Children with
disabilities
A needs assessment
August 2014
Sheena Carr
Jen Johnson
Susan Otiti
Graeme Walsh
Senior Public Health Commissioning Strategist, Public Health
Project Officer, Children and Young People’s Service
Assistant Director, Public Health
Senior Information Analyst, Public Health
1
2
It is anticipated that findings from this needs assessment will be used to
influence local joint commissioning, ensuring that partner agencies work
together to improve the experience and outcomes for families who use
services in Haringey.
3
Section 1. Literature review
1.1 Introduction
This literature review builds upon the chapter “Disabled Children and Young
People” in the Haringey Joint Strategic Needs Assessment.1
Definition of disability
The Disability Discrimination Act 19952 defines a disabled person as someone
who has a physical or mental impairment, which has substantial and long term
adverse effects on his or her ability to carry out normal day-to-day activities.
Causes of disability and factors affecting disabled children and their families
Disabilities may be developmental or acquired. Sometimes, several factors
may combine to cause a disability and often the exact cause is unknown.
There are however recognised risk factors3:

Chromosomal and genetic abnormalities – examples include
syndrome such as Down syndrome; sickle cell disease causing
increased risk of stroke; and phenylketouria; can be caused by
chromosomal abnormalities or gene mutations.

Premature birth and/or low birth weight babies - Babies who are
born early and/or have a low birth weight have approximately a 20%
chance of having a disability. Premature birth and low birth weight can
be caused by maternal lifestyle choices, for example smoking or poor
nutrition. However for a majority of women who have preterm births,
the causes are unclear.

Foetuses being exposed to drugs and/or radiation - prescription
drugs, environmental pollutants and radiation can cause birth defects.

Poor maternal nutrition - deficiencies in key vitamins and minerals
can lead to disabilities, for example hydrocephalus and spina bifida.

Maternal use of drugs and alcohol - excessive use of recreational
drugs and alcohol amongst mothers during pregnancy can lead to
developmental problems and/or disabilities in the child.

Maternal smoking - smoking restricts the oxygen supply to the baby
raising the risk of low-birth weight and premature birth, both of which
increase the probability of a child being disabled.

Mother and baby having different blood types - when a mother’s
blood type is different to the baby’s, there is risk that the mother’s body
forms antibodies that can attack the baby’s blood causing disabilities,
such as cerebral palsy and deafness.
Infectious diseases suffered by mothers and children - a number of
viral and sexual infectious diseases suffered by mothers during

4
pregnancy, including measles and HIV, can cross the placental barrier
and cause disabilities. Diseases suffered by children in early childhood,
such as meningitis and measles can also cause disability.

Parental age - older and younger parents are more at risk of
complications that can result in childhood disability. Those under 20 are
more at risk of poor nutrition and poor placental transfer of food and
oxygen, whereas those who have children later are more likely to suffer
from chromosomal abnormalities.

Economic disadvantage - families from less advantaged
socioeconomic backgrounds tend to be disproportionately represented
amongst those with disabilities. Those from more economically
disadvantaged backgrounds may be more vulnerable to lifestyle factors
that can contribute to disability and disability itself can be a major
contributor to material poverty.

Physical injury - injury to the mother’s abdomen during pregnancy can
result in disabilities when the child is born. Accidents and injuries
suffered by children can also result in disability these can be life long
i.e.: when a child suffers extensive head injury.
 Mental health in children with moderate to severe learning
difficulties - Children with significantly challenging behaviour which is
not addressed early enough to prevent costly and challenging
placements away from home e.g. children with unaddressed sensory
difficulties leading to mental health/behavioural feeding.
Children with long-term disability are a diverse group. Some will have highly
complex needs requiring multi-agency support across health, social services
and education – the most extreme example perhaps being those who are
technology-dependent. Other children will require substantially less support,
although nevertheless have a long-term disability.
The Department for Education (DfE) 4has stated that:

Disabled children and young people currently face multiple barriers
which make it more difficult for them to achieve their potential, to
achieve the outcomes their peers expect and to succeed in education.

29% of disabled children nationally live in poverty.

The educational attainment of disabled children is unacceptably lower
than that of non-disabled children and fewer than 50% of schools have
accessibility plans.
Disabled young people aged 16-24 are less satisfied with their lives
than their peers and there is a tendency for support to fall away at key
transition points as young people move from child to adult services.

5

Families with disabled children report particularly high levels of unmet
needs, isolation and stress.

Only 4% of disabled children are supported by social services. A report
by the Audit Commission in 2003 found that there was a lottery of
provision, inadequate strategic planning, confusing eligibility criteria,
and that families were subject to long waits and had to jump through
hoops to get support.

The prevalence of severe disability is increasing5.
1.2 Evidence based practice
Increasing the quality and range of early years interventions6
While there is substantial evidence that early year’s interventions improve
outcomes for children and families, it is still uncertain as to how long the gains
last, whether the gains are a direct or indirect result of the intervention, and
whether simpler interventions could deliver as much or even more benefit.
Research has also not yet identified which interventions work best for which
groups of families. Evidence is strongest in identifying the services that
parents most value, but professionals do not always share the same views as
to which service outcomes are most important. However, research does show
that the most effective interventions are tailored to the child and are family
centred; take place in natural homely surroundings and take the family’s
environment and resources into account; are structured and are the right
intensity and duration; and aim to develop parent-child relationships, as well
as support child development.
Research also shows that:

key workers improve the quality of life for families with disabled
children by ensuring quicker access to benefits and support, and
reducing levels of parental stress. Effective key workers have good
counselling and communication skills, are able to work in partnership
with parents and children and also respect their expertise. They also
have specialist knowledge of different conditions. Key workers
therefore should have regular training, as well as high quality
supervision and support.

web based information offers parents instant, 24 hour support, that
can be usefully focused on specific issues or problems.

high quality pre-school centres improve children’s cognitive
development and reduce the need for special education at primary
school, especially for the most disadvantaged groups of children.
6

neonatal interventions for low birth weight babies are only
effective in the short-term because other associated factors, such as
poverty and social exclusion may have a far greater impact than any
disability or impairment.

Early years interventions are not meeting the needs of the most
disadvantaged. The greatest benefits are experienced by families with
the highest levels of social capital, education and income. Therefore,
services need to compensate for social disadvantage.
Improving access to positive and inclusive activities7
Participating in positive activities is associated with improved outcomes for
disabled children’s health and well-being. Not all services are genuinely and
actively inclusive, and there are different interpretations of what inclusion
means. Disabled children and their families want inclusive services where
disabled children and non-disabled children meet, as well as some
‘segregated’ services exclusively for disabled children.
Research cannot yet identify the play and leisure preferences of different
types of disabled children, or the different types of support they need. Indeed,
there are very few studies in this area and it is difficult to draw any firm
conclusions about best practice. However, implications from research for local
service improvement include the following:

all staff need to be skilful in facilitating inclusive play and
activities between disabled and non-disabled children.

a range of specialist and inclusive activities should be offered to
give more choice.

disabled children, young people and their families needs support
to help them engage, particularly if they are from a disadvantaged
background.

limited exposure to non-disabled children’s activities interferes
with disabled children’s social development, particularly in terms of
their understanding of peer culture.

there should be a cross-agency strategy to ensure all disabled
children and their families receive information about local play
activities.

taster sessions help to encourage children to try out a new activity.

local authorities should undertake ‘access audits’ of play and
leisure services, and make changes to ensure all aspects of the service
are inclusive.
7

disabled children and their families should be involved in the
evaluation, redesign and development of services. Local authorities
should also monitor the numbers of disabled children participating in
positive activities and evaluate the outcomes.
There is also evidence about the barriers to access and participation. These
barriers to the inclusion of disabled children in play and leisure activities are
multiple and complex and relate to:

the child and their individual preferences, their confidence and
belief in their abilities, shyness or lack of social skills and previous
experience of inclusive play.

the family’s tendency to participate – e.g. socially disadvantaged
families with lower levels of income and access to support, or families
who have less belief in their child’s ability and lower levels of trust, may
not readily access services.

the service, particularly the attitude and awareness of staff, their
knowledge, skills and understanding.

lack of detailed, proactive, up-to-date and accessible information
about the service on offer

the environment, in terms of physical access to buildings, amenities
and equipment, public transport and its cost, access to childcare
facilities and the attitudes of other members of the public.
Sufficient differentiation of services to meet diverse needs8
Research in this area is very limited and there are virtually no studies of
interventions and their outcomes. In terms of providing services to meet the
needs of different groups of disabled children, the evidence suggests that
many disabled children and their families have similar needs, but meeting
those needs requires different approaches depending on individual
circumstances; and that achieving positive outcomes for disabled children
requires an assessment and response to the whole family and consideration
of all the social and environmental factors likely to have an impact.
Staff working with specific groups may require specialist skills and knowledge,
but being able to respond flexibly to meet the needs of every disabled child
should be a feature of all mainstream services. In addition, while sensitivity to
culture specific needs is required, care should be taken not to assume that all
members of a particular group have the same needs.
There are a number of group specific findings:
Black and minority ethnic (BME) disabled children
8

The most pressing problems affecting some disabled children from
BME backgrounds are poverty and social disadvantage – these factors
appear to have a greater influence on the prevalence and impact of
disability than ethnicity.

The needs of most families are basically the same. Differences lie in
the capacity and willingness of services to respond. BME groups
experience more difficulties in referral and access to services, as well
as racism, bullying and poor staff attitudes.

BME families are less aware and make less use of specialist disability
services.

The factors specifically associated with positive outcomes for this
group include collaborative relationships between families and
services, which recognise any cultural differences as a source of
strength; language and culturally specific information to help families
make choices and be involved in decision making; and a diverse
workforce and provision of interpreting and translation services.
Disabled children in asylum seeking families

Asylum seeking families may not report their child’s impairments for
fear this may affect their immigration status.

Many of these families have unmet care needs and struggle to cope
with unsuitable housing, being isolated and communication problems.

Evidence suggests greater attention should be given to their current
disadvantage, rather than to any past trauma.
Disabled children with complex needs
Children who require support from multiple agencies need an effective key
worker, effective case coordination and more effective transition planning
between children’s and adults’ services. In addition, many parents believe that
earlier intervention would have prevented the need for an away-from-home
placement.
1.3 National policy drivers (a full list is included in Appendix 1)
Aiming High for Disabled Children9 outlined the then Government’s
intention to ensure that all children have the best start in life and the ongoing
support that they and their families need to fulfil their potential. It recognised
that disabled children are less likely to achieve as much in a range of areas as
their non-disabled peers and outlined three key priority areas to improve
outcomes for disabled children:
9



Access and empowerment
Responsive and timely support and
Improving quality and capacity.
Support and aspiration: A new approach to special educational needs
and disability10
In March 2011 the Coalition Government published “Support and aspiration: A
new approach to special educational needs and disability .The Green Paper
outlines reforms to the way professionals work with disabled children and
their families and what families can expect from local services. The key
proposals from the Green Paper are outlined below:
Early identification and assessment

Health service professionals e.g. health visitors will work with parents
to assess the development of all children to clarify where they need
additional support or a different approach, through the health and
development review for children aged between 2 and 2½.

