Number 54 • January 2015



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Outdoor Network

Joe Gibson reports:


In September 2014 we had the latest outdoor week, this year in Denmark. Eleven deafblind people and their support staff had a great week in the North of Denmark where, among other things, we built a bridge over a stream on the beach, went fishing on the sea and climbed to the top of a huge sand-dune. All our dinners were self-made and one also self caught, and cooked over an open fire. There was lots of time to meet the new participants and catch up with old friends.

One evening around the fire we discussed the direction of the network. Each year the outdoor weeks have become larger and we talked about the pros and cons of this. We would like to include more people, but if we grow too big, it will be more difficult to administer and might not suite the participants. Perhaps several smaller events will be a better way forward. We also discussed where the week might be next year, and if it is possible to create a winter outdoor week.

There are also some virtual developments. DbI have recently given the networks some dedicated webspace on their website, watch for the new Outdoor Network Subsite on the DbI website: http://outdoornetwork.deafblindinternational.org We hope to be adding content to this soon!

We also decided to set up a Facebook group. This will be a place where members of the network can share stories of the amazing outdoor experiences happening all through the year, ideas for activities, and to publicise future events. This will be a private page so people will be free to discuss and share. All current members of the network will receive an invite to the group and if you are not currently a member and wish to join please contact


Joe Gibson (jgibson@sensescotland.org.uk) or

Kari Schjøll Brede (kari.s.brede@eikholt.no)



Siblings Network

Sabine Kersten reports:


I draw your attention to a new book recently produced titled: ‘The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults with Disabilities’, written and edited by Don Meyer and Emily Holl.

If you’re a teenaged or adult brother or sister of someone with a disability, then this book is for you. It offers a sense that you’re not alone. It includes tips on how to talk to your parents about plans for your sibling, a crash course in guardianship, medical and legal issues, and government benefits if you’re already caring for your sibling.

The book focuses on the top issues identified by siblings. It offers practical information and anecdotes about: statistics and research about siblings; younger siblings’ feelings; impact on your life decisions; caring for multiple generations; aging and disability; taking care of yourself; getting services and advocacy, and future planning.

This book will be very useful not only for siblings themselves, but also for parents, counselors, and disability service agencies.

As one sister wrote, “We will become caregivers for our sibling when our parents no longer can. Anyone interested in the welfare of people with disabilities ought to be interested in us.”

Therefore I do hope you all will read this book, and use it to get to know about us, our concerns, hopes and dreams for the future.

Copies can be purchased online from Amazon.com.
For more information about the Siblings Network, contact Sabine Kersten (siblingsnetwork@gmx.net)


A Glimpse of Our World

A collection of inspirational stories by young deafblind people published by the Deafblind International Youth Network


Young deafblind people live their lives in many different ways. Their choices and decisions are influenced by many things including where they live, their culture and heritage.

Being deafblind in a seeing, hearing world creates challenges. Are these dealt with in different ways in different countries?

The collection of stories provides a unique insight into how deafblind young people from around the world have succeeded in overcoming the many challenges they have faced.

All the money raised from the sale of the publication will contribute to future activities for members of Deafblind International Youth Network.


For copies of this book, contact Simon Allison (Deafblind International Youth Network), Simon.Allison@sense.org.uk


Mapping opportunities for Deafblind people across Europe

Lucy Drescher describes the work of the Grundtvig project which has been collecting data about the position of deafblind people across Europe.


We are now starting to get a clearer picture of the lives of the estimated three million deafblind people across Europe, as the result of a project funded by the European Union.

For the past two years ten organisations from across Europe have been working together to share good practice; develop ways to set standards and produce a questionnaire – the answers to which formed the basis of the final report. The group included Royal Dutch Kentalis1, Sense UK2, Sense Scotland3, Centre for Deafblindness and Hearing Loss (CDH)4, Catalan Association for Persons with Deafblindness (APSOCECAT)5, Austrian Relief Organisation for People who are Deafblind (OHTB)6, France National Resource Centre for Rare Disabilities–Deafblindness (CRESAM)7, Hungarian Deafblind Association (SVOE), Slovakian Association of Parents and Friends of Deafblind Children (ZRaPHSD) and Sense International Romania8.

