• Peta

"We would rather die than live in a nursing home"

Did you know young people with disabilities are living in nursing homes?

The podcast recently received an email from Peter in his email he commented how "he would rather die than live in a nursing home". That comment struck me and I wanted to explore this more.

I hope you enjoy it.

You can ask Peta a question via:

The website: www.icantstandpodcast.com

Email: icantstandpodcast@gmail.com

You can follow Peta on Instagram @petahooke


References for this episode:

Young people with disabilities are trapped in nursing homes

Younger people in residential aged care

The Aged Care Royal Commission wants younger people out of aged care but what are their accommodation options?






Episode Transcript:

Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast, the podcast answering your questions about what it's like when you live with a disability. My name is Peta and every week I'm your host. I have cerebral palsy and I love to answer your questions. If you have a question you'd like to ask me for the podcast, there are three ways you can do so. One. You can follow me on Instagram. My handle is @petahooke, which is spelt p e t a h oo k e. You can send me an email which is icantstandpodcast@gmail.com. Or you can contact me through my website, which is icantstandpodcast.com. OK. Without any further ado, let's get into it.


[00:01:11] This week's question came from Peter. No, not me. I promise. You might remember that a few weeks ago, Peter also asked me a question. In his email alongside the original question was his statement that he would rather die than go into a nursing home. while that wasn't a question that he asked, it really struck me. That sort of language, because it rings true to me, too. I would also rather die than go into a nursing home. And I thought it would be an interesting topic to speak into.


[00:01:57] So before jumping a mic today, I mean, trying to articulate in my own head why I also feel this way. Why the two 'Peta/Peters' would rather die than go to a nursing home. Intellectually, I know I would be OK. My grandma, for example, lives in a lovely nursing home. It's more like independent living. She has her own apartment, there's a cafe and there's a swimming pool and there's a hairdresser. So, you know, really in some ways, my life would be pretty awesome if I lived in an apartment with its own pool, with a hoist, with support workers there to help me every day. But. Still, my gut knows that I don't belong in a nursing home. And I think I finally understand why. And it's probably not the most politically correct reason, but it's true for me. And that is it would be really hard to not only be the odd one out because of your disability, but also be the odd one out because of your age. To be the only young person in a nursing home must be extremely difficult and isolating. It would be hard to be surrounded by people who aren't your own age, but also have lived their life and are happy with how they life turned out. When you're at the opposite end of the life spectrum, your life's just getting started or you're in the middle of life trying to maintain momentum and get things going. Pushing along. And it also must be said it would be really difficult to be constantly reminded the perils of the ageing. To be constantly faced with that would be really confronting. Also, implicitly, to me, it would sort of mark that my life was sort of over.


[00:04:13] You know, 6000 young people with disabilities in Australia today are sitting in nursing homes. That's far, far too many. Not only that, nursing homes can be chronically understaffed and disability needs can be different to aged care needs. So, the staff might not have the capacity or the skill to feel what the disabled person needs to live their life. Young people with disabilities need complex clinical care, allied health and rehabilitation services that nursing homes are not equipped to support, and nor should they. Frankly, that's not what they're there for. Across Australia, 2500 young people now going to nursing homes each year. That's an average of 50 per week. So 50 people last week were placed in a nursing home, 50 people this week. These are very weak and 50 people next week.


[00:05:33] So why are young people being placed in nursing homes? Because the kind of integrated health and disability support that these people require simply do not exist in their current community. Let alone often in their local area, think about what it's like to live in a rural setting. How many disability support organisations are there in rural outback Australia? And I can understand why families don't want their disabled family members to move far away from them. And not only that. It's not like these disability accommodations are just there, quickly for someone to move into or they are, I would imagine that to be quite rare. So when a patient leaves hospital, where do they go? Their home isn't equipped, their family might be unable to look after them, and there's no disability accommodation at such short notice. It must be said, one of the main other reasons why people go into aged care is because of the ongoing pressure on our hospital health system. Once the person with a disability is no longer deemed unwell, that bed that that person with a disability is using is needed by another person who is unwell and requires hospitalisation. So there is a consistent pressure and need to discharge patients as soon as they're able to, given this pressure. There has been a reliance on admitting people to aged care.


[00:07:31] So what do we do about this? Well, in March 2019, the federal government announced. That it developed a national action plan that aimed to reduce the number of young people living in aged care to give them access to more appropriate aged housing and supported living options. The Department of Social Services and the National Disability Insurance Scheme, a.k.a. NDIS, are managing this action plan. I listened to an interview with Dr Di Winkler, the CEO of the Summer Foundation, which is a specialist disability accommodation provider. She said. Australia needs to provide an additional 19000 accommodation options just to fulfil the need. This includes improving current old stock that requires updating. Along with completely new sites to accommodate this need and to ensure that young people with disabilities no longer move into aged care. I'm really pleased to say for once that we're moving forward positively, in concrete direct steps because of the aged care royal commission. When the Aged Care Royal Commission released their interim report in late 2019, there has been a marked improvement in the number of young people with disabilities in aged care. The earlier number I quoted to you being 6000 was before the royal commission. Now, today, as of May 2021, current statistics have suggested that that number is reduced to 2000 people. This is extremely encouraging. Because everyone deserves to live to fulfil their life. Since young people with disabilities have been put in specialist accommodation. There have been reports of increased independence, very often improving on their skills and abilities. Some people have reported an improvement on their ability to talk. That's how important disability accommodation is to people with disabilities. It's fantastic to say that people with disabilities are now receiving the sort of care, respect and value that they deserve.


[00:10:25] I hope you enjoyed this week's episode. If you did, can I encourage you to leave a rating and review if you listen on Apple podcasts? It all helps more people discover the podcast and to be honest, I really love reading your feedback. It's part of the reason why I love what I do. I do this for you guys, after all, or if writing and reviewing isn't quite you following me on Instagram or share the podcast with a friend. It all helps, and I truly appreciate you all listening. Until next week, guys have a good one. Bye.

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