Maeve Kennedy was worried. Her brother Eamonn, who is mildly intellectually disabled, had just been admitted to hospital from the care centre where he was a resident.
Hospital records show his body was marked with bruising and lacerations to the head.
She was already concerned about the medication he was on; he seemed increasingly unsteady on his feet and listless when she saw him.
While Eamonn had a quiet and gentle side, he also was prone to impulsive and occasionally violent behaviour when under stress.
“It seemed to me that he was being chemically restrained to make it easier to control his behaviour,” says Ms Kennedy. “I raised these concerns but I wasn’t getting satisfactory answers.”
Clinical notes show the drugs he was being prescribed included olanzapine, an antipsychotic used to treat major mental illness. Because of its tranquillising properties, it is sometimes used as a way of managing the behaviour of people with challenging behaviour.
An independent report Ms Kennedy commissioned from Dr Séamus O’Reilly, a consultant in emergency medicine, suggests the falls may have been linked to the combination of drugs Mr Kennedy was being administered.
Dr O’Reilly also concluded that some of the bruising on his body was “suspicious of non- accidental injury” and was likely to have been sustained in attempts to restrain him.
Some time later, a highly critical inspection report into the care home where he was resident – Redwood Extended Care Facility in Stamullen, Co Meath – revealed incidents of chemical restraint that had not been notified to authorities.
In addition, there was concern over the use of physical restraint at the centre along with a failure to routinely assess or review lengthy episodes of challenging behaviour.
In a statement to The Irish Times, the operators of the centre – the privately-owned Talbot group – said Redwood declined to comment on the case. It said it was committed to using only "evidence-based, non-aversive support strategies that respect the dignity, privacy and rights of all residents".
In line with best practice, it said Redwood actively strives to minimise the use of all restrictive practices and aims to “provide an individualised, person-centred ethical service”.
Psychotropic drugs
Just over half of people with learning disabilities living in residential centres are being prescribed powerful psychotropic drugs, new research indicates.
Much of this drug use is appropriate in cases where it is being used to reduce symptoms in the treatment of conditions such as anxiety, depression or psychosis .
But, against a backdrop of spending cuts and staff shortages, psychologists and other care workers who work in the disability system describe a culture in which the drugs are often used to control the disruptive behaviour of the people with conditions such as autism.
A growing body of research shows behavioural therapy and person-centred support is the most effective way of changing such behaviour and improving residents’ quality of life.
But the scale of drug use indicates many health professionals are opting first for psychotropic drugs, which do not address their underlying problems and can be harmful in the long run.
"We regularly get family members who tell us they see their sons or daughters overmedicated and unresponsive," says Paddy Connolly of Inclusion Ireland, the umbrella group for people with intellectual disabilities.
“They’re driven by the needs or staff or timetables, but not in the best interests of people. This is a serious issue, it’s a human rights issue, but it’s not being taken seriously enough by authorities.”
Psychiatrists and psychologists say symptoms such as disruptive behaviour are best treated through behavioural therapy and one-on-one support.
Dr Ian Grey, an adjunct associate professor of psychology at Trinity College Dublin, says there is scant research to support use of these drugs in the treatment of challenging behaviour.
Recent studies, for example, indicate that the use of some psychotropic drugs is less effective than placebos when treating behavioural problems.
“Behaviourally-based interventions are the most evidence- based approach we have to dealing with challenging behaviour,” Dr Grey says.
“It reduces this kind of behaviour and improves quality of life.”
But what does this involve? He gives an example of a young man with challenging behaviour he encountered recently.
Every morning at school the boy was given wooden blocks to sort out. After a time, he began biting the skin between his thumb and index finger so hard it would bleed.
In some cases, he might have been prescribed medication. But when they looked at his behaviour, the team realised he absolutely hated sorting out the wooden blocks, day after day.
“It was his one way of saying: ‘I don’t want to do this.’”
A key problem, however, is that behavioural interventions involve more time and resources.
“We’re not seeing resources put into training staff,” says Dr Grey.
“The easy option is to take a pill and you don’t have the workload. To implement behavioural intervention properly, it means placing more demands on staff.”
Chemical restraint
Under care regulations, any use of drugs for “chemical restraint” must be notified to the health watchdog, the Health Information and Quality Authority. But some professionals feel the scale of the practice is greater. Hiqa found multiple cases last year, for example, in which
care homes had failed to pass on this information.
For campaign groups such as Inclusion Ireland, concerns around medication raise much wider issues over consent and bodily integrity.
Thousands of people in residential centres and other settings end up having decisions about their lives and care made for them, not by them.
Decisions such as what to eat or what they may spend their money on, as well as very serious decisions such as what invasive health procedures they should have.
The fact that many people with intellectual disabilities are labelled “lunatics” under 150- year-old legislation says everything, says Paddy Connolly.
“This facilitates a system that takes away a person’s right to make their own decisions about their lives. This system condemns people to a status of non-citizen,” he says.
“We need to move away from the paternalistic stance of looking after what we decide are people’s ‘best interests’ and move towards recognising a person’s right to make decisions about their own lives, and to enable them to be supported to make decisions.”
The Government has pledged to introduce a new capacity Bill, which introduced supported decision-making mechanisms for people with intellectual disabilities. It was published almost two years ago but has yet to reach committee stage in the Oireachtas.
“Successive governments have failed to replace this law with modern human rights- compliant mental capacity legislation,” says Connolly.
“Now is the time to repeal the Lunacy Act and introduce the Assisted Decision-Making (Capacity) Bill without further delay.”
CASE STUDY
Linda Kletzander
says her son Anthony (26) was always a people person.
“He’d be involved in the church, the library, the gym. He’d go and dine in the local universities and public places. He loved visits from us, the whole family,” she says.
Anthony was living in the community in a form of supported living, with personal assistants to help him with aspects of daily life.
“It was exactly the kind of life he wanted to live, with the kind of independence that any young man in his 20s would treasure,” Linda says.
When funding for his placement was cut, she says the family was left with little option but to put him in residential care.
She says she told management at the centre that he was highly sensitive to medication. But within a short period of time in residential care, she adds, he ended up being hospitalised after having an adverse reaction to drugs he was administered. It happened on at least three occasions, she says.
“He was a different person on them. I would hardly recognise him sometimes. He’d be spaced out and dribbling,” she says.
“He’d be telling them he didn’t want any drugs. He was constantly asking us to get him out so he could have his own life back and be with the people he loved.”
The longer Anthony spent in residential care, the more frustrated he became, particularly given that many staff weren’t trained to communicate properly with him.
The more he reacted or vented his frustration, his mother says, the more she worried that he might be chemically restrained to control his behaviour.
Now, after a long-running campaign, Linda says Anthony is finally due to return to supported living in the community.
“There’s a bungalow for him close to the family, and he’ll have personal assistants. All of them will be given full training to communicate with him, a vital ingredient for Anthony to direct his own life with the support he requires.”
