AGENDA ITEM 5
BOROUGH OF POOLE
CHILDREN AND YOUNG PEOPLE OVERVIEW & SCRUTINY COMMITTEE
10 JUNE 2010
SERVICES FOR CHILDREN WITH AUTISM IN POOLE: REPORT OF THE HEAD
OF CHILDREN AND YOUNG PEOPLE’S INTEGRATED SERVICES
PART OF THE PUBLISHED FORWARD PLAN
STATUS Service Issue
NO
1.
PURPOSE
1.1
To provide an overview on the patterns of need of children who are diagnosed
as having autism,
To report on services for children and young people with autism and their
families in Poole.
1.2
2.
DECISION(S) REQUIRED
2.1
Members are asked to consider future policy direction for responding to the
needs of children who have autism.
Members are asked to decide if they would be willing to undertake awareness
raising training on autism and hold a focus group with parents/carers of
children with autism (suggestions from the Poole Parent/Carer Special Needs
Forum).
2.2
3.
BACKGROUND/INFORMATION
3.1
What is Autism?
Autism is a developmental disorder, characterised by the so-called ‘triad of
impairments in the areas of
 social and emotional understanding,
 communication and language,
 flexibility of thought and behaviour.
Autism has a strong genetic basis although the neurology and genetics of
autism are complex and not yet well understood.
Autism is often referred to as ‘the autistic spectrum’ as covers a variety of
subgroups such as classic autism and Aspergers Syndrome. There are two
main dimensions that affect children with autism, the severity of their autism
and their intellectual ability. The majority of children with an autistic spectrum
disorder (ASD) have some degree of learning difficulty, often with an uneven
profile of skills, and a third to a half do not develop enough speech to meet
their daily needs. While there are autistic children with special abilities, this is
comparatively unusual.
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The signs of autism begin to emerge before a child is three but children with
Aspergers Syndrome tend to be diagnosed later . Autism is a lifelong
condition for which there is no cure, but early intervention and ongoing
support are vital in helping children to maximise their educational potential
and independence.
In Poole we have a agreed process for diagnosing autism, involving health
and local authority professionals and using agreed international diagnostic
criteria.
3.2
Incidence of Autism in Poole
Younger children are typically diagnosed through the Child Development
Centre (CDC) at Poole hospital with older children going through the Complex
Developmental Disorders Team. The clear diagnostic pathway has led to an
earlier age of diagnosis for ASD conditions than in many other areas *(eg
Dorset).
Education data
Educational data indicate that there are 178 children in Poole schools known
to have autism:
o 118 are in mainstream schools, 56 in special schools and 4 home
educated
o 120 of children known to have ASD have a statement of SEN
A further 12 children under school age with An ASD diagnosis are known to
the Early Years specialist support team. Some of these children will have a
statement of SEN by the time they start school
With a school aged population of around 20,000, the 178 above represents
approximately 0.9 % of the school age child population which is broadly in line
with recent (2005) research on the prevalence of autism in the UK. The
actual number of children with a diagnosis of ASD may be slightly higher as
there may be children whose schools are not aware of the diagnosis so have
not included them in census data.
Poole, like the rest of the country, has seen a significant increase in the
diagnosis of autism over recent years, and there is ongoing debate about the
reasons for this. Increased awareness of autism, better diagnosis and
changing factors within society are all likely to be contributory factors. Some
of these children would in the past have been recognised as having SEN, but
without the specific diagnosis of ASD.
Health data:
Although data collection regarding local diagnostic rates is not yet systematic
and rigorous there is emerging evidence suggesting local rates of diagnosis in
the under 5 age group exceeds the accepted standards for national
prevalence.
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Firm diagnoses of autism in the pre-school population numbered 10 in 2008
and 10 in 2009. This is not inclusive of children with mild learning difficulties
who may also have features of autism or children who receive a diagnosis at
a later age.
Health estimates of incidence of autism in the 5+ age bracket are broadly in
line with national figures – i.e. around 1% of the population. Applied to the
whole child population 1% equates to about 270 children in Poole with ASD.
3.3
Provision for children with autism and their families
School provision
There are children with autistic spectrum disorders in all types of schools in
Poole: mainstream schools (including the grammars) , and all 3 of our
special schools. Around 20 children with particularly severe, complex and
challenging needs attend independent out borough schools, some on a
residential basis.
The needs of children with SEN will vary from those needing little or no
additional support to those needing intensive and highly individualised support
and care across the day. Poole aims to provide a continuum of provision to
match these varying needs.
