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Adults with Autism

Introduction

This needs analysis covers young people and adults, aged 18+, with autism.

 

The International Classification of Diseases (ICD-10) classifies Autistic Spectrum Disorder as:

“A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls.”

 

The terminology “autism” is used as an umbrella term for all conditions on the Autistic Spectrum, including Asperger’s Syndrome. This is the terminology used in the national autism strategy, Fulfilling and Rewarding Lives (Department of Health, 2010), and adopted by key autism representative organisations, including the National Autistic Society.

Autism is known as a spectrum condition because the difficulties it causes can range from mild to severe. The three main areas of difficulty shared by all people with autism are known as “the triad of impairments”,(Wing and Gould, 1978) and these are:

 

  • Social communication (e.g. problems using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice)
  • Social interaction (e.g. problems in recognising and understanding other people’s feelings and managing their own)
  • Social imagination (e.g. problems in understanding and predicting other people’s intentions and behaviour and imagining situations outside their own routine)

 

People with autism may experience heightened or reduced sounds, touch, tastes, smells, light or colours. They often prefer to have a fixed routine and can find it difficult to cope with change. Many people with autism may also have other conditions such as attention deficit hyperactivity disorder (ADHD), a learning disability or dyspraxia.

The characteristics of autism vary from one person to another. As a result of interaction between the three main areas of difficulty, the sensory issues and the environment, people with autism may have:

 

  • increased anxiety levels
  • need for routines, sometimes having a compulsive nature
  • difficulties transitioning to a new activity
  • difficulties generalising skills learnt in one situation to another
  •  special interests
  •  the ability to be highly focussed when on a specific task,
  • difficulties with self-awareness, understanding and expressing their own needs.

 

Leo Kanner (1943) was the first person to describe and name a pattern of behaviour he observed in a small group of young children, which he termed early infantile autism.  A person given this diagnosis will be on the more severe end of the spectrum and will probably (but not always) have learning disabilities too. 

Asperger syndrome (also known as Asperger’s disorder or simply Asperger’s).  Asperger’s syndrome is mostly a 'hidden disability', and people will Asperger’s will very often fail to display any visible signs of autism, and yet present the same Triad of Impairments.  People with Asperger’s syndrome have fewer problems with speaking and are often of average, or above average, intelligence. They do not usually have the accompanying learning disabilities associated with autism, but they may have specific learning difficulties. These may include dyslexia and dyspraxia or other conditions such as attention deficit hyperactivity disorder (ADHD) and epilepsy

 

Facts, Figures, Trends

 

There have been no epidemiological studies into autism in adults, hence no prevalence data specifically for adults. The prevalence rates established over the years from epidemiological studies have been only for children and this have been applied in this section. However this is unlikely to give the exact prevalence as many adults are not in contact with services and remain unknown. Also in the past, due to a lack of understanding about autism, adults over a certain age may have been given an incorrect diagnosis as having learning disabilities or behavioural problems.

The variation in defining the borderlines of the sub-groups on the autistic spectrum may also influence the prevalence rate (Wing 1996). The ICD-10 definition is used by clinicians to diagnose people with the Triad of Impairments as having either autism or atypical autism.  This means that an investigation into the number of people with Asperger or Kanner syndrome is problematic.

As there are no clear boundaries between typical autism from other autistic spectrum disorders, including Asperger’s syndrome, the best estimates of prevalence of autistic spectrum disorders are those based on studies focussing on the whole spectrum and not just specific sub-groups.  The National Autistic Society states that the best estimate of prevalence rates is 1 per hundred children, regardless of functionality and including people with Asperger’s syndrome. 

