not sure wot to do next...

msraec

UPDATE ON MY DLA CLAIM: Predictably i was turned down completely - the standard letter even had the cheek to say they had contacted my gp and nominated person (they hadnt). i know im entitled to higher rate mobility and higher rate care due to my CAB job but also knew this would happen..
note its sometimes better to be turned down all together because you have nothing to lose at appeal - if i'd got, say, middle rate of each i would risk losing those at appeal
Social servicves have given me a daily personal carer, who will also do cleaning (very hard to get!) and shopping without me having to ask for anything, ive been granted a blue badge and my gp and specialist neurologist both clearly state im disabled by my condition (ME/CFS) wheelchair bound or on crutches on a bad day
needless to say my appeal has gone straight in (do it straight away) and i intend to win (having a CAB rep with me of course) - DLA is not a privelige its an entitlement! will update when i get my backdated allowance!!
p****s me off how many people must read that letter and think oh well thats that then - NO - keep on keeping on, hard to do when you're sick but get CAB etc to help you - they will fight your corner all the way and if they have the resources will do a home visit (do appreciate tho that they are often severely underfunded and most staff work for free so show some patience!)  :)

ps tonyd - call your local social services dept and request an assessment - mine was very compassionate and not at all intrusive - they couldnt do enough for me -you also get to choose what parts you want or not want from what they offer - also apply for a blue badge whether you have a car or not and despite what the criteria may say...apply anyway - you have nothing to lose! anddont forget, esp on the bad days, you're gonna be ok

Tran

My partner has CFS/ME, depression and bad anxiety and he was repeatedly turned down for DLA for over 2 years. He was not even offered the lowest rate care at any stage. We got supporting letters from the GP, consultants and absolutely everyone involved in his care, all of which the letters backed each other but none of this appeared to help his DLA claim. After 2 years of this, in sheer desperation as we had tried everything, we went to see our MP in his monthly MP surgery and asked if he could intervene as we felt that the DLA were not applying their own criterior correctly in my partners DLA application as all his medical evidence showed clearly the level of his disability. The MP sent a very vague letter to the DLA offices in Leeds asking them to review their decision as his constituents were unhappy and felt they were not applying their own criteria correctly. Within 2 weeks we got a letter offering him highest care & mobility (not back paid unfortunately).

I am not suggesting that this would work for everyone but our experience has shown to us that MPs can help in these circumstances and might be an avenue open to someone when they feel they have tried every other avenue and they feel like they are banging their head against a brick wall (as we did).

Sadly though, we are living in fear of the renewal date and having to go through all this again in 3 years time!

Tran

UPDATE ON MY DLA CLAIM:
Social servicves have given me a daily personal carer, who will also do cleaning (very hard to get!) and shopping without me having to ask for anything, ive been granted a blue badge and my gp and specialist neurologist both clearly state im disabled by my condition (ME/CFS) wheelchair bound or on crutches on a bad day

Could you let me know please how you go about getting a Social services assessment please? what types of questions do they ask? do they need a letter form your GP as well? What services do they offer? Are 'help' packages tailored to the individual person's needs? Are their any guidelines that say generally what a person with XXX condtion would get? what help can you expect to get? would it be better to ask for an assessment after April 2005 (i.e. new tax year, new council funding)?

My partner has a blue badge already (because he got the DLA) but as he can't drive due to the CFS/ME  so he uses his blue badge rarely. He rarely leaves the house as he can't walk hardly at all and refuses to use a wheelchair and allow other to see him in a wheelchair. He struggles to move around the house most days and uses a stick/s to walk with. I am also disabled. We dont get any SS help except some childcare for our 2 (mildly) disabled kids [see the direct payments thread]. We don't really understand how SS help works so we dont know whether we would qualify for help or what help we would get if we asked for help. I have thought for some time we could really do with some help but if you don't know what help you could get then you dont know whether it is worth asking for help. Also we're both a bit afraid that if you ask for help, there would maybe be undetones that we cannot look after our children adequately and all the SS hassle that could bring. We're probably worrying unnecessarily but it is a concern for us.


DIRECT PAYMENTS THREAD=
http://forum.moneysavingexpert.com/cgi-bin/yabb/YaBB.cgi?board=Benefits;action=display;num=1101215078

sce37

Another thing to bear in mind is that if your appeal for DLA is successful and you are awarded DLA care at middle or higher rate then you should check out your claim for income support and ask for it to be reconsidered as a result of this change of circumstances.  Don't submit a new claim otherwise the date of entitlement will change. The reason being is there may be an additional disability premium added to what is calculated as your 'applicable amount'.  (the calculation as the amount you should be expected to live off).  If that amount is higher than what you are currently receiving for IB then IS should be topped up to that amount.  The CAB can advise you about this also.
An MI12 is a mortgage interest relief form available from jobcentre plus, it should be given with claim forms for income support.  HTH

msraec

Tran:
ARRANGING A SOCIAL SERVICES ASSESSMENT
Look in the phone book for your local social services department, call and ask for a care assessment to be arranged. (bizzarely mine came to me via my blue badge application - someone in that dept picked up from my application that i didnt seem to be getting enough care/support and called me to ask if i'd mind them organising an assessment...must be a new employee!).

