The biggest secret of personal budgets is no one wanted them, not users, not professionals, not the government, and not even Simon Duffy. We all wanted Individual Budgets! The idea of individual budgets was that funding from local authority social care, Independent Living Fund, Access to Work and others would come together to form a single budget, great idea.

I was part of the Individual Budget pilot in Coventry and maybe one of the few people in the country who can claim they still have an individual budget. The problem was the Independent Living Fund refused to cooperate and I don’t think Access to Work had a clue what it was. So Individual budgets quickly became personal budgets that only focused on local authority funding but unlike a direct payment, it could be, and is often, merely an itemised bill of what is spent on behalf of a user.

The problem with personal budgets was they came with the demand from DH ministers that local authorities adopted the Resource Allocation System (RAS), the brainchild of Simon Duffy. I know he will be reading this and that we have not been on each other’s christmas card list for many years, and we have actually never met. I will let Duffy explain what RAS is. RAS works well when you are sharing out a packet of sweets to those who don’t really depend on them. Decommissioning unneeded day care services for people with learning difficulties, taking out the savings, and divided the money up ‘fairly’ so they can be used creatively, works. But transferring the Resource Allocation System model en mass to all the client groups was a disaster as a ‘right’ quickly became an ‘indicative budget’ and a pointless exercise of a failed policy that wasted so much money.

The bigger picture in that sadly even if you brought all the cutting edge ‘disability activists’ in the country in one room, they would be metaphorically discussing improving the treatment of black slaves, not their liberation. There is now a clear divide in how current politics and the media generally regards people with lesser impairments and those with higher support needs. I am aware that considering SHA asks me for a contribution knowing my unusual background, many readers will refuse to acknowledge this fact. But it is a fact the new/old Labour Party needs to understand and work with, and meaningful personal budgets is one solution.

One of  the oddest issues I have had working in the social care field is that despite people understanding I employ my own personal assistants and I am self-employed, I am still politely asked by the most senior of people who pulls my strings as they hope there is a comfortable and acceptable puppet master who is keeping me under control when I misbehave. When the penny drops I am the puppet master, you can see the colour go from their faces!

I believe real personal budgets is about creating puppet masters not puppets. This is extremely scary for national and local government, professionals, charities (like Learning Disability England), service providers and even families, who have depended on disabled people being puppets for power, financial benefits and other reasons for many decades. Trying to get people to let go of this power is the greatest challenge of social care as this is not happening as fast as some people would suggest.

If I had the opportunity to start again with personal budgets and change any laws, I would scrap every ‘additional cost’ monies and benefits like DLA/PIP, a part of ESA, current local authority funding, Access to Work, education and health support etc and roll it into one super personal budget. These would be coproduced between professionals and users, and made up from a number of awards designed by them, like work, evenings and weekends, so someone does not have all their eggs in the same basket in terms of reassessments.

These new personal budgets will be managed by local public bodies, like ‘Support Coventry’ connected to local councils and working within the national framework of ‘Support England’. Depending on the level of funding, it will go to ‘panel’ that will include trained service users from other areas. Most importantly, there will be an effective appeals and complaints system.

We need to end label based entitlements whether they are real, imagined or expected. Having diabetes or any other impairment label should not automatically mean being entitled to a Motability Car. People should get what they need when they need it. Two people with the same degree of any specific condition may actually have a very different set of needs and outcomes.

My impression from many discussions with people over the last decade is that my idea of ‘super personal budgets’ is on the cards and its a matter of time whoever is in power. The current way disabled people need to access relevant support is broken culturally and functionally, going back to 1948, and this is the way out for a fresh start.

