A VOICE FOR THE VULNERABLE – Irish Examiner Special Investigation – Day 1
SHIREEN O’BRIEN, 40, a service-user of the Brothers of Charity services, Dublin, smiles out from the pages of a Japanese newspaper.
Her story is part of a full-page spread in the Asahi Simbun, the second-largest circulated broadsheet in Japan, read by eight million people daily. The newspaper chose the plight of people with intellectual disabilities as one of the most poignant examples of how Ireland has been affected by the recession.
They say you judge a society by how it cares for its most vulnerable. If that’s true, Ireland is a sad excuse for a society, due to constant, vicious cutbacks to services for our intellectually challenged and elderly.
It was the story of the summer. In particular, the HSE cut-backs to services for people with intellectual disabilities sparked nationwide protest marches and acres of media coverage.
Initially, the Brothers of Charity-run Bawnmore respite house, in Limerick, was closed, respite services at the Daughters of Charity Ard Cuan respite centre, Dublin, were reduced, and the day centre at the Daughters of Charity’s new, residential housing complex, in Chapelizod, Dublin, was shut down almost one month after it was officially reopened. Other care services around Ireland were also affected by the cutbacks. But the brouhaha has now abated. The HSE has reinstated services in most of the respite homes, and other care facilities.
So why are many of the parents still upset?
“The politicians would make you believe it’s all sorted out, but it’s not open in the same way as it was before,” says John Moore, father of Georgie, 40, who attends Bawnmore respite house, Limerick.
“It’s not enough for me. I’m still very, very unhappy,” says Kevin O’Brien, father of Shireen, 40, who resides in St Louise’s, Chapelizod.
“I don’t feel it was the same as we were told, and we’re still on the edge of a cliff,” says Judy Curran, whose daughter, Lorna, 11, avails of the respite services in Ard Cuan, Dublin.
“I’m still devastated,” says Ruth Losty, whose twin sons, 17, attend respite in Ard Cuan, Dublin.
The HSE recently gave additional funding of about 1m to the Daughters of Charity. This will allow the continuation of respite services for the rest of this year, but there is no guarantee this funding will be available in 2011.
As a result of this, the respite centre at Ard Cuan, and the Day Centre at St Louise’s have been reopened, albeit on a reduced level. The home-support service for Ard Cuan service-users has not been reinstated.
“The HSE met with the Daughters of Charity at the end of July, in relation to the services provided by them,” says HSE Dublin north east press officer, Ann Martin.
“The discussions focused on their funding for 2010, and, in particular, the need to maintain the provision of frontline services. As a result of these discussions, a resolution was found, which will ensure that there will be no diminution to services provided by the Daughters of Charity in 2010.”
In Limerick, the respite house at Bawnmore has been re-opened on a reduced level, due to fundraising efforts by the parent-run family support group, and a contribution of 50,000 from the Brothers of Charity Services, Limerick.
“This [respite] service will be funded through fundraising, until such time as the HSE will favourably address inequities in the application of funding cuts,” says acting CEO, Brothers of Charity, Norma Bagge.
Deirdre Carroll, CEO of Inclusion Ireland, a charitable organisation that organised the protest march in July 2010, worries about the future prospects for such care services.
“Inclusion Ireland is very concerned about next year’s services, given reductions this year,” says Carroll.
“It is very important that both the HSE and disability service providers come together to find a solution without delay, not only about what is happening now, but also about what will happen next year.
“Inclusion Ireland has been informed, through our members, that reductions have been made in many respite services. This is at a time when respite is most in demand.
“People with disabilities and their families need to have access to quality services, be adequately consulted, and have choice and control over what services they receive.
“Inclusion Ireland has received calls from parents and people with disabilities who are extremely upset and worried about their future,” she says.
THE HSE funding and staffing cutbacks have had a significant impact on Shireen O’Brien (40) and the 53 others at the Daughters of Charity service at St Louise’s Centre, Chapelizod, Dublin. Staff have been cut by 11%. Four vehicles bought by parent fundraising stand idle in the car park, as there is no one to drive them, and the new day care centre was shut down, less than a month after it opened on May 10, when 12 of its 14 staff were made redundant.
Due to increased funding from the HSE, the day centre is due to re-open shortly.
Due to repairs being carried out on her bungalow, Shireen is back living at home with her family. “It’s still not good enough for me,” says Shireen’s father, Kevin O’Brien. “The day centre has been re-opened with only two to three part-time staff, and there has been no change with the staffing in the bungalows. There is only one nurse in each bungalow and one care staff between three bungalows.”
