Personal Wheelchair Budgets

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Re: Personal Wheelchair Budgets

Postby Burgerman » 24 Aug 2019, 15:08

Basically he is covering anything that they can use to get out of . It really is f'cked up when the boss of the NHS has to do this.

You really do fail to understand that you are lucky to have a CCG that will move, the majority won't hence the legislation, Simon Stevens must be pissed off at his guidelines failing for him to bring in legislation. If he couldn't make them change one individual certainly isn't going to unless the CCG are weak. The majority don't seem to be and as Terry found out WCS are stuck unable to do anything as the CCG holds the purse strings.


All very interesting. But this is from the perspective of you, who seems to be all hung up on technicalities. My CCG had nothing to do with it. They hadnt even heard of it when I made them pay out for me, both as an original pilot scheme (where the local authority/council just added the money to my direct payments as the only way they could figure out to legally provide the money). Or later (last 2 payments where the WCS funded it from god knows where) and I am now on my 4th patment. Yet my CCG STILL have not approved or agreed anthing. If you ask about it they are still bewildered.
Theres still only me in grimsby. Why? Because I dont worry about all the technicalities and dont get hung up on them. I just pushed them (WCS) for what their own remit says they were supposed to be doing. You are listening to all their excuses. Thats all THEIR problem not yours. Excuses.
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 24 Aug 2019, 19:01

Excuses? FFS when the head of the NHS has to resort to legislation it is beyond excuses. Your WCS/CCG rolled over after a bit of pressure, almost every payment made has to be approved by the CCG. My CCG publish every payment above £5000 on their website every month, the cost of providing a chair is passed to them for approval and they accept or refuse it, adult social care or district nurses do the same for equipment. Your WCS have made a good case for you based upon what you provided, as Terry has found out not all will do this, most just follow the rules and don't want to fight. If you can get past that you've got precedent, anyone joining WCS can use the same argument so it'll continue for ever. I totally agree that you need to prepare your case, go in with a this is what I need attitude and push for what you need but for many this is met by staff who are over stretched and don't want the hassle, the thing that you mention a lot. So you kick and hit back but the higher ups are the ones who breed that attitude. Eventually you resort to legal action but they don't react to that because they know you can't do it. All it needed was someone at the bottom of the pile to do their job. Or you could follow the complaint procedure but you won't get far.

My CCG are terrified that someone gets a voucher or PWB for a power chair, why? because it sets a precedent. Look at the money involved, they lose all the expensive power chairs, this reduces their discount and drives up manual chair prices which they supply a lot of. They pay more for power chairs and even worse will have to give PWB money based upon what they pay. It is basic economics and they know it will hit them.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 25 Aug 2019, 04:11

Thats all very well. But I am DRIVING around in the result of my 4th budget. And I dont much care how they deal with that behind the scenes. Its THEIR problem. And in a non socialist setup (ie private business) when the boss mr. stevens says jump, you do. Because otherwise you find yourself on the dole. I cant change that, but I can get what I require, and started all this in the first place ABOVE mr stevens head.

And meanwhile, the NHS socialist system lets people die because they dont have the staff, or money for drugs, or beds and leave people waiting 20 hours in A& Emergency on trollies. Mostly due to the rediculous way its run, and things like wasting 25 million every year on bloody quackery like sticking pins in you. https://www.nhs.uk/news/medical-practic ... onic-pain/

And its common. Heres my own doctors. https://www.birkwoodsurgery.nhs.uk/staff1.aspx
So the person in charge is called some unpronouncable name like oiiowgu or something and is obviously black. So obviously employing a nutty german doctor called karin severin whose special interest is Accupuncture is perfectly rational... Doctors SHOULD use reason and locic, understand the scientific method, but thats too much to ask. And its got a google review of unbelievably bad. Just like most unusable doctors here. How is it possible in the 21st century that people will happily waste money on this garbage, and that too goes through the CCG instead of ACTUAL medicines or equipment?

In 2000, a British Medical Association survey showed that around half of doctors had prescribed acupuncture in the UK.


