NHS North Hampshire Clinical Commissioning Group NHS Fareham and Gosport Clinical Commissioning Group NHS South Eastern Hampshire Clinical Commissioning Group NHS West Hampshire Clinical Commissioning Group NHS North East Hampshire and Farnham Clinical Commissioning Group Response to the ‘Draft Hampshire Autism Strategy for Children and Young People 2014 - 2017 public consultation’ from 18 th August – 7 th November 2014 Report by Heidi Robinson Commissioning Officer Hampshire County Council 1
Transcript
NHS North Hampshire Clinical Commissioning Group
NHS Fareham and Gosport Clinical Commissioning Group
NHS South Eastern Hampshire Clinical Commissioning Group
NHS West Hampshire Clinical Commissioning Group
NHS North East Hampshire and Farnham Clinical Commissioning Group
Response to the ‘Draft Hampshire Autism Strategy for Children and Young People 2014 - 2017 public consultation’ from 18th August – 7th November 2014
Report by Heidi RobinsonCommissioning OfficerHampshire County Council(Report format based on the Adult Autism Strategy Response Report by Rachel Dittrich, Research Manager, Hampshire County Council)
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Executive summary
The consultation on the Draft Hampshire Autism Strategy for Children and Young People took place to find out whether or not stakeholders and the general public agreed with its approach and points of action for improving services for children and young people with autism in Hampshire.
The consultation opened on 18 August 2014 and closed on the 7 November 2014. The consultation was publicised widely – communications were sent to all known contacts with a connection to autism in Hampshire, including individuals, schools, colleges, universities, service providers and many other organisations.
A questionnaire via which people might present their views was made available in both an online and hard copy format. Four consultation events were held across Hampshire where people could come along in person and find out about the strategy and put forward their views and/or complete a consultation questionnaire whilst they were there. Copies of the draft Strategy, the consultation questionnaire and the details of the consultation website were made available at these events, in case people wanted to take these away to peruse and complete following the discussions that took place. These documents were also available in audio and braille format which people could request, however, no such requests were received.
79 people responded to the consultation. Five people indicated that they were a person with autism, 47 were carers or parents of a person who has autism and 5 were a brother, sister, grandparent or other relative of a person who has autism. 34 worked with people who have autism. Some people fitted into more than one category (for example, a person with autism who is also a parent of an autistic person).
Key messages include:
The majority (48%) thought the Strategy contained good plans which could improve things for people with autism.
Of the 79 people who responded, 29 (27%) thought that the Strategy would not work unless more money was made available to implement it.
Most people thought the ‘we will’ action points provided a good way forward. However, some thought the wording of these was ‘lengthy’ and ‘too repetitive’.
A number of people wanted to see more detail on how the ‘we will’ points would be implemented, by whom and by what date. They also wanted to know what arrangements there would be for the quality assurance and monitoring of the ongoing work that the Strategy would generate.
A few people thought that there was too much in the Strategy for children and young people with high functioning Autism or Asperger Syndrome.
Other respondents felt that there was not too much for children and young people with low functioning Autism, specific learning difficulties, motor skills difficulties, complex health needs, those without mental capacity or those who are non-verbal.
There were a number of elements that people thought were the best bits of the strategy. Some of the frequently mentioned were:
A ‘clear pathway for diagnosis’
Recognition that ‘one size does not fit all’
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More ‘support for families’
Awareness raising and encouraging ‘everyone to think autism’
That a child or young person does not need a diagnosis of Autism to access support services
There were a number of things that people thought were the worst bits of the strategy. Some of the frequently mentioned of these were:
There is little mention of ‘employer engagement’ and this needs to be a distinct piece of work, as many young people with Autism often struggle to find employment or apprenticeships
The ‘limited resources for implementation’
There is an over-reliance that education, health and social care will all work well together without recognising the ‘danger that different services will develop their autism strategies at differing timescales. Some services will be more geared up than others’
There is no timescale given to ‘meet targets’
It was very unclear how the Strategy will be successfully implemented
There were things that people thought were missing from the Strategy. Some of the things raised as missing were:
Recognition of Pathological Demand Avoidance (PDA)
Little mention of Occupational Therapy service and the added value that they may bring to a child or young person with autism
There was no mention of independent advocacy
Details about how young people can transition beyond school if they don’t want to access further education or university but want to gain employment or an apprenticeship
Support for children and young people with additional needs, such as motor skills
Specific details of the support available for the under 5’s
People made very helpful comments to highlight areas of omission and areas for improvement. These comments will help to strengthen the final Strategy before its publication in April 2015.
13. Appendix A – Public consultation information……………………………………………….27
14. Appendix B – Questionnaire……………………………………………………………….28
15. Appendix C – Children and young person’s autism strategy press release…………………...33
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16. Appendix D – Flyer that was widely circulated to generate interest in a focus group event…..35
17. Appendix E – Flyer for a young person’s group where we facilitated a focus group…………..36
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1. Introduction
Hampshire Autism Partnership Board (HAPB) was set up in 2010 in response to the Autism Act 2009. In November 2012, HAPB published a three year strategy for Adults with Autism. It was agreed that this should form part of an ‘across the lifespan’ Autism Strategy and that the Children and Young People’s Autism Strategy would be developed to complete this approach. The implementation of the strategy will be overseen by the Hampshire Autism Partnership Board.
The Draft Children and Young People Strategy was also intended to respond to central government guidance and legislation and reflects the National Autism Strategy, ‘Fulfilling and Rewarding Lives, 2010’ and the re-fresh of this Strategy ‘Think Autism, 2014’ and other priorities that have been agreed locally. Once finalised, the Hampshire Autism Strategy for Children and Young People will form part two of the Hampshire Autism Strategy.
