By Louise Kinross
Two years ago we had the assessment necessary for getting an adult with an intellectual disability onto the list for community services, including group homes, in Ontario.
Ben, D’Arcy and I spent 3 ½ hours filling out what was a highly cumbersome, overly complicated survey that was supposed to measure how much support Ben needed.
Given we'd taken the morning off school and work it was galling to be told during the assessment that there were no services to be had.
We were asked to pick a lead agency that would be responsible for Ben’s needs, and we chose L’Arche, the homes for people with intellectual disabilities developed by humanist Jean Vanier.
Since then we haven’t heard a peep. Recently we met with a woman who helps families plan for their child’s transition and she encouraged us to reconnect.
This is the update D’Arcy provided after a phone conversation with Developmental Services Ontario:
-There are no longer “lead agency” designations (why were we not informed of this?).
-Ben needs 19- to 24-hour support in a home with no greater than 3:1 resident/support worker ratio, but these types of homes are non-existent. Any available spots would go first to people with complex medical needs.
-The list Ben is on is not a waiting list, but a needs-list. We are low priority because our family has two working parents.
-To have any hope of getting a call-back, it was recommended we raise the resident/worker ratio to 5:1.
Every parent dreams that their child will lead a rich adult life, one in which they choose to do things that matter to them, and are supported in a way that allows them to thrive and be happy.
To have your child’s future reduced to a conversation about worker numbers, with no discussion about the actual group home, its philosophy, the way it works, its strengths and weaknesses, where it’s located, and who else is there, is a slap in the face.
Back in March, I tweeted about the Select Committee on Developmental Services looking at the crisis in housing for adults in Ontario. At that time, the committee said there were 12,000 Ontario adults on a list for group homes with a wait of 20 years. TWENTY years. The report also notes that 2,300 families of adults are waiting for respite in a province with only 225 available respite beds.
It’s common knowledge that the only time people are placed in group homes long-term is when their parents die. Once that happens, who will be there to ensure the fit is a good one? Our experience has indicated that this is a numbers game that has nothing to do with the human being involved and their hopes and dreams.
Today I was thrilled to see this challenge to find solutions to the crisis by the Ontario Ministry of Community and Social Services and MaRS, the medical research and social innovation hub in Toronto.
In defining the problem, the MaRS Challenge Brief says that $1.15 billion is spent on residential support for about 18,000 adults with developmental disabilities in Ontario each year, but 7,300 adults are on a wait list (not sure about the discrepancy from the Developmental Services Committee numbers). The brief says that as of July last year, there were over 800 complaints by families to the ombudsman.
The Community and Social Services Ministry has partnered with MaRS Solutions Lab to develop and test new approaches to transform the system.
The challenge question posed was: “What would homes and communities need to look like for citizens with developmental disabilities to achieve citizenship: to live in the communities they choose, to grow and lead full lives?”
Six areas of research were identified. The paper says next steps are to:
-Convene partnerships across the four to six ministries of the government that impact people with developmental disabilities
-deepen understanding about people with developmental disabilities and citizenship
-Explore pent-up demand and information strategies that better inform future planning
-Explore and co-design citizen-centred alternatives. “Many social problems are often defined from an institutional perspective,” the brief says. “The lab takes a different view. Using tools from design thinking we try to gain a deep understanding of the problem from a citizen or user perspective. Not by just analyzing the numbers, but by also studying the people."
-Transform the system by exploring how to increase capacity to support family- and community-led innovation.
-Clarify and quantify developmental services objectives that are citizen-centred.
A number of our readers are very involved in these issues. Please give us your feedback on the details of the challenge PDF!