Sheffield Children and Young People’s
0-19+ Partnership Board
Proposal for a city–wide Transition Board for Young People with
Disabilities and Complex Health Needs
Note: The term transition has a number of different meanings within different
organisations. For the purpose of this paper it relates to the process by which
young people move from childhood to adulthood. It is primarily concerned with
those young people 14+ who have a disability and/or complex health needs and
are in receipt of specialist education, health and social care services.
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Purpose of the report
The purpose of the report is for the 0-19+ Partnership Board to consider the
proposal for:
 the formation of a city–wide Transition Board for young people aged 14+
 for this board to assume responsibility in respect of the following areas:
o development of a city–wide Transition Strategy for young people
with disabilities and complex health needs.
o development of interagency protocols for young people with
disabilities and complex health needs.
o development of a Transition Planning Framework initially to be
used for young people with severe physical / learning disabilities
and complex health needs who are in receipt of specialist
education, health and social care services but to be extended
incrementally across all transition planning at 14+.
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Rationale
2.1
Policy context
Over recent years there has been an increased focus at a national and local
level on the process of transition for young people into adulthood. The aim
is to improve the process and outcomes for young people and their families.
This is reflected in a wide range of legislation and policy relating to
education, social care, health services.
 The Education Act 1996 as amended by the Special Educational Needs
and Disability Act (SENDA) 2001
 The Children’s Act 2004
 The Health Act 1999
 The Youth Matters Green Paper 2005
 The Learning and Skills Act 2000
 The Direct Payments Act 2000
 The Carers and Disabled Children’s Act 2000
 The Disability Discrimination Act 1995
 CSNU/SCYPG Guidance for Connexions Services
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Sheffield Children and Young People’s
0-19+ Partnership Board
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National Service Framework for Children, Young People and Maternity
Services September 2004
Valuing People: A New Strategy for Learning Disability for the 21st
Century (DoH Mar 2001)
Improving Life Chances of Disabled People – (Strategy Unit 2005)
2.2 The Transition Process
The transition process can be complex and confusing for young people
and their families. It requires cooperation and partnership between
children’s and adults’ education, health and social care services and a
range of other agencies.
A range of issues need to be addressed at a strategic level:
 There are different criteria, processes and priorities for accessing
social care provision between children services and adult services.
 Services often work to different legislative frameworks with different
targets, requirements and service pressures.
 Education for children is a universal entitlement for which there is no
equivalent in adult learning or social care services. This is a key issue
for many families as there are wider benefits from school than
education alone, in particular a reliable break from caring for parents
and carers and for the young person the opportunity for social contact
with peers.
 Successful transition may require coordination across a range of
professionals and agencies. This may include school staff,
Connexions, children’s social work, children’s health consultants,
children’s residential/respite care services, adult learning, adult health
services, adult social work, residential, respite, day care and
employment services and housing services.
 In contrast to children’s health services, where one paediatric
consultant may coordinate all services for a young person, a number of
separate health specialists and consultants may be involved for adults.
 There are different ages for transition/accessing services that can lead
to perceived inequalities. For instance in Sheffield a young person can
attend Talbot school 5 days a week until their 19th year. However, a
young person will leave East Hill at 16, and college place post 16 will
be only be for 3 days per week. Some young people transfer to adult
health provision at 16, whilst others remain in children’s services until
age 19.
 There are significant changes to personal finance, including benefits
changes, and charges for adult social care services.
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Sheffield Children and Young People’s
0-19+ Partnership Board
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Who would benefit from the establishment of a city–wide Transition
Board?
3.1
Needs
Initially the Transition Board would focus on young people with a severe
physical / learning disability and/or complex health needs. This could
include chronic conditions such as cystic fibrosis and severe mental health
problems. Further work would need to be undertaken by the Board to
identify the initial areas of responsibility, a detailed work plan relating to
this and the rolling programme of work required to extend the work of the
Board Responsibility for given areas of disabilities or illnesses will be
taken on incrementally by the Transition Board and the work plan agreed
by the relevant Partnership Boards (0-19+ Partnership Board, Adult
Learning Disabilities Partnership Board Physical and Sensory
Impairment).
