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

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

In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.

For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.

So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.

It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?

If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life.

Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.

So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.

What do you think to this and various other recent government announcements?

• I was pretty unwell for the first prolonged time of my working life in the winter months
• The car was an absolute nightmare throughout winter too
• I picked myself up with an amazing trip to Mexico – dolphins and scuba diving
• I started a new job at Scope straight after
• I setup my first ever disability event (‘Sunnier Days’ starring Natasha Wood and Sophie Morgan)
• I also carried out some consultancy projects around Personalisation and social media
• Had articles published on these subjects in Disability Now
• Been co-opted on the committee for Tottenham Hotspurs disabled supporters
• Co-ran a workshop on disability tips/hints at the JTSMA conference
• Had some great times with family and friends – clubbing, Bournemouth, Stratford etc
• Flew a bloody plane and recorded a song (coming soon)

More recently I have been both exhausted and unwell. I know now I have to watch how much I do in life at any one time. We all live and learn. I’d still say no regrets as the push I have had the past year means I can continue these great things but only when I have it in the tank. Its definitely been worth it.

The past week my ex girlfriend, but definite life-long friend Lena has been over. I was a little frustrated I had so little energy and the cold was bad that I couldn’t be as sociable as normal. However its been a great week catching up nonetheless. We had a real good chin wag and managed a great evening on the Southbank before cruising around the London sights in the car afterwards to some tunes last night.

Also the past couple of days I have been very aware of my concerns about being ill so early in the year, with winter coming and my ability to carry on normal life if the colds keep coming. The problem is I enter a vicious circle of getting ill, worrying about how bad it will be and if I can work ok, that it doesn’t improve as quick. Having had a chat with work and creating a strategy for a) preventing my getting run down and b) what to do if I am ill, I am feeling so much more positive.

This led onto the first clear thinking I have had on life for a long while. People who know me understand I don’t let my disability stop me, I hate doing things ‘differently’ and I am a sociable and ambitious fellow. Having calmed myself around health and working with the coming colder months, I came to the following conclusion of my priorities:

• First is my health. I plan to take Echinacea, vitamins and most importantly eat better. Also to not overdo anything and listen to my body when it says chill. Looking forward to swimming starting up again after schools holidays.
• Second is my job. I love working at Scope and obviously it provides me with the means to be independent. Now I can relax about health worries and totally enjoy my role.
• Third is social life. While I cant overdo it I reckon I need a night a week and something on the weekend to enjoy. I plan to book some concerts I have spotted (with birthday money), read books more, just chill in a coffee bar sometimes and still manage a good booze up with mates too. Furthermore spurs are in the champions league too J
• Last but not least is extra stuff. I love blogging, supporting disability charities, writing articles, advising the Tottenham Disabled Supporters Association, consulting on social media and personalisation. These will definitely not stop. I am simply going to space out these projects and run them as a marathon and not a sprint (as I maybe have done this summer).

So I will be interested to see how much I stuck to this new insight and plan. Lets have a look at 28, or even New Years Eve. Either way it feels great to see the world from a simpler, workable and happy perspective. I do still feel a little tired and under par but I think it will pass soon.

All that is left is to get to work tomorrow, enjoy my team birthday lunch at Wagamama and then enjoy mine and Shashika’s joint birthday bash in Angel. Looks like well over 50 Scope people are attending. Could get messy. Then I am back to mums Saturday for a potential barbecue and St.Ives massive get together in town. Dad then suggested Sunday pub lunch to see him and get pressies. Then I have Monday off for annual leave and a nice chill, plus to spend some of my bday money. Finally I am off to Wales Tuesday/Wednesday before a meeting with Tottenham Hotspurs for work on Thursday. Happy times.  I will check in again in the meantime I am sure. Cheers, Martyn.

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.”

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.”

Codie is 6-year-old is a little girl, with Cerebral Palsy, who received a buggy in March 2009 through the fantastic support of the Priority Trust.

Codie’s Mum had applied to Whizz-Kidz for a buggy so that the family could do more, go out more and enjoy the outdoors by doing things such as walking on the moors.  Codie’s present manual wheelchair was too heavy and unsuitable for many outings on grass or uneven terrain.  Speaking about what it was like before receiving the buggy, Codie’s Mum said:

“Getting Codie in and out of the car more than once a day is a nightmare!”

Gina, the Whizz-Kidz therapist, met Codie and her Mum and recommended a make of buggy called a ‘Kangoo’.  This is three-wheeled buggy which is lightweight, durable and built to handle many different types of surfaces and uneven ground.  The buggy also supports Codie’s posture properly (very important for Codie who needs total support).  Thanks to the amazing help of the Priority Trust, Whizz-Kidz was able to handover this life changing piece of equipment in mid-March 2009.

Speaking of the difference that the buggy has made Codie’s Mum said:

“It has made a huge difference to our lives as family, and if you could pass our thanks on we would really appreciate it.”

These fantastic pictures show Codie in her Kangoo buggy attending an outdoor’s football party. As Codie’s Mum said:

“This family outing would have been really difficult to attend in her normal chair.”