucky to have our case manager. We are very satisfied with her invaluable help. Our case manager is bilingual, competent, patient, punctual regarding communications, hard-working, empathetic and very experienced.”
Please visit our website at scsottawa.on.ca for more information on the services offered by SCS. You can also contact SCS by calling 613-748-1788.
“Cooking is not difficult. Cooking is easy.”
Tomas works in an Italian restaurant’s kitchen. He takes care of dishes and helps with the cooking, alongside six other kitchen staff. “It’s no problem,” he says. The Bistro is close to home, so Tomas can walk, take the bus or bicycle to work.
Tomas works at the restaurant from Monday to Saturday and still finds time to play on the Special Olympics floor hockey team at Canterbury High School. His Case Manager at Service Coordination suggested the Special Olympics team when she learned that Tomas played ice hockey and soccer in Slovakia.
Keeping active is important to 31-year-old Tomas. He swims and rides his bicycle. He has noticed the children here are more focused on computers and stay home “playing games shooting stuff”, not playing outside like he did.
Tomas and his mother immigrated to Canada from Slovakia in 2005. He had trouble understanding the papers he needed to fill out to apply for a job and sometimes would make mistakes in the job applications. “I like things to be correct,” he says. He soon learned about Service Coordination from his mother’s friends. The friends said Tomas could get help to find a job.
“Service Coordination is very good. I can call my Case Manager when I need help with this paper or that paper and she says ‘sure come in,’” says Tomas. “When something comes in the mail and I need help, I can call my Case Manager. No problem. We can meet. I am happy for this.”
Karen knows the advocacy and determination that comes with having a child with many disabilities. She and George, her 18-year-old son, have faced more uncertainty than most. They lived for 21 months at a hotel while waiting for City of Ottawa affordable housing after her marriage ended. Karen and George have now found stability and support.
“I am me and I am George,” Says Karen. “I am his advocate.”
George was in and out of hospital for the first 12 years of his life. He is on the autism spectrum with complex medical needs and a profound mental disability. He’s non-verbal.
George smiles a lot and conveys his needs to his mom through gestures and noises. He likes sounds. He knocks on surfaces and watches Teletubbies. George also feels over-stimulated easily. He pulls his shirt over his face when he needs a moment to himself.
There were times when Karen could not afford to put gas in the car. In 2001, their first Case Manager at Service Coordination helped Karen apply for funding for away-from-home respite, physiotherapy and to make ends meet. The caseworker also taught Karen how to interview special needs workers to support George’s complex medical needs. Karen describes packing up in 2014 when her marriage ended. “Service Coordination was a life raft that I clung to,” she says.
Their current Case Manager, “knows services inside and out,” says Karen. “He helps us flesh out our needs and matches the right service to the need.” The Case Manager documents each meeting and sends Karen a follow-up email outlining what he will do and what Karen will do. They review at the start of each meeting.
George attends school full days, where he gets speech therapy and occupational therapy. Karen is also preparing for the day when George will finish school. George is transitioning from children’s services to adult services—a process involving assessments of George’s support needs and the activities he’d like in his life.
Karen and George are looking forward and moving ahead. To learn more about Service Coordination call 613-748-1788.
