The campaign to protect disability living allowance – why you should support it?

If you have been on twitter recently, you will no doubt have seen the hashtag #spartacusreport.  Responsible Reform, as it’s also known, has been carried out by a team of sick and disabled campaigners who have used the Freedom of Information act to access information on welfare reform and to highlight serious flaws in the way the government has handled the consultation on disability living allowance (DLA).  You can read the report in full here but you may be wondering what DLA is and why there has been such a fierce response to the proposed governmental reforms.

What is DLA? 

Disability Living Allowance (DLA) is an allowance that is given to help those with the additional costs as a result of their disability.  It is not means tested but is paid at three differing rates (high, middle, low) depending on how someone’s disability affects them.  There are also two components to the allowance, mobility and care – someone either gets one or both components, again depending on how their disability affects them.  Furthermore, contrary to media reports about the ease of getting this allowance, a form of over 30 pages long has to be completed in order to be considered for DLA.  In addition, references have to be sought from professionals involved in the care of the person with the disability ie doctor, psychiatrist.  APPLYING FOR DLA IS NOT AN EASY PROCESS.  Not surprisingly the fraud rate is a very lowly 0.5% and yet the government want to reduce DLA by 20%.  This is a serious reduction with the likelihood that a huge number of people with genuine need will not be able to receive this vital form off support.

What DLA means for my family

Many people do not realise that living with a disability incurrs extra costs – from travel expenses to adaptations in the home  to accessing a social life - DLA is not a way of buying in luxuries as is often the picture painted by some newspapers.  For my family, my son’s DLA means we can buy the things that make his life more comfortable – a supportive mattress, special lighting, particular clothing, sensory items, specialist food.  These adaptations help us to manage his behaviour in ways that then enable him to access some of the things that his peers take for granted such as going to the swimming baths or visiting the library. 

Another dimension to getting DLA is that those who care for someone on the middle or higher rates of support, and who spend at least 35 hours a week caring, can apply for carers allowance.   However, at £55.55 a week this is hardly a generous allowance considering the number of hours of care someone has to do as well as the restrictions on employment and the effect it can have on other benefits. Nevertheless for me, this allowance has enabled me to concentrate on caring for my son.

However, with the threat that the DLA will be reduced by a fifth I am very fearful that my autistic son, at some point, will lose out.  As someone with a hidden disability that is misunderstood by many in our society, I am frightened that my son’s need for support will be dismissed in the future.  As I experienced for myself, the forms for DLA are mainly aimed at those with physical impairments and it becomes incredibly difficult to complete for those with hidden disabiilities and mental health conditions and whose conditions fluctuate from day to day.  For my son, some days may be quite good ones where he will be able to leave the house (with support) but even then there is a limit to what he can cope with.  Other days he cannot leave the home.  Then there are the days when he struggles within the home.  For my son, his disability means his social and communication difficulties, his anxiety disorder and his sensory difficulties make life challenging for him.   As many of you will know from this blog, my son is having a particularly difficult time at the moment and is struggling to leave the house and attend school.

With such difficulties in our family, I  am unable to properly work outside the home.  What work I can do is limited to a few sessional hours a week due to the amount of time I have to give to my son.  I can’t deny that it is hard being a carer at times though there has never been any question about having to give up work to care for my son.  However, carers allowance goes some way in  acknowledging my identity as a carer and the work I do looking after my son.  More importantly than that though, this allowance means I can concentrate on being my son’s carer which is the best thing for him at the moment.  I am the one most tuned into him and his disability, who can provide emotional and social support and who can advocate for him.  If my son was to lose his DLA and I was to lose my carers allowance, what quality of life would my family have if we were denied these essential forms of support?  At the very least we would have greater financial worries and increased marginalisation in a society that is already not understanding enough of autism.  

What does it mean for you?

Having outlined the importance of DLA to my family, you may wonder why it is important for you to champion the rights of the sick and disabled.  Its easy to think that disability and sickness happens to other people particularly if your life is not touched by these things.  As I have experienced any one of us can become sick or disabled at any time in our lives.  You can be born with a disability such as my son or you can acquire a disability through an accident or illness.  These things can happen suddenly and unexpectedly whether you are young or old.  So please take a few moments to try and imagine what it would be like if you or a loved one became ill or disabled and needed support.  How would you feel if support wasn’t there?  How would you feel if after years of contributing tax and NI that there was no financial help for you during your time of need?