The three year Children and Young People’s strategy has been developed by the multi-agency Hampshire Children’s Autism Strategy Group through consultation with children and young people with autism, parents and carers and staff who work with children and young people with autism within voluntary, independent and public sector organisations. The Children’s Autism Strategy Group is a partnership including health, social care, education, voluntary sector and parents of children with autism.
The consultation sought the views of stakeholders and the general public on the final draft Hampshire Autism Strategy for Children and Young People. It endeavoured to find out whether or not people agreed with the approach and the points of action for improving services for children and young people with autism in Hampshire as set out in the final draft Strategy.
2. How the consultation was undertaken
The autism consultation sought the views of the general public and particularly the following audience:
People with autism and those who may have autism (i.e. awaiting diagnosis). These may be children, teenagers or adults.
Parents, carers, relatives of people with autism.
Professionals and those who work with people with autism and their families.
Other interested parties, e.g. Councillors.
3. Questionnaire
A questionnaire was developed through which people might formally present their views. This was made available in various formats:
A Standard version, available online via a dedicated webpage and hard copy (Appendix A).
Audio, Braille and large print versions of the standard Strategy documents and questionnaires were developed but not requested or used by any respondents.
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The questionnaires were developed with support from people in social care, health care, education and the voluntary sector, people with autism, and parents of children and young people with autism. The questionnaire was taken to the HAPB to help towards ensuring validity and reliability.
4. Publicity and events
The following approaches were adopted to ensure that there was clear communication with the target audience:
There were 4 public children and young people’s autism strategy consultation focus groups held across Hampshire. The focused events were aimed at any child or young person, both with and without with autism (i.e. awaiting a diagnosis), and parents, carers, relatives of people with autism. At the events, participants were provided information about the final draft Strategy and encouraged to complete a questionnaire. All events were accessible by local transport and within community venues. Community venues have been evidenced to encourage attendance, as people are familiar with them. This is especially important for people with autism, who may feel anxious attending somewhere unfamiliar.
The times and the geographical areas for the events were developed and held in partnership with Speakeasy Advocacy Service in Basingstoke, Hampshire Parent Carer Network (HPCN), National Autistic Society (NAS) and the Next Generalization Socialisation (NGS) group run by Friends of In-Touch in Fair Oak and Hampshire County Council. The focused group meetings were held both in the morning and in the evening, as requested by the members of the groups concerned. For further information about the events, please see Appendices C- G
There was Hampshire County Council (HCC) Corporate Communications Team involvement who encouraged newspapers and local radio stations to advertise the consultation.
The Communications Officer from Hampshire County Council’s Strategy and Commissioning Team also provided an article for the HCC Health and Wellbeing newsletter, contacted all of the 5 Clinical Commissioning Group Commissioning Leads in Hampshire (which includes provision to disseminate to GPs), provided 2 separate articles for a weekly e-Schools Communication and other interested parties in both Adults and Childrens Education, Social Care and Children and Families directorates and other colleagues in Public Health.
All contacts gained from previous ‘Autism participation – Have your say’ consultation, the 2012 Adult Autism Strategy, autism voluntary organisations and support groups within Hampshire, Hampshire Autism Partnership Board members, Clinical Commissioning Group Leads and all contacts with a connection to people with autism known in Hampshire received direct email advertising of the consultation and events being held around the County. All were provided links to the online questionnaire and information on how to obtain other formats. All contacts were requested to disseminate the information.
On average every four weeks emails were sent out, to the same network as above. Each email was updating people on the consultation and the reason for the consultation.
Hampshire Autism Voice, local branches of the National Autistic Society, Hampshire Autistic Society, Hampshire Parent Carer Network and Parent Voice advertised and disseminate to their audiences. Parent Voice is Hampshire wide and has 2,500 members, of whom 60% are parents with children with autism.
Schools, Colleges, Universities and providers of autism services were provided with same information for dissemination.
A dedicated telephone system for enquires was set up in Hampshire County Council to take enquires and support the postal request for Strategy documents and questionnaires.
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Responses received via routes other than the normal response routes, i.e. letters and comments made at the events, were read/noted and taken into consideration.
5. Ethical considerations
After the public consultation ended on the 7th December 2014 all of the formal consultation responses received were collated and processed by colleagues in Hampshire County Council’s Research & Intelligence Unit. After processing, numeric data tables of the results were prepared by a Hampshire County Council Market Research Assistant. Preparation of results was overseen by a Senior Market Research Officer, whose professional affiliations encourage the promotion of high quality standards of social research1 and are dedicated to the support, promotion and enrichment of research², whilst upholding the highest standards of public consultation³.
People’s comments were extracted by R&I which I then analyzed using the principle of ‘analytic induction’. I identified principles and themes from the data that applied to the subject of study to identify the most frequently occurring themes and concepts in what people said.
6. Who responded?
79 people responded to the consultation. 5 people indicated that they were a person with autism, 47 were carers or parents of a person who has autism and 5 were a brother, sister, grandparent or other relative of a person who has autism. 34 worked with people who have autism. Some people fitted into more than one category (for example, a person with autism who is also a parent of an autistic person). There were no other categories such as ‘other’. Respondents could choose as many categories as applied to them. All 79 respondents chose a category or categories to describe themselves.
