New guidance increases cochlear implant eligibility

Today the National Institute for Health and Care Excellence (NICE) published new guidance on who should be considered a candidate for cochlear implants.

Background

Lady looking at the camera, with a PC desk next to her and a bookshelf behind her.

Vicki Kirwin, Development Manager (Audiology & Health), National Deaf Children’s Society.

The previous guidance was issued in 2009. The guidance forms part of the Technical Appraisal portfolio and as such the NHS is expected to make funding available for anyone who meets the criteria and wishes to have the procedure.

The previous guidance said that children could be offered two cochlear implants if their hearing was worse than 95 dB (profoundly deaf) at 2000 and 4000 Hz (the higher frequencies which are considered most important for speech understanding), if hearing aids weren’t able to provide sufficient benefit to be able to understand speech.

We felt that the previous candidacy criteria was dated and no longer fit for purpose. The UK had slipped into a position where we had one of the highest candidacy requirements in the developed world.

Recent research found that cochlear implants would be appropriate for children with lower hearing thresholds than the current guidelines and this meant that many children with profound deafness and cochlear implants were hearing better than children with severe deafness and hearing aids.

Whilst NICE guidance should only be seen as guidance and clinical judgement should also be applied, in practice NHS England refused to fund candidates outside of the identified criteria. This left a significant number of frustrated families (and professionals) who knew of the potential benefits but were unable to access services due to funding restrictions.

We got involved in a research Consensus Group and worked with both the British Cochlear Implant Group (BCIG) and the Action Group on Adult Cochlear Implants so that there is a uniform response to NICE from the sector.

New guidance

Now says that children with severe to profound deafness (defined as hearing only sounds that are louder than 80 dB HL at 2 or more frequencies of 500 Hz, 1,000 Hz, 2,000 Hz, and 4,000 Hz) in both ears, and who do not receive adequate benefit from hearing aids are candidates. Adequate benefit is defined as speech, language and listening skills appropriate to age, developmental stage and cognitive ability.

The National Deaf Children’s Society’s position

We thoroughly welcome these changes. NICE haven’t gone as far as we would have really liked (such as providing candidature for children with profound unilateral deafness or children with aidable hearing in one ear but not the other) but it is a massive improvement and means we won’t be behind many European countries as now.

However, the National Deaf Children’s Society’s work does not end here. The new candidature means that many more children now meet the criteria for cochlear implant assessment for already stretched services with ongoing NHS funding pressures. We will be working hard to ensure that services are adequately funded, available, and of good quality for every family that needs them.

If you need any further information or help and support contact our Helpline on 0808 800 8880 (calls are free from all landlines and major mobiles companies), live chat or helpline@ndcs.org.uk.

UK Government supporting deaf children in developing countries

When the global community comes together to tackle a problem – the results can be incredible. Fighting for girls’ education. Fighting the illegal wildlife trade. Taking on modern day slavery. All huge issues, all seeing a concerted global effort to stop them in their tracks.

Joanna Clark, Director

Joanna Clark, Director of Deaf Child Worldwide

The challenges facing disabled people in developing countries are no less great, and Penny Mordaunt is leading the way in breaking down the barriers they face.

Today she launched a far reaching, global strategy, with ambitious aims, and an even more ambitious vision for disabled people in some of the poorest parts of the world.

We know that 90% of disabled children in developing countries never go to school. Among the deaf children we work with at Deaf Child Worldwide, isolation is commonplace, exclusion is driving and entrenching poverty, and business as usual is no longer an option.

But while we celebrate the launch of today’s strategy, we should be under no illusion about how tough the journey ahead will be, and how much innovation, collaboration and ingenuity it will take. Translating this strategy into a practical roadmap for improving the lives of disabled people all over the world will not happen overnight.

But what today does demonstrate is that the human rights of a deaf child, excluded from school and isolated from their family, will now be a priority for the UK Government.

