Number 44 • June December 2009



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Network News

Acquired Deafblindness Network

Ges Roulstone

72 Church Street, Market Deeping

Peterborough, Lincolnshire PE6 8AL

UNITED KINGDOM

Tel: +01778 344 921

Fax: +01778 380 078

Email: ges.roulstone@sense.org.uk

Website: www.adbn.org

Charge Network

gail.deuce@sense.org.uk

steve.rose@sense.org.uk

Communication Network

Ton Visser

Viataal


Theerestraat 42

Sint Michielsgestel NL - 5271 GD

THE NETHERLANDS

Tel: +31 - 73 - 55 88 111

Fax: +31 - 73 - 55 88 994

Email: A.Visser@viataal.nl

Congenital Deafblindness in Adults Network

Dominique Spriet

QUENEHEM BP 53 Rue du Mont Saint Eloi

CALONNE RICOUART 62470

FRANCE

Tel: +33 - 3 - 21 61 16 16



Email: sprietd@aftam.asso.fr

EDbN


Ricard Lopez

APSOCECAT & APASCIDE

C/Almeria, 31 ATIC

Barcelona ESP 08014

SPAIN

Tel: +34-678-712-619



Fax: +34-678-782-600

Email: rlopez@sordoceguera.com

Website: www.edbn.org

Employment Network

Seija Troyano

Nakskovinkatu 8 and 9

78200 Varkaus

FINLAND


Email: seija.troyano@dnainternet.net

Interpreters Development Network

Mirjam Leusink

Past. Petersstraat 68

Rijssen 7462 MT

NETHERLANDS

Email: Mirjam.leusink@home.nl

Latin America Network

Sandra Polti

ARGENTINA

Email: Sandrapolti@yahoo.com.ar;
poltisan@ciudad.com.ar

Rubella Network

Nancy O’Donnell

Helen Keller National Center for


Deaf-Blind Youths and Adults

141 Middle Neck Road

Sands Point, NY 11050

USA


Tel: + 516-944-8900 x326

Fax: +516-944-7302

Email: nancy.odonnell@hknc.org

Siblings Network

Sabine Kersten

Koningsbeemdstraat 3

Lommel, B 3920

BELGIUM


Tel: +32 11 53 35 93

Fax: +32 11 53 35 93

Email: siblingsnetwork@gmx.net

Tactile Communication Working Group

Bernadette Van den Tillaart

15175 Prairie Road

South Solon OHIO 43153

USA


Tel: +1-740-426-6728

Fax: +1-740-426-6728

Email: bernadettevandentillaart@tiscalimail.nl

Usher Study Group

Marylin Kilsby

Sense


South East Regional Office

New Plan House

41 East Street, Epsom

Surrey KT17 1BL

UNITED KINGDOM

Tel: +44–845 127 0076

Fax: +44–845 127 0077

Email: Marylin.Kilsby@sense.org.uk



Acquired Deafblindness Network

Ges Roulstone reports


The co-ordinating group of ADBN held its Autumn meeting in The Netherlands on the weekend of 10th and 11th October.

The group agreed the 2nd announcement for the next ADBN conference to take placer in Aalborg Denmark on 29th September 2010 to 3rd October 2010 and undertook further work on the programme of plenary speakers.

Papers are now invited for 24 workshops which form an ever greater part of each conference programme. The group will meet on March 20 – 21st 2010 in Denmark to finalise the plenary and workshop programme.

In the meantime, because of changes to the working and personal circumstances of two of the members of the Co-ordinating group, two vacancies now exist and ADBN Co-ordinating group is keen to hear from suitably qualified professionals who would like to assist in the running of this very successful and influential network. Candidates should possess the following:

• A suitable background in practice or management of services for those with acquired deafblindness

• Fluency in English

• The ability to travel to meetings in different European cities twice yearly

• Time and energy to devote to real work towards continuing ADBN’s successful programme of bi-annual conferences


Please write in the first instance to Chair of ADBN, Ges Roulstone at ges.roulstone@sense.org.uk

Congenital Deafblind Network

Knut Johansen and Dominique Spriet report


A very productive meeting was held in Senigallia – 9 people attended along with the 5 regular members.

