Your benefit questions answered

We’ve teamed up with a number of benefits advisers from a local DIAL (Disability Information and Advice Line) to answer your questions about recent benefit questions:

What happens when your 64? – Linda

Hi Linda,

If I understand your question correctly you are asking what happens if you are over the age of 64 when the new Personal Independent Payment (PIP) comes in? If you were already in receipt of DLA and had reached the age of 65 on 8 April 2013 then you will remain on Disability Living Allowance and not be subject to the new PIP benefit rules.

If on the other hand you are under the age of 65 on 8 April 2013 then you will be subject to the new PIP rules and the new criteria is more restrictive than the DLA criteria. This role out will happen from October 2015 for majority of DLA claimants. With PIP there are only two levels of the care component as compared with three levels of DLA (the lower rate has effectively been abolished). The two rates of the mobility component will remain but with different criteria. Just to complicate things even further if you want to apply after the age of 65 and it is your first application then you will have to apply for Attendance Allowance rather than PIP as this benefit is staying the same.

Will the change from DLA to PIP affect claiming for my son who is 10 who has ADHD and Autism? – Rachel

Hi Rachel,

The good news is that your son will not be affected by the PIP as children under 16 years of age will remain on Disability Living Allowance. You will be “invited” to fill in a PIP form when your son nears the age of 16. We would always advise getting help to fill in this type of form from someone who understands the criteria and the case law that will have been built up by this point.

Will I still be receiving the same amount that I was with the Disability Living Allowance or is there going to be reduction in what I receive with this new benefit? – Sean

Hi Sean,

This is a good question that many people are asking. Very often with a change to the benefits system something called “transitional protection” applies, this basically means you will be no worse off with the new benefit and will be protected against any negative impact. Unfortunately with PIP and DLA no such protection has been written into the system and the majority of people will need to make a new application for PIP unless they are over 65 or under 16 years of age. It’s difficult to go into more detail without knowing your personal details and looking at them against the new criteria.

What is PIP? Is it just a new a name or is DLA being scrapped? – Amanda

Hi Amanda,

DLA is being abolished and replaced by Personal Independence Payment (PIP) for adults of working age. PIP has its own criteria that differ from the current DLA criteria. DLA has three component for care and two components for mobility. Under the new PIP criteria the lowest rate of care is no longer available. In addition the difference between night and day care no longer exists. The walking distance for PIP is more restricted than the present rules.

We would advise anyone who is invited to apply for PIP to get assistance with completing the forms from an advice agency who is familiar with the new rules. If you are on DLA then your payment will continue until you have been assessed under the new PIP criteria and a new decision made. Most people who do get an award for PIP will be re assessed on a regular basis to make sure they still meet the criteria.

When do we need to start filling the PIP application? My son’s DLA runs out in 2015 –  Jenna

Hi Jenna,

When your sons DLA is starting to run out as he approaches the age of 16 you will automatically be invited to make an application for the new PIP, this will be around five months before his birthday. As your son is under 16 at present the DLA rules will still apply, even if he is subject to a review. We would advise you to keep copies of educational statements and, care plans and medical reports as these may come in useful when you do make the PIP application.

If you have been awarded DLA indefinitely, do you know what happens when it changes to Personal Independent Payment? – Debbie

Hi Debbie,

Unfortunately your indefinite award of DLA is not recognised by the new PIP benefit. The indefinite DLA award meant that no review date had been set for your current award but it is not a guarantee of continuing payments. The Government has anticipated that indefinite awards of DLA will start to be looked at from October 2015 onwards, unless you have a change of circumstances before then. You will be invited to make an application for PIP, and any award will be based on assessments under the new criteria.

When filling an assessment form it is important to remember that you need to be defining what your difficulties are with getting around and personal care, not saying how you manage. One of the biggest reasons for people getting turned down for disability benefits is that they don’t give the decision maker enough information. Under PIP you will also be called for an assessment and it is again very important to highlight the difficulties you have.

I have just been offered a four-bed house which is adapted for my son Aaron who has cerebral palsy. He has to have a bedroom of his own, but our local council say we will have to pay a bedroom tax as it is classed as a spare room – but it won’t be because Aaron will be in it! I truthfully do not understand this at all – David

Hi David,

I am assuming that your local authority is working on the principle that your son is of an age that he can share with a sibling (two children under 10 years of age either gender can share or two children under 16 years of age same gender). However, the good news is that the Government has changed the way they view disabled children sharing bedrooms and a Court of Appeal decision (HB/CTB U2/2013) has led to a change in case law. Local authorities have been instructed that children who have severe impairments should in certain circumstances be allowed a bedroom of their own. This law changed on 1 April 2013 so it is worth getting back in touch with your council and asking them if they have applied this case law in your particular case. Good luck!

