Over the past two years, motor neurone disease has progressively strengthened its hold on Terry Kneebone.
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In that time, his wife Janelle has been waiting for the federal government’s home care package to become available.
So when the Howlong couple learned of scrutinised tax-payer funded trips taken by their local member and Health Minister Sussan Ley, “it felt like a slap in the face”.
They were approved as eligible for a three and four-level home care package in November 2014.
Mrs Kneebone said they were also entitled to lower level care, “while waiting for level four”, but two years after Terry’s assessment they had still not received even that.
“Just two weeks ago they gave me level one, which is five hours a week for respite and things around the house,” she said.
“Today, for the first time in two years, they’re sending someone here to help me shower him.
“They told me I have to wait for someone to die before I can get level four – I couldn’t believe it.”
Mrs Kneebone said she would soon struggle to care for Terry, who now couldn’t speak or breathe properly.
“At first, we didn’t push it because we knew others needed it more,” she said.
“Now, Terry’s getting worse – he needs help with showering and I feed him through his stomach.
“This disease is terminal; soon he’ll be bed-ridden.
“He doesn’t deserve this.”
Mrs Kneebone contacted Mercy Health Albury palliative care, which is separate to the home care package.
“They got me HammondCare, which you can only have for 48 hours at end of life, and it ran out,” she said.
“Then he ended up in hospital, and I rang up and said, ‘I really need help’, so the ladies at Mercy ended up giving me another 48 hours.
“Just before Christmas, they told me it was up again and I couldn’t get any further help.
“I rang Sussan Ley’s office and the person who answered the phone didn’t even know what motor neurone was.”
In September, the couple received a reply letter on behalf of Minister Ley outlining there could be “a waiting period between an assessment … and the time you are offered a home care package”.
The letter came after Terry had been assessed a second time, to no avail.
“To drive people down from Canberra in a government car, who say to us we’re entitled and then don’t help us, is just so wrong,” Mrs Kneebone said.
“There must be other people, with not only MND but other diseases, who are not getting help.
“It’s enough you have to watch someone you love disappear before your eyes.
“I don’t want anyone else to go through what Terry and I have been through.”