After a presentation of the work done, including the struggling and difficulties the network had encountered we came to the following conclusions:


1. In the past our work was focused on the congenital deafblind adults. However, it is evident that the condition of being congenitally deafblind is not linked to age. So we wish to be able to address questions concerning all the persons affected by congenital deafblindness. So we have named the network the Congenital Deafblind Network (CDbN).
2. The links to other networks are strong and important: communication, siblings, art and leisure, tactile communication, rubella, charge syndrome etc. We learn a lot from them.

The shape and model adopted by those “unique question” centered networks cannot be ours, as we have to address many other themes: such as sexuality and relationships, staff development, daily living skills, locomotion and mobility etc. We are concerned by the person as a WHOLE.

So we wish to able to put up on DbI’s website a structure centered network for hands-on people working directly with congenitally deafblind persons, to be able to share experiences and recommendations – not for solutions, but for sharing ideas. A mailing list is on the way and a frame on “how and why” to share things is going to be elaborated. Answering and sharing those questions might include the sharing of documents, experiences already existing, all sorts of information etc.
3. In the same line: being concerned about the person as a WHOLE. This network wishes in some ways to be the voice of the congenital deafblind persons within DbI, to speak for those who cannot do it by themselves directly.

We wish to put up a document that could have the DbI logo, presenting

• The UN declaration

• The European declaration

• The DbI definition of deafblindness with its different aspects congenital, acquired

This document could be completed by recommendations from the different networks concerning the congenital deafblind population.

Such a document could then be used in the different countries with the local cultural, economical and political adjustments to support the needs of the congenitally deafblind person.

I wish to thank each of the participants for an enriching morning and for the prompting they promised to do, in order to take this network forward.


Dominique Spriet,
Co-ordinator of CDbN

sprietd@aftam.asso.fr




CHARGE Network


Beatrice Zoppi reports

The Charge network met in Senigallia. Three presentations were given by Steve Rose (UK); Andrea Scheele (Germany) and Gail Deuce (UK)

Professionals from different countries attended, committed to supporting children and young people with CHARGE Syndrome and their families.

A desire was expressed to develop an interactive site linked to the current DBI website. It was agreed that there is a need to identify a number of clear statements to clarify what the group is about.

A task group was identified and they agree action points as well as this report for DBI Review to promote increasing membership in this Network.

Please, if you are interested to share ideas about how to provide a better support to this population contact us.


The task group is:

- Martha Majors (USA)

- Andrea Scheele (Germany)

- Alison McWilliams (Australia)

- Beatrice Zoppi (Argentina)

- Gail Deuce (UK)


Beatrice Zoppi, Argentina, November 2009. (beazoppi@yahoo.com.ar).

Siblings Network

Sabine Kersten reports


The DbI European conference in Italy was very success and may prove to be a turning point for the Siblings Network. During this conference I had the opportunity to give a plenary lecture about brothers and sisters and the impact deafblindness has on their lives. I spoke about the relationship between brothers and sisters in general, about the positive and negative consequences. I also talked about the impact having a brother or sister with special needs has on the lives of the siblings, about their need for information and about the future when parents can no longer take care and brothers and sisters have to take that responsibility.

It made a lot of people (parents and professionals working in the field) aware of the special situation in which we, as siblings, grow up.


Network morning

We also had a network morning, during which we had the opportunity to present a programme to interested delegates. In Italy, there is a group of adult siblings who meet regularly to talk about their experiences and to support each other. We had an interview with three of them. They told us that joining the group was not easy in the beginning, but as they came to know each other they felt this contact really helped them to deal with some of the issues they came across.

Then there were people working for various organisations telling us about services they offer to siblings. There are some organisations who do offer support, mainly by offering a weekend filled with fun activities to siblings.

A small group of people (parents and professionals) came to our morning. With them we had a discussion about services that could be offered to siblings of different age groups.

As a result of all this, we are now thinking of activities we can plan in the coming year(s).