What are the timelines for the change to the Personal Independence Payment?

  • 8 April 2013 – New claims for PIP start with the Bootle benefit centre. Bootle will handle the claims from areas including Merseyside, North West England, Cumbria, Cheshire and North-East England. People in these locations will be the first to claim PIP.
  • 10 June 2013 – New claims for PIP from the rest of the country.
  • October 2013 – The re-assessment of current claimants will start – but only if there is a change in circumstance or end of an existing award.
  • The majority of existing claimants won’t be reassessed until 2015.

Care and Support Bill

A few days ago I came across a quote from a young disabled woman that I simply couldn’t believe.” Emma, from Cambridge, said, “Not getting the support I need has meant my life is on hold. I have no routine, I feel socially isolated, lonely and of no value to society. I’m only 24; I feel 84.”

Emma is talking about the effects a lack of proper social care support has on her life. The idea of someone so young feeling that she is of no value to society is a terrible state of affairs, but sadly, Emma is not alone.

Today there are hundreds of thousands of disabled and older people who are not getting the social care support they need to live their lives.

Social care in crisis

It’s fair to say the social care system is on the brink of collapse. Crucially, in a matter of weeks, the Government will be making major decisions about the future of social care when the Care and Support Bill will finally be brought to Parliament.

It comes at this pivotal moment in the reform of the social care system that I have the honour of taking over from Simon Gillespie, Chief Executive of the British Heart Foundation, as the new Chair of the Care and Support Alliance.

At Scope, our number one priority for a long time has been seeking to persuade the Government to ensure that disabled people get the social care support they need to live independent and active lives.

Care and Support Alliance

As Chair of the Care and Support Alliance, a coalition of over 70 different organisations representing older and disabled people’s concerns of the social care system, it will be a huge privilege to be equally championing the views and concerns of the millions of older people and carers also affected by these reforms.

It’s worth reiterating why so many diverse organisations came together to form this powerful alliance on social care in the first place.

Years of chronic underfunding by successive Governments, followed by unprecedented cuts to council budgets, at a time when there is growing demand for care services, has put the social care system into crisis. Councils have been forced to ‘manage’ the numbers of people they can commit to providing social care support for. In reality this means the vast majority of councils today only provide state-funded social care support for those judged to have at least “substantial” care needs.

Effects of care crisis on disabled people

This has serious implications for disabled people and older people who only have moderate or basic needs and for the millions of carers left to pick up the pieces.

But the Care and Support Alliance has a much bigger role to play than just highlighting the problem. We can provide solutions. It is clear to us that setting eligibility for state-funded social care at “moderate” needs would guarantee disabled people and older people an active and independent future.

To that effect, my mandate as the new Chair is clear.

It’s never easy working in coalition. But it is testament to the sheer scale of the crisis engulfing older and disabled people that our sector wide coalition, representing the diverse views of disabled people, older people and carers, has been able to coalesce behind this one crucial issue with one clear solution.

Of course there will be significant cost implications and many people will ask if we can afford this in a time of austerity.

A Joint Committee of MPs and Peers scrutinising the draft Care and Support Bill recently warned that “restricting support and care to those with the highest levels of need will become entirely self-defeating, because it shunts costs into acute NHS care and undermines interventions to prevent and postpone the need for formal care and support.”

For that reason we’re asking the Government to be bold and make a brave choice when it comes to social care. To solve this crisis once and for all by investing in a system that ensures older and disabled people with moderate needs get the support they need to live a life with dignity; to have the support they need to get up, get out, and take part in daily life in their communities.

When faced with stories like Emma’s – can we really afford not to?

What do you use DLA for?

On Monday, the Government will start the process of replacing Disability Living Allowance (DLA) with a new benefit called Personal Independence Payment.

We asked our Twitter followers what they use DLA for. Here’s what they said:

If you receive DLA we want to hear about the difference it makes to your life.

An enjoyable experience

This blog entry comes at the end of our first mentoring and befriending training course. It is compiled from the feedback of those who took part, and I’d like to say a big thank you to them for their attendance and commitment. We were delighted to hear it had been “a very enjoyable experience”!

Trainee mentors felt the best things about the course were “the tutors, staff and people I have been training with” and the “friendly atmosphere and common sense approach to the subject”. They felt “very well prepared” for their role as a mentor, but also acknowledged that they would only really know that the role was right for them when the work begins.

One trainee said “the course has given me a real sense of purpose. I always look forward to coming and my personal confidence and self-esteem has grown a lot.” This was, of course, excellent news as building confidence is essential to the success of the project. Other mentors have acknowledged, in planning meetings and the steering group, that confidence is the starting point for so many things, such as joining groups and embarking on new experiences.

