EU can ratify UN disability convention

The European Union has removed the last barrier to formal EU ratification of the United Nations convention on the rights of persons with disabilities, according to Gerard Quinn (pictured), the director of the Centre for Disability Law and Policy at NUI Galway.

A code of practice was agreed on in Brussels on December 6th that will govern how the European Commission shares its responsibilities under the convention with the member states, he said.

“From a legal point of view,” Mr Quinn added, “there is nothing to stop the EU from lodging its instrument of ratification with the UN despite the fact that not all EU member states, including Ireland, have ratified.”

He added that the Belgian minister for social affairs had said he wanted to conclude the ratification of the UN convention during the current Belgian presidency of the EU.

Advancing the National Disability Strategy

Building on Comparative and an International Innovation – Conference in Galway December 10th 2010

The Centre for Disability, Law and Policy held an international conference on National Disability Strategies in Ireland on 10th of December in the Radisson hotel in Galway.  This conference coincides with the UN Human Rights day which was adopted on the 10th December 1948 by the UN General Assembly.  This is an important day to promote human rights for people with disabilities throughout Europe and the world such as the right to an education, freedom of expression, Independent Living etc.

This conference launches the recent findings of the Centre’s research project on National Disability Strategies and the critical success factors which enable strategies to make a difference for people with disabilities at grassroots level. The keynote speech was delivered by United Nations Special Rapporteur on Disability, Shuaib Chalklen who plays a leading role in monitoring progress in promoting the rights of people with disabilities around the world and pointing Governments in the right direction.


Other speakers who spoke on the day include: Anne Hawker, current President of Rehabilitation International and Advisor on disability to the New Zealand government; Molly Harrington, Office of the Disability Strategy for the Ministry of Housing and Social Development, British Columbia; Siobhán Barron, Director of Ireland’s National Disability Authority and Angela Kerins, Chairperson of the Equality Authority.


The aim of this conference was to highlight some of the key messages from the book written for Cambridge University Press on a global comparative study of National Disability Strategies, entitled “From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities – the use of National Disability Strategies” which is due to be published in 2011. This was written by Dr. Eilionoir Flynn, the researcher for this project.


All speakers presented an inspiring and informative presentation for this conference.  Some of the key points addressed include the following:


The UN Convention on the Rights for People with Disabilities was the key legislation emphasised by all speakers as it plays a significant role in shaping National Disability Strategies (NDS) throughout the world.

It is crucial that people with disabilities themselves are included in shaping the NDS as they are the best experts in the field.


Article 19 of the Convention was an important article that was discussed as it outlines that people with disabilities have the right to live independently.  Therefore, in developing an NDS it is salient that Independent Living is at the forefront of their aims and objectives.

For further information regarding this comparative study please follow the below link:

Please follow this link for documents regarding this conference: T

he Centre for Disability Law and Policy at NUI Galway has been awarded an EU Framework 7 grant worth €3.7 million to develop and lead a Pan-European doctoral research project over 4 years. The focus of the research will be to find practical ways of making the UN Convention on the Rights of Persons with Disabilities a reality in the daily lives of people with disabilities in the EU. The FP7 grant will enable the Centre to lead a network of six other leading disability policy research Centres across Europe (including the Netherlands, UK, Norway, Spain, and Iceland). Several leading disability research institutes in the world will also contribute to its work including the Harvard Project in Disability.

The project – called DREAM (Disability Rights Expanding Accessible Markets) – is premised on the idea that smart EU policy initiatives on disability are not just good for people with disabilities, but also help expand markets and increase overall levels of economic activity. Digital Europe, the main umbrella body for European software and hardware manufactures and services, acts as a key commercial partner.

All of the researchers will also have the opportunity to gain invaluable and funded work experience with leading European civil society groups such as Interights (London), Mental Disability Advocacy Centre (Budapest), the European Disability Forum (Brussels) and the European Group of Human Rights Commissions. This will help sharpen their analysis and lead to policy recommendations that are well grounded in experience.

The Centre, which is based in the School of Law at the College of Business, Public Policy and Law at NUI Galway, is part of the emerging Lifecourse Institute at the University which combines the research strengths of three NUI Galway Centres on ageing, children and families as well as disability.


Director of The Centre for Disability Law and Policy at NUI Galway, Professor Gerard Quinn says, “This places the Centre at the very forefront of research that points the way toward better European law and policy on disability. It will train a new breed of policy entrepreneur in the disability field. This is the vital bridge to creating better living conditions for the over 60 million Europeans with disabilities. We are honoured to have been chosen to lead on this project which has European level significance. The researchers will have unrivalled access to world authorities on disability from Australia to Harvard.”

NUI Galway President Dr James J. Browne says, “This is great news for the University and indeed for Ireland. It is a good example of university research that is both socially responsible and that also aims at increasing economic activity. I understand it is the single largest FP7 grant given to a research Centre at an Irish Law School. It augurs well for the new Lifecourse Institute at the University of which this Centre is a part”.


