Preventing Residential Placements for Young People with LD and Challenging Behaviours

1. Ealing ITSBS: Preventing Residential Placements for Young People with Learning Disabilities and Challenging Behaviours Dr Catherine Sholl & Dr Caroline Reid, Clinical Psychologists, Ealing CAMHS/Ealing Services for Children with Additional Needs (ESCAN)

2. ITSBS In partnership with

3. ITSBS What is ITSBS? ITSBS = Intensive Therapeutic and Short Breaks Service Based within Ealing Services for Children with Additional Needs (ESCAN) - multi-agency. Collaborative initiative between Clinical Psychology, Social Services and Short Breaks Services for children with disabilities. Aims to enable young people with a Learning Disability and challenging behaviour to remain within their family and community settings. Provides intensive support including an extended short break and intensive clinical psychology input with the young person, family and frontline workers.

4. ITSBS Policy and Legislative Background Importance of preventing residential placements and enabling people with LD to remain in their family and community settings: Aiming High for Disabled Children (2007) Valuing People: A Strategy for Learning Disability for the 21st Century Mansell report revised (2007) Between 5 and 15% of people with a learning disability present with challenging behaviours whereby the safety of them or others is compromised (Borthwick-Duffy, 1994; Quereshi & Alborz, 1992) Once young people go into residential placements they tend to remain in them as adults (from clinical experience) & Mansell (2007) Risks of residential care – Winterbourne View

5. ITSBS Background to ITSBS • July 2008 survey of characteristics of those in Ealing entering residential – male, 11+, moderate/severe LD, ASD, C behr. • Sept-Dec 2008 – Service successfully piloted with one young person using existing resources from ESCAN. • Dec 08 - Presented to senior managers for children with LD who agreed to fund the service for 2 years initially. • Year 1 (2009-2010): 0.5 clinical psychologist & additional short breaks as required for those receiving the service – allowed us to offer a service to 4 young people/families. • Year 2 (2010-2011): 0.5 clinical psychologist, 1 assistant psychologist, additional funding for short breaks as required for those receiving the service – aiming to offer a service to 6-8 young people/families. • Year 3 (2011-2012): 0.8 clinical psychologist, 1 assistant psychologist, additional funding for short breaks as required for those receiving the service – aiming to offer a service to 8 young people/families.

6. ITSBS Key partners involved • Clinical Psychologists for Children with Disabilities • Short Breaks Services – managers and frontline workers • Social Services for Children with Disabilities • Joint Assistant Directors for ESCAN • Special Schools in Ealing • Other members of the multi-agency service as needed including Paediatricians, Occupational Therapy, Speech and Language Therapy, Educational Psychology

7. ITSBS Key components of the ITSBS model: • Positive Behavioural Support • System Support • Therapeutic Interventions • Short Breaks

8. ITSBS Psychological models of working • Positive Behavioural Support including Functional Analysis • Systemic • Solution-focussed • Narrative • CBT • Attachment Theory

9. ITSBS Demographics of cases seen Oct 08-April 12 16 cases seen during this period: 14 were male, 2 were female Mean age was 12-13 years (range from 8-17 years) Ethnicity – 7 Asian British, 4 mixed race British, 3 black African, 1 White British/Irish, 1 White British 9 living in single parent families and 7 living with both parents 13 young people had siblings, 3 did not 3 of the young people had a sibling with a diagnosis of ASD.

10. ITSBS Referral Information All 16 young people seen had a diagnosis of Moderate/Severe Learning Disability 14/16 of the young people also had a diagnosis of ASD 5/16 of the young people had a diagnosis of Epilepsy All cases were referred due to high levels of challenging behaviour at home and in other settings (e.g. school, short break services) All 16 cases, families/other professionals were concerned about home placement breakdown 14/16 cases already accessing a range of short break services and professional support

11. ITSBS A typical referral • Physical aggression at home and school including punching, scratching, hair pulling and kicking family, staff and other students • Destructive behaviours; damaging property, throwing furniture, smashing windows, fire setting • Absconding and risky behaviours in public • Self-injurious behaviour • Obsessions, compulsions and rituals • Sleep difficulties • Soiling and smearing • High anxiety levels • Low mood

