Your views are needed

1. Consultation on the draft statutory guidance to implementthe strategy for adults with autism in England Your views are needed

2. Chairperson XXX

3. Agenda Time • All timings are approximate • Welcome and introductions [enter timing: allow 5-10 mins] • Background [enter timing: allow 5-10 mins] • Group discussions [enter timing: depending on time • available if you want to cover all the sections you will probably • need at least 2 hours allowing 10-15 mins per topic. You • may need more time than this. • You do not have to cover every section. You may wish to • merge some of them or have different groups talk • about different issues] . • Feedback, conclusions and next steps [enter timing: • allow approx 5-10 mins]

4. Agenda – example

5. Guidelines for discussions • There are no right or wrong answers • Everybody’s views are equally important • We let each other speak and don’t interrupt • Take a break when you need one (there will also be a break at xxxx) • Please turn your mobile phone off or onto silent • Emergency procedures

6. What does statutory guidance do? • Tells local authorities and health bodies what they should • be doing for people with autism. • It is not the law, but local authorities and health bodies have • to show a good reason not to follow it. • If there is not a good reason to not follow the guidance, • you might be able to go to court (this is called judicial review).

7. What is today for? • The Autism Act 2009 requires the Government to do two important things: • produce (and review) an adult autism strategy for England; and • produce (and review) statutory guidance for local authorities and NHS Trusts. • The strategy was refreshed in April 2014 – Think Autism. • Now, the statutory guidance is being updated, to reflect • Think Autism to tell local authorities and NHS bodies what • they should be doing. • To make sure that the final statutory guidance works well • for people with autism, we would like your views on the • draft statutory guidance. • The [name of organisation/event] will use these to • respond to the consultation.

8. Background - Think Autism • Was published on 2nd April, in line with duties under the • Autism Act 2009, and following the review led by the • Department of Health into progress in relation to the 2010 • Adult Autism Strategy. • The strategy is found at : • https://www.gov.uk/government/publications/think-autism-an-update-to-the-government-adult-autism-strategy

9. Think Autism sets out a clear programme • What the Department of Health and other Government • Departments will be doing to improve the lives of people with Autism. • Actions that will support local authorities, the NHS and their local partners with their local implementation work.

10. What is in the draft guidance? • Training of staff who provide services to adults with autism; • Identification and diagnosis of autism in adults, leading to assessment of needs for relevant services; • Planning in relation to the provision of services to people with autism as they move from being children to adults; • Local planning and leadership in relation to the provision of services for adults with autism; • Preventative support and safeguarding in line with the Care Act 2014; • Reasonable adjustments; • Supporting people with complex needs; • Employment for adults with autism; • Working with the criminal justice system;

11. What is meant by…? • You might hear the following words used in this meeting: • Local authority • Your council and social services • Health body • Hospitals • CCGs and your doctor • Diagnosis/diagnostic pathway • Finding out you have autism • The process to find out you have autism • Care and support • The support you get from social services for day-to-day things at home • Community care assessment or needs assessment • The test to find out what care and support you need • Transition • Moving from children’s services to adult services

12. What we will do today • The Department of Health have written some questions about different parts of the statutory guidance. • We will go through the sections in order. • You can answer the questions directly, or you can • explain other things that you think are important about • that section. • You can also write your own response if you want to. There • are answer books to do this.

13. Section 1: Staff training The draft statutory guidance says autism awareness training should be available for all staff in health and care (in local authorities and health bodies). Staff that have an impact on people’s lives or make decisions about them should have “adequate training specifically in autism”. • Questions: • Do you think that this section of the guidance explains the responsibilities that local authorities and health bodies have around training for staff? • If not, what changes would you propose? • Is there anything else to add that would make a difference? • Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on training?

14. Section 2: Getting an autism diagnosis • Questions: • Do you think that this section of the guidance explains the responsibilities that local authorities and health bodies have for adults with autism around diagnosis? • If not, what changes would you propose? • Is there anything else to add that would make a difference? • Do you think this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on diagnosis? The draft statutory guidance says that health bodies should have a diagnostic pathway, which follows best practice (e.g. beginning your assessment within 3 months of being referred by your GP). Health bodies should have a lead person who develops and maintains the diagnostic pathway.

15. Section 3: Moving from children’s services to adult services • Questions: • Do you think that this section of the guidance explains the responsibilities that local authorities have around transition from child to adult services for young people with autism? • If not, what changes would you propose? • Is there anything else to add that would make a difference? • Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on transition? The draft statutory guidance says that local authorities must create a “local offer” of transition services that young people can choose from. If a young person has an education health and care plan (like a statement), from Year 9 it must include preparing for adulthood (e.g. employment, independent living). They must also consider what adult services a young person might need.

