MOTIVATION – Reluctant campaigner Tony Murray tells his family’s story

“People say it to me that it must be like having a black cloud over you, but it’s not like that, because a black cloud will lift eventually. It’s more like a black hole. At present luckily both Susan and I are healthy, but it can change in a flash and then Aoife’s situation becomes an emergency.

“In our old naive way of thinking we thought that St. Michael’s house, which is the service that Aoife is in, would step in and they would provide after we die. But they’re saying that is out of the question.

“I had no idea of this. What will happen is absolutely shocking. Basically, after we become incapacitated or die Aoife’s care package will go out to tender. Those words alone – “It goes to tender” – are so upsetting, because we all know what the government normally does with a tender. They usually take the lowest bid.”

“What happens is that within a six-week period of, let’s say, Susan and I being incapacitated or dead, Aoife loses her home, her social activities – and her service, which is her life.

“The ideal thing for Aoife and us would be that Aoife would gradually move into her own place, her own new home. She would segue into it. She might just go one night a week to start with. She would feel safe. We could monitor it and eventually her new home becomes her new home. She could slowly adjust. But that’s a fantasy. That doesn’t happen,” he said.

Speaking at an Oireachtas Committee on Disability Matters (on Feb 4) Angela Colgan from Stewarts Care made the same point: “The availability of respite is important to enable [people with an intellectual disability] to know what it is like to live outside the home and beyond the family and to give families this security.”

However, in some cases, as TD Liam Quaide pointed out in an earlier Disability Matters debate (on Nov. 26 last) “people are placed more than 200 km from home” and sometimes “in quite an isolated setting without access to community supports, and they can remain stuck in that situation indefinitely”.

Tony is fearful that safety issues could arise if Aoife is living far from relatives who could drop by, isolated from her friends and local connections.

“You know that phrase ‘Out of sight, out of mind’, all that kind of thing,” he said, describing distant residency as “a recipe for neglect”.
He also fears Aoife would not be easily understood, particularly as often staff speak English as a second language and even he struggles sometimes to know what Aoife is saying.

He and Susan are glad the ‘Before We Die’ campaign has won attention, but clearly their concerns have yet to be allayed.
In another scenario Aoife could be provided with independent living in an apartment of her own, but Tony believes she would be vulnerable to being preyed on by others in such a setting as she has the mental age of a young child.

“Accommodation you get from the local authority tends to be one-bedroom apartments. But for somebody like Aoife who has got significant needs, that’s no good,” said Tony.

Again, at the recent meeting of the Oireachtas Committee on Disability Matters (Feb. 4) Lorraine Egan, CEO of Horizons, noted that: “Individualised living can turn into one person in one house, and there is a risk of isolation there.” She said the sector and the National Federation of Voluntary Service Providers was well aware of this issue.

In fact, probably every point raised by Tony in his interview with Changing Ireland has also been mentioned in discussions in Leinster House, but his group has highlighted the urgency of the matter.

“How come the system has not been able to match the service to a predictive need?” he asks, still perplexed that nursing home places can be found for older people who do not have a disability.

“There’s no surprise with Aoife. From the age of one, when she was diagnosed, they knew there was going to be a problem. Like, it’s not rocket science. I’ve raised with politicians, and they kind of said, well, that’s true.”

In the meantime, there is no rest for Tony and Susan. While funding for respite and residential places is increasing, Keira Keogh, TD, noted in another debate recently (Oireachtas Committee, Feb 26) that it had not yet translated into changes on the ground that she could see.

“How quickly do we think the uplift of the budget will start making a difference on the ground?” she asked.

Nobody had a clear answer. In the meantime, Tony, Susan and Aoife and other families are struggling with scarcity.

Much sooner than later the Murrays and many other families need to see change. Tony highlighted some of the challenges and areas worth focusing on.

Church to State

Where the Catholic Church once provided care, the State is now responsible.
As Tony sees it, “The State took it over, but never put in place a sustainable system. So now it’s just emergency, emergency, emergency, which is the most expensive form of care. The for profit companies have the HSE over a barrel. They can charge what they like, because the HSE have to solve the problem.”

Decongregation gone too far

On decongregation, Tony felt it had gone further than parents would like. He believes that up to 10 people in a house is fine, and advocates for clusters of housing, as can be found around the country for students and for older people. However, he pointed to just such a cluster setting that was recently decongregated, because it was deemed too large.
“Most parents would have given their eye teeth to have their adult child in a safe setting like that,” he said.
He also believes that decongregated houses are not really “in the community”.
“It’s nearly a fashion: ‘Oh, we’ll put them out in the community’, but the community really doesn’t care that much, you know in big cities people are too busy with their own lives,” he said.

Burden on women

There is also sexism. He told of a young social worker who said to the father of an adult female with an intellectual disability, “It’s a pity you haven’t got another daughter.”
He understands the question because Susan looks after their daughter’s most intimate care needs.
“However, it illustrates how bad the system is, because they’re saying this not out of malice,” said Tony.
Another ‘Before We Die’ member told ‘Changing Ireland’ of a similar experience.

Catch 22

Tony said parents are presented with a bureaucratic nightmare when trying to support their grown-up child to access housing.
“Effectively you can’t get a house unless there’s a care package with the HSE. The HSE won’t give a care package unless there’s a house. It’s a classic catch-22.”

Meanwhile, he has noticed an unwelcome change in language from the HSE where there is less talk about “care and compassion” and more focus on “support”.

“Support is a very different thing to care. It’s a more mechanical thing,” he said, acknowledging that both are required for different situations.

Sympathy for providers

He has sympathy for the service providers.

“There’s no multi-annual funding, so they can’t plan because they don’t know what they’re going to get next year,” he said.
Also due to it being a mainly female workforce, maternity leave can sometimes lead to reduced staff numbers.

“It’s largely young women. So when they go on maternity leave, unlike teachers, they’re not always replaced, particularly if the staff are from a day service. If they are working in a residential home, they will have to be replaced, because HIQA (the Health Information and Quality Authority) will say you’re understaffed.

“It’s also stressful challenging work and sometimes staff get injured and go out sick and there’s no replacement. So the service providers are constantly running on a treadmill,” said Tony.

EDITORIAL – ‘Before We Die’ campaigners show need for greater compassion