1. Statutory guidance to implement strategy for adults with autism in England consultation The Department of Health is asking for views on their draft statutory guidance – you can have your say!

2. Agenda TimeActivity 10.00 amWelcome and introductions 10.10 amBackground to the statutory guidance 10.30 amDiscussion 11.00 amBreak 11.15 amDiscussion on the remaining sections 12.25 pmWrap up and explain next steps 12.30 pmFinish

3. What does statutory guidance do? Tells local authorities and health bodies what they should be doing for people with autism. It covers: –Autism awareness training for staff –Diagnosis –Care and support (including transition) –Planning autism services (making sure the right services are available) –Employment 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).

4. 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 NAS will use these to respond to the consultation. We would also like to hear your experiences of getting a diagnosis and care & support from the last few years.

5. Guidelines for our discussion 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 11.00am) Please turn your mobile phone off or onto silent Emergency procedures

6. 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

7. What we will do today We 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.

8. Staff training Questions Do people who work in health or care and support know what autism is? –Doctors and other NHS workers –Community care assessors –Care workers/support workers Do these people know how to change the way they communicate, behave or provide services for people who have autism? We call these “reasonable adjustments”. List the people that you think should have: basic autism awareness training; specific training; and autism expertise. Have you been involved in developing or delivering autism training to any of these people in your area? 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”.

9. Getting an autism diagnosis Questions: Is it clear in your area how people can get an autism diagnosis? Is there a ‘pathway’ to diagnosis? How long did you wait between being referred for assessment, and being assessed for an autism 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.

10. Getting the right care and support Questions If you were diagnosed with autism as an adult, were you told about getting an assessment for care and support (“needs assessment”)? Or a carer’s assessment? Did you have to ask for a needs assessment? How many times did you ask? If you had to ask for a needs assessment, was the assessment done quickly? Did your needs assessment result in good support? Were you offered or told about low level services like befriending or support groups? 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.

11. Moving from children’s services to adult services Questions Do you agree that education health and care plans should be reviewed, from Year 9 onwards? Is it important to plan for a young person with autism’s transition to adult services? Why? What did local authorities and schools do to support you through transition? What other things would be useful to help young people into adulthood? 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.

12. Planning the right services in your area Questions Does your area have an Autism Partnership Board? This is a group that includes health and care services, local authorities and people with autism. Does your area have something similar? Are you a member of your Autism Partnership Board? Do you go to meetings? Are they useful? Do you feel like your views are considered? If you don’t have a Partnership Board, are there ways that you can give your views about local services? What other ways would you like to give your views? The draft statutory guidance says there should be a group that brings together organisations to improve services (an 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.

13. Getting a job Questions If you are part of your Autism Partnership Board, do you know if the Jobcentre is a member? Are any local employers members? Has your local authority asked you about what things might make it harder for you to get a job? If you had a needs assessment, did it consider employment and what support you might need to get a job? Does your local authority promote jobs or apprenticeships where the employers are autism aware? 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.

14. 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. You can write your own response if you want to. There are answer books here today – please take one. The final statutory guidance will be published early in 2015.

15. How to send your own response You will can respond to the consultation in the following ways: 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.ukautism@dh.gsi.gov.uk Online at: http://consultation.dh.gov.uk/http://consultation.dh.gov.uk/

16. Any questions? Do you have any questions about what we have discussed today? If you think of a question later, you can contact Tim Nicholls: –Email: tim.nicholls@nas.org.uktim.nicholls@nas.org.uk –Telephone: 0207 923 5771 –Address: The National Autistic Society, 393 City Road, London, EC1V 1NG