High quality early education and childcare will be accessible to all
children.

By 2014, children and young people aged from birth to 25 who would
currently have a statement of SEN or learning difficulty assessment will
have a single assessment process and an Education, Health and Care
Plan which will have the same statutory protection as the statement of
SEN. All services will work together with the family to agree a Plan
which reflects the family’s needs and ambitions for the child or young
person’s future health outcomes covering education, health,
employment and independence. The plan will be clear about who is
responsible for which services.

Local pathfinders will test how to reform the assessment process and
explore the best replacement, including whether the voluntary and
community sector could co-ordinate assessment and bring greater
independence to the process.

The time taken to complete the assessment process will be reduced.
Giving parent’s control

Local authorities and other local services will communicate a clear local
offer for families to clarify what support is available and from whom.

Parents will have the option of a personal budget by 2014 to give them
greater control over their child’s support, with trained key workers
helping them to navigate different services.
10

Parents will have access to transparent information about the funding
that supports their child’s needs.

Parents of disabled children will continue to have access to a short
break from caring while their child enjoys activities with their peers.

Parents will have a clear choice of school with equivalent rights to
express a preference for any state funded school, including academies
and free schools.
Learning and achieving
Leadership and professional development
 Teachers and other staff in schools and colleges will be trained and
confident to identify and overcome a range of barriers to learning.

Teachers to identify effectively what a child needs to help them to learn
and to plan support to help every child progress well.

Special and mainstream schools to share their expertise and services
to support the education, progress and development of pupils in other
special and mainstream schools, leading to a greater choice of
specialist provision.

Support the development of SEN and disability training for those
teaching in colleges and encourage partnership working in the FE
sector to spread knowledge and expertise.
Improving the way we identify and support children with SEN and
disability

School Action and School Action Plus will be replaced with a new
single school-based SEN category for children whose needs exceed
what is normally available in schools. Statutory guidance on SEN
identification will be revised to make it clearer for professionals.

Schools will have additional flexibility to support the needs of all pupils
and additional funding through the pupil premium.
Preparing for adulthood
By 2015, disabled young people and young people with SEN will have:

Early and well-integrated support for, and advice on, their future as part
of the proposed birth to 25 single assessment process and Education,
Health and Care Plan and support into employment.
11

Access to better quality vocational and work-related learning options to
enable young people to progress in their learning post 16.

Good opportunities and support to get and keep a job and

A well-co-ordinated transition from children’s to adult health services.
The Government will explore the feasibility of annual health checks
from GPs for all disabled young people from the age of 16.
Support and aspiration: A new approach to special educational needs and
disability. Progress and next steps11
The Next Steps12 to the Green Paper was published in May 2012. This
promotes the need to jointly commission: “By developing stronger local
strategic planning and commissioning arrangements, local authorities and
local health services will play a pivotal role in ensuring that children and young
people with SEN or who are disabled receive high quality support, and that
parents are able to make informed choices about what is right for their family”.
The reforms are being tested in 20 pathfinder areas, covering 31 local
authorities and their health partners. Emerging evidence from the Pathfinder
projects will be outlined in more detail later and it will be important to take note
of developments from the pathfinders to complete a picture of best practice
and evidence of effectiveness. The list of pathfinder sites is included in
Appendix 2 and a dedicated website outlining developments to date can be
found at http://www.sendpathfinder.co.uk/foodforthought/
Draft legislation on reform of provision for children and young people with
special educational needs
In September 2012, the Government published draft provisions to improve the
support provided to those children and young people, and to their
parents13. These provide for:


A new duty for joint commissioning which will require local authorities
and health bodies to take joint responsibility for providing services.
A requirement on local authorities to publish a local offer of services for
disabled children and young people and those with special educational
needs.

New protections for young people aged 16-25 in further education and
a stronger focus on preparing them for adulthood.

Parents and young people, for the first time, to be entitled to have a
personal budget, extending their choice and control over their support.

Further Education colleges for the first time and all academies,
including Free Schools, to have the same duties as maintained schools
to safeguard the education of children and young people with SEN
12
The Children and Families Bill
The Children and Families Bill takes forward the Government’s commitments
to improve services for vulnerable children and support strong families. The
Bill will reform the systems for adoption, looked after children, family justice
and special educational needs. One of the main provisions of the Bill will be to
transform the system for children and young people with special educational
needs, including those who are disabled, so that services consistently support
the best outcomes for them. The Bill will extend the SEN system from birth to
25, giving children, young people and their parent’s greater control and choice
in decisions and ensuring needs are properly met.
The Bill takes forward the reform programme set out in Support and
aspiration: A new approach to special educational needs and disability:
Progress and next steps by:

Replacing statements and learning difficulty assessments with a new
birth to 25 Education, health and care Plan, extending rights and
protections to young people in further education and training and
offering families personal budgets so that they have more control over
the support they need;

Improving co-operation between all the services that support children
and their families and in particular, requiring that local authorities and
health authorities work together;

Requiring local authorities to involve children, young people and
parents in reviewing and developing provision for those with SEN and
to publish a local offer of support.
Report of the children and young people’s health outcomes forum14
In January 2012, the Secretary of State for Health launched the development
of a Children and Young People’s Health Outcomes Strategy by establishing
a Forum made up of individuals with a wide range of expertise and a shared
commitment to improving the health care for children and young people. The
Forum was asked to:

Identify the health outcomes that matter most for children and young
people

Consider how well these are supported by the NHS and Public Health
Outcomes Frameworks and make recommendations and

Set out the contribution that each part of the new health system needs
to make in order that these health outcomes are achieved.
13

For the purposes of this needs assessment, the following
recommendations relate specifically to outcomes for disabled children.
These recommendations include:
Identification of children and young people with long term conditions
and disability
Improve the information that the NHS and schools capture about disabled
children and young people, to support better identification and better
commissioning of services to meet this need.
The voice of disabled children and young people
Strengthen the voice of disabled children, young people and their families by
extending all measures of patient experience to children and young people
and creating a child health charter based on the United Nations Conventions
on the Rights of the Child.
Making the system work
Every level of the NHS must have clear strategic leadership for children and
young people, to drive service improvement and integration of services for
disabled children and young people, and where possible provide services
closer to home.
The report states that real integration means that the joins between services
and between commissioning responsibilities are invisible because
organisations are working in partnership to deliver the best outcomes for
children and young people. In essence, this means that children and families
do not have to constantly repeat information; “I only want to tell my story
once”; that records are not lost or duplicated and that resources are focused
on the same goals.
Integration of care is particularly important for children and young people with
disabilities or a t risk of developing disabilities, with long term conditions, with
complex needs or with mental health disorders.
The report strongly welcomes the commitment to strengthen integration in
legislation (in the Green Paper and the Children and Families Bill). However,
the report goes on to state that effective integration depends on more than
legislation and that the starting point for integration should be how the service
is experienced by the child, young person or family, as opposed to being
based around the system, professionals or institutions or the location of
services.
In response to the Health Outcomes Forum, the Council for Disabled Children
outlined the following as key to ensuring the health system works to improve
services for disabled children:
Commissioning
14
The needs of disabled children and young people need to be represented at
every level of the commissioning structure to ensure that services meet their
needs. This is particularly true for children and young people with low
incidence conditions where there needs to be clarity about which part of the
system is responsible for commissioning and ensuring quality services.
Integration
For integration to work at a local level, the NHS needs to incentivise health
services to act as equal partners with social care and education services in
meeting the needs of disabled children. This would require clear guidance
setting out the relationship between the different parts of the health system,
wider health related services and where responsibility for disabled children’s
health lies. This would mean that disabled children and their families know
which part of the health system is responsible for delivering their services and
enable them to seek appropriate redress if things go wrong with their care
package.
Voice
Guidance should explicitly recognise and promote the right of disabled
children and young people to participate in decisions about their health care
and the design of services they use. This is particularly important as data on
the needs of disabled children is often lacking so it is vital that services
engage directly with disabled children and young people. The NHS Health
Outcome Framework Indicator 4.8, Patient Recorded Experience Measure
(PREMs) will be key in promoting the voice of children and young people.
Better health outcomes for children and young people: Our pledge15
The Department of Health published “Better health outcomes for children and
young people: Our Pledge in February 2013.
The Pledge was launched in conjunction with the Government's formal
response to the Children and Young People's Outcome Forum Report. Some
of the significant commitments in the Pledge include:

Establishing a new Children and Young People's Health Outcomes
Board led by the Chief Medical Officer which will provide leadership on
improving children's health outcomes across the entire health system

Establishing a new Children and Young People's Health Outcomes
Forum, co-chaired by Every Disabled Child Matters Board Member
Christine Lenehan, to provide expertise and advice, and hold an annual
summit with the Chief Medical Officer to monitor progress on child
health outcomes

The Department of Health will work with the Department for Education
and the new Children and Young People's Health Outcomes Forum on
measuring integrated commissioning for special educational needs and
15
disability, improving outcomes for children and young people with
challenging behaviour and improving the transition to adulthood for
young people with complex needs.
Emerging evidence from the Pathfinder sites
The Special Educational Needs and Disability (SEND) Green Paper
pathfinder programme was launched in September 2011. Twenty pathfinders,
made up of 31 local authorities and their health partners have been working
within existing statutory frameworks towards the following common objectives:
 To develop a new birth to 25 assessment process and a single
Education, Health and Care Plan (EHCP)

To explore how the voluntary and community sectors can introduce
more independence to the process

To ensure the full engagement of children and young people and their
parents and families

To ensure the full engagement of schools and colleges and

To improve choice, control and outcomes for children and young
people through the use of personal budgets and direct payments
The pathfinder programme is being independently evaluated and will continue
to run until September 2014. Findings from the programme are informing the
development of the Children and Families Bill. In March 2013 The Department
for Education released the SEND Pathfinder Programme Report 16which
presents a summary of recent progress across the pathfinder programme and
includes headline results from a survey of sixty-five families with some of the
first completed EHCPs.
This next section focuses on the learning from the pathfinder sites around
multi-agency working, engaging with children, young people and families; the
local offer; EHCPs, key working; personal budgets and preparing for
adulthood.
Multi-agency working
In Southampton, pathfinder activity is being coordinated through a multiagency Children and Young People Development Service (CYPDS). This
brings together a wide range of professionals across all sectors to deliver
integrated assessments and single EHCPs. The assessment team will be
jointly commissioned and co-located from April 2014. Early findings show that
duplication of assessments has been reduced by co-ordinating previous
assessment information and joint visits. Southampton’s model has been
designed to be sustainable beyond the pilot and to operate within existing
resources.
16
From April 2013, Solihull’s CCG has asked the local authority to commission
the following services on its behalf: CAMHS, Speech and Language Therapy;
Paediatric Occupational Therapy; respite care; multi-disciplinary assessment
and multi-agency specialist placements. The contract value is £4.77 million.
The Solihull model removes agency barriers by sharing responsibility and
agreeing priorities.
Engaging with children, young people and families
In Manchester, the Young People’s Forum has been commissioned to seek
the views of young people within and outside of the pathfinder cohort. At least
thirty young people in the Manchester pathfinder are regularly consulted about
their views on the EHCP and local offer and their views feed into the
governance structure.
Southampton has commissioned five of its Special Schools to undertake
consultation projects with children and young people, focusing on the coordinated assessment and EHCP and on personal budgets. The approach to
the consultations varies in accordance with the needs of the children and
young people in each of the schools.
Darlington Borough Council has made a financial commitment to its Young
Leaders Group (made up of disabled young people aged 14-25), recognising
the value of this partnership. The young people have influenced how
information is communicated, helped to set priorities for service delivery and
ensured that planning uses person-centred approaches. The Young Leaders
group dedicates one meeting a month to look at SEN web-based materials
and help to shape a child-friendly version of the EHCP.
In Cornwall, consultation events were held with young people which helped to
form the development of the single assessment and EHCP planning process.
Young people reported that they welcomed:

