Independent Living Fund
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smicker rossp...@hotmail.com
The statement below has been forwarded to me by an interested party.
It seems to me that the only reason that relatives who live with the DP cannot be paid is because the Gov, some 9 years ago drew up a trust deed that is obviously inappropriate. What do you think and how can this be cracked? Surely once the Gov is shown it is not a good trust deed the Gov can draw up another or alter this one?
smicker The "Trust Deed", which governs the way money provided to the Funds can be released, has been drawn up by central government. Where conditions are stipulated by the Trust Deed, this means that the Trustees of the Funds, also appointed by the government (through the Department for Work and Pensions), have no power to use discretion in this area.
The ruling of the Funds not being able to provide monies to pay for a close relative who lives in the same household as the applicant or Funds user is written into the Trust Deed, which means that the Trustees of the Funds do not have the power to exercise discretion in this area.
As such, I am afraid I am unable to comment on the thinking behind the purpose of this clause, since this will have been decided by those within central government (with their solicitors) at the time it was drawn up (early 1993).
If you do have any 'burning issues' that this is causing an obstruction to, please do give the Customer Services Team a call, and we will be very happy to discuss this in more detail, and perhaps offer alternative options that may be available to you or the person concerned. Our switchboard number is 0845 601 8815, and simply ask for Customer Services.
I look forward to hearing from you soon.
Jeff Macbeth Customer Services Manager for the Independent Living Funds
removespam j...@ntlworld.com
You are going about this like a bull at a gate. Firstly DP from a LA in not ILF. You have been badly advised by Dr Don Moody hopefully he will rectify this and advise you to understand what you are campaigning for ..All you are doing at the moment is wasting every bodies time.
http://www.ilf.org.uk/guidancenotes.htm 10. EMPLOYING Personal ***istants 10.1. Who may be employed ILF awards cannot normally be used to employ a close relative who lives in the same household as the applicant.
/copy "Normally" does not mean a relative can't be. j
"Derek Hornby" derek.hornby...@btopenworld.com
Not necessarily inappropriate, just a case of some people don't like the rule.
Social services do have a duty to ensure the money is used for the benefit of the disabled person.
If live in family were allowed to have the money, this could (note I said could not would) result in a situation whereby family take the money, and don't give the full help the person was entitled to.
But anyway, should family help it's disabled members for money?
As mums, mums, maybe Amanda and Rachel may like to comment, and as a dad of a disabled son, Jim may wish tocomment.
I upt it to mywon mum would she have give me more help, or just same, if paid tohelp and this is what she said: "a mum will help her children because she loves them, not because she wants money from them" Derek
"Peter V Rawlings" peter_v.rawli...@ntlworld.com
Whilst your mum's comment was undoubtedly a heartfelt and widely understood 'bottom line', it defines more of an 'existence' than a life, perhaps. More funds available mean more choices. More choices are the underpin of 'quality-of-life' once all the essential 'needs' are fulfilled.
Many disabled folk have fewer choices (I will <***ert>!) than most ABs.
Whilst a varying number of these are a function of the disabling condition, a number of restrictions are placed by the typically low disposable income.
Now you <may> have always had access to sufficient funds to support your choices, but that is a variable - and a perception - that is dependent on the individual. I suspect there are many working on a shorter 'shoestring' than you are.
The other important aspect (and I mean it generally, for all relative carers) is that some potential carer-relatives may have aspirations to a life outside the home! These days, that is far more likely. Therefore the 'opportunity cost' of a relative foregoing a career is 'major shakes'! It is possible that older generations of relative-carers were resigned to their domestic option.
Pete.
"Derek Hornby" derek.hornby...@btopenworld.com
Who said the funds are not available?
If onoe has been ***essed as needing a pa, this will be funded by social services, either directly, or via direct payments.
Correct, and the choices are there, just ask for the help, and if entitled you get it, if not then you battle for it, rather than accept second best.
Haven't you been reading all posts from Jim, myself, and Rachel, and I mean all?
Well that all depends on what the person wants, disabled or not.
Don't ***ume that all the able-bodied have a hgih income, many on minimum rate of pay.
Or, I may not accept second best.
Peter, do you actually understand what this discussion is about?
Smicker is arguing for, not against, live in family being paid to care for their brother, sister, spouse, who's disabled.
There is no funding issue, only an issue about should family be paid to do the job.
If I go to the doctor, an interpreter is paid, by health authority, to ***ist with communication.
The interpreter will only be paid if he/she is *not* a member of my family.
