vrijdag 11 mei 2007

ADHD-Europe statement on exclusion

text of a presentation given on the launch of the ADHD Europe nework
by Rita Bolleart of centrum ZitStil Belgium
Bad Boll 18/02/2006


A person affected with ADHD – we all admit - is an outlaw, not in the meaning of fugitive from the law, a criminal or a rebel but as being a person excluded from normal legal protection and rights. We all are confronted with the reality of each European country that people with ADHD don’t get their human rights in an easy way. They all have to deal with stigmatisation, almost daily. They are struggling with a health care system that is not sufficient enough to live a normal live. They find no help, or the support is too expensive, the waiting lists can be more than 18 months, the integration of the existing support is fragmented in different levels without a possibility to have the necessary communications. Let’s not forget the discrimination, starting at school, but being a very big challenge when looking for a job.

For all these problems the need for a European initiative was clear. That is why the opening meeting of ADHD-Europe was held in Brussels, September 2005. There is still a big distance between all the goals and realizing them and it is a huge challenge as every one of the participating countries still has a very large to do list in his own country. Spending time and energy at the international level is not evident. But … no way to stop us any more!

This ADHD European Network wants to be an independent entity. In order to apply for funds from the EU and to influence European policy makers, the entity has to be European based and the work field has to be within the boundaries of the EU.

Other characteristics have also been defined at the opening meeting: ADHD-Europe is built up by a professional and a transparent approach. The support is delivered from by national advocacy groups which do not only work on the disease, but also on a wide scale of interest, representing patients and parents. Every point of view will be published by a united voice. The evidence based information on ADHD is the very first beginning of all the work we will do.

The goal of ADHD-Europe is to empower people affected by ADHD and to help them to realise the full potential of their lives. Secundo ADHD-Europe provides a strong and consensual input to raise awareness of ADHD as a European issue and will advocate for appropriate policies and legislation at the European level about ADHD

These goals will be achieved by the following objectives: “triple I” which stands for information, influence and improve.
Although ADHD is a topic with thousands of publications each year, there is still a lot of work to do on the information level. It is a challenge to disseminate the correct information, to be informed on the latest results in the scientific research. Another very important issue is sharing of good practices: how to deal with family doctors is an example, how to reach undiagnosed delinquents in the prisons, what about sexuality and ADHD, how offer the right education to adolescents … an endless list.
The information has to go ‘abroad’: not reaching only the immediate surroundings of people with ADHD (as know the parents, siblings, partners, friends and family, and involved school and health care professionals) but also the public opinion, the media, the employers …

Influencing is another responsibility but as important as sharing information. Just knowing how ADHD can exist, is not enough. The recent knowledge on diagnosis and treatment must be consolidated in appropriate health care.
Therefore the decision makers need to be convinced on the complexity of ADHD, on the need of influencing the prognoses of these children, adolescents and adults, as soon as possible. Not only the decision makers will be approached, also opinion leaders and the health care professionals themselves need a constant input of the latest views on the obvious needs of people with ADHD.

In the mean time we work on the improvement of all the things these persons need: diagnosis, counselling, treatment, reimbursement, coaching (including education and employment), equal access to support, etc.

This workload is almost too big to realize, but as we know ADHD very well, we will follow the same track, which means working and changing things step by step.

Two steps will be made already in 2006: ADHD-Europe contributes to the European Commission’s Green Paper on Mental Health, putting ADHD on the agenda. And by the financial and practical input of centrum ZitStil Belgium two websites will be created: http://www.ADHD-Europe.com and http://www.ADHD.eu (nb these links are not active yet- Stephanie)

Next to that, we follow up some proposed activities as the participation on the world mental health day (10 October) and the participation on the ADHD Belgium day (2 September). Also the ADHD awareness day in the US (14 September) could be an opportunity.

Rita Bollaert
centrum ZitStil Belgium
Bad Boll 18/02/2006

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