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"

The Disability Alliance. has published some case law on Attendance Allowance under the title of this entry.

Click here for the Disability Alliance attendance allowance and disability living allowance case law digest.

Click here for Disability Alliance - Adjudication case law digest.

And for latest posted decisions, click here.

thanks to Wharfside Patients Forum for this ..

Appeal reference CDLA/14594/1996.

It can also be found on the Disability Alliance attendance allowance and disability living allowance case law digest and associated links on the panel on the right hand side.

The KVN Forum is the patient group giving a voice to HIV patients from the Chelsea & Westminster Kobler, Victoria clinics & Nkosi Johnson Unit.

It is the patient forum which represents me as a patient within it's patient base.

At the meeting held this evening as the "DLA Review" was on the agenda I attended for the first time mainly to contribute to this subject. I am grateful to the forum for allowing this discussion. Also it allowed members to put a face to this blog.

Further more, such was the feeling, that the KVN forum. Hopefully will make this a main agenda issue/topic for another meeting. Thanks.

If you are a patient at any of the aforementioned clinics you can join the forum from their website. Even if you cannot attend the meetings you can still contribute to your care via this forum.

A question was raised by a fellow forum member about when the change was made to the award from " For Life" to "an indefinite period". There was also confusion over whether this was a pilot still or an ongoing process.

Under the post "Various acts of Parliament" the Welfare Reform & Pensions Act 1999 (C.30) Clause 67. Sets out the change from "for life" to "an indefinite period."

For details on the review see the special rules report from the Disablilty Living Allowance Advisory Board. Note this will download a "pdf" postscript file. Provides the background to the review.

Of course I could not post following the previous entry from my co-author with out mentioning the excellent result that gives some hope to the rest of us.

Not unrelated to the DLA review. Many also claim Incapacity Benefit. This raised other issues. The emails I get are mentioning this subject also. Here is what I understand. Please feel free to email or comment if I have any issue wrong or with your experience.

Disability Living Allowance/Other Benefits

If you receive other benefits where the amount you recieve is dependant on the level of DLA you get. I can only assume that these benefits levels may be lost or reduced depending on the level of DLA you will get post your review. You have a legal duty to declare on forms sent to you to ensure your information is up to date. Check with your Solicitor/Welfare Advisor/Social Worker for clarity.

Incapacity Benefit

The Welfare Reform Act 2007 comes into force later this year. They are replacing Incapacity Benefit, Jobseekers Allowance & Income Support with the “Employment & Support Allowance”. As far as I can gather. I have just started reading the explanatory notes before tackling the act. Those applying will get a basic allowance. Following an assessment period (13 Weeks max.). You are then awarded either a work supplement which will require you to engage in activity towards finding a job. Or you will be awarded the support supplement. The support supplement will not place a duty on you to engage in the "seeking work conditions" of the work component. Though the support supplement will be reviewed yearly.

"Congratulations on setting up this blog - the first thing you seem to learn with hiv is that when it really counts the one thing you can always be sure of is that you're usually on your own!

I am in the same situation regarding the DLA review, trying to access some guidance concerning the DLA556 form, and had the same experience with THT - although they tried to be as helpful as possible on the telephone (I found myself feeling sorry for the guy, who spent ages trying to locate someone), the organisation's management doesn't seem at all interested in providing the kind of support that people living with hiv are looking to them to provide - but I guess that that is hardly a new story! The excuse is funding as you say, but I did a research project involving the archives of a major funding charity for hiv nad AIDS a couple of years back and alot of orgainsations in the past seem to have done tremendously valuable work focused on the needs of people affected by hiv with access to far poorer funding than THT currently enjoys.

The only resource available to me in Harringey, in north London, is also on a single opportunity, once a week, basis for 3 hours. You can't book, and their answerphone message announces that they will not respond to messages - I can vouch for the fact that they don't!

With time running out to complete and return the 36 page form, I've realised that to have any chance of a fair review I will have to pay a minimum of £300 to a solicitor (I bought my home years before I got the boot from my job, so have too much equity in it to qualify for legal aid - but obviously you can't eat bricks and mortar and you need a roof over your head). This is a very stressful and unhappy situation, and I know that I, at least, feel badly let down."

