Fighting for our independence

Since the Coalition Government came to power, it has become increasingly clear that through a combination of austerity policies and ideological cuts (or ‘reforms’) the independence which disabled people have fought for over several decades is under real threat. These threats include, but are not limited to: the replacement of DLA by the ironically-named Personal Independence Payment, the scrapping of the Severe Disability Premium under Universal Credit, the closure of the Independent Living Fund and the pressures on local authority adult social care services which are increasingly under-funded and over-stretched. These latter two threats go hand in hand, and both are in the news today.

During the week in which ILF users start receiving letters to tell them the fund is closing and they will have to make do with support from their local authority, a judicial review of the consultation preceding the closure of the Fund is today being heard in the High Court; this will be accompanied by a vigil outside the Royal Courts of Justice organised by DPAC and Inclusion London.

This afternoon, I will be giving oral evidence to an inquiry into adult social care for working age disabled people, the ILF and independent living, which is being undertaken jointly by the All Party Parliamentary Disability Group and the All Party Parliamentary Local Government Group. I plan to explain my view that adult social care services should in reality be independent living support, based on the social model of disability and, as far as possible, should provide disabled people with equality of opportunity with their non-disabled peers. This is especially important for working age disabled adults, to enable full participation in society on an equal basis – contributing and being included – socially, in paid work and in personal and family relationships.

I believe eligibility criteria should be set nationally and that funding should follow the disabled person, so if they move to another local authority area, perhaps for work or to be close to family or friends, they can be assured of the same level of support. I also believe that working age adults should not have to pay charges for their support, since they have the same aspirations as non-disabled people – for example, to save for the deposit on a flat or for an additional pension, to provide a better quality of life when they’re no longer able to work, or to support their families. However, while charging remains, I believe charging policies should be set nationally and that such policies should leave disabled people with a great deal more income and capital than is currently the case, after they’ve paid the charge or contribution.

If the ILF does close, we must not lose its strong ethos of empowering and independence. ILF funding, which supplements local authority social care support and enables the employment of personal assistants of the client’s choice, supports disabled people to live life to the full – working (and paying taxes), participating in society and playing an equal role in family life. For this ethos to live on, social care services must expand their horizons and aim higher than just meeting basic needs. This will need commitment from the Government, since the Association of Directors of Adult Social Services (ADASS) and the Local Government Association (LGA) made it clear in their response to the consultation that they do not anticipate being able to replace the loss of ILF funding with equivalent Disabled man playing bocciasupport locally.

Without greater aspiration on the part of local authorities and increased resources, the closure of the ILF will almost certainly prevent those with the highest support needs from participating in the way they have been able to until now. For disabled people who have ‘done the right thing’, making the most of their abilities, being economically productive and playing their part in society, this will be a cruel blow.

The big question for me is, even in these difficult times, can the Coalition rise to this vital challenge, or will the life chances of disabled people be destroyed for a generation?

12 thoughts on “Fighting for our independence

  1. Reblogged this on sat n' all that and commented:
    Jane explains what’s at stake much better than I can. I started allowing care to be put in too lste to apply to the ILF but perhaps I would have agreed more readily had I been given a taste of the kind of independence people with ILF have had. To hsve had it, and no for it to be snatched away is Indeed cruel. Independence is expensive so no one wants to vouch for it, all they see is pound signs. Many will be reduced to the kind of kife I often have. Bored because energy or support or money is not there to di what they want to do. Please pray about ilf if you pray, and fight with us before it’s too late.

  2. Many thanks for this post Jane. I do appreciate you sending me a copy & I very much and totally concur. I have just written a new report for the Centre of Welfare Reform. I’m thinking that perhaps I should send a copy to the All Party Parliamentary Disability Group as, to date, very few MPs appear to know about Unum’s involvement with the WCA. This I believe will link to PIP assessments, although as yet I have not conducted the research, but would be amazed if something similar is not also found behind the PIP future assessments etc etc. DLA will soon disappear and, following the planned PIP ‘assessment’, this will impact -vely on social care as the county authorities use the highest rate of DLA for care as a benchmark for providing personal carers in the home. Therefore, given that many of us risk losing our carers if refused PIP, I think this may well be the biggest threat to the more profoundly disabled people? Is my thinking correct on this? Good luck this afternoon. Perhaps you could consider permitting me to ring you one day as I would value a chat if at all possible please? Take care. Mo Mo Stewart Disability researcher Disabled veteran (WRAF) Retired healthcare professional *** The contents of this email are intended for the recipient only and may be confidential. Permission is not given for this information to be published, forwarded or distributed further. ***


    • I could be wrong and I hope I will not be proved to be, but I believe that the majority of cohort of disabled people you are thinking of are very unlikely to lose their high rate care DLA when transferred to PIP.
      There are a great many issues with PIP, but imo getting high rate for people with high personal care needs is not one of them, in fact quite the reverse. At the moment disabled people can only get high rate if they need help at night, regardless of the amount of care they need during the day. I consider this to be a terrible anomaly and has badly disadvantaged some disabled people with very high care needs. This will be corrected under PIP and is the best thing about it. In fact maybe it is the only good thing about it!

