A COLEFORD woman who lives with a genetic disorder says two decisions on welfare payments have left her without care and financial support.
Stephanie Jones has DiGeorge Syndrome and is partially deaf, has speech and soft palate issues, a heart murmur, frequent ear infections and a lowered immune system.
Stephanie, who is 29 and lives with her husband and young son, has had her support hours reduced from eight to three every week and says she has lost around £480 a month since she was told she was ineligible for Employment Support Allowance (ESA) and found out last week that she has lost her appeal.
Stephanie, who featured in the Review last July as she makes music as a hobby, said: “I can’t drive and the support I received was for me to get to hospital appointments, which I usually have twice a month, and to go shopping.
“When the hours were reduced I lost my support worker – I went for three months with no support at all – so now my mum has stepped in.
“The ESA payment was supposed to be permanent as there’s no way I can work.
“My husband Michael is self-employed and also acts as my carer, but we’re getting into debt, especially as I now have to pay for all my prescriptions, so he’s working longer hours to try to make up the shortfall.
Stephanie is now relying on her mother Rosalie Cox, who lives in Monmouth, to provide her reduced care.
Rosalie said: “I work every morning at the boys’ school in Monmouth and while of course I want to support Stephanie, she needs more help than she is being offered.
“Stephanie can’t leave the house on her own. She used to get help with the cleaning and laundry as well, but that’s been taken away. It’s just not right.”
“We’ve appealed against the decision about extra support with Gloucestershire County Council (GCC) and have lost – although there’s a chance Stephanie may be allowed an additional hour a week for hospital appointments.
“She was assessed by a physiotherapist regarding the ESA, who we feel wasn’t qualified to assess her given her condition.
“After advice from the Citizens Advice Bureau we appealed that decision too, but we have just heard that the appeal was unsuccessful – she was awarded nine points at the ESA assessment and you have to have 15 to qualify.”
A Department for Work and Pensions spokesman told the Review that all work capability assessments are carried out by fully trained healthcare professionals. He said: “The decision on whether someone is well enough to work is taken following a thorough independent assessment, including all available evidence provided from the claimant’s GP or medical specialist. Anyone who disagrees with the outcome of their assessment can appeal.”
Margaret Willcox, director for adult services at GCC, said: “It’s a priority for us to provide support where it’s needed, working on the basis that everyone in our care has individual needs that will change from time to time.
“Sometimes, new circumstances mean fewer hours of care are required.”
Stephanie added: “This is such a stressful situation for all of us. I felt so positive when I spoke to the Review before, but now I’ve lost all my confidence and I’m on anti-depressants as a result of the stress caused by the situation.”