Of the 34 people who worked with people with autism, 29 gave further information on what their role was. 1 was a day service provider, 5 were teachers (including 1 specialist autism teacher in a special school and 1 who was a SENCO & teacher), 2 described themselves as SENCOs (Special Educational Needs Co-ordinators), 1 was a careers adviser, 3 were general medical practitioners (GPs), 2 were speech and language therapists, 2 were paediatricians (1 was community based), 1 was a play worker, 1 was a support worker, 1 was a support service manager for a young people’s charity, 2 were occupational therapists for children and young people, 1 was an assistant head teacher, 1 was a head teacher, 1 was a special needs assistant, 1 was a transition social worker, 1was a teaching assistant, 1 was an advocacy organisation, 1 was an unpaid worker in a special school and 1 response was a whole service response from ‘support services for young people in Hampshire County Council’.
7. How people described themselves
1Adelaide Morris, member of the ? Social Research Association, http://the-sra.org.uk/, ² Market Research Society, https://www.mrs.org.uk/ and the ³ Consultation Institute, http://www.consultationinstitute.org/home/.
79 people responded to the consultation. 5 people indicated that they were a person with autism, 47 were carers or parents of a person who has autism and 5 were a brother, sister, grandparent or other relative of a person who has autism. 34 worked with people who have autism. Some people fitted into more than one category (for example, a person with autism who is also a parent of an autistic person).
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7.1 Gender
Figure 2
79 respondents indicated their gender. 12 were male and 67 were female.
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7.2 Ethnicity/race
Figure 3
79 people indicated their ethnicity. 73 were White British and 2 were Mixed race. One person picked the ‘any other’ category, 3 picked the ‘I do not want to say category’ and 1 picked the ‘any other’ category but provided no additional text to say what they meant by this.
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7.3 Age of respondents
Figure 4
65 people indicated their age. 1 person (1%) was aged 16-18, 4 people (5%) were aged 18-24, but the majority of 60 people (76%) were aged 25 years or over. 14 people chose not to give their age.
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8. What people told us
Where numbers of people who made a particular comment are given they should be treated with caution because it is necessary to use a degree of interpretation when quantifying people’s views. It is also possible that a few respondents may have contributed to more than one consultation response. If this is the case it means that their point might be recorded as the view of more than one respondent. Nonetheless, the numbers have been included because they may give some indication of commonality of feeling amongst respondents and this is important in order to give the full picture regarding people’s views.
Comments that people made in letters and/or e-mails or under ‘any other comments’ on the questionnaire, have been placed under the other more specific questions, where appropriate, for the sake of clarity. One response was a whole service response for ‘Services for Young People, Hampshire County Council’.
Where any personal names have been mentioned, they have been changed and place names anonymised in quotes where they might easily identify individuals.
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9. Themes Identified:
Figure 5
People’s comments were analysed using the principle of ‘analytic induction’. Careful data analysis identified principles and concepts and these were then further refined into the most frequently occurring themes in what people said. I identified five main themes, which were funding, quality of service(s), quality of provision, access and implementation.
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Question 1: Will the strategy make life better for children and young people with autism?
Figure 6
Of the 76 respondents who answered this question, 38 people (48%) agreed that the Strategy would make life better for children and young people with autism, 35 people (44%) were not sure if the Strategy would make life better for children and young people with autism, 3 people (4%) thought that the Strategy would not make life better for children and young people with autism and 3 people (4%) did not reply to this question.. Looking at responses it can be inferred that almost equal numbers of respondents thought positively about the Strategy as those who were not sure that it would make a difference. Equal numbers of respondents chose not to reply to this question or thought that the strategy would not make life better for children and young people with autism.
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9.1 Question 2: What are the best bits of the strategy?
Many respondents made positive comments, e.g. ‘positive and forward thinking’, ‘the intentions are clear’, ‘the idea is brilliant and much needed’ and ‘I found it extremely positive’. Some also commented that they were very glad to be ‘listened to’ and thankful that their views would be taken into account. However, there was some scepticism and some questioned how the ideas might be put into practice especially in view of cuts that are currently being made to other areas of Children’s Services, and one respondent thought that the Strategy was in danger of simply becoming a ‘wish list’. Two respondents did not think that the Strategy had any ‘best bits’ and one respondent commented that the Strategy was ‘not suitable for the most disabled group’. One respondent also thought that the Local Autism Ambassadors scheme was a really good idea. Some of the comments, divided into the most commonly occurring themes, include:
Funding:
‘All sounds good. Hard to improve some areas without funding’
‘I think it will improve things for children and young people if all the 'we wills' are implemented and aren't affected by the cuts’
‘No extra money means much of aspiration may not be realised’
Quality of Service(s):
‘Continue to work in partnership with Hampshire Autism Voice (HAV), Hampshire Parent/Carer Network and Parent Voice to ensure that the needs of families with a child/young person with autism are included when designing and planning services’
‘Ensure that children and young people with autism have an opportunity to prepare for work and develop their social skills through programmes of learning and support systems within education provisions’
‘Not suitable for the most "Disabled" group’
‘There are good intentions, but little that is Specific, Measurable, Agreed, Realistic and Time-bound. There is a risk of this becoming a wish-list with little outcome of benefit’
Quality of Provision
‘Consideration of all the different aspects of the needs of children and their families as they journey into adulthood’
‘Providing relevant information to children and young people with autism and their family or carers at the point of diagnosis to help them understand the condition and access local support’
‘Recognises the importance of 'transition' for children/young people’
‘Promotion of Autism Passport, Gateway cards and similar supportive schemes’
‘Local autism ambassadors - really good idea! And, also, glad that the importance of support for children in schools is based on need not diagnosis (access to services and support should not depend on diagnosis)’
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Access
‘Improved access to targeted education specifically designed to meet their needs’
‘Ensure schools have access to social skills and 'skills for life'’
‘Ensure there is a single point of access to diagnostic services, where referrals are allocated to the most appropriate service’
‘Ensure that any additional needs identified as part of the assessment are considered and does not preclude a child/young person and their family accessing the services they require. Ensure that children and young people and their families are aware of the support that is available and how to access it’
Implementation
‘I found it extremely positive reading. It seems that everyone will work together. There needs to be coherent information sharing between all agencies and policies based on best practice’.