Using  figures from Office for National Statistics (ONS) represented in Table1 below shows the estimated figures for the current numbers of adults, aged between 18+, with autism in England, the East of England and Bedford Borough plus an estimate of how many of those may have Asperger syndrome, and higher functioning autism, using the Ehlers and Gillberg criteria:

 

Age

Population

Autism (1:100)

Asperger’s Syndrome

(36:10,000)

Higher Functioning Autism

(35:10,000)

England

All ages

54,227,900

542,279

195,220

189,798

 

18-64

33,158,100

331,581

119,369

116,053

 

65+

9,530,900

95,309

34,311

33,358

East of England

All ages

6,001,100

60,011

21,604

21,004

 

18-64

3,577,600

35,776

12,879

12,522

 

65+

1,140,800

11,408

4,107

3,993

Bedford Borough

All ages

162,700

1,627

586

569

 

18-64

98,400

984

354

344

Source:  PANSI,2014

 

Projecting Adult Needs and Service Information (PANSI) and Projecting Older People Population Information System (POPPI)  has estimated future prevalence rates of autism in adults, by applying ONS population projections to the 18 + age group, and table 2 below summarises the future trend in Bedford Borough:

Table 2

 

Years

Age

2014

2015

2020

2025

2030

18-24

144

144

140

136

154

25-34

202

203

218

224

218

 35-44

215

215

219

229

242

 45-54

231

235

232

223

227

 55-64

180

182

207

226

225

 65-74

145

150

161

167

191

 75 and over

114

116

134

170

194

Total

1231

1245

1311

1375

1451

Source: PANSI and POPPI, 2014

 

The biggest increase will come from people who are 65 and older, increase of 70% for 75 years and older between 2014 and 2030.

 

Local Offer – Children and Families Act 2014

 

The Children and Families Act 2014 introduced wide ranging reforms to improve outcomes for children and young people with special educational needs and disabilities (SEND) and their families. The changes were introduced in September 2014 and included:

 

  • The publication of information in one place on the range of local services available for children and young people with special educational needs and disabilities and their families called the Local Offer.
  • A new integrated assessment process for children and young people with special educational needs and disabilities aged 0-25, which may lead to an Education, Health and Care (EHC) Plan. This replaced Special Educational Needs (SEN) Statements and Learning Difficulty Assessments (LDAs).
  • The option for families with an EHC Plan to request a Personal Budget for relevant provision in their EHC Plan.

 

Figure 1

People aged 18-64 in Bedford Borough predicted to have autistic spectrum disorders, by age and gender, projected to 2030

Aut1

 

Source PANSI and POPPI, 2014

Gender

Using the criteria outlined above, PANSI and POPPI have also estimated the prevalence of autism in Bedford Borough by gender to 2030, as shown below:

Table 3

 

 

Years

Gender

Age

2014

2015

2020

2025

2030

Male

18-64

871

878

913

932

958

65+

229

236

261

299

342

Female

18-64

100

101

104

106

108

65+

30

31

34

38

43

 

Source: PANSI and POPPI, 2014

The data from PANSI and POPPI supports the evidence that the prevalence of autism is higher in males than in females, although the reason for this remains unclear.  In an epidemiological research Wing (1981) found that among people with high-functioning autism or Asperger syndrome, there were as many as fifteen times as many males as females. The reasons for the difference in male and female prevalence may be genetic, male susceptibility to organic damage from disease, or simply that females have “coping” mechanisms which mean that many females are never diagnosed with autism.

Ethnicity

No evidence is available to suggest that autism is more prevalent in any particular ethnic group, but there do appear to be disparities between different ethnic groups. In the documentation of autism (Mandell et. al, 2009). Goodman (2010) argues that social and cultural influences on epidemiological assessment measures are the most likely explanation for any observed racial and ethnic variations in autism prevalence and diagnosis. 

Given general demographic information (28.5% BME population) we can estimate that around 363 adults aged 18 and over from ethnic minorities will have autism.  Issues of diagnosis, cultural attitudes toward autism, culturally sensitive services need to be considered in implementing the strategy

Learning Disability and Autism


People with autism can have different 'degrees' of learning disability, affecting all aspects of their life. Some people will be able to live fairly independently - although they may need a degree of support to achieve this - while others may require lifelong, specialist support.

