AIDS Treatment Update, Issue 55, July 1997
Tony Whitehead

How realistic is this ambition and what problems might people encounter? Organisations working with people with HIV recognise that for most it will not be as simple as picking up where one left off several years ago even if new treatments fulfil their early promise (and that is still a significant 'if' despite the current optimism).

The most obvious advantage of returning to paid employment is economic: many people, but by no means all, may expect to earn significantly more than they received in benefits. However, if returning to work means very low paid employment this advantage is lost (there are benefits that might be of limited use in this situation which I will mention later in this article). There are also other, less tangible, advantages. Donald Gray-Raus, Employment Officer from Hammersmith and Fulham Action for Disability, who has been providing an advice service for Body Positive in London says, "I personally find work very useful therapy. It increases the feeling of well-being which has a positive effect on health". Working can also dispel the social isolation that illness and unemployment frequently cause.

Difficulties of returning to work

A major concern is the prejudice and discrimination people with HIV may encounter when they try to go back to work. Some companies such as Marks and Spencers cover HIV in their own employment policies but such a positive attitude is the exception rather than the rule. There is some protection under the Disability Discrimination Act which specifically covers HIV but in practice it can be very difficult to invoke the law without the support of a union or professional body. Discrimination is most likely to occur when applying for a job or at interview. Being asked why one has not worked for a number of years is an inevitable question. It would be difficult to show that rejection at this stage was because of attitudes to HIV, to sexuality or ethnicity. Potential employers, even if not prejudiced, may well be ignorant of the success of recent developments in the treatment of HIV and would therefore regard a person with HIV as a bad risk. It is certainly true that people are likely to need time off work for hospital appointments and may require some changes in work routine (for example, the times of meal breaks) in order to manage their treatment regimen.

Long absence from work can also mean becoming de-skilled which will increase the disadvantage faced by people with HIV in the jobs market.

Economic difficulties

The main questions people with HIV will have on returning to work are:

1. What will happen to the benefits they have been receiving?

2. If the work is low paid are there 'top up' monies available?

3. What happens if they have to stop work again because of their health?

Disability Living Allowance

This is based on disability rather than incapacity for work. It can be claimed by people who are working and therefore you would not necessarily lose this benefit if you returned to work. However, if returning to work is the result of a significant improvement in the extent of your disability it might be considered as evidence of a relevant change of circumstances that could lead to a loss of DLA. If you receive DLA under the 'special rules' for terminally ill people, the position is even more complicated and you may well find your DLA is taken away once the DSS become aware you have started work. However, until more people do go back to paid work it is difficult to predict with any confidence how the DSS is going to react.

Incapacity Benefit & Severe Disablement Allowance

These are lost when you start work unless that work is unpaid or is classified as 'therapeutic work' and less than 16 hours a week.

Income Support

In most cases this is lost as soon as you start work. There are exceptions which might apply to some people with HIV, for example where a mental or physical disability significantly reduces that person's earnings capacity. As in all else to do with benefits, the rules are complex and specialist advice is necessary.

Housing & Council Tax Benefits

These can be claimed by people in work on very low earnings. You would need to make a fresh claim as soon as work starts.

Disability Working Allowance

DWA is meant to help people with long term illness or disability return to work and can be claimed by people in full time work (greater than 16 hours a week). It sounds very useful but in practice the rates of benefit are so low that very few people will qualify.

Child Benefit

This is payable regardless of whether you are working or not working.

Stopping work because of illness

If you find you are unable to continue working because it is too much for your health it is possible to go straight back on to certain benefits. For Incapacity Benefit the time limit is 8 weeks. It is also 8 weeks for Income Support and the Disability Premium should also resume if this was in payment. Housing and Council Tax Benefit require a fresh claim if it is more than 4 weeks since you last got those benefits. The concern that many people I have spoken to share is that if you have to stop work after the linking periods and make new benefit claims you may receive less money than before.

Returning to education or training

In the Kobler Centre survey, 39% of respondents expressed these options as their preference. A majority of the health workers I have spoken to regard this as a very sensible step on the path back to employment. It involves some of the problems that going back to work entails - travelling, sticking to a timetable, coping with some stress - but these problems are likely to be much less than if one's livelihood depended on it. Retraining will address the difficulty of having become de-skilled through long absence from work, and most importantly, may not mean the loss of benefits.

DLA should not normally be affected. It should also be possible to continue to claim Incapacity Benefit although the DSS might question whether the claimant is now well enough to work if they are well enough to study. In general, full time students cannot claim Income Support (including holiday periods). However students who qualify for the Disability Premium or who have been incapable of work for 28 weeks or who are lone parents can continue to claim. The amount paid will be affected by the value of any grant they receive. Students with IS will continue to qualify for full Housing and Council Tax Benefit.

The range and complexity of these issues facing people with HIV seeking to go back to work is increasingly a major focus of attention for HIV organisations throughout the country and a number offer employment advice and support services. The social security benefits implications of returning to work should always be checked through with a skilled adviser; try approaching the Terrence Higgins Trust or a local Citizens Advice Bureau. In particular, people from abroad and asylum seekers should always seek advice before starting work.

The UK Coalition of People Living with HIV/AIDS has recently started a 1 year 'return to work' project looking in detail at training needs, working with employers to provide guidance and job placements, and with continuous support for the people with HIV involved.

All in all, going back to work is not going to be easy but everyone I have spoken to in preparing this article shared a greater sense of optimism than I have met in the past 14 years of my involvement with AIDS.

CREDITS

The Kobler Centre Work and Benefits Audit was conducted by Dr Mike Youle, Phil Holmes and Gareth Owen.

My thanks to the Terrence Higgins Trust for "Benefits for People with HIV", Donald Gray-Raus of Hammersmith and Fulham Action for Disability, Martin Skipworth of Body Positive, David Mottram and Denise McDowell of George House Trust, Gareth Owen of Chelsea and Westminster Hospital.

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