Disabled, abused and neglected

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.”

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Categories: Disability Issues

13 replies

  1. It’s like people with mental disabilities in this country being afraid to admit to it because of the social stigma attached. The same applies to suicide statistics in this country; they have always been under reported because of the stigma attached to that and also because it would invalidate any insurance due to the victim. What a backward nation we still are. The cubs of the Celtic tiger must have been gobbled up by the parents!

  2. The current Ombudsman, (Emily O’Reilly) in her journalistic days at the inception of the Redress Board referred to it as ‘A MASS GRAB BY THE LOWER ORDERS’! The mask slipped big time that day Emily – huh? Any wonder you don’t take my calls or answer letters asking for an apology for your vulgar crassness! Who needs this Ombudsman? What constructive legislation has she instituted for children? Zilch!

  3. A very powerful response Ed and a very powerful on too. What is it about this nation of ours that in Ireland we continue to relegate people with disabilities to the bottom of the social pile. I know this due to my own almost life-long disability and from being cast to the very margins of society to be pitied, patronised and prayed for. That’s no good to me. I don’t want any of it.

  4. How true Frank, how true and how terrible. Being disabled is according to the Catholic Church a “punishment for sins committed in a previous life”. MMMMMMM I wish I could remember what awful sins I’d committed.

  5. The idea that people with disabilities should be hidden away is based on Catholic Church preaching. It’s based on their obsession with sex as being evil going all he way back to Augustine of Hippo. I still remember as a child visiting my grandmothers where Aunt Molly was kept in a darkened backroom because she was in a wheelchair.

    When you remove anyone from the community the community is incomplete and poorer for it.

  6. Oh, yes, Paddy, I realize the great difficulty in “persuading the government” (and, I would add, its armies of “contractors”) that people with disabilities should live with their families or in local communities. However, I think it is essential that we do not essentially support their self-interested reasons for locking people up. We here are FAR from a model situation, but we have gone from about 250,000 in State institutions 35 years ago to about 35,000 now (population base 300+million). We now have over 10 States that have NO institutions at all (so the old, “Well, some people NEED institutions because they are too disabled…” argument is long gone). Important here is also the fact that our Supreme Court has ruled that the institutionalization of people with disabilities can constitute discrimination under civil rights law.
    So, even if we begin to create “zones” where kids can grow up in families and adults can live locally, we demonstrate that there is a much saner and better way to do things. And, it almost always costs less (although I understand that money is no object when the goal is to segregate people with disabilities). Just some thoughts…

  7. You’re right Bernadette, this is an issue close to my heart. All of us who work in the field of abuse of children in institutions must now focus on those vulnerable people who don’t have a voice such as we have.

  8. While I agree with you Frank, there is the other point that needs to be made and that is that people with disabilities are treated like they were stupid. Also the vested interests do not want to shift the emphasis of disability from the medical model to a social model. The latter would ensure the integration of people with disabilities into ‘mainstream society’. As Ed Burke said, posting on this website, there is no good reason for keeping people in institutional care. It seems to me, the vested interests take priority over those people who have disabilities. Paddy.

  9. I absolutely agree with you Ed. There isn’t any even half good reason for keeping people with disabilities in institutions. The difficulty arises when one tries to persuade government of that fact. It’s so often forgotten that ‘disability’ has become an industry employing hundreds of thousands of people around the world. These people have a very obvious interest in maintaining the status quo and protecting their jobs. Paddy

  10. “Wherever vulnerable people are detained, an imbalance of power exists between those detained and those holding the keys”

    Never a truer sentence spoken. We need a properly funded Ombudsman to restore balance.

  11. The article misses the point entirely: people with disabilities (especially children) shouldn’t be in “residential institutions” or “placements” in the first place. The money spent on this should be provided to their families or community members to provide support right in local communities.

    There is no such thing as a “good” institution. All the suggested approach does is provide jobs to armies of abuse monitors. We have learned this very painful and expensive lesson in the States over the past 40 years or so.

  12. As always the root of the problem is the fact this country is run (sic) by a bunch of Catholic Gombeen men more intent on feathering their own nests than doing the job they get paid to do.

  13. It’s about time this issue was properly raised and investigated, though I know Paddy that this is an issue close to your heart which you raised many, many years ago. I am now more determined that ever to ensure that unannounced inspections should be the rule – rather than the niceties of announcing visits in advance – and we all know the outcome of that system. We need to push hard for this -now that it is in the public domain again.!! How slowly – some people learn.

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