The Northern Ireland Association for Spina Bifida and Hydrocephalus

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IMPORTANT REQUEST FOR YOUR HELP FROM CONTACT A FAMILY 

<:o:p>Hi all,

 

We have launched a campaign  Stop the DLA Takeaway. We are calling for the rules to be scrapped whereby a child’s DLA is taken away when they are in hospital for more than 84 days. This is penalising families at a particularly distressing time of their lives.

 

We are submitting a joint response to the Department of Work and Pensions consultation on welfare reform and are encouraging our contacts to show their support for the campaign by e-mailing the DWP themselves. It won’t take more than 30 seconds and the more support we receive, the greater chance we have of achieving fairness for families when their child is in hospital.

 

The consultation closes in ONE week so please take a few seconds now to submit your e mail, although we will continue to campaign on this issue .

 

There is  a campaign tool on our website, which enables all our contacts to quickly send an e-mail directly to the DWP – it’s all written and ready, so all people need to do is click on the link and press send. Please e-mail this to all your contacts, members and supporters and ask them to visit www.cafamily.org.uk/dlatakeaway to support our campaign.

 

To read the full report visit http://www.cafamily.org.uk/pdfs/Stop_the_DLA_Takeaway_2010.pdf 

 

Link to consultation

http://www.dwp.gov.uk/consultations/2010/21st-century-welfare/

 

 

 

Elaine Bennett I Media and Communications Officer

 

Contact a Family

 

020 7608 8741

 

www.cafamily.org.uk 

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STUDY TO TEST NUTRIENT ABILITY TO PREVENT BIRTH DEFECT

Pregnant women take folic acid to prevent neural tube defects

Scientists have begun a study to determine if an everyday vitamin supplement could help prevent one of Britain's most common birth defects.

Every year about 100 children in the UK are born with spina bifida and other neural tube defects.

Prospective mothers are advised to take folic acid as a way of preventing the condition.

However, scientists think the vitamin inositol, taken with folic acid, may be more effective at preventing defects. To read more click here

 

To read ASBAH's response to this important development click here

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CUTS IN PUBLIC SPENDING ON THE WAY

 

Have your say on what stays and what goes

 

Cuts in public spending are on the way. We know the NI Assembly has to find £1.2 billion in public spending cuts. There will be tough decisions to be made and the Consumer Council wants you to get involved.

 

Now is the time to make your voice heard and help shape how these cuts are managed by government. Have your say at one or both of the Consumer Council's open meetings on how these cuts may affect you, your family and friends. The Consumer Council will bring your views to the NI Executive Ministers and fight hard for what you believe must stay, what goes and how public services can be improved in the future. One meeting is being held in Cookstown on Thursday 9 September from 10 am to 1 pm and the other is in Belfast on Thursday 16 September from 6-9 pm. Refreshments will be available at both meetings. For full details and how to register click here

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IFA DISABILITY FOOTBALL CLUBS

 

Details have been received from the IFA of disability football activities in various venues across Northern Ireland open to junior and senior males and females. To read the details click here for Belfast. For BANGOR, COLERAINE, OMAGH and LURGAN click here

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 CONSULTATION BEGINS ON GUIDANCE ON THE TERMINATION OF PREGNANCY IN NORTHERN IRELAND

 

Revised guidance on the termination of pregnancy in Northern Ireland was issued for public consultation on 27 July, 2010.

 

The Department of Health, Social Services and Public Safety (DHSSPS) had previously published guidance in March 2009 on the termination of pregnancy in Northern Ireland. However in November 2009 the Guidance was subject to a Judicial Review. Following the Judicial Review decision, interim Guidance was published in February 2010 with the sections on conscientious objection and counselling omitted. This interim Guidance has now been withdrawn.

 

The Department has redrafted the sections on counselling and conscientious objection and has incorporated these into revised Guidance which is now issued for consultation.

 

The consultation period will run for a period of twelve weeks from 27 July 2010 ending on 22 October 2010.

 

This guidance can be accessed on the DHSSPS website at http://www.dhsspsni.gov.uk by clicking on the DHSSPS e-consultation link. Copies of the guidance are also available on request by contacting: Family Policy Unit, Castle Buildings, Stormont Estate, Belfast BT4 3SQ or telephone: 028 9052 0530.

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NIASBAH REPORT ON DUBLIN IF CONGRESS

 

Doreen Lyness attended the International Congress in Dublin in June, 2010, on behalf of the Belfast Branch of NIASBAH and Sid McDowell attended as Vice-President of NIASBAH. They have prepared a report on the Congress. Read more

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Warm Homes Scheme - www.warm-homes.com

 

H & A Mechanical Services have been appointed as Scheme Managers of the Warm Home Scheme on behalf of the Department for Social Development. The Warm Homes Scheme is designed to address fuel poverty among the most vulnerable in our community.

 
If you need help paying for heating and insulation improvements in your privately owned or rented home, you, your partner or civil partner may be able to get help from the government's Warm Homes Scheme. The Warm Homes Scheme provides a package of energy-efficiency and heating measures. Energy-efficiency advice, tailored to each household, is provided in accordance with the Energy Savings Trust's Code of Practice.

