A win for who?

The DWP will pay nearly £50,000 in damages to a deaf man after repeatedly failing to provide him with the interpreters he needed for job-related interviews. Paul Rimmer said he believed his local Jobcentre failed to provide the support he needed because they found it “too difficult and too expensive”. The employment tribunal has now told DWP to pay Rimmer £49,880 in damages and interest payments for the years of discriminatory behaviour. Mr Rimmer warned most DWP staff “do not understand the difficulties facing me as a profoundly Deaf person”.

He told Disability News Service: “I am shocked about the barriers and discrimination that I have had to go through. I was shocked about the lack of training [DWP/Jobcentre] staff have had, lack of deaf awareness and how I have been stuck in a system and unable to move on. “I was shocked by what I have heard in evidence from DWP staff. I am proud of what I have achieved and hope that it helps other people as well as myself.” He added: “I know that the same thing happens at other jobcentres and I hope things will change more widely.

“I hope it doesn’t just change at Leeds but that the DWP look more widely at the training of staff across the country.” Nick Whittingham, chief executive at Kirklees Citizens Advice and Law Centre, said: “This case shines a light on the way that disabled benefits claimants are treated by the DWP, and is particularly important in light of current political rhetoric. “The indications are that failings are systemic and that provision for supporting deaf and other disabled people is limited both by funding constraints and by an institutional failure to understand, or even attempt to understand, their needs.”

A DWP spokesperson said: “We are considering this judgment. We are committed to providing accessible services to ensure customers who need extra assistance can access our help.”

ATR COMMENT:  A victory for BSL-using deaf but a hollow one for deaf or the HI who do not use sign language, with the refusal to offer them text or lip-spoken support is an accepted norm.  Even areas dedicated to their support offer access piecemeal or via post code lottery.  ATR did a FOI request to all Health trusts in Wales, none, returned data on text or lip-speaking access provision, most offered BSL instead to deaf who don't use it. Why aren't non-BSL charities more aggressive in demanding the support they are entitled to?

Can you benefit by gene therapy?

Who could benefit next from gene therapy that restored deaf toddler’s hearing?

Thousands of children across the world who suffer from deafness and hearing loss have been given hope after a ground breaking trial allowed a British girl to hear noises for the first time. Opal Sandy, aged 18 months, was born deaf because of auditory neuropathy, which is caused by the disruption of nerve impulses travelling from the inner ear to the brain.

Now, thanks to a “one and done” gene therapy trial being carried out in the UK and worldwide, Opal’s hearing is almost normal – and could yet improve after she became the first person in the world to take part in a ground-breaking gene therapy trial. Opal, from Oxfordshire, was treated at Addenbrooke’s Hospital in Cambridge. The surgeon and chief investigator for the trial said he hoped she would be the first of many people to benefit from new kinds of gene therapies that can treat inner ear issues, such as hers, and potentially other kinds of hearing loss as well further down the line.

“These results are spectacular and better than I expected,” said Professor Manohar Bance, a surgeon and chief investigator for the trial. “Gene therapy has been the future of otology and audiology for many years and I’m so excited that it is now finally here. This is hopefully the start of a new era for gene therapies for the inner ear and many types of hearing loss,” he said.

How does the treatment work?

Auditory neuropathy can be caused by a fault in the OTOF gene, which is responsible for making a protein called otoferlin. This enables cells in the ear to communicate with the hearing nerve. To overcome the fault, the “new era” gene therapy – from biotech firm Regeneron – delivers a working copy of the gene to the ear. In Opal’s case, she received an infusion containing the working gene to her right ear during surgery last September.

Opal’s surgery was very similar to fitting a cochlear implant, according to Professor Bance. He said the inner ear (cochlea) was opened and the treatment infused using a catheter over 16 minutes. “We have to make a release hole in another part of the ear to let the treatment out because it has to go all the way through the ear,” he said. “And then we just repair and close up, so it’s actually a very similar approach to a cochlear implant, except we don’t put the implant in.”