Mainstream schools:
Around half of children with ASD who attend mainstream schools are
supported at school action or school action plus where schools make the
necessary individualised provision for children with advice and training from
agencies such as Educational Psychologists, special schools outreach and
NHS therapy services. Examples of ASD approaches used include visual
timetables and teaching of social skills.
Children with ASD in mainstream schools who have the most significant, long
term and complex needs will have a statement of SEN that outlines the
nature and level of support they need.
Poole special schools:
All children in special schools have statements. Children will ASD may be in
special schools where they also have such significant learning needs
(Winchelsea or Montacute) or behavioural needs (Longspee) that they are
unlikely to flourish in a mainstream school. Classes are smaller than in
mainstream schools and staff have experience and training in understanding
and teaching children with ASD.
Out-borough ASD provision:
Local day specialist ASD provision is made at Portfield, an independent
special school in Bournemouth which caters for children who are severely
autistic and require a highly individualised, autism-specific programme across
the school day within a predictable and highly structured environment.
(Currently 14 Poole pupils)
A small number of children (6) attend residential ASD settings. In most cases
this is because their needs are so extreme that their families are unable to
manage them on a daily basis. In a very few cases, the children have high
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functioning ASD but Poole mainstream schools were unable to meet their
needs.
Post 16 education
Increasingly the borough is being asked to place young people with ASD who
have been in mainstream schools in independent specialist post-16 provision
because local sixth form and college provision indicate they are unable to
provide for their needs. Currently 5 young people attend the Wing Centre in
Bournemouth.
Preschool provision
Pre-school provision is available via the Portage service, which works with
families of disabled children under 5 to develop the skills to help care for their
child’s particular needs and promote their development in the home and in
early years settings such as day nurseries or with a childminder.
Family Support
For children and families requiring advice, guidance or low-level additional
support there are a number of local voluntary agencies such as the Wessex
Autistic Society and Coping with Chaos that can provide a support and
assistance that many families find invaluable.
Parenting support programmes of various types are provided in the borough.
While many of these are not ‘autism specific’ many of the key messages can
work for children who have a milder form of autism.
A specific programme for parents and carers of autistic children called ‘Early
Bird’ (for young children) and ‘Early Bird Plus’ (for slightly older children) is
used in many authorities around the country. Officers are currently
undertaking a scoping exercise to examine the cost implications of introducing
a local Early Bird programme. A small number of Poole parents (5 p.a.) are
currently funded to access the Early Bird programme in Dorset.
There is also a range of additional support that can be accessed via a child or
young person’s local children’s centre or through a lead professional
completing a Common Assessment Framework (CAF) assessment. Locality
managers have the ability to provide services for children with short breaks
that provide the child with a rewarding experience, while giving the parent or
carer a break.
The local NHS Provider Trust operates the Child & Adolescent Mental Health
Service (CAMHS) which provides a wide range of supportive services to
families requiring help in caring for their autistic child. Very often the focus of
this work will be on behavioural management.
For children with particularly acute needs, either associated with disabling
impairments and societal barriers or a combination of the disability and factors
regarding family or carer circumstances, then Children’s Social Care may
become involved. For the vast majority of families receiving a service from the
Child Health & Disability Team (CHaD) or the Family Support Service (FSS)
this involvement is based on voluntary agreement. For a small minority there
will be concerns regarding abuse or neglect that may require a form of
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statutory intervention, such as the child being made subject of a protection
plan or even removed from a parent’s care under a court order.
Children’s Social Care can provide a family with Direct Payments to allow the
family to manage their own support needs or it can commission supportive
arrangements such as overnight placements in foster care or day or overnight
placements in a specialist residential facility such as Wessex Lodge, which is
operated by the Wessex Autistic Society.
Specialist Health Provision
Speech and Language Therapy (SALT) helps with the diagnosis of autism
and will also work with children and their families around specific
communication or swallowing needs.
Physiotherapy is available via the Child Development Centre.
Occupation Therapy (OT) can help with aids and adaptations to housing, help
other professionals manage environments to enhance learning or caring and
advise on moving and handling issues. A specialised field of OT looks at the
‘sensory needs’ of autistic children –some of whom will seek sensory input,
whether this be touch, noise, taste, etc, others will be hypersensitive and
require minimised stimulation.
