Lost opportunities for people with intellectual disability in institutional care settings

The institutionalisation of people with intellectual disability in Ireland during the twentieth century was at the time considered a helpful response that would improve the lives of people with intellectual disability and their families. Institutions provided a regime of care that met basic biological needs in a secluded, self-sufficient environment that perpetuated itself- For the individual with intellectual disability there were many missed opportunities for self-determination and community participation. Donal Fitzsimons explains how the introduction of person-centred plans (PCPs) into disability services in recent times brought with it an assumption that the PCP was robust enough to safeguard against the deleterious effects of life in congregate settings.

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A recent study, ‘A case study analysis of Person-centred planning for people with intellectual disabilities following their transfer from institutional care’, examined the lives of ten individuals with intellectual disability who were removed from their families, taken into institutional care and later transferred to live in houses in the community. The research considered the perspective from three sources: the person with intellectual disability, their family member and their key worker. For many of these individuals the priority was that they were removed from family homes and cared for in hospital settings where they were nourished and medicated. They were subjected to the austere and conforming regimes of institutional care. Opportunities for learning were restricted to what could be taught in special segregated settings, often without application to their everyday life. This study found that there were many missed opportunities for the person with intellectual disability to learn the life skills necessary to have an independent life of their own making (see Table 1).

Armed with this knowledge, it is important that when we consider education for people with intellectual disability it is essential to also create a culture of learning experiences that promotes their dignity, while at the same time preparing them for life independence.

TABLE 1: THE LEGACY OF INSTITUTIONAL CARE AND PRACTICES AND LOST OPPORTUNITIES FOR EDUCATION

Person with intellectual disability
— Alienation from family, mainstream education & community life – antithesis of normalisation.
— A loss of personhood & control of their lives.
— Relinquished to patient status.
— Acquiescence.
— Loss of confidence and self esteem.
— Restricted to the menu of special services.
— At the mercy of staff that are paid to be with them.

Family members of the person with intellectual disability
— No control in their family member being taken into care.
— Years later it is assumed that they can re.engage in the person’s life. This leads to confusion, anxiety and fear.
— The concern that if they display any confidence that they will be expected to engage in direct care.
— Afraid to complain or really say what they think.
— Deference to staff.

Key worker for the person with intellectual disability
— Attitude of ownership to people in state care.
— Institutional practices persist in community houses.
— Institutional hierarchy of conflicting roles.

Case study

The following excerpts from a detailed case study of Teresa (pseudonym),
illustrate how vulnerable people’s lives are:

Teresa was born prematurely in the mid-1960s and weighed less than three pounds. This low birth weight placed her at risk of developmental delay. She lived with her father and mother in their small home situated on the outskirts of a rural village. Teresa’s case notes indicate that her parents had 12 children. When she was three years of age she was placed in a large children’s ward, of the local psychiatric hospital. She was placed there because, according to her mother, she was ‘completely unmanageable at home’. When Teresa was six years of age, she was moved to a special residential and education centre under the care of an order of nuns. She was reported as doing ‘reasonably well’ in special school, acquiring very basic academic skills. During this period from 1971 to 1983 she did not have the benefit of normal family life.

When Teresa graduated from ‘special school’ it was envisaged that she would attend a residential rehabilitation programme. However, this did not transpire due to her unwillingness to go to yet another residential facility. Teresa returned to live at home with her family. Teresa reported that she was very happy during this stage of her life. It is noted that she displayed some adjustment difficulties at home which took the form of temper tantrums and acting out aggressively towards others. As a result of these behaviours, Teresa’s parents sought an out-of-home placement for her. Teresa was admitted to a large residential centre for people with intellectual disabilities in 1985. Shortly after her admission to the centre, her mother passed away. Some ten years later her father died, thus making it increasingly unlikely that Teresa would ever return home. Her life became inextricably bound to the formal intellectual disability service provision.

In the large residential centre where Teresa resided there were many institutional practices, such as dormitory style accommodation, central meal preparation and central laundry. Residents were expected to conform. There were set unit meal times, waking times, bed times, shared leisure activities such as viewing the same television programme, going for walks and communal personal hygiene practices. Teresa, while in the large residential centre, made three allegations of an abusive nature. When reflecting on her past life she remarked:
‘I have lived in three institutions and I didn’t like any of them, you would have to share dormitories and I didn’t like the food, you didn’t get out much and there was nothing to do other than do messages for the staff.’

After about a year living in this residential centre, Teresa was removed to a group home in the area. Teresa moved with women that she had been residing with in the large residential centre. Because of the move Teresa now had her own bedroom, participated in meal preparation, and her lifestyle was more conventional. She was also given a day placement in the occupational therapy unit in the psychiatric hospital where she had resided as a child, working in supported employment in the laundry. Initially Teresa got on well in her community residence, but was frequently returned to the large residential centre in response to ‘bad behaviour’.

Teresa currently resides in a community residence, approximately four miles on the outskirts of a large town. She attends a day service in this town on four days per week and an activation unit in another part of the town for the fifth day. Teresa reports that she is now happy in this house and also with her day service. During her day programme Teresa reported that she engages in many activities such as art therapy, reflexology, community inclusion including going for coffee, shopping, using local amenities such as the swimming pool, church or cinema.

Teresa stated that she has feelings of not being listened to, of her voice not having power, views of others being taken as fact whilst her views are discredited in her eyes. When one asks Teresa ‘how are you, Teresa?’ she will reply ‘the staff say I’m very good’ or for instance it is noted that she is in good form, she is likely to reply ‘the tablets are working’ or ‘I went to the doctor and he told me the tablets are working’. This study found that a common feature of institutionalisation was that the person with intellectual disability relinquishes control and responsibility for their own lives and has an over-reliance on medical and nursing opinions.

