1,000 signatures reached
To: MPPs, Lisa Macleod
Save Independent Facilitation
Dear Minister - please formalize funding for a permanent Independent Facilitation program.
Why is this important?
People with developmental disabilities and their families are just learning their life-line to inclusion is about to be severed by our provincial government “for the people.” There has been a terrible misrepresentation of what Independent Facilitation is and what this $3.1 million program means to our most vulnerable neighbours and their families. So let me try to explain.
Imagine you're the loving parent of a child with a moderate-to-severe developmental disability. Imagine the almost all-consuming amount of stress this has caused you - first, the diagnosis, the battery of tests and appointments, wanting nothing more than a clean bill of health for your loved one, the anxiety of not knowing how severe it will be, then the crushing feeling of all the expectations you had around family life and raising children slipping away.
Imagine that coupled with getting to experience the sweetest little person; the unmitigated joy you see in their smile and eyes when you make them laugh with delight. This person, who you know better than anyone, yet who, chances are, will not be known in this way by anyone else. Imagine the struggles of raising this child through school, where kids can be so needlessly mean, especially to those more vulnerable in the social pecking order than them. Imagine the tears, the frustrations, you have tried your absolute best to help guide them through, as they encounter situation after situation where they are told they are different, where they are made to feel unwelcome, where they don't feel like they belong.
Imagine watching them struggling to express their feelings to you, wondering why they don't have friends. Imagine watching them slowly recede into isolation, spending time only with you, or by themselves. Imagine wondering - will they ever experience a romantic kiss? Will they ever know love aside from you? Imagine your heart breaking as you realize the thing you want to provide to them most - a sense of community, the joys of companionship - is beyond your ability to build by yourself.
Imagine the terror that keeps you up on some nights, as you consider what life might be like for them once you are dead. Once the one person who knows them, their champion, is gone. Imagine the concern you feel, not knowing how they will fend for themselves.
The vast majority of connections your loved one has developed inside the medical system over the years have been largely transactional, with no real depth of relationship with any of their health care providers. Sure, they know your child's name, and can tell you up and down about their condition, but that's about all they know. Imagine everyone telling your son or daughter what they can't do, what they won't be, and informing them what their very limited options are.
For so many families, this is not imagination. This is heart-wrenching reality.
Now, imagine a person who comes and visits with your child weekly. Who forms a relationship with them. Who gets to know them, as an individual, not just as a collection of conditions. A person who is geared towards helping your child realize the skills and talents that they do have, that they can use to create meaning and happiness in their life. A person who will work to help build friendships and community up around your child; a network of care that will persist well into the future after you are gone. A person who walks beside your loved one, helping them find their own voice, to be able to make their own choices. A person who listens, and helps them feel understood. A person who can help bear the burden and can offer you a break. A person who, beyond the health of your child, cares about their empowerment.
Finding a job, joining a club, volunteering - these are all outwards signs of the real change that is happening; the creation of social networks and instances where the individuals can use their talents to give back and feel valued. To feel like they belong.
Independent Facilitation also eases many downstream systemic burdens - on the health care system, housing, missed work for parents. The increased quality of life resulting from reduced family stress, as well as the self-directed aspect of helping people find their voices to make their own choices, is hard to overstate.
One of the biggest benefits of Independent Facilitation, above and beyond what is provided through the existing institutional approach, is the impact it has on depression and loneliness. Studies, focused on greater society, have correlated depression and isolation with negative health outcomes – which means more economic burden. In a community that is arguably the most isolated, many people for the first time had someone to walk with them and help guide them through how to structure a meaningful, connected life.
It is very human to want to feel useful, to have purpose. Independent Facilitation helps individuals who otherwise would have been overlooked to determine theirs, structure the necessary steps needed to achieve it and empower them to actually move themselves forward.
This is prime space for Ontario, and Canada, to exhibit leadership; how we treat our most vulnerable populations says more about our culture, province and country than any number of political slogans ever could. It is a crying shame to see our provincial leaders effectively turning Ontario's back on a significant portion of our own. Honestly, I can't help but feel that if Doug Ford had a family member with a developmental disability, he would get it. He would be Independent Facilitation's biggest champion instead of being the guy who is about to drop the axe on the service.