Scope’s call of Lords Help Us answered as Government is defeated

Members of the House of Lords once again gave the Government a further bloody nose over proposals to cut legal aid.

Peers are in the final stages of scrutinising the Legal Aid, Sentencing and Punishment of Offenders Bill, which attempts to save £350 million by limiting the availability of legal aid. But so far the House of Lords is far from convinced.

Following three defeats on Monday night, the Government lost three more. Most significantly, the Lords voted to keep legal aid for people who need advice and support to appeal incorrect decisions about their benefits – most of these people are disabled.

This advice can be crucial in ensuring that disabled people receive the support to which they are entitled and, at a time of such a dramatic overhaul of the welfare benefits system, it is more important than ever before.

Scope and our supporters have been campaigning tirelessly on this issue – particularly calling on the Lords to save legal aid for disabled people in the innovative Lords Help Us campaign. And we were heard.

There were some particularly powerful speeches from Peers who demanded that the Government not take this vital advice away. Introducing the debate, Baroness Doocey said that “the decision to press ahead with the proposals… sends a very confused message to the disabled people that the Government have promised to protect.”

Lord Low added, “The proposal to remove legal aid for welfare benefits cases represents a triple whammy for disabled people”, while the Bishop of Exeter called on his own experience with his disabled daughter to call on the Government to save this legal advice, which gives “essential help to ensure that disabled people have access to the benefits and support to which they are entitled”.

This is a significant victory for campaigners, and we are now determined that the Government sits up and thinks about the impact that this Bill will have on disabled people.

However, the battle is far from over. The Bill will now return to the House of Commons where we can expect the Government to try to force through the changes. We saw the Government use ‘financial privilege’ to reject the changes that the House of Lords made to the Welfare Reform Bill, and we must work to keep up the pressure on MPs to make sure they realise how important this help and advice is to disabled people so that this not repeated.

We called upon Peers to help us save legal aid, and they did. Now we must ask MPs to finish the job.

Nic Hamilton documentary

Nic Hamilton and Trendsetters

The Trendsetters team is really excited to report that the filming Bradley and Kayne took part in with Nic Hamilton made it onto the TV!

Last night’s BBC1 documentary, Racing with the Hamiltons: Nic in the driving seat showed Nic visiting Scope offices in London where he met Kayne and Bradley and was interviewed by them. The documentary is very interesting and well worth a viewing, so have a look at it – you can find it on BBC I-Player.

Well done Trendsetters, you made it!

Racing With The Hamiltons: Nic In The Driving Seat

The BBC’s new disability season starts on Tuesday 6 March at 10.35pm withRacing With The Hamiltons: Nic In The Driving Seat.

Becoming a racing car driver isn’t easy for anyone, especially when you have cerebral palsy and your older brother is the world’s youngest F1 winner. In a sweeping one-hour documentary that captures the highs and lows of starting out on the racetrack, Nic hits the competitive Clio Cup to see if he has what it takes to make it as a driver. With his family on the track and brother Lewis on hand for advice, Nic is determined to prove that he can go beyond being disabled to kickstart a career as a driver. But his cerebral palsy and lack of driving experience means that he’s facing tough odds just to finish each race in one piece, let alone do well enough to continue beyond just the one tour. When a high-speed accident threatens to end his career before it’s really begun, it takes every ounce of Nic’s courage to get back in the driving seat. A moving documentary that looks at how one ordinary young man pushes beyond being disabled to take on an extraordinary challenge.

Young disabled people from our Trendsetters project met Nic Hamilton during the making of this documentary, and here’s what happened:

BBC documentary

Increasing numbers of disabled young people have been looking up to Nic Hamilton as a role model, and they were keen to explore this in the programme. They asked Scope if we could arrange for Nic to meet some young disabled people and to film this for the documentary. We thought the Trendsetters would be an ideal group of people to meet Nic so of course we said yes!

It was very short notice but we managed to get Bradley and Kayne to Scope’s head office to meet Nic, and be filmed interviewing him. Jamie Robertson from the Scope campaigns team came along too. Bradley, Kayne and Jamie had some interesting questions for Nic and asked him about his racing career, his adapted car, his experiences of growing up, school and bullying, and his relationship with his brother Lewis Hamilton, the Formula 1 racing driver. We found out that Nic and Lewis play a competitive car racing computer game when they are apart, and that both of them want to win!

