Clashing cultures of freedom and control

DARACH Murphy was devastated when his brother Seamus, who has a mild intellectual disability, was admitted to a closed ward at St Ita’s Hospital in Portrane, a north Dublin suburb miles from his home in Glasnevin.

Seamus’s behaviour had over time become challenging as he did not have suitable services near his home, and increasingly, his elderly parents could not cope.

At the time, almost eight years ago, Seamus was working as a labourer with his older brother. Darach was worried about him, though he never believed it would lead to his placement in the residential home where he has lived since.

St Joseph’s disability service provides for 350 clients throughout Dublin North, 250 of whom receive residential care. About 150 people receive a residential service on the grounds of St Ita’s Hospital, and this is where Seamus, who turned 40 last month, continues to live — no longer on a ward, but in a house with about six others.

“Seamus was taken with no warning and placed in a locked ward in Portrane. He was frightened, alone, and didn’t know what was going on,” Darach says.

“The system looks at people like Seamus through a lens and deems that they are either incompetent or dangerous. That is the assumption from which they work and upon which everything else is based.”

However, others within the family believe Seamus’s care is more than adequate at St Joseph’s.

One of his sisters contacted this paper to put their views across, saying others in the family feel happy with Seamus’s treatment in Portrane and feel the doctors and nursing staff have restored quality of life to Seamus, who was left without any services after leaving school.

She said they are grateful to the services for the wonderful work they have done over the years, and continue to do. They believe Seamus has a well-rounded life at St Joseph’s with a full programme of activities and is happy in the service.

Conversely, Darach feels the experience has been “horrendous” and he unashamedly questions every decision made in his brother’s name.

For the outsider, it is difficult to understand how such opposing views could come from within the same family, but an extreme clash of cultures appears to be at play and the two simply cannot reconcile.

Darach does not feel it is enough to have a relationship with his brother that involves picking him up, taking him out for a few hours, and then dropping him back again. He wants a full and integrated life for his brother — which is not to say his sisters do not, there is just a diverging view of how this can be achieved. Letters from within the service seen by the Irish Examiner show that a previous psychiatrist in the service called Darach’s demands “enormous” but added that he is happy he is actively participating in the care of his brother.

However, the doctor further states that Darach is not Seamus’ next of kin, and suggests he should, in future, direct his issues through the next of kin (the parents) and the team will respond accordingly.

Given the differences of opinion, this of course would be very difficult for Darach.

In order to try and fully understand his brother’s condition and the situations it presented, Darach began studying psychology at Trinity College. Now qualified, and a PhD candidate, he believes there is a culture of control at St Joseph’s that simply cannot allow for a normal life. He says it is a profoundly sad experience to watch his brother being deprived of regular human experiences.

Among the situations which Darach says have arisen over the years were Seamus not being allowed out of the hospital grounds at various times — on one occasion it was to vote — not being allowed full access to his mobile phone or bus pass, and not being allowed to have a television in his room.

To bring his brother on holidays to a different country with his own family, Darach had to name a doctor in that country “for liaison purposes”, and there were doubts about whether Seamus would be allowed to go at all.

A more recent example of what he calls “the strict regime” within the service is that Seamus was discouraged, and almost prevented, from taking a course at Trinity College, a course which he had secured a place on through an interview process.

Darach persisted, however, and had his brother assessed by an occupational therapist who found he was fit to travel independently. Seamus now attends the course, a certificate in contemporary living, three days a week at Trinity College.

But thanks to Darach’s persistence, things have become easier in recent times. He says he does not necessarily blame the staff at St Joseph’s — who indeed have been commended by several reports on the work they do with residents — but the system as a whole, and its inflexibility.

“At first, I came up against a stone wall and at every turn I felt as though I could not have a meaningful relationship with my brother.

“It took four or five years to break down that wall and it was pure assertiveness and confronting that attitude that has got me where I am, but although it has changed for me and Seamus, for others it has not.”

Darach’s challenges to the system have obviously meant conflict with staff and many complaints were made against him. This culminated in an official accusation of being abusive to a staff member. Darach disputed this though he admitted being short with a nurse who questioned his intentions about taking his brother out for the day.

After the hospital investigated, he got a letter telling him it had been outlined to him what would happen if he continued to disrupt and upset staff — this being that he would be removed from the grounds of St Joseph’s.

