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    #16
    Hello Derek,

    Sorry i missed your post, I just found it as i wandered around the pages , Hope you keeping well as you can be , The better half has just looked over my shoulder to see who i am talking too, and said thats where we where last year , and i hadnt noticed ,but we stayed in a cottage in Henley Downs is that near you , I do remember sitting in the car on the seafront in Bex Hill , And yes We are in the same boat like many others , It seems they do not care a jot , We had saved up for what we wanted to do , when we retired , but some of them are now not possible as i am sure they are the same for you , But instead of seeing that ,the powers that be only care that if you have money , they arnt going to help you ,unless you become like so many on benefits , Have the attitude that if we dont work we can live on the state , and have loads of kids and sit back and live a good life , It was never in my mind that i could do that , whatever the reason ,and now i have to, it isnt making me feel any better , Rant over , hope your well mate and the wife too, Its been a long time since we chatted ?

    All the best to you

    Regards
    pete ,

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      #17
      Equipment Validation

      We have a little income from the wifes pension, and A very small works pension and i do mean small , however this was considered to be sufficent for us to have to do all the adaptions we needed to do and only if and when we had spent every bit of savings we had saved up
      Last edited by Robyn Copley-Hirst; 13 August 2012, 10:38. Reason: removed commercial advert link

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        #18
        wrexham
        forum member we are having work done at the moment, and we are having to pay for everything because we have savings

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          #19
          Originally posted by chandan View Post
          We have a little income from the wifes pension, and A very small works pension and i do mean small , however this was considered to be sufficent for us to have to do all the adaptions we needed to do and only if and when we had spent every bit of savings we had saved up
          Hi chandan,

          I think it would have been not so obvious if you had altered my spelling mistakes when you used part of MY post #9. to do whatever you wanted to do , i doubt it has anything to do with MND .

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            #20
            We are just having plans drawn up to make a small single storey extension (bedroom and wet room) and basically told don't bother with a DFG you have too much savings...it's not savings it was a critical illness claim to help us survive and benefits are a no no basically too much pension if i retired early and working part time isnt an option as we'd have too much to claim any benefits....but it's o.k. i saw a bloke today working on a market stall ask if we needed help and in his back pocket was a book "Looking for work!" ummmm signing on perhaps and working !!!

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              #21
              Hi, We were informed we could not have a DFG because we had too much income coming in, mainly my modest pension. The DFG process involves a government software tool that didn't allow full consideration of our high outgoings including our mortgage payments. I wrote a letter of appeal, explaining our circumstances and our local council have reconsidered our case and are now going ahead with providing the funding! I understand that this is not DFG funding. This is the best thing that has happened to us after the devastating diagnosis of mnd in April. Good luck to everyone on the Forum. x

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                #22
                I started this thread and, since that time, have learnt that we will get no help towards adaptations. Had we paid money into buying additionall pension contributions rather than saving, it may have been a different outcome. Trying to be positive!

                Magic

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                  #23
                  Hi Magic;
                  I was turned down for a grant towards the wet room. I was also not eligible for day care, but this was differently means tested then. It was means tested on the affected persons money and not joint income and savings. So whilst you are not eligible for one you might be for others types of help.
                  Good luck and don’t be afraid to ask, Terry
                  TB once said that "The forum is still the best source for friendship and information."

                  It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                  Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                  Comment


                    #24
                    Originally posted by magic View Post
                    I started this thread and, since that time, have learnt that we will get no help towards adaptations. Had we paid money into buying additionall pension contributions rather than saving, it may have been a different outcome. Trying to be positive!

                    Magic
                    Hi Magic, Sorry to hear that the system isn't helping you ,it seems a one sided thing ,just had to share this with you ,I could not believe what i was reading but the upshot was and still i cannot understand how this is anyway fair, but here goes,

                    The young woman came into the hospital for a check up, her English not that good despite having lived here for some years, but the gist of it is, she was expecting her eight child,and explained that she was the only breadwinner in her family and having babies meant she could support her grandma, who acting for the young lady called the DWP and explained she felt her daughter could cope no more with all the children, and with another arriving soon, they said the kids would have to go into care ,but here it really gets very good ,they agreed it was it was a very good idea that if grandma became a foster parent, well problem solved , grannie has been getting £700 per month for each child and when number eight arrives soon that will make her income rise to, £67,200 a year for a family that has never worked or paid anything into the system, What a wonderful country we live in ,when the vast majority work all there lives and get a pittance of a pension , It seems we cannot do enough for others , with the additional benefits of free housing ,tax ,free council tax and school fees all free ,that equates to a salary of around £148,000 a year , not bad eh , and you wonder why there is no money for the genuine cases. Cannot wait for the changes to DLA to arrive !!!!!!!!!. kinda makes you wonder how many more cases are like this one.

                    pete

                    Comment


                      #25
                      Continuing healthcare funding is not means tested and when MND starts to bite everyone must apply. Consider your bad days and worse days to come whilst applying. After applying, appeal for more. Your Local Authority will be reluctant to make you aware of this scheme.

                      All VAT on all purchases for MND are redeemable. e.g. home adaptations
                      Copyright Graham

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                        #26
                        Have just been looking at something very similar as my folks have had bathroom conversion, local OH and Authority helpful but the main "guidance" was to go it alone as they couldn't guarantee how long it would take to get the building contractors to do the work (and time is precious commodity.) The form took a bit of finding but it seems that this, and a number of other things, are VAT exempt...so at least they get relief.

                        Form is right at the bottom, section 10.

                        Here is link, hope it helps - http://customs.hmrc.gov.uk/channelsP...nt#downloadopt

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                          #27
                          Why not offset the cost of MND against local authority care charges?
                          Copyright Graham

                          Comment


                            #28
                            Good idea Graham. I think in our area, the local authority care charges are in the region of £850:00 per week. I understand that other local authorities may charge even more. It soon mounts up so it is likely that care charges will cost many thousands of pounds more than adaptations to your home. It is a good argument to use when you are trying to get help with the costs of adapting your home.

