Woman waits over a decade for house

BATTLE Mary's fight to live independently raised in Dáil

A woman with cerebral palsy feels her lifelong wish to live independently is being thwarted by a failure by health officials to sign-off on a care-plan necessary to move the process forward.

The hold-up is all the more frustrating for Mary Tackney given that Cavan County Council recently purchased a house in Ballyhaise, close to where her family lives, to convert to communal independent living accommodation for persons with physical disabilities.

Despite the availability of funding, without a care plan, the local authority can’t proceed with modifications to the property.

At present, Mary lives at the Tackney family home just outside the village and, as her mother, also Mary, explains: “To [Mary], this is my house, and she wants her own. She doesn't want to live here any longer. She wants her own space. She wants her dignity.”

Such accommodation would provide Mary with the ability to live independently, albeit with assistance at meal times, toilet, washing and bed. Outside of that Mary shops independently, operates texts on her phone, and accesses her own Zoom classes on her iPad.

Her need to secure independent living accommodation is exacerbated by the fact Mary's mum is dealing with illnesses of her own and has become less able to care for her daughter.

“Mary sees all that's going on and feels it's not fair [for mum Mary] to be looking after her when she can't. She wants what's best for her and for mam,” explains Mary's sister Monica, one of several siblings who regularly pitch in with Mary's daily care.

Asked what it would mean to her to live independently, Mary responds with a smile, which stretches to a wide grin, warming her youthful face. “That smile, that's your answer,” remarks Monica.

Earlier this year, having contacted all local TDs, Sinn Féin's Pauline Tully raised Mary's plight in the Dáil, calling on the Government to adhere to the UN Convention on the Rights of Persons with Disabilities, to which Ireland signed up in March 2018. The convention states that people with disabilities should have the opportunity to choose their place of residence and with whom they live on an equal basis with others.

Deputy Tully told Minister of State at the Department of Housing, Local Government and Heritage, Darragh O'Brien, that she was aware of “at least five persons with disabilities who have been waiting more than 10 years” for housing. Mary was among those on whose behalf Deputy Tully was speaking.

“It is a direct denial of people's right to live independently and it is in contravention of the UN convention,” she argued.

“Disabled people are being forced to live with ageing parents who are being expected to provide what sometimes is quite complex care for a son or daughter. That is not dignified for anyone concerned. Many ageing parents, often in their 70s or 80s, constantly worry about what will happen to their son or daughter when they pass.

“They fear their child will end up in a residential setting, possibly miles from home and family and without the proper level of suitable care. We have many documents that outline that this issue will be addressed but it has not been addressed thus far.”

As far back as the Tackney family in Ballyhaise can remember, it has always been a “struggle” to make sure Mary has been able to access all that she is entitled to.

Mum Mary remembers a priest saying to her late husband Paddy, who'd bring Mary to Mass regularly, “'would you mind leaving her in the porch until the other people get in, so they're not having to walk by her?' He said to him 'I'd put my dog in the porch, but not my daughter'.”

When one of Mary's HSE appointed carers retired towards the end of last year, securing a replacement wasn't straight forward. Great upset was caused when the person given the role was male. A new carer still hasn't been assigned.

As mum Mary says: “It'd exhaust you to tell you all that's gone on.”

There have been false dawns too, to make matters worse.

Mary, who celebrated her 50th birthday late last year, finished up with Drumlin House 18 years ago. Three years later, she started at RehabCare Resource Centre & Supported Accommodation Service. Even then, mum Mary remembers “talk” of trying to find a suitable independent living situation for her daughter.

“At the time there use to be this thing called a 'five year plan', but that never was put into practice,” she says, her hand on a stack of papers detailing the catalogue of correspondence that thus far has come to nought.

Says Monica, with her hand on her sister Mary's arm: “A 50-year plan and we'd still be going on the way we are.”

Mary nods back in eager agreement.

“You'd wonder if there's any real thought put into any of these decisions at all. So you have to speak up. It's what you have to do,” Monica says.

“So long as Mary lives at home, someone needs to be there with her. There's a lot of work goes into making sure all Mary's needs are looked after. If none of us were here, there's no physical way mammy could do it all herself.”

One of the greatest regrets the Tackney family live with is that their father Paddy died before seeing his beloved daughter Mary living independently.

Since his his sad passing, Mary was appointed a house at Castlemanor but for the HSE to do a u-turn on the decision considering it would simply “cost too much” to fit it to suit her needs.

“So we were back to square one,” says Mary's brother Martin who has welcomed the change in attitudes in recent years aimed at giving people with disabilities the supports to live independently and be part of their local community.

“We just need to see it happen here,” says Martin, who describes the house available in Ballyhaise as “perfect” for Mary. It would be, in his words, a place for his sister to call “home”.

“She's probably been listening to this for years. She's fed up listening and getting no where. It's not that they don't know [Mary], they know her needs. She's been around 50 years. They'd want to know her by now.”

Both the HSE and Cavan County Council have been contacted for comment in relation to the issues raised in this article.