News Items (The most recent item appears first)
______________________________________________________________________________________________
NORTHERN IRELAND ASSOCIATION FOR SPINA BIFIDA AND HYDROCEPHALUS 40TH ANNIVERSARY AGM
ASBAH's Chief Executive, Jackie Bland (shown in picture above), was the Guest Speaker at NIASBAH's 40th Anniversary AGM which turned out to be a very special occasion indeed. It proved to be a splendid opportunity to get to know Jackie and her pleasant personality and obvious interest in those attending the meeting provided a real sense of optimism for us all about the quality of future relationships. The event took place in the Lansdowne Court Hotel, Belfast and proved to be the best attended AGM of recent years. It was good to welcome back old friends of the Association who had served it well for many years-Jimmy Donnelly and his wife and also Eddie Weir and his wife Marcella were among those who not only took part in the meeting but answered one or two questions in the Quiz which kept us busy until a very enjoyable meal was served. Also present was Cathy McKillop, Director of the ASBAH Regional Office in Northern Ireland and she was accompanied by ASBAH Advisers Irene Kean and Catherine McCurry. Most of those present remarked that it had been a lively and interesting meeting and that the informal craic was just as good, and important as the meeting itself.
As our Photo Gallery of the occasion shows there was also an anniversary cake to be cut and there was no shortage of people getting in on the act when it came to photos being taken. All told a good meeting with a sense of optimism around and several speakers stressed the need for the NIASBAH and branches in Northern Ireland to work ever more closely with our colleagues in the Regional Office and with UK ASBAH not only because of the worsening economic situation but also because it made plain sense.
And a huge vote of thanks goes to the Belfast Branch for hosting the event and making everybody feel so welcome and in particular
Branch Chairperson, Collette Smith, Branch Chairperson, Veronica Crawford and we suspect Alan Crawford and Alison played their part too. Thanks go to Alan for arranging the Quiz which kept us all busy until the food was ready.
_________________________________________________________________________________
ASBAH REGIONAL OFFICE IN NORTHERN IRELAND BEGINS RECRUITMENT FOR BIG LOTTERY FUNDED POSTS
The recruitment process to appoint staff to the newly created posts funded by the award of a grant from the Big Lottery Fund is now under way. Advertisements have appeared in local papers over the last few days and a copy of the advertisement is reproduced below for your information.
_________________________________________________
ASBAH-BIG LOTTERY FUND AWARD
It sometimes seems that there isn't a great deal of good news around but for the Regional Office of ASBAH in
Northern Ireland that isn't the case today.
The Big Lottery Fund (BIG) has announced the award of almost half a million pounds to ASBAH in
Northern Ireland.
The details from the announcement are as follows:
Association for Spina Bifida and Hydrocephalus | NI-wide | The grant will be used to fund the Getting the Break project which will improve the health and well-being, training opportunities, and confidence of a greater number of people with these debilitating conditions, their families and carers. The project will run a range of training programmes that will encourage people to learn new skills, improve their self-esteem and gain independence including daily living skills, confidence building, speaking in public, an introduction to employment, IT skills and sport and recreation. |
£493,617 |
This is a truly fantastic achievement and our warmest congratulations must go to all those involved in the successful bid for this
substantial funding. Putting in these bids is a complex and necessarily bureaucratic process and to win through after a lot of hard
work is quite remarkable.
ASBAH have already been in touch with a range of interests and stakeholders to help them plan the administration and most
effective use of the funding and a number of exciting possibilities are in the pipeline. Apart from that this breakthrough provides
a golden opportunity to develop a much closer and positive working relationship between the various ASBAH interests in Northern Ireland.
As plans are developed information will be circulated as widely as possible on an on-going basis.
_____________________________________________________________________________________
DISABILITY ACTION HOUSING PROJECT
Are you a disabled person or a carer? Would you like to tell other disabled people about products that you have found useful or had difficulties with?
These could be products such as showers, handrails, toilets, baths or stair lifts, in fact the list is endless. Disability Action, in partnership with the Northern Ireland Housing Executive, is looking for people with a range of disabilities and carers from across Northern Ireland to take part in a research study in early 2010.
The research study will give you the opportunity to recommend products that have made your life easier or to highlight difficulties you are having with particular products.
