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clarification of my last post

This started off as a reply to flowerpotgirl but grew too long.

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!

I can't fight any more...

From my facebook over the last 2 days:

1/ So. I get an incomprehensible letter that seems to say that they are charging the same for direct payments as they provide for home care and assessing your finances as if you are in a care home. The upshot is that from October they will take away £53.81 (nearly all of it) of my DLA to put in my care package account rather than £6.21 A WEEK! As since J, 3 and half years ago, left, I have been paying between zero £0.00 and the most £40 for my care when I can find someone I am mostly £6.21 week worst off so I think me and the Oxfordshire care system will part company. Just as I found a decent carer!!!! Better I pay direct out of my DLA if I can I think! Things just get harder and harder...

2/ It's 5.30 and I've not slept. I thought I could park the care package til they phone me on 31st August or later for a financial assessment and tell them I don't need one, I won't have a care package anymore instead, I'll employ directly with my DLA - the uncertainty and the weeks and months over the past five years I've been able to employ no one or the people I employ have been off sick and the hours are rarely fully filled, but I'm stressing now that no one I employed ever gave me a receipt or invoice as l been quite informal (for 4-7 hours a week mostly housework as you would expect) and now I'm stressing they are going to want it all back if I close it down with no invoices... then there is the small whisper of remembrance of a house filthy and untidy and washing piled higher than the fridge and I wasn't feeding us and that was when (BK) was 7 and at school and I was no where near as bad as I am now... But what happens if I am refused PIP when I am finally transferred, the council will be taking all that money, all the disability premiums would go as well as the DLA and I'd end up with about £4 a week to live on, and probably no carer either!!!! But then, a care package would be evidence with the transfer to PIP. And I'm still waiting for (BK)'s PIP mandatory reconsideration and if she doesn't get the PIP she won't be able to go to the performing arts course she got onto. I paid my NI and tax when I was well enough to work, I didn't ask to get this condition, I asked for help with my daughter for a decade, not neglect that led to her several traumatic brain injuries... why don't they just be fucking honest and gas us? No one cares, look at the poem about Nazi Germany, first they came for the disabled, but are they mentioned?! Two UN reports on the abuses of disabled human rights, but where is the Opposition and Media outcry? Sorry. ignore me. Oh, you probably are :p

How to get a stairlift when on low income

2004: Social Worker refers occupational therapist. OT assesses your need and tells housing association. Housing Association puts in stairlift (or, if in own or private property - landlord gets assessed by council, given grant, or owners get assessed, given grant. if on certain benefits, can all be done over the phone, with a click of a mouse from local govt to national govt to confirm you receive them. They can also help find company and deal direct if you need that)

2018. Stannah say it is condemned and not safe and unable to be repaired. they tell you HA keeps old ones in lock up to replace them. You make repair call to housing association. They take 3 weeks to get back to you to tell you that you need a grant to be given to them. You found OT. Get through to idiot. Make second call. Miss call back. Ring back and starts going through an entire assessment on the phone rather than get the message to the OT dealing with it. 2 months later you get assessed. you get a council letter telling you that your are provisionally not liable of costs. 1 month later Stannah comes to measure you up. 3 more months and an accountancy firm contacts you to say they are appointed by the council to verify your financial details (you get housing benefit and council tax benefit automatically each year as the same council computer talks to the DWP one to confirm you still get ESA, end off) but you say okay. you get a letter saying they are coming at 10.30 on the 20th June. they turn up at 9 am on the 13th June and bamboozle you with seven forms, take pictures of documents to prove you are in receipt of council tax benefit, housing benefit (paid by the council who 'appointed' them, ESA, DLA, rental agreements and letters from the HA (who get rent from the council directly, and they never wanted it confirmed before, they housed you with the HA when you were homeless, after all...). They come back this Monday with more forms as they had the wrong HA forms. Again at 9am. One of the forms confirms that their company gets 10% of the disabled refurbishment grant. So, my guess if this is an Oxfordshire thing and not a national thing and dear David Cameron, as PM, and next door constituency MP, has mates who own this accountancy firm, but I'm sure I'm wrong! This paperwork goes back to the council for them to decide if it is enough proof to tell them what they have known in their system since march 2003 and April 2004 (when they housed us and when we got the original stairlift) but as I actually have no rental agreement as the property has been sold on 3 times to different HAs I have no idea. Time is at least 2-3 more months to stairlift! Obviously Stannah and any other company doing any refurbishment work for disabled people must add 10% onto their quote to make sure they get the right amount, so this is certainly not about saving council tax payers money.

