Parliamentary Inquiry into PIP

Sally Etchells, Policy and Campaigns Officer, National Deaf Children’s Society

For a signed video of this content please click here!

Have you had a Personal Independence Payment (PIP) assessment? Did you appeal against the decision? Do you have views on what went wrong or what needs to improve?

If you have, the House of Commons Work and Pensions Select Committee wants to hear from you!

The committee is a powerful group of MPs whose job is to hold the government to account, highlight problems in the system, and make sure the government listens to real people who have been affected by issues such as benefits reform.

The committee has just launched a new inquiry into PIP and Employment Support Allowance (ESA). It is particularly focusing on the assessment stage of the process, but also Mandatory Reconsideration and appeals too.

It is so important that the voices, experiences and situations of deaf young people are heard by the people in power who can actually make a difference.

If you’ve been affected by PIP, we want you to fill out the short form telling MPs exactly what you think is wrong with the system, and how it can be improved for deaf young people.

The deadline for submitting evidence is Friday 10 November. You can find out more about the inquiry and how to submit evidence at this web page:

http://www.parliament.uk/business/committees/committees-a-z/commons-select/work-and-pensions-committee/inquiries/parliament-2017/pip-esa-assessments-17-19/

If you want to provide evidence in a non-written format, you need to contact the committee staff by emailing workpencom@parliament.uk

house of commons

“We must all do whatever we can”

Sally Etchells, Policy and Campaigns Officer, National Deaf Children’s Society

I recently interviewed Caroline and Anthony, members of our campaigns network and also parents to three children, Emily, Jack and Thomas. Thomas is ten months old and profoundly deaf. He also has a very rare condition called CHARGE syndrome which means he has additional needs. I spoke to Caroline and Anthony about why being a part of the campaigns network is important to them. 

 Why did you join the campaigns network? “We need to defend the services that are so vital to Thomas, our family and other deaf children. Thomas cannot tell people himself how much he needs, enjoys or how much he gets from the service so it is up to us to be his voice and to make sure that it is heard”. 

 What have you recently campaigned on? “We found out that Manchester City Council was planning to cut the Sensory Support Service for deaf children so, given how much we rely on this service, we knew we couldn’t stand by and let them do this without a fight.”

 Update: With the help of many parents and local campaigners, we managed to reduce the planned cuts in Manchester. We will now be working closely with the local authority to ensure deaf children in Manchester continue to get the right support.

 What kind of campaigning tactics did you use? “We responded to the council’s consultation and also wrote a letter to the council outlining how our whole family relies on the service. We also wrote to our local MP about the cuts and asked him to reject them on our behalf. He wrote to the council and supported us. Having your local MP on board really does make a difference.”

 What do you get from NDCS? “It is great that we can contact NDCS directly for advice or to answer any questions we have. They have travelled over to Manchester to meet with us and to gather feedback on how the changes affect us”.  

 Why should other people sign up to the network? “It is up to parents to stand up and fight for their children. We cannot allow our deaf children to be disadvantaged either now or in the future as cuts will affect children perpetually. We must all do whatever we can.” 

 Our campaigns network is made up of around 7,000 people who are passionate about campaigning to protect valuable services for deaf children and young people. The network is open to anyone and is completely free to join. Our campaigns network members take action on local and national levels to make sure services for deaf children are defended. Join the campaigns network today to be the first to find out about campaign actions in your area and to receive regular updates from the team:

http://e-activist.com/ea-action/action?ea.client.id=19&ea.campaign.id=45735&ea.tracking.id=TA

 

 

PIP’d Off Campaign Update – Justin Tomlinson meeting…

Jessica Reeves Campaigns Manager

Jessica Reeves, Campaigns Manager

Last week, after over 800 of our supporters wrote to him, we met with the Minister for Disabled People, Justin Tomlinson to talk about why people are so PIP’d Off with the Personal Independence Payments (PIP) process. NDCS Chief Executive, Susan Daniels and I met with Justin and representatives from the Department for Work and Pensions to explain how deaf young people are currently missing out on PIP.

