Galway mum Ann Boland – whose daughter Margherita was born with Down syndrome – sums up what it’s like to care for a child with special needs.
“When a child with extra needs is born into the family, it’s like playing a game you don’t know the rules to; where the goalposts are continuously changing and there are more referees than actual players”.
Ann, who lives in Rahoon, is one of thousands across the city and county caring for a dependent with special needs.
The Disability Federation of Ireland (DFI), the umbrella group for 120 member organisations in the voluntary sector providing services to people with disabilities, has calculated that there are 10,133 people in Galway with at least one disability.
More critically, DFI says that the chances of these families living in consistent poverty have more than doubled on a national basis in the past decade – now at 24%, up from 11% in 2011.
But poverty is only one of the issues that families have to deal with; access to care and education – offering the chance of advancement in life – are also critical problems, as Ann Boland revealed.
Her daughter Margherita is the youngest of five children.
Her family moved from Rome to Galway when she was ten years old. She had no English, so Ann not only needed to find her daughter a school that was able to provide adequately for her, but she needed to learn a new language on top of that.
She got there eventually, and completed a diploma course in NUIG where she was in classrooms and lecture halls with other students who became her friends.
She got into third-level via a programme which still run in Trinity and in Limerick – but is no longer in NUIG.
But that’s just another impediment; and there are countless problems with the system that people with disabilities are thrown into, without choice.
Once they and their carers get used to this system, they are finished school, turning 18 and are on their own once again.
Their parents grow older and neither they nor their parents have the supports to keep up the care they so desperately need as they begin adulthood.
“If we build houses and put them in it, three or four people with roughly the same needs, and give them a housekeeper to check in, overlook the cooking and stay overnight so our children have someone if they need them, then when we’re gone – which will someday happen – they will be prepared for it,” said Ann.
“There will always be a minimum of care needed, and if this is done then it would be very cost-effective for the Government at the end of it all. Whereas if she goes into emergency care, it would cost a lot of money.”
Another Galway mum, Sandra Byrne – whose adult son Karl is on the Autism Spectrum – said that independent living is a huge word that gets thrown around.
“None of us are living independently. I hate that word,” said Sandra, from Salthill. “It’s more assisted living.
“We as parents, when we are no longer here, we want to think that our young person is in a lovely environment, is happy, can go about their day and be assisted by an adult.
“They don’t need constant minding, their needs are not that great, but they do need assistance.”
But the problem with service provision is that there is one staff member for six or eight people – and as none of them are on the same level, they have to cater for those with the greatest dependency, which just doesn’t fit everybody.
Dr Joanne McCarthy is head of policy and research at the Disability Federation of Ireland – and she says that Ireland is the worst country in Western Europe to be a person with a disability.
“There are 643,131 people in Ireland living with a disability. That is more than 13 per cent of the population,” she said.
“The good news is we have solutions – comprehensive solutions. Poverty, unemployment and social inclusion are interrelated problems and the measures that address them must be across all Government departments,” she added.
DFI is seeking a series of key commitments from the political parties, which include an annual investment of over €200 in community services for people with disabilities; providing proper supports for people with disabilities in the jobs market, and addressing the additional cost of disability in terms of jobseeker’s and disability allowances.
“There is also a housing crisis for people with disabilities. Accessible housing, adaption grants, and living supports packages are urgently required,” she said.
It’s a battle they will take to all of the political parties during this election campaign – but they know it won’t be solved by February 8.
As Ann put it: “We’ve told our children they have a right to a future, to living a normal life, whatever is normal for them but the services just are not in place in Galway at the minute.”
Photo: Proactive Carers Galway members Ann Boland (left) and Sandra Byrne. Photo: Joe O’Shaughnessy.
Top ICU consultant slams people who decide not to get Covid vaccine
Deciding not to get vaccinated has been slammed by the Regional Head of Surgery, Anaesthesia and Intensive Care Medicine as “self-destructive” and “selfish” and a move that was causing immense harm to the health services as well as the community.
Dr Kevin Clarkson, consultant in Intensive Care Medicine in University Hospital Galway (UHG) and Perioperative Clinical Director for the Saolta Hospital Group, has described the pandemic for staff as “constant warfare”.
“Day to day it’s extremely difficult to manage theatres, ICU [Intensive Care Units], A&E [Accident and Emergency]. Yesterday we were briefly overwhelmed with critically ill patients on wards, on the ICU itself and operating theatres. We simply do not have the resources to cope. We do manage but it’s constantly like warfare . . . it’s the constant siege and threat that is wearing on people.”
The latest statistics from the Central Statistics Office (CSO) – which includes a breakdown for the first time of vaccination status for admissions to hospital – shows that more than half (54%) of the 136 admitted to ICUs nationally in September and October said they were not vaccinated.
While 7% of the population is unvaccinated, they account for more than half of all admissions to the ICU. Some 62% of the 0-24 age group with the infection in hospital were not vaccinated.
