Thursday, 11 October 2012

Are We Self Directed?

Last week I did a workshop at a conference around building personal networks (as in care networks), this coincided with Hampshire County Council re-launching or repackaging personalisation. Apart from getting splinters from scratching my head this is deeply concerning, the theory of being in control of one's own care is exciting even revolutionary, the reality is scary, mind boggling with far too many caveats and pitfalls. A large percentage of disabled people don't work and we give them a direct payment and turn them into employers with all the fun that goes with it.
Personalisation is the way forward but we need to remove the big 'P', ('P' for politics). When In Control proved giving disabled people direct control of their financial care packages lead to more efficient and effective use of their care money, personalisation was born. This excited the disabled equality consultants and professionals as we thought we had the mechanism to revolutionise the care system. Then politicians got involved the people that promise the world, and deliver a town lol. Yes, they brought in the appropriate legislation to make it happen but the flavour was soured as person-centred was secondary to finance. The RAS dictates the hours an individual is entitled to.
From a personal point of view the freedom to be able to employ PA's/carers to enable me to live the life I choose is a powerful one but again, the rates of pay I can offer is dictated by the local social services which seem to value care underneath working in a supermarket which is interesting if they want to drive up care standards, they're really not enticing those sort of people into the market place. Can I have a sentence on tax? Now unless you're an employer, the HMRC becomes a mystery and lots of disabled people will fall foul of the system, for instance, there is a 9% levy called Employers Tax which has to be paid by the employer – well if you don't take it off the hourly rate before you offer it to the PA it's going to come out of your personal pocket, lots of people don't know that. So the personalisation system has flaws that unless we address it will never work as a concept. Another concern for me, cos I've been caught three times by people who I've trusted is policing the system. CQC can't police the current system properly without scandals coming to light. How are they going to police individuals within the care system? Do we need to look at the licensing of PA's?
So are we yet self-directed? I don't think we are. There are a band of disabled people that make the best of the current system but there are so many unsupported areas that councils around the country either haven't considered or are simply shutting their eyes too. It's just a worry. My suspicion is this will never quite work properly because there seems to be a large difference of understanding between social services, politicians and disabled people. At the moment this is evident in the current round of benefit reviews and assessing disabled people on their disabilities, this is becoming a common rant for me that I still can't fathom. They have a solution that will cut the care bill dramatically as in personalisation, why do they decide to muck about with it. I personally have found personalisation to be to my benefit, well, that is until they start cutting my package if deemed too expensive. Therefore I am self-directed.

Thursday, 13 September 2012

Will the spotlight remain on disability?

I want to congratulate Channel 4 not only for their comprehensive coverage of the Paralympics that has rivalled the BBC's coverage of the Olympics, but also the support programming that has possibly challenged some with the black humour. Channel 4 has really displayed an inner concept by making sure most of the commentators have a physical disability, but Claire Balding, Iwan Thomas and other iconic sports stars must also be commended for the passion they have for disabled sport. For me as a Disability Equality Consultant it does raise more questions. Will the euphoria remain long after the games? Has the general public understood that disability really doesn't change the human spirit? And, does the general public realise that not all disabled people can or want to be elite sports men and women?

"Super-humans" is the new marketing branding to describe Richard Whitehead's, Ellie Simmonds and the rest of Paralympians in Team GB, fantastic, but I'm mindful of the millions of disabled people in this country who won't be elite sports men and women, me included. I'm too old, swim like a brick and run as if I've been on a very heavy boys' night out. Does this mean I am a failed "Super Human", I love being involved in sport even at 41 years old, but at best it's a hobby I'm no less competitive than a counterpart half my age but I have limits. More important to me is earning a living, supporting dependants and going to a restaurant and having a meal without feeling I'm in a goldfish bowel.

Have I "sour grapes" because other disabled people are getting the plaudits and superstardom I think I want? Like thousands and thousands I have watched the games and celebrated the successes and rejoice that disabled sports people are now stars, that's equality at its finest point. My job with others is at the mucky end working towards organisations understanding the principle of co-production, having disability services developed in true consultation with disabled users. What I will find interesting is how many Team GB medal winners will find it will work against them in their Disability Living Allowance assessments. Another contrived piece of governmental bureaucracy, "we want to weed out benefit cheats!" Newsflash benefit cheats will beat the system because they are dishonest, sure some will be caught but not many. Those of us born with disabilities that won't drastically improve find this assessment pill hard to swallow. For me where I have crash landed so much as a kid falling off bikes, taking pearlers just walking from A to B and sports injuries my joints have gone through hell and are now beginning to cease. So the joys of age are upon me I will lose mobility and get worse, simple fact.

