Chris Cusack, who has Spinal Muscular Atrophy (SMA), examines how Direct Payments and the level of care people are getting differs vastly between local authorities – it really does seem to be a postcode lottery.
In England, social care provision has undergone radical changes over recent years. In the early 1990s, the money needed to cover people’s physical care (currently called Direct Payments) was funded by each person’s local authority and a central government body called the Independent Living Fund. However, thanks to our seemingly perpetual state of austerity, there has been a decentralisation of services – and now a massive disparity in the services provided.
These changes began, as all things do, with good intentions. With the quest to allow different regions to be more proactive with their own budgets and to meet regional differences in demand. However, there is a growing sense of worry. No, worry is not a strong enough word. A sense of persecution and anger amongst disabled people at the practical consequences of these changes.
The Care Act
The Care Act was introduced in England in 2015 and attempted to set out the responsibilities of local authorities after the decentralisation. It stated that local authorities were charged with “promoting an individual’s well-being,” rather than simply providing care.
It’s been just under three years since this act came into force and, in reality, the subsequent systems put in place appears to not be up to the task in large areas of the country. In a report published by In Control on behalf of the Independent Living Strategy Group, 58% of respondents reported that their quality of life had reduced, or reduced significantly, over the preceding 12 months.
The same report said that a quarter of respondents had stated that the hours of work or volunteering they could do had reduced significantly as a result of changes in their care. This comes at a time when the government is keen to get every capable adult into the workforce, both for the health of the economy and for the individual’s positive sense of self.
Independent Living Fund
After the Care Act, the money previously ring-fenced and used by the Independent Living Fund was distributed amongst local authorities. However, these local authorities have very large disparities in the number of disabled people falling within their boundaries.
They also do not have the economies of scale that the Independent Living Fund had and therefore have far larger administrative costs. This has all served to put a severe financial burden on some already struggling councils.
The best way to illustrate the end result of these changes is not through statistics and statutes, but to show the human effects through two cases – my own and that of a friend.
My own story
I am 49-years-old and live in Hertfordshire with my wife. My particular subtype of SMA – type II – is progressive and, currently, an incurable condition. It has left me with very little muscle strength and completely dependent on 24-hour care.
I currently don’t work, but my wife does. My local authority performs yearly reviews of my continuing care package. These are used largely to ascertain whether there have been any changes to my condition that warrant increases in my package, to ensure it adequately meets my physical needs and allows me to live as independent a life as possible. I feels supported and largely in control of my own care needs.
Lorraine is a little younger than me and lives in Coventry with her disabled husband. She has exactly the same condition and subtype as me, and requires an identical level of care.
When Lorraine’s care was reviewed in February 2017, she was told her essential care was going to be cut, leaving her without any night-time support and only the bare minimum during the day.
Her assigned social worker had produced a report so full of mistakes that it didn’t even have the correct condition stated – he had put multiple sclerosis instead of spinal muscular atrophy. Being a strong, independent and intelligent individual, Lorraine sought legal advice and subsequently demanded the assessment was done again. She also lodged a formal complaint about the social worker.
Lorraine received a formal apology from the adult social team, who agreed (as it was obliged to), to reassess her with a female social worker. As the council were keen to supply any technology that could feasibly take the place of Lorraine’s team of carers (and thus, cost less), she also had an assessment by an occupational therapist (OT).
The OT reported that there was no equipment that would help with the level of care that Lorraine requires to live her everyday life. Along with Lorraine’s care manager, the OT agreed that Lorraine required 24-hour care and sent the assessment back to the adult social care team.
Whilst waiting to hear, Lorraine wrote a care diary, logging every single action her PAs had to take for her. She also got a letter from SMA Support UK to back up her case.
After the threat of a health-endangering reduction in her care having hung over her for a year, in January 2018, a second social worker was sent to assess Lorraine. This assessor had not prepared for meeting Lorraine and knew nothing of the background of her case. They also stated that adult social care does not, under any circumstances, pay for night care.
Lorraine’s case was then assessed by Continuing Healthcare (CHC) – a fund of money coming under the auspices of the NHS rather than the local authority – to ascertain whether it would be able to fund her overnight care. CHC is primarily in place to provide a level of care for someone with an ongoing medical condition, such as cancer or someone recovering from medical trauma.
But, as expected, her case was turned down. Her latest social worker has simply offered her a single hospital bed – forcing her out of her marital bed – and adult nappies in case she needs the toilet when her care is not available. She has, once more, had to go back to the lawyers to continue her fight.
It has all, understandably, been a source of extreme worry for Lorraine. Faced with the prospect of this kind of fight for her basic human rights for the rest of her life, she has admitted to suicidal thoughts.
The state of disability care
Lorraine’s case may seem extreme, but hers is a story being mirrored up and down the country. Current social care through direct payments has more to do with your postcode than your physical needs.
Impoverished local authorities are being forced into impossible situations, where the only way to claw back money is to target the most vulnerable in our society. There is a silent crisis looming, a crisis already causing both psychological and physical harm to many.
The Care Act was meant as a way to help enhance the lives of the disabled people under its care. Not as a vehicle to allow local authorities to provide the minimum care simply to stop people being admitted to hospital.
Basic care is not being met by a significant number of local authorities and we, disabled people, will be silent no more! Write to your MP, petition your councillors, be heard and take back the power to affect positive change and good relationships with your local authorities.
By Chris Cusack
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