 

The report The Estimated Prevalence of Autism among Adults with Learning Disabilities in England  concludes: We estimate that between 20% and 33% of adults known to Councils with Social Services Responsibilities for people with learning disabilities also have autism

 

Table 4

Age

Population

Autism

(1%)

Autism with learning disability (20-30%)

All ages

161,400

1614

322-484

18-64

 

98,400

987

197-296

65+

28,700

287

57-86

Source: Improving Health and Lives (IHAL, Learning Disabilities Public Health Observatory), 2014

Emerson, E. &  Baines, S. (2010) The Estimated Prevalence of Autism among Adults with Learning Disabilities in England, IHAL. Available at: http://www.improvinghealthandlives.org.uk/uploads/doc/vid_8731_IHAL2010-05Autism.pdf

Bedford Borough Council’s internal data collections for the purpose of Autism Self-Assessments in 2012 and 2013 (the most up to date Autism Self Assessment) identified following information about people with autism known to social services, as summarised in Table 5.

Table 5

Team

Number known to LA

In paid job

Living at own home

Living with family

In residential

In nursing

Within LA

Out of area

With personal budget

LD

230

2

17

21

191

0

141

50

19

PD

 

 

 

 

 

 

 

 

 

OP

 

 

 

 

 

 

 

 

 

Sensory

 

 

 

 

 

 

 

 

 

CMHTs

15

0

1

1

14

0

2

13

1

Managing transitions from children’s to adult services is critical to minimising new residential placements as significant demand is anticipated in the next few years.

 

The Adult Learning Disability Team reports that 57 children with LD aged 14-18 are expected to move to adult services i.e. a minimum of 10 per year for the next 5 years (2014-2019).

 

Many of these are supported in specialist residential educational settings. These are at high risk of becoming new high cost residential clients unless their transitions are carefully planned and managed.

 

Out of 57 young people transitioning to adult services, following Table 6 identifies young people known to services who have autism.

 

Table 6

Year

Know Autism Cases

 Predicted Needs Summary

2014/2015

4

respite and accommodation

2015/2016

7

homecare 

2016/2017

4

respite , homecare

2017/2018

4

home care, accommodation, education

2018/2019

5

not identified yet

Table 6: Known young people who have autism transitioning to adult services.

Forward planning for transition is already critical and this must remain a priority for the future.

1.    Available data indicates that total number of adults with autism in Bedford Borough is in the range of 1231-1262, with a projected increase to 1451 by 2030, in line with demographic increase.

 

2.    The biggest increase will come from people who are 65 and older, increase of 70% for 75 years and older

 

3.    There is a disproportion in diagnosis between males and females. Because of male gender bias, females are less likely to be identified with autism.

 

4.    There is a significant gap between the number of people who are know to BBC 65+ social work team (0) and expected level of autism in this cohort (278).

 

5.    It is important that the services do not overlook people with autism who come from BME group, given the ethnic make-up of local population.

 

6.    Although numbers of young people with autism who are/will be transitioning to adult services is comparatively low, the specialist level of support required for those young people should not be underestimated.

 

Health needs

 

Autism is a developmental disorder; it is not a learning disability or a mental health problem.  However, some people with autism will have an accompanying learning disability and/or a mental health condition.

 

A large number of medical conditions, psychiatric disorders and behavioural and motor dyscontrol symptoms are associated with autism and Asperger’s Syndrome.  These include:

 

 

We can also assume that adults with autism and a learning disability share some of the same co-morbid conditions as adults with a learning disability, which are:

 

 

 

Current Activity and Services

 

1.    Universal services

Many people with autism may not be eligible for specialist health care or social care support, and live independently within the community.  It is important that general community services (universal services) are equipped with the knowledge and skills to support all members of community, people with autism included. 

 

2.  Specialist services

a. East London Foundation Trust (ELFT

The East London Foundation Trust is the provider of mental health and learning disability services in Bedford Borough. ELFT will be working in 2015/16 to review the specialist and autism services in order to provide even better support for people with autism.

