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HERTFORDSHIRE ALL AGE AUTISM STRATEGY 2014 – 2017

SCRUTINY REPORT 2018 (Full version)

To report on what has been achieved on all 7 strategic objectives since April 2015 and to consider how the board will operate from April 2018

Report of the Hertfordshire All Age Autism Partnership Board (HAAAPB)

July 2018

Contents

1.0 Purpose of Report PAGE 3

2.0 Summary PAGE 3

3.0 Recommendations PAGE 4

4.0 Evidence PAGE 5

5.0 Governance PAGE 36

Appendix 1 Scrutiny Minutes

Appendix 2 Glossary

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REPORT OF THE ALL AGE AUTISM STRATEGY 2014-17

1.0 Purpose of Report

The HAAAPB business executive reviewed what has been achieved and what has not been achieved on the 7 strategic objectives of the All Age Autism Strategy 2014-17.

A scrutiny day was held on Friday 23 February 2018 to examine progress on strategic objectives 2 and 4.

Before the scrutiny day accountable officers across all 7 strategic objectives addressed the following questions and were asked to submit written position statements on:

What progress has been made on this objective? What are the challenges in taking this work forward, and how could this be

overcome? What is the relevant intelligence, taking note of the suggested questions

identified at full board on 14 November 2017? What difference is this objective making to outcomes for service users,

their parents and carers?

2.0 Summary

SuccessesThere has been notable progress made mostly in education (objective 4), and in parts of the diagnostic pathway (objective 2). These two areas were prioritised within the first 100 days of establishing the HAAAPB. The HAAAPB itself has made particular efforts to improve awareness and understanding of autism (objective 1) and also to promote and increase reasonable adjustments within employment (objective 4) including in the past two years, recruiting senior business support officers to the HAAAPB a role specifically open to autistic adults.

Improvements of data and outcomes measurement Areas in development – education, diagnosis and employment - can be greatly improved by developing robust datasets, data systems and data sharing protocols in order to begin benchmarking. In addition, there was no evidence received in relation to any of the 7 strategic objectives on the outcomes for service users, their parents and carers. Following the scrutiny day there is a recommendation for the HAAAPB to agree these outcome measures. The lack of consistency in monitoring and governance particularly in relation to the diagnostic pathway prove to be a significant barrier to achieving multi-agency excellence.

Gaps of progressWhere relevant agencies have not been represented on the HAAAPB there is a lack of recorded thus evidenced progress in these areas. There is little or no evidence of

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progress relating to reasonable adjustments within social inclusion, housing support and keeping safe (objective 5). In particular there is no evidence of progress made towards meaningful daytime activities, building and maintaining self-esteem, zero tolerance of bullying and discrimination, improving social and life skills, safeguarding and working with emergency services and the criminal justice system.

ScrutinyEvidence for scrutiny was received on 36 sub-objectives, which is 72% of the 50 sub-objectives within the All Age Autism Strategy 2014-17. The HAAAPB remains in a position to scrutinise and steer how these outputs are meeting and can better meet the desired outcomes for autistic people, their families and carers.

3.0 Recommendations for Strategic Objectives 2 and 4

1. Work towards reducing the confusion around transition age and a single age of transition

1.1 Clarity of transition age for services1.2 Ensure people have the right information about what transition means

to a young person and their family i.e. what will be offered post 16, 18, 19 etc.

2. Improve information and the knowledge health professionals have of autism

2.1 ‘My Health Purple Folder’ – for people on the autistic spectrum to be introduced to GP surgeries

2.2 0-25 Service to introduce the ‘My Health Purple Folder’ to children and young people from the age of 14 where appropriate

2.3 Recording of autism by GP surgeries to be promoted as standard practice

2.4 Raise awareness to GPs on how to recognise when extra support is required

3. Agree target outcomes for autistic people in Herts and implement progress monitoring against targets

3.1 Information regarding autistic adults and children numbers to be collected

3.2 What can police/criminal justice system provide in a way of data on the number of autistic people who have been put into cells in the last 3 months?

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4. Continue to progress the diagnostic pathway and post-diagnosis support for children and adults

4.1 Early Help and Intervention Help staff to be in post by June 20184.2 Local Implementation Group for children to be set up to drive forward

change with regular progress reports to the Steering Group 4.3 Demand Statement to be agreed4.4 Awareness raising to GPs on how to make appropriate referral for

children, young people and adults

5. Information on numbers of children and young people currently being home educated to be sourced

5.1 Identify number and why autistic children and young people are being home educated

5.1 Receive progress report by September 2018 on the outcome for the investigation into elective home education for autistic children

6. Assess impact of reduced funding for Work Solutions services

6.1 Map what other employment and voluntary provision is available countywide. And which other agencies might offer this kind of support outside of Work Solutions

4.0 Evidence

The HAAAPB oversees the progress of the 7 strategic objectives of the All Age Autism Strategy 2014-17. Though there is not a statutory requirement to undertake a scrutiny, the formal approach of a members’ scrutiny was adopted for this scrutiny process. The scrutiny was led by members of the HAAAPB business executive.

STRATEGIC OBJECTIVE 1

INCREASING AWARENESS AND UNDERSTANDING OF AUTISM

Sub-objective 1.1

Improve access to information for people with autism and their families and friends.

Local Offer online website has web pages on: The condition Communication & autism team

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The Hertfordshire.gov.uk website has web pages on:

Information on support groups Autism friendly libraries Assessment and support Information about condition Hertfordshire Directory

There are a few pages around autism on the Local Offer site for children and young people, one on the condition itself, another on the Communication and Autism team within ISL and there is a section about the autism work stream as part of the Special Educational Needs and Disabilities (SEND) Strategy.

The breadth of existing support organisations raises a concern that there are many organisations both in the public and third sector offering similar services with limited resources, which can be confusing especially for those newly diagnosed. There should be scope to bring together these organisations to pool resources and share good practice.

There appears to be little information and services relating to early years. When reviewing autism childcare none are specialised in dealing with autistic children. Also information on Children Centres is missing from the Local Offer website.

Detailed information online speaks of objectives but does not showcase lived experiences or case studies of being autistic.

Because autism is a broad spectrum, online information should include sub-categories of autism such as Asperger’s.

The college section online covers only Learning Difficulties, and does not mention university.

The HAAAPB undertook online research to examine the quality of useful information available to the public in relation to all 7 strategic objectives, and found that online information was particularly lacking around diagnosis, education, training and work. These findings formed part of the rationale to critically review objectives 2 and 4 at scrutiny.

Sub-objective 1.2

Raise awareness of autism in the general population, schools, local communities and employers.

General PopulationThe HAAAPB entered into 3 year partnership with the National Autistic Society (NAS) raising awareness campaign, this included the Too Much Information virtual reality roadshow held at the Galleria Centre, Hatfield over a weekend in July 2016,

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hosted by NAS staff supported by HAAAPB board members on both days. Campaign films (available on the NAS YouTube channel) included sensory overload virtual reality experience highlighting difficulties when attending an interview, processing time, and a quiz show film.

NAS also ran the roadshow at the Harlequin Centre in Watford. The virtual reality was aimed at giving the general public an understanding of how a trip to a shopping mall can impact on someone with heightened sensory. The roadshow was also present at the HAAAPB public event held in November 2016.

HAAAPB promoted the autism hour in October 2017 aimed at encouraging all retails outlets to make their shops more autism-friendly for an hour.

The Hertfordshire NAS branch has recruited a new committee in January 2018 and have launched a local support group/coffee morning in St Albans. It is hoped other activities will follow once the committee is more established.

Employer EngagementWhilst there has not been any specific employment engagement events in Hertfordshire, Work Solutions have worked with a number of Hertfordshire companies raising awareness of the benefits of employing autistic people.

An employer’s event is being planned for May 2018 to promote to Hertfordshire employers the benefits of employing people with disabilities including autism. This will focus mainly on recruiting 16 – 25 year olds but will include some provision for older adults as well.

Work to raise awareness to staff in educational settings has also been undertaken, see sub-objective 4.1.

Sub-objective 1.3

Increase levels of awareness and understanding amongst frontline staff in public services.