As an equality trainer the biggest impact will be the children who have witnessed disabled sport in the last 11 days, who caught in the action have forgotten the missing limbs, the blindness and the people that wobble and have been swept up by exhilaration, passion and the desire to win.

From my perspective disability is all about ability first. We get caught up in the marketing spin of "Super-humans" etc. for me, the legacy of the Paralympics must be the change in media perspective, possibly we can lose this scroungers tag and reduce disabled hate-crime which has increased year upon year for the last six years. Come on guys, how can you hate a wobbly man? Channel 4 now produce some interesting inspiring thought provoking documentaries about different aspects of disability which I think helps people understand. My question still remains, will the spotlight still be on us in 12 months' time? All I can say is, I hope so.

Thursday, 16 August 2012

Flag of Independence

On a week where Lord Morris (a well-known disability campaigner and law changer) has died; Tony Nicklinson with locked-in syndrome from a stroke in 2005 lost his high court case for the right to have assistance to die and the government having a mini U-turn on social care cos they're now thinking about using a capped figure. With disability being in the news it's brought to mind the importance of independent living. Disabled people have spent years trying to live in the community just like everyone else; it's a shame that this coalition government seems set on destroying this objective.


Living on your own is not easy when you have a disability, granted. Couple of weeks ago my smoke detector developed a fault. The detector is wired into the mains and decided it would go off every 10 minutes, it just so happened this was between 11pm and 10am - until my Dad came round with a step ladder to remove the offending item and put it in the garden shed! Now, if you can imagine, I'm 5' 2" and wobbly with coordination challenges (!) attacking the smoke detector with a broom handle (trying to hit the off button). Suffering with sleep deprivation the attacks were getting angrier as the hours passed. In this case you could say disabled people should be safely put into sheltered accommodation where they can get cared for. Now fully recovered from lack of sleep I would disagree. It's been entertaining for friends and family to hear this story, I'm sure if and when I have grandchildren it will become folk lore.


We all realise that disabled people living within the community is difficult but with the personalisation strategy in theory this should become easier. However, government tends to meddle with what works perfectly well and the money directed towards making disabled people's lives easier seems to dwindle, this is from a government who have stated repeatedly that they would protect the most vulnerable in society. Charities seem to be disappearing every single day so assistance for the old and disabled are being affected; the benefit system review has to my mind attacked disabled people despite being told this is to catch benefit cheats. Surely it takes little intelligence to work out that if you're a professional benefit cheat you would work out the new rules and find ways around them but is that me thinking too simplistically?


I read that people on disability living allowance will have to undergo assessments. This amuses me as for people like me born with a disability, such as cerebral palsy are not going to wake up one morning and be cured! So I'm going to have some doctor with a list of questions and no doubt hidden criteria, see me for 20 mins and assess in that time my life history and whether I DESERVE Disability Living Allowance. I wonder how many other groups in society actually go through these harrowing ordeals. Of course I've just realised the media who are whiter than white have painted the disability community as benefit hanger oners, they seem to forget that many of us have jobs, families, vocations just like well, everyone else, funny that 'init? Am I angry, yeah, I am! I feel because the country is in financial meltdown they pick on the weakest, if we just stopped and looked at how we could use the skills disabled people have maybe the economy would pick up, also having disabled people living in ordinary houses in ordinary streets allows children to see how boring and ordinary we are and we start to lose discrimination.

Thursday, 19 July 2012

Social Care Black Hole

I feel compelled to write my angst again about social care with the announcement of the new Draft Social Care Bill this week. My question with all this is where the hell are we going? We seem to have a government which is freely admitting that the social care bill in times of finances the country won't be able to cover within the next decade. We have care agencies and care providers more interested in profit than they are delivering a quality service. We have local authorities putting disabled people on to direct payments without training them in how to become employers. Hampshire, I'm sure they're not the only authority, have taken away the direct payment advice service and replaced it with a website. Call me old fashioned, but if I have a query on direct payments whether that be employment law or employment contracts I like to talk to a person, not sit in front of a computer screen.

