The National Autistic Society has called on the Government to recognise the social care needs of people with autism as it revamps its care system. The society is highlighting the high numbers of adults with autism who say they’re simply not getting the support they need, which is leaving them lonely and afraid. This call recognises the wider impact communication difficulties can have on a person’s life – making them more vulnerable in terms of their health and well-being.
As well as difficulties in building and maintaining relationships because of communication problems, a person with more severe autism can rely on communication to remind them to carry out the basic tasks needed in everyday life. The society is urging people to email the Care Minister so autism gets taken into account as they change the care system.
On Friday 6th June, the Government released draft guidance for local authorities to decide who will be eligible for social care across England, as part of their Care Act. However, the National Autistic Society believes these new measures fail to adequately recognise the basic needs of many adults with autism who need social care support, such as staying safe, building relationships or being verbally prompted to carry out tasks.
Last week the Daily Mail reported that, according to NAS (the National Autistic Society), half of adults with autism are abused by someone they know. 37 per cent said they had been manipulated to do something they did not want to by these so-called friends, while 44 per cent said fear of abuse or harassment led them to not wanting to leave the house. Meanwhile, a quarter of those polled said they have had their money or possessions stolen. The charity said the survey also revealed many adults with the condition feel they are being neglected.
Two thirds said they require someone to prompt them to wash, dress or feed themselves, but 70 per cent of these sufferers said they had missed meals because they don’t get this support while 86 per cent said they had not washed. NAS raised concerns that changes to the care system could mean this kind of neglect could become more commonplace.
A spokesman said that the Government’s proposals suggest that people will be eligible for care and support if they need ‘assistance’, which may not necessarily include prompting.
These alarming figures paint a depressing picture of the horrendous abuse and neglect experienced by many adults with autism.
Mark Lever, Chief executive of NAS
- ‘We have heard deeply distressing stories of men and women living in utterly intolerable conditions, exploited physically and financially by supposed friends or unable to care for themselves without support.
- ‘One professional told us of a man who had been found at home suffering from severe malnutrition and with mould growing on his skin as he was unable to feed or clean himself without prompting.
- ‘This is utterly unacceptable in 21st century Britain.
- ‘We know that many people with autism are able to live relatively independent lives, but many others need support to stay safe and healthy.
- ‘The Government’s changes to the care system offer a chance to support these at-risk individuals.
- ‘However, we are incredibly concerned that the current proposals as they stand do not recognise the basic needs of these more vulnerable people with autism.
- ‘It’s not too late. The eligibility criteria must be revised so that they explicitly recognise the support needs of those at risk of abuse and neglect and protect some of the most vulnerable people in society.’
A Department of Health spokeswoman said in the Daily Mail: ‘Until now it’s been hard for people who need care and their carers to know if they are eligible for care and support from their council and this has varied depending on where they live.
‘Our national eligibility criteria will make the system fairer by clearly setting out what level of needs must be met by all local authorities, putting an end to this variation.
‘This consultation makes it clear that people with autism, whatever their level of need, will receive help from their councils.
‘Those with lower needs will receive information and advice on what services and support are available locally to help them.
‘And our minimum £3.8 billion Better Care Fund to join up health and social care will focus on helping people to live independently and prevent them from needing more support in the first place.’
The NAS added: ‘The Government’s draft regulations would provide national criteria for all local authorities which will be helpful, but our over-riding concern is their failure to provide the necessary clarity about who local authorities should support.
‘They do not explicitly commit to supporting those people with autism who are at risk of abuse and neglect. Their eligibility for support must be made clear, otherwise local authorities will be able to interpret the criteria as they see fit.
‘These vulnerable individuals do not have ‘lower needs’. The people who responded to our survey had terrible experiences; in the most concerning cases, this neglect and abuse had spiralled out of control and ultimately led to death.
‘Information and advice alone will not be enough to protect these at-risk individuals falling into crisis.
‘Local authorities must be obliged to provide the direct support we know people with autism need in the first instance to stay safe and healthy.’
Further information…
Read more here.
Read more about the The National Autistic Society here.
Written by Rachel Harrison, Speech and Language Therapist, on behalf of Integrated Treatment Services.