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

Accessible live music: are venues doing enough for deaf children and young people?

Earlier this week I started my new role at the National Deaf Children’s Society as a Policy and Campaigns Officer. In particular, I’ll be working on all things digital, using social media, e-newsletters and more to engage individuals in campaigns concerning deaf children and young people.

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Liam O’Dell, Policy and Campaigns Officer – Digital, National Deaf Children’s Society

Such a techy job is quite exciting for someone who loves finding out about the latest gadgets and sharing their thoughts on social media – especially about music.

A few times now I’ve been lucky enough to venture down to Glastonbury (both in the scorching sun and the mud), and it’s always been an incredible experience – not least because of its access provisions for deaf people like me.

In one of the many main tents dotted around the site is Deaf Zone. Pop in there and you’ll find out about free sign language lessons for attendees (the sign for ‘Glastonbury’ is the peace sign with both hands, shaking the two fingers from left to right).

What was also impressive was the number of signed and interpreted performances – and these weren’t just reserved for the main Pyramid stage. Events on smaller stages and non-music events were also interpreted to ensure deaf people were able to access as much of the festival as possible.

Recently, sign language interpreters at gigs and concerts have gone viral online – and rightly so – for their creative versions of popular songs (most notably by rap star Eminem). Yet, while some deaf people have had positive experiences, others haven’t been able to access the support they need.

I’ve had my fair share of loud, noisy and inaccessible gigs. A performance by the band Years and Years a few years ago was affected by poor sound levels which drowned out the singer’s voice. I could feel the bass from the stage, but I still felt that sense of isolation which happens when a situation isn’t accessible.

It’s why I’ve often found myself drawn towards the smaller, intimate concert venues – where you’re not too far away from the artist to lipread them or from the stage to hear the show. Swap this for arena shows and festivals, and the more likely I am to feel a little bit confused by it all, with only the big screens to help me understand what’s going on.

Musical events – both big and small – need to be accessible, but there’s also the need for information on booking and venue websites about what services organisations provide for deaf and disabled people. It’s right that this is being recognised with Attitude Is Everything’s Outstanding Attitude Awards, which celebrates those who work towards making live events accessible.

After all, there’s a lot which goes into ‘the perfect gig’, and it’s not just the artist or band which you are going to see. Venue staff who are deaf aware also add to the experience, as does a straightforward and clear ticketing process.

While only organisations can nominate in the Outstanding Attitude Awards, the 10 categories are a great way of opening up a discussion about accessible music. What experiences have you had when it comes to live concerts and festivals? Were they accessible, and which would you nominate?

Supporting children early — England 0 : Wales 1?

Chris Mullen, Social Care Policy Advisor

Chris Mullen, Social Care Policy Advisor

Recently I attended the All Party Parliamentary Group for Children (APPGC) which discussed the APPGC’s second report Storing Up Trouble on the state of children’s social care services and social care funding in England.

Whilst the report highlights a crisis in children’s social care funding and makes various forthright recommendations, the emphasis on what action is required is being interpreted differently by key stakeholders. These can be broadly separated into two positions:

The first position focuses on addressing cuts in early help services, rising thresholds to access children’s social care support and a ‘demoralised’ social care workforce. The other position recognises the pressures on local authorities’ budgets but highlights the variation in the quality of support to vulnerable children across comparable local authorities and focuses more on improving decisions by social workers, their managers, commissioners and political leaders.

The meeting was attended by the Children’s Minister Nadhim Zahawi who perhaps not surprisingly adopts to the second position. He set out government action to improve the performance of social workers and champion evidence based practice through a new social work innovation fund and the What Works Centre for Social Work.

However, despite the minister mentioning the importance of early intervention on two occasions, he repeated the government’s continued position against any legislation to require local authorities to provide early help services.

At the National Deaf Children’s Society we know the importance of early intervention, a good example being the new-born hearing screening programme introduced in 2006. We also know research shows that early diagnosis and early intervention to support to parents of deaf children by a range of professionals has positive outcomes. Sadly some local authorities are being forced to cut visits by Teachers of the Deaf or support children based only on the severity of their hearing loss and not their actual level of need.

In 2011 Professor Eileen Munro took two years to review children’s social care, consulting widely across the sector and also with service users. Her conclusions were all adopted by the coalition government, except one, a duty on local authorities to provide early help services.

Wales has introduced the Social Service and Well-Being Wales Act 2014 making it the first UK country to place a duty on local authorities to provide a range of ‘preventative services’ for all people (children or adults) which ‘promote well-being’ and reduce their need for care and support. The Act has even brought in national eligibility criteria to prevent post code lottery of social care support seen across England.

If research by the What Works Centre for Social Work does show clear benefits that early help services make to the lives of children and families, the Government will find it hard to ignore the calls to take action. In the meantime, we’ll be continuing to call on the Government in England through our campaigns work for a new duty on local authorities to provide early help services.

Radio aids in the early years – your rights

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

We published research last year which shows that radio aids – which provide deaf children with additional amplification – can have a big impact in their early years development. In particular, they can make it easier for children to hear their parents and others more clearly when, for example, in the buggy or in a car. Despite these clear benefits, many local authorities do not make radio aids available to parents of pre-school deaf children to use at home.

We’re calling on local authorities to work with health bodies to review their policy on this issue and to ensure that parents are given the opportunity to try a radio aid with their children aged 0-4 , both at home as well as in early years settings to see if it works well for them.

Quality standards on the use of personal radio aids state that every deaf child should be considered for a radio aid at first hearing aid fitting.  However, families tell us that this does not always happen.  So what should parents do if the local authority says no? Here’s a brief summary of your options in challenging this:

First, you should ask for information on why your child has been turned down for a radio aid. In some cases, there may be good reasons why a radio aid is not the right option at this time. It’s also possible that a Teacher of the Deaf may have concerns about loss or damage to equipment. Having an open discussion may help to find possible solutions to any issues.

If the answer is still no, you can challenge this decision in two different ways.

  • If your child already has an Education, Health and Care plan (England), a statement of special educational needs (Wales and Northern Ireland) or a co-ordinated support plan (Scotland), you can also ask for a review of the plan/statement so that a radio aid can be added to it. You also have the right to request an assessment for a plan or statement if your child does not already have one. Our website has more information about your rights under laws for children with special or additional needs.
  • You can also make a formal complaint to the local authority on the grounds of disability discrimination. In particular, if you live in England, Scotland and Wales, local authorities and education settings are required, under the Equality Act 2010, to provide ‘auxiliary aids’ (which includes radio aids) as a reasonable adjustment to disabled people. They are also required to take steps under the Public Sector Equality Duty to proactively remove any disadvantage that disabled children may experience. Given the importance of good language and communication in the early years, we think it should be seen as unreasonable to deny a family with a deaf child a radio aid unless there are good reasons why not. Our website has more information about the Equality Act and how it can be used in education.
  • If the local authority still says no, you can appeal to a special Tribunal that hears cases about potential disability discrimination and/or a failure to follow laws relating to special or additional needs. There are time limits, so it is important to get more advice or information as soon as this happens.

For more information and advice, you can contact our Helpline. You can also borrow a radio aid through our Technology Test Drive.

If you have already made a complaint to your local authority or are still experiencing challenges, please do get in touch. We’re looking for families who, with lots of support from us, might be interested in taking legal action on radio aids in the early years – you can find more information about this in our short video.