Practice considerations when working with people with an intellectual disability are often a neglected part of professional education. It could be argued that practice considerations for people with an intellectual disability be including in education about diversity and culturally sensitive practice. The following articles provides some practical and theoretical guidance when working with people with an intellectual disability.
Dodd, P., Dowling, S. and Hollins, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research (49)7. Pp 537-543.
This articles discusses the experience of grief and loss in a person with an intellectual disability. The article responds to debates about the ability of people with an intellectual disability to feel grief and loss or to understand the concept of death. The article argues that people with an intellectual disability experience emotions similarly to others, with differences in communication of these the only difference. There are added complexities in experiencing grief and loss, particularly when the death of loved one results in relocation, changes in day to day routines and complete fracture from previous life. People with intellectual disability who experience the death of a loved one who is a primary carer must then deal with living in a new, communal setting with strangers and unfamiliar routines. Practice considerations discussed in this article include the need to adapt assessments to fit the language of the person, acknowledgement that people with an intellectual disability are not one homogenous group, much information about a person may come from their parties which requires discretion in assessment and that other forms of communication and exchanges such as drawing, photo graphs and physiological responses many be used. The article suggest more research into the emotional responses of people with an intellectual disability is required, as well as a inquiry into the effect on mental health.
Cuskelly, M. (2006). Parents of adults with an intellectual disability. Family Matters(74). Australian Institute of Family Studies. 6 pgs.
This reports looks at the experience of family carers of adults with an intellectual disability, which is termed’ extended care-giving’ in the report. Carers are most often mothers, and do experiences some stressors relating to lack of employment outside the home, worry about appropriate services for their child, experience social isolation, have few resources to manage the need of the adult and experience frustration. This report also discusses the reasons why parents are providing extended ‘care-giving’ including parent or adult offspring preference, companionship and support, lack of appropriate or acceptable alternatives, or the adult offspring provides care for the parent. This article does appear to paint a burdensome picture for carers, but does also provide an analysis of the socio-political context that influences the social structure that shape the way people with intellectual disabilities are supported. The article provides important contextual information about the lived experiences of carers.
Barr, O. (2007). It is not enough to know what do. Journal of Intellectual Disabilities(11). Pp 123-126.
This introduction to an edition of the Journal of Intellectual Disabilities provides important focus points for professionals working with people with an intellectual disability. The author introduces a number of important concepts and considerations when working with a person with an intellectual disability including the need to be aware of and assess emotional and mental health, the necessity of meaningful communication approaches, education of staff and assessment of perceptions and assumptions that may hinder education, evaluation of staff education efforts, evaluation of service provision with the involvement of people with intellectual disabilities and a life span approach to service provision.
Mattison, M. (2000). Ethical Decision Making: The Person in the Process. Social Work(45) 3. Pp 201-212.
This article discusses the necessity of self awareness and reflective practice n ethical dilemmas. That nature of work with a person with an intellectual disability is bound in issues relating to ethics, for example autonomy, self determination and paternalism. The article also discusses the impact of personal values, assumptions and historical ethical decisions impacting upon current and future ethical decisions. As there are many prevalent negative assumptions about people with an intellectual disability, it is important for practitioners to become aware of possible stereotypical beliefs or assumptions and mitigate their impact on ethical decision making.
Rodgers, J. and Namaganda, S. (2005). Making information easier for people with learning disabilities. British Journal of Learning Disabilities(33). Pp 52-58.
Rodgers and Namaganda (2005) discuss the need to make information easier for people with learning disabilities and the wider community in general. The article discusses that making information easier isn’t just about the information contained in the message but also about how the information is transmitted. It is suggested that making information easier requires us to know what the purpose of the information is, and who the audience is. It is argued that the better the audience is know the easier the information can be made. Summarising key points, losing irrelevant detail and find the mist relevant points help in making information easier. Using a range of methods of transmission such as the spoken word, images or written messages will be audience dependent. It is also important to remember that people with an intellectual disability are not a homogenous group, therefore it is necessary to take in other factor of diversity such as culture and gender.
