Pilot scheme to allow you to buy or build a powerchair

[Burgerman]

Hi John – good to hear from you – in short the pilot finished and the outcomes for other wheelchair users were not good so it didn’t get implemented. The Wheelchair department was reorganised too, which didn’t help any. The rest of the NHS was reorganised too, and that helped less.

The outcome for yourself was good though, so I will see what we can do. It may take a bit of time though – and I can offer no promises.

THIS was the result of the pilot scheme for initially just 1 that I was on, later expanded. Starting exactly 3 years back. It paid for me to maintain the chairs I was using for 3 years, and build my new BM3 chair as well. Instead of using the incompetent wheelchair services.

Works great for me,

Wonder what went wrong for the others?
Anyway as you can see you are all now screwed...

[Irving]

Does that mean you're not going to be allowed to continue... or you'll remain the one exception?

[Burgerman]

The guy I am in contact with runs this areas funding for care etc. He says I will probably continue as I am, but it will be a week or two before he can sort out the money.

It means however that all the rest of you are screwed. Would love to know why. Will find out!

[Irving]

The guy I am in contact with runs this areas funding for care etc. He says I will probably continue as I am, but it will be a week or two before he can sort out the money.

It means however that all the rest of you are screwed. Would love to know why. Will find out!

Only until we manage to negotiate our own arrangements

[Sully]

This is very interesting, it sort of follows a conversation we had on a different forum. These people who control personal activities with money like you and your chair really do not like to relinquish that control. If the recipient does not have a strong enough personality or is able to drive these controlling people with technically perfect explaination, and strong enough not to even permit them ( the controling people) some way of refuting their chair's abilities, (how it is so superior) then they are lost. That is a skill in itself, and not too many folks have that skill. When you get the story of these people, "I" think you will find out this was their problem.

John your credentials are strong enough to back the words you utter. And though I have no clue how you present yourself in public and in a questioning situation just how strong your personality is. Without personally knowing you, it is my belief you also have what "I" believe a good or better set of records and documentation that explains the chair and its superior abilities. I have personally written for grant dollars, the more I actually knew about the subject of my request, the easier the grant dollars rolled in. And exampliary records on how it was spent, as well as the final result, is passed on to other Agencies when you try to do the same thing again. Success breeds success.

[Burgerman]

The point of the scheme though wasn't to use the money to build yourself a better chair, but to take the whole wheelchair assessment, choice of solution, seating, new, used, or indoor/outdoor thing out of their hands and let the end user make the decisions about how best to spend the money.

So that instead of a cheap crappy slow indoor based chair that they say you would "get free" for e.g., you can choose to buy 2 used Magic Mobility X5 chairs and a winch for your truck if this suits you better. It allows you to maintain them as you choose, using your skills, and preferred solutions rather than theirs. Maybe a tank chair if you live on a farm... You would put some of your cash towards it if needed.

It allows you a budget that helps your mobility to use however you see fit rather than their fixed basic solution. You can make this money work better for you giving a more efficient solution for each case. FLEXIBILITY is the key. I personally chose to build my own.

It also giver the USER the buying power, meaning the guy selling the more advanced lithium powered fast chair gets a sale. The guy selling the overpriced lead brick rust-a-lot chair gets no sale. It drives development. It allows CHOICE! We already have some of this now. My pilot scheme just went further. The US way stagnates it. It removes the capitalism that drives the development.

[Burgerman]

And though I have no clue how you present yourself in public and in a questioning situation just how strong your personality is.

Very!

You wouldn't want to disagree or have a contrary opinion without all the facts and logic at your fingertips, because you will be made to look a fool in front of your piers very comprehensively.

I run only on reason, logic, and facts. I present them very carefully in the correct order and leave the opposition nowhere to hide. I think that after a few dealings with me they get a bit worried.

They either have no choice but to see it my way, or confused weak ones tell people I bully them. I don't, unless they call the facts and logic/reason "bullying".

They feel bullied because they don't like where it leads the argument! Because this argument makes them look stupid. If I wasn't right I wouldn't be in the argument in the first place. I also never get heated or insulting. Calm, accurate, and reasoned arguments with evidence is all it requires.

I love it when I get religious nuts banging on the door. I let them in, sit them down and listen. Right up till they make the first illogical unsupported claim. At which point we stop and retrace the conversation so they can see where it left the rails. And they have to explain how they "know" this. Can take hours. They get totally exasperated. I hand out the fossils I keep for this purpose off the fireplace to their children too while frustrating the "grown ups". Complete with all the carbon dating data, and a page of real info - all of which contradicts their brainwashing.

