Parents Stories News Page

Conductive education helps people with movement disabilities improve their co-ordination and have increased independence in their daily lives. There are 2 conductive education programmes here in Northern Ireland that I have heard of recently, and I went to visit one centre. There is the Lighthouse trust summer scheme, run by a lady who started the scheme for her son, and she raises all the money for it herself. It runs every summer in Donaghadee. You can contact her by phone or email (Joan Bruton 00353872241589 or info@lighthouse-trust.org). She is extremely nice and approachable. Applications are taken from January each year. The programme runs for one month, one in July and one in August and it costs roughly £200 per week.

The second one is in Bangor and is called the Sycamore Centre. It is relatively new and I haven't been able to get any more information on it. I have a phone number and an email for Jillian (07513279179 or jill_beck@hotmail.co.uk). As far as I know they run summer programmes and also treatment will be available from September Mon to Sat.

There are 2 different types of phsyio treatment, CE and Bobath, and most therapists here use Bobath. It seems they are different approaches, but both work well and if something works for your child then that's all that matters. I would be interested to hear in opinions and experiences of parents who have tried these schemes or even other treatments.

Disabled Persons Rail Card

This card is available to all people with a disability in the UK and it entitles you and a carer to a third off rail travel. It costs £18 per year or £48 for 3 years. If you are a young person under 15 then it is already cheaper for you to use the trains, but with the rail card you still get a third off the ticket price and so does your carer. If you are a regular train user then it would be well worth the money. You can apply online at the website below.

Boost Membership

Boost is the Belfast Leisure Membership, which entitles you to use all the council owned leisure centres in Belfast. There are 3 options, you can either get the Boost card which will entitle you to reductions, Big Boost which is around £18 per month and will give you unlimited sauna, gym and pool membership and then Maximum Boost for £30 which gives you much more variety of activities free of charge. There is also family and Means Tested Benefits rates for membership. If you are a disabled user and a Boost Member, and you need a carer to attend activities, then your carer will be able to get in free. You can pick up a form from any leisure centre, or phone to have one posted out. There is also more information available online about it.

New Disability Aid Website

The owner of this business sent me this info about a new site that sells disability aids and also has a really goods children's section. It includes stuff like writing and bathing aids as well as the usual stuff like wheelchairs and cutlery. Delivery is free in the UK.

Disability Action Exhibition (22/5/08)

Disability Action are holding an exhibition in Lagan Valley Leisureplex, Lisburn on Fri th and Sat 7th June, from 10-5 pm both days. There is no information about if it's free or not, but if anyone is interested, you could phone Disability Action directly.

Direct Payments survey

Carer's UK families and carer's in receipt of direct payments to take part in a survey about the service. All participation is treated with confidence. Click on the link below to fill the survey in.

rOUGH gUIDE TO aCCESSIBLE bRITAIN (19/5/08)

The well known travel guide company has teamed up with Motability to bring out the Rough Guide to Accessible Britain. This is the first time that Rough Guide have brought out an accessible guide to anywhere, and each listed facility (hotel, tourist venue or leisure facility) have all been properly checked out. The publication includes reviews, maps and useful information. It costs £6.99 or if you are a blue badge holder you can get if for free (you have to pay p&p of £1.99). To order call 08009537070 or go to www.accessibleguide.co.uk

Travel Website

I have found a great new website for people with various mobility problems who want to go on holiday in Europe, the USA or Thailand. The company is called Access at Last and it only includes accommodation that has at least 1 wheelchair accessible room, whether it is half board, full board or self catering. Includes a selection of rental properties too.

A parent has been kind enough to send me a short review of Castle Espie in Co Down. If anyone is out and about over the summer and wants to let others know how good or bad a place is, use the form on the days out page or the contact page to get in touch.