 

Small numbers of adults with a learning disability and autism may access these services:

 

 

Name Description Location
 IST (Intensive Support Team)  IST provides a predominantly community based service for people with a learning disability and who have additional mental health needs or present with challenging behaviour.  In addition, to the community outreaching support, there are 4 inpatient beds, based at The Coppice, Bromham, that are staffed as part of the service  The Coppice, 2 The Glade, Bromham
 Specialist Community Health Care Team  This service provides a range of therapies to people with a learning disability.  The service has a single point of access which then agrees a treatment pathway.  The team includes speech and language therapy, dietetics, arts psychotherapies, psychology, sensory  Clinical Resources Centre, Twinwoods
 Specialist Medical Department  The medical team works as part of the inpatient services, the specialist community health care team, and provides outpatient services to people with a learning disability  Clinical Resources Centre, Twinwoods

Wood Lea Clinic

Provided by SEPT

Low secure unit.  10 bedded forensic unit commissioned through Specialist Commissioning Group, East of England   5 The Glade, Bromham

 

b.   Bedfordshire Adult Autism Service

 

ELFT is the provider of the local Adult Autism Service.

 

The Bedfordshire & Luton Adult Autism Service became operational with effect from 10th July 2013 with an interim multi-disciplinary team, the team recruited to full establishment in September 2014 and consists of:

 

  • Consultant Psychiatrist 0.3 whole time equivalent
  • Specialist Nurse/ Team Lead 1.0 whole time equivalent
  • Clinical Psychologist 0.6 whole time equivalent
  • Occupational Therapist 0.5 whole time equivalent
  • Clinical Support Worker 2.0 whole time equivalent

 

The immediate aim was to develop the service to be compliant with statutory requirements of the Autism Act 2009 and support the values and aims of Fulfilling and Rewarding Lives (Department of Health 2010).

This was achieved through the provision of local assessment, diagnostic and post diagnostic services for adults who may have autism and through effective collaboration with local commissioners and other service providers to help improve outcomes for people with autism in accessing generic services.

The Adult Autism Service provides services for adults who are registered with a Bedfordshire & Luton General Practitioner by:

 

  • Undertaking comprehensive diagnostic assessments to confirm / exclude Autism Diagnosis.
  • Suggest recommendations to General Practitioner/ referrer with regards to appropriate services for individuals who are not diagnosed as being Autistic.
  • Provide comprehensive post diagnostic assessments and short term clinical interventions for people with Autism who are unable to access mainstream health and social care provision for example:

 

  • Sensory Processing
  • Anxiety Management
  • Psycho-education
  • Activities of daily living
  • Mental Health Monitoring
  • Supporting people with Autism to enable access to appropriate local mainstream services, to include signposting to other agencies.
  • Work with existing learning disability and mental health services to ensure that there is adequate recognition of Autism in their client groups, providing specialist consultation, training and awareness.

 

Data from 1st April 2014 to 31st October 2015 for patients residing in Bedford Borough locality.

Referrals Received

Referrals Accepted for Diagnostic Assessment

Referrals Accepted for Post-Diagnostic Intervention/Signposting Only (already diagnosed)

Diagnostic Assessments

Completed

Awaiting Diagnostic Clinic Appointment

Autism Diagnosis Confirmed from Assessment

111

90

21

90

30

31

Source: Adult Autism Service database

c.            Autism Bedfordshire

 

Autism Bedfordshire is an independent charity that provides emotional and practical assistance and support to people with autism and their families in Bedford Borough.  Autism Bedfordshire provides the following services:

 

  • Adult Skills Course in Bedford to teach employment skills, social communication skills, life and leisure skills;
  • Adult Social Group to offer social activities which will develop social skills and confidence, encouraging the individuals to take up these activities outside of the group;
  • Supported volunteering and work experience for adults with autism;
  • Extended telephone helpline to support adults with autism, their families and professionals;
  • Training for organisations, schools and businesses so they can support and work with people with autism;
  • Developing and maintaining a directory of services for adults with autism, offering signposting and information on a variety of services that the adults can access themselves.

 

a.    Health Facilitation Team

A team which provides support for people to access generic health care services.  Available from 1 October 2011, the service is provided by ELFT and has staff co-located with the Adult Learning Disability Team at Bedford Borough Council, and staff based in Bedford General Hospital. 

Local Views

 

Since the introduction of the Autism Act in 2009 there has been constant local stakeholders’ engagement lead by the Local Authority and the NHS.