‘It clearly lays out what needs to be done and pulls together a very complex web of required actions from all the groups that need to work together to make improvements possible’
‘Educating people to 'think autism'’
‘All of the elements in the strategy are good, sensible and needed. The question is can it be implemented? Are there resources available? Will everyone buy into it? I remain to be convinced’
‘Positive and forward looking - clear document laying down a 'pathway'’
9.2 Question 3: What are the worst bits of the Strategy?
Some respondents suggested that the Strategy would require a cultural attitude shift across different services, which would take a great deal of time, as there is an over-reliance on health, education and social care all working together and developing the same strategic and operational decisions at the same time and at the same pace. Some thought that the ideas might not be put into practice and that the Strategy might just become ‘a wish list’ and/or that insufficient resources would be allocated.
Some respondents also thought that there was not enough detail in the Strategy around how young people who don’t want to go into further education, might access employment and go on to become independent. Two respondents thought that the Strategy was contradictory – on the one hand it says that you do not need a diagnosis of Autism to access support services, and on the other it says that a diagnosis is a ‘gateway’ to support services. Another respondent felt that children and young people with Autism but also with an additional difficulty, such as a lack of motor skills, are not catered for within the Strategy.
Some respondents expressed the view in response to this question that the Strategy is too non-specific or does not state how its targets will be achieved, i.e. it does not include an implementation/action plan with success measures, timelines for implementation and allocation of responsibilities and resources. Another respondent thought that there was not enough emphasis on those who have more subtle forms of Autism and who may not meet the criteria for a diagnosis,
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whilst others thought that it did not meet the needs of the children and young people who are most profoundly affected. One respondent mentioned that they thought that there is not enough specialist school provision, particularly in the New Forest and another respondent commented that there was no mention of early screening programmes. Two respondents thought that there were no ‘worst bits’ of the Strategy. Some of the comments, divided into the most commonly occurring themes, include:
Funding:
‘No indication of where the key funding is coming from and line of responsibility for delivery. How will the outcomes be measured?’
‘Not SMART enough on delivery, monitoring outcomes, costings’
‘I don't understand how you are going to do any of it when you are cutting support and services across the board. How can you provide all the extra training and support needed? One example is the Gateway Scheme, where you are slashing the budget by almost a third. It's already woefully inadequate; in this you state you will be making people aware of it, whilst at the same time you will be stopping or reducing funding. What's the point in making more people aware of things you can't afford to provide?’
‘Not identifying how or when these are going to happen’
‘Due to the financial situation, there will be no additional resources to action the strategy. How will the plans be realised?’
‘No additional funding - waiting times for diagnostic assessment are several years long and accessing support without a diagnosis can be very difficult’
‘Many of the proposals are well known and are a requirement under the new Children's and Families Act along with the regulations governing the operation of CCGs. Unfortunately there are lots of areas where a lack of funding and resources, especially in Health, will mean that they are not practically achievable’
‘No extra money means much of aspiration may not be realised’
Quality of Service(s):
‘Emphasis on collective working between partner organisations’
‘None but whatever is agreed requires 'buy in' by all otherwise, what's the point of investing time and money in just words?’
‘There is a danger that different services (e.g. education, health care, social care) will develop their autism strategies at differing timescales. Some services will be more geared up than others’
‘The strategy relies upon a number of Organisations working together to make this a reality. Not all the things that you are suggesting are achievable unless all these Organisations work together effectively. This is a huge task and one that will need significant time and resources to make things happen. However as 'there are no additional resources to implement the autism strategy' I am not certain this will be possible’
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‘How can knowledge & awareness of autism be shared effectively across all professionals?’
‘Not enough emphasis on the wise range of individual variation within the Autistic Spectrum and the needs of the children who don’t fulfil criteria for a diagnosis on the Autistic Spectrum’
‘The strategy relies upon a number of Organisations working together to make this a reality. Not all the things that you are suggesting are achievable unless all these Organisations work together effectively. This is a huge task and one that will need significant time and resources to make things happen. However as 'there are no additional resources to implement the autism strategy' I am not certain this will be possible’
Quality of Provision:
‘The responsibility to influence employers is seemingly left to schools and/or training providers, neither of which have the time or knowledge to undertake this role’
‘There needs to be a separate and definite role for employer engagement, identifying employers who will employ and have already employed autistic members of staff as well as promoting the benefits of autistic staff with HR managers etc. This is already being achieved in Germany!’
‘Not enough emphasis on the wide range of individual variation within the Autistic Spectrum and the needs of the children who don’t fulfil criteria for a diagnosis on the Autistic Spectrum’
‘There is not enough development around the forms of support that could be accessed individuals who do not wish to have further education after school’
‘There should be greater recognition given to the difficulties that young people seeking apprenticeship and employment opportunities face on a regular basis’
‘For children like my own daughter who does not have an Education, health and Social care plan, does not present with behaviour needs but does suffer with severe anxiety and a processing delay, there is not enough staff to ensure that these types of children have the support they need. They slip under the net as resources are always given to those in priority e.g. those presenting with behaviour needs and never enough finances to stretch for help for children like mine’.
