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.

Employment Support Allowance appeal

Guest post from Panther

After having sent all the paperwork and extra medical evidence in for an appeal in November I still hadn’t heard anything so I spoke to the appeals person from my welfare rights team who had helped me fill the forms in yesterday and they advised me to ring the benefits people. Although the welfare rights person is acting on my behalf he said he wouldn’t be able to phone as I wasn’t with him to answer the security questions and give my permission for him to talk to them for me.

For 10 minutes yesterday I was left hanging on the phone while I waited to speak to an advisor, when I eventually got to speak to someone I was told that yes there was a note on my file that said I had requested an appeal and she could see the letter on the system that had been sent in dated 21st November 2011. The advisor told me it can take months for them to reach a decision when they look at your ESA claim again but she would put a link through to the department dealing with it and ask them to contact me to give me an update.

So this morning I got a phonecall from a DWP office in Hyde why I was getting a phonecall from an office in Hyde when I’d been told to send all the paperwork to Cosham I don’t know. The person at the Hyde office told me there was no note on the system saying that I had requested an appeal and that they hadn’t received any paperwork relating to it. They were going to put another link through to Cosham to see if they had the paperwork somewhere.

I then made another phonecall to the DWP on the number I’d rung yesterday and after another wait of over 10 minutes I was told by another advisor who I discovered aren’t advisors at all just call centre workers that the Hyde office are right there is no record of me asking for an appeal or any of the paperwork that I’d sent in to support my appeal. After a very stressful phonecall where I got very upset arguing how could one person tell me there were notes of an appeal being requested plus when I said a letter was sent requesting for an appeal and that letter was dated 21st November I was told yes I can see that, in less than 24 hours all these things have disappeared!!

I’ve now got an appeal form being sent out to me so have to arrange another visit from the welfare rights appeal person again and have been advised by the call centre that I can either send it back in the envelope provided or I can go to my local job centre. But even going to my local jobcentre isn’t straight forward I can’t just pop in there when it is done I have to phone the call centre back and make an appointment to go into the jobcentre because that is the only way I will be given a receipt for the paperwork I take in. How hard can it be for someone to write a receipt?

Apparently on this second appeal paperwork I have to state that this is a second request for an appeal and we want it accepted because the first paperwork was lost. I’ve got to do this because by only now finding out that none of the appeal stuff was received I am passed the time period I had in which to request an appeal.

This afternoon as I sat still thinking over all I’ve heard this morning I decided to try and speak to the Cosham office so I rang again and yet again was in a queue for over 10 minutes to find out that you can’t be put through to a specific benefit office it all has to go via the call centre who put a link on the system then asking that particular office to call you back!

By talking to this third person I learnt that at the call centre they only have access to certain things on the system they are unable to see any correspondence that has been sent in etc so she can’t understand how the first person I spoke to told me she could see the letter I was talking about.

I also finally had it explained to me why there were two offices involved, if I was a new claimant of ESA then my claim would be dealt with in Cosham that’s why letters I receive have Cosham’s address on it. But because I am moving from Incapacity Benefit to ESA it is dealt with by Hyde.

I did get told this afternoon that the person I’d spoken to this morning had put a link into Cosham and they have said they never received any of my paperwork regarding an appeal.

So now I’ve been advised that when I’ve filled out the appeal form and got any supporting evidence together to phone and make the appointment to go to the job centre and get them to fax it over to where it needs to go to as that will be the quickest and safest way of ensuring it is received.

I suggested to the call centre worker that perhaps letters of acknowledgement should be sent out for example when I do a DLA form I receive a letter to say they have received it and it should be processed in X number of weeks. At least if ESA did that I would of known within 2 weeks of send all the information in that my request hadn’t been received and could of acted on it sooner. I said this whole change over of benefits is stressful enough without having to deal with hearing different things from various people when you phone up and paperwork getting lost. The call centre worker agreed with me and said many of the suggestions disabled people had made the call centre workers agreed with but they were just call centre workers on behalf of DWP so couldn’t do anything

Now I just have to hope when I’ve filled everything in for the appeal that it is accepted and then wait for the outcome.

