How to…stop a hearing impairment unit closing

Beccy Forrow Policy and Campaigns Officer

Beccy Forrow, Policy and Campaigns Officer

What would you do if the hearing impairment unit your child attends was in danger of closing? I’m guessing most parents would do something very similar to Wokingham parent Faye Gilbert….

Faye contacted us back in June about the HIU, based at Emmbrook Infant School, closing. Faye’s son Rhys goes to the unit and was really thriving at the school.

Although the council were allowing all the children currently in the unit to stay until they moved on to Junior school, Faye thought it was important that deaf children in the future also have the opportunity to study in an HIU, if that’s what’s best for them.

So, how was the unit saved? Faye did a number of things to persuade the council to change their minds. Most of them aren’t new or difficult but they did need time and persistence to make the difference. But happily anyone can get involved in a campaign like this…

  1. Tell people about the problem and get others that are affected on board – one of the first things Faye did was start a petition on change.org. She got nearly 2,000 supporters to sign the petition – which certainly got the attention of the council and the local media.
  1. Make sure the people who make the decision know about your campaign – the best way to do this is to speak to the media because bad media coverage is rarely ignored by councils. We can help with getting coverage and preparing for an interview but journalists almost always want to speak to someone affected by the changes.pester power
  1. Don’t stop! – decision-makers might assume that you don’t have the stamina to keep going when it looks like the odds are against you, but we all know that pester power works! Email the council and encourage as many people as you can to do the same. It doesn’t take many emails from local people for a council to starting doubting whether they are doing the right thing. Local councillors are elected by local people every four years so they will be nervous about upsetting people by making a bad decision. If you don’t get the response you want, keep writing until you do.

Although we supported Faye to win her campaign we can only ever do so much. We always need families of deaf children on board with any campaign and usually decision-makers give more weight to the views of deaf children and their families. There are a few things we can help local campaigners with:

  • emailing local parents to tell them about the issue to amplify your voice
  • joining campaigners at council meetings and help you to prepare for meetings
  • working out when key decisions will be made and who can influence the decision
  • writing letters to the council about their legal responsibilities to deaf children
  • helping you to get media coverage and to prepare for an interview
  • finding evidence about the progress made by deaf children in the local area to add weight to you arguments.

But…we can only do this if parents and those working with deaf children tell us about problems or concerns as early as possible. You can email campaigns@ndcs.org.uk or call our helpline on 0808 800 8880 – with any information that you think is worrying.

Getting it right from the start

ndcs_right_start

Today, we’re launching a new campaign in England, called Right from the Start.

NDCS - Ian Noon, Head of Policy and Research

Ian Noon, Head of Policy and Research

The campaign is celebrating 10 years of newborn hearing screening and how this simple and painless test has literally transformed the lives of thousands of deaf babies.

But whilst screening has made a big difference, there is still much that needs to be done. Once diagnosed as deaf, children and their families need high quality support to ensure they can develop the language and communication skills that are the foundations for success in later life.

Unfortunately, it’s clear that this support is not being provided consistently across the country. We know there’s a massive attainment gap in the early years foundation stage, where children are assessed among a range of early learning goals. We also regularly hear from parents that vital support, such as audiologists, Teachers of the Deaf, support with communication and so on is not being provided when it can have the most impact.

We’re calling on the Government, local authorities and health bodies to work together and make a commitment to ensure high quality support is in place as soon as a child is diagnosed as deaf. Our campaign report explains how the benefits of hearing screening at birth are being lost and what action is needed to ensure deaf children get the right support, right from the start.

Join us in getting it right from the start. We’re asking our campaigners to email our report to their MP and to ask them to take action.

There’s lot of other ways you can support the campaign. Find out more at www.ndcs.org.uk/rightfromthestart.

Scottish Election 2016: what do the main parties offer deaf children and their families?

Katie-Rafferty-cropped

Katie Rafferty, Policy & Campaigns Manager, Scotland , National Deaf Children’s Society

With less than a week to go until voting takes place on 5 May, we read the five main political parties’ manifestos, and looked at what they offer in relation to education support. What promises will impact on deaf children and their families? Here we provide a brief education round-up.