 

a.    Initial Consultation Workshops

 

NHS Bedfordshire, Bedford Borough Council, Central Bedfordshire Council, with Autism Bedfordshire held a series of consultation events and workshops in 2009/10 on the development of a local strategy for adults with autism in Bedfordshire.  The following recommendations for future services for autism were made:

  • Work with local colleges and providers
  • Adult services and children’s services working together or transitions
  • A diagnostic service to cover all age groups
  • Directory of local information
  • Information and guidance for parents (parent support groups)
  •  Post diagnostic service (e.g. family support workers)
  •  Development of employment support and support around transition

 

b.    Fulfilling Lives Autism Partnership Board Snapshot Survey

 

A snap shot survey was conducted in February 2013 about local Autism Partnership Meetings and the overall delivery of the Autism Strategy so far.

 

Out of total attendance at the February 2013 partnership meeting, 44 ( 50% local professionals, 50% people with autism or carers) people took part in the survey:

 

  • 64% of people rate the partnership meetings as excellent or good
  • It is important to have separate forum for Autism (35%), which is a good source of information (28%) with as many people with autism involved as possible (19%)
  • 62 % of respondents believe that the local response to the strategy was excellent or good
  • 77% of respondents said that local autism training is excellent or good, and 57% of those who attend partnership said that access to training was excellent or good

 

The main priority for 2013/2014 is the establishment of the diagnostic and support service

 

As a result of the Autism strategy, 2012 saw progress in the area of training provision, and availability of support from Autism Bedfordshire

 

c.    Autism Bedfordshire Survey

 

(available at http://www.autismbedfordshire.net/wp-content/uploads/2014/09/The-Perception-of-Autism-Services-across-Bedfordshire.pdf)

  • The majority of adults with autism who responded to the survey do not appear to be living independently as they are in the main; living with their parent/care and not in paid employment.
  • The majority of those adults do not have a social worker, presumably because they do not meet the assessment criteria. As these figures are reflective of national figures demonstrated by the National Autistic Society they are considered to be representative of the county.
  • The survey highlighted three areas of development across all three separate demographics with employment support ranked highest in terms of needing the most development. One contributing factor to this is the limited autism specific employment support for adults who do not have a social worker or a learning disability. Relationship and social skills were also identified as key areas for development as they are considered the bedrock on which to build further skills upon.
  • Adults identified confidence, employment and the ability to make friends as primary hurdles to leading a fulfilling and rewarding life. Parents and professionals supported this opinion but went further to suggest that specialised provision needs to be increased and diversified to meet those needs.
  •  Professionals and parents of adults with autism recognised the need for greater autism awareness in the wider community and services that work with adults, particular note was given to the job centre and health professionals.

 

d.    Fulfilling Lives Autism Partnership Board (since June 2013 Think Autism Partnership Board)

 

There has been ongoing feedback collection from each autism partnership board meeting. This information suggests following messages

Aut2

 

Autism3

 

Main priorities for 2015-2018, as identified by the partnership were:

 

  • Employment, training and education
  • Criminal Justice System
  • Diagnostic Services and Social Services relationship
  • Sustainability of the partnership board

 

National & Local Strategies (Current best practices)

 

1.    Valuing People – A New Strategy for Learning Disabilities for the 21st Century (Department of Health, 2001) - the Government’s national strategy for people with learning disabilities, but which makes key references to the barriers faced by people with autism

 

2.    I Exist the message from adults with autism in England (The National Autistic Society, February 2008)

 

3.    The Autism Act 2009 - sets out the Government’s commitment to improve inclusion and ensure adults with autism are able to participate fully in society.  http://www.legislation.gov.uk/ukpga/2009/15

4.    Fulfilling and Rewarding Lives (Department of Health, 2010)  – the Government’s strategy for adults with autism in England http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369

5.    Implementing Fulfilling and Rewarding Lives (Department of Health, 2010)- Statutory guidance for local authorities and health to support implementation of the autism strategy

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_122847

6.    Towards Fulfilling rewarding lives (Department of Health, 2010) -  the first year delivery plan for adults with autism in England http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_115115