Trendsetters project

Nic asked Bradley and Kayne about the Trendsetters project, and they talked about living with cerebral palsy and the attitudes of other people towards them. Nic told the boys that being different isn’t a bad thing, and explained how he deals with any challenges he faces with a positive attitude.

“A wicked day”

The filming took nearly two hours, and we are hoping that some of the footage will get used in the documentary… so look out for Bradley, Kayne and Jamie, they could be famous! Everyone enjoyed the experience, Bradley’s Mum and Kayne’s Dad got to meet Nic and chat to him over lunch and as Kayne’s Dad said afterwards, “What a wicked day!”

Kayne told us that he went go-karting a few months ago, but crashed his go-kart and didn’t want to go again. But after talking to Nic he felt inspired to go back to go-karting and he was getting ready to search the web for places where he could go and get involved.

Thanks to our London Trendsetters and their families for joining us at such short notice, and for proving to be such good interviewers.

Let’s hope we get lots more opportunities like this!

Kilimanjaro: I wanna stand with you on a mountain…

Guest post from Alan Gosschalk, Director of Fundraising

Last autumn while planning Scope’s challenge events, we realised that two departed on the same day – one up Kilimanjaro, the other to Everest Base Camp. We needed a Scope rep on each… step forward the fearless Fundraising Director, aka yours truly, for the former. To be honest, I didn’t really know what I was letting myself in for but others had enjoyed it and many had conquered it, so why not?

It started with a briefing session in October and a trip to the pub in December. Between them, I met half of the group of 20 going on the trip. People seemed nice enough. They were already doing well with the fundraising, arguably as big a challenge as climbing Kili itself, but people are resilient and determined. Toby and Anna raised £1,500 at a band night, Marz £630 by collecting at her town’s train station, Nat raised £46 packing bags at a well-known supermarket in Hendon and Ali did a sponsored run of 250km, the distance from Nairobi to Arusha, and raised £600. I went the easy route, generating £3,000 from eight very generous suppliers and a few friends.

Training was a washout. I did manage a few walks but was ill for three weeks from Christmas day on. I decided to rely on the residual fitness developed from a long distance walk last June! Our leader, Simon, pointed out that only extensive trekking at altitude can prepare you properly for Kili – result! I was no worse off than anyone else.

And so D Day crept up on us until we met nervously at the airport, all polite, maybe a little daunted. The next day, after the first sleepless night of many, we were in another world – hot, excited, eager to get going. And so began the daily ritual of packing and unpacking a variety of bags and rucksacks. Si (not the leader) broke the world record for the number of times a bag can be repacked in a one-hour period.

And then we set off, through lush vegetation, climbing 1,300 metres on day one. Within no time, we were singing, sipping water (vital) and telling jokes (poor). In no time, we became a team – the camaraderie was palpable. We were supported by the most amazing crew who sped by us daily to set up camp, cook our food, provide us with clean water, and even sort our toilets. We were in constant awe at their strength and stamina. Camping was a challenge for most – it was cold and uncomfortable. Food became fuel – though we didn’t want to, we had to eat… porridge, soups, stews – amazing food in the circumstances.

AMS (altitude sickness) affected many of us on day two as we plodded up to 3,900 metres. Diamox, the drug that counters its effects, worked pretty quickly. And so began the daily routine. Shiver through the night, ‘wake’, force down porridge and eggs, up and out in 45 minutes. We walked through amazing landscapes – past lava towers, moonscapes, past huge pineapple-like plants, scrambling up the Barranco wall – the variety was astounding. The one constant was the support that we gave each other. Inevitably people had low moments but they never lasted for long as others noticed and joked, sang, played 20 questions and asked inane questions. Well, do YOU know how long eggshell takes to biodegrade?

But we all noticed that it was getting colder, we were having to walk further and get up earlier each day and the mood became altogether more sombre as we were briefed twice about ‘summit night’. Simon’s view was that there was no point in sugar coating the truth – no one could possibly accuse him of that! We went to bed at 7pm (!) terrified, quaking in our sleeping bags. We were up at 11, cold and nervous. By midnight we were moving, slower than a snail due to the steepness and altitude. We trudged upwards, following a line of lights ahead. I counted every 100 steps, then started again. Trevor started singing along to his iPod – it was Coldplay, “nobody said it was easy, nobody said it would be this hard”. We’d put up with thousands of his jokes, mostly bad ones, but this was nearly the final straw.

