Birmingham England (not Alabama)

I'm so glad I don't live in Birmingham. I've nothing against the place and the people I've met from there seem fine. But I'd find it very hard to live somewhere where the council was intent on not providing any services to disabled people that they didn't absolutely have to by law - and even then only provide the absolute minimum to maybe keep people alive.

Social Service Departments classify disabled people's needs into 4 categories - low, moderate, substantial and critical. Most SS Depts provide services for people with moderate needs, many are withdrawing services and only providing services for people with substantial or critical needs. A few, like Birmingham, want to restrict services only to people with critical needs. My own son is classed as critical, so he'd get some sort of service - but I'd find it difficult to live with myself where people with substantial, let alone moderate needs were left uncared for by the Local Authority. This is how the cuts are being implemented locally.

There's been a legal challenge to Birmingham, and they've been told this weekend, by the courts, in no uncertain terms that they are acting unlawfully. They've been told they didn't consult properly, that they are breaking the terms of the Disability Discrimination Act if they go ahead, that they haven't assessed the impact these cuts will have on disabled people and that they have a legal obligation to provide services - even if this means cutting costs somewhere else. This is good news of a sort - but I don't really want to live in a society where it's acceptable for the local politicians to feel that just keeping disabled people this side of the grave is good enough.

I really feel for the people of Birmingham - even if these cuts get rolled back a bit. There but for the grace of god .... Our own Local Authority would dearly like to send us down the same road - we're just luckier that we're starting off a bit further away. Thank you the real people of Birmingham for getting the courts to put a spanner in the works of these heartless politicians, lets hope this spanner can be mass produced to stop other areas doing the same thing.

Civil Rights turned a painful corner for black peoples rights in Birmingham, Alabama - lets hope disabled peoples rights can also see a turning point in Birmingham, England.

Hardest Hit protest

Just wanted to add my support to the Hardest Hit protest being held today in London. My son isn't well enough to travel that far and I need to stay here to help with care. I'd be there if I could but like many disabled people and carers it just isn't possible. Thank you to the disabled people who are protesting against the cuts for us. There is a virtual protest on Facebook if you want to support that way - on.fb.me/lcs3jh

The reports seem to show a good humoured march with a few high profile people, people 'chanting' in sign language etc. Wish I could have been there. Having said that, there's so far little report of it in the mainstream news - I suppose that comes of not breaking windows. I believe this is the beginning of a movement where disabled people and carers start standing up for themselves - even if they need a frame or a chair to do it. The cuts for us are real and hitting already with local authority service reductions, closure of facilities already happening, care packages being called in for 'review'.

If you're disabled, stand with us, if you're not, stand alongside us.

A big thank you

My thanks have to go to Disability Equality North West and the two legal firms who are helping them. They've taken out a legal action against Lancashire County Council over the so called 'consultation' exercise they carried out around their announcement of £179m cuts - heavily affecting people with disabilities, involving much front line care cutting and intended to take place very quickly. (They've been very quiet about how many jobs will be lost, but some estimates say 6,000, many from front line and care).

LCC took it's decisions about what to cut before it embarked on it's joke of a consultation exercise, and passed the cuts in full council, unchanged, even before the 'consultation' was finished. No impact assessment was carried out and there has been practically no attempt to respond to local peoples fears about how these cuts will affect them, with local Conservative councilors apparently unable to respond to their electorate without passing the queries up to LCC cabinet.

These cuts are deep and being implemented with an unseemly haste. They are heavily front line weighted and include closure of respite units for severely disabled children, taking services away from many people who get them at present, imposing heavy charges for what little services remain and massive reductions to the money given to care providers to look after elderly and disabled people.

When LCC say there is no money I get very angry. They have between £50m and £150m in reserves 'for a rainy day' - it's absolutely pissing down now. They are still intending to build new roads - tarmac is obviously more important than people. They are right now in process of letting a tender worth between £20m and £40m for superfast broadband - I've nothing against the internet, but I think providing care is a higher priority right now than allowing people to access this blog a few milliseconds earlier than at present.

Thank you Disability Rights North West. As carers we're trying to fight these cuts but we wouldn't have known how to object to this or had the time to do it even if we'd known it was possible. There are people out there who can see an injustice and are willing to do something about it - thank you.

