Tuesday, April 13, 2010

Taking the care out of community

So I finally got round to phoning up the local authority's welfare rights department about being turned down for a community care grant.

I wish I'd not bothered wasting my time on the phone call, let alone applying for the community care grant in the first place.

It seems that the local welfare rights department won't assist with social fund decisions because they disagree that there is no right of appeal, only review for social fund applications. Whilst I agree that the no right of appeal is fundamentally wrong I think that welfare rights should be dealing with any welfare problem not just the one's they think they should. Particularly because this welfare rights department are part of the local authority.

The welfare rights 'expert' I spoke to advised me that none of the items I applied for on my community care grant will be covered by a community care grant. This is because the items I applied for are primarily medical and as such should legally be supplied by other state funded agencies. There is a chance I may get some funding for a mattress but no chance of getting funding for the specialist tempur mattress. The community care grant may provide funds for an averagely priced mattress as that is an essential item but the tempur mattress is needed for primarily medical reasons, ie to reduce my night time dislocating so that cost should apparently be funded from elsewhere. It seems community care grants will be refused for any item considered to be for 'medical' needs.

On my community care grant application I asked for help with the costs of a tempur mattress, a mobility scooter, ramps for access with the scooter, a storage shed for the scooter and specialist shower chair. I didn't expect to be funded for all of the items but I had hoped for some of the cost to be contributed by the social fund.

The mobility scooter is supposed to be funded out of the Disability Living Allowance High Rate Mobility Allowance, but like many disabled people I have found it more cost effective to use that money for living on. I simply can't afford to hand over approximately £170 a month for a vehicle. I'm very, very fortunate to have someone who wants to buy me a mobility scooter so avoiding that issue but I need to meet the cost of storage shed and ramps to be able to get that scooter in the first place. I could, as some have suggested, apply for an electric wheelchair instead but the rules on wheelchair provision via the NHS in my local authority state that I'd have to use that wheelchair indoors for a minimum of six months before I'd be eligible to even be considered for an outdoor chair. I live in a tiny one bedroom flat with no room for a power wheelchair, would need more ramps installed to use it and probably couldn't get a power chair through any of the inner doors even if I was willing to use a powerchair indoors and lose all the benefits of staying on my feet in my own home. Welfare rights would not assist with this problem as they are funded by the same local authority as the wheelchair service.

The only advice welfare rights gave to me was to approach social services to be reassessed for the ramps as they are responsible for adaptations to housing. Frankly I'd rather die. It sounds terribly dramatic but I've spent years getting over the damage caused to my life by incompetent and inappropriate assessments from social services and the potential benefit of getting some funding for ramps is simply not worth the problems social services are guaranteed to cause.

So, it's back to square one. My advice-don't become disabled in the UK, the bureaucracy will kill you long before any disability could. I don't suppose anyone wants to buy me a proper tempur mattress ?


alhi said...

Have you thought of a memory foam mattress topper? I think they work along the same lines as a tempur mattress.


BenefitScroungingScum said...

Alhi: I'm on either my 2nd or 3rd memory foam topper. They do help, but nowhere near as effective as the tempur ones. Have you tried one? A memory foam rather than a tempur I mean?

alhi said...

Yes tried a memory foam topper. It was good at the start but it eventually really hurt the small of my back, think it was because I couldn't lie flat on my back with my knees straight otherwise my back really arched.

Is there no way you can get a tempur mattress on the NHS from occupational health. A friend did here; she is paralsyed from the waist down so maybe that made a difference?

allnottinghambasearebelongtous said...

Can't believe there are still advice agencies refusing to help with social fund reviews cos it's not an 'appeal'. That's so 20 years ago.

Might be worth checking for an alternative advice agency here


it's not just solicitors but includes law centres, independent advice entres etc.

If you feel like a bit of bed time reading here's the official social fund guidance


Bear in mind it's an internal DWP doc so prob has a less generous interpretation than reality but it's an insight into how they think.

And although my knowledge is well out of date (and I have brain fog) I reckon the advice you've been given is a bit pessimistic. Unfortunately, cos CCGs are discretionary it's very difficult to predict outcomes. Would have thought the special mattress was worth pushing for at least.

Achelois said...

Have you applied for housing? Ouch I know I know it hurt to type it but you do qualify and would eventually get somewhere more suitable adapted for the disabled.

I could not agree more on the wheelchair situation. I am in the same situation myself. I cannot use a normal wheelchair because of obvious upper body dislocation issues. I live rurally so to be honest despite the dla all my money would go on a car that would accomodate a power wheelchair as I simply couldn't get it in and out of a car myself. A whole other nightmare. I couldn't collapse a normal wheelchair then put it in car, take it out, then put it together either because of hand etc issues. It sounds defeatist but its true. I borrowed a walker the other day, one with a seat to help with the 'death walking' I could not collapse that alone, put it in the car, then put it back together again or take it out of the car.

I agree try another referral to occupational therapy as they could help on the bed situation. You may not get exactly what you need but you could get one of those electric bed things with a special mattress. I need one too by the way but I am in denial and am not sure I am up to the fight for my rights scene.

You and I are physically so alike in our requirements. We do not however match the ticks on the right boxes. So what happens is we continue to do our bodies harm. You are so right. Don't be disabled in the UK.

We are on a low income not on the appropriate benefits so don't qualify for the grant thingy.

Your post was so eloquent and my comment not. The above comment seems really helpful and I wish you luck with the quagmire of regulations.

