‘Using goals in clinical practice with children and young people with learning disabilities, their parents/carers and networks’ is written by Clinical Psychologists Ro Rossiter and Heather Armstrong. It is taken from the document ‘Goals and Goals Based  Outcomes (GBOs): Some Useful Information’ that can be downloaded here.

Using goals in clinical practice with children and young people with learning disabilities, their parents/carers and networks

Ro Rossiter and Heather Armstrong

This section summarises some ways goals and goal based outcomes can be used with children and young people with learning disabilities and their parents/carers and networks. First, it identifies common themes from other sections and then some areas of di erence in emphasis/practice which can help maximise the utility of goals and goal based outcomes for children and young people with learning disabilities. This section will likely be relevant for a broader group of children and young people with a range of physical and sensory impairments, disabilities and/ or neurodevelopmental conditions and for very young children.

Common themes in using goals and goal-based outcomes with children and young people with learning disabilities and their parents/carers include their use with both children and young people with learning disabilities directly and/or their parents/carers (p. 12); the value of discussion and negotiation; goal focus versus problem focus (p. 15–17) and the importance of ownership, prioritising and ranking (p. 17). Clarification of what would it look like if it were better/ worse?, what would be happening when..? enables fuzzy concepts such as agitated, anxious and aggressive to be expressed in individualised, concrete and measurable and performance terms. Setting and tracking goals can assist with engagement, assessments and formulation as well as monitoring and evaluation.

Some differences in emphasis and practice include individualised approaches, which may be necessary given the diverse range of children and young peoples’ abilities and needs. These include more creativity in communication with children and young people to match their cognitive and communicative needs (simplified language/concepts, symbols, use of pictures, ladders, thermometers, card-sort activities or “Talking Mat” type supports, concrete props such as rulers, lengths of string, oor mats, road maps, bulls eye diagrams, shaded circles); more concrete, smaller steps; more goal setting and review with parents/carers and networks (such as schools, short breaks, leisure and other community settings) as well as, and sometimes instead of, with children and young people. Scales may need personalising and, for some, a 0–10 scale may be too great and need simplifying. Some examples in “The Incredible 5-Point Scale” and “A 5 could make me lose control” (Dunn Buron, 2003) show how scales can be developed for a range of emotions and behaviours.

Goals for children and young people or parents/carers can relate to objective behavioural goals (head banging, throwing toys, time staying in bed, playing with sibling/parent, parent trying new activity, doing mindfulness etc.) and more subjective feelings-related goals (ratings of calmness, anxiety, understanding, coping). Individualised behaviour/emotions measures of frequency, duration, intensity, latency and/or settings (i.e. home, school, shops etc.) can be the focus for tracking relevant aspects of assessment and intervention.

The behaviour grids framework developed by Sussex Partnership NHS Trust (Wedge & Singh, 2014) is designed to enable parents to specify and prioritise up to 3 behaviours of concern across dimensions of severity and/or frequency of the behaviour, the distress caused by the behaviour and con dence in managing the behaviour and coping. Evaluation of the use of these behavioural grids as part of a suite of goal based tools and measures in their family intensive support service found reductions in problematic behaviours and increased sense of coping and ability to manage the behaviour for parents (Mulligan et al 2014).

Involving children and young people with learning disabilities in the setting and tracking of goals increases their power, agency and voice. This is especially important for children and young people who are often marginalised and relatively powerless. It can also assist in communication, partnerships and changing patterns of relating within families which can get skewed or stuck around disability and development issues. Goals can be for children, young people, parents/carers and networks to try out new/different activities and opportunities and strategies to evaluate responses rather than focus on change. Some aspects may not change: a parent may remain worried about their child whilst developing more understanding of their child’s behaviours and moods, e.g. “I feel more confident in parenting my child”, “I now know what to do when my child does…”, and seeing their child developing communication, social, emotional and self-help skills. Goals might relate to different kinds of activities across and within networks such as schools, neighbours and short term breaks. It may take longer for engagement and assessment before goals can be set.

Change can happen slowly over many months, so goals and their tracking must be appropriate and realistic. It could be unhelpful and depressing for parents to be ticking the same boxes week after week. Goals may need breaking down into smaller steps, and monitoring/tracking scheduled for 1 week in 4, for example, rather than session by session. Planning how and when to collect and collate goal-based information to t in with key meetings such as care and education reviews can increase motivation and meaningfulness. Using photos/videos can be really helpful. For some children and young people with complex health or life- shortening conditions, profound and multiple disabilities or severe challenging behaviour, goals may be focused on stabilising and maintaining skills and activities, or building in support and fun for families including siblings.

Some outcomes tools in the CYP-IAPT suite can help identify goals and measure change but they are not all appropriate for all children and young people with LD. Other tools include, for example, “P levels” from the National Curriculum for Personal, Health, Social and Relationship Education (QCA, 2007) for emotions/ feelings, and other more detailed measures of behaviours and parental coping etc. are found in Rossiter et al (2014).

References

Dunn Buron, K. (2003). The Incredible 5-Point Scale. APS. Available online: http://www.5pointscale.com/ other_projects_article_5-point_scale.htm 

Mulligan, B., John, M., Coombes, R., & Singh, R. (2014). Developing outcome measures for a family intensive support service for children presenting with challenging behaviours. British Journal of Learning Disabilities. DOI: 10.1111/bld.12091

Rossiter, R. et al (2014). Learning disabilities: collecting and use of feedback with children and young people with learning disabilities and their families, In: Law, D., & Wolpert, M. (2014). Guide to Using Outcomes and Feedback Tools with Children, Young People and Families. London: CAMHS Press

Wedge, S. & Singh, R. (2014). The East Sussex Routine Outcome Measure experience… so far. Available online: http://www.corc.uk.net/wp-content/uploads/2014/11/ROM-CORC-Presentation-Oct-2014.pptx