Vulnerable Adults with Autism Require Greater Protection
Simpson Millar ended Carers Week on a high as we joined over 7,000 people at the Autism Showin London. We were privileged to speak to lots of adults and young people with autism, or conditions on the autism spectrum along with their families and carers, providing legal clinics on issues that may affect them.
It was therefore depressing to start this week reading the results of a new survey by the National Autistic Society (NAS)
which shows the continuing high levels of abuse, neglect and loneliness suffered by autistic adults.
Whilst many adults with autism are able to live independently, some are reliant on others for care and support to stay safe and healthy. At Simpson Millar we regularly meet passionate advocates and dedicated carers for people with autism. We also regularly receive calls from family members, friends and professionals who are trying their best to care for an autistic adult but are feeling let down by the system as they battle with social services, health and mental health services to get the right information and support. In these circumstances we are able to help families navigate their way through the system and, if necessary, challenge any public bodies not fulfilling their statutory duties.
Unfortunately not everybody has someone to look out for them. There are insufficient resources and protections in place to ensure the needs of such vulnerable adults are quickly and correctly identified, and that the right support is put in place. This leaves some autistic adults at risk of manipulation, abuse, neglect and loneliness, as highlighted in the recent survey. It is shocking to read that nearly half of autistic adults have been abused by someone they regarded as a friend
. Urgent steps are required to ensure this cannot happen.
Care Act 2014 and Regulations
The current adult care system is on the brink of major change. After many months of debate the Care Act received Royal Assent on the 14th of May 2014 and most of the Act is due to be implemented in April 2015. The Care Act sets out the key responsibilities of local authorities around the provision of information and advice, well-being, assessments, universal services, direct payments, diversity and quality of provision and joined-up working with relevant partners e.g. NHS to promote integrated care and support.
The Act brings those funding their own care into the care system, extending the obligations on local authorities towards people who self-fund their care. It sets out a new model of paying for care, putting in place a cap on the care costs for which an individual is liable.
Importantly, the Act strengthens the rights and recognition of carers in the social care system, including, for the first time, giving carers a clear right to receive services. The Care Act covers adult social care in England only. The Children and Families Act 2014
(which is due to come into force in September 2014)
includes new duties around education, health and social care for children and young people and for the assessment of young carers and parent carers of children under 18.
The Care Act provided a long overdue opportunity to address many of the gaps and failings in the current adult care system which has long been recognised to be overly complex and 'labyrinthine', making it impossible for most service users to navigate. Whilst the Care Act marks a significant improvement in the law it falls short of what is required in practice to ensure that all vulnerable adults, and their carers, access the support they need.
It is too late now to change the Act itself. However, much of the practical detail is in the regulations and guidance which accompany the Act. Whilst the Act establishes a national minimum threshold for social care, the level at which it is set will be determined by eligibility criteria contained in the regulations and guidance. The government published the draft regulations and guidance on eligibility on the 6th of June 2014, and these are now open to consultation.
The consultation on the draft guidance and regulations for the Care Act can be found here: http://careandsupportregs.dh.gov.uk/about/
. These criteria will decide whether a person has eligible needs and can access support within the formal system.
The eligibility threshold which has been proposed by the government is worryingly high which means thousands of disabled people would not benefit from the provisions within the Act. The proposed criteria fail to adequately recognise the basic needs of many adults with autism such as staying safe, building relationships or being verbally prompted to carry out tasks. The draft regulations also fail to specify the level of training in autism an assessor should have before assessing whether a person has eligible needs. The needs of adults with autism vary dramatically from one individual to another, and still remain poorly understood by many professionals. Under the current provisions many vulnerable adults with autism would remain at risk.
A campaign was launched recently by the National Autistic Society
, known as - #CarelessCampaign, demanding changes to the regulations
. Simpson Millar staff have joined, and we urge you to do the same.
The consultation closes on 15 August. The final regulations and guidance are due to be published in October 2014 ready for implementation in April 2015.
How Can We Help?
Simpson Millar are able to advise on a range of issues that may affect people with autism or conditions on the autistic spectrum, or their families and carers.
This includes advice around assessment, support, personal budgets, carers’ rights and issues around education, capacity, wills, trusts and court of protection. Equally if you have any concerns about a potentially vulnerable adult, please do not hesitate to contact us.
The Autism Show will be in Manchester on the 27th and 28th of June and we will once again be running free 1-2-1 legal advice clinics
on issues which may affect
people with autism. If you are attending come and find us at our stand.