Children’s Services

E-learning Modules and Face-to-Face TrainingIn addition to the e-learning modules that are available for all HCC staff, we have also provided face-to-face training, which we are planning to deliver again in the next financial year. Please note Introduction to Autism is the same as the Adult Care Services (ACS) offer. We also ran sessions early in 2017 specifically for 0-25 and residential teams on understanding Autism Spectrum Condition (ASC).

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We are in the process of offering training to other agencies via the Families First Programme in relation to actions from the SEND PIAP, which is most likely to include autism training and potentially accessing the autism e-learning.

Adults

Autism Workforce Development GuideThis guide has been co-produced with experts by experience and can be used by employers and staff to identify their own learning needs in respect of employing or working alongside people with ASC. The guide also suggests a range of learning at basic, intermediate and specialist levels. The guide is aimed at teams and organisations both within Hertfordshire County Council (HCC) and in the wider community across Hertfordshire. It will be launched in early 2018.

Autism E-learning Module A HCC Introduction to Autism e-learning module has been co-produced with experts by experience. The learning objectives are:

Understand autism better and how it can affect individuals differently Use some practical tips to engage more confidently with service users who

may be on the autistic spectrum.

Courses for All HCC frontline, public-facing staff Introduction to Autistic Spectrum Conditions Autism – Some Different Perspectives Adult Care Services -Asperger’s Syndrome


DEVELOPING CLEAR AND CONSISTENT PATHWAYS FOR DIAGNOSIS AND FOR ASSESSMENT OF NEEDS INCLUDING OFFERS OF SUPPORT

Sub-objective 2.1Ensure timely access to diagnosis, holistic needs assessment and support by:

a) Identifying resources and commissioning capacity and capability for multidisciplinary diagnosis and assessment in line with NICE guidance; b) Facilitating early support and intervention and referral to local community support groups; ensuring equitable access across the county; and c) Improved consistency, monitoring and governance. The medical diagnosis needs assessment and support offered must cover all co-occurring and sensory issues.

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Governance - Children and Young People

In developing an Autism Diagnostic Pathway we took into account the feedback from a survey carried out by the Hertfordshire Parent Carer Involvement (HPCI), which highlighted a number of concerns with current service provision including:

delays and difficulties in getting a diagnosis and assessment inaccessibility of appropriate services; difficulty getting information; getting

services to work together getting a good education for academically able children parents’ feedback that they had to ‘battle’ to get services and the lack of

service integration were key issues

A Clinical Reference Group (CRG) was set up with representation from all existing providers and specialities across the autism pathway including Paediatricians, Child and Adolescent Psychiatrists, Psychologists, Adult Psychiatrists, Speech and Language Therapists, GP, Commissioners from Health, Early Help, and Special Educational Needs and Disability. The Clinical Reference Group discussed Autism diagnosis. It is envisaged that these pathways will inform the development of a wider neurodevelopmental pathway.

Recent data state the longest waiting times for a diagnostic assessment is 18 months. NICE guidelines state that the Autism Diagnostic Assessment should begin within 3 months of referral.

In 2011 there were an estimated 3,435 children and young people with autism living in Hertfordshire. From the Spring School Census data in 2011, there was an average prevalence of 0.7% children with a diagnosis on the autism spectrum but significant variation across different districts (see Figure 1 below).

Figure 1

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Whilst this can suggest that given the prevalence rate of 1% (Baird et al., 2006), there is a 0.3% shortfall, not every child with autism will have educational needs that require support that cannot be provided by the ordinary resources available to a mainstream school. However, it may be the case that some autistic children who are in need of support and a correct diagnosis may be missed in some areas of Hertfordshire.

Co-occurring conditions can only be diagnosed in a multi-disciplinary service. If the diagnostic service sits within an existing paediatric or mental health service, physical health co-occurrences will be diagnosed by the wider paediatric team while mental health co-occurrences will be diagnosed by the mental health service.

There are currently 1,027 children and young people waiting for an autism diagnosis in Hertfordshire and most of them have been waiting for between 9 and 18 months (this data is un-validated).

Challenges There are different organisations currently providing autism diagnosis and

support in Hertfordshire with different specialities, pathways, and ways of working.

Referrals for an Autism Diagnosis are not robust and do not include the right information

There is currently high demand for autism diagnosis and services are experiencing increased pressures for Autism Diagnosis and support.

There is a lack of collaboration between Autism and partner services involved in diagnosing and supporting CYP for co-occurring conditions.

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Transformational changes required in the way Autism services are delivered and commissioned, e.g. multi-disciplinary teams, block contracts, multiple service providers etc.

We do not know the number of private CYP diagnoses in the county

According to NICE guidelines health systems are required to provide diagnosis, professionals differ on its benefits and value.

The pathway for children and young people between the ages of 0-19 as defined by NICE and local knowledge of best practice:

Identifying symptoms of Autism can be done in a number of settings, home, school, health and social care.

Health care professionals make a referral for an Autism Diagnosis using NICE and/or any other national guidance e.g. GP, Practice Nurse, School Nurse.

The referral for an autism diagnostic assessment must follow robust criteria with information from parents/carers, along with professionals from healthcare and education.

A multi-disciplinary team of health care professionals triage, assess and diagnose Autism with a number of assessment tools including ADOS and DISCO. This team may include Paediatricians, Psychiatrists/Clinical Psychologists, Speech and Language Therapists, Specialist Health Visitors, Occupational Therapists.

Communication and engagement with parents and partners in health and social care organisations.

The Multi Disciplinary Team (MDT) team will produce a strengths and weaknesses profile and discuss it with parent/carers.

The MDT will ensure onward referral to partner health and social care and educational services as required. This could include diagnosis and support for co-morbid conditions, parent/carer group education to address the core features of autism.

The MDT will have a clear transition protocol for young people turning 19 years old and liaise with adult services.

The current pathways are different across Hertfordshire with two paediatric providers delivering autism diagnosis, with PALMS providing post diagnostic support and interventions, and Hertfordshire County Council providing parent/carer group education sessions.

Next short-term steps

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There is variation in waiting times for diagnosis for West and East/North Herts. Up to 1,060 young people are waiting and a way needs to be found on how to prioritise.

We need more data, and to ask this of providers by looking at each age band and school years. Risk assessments need to be undertaken.

We have been in touch with NHS outside Herts to consider running additional diagnostic clinics over weekends.

Redesigning coproduction with families and partners is a good opportunity to see and help families.

Longer term Recognise new and emergent behaviours, which include demand avoidance

type presentation and co-occurrences. We have to be mindful of our responsibility to these young people.

Redesigning occupational therapy – adaptations including sensory needs and daily living.

Redesign speech therapy.

Governance – Adults

The Local Implementation Group (LIG) was set up to involve both service users and carers in the review and design of the pathway. The LIG has a Mental health GP lead as a member, the work is discussed in the programme board and Joint Commissioning Partnership Board in the CCG’s and the agreed clinical pathway will be taken to the boards for ratification.

The continued development of a neurodevelopmental pathway will be monitored through the LIG for adults.

Waiting TimeThe current wait from referral to specialist diagnosis ranges from between 9 to 22 months, depending on the quadrant (see Figure 2 below). Diagnosis is being made in other specialist services within HPFT, for example Community Perinatal Mental Health Services and further work is going to be undertaken to see what other specialist services make diagnoses.

The multi-disciplinary team will have access to physical health care services.

Figure 2 – ASC referrals per annum and wait times (August 2016 – July 2017)

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CCG Quadrant

Annual referralsAug 16 – July 17

No. currently waiting for assessment

Current waiting time(approx)

East & North

E&SE 42 25 9 months

North 26 11 7 months

Herts Valleys

SW 20 2726 months

NW 19 3722 months

Total 107 100

Commissioners Actions A review of other provider diagnostic pathways A review of assessment processes and training costs

– A visit to the Tavistock and Portman to request information on activity that is currently under-utilised.

– A desk top review of assessment tools and training costs. A draft diagnostic pathway was agreed between provider and commissioner

Moving forward The draft diagnostic pathway was presented and agreed at the LIG. The new pathway will commence once the project plan has been

implemented to reduce the current waitlist The current commissioning for diagnostic appointments will be reviewed in

line with the findings of the Joint strategic needs assessment (JSNA) undertaken by Public Health.

