I’ve been a service user for 25 years. I’m also an independent disability and social care consultant, so I’m pretty knowledgeable when it comes to the Care Act.
I recently had my first assessment since the Independent Living Fund closed. It’s something I’ve known for a few years would be a critical process in potentially deciding the level of support I will receive for the rest of my life. I entered this assessment fully aware of the reasons for it and the need to transfer some of my ‘ad-hoc’ social hours, which were paid for by the ILF, into my assessed needs under the Care Act.
The assessment started well as I filled in all the forms with the guidance of the community care worker. But when, in the spirt of choice and control, I asked for costs to be included to meet my needs creatively, the council appeared unwilling to engage with me. I was prepared to have a discussion about those costs in terms of eligibility and so on, but I wasn’t given the chance. Instead, they put my assessment on hold for several months and began asking questions they already had the answers to.
The conclusion of the assessment was a complete surrender from the council, making absolutely no change to my support. I should be pleased but bitter experience has shown me that this non-assessment will merely store up problems for the future. A braver social worker could come in with an agenda to remove the perceived unfairness of my care package because it has not been properly documented.
‘Fair and transparent assessment’
The irony is I was not unwilling to consider a cut to support. If my outcomes could be met through different solutions then that would make sense to me. I will always ‘fight’ for the best deal I can have that is fair and legal and, as anyone would, I will use the law to win my arguments. But I would have been happy to sit down with the social worker and go through all the support I think I need to legally argue its validity.
I often hear other service users say “they cut my care” like it was a one-way conversation. My experience shows it doesn’t take much assertiveness to gain the upper hand. But I don’t want an upper hand, I want a fair assessment that is transparent. Social workers should have the skills and confidence to engage with someone at my level of understanding, like a patient who asks their doctor for the full truth. I am going to respect honesty, including the fact that cuts may be on the table.
I understand the Care Act. I understand that the resource allocation system is a mostly pointless and wasteful exercise. I also understand that on the ground – as opposed to the many conferences still spouting the rhetoric – that personalisation is on its last legs, with flexibility and creativity replaced by justifying every penny. I just want to cut to the chase and know how much money is on the table to manage my support, and to ensure the package is justifiable in the bad times as well as the good.
I don’t understand why the staff I engaged with seemed unwilling to challenge me as someone who understood the Care Act as much as them. For me, social workers are my equals and a partner in what is a legal activity of providing me with support. But instead they seem to fear me and would prefer to simply give into “my demands” than sit around the table.
I might be an anomaly now, but the Care Act has undoubtedly made it easier for service users to understand the law and use it in their assessments, which I think will potentially change the culture of the process forever.
Photo: Gary Brigden
By Simon Stevens, @simonstevens74