“Staff man hours were originally cut by 438 hours and only 126 man hours have been reinstated by the HSE ... So the level of service is compromised,” says Kevin.
“It will be weeks yet before we see the full effects of the loss of these man hours. As well as the loss of man hours, it is also stated that staff on sick leave, maternity leave, holidays, and so on, cannot be replaced,” he says.
Living in bungalow accommodation within St Louise’s grounds, with 53 other women with intellectual and physical disabilities, Shireen attended the day centre until recently and was flourishing under the care of the staff.
Service users were brought on outings and a self-centred model of care was used, with activities tailored to meet the needs of each person.
“She has become more verbal, since she went to St Louise’s, than she ever was. It’s extraordinary. It’s because of the level of staff, and care, and interaction there. The whole approach there is different to the institutional care of long ago. It’s completely individualised,” says Shireen’s mother, Anne.
“It was a home from home, and, because of the cuts, that will all change. There will be a great change now and it’ll go back to a much more institutionalised type of care,” she says.
Anne, who is the chairperson of the St Louise’s support group, says there has been an increase in challenging behaviours due to the individual needs of service users not being met, and there has been an increased use of sedation.
“I suspect, from now on, that an awful lot of the day will be spent watching TV. There have already been increased behaviour problems and there will be increased sedations, because there will not be enough staff to treat their individual needs.”
Shireen has a mental age of between one and three years old, and severe intellectual disabilities. She suffers from epilepsy, her right arm is disabled and she walks with a limp. Shireen had a normal birth, but suffered a head injury at 18 months and contracted viral encephalitis, which left her brain damaged.
“We were told to put her into an institution straight away. That’s the way it was in those days,” says Anne.
Shireen spends weekends at home with her family and loves to curl up on the couch with her special blanket, go for walks with her father, and eat extra large bags of her favourite chocolates, Maltesers.
“Shireen brings us huge joy and she loves coming home. She is the youngest in St Louise’s. Lots of the other ladies have no parents, and their siblings would have lost touch, and they have no-one to speak for them. We’re going to fight this every step of the way. From the sounds of it, we’ll be on our own this time. A lot of the parents are afraid to open their mouths, afraid it’ll be taken out on their daughters or sisters. But of course, nowadays, this wouldn’t happen,” he says.
GEORGIE MOORE (40) is in charge of the 45-person choir at his local church, in Patrickswell, Limerick. Woe betide anyone who fails to show up for practice, as Georgie will not hesitate to berate them.
“There are no ‘ifs, buts or ands’ with Georgie — if he has something to say to you, he’ll say it. He’s totally honest. He’d tell a priest what he thinks about him, no matter what it is,” says his father, John Moore (76).
Georgie has a mild intellectual disability, and has attended the Brothers of Charity Bawnmore Centre, Limerick, for the past 22 years. He attends day services during the week, and is cared for at home by his parents and sister, Mary, (41). Until recently, he spent two consecutive nights per month in a respite house, but this was abolished, only to be re-instated at a reduced level. “It’s the parents, themselves, who are opening [the respite house] again,” says John Moore.
“Georgie could go on the weekends, before, and it was very convenient for us, but it’s not open in the same way, now, it’s only open on certain days, and Georgie won’t get a date until Christmas. Respite was a break, both for him and for us. We’ll just have to carry on. There are people worse off than me, living alone, and it’s a terrible loss to them. I told the woman who was trying to distribute the [new] dates, for respite, to give it to those who are neediest,” says John.
“He’s very much a home-boy and wants to be at home. We’re delighted to have him at home, but we would like the break, as well.”
John considered respite a tentative first step towards independence for Georgie, who, says his father, has the mind of a teenager.
“In the beginning, he didn’t like respite. But it was a chance for us to get him to break away from us. Margaret and I won’t be here forever and that’s what we worry about. The respite was a step for him towards independence and that’s what’s very worrying. At this hour of our lives, we’ve enough to worry about,” John says.
John’s wife Margaret (80) is in a wheelchair and has little mobility, and they depend increasingly on their daughter, Mary, for help with Georgie. “Margaret and I are old-age pensioners, now. Thank God I’ve a daughter who lives with us, but you can’t burden your only daughter with this, because it would be unfair. She has her life to live. We were depending on respite for when we’re gone,” he says.
The provision of daily, cooked meals for service users at Bawnmore Service has also been abolished. This small change has affected all service users, including Majella Bennis (40), another Patrickswell native, who attends Bawnmore with Georgie. Majella does not like respite, but the catering efficiencies have affected her life.
