disabiliy livin alowance

[mumoffive]

Hi, This is relevant probably only to UK members...so sorry if that upets anyone else.

Has anyone been successful in claiming dlA? My current flar started in December and has been progressinghorribly sincethen. I can no longer lift pans, weild knife to prepare vegetables, often cannot even lift the kettle to make a coffee. I cannot do small buttons, can't reach m feet to tie soes or put socks on, can't lit my arms for long enough to wash or brush my hair...in fact I have made a the decision to have my long locks chopped!!:sad: walking is agony and I ofen feel lightheaded with the pain of walking, no longer able to consider a bike ride and terified whn I go outalone in case I cannot make it back to the car!!!

i have kept hoping this will ease, the lupus will die down, thepain relief will take hold...bt still i am unable to do the things most people take forgranted.

My bigges fear is bein unable to take care of my children. We despeately need adaptations doing to the house, an accessable bath for th girls, hoists to lift them and a through floor lift to get them upstairs. I hope that by applying for DLA for me, I can use more persuasion on the council o get the adaptations done to the house...but will they grant me DLA??? My husband and I are full time carers for our children and already dependant on benfits for our income....so can I hope to get a claim accepted...or bcause Lupus is so unpredictabe will they prsume it is only a temporary problem?

In the two weeks I was on the predniselone 10 mg I began to feel less ill...still had pain, struggled with takss but was abl to cope and did no feel ill...until then I had not ralised how "ill" I actualy feel! it is coming back on me now and I hate it!!!! I do not have th time to be ill...I don't have a time to rest that oftn...bein unable to keep my eyes open is scary!
I felt myself nodding off in Church this morning, and actually had difficulty followin a conversation on the phone the other day!

Also reenly had the paperwork back from SS about the Core Assessment for the children...in which the Social Worker stated i appeared paranoid...and paranoia can be a symptom of Lupus....well i don't actually think i am that bd!!!

she also stated that I was over anxious and somtimes appeared aggresssive!

Hey how to pile on th stress!

My Rheumatologist suggested i should improve m sleep and destress my life!!!!

Oooh how simple!!!! shoot the kids then do I??? Or just get the help we need and he adaptations we need....so straighforward isn't it?

sorry turned into a rant there!

hugs

[lin]

So sorry your having a real bad time, i know your feelings, of trying to lift kettles and peel veg,

You must just put enough water in for a drink, and get your hubby to get the pans down, and peel the veg, thats what i do, he does it the nioght before, or we wait till he gets home,

But i should of thought you would get at least get bottom rate, on not being able to prepear and use oven

You must fill your forms in on your worst day, and your dr should have heard from them to, and he or she will have to write a letter,

All the best to you and your family
Take care Lin xx

[Clare.T]

Hello Tina

I moved your post to this section simply because this is the section for UK disability and benefits so it's a handy reference place. Also apart from convenience there is nothing 'wrong' about posting in another section.

I don't know why or who you think might be 'upset' ! Try not to be so concerned about upsetting or needing to apologise. You have a huge burden of very valid concerns and we are here to help you all we can.

The time indications for being eligible to apply for DLA are having had the disablement for at least three months preceeding the application and foreseeably for 6 months following. (There are also residence qualifications but obviously they don't apply to you.)

Other sources of income aren't taken into account, it is based entirely upon need which will be assessed. I have no experience of what sort of link up might be made with other needs such as home adaptations or to what extent looking after others apart from oneself is taken into account.
I mean looking after other family members. Not at all I suspect, but I might be wrong, that's just from what I have gathered.
Medical opinions count for a lot and I think one can have testimony from friends or relatives as to the extent of the difficulties.

I'm not clear if the Core assessment was for the children's needs, but anyway since when does a social worker become a psychiatrist and lupus expert?
Anybody who has even minimal dealings with SS and benefits agencies is going to feel 'paranoid' ! using the word in an everyday sense of being very anxious and feeling threatened Add to that the contacts with doctors and the NHS, plus all the trauma of moving to a new area and having to establish oneself there, without very special family needs.