MY RECENT EXPERIENCE
From my very recent experience SS has become very user-led and despite hearing horror stories about the dreaded SS visit, mine was not half as embarassing or uncomfortable as filling out my DLA claim form....(dont forget they do this all day). If you have any reservations get someone to be there with you on the day and make sure its arranged for a day that suits YOU. Re-book if necessary.

(SOME OF) THE SERVICES AVAILABLE
SS didnt want to contact my GP or anyone else - they did ask my partner to complete a simple form about the amount of support given and who does what(apparently this is what swung them to offer housework too). They can help with washing, bathing, personal care, dressing, bedmaking, preparing breakfast and meals for later in the day, company and lots more.

OTHER SERVICES
They also gave me lots of info about other services available such as delivered meals, community alarm etc and referred me for a occupational therapy assessment which will see what gadgets and aids may help me move around or do things more easily for myself (This wont and shouldnt impact on the care provision incidentally)

THE 'PACKAGE' (Care Plan)
The 'package' i was offered was discussed between me and the SS worker (and my partner). The worker then took my case back to her head of dept and came back with a yes to everything and an assigned carer within two days! I refused certain aspects offered, such as bathing (im 31 and just cant face that with a stranger right now but it was offered). There dont apear to be any guidelines for XX condition and they have sections to go though so dont worry too much about thinking in advance about what you need, their questions will help.

YOUR CONDITION
If they dont know much about your condition feel free to educate them, if they are making incorrect assumptions about what needs your conditon requires, do correct them! I gave my SS worker some info on ME/CFS and she was v grateful.

COMPLAINING
If at any time you are unhappy with your SS worker or your carer or indeed any aspect of the service you should report this straight away - the SS worker will (should) inform you of this and confirm in writing. You can ask for additional (or less) help at any time too. You can say no (as i did a month ago) then phone up and change your mind without it bewing questioned (thats what i did)

THE MONEY BIT!
I now have to have a financial check to see whether i need to make a contribution to my care provision. It's imporant to remember here that if your circumstances change (eg your sick pay stops or halves) you inform them straight away and they reassess immediately - so any contribution is not set for the tax year which is i think generally a good thing. If you are on benefits it is highly unlikely that any contribution would be requested.

YOUR RIGHTS
At any time you can change your mind and stop/start the care (or parts of it) offered. From my experience SS help is basically there to enable you, as far as possible, to have the quality of life you would have if you werent sick or disabled, without having to lean too heavily on family, friends and partners or pay for extra help.

The fact you may have help from family, friends partners is irrelevant as the extra work they take on is taken into consideration in a postive way (in my case the fact that my partner bathed me and my sister helped out with the cleaning and laundry meant SS offered help in these areas rather than assume they would be covered)

DISABILITY DOESNT MEAN LACK OF ABILITY
If there were any undertones that you could not look after your children simply because you were offered/ asked for additonal assistance from SS I would suggest you go straight to your local MP/ citizens advice bureau and get your complaint in immediately. I understand your concerns but im sure such an outrageous suggestion would go against all SS's own policies.

DONT THINK YOU QUALIFY? TRY ANYWAY!
I didnt think i'd get help from SS or a blue badge (as i dont strictly meet the criteria) and I've got both so do ask and if necessary ask again. I know i keep saying this but your local CAB can help you with any of this if you find it difficult to do yourself for any reason.


Good luck and once again remember these services and payments are entitlements not privileges!

Tran

Thanks for the info msraec. I rang the adult Social services team on friday to ask for info on assessment. Have now got to persaude partner to agree to an assessment. He thinks that even asking SS for help will make them think we can't look after our kids.

Is a careplan/care package also called a core assessment?

"From my experience SS help is basically there to enable you, as far as possible, to have the quality of life you would have if you werent sick or disabled, without having to lean too heavily on family, friends and partners or pay for extra help."

I got the distinct impression from my local SS office that it was a case of if you have relatives or friends that'll do it for nothing then they can and we'll only pay if you really haven't got anyone who can help. Certainally when i got SS funding for my children's childcare they went to great legnths to ask me if i had any relatives who could babysit my children on a regular basis so that their money could got to 'where it is really needed' Also when they did an assessment then they said only help for childcare was needed although both myself and my partner were having the same level of difficulties due to disability then as we are now. Does this mean we are unlikely to get any help now? Also the social worker & health visitor that arranged the childcare were from the child & families social services team - so is it likely that their remit was only to look at the children and hence they didn't consider mine & my partners needs?