And they used to do the same with homeopathy until recently. And many other crazy quack quack cures. You couldnt make it up. Or my 3 patient hoists, 2 of which have maintainance contracts that I didnt want, dont need, and tried to refuse? They are all a bunch of idiots. All you can do if fight for YOUR own needs. If they can approve this sort of bollox it shouldnt be hard to get a wheelchair passed them. And it isnt.
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 25 Aug 2019, 10:25

There are many faults to the NHS most of which don't concern me, I get a GP visit to my home within 4 hours, ask for medication changes done same day, every service I deal with responds quickly, yet others wait forever. I'll push for what I need and get it, until you hit WCS. I'll debate here with you and it is no different with WCS but it is a brick wall, you can't go round it, over it or under it because they are tied by the CCG and it is drummed into them, they know it is wrong but won't fight. I take time to understand their systems to try and find a way through but it doesn't exist, they have their wheelchair supply business and don't want to lose it.

At the moment I am not bothered I finance my chairs other ways but when they get legislation in place I'll start again because that is a way to knock the wall down. Others face exactly what I do because their WCS/CCG operate in the same way and it is not their fault that the system is screwed, it'll soon change and we will all be able to have choice.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 25 Aug 2019, 10:35

WCS but it is a brick wall, you can't go round it, over it or under it because they are tied by the CCG and it is drummed into them, they know it is wrong but won't fight. I take time to understand their systems to try and find a way through but it doesn't exist, they have their wheelchair supply business and don't want to lose it.


And yet, I ignored all of that. And here I am, with a budget every 3 years - a decade of funding that proves you wrong. Before any of that bullshit you are talking about ever existed, and also after it did. And still no problem. Same with others on here. They are as "tied" as they say they are, its all an excuse. The CCG dont understand or care about this, they just exist to rubber stamp stuff.
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Re: Personal Wheelchair Budgets

Postby terry2 » 25 Aug 2019, 13:53

I think it maybe down to where you live and how many people live in your area.

Round by me. We have every tom dick and harry from all round the west midlands staying our hospitals.
I don't think that should happen.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 25 Aug 2019, 14:20

What you get seems to be proportional to how much you fight. How much you know. How well you present your case. Everywhere.

There are many faults to the NHS most of which don't concern me,


It should. Because the sheer volume of waste and paper pushing, directly affects the quality of service all of us recieve.
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Re: Personal Wheelchair Budgets

Postby segreen » 25 Aug 2019, 15:58

I don't know of anybody (other then Burgerman) who get's a cash budget for building their own chair or for that matter gets cash to buy a chair from WCS. Everyone I ask or know of get's a voucher from WCS or their WCS buys the chair for them and the amount is always sub £2.5k. Does anyone know of anyone or our we all chasing dreams?

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Re: Personal Wheelchair Budgets

Postby Burgerman » 25 Aug 2019, 16:44

Theres been some on here, but cant remember who now.
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 25 Aug 2019, 18:27

I've got 6 friends within 20 miles who are all high level spinal injuries and require power chairs, none have been able to get vouchers or PWB's but we are all the same CCG/WCS. We have a big proportion of high level injuries because it is a big outdoor/adventure area, all my friends bar 1 are cycling accidents. This definitely impacts on what the CCG will provide but the weird bit is they will spend on individual chairs, I've got expensive micro joystick and neck mount and have had different backrests etc. There is definitely money in the system but they spend it with their own company.

I've never met anyone who has had a voucher or PWB for a power chair. BM's payment doesn't seem to be the same as what the PWB guidelines suggest and seems to be unique. Credit to him for getting it but based upon experiences here and my personal experience no other CCG will do it. BM, do you know if your WCS/CCG links with other CCG to purchase chairs? I'm convinced that when they do they are under pressure not to give vouchers/PWB.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 25 Aug 2019, 18:55

I never asked. If they start mentioning funding, CCGs, or anything of that nature I explain that I am not interested in their internal incompetance, only in my money. And to deal with it however they wish.

Initially the wheelchair services were not involved at all other than to assess me (my own assessement ticked after I destroyed theirs in a high level meeting with a representitive of the health department (nigel lansley's seretary) and reps of council and NHS bosses and local NHS administaration. The WCS were made to look incompetant, and it was agreed in the following meeting that they were not fit for purpose. Thats how it began.

After that the responsibility to continue this was with the WCS who repeatedly had no idea what I was talking about until I went through a few historical facts. They then decided that they would assess me at home, which was quite comical. They used my assessement again, and then sent a cheque. The last time they did a bank transfer. And it was by: (goes to look at online backing)

LNCGOO NHS PWB PAYMENT FPI

Previous ones were different.

I have the same fight every time, that they have to assess me. But they have been through that a few times and always come out badly. They dont understand my needs, or chairs as well as I do. So its easy to destroy there "assessement". They were actually quite easy to deal with last time but slow as hell.