I have written to the Minister for Disabled People, Secretary of State DWP & the Chairman of the Work & Pensions Select Committee.

"If only to dot the i's and cross the t's"

Be interesting if I

a) get a reply
b) content of reply.

Will post to web complete correspondence in due course.

I am receiving comments, thank you all, about stopping medication.

I doubt that stopping your medication will have any impact other than to your health & long term prognosis.

HIV is seen as a chronic condition. So long as treatment options are available for you. The state may take the view that your condition is treatable. Therefore your decision. Mental issues aside. To stop or not taking your medication is purely your choice. They may take the view that the State is provinding the support, medically that you need. To manage your condition.

However, unless you have no treatment options left. That is, you are resistant to all existing therapies & they cease to control your HIV. Where your prognosis is defined medically as "Terminal" with a short term life expectancy. This is clearly a different case. Different rules apply. Notify the Department for Work & Pensions.

Special rules still exist if you are terminally ill.

It is likely few with HIV would be in the situation.

If you are reading this and your prognosis is "Terminal". Please know you are in our thoughts.

The HIV medics are worried that people may stop their medication because of this. Stopping your medication is not likely to improve your chances with respect to any review you may be undergoing. It will merely put you, your loved ones & the NHS under pressure.

If the above is unclear. Please feel free to email me.

Emailed to me from Jim. Edited as requested.

"I was talking with a Benefits Advisor this morning at my local hiv support service and mentioned to her that I had received an IB50 Incapacity for Work Questionnaire.

She queried the fact that as I was on the Highest Rate of Care Component on DLA that this was not necessary to complete. She then accessed on the web the regulations - link below

http://www.opsi.gov.uk/si/si1995/Uksi_19950311_en_1.htm

She then pointed out that under Part II Chapter III Paragraph 10 the first caluse under 2(a) states

exemption due to "that he is in receipt of the highest rate care component of disability living allowance".

Subsequently we phoned my DWP office and when I spoke with the agent he at first said that he was unaware of this exemption but on checking came back on the phone and said that this is correct and that I should ignore the form and that he would be advising Medical Records who would amend my records accordingly - and that I would be receiving a letter outlining my new next year benefit (I intend to check up again in a week's time by phone just to be sure that it has been amended as stated).

So it may be that you were/are aware of this, but thought that it may be wise to put it out there for anyone else in the same situation."

Thanks for this.

The DWP have started a public consultation entitled :

Helping people achieve their full potential : Improving Specialist Disability Employment Services.

You might find this of interest and can submit your comments. Click the title to go to the consultation.

If you want to see what is new at the DWP Click here

Want to know the standard of service the DCS is working to in processing your claim.

Click here.

I strongly recommend you read the detail on the DWP here.

Click here to navigate to the DWP Corporate Medical Group HIV/Aids information.

You may find this useful as to understanding how the DWP interpret with in the bands - Mild / Moderate / Severe Functional Restriction. Found in the Care and Mobility Considerations.

This table on "Most common disabling conditions" is also worth a look.

My partner is also going to add some downloadable charts to the document page. These are a flow charts showing the dependancies between the DLA & other benefits. There are two, one for under 50's one for over.

ALSO HELP Positive Nation if you can as described in the post below this.

A few weeks ago, under the Auspices of the Data Protection Act. We requested that the Department for Works & Pensions (DWP) provide us with all clerical & computer records held on us in relation to Disability Living Allowance (DLA)

We received a response today.

They will "issue the records" as soon as possible and within 40 days of our request.

They have made no charge for this thus far.

The Royal National Insitiute of Blind People have published on their website. Some advice & guidance on

Attendance Allowance

Advisor's guide _ how to claim Attendance Allowance - tips for advisors

Disability Living Allowance

Challenging a Decision about DLA & Attendance Allowance

Though this advice is from a "blind person's" view point. The central themes & processes apply to anyone claiming either allowance.

I hope this helps and empowers you with your claim.

Thanks to Nigel (of the Tcell team) for his research here.

Work & Pensions Committee. From the Clerk.

I received a response to my letter this morning it reads:

"Thank you for your letter of 16th February to Terry Rooney MP. Chairman of the Work & Pensions Committee, enclosing your letter to Anne McGuire MP, Minister for Disabled People, concerning the review of Disability Living Allowance.

