As more and more people are finding that they go from hours to minutes of support from their local authorities, as ILF users are threatened with being passed into a local authority system that cannot serve the aims of independent living, and as independent living is becoming more of a mirage every day, despite article 19 of the UN Convention on the Rights of Disabled Persons (UNCRPD) – we look at Angela’s story. Angela contacted DPAC several months ago when it was clear that her local authority were carrying out practices that appeared to be against protocol -legal representation was found. However, this could not stop the real threats to the reduction of Angela’s support or to her right to independent living:
I’m 28 years old – but if they take away my social care it’ll be the end of my life.
I’m disabled but I want to enjoy life the way any other young woman can. I have two volunteer jobs.
Now they’re threatening to take this support away – leaving me isolated at home, forcing me to go to bed at 9.30 every night, not even able to go to the toilet.
I did a degree in psychology and criminal behaviour. It was interesting but nothing like CSI! During one of the seminars, I met a representative from Headway, the spinal brain injury charity and I’ve been volunteering there for the last two and a half years. I won Luton’s Volunteer of the Year Award last year.
I’m constantly looking for paid work. I don’t sit around watching TV, I never have, I don’t believe in that. I would love to get a paid job. I have tried. I’ve been for interviews for customer services and as a support worker. Even though we are supposed to have equal opportunities, people still look at my wheelchair.
I was hit by a car when I was two. I have a spinal brain injury which has affected my left side. I can’t walk because I have no balance, so I use an electric chair.
When I turned 18, Social Services helped me find a place to live and be independent. Social care gave me total freedom to get up, go to bed, go to the toilet and settle into my new home and life. With decent social care I’ve been able to do whatever I want. I can go out and enjoy life the way any other young woman can. I have two volunteer jobs, and I can go shopping and see my friends.
Suddenly, out of the blue recently they’ve tried to cut my care from 20 hours a day down to three. I was shocked, upset and angry. I tried to negotiate with the woman at the Council and was told “life’s not perfect for anyone”. I don’t expect it to be perfect – I want to have a life like any young woman.
I’d have no freedom. I’d have to be in bed at 9.30pm and get up at 7.30am, with no way to go to the toilet in the night either. My carer wouldn’t have time to cook me fresh food (microwaved horsemeat lasagne here I come!).
Imagine living this life for the next 50 years. If I was stuck with that forever, I would give up and lose my passion for living. I would find a way to end my life.
What I’m asking for isn’t unreasonable. I just want flexibility and freedom and a little support. I’m not asking for the world. But I do want dignity and I do want freedom. If I wasn’t in this wheelchair I would have those things, so why shouldn’t I.
What’s worse is it isn’t just me. It isn’t just about reducing how much support people get. They’re taking away all support for some disabled people. Every disabled person who needs support should get it – this is about the basic dignity and freedom to live our lives.
The government has what they call a spending review coming up – it’s when George Osborne decides: How will he spend our money? What do we care about as a country?
Will you sign the petition I’ve started and send George Osborne a message loud and clear that we want adequate support for disabled people to live independently? They spent more than a billion pounds just on the Olympics village where the athletes stayed last year, surely they can put at least that much into social support for us? We only have a few weeks!
Please sign the petition and write to us at firstname.lastname@example.org with your stories. We are also looking for stories from people who were stopped from applying for Independent Living Fund support in 2010 when the Coalition closed it to new applicants.
This is not just about ‘care’ it is about independent living, the right to independent living and support for all. It is about the UK breaking its own signed commitment to the UNCRPD. It is about the impact on real lives like Angela’s. It is fundamentally wrong!
DPAC is continually gathering evidence of the impacts of the cuts, their effects on independent living and quality of life for disabled people and those with long term health issues. Unlike some other organisations we are keen to bring this Government to task through every route we can, including the legal system.
Disabled people feel their lives are under threat and many of them are living in fear.
Data from Family Resources Survey and the National Equalities Panel Research (2010) found that:
· 75% of disabled women and 70% of disabled men are already at the bottom end of Britain ’s income distribution scale living in poverty.
· A tenth of disabled woman have disposable incomes below £31 per week and a tenth of disabled men have incomes below £59 per week including earned income and benefits.
· Already 30% of disabled people live below the poverty line and 1 in 4 families with disabled children cannot afford heating·
– The median level of total wealth for households headed by an employee is £217,500 compared to only £21,100 for households headed by someone who is sick or disabled.
– Under the coalition government’s austerity drive disabled people are set to lose at least £140 per month through direct cuts to disability benefits (initially devised to pay the extra costs of being disabled) alone.
Care and Support funding. Funding from the Independent Living Fund for care and support has now ceased to all new claimants and any additional needs cannot be met by them. From 2015 the ILF will cease to exist cutting £330 million from funding for care and support. For the 20,000 of the most severely disabled people this is a total betrayal by the coalition government and will prevent independent living.