HPFT are currently working through the internal changes that are needed to be able to deliver the new pathway.

Figure 3 - Estimated number of autistic adults

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Challenges There are data issues with activity and outcome measures, which include a lack

of GP recording of information for those who have a diagnosis. There are issues with services not working together on the pathways The lack of understanding across all health care services of Autism Spectrum

Condition and how to provide reasonable adjustments.

There will be a better understanding of what is available to service users and carers through a health care service. There will be less waiting time and more clarity on what type of assessments are available and what services may be available post diagnostic assessment.

What we don’t know Number of adults that might come forward Number of adults in Hertfordshire with a diagnosis, some go privately and this

information is not captured.

How do we do this better? Prepare GP and primary care trusts to make better referrals – with paper

sessions and training over the year. SPA – single point of access – self referral. Give them the information they

need to triage work. Ask clients about their experiences of autism. Break up utility pathway - triage information with the multi disciplinary team

Then a decision will be made about whether the client will have a diagnosis or not.

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The diagnosis queue is looked at by need and risk.

Diagnosis utilises: ‘Itch’ of something not right Lives very impacted A matrix will be used to define diagnostic utility

Working with HCT with Integrated Needs Assessment - will have assessment depending on the outcome of the triage. We need to ensure health and social care links are stronger – this piece of work is ongoing.

Next steps Having public health on board and getting information from them. Would like HAAAPB to support getting information recorded. Joint Strategic Needs Assessment (JSNA) will highlight if there is a lack of

information. Diagnostic pathway – a mental health need and/or autism diagnosis – mental

health services should make reasonable adjustments for autism. Looking at training Mental Health colleagues.

0-25 Together service and the adult disability team will have a dedicated social work allocation per quadrant depending on population prevalence. The next part of establishing the diagnostic pathway is to ensure that these social workers are linked to the psychologists in HPFT for multi-disciplinary team assessments.

The assessment tools will be reviewed and service users are requested to participate in this review.

Sub-objective 2.2With consent share information on diagnosis, needs assessment and service and support identified with the school and others as appropriate. Encourage the use of hand held ‘Autism Alert Cards’, and ‘Passports for autism support’ and ensure all medical notes clearly flag autism.

See sub-objective 3.4.

Sub-objective 2.3Consider splitting the diagnostic and needs assessment process to enable timely access, with the diagnostic process feeding into the needs assessment. Ensure that assessments are holistic, looking at all areas of a child’s or adult’s life and experience, including their strengths, and fully engage parents and carers as equal partners in the whole process and in decisions about services and support offered. Clarify the lead agency for each individual and key worker whether a professional or a parent or carer.

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Sub-objective 2.4Clarify and map out pathways and access routes for children, young people and adults and publicise widely.


Sub-objective 2.5Consider use of routine screening tools such as MCHAT for toddlers to encourage earlier diagnosis and interventions and to raise awareness amongst professionals.

Information on this sub-objective was not specifically requested.

Sub-objective 2.6Consider developing a multi-agency centre of excellence locally possibly in collaboration with an existing centre.



IMPROVING ACCESS TO COMMUNITY, MAINSTREAM AND SPECIALIST SERVICES AND SUPPORT FOR HEALTH AND SOCIAL CARE

Sub-objective 3.1Ensure all frontline staff have adequate autism training to understand autism and know how to make reasonable adjustments to their services and ensure good support for people of all ages across the spectrum and to know when and how to refer for a diagnostic assessment.


Sub-objective 3.2Provide access to services based on holistic assessment of needs, done with parents and carers as equal partners and ensure that there is an easy to use searchable directory of services available to professionals, families, carers and people with autism.

Information and Advice Service

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Following the introduction of the Care Act, Adult Care Services has been working to develop a more accessible information and advice service for all residents that tells people about our services and how to access them.

Feedback from service usersWe have acted on specific feedback from service users with learning disabilities and/or autism and carers, and developed the following resources:

Video versions of some of our leaflets Easy read versions of all of our printed and online material An events database for people with care and support needs –

www.hertfordshire.gov.uk/adultevents We have made several improvements to the community directory – including

a redesign and data cleanse to ensure the credibility of search results We have Social Care links in our library service that are trained to signpost

and support residents to access the information they need. This has included specific autism awareness training. This year we are also holding an employment and volunteering roadshow in libraries to support young adults with care and support needs.

We have launched a countywide disability access guide with DisabledGo

Connected LivesIn February 2018 we are launching a new assessment framework – Connected Lives; that places a greater emphasis on prevention, enablement and community assets. The process is underpinned by enablement and independence. It considers, what does the person, their family, their friends and neighbours and local community have that can help? We understand and respect that people are the experts in their own lives. Connected Lives encourages staff to allow people to express their own wishes and preferences.

Sub-objective 3.3Ensure staff have clear and manageable roles and responsibilities to enable them to work effectively in a person centre, outcomes focused environment, with adequate training, support and supervision and sharing information effectively with multi-skilling as required.

Streamlining professional roles of those involved in the care and education of those with SEND requires system-wide analysis and review to ensure that available resources are utilised to best effect. The 0-25 Together Service has refined the social work offer to those with eligible support needs by bringing social workers for children together with social workers for adults in the same team. We are developing a model of care and support that intends to simplify the model of service delivery and achieve a more consistent and seamless offer.

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Sub-objective 3.4With consent, share information on diagnosis, needs assessment and services and support identified with the school and others as appropriate. Ensure the use of hand held ‘Autism Alert Cards’, and ‘Passports for Autism Support’ and ensure all medical notes clearly flag autism.

Information about Autism Alert Cards and Passport for Autism support is available on the Hertfordshire County Council website.

We are unable to clarify if medical notes have autism flagged as this is something that is not mandatory.

Sub-objective 3.5Seek to develop better information systems to have a better understanding of how many people known to health, social care and learning disability services have autism.

ADULT DATA

In 2017 there were an estimated 8,948 residents over the age of 18 in Hertfordshire who were autistic. This is projected to rise to over 9,193 residents on the autism spectrum by 2020 with an estimated growth by 15.2% by 2035. As at May 2018 there were 535 clients receiving one or more services from Adult Social Care and recorded as having ‘Asperger’s’ or ‘Autism’ in their case ACSIS case files.

GENDER

Over three quarters of autistic adults receiving adult social care are male

Of those 535 clients, 405 (76%) were male and 130 (24%) were female.

AGE

18-30 year olds make up just over two thirds of the total of autistic clients.

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https://www.hertfordshire.gov.uk/services/adult-social-services/mental-health-and-dementia/support-for-adults-with-autism.aspx

ETHNICITY

Autistic clients are predominantly White British or White Irish.

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SERVICE TEAM

The team with the most autistic clients is the 0-25 Together Learning Disability Team.

DISTRICT

Stevenage and Three Rivers have the highest rate of autistic clients.

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CATEGORY (as at 31 March 2017)

Nearly half of autistic clients managed their own personal budget for adult care services.

SUMMARY OF ADULT DATA

Local data is limited by what HCC have on ACSIS. Of those known to us via ACSIS, autistic adults using adult social care services in Hertfordshire are likely to be male, aged 30 or under, White British or White Irish, receive services from the 0-25 Together Learning Disability Team, and live in Stevenage or Three Rivers. Nearly half of autistic clients managed their own personal budget for adult care services.

The rate of autistic adults living in Hertfordshire is predicted to grow faster than the rate of the overall population in Hertfordshire.

Children’s data

Recording as a disability in the demographic sectionWithin the main demographics section of LCS, it is possible to record autism as a disability. Any conditions recorded can be categorised as either 1 - Mild, 2 - Moderate, 3 - Severe or 4 - Profound. Notes can also be recorded along with an indication of whether or not the child/young person is on the disability register, and if so, whether parental consent has been gained to record within the register.

General health recordingAutism can be recorded within the Health tab on LCS as a “health condition”. There is a free text box which allows the user to record the impact of this condition on the person and it is possible to record details of health assessments and development checks.

