Scarlet
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‘I believe the exclusion of over 65s from the NDIS is discriminatory and should be stopped.’
Scarlet is a polio survivor.
In the 1950s when she was a child there were outbreaks of polio in Australia. At the time there was no vaccine.
‘It was a frightening era,’ Scarlet told the Royal Commission. ‘Theatres, football matches closed down. People were asked to keep away from crowds. We are reminded of this time with the current COVID-19 pandemic.’
Scarlet remembers the doctor telling her ‘polio is a life sentence’. When she was a teenager a doctor said she would never be able to have children.
Scarlet described it as ‘a sad and difficult time’.
The sports Scarlet could play were limited and she had to wear appropriate shoes to accommodate what she calls ‘my unusual feet’.
All her life she has required regular physiotherapy, massage, acupuncture and other therapies to assist her mobility and treat her pain. She also uses medication.
About 10 years ago, not long after she turned 65, Scarlet developed post-polio syndrome. The symptoms appear many decades after polio and can include muscle atrophy, increased pain and difficulty breathing and swallowing.
Scarlet requires increased medical treatment and some assistance in her home. ‘The treatment I require to maintain my body so that I can lead an active life, and remain effectively in my own home is becoming financially difficult.’
Scarlet is not eligible for the NDIS. She said if she’d developed post-polio syndrome before she turned 65 she would be eligible.
Scarlet believes this is discriminatory. ‘It is contrary to the UN Convention on the Rights of Persons with a Disability and particularly unfair to those of us who acquired our disability as children.’
Scarlet wants people over the age of 65 who have post-polio syndrome to be eligible for the NDIS. She says people with post-polio syndrome should receive the same level of support regardless of their age.
‘Fairness should prevail for those still living and suffering from the late effects of polio.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.