By Simon Stevens, @simonstevens74
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.
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Very interesting article. I think Simon’s conclusion is correct – with the exception of those with a learning disability or very vulnerable for other reasons, a culture change is happening among service users .
Many service users, also show an awareness, honesty and understanding of nuance that seems lacking in policymakers. The next question is where do we go from here. Can social care policymakers and professionals engage with ‘Experts by Experience’ in the way the NHS is beginning to and involve service users in the design of programmes? Is that cultural shift possible among policymakers (who want to be seen as tough on ‘freeloaders’). Is this possible among professionals trained to see ‘Assessment’ as a service – effectively taking on the role of gatekeepers to resources?
Thinking about this.. One of the problems with having scarce resources and assessments with a very high threshold to reach them, is that potentially almost every service user is getting a package that is wrong for them. The bar has been set so high that by the time the service user can access help, they now need an enhanced service rather than the one they are being given.
The other issue is one of shoe-horning into programmes that were the ‘bright idea’ of someone high up the food chain- The Troubled families Programme for example,so families who need NHS support eg around poor mental health of a family member, are given parenting classes. The people who really need parenting support are unlikely to be organised enough to turn up for for 12 group sessions while those that need NHS support are so desperate they would turn up for anything that is offered.
So I guess this all adds up to a dysfunctional, ineffective, expensive and very poorly targeted system of support.
People like Simon and me and countless other ‘service users’ are the key to fixing this system and that really is a major challenge for policymakers and many care professionals but I personally see no alternative.
This is interesting. I have done lots of ILF transfer assessments. I wish I did have clued up service users, altho they can be scary as we are always unsure of where we stand legally, and we don’t have manager back up. Managers do want us to cut the package, but back down when there is a challenge. And we don’t know how much money is on the table, as no one takes any notice of RAS. I do ask service users to think of other ways they can meet their outcomes, but they usually don’t, and we don’t have these miraculous community resources. It is a blunt, unequitable system.
Same experiences happen in Children’s Services though in obviously different circumstances. A couple known well to me are adopters with a now-adolescent child they and their family love dearly, who as well as being a star of drama sport & academic disciplines is also very deeply Attachment Disordered, at times uncontrollably angry & physically, emotionally & verbally abusive to a dangerous degree. Post adoption support non-existent for 10 years so far. School is a comp, Attachment Aware, working incredibly hard but distress-driven violence & destruction and a score or more absconding incidents including 24 hour absences police searches etc mean it simply can’t hold on. Family has, after input from CAMHS & other support, but with an eventual descent into ABH with serious intent, and with deep distress, entered into a S20 agreement/temp foster care. At which point SCare has turned on them, en masse and including the IRO: blaming, fault funding, “its only your view this is Attachment Disorder” when 3 separate clinical psychs have diagnosed it, using “he/she says …..” as a reason for downright punitive SWk behaviours, including a file note they had to break down the doors to get hold of, that says “parents want to know everything & they ask questions” as an accusation. Given they’re both professionals & they have solutions that would work for a child they love? Yes, of COURSE they do. “We’ve applied for a care order” is the latest, out of the blue and meeting nine of the criteria for an Order, but given 6 month guillotine trumps both common sense AND good practice. Atrocious. Unprofessional. Not in the child’s interests in any way, at all. But for too many adopters? Read the Selwyn Report. Not rare.
Typos (apologies) fault FINDING not funding. And meeting NONE of the criteria for an order, not nine (!)
I’ve had the opposite experience. My son was brain damaged, now 38. The LA adopted a “like it or lump it” policy, refused point blank to discuss anything with me. I later found out the resource allocation form was incorrectly completed – said my son came home to me each weekend, when he actually comes home alternate weekends. As a result, the form concluded that he needed much less care than he actually did. Staff refused to review the resource allocation form. After a year of endless letters, phone calles etc. it’s all now in the hands of a legal aid solicitor. What a waste of time and money!
All I wanted was to agree what was needed and make sure what was agreed was provided.
The ideal of social workers working in partnership with service users and as advocates for them seems a faraway dream when it comes to care packages. Of course, we are also to some extent agents of the state whether we like it or not, if the state pays our wages, so we have to ensure value for money. It is our job to be clear and honest with service users, and if we feel we are not able to assess and meet needs fairly because of budgetary constraints, we should explain that is the reason why the care required is not fully available and enable people to complain. We also have to be clear that wants and needs are sometimes different. Well informed service users should not be a challenge, and can lend strength to our cause of getting a fair deal for them, but there is a fear that this is at the expense of less well informed service users and/or those who are not able to speak up for themselves. In my experience social care departments (not necessarily individual social workers) are very suspicious of well informed care users who may well be experienced campaigners and either give them what they ask for or resist their reasonable requests and get very legalistic as with the adopters above. Sometimes we may advocate for service users but there may well be occasions when we need them to advocate for us (replacement of qualified social workers with less or otherwise qualified staff for instance), so it should be a partnership.
