Sense report reveals carers fear for future of disabled adults and families

January 30, 2018

A report has revealed that 95% of family carers say they have little to no trust in local authorities to provide adequate support in their place, should they become unable to care for their relative.

A report by disability charity Sense found only one in three local authorities know how many disabled adults are being cared for by family and friends at home, with only one in four councils able to support carers to make contingency plans for future care options.

One parent who responded to the report said of his daughter’s uncertain future, “It’s very stressful. I find myself hoping that she passes away before me. No parent should feel like this.”

Sense is now calling on the Government to adequately resource local authorities to provide better support for disabled people and their families, now and in the future.

‘When I’m Gone’, the report published today, also revealed the elderly are becoming carers themselves, with 1.3million carers in England and Wales aged over 60. The research raises fears of a looming care crisis for disabled adults with complex needs, who risk being placed in unsuitable crisis care placements.carers crisis noreen and inge

Sense’s deputy CEO Richard Kramer said, “After a lifetime of caring, no parent or disabled adult should be left neglected and living in fear about the future.

Carers' warning are clear - inaction will shunt disabled adults into crisis care

“The clear warnings from families contained in this report about the consequences for them and their sons or daughters must be listened to as the current position is not sustainable. The costs of inaction are clear – inadequate planning and lack of provision simply shunts disabled adults into crisis placements which are challenging and frightening for the individual and inadequately meets their needs.

“We need to tackle the pressures facing families with better planning for future care needs and greater investment in social care to combat this looming care crisis. It is now a time to act so disabled adults and their families receive the right support at the right time and in the most appropriate setting.”

Inge Ahmad, 68, from north London, contributed to the poll of 990 carers. She cares full-time for her daughter, Noreen, 35, who has learning disabilities, is quadriplegic, blind, epileptic and without speech. She receives four hours’ respite care a week from the local authority. 

Inge, carer: 'I feel under constant pressure. If Noreen's not happy she will refuse medication.'

Inge said, “Noreen is delightful, but requires full-time support. I feel under constant pressure. I really worry about what will happen to Noreen if I can no longer take care of her.

“I don’t think that the local authority has many options, and the decision would be based on ‘where there’s a bed available’, rather than the appropriateness of the care. If she’s not happy where she is, and with the people who look after her, she will refuse medication, food and drink.”

Mark Ward, 50, from Peterborough, also contributed. He cares for his 24-year-old daughter Kerrianne, who has epilepsy and learning disabilities. They live at home, where she receives full-time support in all areas of her life, including with personal care and daily activities. 

Mark said, “I’ve spent years trying to find a solution and I feel like I’m blocked at every turn by social services.  I have no idea what would happen if I was sick. I expect that she would be affected by depression and more seizures likely. There is no-one that knows her medication, how she can be manipulated, or gets scared in new situations.

“It’s very stressful. I find myself hoping that she passes away before me. No parent should feel like this.”

Alongside the poll, which was carried out by YouGov on behalf of Sense, the charity have also published a toolkit: ‘Decisions to make: Steps to take’ aimed at helping disabled people and their families make decisions about future care and support.  The report and the toolkit can be downloaded here: www.sense.org.uk/helpfamiliesplan 

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