Interconnections Worldwide

Working internationally to share information, help build knowledge and support teamwork around babies, children and young people who are disabled, marginalised or vulnerable

The home of Team Around the Child (TAC) and the Multiagency Keyworker

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Emma - one of the 'very special children of 2002'. Please tell us your family story.

sisters5Emma's mum and dad said I can put their story on the website to encourage other families to write.

Peter Limbrick is collecting stories of children born in England in the same year as the prime minister's disabled son, Ivan. To see why I am doing this please click here. 

Emma was born in June 2002. Confirmation of her condition came a week after she was born: translocation Down Syndrome was her diagnosis.

Daddy is originally from the Caribbean and his initial thoughts were that she would be taken and placed into an institution. However, he was amazed and thrilled that this was not to be the case.

Emma has none of the health issues usually associated with people with Down Syndrome and this was to make her early years more manageable.

Attending mainstream nursery and primary school, we have just been through the most stressful months due to our efforts to find an appropriate secondary school so that Emma could continue the positive education she had received so far. Mainstream schools were saying she needed too much support and special needs schools were saying she was too able to meet their criteria! Surely it shouldn't be too much to ask for: an inclusive, mainstream secondary school?

This is one challenge we believe we have now resolved but frustrating because there are others we now need to pick up once more... Social Services, NHS. Which do we tackle first?

I called in Social Services as both our younger child and I are regularly the targets of Emma's aggressive behaviour. The call was placed in May 2011 and, to date, we have received assessments but no support... Depressing and inaccurate reports have been written and appointments not kept.  All in all a really weak and ineffective service leaving us feeling let down "big time".

NHS well...? Let's just say there's no hope... I don't want to depress things!!! Shambolic is all that I can say.

Emma is adorable and doing extremely well but no thanks to systems, purely down to pure hard graft and persistence from family. This is not a life to recommend, but would we be without our gorgeous girl.... NO WAY!

She truly is amazing and a must to meet. She will positively change anyone's view on disability and, in particular, Down Syndrome.

(This girl needs her privacy so we have not used her real name.)

If you want to write your family story, please get in touch and I will answer your questions. There are some notes here. 

Please circulate to families and parent networks if you can

Peter Limbrick

E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Tel: 01497 831550

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Public meetings in Wales to discuss changes to the UK benefits system

walesFriday 7 September, 10.30am until 12.30pm. 

The UK government wants to change the way that many people with a learning disability get their benefits.  This will mean replacing Disability Living Allowance (DLA) with a Personal Independence Payment (PIP). 

They also plan to bring in universal credit (UC) to replace all means tested benefits, like Employment Support Allowance (ESA), Job Seeker's Allowance (JSA) and Tax Credits.  

This could mean that many people who now get DLA may miss out in the future. 

We want to use these meetings to explain these changes and to talk about what this will mean to people with a learning disability and their families in Wales.   

If you wish to come please e-mail This email address is being protected from spambots. You need JavaScript enabled to view it. or call 0808 808 1111

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Families and Disabilities: Implications for Policy and Practice. Call for papers.

call_for_papersIt is estimated that one in seven people globally lives with some form of disability.

Guest Editors: Anne F. Farrell and Gloria L. Krahn

The past half-century has witnessed enormous paradigmatic shifts in laws and policies that have greatly impacted individuals with disabilities and their families. People with disabilities are not only children in families; they are spouses, partners, parents, and wage-earners.

To promote contemporary understanding of the relationship of disability with the development and well-being of children, adults, and families over the life span, Family Relations is planning a "Special Edition" focusing on families and disabilities from interdisciplinary perspectives. 

For a complete description go to: http://www.ncfr.org/sites/default/files/downloads/news/families__disabilities.pdf

Please direct inquiries to This email address is being protected from spambots. You need JavaScript enabled to view it..

Deadline for Paper Submission:  December 15, 2012

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Contact a Family's SEN National Advice Service deals with parents' top worry and proves its worth in first six months!!

cafop2Nearly 2,600 people who care for children with SEN or additional needs got in touch with Contact a Family's new SEN National Advice Service in its first six months to get advice and information about their child's education.

The high demand for Contact a Family's SEN National Advice Service echoes findings of a survey carried out by the charity earlier this year which showed that their child's education – both now and in the future – was the main concern of parents and carers.

Nearly half (46%) of the enquiries handled by the charity's expert SEN advisors were  from parents worried about lack of support in school for their child's additional needs, and wanting to know more about the procedures for getting extra help in school, including the statementing process.

Nearly a third of people (28%) contacting the SEN National Advice Service wanted more information about the appeals process and almost one in five people (29%) wanted advice and help about either official or unofficial exclusions of their child from school. 

Contact a Family established the SEN National Advice Service with funding from the Department for Education. It forms part of the charity's integrated helpline and online service for families of disabled children.

Parents or carers looking after children with SEN or additional needs who need advice and information about any aspect of their child's education can call Contact a Family's SEN Advice Service through its confidential, free by telephone line 0808 808 3555,

or email: This email address is being protected from spambots. You need JavaScript enabled to view it. 

or online http://www.cafamily.org.uk/advice-and-support/sen-national-advice-service/

Questions and queries can also be posted on the charity's Facebook page www.facebook.com/contactafamly . The helpline is open Monday to Friday, 0930-17:00.

 

share your information  Cartoon © Martina Jirankova-Limbrick 2011