Whether you are a carer, a social worker, someone with autism, a friend or relative of someone with autism, a GP, an employer, a clinician, a care worker, a community outreach worker, or someone with a hidden impairment associated with the autistic spectrum, we want to hear from you.
The Department of Health is leading a cross-government review of the 2010 adult autism strategy, ‘Fulfilling and Rewarding Lives’, and is looking for people to give their views about how they think the strategy is working so far.
The adult autism strategy aims to improve the lives of adults with autism and has 5 areas for action:
- increasing awareness and understanding of autism
- developing clear and consistent pathways for autism diagnosis
- improving access to services and support for adults with autism
- helping adults with autism into work
- enabling local partners to develop services for people with autism
The work is not just about putting in place statutory autism services but about creating equal opportunities for people with autism, by awareness raising, training and making reasonable adjustments to everyday services.
We want to have a good look at the progress local authorities, health and wellbeing boards and the NHS is making in improving the lives of people with autism in their communities and check whether the objectives of the strategy are still fundamentally the right ones.
Autism Plus, National Autistic Society (NAS) and Autism Alliance are all supporting the review and helping us make sure there are a range of opportunities to hear people’s voices. The NAS is also running its Push for Action campaign, for better support for adults with autism, to coincide with the review. We are also asking local authorities and their partners to assess the progress they are making.
We will publish a report about our findings before the end of the year and then the revised strategy by March 2014.
I’d really like to hear about your thoughts and experiences. You can email your opinions to autism@dh.gsi.gov.uk, leave a comment here or send me a tweet @RouseJonDGDH.
If you are on the autism spectrum, you can also take part in the review by doing a short online survey before 6 September 2013.
6 comments
Comment by Eileen Futter posted on
I'm a single mum with a 16-year-old son with autism. I home educate him and he's very happy in this environment. What he needs to help him progress further is more funding to pay for more people to join our home programme team - he needs 24 - 7 help with his complex needs but he loves interacting with new friends and doing new things. He also needs a space adapted for his needs eg incontinence so a ground floor bedroom with ensuite bathroom for starters. Changes in diet have vastly improved his condition but it's expensive buying good quality organic food and high end supplements - this should be funded too. Professionals like social workers, LEA officials, ed psychs, doctors and nurses largely treat parents of autistic children as idiots They need to listen to what we know. Many also treat us with suspicion, assuming the worst of us - especially if we home educate our children. For parents, a child with autism is full-on 24-7, 52 weeks of the year hard work but in the right environment they're also beautiful, happy, loving people who make progress. Parents need to listened to and given enough support to help their disabled children and allow themselves and their other children to lead normal lives.
Comment by Jon Rouse posted on
Thank you for responding to my recent blog on the Review of the Autism Strategy. I read your response with interest, and clearly, we would always expect all patients and parents to be treated with respect and courtesy. Moreover, it is essential that clinicians and professionals recognise the essential role that the parents of children with complex conditions can play as experts on their child’s needs, a vital source of information to help determine the best package of care.
New arrangements for assessing and commissioning services for children with special educational needs (set out in the Children and Families Bill currently in Parliament) are being piloted around the country by Pathfinder local authorities working with Clinical Commissioning Groups. At the heart of these arrangements is a process by which a multi-professional team work with the child or young person, and their parents and carers, to identify the outcomes which will make the biggest difference to the child in terms of their development and daily living, and develop an Education, Health and Care plan to deliver them. This process enshrines the principles of integrated care co-ordinated around the child, listening to parents, and also provides a basis for a shared understanding across the relevant local services of the child’s needs, and a shared agreement of how best to meet them within the resources available.
Comment by Claire le Feuvre posted on
I started to fill in your survey but gave up as it is just not relevant in the main to my situation or to the situation of the many young people I know. I am the parent of a 20 year old son who was diagnosed at the age of 2. I was also on the local Strategy Implementation Group for about a year. Unfortunately it seems that the survey like implementation groups focus on "high functioning" people who have not yet got a diagnosis or who were diagnosed as teenagers/adults. There is a a mistaken assumption that other autistic people (ie those generally diagnosed younger and/or catagorised under learning disabilities) already have a good service delivered through learning disabilities services. In other words the autism strategy implementation focus has been on filling perceived gaps in service. The perception being that certain people - mainly hfa and often undiagnosed - are the "gap" that needs filling. In reality the gap that needs filling is actually providing services that actually address autism and its co-occurring conditions - medical issues like gut problems/"mental health" issues like anxiety, ocd/communication disorders/sensory issues that impact vestibular, proprioceptive, visual and auditory functioning and thus affect every aspect of living and learning. (For more information see http://issuu.com/treatingautism/docs/medical_comorbidities_in_autism_spectrum_disorders
These issues can be tackled through medical interventions/nutrition/neurodevelopmental programmes etc. They impact everyone with autism to different degrees - whether they are classified as learning disabilities/mental health/other service users. The Autism Strategy Implementation should have been about developing an integrated autism service for everyone who has autism/related neurodevelopmental conditions and should have put in place services to address the issues outlined above.
Comment by Nigel posted on
We are a provider of services supporting individuals with Autism and have been campaigning for years about having a structured pathway to develop skills and understanding around this subject, we know have a working group – mix of employers, Service users, universities, awarding bodies and Skills for Care working on developing a range of qualifications around this subject.
It would be good practice to link this development alongside the review and findings?
Comment by David McAsey posted on
People with ASD are being discriminated against by Health and Wellbeing Boards that fail to recognise the needs of people with ASD in their Joint Health and Wellbeing Strategies even though their needs have been identified in Joint Strategic Needs Assessments.
People with ASD have 'joined up' needs that require a very broad spectrum of 'joined up' solutions. Implementation of Fulfilling and Rewarding Lives should be used as a marker for the extent to which a local area is able to plan and deliver 'joined up' services.
Health and Wellbeing Boards can and should be taking leadership by supporting Autism Partnership Boards, demanding the publication of Autism Strategy implementation plans by no later than Sept 2013 and holding all service providers to account for delivery of their part of the plan.
Comment by Philip. Bannister posted on
The escalation of service models offering participative pathways is essential to addressing the needs of diagnosis and care planning for children with ASC.
For adults ' whole life approaches with a extensive range of choice based provision around employment , housing and social interaction based on maximising access is a positive way forward. That provision Could only probably be obtained by having a diverse market provision for individuals to select from . There is a Key question for commissioning which is the need to stimulate the market by offering Five year funding to enable small cooperative , CIC and social enterprise solutions to organisations to develop provision models .