7.    Think Autism Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update.https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/299866/Autism_Strategy.pdf

8.    Personalisation briefing: Implications for people with autistic spectrum conditions and their family carers (National Autistic Society/SCIE, 2010) http://www.scie.org.uk/publications/ataglance/ataglance21.asp

9.    Good practice in supporting adults with autism: guidance for commissioners and statutory services (Government Office South West/NHS South West, 2009)  http://www.autism.org.uk/Working-with/Social-care-and-support.aspx

10.  Supporting adults with autism: a good practice guide for NHS and local authorities (National Autistic Society, 2009) http://www.autism.org.uk/Working-with/Social-care-and-support.aspx

11.  NICE Guidance (3 clinical guides, and quality standard)  http://www.nice.org.uk/

12.  Transforming care: a national response to Winterbourne View hospital (Department of Health, 2012) https://www.gov.uk/government/publications/winterbourne-view-hospital-department-of-health-review-and-response

13.  Autism: a guide for criminal justice professionals (NAS, 2005)  http://www.autism.org.uk/working-with/criminal-justice/autism-a-guide-for-criminal-justice-professionals.aspx

14.  Green Light Toolkit ( A guide to auditing and improving your mental health services so that it is effective in supporting people with autism and people with learning disabilities, NDTI, 2013) http://www.ndti.org.uk/news/national-news/green-light-toolkit/

 

What is this telling us? What are the key inequalities? What are the unmet needs/ service gaps

 

Autism remains national and local priority.

Nationally, there have been a number of best practice guides, NICE guidelines and associated training packages developed in the course of last three years which could and must (NICE) inform local work.

Local main strategic documents fully support autism via associated work streams (mental wellbeing, lifestyles, wider determinants of health, and 5 out of 6 aims of Healthy Borough work theme).

                                                                                                                                              

Valuing People Now, the Government’s strategy for people with learning disabilities, recognised that people with autism are some of the most excluded and least heard people in society, with poor health outcomes.  Whilst action taken forward under Valuing People Now will benefit adults with autism who also have a learning disability, more needs to be done to support the health needs of adults across the whole spectrum.  According to the National Autistic Society report I exist: the message from adults with autism in England (2008), this lack of support has serious consequences:

 

 

Push for Action clearly identified areas where people with autism were not supported:

 

  • Lack of awareness and understanding of autism
  • Lack of social care support in areas such as meal preparations, money management, personal care
  • Lack of employment opportunities
  • Lack of central government financial support to implement the Autism Strategy

 

Think Autism encourages Autism Aware Communities - Think Autism community awareness projects should be established in local communities and there will be pledges/awards for local organisations to work towards.

 

Think Autism show three areas where people with autism needs support:

           Equal part of local community

           Right support at the right time

 

Developing independence

The Government’s  and local vision for adults with autism is that:

 

All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them.  They can get a diagnosis and access support when they need it, and they can depend on mainstream public services to treat them fairly as individuals, helping them make the most of their talents.”

Local Progress

 

Since 2010, there has been excellent progress in Bedford Borough, in cooperation with Bedfordshire and Luton and Clinical Commissioning Groups and two Bedfordshire Councils, which improved services for people with Autism in response to the national autism strategy in 2010.

a.    Local Strategy Arrangements

  • Autism Action Plan and Autism Partnership was launched in January 2012
  • Bedford Borough and Bedfordshire Clinical Commissioning Group  have a named commissioning officer responsible for Autism Services

 

b.    Training

  • Workforce Development departments worked with commissioners and colleagues across Bedfordshire in designing the training pathway
  • Three tiers of training are in place
  • A wide range of external Private, Voluntary and Independent care provider organisations and South Essex Partnership Trust have had access to the training programme supported through the Council’s and NHS funding ( compared to almost non-existent Autism training before the strategy)
  • Feedback received from training evaluations indicates a consistent high standard of delivery with “excellent’ rated assessment. All evaluations are regularly and closely monitored to ensure that the quality of the training provided is maintained.

c.    Diagnosis and Assessment

  • Comprehensive local diagnostic and personal support pathway has been developed
  • The pathway is financially resourced (NHS Beds and Luton, BBC, LBC, CBC working together)
  • Local multidisciplinary Autism Service become operational in July 2013

 

d.    Autism Bedfordshire – Support Services

  • Financial Support for Autism Beds increased 300% compared to “pre strategy funding”.
  • All social work teams from Bedford Borough have access to specialist knowledge of Autism Bedfordshire.
  • Carers in Bedfordshire in partnership with Autism Bedfordshire provide carer’s training sessions.

