D.L.A. ...a word to the wise
This article first appeared in the Spring 2001 newsletter of the charity LOOK.
By ANN SBEINATI, Look’s (former) Family Support Officer in Wales, who was joined by John Sanders from the Nystagmus Network at an Appeals Tribunal in South Wales involving a five-year-old girl with nystagmus.
Five-year-old Laura Jenkins was her mother Mary’s third child to have nystagmus, photophobia and skin sensitivity to ultra-violet light. The Jenkins were referred to me a year ago as a family that had slipped through the DLA (Disability Living Allowance) net.
I spent hours talking to Mary so that I could record accurately the extra attention she gave to each child. Reports were obtained from the LEA (Local Education Authority) advisory teacher and from a leading optometrist. Each application for DLA included information about nystagmus. They were no different from other applications I had helped to compile…all of which, bar one, had succeeded.
But I became anxious when I heard that a visiting doctor from the Benefits Unit was to visit the family. My other “failure” had received such a visit, too, and this also concerned “multiples” in the same family.
Once again, alas, we did not get what we wanted. Mary Jenkins’s older children were awarded low mobility rate, but no care component. Laura’s application was refused totally.
I was unsuccessful in two reviews of the decision on Laura - and then obtained a copy of the doctor’s report. The questions on which it was based seemed to restrict the amount of information that could be revealed…and others were worded ambiguously.
For example, to the question: “Does the child have a problem with Communication?”, the doctor had ticked the “No” box. I had ticked “Yes”, because communication is a two-way process -and a visually impaired child misses visual cues like gestures, facial expressions, body language, street signs, etc, etc.
I was determined to appeal the decision against Laura - and invited John Sanders, of the Nystagmus Network, as “expert witness”. We were delighted with the appeal’s findings for Laura: Middle Care and Low Mobility rates, set for five years and back-dated for 12 months.
It was just a pity that it needed a Tribunal to produce this deserved outcome. But another message comes out loud and clear: DON’T GIVE UP. TRY AGAIN…AND LOOK CAN HELP!
… AND THIS IS HOW JOHN SAW IT
As we were leaving the room, the Tribunal chairman waved a piece of paper in the air and said to Mary Jenkins: “You’ll need this to show the Benefits Office so you can claim the back-dated Disability Living Allowance.” By the time we’d got to the lift, Ann Sbeinati had worked out that, at £50 a week, a year’s back-dated DLA was worth more then £2,000.
Only 10 minutes earlier, Ann, Mary and I had sat waiting for the tribunal’s decision. We’d spent an hour being questioned by the chairman and his two colleagues before being ushered out while they made their decision.
We had no idea which way it would go. Now we were all hugging each other in the corridor and beaming like a bunch of Cheshire cats.
It was the first time I had appeared as an expert witness and I had a few things to learn. I did try to put a word in edgeways - but the Chairman was going to run it his way…so I shut up until my turn came.
We stressed how variable nystagmus was - and how dependent Laura was on her Mum. Mary’s comment that she had to show Laura where the loos were whenever they went somewhere new really made an impact.
We’re not claiming this happy afternoon was a First! A lot of children with nystagmus already get DLA. But it’s very gratifying to overturn a decision which we were convinced was wrong.
Email: John Sanders
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