“The lunches would be the hardest thing for Majella, really — it’s a long day without hot food. Now, she brings a packed lunch and she’s coming home every day, questioning all day long why it’s been done. The smallest things really can be a set back for them,” says Phil Bennis, Majella’s father.
“Now, we have to give Georgie a packed lunch and cook an evening meal. It’s an extra burden. You’d be trying to think of a menu for him,” says John.
John is effusive in his praise for the past services provided by the Brothers of Charity in Limerick.
“When Georgie was born, we were told he would never walk or leave a wheelchair, and, thanks to the carers, he can walk now. We owe these carers the world, and their efforts have just been shot down. It makes me so mad,” he says. Georgie works at Clonmore Industrial Services, a Brothers of Charity-funded workshop that produces wood and steel products. Other activities include cooking, swimming and computer skills. The carers have focused on teaching Georgie independence skills, which culminated in Georgie being able to get the bus independently to his day centre.
“Everyone on the bus loves him. He’s quite well-known and it’s safe for him,” says John.
Besides managing the choir, Georgie also loves watching DVDs, listening to music, and watching hurling matches with his father. His parents owned a shop in the village of Patrickswell for many years, and, as a result, Georgie is well-known in the community.
“Georgie is great. We were so lucky with it, that we live in the village. It’s a very active village. He’s well-known in the community and the community are wonderful. He’s a very outgoing lad, humorous, and people love talking to him. But you can’t leave him on his own,” John says.
With the Dáil still on annual holiday, John and Margaret, along with hundreds of other parents, must simply wait, and hope that no further services will be abolished.
“The biggest worry is if this is only the start of the cuts, what’s down the line? His friends are in the workshop. If that went, that’d be the worst thing in our life, because Georgie just loves going in there to work,” he says.
“We’ll keep hoping that they’ll get back their full services. We’ve spent a good part of the last 40 years fighting for that lad, for services for him. I was involved in the early days with Bawnmore to open it, then things went bad in the 1970s and 1980s. I thought we were finished with all that, and here we are, back where we started. It’s very frustrating.”
“Georgie endears himself to all people, he’s that kind of person,” says John.
“He’s a bit of a character all the same and the house parents [at respite] are brilliant with them. He’s much better in there, for the two nights, than at home, because he does lots there. At home, he’d be sometimes up in his room watching DVDs. I hope common sense will prevail. All the HSE had to do was to look at the way that funds were allocated. Surely, they can cut from any other service, except them. It’s always the sick, elderly and the handicapped who suffer,” John says.
LAST MONTH, Ruth Losty had her first panic attack. She fell down and hit her head, an injury that required six stitches. Ruth says this was a result of hearing about the closure of the Daughters of Charity-run Ard Cuan respite house, Dublin, which her identical twin sons attend six nights per month. Respite services at Ard Cuan were recently re-instated, on a reduced level.
“I’m still devastated,” says Ruth. “Ard Cuan is only open four days a week until the end of August, and, in September, it’ll be closed for two weekends of the month. It’s like somebody came up and kicked you in the face. Without Ard Cuan, I don’t know how I’d cope.” Ruth’s sons, Michael and Darragh (17), have Frederick’s Ataxia, a disability that affects balance, co-ordination and mobility. The twins also have an intellectual disability.
“Respite is very relied on in this house, because it gives the other kids a break,” says Ruth, who has three other children, Stacy (23), Martin (19) and Rachel (15). “I don’t even cook when they go to respite, because that’s my day off,” she says. Both boys have been attending the Daughters of Charity services since they were three years old, and Ruth hopes they will attend the Pathways service when they leave school. They love going to school, and both boys have received awards for an unblemished attendance record.
However, living with twins with an intellectual disability can be difficult, at times.
“You’re watching them all day long. One of them set the house on fire twice. Without my neighbours’ help, I wouldn’t be able to cope,” Ruth says.
“Michael will scream for an hour, a high-pitched scream. It takes three people to sit on him and get his shoes and socks on, because he’s nearly six feet tall. Darragh is milder and he absolutely loves going to school,” she says.
Both boys love going to respite, and will not allow their mother to help them to shave, instead waiting for a favourite carer from Ard Cuan, Stefan, to shave them.
“The Ard Cuan staff are absolutely brilliant. They take them to the cinema, or even just out for a spin up to the airport. It’s the only time they meet up with their friends, because they all live all over the place,” she says.
Ruth and some other parents of children attending Ard Cuan were prepared to make personal donations for respite services to be reestablished, but this plan has proved impossible. Ruth constantly worries about the future of respite, and other services, when the new funding allocations are announced for 2011.