New Story (7/4/08)

A father of a child has been kind enough to get in touch and to share his story, and also to tell me about a new site he has set up. His son died 4 years ago, but the father wants to pass on the information that he and his family learnt from looking after his son. The site is called Snowball and it aims to advise families of brain injured children on alternative therapies that could be beneficial to them. It's still under development, but it already has a huge amount of information on it. The services are not free, but it is a not for profit organisation. You can also buy the books the father has written on both Autism and Cerebral Palsy.

Activities in Bangor

A family member of an adult with Autism who lives in Bangor has got in touch, asking if anyone has any suggestions for activities. The person in question goes to a day centre but his needs are not being met. If anyone has any ideas please get in touch and I will pass suggestions on.

Autism Meeting

A parent has got in touch with details of a public meeting being held in Belfast in May. The venue is Mary's College, 191 Falls Road, Belfast on Friday 2 May 2008. It starts at 7pm and costs £10.00. If you would like more information then use the email link below. The title of the lecture is "Autism and the Environment", it is open to parents and professionals, and it is being given by Paul Shattock.

Parents for Opportunities (15/3/08)

The Lisburn based group that raises funds for afterschools activities for disabled children and young people has got a new website. Click on the link below to take a look.

Door to Door Service (20/2/08)

Most people will probably know about this scheme, but I thought I would put this up in case some don't. The Door 2 Door Transport Scheme is a new local urban transport service for people with disabilities who would have difficulties using public transport.

Door 2 Door Transport can take individual to and from their local services, and facilities e.g. to work, to your local shop or your town centre, to the Bank to an appointment such as your doctor or dentist or just to visit friends or family. The aim of Door 2 Door is to help those with disabilities become more independent and to encourage people to get out and about.

There are currently 27 towns and cities that have access to Door 2 Door transport services.

Services run from 7:30 a.m. to 11:30 p.m. every day of the week. You can use the services if:

Home Childcarer Approval Scheme

Home childcare is a new form of approved childcare introduced by the Government to allow parents to have their children cared for in their own home and receive financial help towards the cost, through tax credits or childcare vouchers.

This new scheme is particularly beneficial to families with a disabled child, who have found it difficult or impossible to find suitable childcare. The family must meet criteria before being eligible to use this scheme, such as be in receipt of higher rate DLA. The Home childcarer must be a registered childminder and also be approved as a home childcarer by their local health authority.

Because this is a new scheme, there may not be that many approved in your area, but hopefully in time the numbers will increase.

To find out more about approved home childcarers in your area call you local early years team, or you can look up online.

Northern Ireland Tourist Board

The tourist board is looking to improve the information it gives to disabled tourists, either living here or visiting from overseas. So far they have no one source of information to give to those with a disability. They have contacted Disability Action to see if anyone would be willing to meet with a representative and give their opinion. If you are interested, contact Margaret Matthews at Disability Action.

Lisburn Access Group Survey

The Lisburn Access Group are working on getting feedback on access in the Lisburn area. If you live there and wish to participate, email Jennifer Moore to volunteer. It involves using a checklist when going shopping or out to eat in the city, or using facilities such as the Leisureplex or the Civic Centre, and the results will be given back to the service provider in an effort to improve overall access. This is open to anyone with a physical, learning or sensory disability.

New Story (29/1/08)

There has been nothing much to report so there hasn't been any new information on the news page. I have been given a new story about a child with ASD (Autistic Spectrum Disorder) and it is now on the stories page. I would like to thank Rose for sending me the story. Go to her story

Bulgaria's abandoned Children (Posted 24/11/07)

If anyone saw the documentary on BB2 last week about Bulgaria and how they treat children with disabilities, then you will definitely be interested in this petition. If you didn't see it, then I urge you to sign this petition anyway, because it was so shocking that I haven't been able to get it out of my mind. In Bulgaria, in 2007, children with any sort of disability are placed in orphanages from a young age and they stay there until they are adults (if they don't die first), when they are moved to the adult version. They are given no education, no stimulation, love or even conversation by the staff that are paid to look after them. If you went to the zoo you would see animals that are treated better. Healthy children are put in there then they are mistreated and malnourished for years and eventually they either die or go mad. You wouldn't recognise them from the children that went in. Its really hard to believe that Bulgaria was allowed to enter the EU at all. Please follow this link and sign a petition to do something about this abuse of human rights, and look out for it being on again as it is worth watching, even if it is really disturbing.