Child and Family Assessment FormWithin the Child and Family Assessment form, there is a section on the Child/Young Person’s developmental needs and this includes a question on health.

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Initial Health AssessmentThis form is an external manually completed British Association for Adoption and Fostering (BAAF) form, which includes information from the BAAF parental history form – this form includes a question asking whether or not there have been any issues relating to Autism.

Review Health AssessmentThis form is available as a standalone form within LCS.

Strengths and Difficulties QuestionnaireThe Strengths and Difficulties Questionnaire is actually three separate forms – one of which contains feedback from carers, one from designated teachers and one from children/young people aged 11-17 year old. The answers that are captured are grouped into various domains - Emotional Symptoms, Conduct Problems, Hyperactivity Problems, Peer relationship Problems and Pro-social behaviour. As with the Review Health Assessment above, there is nothing specific within the form that focuses on autism but there are questions which will highlight if a child/young person is struggling in areas which may indicate that further investigation/ assessment is required to determine if that child is autistic.

Referral FormWithin the referral form, the “Reason for Referral” section has a category of need for referral pick list. If “Disabled Children” is selected as the primary reason, available as one of the sub-set of this reason is “Autism”. Underneath the checkboxes, there is a mandatory textbox “Reason for Referral” where the user can record more detailed information about why they are making the referral.

Short Breaks review workflowA new workflow has recently been introduced into LCS which enables workers to record information relating to short breaks (for those children with disabilities that are receiving a service but who are not subject to the Children in Need (CIN) process.

There are no specific questions within any of the forms in the workflow relating to autism but it is possible for the completing worker to capture relevant information which may include details of whether or not the child/young person is autistic.

Brokerage Workspace – 0-25 SEND Homecare FormWithin the Brokerage Workspace, the 0-25 SEND Homecare Form captures information on whether or not the child/young person has any disabilities – including autism.

Disabled Children’s Team (DCT) Service Request FormThe DCT Service Request Form is a standalone form. This allows information on disabilities to be captured (including autism) and then contains a number of different questions and sections which allow completing workers to capture information which will help ensure that services meet the child/young person’s needs.

Carer’s Assessment Form

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The Carer’s Assessment Form is a standalone form which is available from the main Forms section within the child/young person’s demographics record on LCS. The main challenges with regards to recording information on LCS pertain to those areas where it is identified that modifications need to be made to the core LCS architecture (as opposed to those forms/parts of the system which can be amended locally by Serco).

Any changes that cannot be made by Serco need to be addressed by Liquidlogic – we can raise these as change requests but in terms of timescales, this will be dependent on Liquidlogic’s roadmap for future LCS developments. There would also likely be charges involved in any change requests unless these can be demonstrated to be of benefit to all LCS customers across the country. Were this to be the case, Hertfordshire could explore whether any other LAs wished to share development costs.

Further work is being undertaken to look at how the transfer of cases between LCS and LAS (ACS “ACSIS” recording system) takes place – at present, this is still at an early stage and there are no definite timescales as to when any further developments will be implemented across both systems.

Sub-objective 3.6Integrate and jointly commission services whenever feasible.


Sub-objective 3.7Consider developing a local multi-agency centre of excellence, possibly in collaboration with an existing centre.



HELPING PEOPLE WITH AUTISM IN EDUCATION, TRANSITION TO ADULTHOOD, TRAINING AND WORK. DEVELOPING SKILLS

AND INDEPENDENCE

Sub-objective 4.1.1Incorporate the Hertfordshire DSPL (Delivering Special Provision Locally) review and its recommendations into this strategy when it is finalised, and amend these Recommended Actions as appropriate.

Autism Work Stream

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The work of the autism work stream was informed by the Hertfordshire review of educational provision undertaken by Dr Glenys Jones in 2015.

The DSPL (SEND) Leads have been supported by the Autism Work Stream Lead as the Work Stream has concluded; they will be supported by a new post of Lead Practitioner (Autism) within the SEND Specialist Advice and Support Service.

The focus of this approach being on delivering:

1) A countywide and core framework and expectation, 2) A DSPL Area implementation (localised to area circumstances), 3) A school/setting application to reflect each individual and school/setting.

Autism Approach and Improvement Framework1. An autism dataset has been developed to assist with the autism improvement

work, the DSPL (SEND) Leads’ work, to assess service gaps, develop provision and inform the work of support services so that they can better address needs.

2. Further work to understand and address gaps in services and provision, particularly for those with complex needs, is being taken forward by the new Specialist Provision Work Stream.

3. The SEND Specialist Advice and Support Service (SEND - SASS) is undertaking work to ensure that educational support and outreach services and partner services provide a clearer and more integrated approach to supporting schools, pupils and parents. SEND SASS and Early Help are also exploring how to improve co-ordinated approaches to early intervention (where difficulties are arising) as well as responding to provide effective and timely interventions where the school placement is seriously at risk, including those on reduced timetables.

Sub-objective 4.1.2Ensure all children and young people with autism have access to good high quality education, with support to meet the needs of children and young people across the autistic spectrum.

Ensuring that all schools improve their approach and support pupils and their parents A Hertfordshire ‘Schools Autism Approach’ has been developed and disseminated to all schools. Whilst it is a recommended approach, it cannot be made mandatory and raises issues about motivating and encouraging all schools to adopt good practice and improve their provision for autism.

DSPL (SEND) Lead

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Hertfordshire has invested in the establishment of a DSPL (SEND) Lead for each of the nine DSPL Areas to support this. The (SEND) Leads have a work plan that includes developing a data base of all school ’Autism Leads’ for their DSPL area, holding regular workshops for the school leads to support them to apply the ‘Schools Autism Approach’, to work on the Autism Education Trust (AET) Standards, apply the Review recommendations and good autism practice approaches.

Local Offer – AutismAn ‘Autism Quality Offer’ has been developed in conjunction with Herts for Learning that links to the overarching SEND Quality Offer. This sets out clear expectations of schools and also the support that the DSPL (SEND) Leads will provide to help schools implement the ‘Autism Quality Offer’. A range of information and autism ‘tools’ have been developed that will be included in the Local Offer. Work is currently underway to finalise the information and format and incorporate health and social care information. In turn, this will be developed by the DSPL (SEND) Leads into any specific area information and by schools to incorporate into their own published SEND Information Report (‘School Offer’).

Further work needed to understand and address gaps in services and in provision, particularly for those with complex needs, is being taken forward by the new Specialist Provision Work Stream.

Sub-objective 4.1.3Ensure all staff in schools are aware of autism, understand how it may affect pupils with autism in different ways and know how to make reasonable adjustments and focus on strengths to enable every pupil to achieve their potential.

There is now a clear range of support, training and ‘autism friendly tools’ that can support schools, pupils and families across education. Over the next few weeks the SEND Strategy Work Stream Lead for Autism will be producing some short explanations of the AET (Autism Education Training) framework, the autism approach, work undertaken be the DSPL (SEND) Leads, how the attached ‘Autism Quality Offer’ works and how we are using AET to improve the approach to autism across all schools. The Integrated Services for Learning team are producing/updating information about how the services support schools etc. It would be helpful to ensure the ‘Autism Local Offer’ information works well.

Sub-objective 4.1.4Ensure no teacher is teaching a pupil with autism without any training or understanding of autism; schools should consider appointing an Autism Champion from amongst the teaching staff as part of as a whole school approach. The Champion would ensure there are ‘autism friendly environments’ available to pupils with autism and support to learn social skills; they would mentor staff and students and monitor their progress.

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Free Autism Education Trust (AET) Training for all schoolsOne aspect of ensuring a countywide and consistent approach is the offer of free AET training (Autism Education Trust) to all schools. There are 6 different courses, ranging from introductory/foundation level through to specialist and senior leadership level training. The objective is to train all school/setting staff at foundation level and at least 2 members of staff at all other levels.

Over 3,500 staff in Hertfordshire have been trained as at the end of January 2018. This approach will be broadened to incorporate all Early Years settings and Post 16 provisions from April 2018. This will enable a consistent core training framework which also has an emphasis on improving transition. To support the AET approach, all early years’ settings, schools and colleges are being encouraged and supported to complete the AET Standards as a self-evaluation and improvement tool and to use the range of AET materials, e.g. transition tool kit, working with parents’ guide, sensory audits etc.