                            Comment


                              #29
                              Inelgibility for a Disabled Facilities Grant is not necessarily the end of the story as far as having your adaptations funded is concerned. Below is a copy of a complaint submitted to a local authority on this very subject. They have not responded yet but it has been referred to their lawyers which is usually a good sign. Obviously no liability is accepted for any incorrect legal advice given in this post, just sharing the information as it may be a matter of interest.


                              Mr xxxxxx suffers with multiple sclerosis, as a result of this he experiences limited mobility which impacts on his ability to manage personal care routines such as bathing, showering and toileting. Mr xxxxxx has recently undergone an occupational therapy assessment in his home the conclusion of which was to recommend that he needs a major adaptation to his bathroom. The proposed adaptation would consist of a conversion to a wet room and the installation of 2 ceiling hoists, a Clos-o-Mat toilet and a sliding door at a total cost of approximately £11000.

                              Mr and Mrs xxxxxx were assisted to apply for a Disabled Facilities Grant however their application was unsuccessful due largely to Mrs xxxxxx's current level of income. Based on the information provided to me it is my understanding that the position of xxxxxx Council is that Mr and Mrs xxxxxx must therefore fund the full cost of the adaptation themselves.

                              Specifics of Complaint

                              It is submitted that Mr and Mrs xxxxxx should not be required to cover the full cost of the adaptations themselves.

                              Local authorities owe a duty under Section 2 of the Chronically Sick and Disabled Persons Act 1970 to meet the eligible needs of individuals who have been assessed under Section 47 of the National Assistance Act 1948. Of particular relevance is the duty owed under Section 2(1)(e) which requires:

                              “The provision of assistance for that person in arranging for the carrying out of any works of adaptation in his home or the provision of any additional facilities designed to secure his greater safety, comfort or convenience.”

                              Whether or not a need is eligible is determined by the Prioritising Need in the Context of Putting People First Guidance 2010 (hereafter referred to as ‘Prioritising Need’) which divides individuals’ needs into four categories: low, moderate, substantial and critical. Prioritising Need allows local authorities to choose which levels of need they meet based on the resources available to them. xxxxxx Council are currently committed to meeting all needs which fall into the critical and substantial categories. For the purposes of this complaint it is assumed that Mr xxxxxx’s need to be able to wash, and use the toilet safely is at least a ‘substantial’ need and therefore must be met.

                              Housing authorities owe a duty under Section 1 of the Housing Grants, Construction and Regeneration Act 1996 for the provision of facilities for disabled persons in their dwellings.

                              In practice these two duties regularly overlap, individuals who are assessed as needing a major adaptation are assisted to apply for a DFG, if successful they then use the grant to pay for the adaptation and thus their eligible need is met.

                              There will of course inevitably be a proportion of applicants who fail the means test for a DFG just as Mr and Mrs xxxxxx have done. It should be noted that simply by assisting Mr and Mrs xxxxxx to apply for a DFG xxxxxx Council has not discharged its statutory duty to meet Mr xxxxxx’s eligible needs.

                              Department of Health guidance LAC (90)7 has clarified the way in which local authorities are expected to deal with situations such as this. Paragraph 17 of the guidance states:

                              “The Second instance where the [social services] authority may find they have a continuing duty to provide assistance concerns cases where a disabled person asks the [social services] authority for financial assistance, under section 2 (1) (e) of the CSDP Act, with that part of the costs of an adaptation which he is expected to finance himself in the light of the test of resources for the disabled facilities grant. On occasion this could be as much as the total costs of the adaptation. In such cases, the [social services] authority still has a duty to assist. However, in order to maintain consistency with the new arrangements for disabled facilities grants, the [social services] authority may wish to charge for their services (under Section 17 of the [Health and Social Services and Social Security Adjudications Act] 1983) (HASSASSAA) to recover the full cost of any assistance given, provided that they consider that the client is able to afford to repay this.”

                              It is therefore submitted that in order to discharge its duty under Section 2 of the CSDP Act xxxxxx Council must fund the full cost of Mr xxxxxx’s adaptation. Recovering from him only as much as he can reasonably afford to pay under Section 17 HASSASSAA. It should be noted that under HASSASSAA Mr xxxxxx is entitled to request an assessment of his ability to pay based on his sole income (rather than the joint income of him and Mrs xxxxxx as was used for the DFG application).

                              Desired Outcomes

                              1 – It is requested that xxxxxx Council funds the full cost of the adaptation to Mr xxxxxx’s bathroom recovering from him only as much as he can reasonably afford to pay based on his sole income.

                              2 – It is requested that the adaptation is carried out ASAP. It is now approximately 2 months since the original assessment was carried out. Paragraph 124 of Prioritising Need states that:

                              “Once a council has decided it is necessary to meet the eligible needs of an individual; it is under a duty to provide sufficient support to meet those needs. Councils should provide support promptly once they have agreed to do so, but where waiting is unavoidable, they should ensure that alternative support is in place to meet eligible needs.”

                              Since Mr xxxxxx’s needs cannot be met (even in the short term) through the provision of any alternative service it is submitted that the only appropriate course of action is to commence work on the adaptation right away.

                              Please now investigate this complaint under the Local Authority Social Services and NHS Complaints Regulations 2009. I understand that under Regulation 13 my clients can expect acknowledgement of receipt of this complaint within three working days. Please also copy me into any future correspondence, including the full written response to the complaint.

                              Comment


                                #30
                                I really hope you have a successful outcome for all our sakes. Good for you for fighting back.

                                Magic

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