“We’ve thought of every solution, but are coming up against a brick wall,” says Ruth.
“You wake up in the morning thinking about it, you can’t sleep thinking about it, and when you finally fall asleep, you’re still thinking about it,” she says.
JUDY Curran was shopping in Arnott’s, Dublin, recently with her daughter, Lorna (10), and her mother. Lorna began screaming, and a woman standing beside a cosmetics counter looked at Judy and said ‘I wish that child would ever shut up.’ When Judy told the woman that Lorna had special educational needs, the woman unsmilingly retorted, ‘am I supposed to be psychic?’
Lorna has autism and attention deficit hyperactivity disorder (ADHD), and attends the Daughters of Charity St Vincent’s Centre, on Dublin’s Old Navan Road. With the recent HSE cutbacks, Lorna’s home-support service has been reduced by four hours per week. Her one-night-per-month respite service, in Ard Cuan House, was initially abolished, but has been reinstated. “We’re still on the edge of a cliff. Respite has been reinstated, but only until the end of the year,” says Judy.
“I can still feel my face burning from the temper of it. I’m trying to keep as calm as possible, and I’m the mellow one,” says Judy, who arrived home from a recent family holiday, in Spain, to find a letter detailing news of the closure awaiting her.
Both Judy and her husband, Jim, work full-time, and respite is a life-line for the Curran family.
“If we don’t get respite one night a month, we’re in limbo,” says Judy.
“It’s great for a break. It recharges your batteries and I can take my son out on that night. We should be able to have some sort of social life.”
Respite is also hugely important for Lorna, as it gives her a chance to socialise with other children.
“Respite is like a little sleep-over for her and she’s like an angel there, she’s like a different child with them. In respite, she gets on well with all the other kids. The kids on the road don’t really have much time for her, because they don’t understand her. There’s only so much sitting in the house she can do,” Judy says.
Respite provides children with intellectual disabilities with their first taste of independence, away from their families. “It killed me to put her into respite, initially, but I’m not getting any younger, and, at the end of the day, it’s not a case of ‘if’, but rather ‘when’ something happens to me. We want her to get used to life without us, that’s why she goes to respite,” Judy says.
Lorna loves music, dancing and swimming, and recently took part in the long jump at the Special Olympics national games, in Limerick. She is adored by her family, but Judy is honest about the impact that the challenging behaviours that arise as a result of Lorna’s autism have on family life.
“We’re just not able to cope. She can be fine in front of other people, but she pulled the head off me the other day,” says Judy.
“Nobody seems to realise how difficult it is, we’re nearly pulling our hair out. She’s nearly 11 and she’s getting stronger. She lashes out and hits people across the face. She can really scream at anything. My son can’t even take his friends into the house, because she has no friends and wants to hang out with them, screaming and roaring.”
Other behaviours include pulling hair, upending tables in restaurants, and dismantling supermarket displays.
“She does and she doesn’t know what she’s doing. I truly believe that autism is a chemical imbalance — it’s a glorified name for brain damage. She doesn’t understand the hurt that she’s doing, really. There’s no feelings, really,” she says.
Lorna needs assistance in every area of her life.
“My husband has to get her up in the mornings, because she can’t wash or dress herself. She totally goes against him and she screams the place down. He’s trying to get to work, as well, and it’s awful to start your day completely stressed out. It’s very difficult on a relationship, as well, no-one understands how tough it is,” Judy says.
The Currans keep the kitchen door constantly locked, as Lorna is a compulsive eater. And her bedroom door must be locked at night, with the key kept in it, in case of emergencies.
“When you’re dealing with that on a constant basis, you have to get a break,” says Judy.
“Without respite, there’s no-one to turn around to and say ‘will you take her’?”
“It’s the thing that goes through every parent’s mind, ‘what’s going to happen to her?’ I don’t want my son to do it. He’s very much involved in it and he had to grow up fast. He puts up with an awful lot,” Judy says.
“We deserve better than this. Since she was young, we’re fighting, fighting, fighting, it’s a constant battle. We’re not marching the streets for nothing. Her right to a normal life has been taken away. I believe, if the HSE gave more money, they would reinstate everything.”
MY name is Stephen and I’m a 14-year-old boy living with a sister who suffers from autism and ADHD. Life is very hard having a sister with special needs — it’s all about Lorna.
The mornings are always a struggle in our house, as it’s Lorna’s way or no way. She dictates when she gets up, how she gets washed, and even the way I eat my breakfast. If I go against Lorna in the slightest way, all hell will break loose.
