Please send out to anyone you know who’d be interested.

http://the-hermeneutic-of-continuity.blogspot.com/2011/02/priority-trust.html

Wow! What a week. Firstly, since my BBC breakfast appearance and more importantly the blog on the DLA consultation. General feedback from the ‘one month before heartbreak’ blogswarm has been positive. It received coverage on the following links, as only a starter and taster:

http://www.guardian.co.uk/commentisfree/2011/jan/18/disabled-protesters-one-month-before-heartbreak
http://www.goodaccessguide.co.uk/news/info.php?refnum=544
http://www.benefitsandwork.co.uk/news/latest-news/1285-protests-against-benefits-cuts
http://www.communitycare.co.uk/blogs/service-user-voice/2011/01/disabled-people-and-service-users-will-be-heard-we-will-be-listened-to-ombh.html#more
http://liberalconspiracy.org/2011/01/17/does-the-broken-of-britain-campaign-need-celebrity-support/

Thanks to Emma (TweetHandle: @funkyfairy22) for providing this information. Also Kaliya (TweetHandle: @Bendygirl) was on Talk Radio Europe speaking about Broken of Britain and the great campaign http://thebrokenofbritain.blogspot.com/2011/01/benefit-claimants-fight-back.html. Lets hope the government have taken note of this and reconsider their policy decisions around DLA next month, and indeed on disability issues generally!

And the BBC article……….

http://www.bbc.co.uk/news/uk-12176854

This commitment is even more inspiring given that Anna, who has cerebral palsy, needs a powered wheelchair to provide her with independent mobility.  Her previous power chair, provided through local contacts would break down frequently, often leaving her stuck for several hours until her parents could arrange to pick her up. In March, Priority, working with Newlife funded a new powered wheelchair that will provide Anna with the independence she needs to get on with her life.

The new wheelchair is slimmer and better fitted to Anna. “It’s letting me do what I want to do and now I can chase the children at school!”

This September Anna is due to start her degree course in teacher training at Canterbury University and is very excited about going. However her local authority has still not confirmed that they will fund the carer that she obviously needs to be away from home and live independently. As her Mother says “the fraught experience of trying to establish how Anna can access support at university has served to show huge gaps between what the government promotes and how that is delivered at any local level.” Despite this Anna is confident that things will work out, but seems calmly resigned to the fact that there will always be a struggle when it comes to accessing the correct support that she needs.

This reaction comes from many frustrating experiences. At 4 years old, when applying for a wheelchair from the local authority, her mother was told “but she’s terribly young, does she really need one?”. Later, after an application for a wheelchair had been with the local authority for 18 months, they were told it had been ‘lost’.

More recently, when deciding which university to attend, Anna came away from one feeling that she just wasn’t welcome. They told me the course was “very stressful, obviously trying to put me off”. Canterbury however seems to be different, with good facilities to support Anna’s needs. But this simply highlights the different levels of service provision around the UK.

Anna’s mother expects this to continue: “Children’s services, despite all their own weaknesses, do at least have the impetus of statutory requirements (children have to go to school, must be cared for etc). Once you come under the ‘Transition’ team it seems you become a whole different ‘problem”.

The new wheelchair is allowing Anna to look to the future. Her Mother is delighted:

“Your donation, via Newlife, has made a real difference to us and the wheelchair makes it possible, in the vital, practical sense, for Anna to achieve her ambitions.”

It also meant that Anna could to go to this summer’s Glastonbury festival, where she saw many of her favourite bands, including Stevie Wonder. Fortunately the good weather meant there was little of the infamous Glastonbury mud to get stuck in!

Hannah already has a tricycle which she received in 2003 and which she absolutely loves but she has now outgrown it and it is also extremely worn on several parts such as the knee supports. Following a major operation in 2005 a trike is more important than ever to Hannah because she now has one leg shorter than the other and a trike not only allows her to exercise and keep fit, but also helps to straighten her leg which twists frequently.

Hannah’s Mum explained that a new tricycle was vital so that she could share outdoors activity with her daughter and because of the physiotherapy benefits.  She also mentioned that her daughter sleeps better when she has been on her trike and is less restless.  Perhaps most importantly, a trike provide happiness and fun and this she summed up by saying: ‘it brings a smile as wide as the ocean to her face.’

Priority , working with Whizz-Kidz was able to fund the trike, which Hannah received August 2009 and she absolutely loves it as you can see from the smile on her face.  The pictures below were taken in December 2009 and show Hannah on her beloved red trike.  Speaking of the difference, the equipment had made, Hannah’s Mum said:

“Hannah is very severely disabled and the bike provides one of the only ways for her to get exercise. It is also a great way for her to meet other children – kids who would be put off by her big wheelchair will come up to her when she is on her bike and ask questions or just admire it.”

Since his accident, Max has learned that, to achieve full inclusion of disabled people in society, 2 barriers need to be overcome: firstly, physical, and secondly, the barriers in peoples’ minds. This has led Max to become involved with many disability-related organisations, in an attempt to overcome real obstacles and prejudices.

Max’s fitness regime (using a reclining exercise cycle) led him to the idea of the Everything Is Possible In Life Cycle – a 714 mile-long campaign, riding a recumbent trike, from Aberdeen to London. He has been training since 2002 – most recently near his London home, on a specially adapted 3-wheeler to get used to cycling with traffic.