There was no respite – when we did stop we always seemed to be in a wind tunnel. It was tough, the toughest thing any of us had ever done in our lives. Yet we persisted, on and on through the dark, until after six hours the sky started to lighten and we knew we weren’t far away. Gradually the sun came up. We got closer and closer to Stella Point until finally, we were there – hugs and tears, Jo cried for England. Then another 45 minutes before we got to Uhuru, the top of the highest free-standing mountain in the world and of Africa at 5,895m, almost 20,000 feet. Inevitably we’d plodded at different speeds and just behind us came Amrit, so determined having had to turn back last year. She had returned to complete the journey and she made it – mind over matter. We were all so very proud of her, the heroine of our trip.

We still had a long way down, three hours of scree then another two hours before a descent of 2,300 metres the next day – equivalent to more than twice the height of Snowdon. Then a celebration dinner, fun awards, too much Kilimanjaro beer and dancing to The Cult with Rik! Amazing.

Then finally back to reality in the UK but we’d all changed and learnt so much. We had made friendships that will last forever and share a unique bond. And we now know that we can achieve (almost) anything we set out to, if we’re determined enough. A life-changing trip in just six days – you can’t ask for much more than that. It’s a journey I implore you to go on.

Ain’t no mountain high enough… 

Alan Gosschalk, Director of Fundraising

Inspired by Alan’s experience? Sign up for one of our Kilimanjaro treks now!

Kilimanjaro trekkers

Cambridgeshire consultation with young people

Young disabled=

Liam is an Orchard Manor representative on the newly founded Cambridgeshire County Council’s (CCC) Transitions Partnership Board. The Board is a group of representatives from health, social care, young people’s services and the voluntary sector whose focus is to enable young people from the age of 14 – 25 to move successfully into the adult world by listening to their opinions and wishes for the future.

A consultation event (YIPPEE) hosted at Papworth Trust recently, was an opportunity for three of the new Orchard Manor representatives to meet up with representatives from different organisations. The day included consultation on the Cambridgeshire County Council’s draft SEN (special educational needs) paper, around the single assessment. The young people also discussed how they would prefer to make choices.

The YIPPEE event enabled the young people to vote on three topics they would like the Transition Board to consider during the upcoming year. These were communication and equipment, better work experience and leisure and transport. These topics greatly affect the lives of the young people at Orchard Manor and their input into these discussions will be invaluable so this is a great opportunity for them.

We look forward to hearing more about the work of the Board in upcoming months and will keep you informed on how the young people at Orchard Manor are influencing these decision makers.

Work experience a booming success in Meldreth

Meldreth work experience

Residents at Orchard Manor are part of a work experience programme set up last year to support the Meldreth Manor School reception. Students from the school are also part of the successful programme.

This experience has proved immensely popular with some young people whilst others have discovered it is not their calling.

Care staff support young people who enjoy the interaction with staff and visitors and have expressed a desire to work at the busy reception. Beth is one of the new receptionists. Besides welcoming visitors in a polite and professional manner and making sure everyone is signed in, Beth ensures the barrier is opened to let visitors onto the site and also promotes the sales of our apple juice (an annual fundraising endeavour). A task list with Makaton signs supports her to perform other administrative tasks, such as filling the photocopier with paper, doing some shredding, sorting out post and giving out messages.

Two young people who moved on from Orchard Manor to our first move on residence in Histon, Cambridge, also work as part of the work experience team and return to do their weekly shifts. This also gives them the opportunity to catch up with old friends.

Ensuring support for disabled people and their families

Government plans to radically overhaul Disability Living Allowance and replace it with a new payment, Personal Independence Payment, got the go-ahead last week. The changes will see people who were previously entitled to Disability Living Allowance having support withdrawn as new assessment criteria is start to bite.

Both DLA and PIP are designed to help disabled people pay for the extra costs their impairment incur, but I struggle to see how this can be the reality when an estimated half a million disabled people stand to lose support when new eligibility criteria come in to force in 2013.

Over recent weeks the papers have been full of disabled people’s stories and their concerns for the future, but we must not forget that many of these people have children (young and old). What will the impact be on their lives if their parents lose the support that gets them up in the morning?

The stakes have never been higher for disabled people and their children. Both my parents are disabled and I am desperately worried about what the future holds for us all if the new PIP assessment sees their support cut.

