The Disability Living Allowance
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What is it?
A non-means tested non-taxable, Social Security Allowance paid to people who need help with their daily or nightly care needs or have mobility problems. It is paid in two parts, the care component and mobility component, you can have one on its own or both together. You should have needed the help or had mobility problems normally for three months before you claim and they should be expected to last at least another six months. It can be claimed for the first time by anyone under 65, this includes children.   
For people over 65 needing help for the first time the equivalent benefit is Attendance Allowance.   Any award of D.L.A increases the amount you or your family could receive in Income Support, Jobseekers, Housing and Council Tax Benefit, and Health Benefits. 
Certain levels also acts as a passport to Disabled Persons Tax Credit, Various Grants, Invalid Care Allowance, Blue Badge, Car Tax Exemption, Driving Licence at age sixteen, etc, etc. You should have a full benefit check done if you or any of your family are awarded any level of D.L.A.
This benefit check is designed to ensure that you are receiving the appropriate benefits.

Important note:  This benefit  check is paid for your care and mobility needs. You can get the benefit even if you live alone with no help. As long as any help or supervision is reasonably required you should still qualify for D.L.A.

This information has been supplied by the Welfare for Rights website which can be found at www.welfarerights.co.uk  it has masses of information for all sorts of questions, with FAQ's on the homepage, plus many more internal links within the site. It covers many aspect of the rights you may be entitled to.

Check your benefits
Recent changes in legislation may mean that people who are entitled to state benefits are not fully aware of what is available. This applies particularly to the Incapacity Benefit which underwent recent changes.   
You can find out more at this website www.iawelfare.org.uk  

This Benefit has been around for years, and it has caused a lot of controversy.  Most sufferers of IBD have not claimed or attempted to claim this benefit, why not?  you may ask, quite simply because all the forms that require filling in, interrogations some have to go through, and in some cases Tribunal Hearings are enough to scare most away. 

Some people with IBD through no fault of their own have to give up their work, and perhaps believed that this allowance was only for people with severe disabilities, but now that their livelihood has been taken from them, decide that they should quite rightly claim D.L.A.

Firstly the forms must be filled in and the correct way to do this is by enlisting the advice of your GP, if not the Benefits Agency will send a simple tick list form to your GP, who may inadvertently tick the wrong boxes without you there to say exactly how you are feeling.   The Agency wants to know how you are feeling at your worst.    If your claim is rejected contact the Local Authority's Welfare Rights Department, a representative from Welfare Rights should then arrange to visit you.   If they state that you don't look ill enough to be claiming this allowance, request an Appeals Form, and be prepared for more 'grilling' from the Welfare Rights rep, who will then type their report to be submitted to the Benefits Agency. 

The NACC (National Association of Crohns & Colitis)  give excellent advice and helpful tips when trying to claim the D.L.A benefit. They are running a project on disability benefits and have produced three documents as an information guide for people with IBD.

1.    The first guide is called 'Overview of Welfare Benefits' a guide to what state benefits might be relevant to a person with IBD .
2.    The second guide 'Claiming Disability Allowance'  (D.L.A).  This document is comprehensive and aims to help people fill out an application form for D.L.A. The guide also contains a sheet for health professionals and an additional guide on making appeals.   
3.    The third guide is for children .  Claiming DLA for Children.   A guide on claiming D.L.A for children, similar in structure to the adult guide above.

One copy per person can be obtained from the NACC office, their address is 4 Beaumont House, Sutton Road, St. Albans, Herts, AL1 5HH.
If more than one copy is required you must phone and request them, the number is 01727- 844296.
You can send them an e-mail to request a copy, giving your UK postal address.
More information can be found on their website at www.nacc.org.uk

The best thing to do is to obtain a copy of the NACC booklet for claiming disability benefit.  
The guide is written specifically for people with Crohn's.   You can phone the D.L.A Benefit Support Line (0845 130 4455 on Tuesday evenings, 6.30 pm - 9.00 pm). This service started in January 2001 and is operated by a small number of NACC volunteers specially selected and trained. The aim of the service is to help people with IBD talk through any practical questions relating to D.L.A. 
It is supportive in tone, and general information is given about claims for D.L.A, but not individual advice. 

Specific advice on making a claim should be sought through a local Welfare Rights Agency or Citizens' Advice Bureau.
Any young students should also contact their local education authority and ask about the Disabled Student's Allowance. 

Has anyone tried to claim this benefit? and come up against bureaucracy at its worst. 
There must be many people who would be interested in finding out the best way to achieve this aim, after all these benefits have been put in place to help these unfortunate people.    
Not humiliating them as quite a few people who have tried to claim this benefit ended up feeling.     
Please post your own experiences relating to this subject, it will make interesting reading.
See some narratives below. 

JL, States that the system should be changed- why?  here's the reason.
The benefits system's attitude to people with IBD sucks. They seem to think that we are lying, 3 members of my family have IBD of which two are my children. The eldest child receives D.L.A, but it was not easy to achieve this. I first applied for Attendance Allowance when my child was under  5, the claim was refused.     
Then D.L.A was introduced as a new benefit, so I applied again on the advice of my health visitor, 10 months passed before the cheque was backdated for the middle rate.  
I have since applied for Motability, which has been refused. The youngest child has only recently been diagnosed, I haven't applied for D.L.A yet as my youngest child has not been to severely affected at the moment and after all the rigmarole we had to endure before, I'm not sure if I will.