I suppose what I am trying to say in essence is I so so get what you are saying. The problem being here is in part being caught in the poverty trap. We live in a wealthy part of the world and the rich around here - have every mobililty aid/adaptation/ needed (I am talking elderly rich here) they have drivers to take them to their Bupa appointments. I am not bitter about their wealth at all just very very tired of being stuck between a rock and a hard place.

I think its time to set up a justgiving page for you and get all of your mates to run and get sponsored, anything for the mattress. I laid on one in a shop the other day. Oh my god it was heaven. If there is a heaven then those mattresses would be there for anyone with ehlers danlos.

If I had the money I would just give you it. I don't so I have to write long and boring comments to show I care.

If caring helps you feel less let down.

In the meantime, I am sure that the person who is willing to buy you required mobility stuff will think of a brainy way to get the shelter to keep it in and lets just start the benefitscroungingscum justgivingpage for the ramps.

Bloggers will pass the word around.

I haven't been posting because it would be just one big moan right now and really admire that you keep your integrity with regard to all you go through physically and the way you blog, not self pity, no pure facts, reality hurts. But you really keep it real, I can't blog right now it seems because Ehlers Danlos frankly is a pile of you know what to live with and I don't want to write.. this hurts so does this bla bla But some days it all gets a bit much doesn't it? Especially when the system is agaisnt one. We are lucky in so many ways to live in a civilised country but some days living with EDS is not very civilised at all.

support and xoxoxox always.

Ben S said...

First up - bastards!

Secondly - still worth banging in request for a review - the mattress, especially, may not be considered a medical item (quote from the Social Fund Commissioners guidance discussing the meaning of 'medical item':

"An adjustable bed may help relieve the symptoms of certain
conditions, such as back pain or oedema. Its primary
purpose, though, as with any other bed, is for sleeping on. It
is not a medical item.

In contrast, a nebuliser has no other purpose than to relieve the effects of respiratory conditions. It is a medical item.")

I used to do welfare benefits advicework fulltime, but have been out of it for a year now - if you would like some help drafting an appeal letter then let me know - I am assuming you get my email address when I leave a comment?

And also to sidestep the state altogether you cold always look at www.turn2us.org.uk which has a searchable database of trusts and foundations that give grants to individuals - again happy to help draft letters if needed.

Finally, I agree with the comment above that a paypal tipjar or similar would fill very quickly!

Whatever you decide to do - good luck, and don't let the bastards grind you down.

Wordsmith_for_Hire said...


Hugs xxx

Vi said...

you know what really upset me while in the theme parks in America? These obese people who hired mobility scooters to get around the park instead of walking and then screaming at people for not giving them the right of way. You are just LAZY mate, not disable!!!!

bluehook said...

I think you could get the scooter funded by the Mobility Trust - you are EXACTLY the saort of person they are set up to help. Then perhaps the person willing to buy the scooter could buy the mattress instead. As for ramps and storage, that might be available from the Mobility Trust as well, but if not, set up a paypal button on your blog and ask for contributions, I'll be first in the queue.

BenefitScroungingScum said...

Alhi: That's a thought about the NHS, thanks! HAve you tried sleeping with a pillow under your knees to correct your back position? I couldn't lie down without one...

AllNotts: Well the area I live in still has some half day closing on a weds and very definitely isn't too keen on non WASPS so I'd say the 20 years ago thing is a progressive hope ;)
Thanks ever so much for the links and advice

Achelois: Thank you. Then thank you some more. I love my flat so moving is not an option, but I have just set up a paypal donation for the mattress etc so we'll see how that goes.

BenS: Thank you so much for that! I've yet to decide if it's worth appealing but you'll be the first person I contact if I do. I've taken the paypal advice and put a button on the blog already

Wordsmith: Isn't it just! Thanks love

Vi: I feel the same way about parent and child parking spaces, sure wider bays are justifiable but having a baby doesn't mean you can't walk!

Bluehook: Thanks for the info about motability trust I'll look into that. My DLA expires in Nov so I'm holding off on changing the car until after that...which impacts decisions about scooters/wheelchairs. I've put the paypal button on though, and very much appreciate your place in the queue ;) Hope all is well with you?

Marjorie said...

This is horrendous. I had a little taste of it about a year ago when a good friend and neighbour of mine became very ill - she was unable to get any help at all for ages because she didn't have a specifc diagnoses (because 4 different neurologists kept saying, in effect, yes, there is something seriously wrong with you but we can't identify a cause)
Did the community care people or the welfare rights ones tell you who you are suppsoed to get these "medical" items from? I know my friend got a Wheelchair via occupational health eventually, but I think that was the OHT deciding to give her it and worry about the paperwork later, rather than an 'official' one.

Thought - is there a Rotary club or similar in your area you could contact to see if they can help? They usually do fundraising for charity and may be open to requests from a local resident, especially if it is for a specifc, identifiable thing such as a scooter or ramps (You might, of course, have to put up with having your picture taken looking all grateful!)
I can't afford to buy you a mattress but I'll add to the tip jar to try to get you there.)

Marjorie said...
This comment has been removed by the author.
Marjorie said...

Another thought - just came across the Florence Nightingale Trust (http://www.fnaist.org.uk/) It looks as though they might be worth trying for the mattress, if you can get your GP or Physio to fill in (or sign off on!) the applcation...
Does your local authortity keep a list of charities etc offering support in your area?
But probably you've already thought of all those things.

bluehook said...

Just a point of clarity the Mobility Trust (http://www.mobilitytrust.org.uk) is separate from Motability. With Motability you have to turn in your DLA mobility component for a car or wheelchair/ scooter, but the Mobility Trust was set up to provide powered chairs or scooters for people who can't get NHS funding for whatever reason. That way you get to keep the DLA (or use it for a car).