Reviewed June 2008

Next review, June 2009

Some people with HIV are receiving a state benefit called Disability Living Allowance (DLA).

There are two components to DLA: one for care and one for help getting around and these components are paid at different rates.

Some people with HIV are receiving the highest rate of the care component under what are called the ‘special rules.’ This means they were awarded the benefit because, at the time the decision to grant the benefit was made, their life-expectancy could have been as low as six months.

The government is currently conducting a review of DLA awards made under the special rules. This review started in November 2007 and is expected to last for a year. Everybody who has been receiving DLA under the special rules for three or more years and who is under aged under 64 will have their award reviewed.

People affected by the review are reporting anxiety and distress and this factsheet provides some information about the background to the review; what happens when your entitlement is reviewed; and where you can go for further information and support.

Background to the review

It’s thought that a few thousand people with HIV are receiving the highest rate of the care component of DLA under the special rules. Most of these awards were made ten or more years ago, often when these people were very ill because of HIV and before effective anti-HIV treatment was available.

At this time the award was justified because the seriousness of HIV infection at that time meant that it was quite possible that they would have died within six months.

But anti-HIV treatment has transformed the life-expectancy of people with HIV in this country. We’ve only had effective anti-HIV treatment for twelve years or so, but the results are so good that doctors now talk about people with HIV having a life-expectancy of decades, and expect that most people with HIV in the UK and similar countries have the chance of living a more or less normal life-expectancy.

What will happen

Everyone who has been receiving a special rules award for three or more years and is 64 will have their claim reviewed by the end of 2008.

There are a number of steps in the review process. It takes a number of months for the process to be completed. You will continue to receive your DLA throughout this time. It currently seems that about 60% of people keep their existing DLA award and about 30% have their award changed. The remaining 10% are exempt from the review.

• You’ll receive a letter and a form to fill in (DBD551). Do not ignore this.
• Try and talk to your doctor and tell them they will be receiving the request. It is important that your doctor understands how HIV is affecting your health so they can provide accurate information.
• Complete the form DBD551. You’ll be asked to give details of your medical condition, the medication you are taking, and the healthcare professionals who look after you. If you don’t want them to contact your doctor, then tick the box saying this. But this will mean that a decision on your award will be made without up to date medical information.
• Return the form to the DCS within a month of receiving it. If you need more time, contact the DCS.
• The Decision Maker at the DCS will contact your consultant for details about your health, symptoms, CD4 cell count and viral load.

The Decision Maker at the DCS is not medically trained. It is therefore vital that you make sure that you’ve mentioned on the DBD551 every symptom or side-effect you experience, and detail the help you need during the day and night. Do not rely on medical jargon or use “HIV” or “AIDS” as a single definition of your care needs.

• If the Decision Maker want more information they will send you a form to complete. This is called a DLA556 and is quite long. You need to complete this form and return it as soon as possible. Help is available from the Citizens Advice Bureau (CAB)  or HIV support agencies if needed.
• Once the DCS has all the information it needs it will make adecision. They will write to you  informing you of this.
• If you don’t agree with the decision you can ask for it to be reviewed.
• If you do not agree with the results of the review, you can appeal. To do this you need a form called a GL24 which can be obtained from the DCS, a CAB or a Jobcentre. Your appeal will be considered by an independent Department of Work and Pensions tribunal.

If you continue to be entitled to DLA under the special rules you will continue to receive the benefit. It is likely that the award will be limited to three years and then reviewed again.

Should it be decided that you are no longer entitled to DLA under the special rules, then your entitlement to the care component under the normal rules will be assessed. The care component is paid at three different rates, depending on the amount of help you need with day-to-day tasks.

You will not be asked to repay any money if your DLA is stopped.

Where to go for information and support

• HIV Treatment Update. The March 2008 edition had an in-depth feature article about the DLA review. Free copies are available from info@nam.org.uk, telephone 020 7840 0050.
• THT Direct 0845 121 21 200. You’ll be able to get information about the review and you can be put in touch with specialist benefit advisors who can help you with all steps of the review process. There’s also a lot of information about the review on http://www.tht.org.uk/.
• Disability Alliance. Their website has information about the background to the review and what will happen. http://www.disabilityalliance.org/special.htm.
• Disability and Carers Service administers DLA and is carrying out the review. Their website provides information about the background to the review and basic information about what will happen.
• Citizens Advice Bureau (CAB) provide free, confidential and independent advice from over 3,000 locations including in CAB offices, GP surgeries, hospitals, colleges, prisons and courts. You can search their website http://www.citizensadvice.org.uk/ to find your local office.
• hivbenefits.co.uk. This blog has almost daily posting from an HIV-positive man who is currently going through the review and provides a personal perspective of the process and an opportunity for networking. http://hivbenefits.co.uk/.