People with Disability - Coping Strategies

In our experience, and supported by Anne’s research, there are a range of coping strategies that make a difference in the lives of those we support:

• To facilitate a positive attitude, the attitude of key people in the life of the person with a disability is central. Therefore modeling constructive problem solving and adaptation to changed circumstances can assist the person with a disability.
• Valuing the role of the family and other important people in the lives of people with disability. As service providers, we also need to understand that we are impacting on an existing support process and therefore need to understand the critical role of the family and value all they have done…even if it feels restrictive, families have done the best they can and need to feel validated in their role. In addition, as they age, the capacity of family members and significant others to be an active participants in the lives of the person with disability may diminish. E.g. they may not be able to drive. We therefore need to be proactive in keeping these relationships alive. (Bigby, 2008).
• Building positive networks: Physical presence in the community does not equate with social inclusion (Bigby 2008).
  • Formal: It is absolutely critical to have continuity of staff support and therefore workforce retention is an essential part of ensuring quality support and resilience in times of change. Lack of continuity breeds insecurity and can both establish new and maintain existing patterns of insecurity.
  • Strong informal networks providing emotional support, direct practical support, financial assistance and management of relationships are crucial. Functions such as advocacy and monitoring the quality of service require a long-term commitment and are non-uniform, idiosyncratic and not easily replicated by formal services (Bigby, 2008). In Bigby’s study, the average number of informal contacts (people who lived outside their household and who were not paid) and who they say at least once every twelve months was 1.92! Without good networks, people with disability suffer the fact of being ‘Known well by no one’ (Bigby 2008).

  The isolation so many people with disability experience, often without family support, is one of the key factors inhibiting their capacity to deal with change effectively .The Housing Connection’s community development model is critical in forging ties within our local community – with shopkeepers, sports clubs, churches and friends – so that this safety net is there for clients. This is even more important for those with no family or as families age.

• Cognitive restructuring and reframing – so that an event is viewed as positive. (e.g. Debbie’s move to her new home, the positive role of staff and the excitement e.g. around a housewarming party.) Very often people will take cues from those they respect – therefore if we are positive this enables people we support to feel more confident and positive.
• Enabling choice – as far as possible, people need to be in control of decisions that affect them.
• Facilitate opportunities for the expression of feelings and ensure the person, whether or not they are verbal, has the means to let us know what they feel about an event.

  The widespread neglect of the emotional lives of people with intellectual disabilities has led to widely held beliefs that they do not experience grief, that they always live in the present and do not recognize or comprehend loss. Paradoxically, it has been thought that their grief is so great that they should be protected from the harsh reality of severe loss and death. These ideas have been widely refuted and in fact grieving may be prolonged. (Dowling). When losing a parent who is also a caregiver, the person with a disability is potentially losing far more – the person who attends to their needs, understands their communication, who spends much of their time with them and truly values them.

  At the same time, we need to avoid projection – not putting our own interpretation on events. For example, Bessie lived with her mother for over fifty years and was dependent on her for almost everything. She never went on holiday without Mum, never had her own bank account. Though this changed significantly when she came to THC, much of our work focused on dealing with her mother’s control. Bessie was a devoted daughter and when her Mum went first into a nursing home and subsequently died, we wondered how Bessie would cope. The answer was wonderfully – she did grieve but she was also liberated and her lifestyle now is one she could only have dreamed of while her mother was alive!

• Managing stress responses and stress-inducing events. This involves both counseling, providing training in managing feelings (coping strategies) and where possible avoiding unnecessary life changes.
• In situations where it is possible to plan, the development and implementation of a good transition plan is critical – with capacity to respond flexibly. Give the time needed to contemplate, prepare and deal with relapses.

  When change cannot be anticipated such as a sudden death of a loved one, inclusion, information, reassurance, validation of what the person is feeling and empathy and all important tools as well as factual, plain language to explain what is happening. (See Richard West, a young man who was not told his father was dying of cancer). One of the people we support, Justin, was forbidden by his family to attend his father’s funeral. As a result, he was unable to understand what had happened or obtain closure. He wanted to ring his Dad in heaven. Only when he was able to attend a funeral of another acquaintance was he able to have any understanding of what had happened.