12. ITSBS Typical process for intervention • Engaging and bringing together the network • Extended Clinical Psychology Assessment and Formulation (first 4-6 weeks) • Planning and preparation for short break • Extended short break stay (up to 3 weeks) or additional short breaks in the home (length varies) • Intensive Clinical Psychology intervention 1-3 months (plus bringing in of other agencies where needed) • Reduction of short break back to original package • Evaluation • Follow-up Clinical Psychology support (as long as needed)

13. ITSBS Psychology Assessment Detailed psychology assessment and analysis of the challenging behaviours at home, school, and in short breaks setting – quantitative measures (DBC with parents, carers and school, parents 3 concerns, and carer satisfaction scales pre & post intervention), discussions and meetings with the family and relevant professionals, observations in various settings, functional analysis of challenging behaviours, building relationship with the network, child and family. Formulation developed to identify the underlying reasons and consequences for the challenging behaviours and shared with family and carers - PPPP.

14. ITSBS Extended Short Break Young person may have an extended short break at the short break service for a period of 3 weeks Prepared for this using social stories, and countdown provided during the stay At the beginning of the stay clinical psychology develop a behaviour management plan (following on from assessment and formulation) Short breaks staff are trained to implement positive behavioural strategies, and the family visit to observe and practice this Clinical psychology visit regularly to monitor and support implementation of the plan and offer staff consultation If a break away from the home is not appropriate then an intensive package may be offered with carers in the family home/community and consultation from clinical psychology.

15. ITSBS Intervention may include: Extended/intensive short breaks Positive behavioural support plan for managing challenging behaviour Work on reducing and managing anxiety/rituals/obsessions Work on building child and family’s mood and confidence, and re-building positive relationship between family and child Work on sleep difficulties Family work in community settings Family work reflecting on experience of caring for a child with complex needs, impact on family relationships, siblings, etc. Systemic family therapy Liaison and joint sessions with SaLT, OT, Ed Psych Liaison with psychiatry/paediatrics re medical issues and medication (e.g. epilepsy, melatonin, mental health medications) Regular consultation and network meetings with all carers and professionals involved.

16. ITSBS Service outcomes so far... 16 families offered the service Oct 2009-April 2012 Pre and post data collected so far N=11

17. ITSBS Service Outcomes For 15/16 young people seen between 2008 and 2012 residential placement has been prevented at this time and quality of life reported to have improved for families. For 1 young person residential placement was not prevented. Factors involved included him already being in part-time residential placement, late referral, housing eviction, parental mental health difficulties. However, he has since left residential and returned to the family home.

18. ITSBS Pre and Post Intervention Measures 1. Developmental Behaviour Checklist (DBC-P; Achenback, 2002) - 96 item instrument for assessing emotional and behavioural difficulties in children with learning disabilities - 5 subscales; i) Disruptive/Anti-Social, ii) Self-Absorbed, iii) Communication Disturbance, iv) Anxiety and v) Social Relating, and provides an overall Total Behaviour Problem Score. 2. Three Concerns - asks those involved with the young person what their top three concerns are and asks them to rate how worried they are about each concern.

19. ITSBS • Analysis of data • Wilcoxon Signed Ranks Test analysis of DBC-P and Parents 3 concerns scores pre and post intervention. • N=11 • Statistically significant difference pre and post intervention. • Medium-large effect size found. • (results in press in Tizard Learning Disability Review – Reid, Sholl & Gore).

20. ITSBS • Families experience of the service • ESQ • Carer Outcome Scale • Quotes from Parents

21. ITSBS Measures Post Intervention only • Evaluation of Service Questionnaire (ESQ) - about the carer’s opinion of and experience of the service i.e. whether they found the service helpful • Carer Outcome Questionnaire - 9 items which ask the carer(s) about whether the service they were offered led to changes and whether they now have better ability to cope

22. ITSBS • Part 1 Responses on ESQ (N=9)

23. ITSBS • Part 2 Responses on ESQ (N=9)

24. ITSBS • Part 3 Responses on ESQ (N=9)

25. ITSBS • Part 1 Responses on Carer Outcome Questionnaire (N=8)

26. ITSBS • Part 2 Responses on Carer Outcome Questionnaire (N=8)

27. ITSBS Parent Quote “It has helped me to find positive solutions to my child’s problems…and made me look at my son’s problems in a different way. I no longer feel at the mercy of his temper and he doesn’t feel the need to lash out because he knows I’m on his side and I’m trying my best to understand him.”