As mentioned before, siblings do have a need for information. Therefore we will focus on this need by developing information on deafblindness and siblings issues for children which we be age appropriate.

From 27 July – 1 August 2010, the family conference “Listen to me” will take place in Olocouc in the Czech Republic. This will be a wonderful opportunity to meet families and share experiences. And we will try to be present there as well.

I am looking forward to your comments or ideas so we can futher develop the Siblings Network.


Looking forward to hearing from you!

Sabine Kersten

siblingsnetwork@gmx.net


DATE FOR YOUR DIARY…


Listen to me!

Family Conference

Will be held in Olocouc, Czech Republic

27 July – 1st August 2010




Usher Study Group

Marylin Kilsby reports


About twenty-five people attended this Network Morning, including several people with Usher as well as professionals from various European countries. After an introduction on the various Types of Usher led by my colleague, Tamsin Wengraf and a summary of advances in accessible computer and mobile phone technology, we welcomed Kerstin Möller from Sweden, who presented her own research on the sociological side of Usher. Kerstin then metamorphosed into Professor Claes Möller, also from Sweden, who was unable to join us. “Claes” gave us information about the latest medical research and treatments for RP which may be possible in the not too distant future.

We then welcomed Riitta Lahtinen from Finland, who gave a fascinating introduction to social-haptic communication within the family. She and her partner, Russ Palmer, demonstrated what haptic communication is about and how it can be used to inform deafblind people about their environment as well as its role in general communication. Social-haptic communication is becoming ever more widespread because of its usefulness as a communication tool for people with a dual sensory loss.

Finally, we had two contrasting presentations from Usher people themselves. Russ Palmer from the UK, who is a musician and music therapist, talked about the challenges and advantages of living with a cochlear implant. He described what it was like to have the cochlear implant and how it had helped him, especially in his musical career. Russ has brought out a new CD, “Warm Summer Days”, which demonstrates his very pleasant singing voice as well as his remarkable guitar playing.

Our other Usher presenter was Francesco from Italy. Francesco has Type 1 Usher and uses hands-on signing to communicate. He gave a moving account of his life journey and stressed how important communication is to him. Francesco is always cheerful and positive, a really good example of how life as a deafblind person does not need to be dull.

The Network Morning finished with a brief discussion (time had run away with us!) on the future of the Network and whether an e-group could be a way forward. The general impression was that an e-group would be a good idea, with a separate section for professionals as well as a general e-group.

We invited everyone at the group to the next full Usher Study Group, which will be held on 27 and 28 September 2010 as a pre-conference to the ADBN conference in Aalborg.


Marylin Kilsby


JOIN US…


if you would like to contribute or wish to join us for this special event
The Usher Study Group

27th and 28th September 2010

A pre-conference to ADBN Conference in Aalborg Denmark


Rubella Network

Nancy O’Donnell reports

About 25 people participated in the Rubella Network meeting at the DBI European conference in Senigallia, Italy, the morning of September 25th. This network is interested in the broad range of issues around rubella, including immunization, health, diagnosis and quality of life. It is open to anyone who is interested in this topic.

According to the World Health Organization (WHO), international immunization efforts are effectively reducing the incidence of rubella globally.

Linda Long from Scotland announced good news about the success of the MMR immunization program. A vaccine against measles, mumps and rubella was introduced into the childhood immunization program in 1998. Ninety-two percent of children in Scotland have received one dose of MMR by age 2, 95.6% by age 5. The positive outcome of high MMR uptake amongst children in Scotland is evidenced by the low incidence of rubella seen in Scottish communities and the fact that there has not been a baby born with congenital rubella (CRS) in Scotland in the 21st century. We are grateful to the many health professionals who continue to provide good information to families and support them to understand the potential consequences of infectious disease outbreaks amongst children.

However, Joff McGill of Sense, UK, reported that immunization rates in the UK have been severely affected by the MMR/autism debate, despite the fact that there has been no credible evidence linking the vaccine to autism. The cumulative effect of this decline in immunization is that an estimated 3 million children in the UK have not been vaccinated for MMR! Sense supports MMR vaccination as the safest way to protect children. For more info on this issue, visit the Sense website www.sense.org.uk

Health Factors: Susannah Barnett of Sense UK reported on a study she is conducting which will focus on the health of people with CRS. The results of this study may help us to better understand the influence of a genetic predisposition to health concerns (such as diabetes) as opposed to those who develop illness or disease from CRS only.