‘Geared far too much towards "High Functioning" Autism too much! Not enough being done for the "Most Complex" Minority Group(Low Functioning Autism/SLD/Complex Health/Needs/Without Mental Capacity/Non-Verbal). What is being "Said" on paper is not happening on the ground’
‘There is failure to mention of the impact of motor skills difficulties within the population who have ASC. Motor skills issues are a common feature of ASC and often are the result of poor sensory processing. There is good evidence from research to demonstrate that OT treatment of the sensory and motor issues leads to improvement in function’
‘No mention of early screening tests; every 2 year old should be properly screened as standard....this is being rolled across the USA as part of their new strategy’
‘More resourced provision and specialist schools required, especially in the New Forest, for higher functioning children with autism who cannot cope in mainstream education but who would flourish in smaller classes with peers who have similar verbal and physical abilities’
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Access:
‘Not enough being done to engage/seek the views of Parent/Carers of the "Most Hard to reach group". Views need to be actively sought from those families whose young people have NO Mental Capacity and who access Adult Social Care/CHC Funding!’
'Access' is not defined - what does it actually mean to have 'access' to social skills programmes, or health and social care services?’
‘The social skills and skills for life relies on delivery by schools, there should be provision elsewhere’
‘There seem to be a number of contradictory statements. One example being: Page 7 para 2 "Receiving a clinical diagnosis of Autism is an important step towards a fulfilling life. It can not only help them and their families understand their behaviour and responses, but should also help with access to services and support." and Page 8 "Ensure schools are aware of the need to maintain support for children and young people in education settings without requiring a diagnosis and ensuring that a diagnosis is not a prerequisite to any form of help and support’
Implementation:
‘This comes as the final section of the strategy, presumably following the order for sections within the adult strategy. Ideally the section should appear much earlier in the children and young people strategy document. When working with children it is essential that all services link closely with the child’s parents/carers. This could be reflected throughout the strategy sections and needs to be given stronger emphasis’
‘People not receiving enough information - ensuring with all the budget cuts due to take place, that change will really happen and a difference will be felt by families Support for young people into further education and ultimately, employment’
‘It's a good document but rather aspirational. If all the points are taken up and achieved, then it will be useful. If it's printed and then put to one side it will be a waste of resources and effort’
‘Training across the board is essential to make professionals aware of what they are dealing with and how best to manage it. We cannot even get some GPs to sign up to Annual Health Checks let alone do all the good things you have suggested. Training will need to be compulsory before significant change will happen in my view’
‘If the proposed strategy of ensuring communication across the board was to be put in place, it would certainly help with transition from school to college but working in an educational setting I can not see how enough time can be given to follow through every individual case. The Senco's have so many children with a variety of individual needs, it would be near on impossible to provide and ensure every strategy is enabled to provide maximum impact’
‘Lack of respect and care of carers, parents who are part of the package with their children - a family unit, but mostly ignored’
‘I do not think there is worst bits of the strategy’
‘There are many good ideas – however, there are no clear plans with measureable and time bonded outcomes of how you will actually achieve the aims’
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9.3 Question 4: Is there anything important missing from the Strategy?
One respondent commented that there was no mention of the Thomas Outreach Programme and there was concern again amongst many of the respondents that there is no additional funding available to implement the Strategy, with one respondent mentioning the cuts currently being made to the Gateway Scheme. Five respondents were also disappointed that the Strategy does not mention Pathological Demand Avoidance (PDA). Some respondents also mentioned that there is currently no commissioned Occupational Therapy service, as well as no particular focus on services for pre-school children. Another respondent also mentioned that there is no mention of consistent, co-ordinated knowledge and training for all people around Autism, including training for families who have to care for a child or young person with Autism. Two respondents also said that current services focus too much on boys with Autism and they felt that there is less understanding of Autism in young females. Another respondent mentioned that they felt that there are very few services for young people aged over 18 once they have left further education at the age of 18. Some of the comments, divided into the most commonly occurring themes, include:
‘I wish there were more pre-school services - hardly any activities are suitable for children under 5, and not much support available’
‘Also as my child is female, there seems to be even less services still, as most are for boys, and there is less understanding of females with autism’
‘Occupational Therapy for children and young people is not given a high enough profile. We are the only profession that are trained to deal with the sensory aspects- from the motor to the behavioural and emotional consequences and the ability to support and train carers/educators etc., using specialist knowledge and training’
‘I don' t think it mentions independent advocacy as there will be some children and young people with autism that will be entitled to the statutory advocacy provision’
‘Very disappointed that PDA has been omitted. Again’
‘The fact that Pathological Demand Avoidance is not included in the strategy’
‘No mention of Thomas Outreach Programme which is a fantastic service for pre-school children’
‘There are young adults (Low Functioning/SLD) who have NO Opportunities post SLD school provision. Too profound for employment, No post 18 education provision (Life-Long Learning/Communication), barely any day service provision. It seems for the most severally affected Autistic young adults have NO choices (unlike Their more able/High Functioning Peers). Residential care homes seem to be the only option, always miles away from the vulnerable person’s family and community’
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9.4 Question 5: Please write any other comments about the Strategy
The Strategy is widely seen as being a positive step forward, but it needs to make clear that although there is no additional funding to implement it, there is a strong desire by all stakeholders to improve existing services and to use our current provision more wisely by employing a more ‘joined up’ approach both strategically and operationally to ensure a ‘whole life approach’ for children and young people into adulthood in Hampshire.
