Following on from previous post.

"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.

Comments from elsewhere

"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.

Thanks

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

Thoughts.

People seem to have a strange attitude when it comes to acknowledging or discussing any state benefit they receive. I think it is a very British thing. I know myself I value my privacy. However for some, the most vulnerable. This may cause severe hardship.

I look forward to hearing from you about your situation. I will post and keep your information confidential.

It is only by bring this out into the open that we as a community can gauge the scale and impact this is having.

It may already be too late to have any direct impact. But six months down the line or at the next review of DLA the lack of detail will merely support the decision makers view that this last change has had little impact.

Ball is in your court!

Various Acts of Parliament.

From what I can fathom the order of Acts relevant here are :

"Social Security Contributions Act 1992 Chapter 4"

amended as/by


"Welfare Reform & Pensions Act 1999(c.30) clause 67"


"Welfare Reform Act 2007 clause 52"

Benefits & Work Link fixed - Sorry !

Am I entitled to Disability Benefits?

Though this is covered a little in my previous post. This was going to be my first post today.

You may be entitled to extra help from the state if you suffer adverseley with your HIV. There are several benefits & entitlements you may be able to receive to help you with day to day living.

You can apply whether you are working or receive state benefits.

You might be entitled to financial help with your day to day living needs. This is covered by a benefit, Disability Living Allowance. It is awarded in three bands - lower, medium & higher.

You might be entitled to financial help with your day to day mobility needs. This is called Disability Mobility Allowance. It is awarded in three bands - lower, medium & higher.

APPLY if you think you might have a claim. The experience I have heard from many. Is that you will probably be rejected on the first claim. APPEAL. Many claims are accepted on appeal.

Disability allowances are not like other benefits you might claim. If you need to also claim or claiming any other benefit i.e. Incapacity Benefit (IB). These disability allowances DO NOT count as extra income when it comes to entitlements. Whereas the savings in your "piggy bank" might affect the amount of Income Support (IS) you might get. Any amount you receive in disability benefits will not be considered as extra income.

The make up of your other benefits might change. You may even get more. As disability elements within for example IB could be added. It may even entitle you to a discount on your council tax.

If you have a successful claim for a Mobility allowance. Depending on the level. You may be entitled or able to apply for the Mobility Scheme, Blue Disabled Parking Badge, exemption on car tax or a Freedom Pass.

Look at the links panel for extra information on the "THT","Disability UK Govt. Website" and "Benefits & Work". You can also ask at your local "Citizens Advice Bureau" or local HIV clinic.

My response.

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.
10) Many will have been symptomatic at the time of initial application. Suffering from AIDS. Damage will have been done to the immune system. If the prognosis changes in the short term. The last thing anyone suffering will want to do. Is tackle the state over a further review of their entitlement.
11) Not all medics you state on your form will be approached for a medical opinion.
12) The DWP medics may not be specialist in the field of HIV.

This is just off the top of my head.

If you have not claimed Disability Living Allowance and feel you might be entitled you should submit an application. You can do so here "DLA Application & details"

NOTE: Always ask for a re-review of your decision if you feel it was unfair. If the re-review agrees the initial decision then ask for an appeal. See the Guidance -Read this on the main web for info. Many applicants are only accepted on appeal. It seems to almost be a policy to always deny a new application.

A few points raised by an individual elsewhere

So - they are planning to take away DLA from people with HIV who got the benefit on the basis that they were expected to die, but now, thanks the meds, they are going to live?

I can see why this would be annoying, but could it be that they are just looking at the situation, and trying to limit DLA to those that need it?

I'm poz - and have mates who have been poz for many years. Some of them are getting DLA - which I can understand given that when they were awarded it under the 'special rules', they weren't expected to live long.

However, many (not all) of these guys are very healthy - so I can kind of understand why their situations need to be looked at again.

Of course - I agree that those that really need DLA should get it - but I know many guys that get it who really don't need it.

As with any benefit, there is always a risk that people can get so used to getting it that it becomes difficult for them to see how they could cope without it.