Being at the centre of the process

Only having to give details and tell their story one

Bring really listened to and having an influence over their future

That the confusion around transition will be brought together n the plan
to ensure a more streamlined and effective pathway to adulthood.
Local offer
All pathfinders are actively developing their local offer with a focus on fully
involving parents and young people in drawing up the offer and ensuring it
meets their needs. Pathfinders will be publishing their draft local offers in
Spring 2013 and developing these until they describe the full range of
services for children and young people with SEN and how to access them.
In Greenwich, a draft template was tested with key services to identify the
type of information that should be included in a comprehensive local offer. A
17
major stakeholder event was held involving parents of disabled children,
voluntary sector representatives and service providers to help refine the draft.
A draft local offer for autistic spectrum disorder services will be published by
the end of March 2013.
The SE7 pathfinder covers seven authorities in the South East of England.
The SE7 group began work on its local offer with educational settings using
questions developed by parents and young people and written from their
perspectives. These were then tested by schools and colleges and amended
in light of their feedback and that of parents and young people. The
pathfinder has also developed a set of overarching principles and essential
features across all aspects of local offer work which is available at
www.se7pathfinder.co.uk/se7-local-offer
Education, Health and Care Plans
All the pathfinders have developed their assessment and planning pathways
with families and young people and in shaping the EHCP. Families and young
people have welcome d the opportunity to be involved in designing the EHCP
which sets out their needs, aspirations, outcomes they want to achieve and
how services will work together to support them.
The Trafford pathfinder has committed to taking twenty families through a new
pathway that offers a transparent approach, a combined assessment and
ENCP and the option of a personal budget. The children involved are
identified as having needs in all three areas of education, health and social
care. This work is being taken forward by a multi-agency Single Integrated
Plan (SIP) task and finish group, chaired by a senior manager and includes
two parents who have contributed to the design and testing process. Panel
meetings are opened up to parents and feedback has been largely positive
with parents stating that their children are considered as a “whole” as
opposed to focusing on one aspect e.g. education.
In February 2013, the lead evaluators of the pathfinder programme submitted
headline results from a survey of parents/carers whose children had received
an EHCP. The survey found that families were generally positive about their
experiences of the pathfinder process with the majority reporting that the new
system delivered better support, was more straightforward, had professionals
working more closely together and encouraged family involvement. However,
any views should be noted with caution until more families become involved
with the new system and more familiar with the processes.
Key working
All pathfinders are testing person centred planning and key working
approaches. In Bromley, the pathfinder is working closely with Early Support
to roll out the pre-school model up through the age range from five to twenty
five. Parents appointed through Bromley Parent Voice have been trained to
act as key workers and Bromley Mencap has been commissioned to
undertake further research on key working, particularly at points of transition.
Key working is embedded through the assessment and planning process and
18
families have reported the importance of having a named person to help them
work through complex systems.
Personal budgets
In Southampton, the pathfinder is offering families more choice and control
over home to school transport by offering a personal travel budget (PTB).
PTBs are being offered in two special schools with children with differing
transport needs to test its approach. Ten families began receiving a PTB in
January 2013. Attendance of these children is being monitored and families
have reported that having a PTB has supported independence skills.
Preparing for adulthood
Twelve pathfinders are specifically focusing on preparation for adulthood and
are working with mainstream colleges and independent specialist providers to
develop more flexible packages for young people to prepare them for further
learning and employment.
The Department for Education is funding the National Development Team for
Inclusion (NDTI) to support pathfinders on the preparing for adulthood strand
of the work. The NDTI have put together a menu of support for pathfinders to
help them develop and test their approaches to preparing young people for
adulthood and monitor their progress. The menu is available at
www.preparingforadulthood.org.uk
From April 2013, “pathfinder champions will begin work to support nonpathfinder areas to help prepare for reforms. The London pathfinder
champions are Bromley and Bexley.
The national picture: Families’ experience of using services
The Care Quality Commission undertook a review in 201117 asking
organisations what they were doing to support the health care needs of
disabled children and young people and their families. They also sought the
views of people who use the services to find out their actual experiences. This
section highlights the key findings from a service user perspective.
Diagnosis
Comments received from families related to the length of time it took to get a
diagnosis and getting a diagnosis so that children could receive the right care.
On average, families had to wait five years to get a diagnosis. Many of the
children had been diagnosed after they started school and the school picked
them up as “slow”. They were then were treated through the special
educational needs procedure. The more severe children were identified earlier
but not given a diagnosis of autism until much later. Participants felt that the
numbers involved and lack of expertise or specialists in autism was one of the
reasons for lengthy delays.
Involvement
Participants were asked whether they had been consulted on the provision of
care of the planning of services. The majority said they had not been involved,
19
“we are the parents – we care for our children – they should be talking to us
and finding out from our experiences”
Joined up services
Families were asked whether they got access to the services they need and
whether services communicated with each other. They reported variable
experiences with some reporting they had to fight to get services:
“If your child is out of the social care network, then you can’t get any services
– you just keep going round and round – you fight to get an assessment –
once you’ve got that – you fight to get a diagnosis. Once you’ve got that you
fight to get support and then you hit a brick wall”
Lack of information about how services interact, or how services differ from
each other in what they provide was also highlighted as an issue by families.
Communication
There was a general consensus of not feeling listened to; “This is constant
and ongoing. The lack of communication; no-one listening to me. The
professionals all seem to have preconceived ideas and that they know my
child better than I do.”
These findings were echoed in Disabled Children and Health Reform:
Questions, Challenges and Opportunities18 . The key findings based on
interviews with a range of families include:

Inefficiencies of the current system, including poor co-ordination of
appointments and care, poor communication between different parts of
the system and difficulties accessing equipment.

Poor integration of services and in particular, difficulties of achieving
continuity of care or a holistic approach to treatment and support.

The need for robust and accurate information about disabled children
and young people at local and national services.