How does the fool think people survive, facing huge responsibilities and being so vulnerable and dependent. So much depends on other people's assessment and good will against an unforgiving background in which the main aim is to 'save' money, regardless of the real cost to society.

It's easy to confuse defensiveness and determination with aggression.
Oooooops I feel a proxy rant coming on too !

Most people find admitting the extent of their limitations is a very depressing and distressing experience. So much time is spent coping despite the difficulties that applying for disability and having to list them one by one, means facing up to very grim realities acknowledging how much the disease is truly affecting them.

You need to mention your intention of applying for DLA to the rheumatologist and to your GP of course to see if they would back your application. The impossibility of not knowing what the future might bring works both ways - usually it takes several months for the right treatment to be found, there are few overnight recoveries if any.

If there should be a remarkable improvement then you can let them know but for the sake of the argument it is just as likely there won't be. That's the attitude to take I think, although of course you sure hope there will be an improvement. So you also have to have a pessimistic mind set when you approach this particular exercise.

All the very best and many hugs

Clare

[CreamTea]

"Over Anxious"!!!! :wacko: Perhaps you could write and ask them to clarify what they think would be an appropriate level of anxiety for all that you're facing at the moment!!!!!

And "sometimes appeared aggressive" - well done you for managing such restraint and only registered a "sometimes" up against such insensitivity.

Have you all been assessed by an OT?? They should be able to help with adaptations to the house and hopefully have a bit more of a clue about what you're dealing with.

Good luck with it all, I really hope things get easier for you soon.:)

[LolaLola]

I get DLA and am also a Carer. It should not matter as the decision is based on Care you need not whether you actually get that or muddle through somehow.

It is definitely worth applying, and I think seeing an O/T in your own right is a good idea. Have a good think how you can build up the evidence. Maybe a Social Worker of your own would help. I know they can b a pain but perhaps someone needs to view YOU not just how you provide for the children.
Best Wishes,
Lola x

PS Daughter also has DLA since very recently and it went through easily.

[Weese]

Tina,

First off I am so sorry for all the stress. Second when will people realize that when you question a mom about her kids and there care of course it puts mothers on the defense, it causes anxiety over the situation and makes moms aggressive!!!!

Dont you just love it when people tell you how you should react :eek: . All you can do in that situation is use reverse psyc. on them. Talk in a calm voice, even if you want to screem. Use non threatening body language, even when you want to bop them one. Dont share what you are really thinking, even when you want to tell them where to go.

I have to say when you are prepared with these things in mind you can controll the situation to your advantage. I had to go to mediation with my x about issues with our daughter who was 17 at the time. I knew he would say something to provoke me. I did not react, I kept calm, talked quietly and refused to react to his constant jabbs at me. By the time I left the office the lady had me wait inside till he left for fear of my safety. I really wanted to tell him what I thought but I would only talk about what the needs of our daughter were. Which was why we were there after all. Treat that social worker the same. They are looking for negative things and you know deep down how to handle this. Dont let her fluster you.

I know you can do it. Good luck, Lisa

[Achygirl]

Hello Tina

Sorry to ask such a personal question, but have you contacted an Occupational Therapist? They will assess how urgent you are, over the phone and then a Therapist will visit at home and assess your needs. I phoned them and had a visit within about 10 days, and then within the next 3-4 days they had fitted a bath lift, handrails, bed leaver, ketter tipper, (much safer), a perchng stool and some kitchen gadgets such as jar openers etc.

You are entitled to an assessment and I didn't have to contribute to the cost. Occupational therapy comes through social services and it may add weight to your DLA claim. They may even help you fill in the form or point you in the right direction to get some help.

Good Luck

Achy :more:

[mumoffive]

Achy, thanks for that about the OT. I did contact them two weeks ago and thy are going to arrange to come and do an assesment but are extremely busy. The girl I spoke to on the phone was very good and has already spokent to the Children's team so I am sure between them we will get some support.

