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)
ITSBS
In partnership with
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.
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
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 68 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.
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
ITSBS
Key components of the ITSBS model:
• Positive Behavioural Support
• System Support
• Therapeutic Interventions
• Short Breaks
ITSBS
Psychological models of working
• Positive Behavioural Support including
Functional Analysis
• Systemic
• Solution-focussed
• Narrative
• CBT
• Attachment Theory
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.
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
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
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)
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.
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.
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 rebuilding 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.
ITSBS
Service outcomes so far...
16 families offered the service Oct
2009-April 2012
Pre and post data collected so far
N=11
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.
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.
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).
ITSBS
Families experience of the service
• ESQ
• Carer Outcome Scale
• Quotes from Parents
ITSBS
Measures Post Intervention only
1. Evaluation of Service Questionnaire
(ESQ) - about the carer’s opinion of and
experience of the service i.e. whether
they found the service helpful
2. 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
ITSBS
• Part 1 Responses on ESQ (N=9)
Partly True Not True
Don’t
Know
Listened to 8
1
0
0
Easy to
talk to
8
1
0
0
Treated
well
9
0
0
0
Views &
worries
taken
seriously
7
2
0
0
They know 7
how to
help
2
0
0
Item
Certainly
True
ITSBS
• Part 2 Responses on ESQ (N=9)
Item
Certainly True Partly True Not True
Don’t
Know
Enough
explain
9
0
0
0
Staff
working
together
7
2
0
0
Facilities
comfort
8
1
0
0
Appt’s
8
convenient
1
0
0
Easy to get 8
to
1
0
0
ITSBS
• Part 3 Responses on ESQ (N=9)
Item
Certainly
True
Partly True Not True
Don’t
Know
Recomme
nd to a
friend
9
0
0
0
Overall
9
good help?
0
0
0
ITSBS
• Part 1 Responses on Carer Outcome Questionnaire (N=8)
Item
Responses (number)
Severity of problem
No problem (0)
Slight problem (0)
Fairly severe problem (2)
Very severe problem (6)
Change in problem during
intervention
Improved greatly (5)
Improved moderately (2)
Improved slightly (1)
No change (0)
Worse (0)
ITSBS
• Part 2 Responses on Carer Outcome Questionnaire (N=8)
Item
Responses (number)
Meeting with Clinical Psych
helpful?
Not really helpful (0)
Yes, quite helpful (1)
Yes, very helpful (7)
Change in ability to cope
with problems
Greatly improved (6)
Moderately improved (1)
Slightly improved (1)
No change (0)
Slightly worsened (0)
Much worsened (0)
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.”
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.”
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.”
ITSBS
Example cost comparisons (09-10)
Example cost of Intensive Therapeutic &
Short Break Service per child for 1 year
Approx cost of residential
placement per child for
1 year
£8 857 (CP) + £4028 (SB) = £12 885
£200 000
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.
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.
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
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.
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.
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. Tizard Learning
Disability Review.
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