The need for increased transparency about how effective local health
services are for disabled children and young people and the need for a
local offer that includes health.
In August 2012, over 620 parents and carers of disabled children took part in
a Scope survey “Keep Us Close” 19 where parents and carers spoke about
their experiences. In summary, families said that they battled to access the
support they need close to home; of finding that local services are not
inclusive and of being passed between professionals. They described being
forced to push for a statement for their child to be assured of receiving
services. Parents also revealed that the only way they could find the services
they need was by travelling outside of their local area or in some cases being
separated from their child.
20
The survey also revealed that the challenges in accessing local services
impacts on the lives of families. For example, the time they spend travelling to
access services leaves them feeling anxious and stressed, guilty about the
decisions they make and the impact of their actions on other family members.
This reinforces the need for changes to be made to local services to improve
the situation for disabled children and their families.
21
Section 2. Data
2.1 Introduction
Why is disability a public health issue?
There is an array of evidence that suggests that the lives of children that are
born with or acquire a disability in their early years are restricted both in length
and the quality of those lives. Children with a disability have been found to
have a 15 year reduced life expectancy compared with children without a
disability. 20 In terms of lifestyle, they are less likely than non disabled children
to undertake physical activity and have an associated increased risk of
obesity. 21 22 23 In some circumstances children with disabilities may be more
likely to smoke than non disabled children and young people.24 Education
levels are considerably lower amongst children with disabilities. The Papworth
Trust suggests that 71% of disabled people do not have a qualification higher
than Level 2 compared to 17.8% of non-disabled people.25
Studies have also shown that this group of children and young people have a
higher than average risk of developing mental health problems and may
experience higher levels of anxiety and associated sleep deprivation. 26 It has
been estimated that the odds of developing a psychotic disorder are 6.5 times
higher in children with disabilities than those without. 27 Many young people
with disabilities are also more likely to have behavioural issues than children
without a disability.28 29 These issues range from aggressive behaviour,
temper tantrums and generally disruptive behaviour.
Children with disabilities are also one of the most vulnerable groups in our
society. This vulnerability manifests itself in a number of ways. This includes
an increased likelihood of being a victim of sexual abuse, 30 a pre-disposition
to self injury (mainly within autism)31 32 and an increased likelihood of
becoming involved in the criminal justice system through their involvement in
criminal activity. 33 The risk of physical abuse is particularly high with one
study conducted in the UK suggesting that up to a quarter of children with
disabilities are at risk of violence.34 It has been suggested that the incidence
of maltreatment is increased amongst children with disabilities35 with one
particular study suggesting that rates of maltreatment are up to 3.4 times
higher amongst children with disabilities than children without disability and
that the rate of maltreatment is particularly high in children with learning
disability and those that are sensory impaired. 36
Children with a disability are also subjected to high levels of stigma 37 38 and
discrimination and many find the transition to adulthood a very difficult time.39
This can lead to young adults not being accepted into workplaces and wider
society and may ultimately result in an increased likelihood of individuals
experiencing material deprivation. In extreme cases this can result in people
with disabilities becoming homeless and it has been found that homeless
people are statistically more likely to have a learning disability than the
general population. 40
22
Why do we need to know the number of children and young people with
disabilities?
Children with long term disability are a diverse group. Some will have highly
complex needs requiring multi-agency support across health, social services
and education – the most extreme example perhaps being those who are
technology dependent. Other children will require substantially less support
but are still considered as having a long term disability. However, it is likely
that all children with a disability will require advice and support from at least
one statutory agency in order for them to achieve their potential in life whether
it is through achieving academically or living lives that are as long and as
healthy as possible given their disability.
Without knowing the number of children and young people with disabilities it is
extremely difficult to plan services to meet their needs and the needs of the
people that care for them. Many services are not planned with the needs of
people with disabilities in mind and as a result are not suitable for or
acceptable to the disabled community. This has been well documented for
mental health services for children with disabilities.41 The only services
provided for these children are through CAMHS (child and adolescent mental
health services) and Learning Disability Psychiatry. Many of the potential
clients do not fit the criteria for referral and end up falling through the cracks 42
or practitioners do not have the knowledge to treat children with disabilities
who have mental health problems.43
Needs assessment is the preferred method by which public health
professionals identify unmet needs within the population. However, this
process has proven to be difficult to implement in the past in relation to
disability since it has not been possible to quantify the number of children with
a disability with any confidence. Combined with this, studies that have
estimated the prevalence of disability in children vary considerably both in
terms of methodology, use of definition, and the data that is used, such that
prevalence rates based on different studies provide contradictory prevalence
rates.
Methods utilised to estimate the number of children and young people with
disabilities.
Although many attempts have been made at coming up with an accurate
prevalence figure for the number of disabled children and young people living
in England there is still not one definitive prevalence figure that is quoted
within the literature. Prevalence estimates tend to be quoted within a range
which demonstrates the uncertainty of the different rates. Furthermore these
prevalence figures vary significantly across the studies since each attempt
has used a different methodology. These methodologies range from using
survey methods; modelling techniques; and using data from GP registers and
routinely available data sets. Extrapolating national figures to local authority
areas is particularly problematic and results in local estimates that are not
relevant to the local population. The most commonly cited surveys and
studies aimed at deriving the prevalence of childhood disability are now
described.
23
The Thomas Coram Research Unit developed a methodology for estimating
the number of children with disabilities in each of the local authorities in
England. 44 They requested that each local authority should submit the
number of children known to have a disability using data collected locally. The
specific request was for data for children with a SEN (Statement of
Educational Need) and the number of children receiving DLA (disability living
allowance) plus any other children that were known to have a disability whose
information was stored in any other database. They then compared these
figures with estimates from the OPCS (Office for Population Census and
Surveys) and the FRS (Family Resource Survey). They concluded that an
estimate of prevalence with an upper and lower limit could be derived. This
involved using the lowest count from either DLA claimants or SEN as the
lower limit and the combination of the 2 as the highest limit. This methodology
suggests that the mean prevalence of children with disability lies between
3.0% and 5.4%. During analysis the Thomas Coram Unit identified a number
of factors relating to methodology that may have distorted the true figures.
These included not providing the detail to local authorities on which data sets
to collect data from nor which definition of disability to use. This resulted in
local authorities using different data sets which ultimately meant that the data
may not be directly comparable.
A study which attempted to estimate the number of children with a disability at
the local level used data from the General Household Survey and the Family
Fund Trust. These were published in Chapter 10 (Disability) of “The health of
children and young people”, Office for National Statistics (ONS). This study
suggests that the prevalence of disability is considerably higher than the
prevalence suggested by the Thomas Coram Research Unit. These figures
are described below and are also available on the CHIMAT website. 45 They
estimated the prevalence to be as high as 17.8% of children aged between 0
and 19 years.
Another study in the UK conducted secondary analysis of data derived from
the Family Resource Survey (FRS) to estimate the proportion of children with
a disability.46 (The FRS uses the DDA definition to derive the largest number
of children with disabilities which is quoted later in this report). The
researchers employed a number of statistical techniques that enabled them to
predict the prevalence of disability not only by the overall prevalence of
children with a disability and type but also by ethnic group. The overall
prevalence rate that was derived was 7.3 % (CI 6.9 – 7.7) however
prevalence rates were found to vary by ethnic group; Indian 2.7% (CI 1.4 –
5.4); Mixed 9.5% (5.4 – 14.7). These confidence intervals suggest that
although there is variation by ethnicity there is no significant difference
between ethnic groups found within this study.
A group of researchers commissioned by the Improving Working Lives:
Learning Disabilities Observatory utilised regression techniques to try to
predict the number of pupils who may have MLD (moderate learning
difficulty), SLD (severe learning difficulty), PMLD (profound and multiple
learning difficulty) or ASD (autism spectrum disorder) based on the numbers
24
of children on the SEN register combined with other factors.47 These included
poverty and ethnicity data from the school census, socio-economic factors,
benefit claimants, deprivation measures and data from maternity services
(including birth weight, gestational age and maternal age). They found that the
variables listed positively predicted the number of pupils with a disability, but
that different variables predicted different types of learning disability.
A study in Bristol utilised data from GP computer systems to derive a local
prevalence rate.48 The study analysed READ codes (General practice disease
coding system) on the computer systems of 16 surgeries along with free text
that alluded to a child having a disability. Using this method the study
suggested that the prevalence of disability amongst the 16 practices was
4.9% although there was a large variation across practices. A similar study
took place in Leeds, however the prevalence rates were found to be
considerably lower than the Bristol Study.49
The CHIMAT study also highlighted that the prevalence rates of children and
adolescents with mild disabilities were higher for those from semi-skilled
manual and unskilled manual family backgrounds. The prevalence of children
with mild disabilities from professional family backgrounds was lower in
comparison to the other socio-economic groups. The rate of severe disability
was found to be greatest amongst children from semi-skilled manual family
backgrounds, whilst the lowest rates were for children from professional and
managerial family background.
Other sources of prevalence data that also measure the prevalence of
children with disability have been derived from the Census, registers
containing children receiving DLA payments and the CIN (Children in Need)
census. Although these data are routinely recorded they are not considered to
be appropriate measures of disability as they do not provide a comprehensive
picture of children and young people with a disability.
Current estimates in Haringey
This needs assessment uses local data available to the London Borough of
Haringey to estimate the prevalence of disability in children. In order to
identify whether the newly derived prevalence is accurate it is necessary to
have an understanding of prevalence rates and other demographic factors
that are already known and the methodology that they followed. These data
can then be compared with the new analysis presented in this study.
The Thomas Coram Research Unit (TCRU) estimated that the number of
disabled children in England is estimated to be between 288,000 and
513,000. The mean percentage of disabled children in England local
authorities has likewise been estimated to be between 3.0 % and 5.4%. If
applied to the current population of Haringey this would equate to between
1,901 and 3,422 children experiencing some form of disability.
Data extracted from the CHIMAT website based on the GHS and the FFT
described in an earlier section estimated the number of children with a long
25
standing illness or disability and those that were severely disabled by gender
and 5 year age group. However, the breakdown provided relates to the
highest suggested prevalence rate of 17.8%.
According to the study it is estimated that there are 6153 boys between the
ages of 0 and 19 with a long standing illness or disability and a further 32 who
are severely disabled. The largest number of boys with a disability is in the 59 age group (see Table 1).
Table 1: Boys in Haringey with a disability: long-standing illness or
disability and severely disabled
Age Group
0-4
5-9
10-14
15-19
0-19
Long standing illness or
disability
1274
2025
1540
1314
6153
Severely disabled
14
10
6
2
32
Source: CHIMAT
Table 2 describes the estimates for girls with a disability. It estimates that
there are 5103 girls aged between 0 and 19 with a long standing illness or
disability and a further 15 who are severely disabled. The largest number of
girls with a disability is estimated to be in the 10 to 14 age group, although the
estimate for those aged 5-9 is very similar.
Table 2: Girls in Haringey with a disability: long-standing illness or
disability and severely disabled
Age Group
0-4
5-9
10-14
15-19
0-19
Long standing illness or
disability
1157
1404
1406
1136
5103
Severely disabled
7
4
3
1
15
Source: CHIMAT
The estimates suggest that there are more boys than girls with a disability in
each of the 4 age groupings described. Thus according to this study boys
