N.S. disability advocate troubled by uncertainty around closure of large institutions

In September, Tracey Taweel, Nova Scotia's deputy minister of the Department of Community Services, said the province could not give a timeline for phasing out large institutional housing for people with disabilities.

The announcement was made despite a ruling by the Nova Scotia Court of Appeal in Oct. 2021 that the province's failure to offer "meaningful" access to housing services for people with disabilities amounted to a violation of their basic rights.

Dana Mills is an author and an advocate for the closure of institutions for disabled people in the province.

Mills is the older brother of Ryan Mills. Their mother is spearheading a community housing initiative being built in Kentville. 

Seeing what his brother experienced and having a son with autism, Mills told CBC Radio's Mainstreet Nova Scotia host Jeff Douglas the province's announcement terrified him.

In an emailed response from the Kings Regional Rehabilitation Centre, a spokesperson said there have been many changes in the sector over the last 30 years.

The emphasis now is on "community living, choice, and independence," the spokesperson said. The email said as the province acquires more community homes people will be moved out of facilities and into small-option homes. 

The discussion has been edited for length and clarity.

This is not something that you have spoken about before. Why do you feel it's so important that you have to talk about this now?

I think it first starts through seeing sort of the trajectory of my brother's life. He had to leave our home when he was 11 and start into this, sort of, being supported outside the home and then slowly going into a sort of institutionalized group-home setting. And then just seeing the trajectory of his life and how, really in some ways, tragic my brother's life has been.

Looking at how my brother's life unfolded, and with my son's ASD [autism spectrum disorder] diagnosis, what sort of future is he going to have living in this country, this province, and really what has changed? And then being here 35 to 40 years later and just kind of evaluating, like, what has changed and what hasn't, and feeling a really deep need in myself to say this is what I want for my son and this is what I don't want. And there are a lot of things that I don't want.

It sounds like a lot of things that you fear are based on what you saw with Ryan?

I very much do. Seeing Ryan slip into this system that really did not serve him well whatsoever and realizing there wasn't really a lot of choice involved there. I think every family that has a person with an intellectual disability sort of fears these crises because they look around and they see there is no safety net anywhere. It's just this reactionary mess, you know. 

If we can go back Dana and maybe talk about when Ryan ended up going to live in the institution that he ended up at. How old you were and what you remember about that time and how you felt at that time when he went? You said he was around 11?

He's a very likable guy. He was diagnosed with ASD, but he has always been nonverbal, through his childhood and grew up in a really stable household. My parents bought this old farm property in Woodville, behind Cambridge, Coldbrook, 15 acres, and dad would take him around on his motorbike. In the winter we had the sled that I would pull him around on the ice patches in the fields.

Any way we could make this life just good for Ryan I think we tried it and we succeeded a lot I think — both parents very loving at home is just like this was our normal life.

But what happened was my parents' marriage didn't succeed and my dad left. It left Ryan very confused and he started to become distressed at night.

He was in those group homes after a while and from there, when he was 18, I know one of the places closed for a bit with mould and Ryan had to go into the rehab for a while. I just remember switching group homes and the people like the support workers always changing, of course, and the clients always changing and just sort of this chaotic world there.

I think when the trouble really started happening was into his 20s and especially 30s. That's when Ryan's mental health started to decline. We don't talk a lot about mental health and people with intellectual disabilities but it was a mental health decline I think, and physical.

So Dana, a month ago yesterday, on Sept. 6, the province said that it has no exact timeline for when institutions will close. When you hear that, what goes through your mind?

My first reaction is sort of this shot of terror through my gut because this is just every parent's worst nightmare. Switching hats here from the brother to a father, I now understand the sort of strife and the terror that my mom has gone through trying to find any kind of support that's not just like this institutionalization.

I just think, like at certain points in our advocacy, it gets very muddled. At certain points our family just sat down and we're, like, the epiphany is, that as long as you have institutions, it's almost like this the only option.

That's the only option that government wants and I don't even know why. I don't know if it's just that in-built suspicion around disability. Like a certain culture in the province. I can never get my head around why.

Why do other provinces in other jurisdictions, why can they do it? Why can other countries do it better than Canada? Why can Canada as a whole do a lot better than Nova Scotia? What is it about this place?

The culture is just maybe that institutionalization has continued far too long where it's just like it's better and more convenient to have centralized care. 

What impact do you think this history of institutionalization has had on how we as Nova Scotians view those who are living with intellectual disabilities?

I think that's a huge problem. They're very similar to any sort of other institutions that just tuck people away. As long as you isolate and take these people away from society, then you have no tools to actually deal with people with intellectual disabilities on an everyday basis. 

When you say you mean we as individuals because we don't see them, we don't interact?

That's right. And then I start to see how that hurts my son.

Most times people are pretty good, but if I have some kind of interaction with other parents and neurotypical children, I don't think there's any ill will, but there's just this sort of awkward disconnect there.

I think that it does stem from the fact that you just put these people over there because they weren't people. I think the road back to them being people is going to be a lot bumpier if we have institutions open. It's just not going to work.