To me this all seems a complete mess with no solution. We all agree that direct payments and individual budgets seem to be the right way forward but are they if training is not being provided? For example how many of you realise that on wages there is a 9% contribution by the employer through PAYE? Now, if you're a lucky chap, you're PA's are self-employed and this really doesn't affect you, but what seems to be occurring is disabled people are getting there direct payment of £10.53 per hour (Hampshire rate) and assuming they can pass it all on to the PA through PAYE and getting in a right mess with HMRC.

Local authorities need to wake up to the fact that disabled people need specific training around employing people, not just on the financials but around general employment contracts, how to go through disciplinary processes and general employment knowledge. I'm fortunate because I run my own business so some of this knowledge I've already gained.

Care agencies are my bugbear. I realise I can't tar every domiciliary care agency with the same brush but in general they have both eyes on the profit margin. Training, well, doesn't happen or it happens to the minimum standard they can get away with. They pay minimum wages and overwork their employees and the rota's don't allow for travel time between calls, there's an assumption that carers can teleport! Finally, I've told you what Hampshire pay and most agencies charge between £12-£15 per hour, which usually goes up at weekends. So we've got this riddle where I get so much an hour which is below the going rate.

So social care is in a real hiatus and nobody seems to have come up with a solution. Owners of care homes and agencies seem to be getting richer and the regulatory body that oversees the care profession has no teeth and recently has been shown to miss diabolical care practices. We have a government who won't put a figure on social care and quite rightly have been criticised on how they can produce a bill with the most important bit missing. We have local authorities putting disabled people on direct payments because it's cheaper without proper training or checks. I am so pleased that I'm disabled, what's going to happen?!?!

Thursday, 21 June 2012

Who Is Going to Pay?

The Government has spent the first half of their term in power "over-hauling" the social security and benefits system and before Parliament breaks for the summer holiday it will have the first reading of the new Social Care Bill. Now, I agree that the system needed looking at, but I must comment that disabled people seem to have become the main method for CLAWING BACK public monies. "We want more disabled people in work, contributing equally". REALLY? This seems now that this is standard reterick by successive governments without creative policies to make it happen. I work, in fact I went one stage further than being employed, I started my own company. With Cerebral Palsy and a severe speech impairment to fit into current business models of sales or call centres it's like putting a square peg in a round hole. I like the challenge but it now feels the equal playing field is so steep its hard work.


Yeah, I hear you, "another disabled person belly aching about fairness". If only it was that simplistic. To start with this government has "got rid of" the Independent Living Fund (ILF) the vehicle that a lot of severely disabled people have been able to employ personal assistants to assist them living independently, work for a living and enjoy a social life. "Yes but its tax payer's money", I hear you cry. The reality is keeping people in residential care costs lots more and local communities don't benefit from disabled people contributing. I will talk directly to your pockets which are already under attack from rising prices, taxation and a general increase in the price of living. ILF is not open to new cases therefore those who would have been funded by ILF are now the direct responsibility of local authorities. Now, central government have reduced the amount of money they provide Local Authorities to run services. So the local authority has a duty of care and therefore the only option is to raise council tax that means you get even more taxation and disabled people feel an even bigger burden on their community, happy faces all around don't you think!


Then we have Disabled Working Tax Credits a system designed to assist disabled people who work and are on low incomes. Boy! What a system! It is not the most user friendly system and recently they have tinkered with the rules. The theory is good but believe me the stress it can and does cause can be phenomenal.


Disabled People will always cost the State money by varying degrees and people are now living longer so this combination will drive up the cost of social care in the UK considerably in the future. Question: would anyone put a sticking plaster on a leak in a dam? If you truly want those disabled people who can contribute to the workforce to do so we have to be radical. Impairments and disabilities by their very nature means the contribution will not always be equal. So why not have a top up system, work out what the individual needs in income to sustain an independent life. Have Direct Payments, PIPS (Disability Living Allowance) and Access to Work cover the support and specialised equipment needs. Encourage the thought of jobs and careers through the idea of the welfare system being there to top up whatever work income you earn to the predetermined minimum level. In real terms the tax credits and the array of other disability benefits are then used as income back up. This system will truly be a safety net and the more that you earn the less welfare state help you need. This system would also work for other groups such as single mothers. To me, this seems a logical solution that will lower the welfare state benefits budget therefore opening up extra income to put towards the growing social care bill.

