SURREY ASBAH NEWS FEBRUARY 2012
Happy New Year from Surrey ASBAH. We hope you all had a lovely Christmas and wish each and every one of you a very happy and healthy new year. 2012 looks set to be a very exciting time for us. Find out more about some of our plans below.
News – proposed change of name
Following our news alert at the end of last year explaining our proposal to change our name, we have received a number of messages of support. Your committee is very excited about changing our name to “Surrey Spina Bifida . Hydrocephalus . Information . Networking . Equality – SHINE” with a working name of Shine Surrey. We believe that the more modern image created by the name will boost our fund raising and, over time, give us a more recognisable name that people will remember.
Our proposal to be known as Shine Surrey will be recommended by the committee at the AGM on 25th March 2012 and a formal vote will be taken. We need agreement to change our Constitution for the change in name. I’m pleased to tell you that the Charity Commissioners are happy with our proposed changes – now it is up to you! Liz Tadd is happy to discuss the changes with you.
Important - Membership renewal 2012
Membership of Surrey ASBAH remains £5 a year and for this you receive our regular newsletters and you benefit from subsidised social events. You will only be eligible to vote at the AGM if you are a fully paid up member of Surrey ASBAH so please renew your membership promptly. Each completed membership form and £5 paid entitles that family to one vote at the AGM although the benefits of membership are available to the whole family at that address. We would like to encourage all our young adult members (age 18+) to register as a member of Surrey ASBAH in their own right. This will mean that, as well as being able to vote, we can contact you directly by email, phone or letter rather than via parents and we will be able to target activities more easily towards our young adult members. If you would like a membership form please contact us.
Forthcoming Events
Surrey ASBAH’s Annual General Meeting and Meal
Our AGM and meal will take place on Sunday 25th March 2012 (please note the change of date). Arrangements are the same as they have been for the last few years starting with lunch at the Blue Ball public house and moving on to Lower Kingswood for our meeting.
The main business at the AGM will be a discussion of the proposed changes to our constitution including changing our name to Shine Surrey. Please make every effort to attend the AGM to have your say on the changes that are proposed. Copies of the full constitution and proposed amendments will be available at the AGM or can be sent to you on request.
Jo Francis, manager of the London and South Regional Office, will be attending our AGM. Jo will be retiring this summer after many years service to ASBAH (and now to Shine). This will be our opportunity to wish her well in her retirement and to thank her for her great support and advice over the years. Please come along to say good bye.
The meal will cost £9 per adult (a main course and sweet). We ask that you pay for your own drinks please. We have succeeded in reducing the price to £9 this year by negotiating a special two course menu – details attached. Children are very welcome and there is a special menu for them which will cost £5 each. No need to pre-order children’s meals. You can order them on the day. More details about the pub, and food for children, can be found on their website http://www.theblueballpub.co.uk. For adults’ meals you will need to pre-order your choices by Sunday 18th March.
Please contact Sarah Smith for any queries regarding the meal.
We really hope you and your family can come. It is a perfect setting to catch up with all members of our group and get to know each other more.
Save the date! Surrey ASBAH’s summer picnic
Please join us for our summer social event of the year – the Surrey ASBAH Summer Picnic. The picnic will be held on Sunday 24th June from 4pm, once again at the Old Pheasantry, which is located at the top of Colley Hill near Lower Kingswood. We have always been lucky with the weather so fingers crossed we will have a sunny day again this year. This is a great social day out and we hope you can make it. More details to follow in the next newsletter.
Hydrocephalus Awareness Days
Following on from the success in Exeter, Shine is holding another Hydrocephalus Awareness Day on 24th April 2012. We are delighted to report that this event will be held in Surrey at the Harlequin Theatre, Redhill. It will start at 10am and run until 4pm; cost is £10 per person. The day is aimed at parents of children with hydrocephalus. Speakers will include Gill Yaz and Naomi Marston and there will be the opportunity to meet other parents and exchange ideas. A buffet lunch will be provided.
A booking form will be in the next issue of the Together magazine, or alternatively you can contact Angela Bailey direct. Deadline for applications is 23rd March.
In addition, there is to be an information day for adults with hydrocephalus and carers. The date is 27th March at the Salvation Army Headquarters, 101 Queen Victoria Street, London EC4P 4EP. It will run from 10am – 4pm and the cost is £10.00 per person. Diane Morgan is co-ordinating this event. The deadline for applications is 2nd March. The link on the Shine website is -
http://www.shinecharity.org.uk/our-community/events/2012/03/27/hydrocephalus-the-hidden-disability. A booking form will be in the next issue of the Together magazine, or alternatively you can contact Diane direct.
London Social Group
The social group in London is for over 18’s. They are an active, friendly and diverse group who welcome all newcomers.
Their next social event is a trip to the London Aquarium on 12th February.
