10th Anniversary Autism Act 2009 Know Your Rights and #Act4Autism Campaigns Emma Reade CEO Autism Bedfordshire Emma.reade@autismbeds.org

10th Anniversary of the Autism Act The Autism Act 2009 did two key things: 1)Put a duty on the Government to meet the needs of autistic adults in England. By pointing out the duty to prepare and publish an autism strategy for the improvement in delivery of services to autistic adults from; local authorities and the National Health Service by 1st April 2010 and to review this strategy every 5 years. Autism Act: The Autism Act 2009 was a ground-breaking piece of legislation designed to ensure the needs of autistic people and their families were met.

10th Anniversary of the Autism Act 2009 2)Put a duty on the Government to produce statutory guidance for local authorities to implement the strategy locally and lists 7 points to be included in the Fulfilling and Rewarding Lives (2010) guidance which concern: diagnosis of autistic adults identification autistic adults providing assessment of needs for autistic adults to access services planning for transition between child and adult services planning provision of other services to autistic adults providing training on autism for staff providing these services local arrangements for leadership in relation to the provision of services to adults with such conditions

“ now the next step will be to translate the strategy into decisive action at a local level – this momentous opportunity to transform the lives of people with autism and their families must not be wasted.” Mark Lever CEO of the National Autistic Society 2009 This legislation matters, the Autism Act is there to support, protect and empower people

10th Anniversary of the Autism Act 2009 What has worked well across Bedfordshire? Diagnosis Service Training professionals 2010 - 2015 3. Think Autism Partnership Board (TAPB) Adult Autism Service based in Clapham – previously people would have to navigate their way to SLAM, many told us that this was challenging. The diagnostic service is a huge success and strength has been the establishing this service and the high quality/low wait time is highly effective – for example, in neighbouring authorities the wait time for a diagnosis can be 2 years and in Bedfordshire, its 12 weeks. Training: initially the 3 local authorities invested in high quality training; co-constructed and co-delivered with autistic adults or as the act states ‘experts by experience’. Think Autism Partnership Board (TAPB): following on from the 7th point above, the quarterly TAPB partnership board to discuss priorities and challenges relating to the local autism agenda. The membership of the group is made up of local providers and local services, local autistic residents and carers of autistic people, 3 local Councils and Health.  The partnership board covers the whole of Bedfordshire and is organised by Autism Bedfordshire in partnership with Central Bedfordshire Council, Bedford Borough Council, Luton Borough Council, and the Bedfordshire Clinical Commissioning Group.

10th Anniversary of the Autism Act 2009 What has not worked well and needs to change across Bedfordshire? Housing Strategy: The Act and Rewarding and Fulfilling lives detailed that local housing strategies are to specifically name autism/the needs of autistic people. Joint Working between Social and Health: meaningful joined up working/systems, so that autistic adults do not fall between budgets and that processes actually meet autistic adult’s needs. Training: invest in high quality training; co-constructed and co-delivered with autistic adults or as the act states ‘experts by experience’. Housing Strategy: The Act and Rewarding and Fulfilling lives detailed that local housing strategies are to specifically name autism/the needs of autistic people. Joint Working between Social and Health: meaningful joined up working/systems, so that autistic adults do not fall between budgets and that processes actually meet autistic adult’s needs. Greater commitment is needed. Training: invest in high quality training; co-constructed and co-delivered with autistic adults or as the act states ‘experts by experience’.

Know Your Rights This legislation matters, the Autism Act is there to support, protect and empower people

Know Your Rights a message from the chair of the autism alliance , jane howson The Autism Alliance are concerned that Community Care Assessments are being carried out by people lacking the expertise to undertake such assessments and using tools that are inappropriate. Only 24% of Local Authorities told us that they provided training of a day or more in length. In addition 77% of Local Authorities also told us the tools they used to assess need were not autism specific. Recent survey paints and worrying picture. Lacking Expertise: Autism is a complex and diverse condition and expertise cannot be gained in a single days training – lacking expertise Not autism specific tools: This often results in people being denied the support they really need and are entitled to, ending in crisis and a negative impact on the individual, their support network and public sector budgets.

Know Your Rights The National survey of autistic people and their families/carers told us that: 76% of people only met their assessor on the day of the assessment 80% did not receive a copy of the paperwork in advance Only 2% of people were offered an advocate (42% felt they needed one) A shocking 45% of people were not able to invite people who were important to them 80% of people felt they needed to know more about their rights. The law is very clear and we, as part of the Autism Alliance have developed tools for both local authorities and autistic people and their families/carers, to help them ensure that assessments are following the law. We launched the Know Your Rights Campaign in central London on 4th April, the aim is to start a national and local conversation to ensure that autistic people know their rights and that local authorities ensure their staff are informed about the legal obligations to them. Every autistic adult in the UK has the right to: Have a care needs assessment that is autism specific Undertaken by an assessor with the skills, competency and knowledge of autism sufficient to undertake that assessment

Know Your Rights https://www.autism-alliance.org.uk/act4autism/ Every autistic adult in the UK has the right to: Have a care needs assessment that is autism specific Undertaken by an assessor with the skills, competency and knowledge of autism sufficient to undertake that assessment Every autistic adult in the UK has the right to: Have a care needs assessment that is autism specific Undertaken by an assessor with the skills, competency and knowledge of autism sufficient to undertake that assessment

Know Your Rights Table Top Discussions and Packs Complete Slide

Know Your Rights https://www.autism-alliance.org.uk/act4autism/ Properly applied, the Autism and Care Acts have the capacity to change lives; ensuring that autistic people and their families can live fulfilled and independent lives. Video to go out on Properly applied, the Autism and Care Acts have the capacity to change lives; ensuring that autistic people and their families can live fulfilled and independent lives.

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