Knowing what benefits you are entitled to when you have Asperger’s
This article comes to us today from Robert Laing.
As a person diagnosed with / in the process of being diagnosed with Asperger’s, there are certain allowances which you may qualify for [specifically as it applies to UK benefits, but many other countries’ governments have similar allowances, too — see below for some info on the US]. This article will outline these allowances, what you have to do in order to be eligible for them, what you have to do in order to claim them and, lastly, what difference having these allowances will make to your life. Let us now take our collective first step and look at what allowances are out there.
The first question you need to ask yourself is “Am I claiming everything I am entitled to?”. It is a tough question, but the real key to success If you do not feel comfortable examining this yourself, get a parent or a carer or a close friend in whose confidence you can trust to sit down and go through things thoroughly with you.
The main allowance in the UK is Disability Living Allowance. According to information on the www.autism.org.uk website, this is still the main allowance for those people who fall into the ‘working age’ category (16-65). It is slowly being phased out and replaced with a new allowance known as PIP – Personal Independence Payment. www.autism.org.uk currently states that:
“Disability Living Allowance (DLA) has been the benefit for working age people (which means people aged 16-65), but this is gradually being abolished and replaced with Personal Independence Payment (PIP). In England, Wales and Scotland, all new claims for a working-age disability benefit must now be claims for PIP. If you are already getting DLA, you will be moved off DLA between 2013-2017. In Northern Ireland, PIP has not yet been introduced and new claims for DLA can still be made. If you are getting DLA and want to find out how your claim will be ended, please see our information about the abolition of adult DLA” (www.autism.org.uk as at 21/12/2014).
This site also provides an extremely useful section with help on completing the DLA/PIP (Disability Living Allowance / Personal Independence Payment) claim form. These tips can be found in full on www.autism.org.uk but essentially; they boil down to the following:
- Keep a claim file — copies of everything you send, all documents you include with your form. Keep a diary with dates on which you have sent everything off and any/all telephone conversations you have with the Department Of Work and Pensions regarding your claim.
- Be as honest as possible — explain your difficulties simply and in as much detail as you possibly can. This will be both tiring and emotional. However, it will all be to your benefit in the long run. No one knows you as well as you know yourself. Once you have written all you can, it may be a good idea to get your parents or carer (or even a close and trusted friend) to read through what you have written and offer some independent advice.
- Include supporting diagnostic evidence — your GP can provide. Again, in approaching your GP, it is important to be as open and honest as possible about what you need and why you need it.
This website also provides a wealth of useful information for carers and relatives and parents concerning how they can support someone putting in such an application. It should be your first and main port of call.
www.autism.org.uk also provides a very useful step-by-step guide and explanation to the related Carer’s Allowance, which may be open to those who care for an Aspie at least 35 hours per week. This allowance, while taxable, is NOT means-tested. It is currently £61.35 per week and, again, full and further details can be found on the website.
Further advice along these lines can be found on the H.M. Revenue & Customs website (www.hmrc.gov.uk). Another useful resource, for those living in the Wiltshire and South West England region, is the DASH Swindon website and drop-in centre. Contact details for this most useful resource can be found at www.swindonadvocacy.org.uk. Those wishing to contact the centre by telephone can do so on either 01793 542 575 or 01793 542 266. Lastly, those who wish to send the centre an email can do so at the following email address: [email protected]
The above tips are equally applicable to residents of the USA who are considering putting in a claim for welfare allowances to which they may be entitled. The main allowances applicable to those with Asperger Syndrome in the US would seem to be Social Security Insurance (SSI) and Social Security Disability Insurance and a very useful resource for both information and guidance here is the AANE Asperger/Autism website (http://www.aane.org/asperger_resources/articles/adults/social_security_asperger.html) — a US-based site which covers similar ground to the Autism.org.uk website in the UK.
AANE openly and honestly admits that Asperger Syndrome is “a comparatively new diagnostic category in the US” (http://www.aane.org as at 26/12/2014). As such, it has provided, through the above link, a very thorough and easy-to-follow guide to the SSI/SSDI application process. This should be followed to the letter.
Let us now take a slight breather and consider some questions we may wish to / may have to ask ourselves at this stage. These may include, “Have I understood what is required of me? Do I have all the preparatory evidence from my doctor / my carer / my parents / my social worker etc. before I make a claim?”. Secondly, moving on slightly, if your claim has been confirmed as successful, do you know when your award is due to start? Do you know when your first review date is due to occur?
Once you have considered all those, another secondary source of support and advice are websites such as Facebook (www.facebook.com) and Twitter (www.twitter.com). Both are full of support groups for Aspies and will be full of personal experience stories from which one can draw support. It is worthwhile bearing in mind, though, that (in the main) they are run not by qualified experts but by, and for, Aspies themselves. Therefore, their advice and opinions may not always be as unbiased as one wishes (or needs) for them to be.