All of these news items are from this months Able magazine so apologies if you have read them already.

Carers Allowance Update (posted 6.11.07)

In response to the campaign by Carers UK, Peter Hain (Work and Pensions secretary) has announced that the amount you can earn before you loose your carers allowance is to go up. At the moment it is £87 per week, and it is to go up to £95. This is after tax and Nat ins deduction.

Changes to the Blue Badge Scheme

In order to combat fraud, the blue badge is being changed. It seems that some people photocopy and laminate existing badges, or relatives of badge holders misuse them when they are not in the car with them. The new badge will have a hologram on it so that it will be harder to copy, and also a serial number that will identify if the badge holder is male or female and wardens will therefore find it easier to spot fraudulent use.

Asda

The supermarket chain Asda are running a pilot scheme to tackle the abuse of disabled parking bays at their stores in Merseyside, England. If it is successful, it will be extended nationwide. People who misuse the bays will be fined £60.

Changes to the Cinema Exhibitors Card (posted 5/11/07)

Carrie Walters from the organisation has been in touch to inform us about a few changes to the card.

Northern Ireland Cerebral Palsy Register (20/9/07)

The NICP Register has now got a website. I have put it on the links page as well. Thanks to Jackie Parkes at QUB for passing on this information to me.

New Parents Site

I have come across a new parent run site based in England. The family in question have twin boys, both with Cerebral Palsy. The site has loads of information about benefits and education as well as holidays and things to do. Take a look

Sparcle Project

The project has completed it's study into the quality of life of children with Cerebral Palsy in Europe. Their findings indicated that the quality of life is almost as good as non disabled children. I am not able to attach the reports due to copyright but it will be available soon on the website. Interestingly, Northern Ireland had the highest incidence of non response to the questionnaire - 51%!

CP Superheroes site

Jackie Parkes also passed this website on to me. It has been set up by 3 young people with CP (at this time i don't know where it is based) but there are games and fun things to do on the site. It would be a good site for a child or young person to visit and it is visually stunning.

Activities in Co Fermanagh (posted 7/9/07)

I have been given information on inclusive and special activities or children and young people in Co Fermanagh. There is an inclusive sport and leisure officer there, who works for DSNI. Her name is Roisin Henry and she organises activities such as aftershcools, youth clubs, swimming, canoeing and summer schemes. She has also passed on some information on what is happening in the near future.

Roisin will be passing on information as it comes up to me. I have also put some information on the activities page

Mental Health Day

Carers in the Lisburn area are invited to a talk being held at the Balmoral Hotel on he 11th October at 10.30. It will last about 2 hours followed by a light lunch. There will be a talk about how to look after yourself. If you are interested contact Joan Scott, the carers development officer on 028 97565456

A bit of advice (posted 1/9/07)

A mother has got in touch recently looking for advice from other parents who have taken their child out of a special school and put them in a mainstream primary. Her daughter has moderate to severe learning difficulties and she wants to move her nearer her own home and also to a school with better educational prospects. She would love to hear from other parents who have done the same thing, or who has a child in mainstream primary school to see how they are coping. If you are interested in getting in touch, please use the contact page or email link. You do not have to give your name or any personal information.

Another new story

It seems Laura's story has really hit a nerve and I have had quite a few responses from it. There is also another new story, very similar to Laura's, which makes me sad and a bit angry that this is happening. Have a read and see what you think.

Co Tyrone Tourist Information

A parent has submitted 2 reviews of tourist places in Co Tyrone, which is great as its the area I could get nothing on. If anyone else has been out and about over the summer and found the access to be good or bad, feel free to get in touch and submit a review.

