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The Hidden (Emotional) Costs of a Personal Budget

January 24, 2016

I’ve ben tweeting today about my latest dilemma with the Personal Budget. I keep swinging between resentment and a feeling of guilt that I’m being too greedy.

When we were first told that we had to have a personal budget, I asked for three nightshifts a week. The LA “awarded” two. Since, I’ve had my own flat, we’ve actually had a support worker present on six nights per week. Two are paid for out of the Personal Budget. On Saturday, a friend stays over and takes charge if there are any problems. On Tuesday, the support worker ends his shift at 6pm. He starts again at 6am on Wednesday. He choses not to go home as he has a  long travel but stays over. I pay for two further shifts out of my pocket at £130 per week. I’m running out of money, so this is not sustainable.

Why is this important to me? I’ll be 57 in a couple of months. I have less energy than I used to have. If I don’t get a decent night’s sleep, I’m good for nothing the next day. I have a job where I have to be very attentive. I have a caring role where I need to have my brain switched on at all times so I can respond to Steven’s very detailed conversations. Dealing with “Services” is incredibly draining – 1000 times more so than caring for Steven. Dealing with Steven having a meltdown is a piece of piss compared with having to work out your tactical approach to having a Fairer Access to Care Services Assessment. Having someone work nights really works. For months now, I get about six hours sleep each night and Steven has learned that if he needs anything in the night, he sorts it out himself or asks a support worker.

So, why don’t I just go back to the care planner and ask for the Personal Budget to be increased. the answer in one word is fear. I have been warned and know that it has already happened to several people in the borough, that if the costs of living in one’s own home are deemed “unreasonable” by the council, the person will be moved into a supported living placement. Much cheaper because the resident’s budgets are automatically pooled (whether they want to or not) and both day and night support is shared between all the residents in the flats. Even though Steven would hate this and he would be at risk, it would undoubtedly be a cheaper option.

The only thing that I’ve found ever works in discussions with the LA is money. Getting respite in the first place was down to me making a strong financial case for it. Steven is only still allowed to live in his own home because I was able to demonstrate a huge financial savings from the old arrangement of commissioned agency support. Best Interests, the Care Act & Wellbeing don’t even come into it.

Harking back to my last blog post “What Happened to Sad”, I learned through bitter experience in 2010, that it is very risky to express an emotion or bring an emotional element into your argument. If I cried over what they were doing to Steven, it was recorded for their witness statements as “Mr Neary is too emotionally needy of Steven”. If I expressed any anger, it went down in the statement as “Mr Neary is unable to work co-operatively with the professionals”. So, eventually I shut up and didn’t express any emotion at all but that was viewed in the witness statements as “Passive aggressive”. Life is emotional. A carer’s life can be extremely emotional. But best not to express or allow emotions to enter into the negotiating a care package arena.

I’ll get it sorted. If I move some hours here and cut some hours there, I think I’ve got enough to cover one other night, leaving me only having to fund one night myself. That’s okay. I don’t need to ask and run the risk of having Steven’s life turned upside down. Of course, because the Personal Budget is so micro managed by the LA, I have to be careful about how I present the changes. There is nothing “flexible” or about “choice” with our allocation. Every penny of the budget has been “awarded” for something specific and moving money from day support to night support will probably be seen as breaking the contract. To be honest, I don’t care. I can feel so weary by the surveillance and the bureaucracy that in a perverse way, the weariness becomes part of my suit of armour. I’m neither worn down or worn out but it could easily happen.

Please. Let’s not call this Personalisation. Or being in control. Or person centred Care. Or choice.

It ain’t any of those things.



From → Social Care

  1. So apart from family carers ofcourse not having to do more than they can/wish AND the potential cost for someone if his needs escalated due to not having them met appropriately, family carers also have the right to have their own needs assessed and MET under the Care Act AND ofcourse if there were proposals to change Stephen’s living arrangements he’s entitled to advocacy if he has capacity to understand what was being proposed. I appreciate what’s happening to family carers who see hard-pressed local authorities trying to reduce packages BUT they have a statutory responsibility to met assessed needs appropriately and from all we know of Stephen and they must know it would be totally inappropriate to start messing with what works – and certainly he couldn’t share. The bottom line is that the Government’s cost-shunting through cuts is just passing the cuts down the line – bit sooner or later some LAs need to go them and point out they can’t meet their statutory responsibilities unless they are properly funded. (NB 2 LAs did start proceedings when the new Care act meant their criteria which were critical only would result in them having to find more money – and the Gov did suddenly find some money) I’d have thought the key issue for you here is meeting needs appropriately which any reasonable authority would see in Stephen’s case couldn’t be by any kind of disruption or shared costs…. let alone what are they doing to assess and meet yours? The worry is if you’re worried and I’d think the LA less likely to take you on again…. what is happening to other family carers…… (We want to get people equipped to know their rights and how to back them up – and certainly such as Irwin Mitchell have been willing so to do.We’ll have Belinda Schwehr (who’s REALLY knowledgeable and passionate about ensuring people get their legal rights)29th June in Manchester (Campaigning for Care Act Compliance) and hope to get family carers there to know what they can do. I’m not surprised you’re tired but you’ll never be on your own with this – so maintaining Stephen’s more stable life might need you to get some acknowledgement of your extra need – and maybe by doing ti as a carers’ assessment of need might be a way round??

    • Rosemary – I’ve had 5 carers assessments over the past 6 years and none of them produced anything.

