NI Newsletter
Reg Charity No 249338
Summer 2015
Inaugural World Birth Defects Day
The First World Birth Defects Day was marked in Northern Ireland by a joint event with Rare Diseases Day. The event took place in the Lough Erne Resort in Enniskillen. Shine’s Cathy McKillop presented information about spina bifida and Martine Austin, our Head of Prevention, presented on the importance of Folic acid. The event was opened by Gerard Guckian Chair of the Western Health and Social Care Trust and in his address he mentioned the importance of folic acid, which when taken at least three months before conception until at least the first three months of pregnancy, can greatly reduce the risk of Neural Tube Defects.
“This was a great opportunity to speak at an event which was attended by health care professionals, patients/ clients, carers and researchers.” Cathy McKillop
On the evening before, an event was held for Shine members in the Westville Hotel in Enniskillen. Marie McGonnell and Martine Austin spoke at this event.
Shine NI PO Box 132, Cushendall BT44 0WA E: northern.ireland@shinecharity.org.uk T: 01733 555988 W: shinecharity.org.uk
Changes in SEN
Sometime ago the Department of Education and the Northern Ireland Assembly conducted a review of Special Educational Needs (SEN). All stakeholders were consulted and on behalf of Shine and our service users, I submitted a detailed response outlining concerns about the proposed changes. Some attention has been paid to this submission and those presented by other organisations, which support children and young people with disabilities, with specific reference to their access to education.
In the meantime, it is vitally important that all current Statements of Special Educational Need, and the Statutory Assessment Process which facilitates them being drafted, are rigorously enforced.
The Bill, called The Special Educational Needs and Disabilities Bill, has processed through the Assembly and the Education Minister has presented it to the Education Committee, who are currently scrutinizing its contents.
Please consult me by phone or email as detailed below, to ensure that the content of your child or young person’s Statement of Special Educational Needs is specific to their individual needs, with the hours of adult assistance quantified and the type of assistance specified.
Along with representatives from several other voluntary organisations in the Children with Disabilities Strategic Alliance, I presented our concerns about some of the inclusions in the Bill to the Education Committee on 24th May 2015. It is expected that the Bill will become law in 2016-2017 and as such will change how the support and resourcing of children and young people with disabilities in education is processed and resourced. However when it is finally ratified, I will ensure you are fully informed about its implications and how you can best advocate on behalf of the child or young person in your care, with support and information from Shine.
If addressed early this can save a lot of worry and concern for parents who are anxious to ensure that their child or young person has access to educational provision and support... If you have any other queries about Annual Reviews or how to complete the Parental Advice for either Annual Review or Statutory Assessment (and it is crucial that you do) please contact me also. Most concerns can be dealt with by phone or email easily. If addressed early this can save a lot of worry and concern for parents who are anxious to ensure that their child or young person has access to educational provision and support on a par with their peers, who are not dealing with challenging medical, physical or cognitive conditions such as spina bifida and/or hydrocephalus. No concern is too small, so lift the phone or send me an email. Catherine McCurry Education Adviser Shine NI T: 07789616486 E: catherine.mccurry@shinecharity.org.uk
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Thirty for 30
It is hard to think that we are nearly halfway through the year already which also means I am halfway through Lisa’s ‘Thirty for 30’ – my year of fundraising for Shine celebrating my impending 30th birthday. The principle seemed simple, thirty events in 365 days, raising awareness of Shine and a financial target of £1,000 to support their work especially here in Northern Ireland. So where am I at with it all? Well, to date, six events are either ongoing or completed, including a raffle, a ‘Reada30’, ‘Antrim to Peterborough Trek’, a treat lunch for the staff of a local primary school, a Wear Yellow and Shine day by a local Grammar school, a supermarket collection and a ladies cinema night. Many more activities are in the early planning stages and contact with the various people and organisations has yet to be completed. You may be asking at this point how can I get involved? There are several things you could do. Do you enjoy reading? Then why not take part in our Reada30, in which you pledge to read for 30 hours and ask your friends and family to make a small donation? Not for you? Well, maybe you enjoy walking? Then why not take part in the Antrim to Peterborough Trek, pledge a number of miles and ask people to sponsor you and help us to reach a total of 800 miles – the distance between Antrim to Peterborough and back. Maybe these activities seem too much like a chore? I have the perfect idea for you; invite a group of friends round and have a dessert night enjoying the company of good friends and lots of yummy desserts!
...why not take part in the Antrim to Peterborough Trek, pledge a number of miles and ask people to sponsor you and help us to reach a total of 800 miles – the distance between Antrim to Peterborough and back.
We have already exceeded my financial goal for the year so let’s just see how far we can go and have some fun while we are at it! To get involved, please contact me on C facebook.com/groups/lisas30for30 Lisa Law 3
Thank you Shine Fundraisers
Dairy farmers choose Shine as charity of the year
The South Antrim Dairy Farmers nominated Shine as their Charity of the year. They held an event and raised an amazing £4,255! The cheque was presented by the treasurer, John Miller, to Ben Shanks, whose family had nominated Shine to be the Charity of the year.
Changes to the NI team Due to reductions in our funding we have had two redundancies in Northern Ireland. Irene Kean had been part of Shine for a number of years and had covered the Belfast area. We thank Irene for all her service to our Members. Sheila McCarney who covered the Western Trust has also left Shine. Many of our adults will have met Sheila at the ‘Mind Your Head’ events which were held across Northern Ireland. We wish Irene and Sheila all the best in the future. We have also had to reduce the hours of some of our remaining staff. This has meant that we have had to review how our service works. Where possible we will use telephone/email or skype/ facetime to make contact. We will also ask, where possible, that meetings can be arranged in more central areas, to help minimise staff travel time. Please bear with us as we go through this process.
Changes to contact details
John Miller, Ben Shanks, and Cathy McKillop
Corbin’s Family Event
Jim Jameson held a coffee morning, fun walk and evening event for Shine and raised £2,140.
Future Events... Outing to the Zoo
Fancy a day out? Like animals? Why not join us for a day trip to the Zoo? Wednesday 12th August, 10.30am. For further details, contact Dolores Black or Pamela Dickey (see the side panel for their details.)
Parents Support Groups
We hold parents support groups every three months in Antrim, Belfast, Bangor, and Lurgan. For further information, please contact Dolores Black or Pamela Dickey (see the side panel for their details). 4
As many of you will be aware landline numbers are no longer in use, so please contact staff on their mobile numbers or by email on the following: Cathy McKillop, NI Director Shine E: cathy.mckillop@shinecharity.org.uk T: 07762 574861 Dolores Black E: dolores.black@shinecharity.org.uk T: 07816 966866 Catherine McCurry, Education Adviser E: catherine.mccurry@shinecharity.org.uk T: 07789 616486 Marie McGonnell, Health Adviser E: marie.mcgonnell@shinecharity.org.uk T: 07789 616420 Janet Davidson E: janet.davidson@shinecharity.org.uk T: 07764 969747 Pamela Dickey E: pamela.dickey@shinecharity.org.uk T: 07816 966863 Postal Address: Shine Northern Ireland, PO Box 132, Cushendall BT44 OWA If you haven’t already joined us on facebook, ‘like’ us today at C facebook.com/ShineNorthernIreland