Sub-objective 4.1.5Treat parents as equal partners and work closely with them across school, home and other services.

Stakeholder InvolvementThe Autism Work Stream membership included a range of stakeholders including two parents. Each DSPL Area is expected to set up an Autism Improvement Group including parents and the majority of DSPL Areas have held autism focussed events and conferences that have encouraged parent attendance and engagement as well as schools and other services. The majority of DSPL Areas have also set up support groups for parents with children with autism attending a school in the area and have produced parent newsletters.

Achieving with Autism DVDA number of work stream stakeholder events have been held and leaflets/newsletters produced. A DVD has been produced Achieving with Autism that provides examples of how ‘reasonable adjustments’ made by schools and settings in Hertfordshire have made a difference for children and young people with autism. This is shown alongside the AET training and has been well received.

Sub-objective 4.2.1Continue to implement Hertfordshire’s Preparing for Adulthood strategy and recommendations.

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Preparing for Adulthood StrategyThe Preparing for Adulthood Strategy has been updated and is being implemented by the Preparation for Adulthood Provider Network. There is a Transition Support Worker based in each of the four local colleges and they support the transition of vulnerable young people from their feeder Learning Disability (LD) and Social Emotional Mental Health (SEMH) schools into college.

There is a gap in mainstream education. DSPL 4 (Broxbourne) are working on this and have employed a Transition Support Worker from December 2017 to support vulnerable young people transitioning from Broxbourne Schools into college. Other DSPL areas have shown an interest, but nothing has been developed thus far.

SLD schools feel that something similar would be useful for their most complex students transitioning into college. This is being investigated currently through the Preparing for Adulthood work streams.

Young people who leave SEMH schools embark on a mainstream programme at college and often find the change difficult to cope with resulting in many leaving college early. A Preparing for Adulthood work stream and action research project is being developed to look at this, with an aim to develop a ‘bridging programme’ to support young people to remain in college. This work has only just started but there are some examples already available – Oaklands College has a new course and North Hertfordshire College has the Springboard course.

Sub-objective 4.2.2Ensure professionals in schools and colleges have high expectations of young people with autism, and encourage their potential for employment and further education and training, recognising and capitalising on the particular strengths of aspects of autism to find suitable employment and activities.

See sub-objective 4.1.2.

Problems arise as education no longer under the jurisdiction of Local Authorities (LA). In 2012, the Department for Education (DfE) removed the duty to deliver independent, impartial careers information; advice and guidance for young people from ages 9 to 12 years old from the local authority and instead have given it to schools to commission. In 2013, the DfE extended this to colleges and extended the year groups from year 8 to year 13. The majority of mainstream, and special schools in Hertfordshire commission/trade with Youth Connexions (YC) Hertfordshire, but they are not obliged to do so and can use other private providers. Some of the colleges trade with YC Hertfordshire.

Work experience is no longer a statutory requirement in schools, however YC Hertfordshire offers a work experience service to schools and other parties. This is

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available as block, extended and bespoke, depending upon needs. Many schools, both mainstream and special do purchase this service.

Sub-objective 4.2.3Ensure every young person aged 14 – 18 with a diagnosis of autism, and their parent/carers have access to appropriate information, advice and support. They should be offered a person-centred plan to identify the support they need, both formal and informal, to achieve independence, choice and control, in accordance with their needs, ranging from advice and signposting to intensive services, with a smooth hand-over of relevant information.

SEND Code of Practice (2015)The SEND Code of Practice (2015) states that all young people with an Education, Health and Care Plan (EHCP) from year 9 onwards should have a transition plan. In Hertfordshire, this is in the form of a Preparing for Adulthood (PfA) Transition Plan, which is produced with the young person by a YC Hertfordshire qualified Personal Adviser in Year 9 and then updated in Year 11 or 13/14 for young people in special schools that continue post-16. This plan gives the young person a voice and allows them to express their views about their future.

YC Hertfordshire Personal AdvisersYC Hertfordshire Personal Advisers will attend EHCP annual reviews in Years 9 and Year 11 for mainstream and special schools, where young people leave at 16 and in Year 13/14 for special schools where young people remain post-16.

Parents and young people can request a careers guidance interview through their school/college, although often do not.

Some special schools choose to purchase YC Hertfordshire time to undertake planning with their pupils in year 10 and year 13, so that they are able to make better choices in year 11 or year 14, depending on when the pupils leave school.

All young people should be offered a person-centred plan to identify the support they need, both formal and informal, to achieve independence, choice and control, in accordance with their needs, ranging from advice and signposting to intensive services, with a smooth hand-over of relevant information.

There is information available on www.youthconnexions-hertfordshire.org offering advice on thinking about the future and youth projects available.

There are two ASC youth projects:

Autism Spectrum Disorder Project, Bowes Lyon Centre, St George’s Way, Stevenage SG1 1XY, Wednesday 4pm – 6pm, for young autistic people aged 13–17 and

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http://www.youthconnexions-hertfordshire.org/

Autism Project Monks Walk Youth Project, Knights field, Welwyn AL8 7NA Monday 6pm - 8pm, for young people with high-functioning autism.

Handover information from schools to further education establishments is variable, some schools pass on good information across and others do not send anything. This is an area of work that requires improvement in some areas.

Sub-objective 4.2.4Ensure young people are listened to and supported to make decisions about their lives and to discuss these with their families.

All colleges have student councils but we are not aware of any that have forums or councils specifically for autistic young people.

Springboard provision Springboard has student representatives at both sites (Watford & Stevenage) and regular forums are held to take feedback from students regarding the curriculum, support needs and any improvements they would like to see. Students also represent Springboard at meetings NHC main site where they develop skills and confidence in public speaking

Employment AdvisersCurrently YC Hertfordshire has a small team of supported employment advisers who work with young people to help them find paid employment.

Supported InternshipsSupported internships are available at all the FE colleges in Hertfordshire. This is a study programme where young people undertake the majority of their course on work experience with local employers whilst receiving job coach and key skills support from the college.

Sub-objective 4.3.1Raise awareness amongst employers about the potential benefits of employing people with autism.


YC Hertfordshire, Work Solutions and Hertfordshire Co-Production Board have delivered various awareness raising events / information for employers.

Hertfordshire Co-production BoardThe Hertfordshire Co-production Board worked together on a toolkit to encourage businesses to employ people with disabilities in order to make any workplace more inclusive and accessible.

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Employer ToolkitThe employer toolkit was developed with service users and carers as a practical resource for employers. It is designed to be used by small to medium sized business/organisations in Hertfordshire and aims to encourage them to:

Employ disabled people by busting some myths and giving details of all the support and advice available.

Provide a more inclusive service to people with disabilities and health conditions who may need extra help, time and understanding.

Sub-objective 4.3.2

Through the Employment Board, ensure people with autism are supported into and during employment with wide-ranging approaches including the provision of job coaches/buddies/mentors or personal assistants paid for from personal budgets, and with the assumption of employability, building on person centre plans based on high aspirations.

Work Solutions and YC HertfordshireThe Employment Board has not been operational for many years. However, Work Solutions and YC Hertfordshire continue to offer services to autistic people to find paid employment. Using the Place and Train model of supported employment all placements are person-centred, concentrating on individuals’ strengths and aspirations of a realistic career path. Both services offer ongoing support once in employment if the individual requires it though not everybody wants to have this continued support.

Pathways to Employment BoardThe Pathways to Employment board will be uniting with the ADS Efficiency Board - Employment and Volunteering task and finish board throughout 2018 to improve employment opportunities for people with disabilities including autism.

Senior Business Support Officer to the HAAAPBSince 2016 the HAAAPB itself has employed a Senior Business Support Officer to the board to provide additional administration capacity and also to offer a unique paid role. This position has been open to autistic adults to gain employment supported and line managed by the HAAAPB board manager. This remains as 12 month fixed term vacancy allowing the opportunity to extend the job role to more autistic people year on year.

