AGENDA ITEM 5
BOROUGH OF POOLE
CHILDREN AND YOUNG PEOPLEOVERVIEW & 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 NO
STATUS Service Issue
- PURPOSE
1.1To provide an overview on the patterns of need of children who are diagnosed as having autism,
1.2To report on services for children and young people with autism and their families in Poole.
- DECISION(S) REQUIRED
2.1Members are asked to consider future policy direction for responding to the needs of children who have autism.
2.2Members 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).
- 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.
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 haveautism:
- 118 are in mainstream schools, 56 in special schools and 4 home educated
- 120of 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 beslightly 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.
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 broadlyin 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 orschool 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 complexneeds 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 childrenwho 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 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 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.
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
- 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.
4.2Expenditure 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.
- LEGAL IMPLICATIONS
5.1The 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 centred planning approaches to ensure that individuals move to adulthood with the best chance of success and achieving their potential.
6.RISK MANAGEMENT IMPLICATIONS
6.1The rise of diagnosis rates and the increasing public awareness of autism have seen pressures build on services to meet need.
6.2Pressures to meet ‘acute’ or tertiary level of need can divert resources from early intervention approaches, leading to later increases in acute problems.
7.EQUALITIES IMPLICATIONS
7.1Children 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
8.1Autism 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 bechallenging 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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