Margaret McEwan epitomises Scotland's journey towards a more humane way of dealing with vulnerable elderly and disabled people. Her supporters hope she doesn't end up being a symbol of the collapse of those hopes.
Freed from the notorious Lennox Castle 20 years ago, Margaret was taken into the bosom of a loving family, where her life has been transformed. But now she faces being denied that home life.
The increasing expense of her care could see blind, non-verbal Margaret forced into a care home.
Loading article content
Dr Simon Duffy, director of the Centre for Welfare Reform and one of the architects of independent living policies in Scotland for disabled people, has written to Glasgow City Council health and social care chief David Williams pleading for a rethink of the social work plan to move Margaret. He says Margaret, who has severe learning disabilities will not be able to understand what has happened – and the move risks killing her.
She moved to stay with care worker April Smith on the closure of the notorious Lennox Castle hospital in 1996. “Since that time Margaret’s quality of life has increased dramatically,” Dr Duffy wrote. “a change such as this will increase the risk of Margaret’s death”.
Dr Duffy has also accused Glasgow of age discrimination and breaching Ms McEwan’s human rights.
“Austerity does not justify the forcible removal of disabled people from their own homes, and, in particular, the failure to seek a more humane resolution with all those involved,” he said.
Margaret, who likes travel, aromatherapy massages, trips in the car, and having her hair done, had previously endured a lifetime of institutionalisation.
Dr Duffy told the Herald that when he first met her she was alone in Lennox Castle and staff had little knowledge of her. “There was usually someone who knew something about all the residents. For Margaret there was nobody. She was just sitting against the wall, picking at the peeling wallpaper, alone in the most vivid and extreme sense you can imagine,” he said.
“ April Smith’s family rather randomly took Margaret to their hearts, and have stuck with her for 20 years now. Her life is modest, but has been transformed. She enjoys regular holidays, parties and is surrounded by love in a very simple way.”
April Smith was a care worker in the independent flat Margaret was first moved to after Lennox Castle’s closure. But having formed a bond with her, she took her into her home, with the support of Glasgow City Council and a team of workers who could provide the round the clock care she needs.
Now Mrs Smith is heartbroken after a decision by social workers that Margaret must move into a care home. “The current support package with Inclusion Glasgow costs around £73,000 a year, but they say it is too expensive and will cost more as Margaret’s needs increase," she said. "So instead they want to put her in a home, which costs about £43,000 a year.
“Her quality of life is going to go downhill. She used to self-harm and I’m worried she’ll start again in a home. She will not understand what is going on and she will degenerate.”
Mrs Smith has asked that if Margaret must be moved, that it be delayed until her birthday next March. “I’ve even said ‘just let me have Christmas’” but I’ve been told it is non-negotiable.
Dr Duffy is now acting as Margaret’s independent advocate and has written to Shona Robison, Scotland’s health secretary, about her situation, which he says is shocking but not uncommon. However the council does not recognise him as entitled to speak on Margaret's behalf.
A spokeswoman for Glasgow City Council said it could not comment on an individual case, but said: "The council is acutely aware that people involved in delivering care support for vulnerable people are understandably concerned about their future care.
“When a vulnerable person’s care needs change this can require different care arrangements to be put in place. Our position is that when a client’s frailty and personal care needs have reached the stage that require nursing home care, then that is what we are required to provide to meet their needs.
“We will of course always seek to manage any change sensitively and ensure ongoing support to everyone affected.”