With this hanging over him, he sought an independent review. A comprehensive examination of the case and subsequent report vindicated Darach and it was recommended that the allegations against him be withdrawn. In his report reviewing officer spoke about the “opposing views” within the family which would have to be “managed and controlled”.

A visit to Portrane takes you about 25km outside Dublin to a tiny coastal village near Donabate. Set on about 200 acres of land, it is a lonely desolate place. Public transport to the service is irregular and takes hours from Dublin and the facility itself is set a good distance from the town down a long entrance. The driveway up to the old Victorian building is lined with houses, many of which are boarded up. The sprawling grounds house the old asylum, now almost fully decommissioned, several houses where residents live and a brand-new development, called Knockamann, just metres from the red brick hospital, with 10 compact bungalows for about six to eight people, and a day resource centre.

The house in which Seamus lives on the other side of the campus is old and unbecoming. His room is not in a great condition.

Inside the old hospital itself, there is an air of desertion as just 15 people remain here on a temporary basis while their new home is refurbished.

Wide corridors with peeling paint give a sense of the institutional regime Darach takes about, and poses the question, although the hospital is almost closed, does the culture it bred remain?

Metres across the grass lies the €16 million Knockamann facility, which opened last year after years of campaigning by a family and friends group, the St Joseph’s Association.

But although it is brand new, there are concerns that this is just another “mini-institution” and that it flies in the face of international best practice which has moved on from this model of care.

Indeed, it was a somewhat incongruous sight to see residents inside this new day centre stapling hundreds of cardboard vegetable boxes together. But is this really a suitable model of therapy in the 21st century?

Noelin Fox, a PhD candidate at the Centre for Disability Law and Policy at NUIG, believes there is a real danger that in moving people from large institutions to alternative grouped living arrangements, especially where these are located in close proximity to existing institutions, we are simply creating new institutions that replicate many of the features of the old ones.

“The challenge facing us is how do we take account of the real wishes and needs of people with disability who have been institutionalised for many years and ensure that they can lead the lives of their choosing in the community. A first step in this must be providing access to mainstream housing in the community.”

According to Christy Lynch of KARE, established in 1967 by parents and friends of children with an intellectual disability, this country is very late coming to a policy of de-institutionalisation.

Furthermore, he said, families may not accept that moving people back into the community is the right thing.

“But as a state we have to pay attention to all the evidence and make a decision on what produces better outcomes for people,” he said.

“Decisions might be unpopular and some families will not be happy but these people have waited too long.”

Eamon Tierney, chairman of the St Joseph’s Association for the Intellectually Disabled, believes the developments at Joseph’s are all positive: “For too many years, people were left in highly inappropriate accommodation with no psychologist or occupational therapist, now we have them so things are very positive. Nothing is perfect and there are still issues but we feel there has been a big step forward from where we were.”

However, Darach sees things from a different perspective, and many of his views are supported by a recent EU report. The European Committee for the Prevention of Torture inspected St Joseph’s and expressed concern that many of the “so-called” voluntary residents were de facto detained. “They lived in a closed unit and were not allowed to leave the institution without prior permission,” the report said.

The delegation also noted a significant number of incidents of inter-resident physical assault and of residents on staff. Between January and July 2009, 153 incidents of physical assault were reported.

The report also revealed that a member of the clergy had come forward and admitted he repeatedly indecently assaulted a resident. To date, no further information has been given to family members, although it is understood judicial proceedings are under way.

Deirdre Carroll, head of Inclusion Ireland, the National Association for People with an Intellectual Disability, called it a “shocking revelation”.

“These are most vulnerable people. You would expect that families would be informed, but this just highlights what can happen when there are no regulations in place for residential facilities. If you have no regulation and inspection, it leaves a fertile ground for abuse to take place,” Ms Carroll said.

Although a separate inspection report from last year noted that the level of care and treatment afforded to residents was of a high standard and that there was “commitment and dedication” from staff in carrying out such care and treatment, Ms Carroll believes there are “serious questions” to be answered around the “detention” of St Joseph’s residents.

“Although technically they are voluntary patients they are not treated as such and are not free to leave. This is down to the failure of the Government to provide capacity legislation and until there is, vulnerable people will not be afforded the full protections they need.

“The only reason we know what is going on at St Joseph’s is because it falls under the remit of mental health inspectorate. There are so many other places which have no inspections.”