This, then, leads us on to other official (i.e., regulated and with legal guidelines) sources of advice. The first of these, which I consulted for this article, is H.M. Revenue and Customs’ benefits calculator (https://www.gov.uk/benefits-calculator). This is a simple tool, which will leave you fully informed about allowances you can expect to receive. Another similarly useful and focused tool can be found on the www.entitledto.co.uk website (www.entitledto.co.uk/benefits-calculator/entitlementcalculator.aspx?e2dwp=y).
So, to recap, are you claiming everything you are entitled to? If not, read again what you have read thus far and ask yourself, “Am I ready to take this step?”. At the risk of sounding patronising, everyone (or nearly everyone) will have feelings of doubt, anxiety and fear at the start. This is normal and even good. It means you are being entirely open and honest with yourself.
Let doubt become curiosity and drive you on. The key here is not to see claiming an allowance as an admission of failure, but rather as a chance for you to make your Asperger’s Syndrome work for you; keep things in perspective and don’t start spending the money before you have been awarded it. Make notes concerning the most responsible ways the money might be spent. College, university, a deposit (slowly) for a new home. All of these are building blocks towards an independent life. It is a cliché to say that money can’t buy happiness. However, if used wisely, it is a very good gateway to a fuller and more emotionally and professionally satisfying life. And again, we come to a summary point.
What do you need advice on?
You need advice on how your age and disability status will affect what you are entitled to claim for.
What other factors come into play?
Put simply, whether you are in work or not, what type of work you are involved in, the number of hours you work and the net income this brings you.
What are the main types of allowances involved here?
These are: Universal Credit, Disability Living Allowance, Income Support, Personal Independence Payment (PIP).
The Focus On Disability website (www.focsuondisability.org.uk and, in particular, the page www.focusondisability.org.uk/brates-1.html) is a particularly useful tool here, giving as it does, accurate figures for each individual allowance and also very valuable information on how The Benefits Cap from April 2013 may affect you. Eligibility criteria for each allowance is also supplied.
Right, that’s the practical side of things dealt with. We need now to look at the emotional side. If you have a support network around you, then all well and good. Use it. Parents, siblings, friends, support workers — ll can offer you valuable input into your application. Go through the sources mentioned here yourself. Go through them again with any (or even all) of these people.
Self-sufficiency is a great unsung strength of Asperger’s Syndrome. However, we all need the support and counsel of others from time to time.
A common, if understandable, trap of the Aspie is to view asking questions as being a sign of stupidity; to view asking for help as a sign of weakness. Neither is true (in fact, the very opposite is true because asking for help leads to the acquisition of knowledge, which is personally empowering). Do your own research. Note down questions and concerns as and when they occur. Go through these at the end yourself. See what answers you can find in the information you have. Score off answers as you get them. At the end, take all your unanswered questions to someone you can trust. This will be a great confidence-building exercise for you. Unfortunately, many people with all manner of disabilities tend to fall into the trap of coming across as dependent and always being in need of help. But by doing things this way, you will come across as a mature, organised and thoughtful individual, capable of thinking things through from all sides and of recognising where there are gaps in your own knowledge that you need to address.
Also, if you are not currently in work, this will be a good dry run in doing research and preparing for a job interview. You will have facts. You will have figures. You will have processed and organised both. And each and every one of these activities underage in will be your own personal achievements.
I speak very personally when I say that I have been through all of this. Yes, it is frightening. Yes, you will have days when you want to hide under the duvet and try and make all your worries, problems, concerns and fears go away. But the key here is to use the two main gifts of the Aspie:
- A slow, measured response — gathering facts takes time. People take time to get back to you. Use this as a chance to build up a diary of what you have done, when you have done it. Note to whom you have spoken, when and what about. Take note also of when they say they will get back to you. Chase them up if they don’t. This will strengthen your organisation skills and also build up your own self-confidence.
- Methodical approach — Aspies are great creatures of habit. Use the experience of applying for (and, here’s hoping, being granted) allowances from the Department of Works and Pensions to strengthen and develop new and good habits of record-keeping, contact-building, diplomacy and networking. This is what I did, and then, when I began to go for job interviews, I was far more confident and organised as I was able to transfer these skills over to company and market research, which gave me a real advantage over many other job interviewees.
Where once I was nervous and immature and naive, I am now curious, inquisitive, and professional and considered. All because I took that first step. I did my homework and applied. This, then, is where I need to stop and you, dear reader, need to start. Good luck in your applications and future professional endeavours.
ROBERT LAING BIOGRAPHY
Robert discovered he had Asperger’s at the age of 20, quite by chance. His mother had been given Tony Attwood’s first book and recognized within it characteristics and situations similar to these encountered by both Robert and herself as a parent.
Robert has felt moved to write about Asperger’s – both his own experience with it and also the help that is available out there to others – now, because there are more people both being born with it and also being diagnosed with it retrospectively, in later life. He wishes to offer help and advice to others, just as others have done for him.
Aside from Asperger’s Syndrome, Robert also writes for a variety of website and print publications on subjects such as music, books and the local area in which he lives.
Robert has done a considerable amount of research into the average Aspie diet. He is sure that both parent and Aspie alike will find something to relate to in both this and future articles and welcomes feedback from both. He can be contacted for this and other writing matters at [email protected]