02 February 2010

Irish Times

Disabled, abused and neglected

In the first of a two-part series, Chief Reporter CARL O’BRIEN reports on the uninspected and unregulated State-funded care of disabled people. It is fertile ground for abuse and neglect

INTELLECTUALLY disabled people are at a higher risk of abuse than almost any other category of person. They are far from family. They may not understand what’s happening to them. Even if a family member suspects something, many fear retribution or losing a residential placement.

“Anyone in institutional care is vulnerable,” says Dr Margaret Kennedy, an expert in abuse and disability. “But people with disabilities are the most vulnerable.” Research backs this up. A major study in the US indicates that disabled children are between two and three times more likely to suffer abuse or mistreatment.

There is one proven way of helping to prevent abuse or mistreatment: independent inspections and careful policing of standards. Yet, unlike any other form of residential care in the State, homes for the disabled are not subject to independent inspection. As a result, more than 8,000 adults and 400 children with disabilities live in State-funded care that is uninspected and unregulated by the State.

“Many learning-disabled people have effectively been warehoused in Ireland, and largely forgotten by the community,” says Dr Kennedy.

For almost a decade there has been talk at Government level of introducing mandatory care standards and inspections. The Health Information and Quality Authority (Hiqa), which inspects nursing homes and children’s homes, has put together a document on how residential standards would operate.

When it last considered the issue a year ago, Minister of State with responsibility for disability John Moloney said the Government did not have the funds to introduce them. Instead, he said, care standards would be brought in on a voluntary basis.

“There are lots of good services out there,” says Deirdre Carroll of Inclusion Ireland, an umbrella group that represents people with intellectual disabilities and their families. “However, there are also poor services, which we’re very concerned about. We’ve become aware of lots of complaints and allegations.”

Internal Health Service Executive (HSE) figures show the scale of these complaints. More than 500 official concerns over care and treatment were recorded over a period of more than two years, from 2007 to March 2009. They range from issues over lack of communication and poor living conditions to allegations of abuse, assault or mistreatment.

In one case of alleged physical assault at a centre Co Cork, a staff member was removed from the area where the resident was based following an investigation by a complaints officer. In another, an abuse allegation in Co Leitrim prompted investigations by social workers and the Garda.

The records do not always show the outcomes of investigations. For example, in Co Mayo an allegation of abuse against a staff member was investigated. While it was agreed to ensure that the standards of care were improved, it does not show whether the staff member was disciplined or not.

THE HSE SAYS that under the Health Act (2004) it is obliged to have a robust complaints policy in place. It says it has worked with service providers to ensure service users are able to register complaints and have them addressed appropriately.

“Given the quantum of services provided to people with disabilities, there may be a range of complaints differing in nature at any point in time. Processes are in place to ensure that the HSE is aware of any serious complaints, and it is fully briefed on the nature of these complaints along with any action taken,” the HSE said in a statement.

The taxpayer – via health authorties – provides more than €1 billion to community and voluntary services to provide residential care for people with disabilities.

The HSE says that in new care contracts – or service level agreements – it will make it a condition that service providers comply with the new Hiqa residential standards.

Brian O’Donnell, chief executive of the National Federation of Voluntary Bodies, which represents about 60 organisations that provide care to the intellectually disabled, says its members are fully supportive of standards and inspections. The majority, he says, have some form of voluntary standards in place already. But he concedes there are also services that would fail standards immediately if they were enforced tomorrow.

“Not everything is rosy in the garden. We could always do with more investment. There are services which no one is proud of: institutional and congregated settings. There are improvements, though, year on year,” he says.

Wherever vulnerable people are detained, an imbalance of power exists between those detained and those holding the keys. In the absence of robust care standards or frequent inspections, residential homes will continue to remain fertile ground for abuse, mistreatment or neglect.

So says the Inspector of Mental Health Services, Dr Patrick Devitt. He has underlined how important these safeguards have been in psychiatric care in recent years. More than detecting abuses and unsafe practices, he says, inspections can also provide constructive feedback to those who deliver services.

“These findings should act as an educational resource, promoting cross-fertilisation of progressive and innovative ideas and practices,” he wrote in the latest annual report.

Prof Jim Mansell, who has authored a number of landmark reports for the UK government on this issue, agrees that independent oversight is crucial. “This kind of appraisal is an essential safeguard,” he says. “Over and over again we have seen services where it has been possible for staff to do the most dreadful things – even though they believe they are well motivated.”

JEAN WRIGHT KNOWS the value of robust standards of care more than most. “My childhood wasn’t very good,” says Wright, who has spent most of her life in a Dublin institution for disabled people. “I think as a child we were used like slaves. We had to wash floors, prepare the dinner. The education wasn’t good.”

She has recently moved to supported accommodation near Peamount in west Dublin, which has transformed her life – so much so that she wanted to take part in an advisory group in drafting new standards of residential care for Hiqa.

“In the old place, we had to share a big dormitory. We had no privacy. We all lined up for baths, one after the other, to get in and get out. I had 30 years of that,” she says.

“The standards are important. They make an enormous difference to your life. Now I feel like a normal person. I can do my own cooking and baking, I can shop for my own clothes.”

“It’s important to fight for your rights, and not to have people threaten you. One staff used to threaten me terrible when I was young. Now, I can complain if I need to. I am very happy here. I have my pet dog, Bunny. I have my good days and bad days, still, when I think of the past – but I am very happy.”

INSTITUTION PROFILE

'The abuse that happened in the past was horrendous' 

EIGHTEEN MEN have been investigated in connection with allegations of abuse against 21 children with intellectual disabilities at Brothers of Charity residential units in Galway over 33 years.

