We Accept the Challenge: Re-Imaging an Innovative System of Care and Living the Best Life for Individuals with Medical Complexities

Anyone who has had the privilege of working with children with complex care needs has seen that children do better when their caregivers provide exceptional care. Historically, the life expectancy for children with developmental disabilities is low. However, with the advancements that have been made relative to medical care and treatments, the life expectancy for children with complex care needs has increased, allowing them to age into adulthood and live a more meaningful life.

While we appreciate these advancements, living a life of purpose with medical complexities requires alignment of many systems and services from health, community, home and the school system. This blog will focus on the systemic barriers for children and adults with complex care needs as they try to navigate as system that is siloed and misaligned, and the innovative work we are doing here at Safehaven to break down these barriers.

The Barriers Faced by Children and Adults with Complex Care Needs

Children and adults who have complex care need often have multiple coinciding chronic issues that are related to their conditions – many may not even have a clear diagnosis. These individuals with medical complexities represent a diverse group of people who fall under the spectrum of conditions, needs, limitations and medical fragility. Barriers like these facing children and adults with medical complexities and their families can prevent them from accessing the care and services that they need. As these individuals age and grow, needs change and supports from affordable housing become essential to these young adults and a significant component that needs to be considered in the context of health and well-being.

Although individuals with medical complexities are a mere fraction of all the population, their unique needs results in a substantial use of health care services and require an integrated approach to care and services to living their best life. The number of number of individuals with complex care needs has increased over time and are living longer. The issues of needing a more cross sector, cross service integrated approach has been needed for decades, however, we are at a point where the inattention and siloed thinking is having an impact on flow across our system from acute to rehabilitation to community to home and school. Investments need to be made to create a provincial approach to leading and integrating the complexities of this population, and new models in the community outside of highly expensive acute or post acute beds that are desperately needed for more acute individuals. This will go far as well in reducing wait times to care, freeing up capacity in other sectors for those individuals who need this, and developing a close loop network for amazing individuals. As well, a fresh lens with leadership that fully understands the nuances and complexities of these broad issues and ability to lead with intent to make an impact for this population.

Safehaven Breaking Down Barriers and Creating Innovative Solutions

Our organization’s mission is to provide high quality, family centred and community-based residential and respite care for individuals with complex care needs. We recognize the gap in our community that exists for individuals living with medically complex needs, especially for these individuals transitioning into adulthood. As identified, these gaps and silos exist across children’s and adult systems as well as sectors such as health, social services and education. Every day we have the privilege and responsibility of serving one of the most vulnerable populations in Canada. Our clients have multiple disabilities and complex medical needs – needs so multifaceted that their families and caregivers are unable to support them at home. Daunting clinical requirements, social isolation and increasingly scarce community and financial resources can be debilitating for many exceptional children, families, and caregivers.

Every day we see three main issues impacting our exceptional clients and families. First, the lack of support for children living with complex medical needs as they transition into adulthood. There is limited community care infrastructure for children living with these conditions. Secondly, there is very little community support for children and adults who require life-sustaining technology, forcing them to live their lives in the hospital. There is a critical need for care innovation that supports the transitioning ventilator dependent individuals from the hospital to the community. This transition would reduce Alternate Level of Care (ALC), liberate acute rehab beds, and enhance clients’ overall quality of life. Finally, there is a lack of enhanced nursing respite in the community for medically complex individuals which greatly impacts the population we serve. When the accessibility of respite services is made unavailable, families lose their ability to cope and often seek support from hospitals or need to apply for residential placement.

Safehaven, has been engaged in activities to envision an innovative system of care and living in the community for these individuals across the lifespan that is a model for the future and can be transferred to other areas of the province and beyond. We have engaged extensively with our partners, clients, families, knowledge leaders to think about creating a system of care and living for these individuals that is inclusive and aligned to relevant needs. Our plans include integrated systems of care that are aligned with mutually inclusive spaces for them to grow as children and adults with the maximum amount of independence they can achieve. Our partnerships are extensive with individuals in health, social services, education and private developers to design spaces that are build on the best of practices that we know today. Collaborating with universities, private developers and utilizing funding from the National Housing Strategy has enabled us to think differently about design and mutual inclusion that would be considered the prototype for the future. Ultimately, our goal is to reflect a future of care and living that pushing the envelop on innovation, creativity and mutual inclusion that support vulnerable individuals with a path forward to live with dignity and respect. This future we are envisioning is here and we are ready to advance this ahead with our new strategic plan that will have wins for our clients and give back capacity to our partners.

2022 will be an important year for Safehaven as we prepare for our launch of our new strategic plan and priorities that will contribute to integrated supports, services and housing for our exceptional individuals. Plan 2022-2027 aims to deliver approaches that are innovative, forward thinking and closes the gaps that currently exit in our system for individuals with medical complexities and challenges to live their best lives.