‘there is a fear that this is at the expense of less well informed service users and/or those who are not able to speak up for themselves’.
You might be surprised at the number of campaigners who fear the same thing and campaign for ‘fairness’ because we are aware of our own resiliency that others in our position may not have for whatever reason – that is the common ground between many campaigners and professionals.
Absolutely agree. I know I will always be okay, I always felt a responsibility to made it a fair system.for those less informed. And as an advocate, I am going to be more feared.
Good to read about Simon’s experience. At present there is very little information about how the Care Act is being applied.
The only other situation involving ILF that has been reported is the judicial review of Luke Davey’s circumstances, which I have described in an article I wrote for Community Care
https://www.communitycare.co.uk/2017/04/13/lessons-social-workers-care-act-test-case-wellbeing/. His personal budget was reduced from £1,651 per week to £950 per week after the ILF closed. He unsuccessfully argued that this proposed reduction posed risks to his wellbeing and the council had made unlawful decisions.
Simon – it would be useful to know whether your care and support needs were reassessed, or did the review just consider whether your personal budget was sufficient to meet your existing needs? As you may know the Care Act statutory guidance doesn’t require a review to include an assessment of needs unless they have changed.
Hi Peter, it was a full assessment and there was no sign of uneligible needs and conflict. I had no sleepover which I know has been an issue for ILF transfers and because I worked it justified ‘leisure’ as a wellbeing need. The issue was costings and the fact the ilf transfer project ended before my assessment was finished, as I was clearly the last one.
In my experience, social workers can not cope with clued up parents of SEN children. They are seen as a threat and then the social workers get defensive and start formulating non existent child protection concerns to cover up the fact that they are unlawfully withholding the support they are supposed to give. To be fair, social workers on the ground probably as frustrated by the system as parents are. A little bit of honesty would go a very long way. Most of us understand that there is public service constraints and will be sympathetic if circumstances are explained.
I have a child with an attachment disorder who will soon be an adult. Our family have suffered deeply. There is no help from the Authorities other than the ‘help’ Lizzie speaks of which would have finally resulted in highly questionable ‘care’! We didn’t go that route – in for a penny in for a pound. No matter how many ‘assessments’ ‘they’ do, the professionals don’t engage – they are frightened (not nearly as frightened as a family with locked doors to protect themselves) – but they can and do go home at night. There aren’t the packages to meet the care of many people – young and old alike – there aren’t the community services, most people don’t want institutions. The old are being shoved into modern workhouses – they want to be at home but there is neither the robust monitoring of home care agencies (many of which treat the system as a cash cow with no ‘care’ involved), nor the community back up and the professionals don’t have the knowledge, time or commitment to make this work. Same for children, many families don’t want children in institutions of any kind and sometimes there is no option but for many in the middle more creative thinking and more knowledge and more engagement would make the world of difference to peoples lives.
I WOULD say this, I know, because I’m a trainer – but the problem at both extremes – ‘Like it or Lump It, that’s all there is’ – or ‘Of course you can have this guesstimated money and do whatever you like with it’ is lack of legal literacy because councils have stopped doing any training on it – due to lack of funds, no doubt – despite it being an obligation to keep staff trained and competent in it. And why? Because they is hardly anyone using legal principles or judicial review to challenge decisions about cuts or eligibility….whereas before the Act there were about 5 cases a month. I don’t think that that indicates progress – I think that that signifies the undermining of the rule of law and the thin end of a grim wedge for social work values and the rights of people with care and support needs.
So have had similar experiences to the writter of this article and am in fairly similar work and poistion. Ive not had many dealings with ILF though.
In my experiance the Social care community will unfortuantely always fear an educated service user for a couple of reasons. The first social workers are trained generically and not specifically. Thus thier actual knowledge of the care act and guidance may not be as good as ours. Secondly increasingly and worryingly im seeing more and more community support officers and less and less Social Workers, obviously there is a cost saving but they do not have the training given to social workers.
When ive been visited or ive supported others, when i enquire about their actaul knowledge of what a ” need” is ive very rearly had a good answer. If they dont even understand that the assesement should be based on needs not following a form what chance really do service users have.
Completely agree ras system is usless and what everyone wants to know is how much and what can i spend this on. Again youll get very different answers. When in fact is should be anything as long as its not illegal or for cigs or alchol and you can relate it to a need.
Instead of a us and them, i too want this to be a joint venture, where decissions are being made by the service user and the social services just support us in living our lives. Unfortuantely increasingly due to tightening of purse strings it looks like it want happen.
Shame really i actually like the way the Care Act works and the guidance helps. It even mentions and talks about Assisted Assesments, as mentioned above. But ive yet to see one authroity implment this. Just think of the time and money that could be saved.
In Sheffield assessments are carried out by cap’Care Managers’ who have no medical knowledge or specialist training – they are enhanced clerical staff essentially. Their modus operandi is to make many of the right noises at assessment, delay sending out paperwork and then send details of a much revised package. Respite seems to be their main target.