‘People With Intellectual Disability Have Been Silenced Too Often’

Posted on: 10 May 2016

Professor Mary McCarron is Dean of the Faculty of Health Science and Chair in Ageing and Intellectual Disability at Trinity College Dublin

The Aras Attracta case, which concluded earlier this year, provided us with an opportunity to reflect on what lessons can be learned from the whole saga. 

While lots of issues were raised about staffing levels, standards of care, the role of unannounced inspections, the appropriateness of out of home placements, the impact of budget cuts and the place of investigative journalism, a better starting point is to consider the people with an intellectual disability at the centre of it all.

Poor care happens when the personhood of the individual with an intellectual disability gets forgotten and active, person-centred care takes second place to staff, provider and public expenditure stresses.

At the root of good care – regardless of the setting – are three things: relationship-centered care (ie the relationship between the staff and person), empathy and communication.

Through my work in the field of intellectual disability, I have witnessed excellent services where care and supports are rooted in a strengths-based and relationship-centered care, where love, care, and activities by staff that often go above and beyond.

I have witnessed staff coming in on days off to share special events like birthdays; putting serious thought and effort in buying that special gift; calling in to ask about someone who was ill; visiting and staying with the person while in hospital; grieving at the death of a person they had supported as if it were a close family member.

However all this was sadly lacking in the awful footage that exposed the misdoings at Unit 3 in Aras Attracta. While it was clearly evident that these female patients were desperately trying to communicate with the staff, in spite of their best efforts their pleas fell on deaf ears.

No effort was made to understand these patients; they were treated as non-persons.

A negative work culture was allowed to fester and when you are embedded in an environment – such as Unit 3 at Aras Attracta – people can quickly become desensitized and insensitive caregiving becomes the norm.

Unlike some other homes, Aras Attracta was actually quite a pleasant setting. But this goes to show that throwing money at a problem won’t always fix it. It wasn’t the physical architecture of the environment but more the architecture of care culture that caused this problem in the first place.

I’ve been in fabulously designed places where the care was far from excellent and awful places where the care has been exceptional. So one does not necessarily guarantee the other.

We, as a society, need to tackle continued physical segregation, political invisibility and abuse of human rights of people with intellectual disability.

While community presence and participation is key to this, we must avoid the mistake of thinking that relocation to community-based living arrangements will solve all of the problems that were at the root of this case.

Even in community living, people with an intellectual disability will continue to have the same support and care needs, and the same need to trust in the people who provide that support and care.

As we pursue the public goal of moving more individuals with an intellectual disability from congregated settings to community care, and ask more families to support care at home for their family member with an intellectual disability, we must also ensure that a similar loss of personhood is not repeated.

Individual choice and autonomy to direct one’s life must be a priority for all people with an intellectual disability, regardless of the level of disability.

Changes in the physical environment and new procedures do not translate easily to changes in care culture, public perceptions and care delivery practices.

But if anything positive is to come from this incident it would be that we refocused on the care culture within organisations.

This must start with senior management and go right down to the bottom so that there is genuine, unconditional, positive regard for the personhood of the individual.

There is also work to be done to enhance the nature of monitoring and oversight of care and supports provided. The Aras case and the Winterbourne Report in the UK both emerged from televised exposes.

Inspection approaches must be similarly focused upon what is happening in the day to day lives of people with an intellectual disability as well as the traditional regulatory compliance.

Addressing these core concerns and providing needed oversight in the community is, and will be, both of greater importance and a greater challenge.

For the first time we have a population of people with intellectual disabilities living into old age, and our own work in the Intellectual Disability Supplement to Irish Longitudinal Study on Ageing is documenting this.

The ageing of people with an intellectual disability is a success story that should be celebrated. As is often the case, success can come at a price, and this success story is challenged by the inequities in health and community participation experienced by this group.

People with intellectual disability have been silenced too often; this example illustrates that their needs, desires and rights have been ignored and their place within our society remains to be fully addressed in the national policy agenda. 

We must recommit ourselves and our professions to ensure that the loss of respect and personhood at the heart of the recent case does not happen again.