St Andrews student Iain Millar has started a campaign to fight for more funding for his brother, Robb Millar, to live independently instead of in a nursing home.
22-year-old Robb is currently fighting Angelman Syndrome, a rare genetic disorder that predominantly affects the nervous system.
Main symptoms include delayed development, mental disabilities, speech impairment and reduced abilities in movement and balance.
Robb has no voice to speak for himself . . . we must be his voice
According to Iain, Robb is unable to walk, talk or look after himself and thus needs constant care, which is currently provided by his mother and carers at their family home in Lanark.
Previously, Iain and his two siblings could help with Robb’s care. However, after the three moved out of the family home, their mother found it increasingly difficult to care for Robb as it had taken a toll on her mental and physical health.
After spending a reluctant two years searching for options for Robb to live independently, the family found a place for Robb at an adapted council house.
However, the South Lanarkshire Council are currently refusing to increase Robb’s budget, which would have allowed him to live in his council home independently.
Instead, their suggested solution is to put Robb in a nursing home.
Iain said to The Saint, “Robb has no voice to speak for himself. A positive of his disability is that he is unaware of the battle raging around him to get the care he deserves. We must be his voice.”
There comes a point when keeping quiet is no longer an option
They are also frustrated that the decision was decided through email, without the social worker properly seeing and assessing Robb’s needs.
After Robb’s mother filed a complaint against the decision, she received an email from the Clydesdale Locality Manager stating that if she was unable to care for Robb, “the only available support would be admission to emergency nursing care.”
Iain also notes the strain that comes with leaving a single parent to cope for themselves in this situation.
He said, “Even when you come to University, you never truly leave being a young carer behind.
“We have tried to resolve issues quietly and with dignity for my brother, but there comes a point when keeping quiet is no longer an option. The social care crisis on our doorstep is at breaking point, and this time the cracks are dangerously close to home.”