Wheelchair wheel covers (Posted 17/8/07)

Someone passed on information on where to buy decorative wheel covers for wheelchairs so I thought it would be a great site to add. There is a wide variety of wheel covers and also tyres to customise the chairs and add a bit of colour to the boring old NHS wheelchairs. (no disrespect intended!)

New story

There is finally a new story to share on the Parents Stories page. Feel free to get in touch and tell me your opinions on the subject raised.

Research Study (Posted 6/8/07)

A mother has got in touch with me looking for volunteers to take part in a research study on the subject of disability and friendship. She has a daughter who is disabled and attends a mainstream school, and she is undertaking this study as part of a university course. All information will be confidential and anonymous. She is willing to travel to meet participants either at home or somewhere convenient. If you are interested please email me and I will pass on your contact details.

Disability Living Foundation Survey (Posted 27/7/07)

The Disabled Living Foundation is conducting a survey of parents of disabled children about how they find information on equipment for their child. They are looking for parents to answer a short survey of 14 questions that will take about three minutes to complete. All survey responses are strictly confidential. To take part in the survey visit:

Down and Lisburn Trust Carers Information pack

If you live in the Down and Lisburn Trust area (now called the South Eastern Trust) you can download their information booklet for carers from the website. It is full of useful information on services in the region and also gives information on support groups. Click on the link below to download.

Joan Scott

Joan is the Carers Development Officer for the SE Trust and welcomes contact by phone, email or post from any carer in the area. If you would like to contact her directly she is available at the following address:

Joan Scott
Carers Development Officer
Ballynahinch Community Services
45-47 Ballynahinch Street
Ballynahinch
BT24 8DN
Tel: 028 97 565456
Fax: 028 97 562299

Activities page update

I have updated the activities page with 2 organisations that provide support for disabled children and adults. I am interested in adding to this page so if there are similar organisations in your area please let me know

Carers UK campaign

Carers UK have launched a campaign to tell Gordon Brown about the poor financial situation of many carers in the UK. You can go to their website and fill in a form, all of which will be presented to him later in the year. Its a chance to maybe improve the quality of life for carers, as it seems sometimes we are being punished, nor rewarded, for looking after our disabled relatives. Click on the link below to fill in the short form

Carers UK Campaign (i think this form has now been taken off as the deadline was up)

Carers Week event in malone house (posted 14/5/07)

If you are a carer in the Down and Lisburn Trust area Joan Scott is organising a free meal to be held at Malone House on the 12th June between 7pm and 9.30pm. Transport is being arranged from various pick up points around the trust area. Phone Joan Scott on 97565456 before the 18th May to secure a place.

McElmeel Mobility Services (Posted 7/5/07)

I have put some information about this company in the useful links section as they are specialists in providing wheelchair accessible vehicles and also carrying out adaptations to existing vehicles. Follow the link to find out more about what they do.

Scope Communication Survey (posted 2/5/07)

As part of the Time To Get equal campaign Scope are keen to record the experiences of people with communication impairments so they can use this evidence to improve communication aid provision and support. If you would be interested in completing a survey form or would like to know more about this part of the campaign visit:

Swimming Lessons(posted 28/3/07)

Free special needs swimming lessons are taking place at Queens PE centre as part of the teacher training program on the 14th and 15th of April. Phone Paul Rodgers to find out more on 07733100900

Poster (posted 11/2/07)

There is now a poster available for the site that you can download and put up in your local doctors surgery or child development clinic. I can't travel all over NI to do this so if anyone fancies doing this feel free. It will also be available on the home page

Artability NI (posted 24/1/07)

I have now got all the information for this centre so you can visit the full page or the summary on the activities page

AutismNI (formerly PAPA)

Linda Callaghan from AutismNI got in touch before christmas and asked if I would be interested in putting some information about autism on the site. I went to meet her this week and she gave me a bit of information and wrote out a paragraph for me to include in the useful links section. If anyone has anymore information on this subject just get in touch through the contact me page and I will gladly put it on. Click here to go to the useful links page and read what Linda sent me, or go directly to their website

First Aid Training (posted 14/1/07)

If you are interested in finding out more about first aid, especially if you have a child who has a condition that causes them to choke, stop breathing or have fits, then you can be trained in your own home for a small fee by a professional. Paul Berry runs his own first aid training business and will come out to you on a one to one basis or for a group. His contact details are below and he has supplied 2 information flyers that can be downloaded. He assures me that his fee is very reasonable and affordable.