As i have mentioned before, both myself and my partner are disabled. So should I ask for an assessment or should he ask for an assessment, or do we both ask for an assessment? I ask this because when i asked for info over the phone they said they carry out an assessment and also a carers assessment. In our case we both have problems and we both help each other out in the areas that we can as our problems are different. In some ways i am his carer and he is mine. I have epilepsy, severe mental health probs & a back injury and he has CFS/ME, depression and anxiety. So he helps me do things where 'a loss of consciousness' would be a danger e.g. he would watch the children in the bath because if i had a fit the kids would be unattended or if i had a fit i could be in danger. He also helps make sure i take medication and monitors my 'moods' as i am unaware of them changing. I help him with more physical jobs e.g. fetching things from upstairs, passing him clothes to get dressed, helping him walk by him holding on my arm etc etc that he can' t do. Then there are things that we both struggle with e.g. going outside- shopping/hospital-GP appointments/going to the bank-post office etc etc . Indoor jobs that involve lifting/stretching/moving heavy items - some cleaning and can't stretch to change bedding on beds. Also things like ironing (he can't physically do it and i dropped an iron when having a fit recently - fortunately only burning the carpet)

I have started making a list of the things in day-to-day living that we have problems with. Is this the types of things they ask you and if they aren't mentioned, should i mention them?

Any advice ro comments from personal experiences would be gratefully received, we both get really anxious before any dealing with anyone even vaguely official and so it helps to be as prepared as possible.

MarkyMarkD

"From my experience SS help is basically there to enable you, as far as possible, to have the quality of life you would have if you werent sick or disabled, without having to lean too heavily on family, friends and partners or pay for extra help."

I got the distinct impression from my local SS office that it was a case of if you have relatives or friends that'll do it for nothing then they can and we'll only pay if you really haven't got anyone who can help. Certainally when i got SS funding for my children's childcare they went to great lengths to ask me if i had any relatives who could babysit my children on a regular basis so that their money could got to 'where it is really needed'

Well, I agree with Social Services' attitude, if this is indeed what it is. Social Services, funded by tax/council taxpayers, should be a safety net for those who can't get support from anywhere else, not a method for families to avoid their own responsibilities for their relatives. In the same way, old people should be cared for by their families in the first instance rather than shunted off to old peoples' homes by relatives who are then all too ready to accept their inheritance.

I appreciate that you say that you are both disabled and I am sure that you do need help and support from Social Services - but I think that they are quite right to encourage you to explore avenues of support within your own family first before seeking it from them.

Just my two pennorth.

Fran

MarkyMarkD,

Your opinion on Social Services might be better put on the Discussions board.

Tran,

Have you got any help from Epilepsy Website? You might also find the ME association Website useful, and the Support Me Website for sufferers of ME / CFS looks informative and it has a chat page.

I think you should both be asking for seperate assessments as you have seperate conditions with different requirements.

ambersmita

I read this thread as I am increasingly saddened by the way good honest people who have had the misfprtune of becomming ill are being treated worse than criminals by governments (what ever colour they are!).

How nice to see that there are some kind hearted and helpful people in this world - what a pity that others are so judgemental.

Good luck to all of you, my auntie has ME and had to give up a teaching career because of it and it is an awful illness to suffer.

Good Luck and dont let them get you down!

Tran

Well, I agree with Social Services' attitude, if this is indeed what it is.  Social Services, funded by tax/council taxpayers, should be a safety net for those who can't get support from anywhere else, not a method for families to avoid their own responsibilities for their relatives.  In the same way, old people should be cared for by their families in the first instance rather than shunted off to old peoples' homes by relatives who are then all too ready to accept their inheritance.

I appreciate that you say that you are both disabled and I am sure that you do need help and support from Social Services - but I think that they are quite right to encourage you to explore avenues of support within your own family first before seeking it from them.

Just my two pennorth.

I agree with you to some degree markymark. I think that if there are kind friends or relatives who can regularly help out then this is good and shouldn't be substituted by some unknown carer paid for by social services. However the disabled person shouldn't be allowed to be seen as a burden on other family members. This could lead to resentment by the healthy family members and it makes the disabled person feel like a burden, damage their self-esteem and takes away some of their dignity.

My mother-in-law is the only relative we see. She works full-time (she has to!), she visits her elderly mother twice daily who live a couple of miles away (saving SS money there), she has her youngest son living at home who is disabled since childhood (again saving SS money) and she tries to help her other son out as much as possible (my partner) along with his wife (me) and her 2 disabled grandkids. In my case i objected to the social worker appearing to go to great lengths to find out if there were relatives who could help on a regular basis after i had already explained, very clearly, the situation. I was made to feel like i wasn't a worthy receipient and that i should expect relatives to help. I was made to feel that i should expect and make my mother-in-law do more. I felt this was unfair pressure being placed on us.

To be completely honest, if i had lied through my teeth and said that we'd had a huge row and didn't speak with any relatives and all my friends lived miles away then it would have saved them diving into my family dynamics and saved us uncomfortable feelings - and probably have been awarded more childcare!