Max sees this as an opportunity to change how disabled people are perceived, and to begin to shift the attitudinal obstacles that he comes across daily, by communicating his positive can-do message to the public. So, he will be encouraging the public to ride a leg of the journey with him to demonstrate perception-changing in action.

Max Burt says “People with disabilities are usually perceived as having the common experience of being ‘less able’. This is perhaps the only reason why such diverse people are lumped together into one group called ’the disabled’. After all, what does a blind person have in common with a wheelchair user?

I hope that my journey, as well as highlighting the positive common experience that disabled people share in overcoming obstacles, will also celebrate the often ingenious abilities that disabled people have, and demonstrate that everything is possible. Now, I want to get this message across to as many people along my route as I can”.

Pablo was clinically diagnosed with infantile epilepsy at an early age and this has led to his severe developmental delay. He is unable to weight bear or walk without specialist equipment or assistance and because he has no speech, he communicates by making noises, eye pointing and touch.  Pablo is also prone to frequent and repeated infections due to a blood disorder.

To enable Pablo and his family to go out more and access parks and countryside, The Priority trust, working with Newlife, funded an all terrain buggy for Pablo in the summer of 2009. The buggy also provides him with the postural support and positioning he requires.

Pablo’s Mother says: “He’s happier and more content. You can see in his face and body language that he’s much more happy and confident outdoors, which he loves.”

His parents are extremely pleased with the buggy and the difference it is making for Pablo and the family. Pablo is now much less isolated. Before, with his wheelchair, he needed to be indoors or on flat surfaces. The buggy is much more manoeuvrable and allows him to interact better with his brothers, enjoy parks and be outside more. As a family, they’ve also been on holiday together and Pablo was able to join family walks in the countryside.

Pablo’s Father adds “Having the all terrain three wheeler has enabled Pablo to enjoy and be able to access places that otherwise would have been impossible…without this buggy he would have been isolated and unable to join in many of the family outings.

This buggy has allowed Pablo to have experiences and enjoyment that he would have totally missed otherwise.  We are so certain that many of these outings have brought him immense happiness

We cannot emphasize enough how much this equipment has made a difference in Pablo’s quality of life”.

In 2007 Amelia was diagnosed with Spinal Muscular Atrophy Type II. This neuromuscular condition affects people in different ways. Amelia was able to walk on her own until she was 18 months old, when her condition deteriorated and she now needs a wheelchair to move around independently.

In June 2009 Amelia was given her ‘Koala’ Permobil powered wheelchair, through the support of The Priority Trust. As soon as she received the chair, she worked out the controls and just got on with using it. She is now able to move around at home, move toys from room to room and push her doll in its pram.

Amelia goes to nursery several days each week and ‘walks’ there herself and interacts normally with her friends. Her Mum said “we were worried how she would get on at nursery, but she just went straight in and got on with it.” The riser facility allows her to sit at table height with her peers and take part in all activities. Later this year she’ll start full-time school and can’t wait! The ‘Koala’ will significantly improve her life experiences at this crucial developmental stage.

Her Mum adds “With her ‘Koala’ Amelia can play with her friends, choose where she wants to go and scare her parents by driving too quickly! The riser facility means that she can press the button at the pedestrian crossing, choose food in the supermarket and reach her toys.”

Hanna was born with Cerebral Palsy and while she has some use of her hands and arms and can feed herself she cannot mobilise unaided unless she is crawling and this she can do for short distances.

She loves her mainstream school but as she has got older it has become more difficult for her to join in and feel involved with the other non-disabled children in her class.  Hanna even told her mum that she wanted ‘to go back to class R because the children in class 1 can walk.’ To help address this, Hanna’s Mum applied to Whizz-Kidz for a specially adapted tricycle so that her daughter could get around independently and keep up with the children.

Hanna’s needs were assessed to make the required adaptations, such as supportive seating so that she could be safe when riding and foot-sandels to maintain her feet in the appropriate position when pedalling her trike as well as a push pole to guide the trike if needed.

Thanks to The Priority Trust’s generosity, Hanna’s was able to receive her trike in May 2009 and as these pictures show, it has made an enormous difference to her life and she is getting full use out of it at home and at her school.  This gives her the opportunity to exercise her legs which is beneficial for muscle tone and her general health.  Best of all, thanks to The Priority Trust, Hanna is able to enjoy the freedom of independent mobility and play and have fun with her friends.

Amy’s family approached their local wheelchair service but they were unable to provide Amy with a powered indoor/outdoor wheelchair which would meet her needs.

For Amy to live an independent and active life she needed a wheelchair that met her social, educational and clinical needs. Through the support of The Priority Trust Amy has recently received an indoor/outdoor chair with a riser function called an Otto Bock. The riser function is important because it means that Amy can to raise herself up when she wants to, have eye contact with her peers and reach things like equipment at school.

The chair is ideal for use at school where it gives Amy her independence, but it also allows her to get out and about in the village where that she lives and enjoy the nearby countryside with rough and hilly terrain

Amy’s Otto Bock has already made an enormous difference and the fantastic news is that it will hopefully continue to do so for a long-time to come as it should last for five to six years. Speaking about the difference, Amy’s parents commented:

“Amy’s Wheelchair has certainly given her a new found independence, it’s a pleasure to see her doing the things she wants to do under her own steam.”