3.2
Numbers
It is difficult to quantify the total number of young people across the whole
range of needs and disabilities for the reasons identified above.
In terms of young people with a learning disability where a significant work
around the transition process has taken place, there is specific data
indicating a significant increase in numbers over recent years.
Sheffield Case Register records that in the last 5 years, the number of 1519 year olds with a learning disability in Sheffield increased 57% (from 167
to 262). Case Register ‘Social and Physical Incapacity’ ratings identify the
nature and level of people’s disability. Of the 262 15-19 year olds, 120 are
known to have the most severe and complex disabilities (including
behavioural needs). This is 22% higher than the current number of 20–24
year olds with a severe disability. Young people with the most complex
needs, and their families, often experience the greatest difficulties during
transition, due to the nature of their needs and the number of
professionals who may be involved.
Many people with the most profound and multiple learning disabilities
(PMLD), who until recently would have died in childhood/adolescence, are
now surviving to adulthood, presenting new challenges to adult health and
social care services. Recent work by the Joint Learning Disabilities
Service identified 40 young people (14-19) who met the World Health
Organisation criteria for profound and multiple learning disabilities (1).
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Sheffield Children and Young People’s
0-19+ Partnership Board
The needs of this group are the responsibility of a wide range of agencies
including primary and acute health services, and are key priorities for
coordinated multi agency transition planning.
There has also been a clear increase in the number of children diagnosed
with Autistic Spectrum Disorder. Currently in school years 9 to 11 the
average is 29 per year group. In Years 6 to 8 this rises to an average of
46 per year group.
The number of young people with a learning disability from Sheffield’s
Black and Minority Ethnic (BME) communities is also increasing. The
proportion of people with a learning disability over 20 from BME
communities is 7%, but for those 19 and under, the proportion is 17%.
Again, people with learning difficulties and disabilities from BME
communities and their families often experience additional barriers during
transition.
As Sheffield has embraced the inclusion agenda and has integrated many
young people with additional needs into mainstream schools many young
people who would have previously had a Statement of Special
Educational Needs are supported at School Action and School Action
Plus. The majority of young people with Statements of Special Educational
Needs attend a mainstream school and a small number attend special
schools. Young people with more severe disabilities receive additional
support through social care and health services.
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3.3
SEN statements: 737 young people have an statement of educational
need, 655 of which educated in the city and 82 are educated out of the
city
9 young people with disabilities are funded jointly by Education /Health
and Social Care (through the Care and Education management panel)
in out of city placements.
Over the last 4 years the average number of young people placed at
college aged 16.
Service usage
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Connexions are collating their current statistics, which will be available
for the 0-19+ Partnership Board meeting.
Social care: 80 young people aged 14 -17 have an allocated social
worker.
100 young people aged 14 + have a transition worker
Allocation of overnight respite services across Health, Education and
Social Care is managed through a multi agency panel. All young
people receiving overnight respite have a high level of need and / or
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0-19+ Partnership Board
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3.4
there is a risk that their family will not be able to continue to care for
them without this level of support. There are 75 young people aged
14+ currently receiving an overnight service.
The Neurology nursing service based at Ryegate provides a home
support service for 31 young people with life threatening conditions
and profound and multiple learning disabilities.
Across the spectrum of disability that would be within the remit of the
board, those young people with a lower level of need represent a
significant percentage of those who are not who are not in education
employment or training (NEET).
Current experience
Good long-term outcomes for young people are dependent on close
working and service planning across children and adult services with a
wide variety of agencies. Over the last five years in Sheffield, there have
been a number of initiatives in a number of areas aimed at improving the
transition process. However, these have either failed to materialise
through lack of strategic leadership or could not be taken forward
because there is no clear problem solving mechanism between agencies
(2).
Currently there is no joint children and adult group that can take on both
the strategic and operational issues and there is a clear sense of
frustration amongst both professionals and service users.
3.5
All Services Transition Day
An All Services Transition Day (3), co–chaired by the Director of Adults’
Services and the Director of City Wide Children’s Services and attended
by representatives of all key agencies in the city, and parent/carer
representatives, recommended the establishment of a Transitions Board.