Street theatre, from the gallery

Adrenalin starting to subside - it's been a long day. We went as a disabled family to let the County Council know exactly who they were cutting. But they cut anyway. They made £179m worth of 'savings' over the next three years. Mainly at our expense.

One saving will close disabled childrens' respite centres, another will take money away from charities who provide care to disabled adults, yet more will be saved by taking support away from people with 'moderate' disabilities. People with a learning disability are particularly being hit with their current support service being 'remodeled' (read cut). There are many more. They actually made more 'savings' than the headline figure because they're bringing in cash by increasing charges - less services for vulnerable people who have to pay for the little that's left.

No namby pamby library closures or reductions in cultural services here - go for the jugular - cut basic living services for those they think can't answer back. The elderly, the disabled, carers.

Anyway, we buttonholed a lot of councilors before the meeting - the conservative majority didn't want to talk, unsurprisingly, but at least they now know what a disabled person looks like. Then we trooped up six flights of stairs to the gallery (wheelchairs not admitted of course). There was some shouting from the gallery (one mum took exception to the phrase 'cutting out waste' justifying her sons service cuts - I thought she was quite restrained actually) so the police were called to clear out the public gallery. Shifting disabled families with a real grievance can't be the most fun a policeman gets but it kept the council's 'headmaster' happy.

It made the news so the message got through - it didn't stop the service cuts. So the real work starts here, when each cut gets implemented. It's not even militancy - it's self preservation.

These carers and disabled people didn't fit the quiet, heroic vulnerables, silently suffering nicely out of sight (and mostly out of mind) image the media likes. We can be feisty when we have to - oh, and we have the vote these days as well.

Back on the street again

Tomorrow we, as a family, will take to the streets - wheelchair and all (assuming he's well enough) on my first demonstration since I marched against the Vietnam war 40 odd years ago. I don't have the time or energy for this really - being a carer takes it out of you and doesn't leave you much free time. But this is important.

• Our council is reducing the money it pays charities to help care for my son.
• It's taking care away from people with only (sic) moderate learning disabilities.
• It's closing respite centres for learning disabled children.
• It's reducing support for people with personalised budgets and domiciliary care by 20%.
• And the elderly and disabled here are being hit with more than their fair share of these cuts.

If we don't stand up now and say clearly that these cuts are hurting real people and we won't stand for it, they will see us as easy targets and cut even more. People like my son are vulnerable - they need to be cared for. Reducing his service will reduce the quality of his life. Of course we'll protect him as much as we can, but we don't have limitless funds - and care costs. We can only stay awake so long - and care takes time. One day we won't be here to protect him - someone will have to do it and it's only fair they should get paid for this.

We won't be the only wheels on the street - whether it will make a difference, we'll wait and see. I don't really want to have to do this but I have to.

If we all really are in this together, some of us have barely got wet feet and some of us are in it up to our necks - and it's the weakest who are in the deepest. This is wrong.

So much for democracy

I used to think that our democratic system was a bit flawed. I'm beginning to think I was wrong - it's very flawed. When you have an issue with what your council is doing, you're recommended to go to your local councilor.

I have an issue - our local council is cutting services to disabled people (including my son) massively. I've written to - my own councilor, my son's councilor, our designated 'Disability Champion' councilor and the cabinet member responsible for social services. None have replied, other than to tell me that they've referred the comment to the cabinet member.

The only reaction he's made to any of us representatives of people with learning disabilities (to a communication described as 'powerful' by a senior officer of the said council) was to say he'd had no reaction other than a few 'vexatious messages'.

I used to be a reasonable man, but I'm getting less reasonable by the day. Being ignored by elected representatives isn't nice - being insulted for having the temerity to disagree is unacceptable. I belong to no political party - maybe I'll have to to be heard, but bet your life it won't be the one treating us like this.

Wheelchairs on the streets

Our own son's care 'reassessment' continues. Cuts will be to his transport, day care and nursing cover. Haven't gone through yet and we're still fighting to minimize impact on his quality of life but it's clear this is an attempt to cut costs. The only thing holding it up is the lack of staff at the PCT (Primary Care Trust) to carry out his health assessment - the one qualified person who knew him well enough has been made redundant.