We discussed the following issues, which you had raised with us:

YAB member Liam O'Dell meeting with Justin Tomlinson at party Conference

YAB member Liam O’Dell meeting with Justin Tomlinson at party Conference

  • Why so many deaf young people are missing out on PIP because the current guidance fails to recognise the support that many deaf young people require to communicate with their hearing peers
  • How face to face assessments are putting deaf young people at a disadvantage by placing them in unrealistic situations which do not take into account the difficulties that many deaf young people face in the real world, in noisey environments, trying to engage with non deaf aware people
  • The fact that deaf young people currently have to telephone to ask for an application form and how NDCS can help make sure that a digital claim process is available quickly and is accessible to young deaf claimants

The meeting was really productive and Justin was interested to hear about the issues that young deaf people are currently facing and he has said that he is keen to improve the system.

We will now be working with the Department of Work and Pensions to improve the current PIP guidance and improve deaf awareness at assessments.

I want to say a big thank you to all our supporters and Campaigns Network members without which this excellent result would not have been possible.

We will keep you posted!

Make it the law to close the gap

Katie Rafferty, Policy and Campaigns Officer Scotland

Katie Rafferty, Policy and Campaigns Officer Scotland

That is what the Scottish Government is aiming to do through their proposed Education (Scotland) Bill. The Bill contains fresh proposals that would require public authorities to report on how they are succeeding to close the education gap for the most disadvantaged young people.

The Scottish Government’s vision for children and young people is to make Scotland the best place in the world to grow up and learn. The wide attainment gap that exists between those leaving school with the best and poorest outcomes undermines that vision. The Bill, along with the Government’s Attainment Challenge Fund work, aims to tackle this issue.

How do deaf children and young people stand to benefit? With the right support, deaf learners can achieve the same outcomes as their hearing peers of similar ability. Despite this, deaf learners are among the lowest attainment groups in Scotland. This has been acknowledged through the recent Inquiry into the attainment of pupils with a sensory impairment.

However, the challenge lies in how the Bill defines “disadvantaged” and its focus on socioeconomic deprivation. Of course, there is a strong connection for all young people, including those who are deaf, between poverty and poorer educational outcomes.

However, poverty is not the only factor which can affect how well a deaf young person does at school. National and local investment into the things they might need at school: qualified interpreters, specialist teachers, good acoustics and effective technology, all have an important role to play. No matter how well off a family is, if something a deaf child needs is missing in their local community they won’t be supported to reach their full potential.

NDCS welcomes this ambitious new Bill, but we are calling on the Scottish Government to take the opportunity to address the multiple factors that cause attainment gaps, including Additional Support Needs. You can read our response to the committee here.

You can find out more about the Bill and follow its journey through Scottish Parliament here.

We’re PIP’d Off

Liz Partridge, Senior Policy and Campaigns Officer

Liz Partridge, Senior Policy and Campaigns Officer

Deaf young people are reporting problems with all aspects of the process to claim the benefit, Personal Independence Payment (PIP).

From having to use the phone to request an application form, to staff lacking deaf awareness and finally being denied the benefit, the process discriminates against deaf young people.

Unfortunately the Government decided to rollout PIP to all from July 2015 before fixing these problems.

PIP’d Off campaign

In response we have launched a new campaign, PIP’d Off. This campaign calls on the Government to improve all aspects of the claim process for deaf young people. As part of this campaign, we’re asking people to take action and call on the Government to halt the rollout out of PIP until it is fully accessible to all deaf young people. Almost 800 people have emailed the Government about this issue so far!

Here’s what some people had to say in their messages to the Disability Minister:

 “When I received a letter from Department of Work and Pensions, letting me know that my DLA was due to end this year and I needed to apply for PIP instead. On the letter, it was stated that I had to PHONE them to get an application form so I could get started on applying for my PIP. I am 26 years old and I had to ask my mother to make the phone call on my behalf. It is not acceptable to expect a deaf young person to ask others to make the phone call for them. This takes away their right to independence and privacy.”