If a communicator guide helps me out there, he/she will only be paid if *not* a member rof myfamily.
And I think Racehl mayconfirm, if Rachel's daughter has a pa, this pa will only be paid for it *not* a membe of Roz's family.
Derek
"Peter V Rawlings" peter_v.rawli...@ntlworld.com
It's funny - I read your predictable and irrelevant tosh (immediately above, in particular!) and then reread my posted response to your preceding one.
My response was even-handed and discursive and talked of 'choices' it would be desirable to make - to enhance a quality of life above the existence level. Your typical response was to go-for-the-....ankles(!) and to throw irrelevance onto the formerly, 'calm waters'!
The original contention was that a relative-carer should be paid a 'going rate' for bought-in labour of the same type. Your cods' is just stupid!
Pete.
"Derek Hornby" derek.hornby...@btopenworld.com
Why do you continue to be rude, do you behave like this with your family?
YOU clearly said this: "Whilst your mum's comment was undoubtedly a heartfelt and widely understood 'bottom line', it defines more of an 'existence' than a life, perhaps. More funds available mean more choices. More choices are the underpin of 'quality-of-life" And I gave true examples to show that funds are available, and so choices are available, If you can't or won't make your points clear, don't blame others.
You also said: "The other important aspect (and I mean it generally, for all relative carers) is that some potential carer-relatives may have aspirations to a life outside the home! These days, that is far more likely. Therefore the 'opportunity cost' of a relative foregoing a career is 'major shakes" So what's your point, are you saying your wife wants to be paid, to care for you?
I have already made it clear my mum doesn't wish to help me, or anyone else in the family, for money, what's your problem with this.
Derek
"Peter V Rawlings" peter_v.rawli...@ntlworld.com
Unsurprisingly, it's probably your extreme 'uniqueness' that flies in the face of that which 'conventional wisdom' would reason.
No surprises, but an age-old disappointment that you still feel-the-need to spray the 'sympathetic minimalism'(!) so freely. :-( Unless you want to sing from a different sheet (or even juggle the words a bit!) the same repetition is very wearing.
Pete.
Rachel Sullivan rac...@thbarker.demon.co.uk
This is absolutely right.
This can also be a problem with hired helpers. Ask me how I know.
Well, I have to say I felt uncomfortable about this - but not for long. She's quite right. Provided she can afford to do that. And let's not forget, the children aren't paying. The state is. And if they can pay a stranger, they can pay family. If it hadn't been for my Mum, working hard at age 73 to keep the family business going whilst I cared for Roz full time, I would be destitute by now. If I had been working for someone other than my family, I would have been sacked years ago. How do I live then? Why *should* I have to claim Income Support and wonder how I am going to pay the mortgage because I gave up work to care for my daughter? And what happens to my pension? Ha! What pension?. It is by no means a foregone conclusion that we can get enough funding to pay for someone else to care for Roz whilst she is living in the family home. It's the ***umption that some member of the family will give up their work/career/life and live below the breadline so the Government can save money that really upsets me. The funding that we have now is a recent thing - no-one offered us any help at all until I started hustling for it - and it's not enough to let me work properly. So it's even less of a possibility that we (or anyone else in our situation) can find and hire a full team of carers for Roz, whether she lived here or not, allowing me to work full time again. We haven't been able to find *one* reliable carer for a mere 3 hours a week, never mind more than that. I am told that even if you can find these people, they don't stay long. Caring for someone with a brain injury is quite stressful and its not just a case of getting her up and putting her to bed - I am perfectly capable of doing that and working as well. It's all those hours in between. I don't want her just sitting in front of the TV all day and it's not safe to leave her alone anyway. Family members (read Mum or daughter in most cases) save the state billions of pounds when they give up work to stay at home and care for their loved ones. Is it right that they should do so unrewarded - that they should be living in penury? The care system is overloaded and couldn't possibly provide sufficient care for every person that needs it. So why can't the state help the families out? Because the Government attitude is like your Mums. Families do it for love. Yet this Government does everything it can to encourage parents to put their children into child-care so both parents can work. They *pay* them to do it! And they pay them Tax Credits to add to their wages.
So why can't they pay for people to stay and care for their disabled folk? The ***essment system is loaded against us anyway. There is every chance that Roz's application for more help will be turned down -
because she lives with her Mum. Our council say that Direct Payments can only be used for personal care. That means getting up, washing, dressing, going to bed & meals. Doesn't include going out, shopping, swimming, riding, interacting with the community, learning new skills, maintaining physio so that abilities don't deteriorate - and so on.
