In celebration of the closure of the Independent Living Fund

Abstract

Over the last months we have heard calls to save the Independent Living Fund (ILF). Social media and Internet forums were flooded with emotional pleas to the government beyond its final days: parent carers and vocal disabled people calling for action to prevent themselves or loved ones being ‘imprisoned’ in their home, unable to use the toilet or having a life not worth living. ‘I will have no control, no choice and be unable to live in the community’, one person chanted. Others chanted ‘which side are you on’ (Channel 4 News). I found myself in a very unusual situation. Here I was, a campaigner for independent living all my adult life, a former Direct Payment Support Service Manager, social work lecturer and ILF recipient. Surely I would be devastated that the ILF had ended? My experience was entirely different, I celebrated.

Keywords:

• independent living
• interdependence
• personalisation
• funding
• personal budget

Introduction

My relief was shared with many other silently joyful people. Silent because to speak out for the closure of the Independent Living Fund (ILF) was met with such vilification that for the first time I felt shame rather than disability pride. I saw mentally positive people who I had known for years be worn down to tears, frightened and upset by scaremongering comments that they would be as good as dead once it ended (Disabled People Against Cuts 2015). This was not the movement I was part of 25 years ago. When the ILF needed some ‘modification’ to its policies, such as ‘earning disregards’, disabled people supported and listened to each other with clear aims. We would raise each other’s spirit and campaign with conviction and truth. It did not feel harmful or abusive like this campaign has felt. It is hard to take issues seriously when you have campaigners saying they will be prisoners in their homes from July onwards at the same time as confirming they had actually had their assessment and would continue to receive the equivalent funds after the closure (I assume via a direct payment or Personal Health Budget) (Pring 2015).

This campaign gathered momentum, showing more signs of doing emotional harm than good. How can this be beneficial for the physical and mental health of people? The tide of emotion and crying in other’s arms reached a crescendo and a wreath was laid on the last day (Disabled People Against Cuts 2015). Even my personal assistants were noticing how ‘over the top’ it had all become. When the ILF began in 1988 it was the only way for people to take control of their support through funding going directly to them. Before 1993, needs ranged from low to critical, so once the ILF closed, people with low or even moderate needs were unlikely to be eligible to transfer to local authority funding – a point that was not really shared during the anti-closure campaigns or in the media (Department for Work and Pensions 2012). Because so many people applied to the original fund, a new fund was set up in 1993 focusing on people with substantial or critical needs. I began using the ILF in 1993. It was part of a four-way funded care package comprising ILF money, social services cash payments, Disability Living Allowance and my Disabled Student Allowance. I employed three or four assistants for 24-hour ‘care’ and this combination got me through my first degree as a ‘severely disabled student’.

When it became lawful for local authorities to offer (and later a duty to make) cash payments in the form of direct payments, this would have been a good time to begin closing down the ILF. As local authorities moved to only meeting people with higher care needs, so the ILF also increased its own separate eligibility criteria – eventually closing to new applicants. Essentially a two-tier system developed where around 94% of people were using both ILF and direct payments to fund personal assistance (Department for Work and Pensions 2012). Other people who had high support needs, but were aged under 16 or over 65, had to rely on limited funding from the local authority only, due to age criteria imposed by the Fund. How was this equality of social care? Who was speaking out for older people? I saw a parent on Mum’s Net talking about how her young child would never have independence if the Fund closed and I cannot but wonder whether they knew about the eligibility criteria for ILF and how direct payments alone could arguably be a better option?

Eventually capacity was not a limitation within direct payment legislation and people with profound and multiple learning difficulties could personalise their support if someone was willing to organise assistance on their behalf – initially one of the stumbling blocks to accessing direct payments for around two-thirds of ILF users. With direct payments being somewhat more relaxed in law and in practice today (and with recent health and social care legislation which affords portability and different ways to assess the level of need), I feel there has been some real change within social care. A change for the better. The ILF has earned its place in disability history, but we need to move on to a more unified approach to both health and social care – and there is a lot of work still to do without the ILF holding things back.

The nightmare that was the ILF

Being an ILF user meant two different sets of rules as to what I could spend my money on, two assessments, two yearly reviews, two lots of payments and forfeiting half of my Disability Living Allowance care component to go towards my support. I can now use my Disability Living Allowance to pay for assistance and disability-related costs that fall outside of my support funds, meaning I am financially better off.

Barrier to work

For a while the ILF held me back – if I worked they would take all my earnings above Income Support level as being able to go towards paying for my assistance. Essentially I could not work because of this rule until, after much lobbying, earnings were disregarded. I then had the hellish process of persuading them to combine funds with Access to Work – with three funders arguing about who was going to pay for what aspect of my day.