Thursday, 7 June 2012

Could I have some help please?

As a Disability Equality Trainer, I'm bemused by high street businesses. As a small business leader I come into contact with other small to medium business leaders and I suggest to them that I could add extra value to their businesses by delivering my disability awareness training. The reaction is fairly standard now, such as "that's a great idea but we cover that in our inductions". This is where my confusion lies, if this was the case I could walk into any shop or service provider and not be confronted by physical barriers i.e. steps, not cause a panic amongst the staff or be faced with blank faces or just sheer terror! I could speak and be understood or people would at least take the time to understand my needs. So what training are these people getting? Is it from the internet or is it just a sentence in the staff handbook which ticks the box?
In October I will be launching a 3-hour workshop on how to improve service for disabled customers. What a lot of people don't realise is one in five people has an impairment of some description. Whilst we find ourselves in this economic mess, can we really afford to ignore 20% of our customer base? Some of you who are following my blog may think where's the comedy gone? I'm afraid after 41 years daily struggles with getting petrol, getting a paper and shopping in general, the funny side has slowly ebbed away.
The other week as I live in a housing association flat my boiler had its annual test (just in case I'm poisoning myself with carbon monoxide!) Same old story, guy arrives and I'm faced with the ritual of being shouted at. Perhaps he thought I was deaf as I did have my stereo blaring whilst I was working on the computer in another room. More than likely though he confused my speech with having a learning disability and somehow people think shouting makes communication better. I'll tell you a secret, it actually makes you sound stupid and it's pretty annoying. So I'm stood in my kitchen thinking I'm a 41 year old man running my own business and this guy is assuming all the worst things about my disability. You can't tell me disability equality is being taken seriously although society is getting beginning to embrace disabilities it just seems it's at a pace of a slow slug. The point of this story is to demonstrate the need for a societal or culture change rather than picking on individuals, the guy in this case obviously thought he was doing the right thing, unfortunately though he was just simply unaware.
This post is meant to inspire the business people reading it to sign up to my workshop in October. I don't know if it will work, we shall have to wait and see.
If you are interested in the 3-hour workshop or know of anybody else, including businesses and organisation I can be contacted on
Until the next time ……. Goodbye J

Thursday, 31 May 2012

Don’t Bank on it

Just to remind people I have a speech impairment and poor co-ordination so I find banking in this day and age almost impossible to do on my own. Let's take it one step at a time.
Cash machines: the invention for instant cash – I have more chance of sticking my finger in my ear than I have of sticking my cash card in the slot, let alone trying to hit the right combination of buttons. Instant cash? Instant disaster! So my cash card has now been swallowed by the hole in the wall so I phone the call centre to report this ……
Bank call centre: the world's worst invention for a guy who speaks like Chewbacca! First of all you get the menu, you know, "hit 1 for this, 2 for that" Hitting the numbers in the right order to start with is a gamble for me. If I get pass this, a voice comes on the end of the phone saying "can I help you" and that's when the fun really starts. You can't use personal assistance 'cos oh no, customers services can't talk to anyone unauthorised, even if they're sitting on your lap. So I try to express verbally what I would like. "My card has been swallowed by your cash point machine, can I have a new one please?" (simple enough if you speak chewbaccan). So we have a fun 20-minute conversation with me repeating the same sentence in several different ways and them saying "sorry but I can't understand you". It ends up with "you'll have to go into your branch and sort this out", which is code for can't understand ….. getting really embarrassed ….. so I need to get rid of you.
Chip and Pin: who's ridiculous idea was this? The banks all said when they first came out, we've consulted with our customers and this is what they want. Obviously they didn't speak to customers with co-ordination impairments, the last thing we want when going for a meal is to play 'press the right button' on the portable card reader machine. So what do we do? We have to tell partners, friends, the waiter(!) our pin number. Now that's really secure! So I have a choice, I can carry a wad of money in my pocket which leaves me open to being mugged or carry a chip and pin card with no security 'cos I've got to tell people my pin number when I pay for things. So thanks Mr Banker, I really feel consulted on this.
I've covered these topics in a rather jokey manner; this is to cover up my complete frustration. The whole point of technology is to enable greater independence but as you can read the banks have made me more dependent on others by having systems with no other options. What I'm trying to get across is, think about what you're doing and think about the customer base. One person in five has some sort of impairment, don't marginalise them. Speak to us. We can help with solutions that will work for everybody.
PS. I hope Chewbacca's not insulted J