Meanwhile our beloved (not!) County Council continues with its cuts. It's already started closing respite facilities for children with severe learning disabilities and approves it's budget for major cuts to Adult and Children's Social Care on Thursday. Went to a local rally generally against the cuts on Saturday - the learning disability contingent was over 20 strong, learning disabled, children and wheelchairs - it takes quite a lot for these people to brave a cold, northern February day for 2 hours, but these cuts are specific. They are damaging their lives and they know that. The council is already closing learning disabled children's respite facilities and withdrawing funding from day projects - the budget includes 20% cuts to personal budgets and domiciliary care, funding cuts to charities that provide the care on the ground, taking care away from those with 'moderate' disabilities and 'remodeling' (i.e. cutting) learning disability supported living.

Currently I'm helping organize our own demonstration when the council passes it's cuts budget this coming week. Apologies for delays blogging but this is too important and takes up a lot of time.

We may not win, but these cuts can't go unchallenged.

Cuts hurt people - really

Heavy week. Too many meetings with council about cuts (all day meetings - we don't have that sort of time), also care assessment meeting that didn't finish until 6:30 plus looking after him ourselves without nurse. It's hard work looking after him - meds, lifting, suction etc. but it has its rewards when he sits there on the sofa with you chilled out and just resting. There can't be many 28 year olds who'll tolerate an evening cuddle from parents watching tele.

Meetings about cuts or assessments don't have that upside. The stress and anxiety levels just get driven up and seem to hover at an uncomfortable edgy level for days. Sleeping, even without him here, gets to be something you celebrate and only comes when you're so exhausted you fall off doing something. Have to do something to stop the adrenalized thoughts going round and round in circles. Even resorted to low volume, watching channel Dave until dozed off last night.

I'll almost be happier once these cuts hit properly. At least we'll know exactly how hard things are going to be and can get on with living. Fighting them, when you know you'll almost certainly lose is really wearing. It's not like it'll stop when we're beaten, it just means life will be even harder than it is now. These cuts are real - we now know fairly well what's going to disappear - most of his transport, almost certainly some day care, probably some of his 'ancillary' services, and that's with us battling to keep them. The ones I really feel for are those with moderate learning disabilities. Our sons disability is obvious and we'll find ways to make sure his quality of life doesn't suffer, somehow - at someone's expense, if not our own. They are in line for effectively losing all their support, they won't understand what's happening or why and many of them will be left with no-one to fight their corner.

I'm not going to feel guilty that our sons service is stopping them and others getting a service - we're not responsible for these cuts. The politicians and senior council officials are. I will blame them. They've got this wrong, and asking us to choose who else to cut (which they have) so we can keep our service is wrong.

And yes, I am bitter.

Bitchy and scratchy

So much fro getting a life. This week looks pretty heavily booked already. All day Tuesday, all day Wednesday and Friday morning committed to meetings with County Council about cuts. Friday afternoon and this morning going through sons 'social care assessment' that's just arrived. (Still waiting for health care assessment - current timescale is now 3 to 4 months due to unavailability of staff.) So we've got this afternoon and Thursday to do everything else. And somewhere among all this is our sons care - which is not insubstantial and the most important thing of all.

I did get to chop wood yesterday - may fit in a bit of soldering this afternoon (I like soldering).

Son seems in reasonable health just now, slight chest infection coming under antibiotic control and scalp psoriasis settling down with gentle care. This psoriasis gets me down sometimes. It's quite severe and gets a lot worse when he's ill or stressed - and he can't tell us or scratch it himself. We just have to watch it really carefully and treat it quickly but gently. I can't really imagine how distressing it must be to have an itchy head all the time and be unable to do anything about it. I know it's theoretically one of his more minor problems but it must have a fairly major impact on his quality of life - that's why we get so concerned about it.

Anyway, back to the paperwork/meetings - I retired to get away from that - didn't happen.