However, I think in general, it's a good idea that people's needs be reviewed periodically.

What do you think?

My experience thus far !

Nov 2007

Recieved review form at the end of November.

Searched the internet for information.

Checked THT website - nothing mentioned.

Dec 2007

Emailed all interested or parties that maybe able to help including THT.

Link appears on THT main web page

Emailed medics to tell them to expect a request for medical report.

Spoke to DWP about the review. Told (call recorded) that nothing should change they are just updating their records.

Speak to friends and find out they have had benefit removed.

Jan 2008.

Medics inform medical report has been completed and sent back to DWP.

Still searching the internet. Nothing. Find "Benefits & Work" website. Useful but not HIV Specific.

A chance meeting with a Medic at a well known London Clinic told " they {DWP} are being strict on the reviews, many loosing benefit".

Decide to do something to pull in information from those who are, have or maybe going through this. So that we can all learn from each others experience.

Waiting for response !

Email referred to in Welcome post.

I would like to bring to your attention the current "rolling program" of Disability Living & Mobility Allowance (DLA) and Attendance Allowance (AA) Reviews being undertaken by the Department for Work & Pensions (DWP). You or your organisation may be able to help. Please pass the information on to interested parties.

There is a petition on the Downing Street Website concerning this matter which can be found here : "10 Downing Street Petition"

It reads as follows

"Right Payment Programme
The RPP was introduced in May 2007 with no prior consultation and no publicity to replace Periodic Review (PR) Under PR, a large proportion of DLA recipients with chronic health/disability were exempt from PR. However, without any prior warning or consultation these exemptions have been withdrawn, and the only exempt groups under RPP, are those with terminal illness, or those awarded DLA in the last 12 months.
The effect of the above is that many chronically sick/disabled people with chronic and incurable conditions will face having their award reviewed, and possibly reduced or removed altogether. We feel that this a retrograde step, and will lead to the errors which resulted from the Benefits Integrity Project (BIP), the predecessor of Periodic Review, which was halted by the government in 1999 as a 'disaster'.
We respectfully request the Prime Minister to review the highly likely effects that RPP will have on many DLA claimants and call on him to instruct the Sec of State for Work and Pensions to afford the same exemptions as were in Periodic Review to the Right Payment Programme."
Many HIV people who receive this benefit are subject to this review. Currently many disabled people who have been reviewed are loosing the benefit and are having to re-apply.”

This will place those with HIV in receipt of these benefits and unable to work into severe hardship & poverty.

Any change to payments or levels of Disability Living Allowance will have an impact on other benefits i.e. Incapacity Benefit and the disablement components elsewhere, Blue badges, Freedom passes etc.

There has been little mention of this change in the HIV media & movement thus far. According to the DWP website. Lisa Power of "Terrence Higgins Trust" , "DWP DCS Link" , is a "Member Group" of the Disability & Carers Service. Yet I found no information the Terrence Higgins Website.

I would ask that you encourage people to sign the petition on the Downing Street Website, write to their member of parliament & spread the word about this.

This doesn't just affect HIV+ individuals but all disabled people currently in receipt of the high level of payments under the special rules.

There may also be a case to answer under existing law concerning discrimination. As a specific group of disabled people with be targeted. Other sources of information can be found here :

"Disability Alliance"
"Disability Carers Service (DCS)"
"Benefits & Work Forum"

Welcome !

Hello,

I am starting this blog due to the lack or resource available on the internet in the UK concerning the 2007/8 review of Disability Living Allowance by the DWP (Department of Work & Pensions) following changes to the rules. Although this change effects all those on the "Higher Rate" awarded under "Special Rules" or claims older than 2 years. I have a specific interest in those who are and suffer from HIV.

When I recieved my review. I tried looking for help online to no avail. I subsequently emailed various interested parties including, THT, i-base, Positive Nation etc. A copy of the email is below.

If you have been affected or are affected I would like to collate the experiences here.

Please add to the blog or email me at john@ffskins.co.uk and I will add it if relevant.

Thanks.