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  1. The huge majority of people who are disabled and need support are the frail and voiceless elderly, not the potential power wielders like yourself Simon. Schemes similar to this have been used to strip them of that support, while small pilots are cynically used to target the tiny minority who can actually wield power, and are convinced its a great idea (for them), and are able to and prepared to speak out, where the others, the losers, can’t. I work strategically and locally and nationally and it took me a while to realise what was going on, so I don’t blame you. When you only see your well served cohorts in a small well funded pilot, it is easy to think this is how it would be for everyone. Sadly to fund you to this level, others are dying slowly and unsupported behind closed doors, with 15 minute care – dressing and toileting or food and medications anyone? It is OK to say use the money to get your own carer, do you have any idea of the dangers in this? Financial and physical abuse in these situations is not uncommon when someone is vulnerable. I know a number of ordinary paid carers who are boosting up their hours on their own time (totally unpaid) to deliver something better, as they cannot bear the suffering. I too was used as a trojan horse to facilitate cost cutting for the less powerful majority some years back. It is so easy only to see your own situation.

    Then there are people like me. I just practiced dying at A&E again last night/the early hours of this morning. I look normal, even extra healthy, but only I and my carer know the price I pay to keep going, and keep the problems hidden behind closed doors. I can spend an awful lot of time in bed, or in a wheelchair, just to look normal for one day. Get it wrong and it could be fatal. . I saw what happened when my LA got involved with my mum’s care and then my father’s. My husband was their carer. As a consequence I don’t want any LA within a million miles of me poking their noses in, deciding my family can do the lot – and give up their work and lose their homes to do so. I don’t want to have to beg in front of a panel from the LA – cashstrapped all, so with hardly any funding – it is not going to be ringfenced – and with a few service users who themselves might not understand conditions as rare as one in a million/the issues with comorbidities. In fact that begging might well kill me – any stress is potentially fatal. I don’t want my budget co produced, I am in full and total control and use it according to how severe things are at any given time.

    I am intrigued as to why you think diabetes gets you a mobility car? Have you ever been through a DLA assessment? If so you would know just how impaired you have to be. Diabetes as a diagnosis gets you nothing, you would have to be unable to walk due to severe neuropathy/amputation. Even then, if you can actually get about in a powered wheelchair you might not get anything. PIP is even more stringent. It has even been denied to people dying in hospital as they are declaired fit for work. I am also intrigued that you don’t know much about the realities of what actually happens to so many frail elderly people as their budgets dwindle with each review, or they are left totally unsupported, despite the fact that anyone with a heart would say they more than qualified, as the criteria gets more and more restricted?

    If you want to talk for the disabled, please make it clear you are only talking for people like yourself, and you are in a tiny minority in the grand scheme of things. Believe me I work (from home when able) with a group with over a million and a half members, very many of whom, as a result of age have real caring and disabilities experience, and are often disabled themselves. They don’t want this.and they have told us to fight the devolvement of attendance allowance to the local authorities tooth and nail. What you propose would be a stab in the back for the voiceless and powerless – many don’t have families,and many are scared to say anything, even begging their carers and families to silence in case even more is taken away. Please use your power to fight for the voicess and powerless. They are the easy target, not people like you.

  2. bayrok says:

    Can I explain how Diabetes – in some circumstances – can get you higher rate mobility under PIP, which can be converted to a Mobility car if you wish. In combination with another disability such as , e.g., a learning disability such as Down’s Syndrome, it is a really significant double-whammy, because it wrecks the ability to travel independently and safely on public transport if you lack the ability to carry out the complex calculations required to manage your medication, and to take emergency action if blood sugar levels start to crash. This means you do actually need someone with you when out and about on anything but short local trips, to help in the event of a hypo.
    Higher rate mobility under PIP takes more account not of the physical ability to travel, but of the real circumstances and ability of the person to travel, and many people with learning disabilities are finding that they are now better off by £50 a week under the new and improved PIP assessment.
    Sorry, I know this won’t work for everyone with a disability, but there is no way my son, for example, could travel independently on an unfamiliar route, despite the fact that he can walk for several miles: whilst many people with physical disabilities can and do drive a car and go to work completely independently.