Health but not wealth

Had a good couple of days with our son over the weekend. Took him out shopping in the morning, country walk in the afternoon and to a local 'family games' evening on Saturday. he stayed awake and alert right through. For him this is a real achievement. He had a good lie in Sunday i.e. didn't surface until late afternoon (including the most chilled out bath you could imagine). Oxygen sats high throughout. Apart from being on antibiotics for a bit of chest infection and the accompanying 'thrush' his health is really not bad just now (grabs frantically to 'touch wood').

Meanwhile, on the cuts front, his review seems to have gone into freefall now that we've asked to see a copy of the assessment being taken to panel. It should have gone today, then seemed to be delayed for 3 weeks and now looks in the medium to long grass. I can only assume they were worried that what they were proposing wouldn't stand up to scrutiny. I have to say that they were quite unhappy we wanted to see the assessment at all and were very reluctant to accept we had any rights - I think 20 years caring full time with no help, 8 years with some support and being his parents and main advocate give us some authority in this.

I also note that word is also coming out that on top of the front line service cuts being implemented, the back office savings are also emerging. If we delay long enough, I don't think there'll be anyone left in Social Services to do our assessment. I don't feel any happiness that many of the social workers and commissioners look like being out of work. We may not have liked some of what they had to do, but I do feel their hearts were in the right place - they were just never given the resources to do their job properly and had to spend most of their time fighting a rearguard action that endeared them to no-one. With service cuts and job cuts we're going to be on the same side of the barricades soon.

One month to heartbreak

The One Month Before Heartbreak campaign is under way. It's Valentines Day next month and the government's consultation on it's disability cuts ends that day. They want to cut DLA (and other things) that disabled people rely on. These are not benefit scroungers, they are real people with real disabilities, people in wheelchairs, people with learning disabilities, people with mental health problems, complex care needs.

My own son is affected by the cuts - he's in a wheelchair, pump fed via a gastrostomy, cannot speak, needs his airway keeping clear constantly, many fits a day, oxygen support etc. he is very visibly disabled but his care and support is still being cut. There are lots of other stories on The Broken of Britain website if you're still not convinced http://onemonthbeforeheartbreak.blogspot.com/ . Write to your councillor and MP about it - tel everyone you can what is really happening. Go to the 'consultation' meetings and make your voice heard - if you're a carer or disabled, it will affect you. If you're not, we need your help - please.

This government has started these cuts, the Lib Dems are colluding and Labour seems to have lost its tongue. So we have to speak out for ourselves.

We will be presenting our politicians with a bunch of red roses - each one tagged with a cut that affects us. The card will read 'Being disabled isn't a bed of roses, cutting off the roses leaves us just a bed of thorns.' We'll cut off the heads before we hand them over and read out each cut to them. You may want to do something similar.

I know it's only a gesture, but it might get them to think.

Carers with Attitude

Just back from a carers meeting where we 'discussed' the cuts. General feeling is a bit odd - they can't really believe all this is happening to their sons/daughters. There were odd sparks of anger, and a general feeling that we needed to do something to stop it. They want to speak to the managers and politicians directly but I think they're finding it hard to come to terms with the enormity of what these cuts mean for their own children.

When you go through the detailed cuts they say things like "... but they can't cut that, he won't be able to get to the doctors..." "... but that means he'll have to be with us all the time and I'm 73 ..." "... but she needs that to pay the rent, so how's she going to stay in her house ...". They're not really angry just yet - they don't really believe it. They (and me) can't believe how anyone could do this to a vulnerable, disabled person.

I know these cuts are real rationally, but when you're a carer, your horizons get pulled in and the circles you move in have lots of disabled people in them. They're your world, but outside, most people go to the pub or a football match or work, and there aren't lots of disabled people in their faces all the time. I mentioned Mobility Allowance to someone outside the 'disability world' recently and got the usual reaction - "most of them are scroungers who are just dodging work and cheating us out of our taxes - not your son of course - but most of them". Or another when the local cuts were mentioned "Well getting rid of a load of social workers has to be a good thing". But that isn't what these cuts are about. They're about locking up disabled people in their own homes and taking away the desperately needed care.

The real price of these cuts won't show until a few more carers commit suicide with their children and a few more learning disabled people are found starved in their homes because they didn't have the help to go out and buy food. Then the press will have a lot of 'Isn't this awful' headlines for a day before it goes back to covering the love cheat footballers.