The products that you make comments about will then be included on a list some of which will be reviewed by a Products Working Group made up of representatives from the Northern Ireland Housing Executive, occupational therapists, manufacturers, suppliers and people with disabilities.
How to take part in the research study?
If you would like to take part in the research study you can submit your story or register your interest online at www.disabilityaction.org/housing or contact our Administrator, Laura Cleland:
Telephone: 028 9029 7880 028 9029 7880
Textphone: 028 9029 7882 028 9029 7882
Email: lauracleland@disabilityaction.org
_____________________________________________________________________________
SPINA BIFIDA, HYDROCEPHALUS, ANENCEPHALUS: NUMBER AND RATE PER 1000 TOTAL REGISTERED BIRTHS TO MOTHERS RESIDENT IN NORTHERN IRELAND 1995-2007
_______________________________________________________________________________
DO YOU LIVE IN NORTH DOWN? DISABILITY MATTERS NORTH DOWN and ARDS HAS BEEN RE-LAUNCHED
If you live in North Down then we suggest you visit the website of Disability Matters North Down and Ards because they are having a re-launch sometime soon and have great plans for a range of activities for people with disabilities in the area. Among other things they will be providiong the opportunity for people to get together socially and we know that a number of you are very keen on this. Visit www.disabilitymattersnda.co.uk
__________________________________________________________________________________
CALLING FAMILIES AFFECTED BY SUSPENSION OF BENEFITS WHEN DISABLED CHILD HOSPITALISED
Contact a Family is looking for families whose children have had their Disability Living Allowance (DLA) suspended after a stay in hospital. Families from Northern Ireland are asked to contact Elaine as she wants to get feedback from across the UK.
At present DLA regulations state that if a child under 16 is in hospital for more than 12 weeks their DLA payments are suspended. For young people aged 16 and over the payments are suspended after only four weeks.
This can impact on a parent's entitlement to continue getting Carer's Allowance.
Contact a Family thinks this is wrong and we are gathering evidence from families about the effect of this benefits rule, to highlight the issue and push for change.
Claire Pimm, Director of Policy and Communications, said: "Children who have long-term health needs are often in and out of hospital and this puts tremendous pressure on their families. It is wrong that they are financially penalised at such a difficult time.
"If your child's DLA has been suspended after a stay in hospital please do get in touch. We would like to gather as much evidence as possible so that we can highlight this issue and encourage change in the regulations."
For further information contact Elaine Bennett on Telephone: 020 7608 8741 020 7608 8741 or e-mail: elaine.bennett@cafamily.org.uK
_____________________________________________________________________________________
OCCUPATIONAL THERAPISTS ISSUING WHEELCHAIRS
In the Northern Ireland Assembly Ian McCrea (DUP) recently asked the Minister of Health, Social Services and Public Safety what criteria are in place for Occupational Therapists
issuing wheelchairs to patients. (AQW 3212/10)
In reply the Minister of Health, Social Services and Public Safety said: The Department of Health, Social Services and Public Safety is committed to the provision of a person-centred, accessible, responsive and equitable wheelchair service to every individual in Northern Ireland who is assessed by an Occupational Therapist who confirms the need for a wheelchair. Comprehensive regional access criteria and policy guidelines for wheelchair provision has been developed in partnership with users and professionals. This guidance will be formally signed off by the NI Occupational Therapy Managers in early 2010 for implementation across the province.
_____________________________________________________________________________________
COUNCIL FOR HEALTHCARE REGULATORY EXCELLENCE (CHRE)
How are local hospitals, nurses, dentists, doctors or other healthcare professionals regulated? This may only be a question you ask when something goes wrong with your treatment or in the treatment of a loved one. You are invited to attend a meeting with the CHRE where you can meet some of the people who can answer this question and who are involved in making decuisions that may affect you healthcare. Themeeting starts at 10 am and is free. For details click here ___________________________________________________________________________________
DISABILITY ALLOWANCE SAVED-BUT ONLY IF YOU ARE UNDER 65!
Health secretary Andy Burnham has said that he has ‘heard the concerns and worries about disability living allowance’. As a result, he has announced that: “I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.”
Good news indeed . . . for some . . . for the moment.
But definitely not for the one and a half million people who depend on AA.
Nor for the for the three quarters of a million people aged 65 and over who receive DLA.
Not even for the 400,000 DLA claimants currently aged between 60 and 64, many of whom will have reached the age of 65 by the time labour’s proposed National Care Service is introduced.