28. ITSBS Parent Quote “The way the psychologist looked into every aspect of our child’s difficulties and worked out plans to help with each one, and getting other agencies involved e.g. short breaks, OT and SaLT. She was very pro-active in helping us e.g. doing home visits and going out in the community with our child.”

29. ITSBS • “I used to cry every day and dread Joseph coming home, but now I cry less and sometimes even miss Joseph when he is out, and look forward to him coming home.”

30. ITSBS Example cost comparisons (09-10)

31. ITSBS Approx costs per year 2010 onwards 0.8 clinical psychologist £37 301 Full time assistant psychologist £32 036 8 extended short break packages £40 000 (costs have ranged from £3694-£5022 per child) This £109 337 aims to provide intensive work to 6-7 families and follow up work to previous families (if needed) This service cost is less than the minimum cost of just 1 residential placement for 1 year.

32. ITSBS Advantages of ITSBS: What makes it successful? The break gives the family a break from the norm and time to: sleep and recover think about their child and their wishes for their future attend Clinical Psychology appointments consider new ways of supporting their child re-organise the home and make changes to the environment. Intensive Clinical Psychology input means that it is possible to gain a thorough understanding of one young person, their family and the challenging behaviour they present, across a variety of settings, and develop and implement an individualised behaviour plan to promote consistent responses and strategies across settings. Clinical Psychology input also gives the parents, young person and siblings a place to reflect and think about their feelings and relationships with one another and the impact of caring for a child with a disability.

33. ITSBS Challenges and Reflections Timing of different agencies and multi-disciplinary working Working with VERY large networks Holding responsibility for most complex cases Managing risk to staff and families Staff burnout – importance of consultation, supervision and informal support Skilling up staff – training and consultation role of psychologists as well as therapeutic work Boundaries Motivation of families Shifting culture/attitudes around residential placements Restrictions around physical resources e.g. space in schools, housing, financial

34. ITSBS Next steps 1. Links with the Tizard Centre: • Publications in submission • Increasing research and measures • Development and evaluation of a parent (and then short breaks carer) group programme based on ACT and mindfulness approaches. • Support with cost analysis 2. Continue to increase menu of short breaks approaches utilised by this service and evaluate. 3. Development of the approach to include Mild LD and High Functioning ASD.

35. ITSBS Conclusions and Recommendations The evidence obtained so far indicates this model should be considered as a viable local and cost-effective option for young people presenting with severe challenging behaviours whose home placements are at risk of breaking down. Positive feedback from families who have received this service. Costings indicate that although this service does require additional staff resources and financial support, this is considerably less than the cost of residential placements. Children with learning disabilities and their families have a right to receive the local support that they need to help their child continue to live and participate in their community settings, while also experiencing a decent quality of life, and this service promotes these values and makes this possible for families who are in considerable need.

36. ITSBS Publications in press Sholl, Reid & Udwin (in press). Preventing residential care for young people with intellectual disabilities and challenging behaviour: The development of the Ealing Intensive Therapeutic and Short Breaks Service. Association for Child & Adolescent Mental Health Special Issue. Reid, Sholl & Gore (in press). Preventing residential care for young people with intellectual disabilities and challenging behaviour: Emerging data from the Ealing Intensive Therapeutic and Short Break Service.TizardLearning Disability Review.

37. If you have any questions Dr Catherine Sholl and Dr Caroline Reid Clinical Psychologists Ealing Services for Children with Additional Needs Carmelita House 21-22 The Mall London W5 2PJ Tel: 020 8825 8744 or 020 8825 5429 Catherine.sholl@nhs.net Caroline.reid1@nhs.net