    1. I totally agree bayrok. I was replying to this statement from the article below which is actually untue. You don’t get a car based simply on your diagnosis, as anyone who has one, like your son, will know:

      “Having diabetes or any other impairment label should not automatically mean being entitled to a Motability Car. People should get what they need when they need it.”

      I was highlighting the inference that getting a diagnosis of diabetes is not a passport to a car on motability just by itself, as the article above was inferring, and it is getting harder to get on the higher rate. They are reckoning about a third of people will no longer qualify, and so far that seems to have panned out. I have heard some really bad stories, since the rate was difficult enough to qualify for under DLA.

      For myself, I have an injection for my condition (which is not diabetes, though I live with diabetes), but rapidly lose consciousness, and need to get to hospital or I will very likely die. That is true even if the injection temporarily stabilises me. I am not always mentally able to do it – brain starts to shut down too, and I get very confused before losing consciousness. Trouble is my being violently sick, and doubly incontinent + the incoherence means I look like a drunk. Dangerous to do this in the street unaccompanied. It comes out of the blue, and the brittleness of the condition is caused by other co morbidities, and so is not that well understood by whatever specialist I am standing in front of at any particular time. My likely lifespan is another couple of years apparently. I am also a haemophilliac.

      Enough about me, I think we are coming from the same page on this as regards diabetics and motability cars. I would never suggest it should be a barrier. A lot of diabetics out there, and I am sure 100% of those who have one already, totally need their cars, but a diagnosis of diabetes, with some lifestyle change suggestions, isn’t an open invitation to apply for a car on DLA, nor is any other diagnosis in and of itself. You have to show you need it, really need it, already.

      I am going offline and back to bed, as my eyesight is now going too, and I feel a bit crap

  3. bhfisher says:

    A powerful article and powerful comments and contributions. Direct payments make a really big difference to some people, strengthening them, making them more confident and able to do more things as they wish. However, as all the evidence shows, many people have trouble using them.

    There is a privatisation risk with PBs. They can get packaged up and can easily become part of an insurance-based system.

    In Holland, I understand that they rapidly ran out of money and soon had to slash budgets.

    So, my Q is: how can we maintain and improve the benefits of PBs and minimise these risks? Or is it better to scrap them because the risks will always outweigh the benefits?

    This is a gap in the SHA’s policy and we would like informed discussion.

    Brian Fisher

  4. There should be in depth training for staff, to be able to state the pros and cons for the different cohorts and circumstances, and even veto PBs if necessary, and in specific circumstances. There should be no pressure on the staff to try to influence one decision being reached by a service user as opposed to another, except to support them to make the right choice in their circumstances. From experience PBs should be approached with caution for vulnerable groups (I have a friend who has been financially abused by several of his so called carers (police involved so I cant talk about it). I know of a lot of people who have had similar problems. If someone is this vulnerable then with support they might possibly manage a PB safely, but in some circumstances a veto might be the way to go.On the other hand, I know someone for whom it works well. For the sicker disabled it is often seen as too much of a responsibility. For the busier family supporters the same. I heard of one daughter whose spare room became an “employment office”, with all the paperwork. If administered properly it is costly. If administered cheaply it is a disaster, leaving people vulnerable and usupported.

    If PBs are one option amongst a number, and if not “sold” regardless for political reasons, then from what I have seen it is a valuable way to go for a smallish number of people., as long as nobody is herded into accepting it, people know the risks and benefits, can always swap back to a LA based system, and they have a place to go if they are being abused (and regular LA checks without the carer present).

    Because the largest cohort is the frail elderly, for whom it is generally speaking not the best option for safety reasons if nothing else – both for the carer and the person cared for – it is likely PBs, if properly used and people properly advised,,will never become the main option, so is less likely to be a privatisation route. Of course steps could be taken to ensure a heavier take up, both by spinning the benefits and by covert pressure from the LA/Government but that would be a political choice.

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