Thursday, 18 April 2013

On the Right Track

Leisure activities, especially weekends away, when you're disabled turn into a military exercise as everything has to be organised. I've just returned from a long weekend away in Keighley, West Yorkshire visiting a friend. I say "I" but to facilitate the trip I needed to take my PA, which is the first difference from able-bodied travellers. We decided to travel by train and to be honest it wasn't that expensive apart from having the extra expense of a taxi journey between Waterloo and Kings Cross. Our tickets did include the underground but when you have a balance issue due to Cerebral Palsy, travelling up and down steep escalators and on and off trains in dense crowds becomes human Russian roulette. As it was, I definitely would've struggled making the journey on my own. That may sound wimpish but the combination of speech and mobility impairments makes travelling on public transport quite a headache.

Anyway, the journey was quite an adventure. I decided for the purposes of modesty I wouldn't drink fluid on both journeys so I wouldn't need to use the toilet on route. This sounds really silly but trains move and therefore contending with a moving train with an ungainly walk and very little balance is tricky if not a danger to getting injured or worse. Apart from a bit of aggression on the way up
on the London to Leeds leg of the trip, our original train got cancelled and we were put on the next one, which meant the reserved seating system now had two passengers to one seat. Don't individuals get precious over such trivial matters - a seat is a seat or perhaps I'm missing the point?

The accessible room in the hotel was okay. I think I would've struggled as a wheelchair user however, there were adaptations such as a half sink in the bathroom but there was no surface alongside the sink to keep your toothbrush etc., but for a couple of days stay it was manageable. What amazed me was the people, not just hotel staff but the people in general were friendlier, on several occasions people offered help or conversation and not in an awkward way either. Generally in my experience in the south people make out that they are too busy, rushing everywhere, heaven forbid making eye contact with others and if you happen to have a disability then people avoid making any contact at all. And yet here we were, strangers and southerners and I felt not "a burden" but instead a sense of community, that sounds terribly dramatic but after forty odd years of community isolation it is important to me.

I'm an ordinary guy who happens to be disabled, the media and some government rhetoric have painted this blanket picture that all disabled people are "scroungers", benefit kings and queens that stay at home and bleed the state dry. In fact lots of severely disabled people like me do work, often for low incomes so yes we need state help but purely as a top up. This was my first independent trip in four years; my parents take the family away once a year so I do get a break, so I'm lucky. The reason why I'm saying this is currently the view of disabled people is one of we don't work, we live on benefits and we're quite happy to do so, but this is not always the case. In actual fact, some of us do work, some of us don't like benefits, and we try to go about as independently as possible and even enjoy a social life! For me, my short break planning was trickier because I needed to take a PA which meant the cost increased and more importantly we had to get on! J

Tuesday, 19 February 2013

Are we in danger of taking the “expert by experience” tag too far?

Two words have recently crept into our sector vocabulary, co-production and user led. This is where I have to be quite clever and tread carefully, as business wise it takes years to build a reputation and a matter of seconds to destroy it. A lot of disabled professionals similar to me suggest that future service development of personalisation should be with 90% if not 100% designed by disabled architects. I admittedly struggle with this notion, in fact, this view reminds me of George Orwell's famous novel "Animal Farm" with its "4 legs good, 2 legs bad' quotation. I believe disabled people have a unique perspective on potential improvements to services but I don't think we have all the answers.

My belief in joint problem solving is so strong it's the sole inspiration behind setting up my organisation All Inclusive CIC, because I think solutions come from many views, so using the tried and tested concept of partnership working, maybe quite an old fashioned idea but an effective resource. In my opinion, this will create strong dynamic user led organisations that have effective and efficient services for disabled people. It depends very much on the definition of "service user" that we use. Many disabled people like to think when discussing disability services it refers to them. I however take a more global view of surely a service user is anyone directly affected by the service, such as parents, partners/loved ones or PAs'/carers. If this is the case services have to be designed creatively benefiting all parties.

No-one, least of all me is denying having a disability helps when building support services to allow disabled people to function as an equal citizen, but is that enough? To be successful in my field you cannot dismiss the achievements of the Independent Living movement and their success in changing legislation and attitudes. Conversely there have been many, many able-bodied pioneers and entrepreneurs that have helped to change the disability landscape for the better. Currently we sit on the edge of opportunity, this could, if handled correctly be a way of streamlining aspects of social care and possibly create jobs for disabled people. I say the second point with a large slice of reservation for two reasons:

1, setting up businesses to service areas that historically have had little financial resource is fraught with danger.

2, having experienced business minds within the disabled community to be truly user led is difficult because we lack senior management experience and that is a fact.

Are user led services the path to utopia? I am not over confident it is, but because I think partnership working works I have a natural affinity with the ideas of co-production and service user involvement as a way forward. Both concepts take their strength from taking direction from all stakeholders rather than taking a specific point of view. Personalisation is about putting disabled people at the centre of their lives and not necessarily saying they are the only "experts". For disabled people to have equality in all aspects of life, everyone must share the burden and elation of building the future path. Social care should be a supportive hand not a bottomless drain on finances.

Money, I know a disabled person complaining about money, nothing new right? Well like it or not social care is failing, demand is out stripping supply and the financial resources needed to keep the system going, it's becoming immense. If we want creative thinkers to redesign the system to increase levels of independence of our disabled and elderly people, we need to address the financial resourcing to act as an incentive. I know this is a capitalist view to a social problem but we need to act and act now before standards get worse.

In conclusion then the phrase "service user" has to be bigger than the disabled community to be affective. User led services are the way forward but we need to open our hearts to collaboration, co-production if you like. Even though we all accept profit and care does not mix, we can take on board that capitalist principles have a place and models like co-operatives have an important place in the future. I know as a disabled person that we still have many inequalities but let's not turn the future into George Orwell's fiction, let us be pragmatists and work alongside our able-bodied counterparts and show them how working in partnership is the way to achieve success.

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.