account for 55% of all disabled children and young people.
Table 3 describes the combined number of children and young people
estimated to have a disability. The largest estimated proportion of children
with a disability in Haringey is in the 5 to 9 age group, accounting for 30.5% of
the total. The 0 to 4 and the 15 to 19 age groups have the lowest % of the
total (both 21.7%). Prevalence rates peak in the 5-9 age group but remain at
high levels in the 10-14 and 15-19 age groups. Prevalence rates are
considerably lower in the 0-4 age group.
26
Table 3: Children and Young People in Haringey with a disability: longstanding illness or disability and severely disabled
Age Group
0-4
5-9
10-14
15-19
0-19
Long Standing
illness or
disability
2431
3429
2946
2450
11256
Severely
disabled
21
14
9
3
47
% of all
disabled
children
21.7%
30.5%
26.1%
21.7%
Prevalence
rate
13.5%
21.8%
19.4%
17.2%
17.8%
Source: CHIMAT
Table 4 summarises the prevalence rates and numbers of children with a
disability that are either routinely collected or have been developed as part of
a study. It suggests that the number of children with a disability varies
significantly based on the measure and the methodology used within studies.
Table 4: Number and proportion of children with disability measured by
different agencies
Category
Number
%
1397
2.2%
1901 - 3422
3.0 – 5.4%
Limiting Long Term Illness Census 2001 (aged 0-17)
2240
3.5%
In receipt of Disability Living Allowance (Aged under
18)
OPCS estimate 3.2%
1130
1.8%
2027
3.2%
FRS estimate 7.3%
4626
7.3%
11,303
17.8%
SEN Pupils (primary and secondary)
Thomas Coram Unit (3.0 – 5.4%)
CHIMAT Report (17.8%
Source: Research Report DCSF – RR042
Benchmarking Special Educational Needs in Haringey with England
As part of the TCRU study each local authority submitted the number of
children on their Statement of Educational Needs register in 2007. This
enables a comparison to be made with England. Table 5 describes the rate of
specific disabilities per 10,000 pupils in Haringey schools compared to
children in all England schools. The categories highlighted in bold type face
indicate where Haringey has a higher recorded rate than the England
average. For learning difficulties Haringey has higher rates in secondary
schools for all classifications of learning disabilities except for specific learning
disabilities. In primary schools the rates are lower in Haringey than in
England.
Table 5: Pupils at Primary and secondary schools with specific
educational (Haringey Vs England)
Disability
Haringey (Rate per
10,000)
Primary
Specific learning disability
4.8
27
Secondar
y
9.2
England (Rate per
10,000)
Primary
7.5
Secondar
y
13.0
Moderate learning difficulty
9.2
27.0
17.2
18.4
Severe learning difficulty
0.5
1.5
1.1
0.7
Profound and multiple learning difficulty
0.4
0.7
0.4
0.1
Behavioural, emotional and social
difficulties
Speech, language and communication
12.4
38.0
14.6
23.6
40.1
14.4
22.9
7.5
Hearing impairment
1.4
1.1
1.8
2.2
Visual impairment
0.7
0.8
1.0
1.2
Multi sensory impairment
0.2
X
0.1
0.1
Physical disability
1.8
2.4
3.2
3.0
Autism spectrum
10.0
8.8
5.8
7.0
Other difficulty / disability
4.0
6.1
3.3
N/A
Source: CHIMAT
Haringey also has a higher rate of children with behavioural, emotional and
social difficulties in secondary schools than England, but again, the rate is
lower in primary school children.
The rates of speech, language and communication difficulties in both primary
and secondary schools in Haringey are almost double the rates of England
and account for the largest burden of disability recorded on the SEN registers.
Rates of Autism are also high in Haringey compared to England. This is
particularly the case for primary school children where rates are higher than
for secondary schools.
2.2 Methodology
Definition of disability used
For the purposes of this needs assessment the broadest definition of disability
is being utilised in order to capture the greatest number of children with a
disability. This definition is the one described in the Disability Discrimination
Act 1995.
The Disability Discrimination Act 1995 defines a disabled person as
“someone who has a physical or mental impairment, which has
substantial and long term adverse affects on his or her ability to carry
out normal day-to-day activities”50
Data sets used
The Head of Children with Disabilities in the London Borough of Haringey and
the Commissioner for Children’s Services in Haringey Clinical Commissioning
Group (CCG) were asked to suggest data sets within their work areas that
would identify children with disabilities. These personnel were identified as
being the experts within their fields and most likely to be able to identify the
full range of data available.
28
They both identified a number of services which are detailed in Table 6. The
Head of Children with Disabilities identified 4 distinct databases maintained by
the local authority along with databases for a number of specific service
related functions. The Commissioner for Children’s Services identified 5
specific clinical services that are provided by Whittington Health that hold data
for children with disabilities (Whittington Health is commissioned by Haringey
CCG to provide all community based health services to the GP registered
population of Haringey).
Table 6: Data sources for children with disabilities identified by the
London Borough of Haringey and Whittington Health.
Services identified by the London
Borough of Haringey
Services identified by Whittington
Health (the community health
provider for Haringey registered
patients)
Physiotherapy
Statements of Educational Needs (SEN)
Integrated additional support
School Action Plus
Speech and Language Therapy
Service
Dietetics Service
Educational Psychology
Occupational Therapy Service
Specific services (Autism, SAL, Visual,
Hearing)
Hearing Disability Service
Source: London Borough of Haringey
A minimum data set was requested from each service. In some cases this
was provided by the service in other cases the service provided the entire
database that included other fields. The data variables that were requested
were as follows: first name, surname, date of birth, gender, postcode, ethnicity
and diagnosis / type of disability.
Method of data cleansing
To make the final analysis easier each data set was cleansed to ensure that
data elements such as the date of birth and postcodes were displayed in the
same format. Data elements that were not provided (e.g. gender) had a
column inserted with a heading “Gender” and each row remained blank so
that unreported fields could be identified in the final analysis. Data that was
provided in word documents were inserted into Excel. The medical diagnosis
was looked up in a medical dictionary and was assigned to a generic
definition of disability (e.g. physical disability, autism etc.). It would have been
preferable for the process to be completed by somebody with a medical
background but unfortunately this resource was not available. Where a
syndrome or medical condition could not be matched to a generic definition of
disability the diagnoses field was not filled in.
Method of data merging
Each data set was inserted into one of two master files; one for the local
authority and the other for the NHS. At this point the data sets were combined
by matching postcodes, names and dates of birth. Where all fields matched
the data could be combined, where names and dates of births were matched
29
but where postcodes were not available an assumption was made that this
was a match (this was necessary since there were a number of missing
postcodes). Where names and dates of birth were the same but postcodes
were different it was not possible to ascertain a direct match. Therefore there
is a possibility that there is potentially a small amount of over counting. In
addition, there were a number of cases were dates of birth and postcodes
matched but the name was spelt slightly differently. In cases such as these an
assumption was also made that these data records should be matched.
A full diagnosis for both the health data and the local authority data was
developed during the process. For example a child may have a behavioural
disorder and a physical disability. In cases where there is co-morbidity all
diagnoses are recorded in one line of the combined data set.
The same process was then undertaken to combine the two data sets to
create a complete data set covering both health and social care services. A
new field was inserted to identify those known to both health and the local
authority, those known only to health and those known only to the local
authority.
Method of data analysis
The final data set was analysed in Excel by using the pivot table function to
calculate frequencies and proportions within each variable and associated
confidence intervals were derived. Individual analysis of the health and social
care data was carried out as well as a combined analysis of the two data sets.
Prevalence rates were calculated using the 2011 Census figures.51
Each valid postcode was assigned to a ward of residence and deprivation
score 52 so that a separate analysis could be made to describe the
geographical distribution and deprivation profile of the children with a
disability. To analyse the link between deprivation and disability postcodes are
matched to Lower Super Output Areas, which are in turn linked to a
deprivation score. There are 144 LSOAs in Haringey which have been
grouped into quintiles based on their deprivation score.
Since it was clear at an early stage that some of the data sets did not include
all of the fields in the original request a further piece of analysis was
undertaken to quantify the quality of the data to identify whether this might
have an effect on the study design and so that it could be highlighted to the
appropriate services.
2.3 Results
The studies that have thus far estimated the number of children with
disabilities have either extrapolated national data to the Haringey population,
estimated using surveys or relied on data provided by specific services such
as the Special Education Needs database (SEN). The following analysis
describes data on children with disabilities derived by combining data from
both the local authority and services provided by the NHS through Haringey’s
community health provider to provide a local prevalence of children and young
people known to the combination of these services. The following analysis
30
suggests population groups that may be under estimated which may indicate
that there is unmet need in these areas.
Estimating Prevalence
Following the cleansing of the data sets there were 710 children known to
Whittington Health and 2675 children known to the London Borough of
Haringey. Once the data were combined 76.5% were known only to the local
authority, 11.5% known only to Whittington Health and 12.0% were known to
both agencies. The estimated prevalence of children aged 0-19 is estimated
to be 4.72% (CI: 3.99 and 5.55), which suggests that using this method there
are between 2,528 and 3,517 children and young people with a disability living
in Haringey that are known to either Whittington Health or the London
Borough of Haringey.
The calculated prevalence rate would appear to be in line with estimates
derived from other sources described earlier in this report and summarised in
Table 7. The prevalence rate is not as high as that proposed in the CHIMAT
report and the FRS study but higher than the Thomas Coram Unit study. It is
in line with estimates proposed by the OPCS (Office of Population Censuses
and Surveys).
Table 7: Comparing derived prevalence with other studies.
Category
Number
%
Combining Whittington Health and LBH
2,528 – 3,517
3.99 – 5.55
Thomas Coram Unit (3.0 – 5.4%)
1,901 – 3,422
3.0 – 5.4%
OPCS estimate 3.2%
2,027
3.2%
FRS estimate 7.3%
4,626
7.3%
CHIMAT Report (17.8%)
11,303
17.8%
Therefore at first glance it can be assumed that the methodology used in this
needs assessment is robust and has identified a prevalence that is within the
boundaries expected for the London Borough of Haringey. The following
section describes the demographics of the data set and compares with other
demographic profiles for children with disabilities in an attempt to suggest
whether the study is identifying the correct cohort of children.
Disability by age group
The analysis of the combined data sets suggests that the prevalence of
children with a disability increases with age (see Table 8). The prevalence of
0-4 year olds is 2.2%, which increases to 5.8% of 5-9 year olds and 6.8% of
15-19 year olds. Confidence intervals suggest that there the prevalence of 0-4
year olds is significantly lower than the prevalence in children and 5-9 and 1014.
Table 8: Disability prevalence rates by age group in Haringey.
Age Group
Number on
register (%)
Prevalence
31
95% Confidence
level
0-4
391 (12.9%)
2.2%
0.8 – 3.7
5-9
913 (30.2%)
5.8%
4.3 – 7.3
10-14
1034 (34.2%)
6.8%
5.3 – 8.3
15-19*
661 (21.9%)
4.6%
3.0 – 6.2
Unknown
22 (0.7%)
Source: Whittington Health and LBH
The age distribution for children known to the London Borough of Haringey
follows a normal distribution with an average age of 10.5 years compared to
8.2 years for children known to Whittington Health where the age profile does
not have a normal distribution (which in part can be explained by the smaller
cohort of children). The frequency distribution chart (see figure 1) shows that
there are more children known to the local authority within almost all of the
ages apart from in children aged 0, 1 and 2. The mean age for all children in
this study is 10.2 years.
Figure 1: Frequency of children known to Whittington Health, London
Borough of Haringey and combined.
300
Number of children
250
200
150
100
50
0
0
1
2
3
4
5
Whittington Health
6
7
8
9
10 11 12 13 14 15 16 17 18 19
London Borough of Haringey
Combined
Source: Whittington Health and LBH
Table 9 describes the prevalence rates by age group from this study with data
from the CHIMAT report. Whilst the total numbers and associated prevalence
rates are very different from each other the distribution amongst age groups is
similar in that there are fewer children identified in the age groups 0-4 than in
the other age groups where rates are considerably higher. This suggests that
the age profile derived by combining data is consistent with at least one other
study, although the threshold for diagnoses is considerably higher in the
CHIMAT study.
32
Table 9: Observed disability by age (comparisons with data from the
CHIMAT study)
Estimate (CHIMAT)
Age Group
Local data
Number
Prevalence
Number
Prevalence
0-4
2452
13.5%
391
2.2%
5-9
3443
21.8%
913
5.8%
10-14
2955
19.4%
1034
6.8%
15-19
2453
17.2%
590
4.1%
0-19
11303
17.8%
2928
4.6%
Source: CHIMAT, Whittington Health and LBH
Disability by Gender
There are over 3 times the number of boys with a disability than girls, with
boys accounting for 76.7% of the total number of children where a gender was
recorded. A considerable proportion of records (33.9%) did not contain a
record of the gender of the child.
Compared to the CHIMAT study there is a considerably lower proportion of