 

e.    Bedford Prison

 

  • Through the in house surveys Bedford Prison identified that there is a higher percentage of prisoners housed at Bedford that fall into the Autistic Spectrum, than nationally predicted. 

 

  • In response Bedford Prison put into place to identify the people who require further investigation. The prison also devised systems where by those identified are provided with a support mechanism by which they can be helped.

 

  • This was work has been recognised in the national strategy Think Autism 2014.

 

f.     Criminal Justice System

 

In 2013 Central Bedfordshire Council Autism Lead hosted two workshops with Bedfordshire Criminal Justice System Agencies to raise a profile of autism strategy and map local areas which could be improved in order to support people with autism better. This understanding will support further work.

 

In summary – The work so far.

 

Implementing ‘Fulfilling & Rewarding Lives in the East of England’ -  A report to the East of England Health & Wellbeing Leadership Group by regional National Autistic Society (July 2012) states:

“What is perhaps most heartening about what the Bedfordshire authorities have done is that they have set aside differences in approach and tackled all barriers which have arisen, they have formed a strong partnership between themselves and VCS partners and people with autism and had a focussed and driven approach to improving the services because they accept the moral basis for doing so and they genuinely want to improve the lives of people with autism in Bedfordshire.

I have grouped the three Bedfordshire local authorities together as they have been working in partnership with NHS Bedfordshire and South Essex Provider Trust (SEPT) to take forward a joined up response to the strategy.  It is my opinion that this work consists of some of the best work on the strategy in the region.  

In a relatively short time, the authorities have come together, worked with local partners, including an existing local charity partner, Autism Bedfordshire, had the input of adults with autism and parents to their steering group, held a number of public workshops, drafted a strategy, established a fuller Partnership Board which is held quarterly and is open to all members of the community to attend and raise issues, …drafted a service specification, with input from adults with autism, for an Autism Team, which will include local diagnosis, and are now working with providers to set it up, something they hope to do by October 2012”. 

 

What should we be doing next?

Although as mentioned above there has been substantial progress on meeting the needs of people with autism, there are still gaps which require improvement.

 

Push for Action/Think Autism – in line with 2013 National Autistic Society campaign and subsequent Think Autism Strategy 2014, local authority and the NHS, in cooperation with all stakeholders, should continue with building on original autism strategy recommendations.

 

In 2011 Bedford Borough Council in partnership with Bedfordshire Clinical Commissioning Group, and Central Bedfordshire Council developed a local autism strategy which was taking forward a number of actions to plan and develop appropriate services for adults with autism.

 

Fulfilling and Rewarding Lives Strategy In Bedfordshire identified specific areas for action between 2011-2014:

 

 

Local Autism Strategy 2011-2014 should be reviewed, with a view to build on the excellent work so far, and continue with the following priorities:

 

a.            Continue with Increasing awareness and understanding of autism among frontline professionals

 

Failing to understand autism, and its implications for adults with autism, mean that many do not trust public services, and will therefore fail to access them.  This may increase a sense of isolation and lead to physical and mental problems that will only be treated once those problems have reached crisis point. 

Recommendations

 

 

a.            Developing a clear, consistent pathway for diagnosis in every area, which is followed by the offer of a professional needs assessment

 

Better Services for People with an Autistic Spectrum Disorder reported that many people with autism and their families found that a diagnosis of autism was helpful in understanding the support needed by an individual.    Fulfilling and Rewarding Lives suggests:

 

Diagnosis is particularly important for adults who have not previously had their condition recognised … it is equally important for their families and carers … it can be an important step in ensuring that support takes account of how autism can affect the whole family.