 

To find out more or apply call the Warm Homes Scheme Manager on Freephone:

 *

0800 988 0559

Lines open Monday to Friday 9am to 5pm. *Calls from a landline are free

www.warm-homes.com

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NORTHERN IRELAND CHARITY CELEBRATES

40th ANNIVERSARY IN STYLE

 

Northern Ireland Association for Spina Bifida and Hydrocephalus celebrated their 40th Anniversary recently with a fun packed and emotional FUN DAY celebrating the journey over the past 40 years.

 

With families turning up from all over Northern Ireland, almost 300 people found their way to Springhill, Moneymore to join in the celebrations and festivities.

 

Children, families and individuals enjoyed a mixture of brilliant forms of

entertainment.

 

Sid McDowell, CBE, NIASBAH's Vice- President said:

 

“A brilliant day was had by all, with loads of people turning up for the BBQ and the flower arranging for children was especially popular. There was also plenty of enthusiasm for the fabric flower making for adults, magic shows, puppet shows, exotic animals, disco/dance, face painting, treasure Hunt and all the rest of the days activities.

 

“The day was a great way to say thank you to all the people associated with NIASBAH for the help and support they have given over the years to help maintain essential services for children, families and individuals throughout Northern Ireland.  And the day was helped by our colleagues from ASBAH'S Regional Office (one of whom was a good friend of Mickey Mouse) and it was supported by the Big Lottery Fund”

 

Any families or individuals that have any questions or require information relating to spina bifida and/or hydrocephalus can contact NIASBAH by visiting

 

http://spinabifida-ni.org

 

To view the photos of the day please visit

 

http://spinabifida-ni.org/NIASBAHFunDayPhotos.aspx

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BE PREPARED-THE CHARITY COMMISSION HAS STARTED WORK

 

The Charity Commission for Northern Ireland has appointed its first Chief Executive. She is Frances McCandless and took up her post with effect from 8 April 2010. She will be responsible for leading the organisation in the establishment of a regulatory framework for the charitable sector in Northern Ireland.  Ms McCandless joins the Charity Commission NI from the Northern Ireland Council for Voluntary Action (NICVA) where she served as Director of Policy for 14 years. She has extensive experience working within the voluntary and community sector.

 

Hard on the heels of this appointment The Charity Commission NI (CCNI) has announced indicative dates for its work over the coming months to enable charities in Northern Ireland to prepare for the introduction of the charity register.

 

During April CCNI will receive the details of around 7,000 organisations from HM Revenue and Customs. These are organisations currently deemed to be charities for tax purposes.  They will make transitional arrangements for these organisations by placing them on a list called the Currently Deemed Charities List.  This is not the new register, but a list which will be publicly available on the CCNI website. While the organisations remain on this list, they will retain their charitable status with HMRC. CCNI will then start to transfer the 7,000 organisations gradually on to the new charity register, making individual determinations on each one to see if they qualify as charities under the Charities Act (NI) 2008. THey will start with 20 organisations to test out the new online registration system and take feedback from the organisations registering. They will then write to the others inviting them to register over the next 18 months – probably inviting organisations with a large income first and then working their way down through the rest.

 

This is a very significant event for charities operating in Northern Ireland. You can find fuller information by clicking here 


 

 INTRODUCING WADDLE

 

A brand new website has been set up to raise funds for the Royal Victoria Hospital for Sick Children and ASBAH.

 

The site has been developed by ASBAH member Paul Rainey and if you click through to the website you will find details of the journey travelled by Paul and his family which has prompted him to take this well organised fund raising initiative.

 

Waddle Vision & Aim

 

Waddle’s vision is to raise awareness of Spina Bifida & Hydrocephalus in Northern Ireland. 

Waddle will ‘Walk & Paddle’ 100 miles of the River Bann from source to sea in aid of the life changing work of the Royal Victoria Hospital for Sick Children, and the Association of Spina Bifida and Hydrocephalus (ASBAH). 

Waddle aims to encourage Northern Ireland society to pause, think and to be truly inclusive by changing attitudes and removing physical barriers which prevent disabled people living their lives to the full.

 

Charities

The Royal Victoria Hospital for Sick Children is the only dedicated Children’s Hospital in Northern Ireland providing specialist care for seriously ill children and support for their families across all six counties. 

ASBAH is the leading UK registered charity providing information and advice about Spina Bifida and Hydrocephalus.  ASBAH's vision is a future where everyone with Spina Bifida or Hydrocephalus can get the most out of life. 

www.asbah.org

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40th Anniversary AGM

 

ASBAH's Chief Executive, Jackie Bland (shown in picture), 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.


 


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 by telephone on 020 7608 8471 or e-mail elaine.bennett@cafamily.org.uk


 

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 dmage in the world.


FAMOUS PEOPLE AND SPINA BIFIDA
Names of individuals in alphabetical order BIFIDA

 

 

Updated 26 September, 2010 15:53:39 GMT