Panther

Sporting Inspirations Dinner 2011: an evening with cricket legends!

“Still buzzing from a great night thank you @scope everybody should look at what you are achieving and help as much as they can.” Simon Barton on Twitter

Thanks to all the very generous people who attended Sporting Inspirations Dinner at the London Marriott Grosvenor Square and who have raised over £100,000 for our work.

The record-breaking fundraising event was hosted by Scope Patron Alastair Stewart OBE, ITN’s news anchor. He introduced Scope Chair Alice Maynard who explained how the money raised would support our Face 2 Face parent befriending schemes that support 4,000 families of disabled children every year.

£500, she told us, can support one new family to be supported by networks of other parents who have been through similar experiences themselves.

Sarah Kiley was one such mother. Four years ago Sarah discovered that her son Philip had Down syndrome. She found it hard to cope. Friends were awkward and distant. She felt that she couldn’t return to work either physically or emotionally, and her self-esteem suffered as a result. Luckily for her, she found Scope’s Face 2 Face scheme, a network of parents with disabled children who support each other through their common experiences.

She says: “The guilt was replaced by hope. Face 2 Face was a special, very safe place where I could talk.” The experience enabled her “to wear that many hats that the parent of a disabled child must wear: physio, speech therapist, playmate and educator”. By attending courses on speech therapy and signing, Sarah developed the tools she needed to help her son, and Philip started mainstream school in September, something Sarah believes would not have happened without the support of Face 2 Face.

Now Sarah has become a befriender herself and she is passing on what she has learned to two new parents, one of whom, after two years, is about to become a parent befriender herself. This is the virtuous circle that parent befriending creates – £500 can continue to have an effect on future families, too.

Sarah closed by saying that her son Philip wants a cow for Christmas this year, and the Sporting Inspirations Dinner’s special guest, England cricket vice-captain Alastair Cook MBE, who lives on a farm, said he would be happy to oblige!

Despite having a net with England batting coach Graham Gooch at 8 a.m. in Finchley following the dinner, Alastair very graciously agreed to stay out late to be the guest of honour of Jonathan Agnew, BBC’s cricket correspondent and the senior member of the award-winning Test Match Special team, who braved the last train home and provided a running commentary on his Twitter feed.

They discussed Cook’s record-breaking 36 hours of batting in Australia, England’s South African middle order, Geoffrey Boycott, the Mitchell Johnson song, the One-Day Internationals in India… (that’s enough, Ed.)

Former England Test captain Chris Cowdrey had a fine innings as auctioneer, raising nearly £20,000 from eight lots, which included a tour of the ITN studios, a large scale replica of Jenson Button’s Formula One car and a one-week stay in a luxury villa in Barbados!

The silent auction had many fantastic items, including MCC cricket coaching for your school, afternoon tea with Cherie Blair at Brown’s Hotel in Mayfair, a signed photo of the Downton Abbey cast and several amazing holidays and short breaks. It raised just over £20,000 to bring the total for the event to over £100,000 – that’s enough to support 200 families like Sarah’s, a truly life-changing amount.

For further information or to book your tables or tickets for future events, please contact Sue Dorrington, Special Events, Scope on 020 7619 7271 or email her.

Many thanks to Isabel Hudson, the chair of Scope’s Business Development Board and the Sporting Inspirations Event Committee, who helped to organize this fantastic event on her birthday!

Shining the spotlight on cinema accessibility

Our Campaigns Department has teamed up with the Muscular Dystrophy Campaign’s Trailblazers to try to tackle the issue of cinema access, following two separate campaigns run by the charities earlier this year.

The two campaigns had led to approaches from the cinema industry to discuss our respective concerns so Scope and Trailblazers have been working together to present a series of joint proposals to the industry.

We met with representatives from the three largest UK cinema chains – Odeon, Vue and Cineworld – as well as the Cinema Exhibitors Association, the body representing more or less all the cinemas in the country.

There was a very positive atmosphere in the room and while the disability charities obviously approached the issue of access from a different perspective to the industry, there did seem to be a real willingness to listen and learn on both sides.