That, they say, is the job of the Independent Living Fund. But you can't get ILF until you get DP's of over ??200.00 per week - and they are very reluctant to give that amount of funding to someone who lives at home. We're having to do some very creative thinking - and that shouldn't be the case.
The silly thing is that I most willingly do what they term 'personal care' - I can do that and work as well. But I can't do everything. I have said in a previous post that it is unhealthy for one person to look after another 24/7. If that applies to hired help who earn a reasonable wage for it, it most ***uredly applies to family who do it for nothing whilst sacrificing their own lives in the process. Nobody minds helping for some of the time, nobody minds doing it for nothing -
provided it doesn't prevent them earning a decent living.
That's when it becomes so manifestly unfair. Having money means having choices. Allowing a disabled person to pay family for care is an empowering thing. At least one doesn't have to feel so damned grateful all the time - and the other doesn't have to be a martyr!
--
Rachel
smicker rossp...@hotmail.com
On Wed, 9 Jul 2003 20:55:08 +0100, Rachel Sullivan snipped It is also manifestly stupid economics. Gov understands economics but fair play doesn't bother them. The economics of the situation are designed (unintentionally) to force people to put their loved ones in care or even to crack up themselves as they try to make the best of this absolutely stupid situation. When my mother-in-law went ga ga we cared for her ( we didn't claim any financial help) but eventually her doctor told my wife that if she didn't have her put into a care unit she would be in one herself as well as her mother. I also got a roasting for allowing my wife to look after her mother.
smicker
"Islander" Daveislander1...@hotmail.com
A fantastically moving, poignant and educational post Rachel. I had no idea of the realities of folk in your situation. My wife does everything for me and receives the grand total of ??25 per week as my carer for 24 hr, 7 day a week 'maintenance' (as she calls it).. As with all carers the expectations are that a family member will do it.. because they are family, and no thought is given to the intricate details that you describe. There will be many others in a similar boat to you and I wish there were answers, but as we are talking about money, and taxpayers money (even though many of us ARE taxpayers) I fear that those famous 'deaf ears' in power will ignore, or spin the real problems faced, and choose to tell us what they HAVE done, rather than what they could and should be doing to allow those in need the control over their own lives.
Dave
removespam j...@ntlworld.com
On Wed, 9 Jul 2003 20:55:08 +0100, Rachel Sullivan I agree it is of paramount importance that those that require help receive it, safeguards need to be in place to ensure this, that in my opinion is the reason the trust deed is written the way it is You have a choice plenty of people choose S/S to arrange care for either their children or parent and carry on with their career.
It could also place the disabled person in a very vulnerable positions. Think about it.
If one feels grateful and the other a martyr something is seriously wrong. I and my family have a great deal of involvement with both parents and disabled adults and I have never heard them refer to themselves as grateful or martyrs.
Do you really find it acceptable for a child that will live possibly half or two thirds of their live after the death of the parent, being at risk from a unscrupulous relative. I could not accept that nor do I believe you could.
The problem as you rightly say is the inability for the disabled person to employ qualified staff. This is where Mencap, RNIB ect ect having a great deal of organizational skills, training facilities and such like should be given the remit. They could do far more and I am sure they would if their charititable status was removed.
Unfortunately the present government much prefer the market to stay fragmented. I believe this will change.
j .
removespam j...@ntlworld.com
Search the net for, "care in the community" and learn something about what you are talking about. The more nonsense you spout about this subject the more convinced I am you are not really interested and just looking for self gratification.
j
removespam j...@ntlworld.com
On Wed, 9 Jul 2003 21:27:22 +0000 (UTC), "Islander" The facts are Dave a great deal as and is being done to allow disabled people to be able to control there own lives within the comunity...Parents are also part of the problem by being to protective. It really is a very complicated subject.
j
smicker rossp...@hotmail.com
On Wed, 9 Jul 2003 21:27:22 +0000 (UTC), "Islander" That is quite right Dave and that is why I want my MP to find out about it and also why I want the local paper to also find out about reality. It's like banging your head against a wall though I admit :-) smicker
Pat Winstanley ng_w...@yahoo.co.uk
I suppose one way to solve the problem might be to have an ***essment made of how many (wo)man-hours a week the person needs care/attendance (someone might need another person around all the time but not actually 'doing for them' all the time).
Then multiply that number of hours by the minimum wage to get a minimum amount of care money for that person. That amount to be an automatic sum that the disabled person would receive regardless of any other factors.