Social Services budgets are under extreme pressure and nearly all Social Services departments have been told to reduce their budgets by 25% which has an obvious knock-on effect to their provision of support and the amount people need to pay towards this. Local authorities all over the country are cutting the amount of care funding available, tightening eligibility criteria, and increasing charges for those who are still eligible for care. In Warwickshire it is anticipated that one-third of people who currently receive free care will no longer be eligible. InBirminghamthe council are trying to remove care from over 4,000 people and move to providing care to those deemed critical only.
In many local authorities charging for care services has rocketed. One woman has told us that although she has had free care for the last 7 years she is now paying over £50 a week for the same level of service. We also know that in Dudley and Warwickshire charges have risen steeply. Are there any other local government services that people have to pay for twice, once through council tax and again through charging policies?
The Coalition are scrapping Disability Living Allowance and replacing it with a new benefit Personal Independence Payments. An arbitrary figure of removing 20% of claimants from entitlement to PIP has been decided regardless of need. Many disabled people use this benefit to help make up the shortfall they have in paying their rent or for care costs.
The mobility component of DLA may no longer be removed from disabled people living in residential care homes who do not pay for their own fees. However many people who live in residential homes still face losing mobility funding due to the abolition of DLA. This will leave many more residents with only £22 a week to pay for clothes, travel costs, outings, and basics such as toothpaste, soap, etc.
Many disabled people use this mobility component to pay for wheelchairs, mobility scooters and travel to meet friends and family. Losing DLA will leave disabled residents effectively trapped in these homes, and denied any right to a family life.
Other Benefits Employment and Support Allowance (ESA) and work capability assessments (WCAs) have been criticised by CAB, disability charities and Disabled People’s Organisations. Even people with terminal cancer have been declared fit for work and removed from Incapacity Benefit. The government have now said that from October 2010 they will speed up the re-assessment of everyone currently claiming Incapacity Benefit so that 10,000 claimants a week are ‘processed. Their overall aim in this is to remove a 1 million disabled people from higher paying Incapacity Benefit onto lower paying Job Seekers Allowance.
These assessments which ignore GP and consultant views are earning Atos healthcare £100 million a year.
Contribution based ESA has now been time-limited to 12 months and this will remove 700,000 from receipt of this benefit for any longer than that even though people may have paid National Insurance contributions for years.
At the same time as the government claim they want to help disabled people back into work they have slashed Access to Work funding which meets the costs to employers of any reasonable adjustments needed in a workplace. Yet only 20% of people with Autism and 25% of those with a mental health condition are in employment. They are not workshy, but excluded by physical and attitudinal barriers.
From Guardian letters page June 3rd 2011. Letter from Claire Debenham, Brighton
The government says it is committed to a ‘fair and accurate’ work capability assessment. The distress and injustice caused by this new system needs to be publcised far and wide.
My brother died last week of kidney cancer. He was disgnosed a year ago and at Christmas was told he had about four months to live.In the spring he was summoned for a work capability assessment (by this time he had two brain tumours) and found fit for work. In addition to everything else, he bacame anxious about losing the small amount of money he was living on. He was aked to go in to the job centre for an interview but was too ill at the time. On May 19th he received a letter from Jobcentre plus telling him he was to be trested a shaving limited capability for work. The medical officer overseeing his case had advised that “death within six months is unlikely to occur due to the client’s cancer” and there would be no “sunstantial risk to his mental or physical wellbeing if he were found capable of work-related activity.”
He died six days later, having been unable to get out of bed for ffour weeks. What work were they suggesting he wa scapable of? He asked:”What have I paid tax and national insurance for if not help to pay the bills and feed me at ateim like this?”
Changes to Housing and Housing Benefits
These changes will affect everyone living on a low income who rents either in the social housing or private rented sectors. The majority of people who get Housing Benefit and Council Tax benefit are in work.
There are 1.8 million households on social housing waiting lists. Last year in Birmingham there were almost 19,000 applicants on the homeless person’s register. Last year in Leicester 500 people needed an accessible property and only one was available. Currently 1 million children live in overcrowded households, changes to social housing tenure and housing benefits will only increase these numbers.
The Chartered Institute of Housing has calculated that the cumulative effect of the coalition’s proposals mean that by 2020 every tenant’s Housing Benefit will be too low to cover their rent
There are plans to time limit people’s right to live in their social rented homes and it has been suggested that they will have to reapply every 2 years. If they have improved their lives by getting a higher income they may then be forced to move out of their homes. This will apply to new tenancies or if anyone moves to a smaller/ larger property. As well as removing the right to life-time tenancies it is proposed that rents in the social rented sector should rise to 80% of market value rents- a 30% increase in rent for most tenants. Together with the caps on Housing Benefits this will make renting in the social housing sector unaffordable in many higher priced areas of the country.