The model of care at St Joseph’s, and indeed services in general, relies heavily on medication. Statistics from the inspector of mental health’s report for St Joseph’s shows that 60% of those on medication are on benzodiazepines, which include anti-anxiety medications such as Xanax or Valium. Almost 80% are on anti-psychotic medication and almost 40% are on more than one anti-psychotic.

Dr Brian McClean, a psychologist with the Brothers of Charity said: “There is no international evidence that a second anti-psychotic medication has any more therapeutic main effect than a single anti-psychotic medication, but every evidence that the sedative side effect increases.

“Even worse than the over-use of anti-psychotic medication is the widespread use of anti-anxiety medication. These are short-acting drugs like Valium and Xanax. They are used as sedatives. They are only licensed for short-term use, yet many people in large residential settings are on high doses of these medications for many years.

“There are at least three problems with this. The drugs withdraw from the body rapidly, often causing hangover, irritability and withdrawal effects. And these drugs are highly addictive, which means that even though they are doing no good, people would be very distressed if they have to come off them.”

Darach feels very strongly that Seamus does not need to be on medication, but more importantly it is all about giving his brother choices, allowing him to make them and then supporting him.

“Seamus has great abilities, he is smart and he knows what he wants. And it is very healthy mentally and psychologically for him to make his own choices. I want him to be able to ask questions and get answers, that should not only be the way for me, but for him too.”

Darach admits: “Seamus certainly has improved since he came to Portrane as he had gone downhill prior to that... But it was the way in which he was taken, and that he has remained there so long. When Seamus was first taken to Portrane I cried for a week, I just couldn’t understand what had happened. I was grieving and didn’t know what to do. All he wants to do is go home.”

According to Darach, many of the residents talk about “going home”.

“If there was a palace in Portrane with everything Seamus ever wanted in it — a snooker table, stereos, CDs — he would not move there, he doesn’t want to go anywhere except home.

“Seamus certainly has no emotional disability, he is well able to feel real human emotions.

“I know I wouldn’t like to live in Portrane, I wouldn’t like my kids to live there, I don’t want Seamus living there and I don’t believe he wants to live there either.”

HSE encourages prior notice before visits

ST Joseph’s Intellectual Disability Service provides services for 350 clients throughout Dublin North, 250 of whom receive residential care and 100 of whom receive a service in their own home. Some 150 people receive a residential service on the grounds of St Ita’s hospital across 18 clinical areas, which includes a new development called Knockamann, and 100 people receive residential services in the community across 13 houses scattered throughout the Fingal region.

The opening of Knockamann means people have moved from living in wards in an old Victorian asylum unfit for purpose. However, according to the HSE, 15 people remain there, waiting for their permanent home to be refurbished — which should be completed by the summer.

Although a psychologist and an occupational therapist have been appointed to the service, the HSE confirmed that the psychologist post is part-time.

The Irish Examiner put to the HSE Darach’s assertions that it is sometimes difficult to take Seamus out.

A spokesperson said it is not a problem for any service users to have visitors without prior notice. “However, we encourage visitors to indicate their intention to visit to ensure that the person they wish to visit is not away at day service or off socialising and avoid relatives being disappointed when they arrive to find no one to visit after travelling out. However, impromptu visits happen all the time,” the spokesperson said.

There does seem to be a different rule when going to someone’s room.

“With regard to going to a client’s room it must be acknowledged that each person residing in a house here shares their home with the other residents that live there. Prior to any visitor having the opportunity to progress unescorted through the house — particularly the sleeping areas of the house — staff would typically check that other service users are either out or that their room doors are closed or whatever measures are necessary to preserve their dignity and ensure respect for their privacy,” the spokesperson said.

“It would be considered a common courtesy for any visitor to ring the doorbell and alert staff to their presence and their intention to carry out their visit in the person’s own room, thus allowing the staff to afford the same courtesy to the other residents in the house.”

The HSE made it clear that it was not happy that a journalist had visited the premises without being informed.

When asked why this was a problem, the HSE responded that “where a person is visiting a HSE premises in a professional capacity, they are obliged to produce a copy of their public liability insurance”.

The Irish Examiner has never previously been asked to produce public liability insurance for staff visiting HSE premises.

The HSE also asked the Irish Examiner to ensure that Seamus had given permission for his name to be used in the article. Seamus told the Irish Examiner he was happy for his name and picture to be used for the purpose of this article.