The group based their standard setting and the questionnaire on a set of disability indicators (an indicator is a thing that indicates the state or level of something – for example, the number of children who complete secondary education indicates how developed a country is) that were developed by a group of academics called ANED for the European Union.

The indicators cover all different parts of peoples’ lives, such as personal and family life, education and employment. They also include things such as whether deafblind children have access to mainstream primary education and/or specialist support and whether deafblind people are entitled to communication support when they go to see the doctor.

These indicators were used to compile a questionnaire which we could use to ask each of the countries in Europe about the situation of deafblind people in their country. We sent out the questionnaire and received 27 replies from 25 countries.

The final report sets out the findings of the questionnaire and makes recommendations for the European Union, national governments, local governments and organisations working with deafblind people.


What did we find out?


A very clear issue that came out of the findings is that there continues to be a lack of recognition of deafblindness as a specific disability – and this has a detrimental effect on the lives of deafblind people in European countries. Here are some of the key findings:

Data


There is not enough information being collected on the numbers of deafblind people, their ages and whether they are male or female. Only three out of 27 states collect official data (i.e. census data) on the number of deafblind people in their population. In addition, organisations working with deafblind people are not collecting enough data on the people they are working with. Without this information it is hard for decision makers to know what funding they need to provide services for deafblind people in their area/country.

Home and family life


There are disparities in opportunities to participate in social and private life which impacts on deafblind peoples’ capacity to sustain family relationships. There are also inadequate accommodation options. Only just over a third of states provide deafblind people with the legal right to support for living in a place of their choice.

Choice and control


Restricted access to support in order to vote: While the majority of states have at least one form of support available to enable deafblind people to exercise their right to vote, access to this support is often patchy and only obtained at the request of the deafblind person or their family.

There is little consistency in the mechanisms for organisations representing deafblind people to feed into disability consultation processes.



Access to goods and services


There is a lack of comprehensively accessible services, with both physical and sensory accessibility. There is limited access to public transport in many places. Access to special aids and equipment is patchy and there is a lack of medical services specific to the needs of deafblind people.

Education


There are generally limited educational options for children.

Employment


There was generally a lack of information about employment. Very little information about the employment situations of deafblind people exists in most states – either because there are no requirements to record this information or because very few deafblind people are employed. In addition, support in the workplace is lacking or difficult to access.

Recommendations


In response to these findings, the report makes a number of recommendations at a European and national government level. This includes:

• Establishing a common framework across Europe for the collection of standardised data at a national level – in order to be able to compare differences and developments and the publication of data on deafblindness at a European level by Eurostat and others.

• At a national level the key recommendation is that governments recognise deafblindness as a specific disability and then agree on standardised census questions, to enable governments to collect data on the numbers of people with hearing and sight impairments. There is also a recommendation on the need for a specific budget for communication support, which should be seen as an essential service.
The project funding has now come to an end but the group is continuing to stay in contact and to take the issues raised in the report to decision makers wherever possible. In particular, recommendations are being taken to Members of the European Parliament and officials working in the European Commission.
If you would like a copy of the report or more information about the project go to the project website www.deafblindindicators.eu or email info@deafblindindicators.eu.
Lucy Drescher, Sense International Policy and Support Officer

Email: Lucy.Drescher@sense.org.uk



1 www.kentalis.nl. Kentalis is a large corporate member of DbI.
2 www.sense.org.uk. Sense is a large corporate member of DbI.
3 www.sensescotland.org.uk. Sense Scotland is a large corporate member of DbI.
4 www.dbc.rn.dk. CDH is a small corporate member of DbI.
5 www.apsocecat.org
6 www.oehtb.at. OHTB is a small corporate member of DbI.
7 www.cresam.org
8 www.surdocecitate.ro. Sense International Romania is part of Sense International which is a small corporate member of DbI.

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