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Know you Rights Campaign!

8th April 2019

Autism Alliance Campaign

Autistic people make up about 1% of the population. Autism affects the way that people communicate and interact with the world. Autism is a spectrum that impacts on everybody differently and can be very complex. The Autism and Care Acts were ground-breaking pieces of legislation, designed to ensure the needs of autistic people and their families were met. It enshrined in law that every autistic adult has the right to a needs assessment which must take in to account their autism, carried out by a trained individual with the skills, competency and knowledge to determine the support required.

The evidence of a new national survey from the Autism Alliance paints a troubling picture; 80% of autistic people told us that they needed more information on their rights. Two thirds of Local Authorities told us they were not using autism specific assessment tools. 75% of Local Authorities offered their staff less than a day’s training on autism – you cannot understand the complex nature of autism and how it presents across the spectrum in single day.

The Autism Alliance is launching a campaign to support autistic people to – Know Your Rights – launching on 4th April with a meeting of autistic people, families and carers, as well as representatives from Mencap and the NAS, at the Central Hall Westminster. The meeting will follow on the heels of the annual Autism Accountability Meeting the previous day.

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

On 4th April –– we want to create a national 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.

Without proper assessment, autistic people run the risk of not receiving the support they require to have a fulfilled life, living as independently as possible. Without appropriate support the risk of people tipping into crisis is greatly increased. Autistic people are amongst the largest group currently residing in secure hospitals (we believe over half) which has been the focus of the national Transforming Care Programme.

The respondents to the Alliance Survey portray a system which is repeatedly failing to meet the rights of autistic individuals:

“Lost in the whole process, family have to fight to get any help at all. It’s not easy.”

“It is very hard to get a Care Assessment. If you get one, it’s seen as a way of monitoring direct payments rather than focusing on outcomes. I have had assessors who couldn’t spell ‘autism’ let alone understand the needs of my son.”

“More about saving money than meeting needs. Assessor hadn’t a clue about autism. Rushed as assessor had lots of people to assess. I felt like they wanted to cut money and wouldn’t listen to important things that would stop them cutting money”

“Not had an assessment for some time. The last one I had was by someone I had never met before, who I believed specialised in elderly care.”

“I have a direct payment and cannot spend it. I feel useless because there are no services who want my direct payment. I feel services hear the word autism and reject me. I feel a failure because I cannot spend my direct payment.”

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.

Mary Simpson, CEO of Spectrum commented: ‘we see the daily impact on autistic people and their families when the Care Needs Assessment does not reflect the support that they need. A lack of support can force people into mental health services or long stay hospital admissions which we know is not right for autistic people.’

Jane Howson, Chair of the Autism Alliance commented: ‘We recognise Local Authorities are experiencing unprecedented funding pressures, but by not effectively assessing and meeting needs it is forcing autistic people into crisis, both costing more in the long run and impacting hugely on quality of life for those individuals.’

Find out more here: https://consultations.dh.gov.uk/autism/2e4ae18d/consultation/intro/

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