A report by Dr Kevin McCoy dealt with allegations of serious abuse at the Holy Family School in Renmore, Galway city, and the Brothers of Charity Residential Services in Clarinbridge, Co Galway. It highlighted a failure to protect and promote the rights, welfare, dignity and well-being of children and young people with intellectual disabilities.

“I was surprised by the lack of inspections and standards,” says Dr Margaret Kennedy, a UK-based expert on disability who trained staff at the centre for three years up to 2003. “It seemed to be 10 years behind the UK and 20 behind the US.”

Anne Geraghty, the current chief executive of the Brothers of Charity in Galway, says the organisation has implemented the recommendations of the McCoy Report.

“The abuse that happened in the past was horrendous. The service has taken every opportunity to unequivocally apologise and has done everything possible to ensure we have robust policies and procedures in place to ensure it never happens again.”

She points to new care standards at the organisation, which go beyond basic care, aiming to fulfill the “hopes and dreams” of those in care, and to include them in the decision-making process.

The spotlight remains on the organisation. The Irish Human Rights Commission is finalising an inquiry into the quality of life of residents at one of the Brothers of Charity’s other facilities, the John Paul Centre in Ballybane, Galway.

It is understood that a HSE review into care at the centre two years ago highlighted the need to review some care practices.

CASE STUDY: BRENDAN 

'He did dirty things to me' 

BRENDAN doesn’t say much. When he does, his speech is slurred and difficult to understand. But he’s aware of everything that goes on around him.

“That’s the problem,” says his sister, Bridget. “He’s moderately mentally handicapped. If he was severely, he’d be better off. He wouldn’t be so aware of what happened to him in the past, the effect it had on him. It’s destroyed his life.”

As a young boy, his parents were advised to place Brendan in a special residential school in Cork. “He was a happy little chap back then, and very much part of the family,” recalls his sister. “Then, over time, we noticed him getting very aggressive. It was so out of character. He came back from there on the minibus, and we were told he’d threatened to kill the driver.”

His behaviour continued to deteriorate. The frustration would build up inside him to the point where he’d fly into a rage, becoming abusive and aggressive to everyone around him. He developed a hatred of authority.

Brendan was placed in a succession of unsuitable and inappropriate services, each more restrictive than the last. At one point he was put in a psychiatric hospital to control his violent outbursts.

Today, after many years, he’s finally in a place he and his family like – a community setting with four others. He has individualised care. He’s more contented and loves to see his family.

As well as being happier, he has started to open up. He has told his family, tentatively, about the serial sexual abuser at the residential centre in which he stayed as a child; how he lived in terror of repeated abuse; how he felt he couldn’t tell anyone.

“He did dirty things to me. He stuck his private parts up my bum. It was very sore. He did it to the others as well, in the spudhouse. If I wouldn’t do it with him, he said he’d throw me in with the pigs.”

He told a consultant psychiatrist as part of an assessment recently.

“It was in a galvanised shed. I saw him do the same with others when I was looking through a broken window. Lots of people knew about him and the awful things.”

There were more recent sexual assaults, too. He had been assaulted by another service user – with a known history of sexual offending – at a sheltered workshop run by health authorities.

“We couldn’t believe it,” his sister says. “It accounted for everything: his behaviour, his frustration. Everything. We were told nothing.”

The psychiatrist’s report says Brendan has suffered multiple traumatic effects of sexual abuse, including cognitive and behavioural problems, and notes he has never been able to form a trusting relationship with the opposite sex.

His sister puts its more bluntly. “He’s not really a survivor,” she says. “His life has been destroyed by this. He had such great potential, but he’s been ruined by it all.”

WHISTLE-BLOWER 

'I was branded a troublemaker. I felt my integrity was in tatters' 

BRIDIE COX worked as a nurse in the disability and mental health sector in the UK for 30 years, but when she returned home to Co Clare a few years ago to continue her work, she was shocked at the standard of care.

“It was like going back in time,” says Cox of the first institution she worked in. “Lots of the work was just task-oriented: cleaning rooms, making beds, feeding residents. It was an approach I’d last seen about 30 or 40 years previously in the UK.”

What was most disturbing was the mistreatment. She says she witnessed over-sedation of patients, physical abuse, bullying, intimidation and neglect. Yet, she insists, her claims were never taken seriously.

“I saw all sorts. I saw an elderly man being pushed and shoved around, kicked up the backside. There was verbal abuse of residents, too. I remember one was told, ‘If you don’t straighten up, you won’t fit in your coffin’.”

Rehabilitation of residents was virtually non-existent, she says, as there was no meaningful therapeutic intervention. Worse still was the attitude of some members of staff towards vulnerable residents.

Cox made a number of complaints, which her managers said were unfounded. When she followed up these complaints to the highest level at HSE head office, the files were lost, she says. When eventually it was dealt with, she was told again that her complaints were no longer valid.

“I wasn’t even interviewed myself. How they could determine that, I just don’t know. By that stage a lot of the staff had left. They were changing some of the practices at the centre following my complaints. But I was branded a troublemaker. I felt my integrity was in tatters,” she says.

Cox also worked in Cappahard Lodge in Co Clare, a residential home for older people with dementia or mental health problems. It has become part of the psychiatric service in recent times. It was heavily criticised by the Inspector of Mental Health Services.

While some services have moved clients into community settings, says Cox, many institutionalised practices remain.

“You still have residents queuing for baths, for their pocket money or cigarettes.”

She left on grounds of stress, dejected and disillusioned with the system.

“The biggest problem is that people are willing to turn a blind eye to what’s happening. That’s the culture. They aren’t willing or interested in change, even though that is so much more rewarding both for staff and residents. I tried to change how things were done, but you can’t do that on your own.”

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