I have often gone to school upset after Lorna has slapped me several times, and the constant screaming gets in on me. This is not a nice way to start the day. It all depends on Lorna how peaceful or disruptive the morning will be.
The only peace I have during the day is when I am in school as Lorna is home when I arrive home. We have to keep the kitchen door locked constantly as Lorna would eat all day if given the opportunity.
Lorna restricts where we go and what we do as a family. For example, if we go some- where and Lorna has a tantrum, this may result in us having to leave.
I have missed out on my childhood due to the fact that Lorna wants constant attention from me, as she has no friends.
When I have my friends in the house, she is constantly in on top of us, and wanting to do her thing by turning on a DVD and watching what she wants to.
We also have many good times with Lorna, eg, when we went to Limerick to see her participate in the Special Olympic National Games. I love Lorna very much, even though I find it extremely difficult to live my life through hers.
This is why respite is a great benefit to my parents and me. It means I am treated like a normal 14-year-old, and can do things a normal 14-year-old would do.
Even though we only receive one night a month respite, which has now been cut, I looked forward to having it as it gave me time alone with my parents. Lorna also benefits from respite, as it is the only place where she has a few friends. Lorna has progressed greatly with the services she has been receiving in her school, St Vincent’s.
In my own words, these are great and badly needed services for users and their families, which are being cut.
This is my story as I live it.
Comment: Siobhán Cronin
EIGHT years before my arrival in the Cronin household, my mother gave birth to my brother Tommy. Within months, she realised she had a special child. But it took years of campaigning to have him diagnosed, as she had suspected, with profound autism.
It wasn’t until after her death that I realised just how much campaigning she had done, not just for herself, but for the thousands of other parents of special needs children. Or how much the state had forced her into that position.
Going through her papers one night almost a year after her death, I came across a collection of yellowed newspaper cuttings, held together with a rusty bullclip.
But this unassuming bundle of papers held her dreams and hopes for my brother.
The paper trail revealed a sustained campaign by my mother, herself a busy housewife already with five other children, who brought the issue of autism to the forefront of public debate through the letters pages of the Examiner, Irish Press and Irish Times, and correspondence with academics, doctors and ministers.
The health minister’s private secretary, in one newspaper letter, refers to “mentally ill children, including autistic children” — an ignorance my mother was all too aware of, as she fought to keep my brother from the psychiatric hospitals — the only option being offered to her at the time.
The heartbreak in her letter of June 21, 1969, to the Irish Press is palpable: “We have been promised accommodation for our children on the waiting list of the one and only unit for such children in Ireland,” she wrote, in her customary style of including all parents of autistic children in her battle. “Now after two or more years we have received a notice to say our children cannot be accommodated in this hospital because we are living outside Dublin.”
Her letters to and from various institutions and politicians are a poor reflection of the State’s response to Ireland’s intellectually challenged citizens. Many of her letters included promises of a place for Tommy at this school or that clinic. All of these came to nothing in the end.
It was not until several years later that the Brothers of Charity in Bawnmore came to my parent’s rescue and Tommy was given a place in a beautiful new residential care unit of smart, modern bungalows at the site in Co Limerick. But that was almost 10 years after my mother had started her campaign to get help for him.
It breaks my heart that parents today are still battling the same ignorant system, and that the state sees no injustice in cutting back services which parents have fought so hard to get in the first place — services which should be a natural right.
Although they weren’t obliged to, Bawnmore agreed to keep my brother Tommy at their wonderful facility long past the age of 18, but the future of the service was a constant worry for my mother.
When Tommy passed away several years before my mother, she took some small solace in the fact the rest of us would not be burdened with those worries after she was gone.
Delving further into her letters and clippings I found another great tragedy. Mum had been corresponding with a woman in County Cork whose son was also diagnosed as autistic. She had written a very long, heartfelt letter to Mum in July, 1965, offering her support and advice and telling Mum she would get through the dark days, and not to give up hope, because she had managed to get through it herself. She also explained how her family had been affected by her beautiful but often disruptive son, and in particular her husband, who had found it very difficult to cope.
She included a beautiful picture of her playing with her son on a swing with a handwritten note on the back: “Please keep this one to remember us.”
But underneath the letter was another clipping, this time from the Cork Examiner, dated exactly a month later, with the headline: “Father and Son Die in Car Plunge.”
I knew the names before I read the article. It must have upset my mother greatly, just weeks after getting such an uplifting letter.
We can’t begin to imagine the fear and torment that had gone through that man’s mind before that tragic incident, all because his family were the innocent victims of a cruel and uncaring society.
How little has changed in this country in those 45 years.
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