Help us support deaf children and young people

Back in 2014 the Government announced “a landmark moment in improving the lives of children with SEND and their families”. The 2014 Children and Families Act promised reforms that “put children and parents at the heart of the system”

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Steve Haines, Executive Director of Policy and Campaigns, The National Deaf Children’s Society

However, four years on from the reforms, our CEO, Susan Daniels was on Channel 4 sharing the findings from our latest poll of over 1000 parents of deaf children and young people. Only 5% of these parents thought that the system had improved for their children and almost half felt it had got worse.

The next day I joined a roundtable discussion hosted by the Westminster Parliament’s Education Select Committee with six other campaigners for children and young people with special educational need and disabilities. Although we came from different points of view, there was broad ranging consensus that the reforms had failed to deliver on their promise.

Sadly, as the parents of many deaf children and young people know all too well, accessing support is often a lengthy process of assessment, administration and argument and, in the worst cases, having to take cases to court. It all seems a terrible waste of resources that could be providing vital support for deaf children and young people instead.

As our Stolen Futures campaign has shown, funding for local authority services has continued to decline. In our poll of parents, 82 per cent said they did not feel there was enough funding for deaf children’s education in their area. The fact is that reforms without the funding to deliver them doesn’t equal results.

We’ve been campaigning to protect these vital services for deaf children and young people. We know change is possible and, working with local parents, have been successful in many areas in overturning or avoiding local cuts.

But we need the political will to take action. The day after the Select Committee, Susan Daniels, Ian Noon and I met with the Children and Families Minister, Nadhim Zahawi MP. We’d been really pleased when he joined our event outside Parliament earlier in the year, so had high hopes. But despite our best efforts and practical suggestions, we could only come away with assurances, rather than action.

It’s a critical time for services for deaf children and young people. We’re at breaking point. So now, more than ever, we need parents and carers, friends, families, and many others to sign up to our campaigns network and to join our fight for deaf children and young people to be able to access the services they need.

Molly needs your vote!

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Hi I am Molly, I was born in Wales and live in Carmathen and I am profoundly deaf and use British Sign Language. I am standing for election to the Welsh Youth Parliament because I feel passionately about showing that deaf young people can do anything with the right support in Wales. I know what it is like for deaf young people living in Wales and I want to stand up and be a voice for young people and improve deaf awareness across the Country. In the future I want to work in Parliament, help my dreams come true and vote for me!

Within my current school, I have been involved in the school council for the past two years. For the past year I have been the chair of the student council. Since 2016, I have been involved in various youth councils/groups. I am a member of the National Deaf Children’s Society’s Young People’s Advisory Board. I love to support and help others like me.

As a deaf young person in Wales, travel can be really difficult. This means it can be hard to meet other deaf young people. This can make deaf young people feel alone or stressed as they cannot make many friends. I want to change this and campaign about creating more local deaf clubs in Wales.

I want to change the views people can have of deaf people, showing them that they can do any job, or activity they want to do. Deaf young people can do anything.

Also, I would use technology to connect with you to find out your views and thoughts of how to make Wales even better for us! I would do this through e-mails and using social media and make sure they are passed onto the Parliamentary group.

I am really passionate about standing up for change. As an experienced chairperson for other youth councils I have a very positive and determined attitude to help you make changes across your Country.

To read more from my manifesto, click here: https://www.youthparliament.wales/candidate-profiles/060-15-e

Please support me by voting for me in the Welsh Youth Parliament. To vote you must register by Friday 16th November 2018. It will take you two minutes to register and help change Wales for the better.

To register, click here! https://www.youthparliament.wales/candidate-profiles/060-15-e

Westminster Hall debate on deaf children’s services

Ian Noon, Head of Policy and Research, National Deaf Children’s Society

Deaf children were at the heart of Parliament today when MPs debated the crisis facing deaf children’s services across England. There was lots of passion and commitment in the debate and a wide range of different points were raised, including:

• the pressures that local authority budgets are under – with over a third planning to make cuts to specialist education services for deaf children this year. Whilst government funding may be at a record high, the reality on the ground is clear that it’s not enough
• the need for more flexibility in how SEND funding can be used. Local authorities don’t have the same flexibility they used to have to move funding from schools where needed to respond to growing pressures
• the dramatic decline we’ve seen in numbers of Teachers of the Deaf over recent years, and the need for urgent action to address this. Many MPs spoke of the important role that Teachers of the Deaf play, particularly in the early years.
• importance of meeting the needs of deaf children who use sign language, and the need for the Government to support the development of a new GCSE in British Sign Language
• the need for high expectations for every deaf child, and the scandal that too many deaf children are not achieving their potential, because they’re not getting the right support.

