It is my experience that trust, real trust, that is essential to the therapy process, has always been something that has taken some time to build up with this client group, due to the years of having their information indiscriminately passed from one staff member to another and the belief that I am just another person who will do this.
“I hate my file, it only ever says the bad things I do and never says anything about any of my good days, it makes me not trust anyone as anything I say goes in that damn thing.“
I have been lucky enough as a psychotherapist in private practice to work with a lot of men and women who have intellectual disabilities and this opening quote has come from that work. Something that is continually coming up for my clients in recent times is their ‘fear of the file’ and the desire to have it destroyed by any means possible. Services that support adults with intellectual disabilities in residential settings have begun to pay this area a significant amount of attention due to the presence of HIQA and its standard that ‘Each individual has a file’ (Standard 19.4).
It is my experience that trust, real trust, that is essential to the therapy process, has always been something that has taken some time to build up with this client group, due to the years of having their information indiscriminately passed from one staff member to another and the belief that I am just another person who will do this. As a result of this phenomenon, therapists such as myself have dedicated themselves to the task of trying to find ways to assist persons with intellectual disabilities to find their voice and share their inner worlds, through the various safe mediums of psychotherapy. To date I have always managed to find a way to build this element of the relationship but am finding this increasingly difficult due to the new rigorous HIQA requirements and the silencing nature it is creating among the intellectual disability community.
Due to their dependence on others it can be difficult for adults with intellectual disabilities to express their anger in constructive ways about these things, and so the silence is created. McCormack (1991) tells us that we are most handicapped when we are powerless, and conversely, overcoming handicap involves overcoming the obstacles to empowering oneself- One client I am currently working with has reported feeling like a “puppet on a string” and holds the belief that “staff have too much control over my life”. Another client recently told me that “I don’t feel like a priority in my own life anymore” and went on to draw a self-drawing with no legs and no face. When the picture was explored, that person told me how having no legs represented the feeling of being stuck when it comes to the service and the demands imposed to be good “for the files sake” and the omitted face represented the loss of self-identity felt in the process.
So why is any of this important? It is my strong opinion that the lack of trust towards those who are paid to support this client group and the damaging affects their silence and anger can cause, will serve only to set them back 30-40 years, rather than help them move forward as is the intention of the new legislation and standards being rigorously adopted by services across Ireland.
I feel it important at this point to highlight that this article is not being written to find someone to blame for this phenomenon, whether they be frontline staff, senior management or the policy makers themselves. I am writing this piece to shed a light on an Irish culture which has become obsessed with documenting, to the extent that the time that needs to be spent on empowering, and most importantly listening, to our clients is being forgotten. The crux of this article and what is being highlighted is my observation of the emotional neglect of individuals with intellectual disabilities taking place in 2015-policy-driven Ireland.
What I have seen through my work with clients with intellectual disabilities is that the new standards and policies seem to be under-appreciating the need to pay attention to the emotional life of those being supported by services. Professionals in the field of intellectual disability often seem reluctant to treat and investigate emotional difficulties, preferring to concentrate on service planning and development, de-institutionalisation and the modification of behaviour (Arthur, 2003), as is currently happening in Ireland.
It is my belief that there is a need for two things to happen in the modern day service to overcome this. Firstly, a refocusing of attention back onto the relationship between staff and the clients they support is needed, with an emphasis on using the relationship to focus on a person’s emotional life, rather than priority being given to fulfilling paperwork standards. Secondly, a creation of space within services where all staff can meet monthly with an external facilitator, in order to process some of the effects of the work on them (Cottis, 2008), as in order to be open to our clients’ emotional lives, we must be aware of our own difficulties when facing them.
Research suggests that providing psychological consultation to staff responsible for the care and support of people with learning disabilities facilitates emotional development, improves staff–client relationships, decreases symptomatic behaviour and helps improve quality of life (Arthur, 1999), and it is this which has been lost in our policy-driven culture. I hope this short article has redrawn attention to its need.