So what can you do?

If you feel as passionate as I do that our sick and disabled pople should be looked after then there are several things you can do:

  • Read the Spartacus Report and share a link on twitter and facebook. 
  • Blog about it.
  • Tweet your stories as to why DLA helps you and your family – use the #spartacusstories hashtag to help get this trending.
  • Tweet “I support the #SpartacusReport” on twitter and facebook.
  • Add a twibbon to your twitter avatar –
  • Email your MP (you can find your MP by clicking here) and ask that they read the report and respond.

You might also want to read this post - a reader shares her MP’s response

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5 Responses to The campaign to protect disability living allowance – why you should support it?

  1. Pingback: Love Special Needs – The Spartacus Report – Welfare Cuts Campaign

  2. Pingback: Love Special Needs – The Spartacus Report – Welfare Cuts Campaign « Love All Blogs

  3. Julie says:

    Thank you for this post it prompted me to write to my own MP.
    You really empowered me to do something about it-so thanks.
    I really do hope she continues to fight this case- I have since written again to her urging a few more important points.
    Here is a copy of her reply

    “Dear Ms Day
    Thank you for your e-mail regarding ‘A report on the proposed changes to Disablity Living Allowance’.
    Since being elected as MP for East Lothian in 2010, many constituents have contacted me with serious concerns about the Government’s proposals for reform of DLA.
    The government’s Welfare Reform Bill legislates for the biggest change to the welfare system for over 60 years.  The benefits system should be simple and supportive, however, sadly all too often this is not the case.
    Like the authors of the report that you sent me, I am concerned that the stated aims of the reforms are to cut the amount of DLA claimants by 20% to save £1 billion by 2014/15. 
    This arbitrary cut is likely to leave thousands of working age disabled people unable to meet the additional costs that they incur as a result of their disability and it will also likely lead to an increase in the number of people living in disability poverty.
    For example, I spoke at a conference in Musselburgh last year and met with people who are in receipt of the lower rate of DLA, which is to be abolished. Many of the people I spoke to are in employment, but without this in work benefit would be unable to keep working. This doesn’t fit with the supposed claims of the Government as we will all lose out.
    Indeed, the decision to focus on ‘those with the greatest need’ risks leaving a large number of people without any help at all.  DLA is a vital source of support for those who don’t qualify for social care, but nevertheless face significant costs and barriers to participation as a result of their condition.
    That is why I have made representations on behalf of my constituents to DWP ministers on numerous occasions, both in writing and in the chamber of the House of Commons, to urge them to rethink their plans.
    In addition to this, I made a formal submission to the Government’s consultation on DLA reform where I outlined my objection to the government’s proposed 20% cut in the number of DLA claimants and the removal of the mobility component of DLA for people living in residential care. 
    I cautiously welcomed the Government’s announcement that it no longer plans to remove the DLA mobility component from people in residential care homes.  The news indicated that the Government was finally beginning to listen to Labour MPs, disability campaigners and, most importantly, the people whose lives will be affected by their hastily conceived and ill-advised plans. 
    As the report that you sent to me states: “In the 60s, disabled people told governments that there should be ‘nothing about us, without us.’ Sadly, over 40 years on we must produce a report that clearly reminds politicians of this principle.”
    Please be assured that, together with my Labour colleagues, I will continue to fight to protect the rights of the most vulnerable in our society and I will continue to look for opportunities to drive this issue home in Parliament.  I am aware that DLA reforms are being discussed in the House of Lords this week.
    Thank you again for contacting me about this important issue. Should you require my assistance in the future then please do not hesitate to get in touch.
    Yours sincerely,
    Fiona O’Donnell MP
    East Lothian
    T: 01875 824779

  4. Lizbeth says:

    I am upset–you went off my blogger follow thingie and I stopped getting your new posts. Agggh, sometimes I love to hate blogger. I followed again–we’ll see if that does the trick!

    As always, a very good and informative post.

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