When Teresa is treated unfairly in a punitive manner she is more likely to engage in acting.out behaviours and that her reputation as ‘difficult’ is fulfilled. Teresa, like many people with intellectual disability, is often seen as being in a state of ‘eternal childhood’ and is treated with strategies reminiscent of the past where children were punished when they were perceived as being ‘bold’. More enlightened protocols around positive behaviour supports can be found in Teresa’s care plan so that she can be supported to have a more self-determined lifestyle rather than within the more restrictive and punitive behaviour management strategies of the past. Teresa does not see herself as being trustworthy or having ordinary entitlements such as a key to her own front door. She states ‘I might lose it.’ Her leisure pursuits are restricted to ‘special’ events. These include attending the local Special Olympics and the monthly parents and friends disco for people with intellectual disability.

When asked if she participated in buying groceries for the house she stated ‘Well, we shop online using the internet for groceries.’ When probed about her participation in this activity she stated ‘no I can’t use a computer. I am not that good at it. I think the staff do it. The food is delivered to the house. It is a great service.’ When Teresa was asked if she participated in preparing and cooking meals in the house she replied:
‘The care assistants do that. We don’t go near it because we are not allowed go near the cooker, we’re not let. I would help to serve out the dinner but I am not allowed near the cooker.’

It is important to view education as a lifelong opportunity to learn, rather than being restricted to a classroom setting … By ‘doing’ with people and giving them the active supports they require, people with intellectual disability are enabled to be capable of full community participation.

When Teresa was asked whether she participated in doing her own laundry, she replied:
‘Well if I was shown how to use it and if I got it started, I wouldn’t mind learning.
I do help by clearing up the table, emptying the dishwasher, bring the clothes off the line, sweep the floor and set the table, things like that.’

Teresa attributes her current level of happiness to the successful role of medication and to her care plan. She states ‘the key worker says the care plan is working’ and ‘the doctor says the medication is doing its job.’ Teresa spoke of herself in an objective way, for example, stating ‘takes me’ and ‘handover’ about herself- She continually spoke of herself in the third person. She referred to her peers as ‘clients’ and states that when she goes on holiday ‘another client goes with me.’ When planning seasonal breaks she describes herself as being at the mercy of her sisters to ‘take’ her home. She describes her brothers as having ‘no interest in my life.’

Teresa also commented that while she is currently happy in her house, she does feel insecure. She attributes this to being moved many times without consultation—even in the recent past she left her community residence one morning to be brought by the staff to a different house. This was done to facilitate another service user who was terminally ill. She said:
‘Well, I had to move to another house the reason being was that another resident was sick. You see they needed a single room for him and I had to give him my room. I didn’t mind, but sure what could I do. I had no choice.’

Teresa described being moved without her knowledge as ‘very upsetting’; however, Teresa made the comment that she is now ‘very happy with her life.’
Teresa’s sister perceived Teresa as now having a ‘wonderful life’. She emphasised the importance of ‘dignity and respect for people with intellectual disability’. She stated that Teresa ‘does not like being spoken down to and that this causes her to get stressed’. She alluded to another community placement where Teresa was unhappy. She was moved there without her knowing to free up a room. This caused great distress in her life and she believed that her sister was ‘heading for a breakdown. She was on anti-depressants and was suicidal. I live in fear that they will do that to her again.’

Teresa’s sister points out that Teresa’s lifestyle is not very Person-centred in that Teresa lacks any real choice in her daily activities. She had some reservations with regard to Teresa’s level of activity. She doesn’t think that she should be told what to do. She stated that Teresa is ‘told to do art, but if she is not in the mood to do art, it doesn’t matter, she still has to do it.’ She remarked that in the past, being sent back to the large residential centre when Teresa became difficult, was ‘not very professional.’ She articulated again, however, a sense of reservation about ‘saying too much’ because of an underlying fear that following any criticism ‘I would be told to take her out’, implying that she would have the responsibility for Teresa’s care if she was critical of the quality of her current service provision.

Conclusion

In summary, this study confirms the imperative of learning from the institutional legacy of the past and the model of care that exists today. It highlights the importance of looking at each person with intellectual disability individually. If Teresa had been given the supports that she required to learn in her own home in her own locality, perhaps her life skills would have developed where she would have been a contributing member of her community. It is important to view education as a lifelong opportunity to learn, rather than being restricted to a classroom setting. Mansell et al. (2009), in their work on Person-centred active supports, illustrate the importance of every moment as an opportunity to learn. By ‘doing’ with people and giving them the active supports they require, people with intellectual disability are enabled to be capable of full community participation.

If society has the courage to learn from people like Teresa, it would equip various stakeholders such as policy makers, government departments, service providers and families with the understanding that institutional practices clearly have limitations that continue to the present day. The desired future is where people with intellectual disability will be seen as individuals, with all stakeholders having a shared understanding and vision in the capacity of the person with intellectual disability to lead full and active lives in an inclusive society that is not defined by, or segregated by, their disability. In keeping with the spirit of New directions (2012) and Time to move on from congregated settings (2011), the imperative is to look at individuals with intellectual disability ‘one person at a time’, in order to turn ‘lost opportunities’ into occasions for lifelong learning.

Donal Fitzsimons qualified as an RNID in 1992. He graduated with a BA (hons) in healthcare management from Athlone Institute of Technology in 2003 and graduated with an MBA from Coventry University. Donal has submitted his PhD thesis to Trinity College Dublin entitled ‘An evaluation of Person-centred.Planning for people with intellectual disabilities following their transfer from institutional care’. He has held clinical and managerial positions in Ireland and abroad. He is currently employed by the HSE and holds the position of Manager of Disability Services with responsibility for Longford, Westmeath, Laois and Offaly.

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