Report from Independent Living seminar in Stockholm 2009: Networks on Personal Assistance and Public Transport Access

Networks on Personal Assistance and Public Transport Access  with Independent Living Institute as hub 

During the weekend of November 14-15 2009, before the European Union's Equality Summit, the Independent Living Institute hosted an international seminar in Stockholm with participants representing Independent Living organisations from Finland, France, Iceland, Ireland, Norway, Slovenia and Sweden as well as the European Network on Independent Living, ENIL.

We discussed the need for starting a Europe-wide network on personal assistance. Participants analysed the issues facing personal assistance users across Europe today as well as the tools and resources at our disposal for meeting them. We agreed on goals, priorities and approaches for the new network. The meeting noted that no country today has legislation and legal practice in place that would enable people dependent on personal assistance to live like others. In our analysis, assistance users cannot feel secure in any country as long as big differences exist amongst countries. Also, individual assistance users  - even under the best of policies -  need access to information, training and support by peers in directing their assistants in order to reap the maximum benefits from personal assistance.

On the second day we looked at accessibility, another Independent Living core area. Also here we identified the need for a European network for expediting development through sharing good examples of strategy, policy, practice and technical solutions as well as sharing our limited resources among individuals and organisations working for access in the EU member states. We agreed to focus on accessible public transport to start with.

The meeting emphasised that the two networks will cooperate with and complement ENIL which has become a successful lobby instrument at the EU level in need of wider geographical representation, in particular, among grassroots organisations.

Below follows a summary of the seminar’s discussion.  

Planned activities and working methods

One of the first tasks will be to build a membership registry for each of the two networks by compiling names and contact details as well as areas of expertise of persons interested in taking part. We hope to reach stakeholders such as activists, service providers, government officials, politicians and researchers  -  people who are involved in these fields on a daily basis. The membership registry is open to network members and will allow them to find individuals and organisations with similar interests for joint projects, virtual meetings, study visits, training and other cooperation. No membership fees are contemplated.

We plan to issue two newsletters, one on personal assistance and the other on access in public transportation, with announcements, invitations to events and references to developments reported by other sources including national or local groups and organisations. Members are encouraged to bring such material to the network coordinators’ attention. The newsletters can be spread by ENIL’s present newsletter for the mutual benefit of ENIL and the new networks.

News items and documented examples, with commentaries, of both good and bad policy and approaches, research reports and other documents, legislation, court cases, manuals as well as discussions, suggestions, comments, questions and answers can be compiled in two databases, one on personal assistance and the other on access in public transportation. Database and newsletter are open to anyone free of charge and will be hosted on the respective network’s homepage. 

The networks will cooperate with other organisations and networks by sending them the newsletters and linking to their information. Since we might not have resources for translation, we will be limited to referring to English websites unless we are able to find occasional volunteers who can provide English summaries.

Organisational structure

Seminar participants saw advantages in using networks as organisational form for the proposed work due to their flat hierarchy, low maintenance costs, flexibility as well as their ability to respond quickly and to enable members to get involved on an equal basis.

The meeting suggested the Independent Living Institute (ILI) as coordinating hub of the networks. ILI will provide infrastructure in the form of administrative staff which sets up, updates and maintains the two websites including their databases and newsletters. Ideally, members can assist, on a voluntary basis, as correspondents by finding news, reports and other resources in their respective countries and sending brief references in English to the coordinators at ILI. 

The coordinators will assist network members in their inquiries but most information seekers will go directly to the membership registry and database.

With administrative support from the coordinators members can initiate new features and projects such as virtual meetings. As the networks expand and members see fit, informal steering committees can be considered.

Benefits for network members and the field

The networks will facilitate the task of individuals, organizations, service providers and companies of staying on top of developments and finding resource persons, facts and arguments, on-going projects and good examples. In this way we pool our limited resources, spread our expertise and speed up the rate of development in these fields.

For Centers for Independent Living and other organisations the membership base can be useful in quickly identifying potential partners for EU project applications where time is essential. Self-help groups can find peer support facilitators and invite them as trainers.  Documented successful projects can be identified and replicated elsewhere. The same goes for events, campaigns or media programs. Activists’ groups might start discussion forums and opinion polls to gather evidence from users elsewhere for or against competing service operators or technical solutions in the public procurement of, for example, subway cars.

At the industry level, for instance for transportation equipment manufacturers or service providers, the networks can facilitate monitoring the development in other countries with an eye on building alliances and entering markets.   

At the individual level, travelers with disabilities can contact network members regarding the accessibility of public transportation at their planned destination. Users of public transportation might benefit from being able to directly report malfunctioning vehicles to politicians in charge  – if their contact details are in the database.


Disabled people’s organisations are expected to watch public transportation developments or personal assistance policy and practice in their country and elsewhere in order to defend their constituency’s interests. Service providers and companies have similar interests in monitoring their field. Therefore the networks’ information is of value to these players.

For information          

Davy Gaeremynck

Adolf Ratzka