Promises of change have yet to be delivered

IN 2007, a working group was set up by the HSE to develop a national plan for the transfer of people with intellectual disabilities from large residential homes to ordinary living in community settings.

A comprehensive report, Time To Move On From Congregated Settings: A Strategy For Inclusion, emerged which makes far reaching recommendations about how services should evolve in the future.

Set to be published by the HSE, it contains some disturbing findings that will no doubt cause controversy within the sector, not just for the services themselves but for families of the people who use them.

The picture that emerged was of a group of people who live isolated lives apart from any community and from their families, with many having no contact with relatives for months on end or longer.

Many experience institutional living conditions where they lack basic privacy and dignity. Most have multiple disabilities and complex needs.

It tells a tale of people who are out of sight, out of mind, hidden and forgotten.

The report concludes that all institutions for people with intellectual disabilities should be closed down over the coming years because they are in breach of residents’ basic rights.

According to Brothers of Charity psychologist Dr Brian McClean, the results of the report are “profoundly shocking”, and speak of the state’s continued neglect and its complete failure to regulate this sector.

Large residential settings are living arrangements the primary purpose of which is the provision of services to people with intellectual, physical or sensory disabilities where 10 or more people share a single living unit or where the living arrangements are campus-based.

More than 4,200 people live in 72 such settings around the country.

According to Dr McClean, for the most part, and according to all research conducted, these people live “appalling lives”, especially in comparison to groups of people with similar needs who continue to live with their families.

“In particular, they are vulnerable to abuse and are regularly assaulted by fellow residents. Yet often the argument for their ongoing incarceration is to maintain their safety,” he said.

Inclusion Ireland’s Deirdre Carroll says current policies give her little hope that things will change anytime soon. Although promises have been made in the programme for government, they have been made before and come to nothing.

“People will continue to be forgotten and live their lives in these places where they live and die, these are people who had very little chance in life anyway,” she said.

“We need a massive commitment from government. Services need to be individualised and the funding needs to follow the person and not the service.”

The HSE is developing a national plan, based on best international practice for transferring people with an intellectual disability from institutionalised settings to live independent lives in the community.

But while the number of people left in old institutions is relatively small, the rate of progress in moving them out has been very slow.

“Unless there is a real committed attempt to give complete support to a new model of care, it will not work,” Ms Carroll said.

“There are a lot of people who do not require a high level of care and they could be managed within the community. But there is a real lack of transparency and there is a defensiveness within the services when things are questioned.

“The model of care is a medical model, you have people on high levels of medication which they do not need to be on, and it is not doing them any good.”

Speaking specifically about St Joseph’s in Portrane, Ms Carroll said many of the residents at St Joseph’s do not have family contact.

“They were profoundly disturbed and were brought to St Joseph’s where they have remained. Their parents are older, and sometimes there is no one who comes to see them.

“For those who do, you would expect that family can just drop in when they want without it being a problem. It is their home after all and as long as it doesn’t upset other people then there should not be a problem,” she said.

Ms Carroll also expressed serious concern at activities being carried out by people at a new day resource centre on the grounds of the old hospital. Here, residents were seen stapling hundreds of vegetable boxes together. She said she was “very surprised” that this kind of activity still goes on.

“I know that this went on in the past but I am very surprised to hear that it still is. If people are able to work or do activities it should be something meaningful and enjoyable. I would like to know if those people are getting paid for doing that.

“We realise that people cannot hold down full-time work but at least they should be doing something relevant and enjoyable, with some sort of progression.

“I would like to know are they being paid the going rate for this and if so, where does the money go?”

Another issue is the lack of transparency in the services related to resident’s money.

Their disability allowance automatically goes to a central fund or bank account and after charges are taken out, they can be left with very little money.

“It is not clear how resident’s money is held and distributed, but they do not control it themselves and there is a central fund which is used and doled out if and when staff see fit,” Ms Carroll said.

“It is argued that those who can manage their money should do so on their own but this doesn’t seem to happen.

“Most people are asked to sign over their money. Technically parents can take over control, but services don’t like that. And if people do have an account it is very difficult for them to access it.”

There is still no mandatory inspection of residential disability services.

National standards were published in 2008.

The Programme for Government states that statutory standards and inspection of disability services will be introduced, and junior minister with responsibility for the sector Kathleen Lynch says the Government is committed to addressing the issue.

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