(Disclaimer: I am a member of the Premier’s Council on the Status of Persons With Disabilities. I was also a member of the Persons with Developmental Disabilities Safety Standards Regulation Consultation Team)
My wife asked me a few months ago to join her in watching the television series, This Is Us.
Something, it seemed, always got in the way of me doing so – until a few weeks ago.
Now, I’m hooked. It’s the story of a family: each character has with different challenges, issues, needs wants and desires. The show’s foundation is for everyone to – take a breath – be accepted who they are, and help each other as we, collectively, stumble through our journey.
To feel safe.
To feel loved.
To be heard.
To be included.
Which brings us to Friday morning. Community and Social Services Minister Irfan Sabir announced the Persons with Developmental Disabilities program – which provides support to 12,000 Albertans and is growing by 700 a year – is getting a full review. The province’s investment into PDD is $853 million, and even with an added $55 million recently, 376 people were on the waiting list in December.
The review was the number one recommendation from the safety standards committee.
The group, chaired by Dr. John te Linde, had seven other community members: Ann Nichol, Bruce Uditsky, MLA Marie Renaud, Mike Cooper, Tammy Poirier, Jennefir Stewart and myself. (I was asked to be part of the committee through my involvement with the Premier’s Council.)
We first met as strangers, on a bitterly cold day in December 2015, and quickly became a tight-knit group of friends with collective compassion to help.
The issue was complex. We were brought together to review the safety standards of residences with two or more people with developmental disabilities.
The issue was the Safety Standards Regulation, particularly Section 8, which became legislation April 1, 2015. Under Section 8, residences for people with developmental disabilities had to comply with numerous regulations which govern public facilities, such as industrial sprinkler systems and exit signs above the doors.
The response to the changes was loud and clear on several levels. Families with members in the PDD program faced huge expenses – tens of thousands of dollars – to retrofit homes.
There was also the social stigma, that, by and large, mini-institutions would be created in the community, erasing the idea of community living with one tap of the delete button.
We travelled throughout the province and held consultations. More than 2,000 Albertans had a say in the safety standards.
But, we heard more. And, some of them – especially from parents and sibling – were heart-breaking and, frankly, hard to hear.
It was acutely obvious the PDD program had some challenges and needed to be seriously scrutinized.
First things first, though. A few months into the review, and after submitting a preliminary report to Sabir, he repealed Section 8 of the Safety Standards Regulation, so people getting PDD services could stay in their own homes without commercial standards.
In our final report, the number one recommendation was for a full PDD review.
Albertans are now getting that. The review means people with developmental disabilities and their families will be consulted and listened to in charting a new course.
It also has the wonderful potential of setting a template for Albertans with other disabilities: not so much in potentially improved programs … but, simply, be being head and responded to.
Can’t you hear the new slogan of Albertans? This is us.