Also, thank you sysann and moth2fic for you cyber hugs and support xx
Just to clarify my panicked rant. My care package is a direct payment to employ people for home help/domestic help for 6 hours a week at £10 per hour. I've not had people to fill that regularly now for over 5 years. 4 years ago my DLA went up by a pound so they said I was now liable to contribute that to the costs. So they took £5.85 from my account to put in back in the other account with the rest of the money from my direct payment. Six months ago it rose to £6.21. As I am never paying out £60 in care, more like between zero and forty over the past five years, I have been losing money. Now, regardless of circumstance, they will be acting as if they provide you with direct care with assessments on how much to give, and assessing you financial as if you were in a care home. Result, from 1st October they will be taking the entirety of my care element of the DLA to pay for care I do not have and cannot find. It will probably be easier to find a cleaner cash in hand, as probably the reason so many people never turn up after the interview is they find out I must pay them with a cheque and make sure they or I pay their tax. But I don't know how to end a care package. If they want to audit me, I have never had an invoice from anyone I've employed, although they tell you that you must. If my refusing a care package shows up on the Family and Child Team IT system too , I will have hell to pay about not caring for my daughter, etc, even though its my not her care package!
15 years ago, Oxfordshire County Council was the worst council in terms of funding and providing any form of care. obviously as everywhere else gets worse and more cuts are enacted, things will get dire here.
In essence, I have lost my care - as I cannot lose my DLA. I have complex dietry need, with multiple allergies, as does my daughter, and Oxfordshire Primary Care Trust no longer prescribe gluten free bread, and any safe ready meal costs a fortune and cannot be audited for, unlike if I could use Wiltshire Farm Food, for example. Also, what happens if the transfer from DLA to PIP is refused and I have to appeal? I will be on basic rate ESA - leaving me with between £4 and £20 to live on a week for everything apart from rent. I know of other people with wheelchairs etc who have had PIP refused when transferred from DLA. Or rather reassessed.
The irony is a care package will give evidence for my needs for a PIP a appeal. It would also access me a social worker to write a letter to submit for evidence at an appeal.
PIP/DLA is based on need. The council say they are meeting that need with their 'care package' even though you sort it out yourself, therefore they will take it. Whether I am finding care or spending it doesn't matter. If I don't spend it they ask for it back now, but don't allow me to keep all the years and months worth of £6.21s and £5.85s. This will be no different.
Bureaucracy doesn't care, but it does get it - it wants to cut and cut its budget and cut money anyway it can.
I can only deal with one thing at a time. I must be able to get out of my own house. I must get them to come back and fit an new accessible door frame. Then I must get my wheelchair mended after the damage done by the threshold and sill of the door, and hope it isn't too much, else I must fight again to get prescribed another chair from the Oxfordshire Wheelchair Service.
At some point I will hear about my daughter's PIP mandatory reconsideration, and it is a 90% cert refusal and that will mean an appeal.
They have finally begun the assessments of those on DLA for an indefinite period, so that is only a matter of weeks or months away now. I need to make a document that outlines in detail how I can wash, toilet, dress, feed, cook, walk etc, as unlike before, when I had an outreach worker from the carers charity, who came to my house for 3 hour sessions, and we would take 3 sessions if needed, and they knew me, I will get a two hour slot in an uncomfortable, barely accessible room with a CAB volunteer who won't know me. I've been meaning to do it for six months, but I've had so much else with leaks, damage, a break in, a carer having a breakdown and trashing my house...
Meanwhile, BK is self harming, suicidal, not coping with all she needs too, and I am to stressed and brain foggy to help. Things haven't been this bad with her since she was 11. Not long term. Obviously it's a combination of losing her PIP, the stress of wondering if she can cope with the course even if she gets the PIP back, and her father's recent sexual assault on her. It's not trivial. But he assaulted me too, so I'm not doing that well, either. I'm having flashbacks to my childhood abuse for the first time since I was in labour!
And we're nearly a £1000 in debt but the heatwave means I can't cook from the dried lentils and sack of rice, so it keeps going up and up. I've already used up the freezer and tin cupboard. Mum restocked my freezer, but half of it has listeria so we can't eat it! We've also run out of red lentils, so I have to have the spoons to soak the brown ones the night before and then be well enough to cook stuff from scratch.
I do intend to phone the social work team, not the finance team, and ask how I refuse a care package and say I would be better off employing directly from my DLA if the council intend to take it. But I have 7 or 8 weeks until the finance team will contact me and just under 3 months until the new policy begins. So it's mothballed for now.
As I said in my last post, I have no fight left in me. It's still true, no fight, I feel like I can no longer cope. But I will have to, won't I? I made friends with, supported, and seen too many chronically ill and disabled people live and die on the streets of Oxford over the last 2 years, to give in.
Lots of hugs back. Sorry to off load onto you. But it's hell! As you can read!