Parenting Special Needs

A 6 week course is being run at the downtown centre in Lisburn on parenting special needs children. It starts on a Wednesday in January (date to be confirmed) and is free of charge, although there may be a small fee for course materials. If you are interested in finding out more, contact Margaret Bailie

The Lisburn Downtown Centre
49 Market Square South
BT28 1AG
02892672052
downtowncentre@msn.com

Artabiltiy NI

The art ability centre is located off the Shankhill Road in Belfast and provides after school activities for children and young people with a disability within a 3 mile radius. Michelle from the centre is going to give me much more information soon but if you are interested in finding out more in the meantime, you can get in touch with her

Artability NI Ltd
137 Agnes Street
Belfast
02890244240
michellemccloy@hotmail.com

NCP parking news (Posted 27/11/06)

I recently attended a meeting held by NCP about the new Traffic Attendants (TA's) and what the new laws mean for Blue Badge Holders.

Parking offences are now decriminalised, which means that the police no longer have the responsibility of giving offenders tickets. They still have some responsibility for certain parking offences, but the majority will now fall to the TA's.

NCP has the contract and this covers all on street parking and also parking in NCP or Road Service car parks. There are 111 TA's in NI, which is a higher number than before and means better coverage of offenders!

They have increased powers and can now ask Blue Badge holders to show their badges if they feel that they the badge is being used illegally. If the badge isn't shown then the driver will get a ticket. Blue badge holders will not be clamped under any circumstances.

The fee for a parking violation will be £60 but is reduced to £30 if paid within 15 days. NCP states that TA's do not have any financial rewards for issuing the most tickets, nor do NCP have a target to issue a certain number of tickets. Its main aim is to clamp down on abuse of Disabled parking bays and persistant offenders. TA's at present will be on the streets all day including Saturday's, with a reduced service on Sunday and in the evening. Plans are to extend this to all night as well.

Carer's Assessment

All carer's in the UK are entitled to a carer's assessment by a social worker. This takes about an hour and you have to fill in a form with your social worker, who then will hopefully help you identify areas that you need help with, if any. You can request one at any time, even if you are already registered in your local area as a carer. There is no guarantee that you will get all the information you need or the support you deserve, so ask for an assessment and see what there is going on for carers in your area.

Carers Uk

Carer's UK are carrying out a poll to find out about the standard of living of carers in this country. You can fill in an online questionnaire by clicking the link below.

Benefits check

This service is available from Contact a family. Phone the number below to find out if you are getting all you are entitled to.

Carer Health Fair

This event is being organised by the Down and Lisburn Trust, and is taking place on Monday 4th Dec in 1st Presbyterian Church, Market Square South, Lisburn between 10-2. Phone Joan Scott on 02897565456 to find out more

Grand Opera House (posted 12/11/06)

The newly refurbished Opera House has complete wheelchair access, which is a total upgrade from before as it is an old building with very limited access. The entrance is now to the right of the old door, and a lift goes to all floors. Only the Gods is unaccessible to wheelchair users. There are accessible toilets on all floors and the bars and restaurant is also fully accessible. Free carer's seats are available if you are with someone who needs assistance. When booking your seats, ask for membership (free) to the access for all scheme, which then stores your information so that you don't have to repeat the same information the next time you book.