girls that have been identified as having a disability. Studies of children with
disabilities in the United States identified that autism spectrum disorders were
5 times more common in boys. 53 Data for England suggest that of the
estimated 298,000 children with a learning disability only 36.9% are girls. 28
This suggests that the findings of the study are inconsistent with the analysis
presented in this report.
Disability by deprivation of residence
The analysis suggests that children with a disability live in the most deprived
parts of Haringey. Figure 2 describes the deprivation profile for children
known to the local authority and Whittington Health that have been assigned a
deprivation score based on a valid postcode.
There is a clear gradient between the most deprived areas where a high
proportion of children with a disability live compared to the least deprived
areas where there are a lower proportion of children with a disability.
Confidence intervals around each of the proportions suggest that there is a
significant difference between children living in the most deprived quintile and
those living in the 3rd, 4th and 5th quintiles. Indeed the analysis suggests that
each quintile is significantly different from at least 3 other quintiles.
33
Figure 2: Proportion of children in each deprivation quintile in Haringey
35%
30%
Percentage
25%
20%
15%
10%
5%
0%
1st
2nd
3rd
4th
5th
Deprivation quintile (1st is most deprived)
Source: Whittington Health and LBH
The analysis by deprivation score has only been presented for the combined
data set since an extremely high proportion (74%) of postcodes from
Whittington Health were either not provided or were invalid.
The findings of this report are consistent with the literature around children
with disabilities and their increased likelihood to be living in deprived areas
and relative poverty.54 55
Disability by ward of residence
Describing disability prevalence by deprivation alone does not give a
complete geographical picture of need that is often required for designing
services. Therefore a ward level analysis has been included. The wards with
the highest prevalence rates are Seven Sisters (4.7%) and Harringay (4.2%),
which are both in the most deprived east of Haringey. The lowest prevalence
rates are in Highgate, Muswell Hill and Crouch End which are amongst the
least deprived wards. This is as expected given the analysis by deprivation
already described.
However, a correlation between ward prevalence rates and ward deprivation
score shows that there is a positive correlation between average ward
deprivation scores and the prevalence of disability in children (see figure 3).
This is substantiated by a Spearman’s Rank correlation co-efficient of 0.78.
However the R2 value (0.2887) suggests that disability levels by geographical
distribution cannot be fully explained by deprivation levels alone, which of
course we know to be the case.
34
Figure 3: Correlation between prevalence rates and average deprivation
for Haringey wards.
5
Prevalence (%)
4
3
R² = 0.2887
2
1
0
0.00
10.00
20.00
30.00
40.00
Deprivation Score (largest is most deprived)
50.00
60.00
Source: Whittington Health and LBH
The geographical element of this study suggests that the relationship between
socio economic status and increased likelihood of disability is consistent with
the findings of the national study that suggested that children from lower
income backgrounds are more likely to have some form of disability compared
to children from more affluent backgrounds. The local analysis uses
deprivation levels compared to socio-economic status, but the findings of
these reflect that the two different measures are compatible and can be
compared with a high degree of certainty.
Disability by diagnosis
Figure 4 describes the range of diagnoses across services. These data are for
recorded diagnoses and since there are a number of children that have more
than one disability there are more diagnoses than there are people.
The local authority data suggests that more children are diagnosed with
Autism (30%) than other disabilities. There are also high proportions of
children with learning difficulties and speech and language development.
Of those known to health services the profile of diagnoses suggests that the
disabilities that are addressed by health services vary considerably from those
recorded in the local authority data. Physical disabilities account for over 50%
of all diagnoses and only diagnoses of autism and children without a
diagnoses account for over 10% of the diagnoses.
35
Percentage
Figure 4: A comparison of diagnoses in children with disability between
Whittington Health and the London Borough of Haringey.
60%
50%
40%
30%
20%
10%
0%
LBH
Whittington Health
Source: Whittington Health and LBH
Once the Whittington Health and the London Borough of Haringey data are
combined autism still accounts for the highest proportion of all diagnoses
(28%). The next highest proportions are for learning difficulties (18%), speech
and language (14%) and Physical disability (13%). There are smaller
proportions of children with behavioural disorders and sensory impairments;
such as visual and hearing difficulties.
Table 10: Disability by diagnoses (Whittington Health and London
Borough of Haringey data combined.
Diagnoses
Number
Autism
1001
BESD
263
Communication
85
Downs
79
Hearing
123
Learning
673
Medical
132
Multiple
NA
Physical
475
SAL
485
Visual
97
Not known
185
Source: Whittington Health and LBH
Percentage
95% Confidence
Interval
27.8%
7.3%
2.4%
2.2%
3.4%
18.7%
3.7%
NA
13.2%
13.5%
2.7%
5.1%
25.0 – 30.6
4.2 – 10.4
-0.9 – 5.7
-1.0 – 5.4
0.2 – 6.6
15.8 – 21.7
0.5 – 6.9
NA
10.2 – 16.2
10.5 – 16.5
-0.5 – 5.9
1.9 – 8.3
The most robust data on diagnosis of disability is obtained from the Statement
of Educational Needs (SEN) database and since this collection is routinely
collected across the country it is possible to benchmark need against national
tables. However the data set is only a sample of the children with a disability
36
since it is restricted to children in schools. The SEN data set does suggest
that there are certain diagnoses that are more prevalent in school age
children in Haringey than the England Average, but this cannot necessarily be
extrapolated to the entire population of children in Haringey and the data is
not of a consistent level of quality to determine whether the SEN data is
representative of all children with a disability.
According to the Statement of Educational Needs data there are a number of
categories of disability that are more prevalent in Haringey than they are
nationally. The issue that remains unanswered is whether this data is
representative of all of the children with a disability that either do not reach the
threshold criteria for a SEN or are not picked up on SEN because they are
outside of the age range.
Disability by ethnicity
Since recording of ethnicity is poor in the health data it is not appropriate to
describe the profile of children known to Whittington Health separate to the
London Borough of Haringey data by ethnic group as the output could be
misleading. The combined data on ethnicity is described in Table 11. The data
suggests that the highest proportion of children where the ethnicity is
recorded is in those classified as Black (36.8%). Other ethnic categories
which are well represented are Other White (23.8%) and White British
(20.0%).
Table 11: Proportion of disability by ethnic group (combined)
Ethnic category
Number
Percentage
95% confidence
interval
White British
330
20.0%
15-7 – 24.3
Other White
381
23.1%
18.9 – 27.3
Mixed
112
6.7%
2.1 – 11.3
Asian
116
7.1%
2.4 – 11.8
Black
607
36.8%
33 – 40.6
Other
102
6.2%
1.5 – 10.9
Source: Whittington Health and LBH
Compared to the census there is a lower proportion of children with a
disability from a White British background registered with a statutory agency.
Conversely Children from Black and Other White categories are over
represented. There is little evidence to suggest that disability in children is
increased in ethnic groups, other than a few studies that have identified an
increased risk of disability in the South Asian community.56 It is possible that
the differences in prevalence rates between ethnic groups may be an artefact
of the data collection systems that fail to report ethnicity. The data have not
been controlled for deprivation which could suggest that poverty amongst
black groups is the determining factor in this study.
Data completeness
It has already been alluded to within this needs assessment that the quality of
the data is questionable due to blank data fields in the original data sets. It is
37
evidently clear that the data provided by Whittington Health has a large
percentage of incomplete data fields on many of the patient records. This is
particularly the case for the recording of ethnicity, gender, diagnoses and
postcode. The data from the London Borough of Haringey is generally of a
better standard but this is not consistent across all of the services that
provided data.
Table 12 describes the proportion of data records that were blank once the
data sets were combined. There are high proportions of blank records within
the gender, postcode and ethnicity fields which casts an element of doubt
over the findings in this report.
Table 12: Proportion of missing data elements in combined data set
Data element
Percentage Not recorded
Age
0.7%
Gender
33.9%
Postcode
34.1%
Diagnoses
5.1%
Ethnicity
45.0%
Source: Whittington Health and LBH
38
Section 3. Users views
In September 2012 Haringey Council’s Children and Young People’s Service
consulted parents, practitioners and service users about services for people
with disabilities in the borough through workshops and questionnaires.
Response rate:
9 children with disabilities, 15 parents of children with disabilities, and 9
practitioners responded to our consultation.
3 of the children with disabilities had autism, while 3 had learning disabilities,
and the rest did not state their disability.
12 of the parents/carers have children with autism, with 4 of these children
also having learning difficulties. 5 of them also reported that their children had
behavioural difficulties.
Of the other two parents/carers and one parent group who did not have
children presenting with autism spectrum disorders, two parents had children
with physical disabilities, and 1 had a child with a physical disability and
behavioural problems.
The key findings from the consultation are presented below:
Young people’s responses
Young people identified music, art, design, Sanjuro and scouts were activities
they would like to do after school. They also wanted to music, art, design,
skateboarding, staying at home, or working as things they wanted to do in the
school holidays.
Overall, although around half of young people liked activities especially for
people with disabilities, more of them also liked activities that everyone could
take part in. There was a split on if people liked their siblings to come with
them to activities, with equal numbers of young people who agreed, disagreed
or had no opinion.
The majority of service users agreed that their parents or carers listened to
their views and took them seriously, and that they helped to make decisions in
their family. Nobody disagreed with these views. 2/3rds of service users made
decisions about the activities they did outside of school.
The majority of people (around 2/3rds or over) looked forward to going to
school, found it interesting, enjoyed school activities and learns a lot at
school, and finally felt safe at school. All but one service user was aged
between 16-25. Most service users attended college.
Of the third who were bullied at school at some point, most of them were
bullied more than 3 times. Most people who were bullied told their parents.
39
The majority of young people who were consulted felt positive about their
future. Many were looking forward to getting jobs after finishing school, as a
part of their dreams for the future.
All but one of the respondents felt healthy. Two of the respondents strongly
disagreed or disagreed about liking exercise or that they ate healthy food.
When asked about improving health services, 5 people liked their healthcare
professionals who dealt with them and identified it as a good thing, but 3
people did not like healthcare professionals like GPs and psychologists and
felt it needed improving.
Most people did not need help to eat, change clothes or use the toilet, but the
one person who did felt that they got to choose who helped them.
Three young people felt that health, school and social care worked well
together, while three people had no responses.
There was a split about how people wanted their views to be listened to, with
some people suggesting surveys through the post, some through face to face
consultation and some through the internet.
When people were asked if they wanted to tell us anything else, most people
said ‘no’ or that they ate fruits. However, one person felt that their school had
been bad for them and that special schools “treat you like babies” and that
there was more bullying at special schools than at mainstream school.
Parent/carer responses
Parents reported they had used the following services in the last few months:
Health services
Dietitian or
nutritionist-5
Dentist-9
Social care services Education services
Short breaks-4
Mainstream school-5
Optician or eye
specialist-4
Paediatrician-4
Direct payments-4
Hospital-6
Practice nurse-1
Adaptations-1
Family support -4
GP-10
Parenting
Programme-2
No social care
services- 4
Day centre-1
Emergency health
care-2
Occupational
Therapy-3
Social worker-4
Respite
40
Teaching
assistant/learning
support-3
Education
psychologist-5
Support from a
SENCO-3
Special School-4
Over 15s residential
care-1
Pre school/ nursery
group-1
Pupil referral unit-1
Education- 1
Speech or language
therapist-8
Psychiatrist-2
Psychologist-5
Health visitor- 2
Community
equipment-1
Other-2
No health services-1
No response -1
No response- 4
Children’s Centre- 1
No response- 1
11 parents/ carers felt that co-location was a good idea, but two felt that colocation of services was a bad idea. Respondents seemed to feel that health
and social care services being in one place would be the most helpful
services to have in the same building.
In terms of feedback about the three strands of services, which are health,
social care and education services, parents were consistently more likely to
feel that education met all or most of their needs, were easy or very easy to
access and gave them more say. In contrast, social care was more often felt
to meet none of their needs, was difficult or very difficult to access, and was
second worst in giving people their say (the health service being the worst at
this by one more point). Health services were generally between education
and social care on all these indicators.
Parents felt that what worked well about the services they and their children
received include staff who were able to understand disabilities, such as the
dentist at Tynemouth Road, were helpful. Having continuity of care and a
good mix of mainstream and specialist education was favoured. The choice
