This document summarizes a webinar on meeting the needs of children with complex behavioral challenges. It discusses: 1) Children who often have both learning disabilities and mental health needs, commonly autism, who may be in inpatient mental health units or residential special schools. Most are boys and teenagers with communication impairments and challenging behavior. 2) According to policy and data from 2016, there were 170 children under 18 and 635 aged 18-25 in inpatient units, often treated far from home. Many stayed much longer than the 28 day limit. 3) A national children's team will track implementation of plans to meet children's needs, ensure proper care reviews, audit recommendations to improve outcomes,

1. Learning Disabilities:
Share and Learn Webinar
30 March 2017
Topic:
How can we meet the needs of
children with complex behavioural
challenge?
Dame Christine Lenehan, Director,
Council for Disabled Children
#improvingLD @NHSEnglandSI

2. Working with children with
behavioural challenge
Dame Christine Lenehan CDC

3. Which children?
• Children and young people with both a learning disability and a
mental health need
• Autism would be common, but not just Autism
• Children on the edge of or placed within in patient mental health
units (but a note of the corresponding cohort in Residential Special
Schools)
• In profile, most will be boys, most will be teenagers, 90%+ will
have communication impairments and most will have significantly
challenging behaviour

4. Reflecting on the human stories of
challenge

5. Policy background: Horrific abuse of patients with learning
disabilities at the Winterbourne View Hospital in 2011, leading
to Transforming Care reforms (underpinned by new data
collections).
• At end February 2016, there were 170 in-patients with
learning disabilities and/or ASD aged under 18 years and
635 aged 18-25 years.
• Children are more likely to be treated further from home
than older inpatients. On average under 18’s were treated
79km from home.
• Young inpatients (<18 years) had on average been in
hospital for 285 days or around 9 months, ten times longer
than the 28 day limit for ‘section 2’ admissions for
assessment and treatment.
• Almost one third stayed for a year or more. Around 10
children were inpatients for 2-5 years.
Children and young people with learning
disabilities or ASD who are inpatients in
specialist mental health units (Feb 2016)

6. Care and Transfer Reviews (CTRs) were developed to
avoid unnecessary admissions and to plan towards
discharge or transfer as soon as possible. CTRs
should take place soon after admission and every six
months.
• 100 (59%) of the 170 inpatients under 18 years
had not had a CTR
• 105 (62%) still had no scheduled CTR, worse than
for other age groups.
• Only 35 (21%) of the 170 children in inpatient
care had a planned transfer date, a much lower
proportion than across all inpatients.
Children and young people with learning
disabilities or ASD who are inpatients in
specialist mental health units (Feb 2016)

7. There are rising numbers of disabled
children with complex needs and/or
life-limiting conditions, who, with their
families, are likely to need support
from health, education and social care
at times throughout their life.
Headline message from the data analysis

8. There are at least 73,000 children
of school age with complex
needs (narrowly defined):
• 10,900 children with profound
and multiple learning difficulties
• 32,300 children with severe
learning difficulties
• 27,500 children with autistic
spectrum disorders in special
schools
• 2,300 children in multi-sensory
impairments.
School Census data, Jan 2016
Using this definition, schools are
working with 23,700 more children
with complex needs than in 2004.
• 3,120 more children with PMLD
(+40%)
• 270 more children with SLD
(+1%)
• 18,860 more children with ASD in
special schools (+219%)
• 1,440 more children with MSI
(+168%)
How many disabled children are there with complex needs and
life-limiting conditions?

9. A review of the system
This Review was triggered by a small number of individual cases. They
focussed public and Ministerial attention on the care, support and
treatment provided to the small group of children and young people
with complex needs (and behaviour that challenges) involving mental
health problems and learning disabilities and/ or autism.
Alistair Burt, the then Minister of State for Care and Support, asked for
a Review to:
“take a strategic overview and recommend what practical action can
be taken by Government Departments and partners at national level
to make the system better able to co-ordinate care, support and
treatment for children and young people with complex needs (and
behaviour that challenges) involving mental health problems and
learning disabilities and/ or autism.”

10. • Lots of passionate, committed individuals who care deeply
but are affected by:
• A lack of a strategic vision for children
• A lack of accountability and coherence within the system
• No cross government ownership of the issue
• A domination of classifications, diagnoses, labels which
effectively rule out support
• A strong professional agreement on a model of support, but
one which is not commissioned
Lessons from the process

11. • An issue about the commissioning footprint
• Patchy support for parents
• Austerity biting across all statutory and non statutory
services
• Disagreements about workforce
• At tier 4, a lack of the right provision in the right place
• A financial system which incentivises crisis and
disincentivises prevention
• Short sightedness about change
Lessons from the process

12. Taking a children’s rights approach
Understanding the basic denial of rights
Each of us asking ourselves some key questions …
would this be OK for my child?
But not getting lost in the world of parents
Using the tools in the systems to support our
approaches

13. Responsibility and Accountability
Nationally ... what cross government mechanism should be in place to
stop these children getting lost, particularly as the service
configurations change?
For clinicians, what should a national approach look like?
Locally ... where should responsibility be …….
• For local areas?
• ForLD/Mental health services?

14. Workforce
Lack of skilled staff at every level
So,
How do we support staff at all levels on managing challenging
behaviour?
Do our models and commissioning join up locally?
Can we share skill sets?

15. Understanding financial flows
• Do current financial planning systems incentivise the models we
want to see?
• For children in in-patient care £1 million per child, every 3 years of
placement is a conservative indicator of cost
• Do you know what you are spending? And for what outcomes?
• How do we incentivise invest to save, early intervention etc ?
• How do we identify this group early enough and what do we do?