How will each party ensure every child gets the support they need to reach their full potential at school?

Most of the parties have a strong focus on closing the education attainment gap in the next term of Scottish Parliament. Below we have set out how each party plans to improve education.

Scottish Conservatives Party

  • Commit to additional funding to follow individual pupils with Additional Support Needs (ASN).
  • They also commit to reversing the Named Person legislation and instead setting up a Crisis Family Fund to support vulnerable children.

Scottish Green Party

  • Commit to reducing class sizes as well as protecting ASN teacher posts in recognition of their role in closing the attainment gap for children from different backgrounds.
  • They are against further testing with a focus instead on teacher/pupil ratios.

Scottish Labour Party

  • Will establish a Fair Start Fund, funded through the re-introduction of the 50p tax rate for those earning over £150,000.
  • This fund will go towards closing the attainment gap as well as generally making sure vulnerable children get the support they need.

Scottish Liberal Democrats

  • Will introduce a 1p increase in income tax to reverse cuts in education and provide greater support.
  • They also propose the introduction of a pupil premium which would attach funding to individual pupils.

Scottish National Party

  • Commit to maintaining teacher numbers and allocating funds directly to Head teachers to allow them to invest resources in ways they consider will have the biggest impact on attainment.
  • They will implement the new National Improvement Framework which they hope will drive up standards for all and help close the attainment gap for pupils from the most and least affluent backgrounds.
  • The SNP is the only party to include a specific commitment to delivering Family Sign Language courses, to help hearing parents communicate with their deaf child.

So far over 2500 emails have been sent to local candidates reminding them about the needs of deaf children. Take action today by contacting your future MSPs and help us reach every candidate in Scotland.

Email your candidates

 

Broken promises in education?

NDCS - Ian Noon, Head of Policy and Research

Ian Noon, Head of Policy and Research

Today is the first anniversary of the Children and Families Act 2014. This made lots of big changes to the education system with the Government promising that the changes would result in children with special educational needs (SEN) and disabilities getting better support.

But you may want to hold on before getting any birthday candles out…. when we asked parents of deaf children recently if they had noticed any improvements to the support that their child receives over the past year, we were pretty shocked that only 6% said they had.

This is one of many worrying stats in a new campaign report called One year on, being published today by the National Deaf Children’s Society. The report includes the results from our survey of parents of deaf children, as well as views from deaf young people and our analysis of the quality of information that local authorities are providing through their ‘Local Offers’ (one of the big changes made last year).

Some other shocking stats from the report include:

  • Only one in ten parents of deaf children were confident that their local authority is successfully implementing the changes.
  • Only 16% of families had seen the Local Offer for where they live.
  • Of those that had seen their Local Offer, 24% said it was easy to find the information they were looking for and 28% reported that the Local Offer gave them information about support for deaf children in their area.
  • Only 7% of parents said their child had been afforded a direct opportunity to help develop the Local Offer and give their views on it.

    Email your MP button about the broken promise in education

    Email your MP about these broken promises in education

  • When we looked the information provided within Local Offers, we found that in 41 Local Offers, it was hard to find information about special schools and resource provisions in the area. 93 local authorities didn’t provide information about specialist provision outside of their own area.
  • Where deaf children were undergoing an assessment for an Education, Health and Care plan (which are replacing statements of SEN), 29% did not feel that the local authority took steps to minimise disruption to their family during the assessment process and 58% had to repeat the same information about their child to different people – both things that families were told would change under the new system.

Overall, our analysis suggests that many local authorities are not doing a great job in implementing these changes and that some may in fact be acting unlawfully. For example, by law, the Local Offer must include information on special schools in the area and nearby, yet our analysis suggests that many are failing to do so.

You could argue that these are just teething troubles and that more time is needed for these changes to bed in. But it’s worth remembering that many of the above changes were piloted for over 2 years in advance of September 2014. Press releases from the Department for Education at the time trumpeted how many local authorities reported being ready for the changes. And the Department for Education has funded a wide range of bodies (including the National Deaf Children’s Society) to support local authorities in implementing these changes.