As DLA is my parents’ only source of income, the impact of any change to the amount they receive could have a devastating impact on the whole family. We only just manage to pay for the basics as it is, to put food on the table and a roof over our heads. I’m really worried about what the future may bring…

I’m determined to ensure the Government understands the impact of these reforms on families across the country. Time is running out to influence their plans.

The Government’s new PIP consultation is likely to be our last chance to have our say before the changes become law and I need your help.

I’m looking for other children (young and old) of disabled people to help me put together a joint response to these proposals that leave them in no doubt of the impact the changes will have. If you share my concerns please get in touch with any comments, stories or concerns you have that you think might persuade the Government to think again.

The issue of who gets what support and how this is decided has long since moved on from being a debate about public finances. It is now, in my opinion, a struggle to defend the human rights and the dignity of people most in need of our support and a debate in which we should all engage.

If you would like to get involved, please get in touch via the campaigns network. Email campaigns@scope.org.uk

Visit to Russell’s Farm in Duxford

Orchard Manor farm visit

Orchard Manor‘s skills tutor Tracey Demartino accompanied two groups of young disabled people to Russell’s Farm in Duxford.

The young people who attended the ‘Let Nature Feed Your Senses’ farm visits have learning difficulties (including autism) and are all wheelchair users. Many of the young people also have sensory impairments.

Two groups attended Russell’s Farm on two separate visits. The young people have complex and diverse needs and it was vital to stimulate all of their senses through sight, touch, smell and sound.

Russell’s Farm is an arable farm, and has an area that has been sectioned off specifically to allow for wheelchair users to access the crops – tall crops at wheelchair height such as barley, wheat and sugar beet allowed the groups to touch, feel and smell the crops.

Tracey explained: “The farmers were so thoughtful. Wheelchair access can be a challenge on a farm, but they had thought of everything – even putting down cardboard in areas where the ground was particularly uneven. They were also brilliant at presenting information in a way that made it accessible to each person. I was thrilled the young people were so engaged. They responded really positively to the environment. The farm visits were something that many of the young people had never experienced before and to see them engaged in something so different was great.”

For the young people, and particularly those with a range of impairments, the sensory nature of the visit was essential. As well as touching the barley and wheat straight out of the ground, they felt the grains crushed up, releasing a more concentrated smell. This gave them a multi-sensory experience of the various crops. They also had the opportunity to listen to the sounds of nature, to feel the wind and to benefit from the fresh air. Towards the end of the visit, it began to rain and the group absolutely loved it. Tracey said: “We all found being outside in the rain so funny, we hurried off to a big hangar to take shelter and so we could listen to the sound of the rain hitting the tin roof. A tractor was waiting and we finished our visit listening to the sound of the tractor’s engine, something the group had never heard before.”

The second group had a three-stage visit. As Russell’s Farm is local to Orchard Manor, the host farmer came to visit the young people eight weeks before the farm visit. She brought with her seed potatoes and all the necessary equipment for the group to grow their own potatoes. She talked to the group about how to grow them, what the plants needed to grow and why we might want to grow potatoes. Tracey said: “Everyone was really engaged at that point. Realising that crisps and chips are made from potatoes was very exciting.”

When the group then visited the farm two months later, they took their potato plants with them, and actually harvested them on the farm. They then took them back to Orchard Manor and used them in a cookery session with Tracey, to make potato wedges and potato salad.

Tracey explained: “This three-part visit really supported the group to consider and appreciate the story of food. Having the opportunity to be hands on by growing and harvesting their own potatoes was a really rewarding experience and really helped engage the group.”

Access to places of worship

Guest post from Angela Dobson

Imagine not being able to visit the places that are important to you. Imagine the frustration of trying to go somewhere and finding that you can’t get in while other people can, where the people who work there have no interest in helping you and end up leaving you out in the cold.

That’s what happened to me when I went to visit St Paul’s Cathedral in December.

The wheelchair-accessible side entrance to St Paul’s is usually locked, which is frustrating for anyone wanting to come in that way. As I planned to visit, I called up and told the cathedral I was coming, once several days before and again when I was on my way so that they could make the entrance available. However, when I got there, it was locked. The pavement by the front entrance was blocked off and I had to go into the road to reach the dropped curve at the front of the cathedral. My support worker went up to speak to a member of staff and was informed that there was no room in the cathedral. She was then ignored when she asked why the accessible entrance is always locked.

