Employment And Support Allowance (ESA)

1. 
   
   The purpose of this note is to help people suffering from Asperger’s Syndrome or High Functioning Autism in their application for Employment Support Allowance (ESA).
2. 
   
   Our experience is at this end of the Autistic Spectrum but this note may well be relevant to those at any point on the Autistic Spectrum.
   1. 
      
      We are Peter and Mark. One of us suffers from Aspergers Syndrome and the other from Retired Solicitor Syndrome. There is no cure for either condition, but both can be lived with. We have no intention of saying which of us is which.
   2. 
      
      One of us applied for ESA and was refused by the Decision Maker. We then together lodged and prepared an appeal. After a very steep learning curve this was eventually successful. We hope that by learning from our experience you may avoid making the mistakes that we did.
   3. 
      
      It is hard to over-emphasise how helpful it is for the applicant in the process to have an NT to assist in completing the forms, to accompany the applicant to appointments, and generally to be a hand-holder. If you can’t find anyone else, a retired lawyer is better than no one at all.
3. 
   
   Two accounts of the process follow one written by the Aspie and the other by the retired lawyer. It should self evident which is which.

Introduction

I have recently been granted full 'Employment and Support Allowance' (ESA). Wahey... I'm officially disabled. Erm...

I have Asperger's Syndrome.

I first applied for ESA in January of 2009. It took just over a year, two stages of appeal and two tribunals to reach a satisfactory outcome.

So, a quick moan... It frustrates and angers me that people who need help and support are forced to fight for it, when in many cases they are the least able to ask, let alone fight. I am fortunate in having great support from my family, psychologist and doctor and being in many ways very able myself. I find conflict with other people extremely draining and dislike having to fight my corner. I am far happier being myself and waiting for my contribution and/or needs to be recognised and catered for. Unfortunately that isn't the way the world, or the benefits system works.

The change from Disability Living Allowance to Employment and Support Allowance is part of the government's efforts to save money and massage their statistics. The government feels that there are too many people claiming disability benefits for too long.

Clearly there are some people who abuse the benefits system. It makes perfect sense to make it more difficult for people to abuse the benefits system. But it is difficult to make it harder for the cheats while not raising the bar for those who are in genuine need.

I find myself torn over my own status. I don't feel disabled. My body functions very well and my I.Q. is above average. Disabilities are things that other people have... not me.

It is just this one thing... I have trouble communicating with other people. People exhaust me, the effort to present myself as normal exhausts me. And social interaction is most of what normal people do.

There is a pattern to my life. I collect enough energy to take the world on, on its own terms. I get a job and earn a wage. After a while (as much as six months if I'm lucky) I can't take any more, I quit the job and I sponge off proper tax payers while I recover. I reckon that, roughly, it takes me two years of recovery time for each six months of proper work. The cost of this is not just the maintenance while I get myself back on my feet, but also the less tangible cost of the loss of my potential contribution to society during this time.

I don't want to live at other people's expense for the rest of my life. I want to support and be a part of the society that I live in. I feel that I have much to offer. But I can't do it on the same terms as most people. I need a little extra help, a little extra consideration. Given these I feel I can pay back far more than the cost of a little extra allowance. On the other hand, given the choice of 'sink or swim', I shall sink, and still be a burden on society's wallet.

In other words... It is a false economy to save money by not helping those who need it (A stitch in time, saves nine). Likewise, it is a false modesty not to take help when you are struggling.

The Process

Apply to your local benefits agency for Employment and Support Allowance.

You will be awarded provisional allowance which is roughly equivalent to Job Seekers Allowance (with the same caveats on savings, income based vs contribution based and what have you).

You will be sent a form ESA50.

Fill this in and return it. You may need to provide a doctor's sick note with the form and at regular intervals while waiting for a decision.

You will be invited for a medical exam and/or interview.

Attend it.

You will be given a decision and reasoning in due course. This should be about three months after your initial application.

If you are awarded the Allowance everything is hunky dory. You will receive a full allowance which is slightly higher than the provisional allowance (and varies slightly on your particular circumstances).

If you are denied the allowance your provisional allowance will be stopped (although you don't have to repay what you have received to date).

If you disagree with the decision you may appeal against it. For the duration of your appeal your provisional allowance will be re-instated. You don't have to live on nothing during the appeal.

The first level of appeal is to the Department of Works and Pensions (DWP) who administer the ESA. Since they made the decision in the first place it is unlikely that this appeal will change anything unless you can show that they made a factual error.

