Tuesday 19 May 2020

Closing residential institutions for people with disabilities

and providing them with housing "in the community" was supposed to provide them with dignity and companionship.  
It hasn't. 
Questions are now being asked about the death of the woman I mentioned a couple of days ago. It is being treated as a case of manslaughter at present.
One of the people involved in the investigation is a person who once told me, "If you can't communicate, you can't complain."  At the time he said he seemed happy with that state of affairs. It made people "easier to care for" according to him. I was furious then and I am furious now.
Having the ability to communicate, however limited, is a basic human right. 
I know people whose only means of communication is to look up and look down. They look up for "yes" and down for "no". Having any sort of conversation with them is difficult, very difficult. It requires a lot of time and work on the part of the other person. Time is one thing most carers don't have. Work is something all too many of them are not prepared to do.
Years ago I taught a child who would splutter and try to turn his head away from the "orange juice" each child was given at lunch time. The "orange juice" was artificial but held to be beneficial because it had a vitamin C component. The teacher aide whose job it was to feed him would get annoyed with him.
   "He's like that with the chicken on Fridays too," she told me not long after I arrived.
   "Perhaps he doesn't like it," I told her.
She looked at me as if I was completely stupid.
I asked the child concerned, "P, do you like that orange juice?" 
He looked down immediately.  
    "Right, I am not very good at this but if I get you some water will you drink it?"
He drank water without too many problems - even though we were both giggling at the way I managed to spill some of it.
    "And the chicken on Friday?"
No, he didn't like that either. After that he was just given vegetables on that day and we had no problems. He wasn't being fussy. In his own home Friday was a fish only day.
All it took was a couple of questions and people being aware of his preferences. The school was small enough that everyone could know about those things.
In the community care though is a different thing. The "carers" who come and go can be there for a day, a week, a month, a year. The time they are there though tends to be shorter rather than longer. Having talked to many of them I am aware that it is "just a job". It is not something most of them have chosen to do. The pay is lousy and the work, if they do it properly, is hard.
I have been in far too many "group houses" where there has been dirty washing lying around and the kitchen is a mess. The main source of entertainment has been a television set in the living area. It gets turned on in the morning and turned off at night. People who cannot care for themselves in anyway get dumped in front of it.
All this "care" is supposed to be externally monitored. It rarely is because there is nobody to do that either. Residents rarely dare to complain for fear of retribution.
Many residents are isolated from the community. They have little or no contact with family or friends. Their ability to communicate is often extremely limited. They don't know their rights - and their carers are not about to tell them.
All this was supposed to be "better" than institutional care. There were grandiose ideas that group housing would bring about more contact with the community. In too many instances it has brought about less. When people like me do try there are endless excuses about why we can't visit or, if we do, why things are in a mess.
   "At least we have each other," one resident told me once. I thought of that when I read about the woman whose death is  now being investigated. She had nobody else.

1 comment:

Astrid said...

Wow, this is unfortunately so relatable! I was at one point all for deinstitutionalization, but it is being used as a means of cutting budgets, while in truth in the community most residents need more care than in institutions, not less.