16. New approaches , new models ?
Looking at what is possible instead
Do these services have to be a one way street?
How could we support new models of care?
How do we make the most of programme linkages, Transforming Care,
Future in Mind, IPC and the SEND reforms … from a regional or sub
regional approach?
Basic lessons about supporting families … Why are we back on key
workers again and how do we move forward?

17. Key national programmes

18. • Good quality behavioural support services
• Which recognise early
• Which support parents
• Which aren’t diagnosis based
• Which work across health, education and social care
• Build on the models of dynamic risk registers
• Understand costs and outcomes
• Don’t accept that institutionalisation is inevitable
Looking at different models of success

19. Supporting families promoting good
practice
WHAT FAMILIES WANT KEY QUESTIONS FOR LOCAL
AUTHORITIES AND HEALTH COMMISSIONERS?
1. Regular visits, planned around the needs of the young person and
family
2. A child-and family-centred plan for “keeping in touch” is agreed at
the outset and regularly reviewed
3. Families involved in transition planning, at the point of admission or
before?
4. Supporting children to “feel at home”
5. Making the most of communications technologies
6. Access to advocacy and skills in non-verbal communication
7. Listening to parents’ concerns, supporting them and intervening
when trust breaks down

20. Learning Disabilities:
Share and Learn Webinar
30 March 2017
Children and Young People’s
Workstream
Sue North, Acting Lead for Children
and Young People Workstream,
Transforming Care, Learning
Disabilities Programme, NHS England
#improvingLD @NHSEnglandSI

21. www.england.nhs.uk
Transforming
Care
Children and
young people’s
work stream
2017 - 18

22. www.england.nhs.uk
Aims of the work stream
• Children, young people and their families will
receive the right support at the right time in the right
place to meet their needs and enable them to live at
home or in the local community.
• Transforming Care Partnerships will have clear
plans to enable them to successfully deliver this.

23. www.england.nhs.uk
“Golden threads”
Children, young people and families are supported
to have a good quality of life. They are treated with
respect and have an expectation of a home in their
local community
Children and young people should be kept safe but
at the same time supported to take positive risks
Children and young people should have choice and
control over their lives
Children and young people’s support should be
provided in the least restrictive way
Children and young people should get equal health
outcomes to the rest of the population
Equal!

24. www.england.nhs.uk
Dame Christine Lenehan. January 2017
“These are our children and they are
known. They occur in every area and
they often follow a well-trodden
pathway out of their local authority
area, never to come back”

25. www.england.nhs.uk
• Independent Chair
• Parent Carer representative
• Department for Education
• Association of Directors of
Children’s Services
• Local Government Association
• Voluntary Sector
• Department of Health
• NHS England – Special
Educational Needs team, /
Children & Young Peoples Mental
Health team, / Transforming Care /
Integrated Personal Commissioning
Children and Young People’s
steering group

26. www.england.nhs.uk
Participation of children and young
people and parent carers

27. www.england.nhs.uk
• Refresh – Autumn 2016
• Within the new policy, specific annex in
relation to children and young people
responding to issues raised in the
engagement process.
• Changes in the timescales for review.
• Code and toolkit for children and young
people to be published shortly.
Care and Treatment Review Policy
refresh – care, education and treatment
reviews for children and young people

28. www.england.nhs.uk
• Embedding and quality assuring the process and outcomes of CETRs
• Implementation of the Children’s Supplementary Guidance and use of the
‘pathway’ to support this
• Supporting TCPs to make sure there is a children and young people’s lead
on Transforming Care Partnership Boards
• That children and young people are included in registers that identify those
at risk of admission.
• Representation of children & young people on TCP Boards to co-produce
decision making and the implementation of plans which directly impact
them
• Robust, pro-active preparation for Adulthood to reduce the
• cohort of future adult in-patients
Key Processes for Improvement

29. www.england.nhs.uk
The national children and young
people’s team
• Track Transforming Care Partnership Boards implementation of
their plans to ensure they are all age and meet the needs of
children and young people and their families / carers
• Tracking implementation of Care, Education and Treatment
Review policy.
• Work with system partners to audit the implementation of the
recommendations from the Lenehan Report.
• Ensure systems are in place to monitor the impact on admissions
and discharges for u18s resulting from £1 million of transformation
funding for projects focused on improving outcomes for children
and young people.
• Collate and share case study examples from areas receiving £1m
transformation funding.

30. www.england.nhs.uk
Children & Young Peoples Team
Sue North – Acting lead
David Gill – learning disability
adviser
Phil Brayshaw – service model lead
Tracy Holmes – Project
Management Support
Regional Strategic Case Managers
• Sarah Jackson - North
• Siobhan Gorry – North
• Tonita Whittier – Midlands & East
• Kate Sutton – Midlands & East
• Maureen Banda – London
• Cindy Gordillo– South

31. www.england.nhs.uk
Children & Young Peoples team
• suenorth@nhs.net
• davidgill8@nhs.net
• Tonita.whittier@nhs.net
• Kate.sutton1@nhs.net
• c.gordillo@nhs.net
• Maureen.banda@nhs.net
• Siobhan.gorry@nhs.net
• Sarah.jackson23@nhs.net
• Tracy.holmes3@nhs.net
• Phil.Brayshaw@nhs.net
• www.england.nhs.uk/learningdisabilities/care/camhs

32. www.england.nhs.uk
Thank you for listening
Any Questions?