Its fun! Most try to escape/run away. But I had one that kept coming back on and off for years and was always hanging about until he realised it really was all bollocks. He now wears the noodly T shirt! The odd one *thinks*.

[Sully]

Quote; "It also giver the USER the buying power, meaning the guy selling the more advanced lithium powered fast chair gets a sale,'

Absolutely true, no arguement.

Quote; "My pilot scheme just went further. The US way stagnates it. It removes the capitalism that drives the development." Health Care is a form of Socialism, always has been always, will be, you cannot mix Socialism and Capitalism and come up with a good result. But you can work to find a tolerable solution, you are a unique case, as can be seen with the result of that temporary pilot program. One (1) winner, out of a field of (?) why?

Quote; "My pilot scheme just went further. The US way stagnates it. It removes the capitalism that drives the development".

Right again, what I tried to say, and qualify with the little I personally know. Unfortunately the check for payment comes from either the government or an Insurance Company as well. Again " You cannot mix Socialism and Capitalism and come up with a good result".

Look around, listen to some of the stories told especially on the Junkie site and explainations given by all too many of the offended or denied folks. Would you, if it were your money, give all of them 2000BP every three years to do with as they wish but relating to their mobility?

I only wish I was smart enough to come up with a realistic solution. But the folks with the final answer are the ones with the check book, or the courts. The laws made by Legislatures are trying to hit a very fast moving target, and they continually miss it.

What I do believe is you got where you are; on the strength of your personality, knowledge of your subject matter, and the ability to do what you say you will.

I am very sympathetic to the cause of Handicapped people, I am one. But I also can look and feel the frustrations of those folks who are expected to pick up the bill. Do you know of a 100% covered solution? Where one answer/solution covers all situations?

[Burgerman]

No.

But I feel someone should be assessed and given either the medical help, care and carers, or appliances like chairs and beds if they need them. OR take the same VALUE in £ that the government would have spent, and allow you to better manage this stuff yourself. It puts the control, and the buying power and the choices in the hands of those end users that know better than the agencies what will work best for them.

As such, we ALL have a right in this country now, to have:
Health Care.
Personal care budgets, To employ our own carers. As I do.
Personal health budgets. To cover a multitude of things like electric beds, surgical appliances, some medical care in the home etc, basically whatever you need to best live in the community with some self respect.
Personal social care budgets when going out if you need it etc.
Cleaning, domestic work budgets etc.

The wheelchair budget was just an extension of this. This all comes out of the NHS and Gov budgets. No insurance. Everyone is entitled.

Heres the thing. It works out CHEAPER than institutionalising everything, and allows disabled people more options, easier ability to work (another budget to help!) etc. Someone living and contributing and consuming in the society is actually an investment. Not a dead cost.

Everything is assessed on an individual needs basis.

[Burgerman]

Direct payments for Care http://www.nhs.uk/CarersDirect/guide/pr ... ments.aspx

Health http://www.personalhealthbudgets.england.nhs.uk/

[CPguy]

It’s said to read that the direct payment scheme has failed. However, as Sully has pointed out unfortunately a large number of disabled people are not willing and /or not capable to organize themselves. It is, however, paramount if the direct payment scheme is to succeed that the disabled people assume responsibility which – more often than not – they do not
In Austria one can see problem particularly well when it comes to the employment of “personal assistance” (PA).
Second there is the problem of information: most disabled people want a self-determined life (“nothing about us without us!”) however a large number have no idea what they want, what the world (or the market for that matter) has to offer and will subsequently never be taken seriously by the public. (Admittedly, I am not as tech-savvy and skilled as Burgerman but I have the opportunity to attend trade shows and attend training courses which I do to the largest extent possible.)

It reminds me of the poem “The Leader” by Roger McGough (November 9 - 1937 / Liverpool / England):
“The Leader

I wanna be the leader
I wanna be the leader
Can I be the leader?
Can I? I can?
Promise? Promise?
Yippee I'm the leader
I'm the leader

OK what shall we do?”

If you cannot answer this question a personal budget is bound to fail!

On an Austrian disability and self-advocacy website I wrote a few articles trying to give (a very brief and simplistic) market and technology overview for wheelchairs (in German) in an attempt to help fellow disabled people but the reaction was very negative (“We do not want this information…”) articles about parties and cup holders (!) were much more kindly received. I tried to help but I cannot change the world.

