Over two thirds (67%) of families caring for disabled adults with complex needs live in fear of what will happen to their loved one when they are no longer able to provide support, according to a new report by the national disability charity Sense.

‘When I’m Gone’, the report published today, reveals 3 in 4 (75%) families caring for a loved one with complex needs have no long-term plan in place for when they are no longer able to provide support. 9 out of 10 (95%) family carers say they have little to no trust in local authorities being able to provide adequate care to their loved one.

The report also highlights new Freedom of Information data that reveals only 1 in 4 councils are able to support disabled people and their carers to make contingency plans for future care options; and only 1 in 3 local authorities are aware of how many disabled adults are currently being cared for by family and friends at home, in their area.

There are 1.3 million carers in England and Wales aged over 60 and the research will raise fears that more disabled adults with complex needs risk being placed in unsuitable crisis care placements in the future. Many people with complex needs have issues with communication. If an individual is put into an emergency placement (hospital or social care setting) – that hasn’t had any time to prepare, or lack staff that are skilled to support with communication, it could mean a really difficult experience for that individual.

In the national poll of family carers, only 6% reported finding the process of planning for the future straightforward, with many saying they worried that a lack of quality care and a shortage of specialist services will mean their loved one’s needs will not be met in the future. 1 in 2 families said that they worry that funding cuts will impact the availability of local services for their loved one.

As part of a series of recommendations set out in the report, the charity calls for a duty on councils to ensure long term care plans are in place for disabled adults. This call is supported by 8 out of 10 of the carers surveyed. Sense is also calling upon government to ensure social care is adequately funded to meet the growing needs of families and disabled adults.

"I worry what will happen to my daughter"

Inge Ahmad (68), from North London, contributed to the report. 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.

“Noreen is delightful, but requires full-time support. I feel under constant pressure," said Inge. "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.”

"I have no idea what would happen if I was sick"

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 (pictured top), where she receives full-time support in all areas of her life, including with personal care and daily activities.

“I’ve spent years trying to find a solution and I feel like I’m blocked at every turn by social services," said Mark. "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.”

Sense 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.”

“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.”

Alongside today’s report, Sense 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

Response

The Local Government Association’s Community Wellbeing Board said: "Thousands of disabled people and their carers are currently supported by councils through care and support services and information and advice, and this report rightly calls for government to ensure social care is adequately and sustainably funded so this can continue." 

“Immediate pressures and the £2.3 billion funding gap facing social care by 2020 needs to be addressed by government in the forthcoming final Local Government Finance Settlement to help provide disabled people with complex needs, and their carers, with the care and support they rely on from their local council every day and in the future."

The Association of Directors of Adult Social Services (ADASS) said: "Social workers are skilled in supporting families to think through issues associated with a time when they may not be in a position to offer as much support as they do currently."

"ADASS would encourage social services to be proactive in helping people plan, however, we also acknowledge the very real capacity problems experienced by many local authorities." 

“ADASS hopes that the upcoming Adult Social Care Green paper will provide a long-term, sustainable funding solution, and is committed to working with the Government to support them to achieve this.”