ENIL’s Newsletters review of the year for 2010

The European Network for Indepednent Living (ENIL) presents a newsletter every fortnight with information regarding events and uplifting stories on various issues and news happening throughout Europe.  Since January, the newsletters included a number of interesting profiles of people with disabilities about their lives and their work and contribution to the IL movement such as, Jamie Bolling (Executive Director of ENIL), Adam Kasa (President of the European Parliament Disability Intergroup), Helena Karnstrom from Stockholm.  What an inspiring and encouraging read.

ENIL had plenty of activities and events to report on during the year.  It is evident from the newsletters that the communication between ENIL and some of the other European organisations and individuals has been strong.  This is very important as it shows that people are determined to enhance the IL movement throughout Europe in spite of the many challenges we come across.


There has been a lot of events and stories covered throughout the year up to this point.  As this is the last newsletter of 2010, we decided to round off the year with an overview of the year just past.

Here is just a sample of some events and points highligthed in the newsletters during the year:

  • ENIL is working to ensure that we move away from the medical model to an approach of equal opportunities for all people with disabilities in every corner of Europe.
  • ENIL held four Strasbourg Freedom Drives during the last decade.  The Freedom Drive is held every two years.  There was one held last year 2009 which was a success.  The next one is due to be held September 2011.  Watch the next newsletter for more information regarding 2011.
  • 2010 is the European Year for Combating Poverty and Social Inclusion which was launched on 21st Junauary.  People with disabilities are among the most poorest people throughout Europe and the world.  ENIL is using this theme for advocacy for their working plan for this year.
  • International Holocaust Rememberance day takes place each year on 27th January each year.  This year is the 65th anniversary to remember the victims of many people who were killed in the gas chambers where many of these people were people with disabilities.  This was horrific as people were institutionalised.  ENIL is calling for a closure to all institutions as people with disabilities want to live independently and not be institutionalised.
  • World day for Social Justice is held on 30th February which was designated by the General Assembly on 26th November 2007.  ENIL emphasises that there is a need for education, employment and social inclusion to reduce poverty among people with disabilities. There is a need for the development of support and services that reduce dependence and contribute to the economic empowerment and full participation of people with disabilities in society. Also, personal assistance schemes are essential for support and in reducing social exclusion.
  • International Women’s Day on 8th March-ENIL recognize that women with disability do not have a voice. A woman is more likely to be abused than a man but when you are a woman with a disability the chances are even higher.
  • This year is the 20th anniversary of the American Disability Act (ADA).  This celebration took place in America on 26th July.
  • The ENIL General Assembly was held on 20th September in Strasbourg. 30 ENIL members attended this important event.
  • ENIL ran a number of campaigns during the year such as Free Our People Now!

For further information and more, please check out the back issues of the newsletters on the website under elibray. We are working on improving  our newsletters all the time. If any of you have any items and photographs that you would like to see in the newsletter please let us know. We all hope that you have a safe and Happy New Year and we look forward to hearing from you in January to continue our work at making it a better place for all people with disabilities throughout Europe! By Gina Mc Namara


10. december Mednarodni dan lovekovih pravic

SPOROČILO ZA JAVNOST – 10. december Mednarodni dan človekovih pravic

ENIL – Evropska mreža za neodvisno življenje poziva člane gibanja za neodvisno življenje in s tem celotno družbo, da naredi korak naprej pri obeleževanju 10. Decembra kot Mednarodnega dneva človekovih pravic. Ta dan je namenjen promociji človekovih pravic.


Aktivisti znotraj gibanja za neodvisno življenje smo tudi borci istega gibanja za spoštovanje človekovih pravic in delujemo proti diskriminaciji. Na glas si drznemo govoriti o zlorabah in kršitvah ter izključevanju hendikepiranih. Zato zagovarjamo pravico do zaščite žrtev, ki so jim bile kršene človekove pravice. Veliko je kršitev človekovih pravic hendikepiranih. Posamezniki so zaprti v institucijah in s tem izključeni iz družbe. Prav tako so hendikepirani izključeni iz družbe s tem ko se gradijo nedostopne stavbe, šole.

Poleg tega pa obstaja tudi izključenost na podlagi nedostopnih informacij in nedostopnega trga dela. Mehanizmi kategorizacije, sramotitve in krivde so posledica dejstva, da nas družba ne sprejema kot sebi enakih, poleg tega se od hendikepiranih pričakuje manj kot od ostalih članov družbe.


Jamie Bolling

Izvršna direktorica

ENIL (European Network on Independent Living) – Evropska mreža za neodvisno življenje




Germano Tossi; ENIL member shares his thoughts on Independent Living

Germano Tosi, Italian Independent Living activist and member of ENIL and ENIL Italia would like to share with us his experience during the General Assembly.

Regarding my first experience at the International level, I’m very proud to participate and know all the staff of people which have been working and fighting for a lot of years in all the countries for the acknowledgement of the P.A. right for all the people with disabilities.

