From hospital to home: Amanda and her parents Robert and Sarah

Amanda and her parents Robert and Sarah

“They should respect people.” - Amanda


Who is Amanda?

Amanda, a sociable young woman in her 30’s, has an intellectual disability, a physical disability and a number of physical health concerns related to her genetic condition. She sometimes has trouble understanding time and money concepts, organizing her belongings, and detecting when people are taking advantage of her. Quiet-spoken and easy-going, she always wants to please the people around her. She loves arts and crafts, conversing with friends, cooking, watching movies, and playing wheelchair basketball. After her mother died in 2016, Amanda was diagnosed with depression, for which she received medication and psychotherapy. Then in 2019, she started having seizures. These episodes became progressively more severe which required her to be hospitalized several times. In May 2021, Amanda, who was living with her father and stepmother, Robert and Sarah, suffered a series of particularly severe and prolonged seizures. After of number of brief hospitalizations and unsuccessful discharges, Amanda was ultimately hospitalized for 16 months.  


What led to Amanda’s hospitalization?

At first, Amanda was admitted to the neurology unit of the hospital, where a video EEG  determined that her seizures were non-epileptic. The hospital discharged her multiple times, but with no success - some of these discharges lasted only a few hours before she had another severe seizure and was readmitted. Prior to her final hospitalization, her father incurred an injury that required surgery while trying to prevent Amanda from falling during a seizure. After Amanda was readmitted, the neurologists indicated that they could not treat her and transferred her to the psychiatry unit.  


What were the challenges hindering Amanda’s return to the community?

The psychiatry team tried different medications to treat Amanda, but the seizures continued. After a month, the doctors asked her family to take her home. Robert and Sarah contacted their local home and community care centre to inquire about getting emergency on-call or in-house 24/7 support for Amanda. However, the centre could only offer one hour of support per day, which was not enough help to keep her safe. In spite of persistent requests from the psychiatry team to bring Amanda home, due to the combination of insufficient support and Robert’s injury, Robert and Sarah refused. After three months in the psychiatry unit, and with no suitable supportive housing options available, she was moved to a reactivation centre affiliated with the hospital. Reactivation centres are facilities that provide care for patients who no longer need acute care but are waiting for an appropriate community placement. These settings are not designed for people with developmental disabilities. Amanda only received medication management and was not given any non-pharmacological treatment such as IV rehydration for her seizures, physiotherapy, speech and language therapy or a specialized diet for her diabetes. Social workers from the hospital, reactivation centre and local home and community care centre tried to convince Robert and Sarah to accept inadequate housing options such as boarding houses and shelters. However, Amanda's parents, horrified at the idea of her living in settings that were not able to meet her needs and keep her safe, refused these placements threatening to contact politicians and the media if she were discharged to one of them.


“It took more than a year for Amanda to finally move into her apartment. The barriers we faced included insufficient expertise in developmental disabilities within the hospital staff, lack of a centralized process to find housing, and delays getting the budget approved."

- Sarah, Amanda’s stepmom


How did things change for the better for Amanda?

Thankfully, Sarah was an experienced advocate. She consulted a professional who had previously worked with Amanda and obtained a referral to a Complex Care Coordinator with the Community Networks of Specialized Care (CNSC).

The coordinator convened a team from multiple agencies to determine the type of support Amanda would need and to search for suitable housing options. The coordinator also chaired regular inter-agency planning meetings in which Robert and Sarah participated. Although Amanda was invited to join as well, she typically chose not to.Virtual meetings with a coordinator, her stepmom, dad

Due to the COVID-19 pandemic, the meetings were conducted virtually, which made it easier for everyone to participate. After a three-month search, the coordinator found an accessible apartment for Amanda. Over the next nine months, a budget was developed and approved and staff were hired and trained. Amanda and her parents visited the apartment before she moved in and the coordinator worked with agency staff to facilitate and support the transition of her care. Following an extensive 16 month stay in the hospital and reactivation centre, Amanda was finally able to move into her new home.

How is Amanda doing post-transition?

Amanda now lives in a fully accessible high-rise apartment building, located fairly close to her parents' home. Her housing is considered “intensive support”, which means that Amanda receives individualized and flexible support 24/7 and can make choices about most aspects of daily living and recreation. She has a team of agency support workers who help her with adaptive skills and who care for her when she has a seizure. Throughout this process, Amanda has received support from her family physician and psychologist, who have diligently evaluated and updated her medications while offering psychotherapy sessions. In addition, after considerable advocacy by Sarah and Robert, the local home and community care centre provides a nurse to give intravenous hydration when seizures last for 36 hours or more, and paramedics have special permission to bring Amanda home instead of the hospital if she has a seizure while in the community. 

Amanda likes her apartment and, since moving in, has established a good routine. She and her family are very satisfied with the quality of the support that she receives, which allows her to live in the community and do the activities she enjoys. Her mental health has also improved and she has a great relationship with her roommate. She goes out for walks and lunch in her neighborhood, meets with friends, and attends multiple programs doing things that she loves.


Amanda waving to her friends that she’s meeting up with in the neighborhood.

Notwithstanding these successes, Robert and Sarah have ongoing concerns for Amanda’s physical health – she continues to have frequent and severe seizures, and the gastrointestinal problems associated with her genetic syndrome have worsened. Although getting the health care she needs will continue to be challenging, Amanda's support team actively advocates for better health care on her behalf.

What key components helped with Amanda’s hospital-to-community transition?

Amanda'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 1 - Ongoing information sharing - Although hospital and reactivation centre staff were not always able to participate, biweekly meetings were held with Robert, Sarah and the community health and developmental service providers involved in Amanda’s transition to share clinical updates and explore possible placement options.  

Component 3 - Patient and family involvement in transition planning – The family was routinely involved in transition planning meetings and Amanda was invited to join, though she typically chose not to. Additionally, her parents tirelessly advocated to obtain the best care and housing options for their daughter. The family firmly believes that their active involvement and advocacy played a crucial role in aiding Amanda’s successful transition from the hospital to the community.

Component 4 - Patient, family and community provider education, training and support - The support staff at Amanda's apartment building received training on safely managing her seizures at home, instead of sending her to the hospital.

Component 6 - Gradual, overlapping and coordinated transitions - The involvement of a range of specialized staff, including a Complex Care Coordinator with the CNSC and the developmental services agency providers, were instrumental in driving the planning process forward. These individuals knew who to contact to make things happen. They met with Amanda at the reactivation centre, supported her in visiting her apartment before moving in and provided ongoing support after the move.  In addition, an outpatient psychiatrist from the hospital followed Amanda for a few months after she moved from the hospital to the reactivation centre.

Component 8 - Coordinated follow-up medical and clinical care - Amanda has a number of health care providers who ensure she receives the care she needs in the community. This includes a family physician and psychologist who have worked with Amanda for 15 years, and local home and community care centre nurses who can provide intravenous rehydration in cases where Amanda’s seizures last for three or more days. A senior member of Amanda’s support team is active in ensuring that medical care is provided.

Component 9 - Appropriate and timely housing and community support – Though it took some time to get in place, Amanda’s current housing and supports are excellent. Her home environment provides her with access to continuous, individualized support, as well as programs to engage her in a meaningful and fulfilling way.

Component 10 - Sufficient and flexible funding - Based on Amanda's health and community support needs, the transition team put together a budget proposal, which was approved by the government. This allowed Amanda to have the right kind of home with the right level of support to allow her to live safely in the community.

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