I have ability as well as disability and want both aspects of me to be taken into account

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.

Because I have a cognitive disability, as well as being old, I have even greater difficulty negotiating the In-Home Care package. Because I have ADHD, my mind is always racing, and I find it hard to stay focused on what is being said. This presents a huge problem when trying to find a suitable service provider.

I was diagnosed with ADHD when I was 70 and 10 years before with a high-functioning form of autism called Aspergers Syndrome. Because my mind is all over the place, I often forget to eat. Most days I skip breakfast and lunch because I am living in my head and working on my computer. But this is not good because I have diabetes 2 and should be eating regular meals throughout the day.

So what I wanted from my first service provider that I was with for the last 18 months was to help me with meal planning and preparation of healthy snacks. This does not sound very hard to me, for someone who is organised, but it proved to be an impossible task for each of the four carers sent to me.

So too was assisting me with housework. I had to pay extra for that. I have now left that provider and am looking for a new one. I am not up to self-managing my own package so I need to find a provider and this is proving to be a challenge. I have ability as well as disability and want both aspects of me to be taken into account, not just the latter.

Having someone to help me organise my life would be so helpful. It would stave off the anxiety and overwhelm I feel all the time which probably plays havoc with my high blood pressure.

Pamela Mawbey

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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2 thoughts on “I have ability as well as disability and want both aspects of me to be taken into account”

  1. This is where your case manager needs to step up and be aware of your requirements and follow up with you to make sure your needs are being met. You are paying a percentage of your package in case management and administration fees yet most people like yourself are left on your own to try and sort things out with untrained/ disinterested/unable to speak English carers.
    Not sure why it is so hard for case managers to visit or call their clients once in a while.

  2. Simple Requests can’t seem to be done by agencies because
    1. They don’t have competent staff across the board, in meal prep or general housekeeping.
    2. The turnover of staff prevent keeping the show on the road in that organisation falls apart and you are left retraining the next person and the next.
    3. The Providers themselves seem disinterested in understanding your needs and just fill a roster with anyone.
    4. The Providers never check on you to know if the worker is capable of seeing to your needs.
    5. Providers I keep saying, have has much talent as an old fashioned dating agency. It’s just roster making stuff. Yes there are some good ones out there but how do we find them.

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