Carers of people with a learning disability are “at breaking point” as already inadequate short breaks provision is cut back and many are denied the assessments to which they are entitled, Mencap warned today.
Eight out of ten family carers said they were “at breaking point” while a similar proportion said they their short breaks provision was insufficient, found a survey of 264 carers of learning disabled children or adults. Half had not received a short break in the previous six months, found the survey conducted from October to December last year.
Cuts and reduced access to breaks
Spending on short breaks for carers of adults with learning disabilities fell by 4% from 2010-11 to 2012-13, according to data obtained by the charity under Freedom of Information from 112 of England’s 152 councils. It also found that there had been a 22% reduction in the number of adults receiving short breaks from 2010-11 to 2012-13, based on data from 76 councils.
Mencap said its findings showed that the situation had not improved for carers since a similar report into short breaks provision, Breaking Point, published in 2003; this also found that eight out of 10 carers had reached breaking point.
Lack of assessments
Besides cuts to short breaks provision, the charity found that 62% of carers had never had an assessment of their needs, despite most apparently being entitled to them. By law carers should receive an assessment if they provide substantial and regular care; among Mencap’s survey respondents, 90% were providing 10 hours or more of care a day. A fifth of respondents had been refused an assessment.
Some carers also reported that access to short breaks fell in the transition from children’s to adults’ services and when their loved-ones moved from council-commissioned services to personal budgets.
‘Loss of identity’
One carer, Nicola, from Newcastle, whose son and daughter require 24-hour care, said: “The stress, lack of social life and pressure on the wider family has made me feel like a failure and close to breaking point. Without short breaks, I lose friends, lose my identity, and become isolated and unable to provide the care my children need.
“We rely on short breaks, but we have been told that my daughter will get far fewer breaks now that she is in adult services. What’s more, there are plans to close both of the local authority short breaks units that my children use.”
Care and Support Bill
Mencap said the draft Care and Support Bill provided an “excellent opportunity” to provide carers of adults with learning disabilities with an entitlement to short breaks based on need; the bill would by giving carers of adults stronger assessment rights and, for the first time, a right to support if they meet eligibility criteria.
Mencap said guidance published under the bill should ensure that the threshold for an assessment was “as low as possible” and that councils have a clear system of determining need for short breaks.
It also called for transition to be strengthened so that “adult short breaks services follow on as smoothly as possible from children’s in terms of frequency, duration and location”; Mencap suggested this could be promoted through elements in the draft bill that seek to ensure children do not lose access to services at the point of transition.
The government has allocated £400m to the NHS to spend on short breaks for carers from 2011-15, and primary care trusts have been required to identify how much they are spending on breaks and ensure spending plans are agreed with councils.
Mencap said allocating funds to the NHS had disadvantaged carers of people with learning disabilities as it claimed the health service had focused spending on carers of people who required specialist medical interventions or could benefit from rehabilitation.
Mencap called for ring-fenced funding for carers’ breaks to be allocated directly to councils.
Full details on the Care and Support Bill