This is not the first time I’ve been unable to go into St Paul’s, where some of the people who work there have been very unhelpful. It is frustrating and dispiriting not being able to access such an important building that ought to be open to everyone. I think it’s vital that places of worship are made to be accessible to everyone who wishes to visit them, and many places could do more to make their spaces accessible to disabled people.

I’d like to hear other people’s stories about access to places of worship. To support my campaign, email campaigns@scope.org.uk with your experiences.

Scope Chair Alice Maynard responds to the Commission on Assisted Dying

The Commission on Assisted Dying reported back its findings and recommended that under certain circumstances people with terminal illnesses should be allowed assistance to end their own lives.

The Commission was chaired by Lord Falconer, a barrister and former justice secretary, and comprised of doctors, specialists in palliative care, an ex-police commissioner and a former president of the General Medical Council. It’s worth noting that Lord Falconer, as a policeman might say, ‘has previous’. In a past life he introduced an amendment to an act of parliament in order to change the law on assisted suicide. Indeed, it was striking how many of those on the Commission had pre-established views on the issue.

It’s also worth revisiting how and why the Commission itself came into being. It was funded by pro-euthanasia author Sir Terry Pratchett, who has Alzheimer’s Disease, and Dignity in Dying, and they both campaign for the law to be changed.

When I met the Commission – as chair of Scope – I did so in order to state our position on the issue of assisted suicide and to ask the Commission some questions about its role, remit and composition. We took this approach because the Commission has not been sanctioned by Government.

To boil their conclusions down, if you have less than a year to live, are over 18, have the mental capacity to make a decision, and have come to the conclusion entirely by yourself and voluntarily then, with the certification of two doctors, you should be allowed assistance to take your own life.

This debate touches on hugely complex and emotional issues. There are passionate voices on both sides. While the Commission acknowledged this in its research – and some of the discussions in the report are useful and interesting – most of the concerns raised by disabled people seem to have fallen by the wayside in its recommendations.

There is a lot about these recommendations that is unsettling and arbitrary.

The report acknowledges the concern that a change in the law might lead to people being pressured into taking their own lives – whether pressure from relatives, from professionals or as a result of more indirect prejudices about disabled people such as that a disabled person’s life isn’t worth living. While the report underlines the need for checks to ensure that people aren’t put under pressure to end their lives, there is scant detail on how this can be done. A fear of losing these safeguards one of the major concerns for disabled people. But the recommendations are paper-thin on this crucial point.

The report makes the distinction between those who are terminally ill, and those who are disabled. The Commission excludes from legalised assisted dying those with long-term impairments that are not terminal. So the point at which a disabled person becomes someone with a terminal illness is going to be an important consideration.

Many impairments affect people’s life expectancy to varying degrees. The line between a disabled person whose life-expectancy is shortened and someone with a terminal illness can often be blurred – and indeed determined by the person’s own approach to disability – making this distinction unworkable in practice. Prognoses change, people’s circumstances change, and it is notoriously difficult to predict how long someone has to live. To make matters worse, drawing the line at a year can increase the uncertainty of any such prediction.

The Commission rightly notes the importance that health and social care systems have in the lives of many disabled people. And sadly, when it comes to supporting disabled people and giving them the opportunity to live the life they want to lead, these systems often fall short. Many disabled people – including those with terminal illnesses – are not able to live their lives to their full potential, and in an era of swingeing welfare cuts that is likely to get worse.

These issues are important considerations and, though their consideration in the report is welcome, they do not come through strongly enough in the recommendations.

Much of my concern is wrapped up in how society views disabled people. Many believe our lives are not worth living or of no worth to society.  And in these economically constrained times, we can be seen as a burden on society and on our families and communities.  Sadly, professionals who are there to support us sometimes share those misconceptions about our value.  A recent report by the charity Mencap revealed that there have been 74 deaths in NHS care and there is on-going discrimination within the NHS of people with learning difficulties. This highlights an issue with the report’s ‘safeguards’, which rely heavily on the objectivity of doctors and social workers.

I believe that disabled people’s lives have intrinsic value and that, as disabled people, we should be able to get the support we need to live our lives to the full.  That requires protection in law, which is the ultimate safeguard from pressure to end our lives prematurely.

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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