This post is about a friend of mine who has agreed, up to a point, to let me write about her situation.
Angela suffers from a number of conditions, including peroneal muscular atrophy, high blood pressure, anxiety, depression and other complicated medical problems relating to a road traffic accident she was the victim of some years ago.
Due to some personal tragedies in her life, Angela now lives alone in an adapted two-bedroom bungalow which she rents. Angela loves being able to see and chat with friends, reading, listening to U2, and also enjoys watching soaps and ‘Countdown’ on TV.
Until 2009, Angela was able to work. However, her condition worsened and she is now unable to work at all. She pays for a carer via benefits to come and help on certain days with some of her basic care needs, including washing, laundry, hoovering, dusting, tidying and some aspects of shopping.
Since then, Angela has had no other choice but to exist on benefits and receives Income Support, Housing Benefit and Disability Living Allowance (DLA).
Her Housing Benefit, when it was based on the 50th percentile, was paying for most of her rent – yet she still had to find just over £50 per month to top up her Housing Benefit in order to pay the rent in full.
Her home is not huge and (as Angela would be the first to say herself) not what one would call luxurious. In the past, she had to use money from DLA to top up the rent.
This is not unusual, as most people on Housing Benefit have to top up to meet their rent, as Housing Benefit rarely covers the entire rent, as it was based on the 50th percentile.
Angela’s home has been adapted – and Angela paid for this herself when she could work. She uses her 2nd bedroom to store various equipment, including a commode, hoist, a specialized wheelchair, other medical equipment and a special bed. There is nowhere else of this to go or be stored.
However, Angela’s life and way of life is now at risk. The recent Housing Benefit cuts (not caps), and changes to the Local Housing Allowance (LHA) to the 30th percentile from the 50th, mean that her Housing Benefit is much lower.
That now means that, on top of the £50 she had to find before, she also now has to find an extra £35 per week.
This is also because the amount of Housing Benefit is now partly determined by the number of rooms and people in a property. The reforms have no exemptions for disabled people, who often need an extra room (this is also often the case for families with a disabled child who cannot share a bedroom).
Angela simply does not have this extra money or any means to earn it.
After a number of discussions with her local council, consultant and doctor, it seems she has few options.
As she simply cannot make up this huge financially gulf that the Government has inflicted on her via the welfare reforms, she can either move or look at some form of care.
Angela approached the council about this last year (2011). Unfortunately, the council have no suitable homes for Angela and there is no social housing or housing association properties anywhere nearby. In addition, any new home would need adaptations prior to her moving in (in Angela’s case, the adaptations cost around £30,000).
Angela is reliant upon local neighbours and friends for essential day-to-day help and social interaction. They provide this help for free and gladly. These are also her friends, the people she mixes with, shares her time with, socializes with and the people she cares about.
If Angela is forced to move, she will be ripped away from her community and the place she loves so much. She will lose contact with her friends and lose her support network. In effect, and in her own words, she will lose what independence she has left.
This cannot, and should not, be tolerated by any of us.
Although people receiving DLA may be exempt from the benefits cap, they are NOT exempt from the Housing Benefit cuts and the Local Housing Allowance now being based on the 30th percentile, rather than the 50th percentile. They are also not exempt from the new rules on bedrooms and people living in a property.
I find this wholly wrong and very unsavory. Angela, and people in similar situations, should not have to cope or deal with this on top of their problems.
Angela also does not have the money to move or relocate. She also has no money for adaptations, some of which are specialist and expensive.
Who is supposed to pay for such a move?
Who would pay for the adaptations?
Many people have to turn to the private rental market – but that costs a lot more money due to extortionate rent prices – and where would a deposit or bond come from?
Like so many disabled people who cannot work, Angela no longer has access to credit cards, overdrafts or loans; her income is fixed.
As Angela said to me, “I couldn’t afford credit if I could get it. At the end of each month, all the money I get is spoken for – it’s all gone on bills. People don’t realize how much more expensive life can be with a disability. They don’t have these bills. It’s the same with all the bills. I’m on the cheapest tariff with my gas and electricity company but I’m still £40 short every month. I’ve no idea what to do about that debt because it’s an ongoing problem. People don’t realize, I HAVE to use equipment and the cold affects me badly – I have to keep warm to avoid getting very ill. I only use the TV and household things, it’s the heating that ramps it up and the fact I’m at home most of the time. I never used this much when I could work because I was not at home anywhere near as much. I don’t think people understand how much more I have to use just because I now have to be at home most of the time. If I had a choice, I’d love to use less, I don’t have a choice, though.”
At the time of writing this, Angela’s only real option is a care home. It is outrageous – nobody like Angela should be faced with no choice or the prospect of having their independence taken away due to welfare reforms. The safety net of welfare should be there to serve and protect Angela and others like her.
It’s with perverse irony – with having a tory-lead coalition Government – that Angela is left with no choice.
‘Choice’ was something the Conservative Party ranted about for decades; yet here they are, taking choice away from the most vulnerable and those with the fewest options in the first place.
In her day, Margaret Thatcher offered a theological justification for her ideas on capitalism and the market economy. She claimed, “Christianity is about spiritual redemption, not social reform.” She even quoted St Paul by saying, “If a man will not work he shall not eat”.
Hmmnn. But what if a man (or woman) can’t work?