Each year Carers UK holds a Carers Rights Day to put the spotlight on issues that are important to carers. This year Carers Rights Day will be held on Friday 8 December. On the website there is also information on getting the flu jab. It has become available to carers. Also if your child is prone to illness or has had pneumonia then they are entitled to it as well. Go to the website to find out more.

Lisburn Access Group AGM

This monday the 13th NovemberLAG will be holding their Annual General Meeting in the Lagan Valley Island Centre. Also taking place is a talk by Baywatch to bring everyone up to date with the new parking legislation and the campaign to end abuse of disabled parking. Anyone who wants to go should contact Irene Orr on 92673914/07989752537

Fleming Fulton Open day (posted 21.10.06)

Fleming Fulton school are holding an open day this wednesday 25th of October, and also are having a series of information talks the next day, Thursday the 26th. Contact the school for more details (02892613877). It would be a great opportunity to find out more about the school if you are thinking of sending your child there.

Cerebra Lending Library

The charity Cerebra have a lending library, and they have books on every conceivable subject relating to disability. You must be a member to get the books, but it is an easy process, and once you become a member you can borrow up to 2 books for a month. The book is then posted out to you and includes a slip to post it back with. Phone free on 080 32 81 159 to find out more.

Altered Images book

One book I have discovered is called Altered Images: Becoming Parents of our disabled children. It was written by parents belonging to a group called Ryedale special families, based in Yorkshire, England. I have enjoyed reading the book and would recommend it to others. Its available from the Cerebra lending library, though obviously I have it at the minute. But if you want it, phone up and ask to be put on the list for it when it becomes available.

Cerebral Palsy Register

There is a CP register in Northern Ireland, and Jackie Parkes, who is based in Queens, has kindly given me an overview of the register. It is confidential, and it is used to keep a record of how many people have CP, and if there are any changes to the prevalence. The register is also used to see how services can be improved. She welcomes contact from parents, and can be reached at the address below. Click here to see the overview of the register.

Northern Ireland Cerebral Palsy Register
Room 1.36
Mulhouse Building
Queen’s University Belfast
Institute of Clinical Science
Grosvenor Road, Belfast BT12 6BJ
Telephone: 028 9063 5045

Welcome to Holland

Some people may be familiar with this, but I think it is a very clever piece of writing and it sums up what its like to learn you have a child with a disability. Click here to read it.

Finally

I have updated the links page to include a few personal websites designed by other parents. They are all good, and I plan to add to them as time goes on. Click here to go to the links page.

NI4Kids (posted 5.10.06)

Kelly's story has been included in the September issue of NI4kids on page 10-11. Let me know what you think of the story. Click here to visit their website.

Forum

I have added a message forum to the site. its different to the guest book as it allows you to put up a comment or ask a question and then sit back and wait until someone answers (hopefully!) the link can be found at the top of the main page. There may be some ads on the page, but just close them and work away, its because its a free forum and ads are a consequence.

Disability Action

DA launched the Centre on Human Rights for Disabled People at the Wellington Park Hotel on Wed 27th January. The new initiative will be based at their office on the Airport Road in Belfast. The project aims to secure the human rights of people with disabilities in NI, which in many cases are not being recognised at the most basic level. They can provide legal advice if you feel human rights are being violated, and also they plan to lobby the new assembly to bring about a better way of life for those in NI affected by a disability. Its about giving people a voice, and making our society a better place for everyone.

Wheelchair Friendly resource

The RSPB at Portmore Lough Nature Trail, near Aghalee Co Antrim, have launched a new resource especially designed with those who have special needs in mind. It allows the visitor to find out about nature and to have fun. Pupils from 4 special schools helped to design this resource, and it can be brought to schools. I am not sure if it is open to the public but I am going to find out.

We visited this resource, but I was a bit disappointed. It literally took 2 minutes to get around, it is a little garden type feature with no explanation of what it is all about. It's pretty out of the way, so if you are from anywhere outside aghalee or ballinderry, it's really not worth going out of your way. Sorry!

conductive Education (12/8/08)