The National Deaf Children’s Society report makes a number of recommendations to help the Department for Education and local authorities keep their promises to parents of deaf children. At the top of the list is making sure that Ofsted hold local authorities to account. We’ve been long-promised a new inspection framework. But, one year on, there hasn’t yet been a consultation document on how this will work. And early indications suggest that any inspections will be fairly general and won’t have any specific focus on the specialist education services that deaf children rely and which are key to making sure these reforms work for deaf children.

You can support our campaign work in this area by emailing your MP and asking them to raise our concerns with the Government. And if you want to find out more yourself about these changes and your rights under the new system, take a look at the factsheets on our website.

The Government made a range of promises that children with special educational needs and disabilities would get better support. One year on, it’s time to hold the Government to these promises.

Cuts to disability benefits? We’re watching the Budget

Liz Partridge, Senior Policy and Campaigns Officer

Liz Partridge, Senior Policy and Campaigns Officer

The National Deaf Children’s Society alongside Blind Children UK, Sense and the Royal National Institute of Blind People (RNIB) are very concerned about potential cuts to disability benefits ahead of the budget statement on the 8th July.

We know that the UK Government wants to save £12 billion from the welfare bill. We are really worried about the impact this will have on families with children with sensory impairments, many of whom rely on disability benefits to help them meet the additional costs of raising a child with a disability. We are asking you to take action and call on the Government to protect benefits for children with sensory impairments.

What the Prime Minister has said

Stephen Timms MP recently asked the Prime Minister if he would ‘confirm the commitment he made during the election that there will be no cuts in the benefits paid to disabled people.’

The Prime Minister’s response was as follows:
What we have actually done is to increase the benefits paid to disabled people by bringing in the personal independence payment, which is more generous to those who are most disabled. May I say how much I enjoyed meeting the right hon. Gentleman during the general election when we both addressed the Festival of Life in the ExCeL centre in his constituency? I do not know about him, but it is certainly the only time in my life that I have talked to 45,000 people at the same time, and I suspect the same goes for him.”

We are extremely worried that the Prime Minister did not confirm his previous commitment that there will be no cuts to benefits for disabled people. We are also aware that Personal Independence Payments (the benefit replacing Disability Living Allowance for 16 – 65 year olds) has not been more generous for young people with sensory impairments and in many cases has been removed altogether.

Now is the time to take action.

Take action

It is vital to take action now before the budget statement on the 8th July. Email your MP to ask the Chancellor to ensure benefits for children with sensory impairments are protected in the upcoming budget!

Listen Up! We want to share your videos with NHS England

Liz Partridge, Senior Policy and Campaigns Officer

Liz Partridge, Senior Policy and Campaigns Officer

We’re meeting with NHS England on the 5th March to talk about our Listen Up! campaign and we need your help!

If you’re a parent of a deaf child or have used audiology services yourself, we would like you to produce a short video telling NHS England why you think good quality audiology services are so important for deaf children. We’ll then share your videos in our meeting with NHS England.

Having your voice at the meeting will really help to keep the pressure on NHS England to ensure that all children’s audiology services are good quality.

Please send your video to campaigns@ndcs.org.uk by the 4th March next week. We look forward to hearing from you.

You could also share your videos on Twitter, making sure to @NDCS_UK and use the ‪#‎AudiologyStory‬

We thought we’d have a go too, check out our Vine!

Watch this space for updates following our meeting next week.

 

NEW Devon CCG abandons plans to ration hearing aids! Four reasons why this decision would have breached the CCG’s statutory duties.

Image of Sarah Collinson, NDCS Regional Director for the South West

Sarah Collinson, Regional Director for the South West

The North East and West (NEW) Devon CCG has confirmed that it has abandoned its decision to ration deaf patients over the age of 18 to just one NHS hearing aid. The policy to restrict hearing aids had been announced in an ‘Urgent and Necessary Measures’ notice issued in December and was intended to affect all adult hearing aid users in the NEW Devon CCG area; the only exceptions would be people with additional sensory disabilities and patients with conditions such as autism ‘where social cues may be particularly important.’

