Meryl
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Meryl is in her 60s and has cerebral palsy, bipolar disorder and depression.
‘I got married at the age of 19, I have two wonderful children … I’ve travelled the world,’ Meryl told the Royal Commission. ‘I’ve bungee jumped. You name it, I’ve done it.’
A few years ago, the NDIS was supporting Meryl with a cleaner for a few hours a week and a hoist to help her husband, who has arthritis in his spine, lift her when cerebral palsy caused her to fall.
A ‘freak fall’ a few years ago ‘took away [her] ability to walk’, and she rang the NDIS to ask for more support.
‘I went through the fact that I was using a toilet commode as a wheelchair … because I could not manage a manual wheelchair. I went through the fact that my husband could not care for me. He has severe back arthritis, he’s a diabetic … They seemed to understand. They seemed to not question anything.’
But instead of increasing her supports, the NDIS cut her funding.
‘I was amazed. I thought, what? When I rang I was told that I should have supplied this document and this document and this document. No-one told me that in that phone call.’
Meryl asked them to review the decision and someone from the NDIS called to ask ‘the most intimate questions’.
‘So, yeah. “Are you really so disabled that you cannot toilet yourself?” Well, yes, I can toilet myself. “But can you still wipe all your areas?” Yes. I can still wipe all my areas. Yes. I still sleep in the same bedroom as my husband. Yes. We can still have sex. I have no idea what that had to do with anything, but she asked it anyway. I mean, really?’
Meryl said nine months later the NDIS agreed to increase her funding to several hours of support a day and no motorised wheelchair.
‘We can’t manage. I am showering using a shower hose in an ensuite because I cannot access the shower … I’m actually recommended by every OT assessment for 24-hour care … What we have asked for is 12 hours a day.’
Meryl said she appealed again and received an extra one hour of support a day. Instead of the powered wheelchair, she was allowed a mobility scooter to go shopping.
Meryl said she’s now in a ‘far worse state’ than she was when she had the fall.
‘The irony is their initial reason for not allowing the [motorised] wheelchair was that they didn’t deem it was safe.’
An occupation therapist [OT] told her she now needs a motorised wheelchair with a lift function to help her transfer from the chair to the toilet or bed.
‘The initial chair, power chair was valued at $15,000. The latest OT assessment that I had has now recommended a [far more expensive] one.’
‘The intent and implementation of the NDIS has set the standard world high. It's been a long time coming and one I thought I wouldn’t see,’ Meryl told the Royal Commission.
‘For the last few years [the NDIS] worked. However, the system has now become broken, very broken. And for many, many people like myself that spend their lives with emotional and often physical nightmare, it seems to have no end in sight.’
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.