When permanent residential care becomes institutionalised detention because its all about who pays

We invited members of our community to share their experiences and perspectives of aged care services. Disclaimer: These stories have not been independently verified. They do not necessarily represent the opinion of Aged Care Reform Now and are shared for information purposes only.

This is the “pointy end” where interaction with community ends for many … not only for people living with dementia but for many people living with disability. This is where people risk losing their human rights when entering permanent residential care, i.e. institutionalisation.

It’s all about inadequate housing options and interruptions of ongoing interactions with the wider community.

Some of V*******’s co-residents are not from this region.  Many don’t get visitors, ever. 

For V******* though, this is her “chosen country”, the community where she’s been living for 17 years, though not where she was born.  Despite being a “gypsy” for decades this is where she chose to live and where she expected to end her days

Why is it so difficult to organize transport as a person’s needs change?  Because it’s all about who pays for it, under which program..

I now can’t take V******* out because there’s not a second person to support me for transfers in/out of the wheelchair/car  (WorkCover for staff doesn’t apply to the carpark). 

To get residents out anywhere, e.g. to our local dementia choir, would mean that the RACF (Residential Aged Care Facility) would have to sub-contract to a Community/Disability transport group…and pay for it.  It is so damned hard.

Council/CHSP (Commonwealth Home Support Programme) transport services are not available to people in residential care.  It’s considered “double-dipping”.

This is how sequestration, isolation and “detention” actually work in RACFs.  I literally can’t take V******* out to any community events, nor even for a drive or picnic.

This drives me near-insane.

I couldn’t get her to recent local music events. She’s rearing to go out!  This is NOT FAIR.

If this story caused sadness or distress, please reach out for help.
Lifeline: 13 11 14 or lifeline.org.au
Beyond Blue: 1300 22 4636 or beyondblue.org.au
Headspace: 1800 650 890 or headspace.org.au

Do you need to lodge a complaint? We have information on which government agency to contact, and how to explore legal support here: https://agedcarereformnow.com.au/resolving-complaints/where-to-make-an-aged-care-complaint/

Do you need support? OPAN provides free services to support older people and their representatives address issues related to Commonwealth-funded aged care services and informs people of their rights and responsibilities: 1800 700 600 or opan.com.au

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1 thought on “When permanent residential care becomes institutionalised detention because its all about who pays”

  1. Firstly, I am so sorry this is happening to you and V.

    The story reminds me of my family’s experience at dad’s residential aged care home.

    I used to take his room mate for a walk most Sundays. Dad’s roommate was in a wheelchair and we would go around the block together to get some sun and smell the jasmin when his wife or daughter weren’t with him and when my dad was asleep.

    It was fun, and even though dad’s room mate was non-verbal we got along … I don’t know if that makes sense to anyone reading but we had this connection and just clicked. I understood him and I could usually guess what he was asking for.

    His wife was lovely and appreciated my time with her husband. My mum too would do the same for him when she could – and his family would help my dad. We all just helped each other in whatever way especially when someone wasn’t there with their loved one. (Both were families that visited every day for as long as possible).

    Then the facility had to stop our walks because of risk and liability I guess. It was handled without fan fair, no drama, and with no options for how we could improve on the daily situation for dad or his room mate so they could get out.

    It was so sad.

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