The Strategy also relies heavily on a desire to work collaboratively across a diverse range of agencies and services to ensure that best practice is adopted, adapted and widely shared, which must also translate into subsequent local action plans. We also need to be clear about how this will be quality assured to make it robust enough to be a useful strategy for all. It would be useful to explain the subsequent process of agreeing the action plans, as part of the conclusion of the Strategy, as many respondents are not aware of what happens next. Some of the comments include: -
‘I'm really pleased to see that this often 'hidden' disability is being taken seriously and that plans are being put in place to help autistic people and their families in Hampshire. Parents and schools are not always sure what they are dealing with and this, along with scant resources nationally and locally may lead to delay in diagnosis for many. Parents often have to be very persistent in asking for help over a long period of time. Please be mindful that they may not actually know what it is their child needs, they just know something is wrong and they need some help. Not all parents are well resourced and articulate, and even those who are may struggle to navigate a complex system. Therefore keeping the system simple will help, and it's important that schools and other key agencies are alert and intervene where necessary’
‘I would like to see information relating to autistic children’s personal information, to be passed freely to anyone within education who has direct contact with the child in question’
‘Older young people 16-25 need separate consideration and their parents need support as once they are this age there is little parents can do to influence care etc. because they are legally adult’
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10. Changes needed to improve the Strategy as a result of the consultation: -
Contents
There is a need for the following:
Some sections (i.e. 5 & 6) need to be added to the contents page as they are currently not listed in it.
1. Introduction
There is a need for the following:
We need to use consistent terminology. We need to decide if we are going to use the term Autism, ASC/ASD or Autistic spectrum consistently or explain at the beginning that they are used interchangeably. For example, page 5 uses the term ASD, whilst older documents which are quoted still term it Autism.
To make clear that there is no additional funding to implement the Strategy, but in its stead is a strong desire for existing services to adopt a more ‘joined up’ approach and to work collaboratively.
What is autism?
There is a need for the following:
It would be useful to include ‘motor difficulties’, as a frequently occurring ‘key area’ - which along with other features leads to functional difficulties (e.g. in the classroom and for self-care and independence).
We say ‘In this strategy, the term autism reflects the full spectrum and includes the diagnostic categories of Asperger’s Syndrome, High Functioning Autism, Pervasive Development Disorder, Autism Spectrum Disorder and Autism Spectrum Condition’. Do we need to also include the children in Hampshire with a diagnosis of Pathological Demand Avoidance (PDA)?
Do we also need to specifically mention children and young people with social communication difficulties/SCD?
Local Challenges
There is a need for the following:
We perhaps need to mention that In order to provide a holistic approach for families, it is essential for service planning in one provider (e.g. CAMHS) to take account of current services within a parallel provider (e.g. Community Paediatrics), so a coordinated team approach can operate for diagnosis and intervention. There may be some local challenges around practical plans and resource commitments for communication systems, joint training and workforce development that could be required (*this could also be a reference (or referenced)in section 2, ‘Developing a Clear and Consistent Pathway before, during and after a Diagnosis of Autism’ and in section 3, ‘Supporting Access to Health Services).
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There is also a danger that different services will develop their autism strategies at differing timescales.
2. Developing a Clear and Consistent Pathway before, during and after a Diagnosis of Autism
There is a need for the following:
We state on page 7 that ‘receiving a clinical diagnosis of Autism is an important step towards a fulfilling life. It can not only help them and their families understand their behaviour and responses, but should also help with access to services and support’ and then on page 8 we state that we will ‘ensure schools are aware of the need to maintain support for children and young people in education settings without requiring a diagnosis and ensuring that a diagnosis is not a prerequisite to any form of help and support’. It would be more helpful to establish this earlier on in the Strategy, to ensure that any child or young person who does not meet the threshold for diagnosis is acknowledged within the Strategy.
We need to decide if we include here – ‘We will encourage service planning in one provider (e.g. CAMHS) to take account of current services with a parallel provider (e.g. Community Paediatrics) so a coordinated team approach can operate for diagnosis and intervention’.
We need to explain under the last ‘We will’ bullet point that we are referring to the ‘Royal College of General Practitioners for 2014-17’.
We need to decide if we are going to mention the new assessment wording or do we continue to use the word ‘Asperger’s’, which is now not being used in diagnosis?
3. Supporting access to Health services
There is a need for the following:
We need to make clear that a diagnosis is not a prerequisite to any form of help and support.
This section focuses largely on access and knowledge of health professionals within generic health services. A distinction could be made between this and access to the specialist multi-disciplinary health team (clinical psychologist, occupational therapist, paediatrician, speech and language therapist) who work closely with children and families and have an in-depth knowledge and experience of ASC (which can also be a useful resource to support other professionals).
On page 10, the last ‘We will’ says ‘Ensure that children and young people with autism (0-18) who are eligible for children’s social care, have their social care needs assessed and supported and that parents/carers are appropriately signposted’. This needs to be changed to 0-25, (however children’s social care will only work with young people up to the age of 18, when they will transfer to adult social care if they meet their criteria, although SEN may be involved beyond the age of 18) and we must acknowledge that social care provision is not a health responsibility.
Two respondents have commented that access is not defined - what does it actually mean to have 'access' to health services? We need to define what we mean by this.
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4. Environment
There is a need for the following:
Do we need to acknowledge that Speech and Language Therapists and Occupational Therapists can advise on environmental adjustments?
Do we need to include another ‘We will’ bullet point that identifies that ‘Enabling Environments’ is one of the four main themes in the AET early years autism standards in the Early Years Foundation Stage?
5. Education and Training
There is a need for the following:
Acknowledgement that many children on the Autistic spectrum do not have SEN statements and/or EHC Plans, and it may be difficult to negotiate sufficient help to improve their outcomes, but their needs must not be overlooked.
We need to acknowledge Early Years settings. There should be reference to pre-school as well as school and FE based services throughout the document – we should use the consistent terminology of ‘all education providers’. For example, ‘We will’ bullet point 5 refers only to schools and colleges.
