Thank you for inviting me here today.
Safehaven is an organization that provides community-based care—respite and residential—to children, youth and adults who live with complex medical needs and disability. We've been around for over 35 years. We have six locations in the greater Toronto area.
We believe our clients have the right to belong in all aspects of society. We're continually striving to advance our work towards inclusiveness with our #WeBelong movement.
Today I would like to highlight how investments into community-based care models for children with disabilities can liberate capacity in our struggling hospitals, provide choice and enhance the system of care. As well, I would like to identify the need for providing enhanced funding to support individuals directly, along with the need for creative housing solutions to ensure that individuals with disability are able to transition into adulthood with dignity and respect when they turn 18.
While our organization operates in Ontario, I know I speak for my colleagues across the country, as our funding and systems of support for vulnerable individuals in Canada aren't adequate.
Safehaven is a unique provider in the province and across the country. We care for children with incredibly complex needs and rare conditions. We are a critical part of the care continuum with our children's hospitals, which are continually under siege with capacity limitations and challenges with health human resources. Many of our clients come from SickKids and Holland Bloorview after very lengthy hospital stays.
Our current system is failing our kids, but we have the opportunity to make it right. Safehaven cares for the most vulnerable children, the ones who were never expected to make it. However, thanks to medical advancements, innovations in care and some of the best pediatric hospitals in the world, these children's lives are being saved, and many are now living into adulthood.
The physical, emotional and financial burden on families who care for a child with complex special needs is enormous. If they are able to care for their child at home, almost always one of the parents is required to quit their job and stay at home as a full-time care provider. Some families cannot cope and resort to giving their children over to government care. It's an act of desperation, but they have no other option to access help, support and services because of the long wait-lists. I'm sure many of you here today are parents and see this as being unconscionable, yet this is happening in our country.
Ontario's Financial Accountability Office detailed that the wait-lists for children's services grew from 1,600 in 2012 to 27,600 in 2020.
Safehaven regularly hears first-hand from families in need of services for their children with developmental disabilities. We are met with requests weekly from families across the province for respite care. We were able to accommodate only half of the families who requested care, due to capacity and eligibility restrictions.
There's a particular challenge with transitioning from children's services to adult services, because these children were never supposed to make it to age 18. An integrated system of care was never developed for the duration of their lives. Parents describe going from childhood into adulthood as being like falling off a cliff. Instead of celebrating their 18th birthday, this is a dreaded milestone. As well, individual funding supports are extremely low for these children who age into young adulthood, if they survive, and this forces them to live below the poverty limits.
As Bill C-22, the Canada disability benefit act, progresses towards the Senate, I want to emphasize the importance of supporting programs like Safehaven, which promote inclusionary care for the most vulnerable. Specifically, children and those who transition into adulthood need a stable income and affordable housing.
These individuals deserve a right to life as much as anybody else or any other healthy child. A young adult should not be sent or even considered for long-term care.
Our proposed solutions focus on investments that need to be made now to make available spaces and programs for children, youth and adults and address gaps in our current system, enhance support for families who want to keep their children at home, and provide good respite programs and residential programs for parents as they age and can no longer care for their children.
Also, medically complex individuals need financial support to ensure that they escape poverty. The very complex children I'm speaking about today need a lifetime of care, from infancy to adulthood.
These are considered medical miracles. We need to ensure they are living longer and we have a system in place that can care for them.
They will never outgrow their disease. They will never recover or get better. They have the right to a safe and secure home and a system of care while they are alive. If we do not address the needs, the gap will only continue to get wider. These vulnerable children and their families deserve better.
The mantras of Safehaven and #WeBelong align with the four pillars of Bill C-22, the new legislation being proposed, with financial security, employment, accessibility, inclusive communities and a modern approach to disability.
We should all aspire to achieve a world where our kids belong to and are part of inclusive environments and communities. Thank you.