European Background to the

Declaration of Rights for People with Autism

Thursday, May 9^th 1996 will be remembered by parents, professionals and friends of people with Autism as an historic occasion in the European Union for the attainment of rights by people with Autism.

 

On this special day the President of the European Parliament, Mr. Klaus Hansch, announced that a Written Declaration on the rights of people with Autism had been signed by 331 members and passed by the Parliament.  This Written Declaration requires all member states to recognise and implement the rights of people with Autism.

 

This declaration of rights will have far reaching consequences for the quality of life of children and adults with Autism across Europe.  Diagnostic services, individualised education, family support, housing, vocational training and life long care will now have to be addressed and appropriate services provided.

 

The Declaration states that the rights of people with Autism should be enhanced and enforced by appropriate legislation in each member state.  It is now the will of the European Parliament that our children and adults with Autism should have their very specific needs met.  The approval of the declaration brings to a conclusion seven years of debate, discussion, effort and lobbying.

 

The first humble draft of this historic document was proposed in 1989. Initially a draft document was prepared containing 14 points that sought to highlight the abuse and misuse of medication and aversive treatments in the guise of care and development.  At the Council of Administration meeting of Autism Europe there were many heated debates and discussions as to what should be included in or excluded from the Charter.

 

Paul Shattock and I were entrusted with the task of writing the Charter and the Schedules to the Charter.  In 1992 we presented it at the Congress of Autism Europe held in the Hague where all of the member countries ratified and approved its 19 points.

 

It was then decided that for the Charter to have any relevance and credibility it must have political approval.  During that year we attempted to have a resolution, sponsored by two M.E.P.’s from the U.K., adopted by the European Parliament.  It didn’t get widespread support and was eventually dropped.

 

Following on from this we explored and investigated how best to proceed.  We met with politicians and civil servants and taking their advice we looked at the European Parliament’s system of resolutions, urgencies, oral questions and debates. 

 

Each option was examined and considered and it was finally decided that the only way to achieve our aims was to have a specific declaration approved by the majority of the European Parliament.

 

Once this had been decided the next step was to convince the Parliament of the legitimacy and necessity of our Charter.  This involved many meetings with members of the Parliament including meetings of the All Party Disability Group and in particular it’s Chairperson Barbara Schmidbauer, M.E.P. form Germany and Vice Chairperson Mary Banotti, M.E.P. from Ireland.  We also met with M.E.P.’s representing the various groups within the Parliament knowing that our Declaration required all-party support to succeed.

 

At a Bureau meeting of Autism Europe held on the 17^th September, 1995, it was decided to move with a sense of urgency and purpose to have the Charter approved by May 1996, in time for the Autism Europe Congress in Barcelona.  A draft Declaration was sent to Barbara Schmidbauer and Mary Banotti for Discussion.  After a series of meetings and with the assistance of Diana Sutton, from the Secretariat of the All Party Disability Group, the Declaration was drafted and Mary Banotti agreed to be its sponsor.

 

The Declaration outlined in 200 words the situation in Europe for people with Autism and their need for protection.

 

I was invited to present the Charter at a Disability Intergroup Meeting in Strasburg on 18^th January, 1996.  This was followed by a comprehensive campaign of lobbying, contacting member countries, enlisting their support and providing them with the list of M.E.P.’s in their respective countries.

 

The Bureau of Autism Europe and its President, Gilbert Huyberechts, gave their full backing in sending letters to each M.E.P. seeking their support.  As the weeks progressed Mr. Peter Scott and Ms. Anne Sophie Parent monitored the number of signatures of approval and fed the information back to each country’s organiser.

 

Finally, when it looked as if our Declaration might fail 13 signatures short of the 314 required we received a two day extension.  Mary Banotti put these two extra days to very good use.  She was instrumental in persuading more of her colleagues that this Declaration was well worth signing.  Her own commitment insured that the Declaration was approved.  People with Autism, their families and carers owe her a debt of gratitude.

 

331 members of the European Parliament signed our Declaration.  From it’s humble origins, 14 simple points typed by Nuala Matthews in 1989 in her home in Dublin, it is now a significant document whose value will become more apparent as the years progress.  It will be used to secure more and better services for children and adults with Autism for many years to come.

 

The Declaration is approved but the work is not finished.  The wish of the Parliament is that the rights of people with Autism be enhanced and enshrined in legislation.  Our work will not finish until this happens.

 

Pat Matthews