16. Section 4: Planning the right services The draft statutory guidance says there should be a group that brings together organisations to improve services (a Autism Partnership Board). There should be an Autism Lead in the local authority, to oversee the right services. Local authorities and health bodies should work together to make sure they know how many people with autism there are in their area (this is often called a Joint Strategic Needs Assessment). They should create plans for services based on this. • Questions: • Do you think that this section of the guidance explains the responsibilities that local authorities and health bodies have around planning for the provision of services for of adults with autism? • If not what changes would you propose? • Is there anything else to add that would make a difference? • Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on service planning?

17. Section 5: Getting the right care and support The draft statutory guidance says that people should be offered a needs assessment when they get an autism diagnosis if they might have a need for care and support. The local authority should let people know that they can have a needs assessment. The local authority also must conduct a needs assessment where it appears that a person may need care and support. Once a person has a needs assessment and they have needs, the local authority must meet them. • Questions: • Do you think that this section of the guidance explains the responsibilities that local authorities and health bodies have around giving the right care and support? • If not, what changes would you propose? • Is there anything else to add that would make a difference? • Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on this section?

18. Section 6: Reasonable adjustments to services The draft statutory guidance says that under the Equality Act 2010 all public sector organisations, including employers and providers of services, are required to make reasonable adjustments to services to ensure they are accessible to disabled people, including people with autism. Putting in place reasonable adjustments can ensure that adults with autism are able to benefit fully from mainstream public services to live independently and healthily. • Questions: • Do you think that this section of the guidance explains sufficiently the responsibilities that local authorities, health bodies and NHS Foundation Trusts have around making reasonable adjustments for people with autism? • If not what changes would you propose? • Is there anything else to add that would make a difference? • Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on reasonable adjustments that would be helpful?

19. Section 7:Supporting people with complexneeds, whose behaviour may challenge or may lack capacity • Questions: • Do you think that this section of the guidance explains the responsibilities that local authorities and health bodies have around giving the right support to people with complex needs? • If not, what changes would you propose? • Is there anything else to add that would make a difference? • Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on this section that would be helpful? The draft statutory guidance says that local authorities and heath bodies should work in partnership to ensure there is a substantial reduction in reliance on inpatient care for people with autism and learning disabilities and complex needs. This requires personalised care planning, the provision of alternative community based settings, crisis intervention and support and access to independent advocacy.

20. Section 8: Getting a job This area is quite complicated, as it does not mean getting benefits through things like Employment and Support Allowance. The draft statutory guidance says local authorities should include employment support needs when it is planning what services to have. They should ask people with autism what might make it harder for them to find or have a job and ensure that the Jobcentre is on their Autism Partnership Board. • Questions: • Do you think that this section of the guidance explains the responsibilities that local authorities should consider around employment support? • If not, what changes would you propose? • Is there anything else to add that would make a difference? • Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on this section?

21. Section 9: Working with the criminal justice system This guidance does not apply to the criminal justice system agencies; it applies to local authorities and health bodies in their role to work with and support these agencies. Local authorities and health bodies should work with the criminal justice system agencies so that they are aware of the challenges experienced by people with autism needing access to support whether they are a victim, or witness, or are suspected of committing a crime. • Questions: • Do you think that this section of the guidance explains sufficiently the responsibilities that local authorities and health bodies should undertake in their role to work with criminal justice agencies? • If not what changes would you propose? • Is there anything else to add that would make a difference? • Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers? • Do you have any other comments on working with the criminal justice system that would be helpful?

22. What happens next? • Thank you very much for sharing your views with us today! • We will take your comments and use them to • write our consultation response to the Department of Health. • We might use some quotes of what you have said today. • Please let us know if you do not want your comments included. • We can make the comments anonymous if you like. • The consultation finishes on 19 December 2014. • The final statutory guidance will be published early in 2015.

23. How to send your own response • You will can respond to the consultation in the following ways: Post or emailing your completed answer booklet back to the Department of Health. • In writing to: Consultations Coordinator Adult Autism Statutory Guidance Review Consultation Department of Health 313A Richmond House 79 Whitehall London SW1A 2NS • By email to: autism@dh.gsi.gov.uk • Online at: http://consultation.dh.gov.uk/

24. Any questions? • Do you have any questions about what we have • discussed today? • Do you have anything else you want to tell the Department • of Health about the draft statutory guidance? • If you think of a question later, you can contact xxxx: • Email: xxxx • Telephone:xxxx • Address: xxxx