Prague 2.5.2004
Uma Aaltonen
Member of the European Parliament
EMSP Conference on MS and Employment
Dear friends and colleagues,
It is my great pleasure to sum up this stimulating meeting here in beautiful historically exciting Prague, and to share with you some of my thoughts about what could be our next steps for future even more equal treatment for us, people affected by MS. These days I have been proud to be one of us and as I mentioned the ice hockey world championships on Friday I want to do it again.
Have you noticed that the logo cheers our meeting?
MS 2004 stands for the games as well.
Naturally I am entitled to use my report on MS to start with.
The resolution adopted in the European Parliament on the rights of people affected by MS was definitely the highlight of my new career as a member to the Green Group where I got full support and encouragement to succeed. The seat in Petitions Committee, Louise's initiative to bring the MS-issue into daylight, assuring help from the committee all helped our cause.
On the very last day of the very last session of the European Year of People with Disabilities in Strasbourg last December we felt we stepped over a threshold.
I briefly remind you of some of the areas that the resolution covered:
• The need for a comprehensive code of good practices for equal treatment, therapies and services at EU –level.
• Research opportunities at EU-level
• Employment
• Accessibility issues
• The need to involve and empower people with MS themselves
• It is self-evident that institutions should engage each other to cope with MS, EU and WHO should share more MS research initiatives
Regarding our conference topic –employment, the resolution is promising and demanding.
• It recalls the concept of the “reasonable accommodation” of disabled people's needs.
• Calls on the Commission in coordination with the Member states to devise and implement framework legislation which privileges job-retention for persons with MS, many of whom are currently coerced into giving up work against their will, even though studies have shown the positive mental effects of continued work that can reduce the progression of the disease.
• Recommends enhanced measures be taken to promote the employment of the disabled people,
• Measures must be taken to raise awareness among employers and co-workers about the reality of disabilities and conditions such as MS, and their impact.
• Measures must be taken to respect the individual nature of conditions like MS
• All the measures taken must be evaluated so that the exchange of ideas and experiences, particularly at EU level, should spread successful models for the benefit of all of us.
That is exactly what we are doing here, and very successfully I dare to say.
I hope this resolution will serve as a tool for you all working with MS. It has now in paper a good number of the elements that we thrive to see in practise. I hope you - MS societies make these changes happen, and I hope this resolution will help you on your work. I was very glad to hear the Estonian MS/advocates have already used it strategically and wisely to convince their minister of Health to proceed towards our common goals in the EU.
We can say there are four key pillars in our work on the employment issue;
• The legislation.
• Programmes and initiatives
• Co-operation and alliance/building
• Public awareness
And as a Member of the European parliament, working with the law –making I'll start with the legislation.
The Equal treatment in Employment Directive is being implemented into national legislation, and we need to keep on demanding a full reporting, evaluation, and monitoring process. After that we see to it and that the Commission will take infringement measures if the Member states fail in the implementation. Employment and social affairs Commissioner Anna Diamantopoulou promised at the end of the year that there will be a Specific Disability Rights Directive, and we need to make sure that MS and other chronic diseases are taken on board and that the employment of people with MS, and the very characteristics of our disease are considered when creating a more solid legal ground for the employment of people with disabilities.
About the programmes and initiatives. I am certain that you are already familiar with the different programmes and funds that MS-societies can benefit from, financially and otherwise. I also want to remind you that there is The European Employment Strategy and European Social Inclusion Strategy that require governments to submit annual or bi-annual national action plans. It would be good to remember that there is a good chance for you / all national MS societies to make sure that a specific MS perspective is included in such plans that are then monitored by the European Commission.
Don\t be afraid of the EU Institutions, Louise wrote a letter to the president of the Parliament - not the Queen of England!
And what comes to co-operation; that is what we are doing here this weekend; changing best practices and learning from each other. But there are also other organisations that could help MS-societies in their work. These may include national councils of disabled people, other civil society organisations at national level; for example employers and trade union organisations.
And last and most importantly, when it comes to awareness raising, we simply need to make people know and understand MS and that way create a more positive climate for people affected by MS to become and remain employed. I think no legislation can do that for us.
There are unemployed people with multiple academic degrees unable to get a job in all the member countries -old and new. So it is not the diagnosis alone that keeps you out of a good job.
I would like to thank you everyone in EMSP for the fruitful co-operation that we had over the last year. And I am happy and honoured that you invited me to this conference, and I hope that the report we worked with last fall will be use for you also in the future.
This has been my European Parliament year and I'm happy to say it was successful with MS, in spite of my own MS and thanks to Louise's MS.
We have a good reason to celebrate our successes, our cooperation and friendship here in Prague this historic weekend of an enlarged European Union.
Thank you everyone, and we shall continue our work.
Let us trust in our common denominator Fighting Spirit that in Finnish is just one word SISU.
My SISU has helped me a lot. I hope you all have Multiple Sisu to take home with you.
Thank you and have a safe journey home.