 

Recommendations

 

 

b.            Improving access for adults with autism to the services and support they need to live independently within the community

 

Since 2006, under the Disability Equality Duty, all public sector organisations have been required to make reasonable adjustments to their services to cater for the needs of disabled people, and this should include needs of adults with autism, particularly for those with physical and sensory impairments.

 

Recommendations

 

The Standard Contract for Mental Health and Learning Disabilities should make specific references to adults with autism, and demonstrate how reasonable adjustments for adults with autism are made.  For frontline staff dealing with patients with autism this could mean:

 

·         Provision of lower-light areas or quiet areas for adults with autism with sensory impairments in healthcare settings

·         Provision of appointments for adults with autism at less busy times, and providing them with additional appointment time in order to assist with communication problems

·         Awareness by frontline staff of how to respond to those communication problems demonstrated by adults with autism

·         Providing an opportunity for adults with autism to visit an unfamiliar hospital setting, or be made aware of what they can expect from an unfamiliar situation

 

 

c.    Improve transition experience for young people with autism at 16+ in line with the recent legislation

 

Recommendations

 

  • In consultation with parents in Bedford Borough, the need for planned transition in an acceptable time frame is essential. Many families encounter situations where they are unable to support their child through transition because of a lack of information or decisions, resulting in changes having to be made quickly and in a manner that failed the person with autism.

 

d.    Concentrate on priorities as identified by the local ongoing consultation in order to create more autism friendly community in Bedford

 

 

Recommendations

 

·         Social Care Assessments

More work is required to ensure that diagnostic and support services are firmly linked to social work assessments.

 

·         Employment, Education and Training

Bedford Borough Council has supported employment services with various projects to support people who are eligible for social care support and want to get to employment. Local Job Centre Plus disability advisors received Autism Awareness training.  More work is required on strategic level around supported employment for all vulnerable groups (autism included). Autism Partnership will need to make recommendations on how this work can progress.

 

·         Work with Criminal Justice System

Bedford Prison provided examples of fantastic awareness raising for its staff and among inmates in 2012. The Autism Strategy must continue to engage with other partners from criminal and justice system such as Probation Services, Bedfordshire Police, and the Courts.

 

·         Accommodation and housing support

People with autism (including Asperger syndrome) vary greatly in their housing needs. Some live independently while others may require support with certain tasks or, in some cases, 24-hour specialist support. A better understanding of the range of existing need and provision is needed.

An improvement in the choice available as the information and help for people and their families seeking to plan for the future is required.

 

·         Sustainability

It is important that local Autism Partnerships continues cooperation with the local authorities and the NHS to ensure that autism agenda locally continues with the same passion as it did in the period of 2011-2014. Appropriate commissioning and staff resource is critical in order to continue delivering identified priorities.

 

2015 Update

 

The above recommendations were proposed in the strategic delivery plan for 2015 -2020

 

·         Employment

The Think Autism Partnership Board adopted the action plan to deliver the first priority. A copy of the action plan is available here:

http://www.bedford.gov.uk/health_and_social_care/help_for_adults/autism/think_autism_partnership.aspx

 

·         Social Care Assessments

This priority is planned to be discussed at the 17/11/2015 Think Autism Partnership Board. Result of the meeting will be the action plan to support social care assessments, and will be available as per the above link.

 

Remaining priorities will be discussed and action planed in turn during the quarterly Autism Partnership Meetings.

References

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NHS  Health Scotland, (2004) Health Needs Assessment Report - People With Learning Disabilities In Scotland NHS Health Scotland Available at: http://www.gla.ac.uk/media/media_63872_en.pdf

Projecting Adult Needs and Service Information (PANSI) (2011),  Available at:   http://www.pansi.org.uk/index.php?pageNo=383&areaID=8640&loc=8640

The National Autistic Society (2011), How Many People have Autism? http://www.autism.org.uk/About-autism/Some-facts-and-statistics/Statistics-how-many-people-have-autism-spectrum-disorders.aspx

Office for National Statistics, (2009) Survey feedback for Bedford Borough

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