Health Related Quality of Life of Mothers of Adults with CRS: Normadeane Armstrong reported on the results of her doctoral dissertation on this topic. It was the first time that mothers’ health was studied in relation to caretaking for this population. It confirmed what moms already knew – that caring for a child with multiple needs can have a major impact on the mother’s health. Hopefully, this study will lead to more research on the health of parents and caretakers and better supports for all.

Jude Nicholas and Evabritt Andreassen of Denmark are looking into many great questions:

Do individuals with CRS have a high risk of developing dementia, especially those with intellectual disabilities?

How do we know if cognitive decline is related to CRS or to deaf-blindness in general? Many tests that are used to test dementia in the sighted hearing population are not normed to those who are deaf-blind.

What do we know about structural changes in the brain? We need to do individual studies or assessment to find out what’s going on, possibly using siblings for comparison.

For people with CRS, rubella is an infectious disease and the infection affected each person differently. How will assessments determine the amount of cognitive decline related to CRS? MRI can determine if there is an actual physical structural change in the brain, but this does not necessarily mean that it will have a direct effect on behavior or health.

What is the effect of mental health issues, i.e. depression, on one’s cognitive functioning?

And finally, have we sufficiently studied the impact of excellent communication on the health status of those who are congenitally deaf-blind and aging? Stay tuned as we learn more about the results of these studies.

Nancy O’Donnell and the Helen Keller National Center (HKNC) continue to work with the Centers for Disease Control to collect blood samples for the biomarker study. They are trying to determine if there is a unique biomarker in the blood of adults with CRS and, if so, can that be used to develop a blood test to diagnose CRS in adults whose diagnosis is unknown? HKNC also continues to collect and analyze data on their 2004 survey. Results will be posted at www. hknc.org




European Deafblind Network (EDbN)

Ricard Lopez reports

During this year the EDbN has taken part in two great events, the Assembly of the European Forum of Disability (EDF) and the 7th European Conference of DbI in Senigallia (Italy).

The Assembly of the EDF took place in Athens. The most significant was the fight for the position of President between Yannis Vardakastanis, who is present holder, and Jean-Luc Simón. Yannis was re-elected.

The participation of the EDbN in Senigallia was managed by Lucy Drescher, Ursula Heinemann and Ricard López. It consisted of a session of information and discussion about:

1. Who we are, our goals etc and how we can all lobby/campaign/advocate together at a European level;

2. The status of recognition of deafblindness;

3. Work in Brussels and the progress of the proposed Equal Treatment Directive, to apply to disability, age, sexual orientation and religious believe. The aim was to make these areas equal to gender and race, as there are already directives aimed at tackling discrimination on these grounds.

4. UN Convention on the Rights of Disabled People (CRPD). Riku Virtanen spoke eloquently about his reflections on this subject.

5. The work of the DbI Advocacy Group – an update

6. Listen 2 Me 5 in Olomouc in the Czech Republic, 2010. The committee of the hosting Czech organization showed us the latest information about this family event.

The Session was very dynamic and had numerous interventions from the participants. Sergei Sorokin and Grzegorz Kozowski were excellent contributors.


Recent News

Very recent news, at European level, was headlined “Historical EU decision to ratify the first international human rights treaty”. On 26 November, the 27 Heads of States and Governments gathered at the European Council adopted a decision for the European Community to accede to the United Nations Convention on the Rights of Persons with Disabilities. This is the first time in the European Union history that the Community is going to accede to an international human rights treaty and a great signal to all EU Members States.

Finally, we announce the next edition of the electronic bulletin “Deafblind Europe” for which we ask collaborations and suggestions. We hope contributions from deafblind people, families, professionals, volunteers, etc.
Ricard Lopez, EDbN

rlopez@sordoceguera.com




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