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

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European Blind Union calls for EU Council to back book treaty

 

EBU logoEuropean Parliament book famine event: EBU calls for EU Council to back book treaty

EBU Press release - Paris, 13 April 2011 

Millions of blind EU citizens face a "book famine" in which only a few per cent of books are converted to "accessible formats" they can read such as braille, large print or audio.

On the 13th April, the European Blind Union highlighted this situation at an event in the European Parliament in Brussels. The meeting was hosted by MEPs Berlinguer, Lichtenberger and Sosa-Wagner from Italy, Austria and Spain respectively.

Discussion focused on a draft treaty that the World Blind Union devised and which was tabled in 2009 at the World Intellectual Property Organisation (WIPO), a UN body based in Geneva. Most WIPO Member States support the proposal but the EU Council and Commission have steadfastly maintained that soft law "recommendations" and voluntary licenses are a "better" alternative. EBU does not agree.

Lord Low of Dalston, President of the European Blind Union, who attended the event, said afterwards:

 "The European Blind Union co-hosted this event to highlight the EU Council and Commission's opposition to a treaty that was proposed back in 2009 to help us get greater access to books for visually impaired people. The EU Member States always call for binding treaties to further protect the interests of intellectual property holders. We are just calling upon them to treat with this same level of seriousness the need for an exception to copyright to enable those with visual impairments to access books, and to support a binding law at WIPO when they next meet this June."

Unlike the Council and Commission, the European Parliament has been generally supportive of the treaty proposal. In November 2010 101 MEPs signed a letter from the European Blind Union to single market Commissioner Barnier, in favour of a treaty.

Luigi Berlinguer MEP, who co-hosted the event, maintained that the matter was a rights issue.

"It is not sufficient merely to sign the UN Disability Convention and say positive things about disabled people's rights. For the EU to live up to its commitments under the Convention, it should support the proposal for a WIPO treaty for blind and other print disabled people."

For further information, please contact:

Gary May, European Blind Union Information Officer

Tel : +33 1 47 05 38 20

Fax : +33 1 47 05 38 21

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

Challenging behaviour: a guide for family carers on getting the right support

CBF logoThe Challenging Behaviour Foundation is delighted to announce that three new 'At a glance' guides aimed at family carers supporting people whose behaviour is described as challenging are now available. There are separate guides for adults, teenagers and children. 

The guides have been developed in collaboration with the Social Care Institute for Excellence (SCIE).

 

The guides help family carers to:

  • Understand what good support and services look like
  • Work in partnership with staff who are involved with the family
  • Find information on what to do and who to contact if the family's needs are not being met

To download the guides visit:

www.scie.org.uk/publications

or

http://www.challengingbehaviour.org.uk  

ACT - New resources to support the withdrawal of a child's life-sustaining treatment

 Cover image

 

ACT launches new resources to support the withdrawal of life-sustaining treatment within a children's palliative care framework

Withdrawing any life-sustaining treatment is one of the most difficult areas of clinical practice that professionals will face, and finding the right way to open up this dialogue with parents, children and young people with life-limiting or life-threatening health conditions can feel very daunting.

UK children's palliative care charity ACT has launched two new resources to support those professionals caring for children at their end of life, and to guide parents who are faced with thinking about the right critical care choice for their child. Both are supported by the Department of Health. They are: 

A Care Pathway to Support Extubation within a Children's Palliative Care Framework

www.act.org.uk/extubation

A parent's guide: Making critical care choices for your child

www.act.org.uk/criticalcare

ACT's Care Pathway to Support Extubation within a Children's Palliative Care Framework provides professionals with the tools and resources they need to support a child and their family throughout the unique care journey before, during and after the withdrawal of life-sustaining ventilation (also known as extubation) and other treatment where this is their chosen end of life option. It has three key stages to guide the professional through the pathway:

 ·         The journey towards a decision to withdraw life-sustaining ventilation.

·         The practicalities of withdrawing life-sustaining ventilation.

·         Care at the time of death.

ACT's new leaflet for parents and families, A parent's guide: Making critical care choices for your child, is designed to complement the new extubation care pathway for professionals. ACT hopes that the leaflet will help and support families to make informed and realistic choices and decisions about treatment and critical care choices for their child.  It's been written for parents who have been told:

 ·         That their child's prognosis has changed and their child is now at their end of life phase.

·          There has been a change or deterioration in their child's health.

·         Their child's treatment is no longer working, or that the treatment might cause more harm than benefit to their child.

·         Further treatment may be unbearable for their child. 

·         There is no treatment available for their child's condition.

The parent's guide has been written in a simple question and answer style format, and includes some of the key questions or concerns that parents may have regarding critical care. These include:

 ·         What are critical care choices?

·         What is an end of life care plan?

·         Will my child carry on getting the care and support they need?

·         Do I have a choice in my child's critical care?

·         How are critical care decisions made?

·         What if I change my mind?

·         What if my doctor and I do not agree?

There are sections designed to help parents think about the realistic choices for their child and a series of prompts are included to help parents talk to their doctor or healthcare team. The leaflet also includes a directory of useful support agencies and glossary of medical terminology to help guide parents through the jargon sometimes associated with critical care.

ACT hopes that this new leaflet will be available to parents in a range of clinical settings: including neonatal and paediatric intensive care units, children's hospices and specialist health services.

A parent's guide: Making critical care choices for your child can be downloaded free at the website above

or you can order free printed copies by emailing: This email address is being protected from spambots. You need JavaScript enabled to view it.

or calling ACT on 0117 916 6422

 

Conductive Education in the UK – one step forward...

 

front-coverNews item 1

From Gillian Maguire

 

Conductive Education Press has been established to record, explain and create information about Conductive Education. So far three titles have been published, the latest being Intelligent Love which reports parents' actions to bring their children up 'conductively'

 

Further information can be obtained from the website www.cepress.org

 News item 2

 From Andrew Sutton -

 The magazine Special Children reports –

The UK's only degree course in conductive education (CE) is set to close after 17 years. The BA (Hons) course, validated by the University of Wolverhampton and delivered by the Birmingham-based National Institute of Conductive Education (NICE), will see its last intake start in September 2011.

Kit Field, dean of the School of Education at the University of Wolverhampton, said:

'The decision to close the programme, while regrettable, was taken in line with the recent Higher Education Funding Council (HEFCE) student number cap imposed on universities in the UK. Demand for the course has not grown and an average of 12 students or fewer have annually started the course.'

 – (2011) Conductive Education course set to close, Special Children, April/May, page 6

The article also reports intention to find another university to validate the conductor-training course, and create an independent college of conductive education, exempt from future government higher-education changes, including increases in tuition fees.

share your information  Cartoon © Martina Jirankova-Limbrick 2011