Because, of course, DLA is not just paid to people under 65. You have to make your claim before you are 65, but you can then go on claiming indefinitely if your needs do not change. For more details click here _________________________________________________________________________________________ MANDATORY FORTIFICATION WITH FOLIC ACID AND IODINE IN AUSTRALIA From September 13, all bread in Australia must contain an added, minuscule, dose of the vitamin Folic Acid, with the exemption of organic bread. Then, from October 9, another Food Standards Australia New Zealand (FSANZ) edict will come into force requiring all bread to contain iodised rather than ordinary salt. This will help to decrease the Folic Acid and iodine deficiencies in the Australian population. Education campaigns for pregnant women on the timely use of Folic Acid have not brought it up to the required level that women need to prevent neural tube defects such as Spina Bifida. Iodine deficiency is the single most common cause of preventable mental retardation and brain damage in the world.
_____________________________________________
ACTOR WITH SPINA BIFIDA STARS IN BBC'S EASTENDERS
26-year-old David Proud, who was born with Spina Bifida and uses a wheelchair, is the first disabled actor to be offered a permanent role in the biggest British soap opera EastEnders. His disability has never stopped him when he was young from dreaming about being on stage. It started with the role of Tiny Tim in a school play. From then onwards he had a passion for drama. David studied drama at GCSE level and then theatre at A Level, but wasn't feeling confident about fulfilling his dream. An advert for an open audition for a BBC wheelchair basketball drama changed his life. He was cast into one of the lead parts. He hopes that his appearance in EastEnders will change the way the media portray people with a disability. Read an interview with David Proud on Disability Now .
____________________________________________________________________________________________
FAMOUS PEOPLE AND SPINA BIFIDA
Names of individuals in alphabetical order BIFIDA
_____________________________________ ______________________________________ DUBLIN 2010 - IF's 21st INTERNATIONAL CONFERENCE "WHAT'S THE NEXT STEP?"
Together with Spina Bifida Hydrocephalus Ireland (SBHI ), IF will hold its 21th international conference "What's the next step?" in the City West Hotel, Dublin, Ireland on Friday 11 and Saturday 12 June 2010. Registration for this positive life choices seminar will start in September. The registration fee includes a welcome reception, entry to all conference sessions each day, access to exhibitions, conference materials, including programme and book of abstracts, and much more. IF board member Eli Skattebu will be speaking at the conference, as well as IF's medical advisor Dr. Benjamin Warf. More details will follow and can be found on the conference website. _________________________________________________________________________________________
CHARITY COMMISSION FOR NORTHERN IRELAND (CCNI)
The Charities Act (NI) 2008 provides that to be a ‘charity’ an organisation must be established for charitable purposes. It further provides that these purposes are charitable only if they satisfy the test that they are for the public benefit.
The Charity Commission for Northern Ireland (CCNI) is required to issue guidance on how it will apply the ‘public benefit’ test and has published a consultation document entitled “Meeting the Charity Test – Demonstrating Public Benefit.” This document sets out the Commission’s views on what it needs to take into consideration when deciding whether an organisation can become, or continue to be a charity under the law of Northern Ireland.
___________________________________________________
NEW NORTHERN IRELAND CHARITY COMMISSIONERS ANNOUNCED
The Minister for Social Development, Margaret Ritchie MLA, has announced the appointment of six Commissioners to the new Charity Commission for Northern Ireland. Mr. Tom McGrath has been appointed as Chief Commissioner with Ms Patricia Sloan as Deputy Chief Commissioner. The other Charity Commissioners are Ms Angela Chada, Mr Paul Cavanagh, Mr Philip McDonagh and Mr Walter Radar.
_______________________________________________
NEW SATURDAY WHEELCHAIR SPORTS CLUB IN BELFAST
A new Wheelchair Sports Club has been set up at The O-Zone Leisure Complex in Belfast. The club is aimed at primary and secondary aged kids.
It starts on Saturday 5th September 2009 from 11 am till 1 pm. So why not go along and check it out!
DISABILITY ACTION-CENTRE FOR HUMAN RIGHTS FOR PEOPLE WITH DISABILITIES
Disability Action’s Centre on Human Rights for People with Disabilities has successfully obtained approved centre status by the Open College Network (OCN) to deliver accredited training programmes.
