In This Issue
Spotlight: Hearing in the European Parliament...
Human rights in Stockholm...
Disability watchdog: Giovanni is losing his personal assistance...
Updated Version: The "JAG-model". Manual on personal assistance with self-determination...
Role model...Jonas Franksson from Stockholm (Sweden)...
DPAC: Letter warns Government that Scrapping ILF would 'wreck lives'...
Good news! Bulgaria ratified the UN Convention on Rights of Persons with Disabilities...
Human rights violations in the Czech Republic...
Disability watchdog: Update on current events in Hungary...
Regional conference on independent living held in Trieste (Italy)...
Freedom of Movement Campaign: Launch of the Freedom Guide...
Research: Collaboration request for INNOSERV Project...
Reminder:...European Commision. Public consultation with a view to a European Accessibility Act...
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Independent Living News! Editorial team
Jamie Bolling
Ines Bulic
Juan Benages
Kerstin Sellin

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    23rd February, 2012


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Living News!

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Editorial Team Update


In this issue of Independent Living News you can read about the ENIL hearing successfully carried out at the parliament in Brussels. 


Kenneth Johansson, MP and chairman of the Parliamentary Social Affairs Committee, came out and talked to the demonstrators.

We also report from Sweden where the assistance legislation is under pressure. A report was submitted to the government last week, which is hitting the assistance users with the greatest disabilities and erodes the freedom and integrity - two cornerstones of the Swedish assistance reform. When the report was presented members in STIL and JAG braved the winter chill and gathered into a manifestation outside the government building. One of the initiators of the demonstration was Jonas Franksson, the role model of this issue.



Gary Lee, Law and Policy Officer, CIL, Carmichael House, Dublin, Sinead McCabe, Michael McCabe, Chairperson, CIL, Carmichael House, Dublin.

On the 9th February 2012 ENIL and the European parliamentary group GUE/NGL (European United Left/Nordic Green Left) held a hearing in the European Parliament. The purpose of this hearing was to show from a number of perspectives how people with disabilities are being negatively affected by the EU current austerity policies. 

This is the first time that ENIL has held a hearing in the European Parliament. ENIL presented its 'Proposal for a European Parliament Resolution' on the effect of the cuts. The hearing was received positively in the European Parliament and three Members of the Parliament participated in the hearing, Kartika Liotard, MEP, Netherlands, Cecilia Wikstrom, MEP, Sweden and Paul Murphy, MEP, Ireland. The hearing was streamed live and there was up to two hundred people watching online throughout the hearing, with approximately eighty people in the Parliament itself.  



Morten Kjaerum, director of the EU Agency for Fundamental rights (FRA) Photo: Justine Balagadde


Last week Morten Kjaerum, director of the European Union Agency for Fundamental rights (FRA), came to Stockholm for two days to meet with ministers, officials and local NGOs working in the field of fundamental rights.

ENIL had the chance to meet with Morten twice during his visit. At first there was a meeting arranged in partnership with the Centre Against Racism. ENIL was represented through Erik Ljungberg, from the ENIL board, Johan Petersj�, a member of JAG and Kerstin Sellin, coordinator for ENIL activities in northern Europe.


Read more... 


Photo: Jessica Linder Jansson

Since 2006, 14 year old Giovanni has been in receipt of 70 hours of personal assistance per week and has chosen to have his personal assistance through the JAG cooperative. Just before Christmas the National Swedish Social Assurance Agency decided that he no longer qualifies for personal assistance. 


Giovanni depends on continuity because of his disability and he needs personal assistance to be able to manage his daily life.  With personal assistance, his daily life improved significantly, especially since Giovanni's personal assistants were educated in how to respond to his behaviour to minimize his self-harming when he is not feeling good.


The "JAG-model" - A description of how you can organize personal assistance with self-determination when you have multiple, severe disabilities and limited autonomy.


Download the document Pa-manual_ENG

Role model


Jonas Franksson from Stockholm (Sweden)



All photos � 2012 Pete Riches

Campaigners have handed the government a letter signed by hundreds of user-led organisations and disabled activists, in an effort to save the Independent Living Fund (ILF).


The letter, written by the campaign group Disabled People Against Cuts (DPAC), warns that scrapping ILF would "wreck disabled people's lives" and push them into residential institutions rather than allowing them to live independently in the community.




Bulgaria has finally ratified the UN Convention on Rights of Persons with Disabilities. After a long and hard battle for the human rights of many disabled people in Bulgaria, Parliament has taken this serious step and ratified the Convention. This historical moment for persons with disabilities in Bulgaria is the first step in finally recognising the rights of disabled people. NGO's in Bulgaria are now facing the long path ahead of enforcing the articles of the Convention as a real instrument for Independent Living and human rights. 