Perhaps as a replacement or partial replacement for the care element of DLA? What costs are the care elemnts of DLA supposed to cover or partially cover now? Actual caring only (time/work) or also things like the cost of adapted equipment etc.
Then the sum involved could then be paid by the person to any carers (whether relative, live-in or not) they wish, but no individual carer to receive more than 40 hrs worth per week on average. PAYE records would be sufficient to do an audit in the case of problems/queries about who gets what. Presumably there already needs to be some sort of records kept as to who is paid what from the allocated sum for paying carers.
This would help prevent burnout by a relative or other carer and allow the time to be split between different people according to any other commitments the carers might have (such as outside work, leisure activities etc). At the same time it would defelect any criticism or accusations of the relative-carer profiting off the back of the disabled person. The maximum they could earn from the caring work would be about ??180 per week, and it might be a good deal less than that if they have less than 40 hours of the total care allocated to them.
Since outside carers might well be unobtaianable at the minimum wage rate perhaps just the first 40 (wo)man-hours of the total care to be costed at minimum rates with the rest at a more 'industry standard' rate. There could be a stipulation that anyone who currently wouldn't qualify to be paid as a carer because of kinship/residence could only earn at the min rate from the care money, but others could be paid more.
Dunno... would it be workable, helpful?
Thoughts anyone?
Serena Blanchflower nos...@sblanchflower.freeserve.co.uk
On Wed, 9 Jul 2003 20:55:08 +0100, Rachel Sullivan That surprises me. I don't know how much flexibility different councils have in how they implement DPs or what restrictions apply but that certainly isn't how my local council (Hampshire) interprets it. I'm in the process of changing over to DPs and have got a package agreed to cover cooking and shopping - no personal care.
--
Cheers, Serena Sometimes I sits and thinks ... and sometimes I just sits. (Punch cartoon)
"Derek Hornby" derek.hornby...@btopenworld.com
That's a choice you both made. you could have cosedn help form social services, and then, your wife could have chosen to go out to work. Lets be clear now, nothing wrong with a disabled person being cared for by a family member, but it's still a choice.
> and receives the grand total of ??25 per week as my carer for 24 hr, 7 day a plus DLA care, plus housing costs, plus income support.
You're incorrect, family are not expected to do all the care work, If this was really true, social services would refuse help to anyone that lives with family, but they do not refuse help.
Far better you explain what should be on offer.
You don't seem to be aware that help *now* is available.
Clue, ask social services for an ***essment of needs.
Find out about direct payments for paying for your care needs.
Direct payments, are not refused on grounds one is living with family.
So, by employing your ownb pa, or team of ***istances, you're taking more control of your life, and, your wife is able to go out to work, if she wants to. At end of day there is a choice.
My mum was offered a home help, but she said: "thank you, but no thanks, as husband is happy to ***ist" Derek
"Derek Hornby" derek.hornby...@btopenworld.com
If one decides to keep a child at home, and educate the child personally, one won't be paid by the state to do that work, because it's a choice the person has made. Just same sort of thinking about care help.
> If it hadn't been for my Mum, working hard at age 73 to keep the family I do understand your point, but what about the help from s/s isn't the real problem about finding the right type of person to be a pa.
Derek
Rachel Sullivan rac...@thbarker.demon.co.uk
Not always possible - as I pointed out. We'll see how it pans out for Roz, but we've been working on it for 2 months now ... another meeting with social worker next week. So far I've been given 3 hours a week ...
it's nice, but it doesn't allow me to work!
I have. And I think that employing strangers can also place them in a vulnerable position. Yes, of course there is something seriously wrong. If the disabled person sees the family member worried sick about money and tired out because they are caring 24/7, I don't imagine it makes them feel great.
If they could help out financially that would be different. At least the money worries would be alleviated. I know that Roz absolutely loathes having to ask for everything (however much we re***ure her) and that the dignity of being able to pay for help would make a big difference to her. Betcha lots of other disabled peeps feel the same!
Likewise, a family member who feels forced into giving up their job -
and all that that implies - to care for someone, may well carry a degree of resentment. There was an interesting programme last month (I'm sure I've mentioned this before) on care for the elderly. One woman, in her late 50's, had to give up the job she loved to care for her mother, increasingly frail & with dementia. She stopped work because she felt it was the right thing to do. However, she had no help until she totally reached the end of her tether and told her doctor to 'get that woman out of my house, I can't bear this any longer'. Only then did Social Services step in with one days respite per week. She didn't feel that the woman she cared for was her mother at all, so greatly had the illness changed her, but the loss of her job, salary, social life and the terrible stress of caring without support had eroded all affection. Her Mum didn't feel grateful
- the illness saw to that, but the daughter, understandably, was terribly resentful. Perhaps martyred is the wrong word - she did her best with a cheerful countenance, but inside the feelings were very different indeed.
