People with intellectual disability are likely to have support from family members, paid workers or other significant people in their lives. Family members and other support people often know the person very well and are best placed to observe changes in their behaviour and well-being. Their opinions and observations should be taken seriously.
Family members and other support people can often offer useful information and clarification in situations where the client has difficulty providing detailed information. There is evidence to suggest that clients with intellectual disability will best respond to therapy when they have the support of family or paid staff to apply what they have learned with the therapist in real-life settings (Hayes, 2007).This requires the therapist to collaborate with the client’s support people. It may involve allowing support people to accompany the client to sessions, supporting carers to develop the skills and understanding required to create and support change for the client, and helping carers and paid workers to develop helpful attitudes that will allow change to occur (Hayes, 2007).
Carers and supporters can help the therapeutic process by:
- Helping the client to practise the skills learned in sessions and apply the lessons from sessions to the ‘real world’
- Observing what has and hasn’t worked well for the client in the ‘real world’
- Creating opportunities for success for the client
- Helping the client to recognise and celebrate positive change
- Learning new ways of understanding and interacting with the client to support positive relationships
- Teaching others (e.g. teachers, friends, workmates) ways they can support the client to maintain positive change.
Privacy and consent
Involving family members, paid workers or other significant support people in the client’s therapy will require careful consideration about issues of privacy and consent. It is important to find an appropriate balance between the client’s right to privacy of their personal information, and the need to share information with others (including family members, support people or other service providers). The benefits of sharing information can include promoting understanding, increasing safety and working together to achieve the client’s goals.
It is useful to approach confidentiality issues as areas for negotiation (O’Driscoll, 2009). This means discussing confidentiality on a regular basis, exploring what it means, and discussing what kinds of circumstances would break it. It also means having an awareness of the people and relationships in the client’s life, both professional and personal, that can help the negotiation process and ethical decision making. Discussing confidentiality directly with family and supporters can help to reach a shared understanding. (For more information, see the section: ‘Confidentiality’.)
Keeping the focus on the client
When the counsellor and the client invite others to be part of a team to support change, it is important for everyone to understand that the client is the focus of the counselling sessions. When powerful family members and significant others are invited to be part of the process, it can be difficult to maintain this focus – particularly when others have their own experiences of the problem. If dominant voices share the experience of the problem, take time to explore whether the problems experienced by the support people are, in fact, experienced by the client.
Building the capacity of the support team
The capacity of families and carers to support therapy and create and support change may vary. It is important to consider the context of the client’s support. Who are the significant support people in the client’s life? What skills and experiences do they bring to the situation? Do they need help to develop any additional skills or understanding to be able to support the client in therapy?
Be realistic about what can be achieved and refrain from putting any unnecessary pressure on anyone involved. If the counselling involves working with a parent – who is currently caring for their child, running a household, working and dealing with other issues in their life – that parent’s capacity to offer support in counselling may be significantly diminished. Asking them to take on further responsibility may be unrealistic and only set them up for failure.
The capacity of paid support workers can also vary significantly, depending on their level of training, type of supervision, the way they see their role, and the way their role is defined by the organisation they work for. It is important to be aware that paid support work can be a high-stress profession, particularly in organisations that may not have adequate training and supervision of staff (Hatton et al., 1999, in Willner, 2006).
It can be useful to distinguish between the support people who have a lasting commitment to the client and who are there ‘for the long haul’, and those who may be in other roles (such as paid staff) where their support is likely to be restricted and less enduring. This distinction can help counsellors to understand the capacity and limitations of various support people.
To develop an understanding of the client’s support context, counsellors may need to spend time with the significant support people in client’s lives (with the client’s permission), to develop an understanding of how the support people see the problem and to understand their capacity to offer support around the therapeutic process.
Understanding the impact of carer and supporter attitudes
The attitudes of ‘significant others’ in the client’s life can have a significant impact on their carer’s propensity to actively support positive change. When counsellors enlist the support of family members, paid staff and significant others in supporting therapy and positive change, they need to explore the attitudes that support people have towards the problem, the client and the therapy. While some carers and family members are optimistic about the client’s ability to change, some may doubt this or reflect pessimism about the ability of people with intellectual disability to benefit from psychotherapy (Willner, 2006).
Whether or not a carer is motivated to help the client can depend upon their perception of the client’s problem. For example, if a support person or carer believes that the client is in control of their negative behaviour, or if they feel that the difficulty being experienced by the client is something that has always been a problem in their lives, they may feel less sympathetic towards the client’s experience of the problem and pessimistic about the usefulness of therapy. In contrast, if the support person feels that the client lacks control over their negative behaviours and the problem is something that is either recent or occasional, they are more likely to feel sympathetic towards the client’s experience of the problem and more optimistic about the possibility for change (Willner, 2006).
In some circumstances, it may be important to consider the possibility that support people may subvert the client’s therapy (either consciously or unconsciously) due to the threat the change may bring to their own role (Willner, 2006). Even if a support person is negatively affected by the client’s problem, their fear of the unknown or fear of change may influence their support or capacity to support change.
If support people have problems that influence their ability to support the client, it may be advisable to explore what options are available for them to receive support or supervision outside of the counselling sessions with the client. They may need assistance to deal with the impact in their life of changes in the client’s life.