The next level of appeal is to the independent tribunal. You will be sent an appeal form for this if your appeal to the DWP failed.

The Independent Tribunal will invite you along for a hearing where you can make your presentation and they will either uphold or overturn the DWP decision.

If you have appealed and won the case, you will go to the higher rate of allowance and have that higher rate back dated to the time of the original DWP decision.

Improving your chances of a favourable decision

In an ideal world, the decision would be made quickly and favourably with the minimum of intervention on your part.

In this world...

I hate filling in forms. I particularly dislike those open areas of the form which ask for “any other information that might be relevant”.

I don't know what you don't know. It turned out that I should have put an entire primer on Asperger's Syndrome in the little box. While the government has passed the autism act and the NAS was involved in the construction of the ESA50 form (apparently it takes account of Autism more than the equivalent DLA (Disability Living Allowance) form did – which presumably means it has gone from nothing to a tiny weeny little fraction of autistic/mental disabilities taken into account) the actual people currently administering the system have not got the faintest clue about Asperger's Syndrome. This very much includes the doctor who will interview you.

To be fair, there are a lot of disabilities, and the DWP can't be a specialist in all of them. The doctor I saw was a medical doctor, not a psychologist and obviously didn't have the first clue about Asperger's – he was simply following a general checklist.

If you bear in mind that my local Primary Care Trust psychologists don't understand Asperger's Syndrome then you can be certain that the DWP won't have more ingrained knowledge. Hopefully this will improve in time.

However, right now when you are applying for ESA you should assume ignorance and stupidity on the behalf of everyone on the other end of a form or an interview.

This isn't to disparage the DWP. This is to get you in the right frame of mind. You cannot trust that they will come to you in trying to understand your condition. You will have to make an effort to communicate. Yes – the one thing most difficult to do by virtue of being an Aspie – communicating with NTs – is the one thing you have to do to persuade them that you have difficulty with... communicating. (Joseph Heller... Catch 22).

The first thing to work on is form ESA 50. You will receive this shortly after applying for ESA. I know you already hate forms, I know that pointing out the importance of getting this form right adds pressure, and you really don't need more pressure. I know you'd love to just tick the boxes and get rid of this form (that's what I did). DON'T.

An official diagnosis of Asperger's Syndrome would be helpful (but not essential) at this point. A letter from your doctor would also be useful. Be aware (I wasn't and neither was my doctor) that any Sick Notes from your doctor that you send are counted as your doctor's considered opinion (if you have seen a sick note you will know that there is literally only room for a couple of words...). A letter from a psychologist would be even better (good luck with that – I've been on a waiting list for nine months now – give serious consideration to a private psychologist or seek out one of the Asperger specialists and have your G.P. Refer you).

None of the above is essential (excepting a doctor's Sick Note), but each piece adds weight to your application.

Then we come to filling in the form... Do whatever it takes to spend a lot of time on this form. If you can, have someone help you fill in the form (I know you aren't stupid – but you need another perspective – you need to tell people who don't know anything about you what your life is like – another person can help with that perspective).

I strongly advise getting hold of a copy of ESA 214. ESA 214 is the guidance for interpretation of ESA 50. It will help you to think about what each of the questions is really asking. I spent many hours writing a response based on ESA214 that was entirely different in nature and depth to my responses to ESA 50 – but only after my initial application failed and my first Tribunal hearing was adjourned).

In any case, try to think around the questions. For example, one question asks whether I have trouble performing simple tasks like setting an alarm clock... Well no, I can set an alarm clock. Easy. No problem. So that was my response. But... Having a chat... most people find chatting to be a simple task... I don't... If I consider 'chatting' as the example simple task my answer is utterly different.

I can't tell you what to answer for ESA50 – but this is the main place for you to communicate your life. This is not the place to be modest, to not make a fuss, to sacrifice yourself for a quiet life, to put on a brave face.

Another problem I had filling in this form is that I couldn't easily judge my life in comparison to others. I've adjusted my life to manage. I know I live differently to others but I'm not always aware of why. Can I go to the shops or use public transport? Yes, I can. But only because I have no choice – I never do it for fun or indeed any time except where the alternative is to get into trouble or starve.

Another person's perspective would be really helpful. Some introspection on why you do things a little differently to other people will pay dividends here.

So you fill in ESA 50 and get invited for an interview/medical...