Furthermore the meeting at the European Parliament must be another step in the same direction, involving all the available MEPS to a useful cooperation concerning the ENIL strategy goals. In fact I still keep in touch with N. Rinaldi, which I’ve personally met at the meeting on 22nd September and we should let him participate in our next activities. I could suggest planning an international conference concerning P.A., in Italy the next year, organized by ENIL Italia and ENIL and asking Mr. Rinaldi to promote the event. 2011 is also the ENIL Italia twentieth anniversary for its activities. Actually the situation in Italy about P.A. means working in every regional contest to maintain and preserve the active programmes: this is the minimum target desirable, due to the financial crisis. We notice a very important fact: in the region of Molise the first law specified for P.A. has been approved! This is very successful point of start and now all the associations, as well as ENIL It, must continue this tough work to spread this good practice in every region. I’m looking for your kind ideas to start cooperation with all members of the Nominating Committee joined in Strasbourg, too. Please correct my surname. Have a nice time and cheers to everybody.

Germano Tosi


Germano Tosi has also provided us with several important reports which you can read by clicking in the links below

·Situation of Personal Assistance in Italy by ENIL Italia

·22nd of September MEP meeting in Starsbourg

Consequor a non profit Association for Independent Living


Conference in Stockholm

Conference in Stockholm about violence against women with disabilities was held on the 25th of November 2010.


“Bräcke diakoni” and the development centre on double vulnerability “Utvecklings centrum dubbelt utsatt” organized the conference about violence against women with disabilities. The 70 participants of the conference were from different organisations from the society yet all working with disability issues.

The day started with a film. The purpose of the film was to show how violence becomes something that is accepted as normal. The story was about a woman with intellectual impairment who was subjected to violence from her husband.

Denise Cresso, from the development centre on double vulnerability, held a lecture on violence against women with disabilities. She spoke about the similarities and differences between the violence of women with and without disabilities. One similarity is the process of normalization of the violence. Some differences for example are: The perpetrator hits where it hurts and the dependency on others.


Denise also mentioned the lack of access to women’s refuge in Sweden. In the Gothenburg region 4 of the 24 women’s refuges are accessible for disable women which is good in comparison to other cities in Sweden.

Emphasized by the conference is that it is important that every woman’s situation is seen as unique and that the support given is out of respect for the uniqueness of each situation. Something recurrent during the day was the words we use when discussing the issue and the influence of this vocabulary – how words affect us and our views of each other.Some synonyms were uses for awareness of the rhetoric influence these being synonyms for  “man” being strong and for woman being weak in the Swedish context.

New pictograms were shown. Words like beaten, grope and compelling are new.With these new words people who couldn’t express themselves on the violence they had experience – now could.

Sari NykvistStil



Protect People with Disabilities- An Irish Freedom Drive

On the 19th of January 2011 CILs from across Ireland and their members are urged to come together and meet with their political representatives.

We must demonstrate to our political representatives the need to Protect People with Disabilities:

  • Protect our incomes
  • Protect our access to essential services.

Representatives will meet at 11am in the Westbury Hotel Dublin.

We urge you to make your CIL’s voice heard and show Ireland that the days of people with disabilities taking what they can get and being grateful are over!

Remember there is Nothing About Us Without Us! If you are interested in taking part in this discussion please contact Sinead Dunphy at or 018730455 immediately.

Check out the website for more detail as to what is happening regarding IL in Ireland:


Christmas celebrations around Europe

Christmas is an annual celebration each year of the birth of Jesus Christ.  Therefore, most countries around Europe have their own ways to mark and celebrate the festivities.  We as people with disabilities also look forward to these festivities as it is a time to spend with family, friends and neighbours.

In the lead up to christmas, people with disabilities attend many pre christmas dinners and celebrations organised in various organisations.

Now we will look at how christmas is celebrated throughout Europe.



On December 6th Sinterklaas or Saint-Nicholas is celebrated, which is an entirely different holiday from Christmas. Santa Claus in Belgium is called de Kerstman or le Père Noël and he arrives on Christmas day to bring children presents. There are different cultures in Belgium, the Northern part being Vlaanderen (speaking a Dutch dialect), the Southern part being Wallonie (speaking a French dialect) and the Eastern part speaking German.Small family presents are given at Christmas which are placed under the tree, or in stockings near the fire-place, to be found in the morning. Christmas breakfast is a special sweet bread called ‘cougnou’ or ‘cougnolle’ – the shape is supposed to be like baby Jesus. Some families will have another big meal on Christmas day.


In France, another name for Christmas is Noel. Everyone has a Christmas tree, sometimes decorated in the old way with red ribbons and real white wax candles. Fir trees in the garden are often decorated too, with lights on all night.  This is a common sight we see in most European countries.

In France Christmas dinner is an important aspect in many households during Christmas with good meat and wine for the meal.  However, sending Christmas cards is not always done as it would be a common part of Christmas in Ireland.