[popschief]

You can lead a human to knowledge but you can't make him think.

bp

[Burgerman]

email from pilot scheme guy...

John – just an update for you – Wheelchair Services are happy to do this again, it will mean a visit from them to review and make an offer again. BUT I need to reconfigure the mechanism to shift the money about through the system (which is far more complicated than it needs to be, and more complicated than before). I’m onto it though.

from CPguy above...

Second there is the problem of information: most disabled people want a self-determined life (“nothing about us without us!”) however a large number have no idea what they want, what the world (or the market for that matter) has to offer and will subsequently never be taken seriously by the public.

That's why the pilot failed. People WANT to be nannied and told what chair, seating, etc they want, and rely on someone else to sort it all out... Only later to complain loudly that its crap, and they really wanted xxx instead. So they really want my chair, or something like it, but don't want to bother themselves with learning whats out there and what will work for them. They want someone else to do all that for them.

Low on uptake because of the above, and many complaints that people needed to add their own cash for advanced faster/better chairs, extras etc. They totally missed that this is added flexibility that they now cannot have even if they WANT to put some towards it! Retards. And they don't understand that they can buy cheaper if they put in the effort.

[FourLions]

Hi John – good to hear from you – in short the pilot finished and the outcomes for other wheelchair users were not good so it didn’t get implemented. The Wheelchair department was reorganised too, which didn’t help any. The rest of the NHS was reorganised too, and that helped less.

The outcome for yourself was good though, so I will see what we can do. It may take a bit of time though – and I can offer no promises.

THIS was the result of the pilot scheme for initially just 1 that I was on, later expanded. Starting exactly 3 years back. It paid for me to maintain the chairs I was using for 3 years, and build my new BM3 chair as well. Instead of using the incompetent wheelchair services.

Works great for me,

Wonder what went wrong for the others?
Anyway as you can see you are all now screwed...

wheelchair services ours not to good in stockport my brother bout me my otto bock B600 a fue years ago lol

[Sully]

So John,

I am going to lambasted for this one; Basicly what you are saying is, laziness and stupidity run rampant on both sides of the big pond in pretty much equal proportions.

I do have to ask you, the first day you woke up after your accident, were you prepared to take over all your mobility needs ? Probably not huh. Some folks will never be prepared to administer their own care, now not physically, but mentally. Understanding every single person's situation is different in some way, both physically and mentally.

I live near a huge US Marine Base here, I see many young folks who have come home with huge physical problems, I cannot see the mental ones, but I do assume those with these kids with missing limbs, have some mental adjustments to make as well. Where will they (first) and we (secondary) find the where with all, to support them later in life. The USA is not alone with this problem, you guy have a lot of great young folks in the same situation.

I first got the bends in 1962, then again in 1973, the effects were progressive over the years. I worked until I was 65 years old, US Retirement age, but making self modifications "work wise physically and of course mentally" continuously during those years. By age 70 I was falling with regularity, so rather than beg for a wheelchair I bought a used one, I tried a manual one (nfg) and now at 75 I am not satisfied with even the mobility of a power chair. I do want more, but "I" will do it. And it is why I follow and try to contribute to this site. My point is I think I can imagine what these young folks will face similar situations. Each will handle it different, time (age) and the bureaucracy's wearing them down, until they succumb and become complaicent.

I do not know how GB handles their Wounded Warriors, but as time goes by the promises made ten years ago right to today will slowly fade from the minds of the later generations. I have lived it and it will be repeated time and time again. And if I had it to do again I would make the same choices, the aftermaths might have been different.

I now have to wonder how these rather inept boards are going to handle you military wounded and all but destroyed bodies, when they start to show up at their door. Perhaps it is time for a John Williamson and others to step up and see to it the program you started becomes a part of their future. You seem to have the strong personality and professional knowlege to make many young lives better and perform a service for your country. Finding the right path and taking the first step towards the goal of making that program a certainty. And yes I would do well to do something similar, but without the tools you already have at your disposal.

[Burgerman]

I do have to ask you, the first day you woke up after your accident, were you prepared to take over all your mobility needs ? Probably not huh. Some folks will never be prepared to administer their own care, now not physically, but mentally. Understanding every single person's situation is different in some way, both physically and mentally.

Well I took about 6 months to figure out that the system wasn't up to the job, and was fighting the UK wheelchair services before I left the spinal injuries unit. But that's just me.

