Three-year catch-22 battle for a home after spinal injury

NUI Galway neuro science graduate caught in regulatory limbo with HSE and council

Geraldine Lavelle has been living in a so-called congregated setting in Sligo for three years. She says it would have been “mentally crippling” to move home

Geraldine Lavelle has been living in a so-called congregated setting in Sligo for three years. She says it would have been “mentally crippling” to move home

 

Geraldine Lavelle says that after the accident which damaged her spinal cord, people presumed she would move back in with her parents.

Then 27, she had been living away from home for 10 years , and while her parents and siblings have been her rock since that life-changing event in October 2013, she says it would have been “mentally crippling” to move home.

“Why should you have to go back and live with your Mammy and Daddy. You are still who you were. You just need a bit more help getting up in the morning,” she said. “I think that would have been very mentally crippling. I do go home every weekend. And I love to see my family. My parents and my two sisters and my brother have kept me going through all this”.

The NUI Galway graduate who has a master’s degree in neuro science, was living with her boyfriend in Longford and working locally with the healthcare multinational Abbott when she had the accident while out cycling. Her relationship has since ended. “Apparently, the statistics aren’t great for people staying together,” she remarks.

She feels caught in a ‘chicken and egg situation’ between the HSE and Sligo county council

Lavelle moved into the Cheshire Ireland residence in Sligo town, thinking it would be a temporary home for three months while she tried to adapt to life in a wheelchair and regain some independence. Three years later, she says having to live in a so-called congregated setting – the official term for an institution with 10 or more residents – is affecting her mental health and quality of her life.

“The staff are lovely. Don’t get me wrong; that is not the issue. The issue is privacy and independence,” she says. “You become very reliant. One lady is here 18 years. And I’m not saying there is anything wrong with that. It obviously works for some people. There are people here with all ranges of ability, but no one I can relate to”.

Now 31, she says she has been trying for more than three years to find alternative accommodation in the community – in line with Government policy and the HSE’s own 2011 report, Time to Move on from Congregated Settings – A strategy for Community Inclusion.

Geraldine Lavelle paddleboarding in her chair: she uses a manual, rather that a power wheelchair, in order to maintain her fitness levels
Geraldine Lavelle paddleboarding in her chair: she uses a manual, rather that a power wheelchair, in order to maintain her fitness levels

To regain her independence, Lavelle needs a home support package from the HSE, but says she feels caught in a “chicken and egg situation” between the HSE and Sligo county council.

In a recent letter to the HSE, Mayo Fianna Fáil TD Lisa Chambers agreed with the sentiment: “I understand that if Geraldine was offered a house she may get a support package from you quicker to allow her take the house. So we are in a chicken and egg scenario – if she had the house she’d get the package quicker and if she had the package she’d get the house quicker.”

Homecare package

Describing the HSE response as “totally inadequate”, Chambers tells The Irish Times that no timeframe has been set for allocation of a homecare package. “It could be next year, it could be the year after”.

In a letter to the HSE, Lavelle pleaded for a commitment. “It can’t be an open-ended answer that I am on a waiting list with no end in sight since my application was made for independent living in 2015. I appreciate how tight resources are but that is unacceptable in my view.”

Her current accommodation – which comprises one room, a bedroom/living room/kitchenette with an en suite bathroom – has its own entrance from the street, but like the other residents’ rooms it also opens on to a corridor. Her brother has built shelves and done other renovations, but it doesn’t feel like home to her. “It’s like a dorm situation. I keep my door locked. People used to just walk in and out.”

The Castlebar native spent a total of 10 months in Dublin’s Mater hospital and the National Rehabilitation Hospital (NRH) in Dún Laoghaire following the accident.

One apartment was on top of ‘the Hill’ in Sligo town

After leaving the NRH, she remembers spending one night in a facility in Bohola, Co Mayo. “It was 5km outside Castlebar – just a building, no shops, nothing. I stayed there one night with my mam and, oh my God, I cried and cried and thought this is not where I am going to end up surely.”

Sligo had more attractions, including job opportunities. She spent six months working with Abbott in Sligo, and for three years she tutored health science and physiology students at IT Sligo. She also currently writes a weekly column for the Sligo Weekender, which like her blog, gives a good insight into the triumphs and frustrations of her life.

But her main preoccupation for three years now has been finding a home. While the county council suggested three options, including one fourth-floor apartment, she says none were appropriate. “What would I do if there was a fire and I was trapped on the fourth floor? I just would not feel safe there. I went to see it and there was a big sign saying, ‘Do not enter the elevator in the event of a fire’. I thought ‘well that’s reassuring.’”

Geraldine Lavelle using a bionic suit which enables people with paralysis or lower limb weakness to passively walk
Geraldine Lavelle using a bionic suit which enables people with paralysis or lower limb weakness to passively walk

Two other apartments were on elevated sites which she says she could not negotiate, not least because she uses a manual, rather that a power wheelchair, in order to maintain her fitness levels. One apartment was on top of “the Hill” in Sligo town and, according to Geraldine, she would need a male helper to push her up and to “hold my chair tightly in case it took off down the steep hill into a busy traffic junction”.

‘Limited resources’

In a statement, Sligo county council said it “fully stands over its efforts” and that “the housing team in Sligo work with great commitment and have a very good record in terms of responding to housing needs with limited resources.”

With limited power in her hands, Lavelle wears gloves to prevent them from getting chafed and cold, but says the manual chair helps her to stay fit. “A power chair would be easier outside, but then you are cutting out all your exercise and upping your chances of obesity, diabetes and heart disease and all that comes with that. And you are more prone to chest infections if you are not moving. I was always very health conscious and after the accident I was afraid I would be stationary, stuck in a chair, for the rest of my life. It did bother me.”

My mental health has definitely suffered because of my living circumstances

In her blog she has highlighted the problems for people in wheelchairs who can barely squeeze into disabled toilets and sometimes have to suffer the indignity of having to empty catheters bags with the door ajar. She has also detailed how, after suffering years of anxiety before her accident, afterwards it was as if “all at once all my nightmares occurred, the imaginary evils I had once feared had come to life”.

Geraldine Lavelle at the wedding of a close school friend, Martha, in Autumn 2014, almost a year after her spinal injury
Geraldine Lavelle at the wedding of a close school friend, Martha, in Autumn 2014, almost a year after her spinal injury

She used to lie awake staring at the hospital ceiling wondering whether it was all a bad dream , she says.

Keeping optimistic about the future would be easier if she had her own home, she says. “My mental health has definitely suffered because of my living circumstances. I am a 31-year-old adult living in a congregated home in 21st century Ireland. That should not be happening. Everyone is entitled to their own home. I’d buy in the morning if that was an option.”

Geraldine Lavelle at the wedding of a close school friend, Martha, in Autumn 2014, almost a year after her spinal injury
Geraldine Lavelle at the wedding of a close school friend, Martha, in Autumn 2014, almost a year after her spinal injury

She says that sometimes she feels like she’s in a box. “I’m in a room for up to 18 hours a day. If it’s raining outside I can’t do anything as I don’t drive. I would like to be back working, to get driving again. Getting a home would be the first step in becoming more independent.

“I’m 31 now. I always think, which I suppose I shouldn’t, about what life would be like if the accident had not happened. Both my sisters are buying homes, my brother has his own home. You get to a stage where you have the nesting instinct and want your own place. I don’t have a choice even about integrating in a community.”

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