Germans love to decorate their houses at Christmas. Many houses will have little wooden frames holding electric candles in their windows, and coloured pictures of paper or plastic which look beautiful from the outside at night. Often too, they will have an ‘Adventskranz’ – a wreath of leaves with four candles. (Advent – meaning ‘coming’ – is the 4 week period before Christmas). On each Sunday of Advent, another candle is lit. Most homes will also have little wooden ‘cribs’ – a small model of the stable where Jesus was born, with Mary, Joseph, Baby Jesus, and animals.

Father Christmas – ‘Der Weihnachtsmann’ – brings presents in the late afternoon of Christmas Eve (December 24th), after people have been to a church meeting. The presents are then found under the Christmas tree. One person in the family will ring a bell and call everyone to come to the room. On Christmas Day, fish (carp) or goose will be cooked.


People adhere to the tradition that Father Christmas brings presents to children on Christmas Eve. The presents are left under the Christmas tree or in shoes by the fireplace. A special Christmas meal of salted dry cod-fish with boiled potatoes is eaten at midnight on Christmas Eve.


Christmas Eve is the most important day during Christmas in Sweden whereby a special Christmas meal is eaten on Christmas Eve – ham (pork), herring fish, and brown beans – and this is the time when families give presents to each other. Many people attend a church meeting early on Christmas Day.

As we can see from some of the above celebrations, Christmas throughout Europe is a celebration time, which includes spending time with the family, decorating the entire house, inside and out and shopping, for friends and relatives. Spending Christmas with the family is very important for European people. On this day, all family members spend time in baking cookies, making fudge and preparing a big Christmas dinner, with all the trimmings. The children love to see each other and spend the day playing games and sharing their new gifts and toys that Santa Claus brought for each of them. Though the underlying zest of celebration is same, some of the distinct tradition can be seen that varies with different European countries.

All of us in ENIL would like to wish everyone a save and happy Christmas and New Year to all.

For further information on how your country celebrates Christmas please follow the below link.


Travel Rights for people with Disabilities

People with disabilities have an equal right to travel anywhere throughout the world as independently as possible with the necessary assistance that may be required.  For many years, freedom of movement has been an illusion for people with disabilities to the extent that accessing public transport was impossible such as trains, buses, air travel etc.  Due to this, many organisations and groups have spoken up to ensure that we can move throughout Europe and the world freely.

The European Disability Forum (EDF) has campaigned on this issue to a great extent in the last few years and months.  In the lead up to christmas there are more people travelling to go home or visit friends.  This is a perfect time to outline our travel rights so that we all know where we stand any time we go travelling.

The EDF has adopted regulations on the righs of people with disabilities when travelling by air on 5th July 2006.  This involved an intensive campaign for several years by EDF and many Disability Activists whcih now results in the enhancement of the European Disability Movement.

These regulation are the first disability specific legislation adopted by the European Union ever.  The requirements will hopefully lead to an end of the discrimination of air passengers with disabilities. The overall principle and the aime of these regulations is to ensure equal treatment for all passengers with disabilities whether you have a sensory, physical, intellectual or mental health difficulties. These include the following: Boarding An airline shall not refuse, on the ground of reduced mobility or disability, to accept the reservation of a person or to embark a person, except for:

  • Safety reasons established by national, Community or International law (which should be publicly available in accessible formats)
  • if the size of the aircraft or its doors makes the embarkation or carriage of a disabled person physically impossible

If boarding is denied, the disabled passenger has the right to be informed about the reasons thereof, and to receive re-imbursement or re-routing.AssistanceA disabled passenger has the right to receive assistance, which must be adapted to his/her specific needs. 48 hours before departure prior notification is nevertheless required. If the passenger does not notify his or her needs, the airline shall however do all efforts to assist the person anyway in order to allow the person for traveling. The assistance, to be supplied by a person who has undergone through disability awareness and disability equality training, will:

  • be provided from the point of arrival at the airport (with the transport mean chosen by the disabled passenger) or, if the passenger prefers, from the check-in desk, to the point of departure of the airport of arrival;
  • be provided at no additional charge
  • be seamless

For furhter information on these regulations please follow this link:


Susanne Berg on Accessibility

Early this summer the Swedish government presented a proposal on legislation prohibiting discrimination on the grounds of lacking accessibility. For the Swedish disability movement it was a long awaited proposal. Two years ago the Discrimination Act was enacted without access issues being covered. Instead, yet another inquiry was appointed, this time within the office of the Ministry of Integration, making its result a non-public document. We all knew it was ready and spent springtime waiting, holding our breath until the white paper finally was made public and circulated for comments.

The government’s white paper contains a proposed legal reform where discrimination on account of lacking accessibility is prohibited. Its main article defines discrimination on the ground of lacking accessibility as someone being disadvantaged through neglect to make reasonable accommodations. The aim of these accommodations is to put persons with impairments in a comparable situation with persons without such impairments. Points to consider when deciding what accommodations shall be deemed reasonable is presented in a proposed separate article. These are: if the accommodation needs to be made due to other regulation; the usability for persons with impairments especially; the enterprise’s possibility to carry the costs of accommodations; the possibility for the individual responsible to anticipate the need for accommodations; the effect of the accommodations on the content, function and organization of the enterprise; the effect of the accommodations on health, safety and culturally valued environment.


