Imagine having to rate how well you make and keep friends. Or being asked if you’re able to do laundry on your own. How about going to the washroom? Would you say you need a little bit of physical assistance or perhaps just a verbal cue? How frequent are your trips to the loo and how long do they usually take?
These are the types of questions people living with developmental disabilities would have to answer during their initial needs assessment by the province, but not anymore.
On Monday, the NDP government confirmed it would be scrapping the contentious evaluation system known as the Supports Intensity Scale (SIS) and replacing it with an “Alberta-made” solution.
Introduced in Alberta as part of a pilot program in 2008, SIS measures support requirements in 57 life activities and 28 behavioral and medical areas – ranking each activity according to frequency (none, at least once a month), amount (none, less than 30 minutes), and type of support (monitoring, verbal gesturing).
St. Albert resident Wendy King said the process made her son Erik very uncomfortable – he asked multiple times for the evaluator to “stop talking about me like that” before leaving the four-hour conversation – and reduced him to a number on a piece of paper.
At no point was Erik asked about his friends (he has a ton), his job (he works at McDonald’s every weekend), his goals (he’s about to graduate high school and is thinking about post-secondary), or his skills (he’s a very social person, among other things).
“They take this dynamic person, this human being, and break him down into little tiny numbers,” said King.
Not only was the process intrusive and dehumanizing, it was a waste of taxpayer dollars.
When the government rolled out SIS, all Persons with Developmental Disabilities (PDD) clients were asked to undergo the process, even if they were already receiving supports.
St. Albert MLA and former executive director of LoSeCa Marie Renaud said that 85 per cent of her clients’ SIS results were “grossly incorrect,” not at all resembling the needs previously determined by the service provider.
“It was expensive, it was not very accurate and it was not a good experience for people involved, so I’m thrilled that it’s gone,” said Renaud.
While King is also pleased families won’t have to go through the assessment in the future, she doesn’t want the government to stop there. She wants the information collected about her son wiped from the record.
“I think it really violates Erik’s right to privacy,” said King. “I don’t want people being able to read in depth every single intimate detail about him. I think that’s the next step, to have that information destroyed.”
Heather Richards, director for community living at Transitions, hopes the province will continue its trend towards collaboration and will consult people with developmental disabilities, as well as their service providers, to determine the best tool going forward.
“They probably could give the greatest insight,” said Richards.
Earlier this year the human services minister Irfan Sabir repealed the safety standards imposed by his predecessor. Though well meaning, these standards were also viewed as demeaning by PDD clients and their families.
Renaud, as part of her work on the safety standard consultation team, has requested a complete review of the PDD department.
“The safety standards and SIS are the symptom of a larger problem,” she said.