Mitchell, A. and Clegg, J. (2005). Is Post Traumatic Stress Disorder a helpful concept for adults with intellectual disability?. Journal of Intellectual Disability Research(49)7. Pp 552-559.
This exploratory study looks at how helpful the concept of Posttraumatic Stress Disorder (PTSD) is in application to experiences of people with an intellectual disability. The study showed that life events such as the death of the parent/s, abuse, and the removal of children of their care are serious traumatic events in lives of people with an intellectual disability. It was also found that that the participants also experienced the same presentation of symptoms including re-experiencing the event, avoidance of triggers. It is suggested that the PTSD is a helpful concept if the response of both children and adults are combined to take account of the responses of people with an intellectual disability; this is not because be people with an intellectual disability are child-like, but because they experience similar parental attachment and dependence to lack of other relationships and need for care.
The following Healthy Start documents are aimed at those working with parents with an intellectual disability, but the principles and practical tips can adapted to many other fields of practice
Delivering education
Healthy Start. (2009a).Parent Education. Australian Supported Parenting Consortium. Parenting Research Centre and The University of Sydney: Sydney. 8 pgs.
Session plan and structure
Healthy Start. (2009b). Establishing a session plan. Australian Supported Parenting Consortium. Parenting Research Centre and The University of Sydney: Sydney. 3 pgs.
Healthy Start. (2009c). Child Protection. Australian Supported Parenting Consortium. Parenting Research Centre and The University of Sydney: Sydney. 4 pgs.
Healthy Start. (2009d). Checking for understanding. Australian Supported Parenting Consortium. Parenting Research Centre and The University of Sydney: Sydney. 1 pg.
Healthy Start. (2009e). Understanding and Planning Support Assessment and Planning Approach. Australian Supported Parenting Consortium. Parenting Research Centre and The University of Sydney: Sydney. 3 pgs.
And others...
AAMR. (2005). Guidelines for Interviewing People with Intellectual Disabilities- Supports Intensity Scale. AAMR. Washington, USA.
Beart, S. (2005). ‘I won’t think of myself as a learning disability. But I have’: social identity and self advocacy. British Journal of Learning Disabilities(33). Pp 128-131.
Breslau, N. (2001). Outcomes of Posttraumatic Stress Disorder. Journal of Clinical Psychiatry(62) 17. Pp 55-59.
Brown, J., Dodd, K., and Ventere, A. (2009). ‘I am a normal man’: a narrative analysis of the accounts of older people with Down’s Syndrome who lived in institutional settings. British Journal of Learning Disabilities. pp 1-8.
Edwards, N., Lennox., N. and White, PS. (2007). Queensland psychiatrists’ attitudes and perceptions of adults with intellectual disability. Journal of Intellectual Disability(50)1. Pp 75-81.
Ewin, M. (2002). Me Too: A self help guide for parents by parents of a children with disability in Queensland. Author: Brisbane. 92 pgs.
Foa, E., Keane, T., and Friedman, M. (2000). Guidelines for Treatment of PTSD. Journal of Traumatic Stress(13)4. Pp 539-588.
McConnell, D., Dalziel, A., Llewellyn, G., Laidlaw, K. and Hindmarsh, G. (2008). Strengthing the social relationships of mothers with learning difficulties. British journal of Learning Disabilities(37). Pp 66-75.
Norah Fry Research Centre (2006). Providing the Right Support- an evaluation of the North Eastern Parent Support service and Walsall Parents Advocacy service- Executive Summary. Norah Fry Research Centre, University of Bristol. Bristol: UK. 8 pgs.
Smith, I. (2002). Solution-focused brief therapy with people with learning disabilities: a case study. British Journal of Learning Disabilities(33). Pp 102-105.
Thurman, S., Jones, J. and Tarleton, B. (2005). Without words- meaningful information for people with high individual communication needs. British Journal of Learning Disabilities(33). Pp 83-89.
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