Unable to move and alone for 16hrs/day. The Government says I am too OLD for more support.
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My name is Loredana. I am 68 years old. I have 2 adult children. I live alone in my own home. I was a Language Teacher for over 35 years. I have a great sense of humour, I love life, music, food, good conversation and meeting people. I also have a Progressive form of Multiple Sclerosis for which there is no cure or treatment.
I can no longer walk, I cannot use my hands and I am totally reliant on paid carers for all my physical support needs. My carers wash me, feed me, move me from my bed to my wheelchair and back again. My carers change and empty my stoma and catheter bags. I also have assistance with housework, shopping and attending to my mail. I have no movement below my neck. I use my mouth to tilt my wheelchair and to make and receive phone calls.
Multiple Sclerosis can affect almost all body functions depending on where the lesions take hold. As a result of my MS, I am extremely sensitive to the cold and heat, become easily fatigued and suffer from spasms and pain that are minimally relieved by medication.
I receive 8hrs support per day, paid for by the State government. THIS IS NOT ENOUGH TO MEET MY BASIC NEEDS.
I have been informed my funding package will not be reviewed, (despite evidence from a government sponsored assessment that it is inadequate), as I receive the “maximum amount” allowable.
I cannot access the NDIS (individualised funding for people with disability) because the Federal government changed the Law to be able to discriminate against people over 65 with life-long disability and deny them access to the NDIS.
I do not want to move into a Nursing Home and I would actually be worse off, with a significant reduction in the amount of 1:1 support I would be able to receive. Nursing Homes are not set up to meet the needs of someone like me. I want to keep living in my own home with a reasonable amount of support to meet my needs.
I am asking that the Minister for Disability intervene on my behalf to increase my current funding package above the "capped amount". I am asking that my specific situation be considered in determining the support package I am entitled too rather than it be solely a financial decision.
With additional support, I would be able to go out for medical appointments, shopping and social activities – THIS IS NOT CURRENTLY POSSIBLE.
I would also be able to access some overnight support which I currently don’t have. If I have a spasm in the middle of the night I am unable to shift my weight to alleviate the affected limb. I must wait until my first carer arrives at 7.30am.
Multiple Sclerosis can affect anyone, it does not discriminate. Multiple Sclerosis has trapped me in my body and the Government has trapped me in my home by setting a dollar amount on what my life is worth.
PLEASE help me and sign my petition asking The Minister Ray Williams to intervene on my behalf for more adequate funding. THANKYOU!
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