Two thirds of families caring for disabled adults with complex needs in Sussex are ‘living 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.
In a report published by the charity on Friday (February 2), 79 per cent of the families surveyed said they have no long-term plan in place for when they are no longer able to provide support. Meanwhile 91 per cent said 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 which reveals only one in four councils in England are able to support disabled people and their carers to make contingency plans for future care options.
Richard Kramer, deputy CEO of Sense, 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.”
According to Sense, there are 1.3 million carers aged over 60 in England and Wales. The charity says its research raises fears of a looming care crisis for disabled adults with complex needs, who risk being placed in unsuitable crisis care placements.
Only 11 per cent of family carers in the south east of England 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. More than half (52 per cent) said 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.
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 found here: www.sense.org.uk/helpfamiliesplan