The HAAAPB itself has learnt from the lived experiences of autistic people and have applied best practice to the employment process of recruiting this Senior Business Support Officer post.

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Sub-objective 4.3.3Ensure a wide range of opportunities for further education, training, paid and voluntary work and meaningful daytime activities with good support readily available to enable a person to continue in work when a crisis arises and to prevent crises.



BEING AN EQUAL PART OF THE LOCAL COMMUNITY, SOCIAL INCLUSION, HOUSING SUPPORT AND KEEPING SAFE

Sub-objective 5.1.1Emphasise the crucial importance of building and maintaining self-esteem.


Sub-objective 5.1.2Work to increase understanding, awareness, acceptance and celebration of differences with a zero tolerance approach to discrimination and bullying.


Sub-objective 5.1.3Work with voluntary and community sector to further develop social groups for all ages, as well as befriending, buddying and mentoring schemes to support access to mainstream clubs and facilities and to improve social and life skills.


Sub-objective 5.2.1Ensure people with autism and their families have clear information, advice and support about housing options and maintaining tenancies, including financial information to support financial capability among people with autism on managing personal finances and household budgeting.

ACS day services provide a range of opportunities for participation in the local community:

HAFLS provide a range of learning opportunities in partnership with a broad range of delivery partners.

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ACS is re-scoping the Shared Lives services to provide a wider range of accommodation options particularly for younger people.

The Work Solutions team has been awarded DWP funding to develop its Proof of Concept approach working closely with Job Centre Plus and its partner delivery organisations.

ACS 10 year Supported Accommodation Strategy sets out key growth in community accommodation for all needs, with an ambition to separate care from housing and new models to make housing more accessible

The main challenges are for residents with behaviours that challenge – finding ways to promote independence while ensuring the wellbeing of the individual and their carers.

Ensuring sufficient services are available within the county to reduce out-of-county placements.

Ensuring sufficient respite provision is available.

Help in a crisis services particularly short-term accommodation options.

A current lack of suitable affordable accommodation options that meet the expectations of younger adults.

Sub-objective 5.2.2Support housing agencies and councils to raise awareness and understanding of autism amongst their staff, and to review their policies and practices to include autism, and encourage people living with their parents to register with the council for independent accommodation.


Sub-objective 5.2.3Continue to encourage the development of a range of new and innovative housing options offering care and support, and support people to access mainstream housing where they can have a tailored package of support from a provider of their choosing, using a personal or a managed budget.


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Sub-objective 5.2.4Offer people with autism the opportunity to live as independently as possible and to exercise choice and control in their lives and support people with autism (where appropriate) to move from residential care to independent/supported living.


Sub-objective 5.3.1Promote widely the Autism Alert Card to people with autism and the NAS Passport to Autism Support.

Information can be found on the HAAAPB website regarding a variety of autism alert cards, including Anglia Autism Alert Card and the National Autistic Society Autism Alert Card people can choose which they prefer and download the information.

Sub-objective 5.3.2Work with emergencies services and agencies within the criminal justice system to encourage the provision of training to staff.


Sub-objective 5.3.3Ensure policies and practise in schools and other settings safeguard vulnerable people with autism.


Sub-objective 5.3.4Work with Children’s and Adult’s Safeguarding Boards to protect and take account of the needs of children and adults with autism, and their particular vulnerabilities.


Sub-objective 5.3.5Seek to develop better information systems to have a better understanding of how many people in the criminal justice system have autism.


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INVOLVING AND SUPPORTING CARERS AND FAMILIES OF PEOPLE WITH AUTISM

Sub-objective 6.1Incorporate the recommendations from the Hertfordshire report on Parental Involvement in DSPL, led by Brian Lamb, OBE and further explore and implement those recommendations with parent carers involved at a strategic level in the light of the SEND reforms.


Sub-objective 6.2Treat parents of children and young people with autism as equal partner and work closely with them across all statutory service (including schools) and home.


Sub-objective 6.3Ensure that children, young people and adults with autism and their parents and carers are involved in discussions and decision about their individual support and about local provision, including the Local offers for schools and HCC and strategies and plans affecting those with autism, including implementation of this strategy.

See sub-objectives 4.1.5 and 7.2.

In 2017 the HAAAPB business executive was established to drive forward the business needs of the board. Self-advocate and community advocate membership on the business executive is above 50%.


IMPROVING THE WAY SERVICES FOR ADULTS AND CHILDREN WITH AUTISM ARE PLANNED, PRIORITISED, COMMISSIONED AND MONITORED

Sub-objective 7.1Jointly commission and integrate services for autism whenever and wherever possible.


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Sub-objective 7.2Children, young people and adults with autism and their parents and carers should be involved in coproducing new services and in redesigning existing services, including implementation of this strategy.


Co-production In Adult Care Services our strategic Co-Production Board has recently launched our co-production standards (www.hertfordshire.gov.uk/coproduction) that sets out the expectation on our staff to co-produce new services with people who have experience of using services. As well as guidance for staff on when to co-produce and best practice, the board has developed training and resources and will be monitoring the implementation of this. This has all been co-produced with the service user and carer members of the board.

We have representatives on the board from parent/carers with adult children with Autism and Asperger’s who have been very candid about sharing their experiences. This has resulted in the board prioritising a project that aims to develop more employment and volunteering opportunities for young adults with disabilities and learning disabilities and/or autism.

Employer ToolkitHertfordshire co-production board worked together on a toolkit to encourage businesses to employ people with disabilities in order to make any workplace more inclusive and accessible.

The employer toolkit was developed with service users and carers as a practical resource for employers. It is designed to be used by small to medium sized business/organisations in Hertfordshire and aims to encourage them to:

Employ disabled people by busting some myths and giving details of all the support and advice available.

Provide a more inclusive service to people with disabilities and health conditions who may need extra help, time and understanding.

Carers of Adults with Autism or Asperger’s (C4A) In terms of support for carers of adults with ASC - Carers in Hertfordshire run an evening group called C4A, which meets in Hatfield six times a year (every two months.

Forum for CarersWe also run a forum for carers of adults with learning disability including those who also have ASC and that also meets six times a year in Hatfield but during the day.

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http://www.hertfordshire.gov.uk/coproduction

Carer ServicesAll carers can access our one-to-one carer planning service, attend our Carer Hubs, access our Mentoring service, attending our Carers Development and Learning Services (a variety of free courses and workshops), take part in our Involvement activities and have a Carers Passport.

Sub-objective 7.3Early intervention and prevention services and training of staff must be given high priority to ensure provision of high quality services and to prevent problems escalating with poor outcomes and high long-term costs.


Sub-objective 7.4Ensure all children, young people and adults with autism are offered a person-centre planning process, with a holistic assessment of their needs and strengths, services, support and adjustments identified and clear outcomes which are regularly monitored.


Sub-objective 7.5Ensure these processes are available to all and appropriate for the level and complexity of need at the time, with some needing little more than a quick review of issues and sign-posting to a service or group, while others will require a holistic multiagency needs assessment and a range of long-term services and support.


Sub-objective 7.6Encourage the use of personal budgets to give people choice and control over their services and support.

As of 16 January 2018 there are currently 401 clients with a personal budget with the following health conditions:

Asperger’s Syndrome/ High functioning autism Autism (Asperger’s Syndrome/ High functioning autism)

From 1 April 2017 to the 31 January 2018, there were 209 children receiving direct payments. From 1 February 2018 and onwards, there are 191 children receiving direct payments.

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Sub-objective 7.7Organisations should review their information systems and the accuracy of data recording and collecting regarding autism for better planning of autism services.


5.0 Governance

At scrutiny on the 23 February 2018 the business executive reviewed its governance structure to improve its effectiveness going forward.

Members feel that the board’s main purpose is to provide focus on the lives of autistic people, share service user experiences, identify gaps and challenges, provide scrutiny, and provide opportunities for providers to collaborate and create solutions together.

Business executive members wish to increase the HAAAPB’s influence and so are considering new recruitment to the full board and to the business executive, and also exploring new ways of working.