      Where PIP falls down badly is catering for disabled people with physical mobility issues who are not full time wheelchair users, disabled people with significant support needs in only one aspect of their lives, disabled people with support needs in many small ways which add up to a big support requirement, disabled people with supervision needs, and others I probably forget.

      It is probable that some of the above got high rate DLA though. If they did and lose it there are two scenarios:
      1) If they were employing carers themselves, they will lose their care, leading to significant life quality and health issues.
      2) If they were receiving care from social services, this *should* continue as they were assessed as needing it. This does not change simply because benefit criteria have. Once assessed as needing care I believe social services are obliged to meet that need.

      However if the disabled person was also on ESA or IB, social services would have been taking the equivalent of Mid Rate Care DLA as a contribution towards their care under something ironically called “fairer charging”. (Ironic because personally when earning a good wage I didn’t have to pay, but on benefits I do!)
      Therefore Social Services will be out of pocket by MRC per disabled person receiving care who loses their DLA. This is at a time when social services are struggling to meet their care obligations as it is.

      Yet despite all this the government has said there will be no knock on effect on local services. Having personally read the group responses to the original DLA consultation, some of which were from local councils, I can vouch that this was a big worry, expressed many times. This has simply been ignored.

      • I disagree re DLA/PIP – I have highest rate care DLA but most of the help I need does not fall into the neat PIP activities and descriptors so I’m unlikely to qualify for enhanced rate daily living PIP. If I’m not using council services (as now) I need the higher rate to pay for help.

        The rest of your arguments are spot on, as ever! x

      • To We are Spartacus
        As my own help does (luckily) fall very neatly into the PIP activities and descriptors I readily accept I may be overestimating the number of people who will smoothly transfer from high rate care DLA to enhanced PIP.
        What we both agree on is that not everyone will and it remains to be seen what proportion will be successful in practise.
        Having said that, I know we have really bad figures for high rate mobility, so do we have equivalent ones for daily living? It isn’t something I’ve really looked at in detail yet. I had (unfortunately perhaps wrongly) assumed that was one area which was ok and that it was the lower care which was going to be badly affected.

  3. As usual, a very good and well written piece. I was particularly interested in your point that working age adults should not have to pay for care; this struck a chord.
    I have always worked full or part time except when having my 4 children. I have often been an informal carer also. I feel therefore I have put money into the ‘pot’. I became ill a few years ago and unfortunately found myself in the position where I had to claim benefits. After ‘jumping through hoops’ to get the benefit, including the dreaded ATOS assessment; I managed to claim ESA and was placed in the support group. It is contribution based because I have worked, therefore I lose out on the extra ‘benefits’ that income based ESA gives (just because I have worked – is that a fair system?). I then had to go through the exact same uphill battle to claim DLA.
    I quickly found myself bedridden and only able to get out in the wheelchair on a very rare occasion; with each outing causing more repercussions lasting several days to weeks. My children are either working or at school and have their own busy lives so I am on my own from just after 8 until at least 4.30 -5.30 when they quickly change before doing their own thing. I am sure all of you that have family can appreciate how hectic it is in the morning with everyone trying to get ready and out meaning sometimes I can be overlooked.
    I was advised by a nurse to apply for care so that I would have some help while the family were out. I was shocked when I saw the financial assessment used to see if you had to pay towards your care. All the income in the household is counted including any working children; which I refused to give as their income has nothing to do with me. The only reductions made to the total income is for mortgage or rent, council tax and an allowance per couple and/or child aged under 16. This allowance, currently 250 per week per couple is supposed to cover all food, household and personal shopping, gas, electricity, insurances, petrol, telephone, tv licence and any digital packages, car/travel expenses etc and all debt. Once you break this down you will quickly see that it barely covers the basics. There are no allowances for children over 16 even if still at school/college, no allowances again if your child is unemployed/sick and still living at home or if on a low paid apprentice wage like my dauggter is (£2.60 ph). Therefore I am pretty sure most people would be left with a residual balance from which charges for care can be made regardless of any uncovered expenses.
    I stated that I could not afford to pay for care due to other financial commitments etc which means that therefore I do not qualify for care. So, I am left all day every day and some evenings on my own without help. I cannot get up to get my own food, go to the bathroom or take care of myself without assistance.
    I am certainly in a very difficult predicament, if I pay for care I would soon lose my house etc as I would not be able to pay my mortgage and other commitments. On the other hand, if I do not, I have no help whatsoever and no family etc to call upon for assistance and therefore left to fester.
    We are all in it together – I think not.