Welcome to the barmy world of post Cameron, almost post Brexit, Britain. A country run by Etonian idiots!

How to come into your home with shopping:

1/ park wheelchair in neighbours carport and hope the sister isn't there and swears at you.
2/ get out and limp to door. Knacker wrist unlocking it.
3/ slowly drag 2 of the shopping bags, one at a time, to house.
4/ sit on path and finish takeaway tea til shaking stops
5/ drag other 2 bags, one at a time, then last bag that was on your lap
6/ lie on pavement almost sleeping, too exhausted to move
7/ sit up and contemplate whether you a) try to pull heavy chair in over 4 different level door sill or b) knacker your back
8/ lie down again, as you can't sit up
9/ fetch some folded Abel and Cole boxes and lay them over door sill and drive in chair. Doesn't work. Pain intense in back.
10/ pop wrist out locking door
11/ lie on floor weeping with exhaustion and pain and the impossiblity of it and the fact they refuse to replace the door frame, only give you a self locking lock! (well, 2 and 10 sorted then, maybe)
Time to get in - 25 minutes.

Nationwide Windows and Doors 01788 224 606, coming on 22nd to replace lock but I can't make them understand the pain coming in and out is causing. Is also knackering wheelchair's suspension and the wheelchair maintenance people for Nuffield Hospital have had their funding cut, so who is going to fix her? I was supposed to get BK to take a picture and send them as I can't do smart phones as I can't do touch screens, but been too exhausted and ill (both of us). We had run out of gf bread, gf pasta, potatoes, soya milk... so I had to go out. We are £2000+ overdrawn so it is cash only for groceries so no one suggest on line shopping please!

Imprisoned by incompetence!

I have a lovely new front door. Despite many things wrong with the properties on our street, the housing association decided to spend money on expensive looking new doors (perhaps they are selling us, lock, stock and barrel of chavs?).

It does not self lock. so, supposing the door frame and sill did not have three different height levels and was a cm lower than the path causing four painful and quick sudden bumps severely hurting my back when I go in or out of my house, and I could reach the door handle that needs to be lifted up and the lock to lock the door, I would have to go down the path, turn around, providing the neighbour hasn't boxed me in - else that would be a 90 degree turn - turn around, come back around the narrow pathway, lock door, reverse down narrow path without falling off the roughly 20-30 cm drop into the lawn or the neighbours wasteland, onto the carport, unless of course, the neighbour has blocked me in, in in case, never might all the pain and risk, I cannot do a reverse 90 degree turn in the chair. Oh, I suppose I could scratch their car or worse.

Or, in effect, I am imprisoned in my own home. they are coming on the 22nd to put in a self locking lock into the door, but are not fixing the other problems!

Meanwhile, it is six months since my stairlift broke!

And BK's PIP has been refused.

Life as a disabled person in Tory Brexit Britain just gets worse and worse!

A little Doctor Who feminist rant!

Look, I am excited about Jodie Whittaker and there is nothing like a few on-line rape and death threats to make you dump your bio-techno SF reservations on the mechanics of gender swap regeneration and your concerns for real trans children and teens with the way it will be dealt with, but it isn't a female Doctor we need. Okay, across countless platforms and 55 years (the book series are not mentioned here but I can only think of 3 female writers off the top my head across Target, Virgin and BBC) I can count on the fingers of one hand the female writers. Where are all the women writers?! I came yey close twice to being published, how many more of us also didn't smash our way through the DW low glass ceiling for writers?

https://www.youtube.com/watch?v=hH402FEqLKc

Happy Birthday!