The joint comments from STIL, founders of Independent Living in Sweden, Independent Living Institute and the March for Accessibility are based on the Independent Living principles of self-determination, self respect and empowerment and the demand on society to acknowledge the capacity of disabled people and our right to a citizenship based on equal opportunities. Our comments, therefore, prioritize mainstreaming, universal design and voluntary compliance.

One issue of importance for us was that the access solution had to be as mainstreaming and universally designed as possible. While, the Norwegians have enacted a clear demand for universal design in the shape of access to the main function in their recently enacted anti-discrimination and accessibility law, no such reform was proposed in the Swedish white paper. Instead, the proposed article defined the aim as resulting in positioning persons with impairments in a comparable situation to persons without such impairments. In essence, this means that when several alternative access solutions exist, the enterprise (i.e. the responsible person in the enterprise) is free to choose alternative. The individual person, subjected to discrimination, have no say in this. As far as we could deduct the situation which should be comparable was the end result, the activity itself, to a large part leaving out the issue of how access to this should be designed.

Sure the white paper stated that solutions should be done in a non-stigmatizing manner and as far as possible according to principles of universal design. However, this was proposed to be part of the assessment of whether or not the accommodations required were reasonable and not actually part of the main article. The assessment was proposed to be done by the enterprise according to what usability accommodations had for the person with impairment. While, we were not opposed to having the reasonableness of alternative solutions tested according to whether the enterprise could carry the costs for them, we certainly did not want them to be assessed under usability for persons with impairments especially. And we wanted to incorporate a demand for solutions after universal design in the main article. Frankly, we dreaded an avalanche of the special and wanted to try to guarantee that the concept of access to the main function had at least a small foothold in Sweden.

Our demand is, therefore, that the main article will include a phrase stating that measures of accommodation to create accessibility shall, if this is not impossible or unreasonable, be made according to universal design. We also demanded that the reasonableness of these measures (i.e. solutions) should be assessed under point three: the enterprise possibility to carry the costs of accommodations.

The odds, on whether the Swedish government will consider these and other demands we have made, are uncertain. The same applies to whether the Swedish Parliament will enact any of the proposals of the white paper. Concurrent with the period of circulation for comments, a government authority has been assigned the task to do a cost benefit analysis. The conservatives (Moderaterna), the main party together with the Christian – democrats (Kristdemokraterna) are the driving forces behind the cost benefit analysis within the center-right coalition in government. And the social democrats (Socialdemokraterna), the main party within the left-green block is in agreement with this.

We can wonder how the future discussion will go: “Oh, it doesn’t look like it’s going to cost a lot. It must be discrimination”, or “Ah, we think this is going to be costly. It can never be discrimination”. Hopefully, we will know the result in 2011.

Susanne Berg


Good experiences of parents as personal assistants to their children


Personal assistance is a very successful service for children and young people as well as adults. With personal assistance all children can grow up together with their parents and siblings. They can play, go to school and have experiences on their own terms.

assistance gives fantastic opportunity, but it is not always simple to make it work within the family and everyday life. You need to find assistants that go well ahead together with both the child with disabilities and the rest of the family. The assistants need appropriate introduction and education in the profession. The parents need support from other in the same situation to cope with their various roles and training to make the rights demands on the assistants. There is a need for close supervision of a person with an explicit and clear mandate. And last but not least, the family need moments without any outside observer in the home, just to breath.


In Sweden 3 500 children and young persons under 19 years of age have personal assistance through state funding. It is very common that also the parents work as assistants, especially when the child is younger.

Persons without experience in personal assistance sometimes express concerns to hiring relatives as personal assistants because they think it complicates the process of liberation. But no other has so many people around all the time as a child with major disabilities. Assistants, special teachers, resources, leisure and short-term staff, specialists, yes the list goes on. A week consists of 168 hours. If the parents assist their child 40 hours per week to make sure that the family has some private life left and for the child to avoid having “staff” around all the time, there is still a lot of time for the child to get valuable contacts with other persons.

With 18 years experience of organizing personal assistance the JAG association dares to say that the opportunity to choose parents and relatives as assistants is fundamental. When you have intellectual disabilities or considerable communication disabilities there is a great advance to use your existing network and get assistance from persons who know you well and can interpret your needs and wishes.

In the study “10 years with personal assistance” we also show that the assistance reform in Sweden has led to fewer adults remaining in the parental home. Before the assistance reform barely 20 percent of the interviewees over the age of 18 were living in own homes. After the assistance reform this figure had tripled. Close to 60 percent of the interviewees over 18 with personal assistance live in their own homes, and they have a real chance to decide for themselves whether they want support and service from their relatives or not.