    • You can get income ESA even if you have worked. It is called “Contributions and income based” ESA. It is then based on your savings and current income. If your savings are below £16,000 and any other household income is below a certain amount, then you are entitled to the income related part as well.
      However this does not help you much as far as care contribution is concerned. Social services will simply take most of it.

      • Thank you Spoonydoc for this info. You have jogged my memory and I apologise for the misinformation. I faintly remember querying this now and being sent another ‘book’ to fill in. I am sure it asked lots of questions about my mortgage and lack of savings lol. I felt too ill to even begin filling in the form and was even more put off by the fact that the advisor I spoke to had said that filling in the form would count as a new application for ESA and I may have to have another assessment and may not be placed in the support group again. I decided to leave well alone.
        Probably another money saving tactic…

  4. The People Vs The Government, DWP and Atos
    We just had this to the inbox.

    I work within the dwp so please don’t use my name as it could cost me my job.
    The dwp are rolling out nationally an initiative to work with 120k families whose lives are blighted by joblessness, single parents, crime and truancy. We have specially trained personnel to work closely with them to break these harmful trends and integrate them into society, improve their lives and make working the preferred options.
    However what has not been released and is being kept hush hush is that these families are to achieve certain targets working with our staff and stakeholders, professional organisations which have been hand picked to get the desired results as expediently as possible. The department is investing a great deal of resources into this project and participants are to be under no illusions that equal investment and commitment are required from them. This will not be an option where families can choose not to be involved in…..if they refuse to participate, their benefits will be stripped under sanctions. If after a period of 26 weeks results are not forthcoming and improvements tangible and sustained all benefits will be withdrawn. The adults will either have to work in any position that can be found and will be paid via fuel food and basic clothing. If the children continue to truant and participate in anti social behaviour those under 13 will be taken into care and those over 13 will be expected to work under the same terms as their parents with tutors twice weekly to ensure a basic level of literacy and numeracy. They will not be living with their parents but in dormitory accommodation. Tenders have been received and a short list drawn up for the lots as with pip. Fore runners are G4S, Deloittes, Veolia, Capita and Serco
    Myself and many other staff are horrified but are powerless to stop this. The govt are saying they will save more on what they cut on the benefits including DLA for the people in these families getting high rates for anger and behavioural problems, housing benefits and benefits for babies and children. Any of the parents having children throughout or once they’ve failed the initiative will be taken into the care of local authorities. The families will be allowed supervised access at contact centres as deemed acceptable by the people overseeing the project and the handlers for the individual families.
    This is all underway and being arranged as we speak. The govt see these families as an absolute blight on society and one way or another are determined to get rid of them in any way they can. Their view is that support and money haven’t helped, ASBO’s are a joke and seen as a badge of honour and children whether in these families or other families on low incomes are a drain on resources and they believe if they stop paying then the children will stop being born and those already here will have to either conform or to be excluded and earn their keep. To get disability allowance for children is going to be nigh on impossible which is why the reforms haven’t targeted them, new plans are underway as the perception is that ALL children need care and parents know this before having them therefore there are only very rare circumstances where additional support is justifiable.

    Thank You

    • This MUST be leaked to the press. It is about time EVERYONE knew what this cruel government is up to.
      If they continue with their path of destruction and manage to abolish the human rights law we will have no way left of stopping them. Though we seem to have very little power already.
      I cannot believe how low this government is trying to go. They obviously want to rid (not so) Great Britain of all disabled, single parents, poor and children not born with a silver spoon in their mouths. I just wish they could realise that all these “blights on society” could happen to anyone.
      The terrifyingly underlying message seems to be that now all babies that are not going to be born ‘perfect’ (though in my eyes every child is just that); unless the parents have enough money to support them throughout their lives they are not going to be allowed to be born? This is appalling and in fact beyond words. How dare they dictate to people how to live their lives and whether they can have, or keep, their own children or not.
      There is only one thing left for it. This government is not going to change their ways or be honest about anything and are taking us back to victorian times. IT IS TIME FOR A VOTE OF NO CONFIDENCE AND A DEMAND FOR AN IMMEDIATE ELECTION. There is a petition already up and running for exactly this. I have signed – will you?

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