Today my OT came round to speak about the panel turning down funding for my chair. I think from my face she could see that I was incredibly disappointed and annoyed that the panel had requested more information. I was quick to reassure her that I knew it wasn’t her fault but having spent months sleeping on a sofa I was hoping by now we’d be arranging delivery and installation of a chair not still arguing for one. I gave her two medical reports which will hopefully appease this panel of people who have never met me, seen how difficult it is to do everyday things and all the adjustments to our home and lifestyle that we have made already (the most expensive of which have always been at our own expenditure). When they say there is a need to cut money out of budgets it is not until you are in the system that you realise just how easy it would be to simplify things.
Here the Empire Strikes Back as in addition to this panel I have to apply to my county council for financial assistance towards other commendations that my OT has said are needed such as a bed that will run in to the 5K-10K price bracket if I was to get it with all the different specifications she feels are necessary for me to have a double bed that I can share, I mean I understand as a disabled person I should be on my own and have no friends let alone a partner that needs some bed to sleep on! If I was single my GP would arrange supply of a hospital bed I was told! Whether this is funded or not will depend on whether after a number of calculations including my income from my DLA which is already being spent on my motability vehicle and any other income I am now entitled to because I can no longer work, plus my wife’s income. It does not take into consideration the family outgoings so, mortgage, council tax etc and all other things such as our dependents, and my wife and other family members acting as unpaid carers. Someone will be coming out to go through everything with me next week.
Then there are the adjustments that are needed around the home, a wet room and wheelchair access being the most obvious and needed soonest for funding for these I have to apply to my district council South Norfolk, who will then send someone out to do a financial assessment, they will also take into consideration my income (minus my DLA) and my wife’s income, our savings but they will off set this income against our expenditure. They also will not make any deductions for the amount of money saved by my wife and family being my primary carer’s. If however I take a lump sum from my pensions that I have been paying into since I first started work this will exempt me from any funding.
Alternatively my wife could give up work become my full time carer and we could have homes specifically designed to my specifications if necessary built from new for me and all funded by the various taxes paid into all of the above departments – and by doing this we would no longer be paying any of them taxes, something not quite right about that. Surely equipment needed for maintaining independence should not be means tested, I mean employers are expected to put in the necessary equipment at their own expense or with government subsidies, why should it not be the same for freedom at home. I mean if anything and my wife is working full time in addition to doing much of my primary care and therefore saving masses already we shouldn’t be penalised financially for this, or maybe we should?
Finally as a really bizarre twist I could apply for funding under the disabled parent’s protocol and apply for funding for a carer/pa to be with me at all times I am alone with my LG to ensure I do not fall asleep and if I do there is someone competent to look after her, they would be able to help me with my forms, getting out and about to appointments etc and this fund could run into the tens of thousands. It is once again means tested and not based on my needs and capability to have the right to parent safely as a disabled parent. So once again if my wife was to vastly reduce her working week or work a far less stressful job we would be eligible for yet more funding. This comes from yet another pool of money and would need further assessments to be made. So is this a case of Return of the Family as between them my wife and my parents are this free carer/pa that I do not access.
Now wouldn’t a much simpler way of doing things be to have one person capable of doing an assessment and making a decision judging it on their own qualifications and personal assessment of your needs and not the more you already contribute the less you get. By cutting down the number of different assessments and everything else must be a money saver, cutting down the number of hoops and red tape needed to jump through must save money, if a nobody new to the system can see all this why don’t the numerous consultant companies employed to do streamlining at £50-£100 an hour see this or speak to the service users who can see it. Who knows, maybe I’m still a bit pissed at knowing I have yet another sleepless night ahead despite trying everything, and that the harder my wife and family work looking after me and our children etc the more we are penalised…………………