To the wonderful toomerrymaiden - I hope you have a fabulous day doing things you love, surrounded by people who love you, and eating lots of cake x

Belated Happy and Love!

A belated Happy Christmas (or holidays or Hanukkah or whatever it is you say or celebrate, we say Christmas in the Uk, people or all minority religions, of which Christians are the biggest, as most in this godless country are agnostics or atheists or haven't really thought about it at all... but Happy Christmas can offend some of my American friends so...)

I hope you all had a wonderful time celebrating with family and friends and will have a wonderful time partying or whatever you do to welcome the new year, and 2018 is kind to you and kind to us all.

I am poorly, and lack brain spoons and stumble about in a brain fog whilst suffering horrendous fatigue and pain you cannot imagine in every bit of me (I believe me earlobes are pain free! ;) )

That said, Christmas was peaceful. BK had the day off work and we slept til one, opened our pressies from Santa and family, then slowly, together, made the 'nut' loaf and got all the veggies and trimmings on at the right time, just in time to sit down in my bed to watch Dr Who with Christmas dinner. We crashed out after Call the Midwife... So when people say, how was your Christmas, I say quiet, but lovely. Which is true :)

Last night of the Nutcracker and the Mouse King tonight, and BK is at the wrap party, but leaving early as I need antibiotics and the earliest I could see an out of hours GP was at 9.15 (I phoned 111 at 5!) and there are no wheelchair taxis and no buses after 10 unless you walk 3 miles to Abingdon town centre and get the bus to Oxford and then the train back to Didcot... (Because to some civil servant it made sense to close Didcot out of hours and then build 4000+ new houses and make it a Garden Town...!)

Anyway, it is probably a urine infection, but I've had them go to my kidneys, I'm in agony on top of the neuro pains and muscle spasms and aches everywhere and I don't want to end up weeing blood before my own GPs are open on Tuesday!

Enough of me!

A (belated) Merry Christmas and a Happy New Year to my flist <3

xxxxxx

Having a bad day, a really bad day...

From my facebook coz I'm too tired...

You know how badly you've been coping and how pathetic you are when you finally have spoons to sort out kitchen cupboards and sit sobbing on floor when you finally realise that the collection of irreplaceable ice cream tubs you up-cycled and used for storage containers for 17 years have slowly been thrown away by your carer/cleaner and it has taken you months to realise. I had 20+ and now only 3. Every time a meal I froze was defrosted and eaten they must have been thrown away not washed up. I'm so stupid not to have thought to tell her. 2 weeks ago I started checking the rubbish but too late. Much too late. A sign I suppose. What makes me think I'm ever going to be well enough to cook from scratch and meal plan again. Might have well give up and carrying on eating the shit that is making me even worse

Really knocked me. I had 4 clear days with [BK] working almost full time to try to get back to coping and pacing and meal planning and cooking. But still sobbing and so depressed. Such a sign of the deterioration in my memory and communication and observation and IQ loss. I neither noticed their slow disappearance nor thought to explain they were never rubbish. I know they are just bits of plastic but they were important to us. A history of cooking and family and the small company's designs too.

Can I just say once I had a photographic memory, super organisation skills and an IQ well over 150. I sometimes think I've lost more than I ever knew. For a long time I coped beyond expectation with increasing disability and exhaustion and pain and an unsupported and many years undiagnosed autistic daughter with ADHD. I seriously think only [] knows what I've lost in my mind.

