CN: institutionalisation

I think a lot about how group homes treat people with I/DD. I used to support Sam, who has chronic leg pain and sometimes has stress headaches. They'd tell staff that their leg hurt every day, so it was labelled a behaviour and staff were to ignore it.

This had a flow on effect. Every single time Sam is in pain of any kind, it is now written on the behaviour chart and ignored.

Stomach cramps? Behaviour.
Headache? Behaviour.
All Sam's pain is behaviour. None of their pain is real to staff.

Sam has PRN paracetamol. I was the only staff who would ever administer it. Sam would go months without the most basic pain relief. I would have to argue with staff to give it.

"It's just a behaviour!"

I brought it up with my supervisor. Again, it was just a behaviour

Sam lives in a group home in the community. They are getting what the average person would consider "good" care. At Christmas time staff put a tree up. There are family photos on the walls. Always music playing in the front room. The house is very clean.

None of the neighbours ever speak to Sam. Sam is not allowed to have pain relief because it's inconvenient to staff. People come into Sam's house and rarely knock or announce themselves. Because it's not really Sam's house, it's a workplace.

Sam likes to have afternoon naps. But if they nap, they might not sleep through the night. And there's only one staff to five residents at night. So staff can't afford for anyone to not sleep through the night.

Sam rarely naps.

Sam loves coffee. A good cup of coffee is one of Sam's biggest pleasures in life. Whenever you ask them what they'd like to drink, Sam will always ask for coffee.

Sam gets coffee (decaf) about 1 in every 10 requests. Staff make coffee when they feel like it.

Sam is just like a lot of people. Loves coffee, a good afternoon nap on a summer's day, and needs to take the day off when their chronic pain flares up. This is all very reasonable. But Sam doesn't get these things on their terms. Sometimes Sam doesn't get them at all.

Sam lives a normal institutional life.

#AbolishInstitutions #EndCongregateCare
#Disability #DisabilityRights