Again, I strongly recommend taking somebody with you. You will be talking to a doctor (not a psychologist) who has little or no understanding of Asperger's Syndrome. He will have a checklist in front of him and left to his own devices he will do nothing more than fill in this checklist (which bears a considerable similarity to ESA50). This checklist wasn't made with a view to diagnosing or understanding Asperger's Syndrome – it is entirely generic, it covers all disabilities. You will need to be forceful in getting him to pay attention to you as an individual and to listen to what your life is like – again, this isn't the place to be modest or to worry about other people's feelings.

I've learnt how to appear normal. I was taught to take off my coat when talking to people, how to sit, how to simulate eye contact, not to fidget/rock or display other nervous indicators. So... it was noted that I didn't rock or display other indicators (had the doctor shaken my hand at any point he would have come away with a sodden mitt that indicated my tension – but he didn't so...)

The lesson here is:

1. 
   
   Be as non-autistic as possible and communicate as well and clearly as you can what your life is like – don't wait to be asked – because you won't be asked.
2. 
   
   Be as autistic as possible so that the doctor can see that you are autistic - (I can't just switch my coping behaviour on and off like that – I'm not even clear which bits are coping behaviours – nevertheless). Your appearance will have a dis-proportionate influence on the doctors decision. I'm intelligent and I've learned and been taught well, I can present myself well and come across as relatively normal – something that is common among Aspies – but will work against you here.

A supporter who can help you make your points, who can help you manage the communication, who can prompt you to elaborate will be invaluable.

Conclusion

I've said nothing specific about the Tribunal process; the preparation and interview will benefit from the same approach as I've outlined for form ESA 50 and the interview.

Hopefully this will give you some pointers that will reduce the chance that you ever have to appeal.

I still think that the process is weighted against Aspies. Physically disabled people can at least point and say look – this is my disability. Aspies generally have difficulty with the full range of communication, yet have to communicate more in order to demonstrate their disability.

A comment on disability... I am less talented at non-verbal communication that the average person. I'm also far better than the average person at a number of things that interest me. There is no doubt that AS has influenced the person I am – and I'm extremely proud of who I am. I have a disability. But I am not a disabled person.

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1. 
   
   Employment and Support Allowance is the fancy name given to the allowance which has replaced the much more straightforwardly named Incapacity Benefit and Income Support, for new claims since 27 October 2008.
2. 
   
   The first thing to realise is that your diagnosis of Autism or Aspergers Syndrome is not, of itself, of any importance in your application. The Healthcare Professional who assesses you has a strict tick-box list which he or she has to complete. (We will come to the list in a moment.) If the problems you have from your Autistic Spectrum Disorder (ASD) are sufficiently serious in one category, or serious enough in a number of categories, then you will be entitled to ESA. But if you don’t clock up the necessary 15 points then all the diagnoses in the world will not entitle you to ESA.
3. 
   
   It is therefore very important that you should relate your symptoms not to the way that you see them, or to the way that a doctor sees them, but to the way that the tick boxes see them.
4. 
   
   When you apply for ESA you will be given form ESA 50 to fill in. This is the Application Form and we will take a look at it in a moment. You will almost certainly be called to a medical assessment by a Healthcare Professional. who will have to hand form ESA214 which is the Work Capability Assessment form. This is this form which is the key to the whole process and it is essential you get yourself a copy of it before you even fill in the application form ESA 50. You can find ESA214 online at http://www.direct.gov.uk/prod_consum_dg/groups/dg_digitalassets/@dg/@en/@disabled/documents/digitalasset/dg_177366.pdf

(In case you find the terminology confusing, ESA214 refers to you as the ‘consumer’, though what exactly you are buying is unclear.)

Form ESA50 will be given to you but can be found at http://www.disabilityalliance.org/esa50.pdf

An extremely detailed training manual can be found at www.rightsnet.org.uk/pdfs/ESA_handbook_v1_Final.doc but it is heavy duty stuff, is over 200 pages long, and is probably more detailed than you will need

5. 
   
   Turning to ESA 50, the application form. It is important this is filled in correctly, i.e. to the best advantage. It may well be advisable to have a friend or advisor to help you with this, and this is true throughout the process.
   1. 
      