Local Housing Allowance, Housing Benefit for those renting in the private sector, will be reduced for the 2 million disabled people living in private rented accommodation. The Local Housing Allowance has now been set at the 30th percentile rent in each Broad Market Rental Area, rather then the 50th percentile as before. Disabled people will only be able to afford to rent in the cheapest properties in any area, which are more than likely to be inaccessible.
This change will also increase the difficulties disabled people face in finding suitable accommodation to live independently, and increase homelessness amongst disabled people. The caring Condems have said people will have to move to cheaper areas yet that may be impossible for disabled people as care packages are not transportable from one local authority to another. As each local authority has its own rules and regulations the care someone has in one area may not be the same as the care they can have if they move. It also means that disabled people will lose their trained Personal Assistants.
Disabled people with learning difficulties or those with visual impairments often need several years to be able to find their way around an area and need consistency in services like GPs, nursing services and so forth to be able to survive.
Due to the size criteria for LHA parents of disabled children are also unable to get an extra bedroom for a disabled child regardless of their needs as the number of bedrooms you can get benefit for is restricted simply by the age and gender of your children.
Already one in four homes in the social rented sector are inaccessible and often disabled people are unable to get into and out of their own homes.
Housing Benefit levels have now been capped and will be capped again under Universal Credit plans.
For families renting in the private rented sector Local Housing Allowance levels is now restricted to the 4 bedroom rate regardless of the size of your family. New upper limits will be introduced which are scarcely likely to cover rent levels in many parts of London and the South East. According to government figures about 3-3,500 disabled people rent privately in central London. DPOs in London however have raised concerns that as the centre of London becomes unaffordable to most disabled people then there will be additional pressures on local councils for example in Brent where there is already a 10 year waiting list for re-housing as more people are forced to move.
From 2013 housing benefit for working age social rented sector tenants will be restricted for those who are occupying a larger property than their household size would warrant. This is something that the Labour government and DWP tried to introduce in Welfare Reform bill 2007 but were forced to drop by pressure from Housing Associations. It means that if you are living in an adapted property which may have cost thousands of pounds to adapt then if you also have an extra bedroom you have no apparent need for you will only get HB paid at the one bedroom rate. I know 2 local disabled people who have 2 bedroom council flats – one who is blind and who needs to be able to live in a location and property that he knows well, and another who has had adaptations made to his flat who from 2013 will only get Housing Benefit for a one bedroom property which will either force them to move or push them into further poverty.
Anyone under 35 years of age who is disabled but not in receipt of middle or higher rate DLA care component will not be able to claim for more than a shared room rate if renting in the private rented sector. Yet these are exactly the same people who cannot get onto waiting lists for social housing so they have no choice other then to rent from private landlords. As DLA is now being scrapped we currently have no idea of the full impact of these 2 changes together. However for anyone with Autism or a mental health condition being forced to live in a multiple occupancy house can be very difficult. The difference in benefit payable for a one bedroom and shared room rate is an average of £47 per week and it has been estimated by housing charities that there are 11,000 too few multiple occupancy properties so we had all better get used to seeing increasing numbers of young, homeless disabled people on our streets.
Discretionary Housing Payments
Recognising the chaos their HB reforms are going to make the sum allocated by government has increased by £10 million in 2011 and by £40 million in 2012. This will apparently give more flexibility to local authorities but DHPs are not supposed to cover long term housing costs and have to be applied for every 13 weeks. There is no right of appeal if they are refused although you can seek a Judicial Review. Leicester for example has now introduced a policy where they will only pay for a maximum of 13 weeks during which time disabled people getting a DHP are harassed to move to a cheaper property, regardless of their independent living needs.
Benefits will be linked to the Consumer Price Index (CPI) instead of the Retail Price Index, so claimants will lose £300 a year as the CPI ignores any housing costs you might have.
VAT increased to 20% will hit those on the lowest incomes the hardest – it is estimated this rise will increase each household’s costs by £500 per year
What disabled people say about these changes
.“I am in receipt of DLA, without which I could not survive. I have severe allergies, home bound, mostly bedridden. I have carers, and have to pay for extra hours not subsidized by social services. My utility bills are extremely high, and I have to contribute to the rent, which is not met by housing benefits. I also suffer from malnutrition!! Being chronically ill is costly, being depending on carers for everything.
Cutting DLA would mean that I have to find housing within the Housing Allowance which is much, much lower than rental market. There are pockets of housing, in undesirable areas, with mould and cockroaches, and no amenities, no lift, or if on the ground floor, simply not safe.
I could go on and on, about the misery it would cause, to remove DLA.
It would lead to a slow death painful death. Worth adding here, I have spoken to many in my situation, who are discussing mass suicide, rather than suffer more health miseries, for which there are no cures! They are not depressed, but pragmatic about what awaits all.”