In the future, the board will seek to have a more targeted approach ensuring that its efforts are not duplicated and that it adds value to other existing boards. The business executive is considering an Assess, Plan, Review, Do cycle or having task and finish groups to further formalise its focus.

The business executive feel it has an important role in setting priorities against the all age autism strategy, bringing specific focus on the gaps in delivery against the strategic objectives. It is considering creating a business plan to set out these priorities and then holding board meetings by themes, which officers will be invited in advance to attend.

The business executive also wish to improve its visibility and clout by holding an annual scrutiny and continuing to better publicise its plans and progress. Upon reflection of the scrutiny agenda there was too little time allocated for objective 4, which meant that the time spent reporting on three broad topics - education, training and employment within this objective were spread thinly within the equal amount of time spent just on the diagnostic pathway (objective 2). At future scrutiny days we will ensure objective areas are split if necessary to ensure that there is sufficient time to thoroughly explore the prioritised area and allow enough time for questions and answers.

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Appendix 1 – Scrutiny Minutes

Hertfordshire All Age Autism Partnership Board Scrutiny Group

Friday 23rd February 2018

What has Board achieved? - Independent Chair to the All Age Autism Partnerhip Board

In 2015 under objective 1:

NAS posters in GP surgeries Recruited autistic colleague Diagnostic pathway Focus on training Public event

In 2016:

Le recruited as independent chair. Expert By Experience recruited to the Board and produced a welcome guide Formed a Business Exec – agreed our principles of impact – showed

indicators chart.

Board has achieved in 2017: More presentations around employment Taking part in promoting supermarket autism hour Identify first language statement Demand statement in draft Adult autism diagnostic pathway Presentation on collaboration working at the NAS professional conference Purple folder coproduced and now available E-learning now published

Why are we doing the scrutiny? Current strategy ends 2017 Review progress Understand the gaps of knowledge In Board meetings try to understand figure – lack of data and analysis Joined up working and collaborative practices Accountability – find problems on the grounds Review purpose and function Smaller goals for 2018 onwards – review how far got with objective 2 Publish a report from today and put in Horizons magazine.

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Response to the scrutiny scope – Representatives from NHS East & North Hertfordshire Clinical Commissioning Group

The following points were raised: Increased number of referrals for Autism – showing little or no signs of autism

which is a lot of pressure on diagnostic services. Waiting time for children autism referrals – 9-12 months, which needs

addressing. Limited/lack of support who are waiting for autism diagnosis.

Providers are: West Herts HCT are delivering autism diagnosis. East and North Herts Hospital Trust are delivering in paediatric teams. Across the County is PALMS – post diagnosis. Family Services - parenting support group.

It was reported that feedback is being received by carers but delays are being experienced with getting the assessment and diagnosis.Organisations need to be working together – as there is lack of information/gaps.

An essential diagnosis pathway is required:-Multi agency – holistic – multi disciplinary – need to work together to deliver an autism diagnosis.

For a diagnosis: Recognition – at home, school or health and social setting. Referral – needs to be robust. Health care professionals should be making a

referral which contains relevant information from parents. Diagnostic team – has to be a multi disciplinary team – who triage, assess,

diagnose and signposts to other services.

Next Steps: Variation in waiting times for diagnosis for West and East/North Herts. Up to

1060 young people waiting and a way needs to be found on how to prioritise.

Need more data – ask providers – by looking at each age band and school years. Risk assessments need to be undertaken.

Been in touch with NHS outside Herts – so run additional diagnostic clinics over weekends.

Redesign coproduction with families and partners. Good opportunity to see/help families.

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Longer term: Recognise new and emergent behaviours, which include demand avoidance

type presentation and co-morbidities. We have to be mindful of our responsibility to these young people.

In 2012 very tied to NICE guidelines – reviewed NICE in 2017 – why we challenge the support needs – recognising their physical health.

Redesign occupational therapy – adaptations including sensory needs and daily living.

Redesign speech therapy.

Developing clear and consistent pathways for diagnosis - Senior Commissioning Manager, HCS, Integrated Health & Care Commissioning and Consultant Clinical Psychologist, HPFT

The main objective is an autism diagnostic pathway for adults. It was felt that HCC needed to come together with HPFT.

HPFT have a local implementation Group (LIG) set up to ensure all stakeholders are involved in the review of the current pathway.

The Review – worked with HPFT for data – asked group psychologists about wait times, assessments.

What we don’t knowNumber of adults that might come forwardNumber of adults in Hertfordshire with a diagnosis, some go privately and this information is not captured.

How do we do this better? Prepare GP and primary care trusts to make better referrals – with paper

sessions and training over the year. SPA – single point of access – self referral. Give them the information they

need to triage work. Ask clients about their experiences of autism. Break up utility pathway - triage information with the multi disciplinary team

Then a decision will be made about whether the client will have a diagnosis or not.The diagnosis queue – is looked at by need and risk.

Diagnosis utilises: ‘Itch’ of something not right. Lives very impacted A matrix will be used to define diagnostic utility.

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Working with HCT with Integrated Needs Assessment - will have assessment depending on what triage said.

Need to ensure health and social care links are stronger – this piece of work is ongoing.

Next steps:- Having public health on board and getting information from them. Would like the Autism Board to support getting information recorded. JSNA will highlight if there is a lack of information. Diagnostic pathway – a mental health need and/or autism diagnosis – mental

health services should make reasonable adjustments for autism. Looking at training Mental Health colleagues.

Question raised - around buying additional capacity to identify risk and implementing a pathway. Time frame implementation – decision will be taken at transformation board – deadline by end of March – looking at capacity. Hoping to go live in April.

Question raised - How and when are we going to implement a single diagnostic pathway? Challenging providers – Herts Valleys have a smaller source of paediatrics and East and North Herts have a larger paediatric team – very different offers.It was agreed that a business case needs to be done – then follow formal process – then buy more for Herts than we are currently doing.

Question raised – what is the age of transition? – people are being told different information. It was highlighted that a children’s local reference group needs to be set up.

It was raised that in schools the workforce may have insufficient skills to say if a child has autism or not – which needs addressing.

Quality of referral information – local implementation groups are in different areas in Hertfordshire – need to ensure we get out to all GPs. Contact details needed from voluntary sectors.Need to look at prevalence of population – under referring GPs.

Action: Data collection – need to look at prevalence of population – under referring GPs.

Question raised: Disparity of services – impact.We need to ask public health to do JSNA? We need to look at prevalence of population and under referring GPs.

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Question raised: about considering a ‘Union’ of relevant expertise – to have one contract for expertise and one price for diagnostic pathway.It was agreed that this is the Board’s vision and recommendation.

Response to the scrutiny scope 4.1 – Head of Integrated Services for Learning & SEND Strategy Work Stream Lead for Autism, Hertfordshire Children’s Services

Autism Quality Offer: Impact autism – magnifiers and mitigates. Ability approach of the school/setting Mainstream/Specialist Approach.

Autism work stream 1 – work on going.

Autism work 2 – will be sent out electronically.

Achievements – DSPL – making more directives.

Challenges and dilemmas: Engagement of schools – deliver to schools. ‘More than our fair share’ – supportive schools feel targeted School/Ofsted performance indicators academic results v improved overall life

chances Diagnostic pathway – benefits of a diagnosis and support without a diagnosis Keeping children in local provision – links to health and social care (still some

challenges – multi agency needs need to be joined up.) AT Training – 4,500 staff in Tier 1 (190 schools) and 960 staff in Tier 2 (400

schools)

Transition to Adulthood – Head of Service 0 – 25 Together Service

18-25 service: Staff with an autism lead embedded in localities About getting ‘a life not getting support’ Better informed commissioning to broaden range of services on offer locally Transforming Care Partnership – register who are most at risk.

Care Education Treatment Review – to look at child/young people

Need to consider - hospital admission or residential setting?Connected Lives – concept being implemented to post 18.

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Professionals to be more dynamic – new culture about a ‘not knowing approach’ and an absolute commitment to getting it right TOGETHER.

Next steps: Increase and Differentiate Offer Wider system integration/role merging Embed one plan, Do, Review Cycle

0-25 can be followed on – twitter@025together.