And they STILL dont offer a PWB if you call them up today. Unless of course like me YOU INSIST RATHER STRONGLY.
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Re: Personal Wheelchair Budgets

Postby segreen » 26 Aug 2019, 09:20

It doesn't matter how strongly you insist or threaten them in Bolton, they won't fund PWB. It's a voucher or they supply you a basic chair. Failing that you fund it yourself as I've done for the past thirty years or do without.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 26 Aug 2019, 10:11

I dissagree. I f I was in bolton I would have my budget just the same. How strongly did you insist?

For e.g, newspaper, solicitor, head of NHS, gov health department, mp, etc? Or did you just speak to the idiots at the WCS?
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 29 Aug 2019, 14:43

Progress with my attempt, went to WCS today, took my own self assessment along with the email stating power chairs would be included and had a reasoned discussion. The head of WCS came into the meeting and had been in touch with the NHS department that gave me the confirmation and she accepted that they are going to have to provide them. WCS OT agreed with everything in my self assessment and would use it as the basis for her report. Whilst they agreed with everything I put forward they are tied by CCG policy but now have ammunition to use to get change. I'll be used as a test/trial case.

Definitely worth doing your own self assessment, the WCS technician said that one of the most difficult things was identifying what people need and said my self assessment was really useful.

We'll see where it goes but it is making progress, provided that the CCG don't try and block it. So far no need for threats just common sense reasoning.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 29 Aug 2019, 14:59

WCS OT agreed with everything in my self assessment and would use it as the basis for her report. Whilst they agreed with everything I put forward they are tied by CCG policy but now have ammunition to use to get change. I'll be used as a test/trial case.


They could have done this many years ago. YOU pushing them was what made it happen. Exactly as I did a decade ago. Left to their own devices they would never "find the time" such is a socialist structured NHS. Because its just easier to ignore everything and look for excuses.
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 29 Aug 2019, 15:08

I pushed them in the past but this time had the threat of legislation and confirmation that it would apply to power chairs. WCS head knows that they will have to have it in place and they might as well use me as a trial. A much different discussion to those in the past but they now know it has to happen.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 29 Aug 2019, 19:33

They knew that in 2015. Thy chose to do nothing about it.
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 30 Aug 2019, 10:45

They did nothing about it because there was no way they could be forced. What changed was the email I gave them from NHS England, they tried to check what I was saying and had proof of and when they did realised that they couldn't defend their policy. Totally different to every conversation with them in the past. Simon Stevens made the right call bringing in legislation. I'll continue on even though I really don't desperately need a new chair, looking like a Quickie Q700R with some adaptions as my backup.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 30 Aug 2019, 11:48

I disagree. Those that push get what they are entitled to. Those that dont, dont... Thats how this scheme began in the first place. Never mind technicalities like you are talking about above. If you push, adequately for your rights then one way or another someone makes it happen.
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 30 Aug 2019, 12:32

You still don't get it, people push and hit a wall. The laughable suggestions you made like going to a newspaper are a non starter, I do a lot of radio/TV interviews during events like the 2015 floods and asked the reporters that I worked with whether there was a newsworthy story, there wasn't. Same with a solicitor, they had nothing to fight with. Nhs had offered you a chair fulfilling their obligation, you don't like it? Nothing to be done legally. NHS introduce PWB as guidelines with nothing forcing power chairs to be included, sorry the guidelines don't include you. Head of NHS realises that almost every CCG is ignoring him so he does something. Sadly we can't introduce legislation.

The only thing that has changed is adding legislation, now you can use a solicitor if they don't do it you can force them to, the head of WCS was shocked when she found out that there was legislation, that is what brought the change in attitude, I was probably less pushy than previously because I knew that I could win. Before I would of been much more difficult there was no need to be. As I expected the big concern was about their wheelchair supply business and her first call after the meeting was to the boss there. They know the impact and it will impact on their budgets. It all comes down to money at the end of the day.

The other thing different this time was my assessment of need was more in depth and the OT could use it as the basis for her recommendation but that didn't alter how it was before, she could advise based upon my criteria but it wouldn't have got me the PWB.

We are all in a much better position now but will still have a fight over how much they give you. And don't expect a cheque, current PWB for manual chairs in my area is send quotes to WCS, they check spec is OK invoice goes to them, they pay supplier.
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Re: Personal Wheelchair Budgets

Postby greybeard » 30 Aug 2019, 12:51

"And don't expect a cheque, current PWB for manual chairs in my area is send quotes to WCS, they check spec is OK invoice goes to them, they pay supplier."