• For those who cannot communicate effectively verbally, augmentative communication tools are critical in empowering choice and decision making. (Cameron and Murphy, 2002; Books Beyond Words Publications).

From our experience, the reactions of people with intellectual disabilities to change are as diverse as the responses of those in the general community. We will give the final word to a young man with an intellectual disability: Gary says: ‘I have always believed in myself. I know I can do things.’ (Butler). The least we can do – as family members, service providers, policy makers, researchers and academics – is to ask the people directly and to honour that knowing!

Thanks to Julie Bannerman for research support.

References

Agran, Michael and Wehmeyer, Michael L., 2000, Promoting Transition Goals and Self-Determination Through Student Self-Directed Learning: The Self-Determined Learning Model of Instruction, Education and Training in Mental Retardation and Developmental Disabilities, 35,4, 351 – 364.

Barron, Diana Andrea, Violet, Jo and Hassiotis, Angela, Transitions for Children with Intellectual Disabilities, http://www.intellectualdisability.info/life-stages/transition-for-children-with-intellectual-disabilities, Accessed, 12th April 2010.

Bigby, Christine, 2008, Known well by no-one- Trends in the informal social networks of middle-aged and older people with an intellectual disability five years after moving to the community, 33,2, 148 – 157.

Books Beyond Words Publications, http://www.rcpsych.au.uk/bbw, Accessed 19th April 2010.

Brammer, Laurence M, 1992, Coping with Life Transitions, Eric Digest,

Bramston, Paul and Cummins, Robert A.; 1998) Stress and the move into community accommodation, Journal of Intellectual and Developmental Disabilities, 23, 4. 295 – 308.

Butler, Gary, 2006, My experience of transition from being a Teenager to becoming an Adult, www.http://www.intellectualdisability.info/life-stages/gary-butlers-experience-of-transition, accessed 12th April 2010.

Cambridge, Paul and Forrester-Jones, Rachel, 2003, Using individualised communication for interviewing people with intellectual disability: a case study of user-centred research, Journal of Intellectual and Developmental Disability, 28, 5 – 23.

Cameron, Lois and Murphy, Joan, 2002, Enabling young people with a learning difficulty to make choices at a time of transition, British Journal of Learning Difficulties, 30, 3, 105 -112.

Dowling, Sandra, Bereavement in the Lives of People with Intellectual Disabilities, http://www.intellectualdisability.info/life-stages/bereavement-in-the-lives-of-people-with-intellectual-disabilities, Accessed 12th April 2010.

Frawley, Patsie; Bigby, Christine and Forsyth, Heather; 2006, Why are conferences ‘Sometimes about us, without us’? Journal of Intellectual Disability, 31, 4, 249 – 251.

O’Brien, Patricia; Theseng Avril; Tuck, Bryan and Capie, Angus 2001, Perceptions of change, advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community, Journal of Intellectual and developmental Disability, 1, 67 – 82.

Perry, Jonathan and Felce, David, 2004, Initial Findings on the involvement of people with an intellectual disability in interviewing their peers about quality of life, Journal of Intellectual and Developmental Disability, 27, 2, June, 164 – 171.

West, Richard, When my Dad Died: 2003 A Relative’s perspective, http://www.intellectualdisability.info/life-stages/when-my-dad-died-a-relatives-perspective, Accessed 12th April 2010. Paper first given to a talk to the National Network for the Palliative Care of People with Learning Disabilities (NNPCPLD)

Table of Contents

Related posts:

1. People with Disability as Researchers
2. People with Disability – The Effect of Badly Managed Transitions
3. People with Disability Share Their Experience of Life Transitions
4. People with Disability – Defining Transitions
5. People with Disability Facing Life Transitions
6. People with Disability – Factors Affecting Satisfactory Resolution of a Transition