As NDCS supports young deaf people into early adulthood and campaigns for all deaf children and young people to have access to good quality audiology care, the NEW Devon CCG’s moves called for a swift response, not only because it was due to be introduced with immediate effect, but also because other cash-strapped CCGs might be considering similar measures and would be watching the Devon situation closely.

With local campaign action by NDCS members, regional TV news coverage and letters to the CCG and local MPs, we pulled out all the stops to try to convince the CCG to think again. Along with pressure from Ben Bradshaw MP and Action on Hearing Loss, our action seemed to pay off, with the CCG announcing shortly before Christmas that it would suspend the decision to ration hearing aids until the issue had been considered by its Clinical Policy Committee (CPC).

When I discovered that the CCG’s Governance Committee was to look at the issue again in early January, I sent a second letter to the CCG’s Chair outlining our concerns with the proposed policy and highlighting a number of key areas where it would seem to breach the CCG’s statutory duties under the NHS Constitution and the Health and Social Care Act (HSCA). This additional pressure has borne fruit, as just a few days after looking at the issue again, the CCG has announced a complete U-turn, with the rationing of hearing aids now entirely shelved.

In case other CCG’s might have been thinking of restricting adults’ hearing aids in this way, it’s worth highlighting the main reasons why they would be wrong to do so, as I pointed out to the NEW Devon CCG:

  • The CCG is duty-bound under the NHS Constitution and the HSCA to promote equality through the services that it provides and to pay particular attention to groups or sections of society where improvements in health are not keeping pace with the rest of the population. Deaf young adults are already significantly more likely to suffer mental health problems and face higher barriers to education; deaf people are four times more likely to be unemployed that hearing people. Any measure that will compromise their ability to use their hearing as effectively as possible will exacerbate these risks and disadvantage them further.
  • Patients have the right to expect local decisions on funding of treatments to be made rationally following a proper consideration of the evidence. NEW Devon claimed in the Urgent and Necessary Measures notice issued in December that ‘Evidence suggests that correcting hearing in the second ear … is far less cost-effective even though people derive some benefit from it.’ Yet, for 20 years or more, binaural aiding has been universally accepted as the most appropriate and effective treatment for the majority of cases of bilateral hearing loss. Not only would we dispute the apparent cost-savings to be made for the CCG, but we can’t accept that one hearing aid is as good as two. In fact, there is evidence that bilaterally deaf hearing aid users are disadvantaged if they have to rely on one-sided hearing. Hearing with just one ear or one hearing aid leads to problems for the brain processing sounds, understanding speech in background noise and localising the source of a sound.
  • The NHS Constitution also gives patients the right to be given information about the risks of treatment options available. The CCG’s Urgent and Necessary Measures notice didn’t mention the risks of one-sided aiding for people who are deaf in both ears. This would have to be taken into account in any comparative cost-benefit analysis of providing one hearing aid instead of two. Quite apart from the heightened risk of mental health problems and other comorbidities, there is also a risk of monaural aiding of bilaterally deaf people doing harm to the patient by causing non-reversible auditory deprivation to the unaided side. In a significant number of patients, auditory deprivation has been found to be significant and irreversible, and it isn’t possible to predict which patients are likely to be affected in this way.
  • The Health and Social Care Act stipulates that the CCG must make arrangements to ensure that individuals to whom the services are being provided are involved in the development and consideration of proposals where the proposals would have an impact on how services are delivered or the range of health services available. To our knowledge, the CCG conducted no consultation with patients and other stakeholders on possible hearing aid rationing prior to issuing the Urgent and Necessary Measures notice in December. The lack of transparency around the Quality and Equality Impact Assessment that should have been undertaken in advance of making any decisions on this issue  is very worrying, particularly given the substantial negative impacts that hearing aid rationing would have on large numbers of deaf people  across Devon.

We are relieved at NDCS the restriction on provision of NHS hearing aids has been abandoned in Devon, at least for now. However, we will have to remain vigilant going forward, not only in Devon but also nationally, in case other CCGs seek to address financial shortfalls with similarly crude and potentially harmful rationing measures.