“I personally have had to write to get a PIP form sent to me, only for my application to be dismissed as it is deemed I ‘cope’ well with my life long disability. My husband has had to ring for another form as since having my first child, who is also deaf, my deafness is causing more difficulties for me. The CAB have advised I should be entitled to PIP hence trying again. There needs to be Deaf aware specialists working on Deaf cases and applications to ensure those of us ‘coping’ with this hidden disability get the support we deserve.”

“My daughter, who is nine, is deaf.  I worry greatly about her future.  This present government appears to singling out the most vulnerable in society and it does not reflect well on your party,  Surely it is better to help young deaf people become contributing members of society, paying taxes, etc. rather than living a life dependent on government support?”PIP'd Off

“Whilst it is good the Department is taking action, I need to admit why was this not planned at the very start, please, in accordance to the Equality Act  and consulting with experts like us Deaf people? The process should have been accessible for everyone from the very outset. There is anxiety amongst young deaf people and their families/carers that the email trial and the development of the online system are still not complete.”

“Surely, the Government should be setting an example against any form of discrimination furthermore I suggest that this is a breach of disability access rights and disability equal rights. An obstacle that wouldn’t be allowed should it be a physical obstacle against someone’s access to buildings etc. There is no difference, an obstacle for a disabled person’s rights is still an obstacle and the Government are guilty of putting obstacles in place in this instance.”

“We have a number of children with hearing impairment at school and two in particular whose disabilities will be life long. Looking ahead to their future I would like to think that those governing our country will consider ensuring that there really is equitable access to welfare benefits for the disabled. These young people have to work harder than their peers to achieve the same results. Everything is a challenge including socialising. Please look again at the PIP for these youngsters – they have the right to independence in the same way that every young person without disability does”.

“It is imperative that equal access is a priority & the timetable for the rollout of PIP needs to be addressed to ensure any minority group is not disadvantaged. This has very serious implications & the Government has a clear duty of care to ensure all citizens are treated equally – not the case at the moment!” 

Take action

It’s clear that many people are not happy about this issue. Please have your say as well and take action as part of this campaign. Call on the Government to halt the rollout out of PIP until it is fully accessible to all deaf young people!

Find out more

Find out more about PIP’d Off and watch out for more blogs reporting on the progress of this campaign.

Get in contact

We would like to hear from you if you are a deaf young person (16-25) and have struggled to claim PIP. Please tell us your story by emailing campaigns@ndcs.org.uk

Closing the gap in Scotland

Katie Rafferty, Policy and Campaigns Officer Scotland

Katie Rafferty, Policy and Campaigns Officer Scotland

Last year NDCS published the Close the Gap report which highlighted the unacceptable education attainment gap which exists for deaf young people in Scotland. Data published in 2014 showed that almost 10% of deaf school leavers had no qualifications compared with just 1% of pupils with no Additional Support Needs. With the right support deaf young people can achieve just as much as their hearing peers. There is no reason why such a shocking statistic should be the reality facing as many as 3850 deaf children and young people in Scotland today.

A year on from our report’s publication the Scottish Parliament announced an Inquiry into the attainment of pupils with a sensory impairment. This marks real progress and commitment from Scottish Parliament and Government towards closing the education gap for every child.

The Inquiry was solutions-focused and asked: what action can be taken to close the education attainment gap for sensory impaired pupils? Here are our views on what were the most important recommendations highlighted by the Inquiry:

1. Address the challenges affecting the specialist workforce for deaf learners including the consistency of qualifications Teachers of the Deaf have and their ageing profile.
2. Improve early intervention and support in the early years and establish Scottish Government early years standards that can inform care pathways and provision following newborn hearing screening diagnosis.
3. Improve data about deaf children so that local authorities can plan the services they need more effectively.
4. Ensure school buildings are meeting high quality acoustics standards – benefitting all learners, not just those are deaf.
5. Explore how we can use new technology to better support deaf learners, and in some cases centralise learning to offer deaf young people more opportunities and higher quality supports.
6. Support the confidence and resilience of deaf young people to help them prepare to succeed in whatever they do when they leave school.

The Education and Culture Committee are due to publish their Inquiry report in September, and NDCS will be responding to its recommendations then. Watch this space.

For more info contact: campaigns.scotland@ndcs.org.uk

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.