In 2015, Alison Robinson was diagnosed with Huntington’s disease, a genetic disorder that causes the progressive breakdown of nerve cells in the brain that will rob her of her physical and mental abilities and has no cure.
The 51-year-old and her husband, Bill, have faced some tough decisions since her diagnosis, but one issue they had hoped to have sorted was finding a suitable home in which to cope with the challenges ahead.
Mrs Robinson said they wanted to be proactive about housing and went through Social Security’s Housing Gateway unit and were placed in the highest-priority band.
While they checked the housing listings every week, she said they had had no other contact from the Gateway team.
‘There is only ever four to five units on there,’ Alison said. ‘Nothing seemed suitable.’
The couple grew increasingly frustrated and worried for the future.
Eventually, Mrs Robinson posted a comment about her situation on social housing administrator Andium Homes’ Facebook page.
A representative from Andium made contact with them but had bad news.
‘Because we have not been visibly showing signs of looking for somewhere, they have now dropped us down to band two [on the gateway],’ Alison said.
The couple said they were told they should have been booking viewings as well and would now have to go through the Housing Gateway again.
But Mr Robinson said when he brought the issue back to Social Security, he was met with open hostility. ‘The lady at the the front desk wanted to know what Huntington’s disease is all about,’ he said. ‘This lady was very rude and was getting very, very personal.’
He said he was told ‘everyone wants to be in band one’ and said the woman refused to let him speak to anyone else. He eventually left and the couple made a complaint to Social Security about the incident.
They were told this week that someone would look at their case again but said they felt like they were running in circles.
They are living in a private rental, but said that as Alison’s condition worsens, the property would become unsuitable, adding that their rent payments uses up 70 per cent of their
income.
Mrs Robinson said her doctors would like her to medically retire now, but she said she could not afford to lose her income without finding a solution to their housing problem.
‘It’s a lovely place where we are, but it’s a townhouse and I need something ground floor,’ she said.
‘Because I am in the early stages [of Huntington’s disease], we are trying to get somewhere now, so I am comfortable for when Billy will need to start looking after me.
‘That could be next week, it could be six months, it could be in a year’s time.’
She has seen the disease run its destructive course in her own brother, who was diagnosed five years ago and now requires 24-hour medical care.
‘That is how quickly it can progress,’ she said.
Asked for a response, a spokeswoman for Social Security said the department could not comment on individual cases, but that they do regularly review all the cases on the Housing Gateway.
‘Once we receive formal notification that such a medical condition has been diagnosed, we make every attempt to promote their application with social housing providers, she said.
‘Three years would not be a reasonable wait for someone who had been formally diagnosed with a terminal, degenerative condition.’