Letter about human rights violations in the Czech Republic in the so-called "Homes for the Elderly"



This letter is based on my personal experiences and findings in the so-called "Home for the Elderly" in Hermanuv Mestec, which is under the direction of the Prague Municipality.


People are placed in these "homes" without knowing what type of institution they are going to. There is no consideration of their age, health condition or their individual needs, which would allow them to continue living, wherever possible, a full life. The leadership of these Homes replaces this with paperwork, in the form of the so-called "individual plans for the clients". By being placed in the Home for the Elderly, the person - client is deprived of their human rights.


In the Home, whether in their own room or in the common areas, the mentally healthy client is often exposed to aggressive behaviour by other clients with mental health problems. Some of them are often under the influence of alcohol, even though they are prescribed various medications.


Any complaints about the services or the overall situation in the Home are dismissed by the leadership of the Home. Well founded criticism of the employees is seen as a personal attack...


"We would like to make you aware of current concerns that disabled people in Hungary are faced with. Recently the Hungarian Government changed the whole disability pension system, which will be a lot worse than the previous system especially for disabled people. The biggest changes are connected to the rights that arise from the pension system. According to the new system the 1st and 2nddisability groups will remain unchanged, but persons belonging to the 3rd group will be reviewed and according to the decision of the reviewing committee some of them will no longer receive the pension as they did according to the old system..."



Last 14th December 2011 in Trieste (Italy) was held a conference on IL, ENIL was represented there, here you have the report written by Danci Maraz from YHD:


"YHD (Elena Pecaric and Danci Maraz) attended this event as ENIL regional coordinator for Eastern Europe. The conference was mainly attended by PA users from the north east of Italy and was organised by Stefano Baldini from the organisation Lasfida. At the event was also a member of the evaluation commission for the region of Friuli Venezia Gulia, responsible for deciding how many hours of personal assistance an individual can have. Stefano Baldini on behalf of Lasfida and Elisabeta Gasparini from the region of Veneto presented their views on implementing personal assistance in everyday life..."


Freedom of Movement Campaign: Launch of the Freedom Guide


On the 29th of February the Freedom of Movement Campaign are launching the Freedom Guide, in the European Parliament in Brussels.

Freedom of movement between member states by European citizens is one of the cornerstones of the European Union. The Freedom of Movement Campaign seeks to remove the barriers that people with disabilities in Europe face so that we too can fully enjoy and benefit from free movement as European citizens.

The 'Freedom Guide' is one of the first outcomes of the Freedom of Movement Campaign. This publication combines information from people in the disability movement, experts from NGO's and academics in relation to how Europe should be accessible and the way in which to do this. As the European Commission is in the process of working on the Accessibility Act, this Freedom Guide is a great resource of information for the European Union to creative an effective Accessibility Act.

Read more... 

Collaboration request for INNOSERV project - report good examples of social innovation


February 1, 2012 marks the beginning of the Social platform on innovative social services or the INNOSERV Project  funded under the European Commission's Seventh framework programme.  The Project is a unique opportunity for the identification and acknowledgement of innovative services that generate postive outcomes from a service user perspective.  ENIL has found it important to make our voices heard in order for this project to succeed and make a real difference for Independent Living.  We hope you will cooperate with us in this endeavor.

The Project is an attempt to survey the potential for innovative services in the health, education and welfare sectors. This by relying on a combination of academic/policy input, civil society perspectives and empirical knowledge.



Objective of the consultation

The Commission is reflecting on the development of a European Accessibility Act containing measures to improve the accessibility of goods and services in the European market. This consultation is part of the preparatory data collection that will underpin the assessment of the impact of the measures.


Target group(s)

All citizens, including persons  with disabilities and older people, enterprises and organisations of public and private sector as well as civil society in EU Member States, EFTA/EEA and candidate countries.

Period of consultation
  • Opening date: 12 December 2011
  • Closing date: 29 February 2012
How to submit your contribution?

The consultation is published on the Commission consultation website "Your Voice in Europe". The consultation site is accessible and follows web accessibility standards.


Response to the consultation can be submitted online by clicking here.


The questionnaire is available in English.

The questionnaire is also available in document format and can be requested for reasons of accessibility.


Reference documents and other, related consultations

Public consultation with a view to a European Accessibility Act - background document [35 KB].


Contact details
  • Responsible unit: "Rights of persons with disabilities", Directorate-General Justice, European Commission
  • E-mail: [email protected]
  • Postal address: Directorate-General Justice, European Commission, rue Luxembourg 46 01/13, B-1049 Brussels, Belgium.
Results of consultation and next steps


A report summarising the main outcomes of the public consultation will be included among the documents accompanying the eventual European Accessibility Act.