WALK (formerly Walkinstown Association), a community-based, not-for-profit organisation, providing services to people with intellectual disability and challenging behaviour, has no institutional legacy. However, the majority of individuals who attend WALK have either endured homelessness or institutional life within psychiatric hospitals, prisons and intellectual disability institutions. The majority of these individuals are supported by WALK because they present with severe challenging behaviour which can result in physical harm either to themselves or to others, and therefore they require specialist intervention.
WALK provides a model of service delivery which is non-aversive and Person-centred and has successfully supported individuals through the trauma of deinstitutionalisation. This model has an average success rate of 89% in the reduction of challenging behaviours that are presented by individuals within the service and it has been recognised as a best-practice model through both national and international quality accreditation.
Institutionalisation in Ireland
Data from a census carried out on behalf of the Health Service Executive Working Group on Congregate Settings has identified that there were still over 4000 people with disabilities living in congregate settings of more than ten persons in 2008. This raises a critical question: What are the consequences for people with disabilities who continue to remain in institutional settings?
The personal cost of enduring life within a locked ward
According to Emerson et al. (2001), the consequences for people with disabilities in institutional settings has been a reduced quality of life. People who live in long.stay institutions, segregated from society, lose their individual and social identity, which complicates the presentation of mental health and behavioural problems (Hubert and Hollings 2006). This explains the critical importance of having services that can provide specialist interventions that can emotionally support an individual through the trauma of deinstitutionalisation.
Deinstitutionalisation: The role of community and voluntary organisations
The 2000 government White Paper on supporting voluntary activity recommends the community and voluntary sector as an ideal vehicle for delivering services to people with disabilities in Ireland. The emergence of service delivery being provided by local, smaller services supporting children and people with disabilities in the community has been seen as one of the most important shifts in social services in some Western countries in the past 30 years (Bigby and Fyffe 2006).
The mainstreaming of disability services requires not only government commitment but a heavy dependency on the ability of community and voluntary organisations such as WALK to provide specialist services to people who have spent the majority of their lives within locked wards or with restrictive pharmaceutical or behaviour management practices.
Deinstitutionalisation for people who present with challenging behaviour
In intellectual disability services, the trauma of institutionalisation has been acknowledged as an important factor in the presentation of aggressive and violent behaviours (Pitonyak 2004).
Ireland’s traditional practice of deinstitutionalisation has been to re-house individuals who did not have complex needs into the community first. The individuals who remained in the institutions were more likely to present with challenging behaviour; these individuals are often more difficult to re-house (McDonnell 2010).
A rationale for this may well be LaVigna and Willis’s claim that institutionalisation can often be seen as a solution for people who display challenging behaviour. Barriers to these individuals being re.housed within the community may include both the behaviour challenges the person presents, as well as the ineffective support strategies that have traditionally been employed to remediate the challenges (LaVigna and Willis 2005).
If deinstitutionalisation is to occur in Ireland for the cohort of people who present with challenging behaviour, then specialist organisations like WALK must deliver effective leadership that can support a person’s safe transition from institutional to community life. This transition requires careful and effective planning and execution and is reliant on the organisation’s frontline managers, to mobilise their teams to action (Goleman, Boyatzis and McKee 2002).
The trauma of deinstitutionalisation, coping with challenging behaviour, having an intellectual disability and trying to regain some understanding of the life that exists outside a locked ward should never be underestimated. Professionals supporting individuals with challenging behaviour should always be aware of the kind of experiences, traumas and possible abuses that people in locked wards may have endured during their harsh institutional regime (Hubert and Hollins 2006). In essence, an individual may communicate their distress through challenging behaviour; the inability of a care worker to effectively diffuse an escalating situation could potentially cause re-traumatisation (Pitonyak 2004).
A solution to the damage caused to individuals by institutionalisation
In order to achieve positive change in the lives of individuals who have lived, or are living, in locked wards, leaders within the voluntary and community sector must reconfigure their own thinking (Kaiser, Hogan and Craig 2008, Abbott and McConkey 2006, Mansell et al. 2008). Creating positive relationships that are trauma.informed and underpinned by respect and equality are essential components in supporting individuals who present with challenging behaviour to cope with a new life within a community setting.
WALK recognises that the fundamental steps in reducing challenging behaviour are the ability of its leaders to:
— foster positive attitudes among their staff team,
— encourage and mentor staff members in forming interpersonal relationships with the individual that reflect respect, courtesy and concern,
— alter factors in the environment that escalate an individual’s stress levels, thereby creating a safe haven where violent behaviour is prevented from developing,
— recognise triggers or possible early warning signs of challenging behaviour,
— provide consistent and effective staff responses to incidents of challenging behaviour,
— understand the perspective of the individual with challenging behaviour, and
— facilitate the achievement of the delivery of high quality services.
WALK recognises that the complexities of providing services to people with severe challenging behaviour who have been institutionalised necessitate having staff members who can look beyond short-term interventions and understand the potential long-term impact on individuals. They also require the ability and sensitivity to recognise human issues and to act on them in an effective and appropriate manner (Freshman and Rubino 2002).
The introduction of consistent and positive interventions with service users in WALK has an average success rate of 89% in the reduction of challenging behaviours. While the trauma caused by institutionalisation should never be ignored, effective positive, low-arousal strategies can:
— open access to community life for persons who have previously been either denied or limited in their community access,
— guarantee the individual that the use of punitive measures and restrictive practices such as physical or pharmaceutical interventions in the management of challenging behaviour will not be tolerated and is considered by WALK to be a breach of an individual’s human rights,
— result in significant reductions in injuries to the individual, carers and family members,
— significantly increase an individual’s quality of life,
— increase the individual’s levels of autonomy and self-confidence,
— empower the individual to take back power and control over directing their own lives, and
— create a significant reduction in the cost of the individual’s service delivery.