“Hello, I’m Anna I have a severe form autism, I’m 20, I’m too old for schooling and unlikely to be able to go to work, I feel vulnerable and the world is often overwhelming. No one seems to hear me when I tell them what I want tomorrow…”
While Anna is a fictional creation for this blog, she is not alone. A rough estimate for the number of people in Europe living with autism, of a severity requiring help and support, might settle on a figure around 2.5 million (although the exact number is unknown). While all EU countries are on a journey of developing healthy attitudes and effective services…some have further to travel.
Hao2.eu Foundation
According to the Hao2.eu Foundation which campaigns of individuals with autism;
“While the ‘postcode lottery’ for some UK government services is a source of frustration to many, we should spare a thought for the differences in treatment for people with autism across the EU…life chances vary wildly depending on one’s country of residence.”
They note – Autism Europe’s recent research highlighting that only 5 EU countries (Bulgaria, Denmark, France, Hungary the UK) have comprehensive autism plans in place. In Wales we have pioneered creative life-pathways for individuals with learning disabilities which saw the move towards community integration and away from impersonal institutional care.
Back to the Future
In 1983 the Welsh Office published the ’All Wales Strategy’ the aim of which was to
“…enable people with learning disabilities to enjoy the full range of life opportunities and choices, to have positive identities and roles in their families and communities, to exercise choice and to develop independence, self-respect and self-fulfilment.”
The effect of this strategy over more than 30 years has been inspirational, transformative and life-changing. Many people have received care and support which has enabled them to live with greater levels of independence, respect and fulfilment than was previously possible.
The Social Services and Well-being (Wales) Act, 2014
So…where next and how does the new Well-being Act sit within this learning disability background?
Perhaps of key significance here will be a number of principles and measures in the Act.
- The Act is ambitious in its vision for individuals moving towards independence through enablement, training and vocational support.
- Control – each service user will be responsible for setting the ‘direction of travel’ for their support plan.
- Arrangements for personal budgets will enable more service users to ‘shop-around’ for services which best meet their exact personal goals and requirements.
- Coordinated joint-working is mandated in the Act so that care and support is delivered across the individual’s whole range of need by the most appropriate service.
- For example specialist input might be required for substance misuse as well as the previously identified learning disability. Joint-working will be subject to oversight and inspection.
- Safeguarding measures are strengthened and enshrined in new responsibilities to report suspicions and are overseen by regional boards.
What I didn’t tell you at the beginning of this blog is that my fictional character ‘Anna’, possesses enhanced mathematical ability. If she can receive the right kind of support today, then this innate ability may play a big part of fulfilling her tomorrow…