Activist’s exposé of social care system shows some ‘live in state of fear’

A disabled activist has used his 35 years of experience as a service-user to write a detailed exposé of England’s social care system.

Donald O’Neal’s book – The Lack of Care Act 2014 – combines detailed research, knowledge built up as a service-user over more than three decades, and 11 interviews he has carried out with other disabled people who use council-funded care.

O’Neal (pictured), who lives in a shire county in the south of England, and has a 24-hour care package, says he hopes his book* illustrates “the sad truth of the difference between the rhetoric of what the Care Act 2014 offers and the reality of how adult social care is actually administered”.

He says his book shows how some disabled people are “living in a state of fear, desperation and left to struggle without the appropriate information and care and support they need to live a happy life”.

He describes how many disabled people experience bullying and threats at the hands of social workers and local authority administrators.

Others are driven into debt because of the charges imposed by local authorities, he says.

He adds: “Disabled people should not have to endure a living hell for months or years and take a case to the Local Government and Social Care Ombudsman, just to get the care and support they are entitled to.”

O’Neal has been involved in disability activism since the late 1980s, on issues including independent living.

One of the service-users he includes in the book as a case study is Mary, who had to use a lawyer to challenge her local council when it cut her care package unlawfully from £823 to £430 a week, which caused her “a whole year of unnecessary mental anguish, panic and fear”.

Another, Rosanna, describes how her social workers “kind of scared me into submission and now I just try to cope without them”.

In his own case study, O’Neal describes the threats and bullying he faced from both health and social workers, including a cost-cutting assessment by his health authority, while he describes how social workers told him that if he did not do as he was told, they would cut his funding.

O’Neal describes in the book how disabled people are subjected to council delays in providing their care, unlawful cuts to their support, unfair financial assessments, and local authorities that fail to provide a care package that meets their assessed needs.

He writes that it is “truly appalling and shocking what some disabled people are being made to suffer and for how long they have to suffer and endure terrible circumstances and deficiencies in care”.

O’Neal believes that social care should be free and funded through “general national income taxation”, and he also calls in his book for local authorities to stop wasting their social care budgets on “pointless initiatives” and wasteful care agencies.

He describes how a disabled friend was paying a care agency £200 a day for 24-hour live-in care, and while the care worker was being paid £60 a day, the agency itself was creaming off £140 a day.

His book builds a case for wider use of direct payments – he has been a user of direct payments for more than 20 years – so that disabled people “have greater control over how their care is provided and who provides it”.

But he also makes a case for using self-employed care workers, rather than an individual disabled person using their direct payments to become an employer of care staff.

And he says in his book that disabled people on direct payments need better support to find, employ and manage care workers and personal assistants and to manage their support packages.

He calls for local authorities to do far more to involve service-users to ensure they are “intricately involved at every level” of the social care system.

The best way to do this, he says, is to publicly fund user-led centres for independent living (CILs) in every local authority.

He writes: “The best way to improve how adult social care is administered is by involving the people who are on the receiving end of the system, adult social care users.

“Service users are the most valuable resource that local authorities have and they should be used to improve the system in every area and at every level.”

He adds: “Adult social care has been in crisis for over 20 years.

“I am one of many millions of people who are on the receiving end of a public service that is in continual crisis and I have no idea why it fell into crisis in the first place and why it continues to be in crisis for decades.”

O’Neal also praises the support provided to service-users by CILs like Disability Direct in Derby and Spectrum in Southampton, which also help to shape the care services of their local authorities by providing them with expertise from disabled service-users.

He adds: “There should be a national policy making all local authorities work with user-led organisations and fund user-led organisations.”

He is also highly critical of the way social care is controlled by local councillors.

He writes: “The past few decades have shown that local councillors should not be in charge of how adult social care is administered.

“People who know about adult social care should be involved in managing how adult social care is administered.

“Adult social care users should be intricately involved with the administering of adult social care and should be given decision-making power over how it is administered.”

O’Neal says that successive governments for the last 20 years have failed to fund adult social care adequately.

But he also calls for greater transparency in how local authorities administer adult social care, and he describes how he was forced to submit a freedom of information request to his own local authority because of its failure to be open and transparent about how it calculated people’s care budgets.

He concludes: “The Care Act 2014 does not paint a picture of the ‘promised land’, it is the promised land.

“The problem is that the promise is not being kept.”

*The Lack of Care Act 2014: Service users’ perspectives of a failing adult social care system, is available via Amazon, priced £17.99 in paperback or £8.99 on Kindle

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