Letter to the Editor: Increase awareness of the benefits of Independent Facilitation

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People with developmental disabilities and their families are just learning their life-line to inclusion will 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. Imagine the tears, the frustrations, as they are told they are different, made to feel unwelcome, and like they don’t belong.

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 things you want to provide most — a sense of community, the joys of companionship — are beyond your ability to build by yourself.

Imagine the terror that keeps you up some nights, as you consider what life might be like for them once you are dead. Once the one person who knows them best, 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 have been largely transactional. 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 visits with your child weekly, who gets to know them as an individual, not just as a collection of conditions, forming a strong relationship. A person geared towards helping your child realize the skills and talents they do have, that they can use to create meaning and happiness in their life. A person who works to help build friendships and community around your child; a network of care that will persist after you are gone. A person who walks beside your loved one, helping them find their own voice and make their own choices. A person who listens, and helps them feel understood. A person who can help bear the burden and 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 reduces pressure on the healthcare system, housing and parents’ employment. The increased quality of life resulting from reduced family stress, reduced isolation and people’s ability to make their own choices, is hard to overstate.

This is a prime opportunity 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. I can’t help but feel 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.

 

Jamie Moffat: board member of the Waterloo-based charity Bridges to Belonging

 

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