10/04/23 1

Quality Of Life Only Happens By The Quality Of Service

By Melinda Smith

10/04/23 2

My Perspective

Welcome. 

My role is to talk to you from the perspective of someone who relies on the system for most aspects of my daily living and quality of life.

Let me paint you a picture of what my life looks like.

Let me take you on a journey of the ups and downs.

What needs to happen, for me to live my life and feel like I have that sense of Quality?

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My HomeLet me talk first about my home. I live alone in my two-bedroom unit rented property, supported by the government. It is set up reasonably well for my needs, though that has been with a constant effort on my part to push for changes when I need them. My needs are changing as I get older, and I am trying to get alterations to my bathroom, to ensure I maintain my independence as much as possible. Once again I face the process of assessments, letters and forms to ask for funding. For me, quality service means getting the equipment and modifications I need, when I need them.

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Home First

The home first package is of course my God send, I could absolutely no way, live my life without it. 34 hours every week may seem a lot, but to me it is, just enough to get me by.  I have to be on the ball every day, to make sure every hour of my support is accounted for, and used in the best way possible.

It means I have two jobs.

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My second job….

The job I am doing right now is my paid job. However managing my support hours is not.

This work is not just a nine to five job. It is a job that never stops at the end of the day, or the week. It is not just about working and communicating with my agency, to make sure I get the most appropriate people for the job.

It is also, about managing my team and what they do every day.

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Managing the Team

It is about looking after the running of my house. It is about my personal needs and making sure I am eating well, dressing how I want, caring for my environment.

My team are great, but it means I must be reminding them; they have to be reliable and responsible people. That is what quality service means to me. Otherwise my day becomes messy. I become tired and unwell.

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Things don’t work when myteam doesn’t work

Quality support means enough support. The 34 hours is pathetic sometimes. I get tired of always hurrying, always having to look at the clock.  As I become older, my body is changing and my mobility is slower, and I feel unwell more often.

Generally things are taking up more time, one example is meal times: if I eat too quickly I choke. If I skip meals and food during the day, I become more tired and weaker. Quality support means having my basic human rights acknowledged, and my needs met.

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Changing needs

I only have enough hours to support me in the morning and at evening time, and this means I have to cope during the day, as best and as, safely as I can. At the moment I am pushing for more support hours to help to support my increasing needs. It is really important to me, to keep telling people what I struggle with and where the gaps are. A quality service would recognize this and do something about it.

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The Full Picture

My independent living is important to me, and I will do what it takes to find the funding, and the support I need. Often the service providers don’t get the full picture of the day-to-day events, that impact on a person’s life.

And people like me with severe disabilities are expected to fit the system, with the maximum 34 hours, and this impacts on my quality of life. More hours of support would lessen the pressure on me and would improve the quality of service I receive.

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Employment Means MORE Expenses

A quality service would recognize the fact that I make the effort to be employed. I am fortunate enough to have a great job. I am employed part time, and the only allowance I receive is the mobility allowance from centre link.

The down side is, I don’t qualify for some things, such as hearing aids, simply because I am not on the disability support pension. The other thing is, I have a real need for medical and therapy support, to maintain that employment, and at the moment I would easily spend $100 or more per week on the basic treatments.

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Cost of Essential Treatments

Such as massage and chiropractor, and physiotherapy if I can.  

Without these ongoing medical and therapy supports, I am putting my quality of life under a huge risk, particularly as I get older.

The fact is, that I have cerebral palsy, which of course, magnifies the risks, with general ageing.

Therefore, ready access to therapy services would maintain the quality of my life.

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Benefits of Employment

On the positive side of being employed, it is good for my well-being and I love doing a job that I am passionate about.

Being employed also allows me to give something back to the community, pay my taxes and not be a burden on the community. Again, access to therapy services and more hours of home support would enable me to keep going.

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Support for Work

There are personal support needs I have while at work, managing ten hours a week to guide someone to assist me with lunch, note taking, putting presentations together and phone calls. For me, this person needs to be flexible, and reliable. If they are not, I get behind in my work, and I cannot be professional.

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I Have Complex Disabilities and I Have Complex and Multiple Needs

It is not just about getting a wheelchair or a communication device, and then it stops there. It is about both. It is about more than one piece of equipment. It is about different adaptors, switches and mountings.  It is about maintenance for equipment and insurance cover. It is about training support and education needs. It is about telecommunications needs and purchasing the right equipment for the person, to be able to access. The list is end less, but unfortunately, the money, and hours of support to help manage all this, stop too soon.

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Quality of Service is Vital

The quality of services I receive is really important to me, speaking from the perspective of someone with high support needs, and someone who has multiple needs.

Unless services know about my needs, and the gaps, nothing will happen. Nothing will be achieved to achieve and maintain my quality of life.

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These Are The Questions IAsk Myself Each Day. If I had the answers, I would have a quality service:

How can I expand my support package? How can I pay for all my health needs, including therapy

sessions? How can I buy more equipment to help me live more

independently and safer in my home? How can I go on holidays when the cost is doubled,

because I take a support worker? How can I ever buy my own home, when I can only

work part time. How can I go more places on weekends, when getting

there is getting too expensive.

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A Challenge to Improve Quality: Make Life Easier for Individuals

I have made this happen by sheer perseverance. But now, I ask:

How am I going to survive as my needs get harder to meet?

I challenge the government and the community to collaborate in finding individual solutions to complex problems. To make life easier not harder for people with disabilities who both work and live as part of the community. That’s my definition of a quality service.

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Thank You

Contact: Melinda SmithCommunity Development

WorkerCommunication Resource

Centre830 Whitehorse RoadBox Hill 3128

Email: msmith.crc@scopevic.org.au

Website: www.melindasmith.com