The Northern Ireland Association for Spina Bifida and Hydrocephalus

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 This interim Guidance has now been withdrawn.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 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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Go Kids Go OFFER WHEELCHAIR TRAINING COURSES -FREE OF CHARGE!

BELFAST

on Wednesday 28th July, 2010, from 10.30 am until 3 pm in Harberton School, Harberton Park, Belfast, BT9 6TX To view the flier click here

COLERAINE

on Saturday, 24 July, 2010, from 9.30 am to 3 pm in Sandelford Special School, 8 Rugby Avenue, Coleraine, BT52 1JL To view the flier click here

ENNISKILLEN

on Monday 26 July, 2010, from 9.30 am to 3 pm in Mount Lourdes Grammar School, Enniskillen, Co Fermanagh, BT74 6AB To view the flier click here

To reserve a place telephone 01482 887163

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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:

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.

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118th and 92nd Old Boys BB 'HAS BEENS' RAISE OVER £1200+

For the last number of years local ex  BB Old Boys players from the general Ballysillan area have donned their football boots again and played a friendly football match in aid of charity.  The two rival teams on each occasion being the 118th BB Old Boys and the 92nd BB Old Boys (Both teams re-inforced by numerous friends, associates and guests and this year by our very own Alan Crawford)

In the past four years, through players paying to participate and also getting sponsored for playing the ex BB lads have raised circa £6500 for various Northern Ireland charities.  These charities have included "Shine A Light", "Clic Sargent" "Kidney Research" and Multiple Sclerosis.

This year their chosen charity is Northern Ireland Spina Bifida and Hydracephalus-Belfast Branch. Yet again they have displayed fantastic fund raising ability and as things stand at present something over £1200 has been raised; we'll let you know the final figure in due course but in the meantime we have to say avery big thank you to 118th Old Boys  and 92nd Old Boys BB companies for their wonderful generosity. 

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ASSOCIATION OF WHEELCHAIR CHILDREN 

'Go Kids Go' are proposing a wheelchair training day 28.07.2010 in Belfast. The venue is yet to be confirmed and this early notice is enable you to put the date in your diary. As soon as we have further details we will circulate them.

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ABILITY NI DISABILITY EXHIBITION

Disability Exhibition 2010 is a bi-annual exhibition for people with disabilities, families, carers and healthcare professionals.

This year's exhibition is being organised in conjunction with Ability NI, Northern Ireland's first disability magazine. The event will take place on Friday 4th and Saturday 5th June 2010 at Lagan Valley Leisureplex in Lisburn.

The exhibition is the largest disability exhibition in Northern Ireland and showcases a wide range of products and services for people with disabilities.

Some of the feedback from the 2008 show

For further information please contact Ability NI on

Telephone: 028 9265 0059,

Text/SMS 07872 448939 or

email: donna@bebmedia.com

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 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."