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 – http://twibbon.com/join/spartacusreport
- 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 http://www.aspieinthefamily.com/2012/01/disability-living-allowance-a-reader-shares-her-mps-response/