If you are interested in going or getting involved in the London Social Group, please contact Hilary Franklin: Email: hilary.franklin@shinecharity.org.uk or Telephone: 0208 449 0475
Shine News
Social Media – by Jo Francis
Shine is realising that many people these days use Facebook, Twitter, and Linkedin etc., as their means of communication. As an individual I had been concerned about communicating in this way, but our Social Media Officer, Darren Fower, convinced me to give it a try.
I have gone on to Facebook as www.facebook.com/Shine.Jo.Francis
Already I am communicating with people from around the world. I can put out bits of information, ask questions, make requests and get almost instant feedback. It enables us to spread our message quickly to a group of people who probably wouldn’t be in touch with us by ordinary methods.
Health queries get picked up and dealt with and answers are often shared so that other people can benefit from the advice given.
So – if you have thought about it – give it a go!
Jo Francis
Practical workshops
Jo has also informed us that Shine is looking at holding some practical workshops in London on sewing, photography, woodwork and possibly cooking. Jo would like to know if any members would be interested so that she can decide whether there is sufficient interest to go ahead. Please contact Jo Francis if you are interested.
Fundraising
Prize Draw
Our annual prize draw is a very important fundraiser for Surrey ASBAH. This year we will be organising another one and we plan on making it bigger and better than previous years. Our committee members will be working hard to line up some fabulous prizes. If you are in contact with any companies that you think may like to donate a prize, please contact Linda Corbett.
Books of tickets to sell will be sent to you in the next newsletter. Linda will also bring some to the AGM. Please do your best to encourage friends and family to buy some! The draw will be made at the annual summer picnic on 24th June. Look out for details of prizes in the next newsletter.
Recent Events
Bowel and Bladder Coffee Morning
On 4th November a group of mums, dads and children met over coffee to discuss Bowel and Bladder issues for children with Spina Bifida. The morning was hosted by Gill Yaz from Shine who spoke in depth about these issues from a professional point of view. It was a very informative and interesting meeting, as well as a useful social event for some of our families to meet up and share experiences.
Our local Shine support and development worker Angela Bailey also came and offered invaluable advice and support. It was a very successful meeting, and we are hoping to hold more small group discussions in the future. Thank you to Gill, Angela and our Committee Chair Liz Tadd for coming and contributing and for Sarah Kelemen for her hospitality.
A topic of “Adolescence and Puberty” was suggested for the next meeting. If you are interested in attending, or have ideas for other topics, please contact Sarah Kelemen.
Panto!!
Our annual trip to the panto on Saturday 7th January was full of laughter. 31 of us went and saw Cinderella at the Epsom Playhouse. Bailey (6 years) said: “The best thing about the show was when Buttons kept calling out “How you doing?” and we all had to call out “Brilliant”!” His sister Abbey (4 years) begged to differ and said she just loved Cinderella best! A lot of fun was had by all and just like previous years, it was hard to determine who enjoyed it the most – the children or the adults!
What would you like to do?
Here at Surrey ASBAH, we are always evaluating what we do, and looking at new ways of improving the service. If you have requests, queries or suggestions, please contact any committee member. It is important to us that we are doing everything we can for our community.
Parents of young children
The Regional Office has received requests from some parents of young children to arrange some social get togethers for parents of young children across London and Surrey. If you would be interested in being part of such a group, please contact Hilary Franklin in our office - either by telephone 020 8449 0475 or by e-mail: hilary.franklin@shinecharity.org.uk
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Information*
*The information provided here is given in good faith, in the hope it will be helpful. Nothing found here has necessarily been reviewed by us and we therefore cannot guarantee the validity of the information.
BBC Digital TV Help Scheme
TV is switching to digital all over the UK and the traditional TV signal is being switched off area by area. When your home switches to digital will depend on where you live in the UK. The switchover happens TV region by TV region.
Everyone needs to be ready for the switchover or you will lose TV channels. If you have 5 channels or fewer on any TV in your home, you will need to convert it to digital.
The Help Scheme is run by the BBC and can help everyone who is eligible disabled, aged 75 or over, registered blind or partially sighted or anyone who has lived in a care home for 6 months or more with everything they need to switch one TV to digital.
For more details see http://www.helpscheme.co.uk
Council Tax reduction for disabled people
You may be entitled to a reduction in Council Tax if you are disabled or have a disabled person living with you.
Having a disability does not automatically entitle you to a reduction.
In summary, the requirements for a reduction are the property must be the main residence of at least one disabled person. It must also have at least one of:
• an additional bathroom or kitchen required to meet the needs of the disabled person
• a room (other than a bathroom, kitchen or toilet) required to meet the needs of the disabled person, and used predominantly by them
• extra space inside the property to allow for the use of a wheelchair - wheelchairs for outdoor use only are excluded
The room or the wheelchair must also be of major importance to the disabled person's well-being, due to the extent of their disability.