I will circulate your letter to the Committee and I will be in touch if the Committee decides to pursue this matter

Signed by the Clerk of the Committee"

So we are making more people aware.

Letter is on the process of being upload to the documents section of the main web site.

So as not to fall foul of identity fraud. Mindful of the Human Rights Act. I have removed identities on the letter. The name of MP's are already in the public domain & thus expempt from this consideration.

Thanks to Nigel, one of my Tcell colleagues for this. (the power of team work)

You may be a retired member of a Trade Union. Only you will know your membership status. Call them. They may still be able to help you. As a member albeit (retired) you still have access to the services of your Union. They may also have a "hardship fund" that you may be able to access.

Also if you consider work. Worthwhile joining a Trade Union to get the protections is affords. Trade Unions will only deal with issues you face after you have joined them by the way. There may also be a qualifying period before support is given. Check with the union directly.

If you are looking to understand what avenue's are open to you. Should you wish to appeal a decision for any benefit.

The Department for Work & Pensions (DWP) have a information leaflet & form (GL24 DWP) that is available from the Jobcentre website.

For ease of access. You will also find this doument. In .pdf format. In the Documents section of the main website.

Today is Budget Day. It's very much the lead story on all UK based news channels.

You can get a copy of the full Budget Report (222 pages as a .pdf) from the BBC website by clicking here.

This will open a new page or attempt to download the document to your computer.

There is some information within this document relating to the introduction of the Employment & Support Allowance (EAS) that is replacing Incapacity Benefit, Income Support & Jobseekers Allowance in October 2008.

Most notable from section 4.5 page 59,

"To ensure this increased work focus benefits current as well as future claimants,
from April 2010 all incapacity benefits claimants who started their claim before October
2008 will be required to take the Work Capability Assessment."

At the moment if you are subject to an " exemption due to "that he/she is in receipt of the highest rate care component of disability living allowance"..". With regard to an Incapacity Benefit Claim. Click here for a previous post on IB. It is not clear if this will continue when the EAS is introduced.

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."

I have decided to highlight a comment to a previous post on this.

"Anonymous said...

Can someone give advice about medical examinations under the DLA review.

Some of what I read seems to suggest that if you are receiving the higher rate of DLA (originally granted under Special Rules) then you do not have to undertake a medical.
Can anybody clarify this situation please?"

See the guidance on the Governments Directgov website

Of particular note is,

"Medical examinations when you're already getting DLA

Receiving the right amount of benefit - 'Right Payment Programme'

If you're already receiving Disability Living Allowance, you may be asked to attend a medical examination as part of the Right Payment Programme.
Under the Right Payment Rrogramme, any Disability Living Allowance award may be reviewed to make sure the person is receiving the right amount of benefit.

I found this today. It is an Early Day Motion, number 637. You can find it by clicking here to see if your MP has signed it. If not, please write to them.

"EDM 637

You may be interested in the content of this debate. Held in the House of Lords on 3rd April 2008. Click here for the debate.

As indicated in the debate. Lord Fowler is a trustee of the Terrence Higgins Trust & sits on the All-Party Parliamentary Group on AIDS.

I've had some correspondence with the All Party Group but await feedback on our issues. 

Today, I wrote to several members of the House of Lords that took part in this debate.

 You may be interested in the following site's for detail about the Employment & Support Allowance Rates.

"Government Goes Against Spirit Of Parliamentary Promise To Disabled People, UK" from Medical News Today.

"New rates “will force more into poverty”" from Disability Now.

Also the Members forum on Benefits & Work has some good information on this.

Information is now available on the DirectGov website on the position of cliaming Disabled benefits whilst residing in the European Econmic Area & Switzerland.

This follows a statement in the House of Commons by Ann McGuire MP, Parliamentary Under-Secretary, Department for Work & Pensions. She is the Minister for the Disabled. 

Thanks to K, who sent this information to me.

If you need legal advice take a look at http://www.clsdirect.org.uk/

They offer free, confidential and independent legal advice for residents of England & Wales.

Link added to Debt & Legal advice section.