Another elderly lady whose memory was failing had a family who decided not to give up work but to employ carers. Her house was full of antiques - little valuable ornaments & paintings. They gradually disappeared - the family reckoned about 80K had been 'given away' or stolen over a 3 year period and a constantly changing trail of people in and out of the house. They couldn't do much about it. That lady is in a home now.
I don't think that total caring from a relative that is older than you is a good idea in the first place. (Or indeed total caring from a relative/employee full stop!) I would feel a lot happier about the situation if the carers that are needed were available (thin on the ground around here), reliable, trustworthy and could then supplement the caring from family (or vice versa). What makes you think that an employee would be more honest, decent & less likely to abuse than a relative?
Of course it is possible that the system could be abused by an unscrupulous relative - but it's equally likely, possibly more so, that it would be abused by an unscrupulous employee. I do know that if the person we employed had been looking after Roz without me checking on her, Roz would have been desperately miserable, unable to challenge the situation and would, very likely, not have been able to tell a social worker or anyone else in authority. Are there checks? Or do vulnerable people with no family just get dumped in homes & forgotten about?
There must be a more reasonable compromise somewhere. Something that isn't all or nothing. You either have strangers caring for you so your family can work - or you give up work and do without all the benefits that being employed brings (not just financial). There will always be a small proportion of people, family & otherwise, who abuse the system, but generally speaking, families are pretty good things & should not be put under intolerable strain so the government can save money.
When a care package is put together by social services, it's costed out at about 10.50 per hour. The carer gets about half that, the rest going on admin. Paying family for just *some* of the time would work out cheaper and the desperate shortage of carers would be somewhat alleviated. (Perhaps a better wage for carers might help the situation too).
Certainly hope so - with an ageing population like ours it needs to.
--
Rachel
"Islander" Daveislander1...@hotmail.com
Derek, I don't recall my post actually complaining about my situation, just using my circumstances to state that we (the family) are in a similar situation, though not in such a 'predicament'. I am quite aware of the other 'benefits' we have thanks, though why you feel the need to post the list is beyond me.
My wife receives her ??25 per week as my carer was my point.
Dave
smicker rossp...@hotmail.com
On Thu, 10 Jul 2003 00:14:23 +0100, Rachel Sullivan snipped Rachel, your post was very informative and I can tell you now this thread is being watched by people who only lurk at the moment and your posts are by far the most informative and I am sure they are starting to make folks take notice.
smicker
smicker rossp...@hotmail.com
On Thu, 10 Jul 2003 06:35:49 +0100, Pat Winstanley Wouldn't it also be a good move if the Government stopped using charities, trust funds etc and accepted full responsibility for this?
I don't know, I am only asking.
smicker
"Peter V Rawlings" peter_v.rawli...@ntlworld.com
Ah! But I think the <electorate> will avoid 'listening' - with their cross-shaped 'veto', in the customary periodic way. :-( Aren't the majority happy to pay lowest direct taxation and then deign to give of their <surplus> funds <voluntarily> according to their <disposition>? You know, loose change into a can on a busy Saturday.
I really believe the person-in-the-street consoles their limited conscience with the belief that street collections fill the need in many calls for support of the needy. I know I did, before I started my remaining experience! I don't know figures, but I guess it's rare for covenanted donations over a long period to be engaged upon. There were tax incentives to commit to long-term contracts of this type. But then, the Government of the day would have made it attractive - to attract funds that it would then not feel obliged to raise!
No; raising taxes to support the 'great un-earning' - it must be an election loser. No-one wants to 'feel' <that> 'good'!
Cheers, Pete.
"Derek Hornby" derek.hornby...@btopenworld.com
by choice as Jim has pointed out, there is help from s/s Because you posted in such a way as to imply it wasn't much money wife gets, I was simply reminding you of 2 things: 1. other benefits such as DLA, housing, and income support.
2. Social services help.
But, other help is on top of that, so it's not a case of just ??25 in your other post you clearly did say: "As with all carers the expectations are that a family member will do it..
because they are family, and no thought is given to the intricate details that you describe." Why did you say that, given there is no evidence to back that view.
family are not expected to do all the care work, If this was really true, social services would refuse help to anyone that lives with family, but they do not refuse help.
There are many people just reading the news group, and it's most important that those that seek support, and help, are getting accurate information.
Derek
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