3.4
Identified Gaps in Provision
SALT, OT, Physiotherapy in Schools
There are a number of issues regarding the amount of these services
available in special school settings and the way in which these services have
historically been allocated, which sees different levels of resource provided
across special schools in Poole and Bournemouth. Discussions between PCT
commissioners and Special School Heads are ongoing regarding solution to
the perceived problems.
School Provision:
While there are children with ASD in all 3 of our specials schools, Poole does
not have a specialist mainstream base for higher functioning children and
young people with ASD. The need for a secondary base is a priority as the
transition to secondary school can be particularly stressful for young people
with ASD. Such a base would cater for a small group of around 12 ASD pupils
who have academic ability within the average range but who need more
specialist and intensive support than is normally available in mainstream
schools. Neighbouring LAs (Bournemouth and Dorset) have ASD bases but
Poole pupils are unable to get places as they are always full. Currently pupils
who would benefit form such provision either attend special schools or receive
support in mainstream schools . A possible host school has now been
identified but resources would be needed to set up and staff the base.
Running costs are likely to be around £200K pa for such a base, although it
is envisaged this would be offset over time by reduced expensive out borough
placements.
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3.5
Parental views:
Parents of children with SEN are represented on the Parents and Carers’
SEN forum. They have requested that


Overview and Scrutiny Group consider holding a focus group of
parents and carers to elicit their views on local services for children
with autism
CYP Integrated Services staff offer a training session about autism to
O&S members
4.
FINANCIAL IMPLICATIONS
4.1
Out borough day and residential school placements for children with ASD cost
the Local Authority approximately £1.3million per annum . Costs vary from
26K to £220K a year per pupil.
Expenditure on providing social care support to families with autistic children
is impossible to quantify as our social care financial systems do not
differentiate between diagnostic conditions of different children. Primary areas
of expenditure provide short break care (respite) and provide parents or
carers with direct payments to purchase their own support arrangements.
The borough also provides accommodation for several autistic children in our
care at a cost of around £50k per annum per child.
4.2
5.
LEGAL IMPLICATIONS
5.1
The Disability Discrimination Act:
The DDA was passed in 1995 to introduce new measures aimed at ending the
discrimination which many disabled people face in their everyday lives. The
DDA 2005 made important changes to the scope of the original legislation,
including creating a legal duty for public authorities to actively promote
disability equality. Together, the legislation provides disabled people with
rights and it places duties on those who provide services, education and
employment.
The DDA defines discrimination in a number of ways and outlines four specific
types of discrimination: direct discrimination, failure to make reasonable
adjustments, disability-related discrimination and victimisation. Children’s
services work hard to ensure that the needs of autistic children are catered for
in line with this DDA duty.
4.2
Fulfilling and Rewarding Lives
The Autism Act 2009 brings a new legislative duty on public authorities to
improve services for adults with autism. The guidance identifies three key
strategic areas of focus: Awareness, Diagnosis and Effective Services.
Children’s services are taking steps to improve the experience of all disabled
children, including those who are autistic, as they move through the transition
to adulthood. New transition protocols and pathways will introduce person
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centred planning approaches to ensure that individuals move to adulthood
with the best chance of success and achieving their potential.
6.
RISK MANAGEMENT IMPLICATIONS
6.1
The rise of diagnosis rates and the increasing public awareness of autism
have seen pressures build on services to meet need.
Pressures to meet ‘acute’ or tertiary level of need can divert resources from
early intervention approaches, leading to later increases in acute problems.
6.2
7.
EQUALITIES IMPLICATIONS
7.1
Children with disabilities should not be disadvantaged from accessing
services or realising their potential. It is therefore necessary to provide a
range of serviced for children with ASD to try and redress any inequalities
resulting from the condition. Any such services need to ensure that they are
delivered in an equitable and accessible way that is accessible to pupils on a
needs basis.
8.
CONCLUSIONS
8.1
Autism is an often disabling condition thought to affect around 1% of the child
population. The severity of symptoms can differ greatly across the spectrum,
with some children requiring highly specialised care and others requiring
relatively little support to function well in mainstream settings.
8.2
Children’s Services in Poole has a continuum of provision to meet the varied
and often complex needs of children with autism and their families. Providing
services for this group of children and young people can be challenging and is
often costly at the extreme end of need.
VICKY WALES
HEAD OF CHILDREN AND YOUNG PEOPLE’S INTEGRATED SERVICES
Contact officers:
Mary Chamberlain (Strategy Manager SEN)-262259
David Gillespie (Strategy Manager, Children with Complex Needs)-261779
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