Mum of severely disabled daughter has ‘heard nothing from those in power’ after TV appearance
Her daughter can’t speak, eat solid food or walk
A mother who recently shared her story about caring for her disabled daughter on national television has admitted she is ‘disappointed, but not shocked’ by the lack of response at government level.
Since appearing on The Late Late Show, Johanne Powell says she has been inundated with messages of support from other carers around the country.
However, after highlighting her experience looking after her daughter Siobhan (32), Johanne says she has not been contacted by any politicians or members of the HSE, which is the main reason she went public.
“To be honest, I did expect this time that they would be in contact. They try to avoid you like the plague if they can,” she told Independent.ie.
“You think they would even be telling us that there is something in the pipe line, but they’ve told us nothing.
“We have heard nothing from those in power.”
Johanne has been contacted by carers from all over Ireland who thanked her for “telling it like it is”.
Her daughter Siobhan has a rare chromosomal disorder, profound mental disabilities, is unable to walk or eat solid food and only has one kidney.
But Johanne says there are parents who have it more difficult than she does.
“There are lone parents with two and three children; there are people who have higher medical needs than Siobhan.
“I got a message from someone whose 82-year-old mother with dementia is looking after her 53-year-old disabled daughter. It’s awful.”
Johanne met her husband Alan in 1975 and moved to Fethard-On-Sea in Wexford.
Siobhan was born in 1984, and Johanne says she hasn’t had much of a life since.
“There are people in the local village who don’t even know who I am as I rarely get to leave the house.
“She is our daughter and we love her very dearly, but we are not getting any younger. We have lost so much of our lives because of this.
“I don’t want to go out every night, far from it, but it is to be able to do it and be able to take up an invitation to go to a wedding, or a christening, or a party.”
Originally from Norway, Johanne has a disabled niece who had the opportunity to go to a mainstream school and now has her own flat, with full-time staff caring for her.
She accepts Norway is probably financially better off as a country, but finds it frustrating that carers in Ireland get very little respite.
“I know that the cost of care is very expensive and I know Norway have the oil money etc. But all I ask for is even just one weekend every month of respite. That’s not much to ask for, is it?
“We are just keeping our heads above water, but what if anything happens to one of us? They’re telling us not to worry as she will be given care, but why can’t they have it now?”
She explained how there are just 158 beds available for residential care in Wexford, with 61 names on a waiting list.
“As far as we know, there are no plans for an expansion of the services, so 61 people have to die to clear the list, basically.”
Siobhan’s name has been on the waiting list since 2013.
In a statement, the HSE said that “high-priority service users” are provided with home support, respite and a day service until a residential place becomes available.
However, Johanne says it is not clear what counts as high-priority.
“You can’t even find out what position you are on the list, or what the criteria is for being on the list, that’s the frustrating thing.”
For 2017, Johanne hopes that there will be developments in the provision of help for carers in Ireland.
“All I want is for there to be regular respite, and the sign of Siobhan being able to move into a residential home in the near future.
“Years ago, when Siobhan was first born, I thought how lucky people will be in years to come when developments have been made, and people won’t have the same difficulties as us.
“Improvements have been made, but thirty years later, they are practically in the exact same position.”