Thanks to Jim (Tcell) for raising this. Also thanks for Steve (who is a Benefits Writer & Trainer) of the Benefits & Work website for coming back so quick with an answer.

The issue was:

"If I ask for a re-review or an appeal. Could that process result in the original decision made. Being lowered or my Disability Living Allowance being removed?"

I posted this to the members forum on Benefits & Work. You may need to subscribe to get access to this.

Steve replied:

"I'm afraid the answer to your question is that when you ask for a decision to be looked at again your award can be reduced or removed altogether. That applies regardless of the nature of the decision you are asking to have looked at.

Clearly the likelihood of this happening will depend very much on what evidence there is to support the current award. It's part of a welfare rights worker's job to assess the strength of a case and advise on the degree of risk - but there will always be some."

Someone suggested that http://www.benefitsnow.co.uk/dmakers/default.asp might be useful for people to know about.

However, like many sites on the internet. Where Disability Living Allowance is mentioned. It can mention and relate to the "Disability Handbook".

This handbook once used by Decision makers. Has been superseded by a computer based "Customer Care Management System". This system using different modelling methods.

The Disability Rights Handbook 33rd edition - April 2008 to April 2009 is available for purchase from the Disability Alliance website.

See the news articles on this at the Benefits & Work website. You may need to be a member to read these.

Benefits & Work - "New DLA 'points' system: zero for heroes - and many others"

Benefits & Work - "DLA Disability Handbook Ditched" {membership required}

You may also find the section on 'DLA resouces" on the Benefits & Work website, quite useful though you have to join the site to access it.

Some have mentioned. That whilst they have been unable to work or secure a job because of the discrimination & stigmatism they have faced.

That they have undertaken various forms of study that they have been able to fit in around the day-to-day problems they face with their HIV.

Some have at least one, if not, more degree's.

Yet when they try an apply for any job. The fact they have this wealth of educational achievement. Once HIV is mentioned. This seems to fall by the wayside.

They also face the issue of being "over qualified" for certain jobs.

Just thought I would mention this as an issue as I haven't picked up on it so far. I is just another problem we might have to face.

Clearly this indicates that people are willing to improve themselves by undertaking such activities. Well done if you have managed to do this.

Trying to get access to education is slightly easier than trying to get a job. But can also raises some common issues.

Most educational establishments will understand you have "bad days". That this can mean long periods where you cannot study. Will be compassionate to your lack of attendance. As they will usually put in place processes to ensure you do not suffer adversely.

The HIV community is not alone in this cause. What we do through this web portal. Has a direct bearing and the experience & information given. Can and should be used by the wider disabled community. We are all in the same "boat" here.

To that end.

I interact with the wider community via The Benefits & Work website.

I have a forum on the site - DLA Review & the HIV+ Community, How our community is coping. At time of posting this forum has recieved 1000 hits.

Please take some time to familarise yourself with this website.

Thanks to Steve the owner of the site for his continued good will and support.

This site is a resource that you should use if you are trying to empower yourself to deal with any benefit issue. It does cost. However it is a good investment. We don't cover everything here, in detail. Also I will not replicate any of Steve's work on here for free. He deserves our support.

I have started a forum on the Benefits & Work website. Please feel free to read & contribute.

Click here for this forum.

The BBC have held some online debates in Benefit Changes on their "Have Your Say" section of the BBC News Website.

I post as "hivbenefits" to contribute to these issues.

I have posted to the

"Does system of incapacity benefits need reform?" debate.

"What should be done about sick note Britian?" at time of posting waiting for my comment to be moderated

"I think I did not make my point clearly.

DLA should be in place before the need becomes so critical that it HAS to be there.

I don't think its right to hang on till you meet the current level before applying or even waiting till they raise the requirements again.

So what if that means that a very few people get DLA who don't actually need it at the time. It should be seen as a preventative measure to stop those people becoming sicker. The money is actually quite a small amount in terms of the UK state spending on health and care.

I wish everyone in the uk who can applie for benefits does, thats why we pay are taxs after all. I hope they don't raise the bar higher and good luck fighting it."

Thanks - though this is affecting roughly 50,000 people of all disabilities. It amounts to a few thousand who were HIV and applied under special rules at the time.

"when I was living with someone who was positive we knew of people who held off appling for DLA till they REally Really needed it, the proscess was so long and so stressful at least two of the people who claimed died before their awards came through.

So yes it should just go to those who need it but it should be there when they need it not be so late or so hard to get that its not worth having."

My response :

I agree whole heartedly with your comments. Please accept my sympathy on to you for your loss.

This is a complex issue. However I would agree with your main point. It is when it is needed the most. When one is not necessarily able to apply. That the system needs to facilitate a speedy response.

However, the higher they raise the bar. Those that needed, when they need it. May not pass the bar upon initial application. Many applications are granted on appeal.

Would someone ill be able to deal with an appeal process?

Thank you for taking the time to comment.

For those of you who have read my post on another forum thanks.

Thanks for taking the time to post.

Yes I agree with the core point you raise. Namely that all benefits should be reviewed periodically. It is not only HIV recipients who are being targeted here its all claimants of various disabilities. However the effects of HIV are person specific given it's genetic makeup. The issues so far as I can establish, as well as the auspices and manner under which this process is taking place, are :

1) The decision makers apply a standard model when making that decision. Not taking in to consideration person specifics.
2) Many have recieved this benefit for many years. There illness & the fact they are out of work place for many years. Means they would be regarded as unemployable. Unable to make up the shortfall in any loss of income.
3) Many of those suffer the effects of living with HIV for many years, medications etc. Therefore HIV is not the only chronic condition suffered.
4) Death may not be as immediate as it once was but the level of disability suffered on a daily basis can be severe.
5) Many are worried and very anxious about the lack of information available. I was frustrated.
6) Those who suffer with HIV are amongst the most stigmatised groups in society. Funding for other organsiations is being cut reducing the charitable routes that could help given the withdrawal of this benefit.
7) Several million claim "Incapacity Benefit". This review affects less than 50,000 or all disabilities. A few thousand of whom have HIV.
9) Many of the people you know who seem healthy that you know. May be so only because the extra income allows them to feed themselves properly, keep there homes warm. Also should they become ill it helps with the incidental costs that could be assoicated with it.