This doesn't have to happen. We need to stop these cuts before they do any more damage. We carers need to get our heads out of the sand and start shouting. We need to stop being the silent, heroic martyrs the press and TV love to wheel out for a nice heartwarming end to the programme. We need to be Carers With Attitude.

Bad times just around the corner

I don't normally bother with new year resolutions - I tend to get overtaken by events as sons health fluctuates, care crises intervene etc. etc. but I think this year is going to a bit predictable in some respects.

Afraid the main things on my mind this year are going to be surviving the cuts.

• Planning to manage without wheelchair transport when my son's Mobility Allowance is withdrawn,
• fending off NHS and Social Services review of his care aimed at reducing their costs (but not ours), already mutterings that neither want to pay for his physio,
  
• filling the gaps planned by our County Council who've just announced cuts to day services, respite care and transport for disabled as well as massive reductions to learning disability support (plus charging for what's left).

Bracing ourselves for these things is already taking its toll. The stress levels are up, the paranoia climbs and the distrust of any official communication peaks. these days I dread getting brown envelopes. The cuts are going to be bad enough, but we also have to live with the anticipation of them - it's not generally understood how debilitating this is.

I don't want these cuts, we aren't responsible for them (and with bankers still getting big bonuses we aren't all in this together).

My son can't speak, he needs oxygen, airway suction, pump feeding and a wheelchair but he's going to have to pay for this. And yes I do feel bitter.

One month before Heartbreak

The Broken of Britain website is doing a 'blogswarm' from 14th to 16th Jan. to draw attention to the cuts. I've never seen one of these before but if it raises awareness of what is happening to the disabled at the moment, I'll be taking part - not sure how yet. If you want to know more about 'One month before Heartbreak' the website is http://thebrokenofbritain.blogspot.com/2010/12/announcing-one-month-before-heartbreak.html - just scroll down a bit. Looks like one way it might be possible for people who can't do demonstrations - too ill, disabled or with caring responsibilities, can make their voices heard.

The name refers to the fact that the consultation on cutting DLA ends on Valentines Day.

From meetings to checklists

Lots of meetings. Care package reviews (cutting rooms), Learning Disability(so called) Partnership Boards, MP's surgery (most sympathetic so far - but out of government - confirms that Mobility Allowance cut is now law), etc. etc. Meanwhile the 'review assessment' plods on (honest it's not about cuts, we're just assessing his needs - it's just a coincidence that Social Services have just announced 26% cuts to adult care). Lots of health and Social Work time devoted to assessment and 'observation', none to actual social work or his care.

I'm getting beyond cynical about these cuts - I know it is affecting everyone but the sheer amount of effort going into it makes it feel like persecution. Anyone would think we were bankers the way we're made to feel guilty for needing care/support.

On top of this, his main care provider seems to be retreating into a 'doing everything by the book' bunker. Person centered is giving way to standardisation on all fronts - how he gets his spending money dispensed, how his emergency medicines are organised, etc.. And none of this is for his benefit - it's all so that they can prove they do it the same way for everyone, whether it works for him or not. I can only think they are terrified of CQC or the commissioning authority finding something that doesn't fit their checklist.

This isn't progress - it's degeneration. Paperwork has become more critical than care, checklists have replaced humanity. Being seen to do things is more important than doing them and it's for the benefit of the 'care police' not the person with a disability any more.

This rant will almost certainly continue - things don't look like getting better any time soon.

Immobility Allowance

We went to see our MP about the governments Spending Review withdrawal of Mobility Allowance from people in registered care - our son and lots of others, particularly those with complex care needs and learning disabilities. He was very sympathetic and personally disagreed with it, but as he's in opposition now, can't do much about it. Apparently it is now law and will come into force on the due date when everyone has forgotten about it. We've had quite a few people saying to us that it was just a proposal and they'd never go through with it. They have. The term in the Spending Review was 'equalised' - 'equalised' to zero.

I'll put up chapter and verse, and which MPs voted it through once I've got the details, but basically it's all the Conservatives supported by the bulk of the Lib Dems - though I suspect many of them aren't fully aware of what they've done.

