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'I don't know where to turn': Family carers call for reinstatement of funding for ceiling hoists

Guidance issued to local authorities in 2020 stated that ceiling hoists should not be included in the adaptation grant scheme.

THE PARENTS OF a six-year-old girl with multiple disabilities have called for urgent action from the government to restore funding for ceiling hoists in the homes of older people and people with disabilities.

Alexis O’Mahony, who lives with her parents in Killarney, Co Kerry, has pyruvate dehydrogenase deficiency, a type of metabolic disease. She also has Cerebral Palsy, severe developmental delays and partial dislocation of her hip.

Alexis requires 24-hour care and her mother Teresa is a fulltime carer. The family also receives support from overnight nurses from the HSE.

In her younger years her parents had no trouble lifting Alexis, but her father Steve O’Mahony told The Journal they are starting to struggle.

“She’s six now and getting heavier all the time. It’s constant lifting, whether that’s for bed, baths, feeding, toileting, in and out of her wheelchair,” he said.

“If it was just the odd time then lifting her would be fine, but when you’re doing it constantly all day it does take its toll. My wife has had to go to a physio because of her back, the funny thing is that it’s a public physio so that’s being paid for by the State but they won’t pay for the hoist, it doesn’t make sense.”

WhatsApp Image 2022-08-26 at 12.29.47 The parents of six-year-old Alexis O'Mahony have been campaigning for over a year to have funding for ceiling hoists reinstated. Steve O'Mahony Steve O'Mahony

Up until two years ago, funding for ceiling hoists was provided by local authorities under the Housing Adaptation Grant for Older people and People with a Disability.

In late 2020, the Department of Housing, Local Government and Heritage issued guidance to local authorities stating that ceiling hoists should not be included in the this scheme.

The purpose of this grant is to facilitate changes to the home that are required to make it more suitable for a person with a physical, sensory or intellectual disability or mental health difficulty. It includes funding for adaptations such as works to make a home wheelchair accessible. 

This fresh guidance left families like the O’Mahonys with nowhere else to turn for State funding to cover the costs of this equipment. 

For now, they are using a manual hoist but due to its size and the floor space it requires it is not suitable for many of the tasks they need it for. 

Alexis’ father said he can understand that grant schemes or policies may need to be reviewed or amended, but he said it feels as though the issue has been “put on the long-finger”. 

Funding a ceiling hoist themselves is not an option – Teresa is a fulltime carer for Alexis and Steve works part-time.

“Last year I was given a quotation of almost €5,000 but that may have gone up massively by now with the way things are,” he said.

The Housing Adaptation Grant does still provide funding for work that is required before a hoist can be installed, such as adaptations to a ceiling. This work, funded by Kerry County Council, has already been done in the O’Mahonys’ house so it is ready for a hoist – whenever they can access some funding.

Alexis’ father said he has become increasingly frustrated with messaging from the government. 

He has tried several times to get an update from the government about an alternative funding pathway but said officials have always come back with the same line; that they are in engagement on the issue, without any timeline for a solution almost two years on from the removal of funding.

In April 2021 they were told that the Department of Housing, the HSE and the Department of Health were engaging on the issue. In July of that year they got the same answer, that this engagement was ongoing and in October they received the same response again. 

“It feels like we’re being fobbed off all the time now about something that is a basic necessity,” he said. “At this stage I don’t know where to turn.”

Alexis’ case was raised in the Dáil last month by Sinn Féin TD Pa Daly. 

“If ever there was a case which showed that the two-tier system of providing healthcare in Ireland, as well as the lack of Government dealing with an issue, it is the case of Alexis O’Mahony, who is a six-year-old girl living in Killarney,” he said.

Daly told the Dail that the lack of access to funding for this vital equipment is “taking a massive physical toll on her family.”

In a statement to The Journal, the Department of Housing, Local Government and Heritage said it aims to reach a suitable resolution to this issue “as soon as possible”.