Numb with grief now, tears dry, shut down half done but I have no one to talk to so that doesn't matter. Soup decided on using veg in fridge. Banana and cup of tea. Will take long time to recover from loss of both containers and their history and a new light on the loss of my mental reasoning


So self-piteous I hate myself! But there you go... Apologises for all you lovely people who got back to me on LJ on my last entry. I feel so drained and depressed and the pain levels have been off the scale - combination of not enough or the right support in the home and a daughter falling apart at the seams at home but trying to keep it together in her theatre classes and part time jobs. the meltdowns, the teenager strops, the constant chatter or the constant being ignored really robs all my mental and emotional spoons. to every person who told me when she was small it will get better - YOU WERE WRONG!!! An ADHD toddler with autism steals physical and mental spoons but not emotional ones and certainly not hope...

You know what is crazy - I struggle to meal plan and forget how to make a cup of tea, sound vibrations trigger seizures, lifting a few bits of washing up of rubbish leaves me indescribably exhausted or in pain, I feel almost suicidal for a few moments after some of my daughter's female teen plus autism hate you rants, but, as long as I'm well enough to write, I can (mostly) carry a complex two AU temporal all over the place, fic... or maybe not, as I've not written Crossing china for days and the last chapter of Poisoned Minds awaits.

Can someone talk fannish stuff to me, or foody stuff, or tell me what they think of my writing - someone distract me, please...?

Falling apart at the seams

Writing was keeping me sane. I have no mental or emotional spoons left.

I am burning myself up with anger, fear, loneliness and pain. The stress of looking after my daughter, her meltdowns, her physical needs and her normal teenager stuff is draining me so much, on top of the constant fear - what happens when I'm transferred to PIP for DLA. I have lost the capacity to cook, meal plan or budget, and my daughter just burns my overdraft on Amazon as I trusted her with my bank stuff when i was recovering from the flu and having several seizures a day (which seems to be when I lost most of my flist on LJ and my few remaining RL ones...)

Everything has come undone. I'm further on the spectrum than my daughter now, or worse at keeping the flaps and ticks and meltdowns and shutdowns at bay. but no diagnosis, as to do that you go private and out of the county, as their is no budget and no staff. no support for the seizures as they are not epilepsy or stroke, so out of the neurology budget, but not functional as a result of child hood abuse, so not in the remit of psychiatry. they are severe ME/CFS, yes we will acknowledge it causes these symptoms and not in your head, but there is nowhere to go. Drugs for neuro pain and seizures react badly with ME. As does pain relief. I have a care package, £72 a week, and interviewed people, some who seemed promising, but like last time, obviously taking the piss. Agencies come expensive and are no help at all. And it's - you don't need the help coz I can't find it so they want the money back, despite taking £25 of me a month to pay for my 'care' so it goes from one account I can access for everything to another to which I can only use to pay for housework and washing that no one wants to do for £10 an hour all due to the fact my DLA was raised £1 a week... I have a cleaner who is lovely but possibly the most daft and silly person (I don't want to say stupid, as she cleans well) but can't understand instructions that are repeated - I am in the middle of sorting that, leave the piles as they are... don't throw away cardboard or paper if it has something written on it (the Microsoft details of BK's new laptop has gone, and in getting it fixed under guarantee, they locked her out of her documents and I have to pay a hundred bloody quid and she hates me). At least my kitchen and bathroom are clean and not gonna grow germs :)

God, I am such a lonely, pathetic individual, alone and lonely, sick, and all the social skills and all the work in therapy I did, all that hard work in the 90s to deal with a NT world and recover from serious sexual abuse has all come undone and I'm bonkers, totally bonkers.

I just want a hug, but I'm touch phobic due to the abuse and it hurts due to the ME and there is no one out there to hug me anyway and I'm so tired. You know what, this govt are cowards, don't just cut their care and benefits and charities and agencies and care and just round us up and gas us. I'm so fed up with left wing friends on Facebook sharing stuff about Trump and ignoring the systematic and grave (UN words) abuse of human rights of disabled people or European citizens and immigrants or children or grandchildren in their own country!

My phone screen broke. BK tried to fix it. She couldn't. We found one on ebay but it doesn't have internet any more. I can't do touch screens due to spasms and tremors. anyone recommend a keypad internet phone - doesn't have to be smart, getting me on fb and lj and my emails will do!

Moan over... sorry...

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