The most powerful moments in the debate came when MPs talked about the experiences of families from their own areas. Peter Aldous MP praised Ann Jillings for her campaign work, whilst noting that she shouldn’t have to fight in the first place for her son Daniel to get the help he needs. Another MP, Darren Jones, talked about Ella, a bright confident deaf young person whose needs were often being overlooked because she seems to be “doing well”. And Emma Lewell-Buck MP spoke sadly about a young person who feels “left out” and “depressed and frustrated” because his school is not providing the support he needs.

We were hoping for positive words and action from the Minister, Nadhim Zahawi. But, while he indicated that funding was being kept “under review”, there was little else for us to go on. Frustratingly, there was a run-through of all the different bits of funding that the Government has in this area. All of this missing the point that a) it’s not enough and b) often this funding is not aimed at front-line staff who support deaf children. For example, there’s still no money out there focused on making sure we have more Teachers of the Deaf coming through the system.

So, the Stolen Futures campaign goes on, and we’ll keep on raising these issues with the Government until they take action.

We’d like to thank all MPs who spoke in today’s debate, especially Jim Fitzpatrick MP who led the debate and continues to champion the needs of deaf children. We’d also like to thank all the deaf young people and families who got in touch with their MP to share their experiences. This debate wouldn’t have been half as powerful without your stories.

PS: You can read the full transcript here.

Who is celebrating today?

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Martin McLean, Education and Training Policy Advisor (Post-14), National Deaf Children’s Society

Today is A-level results day. This means lots of TV footage of young people opening an envelope and then crying tears of joy as they pull out the sheet of paper that tells them they got the grades they need to get into their chosen university. Certainly for many, today will bring good news but what about deaf young people — how many will be celebrating?

One thing that irritates me about the media’s coverage of A-level results is that it completely ignores the fact there are many young people taking other qualifications than A-levels. Many students are also receiving BTEC and Level 3 diploma results on the same day or a bit earlier but you wouldn’t know it. Were their achievements not worth celebrating too? I think they are.

Sadly, too many deaf young people are not achieving what we call ‘Level 3 qualifications’; these are A-levels, BTECs, diplomas and other qualifications that will enable them to move onto higher education or widen their employment choices. According to Government data in 2017 only 41% of deaf young people in England achieved 2 A-levels or equivalent qualifications by the age of 19. This is a figure we believe is too low (65% of young people without disabilities achieved 2 A-levels or equivalent).

So what were the other 59% doing between the ages of 16 and 19? Most were continuing to work towards Level 2 qualifications (equivalent to GCSE) or below. This is important progress to make in order to be ready to take a Level 3 qualification or to move onto an apprenticeship. In 2017, 74% of deaf young people had achieved the equivalent of 5 GCSEs by the age of 19.

What happens after the age of 19 — do they continue studying or do they go into work? This is where Government data runs out.  We just don’t know and this is why we are commissioning research that will track young people over a period of 5 years, beyond education into employment. Watch this space — we will be releasing more info about this research soon.

If you have achieved your A-levels, BTECs or diploma today then a big congratulations! However, let us spare a thought too for those deaf 18 year olds who are not quite there yet or taking other routes. With the right support to gain the skills they need, some focus and ambition, they too can have bright futures.

Daniel’s Vlog – My Meeting with Nick Gibb

Hi, my name is Daniel and I’m a campaigner. I recently went to the Houses of Parliament in London to meet with the Minister for Schools Standards at the Department for Education, Nick Gibb MP. I asked to meet him because there still isn’t a GCSE in British Sign Language (BSL). This is really unfair to all children who use BSL as their first language. Have a look at my vlog to learn all about my day and my chat with Nick Gibb!

(This video is in BSL with subtitles)

 

 

https://e-activist.com/page/21204/action/1