So we'll have to budget for £50 a week off my sons already meagre benefits - he gets very little e.g. no Income Support as he's classed as in a nursing home most of the time. He can't actually have a real life without his adapted van, so we'll have to find a way to pay for it out of our pension. We're certainly 'in it' but it doesn't feel like 'We're all in it together'.

Storm clouds gathering

Met with Health and Social Services - all very polite and interested. Seemed like nice people - stressed that they were there simply to review his care needs not to cut his services. I'm sure it's true - but I'd asked their boss x2 levels up the heirarchy why they were having the review and he made no bones about telling me that our sons was an expensive package of care (he's expensive because his needs are complex) - that's why they're looking at it. It's not what the people who we met say that I'm worried about - it's what their bosses will do with the information afterwards when we're not there.
Anyway, they proceeded to look at my son for a good five minutes, and then sat down and had a two hour meeting ticking boxes on their forms without him - I think that says most of what I'm worried about. Can't do anything more about it until we get a reaction, except worry. (Just incidentally - we asked about not having had a carers assessment. They said they had carried one out but hadn't seen any need to tell us about the outcome - so much for nothing about me without me.)
They now know a lot about my son - but understand nothing. They care a lot - not about him but about how much he's costing.
This feels like the lull before the storm.

Meanwhile in the real world, our service provider has already told us we won't be getting nurses when he's with us any more, - they need to be seen to be making savings. They insist on nurses when he's with them, CQC insists on that as they are regulated. As CQC don't regulate family carers, they don't need to provide them when he's with us - he's the same person - he doesn't suddenly get better or easier to deal with when he comes into our house. (but we don't get paid, so we're a lower form of less valuable life.)
If it looks like a cut, and it feels like a cut - I'd go so far as to say it is a cut.

So it begins

Yesterday we had a meeting with one of our service providers. My wife cried, I got very angry.

They've decided to not provide nurses when our son is at home any more - apparently nurses are needed when he's in their care but care assistants are good enough when he's with us. (and it's cheaper)
Tomorrow we meet with Social Services and the Health Authority - the council, who run Social Services here are rate capped and the local NHS Trust is looking for 30% cuts. Our sons care package has been selected for 'review' because it's expensive - and we've been told to expect this to happen every year from now on.

Right now it feels like we're getting a good kicking and being told to apologise for objecting.

The sound of one scissor cutting

There's something going on, that we're not being told about. That's we here rather than people at large. Our son's care package is a complex 'shared care' arrangement where ourselves and x2 charities all do some of my son's care in a co-ordinated whole. It's jointly funded by Health and Social Services - or at least no one told me anything had changed. But we've just heard on the grapevine - no official contact - that someone at the Health Authority is instituting a re-assessment of his care (no change of circumstances have prompted this) with a view to bringing it all under 'continuing care' funding.

I don't know the full implications of this but I do know it will have an impact - e.g. Direct Payments and 'Personal Budgets' aren't applicable to NHS funded care - and 'continuing care' is NHS funded. On top of doing his care and sorting out the other issues, we'll now have to start looking up all the implications of 'continuing care' funding. I don't have time for this. And I'm really worried it's being instigated with a view to saving money and cutting services - especially as it seems to be happening behind our backs.

I'm starting to get perennially paranoid - but I think they really are out to get us.

Cutting those who can't fight back

It appears the Mobility Allowance cut applies to all people in 'residential care'. This is a major cut, £20 or £40 odd pounds a week per person. Lots of disabled people will lose their Motability adapted vehicles, some people use this for motorised wheelchairs as they can't self propel. One distressing aspect of this is that it was referred to briefly in George Osbornes statement - a passing comment referring to 'equalisation' which was only elaborated as a cut to Mobility Allowance about page 50 of the Treasury statement.

My request to write to MPs was not on my own son's behalf, though it does affect him. It was to stop this being enacted for all disabled people getting Mobility Allowance in 'residential care' - this is a standard care model for many disabled people living in the community - particularly multiply disabled, people with complex care needs and learning disabilities. These people often get only £20 a week 'spending money' because their care is paid for. Mobility Allowance allows them some independence - until this takes effect.