Monday, 28 May 2012

Importance of Independence

As I continually stagger through life, sometimes physically as well as in experiencing life, I have a constant reminder that society is a constant uphill climb. Now, before you think this is another disabled "it's not fair" moan, think again. I live with the belief that if I want to be accepted I don't complain – I just get on with it. But, come on guys, cut me some slack! Yes, I have a speech impairment, and yeah I understand that I may sound like the Swedish Chief from The Muppets, but does that equal that I must have a learning disability? Please! If I used the same attitude with people with bad dress sense, well, there would be lots of unhappy people, men especially! And why shout at me? It seriously doesn't make words penetrate easier you know! Professionally, I have a Personal Assistant who, gamely, interprets my speech for others to understand. But again, I don't go around with a PA in my pocket! And, nor do I want to!
Disabled tax credits! I had the impression this was a system meant to ease disabled people into work. It's a real mine field and it's questionable whether it's a help or, indeed, a hindrance. The Government seem to be "reviewing" all disability benefits, saying that there are many that cheat the system. The latest thinking is that everyone on Disability Living Allowance will have to be re-assessed. I'm not being funny guys, but I have Cerebral Palsy, and with the best will in the world, I won't wake up one morning to find it has disappeared! So, what are they assessing me on?
People in my profession want to encourage as many disabled people as possible to be included within local communities. We promote working, independent living and the general use of services and facilities that everyone else uses. But, I can see why disabled people are reluctant to put their heads above the parapet, in case they get knocked off! Social care is going to be expensive and will continue to increase as we, as a society, live longer. We need to be creative in resources, but also, thinking. Stop penalising disabled people purely because it saves money. Use The Big Society to create better services and structure for social care to happen.

Thursday, 17 May 2012

Day One

Hello, this is my first go at Blogging.

In terms of disability we are in a very important phase. The government has decided in its wisdom to make all disabled people claiming Disability Living Allowance to be reassessed. At the end of the month the Social Care White Paper has been promised to be published which will give solutions on how care in the community will be delivered to the disabled and elderly. In theory, the net effect of these two events is big changes. The irony is, whilst I partly agree the need to reassess people for benefits I do have trouble getting my head around the idea that one day I will wake up one morning and not have CP and therefore not be entitled to DLA. You would have thought some thinking would have taken place so they reassess cases where disability has been a recent thing i.e. people with back injuries, but there you go.

My Blog will be factual but humorous (hopefully!) I do have a unique take on life as a disabled person, so please don't be offended if some of the humour is disabled based. Life with cerebral palsy is very interesting, humorous and frustrating if you want it to be. For instance a few weeks ago I was brushing my teeth, merrily minding my own business, standing in my bathroom in my underpants using my electric toothbrush. All of a sudden the head from the top of the toothbrush came off and wedged itself in-between my gum and cheek. The automatic reaction is to take the offending item from your mouth, fine if you've got perfect co-ordination. So in my mild panic I accidently swallowed feeling the toothbrush head disappearing down my throat. The immediate thought is not "Oh my God I'm going to die!" but "Oh my God I'm in my underpants so someone's going to discover me in a state of undress if I pass out". Thankfully I swallowed said toothbrush head without choking and when my PA came to do my breakfast and my shave I asked her what I should do. When I picked her up off the floor because she was laughing so much (once she realised I was actually ok) we phoned NHS Direct who advised to go immediately to A & E. I think this happened so I could entertain the hospital staff!

Why am I telling you this? I suppose it illustrates that disabled people have to go through embarrassing situations just to survive everyday life. Luckily I have a great relationship with my team of Personal Assistants who 'get me' and we all end up laughing together, but many disabled people don't have that fortune and live in residential care with staff who really are overworked and underpaid. The government needs to understand our situation and not keep punishing disabled people for being disabled.