Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697637921457.pdf (Australia)
Submission to the Senate Community Affairs Committee on the: “Adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities in Australia” By: Daniel Lee Black With assistance from Penny Paul Information and Connections Coordinator Summer Foundation 991 Whitehorse Road Box Hill Victoria 3128 Signed Daniel Black Penny Paul Adequacy of existing residential care arrangements available for young people with severe physical, mental orintellectual disabilities in AustraliaSubmission 21 2 Table of contents Introduction ............................................................................................................. 2 My schooling ........................................................................................................... 3 My housing .............................................................................................................. 3 Pathway into RAC ................................................................................................... 3 The appropriateness of residential aged care for young people with complex disability .................................................................................................................. 3 Bullying .................................................................................................................... 4 The need for an individualised approach to care .................................................... 5 Exercise ................................................................................................................... 5 Access to therapy in RAC ....................................................................................... 6 Financial impact of residing in RAC ........................................................................ 6 Pain management ................................................................................................... 6 Leisure ..................................................................................................................... 7 What needs to be done?
......................................................................................... 7 My ideal living situation: .......................................................................................... 7 Introduction Hello Distinguished members of the committee, my name is Daniel, I’m 51 years’ old and I live in an aged care facility.

I’ve been living here for 2 years and 5 months.


The reason why I’m in this facility is two fold: my declining health and because the Cerebral Palsy (CP) is getting worse.

I have CP because during a home birth the umbilical cord got stuck around my neck and I had no access to oxygen for 3.5 seconds.

This damaged my cerebellum, which controls all my muscle functions.

It affects my bowel, bladder and lower limbs; it’s an effort for me to speak because I have spasms in my throat.
I’ve got three types of CP: I’ve got the stiffness type which means that sometimes I’m like a piece of granite, it mainly effects my hips and legs; the floppy type, which means that sometimes I’m like a puppet with no strings; and, I also have the progressive type, which means that I get weakness in all my extremities and eventually I will end up bed bound.

Every so often I have acute attacks and after each attack I recover but never to where I was before.
My condition changes from day to day and month to month.

I call it the triple whammy.

At 51 years of age I’m the youngest resident in this building, the oldest resident is 101 and the majority of residents are in their 90s so you tell me where the mental stimulation is.

I have made a lot of friends here but they pass away too quickly, so I have made a resolution not to get attached to people because it’s too hard.
2 Adequacy of existing residential care arrangements available for young people with severe physical, mental orintellectual disabilities in AustraliaSubmission 21 3 My schooling I did my schooling at Yooralla Special School, and had trouble with reading writing and maths.

Later on in life I found that I have dyslexia.

I say to people I don’t care about CP it’s having Dyslexia that is my biggest disability.

Yooralla didn’t pick up my dyslexia because they assumed that I had an intellectual disability.
So I was very board at school.

When I left school at 17 they said I hade achieved a grade 4 education.

I have since completed year 11 at TAFE.

My initial ambition was to become a priest, but I was knocked back.

I was then interested in becoming a hospital translator (I speak fluent Greek) and have a lot of experience after years of translating for my mother.
Most recently I wanted to become an advisor at Royal Talbot to help people with an ABI adjust to post injury life, but was not allowed, as I was a patient there.

My housing Prior to entering residential aged care (RAC), I lived with my wife.

For 28 years we managed to run a household, we weren't able to have children, we had a family of four cats which I still call ‘my boys’ they were happy years.

I felt the best during the last eight years; I had an Individual Support Package (ISP) of $37,000.
which provided for assistance in the home with showering and meal preparation.

Pathway into RAC I was admitted to hospital because, as a consequence of the weakness in my arms and hands, I was falling out of bed.

I was in the Austin for 5 weeks doing tests; they couldn’t find anything and put it down to my CP.

I was then sent to Royal Talbot; it was my fifth admission there, this time I was there for nine and a half months because I was going through a divorce and didn’t have a place to live.
I was hoping to get into shared supported accommodation (SSA) run by Yooralla.

