Charles HenleyThe vast majority of adults with learning disabilities and their parent carers are experiencing mental health issues such as depression and anxiety due to cuts in services, a new small-scale survey has found.

The survey found that 96% of parents/carers of adults with learning disabilities experienced anxiety and depression due to reduction of specialist support services and 85% of people with learning disabilities cared for in the community now also had mental health issues – 54% ‘severely’.

Independent survey company OnePoll carried out the survey of 50 parent/carers of adults with learning disabilities ranging from mild and moderate to severe and complex from around the UK. The respondents said the stress, anxiety and depression they felt was due to the relentless decimation of specialist support services such as day centres, respite provision and sheltered workshops in recent years.

While a new plan to move people with learning disabilities inappropriately housed in assessment and treatment units back into the community was launched in October 2015, it ignored the estimated 1.4 million people with learning disabilities already in the community who are receiving little or no support, according to former day services manager, author and learning disabilities campaigner Charles Henley, who commissioned the OnePoll research. 

Many parent carers – often becoming elderly themselves as they look after their disabled adult sons and daughters – are already at breaking point or ‘on their knees’. The survey showed that 52% of families have been affected by the loss of services over the past several decades. Moreover, 82% of carers ‘fear for the future’ of their sons/daughters.

Comments from respondents included: “I won’t be able care for them forever and worried if they go into a home, how the care will be there,” and “I worry about what will happen to him if anything happens to me, because I don't think other family will take over the responsibility of looking after him.” Another said: “I worry that I will not have enough money to provide proper care should something happen to me. If they have to go into residential care I don't know if I can fund it.”

Henley said: “These new policy initiatives focus only on releasing a few thousand people occupying beds within NHS resources, but crucially lacks a clear, defined strategy for the 1.4 million children and adults already out in the community – a quarter of a million classed as severely disabled – whose support services have been vastly eroded and which this independent research proves, beyond a shadow of a doubt, to be at breaking point. Any newly-vacated beds will quickly be refilled by those who are on their last legs out in the community.”

“Carers fight extreme battles for both financial and practical support from local authorities because these people do not understand the specific and complex problems they face. The fact that the same local authorities are now seeking to rely on the community resources they have themselves wilfully been destroying over the past 30 years illustrates how chaotic learning disabilities policy is.”

Bob Gates, professor of learning disabilities at the University of West London and editor of the British Journal of Learning Disabilities added that one of the biggest problems is: “Treating a heterogeneous group of people as a homogenous one. There are lots of people and families with differing needs so 'one size' cannot fit all. We’re heading for a series of scandals similar to those of the 1960s concerning mental health and learning disabilities – they’ve just replaced one inappropriate system with another.”

Businesswoman and learning disabilities campaigner Rosa Monckton; parent herself of a child with learning disabilities, has been calling for the post of a ‘Learning Disabilities/Mental Health’ Minister to be created. “Our system does nothing for those who with learning disabilities once they have finished their education which, under the new Education Health and Care Plan, is at 25,” she said. “Yet no account is taken of the fact that [many] have to rely almost entirely on their parents to look after them."

Meanwhile, residential care homes continue to be closed, and parents in their late 80s can have to cope with finding somewhere else for their children to go. “I have never witnessed such distress and anger," said Monckton. "After a lifetime of fighting for their children, these elderly people are becoming ill with the strain and the worry, and a total lack of understanding and compassion."