Do we need a specific information sharing protocol so that any relevant information relating to an autistic child can be shared with anyone in education that has direct contact with that child? (This might already be in place?)
Two respondents have highlighted that there needs to be a separate role for employer engagement. We need to identify whose responsibility it is to influence employers and training providers, given the difficulties that autistic young people seeking apprenticeships and employment opportunities face on a regular basis – this is not a role that should just be left to schools/training providers as they may not have the specialist knowledge or time required.
6. Transition
No change needed.
7. Workforce Development
There is a need for the following:
This section appears to relate more to raising awareness and workforce ‘education’ but we may need to also consider how we identify gaps in workforce development.
The first blue box on this page refers to staff in health and social care, but we need to make clear that this also means those working in other disciplines such as education (including Early Years etc.)
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There needs to be consistent training and knowledge across all agencies, with the opportunity to build capacity in families by providing them with training too (i.e. parenting skills/mentoring programmes).
8. Inclusion
There is a need for the following:
We need to mention Child-minders and other childcare providers here, as their role is vital in the early years, but also for older children.
9. Safeguarding
No change needed.
10. Criminal Justice System (CJS)
There is a need for the following:
One respondent has suggested that we emphasise that each child or young person must be treated as an individual, with their ability considered accordingly.
11. Supporting Families
There is a need for the following:
The Local Offer needs to be sufficiently detailed for children and young people and their families to know exactly what levels of service are provided. It could then become a useful tool for users to be able to benchmark availability of services to which they should have access across local areas.
A strong user voice should lead to the development of more responsive services on the ground and this should help to inform effective commissioning.
12. Making it Happen
There is a need for the following:
List of bullet points to be removed. It would be useful to explain the subsequent process of agreeing the action plan, as
part of the conclusion of the Strategy, as many respondents are not aware of what happens next.
It is suggested that we keep the existing Autism Strategy Group, who could agree priorities and implement a Children and Young People’s Autism Strategy Action Plan. This should detail the aims and objectives that they want to achieve, set out how they will achieve them and how they will measure their success. They should also ensure that the action plan is reviewed at least annually. This group will need to meet
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quarterly and will feedback to the Hampshire Autism Partnership Board, who will oversee the implementation of the Strategy across Hampshire.
11. Verbal feedback
Attendees at the focus group that was held at the Speakeasy Advocacy in Basingstoke felt that there were few or no diagnoses as primary level. They also felt that parents have the most information about their children, and indeed, that they know their children better than anyone else, but that their views were often not heard, particularly by the medical profession. They also commented that unless support fell under health, education or social care services, it was entirely informal and could often only be accessed depending on where you live. They also thought that the barrier to accessing services was the way in which services were run, not the provision itself. An example of this was where a child or young person presented with more complex behaviours and did not ‘fit the norm for autism’ and so their needs could not be accommodated due to lack of flexibility.
They also expressed concern about 16-18 year olds who drop out of college/chose not to attend college, but then find that there is little else they can access instead. They may not be able to go onto higher education, gain employment or an apprenticeship and as very vulnerable young people, could become involved in other risk taking behaviour. They felt that this client group was let down as they transition into adulthood. One of the comments from another respondent under ‘Is there anything important missing from Strategy?’ also reflects this:
‘Yes, this strategy talks about young people up to the age of 24 but leaves out the whole area of what happens to these youngsters once they leave education. They still come within the age range of this strategy but as far as I can see there are no support services to help them into employment. Where are the services to:- 1) Teach them the verbal communication skills so necessary at the interview stage. 2) Teach them the basic life skills that even the bright ones struggle with. 3) The supportive employers that might give them a chance knowing they do have great strengths’
It should be noted that some of the comments regarding young people aged 16+ are taken care of in the adult strategy, so all that may be required is a clear link to the relevant section of the adult strategy.
12. Conclusion
It can be concluded that the majority of respondents thought that the Strategy was good. People made very helpful comments highlighting areas of omission and areas for improvement although equally there was also some concern that insufficient resources would be available to implement the Strategy. The valuable comments made by the 79 people who responded will be used to strengthen the final Strategy before its publication in April 2015.
It is suggested that we keep the existing Autism Strategy Group, who could agree priorities and implement a Children and Young People’s Autism Strategy Action Plan. This should detail the aims and objectives that they want to achieve, set out how they will achieve them and how they will measure their success. They should also ensure that the action plan is reviewed at least annually. This group will need to meet quarterly and will feedback to the Hampshire Autism Partnership Board, who will oversee the implementation of the Strategy across Hampshire.
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Appendix A: Public consultation information
Children and Young People’s Autism Strategy Consultation 18 th August 2014 until 7 th November 2014 We have released our final draft of the Hampshire Autism Strategy for Children and Young People and would like to know what you think of it. Your opinions will help us make the strategy better.
Your answers will be confidential, and any words that are underlined are explained at the bottom of the strategy in the glossary. Your answers will be kept by us for two years after the consultation closes.
The survey will also be available in a paper format if you prefer. If you would like to complete a paper survey, please e-mail [email protected] and one will be posted to you with a freepost envelope or you can leave a message on 01962 826714.
Hampshire Autism Strategy for Children and Young PeopleTell us what you think!The Hampshire Autism Board need your help. We want to know your opinion of our new Hampshire Autism Strategy for Children and Young People
Your opinions will help us make the Strategy better
First read our final Draft Hampshire Autism Strategy for Children and Young People. You can ask someone to help you read it. You can ask to have it in Braille or Audio (telephone 01962 826714)
Your answers will be confidential and will not be used for anything else
You may withdraw from this survey at any point if you wish. You do not have to take part and you do not have to complete a question if you feel uncomfortable about answering
Please answer these questions about you:Please tick any that apply
Are you a person with Autism?Are you a carer or parent of a person with Autism?Are you the brother, sister, grandparent or other relative?Are you a person who works with people with autism e.g. support worker, advocate, professional or service provider. If 'yes' please also state what you do
Are you a man (boy) or a woman (girl)?