But it wasn’t suitable, the room they offered me felt like a prison cell and I couldn’t work the shower.

Eventually I was admitted to an aged ward at the Repatriation Hospital, it was very sad because a lot of residents had dementia, and we were put to bed at 7.30pm when the place closed down for the day.
The appropriateness of residential aged care for young people with complex disability The social worker there assisted me to look at seven different RACs, before I chose this one.

At the time two brothers ran it, and the manager was the most beautiful person I have ever met.

But the facility changed hands recently, a big conglomerate bought it out, and they have really standardised their approach.
They’ve had seven managers in the short time that I’ve been here 3 Adequacy of existing residential care arrangements available for young people with severe physical, mental orintellectual disabilities in AustraliaSubmission 21 4 and I feel I have to retrain each one.

Some are willing to listen and others go by what head office says.

Their sole reason for being here is to meet accreditation so that this place does not close down.
Many of the best staff are leaving or have left because they have cut peoples hours.

According to the facilities website they have two Registered Nurses (RNs) on all of the time to meet the needs of residents with high care needs.

But most of the time there is one RN and one Enrolled Nurse (EN).

This facility has 45 residents in three sections; at the moment there are two staff members to every section and one floater.
There is: an RN and Enrolled Nurse (EN); three staff members in the office; the facility manager or DOM; the clinical Coordinator; and, the leisure person.

The leisure person looks after leisure activities for residents who have dementia.

However there are also people here who have multiple sclerosis (MS), cerebral palsy and stroke and so who don’t get access to leisure activities.
The staff here try their hardest to meet everyone’s needs, but this facility is grossly understaffed to meet the needs of the residents.

A lack of one-on-one support causes falls, I know of three people who have died prematurely as a result.

If I told you what goes on here you would close it down, but I don’t want it closed down because it would hurt a lot of people.

I want the people doing the wrong thing held responsible.

The aged care department needs to be more vigilant.
Bullying There are only about three Australian born staff here, most of the staff don’t speak English well.

There needs to be a diversity of the background of staff as once one ethnic group becomes dominant a clicki club forms and there is a lot of bullying.

There is bullying between staff based on workers ethnicity, and bullying of residents by staff.
I have witnessed a lot of bullying: verbal aggression, demeaning behaviour, the failure to respect people’s privacy, particularly the privacy of women using the assisted toilet.

For example I have witnessed a staff member call another ‘a raghead’ in reference to her headdress.

The worst of it was that one staff member hit another staff member in the vicinity of the Manager, and the Manager laughed it off!

The person who was hit was the one ostracised.


When I questioned the Manager about her inaction she made out like I was imagining it.

Head office has since moved her to another facility but she should have been sacked.

They are losing good staff members because of their inaction on bullying.

The staff member who does most of the bullying in this facility bullied me.

I had a fall in the assisted toilet, the RN at the time saw me fall and asked the worker to assist me.
I told her that 4 Adequacy of existing residential care arrangements available for young people with severe physical, mental orintellectual disabilities in AustraliaSubmission 21 5 I need her to lift the chair out of the way.

She said it was ‘too heavy’ (it weights 16.5 kgs) and ran it over my legs.

The RN and I both made a formal complaint to the Manager but nothing was done.

It was swept under the carpet like it normally is.


This incident made me feel bad for the staff members employed here as well as for myself.

In the beginning I was able to counsel staff about things that were happening to them and act as a sounding board for them, but management found out about this and put a stop to staff coming to see me.

This ban makes me feel very uncomfortable because they have taken away all my mental stimulation and I don’t have much in here.
The need for an individualised approach to care Furniture needs to be suited to individual residents – not one size fits all.

They have princess chairs and have four to six elderly people in those chairs at the moment and they look very uncomfortable.

They need to be mindful that residents have thin skin and are subject to pressure sores.

People should be able to bring in their own beds and equipment; the beds and equipment need to be fitted to individual residents.
I fought to be able to bring my own hospital bed from home, but was required to sign a disclaimer.

