Spartacus Stories

Here is a collection of Stories written by many different disabled people about the impact that DLA has on their lives. It also includes stories of fear about the proposed changes to personal independence payment.

Admin: benefitscroungingscum, Lucia and Lucy
to add your story email us at spartacusstories @ g mail . com (without the spaces) (your posts are there, just being scheduled throughout the day) (can you add how you want your 'name' to appear ta)

Tuesday, 17 January 2012

Dombeds Spartacus Story #spartacusreport #spartacusstories

I am Dombed and I would like to ask for the reform of Disability Living Allowance into the Personal Independance Payment to be paused. The government need to get this right and at the moment its looks like they aren't, and if you read on I will explain why.

It was just after my daughters 2nd birthday that it was noticed that something was wrong. She was put on multiple waiting lists and Autism Spectrum Disorder was indicated as the prime candidate, and we were told that we should claim for DLA for her. I duly rang up and asked for a form, filled it out and sent it back. That was the beginning.

After not hearing anything for 2 months I contacted the DWP, to be told that they had decided her claim almost 2 months ago - after having the claim form for less than 24 hours - but had not sent my a decision letter. They had turned her claim down as she was 'too young' to have extra care needs. I appealed as I did not agree - she could not communicate, had self-injurous behaviours like PICA and a lack of sense of danger that meant she had to  be closely supervised the entire time she was awake, which is sometimes more than 20 hours at a time, which is a very long time to be hyper-vigilant. She is totally exhausting, as much as I love her. As far as I am concerned that is way above that that you would expect with a 2 year old. You normally get to do housework, you don't have to remove foreign objects from their mouths or rescue them from shelves 6 feet off the ground 30 times a day. You don't have to have stairgates that are 5 feet tall in order to get any sleep at night.

We sat and waited and waited. I was doing my best to juggle caring for her, my disabled partner, our other child and work full time. It got the point that I was made very ill by all the stress and had a large amount of time off work, and in the end I had to temporarily reduce my hours at work because there were just not enough hours in the day. Eventually we got an appeal date which was 14 months after the date of the claim - the problems with ESA  and the Work Capability Assessment have had a large knock on effect on all benefit appeals.

At the tribunal they also felt my daughter was 'too young', but the chairperson instructed me to apply again immediately because they (the tribunal) would not turn the claim down again, even if the DWP did. At that point I was very close to giving up completely - the thought that we would win and finally be able to balance our family life was the one thing that kept me going for that year - it was the light at the end of the tunnel. More forms were ordered that day though, and filled in by our Speech and Language Therapist (who got quite indignant and sweary about the claim not being allowed).

This time they took several weeks over the claim. It was a very nervous few weeks. In the end they finally awarded her DLA - with care needs the same as they were a year before. All in all it took 16 months. 16 months to get assistance.

Now we have DLA for her we have been able to arrange life so it fits everything, and we also have a formal diagnosis of Autism Spectrum Disorder and developmental delay. Because the DLA passports to extra allowances of Tax Credits and Housing Benefit I have been able to reach a permanant agreement with my employer over my hours. I can still work and I can now fullfill my side of the contract, whereas before I could not due to my caring responsibilities and was risking disciplinary action. Her DLA has helped with things like her nappies (as she is unable to be potty trained), clothes and shoes (due to her behavioural problems she goes through them really quick) and sensory equipment and toys to try to help her to reach her full potential. In the future I am envisaging using it to buy her a special buggy, as at nearly 4 years old she is too big for a normal one, but there are times when she just will not walk.

If we were to lose her DLA at her reassessment (in 2013) we would be in severe dire straits. We would lose the passport allowances which means we would not be able to make ends meet - we would have to start deciding whether to eat or to pay the bills and rent., because eventhough I do not earn enough to live on, its too much to claim most means-tested benefits. And if PIP is brought in I feel there is a very real danger of that happening. PIP is missing some assessment criteria that is currently in DLA, which is needing supervision to prevent harm to yourself and to others. The removal of this criteria is of massive importance to my daughter, and many claimants with Autism, because its an area that people with Autism often have trouble with. Autism is not alone in this - brain injuries and things like premature dementia can also cause people to need supervision to keep themselves safe. Removal of this criteria will lead to people having their DLA withdrawn, eventhough their care needs have not changed, and the people affected will be some of the ones least equipped to cope with an appeal or loss of income.

My daughters Autism Spectrum Disorder also does not lend itself well to a face-to-face assessment. There is no way 20 minutes in an office with a doctor, who may or may not have any knowledge of Autism, will be able to verify the diagnosis, let alone her care needs.

This type of assessment is totally inappropriate for Autism. Its a called a spectrum disorder for a reason, and its a very broad spectrum. No two people with autism will present with the same characteristics - some will speak while others are non-verbal, some will stim others won't, some will avoid eye contact others won't. Unless the health professional has considerable indepth knowlegde of all aspects of Autism and all the characteristics that may or may not be present they WILL NOT be able to make any judgement on the level of impairment an Autistic individual has. For example, if you ask my daughter the 'right' questions she can fool you into thinking she can communicate. If the health professional did not ask her the same question 5 times they would not notice they fact she uses the same intonation every time - that it is a learned response to that question and that question alone, and she cannot answer if its phrased slightly differently because she has not learned how. The chances of her exhibiting her self-injurous behaviours or stimming during the 20 minute snap-shot are not favourable either. A face-to-face assessment will be inaffective at helping the decision process at best and at worst, very damaging to a persons claim.

Her own health professionals (all of which are very experienced) have, and will continue to, provide accurate evidence of her impairments to the DWP decision makers, and they are far better placed to than anyome else.

Please pause  the reform to PIP before massive hamrful mistakes can be made.


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