Sarah Lambert, Head of Policy at The National Autistic Society (NAS) and co-writer of the 50th birthday report: â€˜The Way We Are: Autism in 2012â€™.
To mark our 50th birthday, The National Autistic Society commissioned the largest ever survey into autism, in order to show what life is like in the UK for people affected by the condition.Â Covering the wide range of autism experiences from diagnosis and employment to school and independent living, the surveyÂ informed a major new report from the charity,Â â€˜The Way We Are: Autism in 2012â€™.
Some of the report makes for important if difficult reading and arguably the most sobering chapter in the report is that which looks at the experiences of those who care for someone with autism.
There is no denying that caring for someone with autism is not always an easy task and the pressures on carers are many.
Carersâ€™ legislation and national policies have given rights and entitlements to those who care for a long time. The Autism Act statutory guidance clearly states that post diagnosis a carer should be informed of their right to a carersâ€™ assessment. Following an assessment, those who provide a substantial amount of care on a regular basis should receive help either for them or for the person that they care for.
The type of help carers can receive can vary. Some have received direct payments which have allows the whole family to have a weekend away. Others have been given help to pay for transport, telecommunications and computers.
So far, so sensible.
And yet, 80% of the 5503 carers who took part our survey told us that they have never had their needs assessed.Â And a further 74% reported that they donâ€™t receive any support for being a carer.
The human effects of this lack of support are real and worrying.
For many, lack of support has led to anxiety (81%), depression (64%) and isolation (70%), with 61% feeling a strain on their marriage. Over half reported a negative impact on household finances and a third of carers under 40 told us that theyâ€™d like to work but canâ€™t because of their role as a carer. Many more have had to give up work, reduce hours, work part-time or take a lower paid job in order to care for someone with autism. This isnâ€™t good for the carer or for the economy.
Our research has been backed-up by Contact a Family who have unearthed even graver statistics: in their survey 14% of families caring for disabled children are going without food and 17% canâ€™t afford to heat their homes. Whatâ€™s more, 58% of the 2,300 families interviewed fear their financial situation will worsen in the next year â€“ up 15% since 2010.
On top of this, the cuts to local authority budgets are also starting to bite with valuable services being hit and putting families under pressure.
The NAS and other organisations are doing all we can to support people who care in these challenging times. Indeed, for decades we have provided a wide range of services and support for families and carers including a network of volunteer run branches providing invaluable support and services locally.
But we canâ€™t do everything and we are not being helped by a social care system that is in crisis. With every passing day we are seeing more and more people going without adequate support and we are still waiting for the Government to take decisive action.
All in all itâ€™s a troubling picture, but there is a consensus on what needs to happen.
Firstly, one of the biggest problems â€“ and one of the easier issues to solve â€“ is that there is a complete lack of good quality advice and information about the support services available at a local level. Many carers have told us that having a single point of contact for information and support would be enormously valuable as would readily accessible help and information on how to apply for benefits and short breaks, which essentially means respite care for a short period of time that allows the carer to have a break.
The second vital step must be to simplify the law so that it works for, and not against, families. What must happen is that we must replace the complex web of laws that currently exist with one single law, one set of regulations and a code of practice covering all areas of social care. All of these have been recommended by the Law Commission and so there is a clear blueprint on how it can be done.
Finally, what we need is for the political parties to come together and form a consensus on how these reforms will be funded. Last year a commission â€“ chaired by a well respected economist Andrew Dilnot â€“ gave detailed recommendations on how to fund reforms and it is vital that our political leaders grapple with the funding issues and work together to end the care crisis.
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