'You are treated like a lump of lard, to be washed, dressed, fed': Disabled woman hits out at home care system

From left: Margaret Kennedy and Gladys O’Neill, members of disability advocacy group Cothrom at the seminar in Dublin on Wednesday. Picture: Karl Hussey

An academic living with multiple disabilities has said she feels "deleted" by the health service, which expects her to go to sleep at 7pm in the evening.

Margaret Kennedy, a PhD expert in the fields of child and adult protection, said once someone turns 65 in Ireland — when personal assistance provided by the HSE moves from an independent living model to a more basic care-at-home system — they are no longer deemed to be productive and unworthy of assistance.

Ms Kennedy, a 73-year-old twin sister to Ann, who also suffers from Parkinson's disease and muscle myopathy, told a conference in Dublin she feels "humiliated" by being unable to access personal assistance on her own terms.

Addressing a seminar in Dublin organised by disability advocacy groups Cothrom and Care Champions, she said the care afforded her amounted to "coercive control", as she was made to sign a contract agreeing "to get ready for bed at 7pm", saying she was told "if you don't sign we cannot give you a service".

"I am incontinent. If I'm changed at 7pm, by 12am I'll be soaking wet again. I cannot stand or walk," she said.

I wake up at midnight and I'm totally wet. The sheets are wet, the bed is ice cold, and I must lie and sleep in bed wet until the next morning, when someone comes at 7am. I have to, I have no choice.

"I think of who I used to be. It is distressing and humiliating," she said, adding she knew of at least three people in a similar position to herself who have to go to bed at 4pm.

"I wonder how many of you would want to go to bed at 4.30pm in the afternoon?" she asked those in attendance.

The seminar, primarily dealing with the issue of personal assistance (PA) for those with disabilities, heard from Eamonn Carroll of the ESRI, which found there was an urgent need for — in particular — more PA hours and a broader range of supports.

Mr Carroll said the ESRI's research found while a significant number of people feel the PA system is meeting their needs, a large cohort — 40% — do not feel that way.

Ms Kennedy said she was often given late notice of which carers will attend her, often people she has never met before and who have no knowledge of her own situation, while on other occasions carers have failed to show up at all.

"Where is the respect, the dignity, the choice? Where is the respect in the system? There is none. You are treated like a lump of lard, to be washed, dressed, fed. Your life does not have meaning," she said, adding there are some carers "I would not let through my door".

She told the conference a service manager had told her if she continued to decline care she would "end up in a nursing home".

"Coercive control" is endemic to the current system, Ms Kennedy said. "This is all abuse, this is an infringement of my human rights, this is coercive control. If we’re not honest about what’s going on nothing will change," she said.