      Pages 1 to 7 are concerned with your personal details. If you want a friend to come with you to the medical assessment, then say so on Page 3. Assuming you have had a diagnosis of an Autistic Spectrum Disorder, this should be mentioned on page 4, with a brief description of where you fit on the spectrum. As already explained this will not, of itself, lead to being given ESA, but it sets the scene for the Health Care Professional who will interview you and the Decision Maker.
   2. 
      
      Pages 8 to 24 are concerned with 21 specific descriptors. As we will see later, you can be given 0, 6, 9 or 15 points on each descriptor. You have to score 15 in total to be given ESA.
   3. 
      
      Descriptors 1 to 11 (pages 8 to 18) refer to physical disabilities. These are probably less likely to apply to you than the ones which follow which relate to mental functions. But if you do have physical problems then you will need to bring them within one of the first 11 descriptors.
   4. 
      
      Descriptors 12 to 21 we will look at individually. At his stage you will need to have ESA214 to hand. It is not light bedtime reading, though it might be a specific for insomnia. There is no need to read the whole of it unless you’re a glutton for punishment. You can take it up at page 22 at the heading Descriptors and scores for each mental, cognitive and intellectual function assessment. The descriptors which the Health Care Professional will particularly expect to apply to ASD sufferers, will be 17, 20 and 21, but if you feel others apply, then refer to them. Quite possibly no. 19 will be relevant. Now to look at the descriptors individually:
      1. 
         
         12. Learning or comprehension in completion of tasks You will see that the descriptors (a) to (e) in ESA214 don’t really correspond with the questions in the application form. Note that you can only get 9 or 15 points if you actually have to be shown how to do a task and need to be reminded on subsequent occasions. If you can learn by being told verbally but you still need to be reminded, then 6 points is the maximum. If you think this section applies to you then it would probably be a good idea to fill in the spare box at the bottom of the page making reference to the specific descriptor in ESA214.
      2. 
         
         13. Awareness of hazards. Here the ‘Usually/Varies/Not very often format of ESA50 is closer to the descriptors in ESA214. Daily problems merit 15 points, problems the majority of the time merit 9 points and frequent problems merit 6 points. Not very often would merit no points. As well as the examples of hazards given other relevant matters may be road safety generally, electrical hazards and responsibility for children or pets.
      3. 
         
         14. Memory and concentration. Here the questions in ESA50 reflect the descriptors in ESA214 reasonably closely. The essential features of descriptors (a) – 12 points and (b) – 9 points are that either on a daily basis or for the majority of the time you have to have someone prompt you in person. A phone call or a check list are not enough. Frequent problems manageable with a check list merit 6 points.
      4. 
         
         15. Execution of tasks. The options in ESA50, which refer to frequency of the problem, have little to do with the descriptors in ESA214 which have to do with the extra and unusual length of time it takes to do a given task. This section is most likely to be relevant to people subject to Obsessive Compulsive Disorders or panic attacks. It is not to do with the length of time it takes to wind yourself up to starting the activity in the first place.
      5. 
         
         16. Initiating and sustaining personal action. The usually/not very often/it varies format in ESA50 is more or less relevant to the descriptors in ESA214; but note that this section only applies if you can’t initiate or sustain personal action at all, or are only able to do so when there is someone in person to give verbal instructions. If your ASD leads to depression leading to an inability to cope, this section might be relevant.
      6. 
         
         17. Coping with change. This section may well be relevant to people with ASD’s. Descriptors (a) – 15 points and (b) – 9 points both refer to inability to cope even with expected changes in routine, and vary only in relation to the severity of the problem. Descriptor (c) – 6 points refers to coping with unforeseen changes in routine. There is a suggestion that if you can attend the medical examination centre on your own then you would not qualify under this heading. The reason for this is not entirely clear unless it is thought that there is almost certain to be a change of plan in connection with the appointment!
      7. 
         
         18. Getting About. The descriptors in ESA214 for this section are concerned with the difficulty you have in going out on your own. All the question assume you would need to have someone to accompany you, and within that context the descriptors vary only in relation to the degree and frequency of the difficulty. It is more aimed at people suffering from agoraphobia, and does not relate to mere anxiety about going out.
      8. 
         
         19. Coping with social situations. The descriptors in ESA214 make it clear that the essential requirement to fall within this section is to suffer from ‘overwhelming fear or anxiety.’ The particular descriptors then range from ‘always’ to ‘frequently’ which determines the number of points. Ordinary common or garden anxiety, shyness or reticence is not enough to score under this section. There is also a suggestion that if you attend the medical examination on your own, then you may not be sufficiently anxious to score any points under this section.
      9. 
         