Training – Representative from Hertfordshire YC LDD team, Services for Young People

4.2.1 looking to implement this.All four colleges have a transition support worker in place.

One DSPL area – has appointed a TSW to work with a vulnerable SEND young person in Broxbourne.

Action research project to support young people leaving SEMH provision.

4.2.2 ensure that professionals in schools and colleges have high expectations of young people.

4.2.3 ensure that every young person aged 14-18 with a diagnosis of autism and their parents/carers have access to the appropriate information and support.

2012/13 the DFE removed the duty to provide independent, impartial careers information, advice and guidance from the local authority and gave it to schools and colleges to provide/commission.

YC Hertfordshire provide impartial and independent careers information/advice and guidance as a traded service but do provide some statutory services for those with an EHCP including review attendance and preparation of the PFA transition plan.

YC Hertfordshire have a comprehensive website that supports careers planning and details the ASD specific youth projects.

4.2.4 Ensure young people are listened to and supported to make decisions about their lives and discuss these with their families.

All colleges have student councils. Springboard has student reps at both sites and they attend regular forums to

represent student views. YC Hertfordshire has a small team of supported employment advisers who

work with young people.

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Supported Internship programmes

Work Solutions – Head of Service for Work Solutions

Autism work has increased in Work Solutions:-22% of total caseload30% of those supported in work32% of referrals/enquiries33% of those placed into employment in last year

Aims: To give everyone the opportunity to explore their employment. To offer as much or as little 1:1 personalised support as needed to secure and

maintain a paid job. Utilise supported employment ‘place then train’ method

When referred: Assessment of benefits, skills, abilities, personal preferences and barriers –

vocational profiling. Employer engagement – personalised to arrange ‘work tasters’ in real

settings, vacancies, adjustment to individuals as no ‘one size’. Job search – match the individual to the most appropriate job through job

analysis On going in work support – career progression.

Employer engagement: Personalised approach Cold calling and visiting companies No magic database full of ‘friendly employers’. 50 new contacts per year

Barriers/challenges: Eligibility Motivation – carer expectations vs person with Autism Anxiety Fixation on one job/company – reluctance to volunteer try other options Flexibility required by employers

Work challenges: Communication difficulties Will not always pick up on team issues May come as insensitive/abrupt Small in work changes Environment

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Exaggerated or limited self-perception.

Action: it was highlighted that the SEND Strategy Work Stream Lead for Autism is a ‘role model’ for his work stream – exceptionally good work, which he should be praised for.

It was raised that elective home education numbers are rising – a group is being set up to understand the reason for this.

Question raised – around Exclusion rates – how many exclusions & what are the reasons?We need to focus to reduce the number of exclusions. We can gain a better understanding of the numbers, through better data and sharing of information.

Question raised - concerning careers advice Parents and young people are not supported unless the school or college buy into the service. There is different eligibility criteria for different areas.It was advised that the parent needs to ask the advisor at the school/colleges as to what services or internal mechanisms are in place. Parents need to be clear in new settings.Action: AIG Team Leader, Hertfordshire YC LDD Team to send round useful web sites links.

Question – could we build a case for LD nurses for children and adults for those with or without LD?Suggestion that the Purple Folder be offered to under 18’s

Action: Representative from Carers In Hertfordshire to send round details about access to the Housing event which is to be held county wide.

Summary of morning

The Scrutiny Officer had reported the following to Scrutiny Chair regarding his opinions of the Board:- Consistent approach. Data collection – none – working with JCNSA. Changes – buying in other agencies – training and changes need to be in place. Conversations with health and social care Universal transition age Prioritisations – all have the same.

Governance Review – Head of Innovation – Family Safeguarding Programme Manager

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Board needs to agree objectives.

Why does the HAAAPB exist? Good work that has taken place. The focus is on everything of an autistic person – a champion. Scrutinise challenge. One difference the Board has made is reassurance and pro-actively trying to

change things in Hertfordshire. Various service providers talking to each other. Assess the gaps? All targeted approached. Statutory requirement for all LA’s to have an Autism Board, Hertfordshire decided

to have an all age autism board.

Opportunities: Assess plan/do/review More targeted approach Overlaps with other Boards Key leaders are missing from the Board KPIs This Board can demonstrate through scrutiny day Where would strategy go if no Board?

Action: outcomes of this scrutiny need to be flagged up to Health and Wellbeing Board.

Action: annual process – report at end of financial year.

Board Functions: Strategy. Monitoring progress Stakeholder communication Decision making

Action: - useful if we had case studies – very theoretical – to see what is going on?

Action: All Age Autism Board to be publicised in the Horizon magazine and into different forums.

Action: an informative newsletter to be done – which is a way of spreading the work of this Autism Board.

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Action: Business Exec Group to continue to meet every two months and full meetings to meet every 3 months.

Action: Collecting data and matching funding – then make collective decisions.

Scrutiny PanelScrutiny Chair – Expert By ExperienceIndependent Chair to the All Age Autism Partnership Board Trainer/Advocate/Researcher, Herts Health WatchExpert By Experience4 x Parent/Carers of young person with Autism

OfficersOperational Director, Adults with Disabilities, Mental Health and Autism, Hertfordshire Adult Care Services Operational Director, Specialist Services, Hertfordshire Children’s Services Senior Commissioning Manager Mental Health, Integrated Health & Care Commissioning, Hertfordshire Adult Care ServicesAssistant Director for Maternity, Children and Young Peoples’ Commissioning (0-25), North & East Herts CCGDeputy Head of Service, Hertfordshire Adult Care ServicesScrutiny OfficerHead of Innovation – Family Safeguarding Programme ManagerNote takerManger - Hertfordshire All Age Autism partnership Board

Presenters/WitnessesSTP Programme Manager Maternity Transformation, NHS East and North Hertfordshire Clinical Commissioning GroupConsultant Clinical Psychologist, Interim HPFT Head of Recovery and Psychological ServicesHead of Integrated Services for Learning, Hertfordshire Children’s ServiceSEND Strategy Work Stream Lead for Autism, Hertfordshire Children’s ServiceHead of 0 – 25 Service, Hertfordshire Children’s ServiceIAG Team Leader, YC Hertfordshire,Head of Service, Work Solutions, Hertfordshire Adult Care ServicesEmployment Adviser, Work Solutions, Hertfordshire Adult Care Services

Others PresentCommissioning Officer, Integrated Health & Care Commissioning Commissioning Manager, CAMHS, Integrated Health & Care Commissioning

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Appendix 2 – Glossary

ACS Adult Care Services

ASC Autism Spectrum Condition

ACSIS System for recording and storing information on all adults who access

HCC Adult Care Services

ADS Adult Disability Services

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ADOS Autism Diagnostic Observation Schedule

C4A Carers of Adults with Autism or Asperger’s

CIN Children in Need

CRG Clinical Reference Group

CYP Children and Young People

DCT Disabled Children’s Team

DfE Department for Education

DISCO Diagnostic Interview for Social and Communication Disorders

EHCP Education, Health, Care Plan

ENHCCG East North Herts Clinical Commissioning Group

HAAAPB Hertfordshire All Age Autism Partnership Board

HAFLS Hertfordshire Adult and Family Learning Service

HCC Hertfordshire County Council

HCT Hertfordshire Community Trust

HPCI Herts Parent Carer Involvement

HPFT Hertfordshire Partnership Foundation Trust

HVCCG Herts Valley Clinical Commissioning Group

JSNA Joint Strategic Needs Assessment

LA Local Authority

LAS Liquidlogic Adults’ System

LCS Liquidlogic Children’s System

LD Learning Disability/ Difficulties

LIG Local Implementation Group

MDT Multi-Disciplinary Team

MH Mental Health

NAS National Autistic Society

NICE National Institute for Heath and Care Excellence

PALMS Positive behaviour, Autism, Learning disability and Mental health

Service

PB Partnership Board

PIAP Post Inspection Action Plans

SASS Specialist Advice and Support Service

SEMH Social Emotional Mental Health

SEND Special Educational Needs and Disabilities

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TSW Transition Support Worker

YC Youth Connexions

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hertfordshire · web viewin hertfordshire, this is in the form of a preparing for adulthood (pfa)...

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