“The Housing Adaptation Grant for Older People and People with a Disability scheme is underpinned by secondary legislation. The provisions of Regulation 7 of the Housing (Adaptation Grants for Older People and People with a Disability), Regulations 2007 set out the types of mobility aids that the grant can be used for, including accessible showers, access ramps, grab rails, stair lifts and other minor works to facilitate the mobility needs of a member of a household,” it said.

“The funding of fixed track hoists are not provided for under the scheme.

“However, this Department is continuing to engage with the Department of Health and the HSE on this issue with the objective of reaching a suitable resolution on the funding of hoists as soon as possible.”

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    Mute Paul Gorry
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    Aug 28th 2022, 12:45 AM

    This should be rectified immediately by the Irish government.

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    Mute Alan Wright
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    Aug 28th 2022, 1:26 AM

    @Paul Gorry: Not a chance man. Our “compassionate” government cares not a jot for our real vulnerable people. Will Varadker have a soundbite of this tomorrow?

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    Mute Paul Gorry
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    Aug 28th 2022, 1:34 AM

    @Alan Wright: Absolutely not Alan. This government is flying without wings at the moment and are going to have a well deserved hard landing.Imho.

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    Mute Alan Wright
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    Aug 28th 2022, 3:26 AM

    @Paul Gorry: I hope so. FF/FG have been unabashed for 100 years. Anyone can watch the TV show: Realing in the Years. Not an episode goes by without a scandal from those two parties. Roll on an election, sooner the better mate.

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    Mute Paul Gorry
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    Aug 28th 2022, 3:44 AM

    @Alan Wright: Absolutely Alan but let’s never forget the “people party ” allegedly Labour.

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    Mute Marianne Sherlock
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    Aug 28th 2022, 6:43 AM

    People with special needs should have all necessary equipment provided by government ..

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    Mute Paul Whitehead
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    Aug 28th 2022, 9:38 AM

    @Marianne Sherlock: I took on the full-time carer role of my disabled sister (Downs and severely reduced mobility) in 2013 when our mother died. I applied to get a stair-lift in my home as she was unable to use stairs. It cost close to 7500 euro. I got a ‘grant’ of 1015 euro. I was turned down for any carers allowance as I have a small private pension. If you take on the care of a disabled relative, don’t expect support from government. My sisters’ respite care with Stewarts Care, has recently been reduced by 70%. I might add I’m also disabled, so it is no easy job. Due to lack of support and my own declining health situation, I am now sadly forced to apply for a permanent residential place for her in full-time residential care, costing multiples of providing decent respite services.

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    Mute David Dineen
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    Aug 28th 2022, 10:30 AM

    @Paul Whitehead: i wish i could hug you man, i feel your pain.. Much love and respect to you

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    Mute Bananaquit
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    Aug 28th 2022, 10:42 PM

    @Paul Whitehead: I’m very sorry that that is the situation that is forced on you and your sister. There us no joined up thinking or compassion from the government or health service. My little girl has a progressive illness which requires surgery and I’ve to beg, cry and plead for scans and check ups that she’s entitled to but they don’t want to give her.

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    Mute Bernard Mc Grath
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    Aug 28th 2022, 1:33 AM

    Seriously in the grand scheme of things how much would this cost the government

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    Mute Paul Flavin
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    Aug 28th 2022, 1:32 PM

    This is all crazy and nobody in the government is interested. I have a 22 year old son with CP. My wife has cared for him all his life so we are a one income family. Everytime we try to get anything from the state we are told it is means tested and we don’t qualify. My wife can’t even get the careers allowance. Last year I contact 10 different politicians in writing for help and only 3 responded of which I spoke to 2 and they took all my details and guess what…. no further response. If one of them had to lift a 22 year old everytime these needed to use the toilet or shower or get in and out of bed then they work be quick to make changes to the system…

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    Mute Liz O'Neill
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    Aug 28th 2022, 12:27 PM

    Yet,if a child’s challenges are deemed to be the result of somebody’s negligence ( ég,H.S.E.) then collosal amounts of compensation are doled out, often far more than the child would ever need for their care or their carers. Need should surpass every other consideration when financial decisions are made?

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