  2. So true, dealing with the LA is infinitely more stressful than dealing with the kids.

  3. Sally permalink

    I think your reasonable,costs based argument is the way to go. It is very hard to put such an argument together without breaking down over the sheer, insane unfairness of the process.I completely understand your fear about giving them a chance to come up with some appalling alternative to the current happy arrangements.
    Our LA specialises in assessments which conclude that either need less or, usually, B that the assessment has taken so long it needs to be restarted..Miss Snodgrass has left so it needs to be restarted…God forbid you refuse a single interview no matter how many times you have been ground over the same information.
    I identify with the choice of negative labels for your completely rational emotional responses.
    If you cry you are too involved, possibly codependent? Unhinged?
    If you show anger..well then you are a terrible ungrateful aggressive person…and also unhinged.
    If you steel yourself and behave like Hal the computer…you are, as you said passive aggressive.

    I once asked a worker what, in her view, would be an appropriate emotional response to the situation, she having told me in detail that my response was inappropriate. She couldn’t answer.I have since worked out that the only correct response would be a Labrador -ish tail wagging approval of everything on offer…at the end of which you spring away from their office to go fetch whatever they have thrown in your direction.

  4. Shirley Buckley permalink

    Whatever you do or say, the LA will use it against you – you are the parent of a vulnerable adult and this makes you fair game. The MCA makes this possible, in fact it encourages it.

  5. Jayne knight permalink

    Once people have a personal budget they are very much on their own fighting their way through to survive
    At least with a provider there are a few more people in the room but that’s not the best way unless you’ve got a great provider
    I’m thinking that if Belinda is doing something in May maybe use the day to look at an action plan and letter to ADASS stating what is happening and more? Class action maybe if enough people? But people are getting very weary and scared. Rightly so with some if the actions Im seeing

  6. Sally permalink

    I recently made the mistake of reading the comments under a Guardian article about the tottering family of a young person with various disabilities and their struggles. Aside from the usual “you brought it on yourselves” attitude, a great many people advised that the parents simply whistle up some respite..have a weekend just the two of them…and the disabled person didn’t seem to do enough during the day…perhaps some sheltered employment? Activities?

    It never ceases to appal me that the general public, Hell,, even those employed in the field (CAHMS, GP etc) are so ignorant of the reality. They all imagine that:
    1.Everybody gets lots of respite and support workers ,and the way to get them is to simply make a call or hail them,like cabs. Hence, you are told to “use respite” and get blank or impatient looks when you try to explain that you can’t do so and so because you must stay at home and care for the person.
    2.There are heaps of supported employment, supported living, day activities to do.Heaps.All day long.
    3.There is no reason at all that parents can’t be in full time employment with such support to hand.
    If you and the disabled person spend way too much time with just each other for company, well then, you must be some sort of neurotic wanting to prevent your young person from living an independent life.
    4. A generous society has provided you with a smorgasbord of assistance and it is very easy to pick and choose what you want.

    It is essential that the reality be made public and in a way people understand. I suggest a Reality TVshow. A couple of the most pollyannaish smug enthusiasts for the wonderful support system…a CEO…a head of LD services…are to be stripped of their nice jobs and comfy homes. They will be left at home with a person with really significant care needs day and night who cannot be left alone. They are then given some little extra tasks-to arrange respite, an EHCP, a DLA form…and must negotiate them, deal with labyrinthine bureaucracy attend meetings etc.While providing care. We would need volunteers to play the condescending, unhelpful, threatening and evasive staff they will encounter, but I am sure LD parents would come forward, Every month or so we either change the system , add an extra layer or demand forms with threats.
    The sight of previously high functioning executives reduced to gibbering wrecks in a couple of months would surely be a better way of letting the general population know what it is like.

  7. Lizzie D permalink

    Nobody gets the reality until they find themselves dealing with it. I like the idea of a reality show, but it would be like one of those sleeping on a park bench versions, or living on a low income for a week. Doesn’t exactly catch the reality of doing it for years.

    Personal budgets add an extra layer of lunacy, but the state of not asking for more for fear of getting less applies to everyone. Ignoring and breaking the law is dead easy if there is no way of enforcing it without peril, uncertainty and a great deal of expense. Carers can be held to ransom because they will not put the caree at risk. The law is very clear that cost can not be used to withthold care, so let us pretend that it is about something else, that will work. If a caring parent is the obstacle, then destroy that parent and the problem is solved.

    Some Court of Protection judges seem to be on to this one, but not all. Saving Money is the dominant rule, and the general public are largely supportive of it. They sleep better at night by NOT knowing how it really is, until it reaches them. Appealing for sympathy doesn’t work, because the sums DO seem astronomical. Maybe the reality show should focus on showing the difference between what you (don’t) get for £3500 a week in an ATU, and what you can get for a whole lot less at home.

  8. nic permalink

    night support is the deal breaker , LA’s fight like hell when assistance is needed for non weight bearing wheelchair users needing support, preferring to allocate as functionally incontinent. Personal experience of that evil. Assistance to turn during the night and take on fluids is way down the priority list. There is no deal for you on this , if Steven can safely get a drink , go to the bathroom and return safely and there is no risk of him leaving his home unannounced they will refuse to allow funds to be moved. I am all for fighting like crazy for your budget but then the fight becomes hanging onto it . Sympathetic about your vintage( being of the same), sympathy for friends too who will become pensioners soon and continue in their roles for as long as is humanely possible . Dire situations arising now when illness occurs because of the more serious nature of the problems of being older carers and offspring having high support needs. Cobbling any solution together under the radar to cover short falls and avoiding emergency contact is becoming an art form. Too risky to do anything else.

  9. Truly permalink

    All,all,all of the above.

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