But this scheme didn't remove anything, the old system remained. Only those that wanted to go this way did so. It just seems that people cant be bothered to help themselves.

[HiltonP]

What I find extraordinary is how easily people accept being told what to do when it comes to "things disability". The same people would never accept being told what type of motor vehicle to buy, or where they should live, or what sort of computer they need, or what sort of clothes to wear, yet they are quite willing to have a complete stranger tell them exactly what sort of wheelchair they have to have, who they have to buy from, and who will maintain it for them.

I accept that there may be a small percentage of the population that needs guidance, but the vast majority are far better off taking such matters under their own control. I agree with you John, it does seem as if people simply can't be bothered to help themselves (whilst shouting all the time about wanting more rights and independence), or possibly it is that they just don't want to take responsibility and want to be able to blame someone else if it doesn't work out right.

[Burgerman]

What I find extraordinary is how easily people accept being told what to do when it comes to "things disability". The same people would never accept being told what type of motor vehicle to buy, or where they should live, or what sort of computer they need, or what sort of clothes to wear, yet they are quite willing to have a complete stranger tell them exactly what sort of wheelchair they have to have, who they have to buy from, and who will maintain it for them.

Actually MOST people know, and want to know, very little about anything. I am the opposite.

You mention other stuff like computers. of every 1 user that has a clue, knows what is in their PC, how much mem, disk space, number of cores,/speed /operating system, there are 50 that don't. And don't want to. And know about as much about their car or heating system. I see an endless stream of stuff here, brought by friends, carers, relatives that "wont work" or that are entirely unsuitable for purpose bought in ignorance...

If you try to explain the problem, they just don't want to know, and look as if they are in pain.

[Irving]

What I find extraordinary is how easily people accept being told what to do when it comes to "things disability". The same people would never accept being told what type of motor vehicle to buy, or where they should live, or what sort of computer they need, or what sort of clothes to wear, yet they are quite willing to have a complete stranger tell them exactly what sort of wheelchair they have to have, who they have to buy from, and who will maintain it for them.

Actually MOST people know, and want to know, very little about anything. I am the opposite.

You mention other stuff like computers. of every 1 user that has a clue, knows what is in their PC, how much mem, disk space, number of cores,/speed /operating system, there are 50 that don't. And don't want to. And know about as much about their car or heating system. I see an endless stream of stuff here, brought by friends, carers, relatives that "wont work" or that are entirely unsuitable for purpose bought in ignorance...

If you try to explain the problem, they just don't want to know, and look as if they are in pain.

Goes hand-in-hand with the growth of the disposable culture. Why learn about how something works so you can fix it if you can just throw it away and buy another.... My Dad always fixed things rather than throw them away, and he taught me the same thinking.... sadly, despite my best efforts my kids haven't embraced that thinking... though my 13y old nephew shows promise... he can bore the legs off a donkey about the mods to his PC to make it a serious gaming machine....

[Burgerman]

That's good.

Why do people need to know?
Because it gives you the power to take charge, to not be ripped off, to understand why things work or don't -for eg my house phone murders batteries as most do (fixed with 1 resistor to lower the stupid fixed mA charge rate by 3) - or what products will work with what. As you know there's often a better or cheaper way. Or a way where things seem impossible. As usual everything depends on knowledge.

[Cal]

To an extent I agree .... but purely from my own experience, I no longer have lots of time to do all the research I would like into all sorts of things such as new equipment purchases, or dealing with care packages. When I was doing my PhD I could be a lot more flexible with my time and had the ability to deal with these things in a lot more depth than I can do now that I'm in full-time work.

I know a lot of disabled people whose time is their own - i.e. they don't work, so they don't have to get up at silly-o'clock in the morning to get ready and go out to work. They also don't have 'huge' money worries since they receive benefits etc. to cover the basic costs, but don't have lots of money to play with. Many fill their time with hobbies, and some are involved in charity work. I have said to them that they do a lot more meeting up with friends for lunches and drinks etc. than I could ever manage!. However, I certainly don't begrudge them, as they all face their own challenges, particularly health related - which can often feel like a full-time job in itself.

It's not that I don't care or don't want to be fully informed/involved, but I find I'm exhausted after a full days work, and once you do all the other practical 'stuff' in life, from shopping, paying bills, organising PA's and care 'stuff', there isn't much time left. So I've found myself having to rely a bit more on the judgement of others, with the hope that they are either doing their job correctly, or have my best interests in mind - although it doesn't always happen that way!. I guess I'm saying in that pursuing other challenges/interests in life, I've had to give up some control on others .... that probably sounds as clear as mud!