That's hardly in the spirit of PWBs and certainly not what was intended. How is that in any way a personal budget to be spent by the user on any home built, new or used chair as they see fit? It is no real improvement over the current system, except rather more money might be available.
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 30 Aug 2019, 13:03

Sadly direct payments haven't been sorted https://www.england.nhs.uk/personal-hea ... stions/#q6 more legislation change needed, until then you are stuck with the other 3 options. Unless you can find valid reasons like no personal contribution.

Direct payments are currently not routinely available as an option for managing a standalone personal wheelchair budget. NHS England and the Department of Health and Social Care are currently reviewing existing regulations to establish whether additional contributions are permissible under the Direct Payments in Healthcare Regulations.
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 30 Aug 2019, 13:08

And the guidelines require them to check what you are getting.
How can CCGs ensure quality and safety if people purchase wheelchairs outside of NHS commissioned services?
As part of the care and support planning process, the personal wheelchair budget will need to be agreed by the responsible clinician involved in that person’s care. They will need to agree that the wheelchair chosen is the correct specification to meet someone’s assessed clinical needs.

The BHTA (British Healthcare Trades Association) offer an accreditation scheme for independent suppliers which can support people to make decisions about where to purchase their wheelchair.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 30 Aug 2019, 17:36

Wrong on absolutely every count.

You still don't get it, people push and hit a wall.

Not only do I get it, I am sitting in it. I am looking at my bank account. And seeing 4 deposits, 3 years apart. Its YOU that doesent get it.

And the guidelines require them to check what you are getting.

Not only do they not CARE what you are getting, its got nothing to do with them. Thats the whole point! Thats why they were created. To give YOU all the options you need. I use mine for building my own, parts, such as lithium cells, PL8 chargers, welding, metals, etc. OR for a couple of used chairs. Or for an actuator... Or I leave it in my account and use it for maintainance or towards a newer chair later on. And that is the WHOLE POINT!

Sadly direct payments haven't been sorted https://www.england.nhs.uk/personal-hea ... stions/#q6 more legislation change needed, until then you are stuck with the other 3 options. Unless you can find valid reasons like no personal contribution.

They can and do pay IF YOU MAKE THEM! The stuff you quote are all a bunch of excuses they are using to fob you off because you always get hung up on THEIR problems and details generally. They can and do pay, if you are stubborn. Would you like to see my acount going back a decade? They get permision from those in charge to ignore the bullshit they are showing you as excuses. They told me the exact same stuff.

"And don't expect a cheque, current PWB for manual chairs in my area is send quotes to WCS, they check spec is OK invoice goes to them, they pay supplier."

:lol:

Where do you get this garbage?
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Re: Personal Wheelchair Budgets

Postby Burgerman » 30 Aug 2019, 17:46

THEY PAY ME. To BUILD my own chairs as I see fit. (Thats as ME, I, JOHN sees fit. Nobody checks anything, nobody asks me why I bought a Roboteq or anything else.)

And even used that info as a flyer sent out across the country when explaining to the various WCS departments how it works and why!
The NEED IDENTIFIED (by me, BEFORE this budget even existed) was that the WCS were useless, and I could build a better chair for less than the manufacturers that they dealt with. And that I knew better what was safe and what I needed than they did.

All the stuff you quote is both wrong, and added on by idiots that dont get why it exists in the first place. You should TELL THEM SO!

Read...

MY LIFE -
MY CHOICE
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Re: Personal Wheelchair Budgets

Postby wheelie junkie » 30 Aug 2019, 18:22

Burgerman wrote:

Where do you get this garbage?


From the Personal Wheelchair Budget on the NHS website, https://www.england.nhs.uk/personal-hea ... questions/ it doesn't get any closer to the horses mouth. You fail to understand that you have been lucky, the PWB system is not what you get and if people go into it not understanding how they will get the budget they are in for a shock.

Read that page and try and understand it, this is what a PWB is not your one off version. The questions and answers explain it all. If you want a direct payment you are going to have to find the right reason so you need to know that in advance, no good making it up on the day. This is important, no good saying "my virtual mate from Grimsby gets a cheque"
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Re: Personal Wheelchair Budgets

Postby Burgerman » 30 Aug 2019, 18:47

Read that page and try and understand it, this is what a PWB is not your one off version.
Thats an advisory. Its as flexible as you make it.