In 1995 over 60 percent of the interviewees in the study had at least one relative employed. Ten years later the trend has reversed. A growing number of parents have reduced the time they work as personal assistants or have stopped working altogether, even though the child’s granted hours of assistance increased during the period. That the parents are working less as assistants fits in with the increasing familiarity with the form of support as such. People dare to recruit “outside” assistants.

Another concern is that parents who are employed as their child’s personal assistant can become financially dependent on the child. But it should not be forgotten in this context that in many cases the parents had previously given the same support without financial compensation. This created a dependency on allowances, while at the same time individuals had limited possibilities of getting equivalent support in other ways. Given that parents can now be employed on the same terms as other assistants, they are replaceable.

Of course parents and other relatives who are working as personal assistants need the same rights and obligations as other assistants and should follow labor laws and regulations. The assistance need to be organized so that there are no expectation of substantial unpaid efforts of care or service to the child from the parent or constant need of jumping in as a substitute which make it impossible for the parent to maintain another job.

In conclusion, the quality of the support given to the families (which also include foster or adoptive families) is important. In the JAG user co-operative the parents can choose to supervise the assistants to the child, or nominate someone else for this mission. JAG offers the service guarantor extensive support and training in his or her role as a supervisor. The support from the co-operative also includes counseling, recruitment support, legal advice and training for the assistants.

In 1994 personal assistance became a legal right in Sweden for people with certain impairments, both children and adults. A new law, LSS, gave individual rights to people with notable and lasting disabilities and an extensive need for support and services. There shall be a need for support and service for basic needs, like personal hygiene, dressing, eating and communicating with others. The local community is responsible for the service, but there is state funding through the social insurance system when assistance is needed for more than 20 hours per week. Funding is given with a fixed sum per hour that shall cover all costs. The amount of hours is not limited. The system allows the person with disabilities to decide how the service is to be organized and designed with the help of the parents or a legal representative. The person can choose the local community as a service provider, a non-profit co-operative (like GIL, JAG and STIL) or a private company and is also free to choose the assistants.



The JAG Association in Norway is fighting for personal assistance and equal rights

The JAG Association in Norway started a year ago and has already 30 members. Only a person with multiple, severe disabilities including some kind of intellectual disability can become a member. Others can become supporting members, without power or influence in the association.

In Norway personal assistance was included in the Law on Social Services in 2000, as an alternative way of organize support to persons with disabilities. The municipality is obliged to offer personal assistance. Personal assistance is not limited to certain disabilities and includes both children and adults and persons with intellectual or cognitive disabilities. This is clearly stated in a circular from the government in 2005.


In spite of this regulation is it more difficult for a person with cognitive disability to get personal assistance in Norway. The JAG Association cannot accept this discriminatory treatment!

Persons with multiple, severe disabilities including some kind of intellectual disability should have equal right to personal assistance. Long experience from Sweden, as well as from Norway, shows that personal assistance is additional valuable for persons with intellectual disabilities because it is an individual support, gives freedom and quality of life.

Please, contact us if you would like to know more about JAG or what it is like to live with personal assistance in Norway!Ellen and Anne Frogner, e-mail: is chairman of the board and Anne is her legal representative)

The picture shows some of the members in JAG outside the Norwegian parliament, in connection with their first meeting with representatives for the ministry of Health and Care.


New Norwegian report shows that personal assistance is profitable from a socio-economical perspective

On behalf of ULOBA, the international consulting firm Econ Pöyry has prepared a report on citizen-/user controlled personal assistance in a socio-economical perspective. The study shows that personal assistance is economically viable and that personal assistance is the only instrument that provides opportunity for employment and social participation. In decisions on how many persons will be granted personal assistance and how many hours of assistance to be given, the socio-economic considerations play an important role. The fact that persons with personal assistance themselves are very satisfied with the arrangement has long been known, and confirmed in the report. The report presents additional information to indicate that personal assistance can have a significant effect on labor force participation among disabled people and especially their immediate family. It has measurable and significant positive socio-economic effects.

Improved quality of life

The basis for the analysis is a survey on adults with personal assistance and parents of children with personal assistance.

All of them agree that personal assistance is important to their life situation and also their immediate family. 95 percent said that personal assistance is of great importance for how well they have it in every-day.

The study shows that personal assistance for the most part works as intended: Unlike all other forms of service, personal assistance gives the opportunity for social participation, employment, family life, and an independent existence.

In many crucial areas, there are no alternative ways to cover the need for assistance. The person’s daily life would be greatly reduced, and the tasks would remain undone. Alternatively, they would have been carried out by family members, or services may have been bought.

Reduced activity without personal assistance

The study shows that without personal assistance, there would have been greatly reduced activity in many areas:

–The social life for example, would have been reduced by about 35%.

–Employment and education would have been reduced by approximately 70%.

–Activities related to parenting would shrink by about 60%.

–Miscellaneous errands would about 30% remained undone.

–Leisure activities would have been reduced by approximately 35%.

–Political or other organizational work would have been reduced by approximately 40%.