enabled by direct payments was also felt to work well, and finally support from
voluntary sector organisation was perceived as working well. On the other
hand, challenges that were identified included health care professionals like
GPs not understanding autism, the delay in processing statements and
applications, and poor transitions between children’s services and adults
services was identified as a challenge. Accessing information was felt to be a
major barrier, with one parent feeling that information was not volunteered
and had to be sought out, which was problematic if you did not know what to
seek. More holistic thinking and better links and information sharing between
services were identified as things that parents felt they wanted.
Weight management and nutrition, behaviour management, and sleep
management were the main challenges that parents identified as affecting
their children’s individual health and wellbeing needs. Coping with puberty
and a child who was more able to overpower parents and run away as they
grew up was a problem for parents.
Practitioner responses
4 practitioners were from schools, a further 3 were from the Speech,
Language and Communication Team, and the remaining 2 professionals
41
included a specialist support worker from Haringey Council’s Autism team in
the CYPS directorate, and a young person’s practitioner.
Practitioners felt that current challenges included: a lack of resources in
relation to the number of children seen, the time it took to put together an
appropriate curriculum or response for each child compared to the number of
children staff had to deal with. There was also a lack of resources in monetary
terms to purchase appropriate equipment, including the lack of additional
funding to meet behavioural needs. When asked about capacity, Practitioners
in schools believed they potentially had adequate capacity, but needed more
resources to continue doing this effectively. The speech and language service
felt that they may have capacity, but one practitioner felt that individual case
loads were too high. However, all parties felt that there was a lack of suitable
places over all for young people.
When asked about working with other professionals, things that were working
well when health, social care and education worked together included TAC
meetings, if there was enough time and parents were supported to be
involved. Opportunities to improve this could be supported by joint working.
Shared IT systems, priority ranking and joint panel meetings were identified
as ways of improving communication. Finding the time to do this and to
meaningfully share data were the key challenges when it came to sharing
information. Co-location of health, social care and education services was a
well supported idea.
When asked what key skills professionals needed to have to work with young
people with disabilities, practitioners felt they needed continual professional
development to support them to understand about a wider range of
disabilities, mainstream education professionals needed to further their
knowledge, and information needed to be shared better and according to
clear protocols.
All practitioners did consult parents, but some did so more formally through
feedback questionnaires and stakeholder days.
Prior to undertaking the consultation for this needs assessment a previous
consultation exercise was undertaken as part of Haringey Council’s
development of a strategy for young people. The results have been included
in this needs assessment as they add to the picture of need as expressed by
young people with disabilities.
Consultation response
Disability
No
Yes
No. YP
consulted
474
88
%
77.3%
14.4%
42
Not answered
Grand Total
51
613
8.3%
Young people with disabilities provided the following feedback.
Service improvements / priorities
Being heard
“We need adults that sit down and listen. There should be surveys and
questionnaires to find out what we think”
Comments from Markfield “Most young people felt it was important for them to have a
voice and be listened to, but some young people challenged whether this really
worked in practice”
“Make sure disabled people are heard.”
Accessibility and facilities
“Ensure services for disabled people are always there and approachable.”
“More buses that wheelchairs can go on.”
“There should be special clubs mixed for people with disabilities and not. Just
because they have a disability doesn’t mean they can’t join in”
“Places are not easy for disabled people. Places don’t have disabled access,
like for people that can’t walk.”
“I want someone to go with me to a bus garage and support me into getting a
bus there.”
“More awareness of disabilities. More Guidance on what to do in the future.”
“I would like more activities for young people with different disabilities. More
after school clubs.”
Support
“What about children with disabilities and their families? If you have a brother
or sister with a disability. You need somewhere to go to have a break”
“Have more facilities especially in the hard times and help get jobs especially
for disabled people.”
“We feel that local community should stand up to offer us work experience
and training to help us gain a job in the future.”
“We need supported living and work experience”
43
“Working links, - like YTS scheme Links with local shops - taking young
people on for work tasters.”
“Training apprenticeship - accepting young people with lower grades.”
Joined up services
“better collaboration and communication between services post 19 so that
young people do not get lost in the system.”
“young people getting lost in the system.”
Experiences of living in Haringey
70% of the responses received from young people with disabilities described
their experience of living in Haringey as positive or neutral. Below are some of
their comments.
“Bureaucratic nonsense dominates over an individual's health and achieving
your personal best in every area.”
“Okay, support disabled people but do it a little better.”
“It’s quite dangerous in Tottenham, Wood Green, Enfield, Hornsey; there’s
gangs, they’ve got knives and guns”
“It’s good getting on the bus. I’ve got a freedom pass. I can scan it and go
wherever I want”
“They should just let them (disabled people) on to the bus. When the ramp
doesn’t work, they don’t let people on”
“There were bullies at the bus stop. They tried to take my freedom pass.
Without bullies I feel OK”
“It should be safe, but it’s not. You should have the right to feel safe at school
and on the street. More police on the street is good. When there is a higher
police presence, less chance of crime happening”
44
Section 4. Services
Haringey Clinical Commissioning Group (CCG) commissions a range of
health services for children and young people with disabilities on behalf of
people in Haringey over and above primary care. This includes acute
hospitals that see children with disabilities or complex health needs that need
A&E, outpatient and inpatient services including investigations and surgery as
required. In addition the CCG commission’s community based health services
to support children’s health and development outside of hospital. The main
provider of these community services is Whittington Health whose service to
children with disabilities is provided by paediatricians, therapists and specialist
nurses.
Children with complex disabilities are often referred to community services
shortly after birth, occasionally directly from hospital. Services are provided to
pre-school children at a local Child Development Centre, in children’s homes,
through children’s centres clinics and playgroups. School aged children are
seen in mainstream schools and special schools as well as at home and in
clinics. The services are jointly funded for children with additional needs,
particularly for Speech and Language Therapy.
Service planning for children with disabilities is co-ordinate through the multiagency Early Support panel, utilising national early support and team around
the child models. Many children are medically complex and are co-managed
by tertiary providers such as Great Ormond Street Children’s Hospital or the
Royal London Hospital.
NHS continuing care packages
These support children and young people with healthcare at home, minimising
dependence on hospital based care. Children and young people who need
home based treatment are assessed and supported by a children’s
community matron with bespoke care commissioned directly from the CCG
and delivered by a wide range of providers.
Local Authority
The Haringey Council has an integrated education and social care children
with disabilities and additional needs service. They work in partnership with
health services to identify and support children with additional needs and
disabilities both at school and at home.
Social care services
Children and young people with disabilities between birth and up to their 18th
birthday (or up to 19 if they remain in education) are eligible to receive support
from children’s social care services, if their development is significantly
impaired and they need to receive significantly more personal care and
supervision than a child without disabilities of similar age and circumstances.
Short breaks
45
Daytime, evening, weekend and overnight activities that provide a break for
parents and a social activity for children and young people are available from
a number of statutory and voluntary sector providers in Haringey. This
provision is highly valued by young people and their parents. Over the three
years of the Aiming High programmed the number of children and young
people with disabilities accessing sort breaks services increased from 230 in
2008 to over 650 in 2011.
Engagement with parents/carers has highlighted how much value is placed
upon the short breaks provision and the role it can play in preventing family
breakdown. Increased short breaks funding has been provided by Aiming
High and this has resulted in a decrease in the number of children with Child
Protection Plans, the number taken into care and a reduction in the number of
children living more than 20 miles from Haringey.
Direct payments
The Aiming High programme promoted the take up of Direct Payments. Since
2008 the number of families receiving Direct Payments has increased from 29
to 103 in 2011. The uptake of Direct Payments is concentrated in children and
young people aged 6 to 18 years old. Proportionally few families with children
under 5 choose direct payments.
When consulted about their experience of Direct Payments in 2009, those
parents who responded generally felt that they benefited from the flexible way
they could arrange their own services.
Work on market development is also ongoing to increase the range of
provides available for families to choose from.
Transition
There is multi-agency planning process, designed to plan for the transition of
children with disabilities from childhood to adulthood. This process begins
when the child is in Year 9 and a transition plan outlines the role of different
agencies moving forward. Planning includes consideration of benefits, further
education, higher education, employment, health issues, transport, housing,
leisure opportunities, social care services, direct payments and individualised
budgets.
Section 5. Discussion
46
Data
The findings suggest that the derived prevalence rate of children with
disabilities in Haringey is a valid estimate since it is consistent with other
measures that have previously been calculated. The validity has been
substantiated by comparing the demographic profile of children in this study
with studies that have been carried out both in the UK and nationally. The
evidence suggests that the profile of children derived in this needs
assessment is mainly consistent with the findings described elsewhere.
However, the profiling of children with disabilities presented in this report must
be viewed with an element of caution particularly in relation to gender. The
analysis fails to identify a gender split which is totally consistent with other
studies. Whilst girls are less likely to have a disability the proportion identifies
in this study is very low. This has also been hampered by the poor recording
of gender in some of the services in Haringey.
The analysis of the type of disability is likely to have been subjected to a
degree of recording bias through matching the medical diagnosis to a generic
disability category. To reduce bias in the future it would be advisable to
ensure that the process was carried out by personnel with a medical
background.
The prevalence rate that has been derived within this needs assessment is
consistent with those derived by other methods but there are considerable
differences between some of the estimates this is mainly due to
inconsistencies in the use of the definition of disability. Even though this report
requested data using the widest possible definition that would encapsulate
disability at both ends of the disability spectrum it is unlikely that data from
health services and from local authorities are likely to capture all of the
children with a disability. This may help to explain the low proportion of
females that have been identified in this report who may suffer from
disabilities that do not require intervention from statutory services. It has been
identified in a UK study that girls are more likely than boys to have autism at
the milder end of the spectrum which often goes identified. 57 This has led to
services being reluctant to identify autism in girls.
This report has also identified that a low proportion of children aged under 5
are known to statutory services. Of those that are identified a high proportion
of them are through health services, and are mainly for physical disabilities.
The majority of children with disabilities are identified once they start attending
schools. From a public health perspective it may be appropriate to screen for
disability at an early age to ensure early diagnosis and the best possible
outcomes for the child.
Local authorities are encouraged to screen children at school entry but it is
unclear as to how enforced this process is. It is debatable whether a
screening programme to identify young infants with disabilities could be
developed by the National Screening Committee or acceptable to the
population but since there is a link between children that are born prematurely
47
or with low birth weight and learning disabilities58 there may be a case to
develop a programme that initially screened this cohort of children.
It is important that the methodology behind different studies that have derived
a prevalence of children with disabilities is transparent and that as
researchers we take stock of the problems that have been identified. The
Thomas Coram Unit identified that the methodology that they used to derive
prevalence was hampered by defining which definition of disability measure
was being used which resulted in reporting bias and local authorities reporting
contrasting numbers of children. Conversely, statutory services should be
transparent about their ability to supply accurate data, since as this process
has shown it is not a straightforward process.
