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.

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.

It’s been too long! A call to update 2009 Safeguarding Disabled Children guidance.

Chris Mullen, Social Care Policy Advisor

Chris Mullen, Social Care Policy Advisor

In 2009, the Government in England published guidance on safeguarding disabled children. Guidance which, when read now, seems a world away from the way social care is delivered, written and even spoken about in 2018.

Since 2009 there have been some significant changes in the area of social care support affecting deaf children across the UK. There have been new laws, including:

• The Equality Act 2010 (UK) which addresses the discrimination faced by certain recognised groups, including disabled people, whether at school or in the community.
• The Children and Families Act 2014 (England) which includes arrangements for services to work together to support children with special educational needs and disabilities.
• The Social Service and Well-Being (Wales) Act 2014 and the Children and Young People (Scotland) Act 2014, both changing the way we consider how to support children and adults, focusing on promoting well-being and preventing need in the first place.

Since 2009, The National Deaf Children’s Society has commissioned research and undertaken surveys which confirm the barriers that deaf children face in accessing children’s social care in England. Specialist deaf sensory social workers have been replaced by social workers who now have to work across a huge range of children’s disabilities, leading to a possible ‘jack of all trades and master of none’ situation.

In addition, since 2009, the population of looked after children across the UK has risen from around 80,000 to 94,000. At the same time, funding cuts have led to the Local Government Association saying it will need £2 billion to address the shortfall in funding for children’s services by 2020.

We have also seen the ending of Aiming High for Disabled Children funding and the soon-to-be replacement of Local Safeguarding Children’s Boards in England with new, untried ‘Safeguarding Partners’ tasked with leading on safeguarding children in their areas.

Deaf children are one of the most vulnerable groups of people in society. Despite this there is no evidence to support the view that we are safeguarding deaf and disabled children any better than before.

Scotland, however, have recognised this and in 2014 updated its guidance relating to disabled children and brought it in line with their new way of supporting children and families.

Given the significant changes which have taken place in social care over the last almost decade, The National Deaf Children’ Society and The National Working Group on Safeguarding Disabled Children, are calling on the Government to update their guidance on social care. This new guidance will need to support professionals working with disabled children on the front-line, in order to adequately recognise these children’s needs and rights.

It’s a small step but a necessary one in the effort to give deaf and disabled children the same protection from harm that other children have.

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.

Grommet surgery not under threat

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Vicki Kirwin, Development Manager (Audiology & Health)

Recent headlines across the media have suggested that the NHS plan to cut some “ineffective” routine surgeries to save money. One of the treatments supposedly under threat is grommet surgery for children with glue ear.

We are aware that some of our members have raised concerns about the impact of these cuts on deaf children. However, we don’t feel that the headlines are a true reflection of the NHS proposals. We have read the draft consultation proposed by the NHS and it is clear that grommet surgery will still be available to all children who meet the current guidelines. It seems that the proposed changes are a way of making health professionals adhere more closely to these guidelines, rather than an attempt to stop the procedure altogether.

The selection criteria outlined in the proposal are:

  • All children must have had specialist audiology and ENT assessment.
  • Persistent bilateral otitis media with effusion (glue ear) over a period of 3 months.
  • Hearing level in the better ear of 25-30dbHL or worse averaged at 0.5, 1, 2, & 4 kHz
  • Exceptionally, healthcare professionals should consider grommets in children with persistent glue ear in both ears with a hearing loss less than 25- 30dbHL, where the impact of the hearing loss on a child’s developmental, social or educational status is judged to be significant.
  • The guidance is different for children with Down’s Syndrome and Cleft Palate, these children may be offered grommets after a specialist MDT assessment in line with NICE guidance.
  • It is also good practice to ensure glue ear has not resolved once a date of surgery has been agreed, with tympanometry as a minimum.

We feel that these guidelines are appropriate and we are not currently concerned that there will be a negative impact on the selection process. We don’t expect that it will be harder for families to access grommet surgery for their child; if it’s clinically necessary and their choice of intervention. If families have had issues getting the right treatment for their child we do, however, urge them to contact our Helpline.

The NHS consultation will be published soon and we will be responding to the final version. We will also closely monitor how the proposals are implemented locally. If anyone is concerned about the availability of grommet surgery in their local area please contact our Helpline or the Campaigns team at NDCS.Campaigns@ndcs.org.uk.

Jovita’s vlog — Taking Stolen Futures to Parliament

Jovita, one of our Youth Advisory Board members, went to Parliament on 4th July together with the NDCS Roadshow Bus as part of our Stolen Futures event. Take a look at her signed vlog below (this vlog includes subtitles).

The aim of the event was to talk to MPs about budget cuts to services for deaf children and young people. We also wanted to speak to Minister Nadhim Zahawi MP and convince him to have a meeting with us to discuss these spending cuts.

Thanks to Jovita and our other supporters on the day we have now been successful! Nadhim Zahawi has agreed to meet with us to discuss education services for deaf children — well done to all our campaigners! We will keep you updated about the outcome of the meeting.