Personal assistance provides increased participation and saves money

Approximately one quarter of the interviewed persons report that they have an ordinary job. About half of these have full-time job. Two thirds of those in work, believes that without personal assistance, they would not have been at work. The rest believe that they would have worked less. Also, family members would have been less economically active if the family member with disabilities did not have personal assistance.

The survey shows that far fewer among the adult’s lives with their parents. The proportion living in their own home is raised from about 60 percent before they began using personal assistance to 80 percent now.

Those who have responded to the survey, says clearly that personal assistance causes less demand for different types of health “care”. Saving the cost of such services is an economic gain. The use of personal assistance also leads to less pressure on the traditional home services as personal assistants are not recruited from the health care professions.

You can find the original report in Norwegian here.


10 de Dezembro de 2010 – O Dia dos Direitos Humanos

A ENIL faz uma chamada de atenção para que o Movimento de Vida Independente e toda a sociedade dêem um passo em frente no dia 10 de Dezembro de 2010 – O Dia dos Direitos Humanos.

Dar um passo em frente neste dia para divulgar o reconhecimento que faz o Alto Comissariado das Nações Unidas para os Direitos Humanos (CNUDH) aos defensores dos direitos humanos que actuam para acabar com a discriminação.

Nós, activistas do Movimento de Vida Independente, somos
defensores dos direitos humanos e lutamos contra a discriminação das pessoas com deficiência. Denunciamos os abusos e violações, inclusivamente a exclusão, a opressão e a violência contra as pessoas com deficiência. Defendemos a justiça e procuramos proteger as vítimas de violações dos direitos humanos. As violações dos direitos humanos das pessoas com deficiência são muitas:


·As pessoas são fechadas em instituições que as excluem da sociedade.

·As pessoas são fechadas em casa, excluindo-as da sociedade.

·As pessoas são separadas da sociedade através da inacessibilidade de edifícios, informação, escolas e mercado de trabalho.

·Os mecanismos de categorização (que levam a estabelecer uma hierarquia na valorização das pessoas), a vergonha e a culpa dificultam que as pessoas nos vejam como seus iguais.

·As expectativas relativamente às pessoas com deficiência são menores do que as relativas à sociedade em geral.

Nós, membros do Movimento de Vida Independente, actuamos em todo o mundo, nas comunidades locais, nas políticas nacionais e internacionais. O Dia dos Direitos Humanos de 2010 irá realçar e promover os êxitos dos defensores dos direitos humanos. Desde o Movimento de Vida Independente sublinhamos o papel primordial que os Governos devem desempenhar para cumprir com a Convenção das Nações Unidas sobre os Direitos das Pessoas com Deficiência:

·Encerramento imediato das instituições

·Desenvolver programas de serviços comunitários controlados fundamentalmente pelos utilizadores

·Adoptar sistemas de pagamento directo para a assistência pessoal

·Acabar com os tratamentos involuntários para utilizadores psiquiátricos

·Garantir acessibilidade arquitectónica

·Abrir escolas

·Abrir o mercado de trabalho

Ratificar a Convenção das Nações Unidas sobre os Direitos das Pessoas com Deficiência JÁ!

Jamie Bolling

Director Executivo

ENIL – Rede Europeia para a Vida Independente



10. Dezember, dem Tag der Menschenrechte


ENIL ruft die Independent-Living-Bewegung und die gesamte Gesellschaft dazu auf, sich am 10. Dezember, dem Tag der Menschenrechte, zu melden.

Treten Sie am heutigen Tag vor und unterstützen Sie das Anliegen, das vom Büro des Hochkommissars der Vereinten Nationen für Menschenrechte verbreitet wird. Unterstützen Sie aktiv alle Verteidiger der Menschenrechte, die durch ihr Handeln gegen menschliche Diskriminierung vorgehen.

Wir Aktivisten in der Independent-Living-Bewegung verteidigen die Menschenrechte gegen alle Versuche der Diskriminierung von Menschen mit Behinderung. Wir sprechen uns gegen sämtliche Formen von Missbrauch und Gewalt aus, darunter Ausgrenzung, Unterdrückung und Gewalt gegen Menschen mit Behinderung.


·Es gibt eine Vielzahl von Verstößen gegen die Rechte von Menschen mit Behinderung.

·Menschen werden in Einrichtungen gesperrt und von der Teilhabe am gesellschaftlichen Leben ausgeschlossen.

·Menschen werden in Wohnungen eingesperrt und von der Teilhabe am gesellschaftlichen Leben ausgeschlossen.

·Menschen werden durch unzugängliche Gebäude, nicht zugängliche Informationen, durch unzugängliche Schulen und Arbeitsmärkte von der Gesellschaft ausgeschlossen.

·Starre Einordnungsmechanismen (oft wird der Wert eines Menschen wie in einer Hierarchie gemessen), Scham und Schuld führen dazu, dass viele Menschen uns nicht als gleichberechtigt anerkennen.

·Die Erwartungen an Menschen mit Behinderung sind niedriger als die an die Allgemeinheit.

