Laurence Gibson assesses what financial help is available to you if you need support living with HIV, and how to escape the benefits trap once you are caught in it
As an HIV positive individual, you may feel unwell or temporarily tired and unable to work. You are therefore likely to need some financial assistance from the state while you are out of work.
 Illustration by rose hardy |
So what benefits are available to you? How do you go about applying?And, more importantly, what happens when you start to feel better? When you begin to get your energy back? How do you go about getting off the benefits that you have come to rely on?
(This article concentrates on benefits available to people who are entitled to work here. We will cover support for people going through immigration procedures at a later stage.)
First of all, if you become unwell, there is Disability Living Allowance (DLA). Anyone can apply for DLA, so long as you are aged 18 to 65. Application forms can be obtained from any DSS office or by ringing the number at the bottom of this article.
DLA depends on the severity of your illness or disability and is divided into two sections: mobility and care. In the care component, there are three rates.
In order to qualify for the highest rate of care, you have to be shown to need attendance and supervision from a carer day AND night. If you get awarded this, you will receive £57.20 per week.
To qualify for the middle rate, you must be described as needing supervision day OR night. If you are awarded this you will receive £38.30.
If you get the lowest rate of the care component, £15.15, you supposedly cannot make a main meal for yourself, and need help in doing so.
If you qualify for any rate of DLA then you will automatically receive an extra payment on your Income Support, known as the disability premium. The middle and higher care rates also entitle you to additional premiums on top of this.
The mobility component has just two sections: higher and lower. To receive the higher you must be described as being unable or virtually unable to walk, or have had both legs amputated - so don’t hold out too much hope. If you are entitled, you’ll get another £39.95 per week once you are awarded this.
The lower rate is available if you need guidance and supervision while outdoors and is worth £15.15.
Disability Living Allowance is not means-tested in any way, so anyone - even royalty - can apply, if they so wish! It is also disregarded as 'income' for all means-tested benefits, so will not in any way reduce the money you receive from, say, Housing Benefit or Income Support.
Income Support is a means-tested benefit that you can apply for if you are
unwell and incapable of work; you will need a medical certificate from your
GP or physician to prove this. You need to bear in mind that if you have savings
or other income such as a pension, then your Income Support payments may be
reduced or you may be disqualified altogether.
If you were previously at work, but stopped because of your illness, then it is possible for you to apply for Incapacity Benefit. This benefit is designed for those who were working but were forced to stop because of sickness or disability.
You must have been paying National Insurance contributions for the two years previous to your illness in order to qualify for the benefit.
Housing Benefit is more straightforward. You can receive help with all, or most of, your rent when you receive income support or incapacity benefit.
Contact your local DSS office for more information about these benefits, if you think you may be eligible.
PN spoke to Mary Sunshine, a 37-year-old HIV positive woman from Glasgow: “I was working as a sales and administration assistant until I got a horrible, nasty flu that got worse and worse. At first, I just tried to ignore it, but it wouldn’t go away.
“I was diagnosed positive a few months later, and thought that my world had ended.
“The job which I had been doing was the first to go, and so I needed to get on benefits. But I saw them as a temporary answer to my problems. I never considered them to be the final solution, if you know what I mean.”
She received Incapacity Benefit, because she had been paying her NI contributions for years before she became unwell.
“But then the disease really took hold and I developed PCP and everything. I thought there was no future for me, and I was started on DLA. I got the higher rates for both care and mobility.
“Nevertheless, I used this time very carefully. I had enough benefits not to worry about money, for that time at least. I could have rested on my laurels then, but I didn’t.
“Instead, I used the period when I had all those benefits to consider a few things. I thought about why I had caught this disease; I thought about how I could make things better; I thought about what I really wanted in my life. I re-addressed everything, and started to go about putting all the pieces back in place.”
Now, some eighteen months after her initial Aids diagnoses, Mary is fighting fit and back at work, as a scriptwriter for a television company.
“I used the benefits well,” she says. “I never became dependent on them. They were there for me when I needed them, and I simply moved on.
“Life is about making choices. You are free to choose whatever path you take. And free to choose again.”
PN spoke to Andrew Watts, from Liverpool, who was diagnosed with an Aids-related illness six months ago: “The benefits are really difficult to get,” he said. “No matter how many times you fill out the damn forms, they always come back with some reason that stops you getting the benefits, particularly DLA. It is an uphill struggle.”
If you are already on benefits and want to get off, or feel trapped in a situation where you think you cannot get out of the benefits trap, then what should you do?
Robin Ramsdale, Welfare Benefits Manager at the UKC recommends that if you
are applying for benefits or your circumstances change, then you should always
get professional advice. "Our team deals with over two hundred cases a
year, and even we find the benefits system a minefield, but with the right
advice, things can be made relatively straightforward."
Robin explains: “A lot of people think that if they go back to work then they lose all their benefits, but that's not necessarily true. Housing and Council Tax benefit may still be payable, and DLA shouldn't be affected. You may also receive the Working Tax credit if you are disabled and go back to work for over 16 hours per week.
“We can help people with budgeting, and can compare the amount you get while on benefits with the amount you will get if you go back to work.
“You may feel that right now you are fit enough to go back to work, but might be worried about becoming ill again in the future, and that you won’t be able to get your benefits back, but there are rules to protect your entitlement. So you should just give us a call.”
[If you live outside of London, contact your local HIV group and they should be able to put you in touch with someone who has expertise on benefits. The Citizens Advice Bureau is also a good starting point.]
Once you have secured your benefits, and given yourself some time to breathe - do just that. Breathe. Consider what work you might like to do. What really inspires you? What could you do to start making a difference, in your life and in others? Get in touch with the UKC or your local HIV support group and start to figure out a plan of action.
In the words of Mary Sunshine: “Don’t just sit around and feel sorry for yourself all your life. That’s not healthy. Get on and do it.”
Positive Peer Advice (UKC): 020 7564 2180 |
Some of the names in this article have been changed.