'Disabled person' in this context means a person who is substantially and permanently disabled. The disabled person can be either an adult or a child and does not have to be responsible for paying the Council Tax bill.
Click here for more information.
Free Cricket - Chessington Disability Cricket Club
Cricket4Change are offering free PAN Disability cricket sessions for young people aged 11 to 18 years The club runs on Wednesdays 5:30pm - 6:30pm at Chessington Sports Centre KT9 2JS. Please contact coach Alex Bassan on 07840144933 email: alexbassan@cricketforchange.org.uk for more details.
(PIP) replaces working age disability living allowance (DLA) from April 2013
The personal independence payment (PIP) replaces working age disability living allowance (DLA) from April 2013. PIP will have many similarities with DLA. In particular it will have two components: a daily living component (which has similarities to the current care component) and a mobility component. The following link: http://www.disabilityalliance.org/f60.htm?mid=567 provides a basic overview of PIP. The DWP has produced a number of briefing notes on PIP, available at http://www.dwp.gov.uk/policy/disability/personal-independence-payment/ as well as an information document of frequently asked questions on PIP at http://www.dwp.gov.uk/docs/personal-independence-payment-faqs.pdf
www.disability-grants.org
This is a useful website we found that helps you to save time finding Disability Grants. The content is updated weekly and seems to list a lot of organisations that may be able to offer funding for various needs.
Linda’s Line
Once More unto the Breach
To apply or not to apply, that is the question. Whether ‘tis nobler in the mind to suffer the slings and arrows of outrageous DWP decisions, or to take arms against a sea of paperwork, and by opposing change it?
Or, if you prefer 21st century speak, do I make yet another attempt to apply for DLA benefit?
The form is already downloaded and sitting on the dining room table but I have not yet mastered the will to pick up a pen and fill it in. It is a serious consideration as this could be three hours of my life I’ll never get back. The kind people at Shine central have assured me that I ought to have a good chance at getting the mobility component but so far, the DWP has been disinclined to acquiesce to my request. Up until the date I first applied, Shine’s Support & Development Worker Angela had a 100% track record of getting applications accepted and is still bemoaning the loss of her reputation after my last unsuccessful attempt.
One of the problems is how to adequately explain to the DWP what the difficulties are as they are often just things that occur on a day-to-day basis which come under the heading of “ordinary life”. Shoes are a case in point: despite finally navigating my way through the complex hospital system that has resulted in two pairs of very nice (free) shoes, I am still perfectly capable of falling over in them since auto-vertical enhancements don’t come as standard on the NHS. By way of example, I opened our porch door the other evening as I arrived home from work and lost my balance. Luckily I was hanging onto the door handle and executed a fairly swift pirouette on my good leg, swinging right round to the other side of the door. If I had been quick enough, I could have grabbed the post off the floor before I managed to stand upright again, which would obviously have looked more impressive. According to Wikipedia, a pirouette should have the non-supporting leg in the “retiré” position (leg raised to the side, knee sharply bent and the toe pointed in front of, or behind, the supporting knee) or in “arabesque” (leg extended behind the body with the knee straight). Mine must have been a combination of the two as I scuffed the side of my shoe on the front door as I spun round.
Short of uploading this demo for the DWP, I am at a loss as to how to improve on the last submission but all suggestions will be gratefully received. And even if I do take the plunge and fill this form in, it remains to be seen whether the answer will be any different from last time. In the words of the Bard himself, there is a tide in the affairs of men which, taken at the flood, leads on to fortune. However I suspect that in the current economic climate, it is more likely that this will be the winter of our discontent.
Contact details
Email: asbah@surreyasbah.org.uk
For advice please contact:
Mrs Angela Bailey – Telephone 01293 775775 . Angela’s working days are Tuesday/ Wednesday. Please leave a message on the answering machine if Angela is not available.
Email: angela.bailey@shinecharity.org.uk
Mrs Diane Morgan - London Boroughs of Merton, Sutton and Croydon. Please contact
her on 020 8659 3060 Diane works Tuesdays, Wednesdays, Thursdays 9am-3pm. Email: diane.morgan@shinecharity.org.uk
Mrs Jo Francis – Manager, Shine London and South Office on 020 8449 0475.
Email: jo.francis@shinecharity.org.uk
Hilary Franklin - London Social Group – Telephone 020 8449 0475 Email: hilary.franklin@shinecharity.org.uk
Your committee members are:
Chair: Mrs Liz Tadd
Treasurer: Mr Jim Stoner
Secretary: Mr Simon Marsh
Other committee members:
Mrs Linda Corbett
Mrs Sarah Kelemen
Mrs Sarah Smith
Mr James Tadd
Dr Andrew Tadd
Please feel free to contact us if you would like help or advice, information about activities or fundraising or if you have some good ideas to pass on.
- Surrey ASBAH
- Shine LSRO
- 209 Crescent Rd
- New Barnet
- Herts EN4 8SB
01293 775 775
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