Can anyone who is deaf benefit?

Children with a variation in the OTOF gene often pass the newborn screening, as the hair cells are working, but they are not talking to the nerve. It means this hearing loss is not commonly detected until children are 2 or 3 years of age – when a delay in speech is likely to be noticed.

Professor Bance said: “We have a short time frame to intervene because of the rapid pace of brain development at this age. Delays in the diagnosis can also cause confusion for families as the many reasons for delayed speech and late intervention can impact children’s development.” 

How many countries offer free Hearing aids.

Examples of countries that offer free or low-cost hearing aids:

United States:

The National Institute on Deafness and Other Communication Disorders (NIDCD) provides funding for research and development of hearing aids, but it does not offer free hearing aids directly.  Some non-profit organizations, like the Starkey Hearing Foundation, offer free or low-cost hearing aids to individuals who cannot afford them.

Canada:

The Canadian Hearing Society offers free hearing aids to eligible individuals through its "Hearing Aid Program" in certain provinces.  Some provincial governments, like Ontario, offer subsidized hearing aids to eligible individuals through the "Assistive Devices Program".

Australia:

The Australian government's "Assistance for Eldest Residents (AER)" program provides financial assistance for hearing aids, including some free or low-cost options.  Non-profit organizations, like the Australian Hearing Society, also offer free or low-cost hearing aids to eligible individuals.

United Kingdom:

The National Health Service (NHS) provides free hearing aids to eligible individuals who have a diagnosed hearing loss.  Some charities, like the British Academy of Audiology, offer free or low-cost hearing aids to individuals who cannot afford them.

Sweden:

The Swedish government's "Hearing Aid Program" provides free hearing aids to eligible individuals who have a diagnosed hearing loss.

Finland:

The Finnish government's "Hearing Aid Program" provides free hearing aids to eligible individuals who have a diagnosed hearing loss.

Denmark:

The Danish government's "Hearing Aid Program" provides free hearing aids to eligible individuals who have a diagnosed hearing loss.

New Zealand:

The New Zealand government's "Subsidies for Hearing Aids" program provides financial assistance for hearing aids, including some free or low-cost options.

Ireland:

The Irish government's "Hearing Aid Program" provides free hearing aids to eligible individuals who have a diagnosed hearing loss.  These programs may have specific eligibility criteria, such as age, income level, or disability status. Additionally, some countries may have other programs or initiatives that offer free or low-cost hearing aids.

UK deaf: Years behind Latvia...

A deaf woman who moved to the UK to study said the UK was well behind her native Latvia for people with hearing problems. Beate Grinspone was born deaf but said she never felt like an outsider in her home country. Every cinema had automatic subtitles, interpreters were always available and Latvian people were more than happy to find alternative ways to speak to a deaf person, she said. But after moving to the UK she said she experienced discrimination and little effort from others to support her.

Through a BSL (British Sign Language) interpreter, Beate, from Smethwick, said: "I didn't feel disabled in Latvia. I was born deaf but my family are all hearing so I am the only deaf person. "I was always left out of everything because I could not voice my opinion, so I just followed. I was sent to an oral school and I was taught to speak, sign and lip read.

"Latvia is a small country and they had interpreters, if you go to court or a theatre they have connections to deaf organisation who make it accessible. All films have subtitles and on a court date they provide an interpreter immediately. "You (UK) are regarded as quite advanced but you are quite behind. There is a massive fear in England of being sued, health and safety breaches and fear of us."

1,9m live in Latvia, London alone has  9.7m.  The issue is Language, if she had stuck with Latvian she she may have been better off, because the UK BSL area is chaos anyway. Immigrants tend to have fewer issues accessing support than the locals. Immigrants know what they have to do to manage life and work in the UK.  The UK deaf natives just complain and do nothing, instead, demanding everyone else conforms to them.  NOT going to happen, we have to be pro-active and adjust.  