The topics discussed were influenced directly by what you told us you wanted to see improved at a local level and included physical access to cinemas, the availability of access information online, and the attitude of staff towards disabled people. It was great to hear about some innovative things the industry is doing to improve disability access, but also to quiz them directly about some of the things you’ve told us they could do better.

The suitability of wheelchair spaces in many cinemas was an issue you, and therefore we, were keen to address. The industry said that accessibility in their cinemas was a top consideration. In planning new buildings they said they always tried hard to meet their obligations under the DDA (now the Equality Act). However, they said that even with new buildings there were still issues of the most cost-effective way to use space. Basically, this means that they felt making better provision for people using wheelchairs would come at the expense of the overall seating capacity of the cinema and that they had to balance the need for inclusion with their business need to maximise customer-generated income.

We told them about some of the difficulties you been having with awkwardly-positioned seating at the front and sometimes the extreme edges of the cinema. They said that the industry tries to offer flexibility in seating but that in some older locations this was not always possible. They said that they recognise the preference for seating in the middle of the auditorium to avoid a strained neck rather than at the front but said that the arena-style seating of many modern cinemas make this impractical and expensive to implement (this is partly because the gradient inside the auditorium can be very steep). We asked whether it would be possible for them to include ramps up to the middle area of seating. They said that this would involve taking out seats which would have implications on the numbers of tickets they could sell.

On the issue of providing tickets for carers and support workers, the news was more positive. The CEA card allows for disabled people to purchase tickets for carers at a reduced rate. The industry said they are keen to expand the scheme. We highlighted the importance of online booking facilities in order to make the use of the CEA card easier. Online booking for CEA card users is something that Cineworld already offer on their website and the other industry representatives were keen to follow suit if this approach proved successful.

Many of you told us that you found it difficult to find out online which cinemas and screens were accessible. We said that it was important to improve the access information so that disabled customers can have all the facts ahead of their visit and can avoid the ‘awkward unknown’ or a wasted journey. They said the industry is keen to improve the access information online and are looking at ways to improve the way it is presented. We will keep you posted as to how they get on.

The attitude of staff towards disabled customers was another issue you said was important. We highlighted this and they said they were keen to make sure every customer enjoyed a great experience in their cinemas. We suggested that it might make their training more ‘real’ for their staff if they were able to involve disabled people in the training sessions.

They said they were committed to offering high-quality disability equality training to all of their staff at every level and that they would work with us and disabled people’s organisations to improve its quality and relevance.

Overall the meeting itself was a positive one. It’s good to hear that the industry is committed to addressing your concerns. We will continue to work with them to ensure they understand the importance of accessibility to disabled people and will keep you updated as to how we get on. In particular, we will be pressing for changes to be made as quickly as possible as many disabled people are missing out on the full social experience of going to the cinema right now.

Talking with the industry is only the first step, we are absolutely committed to making sure that they turn words into action, but we need your experiences and your stories to help us do this. Keep sharing your stories with us atcampaigns@scope.org.uk

Scope celebrates UK Disability History Month

As part of UK Disability History Month, Scope has worked with British Library Disability Voices to include over 200 hours of recorded testimonies by people with cerebral palsy, aged 50 and over, recorded for our Speaking for Ourselves: an Oral History of People with Cerebral Palsy project.

This two-year partnership with the Heritage Lottery Fund trained 16 disabled volunteer interviewers to record the life stories of people living with cerebral palsy, and now these life story interviews are available to listen to online.

Disability Voices contains unique and moving memories from disabled people recalling childhood, family life, education and work experiences. There are insights into their treatment by medical professionals, the daily challenges of the workplace and of the attitudes of wider society, and their involvement in disability organisations and communities.

As well as providing useful learning material, Disability Voices expects to challenge and inspire a wide range of users: to help people relate their own experience to others in similar circumstances, but also engage with those who have little knowledge of the lives of disabled people in our society.

Ann Pridmore was one of the volunteer interviewers on Speaking for Ourselves: “It’s an exciting and valuable project. Why? Because disabled people are not included in social history. As a disabled woman with cerebral palsy this opportunity to record our history is long overdue.”

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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