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No seriously when do people with disabilities get to retire?

Knowing that people with intellectual disabilities age faster than people without disability, I think it is a pertinent question and one that NDIS could help with.

Have a think about this scenario….

Peter is a middle-aged gentleman with a moderate intellectual disability and limited speech who has been going to the same day service for over 21 years.

Every weekday morning he gets out of bed and gets ready to go to ‘work’ because that is what he has always done, and what all of the others who live in the same supported accommodation with him do. It is his routine; his life.

But one day Peter became harder to get up in the morning. He argued with the staff about getting ready and was grumpy when he got on the bus. Very unusual for the normally affable Peter.

Pretty soon, this was a normal occurrence on the weekdays, and the staff wondered what was going on with him as they began the daily struggle. What has changed at the day service to make Peter not want to be there anymore, they wondered.

At the same time, Peter became hard to manage at ‘work’. He was argumentative when it was time to go on the daily outing; he did not want to get up from the table after lunch, and he was grumpy and arguing with the other clients regularly and refusing to participate on a regular basis.

Concerned about the change in his behaviour, Peter was sent to the doctors.After a whole lot of tests, it was decided that he was physically well, so his issues must be the result of some sort of depression. Peter was placed on an antidepressant medication.

This didn’t really help Peter, it just interfered with his sleep patterns and appetite and made him more agitated. His behaviours continued and he began to be known as a troublemaker. Staff started wondering if he had the onset of dementia and they spoke to the supervisor about having him seen by a specialise; after all, he was becoming hard work and he was no longer fitting nicely into the routine of the house….

We all know of a Peter. Someone who is between 45-65, and suddenly develops ‘behaviours’. Is it the onset of dementia? Do they have a physical illness and are trying to verbalise their discomfort? Have they just become bored with the routine? Should we mix it up a bit for them? These are the questions I have heard bandied about by support workers when a person begins to show these behaviours.

But I come at it from a different perspective…

If we know that people with disabilities, especially intellectual disabilities and Down Syndrome, age earlier and differently to those without disability why would we not look at these people as elders of our community and allow them the natural progression of retirement?

Is it not cruel and unusual to expect them to continue with the same routine that they were doing when in their twenties and thirties, now that their bodies are slowing down and screaming for a rest?

Obviously, this doesn’t necessarily apply to all people with these disabilities. Some are lucky enough to remain sprightly up until their last days; but for those who are slowing down, let’s show that the full respect it deserves.

How does someone with an intellectual disability who doesn’t work ‘retire’?

Funding arrangements pre-NDIS meant that people had fewer choices around the way their days were structured.

Block funding allowed for support staff to be available in day services from 8.30 am and 5 pm and in supported accommodation between 4.30pm and 9 am. This covered the full 24 hour period, but it also meant that the person needed to be at the day service during the covered hours and at home for the remaining hours of the day.

With NDIS funding and a lot more flexible support solutions becoming available it would be possible for Peter to go to a group activity in the morning and come home to relax in the afternoon. Or go to group 3 days a week and stay home for the other 2.

It would even be possible for Peter to invite people into his home for a movie session one afternoon, where they can have a lovely afternoon tea and chill together. Peter’s life could be much more flexible and less structured giving him the chance to wind down slowly…and finally ‘retire’.

As a support coordinator, I think it is imperative to take this into account when assisting people like Peter with pre-planning or  plan review preparation. It is important to consider what retirement could look like for people with disability who are ageing and begin to build in the supports that will be needed to allow them the natural progression that we all deserve.


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