Please choose one from below
Woman (Girl) Man (Boy)
What is your ethnic group?Please tick the box that best describes you
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WhiteBlackMixed ethnicityAny other (please write here)
AsianChineseI do not want to say
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Will the strategy make life better for children and young people with autism? (Please choose one from below)
Yes No Not Sure
What are the best bits of the Strategy?
What are the worst bits of the Strategy?
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Is there anything important missing from the Strategy?
Please write any other comments about the Strategy
If you would like the report from this consultation please put your name and postal or email address in the box below (it will not be used for anything else)
Name
Email or Postal Address
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Please post us your questionnaire by Friday 7th November 2014 using the pre-paid envelope provided
Here is a Freepost Address in case you don't have
a pre-paid envelope: F.A.O. Heidi RobinsonStrategy and Commissioning Team1st Floor, EII North Hampshire County Council Children's Services Department FREEPOST (SCE11221) WinchesterHampshireSO23 8ZZ
Glossary (An explanation of what words mean)Hampshire Autism Partnership Board - A group of people who are working towards giving children and young people with ASC better support
Hampshire Autism Strategy Part 2 - a plan to improve support for children and young people withASC
Draft - a rough copy of the strategy for people to
look at and comment on Braille - a way for people
who cannot see to read using their fingers Audio -
a way for people who cannot read to listen to the
strategy
Mixed ethnicity - for example, having one parent who is white and one who is not, or one parent who is Black and one Asian
Confidential - This means we will not tell anyone your name if we write in our report some things that you told us. The only reason we would break confidentiality is if you told us that you or someone is at risk of harm. We would discuss this with you first
Consultation - Asking people their opinions
Pre-Paid envelopes - A special envelope which does not need a stamp
Consultation events - A time and place where you can talk to people about the strategy
The information you provide is subject to the terms and conditions of the Data Protection Act 1998
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Appendix C: Children and Young People’s Autism Strategy press release
Hampshire Children’s Autism Strategy – tell us what you think
A new approach to helping children and young people aged 0-25 with autism, is being set out by the Hampshire Children’s Autism Strategy Group and is now out for consultation.
The draft Hampshire Autism Strategy for Children and Young People will run from 2015-2017 and is the second part of a Hampshire lifespan autism strategy. The first part, for adults, was launched by the Hampshire Autism Partnership Board in 2012.
The draft strategy has been developed by a multi-agency partnership including representatives for health, social care, education and the voluntary sector, along with parents of children with autism. It is now being published for a twelve week consultation between 18 August and 7 November.
The strategy, which aims to ensure children and young people with autism have the appropriate support and opportunities to lead fulfilling and rewarding lives, can be viewed online at hants.gov.uk/autism-consultation.
It is estimated that more than half a million people in the UK have autism, with around 4,000 children and young people aged 0-25 living with autism in Hampshire. The new strategy places those individuals, their families and carers, at the centre of planned improvements to service delivery.
The strategy aims to: improve autism awareness amongst those working with children and young people, including in education or health services, to make sure the individual needs of children and young people with autism are being met; ensure young people with autism are supported to access education, employment and training, and ensure they are supported as they move through education and into adulthood.
Councillor Keith Mans, Executive Lead Member for Children’s Services, said: “Autism is a lifelong developmental disability that can affect the way a person communicates with, and relates to, the world around them. Early recognition and interventions throughout childhood can have a significant bearing on how a child or young person with autism transitions into adult life.
“We have a responsibility to ensure the welfare of vulnerable young people in our community. I would urge anybody caring for or working with children and young people with autism, and the young people themselves, to share their views during this consultation so that we can continue to provide services that meet the needs of those living with autism in Hampshire.”
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The Hampshire Autism Strategy for Children and Young People will take forward the Council’s commitment to meet requirements of the Autism Act 2009 and the National Autism Strategy of 2010 and it is expected that the finalised strategy will be launched in February 2015.
Paper copies of the strategy, or alternative formats such as Braille and audio, can be obtained by telephoning 01962 826714 or e-mailing [email protected].
Appendix D: Flyer that was widely circulated to generate interest in a focus group event
The Hampshire Autism Partnership Board need your help!
We want to know your opinion of our new Hampshire Autism Strategy for Children and Young People. Your opinions will help us make the Strategy better.
We will shortly release our final draft Hampshire Autism Strategy for Children and Young People, and we will also release a summary of the final draft strategy for anyone who doesn’t want to read through the whole document. Your answers will be confidential, and any words that are underlined are explained at the bottom of the strategy in the glossary. Your answers will be kept by us for two years after the consultation closes.
There will be a dedicated website, with details of the consultation, and a link to the online survey, but the survey will also be available in a paper format if you prefer. The consultation period will be from Monday 18th August until and including Friday 31st October 2014.
We will also be running a series of focus groups from the beginning of September, with autistic young people and their parents and/or carers. These groups will be community based, not held during school hours, and will be an opportunity for people to give their feedback in small groups of 4-6 people. They will last for approximately an hour and fruit and squash will be provided at these events. If you would like to participate in the focus groups, please let your Outreach Officer know and they will tell you where and when these will be happening.
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Appendix E: Flyer for a young people’s group where we facilitated a focus group
