Ontario is in the midst of a hospital crisis.
Hospitals were already facing severe bed shortages before the COVID-19 pandemic, and a combination of factors, including staff shortages, delayed care due to COVID and access issues across the health care system, has made it even more challenging to meet the need for hospital care.
Amid this crisis, there is a pressing need to address the issue of supporting patients who require an alternate level of care (ALC). Patients are designated ALC when they no longer require hospital care but there is nowhere appropriate for them to be discharged to. The result is these patients remain in hospital beds that are no longer appropriate for them and the hospital is left with fewer beds for other critical care patients.
People with developmental disabilities are more at risk of becoming ALC patients. A recent study found they are 6.5 times more likely to become ALC patients than people without developmental disabilities, and almost half of people with developmental disabilities also have a psychiatric condition, or, in other words, a dual diagnosis.
Those with a dual diagnosis often have complex needs, including co-occurring physical disabilities and chronic health conditions, making them even more likely to become an ALC patient.
“Often hospitals don't know how to support ALC patients with a dual diagnosis to leave the hospital or how to get connected with the right resources in the community," says Dr. Avra Selick, Project Scientist, Provincial System Support Program. “Right now the system can be very complex, confusing and variable across the province."
Responding to this need, the Azrieli Adult Neurodevelopmental Centre's H-CARDD team, in partnership with CAMH's Provincial System Support Program, has developed Supporting Alternate Level of Care Patients with a Dual Diagnosis to Transition from Hospital to Home: Practice Guidance, a comprehensive set of principles and core components designed to provide guidance for the successful transition of ALC patients with a dual diagnosis from hospitals to community settings in Ontario.
As part of creating the guidance document, the team spoke with more than 100 people across Ontario from diverse sectors, including specialty psychiatric hospitals, general hospitals, community health and developmental services. Within these sectors, the team spoke with individuals in leadership, planning, and managerial roles, direct service providers, researchers, and those who had personally experienced an ALC hospitalization, and their families.
“While drafting this guidance we heard many tragic stories about what happens when these supports are not in place, but we've also learned that it doesn't have to be this way," says Dr. Yona Lunsky, Scientific Director, Azrieli Adult Neurodevelopmental Centre. “With the right supports, people can thrive in homes in their communities."
At its core, the report serves as a valuable resource for health care practitioners, developmental service providers, policymakers, service planners, ALC patients, and their families. Moreover, many of the transition principles and components described in this report, if made available prior to hospital admission as well as once hospitalized, may also help to prevent some people who are hospitalized from becoming ALC in the first place.
“We hope that this report will give providers in the health and developmental services sectors guidance on how to work with each other, as well as with patients and families, to support successful transitions," says Dr. Selick.
Some key takeaways include:
Transition planning should be person-centred, culturally sensitive and trauma-informed. It should begin by understanding what the person, and those who know them best, think is most important to support a successful life in the community and live as independently as possible.
A successful transition requires clear, consistent communication and coordination among the patient, their family and their hospital, community health, mental health and developmental services providers.
Health equity, anti-racism and anti-oppression should be foundational to all aspects of care, including transitions, with particular attention to ensuring equitable access, positive service experiences and optimal outcomes for diverse individuals living with a dual diagnosis.
On their experiences, former ALC patients, family members and service provides note:
- “You need to believe in yourself that you can do it. Have confidence in yourself, because it can be really hard," says a former ALC patient.
- “Lines of communication are number one – you have to be able to communicate with every partner – agencies, community – with the patient at the top of it. Don't leave him out because this is his life. Everything branches out from him," shares a family member.
- “We can't really plan a good positive outcome in transition if we haven't actually figured out what's going on in the first place…So we have to understand what's going on medically, psychiatrically and then we can plan for the transition out," a hospital provider says.
The complete report, executive summary, easy-read version, and first-person stories from former ALC patients and their families can be accessed here.