1 Training Family Carers in the Implementation of Positive Behavioural Support Marie Thomson Depute Manager Positive Behaviour Support Team

2 Plan for the presentation 1.Outline of the training programme ‘Positive Pathways’ 2. Programme outcomes 3. Share our conclusion and recommendations

3 Outline of ‘Positive Pathways’ programme

4 Why train carers in PBS? Benderix et al (2007) reported that parents of children with autism and challenging behaviours described stress, exhaustion and social isolation, but also on other members of the family such as siblings. Family carers often feel under-supported by services (Neece and Baker, 2008; McGill et al, 2006). Link between challenging behaviour and family placement breakdown (McIntyre et al, 2002). Little PBS training available for carers especially for carers of adults.

5 Policy Context Keys to Life (2013) Sometimes young people and their families, will need help and support. Families as partners in intervention. Recommends use of PBS with individuals that challenge. SG Carers Strategy ( ) Carers recognised and valued as equal partners in care. Carers who receive training, feel better supported in their caring role, and more confident. The Scottish Strategy for Autism (2011) Parents should be considered as co-therapists. Services need to recognise this group and be able to provide them with appropriate interventions and support.

6 How Positive Pathways started In 2012 received a 1 year grant from the Scottish Government’s Autism Development Fund Practical training and support in PBS to family carers of adults with ASD 5 workshops a month apart, each workshop was 5 hours long 18 training groups across Scotland, including rural areas where there are fewer services Up to 10 family carers in training groups, total of 130 carers trained

7 How Positive Pathways developed New programme model over 3 months with day and evening times Intensive Support added - home visits and 1:1 sessions Councils have invested into training programme Partnership working with councils and carers group It has been run in 2013, 2014, 2015 Currently finishing 2015/2016 programme (1 year follow up included) Currently Scotland wide programme taking place and places available

8 Programme outcomes

9 Aberrant Behaviour Checklist (Aman et al, 1985)

10 Three Things (MacKay et al, 2007)

11 Carers Outcomes QuestionsAverage score before Average score after % Difference I feel informed, skilled and equipped in my caring role % I get satisfaction from my caring role % I feel I have choices in my caring role, including being able to put limits on my caring role % I feel valued and respected in my caring role and that my expertise is recognised % This was based on the ‘Carers Outcomes Framework’ from Talking Points: Personal Outcomes Approach (Joint Improvement Team, 2012)

12 ‘My message to the Scottish Government would be to ensure that funding to provide this type of training to allow parents to become more aware and get more involved with the development of the people they care for’. ‘Home visits were extremely useful. The team were able to tailor support specifically to my daughter and have given her and myself lots of practical help and support’. ‘I have been able to minimise her challenging behaviour which has in turn reduced the stress we both feel, this has had a knock on effect within the family so our home is much calmer and happier’.

13 Conclusion Chaotic home life did impact on attendance for some families Difficulties arose between workshops for families There were other areas of difficulty out with behaviour Long-term maintenance of strategies was difficult Families embraced the practical aspect of PBS

14 Our recommendations

15 Recommendations Make PBS training widely available for carers Consider delivery methods, e.g. e-learning Intensive 1:1 support should always be offered Follow-up training/continued link with carers is vital Allocation of funding made available for this type of support Need to build local sustainability Partnership working ensures local connections are made