This is central to the concerns many disabled and vulnerable people have. I include children in that too.
Nobody is saying that we should do nothing about the people who won’t work.
However, it’s all to easy to say ‘get a job’, when we know few jobs are out there. We have rising unemployment, a high level of graduate unemployment and businesses unwilling or unable to invest in jobs due to the economic situation and poor growth. Since being in power, the government has done little to really help improve the economic landscape (employers and employees say the cost of living must come down).
I do not think the government has done enough research or analysis. It seems to me that without establishing the requirements sufficiently, it would be foolish and very risky to devise policies and select models for benefits and any assessments.
For example, government data on Housing Benefit has missed some vital points. Only 1 in 8 are not working, only a small proportion of private landlords take Housing Benefit tenants, and few people get Housing Benefit that pays all of their rent.
We know that when Housing Benefit was based on the 50th percentile, there were not enough properties available for people and families at that level. We know this because most people still had to top up their Housing Benefit (from other income or benefits) in order to pay their rent in full.
This was wrong in itself for disabled people – after all, disabled people need DLA to pay for the increased and often high care and mobility expenditure when living with disabilities. To then have to take some of that money just to make up the rent cannot be right.
Yet now, with no exemptions from the Housing Benefit / Local Housing Allowance cuts for DLA claimants, that financial burden is so much higher for the most vulnerable. This hits disabled people disproportionately.
There is no question that welfare reform and modernisation is needed.
Neither I nor anybody I have come across argues with that.
However, these reforms, I feel, are outmoded and do not cater for a wide variety of situations. For that reason, on PiP/DLA, many more assessments will be necessary, which is a very costly process. It may also see the number of applicants rise – especially with increasing media coverage that could yet follow.
There are many disabilities and conditions where “care and mobility needs” have different relationships with the actual “medical condition”.
Sometimes there is a direct relationship and it is obvious. In other situations, though, it may be quite different; it may be indirect, consequential, fluctuating, immeasurable or “hidden”.
What this means is that a person might have a NEED due to disability because of a condition (as opposed to their typical everyday “care and mobility needs”) that is not obvious, detectable, always present or predictable.
This need could be far greater than they would have typically, but is a need that does repeat and also produces further, consequential needs. And with such needs come high costs.
For example, Angela has “flare-ups”. These occur entirely at random but only a few times each year. However, when they do occur, Angela has to use a hoist, special chair, commode, other equipment, and adaptations in her vehicle. In addition, her mobility is greatly impeded and some of her medical conditions worsen. She also becomes susceptible to other medical problems. These “flare-ups” can last a few hours, a few days or a few weeks. They are completely unpredictable.
During these times, her life is completely altered and her needs far greater. But these are totally unpredictable. This is due to her combined medical conditions – it’s not part of her regular care and mobility needs but it is still something she needs vital help with – all of which costs money. This is why Angela’s DLA is so vital to her.
Considering this therefore, assessing people via a model on just (or predominantly) care and mobility needs will inevitably mean genuine, deserving people will be excluded.
In the new Personal Independence Payment(PiP) system, there is talk in the PiP consultation document about whether one is affected for 50% of the time within a 12 month period.
However, as in Angela’s case, sudden changes and “flare-ups” can occur which mean that, although a person might only need the expensive equipment and care for 10% or 20% of the time in a 12 month period, the fact is that the time percentage has no bearing on the need or cost. In these scenarios, the person still needs the expensive equipment or extra or intensive assistance.
These are not problems or episodes that anyone can predict. This is also the same for people who suffer from disabilities or conditions where the severity fluctuates at random times between extremes.
There are a lots of disabled people like this and the Government MUST listen to disabled people and organisations.
I really cannot see how the above proposed criteria (or the overall model) will be workable. I do not think the Government has done enough research into medical conditions, disabilities, care needs, mobility needs, care costs and mobility costs.
The Government claims to be working with disabled people on welfare reforms. Yet so many disabled people, charities and organisations across the UK say that is not the case, and the evidence and data point in favour of the latter.
In recent times, disabled people have been made to feel demonized and persecuted by both the Government and the media. This has not helped at all with the reform process, has caused deep offense and anxiety amongst disabled people, and has risked setting attitudes towards disabled people back by decades.
Angela said to me that, as a person with disabilities, she has felt ostracized from other people and society by comments made in TV programmes and from what she’s read in newspapers.
These stories have been unnecessary, unpleasant and factually wrong. They rely on people blindly believing them, rather than checking the facts out for themselves and giving the matter due consideration.
The Government has not done enough to involve disabled people and have ignored evidence and data. As such, sadly, the attitude toward disabled people has been skewed by misinformation and misrepresentation. The picture the Government and politicians have shown does not reflect the reality or the modern world.
There are many issues that disabled people and children often face in trying to just live as normally as the next man or woman.
However, legislation cannot do the single most important thing that needs to be achieved in order to reduce the discrimination and persecution of disabled people, the elderly and vulnerable groups.
Legislation cannot alter peoples’ attitudes or their misconceptions about disability, religion, race and culture or indeed sex (in terms of sexual discrimination – which is still as much of a problem in some areas as it always has been).
That is the real challenge. That will take longer.
Welfare reform is needed but this Welfare Reform Bill in its current form is outmoded and a big step backwards.