If your DLA personal care is reduced from "higher rate".  There are implications for other benefits you receive. Many carry disability components that you may loose.  You also loose your exemption to having your Incapacity Benefit reviewed and become eligible for the Personal Capability Assessment. Information gathered as a result of any reassessment of Incapacity Benefit is shared with and may have an impact on your DLA. The information is shared.

With the introduction of the Employment & Support Allowance in October 2008.  Incapacity Benefit will be replaced. If you are down graded as described above. You will become eligible for reassessment for this benefit. Initially you will simply move across to this benefit. Then by April 2010 the government want to have reassessed all these claims that simply moved across.

Reducing DLA personal care from the "Higher rate" of personal care. Seems to be a mechanism to facilitate the re-assessment of those currently on Incapacity Benefit as the new system "beds in". These re-assessments will happen over time.  

The assessments under the Employment & Support Allowance are more focused on what you can do? rather than what you cannot do?.  Again any information gathered here may have an impact on any DLA award you have at the time.

 As you may have gathered from previous posts.  I have been greatly concerned that during the review process. If you list several specialist consultants that deal with other medical issues you have developed alongside or by virtue of your HIV, especially mental health issues. The DWP typically only approach your HIV Consultant. Where they will not wait for this report they may approach your GP.  Therefore only one aspect of your health is evidenced.

I was also concerned. Minded of the DWP guidance & that Mental Health issues were seemingly being ignored.

In my case. I have engaged in correspondence questioning the DBD551 I submitted. Specifically how or why a decision could be reached without medical reports covering ALL my health issues from ALL my consultants.

The response states;

"..... decisions are made based on a persons mobility and care needs and not the disability itself"

so why require any medical report if it is not required to reach a judgement on entitlement?

it then continues;

This is a subject that we will come back to from time to time as we challenge the existing situation with regard to giving consent to the Department for Work & Pensions (DWP) with respect to signing the consent component of your forms.  If you tick the box refusing this consent it seems, for the time being, that the DWP will simply see this as an end to your process and this may stop your benefit. There are issues around this which we are raising.

However the primary relationship here on this subject is the personal relationship between you and any doctor you see.  Your doctor has a duty, as described by the General Medical Council & other representative bodies, to let you know and discuss any report they write on you to a 3rd party.

The DWP when they request a report tell your doctor they have your consent and you don't need to see the report.  We also know they advise GP's not to discuss the report with you the patient before it is sent.

In order for you to have control and absolutely ensure your rights to see and discuss any medical report on you requested by a 3rd Party. I have added a sample letter to the Useful Documents section.

Hope everyone had a good Bank Holiday weekend.

http://www.tcell.org.uk is up and running with details of the next general meeting.

Currently engaged in securing some "pro bono" legal assistance to clarify some points in law which may apply to certain DLA claimants. Will report back when I have more information.

One of the "fronts" on which we have been campaigning is he Right Payment Program. It is one of many campaigns we are running concerning Disability Living Allowance as it effects us and all disabled people. Our main issue is HIV people and Disability Living Allowance whether you are a new claim, subject to review by virtue of the "Special Rules Review" as well as any implication the Right Payment Program has.

10 Downing Street have responded to the DLA Review petition many of us signed. You can find the original text at http://www.pm.gov.uk/output/Page15690.asp

 From http://www.theyworkforyou.com. A written answer from Dawn Primarolo Minister of State (Public Health) on the incidence of HIV/AIDS in the UK.

Surveillance for AIDS started in 1982 and for HIV in 1984.

Number of cases in the last 30 Years.

HIV      93,231

AIDS    23,596

Number of cases in the last 12 months.

HIV       6,840

AIDS        750

Thank you to the person who emailed me this information.  Unfortunately their decision left them with a loss of both DLA & Incapacity Benefit.

From the http://www.theyworkforyou.com website, you will note the question to the Minister of State for Public Health is asked about her involvement with the DWP.

"

Oral Answers to Questions — Health

HIV Infection

All Commons debates on 17 Jun 2008

2:30 pm 

I would draw your attention to this post in the Forums on the Fear of Prosecution.

Very relevant. Legally I would draw attention to the requirement in law to notify the DWP of changes to circumstances.