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.”

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.

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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.”