What is the review?

The Disability Living Allowance and Advisory Board have announced a review of all “special rules” Disability Living Allowance cases awarded more than 3 years ago. This follows a legal review, a consultation with relevant care groups and a pilot survey of a small number of awards made more than seven years ago.

When will this happen?

The Disability and Carers Service (DCS) will carry out the review over the next year. The review will initially affect anyone who is under the age of 55 and on special rules benefit.

Why is there a change?

A number of people with HIV were awarded this (DLA highest rate care component) on the grounds, accurate at the time, that they were reasonably expected to die within six months. However, the introduction and development of combination therapy has led to the life expectancy of people with HIV improving a lot over the past decade. Combination therapy has also changed the care needs of some people.

Our role

We understand that this is a very worrying time for people who receive special rules DLA and we're here to support you through this process, provide you with the relevant advice, and help you get the best result you can from the review.

In the event that you do lose benefits we can provide you with support and help in adjusting to the changes.

You don't need to face the review alone - get in touch with THT Direct for support.

Working on a political level

The DCS consulted Terrence Higgins Trust (THT) and specialist doctors about the long-term health and social issues faced by people with HIV. They did a similar exercise for people with cancers, because records showed that people in these two categories were particularly likely to have lived much longer than the original award assumed.

THT highlighted a range of issues including: the difficulties people with HIV could face in returning to full time employment; how dependent some people claiming DLA may be in using it to manage their day to day condition; the impact of depression and other mental health issues on long term survivors of HIV. Clinicians involved in the review agreed with these and also highlighted treatment side effects and ongoing clinical problems for many long term survivors.

We are aware that reductions in benefits are likely to cause hardship and distress and are working with the DCS to ensure that the review is carried out as sensitively as possible. Along with other organisations we continue to meet with the DCS about this review and we have a chance to comment and raise further concerns.