National Open College Network (NOCN) is the leading credit-based Awarding Body in the UK, offering high quality, flexible, credit-based qualifications and is accredited by the Regulatory Authorities in England, Wales, Scotland and Northern Ireland.
Disability Action’s Centre on Human Rights for People with Disabilities are pleased to be offering an OCN (Entry Level 3, Level 1 and Level 2) in ‘Understanding Human Rights’ and an OCN (Level 2) in ‘Understanding the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which are both new and unique to Northern Ireland.
Both these training programmes are suitable for people with disabilities, people working in the voluntary and community sector or the public sector. To view leaflets about these FREE training opportunities click here and here
Further information is available from:
Heather Logan
Training Officer
The Centre on Human Rights for People with Disabilities
58 Strand Road
Derry
BT48 7AJ
Tel: 0044 (0) 28 71 360811 0044 (0) 28 71 360811
____________________________________________________________________________________
The Bladder and Bowel Foundation, (formerly Incontact and the Continence Foundation) is the UK’s leading charity providing information and support for people with bladder and bowel control problems their carers, families and healthcare professionals.
There is an absolute wealth of useful information on this website and there are opportunities to help with research taking place.
Invitation to participate in research to develop more absorbent washable pants
A project is now being undertaken by a team of scientists and nurses from the Continence and Skin Technology Group based at University College, London to develop more absorbent washable pants for light urinary leakage.
The University College, London would like women over 18 to consider taking part in this research. The project needs volunteers to participate and try out some new washable pants, which will be provided for the purposes of this study.
If you or someone you know is interested in taking part in this project, please download the invitation here for further information and full contact details.
Invitation to participate in research to improve leg worn urine drainage bag design
A new research project to investigate usability issues to lead to improved leg-worn urine drainage bag design is taking place. The team carrying out the research are looking for people over the age of 18 to help them by taking part in interviews and make suggestions for improvements, eg about connectors/taps. They are looking for participants who use leg bags; both as direct users, as well as carers.Later you could be asked to review potential new designs.
If you or someone you know is interested in taking part in this project, please read the Invitation and Information Sheet for more information and details of how to apply. Click here
__________________________________________________________________
USE NIASBAH'S ONLINE SHOP AND HELP US RAISE FUNDS
We have a new webshop! Every time you shop using its links, you’ll automatically earn money for us! You don’t pay anything extra, so please try to use it whenever you can. Thank you!
Find our webshop at www.buy.at/NIASBAH (please bookmark this link for future use).
___________________________________________________________________
INOSITOL STUDY
From UKASBAH we learn that scientists are appealing for women who have experienced a neural tube defect pregnancy to take part in an important new study.
Women planning a pregnancy are already encouraged to take folic acid before conception and in early pregnancy to prevent neural tube defects (NTD).But scientists believe that the lack of another vitamin – inositol – can also cause the baby to develop NTD or even anencephaly, where the brain is largely absent.
Now the Medical Research Council has funded research led by Professor Andrew Copp at the Institute of Child Health in London.
The PONTI study – Prevention of Neural Tube Defects by Inositol – began earlier this year and ASBAH has agreed to help the team by asking women who have experienced a NTD pregnancy to join the study and perhaps take vitamin inositol (as well as folic acid) if they are planning another pregnancy.
No dangers or side effects of inositol are known. It has been used in high doses to treat other conditions and is naturally widespread in many foods and some health supplements. No problems have ever been found.
Anyone wishing to know more, or is considering taking part, should contact Rosemary Batchelor, ASBAH’s senior health adviser, on 01733 421306 01733 421306.
You can find further details on the study website or by email from here.
-------------------------------------------------------------------------------------------------------------- Ian and Maxine Lynas were to climb Croagh Patrick on 15 July in new Fundraising effort-but did they make it?
Yes they did! See their entry in our guest book. Congratulations!!!
For details visit their special fundraising page which is available here.
ARTS AND DISABILITY WEBSITE
The first all-Ireland website to provide information, resources and facts about Arts and Disability, is proving to be an essential tool for parents, families, advice workers, arts bodies and the wider community. The website was developed by the Arts Council of Northern Ireland and the Arts Council/An Chomhairle Ealaíon. For further details click here.
____________________________________________________________________________________
For full details of how to contact all of the Northern Ireland Branches click Branches
Updated 07 March, 2010 23:40:22 GMT