Almost all (97%) of those who contracted Covid-19 in September and October who were admitted to an ICU and were vaccinated had an underlying health condition.
That contrasts with the figure for the unvaccinated – one in three of them in ICU had no underlying health condition.
Around 28% of those who contracted the virus in the last two months and were admitted to an ICU were not born in Ireland. Of these 90% reported being unvaccinated.
Dr Clarkson said these statistics rang true in the Saolta Group.
“We have two presentations with Covid – the unvaccinated and those who are profoundly immuno-suppressed, often with haematological cancers so even though vaccinated they do not have general immunity.
“This cohort have a length of stay in the ICU that is extraordinarily long and they have a particularly high mortality.”
Patients from overseas who were unvaccinated predominately came from central and eastern Europe which had low vaccination rates, the consultant stated.
“They [people who choose not to get vaccinated] have made a very self-destructive and selfish decision that is causing immense harm to the health services and the broader society,” he insisted.
Hospitals have lost as many staff as they have managed to recruit throughout the pandemic. The only way to improve the dire circumstances for patients and staff was a new, expanded hospital with more staff with increased capacity in community care.
“The Prospectus Report in 2008 estimated we needed 40 critical care beds in Galway. We are down one to 13 beds. We were funded for six extra ICU beds in UHG but we can’t recruit to staff them. In addition, the infrastructure is severely limited.
“It can take long periods of time to get patients into ICU but it can take longer to get them out because we can’t get them out to the wards and that’s down to a lack of capacity. There’s the inability to discharge to the community because of the lack of rehabilitation facilities. There’s a need to overhaul flow productivity. The community can turn off the tap, the hospital can’t.
“We need a major new hospital with more bed stock and associated staff, accelerated ability to discharge to the community and we need to build operating theatres – it needs a major new hospital. We’ve not properly invested in Galway for the last 30/40 years, we‘ve had replacements, refurbishments, but very little new bed capacity.”
A total of 1,391 people tested positive in Galway in the seven days until Wednesday and 2,852 in the past fortnight – giving a 14-day incidence rate of 1,105 per 100,000 population – still below the national average of 1,287. The latest figures from the HSE show there were 16 confirmed Covid cases being treated in UHG on Wednesday, as well as one suspected case.
There were two Covid patients in the Intensive Care Unit (ICU) in Galway, and there were no ICU beds available. There were 16 general beds available.
The latest CSO report shows there were no confirmed Covid-19 deaths recorded in Galway in the week ending November 12. Overall, there have been 155 Covid deaths in Galway since the start of the pandemic. People aged 65 and over accounted for half all those hospitalised since March 2020.
Despite the high numbers going for PCR tests, there continued to be same day and next day availability at testing centres at Galway Airport and NUI Galway, unlike large swathes of the country.
Some 7,000 people had gone for testing in seven days at the airport.
Testing at NUIG has been increased from five to seven days providing in excess of 400 additional appointments.
Meanwhile a survey conducted by the Irish National Teachers’ Organisation INTO) found that 2.1% (156) of Galway pupils were reported as testing positive for Covid.
They poll, based on responses from 877 schools, found 3.6% of staff nationally tested positive.
INTO General Secretary John Boyle said the snapshot survey shines a light on a primary education system that is creaking at the seams.
“Soaring transmission levels are an indictment of the premature removal of testing and contact tracing from our primary schools, and of the frustrating failure to move quickly to deploy antigen testing.”
Residents associations urged to get behind new local authority initiative
Residents’ groups throughout the city have been urged to get behind a new initiative which would see the ‘greening’ of run-down alleyways in their area.
In September, the Council launched a ‘Greening the Laneways’ project, with an overhaul of the Rocky Road in Westside.
Now, Councillor Terry O’Flaherty – who came up with the idea earlier this year – has called for communities around the city to follow suit.
“This is an idea I put forward at the February meeting of the City Council’s Climate, Environment Recreation and Amenity Strategic Policy Committee, and it’s been put into action for the first time in the Westside
“Galway City Council partnered with local residents and young people to ‘green’ the Rocky Road in Coogan Park, transforming it into a vibrant, nature friendly-space
“I think it’s a fantastic idea, and I hope that the Westside project will be the first of many all over the city.
“As well as taking the rough look off those alleyways, many of which have really been let go and look very decrepit, it also helps to curb anti-social behaviour and littering.
“I would like to see this initiative spread across the city particularly in the east ward as it would be great to see residents’ associations and especially young children coming on board and taking ownership of the alleyways in their areas,” she said.
Cllr O’Flaherty said that the idea was thought to be a first for the Republic of Ireland, one inspired by a similar initiative she saw launched in Northern Ireland at the start of this year.
For the Westside project, the City Council supplied planters and its Parks staff helped local residents and young people plant flowers, shrubs and an ‘edible landscape’ with fruit trees, strawberry bushes and even cabbage plants.