Parents of children that are not known to statutory services should be made
aware of the increased risk of premature death and associated lifestyle
choices through the media and through charities that support these children.
These campaigns should involve combating the stigma around children with
disability that may prevent parents seeking help and from registering their
children on disability registers and increasing their access to benefits.
The quality of data is likely to be responsible for some inconsistencies
between local data and what is known about the demographic profile of
children with disabilities. Apart from missing data fields there are also
inconsistencies in other areas which suggest that data collection and
recording methods need to be improved. The analysis suggests that the most
basic data collection methods are not followed and that basic information is
either not collected or recorded inappropriately. In order to make critical
decisions about which services to provide data quality needs to be improved
as decision making should not be made based on poor quality data.
Examples of poor recording include the recording of ethnicity where
inappropriate ethnic categories are used. The use of “English” as an ethnic
category is common place in the health data, along with the use of the country
of birth, which does not necessarily equate to the correct ethnicity. The
diagnosis field is available in the majority of records, but is often recorded in a
way that makes it difficult to ascertain the true diagnosis from the data. Many
of the records have very long, medical explanations for the diagnosis and do
not explicitly match to the actual disability that they have.
This last point may suggest that data should not be combined to describe the
diagnoses and possibly other variables because there is a possibility that
these children have fundamentally different conditions to those children only
known to the local authority. The methodology used in this needs assessment
involved painstakingly matching medical diagnoses to distinct disability
categories. This has resulted in the dilution of the variation in medical needs
of children in Haringey which may require specific interventions.
Following the legislation that was introduced by the Government in the Health
and Social Care Act in April 201359 public health is now repositioned within
local authorities and brings with it evidence based health care decision
48
making, a concept that has up to now been under utilised in some local
authorities. Public health now has access to more data which can provide a
better understanding of the number of children with disabilities and can start
to identify where there is unmet need in a more systematic way. This increase
in knowledge will ensure that local authorities and health professionals are in
a better position to plan for and provide appropriate services and health
advice that will improve the life chances of children with disabilities.
There are two issues that remain outstanding that hamper the credibility
behind methods of deriving prevalence of disability in children. These are the
need for a concise definition of disability that distinguishes children’s level of
disability and criteria for inclusion in each level and the basic requirement to
improve the quality of routinely collected data.
User views
The two consultations provide important information for commissioners and
providers of services to ensure services are accessible and available when
needed.
Overall children and young people and their parents and carers were satisfied
with services however parents did welcome an opportunity for services to be
co located.
Accessing information was felt to be a major barrier. Commissioners and
service providers should ensure information is accessible rather than parents
having to seek out information. In addition more holistic thinking and better
links and information sharing between services were identified as things that
parents felt they wanted.
49
Section 6. Recommendations
Most of the recommendations relate to data as this needs assessment has
been the first attempt to interrogate locally held data by the local authority and
health services.
Future data collection and analysis
While some services have good data collection methods within Haringey this
is by no means the case across all services in both health providers and other
departments in the local authority. The following recommendations aim to
bring all services up to a consistent level to enable more reliable analysis and
a more robust needs assessment:
1. All services should work towards harmonising their data collection such that
an agreed list of the type of disability is utilised across all agencies. This is
particularly the case in differences between health and council data such that
the council reports based on the type of disability and health services
categorise according to medical diagnosis, which makes it difficult to combine
the data sets.
2. A robust analysis relies on the collection of a minimum data set. All
agencies should agree to collect this minimum data set which should include
as a minimum; first name, second name, date of birth, gender, a full postcode,
ethnicity (using census categories) and type of disability.
3. Data should be stored in an appropriate database medium such as Excel or
Access and not in Word documents as sometimes happens at present.
4. It is clear from the analysis that spellings of names are inconsistent
between organisations. Care should be taken to ensure that data are
collected and recorded with due care by data custodians. Client details should
be updated and checked / cleaned regularly to ensure that they are up to
date.
5. Ideally a common identifier should be adopted to enable information from
different sources to be aggregated. Services should consider adopting an
NHS number to this end.
6.In order to identify children with less need that are currently not known to
statutory services local authorities should identify other data sources that will
potentially increase prevalence rates.
7. It is recommended that the methodology is repeated once the data quality
has been improved to investigate the impact that poor recording may have
had had on the analysis presented in this report.
50
Commissioning
1. Consideration should be given to co-locating services (health and the local
authority). This has obvious benefits to the children and parents in terms of
reducing the number of places they have to attend for appointments. In
addition there are benefits to the different staff groups to embed further multi
agency working within their day to day practise.
2. The local authority and the CCG should agree a minimum data set and
ensure this is written into service provider service specifications. This will
enable both commissioners to regularly review data and respond to changing
trends.
51
Appendix 1
National Policy Drivers
Secretary of State for Education (September 2012). Draft legislation on reform
of provision for children and young people with Special Educational Needs.
DfE (2012) Support and aspiration: A new approach to special
educational needs and disability: Progress and Next Steps
DfE (2011) Support and aspiration: A new approach to special
educational needs and disability - a consultation
DfES and DH (2007) Aiming High for Disabled Children: Better support
for families
DH (2011) NHS at home: community children’s nursing service
DH (2010) The Operating Framework for the NHS in England 2011/12
DH (2010) National Framework for children and young people’s
continuing care
DH & DCSF (2009) Healthy Lives, Brighter Futures
DH (2009) Healthy Child Programme: pregnancy and the first five years
of life
DH (2009) Healthy Child Programme: from 5-19 Years
DH (2008) Better Care: Better Lives. Improving outcomes and
experiences for children, young people and their families living with life
limiting and life threatening conditions
DCSF & DH (2005) Commissioning children and young people’s
palliative care
DH (2004) National Service Framework for Children, Young People and
Maternity Services –Standard 8: Disabled Children and Young People and
those with Complex Health Needs
DH (2010) The National Framework for Children’s Continuing Care
DfE (2008) BESD Guidance 2008 - The Education of Children and Young
People with Behavioural, Emotional and Social Difficulties as a Special
Educational Need1
1
www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Br
owsable/DH_4094607
52
Ofsted (2010) Special Educations Needs and Disability Review
DfES & DH (2003) Together from the Start – Practical Guidance for
professionals working with disabled children (birth to third birthday) and
their families.
ACT (2009) Right people, right time, right place: planning and
developing an effective and responsive workforce for children and
young people’s palliative care.
ACT (2003) A Guide to the Development of Children’s Palliative Care
Services
ACT (2003) A Framework for the Development of Integrated MultiAgency Care Pathways for Children with Life Limiting Conditions
DH (2004) Disabled Children and Young People and those with Complex
Care Needs
DH (2004) Making Partnerships work for Patients, Carers and Service
Users: A strategic agreement between the Department of Health, the
NHS and the voluntary and community sector.
NICE (2011) Autism: recognition, referral and diagnosis of children and
young people on the autism spectrum (CG 128)
NICE (2008) Diagnosis and management of ADHD in children, young
people and adults (CG72)
NICE (2009) Anti-social personality disorder: treatment, management
and prevention (CG77)
NICE (2005) Depression in children and young people: identification and
management in primary, community and secondary care people (CG28)
NICE (2009) Social and emotional wellbeing in secondary education
(PH20)
NICE (2008) Social and emotional wellbeing in primary education (PH12)
Outcomes for disabled CY
53
Appendix 2
Survey for parents of young people with disabilities
The Government’s green paper – Support and Aspiration: A New Approach to
Special Educational Needs and Disability was published in March 2011. It
describes a vision of better joined up education, health and social care
services that provide families with a package of support that reflects all of their
needs. In order to achieve this, local services will need to adapt and improve
the way they work together and as such are undertaking a needs assessment
to help highlight some of the priority areas for development. As a parent of a
child or young person with a disability or special educational need, we
recognise that your views and experiences, along with those of your child
need to shape this new way of working.
Please return to jen.johnson@haringey.gov.uk
1. Please indicate the primary disability category that relates to your
child:
Primary disability category
Autistic spectrum condition
Behavioural, emotional and social difficulties
Complex health needs / severe medical condition
Hearing impaired
Moderate learning difficulties
Multi-sensory impairment
Physical disability
Profound and multiple learning difficulties
Severe learning difficulty
Specific learning difficulty
Speech, language and communication needs
Vision impaired
)
2. Service delivery
We are looking at different ways of delivering health, education and social
care services for young people with disabilities and additional needs. One
of the ways of doing this is to have services health, education and social
care services co-located in the same buildings.
a. Do you think co-location is a good idea? (please circle)
54
Yes / No
b. Which of the following services have you used in the last 12 months?
(please tick)
c. Which services (if any) do you think it would be helpful to have in the
same building? (please tick)
Service
Used in last 12
months
()
None
Health
No health services used
Community equipment
Palliative care
Emergency health care
Dietician or nutritionist
Dentist
Optician or eye specialist
Podiatrist or chiropodist
Occupational therapy
Speech and language therapist
Physiotherapist
Psychiatrist
Psychologist
Paediatrician
Hospital
Health visitor
Practice nurse
GP
Other
Social care and family support services
No social care services used
Short breaks
Social worker
Received direct payments
Adaptations to your home
Family support
Parenting programme
Other
Education
No education services used
Education psychologist
55
Would be
useful to have
in the same
building
()
Special school
Mainstream school
Further education / college
Extended schools services (e.g. breakfast club)
Dedicated teaching assistant / learning support
Support from a SENCO
Tuition service
Pupil referral unit
Home teaching
Children’s centre
Pre-school nursery / playgroup
Other
3. Over the last 12 months, how well do you feel that services have met
your child’s and family’s needs?
Met none
of our
needs
Met few of
our needs
Met some
of our
needs
Met most
of our
needs
Met all of N/A
our needs
Health
Education
Social care
4. Overall how easy have you found it to access services?
Very
difficult
Difficult
Neutral
Easy
Very
Easy
Health
Education
Social care
5. What works well about the services you and your child receive?
6. What are the main challenges that you face dealing with services for
your child?
56
N/A
7. What are the main challenges you face with your child’s individual
health and wellbeing needs – are there things that you need that
would better support you?
Coping with puberty
Managing diet / weight
Managing sleep
Behaviour
management
Other
8. a. Do you feel that you have the opportunity to say what you think
about health, education and social care services?
No,
never
Rarely
Sometimes
Health
Education
Social care
b. What could services do to make this easier?
9. Is there anything else you would like to tell us?
57
Often
Yes,
whenever I
need to
10. About you
Age
Gender
Male
Ethnicity
Asian
Black
Mixed
Religion
No Religion
Christian
Buddhist
Hindu
Other
Sexuality
Heterosexual
I don’t know
Female
Other
White UK
White Other
Jewish
Muslim
Sikh
Rastafarian
Bisexual
Gay
Lesbian
I would rather not answer this question
58
Appendix 3
Pathfinder sites
Bromley and Bexley (Kerry Hancock) (738KB)
Calderdale (Philip Wells) (2577KB)
Cornwall and Isles of Scilly (Emma Gimson) (769KB)
Click here› for the dedicated website
Devon (Emma Gimson) (159KB)
Gateshead (Philip Wells) (670KB)
Greenwich (Stuart Bromwich) (630KB)
Click here› for the dedicated website
Hartlepool and Darlington (Emma Gimson) (87KB)
Hertfordshire (Laura Greatrex) (255KB)
Click here› for the dedicated website
Lewisham (Stuart Bromwich) (1258KB)
Manchester (Emma Gimson) (88KB)
North Yorkshire (Philip Wells) (101KB)
Northamptonshire and Leicester City (Emma Gimson) (673KB)
Click here› for the dedicated website
Nottinghamshire (Stuart Bromwich) (769KB)
Oldham and Rochdale (Emma Gimson) (733KB)
SE7 (Kerry Hancock) (3091KB)
Click here› for the dedicated website
Solihull (Kerry Hancock) (192KB)
Southampton (Laura Greatrex) (92KB)
59
Trafford (Emma Gimson) (177KB)
Wigan (Philip Wells) (78KB)
Click here› for the dedicated website
Wiltshire (Emma Gimson) (620KB)
60
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