The God Squad

The Irish Times – Tuesday, February 2, 2010

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.”