It took my occupational therapist (OT) multiple meetings with the manager to get me the toilet that my OT recommended –the toilet is a little bit bigger.

I’m bigger than the average resident, who are very frail elderly women.

I’m 5’2 and a half and weigh around 83.2 kgs.

I’m 25 kgs overweight; I’ve gained 15 kgs while I’ve been here, because there is no place to exercise.
Exercise I have asked for exercise equipment to be brought in; a bike for a person in a wheelchair and my punching bag from home, both requests were turned down because there was concern that the noise and the actual equipment would scare other residents.

Prior to my hospital admission I trained 35 minutes a day either a cardio workout: punching the punching bag, speedball, martial arts and weight training.

Or, lifting 5kg hand weights and various exercises’ to keep my upper body strong.
I need my upper body to transfer from my chair to bed and from my chair to toilet.

My condition is declining due to lack of exercise and 5 Adequacy of existing residential care arrangements available for young people with severe physical, mental orintellectual disabilities in AustraliaSubmission 21 6 I’ve had a few falls.

I’m still recovering from torn and stretched ligaments in my good arm, which have not healed properly in 12 weeks.
Access to therapy in RAC Since my admission to residential aged care my ISP has been cut to $25,000 and they want to cut it to $6,000.

I’m fighting this really hard.

I spend my $25,000.

on music therapy, massage therapy and for to carers come in to put my clothes away and take me out when my budget allows.

Financial impact of residing in RAC I pay 85% of my pension to the aged care facility.

I’m not eligible for rent assistance because I live in a nursing home.

I’m left with $50.
I’m left with $50.

per week for chemist bills including putting my medications in Webster packs, which is required by the facility.

I have three Webster Packs made up each week and at a cost of $17 dollars just for the pack, the medication is an additional cost, so that's $51.00 per week gone already.

I’m living in the red, I pay $45.00 per week on cigarettes, about $20.00 per week for my phone.

I owe the chemist money, I owe the facility money and I owe Telstra money, it’s really stressful.
Occasionally I buy a Tatts ticket on the off chance that I’ll win and get a little bit ahead.

Pain management Cigarettes are the only thing that keeps me sane at the moment.

People with a disability need to have something to live for and for most of the people I know with a disability are smokers.

I use cigarettes as a mental form of pain relief, they help me with stress.

Please cut tobacco excise.

I have a lot of days when I get a lot of spasms in my body and up and down my spine.
The only thing that relieves the spasms is Valium (which is very addictive) and smokes.

Please legalise medical marijuana as soon as possible to assist with pain relief for people with disabilities and chronic pain because there are a lot of us out here.

My doctor says that if they legalise marijuana, I will be first one on it.
Other things that would assist my pain management are, discounted concert and movie tickets as these are activities I can’t do at the moment because of the rent I pay here – going to the movies gives me time out and distracts me from my pain.

Escape!
Escape!

6 Adequacy of existing residential care arrangements available for young people with severe physical, mental orintellectual disabilities in AustraliaSubmission 21 7 Leisure I have access to a library service once a month; a person from the library brings me some talking books.

I also have some music therapy from ABLE Australia once a fortnight, which consists of the music therapist acing as my hands, I’m a frustrated guitarist – I understand the chord structure, and I write music.
What needs to be done?

Both aged care and special needs units - housing for people with disability, need to fall under one umbrella, the Federal Government.

All power should be taken away from the States as the Federal Government has access to more resources.

By my reckoning, State Governments fidget the books; their only concern is wining the next election.
My ideal living situation: I would like to live in a flat owned by the Housing Commission, on my own with support people coming in to help me prepare meals, shower and to get dressed.

The Government needs to look at each case individually, where people can cope with individual living arrangements, the Government needs to give them a flat owned by the Housing Commission.

Those that can’t, i.e.

those that need to live with their parents, there should be additional services supplied to support family life.
For those who can’t cope with either of these situations, there should be the option of group housing for people who choose to live together.

7 Adequacy of existing residential care arrangements available for young people with severe physical, mental orintellectual disabilities in AustraliaSubmission 21