Incidentally London and Wales are the best areas of the UK to be deaf in.  The UK isn't a village, currently not even a country or a kingdom United.  The key thing is to not get angry about it, the UK is still way ahead of France and other countries (sorry best we can suggest!).  Deaf have to stop sniping from cultural cover and get with it.  There are laws in Wales empowering the native Welsh speaker, not really working either. less than 29% do, in perspective, only ONE percent of deaf are fluent in...... BSL, or have a qualification in it, perhaps start there?

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BSL Deaf attack gene success.

Swiftly following on from a great success in enabling hearing in a deaf child.  Leading UK deafie like Rose Ayling-Ellis admitted she's "heartbroken" and "frightened", and the BSL Charity the BDA attacks gene therapies as undermining deaf people and their culture.  Rose attained fame by NOT using BSL, and was a lip-reader, who went over to the 'dark side' to enjoy BSL luvvie status instead and become a martyr for their lost cause.  The BDA charity a pain in the hearing loss backside.

Go Opal!

What right do these people have to tell parents of a deaf child or us as deaf adults, to not support or opt for medical advances that help us?  Rose isn't this child's mother, the BDA is not this child's family either.  Don't tell others what they should or shouldn't do.

ATR asks, is it not time these extreme areas of 'Deaf' people (Obviously we aren't because our face didn't fit), were put in their place for their relentless assaults on any sort of alleviations of deafness or possible cures and research on hearing loss?  Since day one it is don't have CI's, don't wear hearing aids, don't lip-read (That's oralism), and question the value of BSL under pain of eternal damnation.  

Maybe we could start  by asking fund-givers, and ask the charity commission, to lay down more strict criteria on handing funds over to an area, that represents people who want to prolong reliance, maintain a disability, erect a tiered education system with its own language' dominant, to create deaf have, and have-nots, and to promote some sort of sign-using elite,  and undermine free choice?

10m people exist in the UK with hearing loss from slight to profound degree. 10m these people only recognise when they want more money to promote their own way of life.  Whose entire membership is point.00002% of us all.     Should we be taking any notice of a a small, group of secular deaf miseries who would begrudge a small child an opportunity in life, because they don't want it, or it won't work for them? So who is forcing them? NOBODY is!  They should openly admit it means less deaf they can control, less kudos and ego's to be inflated, and less money for them to spend on themselves.

It's time we exposed these people as totally unrepresentative of fair-minded deaf people.  They shame us all.

The Deaf hear again.

A baby girl born completely deaf can hear for the first time after receiving ground-breaking gene therapy. Opal Sandy from Oxfordshire was eleven months old when she was treated at Addenbrooke’s Hospital in Cambridge. She is the first British patient and the youngest child to receive this type of treatment.

Opal was born deaf because of a rare genetic condition, auditory neuropathy, caused by the disruption of nerve impulses travelling from the inner ear to the brain. Within four weeks of having the gene therapy infusion to her right ear, Opal responded to sound, even with the cochlear implant in her left ear switched off.  Clinicians noticed continuous improvement in Opal’s hearing in the weeks afterwards.

At 24 weeks, they confirmed Opal had close to normal hearing levels for soft sounds, such as whispering, in her treated ear.  Now 18 months old, Opal can respond to her parents’ voices and can communicate words such as “Dada” and “bye-bye.”  Opal’s mother, Jo Sandy, said: “When Opal could first hear us clapping unaided it was mind-blowing.

We were so happy when the clinical team confirmed at 24 weeks that her hearing was also picking up softer sounds and speech. "The phrase ‘near normal’ hearing was used and everyone was so excited such amazing results had been achieved.”

ATR COMMENT:  We know there will be mutterings this is a one-off success over a rare deaf gene, but ATR welcomes the brilliant work of those dedicated professionals attacking this pandemic of deafness and hearing loss.  We know certain deaf areas oppose intervention, but today nobody is going to listen to them.  Today one gene is addressed tomorrow maybe more, at least something positive is beginning to emerge, after years and years of 'breakthrough's' that never manages to.

Inclusion For the elite few?