[Burgerman]

So I've found myself having to rely a bit more on the judgement of others, with the hope that they are either doing their job correctly, or have my best interests in mind - although it doesn't always happen that way!.

Its much worse than that...

But this is your choice. The pilot scheme wasn't intended to replace the "experts" but to give those that want it more options.

[Cal]

The pilot scheme wasn't intended to replace the "experts" but to give those that want it more options.

This idea of personalised budget sounds ideal to those of us who have an interest or who have particular mobility/powerchair requirements. Sadly it is not available in my area, and as far as I am aware, it's still a case of take what you're given (the absolute basic - more often than not, not suitable for purpose), or get nothing at all. I've tried over the years with my local wheelchair service to ask if I could get the contribution which they would have made, towards a private purchase instead where I'd meet the majority of the cost, but they wont do that .... in fact, they've never even offered the old 'NHS Wheelchair Voucher Scheme' .... so the service really isn't fit for purpose. Hence, I've always had to purchase privately.

My reference to "having to rely a bit more on the judgement of others ...." is a more general point about me, due to other commitments, not being able to micro-manage things in the way I used to. The example I had in mind was a situation I had recently of meeting with my local authority to review/discuss care setup (direct payments etc.). I used to be able to meet more regularly with the 'experts', but I'm not as available as much now, so I have to make sure that if I'm taking time off for these meetings, then they have to be worthwhile and productive - and I have to trust that the 'experts' are doing their job, as I don't have the same time to chase them up to make sure things are happening. Sadly, this is not always the case.

[Burgerman]

Well the voucher scheme is available everywhere in the uk. But its not flexible enough. They give you some money, and tell you where to spend it, and a list of approved chairs and dealers...

[Cal]

Well the voucher scheme is available everywhere in the uk.

Sadly - not even the voucher scheme is available here in Scotland. Scottish NHS and English/Welsh NHS are separate bodies and operate differently

[Joey berry]

I have no idea if I'm in the right spot to post this but I have a jazzy select 6 wheelchair and I'm not very happy with it and every five years I can get another wheelchair of my choice uptown a certain point this is my second power chair and I guess its built for mostly outdoor use but the chairs that have been talked about on this site have peaked my interest and I want to know where I can get one of these chairs that go 25-50 miles and maintain a battery charge I live in the USA and I thought I had searched power wheelchairs out very well but apparently I know nothing and I'd almost give my left arm to own such a chair the closest store to me is about 3 miles away and my chair is rated to go 15 miles but I will not try to go to this store because I feel sure my chair would not make it there and back home I cannot afford a vehicle to travel in and I'm not able to drive but it would be nice to have a little freedom right now I'm a total shutin because of the limitations of my power chair so please if anyone knows where I might be able to purchase one of these super chairs please help me to find one yours truly JOEY BERRY

[Burgerman]

We are using lithium batteries, built up from 8 liFePO4 cells. Then a chair that normally does 20 miles can go 50 to 70 miles.

Like expresso here.

68 MILES Around NewYork measured by GPS.

[Bubbernator]

Hi, Joey. If you want to learn about the possibilities of power chair performance then you've come to the right place. Take some time and read up on what some of the forum members have done with their chairs and you'll be amazed.
And then, if you're anything like me, you'll get mad as hell at the big power chair manufacturers out there. There is so much more they could be doing to improve performance and range but choose not to. The batteries are a good place to start.

[biscuit]

Hi Joey. Not really this thread, but other threads about your interests are very relevant.

I love that you brought it to the top of the list though!
I totally agree with Sully.

These people who control personal activities with money like you and your chair really do not like to relinquish that control. If the recipient does not have a strong enough personality or is able to drive these controlling people with technically perfect explaination, and strong enough not to even permit them ( the controling people) some way of refuting their chair's abilities, (how it is so superior) then they are lost.

One can get PIP here for disabilities including mobility, and entitlement is very thoroughly assessed, but it's actual money without any strings beyond the regular assessment. It would be useful if the pwb was done like that.
And in fact those getting PIP at standard (or enhanced) rate for mobility can lease a wheelchair from Motability.

[Burgerman]

???

It would be useful if the pwb was done like that.

viewtopic.php?f=2&t=7606&start=810#p165334

It can be. IF you have a strong enough personality... As I just showed again.