The questions and answers explain it all. If you want a direct payment you are going to have to find the right reason so you need to know that in advance, no good making it up on the day. This is important, no good saying "my virtual mate from Grimsby gets a cheque"


I know. Thats EXACTLY what I have been telling you from the start. And everyone else. And that way you get what you want. As I do. For over a decade. And thats why I am used omn the green flyer. Thats was handed out in boston, and I dont even live in boston area. It is an example of what IS possible if YOU organise yourself. Instead of worrying about THEIR details, advisories, funding options (theres many) etc.
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Re: Personal Wheelchair Budgets

Postby Burgerman » 30 Aug 2019, 18:57

From your page. The whole page is wooly and not precise. The outcomes and needs are also a matter of opinion. And OPTION4 for payment includes:

____ Direct payment: This is where the budget holder holds the money (THATS ME)
in a bank account or an equivalent account, and takes responsibility for arranging the care and support, in line with the agreed personalised care and support plan.

I decide, I assess, I choose what to spend it on based on MY own CHOICES! As such they/we decide a budget, they wash their hands of me every 3 years. For over a decade.

______ Direct payments are currently not routinely available as an option for managing a standalone personal wheelchair budget. NHS England and the Department of Health and Social Care are currently reviewing existing regulations to establish whether additional contributions are permissible under the Direct Payments in Healthcare Regulations.

They are if you PUSH them And insist. Because thats exactly what I do. In fact its not possible to know because I ue what they give for parts, DIY builds, discounted trade chairs, used chairs, sold chairs, and use it over time. So this is already an unworkable rule.

Therefore where a direct payment is requested it would either need to meet the whole cost of the wheelchair (which may be appropriate as part of an NHS Continuing Healthcare package), or be part of an integrated package of care and clearly able to demonstrate the health and wellbeing outcome which required a contribution via a separately commissioned service

Not sure what a seperately commisioned service means (more wooly talk) but that EXACTLY what I am doing for a decade every 3 years. Based on MY assessed needs. They give me money that matches OUR assessed needs, chair etc. So wheres your problem? YOU organise yourself, YOU push, they give you a cheque. Actually a bank tranfer last time.
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Re: Personal Wheelchair Budgets

Postby duke1 » 30 Aug 2019, 19:06

hi all maybe an idea would be folk who live in the same areas to get together and make a bunch of pwb claims its much easier to get support via your mp or similar if there are a few of you,
i never thought mps worth the oxygen they steal tbh but during all that bedroom tax debarkle we and several folk living around our postcode was in the same boat and we got together and got our mp on the case and managed to get most of the group sorted and through clever thinking he had the ha surveyor come and measure the actual houses and not go by floor plans drawn up when houses was first built and found nearly all the bungalows adapted for disabled use have the 2nd bedroom reduced in size to fit the wider door frames and wetroom now the surveyor has revised floorplans and advised ha that all these properties must now be reclassified as 1 bedroom,on our own no one listened but half a dozen voices,letters.emails etc soon add up and then there more compelled to act,so anyone in southeast england who wants to do a joint application type thing im in.tired now,peace ;)
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Re: Personal Wheelchair Budgets

Postby Burgerman » 31 Aug 2019, 00:39

The thing about a budget is that theres no point at all if you are only wanting what they will supply and maintain.
If thats the case you may as well let them do that.

The difference is where that isnt any good and you want to do something different that is not in their remit. For e.g. they may ASSESS you for 4MPH salsa, with all the seating etc, and offer you the money instead. So that you can get say a couple of used 6mph chairs so you have a backup, and have money to maintain them or customise them to your desire. Or build your own as I do. Or want a chair that will work in your van too. Some eed special low seating etc.

It also unties you from their timeframes. Right now for e.g. I have a 3 yearly budget, but over the last decade or so I have rebuilt, redesigned a bunch of chairs. So I may not USE my next budget on a chair but to rebuild a few older ones. Or save it till next time so I have double the money and buy say a NEW 15k chair. It leaves YOU responsible and YOU in charge. If you know what you want, can repair, maintain, and buy right, this is by far the best way to do things LONG TERM.

If you can clearly show WHY this is the best option for you then getting a budget has not been that difficult for at least a decade. You just need to be very persuasive. But this was all supposed to be rolled out to make it easy for anyone. But you still need a reason.
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