Barrier to married life

The ILF held me back from getting married. The local authority only took my savings into account when deciding whether they would fund me. The ILF would have taken my husband’s earnings as being available to pay for my support, and included his savings in seeing whether I was entitled to ILF funds. How was I going to break that good news to a potential spouse back in 2000?

Assessment trauma

Every assessment from the ILF would be very detailed – about four hours long – and leave me exhausted and in tears. Four hours detailing everything I could not do to plead for an award of the same amount or greater for the next financial year. I found it far more stressful because of the level of detail they required beyond what the local authority needed. They would sometimes send in two ILF assessors (who used to call themselves social workers until they got a slap on the wrist for assuming the title without the registration) because I was a difficult/complicated user. In reality this was probably more that I was an informed user who knew my way around social care, ILF assessments and the law. I would not miss the lengthy appeals and complaints when the ILF cut their funds for no apparent reason during critical years – which took months of writing and document sending to get the funds back to the original amount. Complaining to the council about cuts to funding was always easier and less time consuming because of a better complaints procedure.

No more rules like ‘we give extra funding for out of pocket PA [Personal Assistant] expenses … but only if you know about it and specifically ask’. No more endless arguments between the ILF and the council about exactly which hours they would fund. Would the council fund the first toilet visit on a Tuesday or the ILF? That is how petty it would be. The ILF kept a chart of each hour on each day to see which ones they would fund or part fund. It was degrading and pointless from a user perspective because, at the end of all of this, they both put the money in my account and I just got on with paying my assistants from the overall total.

The real problem

I argue that the heart of the problems with the closure was not the closure itself, but the way it was carried out. I totally agree that a unified system makes more sense and the ILF was past its use-by date. I do not think the answer is in setting up a new separate Fund as Scotland and Northern Ireland have chosen – but time will tell (Independent Living Fund Scotland 2015). There are many paths to freedom, choice and control. It is perhaps worthwhile taking time to consider that it is not where the money comes from that makes disabled people ‘Independent’. Rather, people make themselves independent by asserting their entitlement to funding from whatever source, meeting eligibility criteria and using it according to what ‘independence’ means to them (Watch 2013). I do not believe in independent living – more interdependent living: living, working, socialising, co-depending, co-existing with each other – not in our own little disability community bubble, but in society as a whole. Campaigns which only look at improving social care provision for a minority of the community (e.g. ILF users) are failing the majority of people who need a voice for better social care. It is selfish and exclusive.

To be fully immersed in society for mutually inclusive benefits, we need to get to the roots of the problem. Social care is tremendously underfunded, the quality of assessment for eligibility is still terribly poor and variable across the United Kingdom, and disabled people are still poorly informed and inadequately supported in their life goals and understanding their rights. This is what the campaign should have been about – the overall quality of social care and human rights as it applies to everyone – not just the select few ILF users. This would have been a fantastic opportunity for challenging the lack of investment in welfare and cuts for millions of existing and future social care users across the United Kingdom. Sadly the disability movement sprang into action where the whole focus was on a small percentage of social care users who were potentially going to be affected by the ILF or particular benefit cuts/taxation programmes. I find this shameful.

The handover was never going to be pretty and I do not disagree that the changeover to local authority funding has been shambolic. With over a year to plan, it appears that most councils left it until the last weeks. My own assessment only came together in the last week after an exhausting re-assessment starting again from scratch. It left me tearful and mentally exhausted for the week that followed. I too had the worry about how much I would be funded (ILF User Guide 2015). Would my PAs have to take a pay-cut or would my husband be seen as someone who could provide even more support than the current 14 hours each weekday and 24 hours at the weekends? I had a positive outcome and was fully funded.

There is no excuse for the lack of preparation – apart from, in fairness, councils were not clear about the amount of funding or when it would come through. The question of whether it should have all been ring-fenced is a good one and some people are understandably worried. People with critical needs are saying they have been left without support and told to wear incontinence pads because of the cost of practical toilet assistance (Inclusion London 2015). Ventilator users are being left alone for hours. What would be wrong would be to blame ILF closures. We need to be clear that this is down to a local authority’s inability to carry out assessments and lawfully provide appropriate support. It demonstrates a lack of understanding of duties under Equality and Human Rights law. It demonstrates a return to budget-led assessment and social care provision that has buckled under the strain of minimal investment.

Disclosure statement

No potential conflict of interest was reported by the author.