It was also good to hear that the course had been challenging, too. Mentoring is not an easy option, and our training course tries to reflect that (without putting people off). Participants said that had learned things about their own communication and listening skills, and interpersonal relationships. Listening is a key part of the mentoring relationship and something we focus on in the training – someone once said to me “are you listening, or are you waiting to speak?” and this has always stayed with me as a good example of how we probaby all need to learn to listen more actively!

Meanwhile, we are hoping that we’ve seen the last of the snow, as the bad weather has undoubtedly impacted on the project. A number of the groups we wanted to attend to promote the project have been cancelled.

I will leave the final comment to one of our trainees:

“I am looking forward to contributing whatever I can to Scope and the mentees I will be given to befriend and empower. I am very happy to have been given this opportunity. Thanks to all of you for making this possible”

Our Generation is a free mentoring and befriending service that offers one-to-one support for disabled people and people with long-term health conditions over the age of 50.

Has the sector run out of steam?

From April disabled people – already struggling to make ends meet – will lose some £28 billion of financial support to help them with the extra costs of living in a world not designed for them.

This is on top of a squeeze in the support they receive from councils to do the basics such as getting up, getting dressed and getting washed.

Against this backdrop it’s no surprise that people are wondering what happened to the ‘Paralympics effect’.

It’s a bleak picture.

Where does this leave organisations like Scope and others, who exist to try and make this country a better place for disabled people?

Last year the Guardian’s David Brindle said that disability campaigners had come to a cross roads.

He suggested the Disability Movement – which has been leading the fight for equality for more than 40 years – might have run out of steam, having largely won the arguments for full civil rights and the right to live in the community, in principle if not yet in practice.

It feels like the right time to revisit this point.

I don’t agree that the Movement has run out steam. If anything, there is increased energy and drive.

For the first time in years disabled people have been taking to the streets. Campaigners such as the We Are Spartacus movement, Pat’s Petition andDisabled People Against Cuts, who use social media to connect, inspire and organise have re-invigorated campaigning.

The energy exists. For me the question is where to direct it?

The cuts are a natural galvanising point – some disabled people will be hit by six benefit cuts simultaneously – decimating their income and their life chances.

But it has to be about more than cuts. Disabled people have spent decades campaigning to be treated as citizens with rights and a contribution to make. The cuts agenda has revived the discredited deserving and undeserving poor labels that we rejected years ago and does nothing to advance disabled people’s citizenship.

At the same time it’s also too simplistic to say that we just need to build on the Paralympics effect. The Paralympics were a break-through moment – disabled people have never been so visible, disability has never been so openly discussed and celebrated. But we need to be asking how we can make all disabled people – not just gold medal-winning athletes and TV personalities – more visible and better understood.

One thing we do know is that we can’t change anything without working side-by side with colleagues in the Disability Movement, in Government, in Opposition and local government and the wider sector. It’s not always easy. At the heart of this has always been a healthy debate.

In this spirit I’d like to pose four questions. I’ll say upfront that I don’t have the answers. But I think it’s time to start the debate: #disabilitywhatnext?

  1. How do we make the general public care? A recent survey showed people’s support for disabled people receiving state support is dwindling. Disability is an increasingly common experience, it can happen to anyone, and with an ageing population, increasingly, it will. But it doesn’t resonate with the public. We can’t convince the Government to be more proactive and thoughtful if this issue doesn’t echo from their focus groups.
  2. How do we make politicians see disability as a pressing political issue? Disability is not a uniform experience, it affects people differently. The old distinctions between those who can work and can’t, those who need support and those who don’t, are no longer fit for purpose. As more and more people live with disability of some sort, our structures need to reflect this experience in a more sophisticated and personalised way. We can no longer afford to write off disabled people as scroungers or dependents with nothing to contribute.
  3. How can we mainstream the Paralympics effect? We saw a new openness when it comes to disability. People stopped walking on egg shells. They asked questions. They began to think differently. How do we build on this to lift the fear of talking about disability and creating spaces where honest but respectful conversations about bodies, minds and difference can happen?
  4. Despite the new voices the numbers of people who self-identify as disabled and are actively involved in advocating for improved life opportunities for disabled people remains small. There are 11 million disabled people in the UK. Where are they all? At a time when disabled people’s quality of life is threatened like never before, how can we do to get more people involved in the political debate?

To answer these questions we need to put aside old rivalries and come together, disabled and non-disabled allies alike, to forge a new vision of what life should look like for disabled people in 2013 and beyond. The consequences of not doing this don’t bear thinking about.