The system does not seem recognise IBD as a significant health problem at all, yet almost anything else is from asthma to any type of sore back being better catered for by the DSS. It makes me so angry that the Benefits Agency leave IBD sufferers with so little dignity but still assume they are work- shy or scroungers.   
My husband worked for over 10 years whilst suffering IBD symptoms, it eventually got so bad he has not been able to work for 7 years now. He was refused D.L.A and we found the form so humiliating that he couldn't face appealing. He then had to endure a work test, which is aimed at people with physical problems such as arthritis or breathing problems.  
Simple changes in the system would end a lot of misery for sufferers and wouldn't cheat the system.

LB,  Categorically declares I am not work-shy. I was diagnosed with Crohns over a year ago, although the problems associated with IBD have been a part of my life much longer. I had to drop out of A-level studies last year as I could no longer maintain the hours of attendance required, I was devastated, my life's ambitions seemed to be falling apart around me.
After four month's rest in hospital, I found a part-time job where I work 19 hours per week. This suits me because of my low energy levels and constant pain. As I'm only 17 and employed as a trainee, my pay is very low, so low I find it hard to pay for all my medication.  

I recently applied for D.L.A but was turned down for not needing constant attention both day and night.   
Yet I answered all their other quite pitiful questions fully. I agree with the views most people hold relating to the DSS and the Benefit Agency, you must be nearly at death's door to gain any monetary help.

TG,  Complains about the disgraceful treatment received from the DSS as shocking. I will shortly be applying again for the D.L.A, with I suspect little hope of receiving it. As others testify there seems to be an assumption by the DSS that living with IBD is not really that much to bear.
I was diagnosed with Crohn's in 1968 whilst still at university. Over the years I've had to have radical surgery, and in 1985 a colostomy due to life-threatening problems, I now also have a permanent ileostomy.

IBD can have a major impact on the sufferer's career plans, employment prospects, family relationships, social life and above all, morale. I seriously question the credentials of the adjudicating officers who decide whether or not one gets D.L.A. As far as the D.L.A and the DSS 
are concerned, IBD sufferers are certainly the 'poor relations'. I have little faith in an appeals process associated with a system which at the end of the day, cannot make fair decisions in the first place.

IT, has learned through trial and error.  I was diagnosed with UC in 1994, after two years of difficulties.   
Despite being forced to give up work in 1996 I felt that D.L.A was for people who were more severely disabled than I was. However, following NACC's campaign, I decided to have a go at claiming the Allowance.  I was totally unprepared for the complexity of the forms, I tried my best to complete them, trying to fit my answers into the small space allocated, rather than using a fresh page, I photocopied the forms and sent them off.

My next mistake was not getting professional help whilst filling out these forms, then another blunder, I failed to discuss the procedure with my GP, and alas within 2 weeks my claim was rejected.  I contacted the Welfare Right's Department and quickly received a visit from one of their reps, again my claim was rejected, why? because I didn't look ill enough apparently. An Appeals Form and another meeting was arranged so that a proper interview could be organised, to record how badly my daily life was affected by chronic IBD.

I endured three hours of grilling during this second meeting, sheer hell! as I wasn't feeling very well. 
I set about collecting written evidence of the effects of the disease on my life. I submitted a five-day diary of my symptoms when I was at my worst. I explained all my symptoms and the effects they had on my daily life to the Benefits Agency. Fortunately I was able to go back 5 years with my hospital records, this showed how my life had been affected by severe to moderate flare-ups, also showing the short time I had spent in reasonable good health, my hospital consultant sent a letter to the Benefits Agency as additional back-up to my health records.

And guess what? yes after all these months of collating my evidence, I was again rejected. The battleground was set, I requested a Tribunal Hearing. Many months later (18 months to be precise) a date was set, the three members of the tribunal reached a decision, I was awarded the middle rate of care, backdated to the date of my original claim. The award is for three years. However, after learning from my mistakes I will be ready for those civil servants in 2002.

S & R, had this to say about their struggle to get the disability benefit. My daughter gets the higher rate of living allowance, and the lower rate of mobility allowance.   I also claim carer's allowance for her, we had a real struggle to get these benefits for her.   We were turned down twice and eventually went to an appeal.   We found out when we received the appeal papers that her Pediatrician had said she was capable of looking after her stoma herself.  At the time she didn't even have a stoma!! he was obviously thinking of another child.  The appeal panel told us they had not realised from the claims form just how much we had to do for our daughter.   When you fill in the form remember everything from extra toilet cleaning, (and extra water charges if applicable) to soiled clothing ect. 
It soon mounts up, all the everyday items needed, to all the extra things needing done.  
It's not just the physical stress, its also the emotional stress too, but they won't count that when they are calculating what rate you may be likely to get, if your lucky. I wish they made it easier for ordinary people with sick children like us, to get what we are justifiably entitled to.  

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[With thanks for information provided from the Welfare Organisation and NACC]