         20. Propriety of behaviour with other people. This quite long section is concerned with the effect your behaviour has on other people. It may be relevant to sufferers of an ASD, particularly descriptors (b), (d), and (f) all three of which relate to responses to ‘minor events.’ The descriptors range from moderately disproportionate reactions to minor events all the way up to aggressive, disinhibited (sic) or bizarre behaviour If you feel this section applies to you, then read ESA214 before completing the application form to make sure you get the ticks in the right boxes, which will possibly be the section which refers to ‘little things.’ Probably worth using the comments box provided as well
      10. 
          
          21. Dealing with other people. This section is quite likely to apply to those on the autistic spectrum. It might apply to you if you find it hard to ‘read’ what other people are really thinking or if you find it hard to understand why people react to you as they do. Descriptors (a), (c), and (e) relate to your lack of awareness in recognising the effect your behaviour has on other people, (and this can include such matters as personal hygiene); they vary in the degree of severity of the problem. The part of ESA50 which would apply is the question about your behaviour upsetting other people. Descriptors (b), (d) and (f) relate to the problems you have in understanding the verbal and especially non-verbal signals that people are giving; again they vary in their degree of severity. If you feel this section applies, study ESA214 carefully before filling in the application form. Using the comments box might also be sensible.
6. 
   
   Assistance in completing form and at interview.
   1. 
      
      If possible, it is a good idea to have assistance in completing the application form. A number of the questions require you to have an awareness of the impact of your behaviour on others. But it is in the nature of an ASD that you will likely have problems in exactly this area. If you are not aware of the problem, how can you relate it accurately on the form? So get assistance, if you can, from someone who, preferably, knows you well.
   2. 
      
      You are perfectly entitled to have someone accompany you to the Medical Examination Centre, and if you so wish and authorise, to be present during the examination. Don’t hesitate to have a companion if it makes you feel more at ease. Don’t try to record or video the interview. It will not be permitted. Notes may be taken, but it may be seen as an hostile act, and it really shouldn’t be necessary.
   3. 
      
      As you have seen there may be some issues where not being accompanied by another person could be seen as indicating you don’t have enough of a problem to score any points under that heading. But if you don’t have anyone to accompany you, it’s not the end of the world. Just make it clear what an effort attending has been for you.
7. 
   
   Appeals. If you have filled in the ESA50 to best advantage, and given the healthcare professional a full account of your problems, then the decision maker may well give you ESA at this stage. However, if you are not given ESA, and still think you should be entitled to it, all is not lost.
   1. 
      
      Firstly you can ask the Decision Maker to reconsider. This is unlikely to work unless you think there is additional information which the Decision Maker did not originally have, and which you can now provide,.
   2. 
      
      You can also appeal to an independent tribunal, and this would always be our recommended course of action. You must do this within one month of the date of the decision letter.
8. 
   
   Appeal Tribunals are intended to be far less intimidating than courts. Nevertheless you may well find that even more so than at the medical examination, you want to have someone with you at the hearing and to help you prepare for it.
   1. 
      
      Having to relate to other people is a particular problem for those on the autistic spectrum, and in the strange and possible tension-creating environment of a tribunal hearing, this may be especially true. The tribunal should be aware that it is in the nature of your problem that you are unlikely to be able to explain it as someone might who did not suffer from an ASD. The judge and the medical expert should therefore do all they can to set you at your ease, and basically you will only have to answer their questions. But despite all this
   2. 
      
      You may find it helpful to explain your problems in writing to the tribunal. You can prepare this document in your own time, and without being under pressure to ‘make a good impression’. Get it to the tribunal office at least 10 days before the hearing so the judge and medical expert can take in fully what you’re saying without being pressed for time.
   3. 
      
      Medical Report. It may be helpful to have a medical report containing your diagnosis of an ASD. However it is essential that the person preparing the report should be aware of the 21 descriptors and write the report is such a way as to ‘tick all the boxes’. This is likely to be quite a different way of presenting the report to the way they would otherwise have used. This may well mean getting a private report prepared and paying for it. You would need to find someone reasonably within your geographical area. There will be many well qualified people who could help, and the NAS may be able to help with a list. We happened to go to Vicky Bliss (http://www.btss.org.uk/) because she lived near where we live, and have no doubt that her report was most useful.
9. 
   
   And the best of luck to you!

© Peter and Mark March 2010