Locals were also involved in painting vibrant murals on the themes of climate action, biodiversity and anti-littering along the laneway with the help of talented professional artist Lukasz Kryzwon.
Cllr O’Flaherty said that relatively little funding would be required to extend the scheme to alleyways dotted all over the city.
“The costs are not huge and the returns are terrific for everyone — the alleyways which may have been eyesores are turned into things of beauty that everyone can enjoy, and working on the project gives the local community a sense of pride in their area.
“It’s a wonderful thing for children participate in the work from the start, and I can see a situation where schools might get involved in coming up with ideas for their own neighbourhoods, and working with residents in the areas where the alleyways are located,” said Cllr O’Flaherty.
Budget money set aside for study into tidal pools
Councillors have agreed to provide funding for a feasibility study into reopening the tidal pools in Salthill.
During the Galway City Council budget meeting this week, a balanced budget of €103 million for next year was passed by councillors.
Included in this was €44,000 for a feasibility study to be carried out to reopen the tidal pools at Ladies’ beach, which has been described as a “a huge asset to the city” by Council Chief Executive Brendan McGrath.
Support for the reviving of the pools grew legs after an online petition attracted over 4,500 signatures.
Up to 100 of the 518 submissions made under the City Development Plan currently being drafted supported reopening the pools which have been out of action since the late 1970s.
Meanwhile, the four biggest allocations in the budget for 2022 were nearly €39m set to be spent on housing and building; €17m on recreation and amenity and €14m on road, transport and safety and €13m on environmental services.
There was broad welcome from around the table for plans to employ three more community wardens; six additional permanent general operative posts; four seasonal outdoor workers and two housing maintenance staff.
The two key projects earmarked for Council-owned land at the Dyke Road and Sandy Road to create “affordable, residential-led and mixed used development” will also get nine specialists to progress them with the Land Development Agency.
But there was widespread criticism that the City Council continues to be the poor relation when compared to other cities around the country.
Because it has been categorised in ‘Band 5’ since 1991 – along with rural local authorities such as Carlow, Leitrim and Monaghan – its workforce is meant to be capped at 487. Last May it was at 524, with plans to increase that by 30 more next year due to increased projects and pressure on services. But these posts will have to undergo rigorous assessment by the Department of Housing, Local Government and Heritage.
The ‘controlling pact’ of councillors made adjustments of €423,000 to stump up for their own projects. They achieved these savings by cutting the IT budget by €60,000, culling €220,000 earmarked to create a new project management unit to oversee large projects and €50,000 for a tourism promotion fund.
City Hall’s plan to increase grave opening charges to reap €15,000 was overturned as was their recommendation to up the price of using public toilets from 20c to 50c, creating revenue of €23,000.
Their proposal of an €8 per day charge to park in the Dyke Road, Cathedral and College Road car parks was also scaled back to €6.50, which will bring in extra income of €149,000 instead of €298,000. A monthly €100 parking ticket will also now be available for daily users, which will reduce the charge to just over €3 per day.
Among the biggest winners in the revised budget was a feasibility study for the Salthill tidal pools (€44,000); Westside running track lights (€40,000); Greenfields walking path (€32,000) and €30,000 each for the castles restoration project and repairing roads and footpaths in Old Mervue.
The ‘pact’ projects were slammed by out-voted councillors as discriminating against residents on the east side of the city, who make up one third of the population, but allegedly only attracted 10 per cent of these adjustments.
This was rejected by the councillor leading the ruling pact’s budget, Cllr Frank Fahy (FG), who said in fact €105,000 would go to projects on the east side out of the €423,000 even though just one councillor in the pact was from that ward – Cllr Terry O’Flaherty (Ind).
Slamming the cut of €60,000 to ICT, Cllr Mike Crowe said never in the history of the City Council had technology been so important at it facilitated staff to work from home and in an era where cyberattacks had paralysed the Health Service Executive (HSE) and NUI Galway.
He also said the monthly parking charge would effectively take advantage of people who were only worked in the office two or three days.
“Galway City East has one third of the population but the adjustments by the pact equate to 10.5% – €49,000 – that’s 10-11% to be spent on the east. The rest is Galway City West and Galway City Centre [wards]. That’s a reflection of the pact. Last year the east got 18% of adjustments and 31-33% went to other wards…some of these adjustments are at the least very questionable and should be reconsidered.”
Cllr Alan Cheevers (FF) said he found the adjustments “very parochial”. There was nothing to fund improvements in Doughiska, Roscam, Headford Road and Tuam Road.
“We’re elected to represent the people of the city so I believe we should allocate it fairly.”
The budget passed, with just one councillor, Mike Crowe, voting against it. Another vote to alter the 2009 Parking Bylaws to allow for a monthly parking ticket was passed 11 votes to seven.