The recommendation is in line with Standard 8 of the NSF - Disabled
Children and Young People and those with Complex Health Needs, which
states that Local Authorities, Primary Care Trusts and NHS trusts make
sure a multi agency Transition Group is in place. Specifically, the group
 includes a Transition Champion from the Learning Disabilities
Partnership Board
 has representation from Connexions Service, the local authority
including social care, education and housing The Learning and
Skills Council, health user representatives and voluntary
organisations and
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Sheffield Children and Young People’s
0-19+ Partnership Board
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assumes responsibility for overseeing transitional arrangements
at both strategic and operational level and for agreeing
interagency protocol”
Proposed Membership of the Board
It is proposed that the Board will be jointly chaired by the Director of
Adults’ Services and the Director of City Wide Children’s Services. It will
comprise of executive, senior management and professional
representation from all key health, local authority, and other relevant
public sector organisations. Membership would include:
 Children and Young People’s Directorate (City Wide Children’s
Services, LDD Services)
 Sheffield City Council Community Care Services (Joint learning
Disabilities Service, Physical disability and Sensory Impairment
Service)
 NHS Partners: Sheffield Primary Care Trust, Sheffield Teaching
Hospitals Trust, Sheffield Care Trust, Sheffield Children’s Hospital
Trust
 Other Sheffield City Council Directorates/Sections as appropriate
 Sheffield College
 Connexions
 Learning and Skills Council
 Representatives of parents/carers
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Proposed Reporting arrangements
In the first instance until the detailed remit, terms of reference and
reporting processes are agreed, the work of the Transitions Board will be
reported to the 0-19+ Partnership Board, the Adult Learning Disabilities
Partnership Board, Physical Disability and Sensory Impairment
Partnership Board and any other relevant partnership boards or bodies
identified by the Transitions Board.
Once established the Board will develop its strategic plan and commission
work. The operational work of the Board will take place within the relevant
organisations and partnerships as appropriate. Once the Board is in place
it will determine how this worked is steered and the most appropriate
structural/organisational arrangement.
The Board will be supported initially by the Partnership Manager, Children
with Disabilities and the Strategic Commissioning Manager for Adult
Learning Disabilities. However the administrative and servicing
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Sheffield Children and Young People’s
0-19+ Partnership Board
arrangements requirements will need to be identified by the Board from
within existing resources.
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Proposed initial remit of the Board
The Transition Board members will need to determine the detailed terms
of reference, membership and processes. It is proposed that the Board
will have responsibility for ensuring the development of:
 a city–wide transition strategy
 interagency protocols
 a Transition Planning Framework.
It would:
 Oversee the development of partnership approaches through the
development of a transition planning framework and protocols
 Coordinate all service developments and activities around transitions
and ensure effective partnership working
 Identify best value use of resources to ensure best practice identified
though evidenced based approaches
 Ensure the development of processes that enable families and young
people make good transitions from children’s to adult services
 Monitor transition experience and outcomes
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Key outcomes
It is proposed that the Board will be responsible for ensuring the following
key outcomes for young people in transition and their families
 Improvements to the outcomes of transition for young people and their
families
 Making sure transitions issues are included and addressed on the
appropriate agendas of all organisations and partnerships
 Making sure young people with disabilities and their families are
involved in all aspects of the work of the Board.
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Recommendations
The 0-19+ Partnership Board
 agree the proposal that a city–wide Transition Board is set up as
outlined in this report
 agree that a progress report on the implementation is brought back to
the 0-19+ Partnership Board with detailed proposals around the Board
structure within 3 months.
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Sheffield Children and Young People’s
0-19+ Partnership Board
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References
(1) Young People with profound and multiple learning disabilities:
implications for adults’ services, Joint Learning Disabilities Service, (July
2006)
(2) Action research project on Transition Services for Young Disabled
People in Yorkshire and Humberside Commissioned by the Yorkshire and
Regional Steering group (June2006) Copies of report available
(3) All Service Transition Day June 2006.
Kit Moran
Partnership Manager, Children with Disabilities
March 2007
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