I today got my award letter from DLA, they have awarded me lower rate care bcuase I cannot manage to prepare a meal.

that is it! the whol reason I applied was because of my limited mobility! I cannot walk around the house without severe nauseating pain, getting around outside is horrendous. I have to lean on the kids chairs or a trolley in the supermarket and am so exhausted after a trip to tesco I sleep for two hours!

I was seriously hoping to get mobility so I can apply for a blue badge! at leat i can park in close proxiity when I dont have the kids!
I rang to ask for an explanation, and aside from the award they have/haven't made I wa left realing by a comment on the screen from the decision makers!

the customer would not need assistance at night if her medication was left on her bedside!

i was horrified! we have 5 children! How can any responsable adult even contemplate that thought???? I was so concerned that this was adice being givn ou by the dwp that I immeidately rang the parliamentary and helath ombudsman. They suggested I contac my MP which I have done too. I also rang back to try and speak to a senior manager in the dWP but without success.

Imagine a young parent...maybe with learning difficulties, being given that advice???? leave your opiate based drugs on the bedside table so you don't need help to take them!!!!!

I cannot open the child proo containers, I hav to get David to get my tablets out for me, I cannot reach up to the hgh cupboard where the drugs are kept at home, Davi has to get them out he cupboard and out the bottle for me. When i wake in the night and need the Tramadol David has to go downstairs and fetch them for me...there is not an option, leaving them beside the bed is as responsable as leaving a loaded gun there!
I still can't believe they said it!

Anyway, I have now written outlining why I think there decision is wrong for the Mobility component and also asked if 45 year old women without my level of disability neded help to get in and out the bath, wash their edges and back and wash their hair, then need help to get dressed and do fastenings...??
I don't really want to fight the care decision, it was the mobility bit I needed, never mind...will wait and see if they change their minds!
I really hope the decision maker gets rapped knuckles over the tablets on the dressing table comment though!
Hugs

[LolaLola]

Don't despair, my first award was just Low rate care,which I appealed. I went to middle care High mobility, then after I got worse High care, High mobility but I do have the odd seizure and lots of absences and fall quite a lot and have been injured during fits or falls.
I do know exactly what you mean about your symptoms.Before I was being properly treated I was very like you in the things I found difficult.
I know it is a lot to have to appeal but really a Blue Badge is such a help.
Meanwhile in some areas(maybe all, I don't know) you can get it from Social Services as a Discretionary thing. Usually a Physio assesses you. Maybe it would be worth looking at that while you are fighting this. I am sure Social Services can give you the info.
x Lola

[caper]

You dont need to be getting DLA to have a blue badge (though I hope of course that you get this sorted as soon as possible - I had a lot of help from the local Welfare Rights officer to fill in my form & am sure it did the trick). Back to Blue badge - long before I had DLA, I had a blue badge. I got the form from Social Services and my GP completed the medical opinion part & I got a badge with no problem. It is as you say, a huge help.
Good luck

[Beth24]

Mumoffive,

I totally understand how you feel, although in different circumstances as I don't yet have any children!

Re DLA - I too receive lower level for 'care' but was denied anything for mobility. This is despite barely being able to walk down the stairs most days!!! I am currently being reassesed so lets see what happens. I don't see how they can decide this from a form and its so difficult to portray mobility on a piece of paper.

Re Blue Badge - Similar to you, I thought that I couldn't get one but I applied to my local Social Services and paid £2 for 3yrs. I've had it about 2 months now and its so much of a help although you wouldn't believe how few disabled spaces there are! As long as your GP agrees that you have limited mobility thn you are elligible.

And finally, I can't believe they had the cheek to say that you were over anxious and somtimes appeared aggresssive...they really need to understand your condition before saying things like that, especially in a report concerning your kids. Sometimes I feel like screaming at my parents in frustration and they've done nothing wrong! You have to bite your lip a lot of the time as there's so much to contend with and you're also trying to stay as independant as possible at the same time.

That turned into my own rant, sorry! x