Wir, als Mitglieder der Independent-Living-Bewegung, sind in jedem Teil der Welt aktiv – in den Gemeinden, in der Politik des Landes, in dem wir leben und auf internationaler Ebene. Der Internationale Tag der Menschenrechte 2010 wird hervorheben und verbreiten, was Fürsprecher der Menschenrechte schon erreicht haben. Wir von der Independent-Living-Bewegung betonen die Bedeutung des Eintretens unserer nationalen Regierungen für die Behindertenrechtskonvention der Vereinten Nationen. Wir fordern:

·Schließen Sie Behindertenheime, und zwar möglichst schnell.

·Sorgen Sie für ambulante Wohnalternativen in der Gemeinde, die von den Bewohnern selbst beaufsichtigt werden.

·Sorgen Sie für Möglichkeiten direkter Bezahlung für persönliche Assistenz.

·Stoppen Sie jede unfreiwillige Behandlung von Bewohnern und Überlebenden psychiatrischer Einrichtungen.

·Bauen Sie barrierefreie Gebäude und Umgebungen.

·Öffnen Sie die Schulen.

·Öffnen Sie den Arbeitsmarkt.

Unterzeichnen Sie die UN-Behindertenrechtskonvention JETZT!

Jamie Bolling

Executive Director

ENIL – European Network on Independent Living



10th of December; Human Rights Day

ENIL calls the Independent Living movement and all of society to step forward on December 10, 2010 – Human Rights Day.


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Step forward this day to spread the theme promoted by the United Nations Office of the High Commissioner of Human Rights (OHCHR) by acclaiming human rights defenders who act to end discrimination.

We activists within the Independent Living movement are human rights defenders acting against discrimination of disabled people. We speak out against abuse and violations including exclusion, oppression and violence of disabled people.  We advocate justice and seek to protect the victims of human rights violations.


·Violations of disabled people’s human rights are many

·People are locked up in institutions excluded from society.

·People are locked in homes excluded from society.

·People are locked out of society through inaccessible buildings, information, schools and employment markets.

·Mechanisms of categorization (seeing people’s worth in hierarchy), shame and guilt have people not seeing us as equals.

·Expectations are lower for disabled people than for the general society.

We, members of the Independent Living Movement are active in every part of the world, in local communities, in national politics and internationally. This Human Rights Day 2010 will highlight and promote the achievements of human rights defenders. We from the Independent Living movement emphasize the primary role Governments must play to fulfill the United Nations Convention on the Rights of Persons with Disabilities:

·Close institutions now

·Provide mainstream user controlled community living programs

·Adopt direct payments for personal assistance schemes

·Stop involuntary treatment of users and survivors of psychiatry

·Build accessible environments

·Open the schools

·Open the job market

Ratify the United Nations Convention on the Rights of People with Disabilities NOW!


Jamie Bolling

Executive Director

ENIL – European Network on Independent Living



Meet Peter Lambreghts, from Gent (Belgium)

Peter Lambreghts (Belgium)

Peter Lambreghts (Belgium)

Born in Antwerp, Belgium in 1971. Happily married and father of two princesses. Enjoyed a wide range of studies on bachelor level. Volunteer and active member of several associations of persons with a disability. Chairman or board member of several think tanks,organizations and associations in the protection of interests of people with a disability. Elected as ENIL board member on the GA 2010. Used to work for VGPH,the Flemish platform for people with a handicap and now as a staff worker for the Expertise Centre Independent Living in Gent. (more…)

3 de Diciembre; Día Internacional de las Personas con Discapacidad


ENIL celebra hoy, 3 de Diciembre de 2010, el día Internacional de las Personas con Diversidad Funcional

Representamos el 10% de la población mundial, o visto de otra forma 650 millones de personas. A menudo las sociedades en las que vivimos no son conscientes de las dificultades con las que tenemos que enfrentarnos.

Este día nos sirve para celebrar nuestra diversidad, para que se reconozca que las dificultades a las que nos enfrentamos son cuestión de derechos humanos y para reivindicar la dignidad que nos merecemos.

Luchamos por la inclusión de las personas con diversidad funcional.


Queremos democracias reales que permitan la participación plena de todos los ciudadanos.

Nosotros, las personas pertenecientes al movimiento de Vida Independiente queremos enfatizar que son los gobiernos de cada país quienes tienen el deber de implementar la Convención de las Personas con Discapacidad y por ello demandamos:

·El cierre de instituciones

·Acceso a programas de servicios comunitarios dirigidos por personas con diversidad funcional

· Asistencia Personal a través de Pago Directo

·Parar el tratamiento sin elección de decisión de las personas con diversidad funcional fuera y dentro de las instituciones psiquiátricas

·Entornos accesibles

·Sistemas educativos inclusivos

·Mercados laborales abiertos para todos

Exigimos la ratificación por parte de todos los países de la Convención de las Naciones Unidas de las Personas con Discapacidad, y exigimos que se ratifique AHORA!


Jamie Bolling

Directora Ejecutiva

ENIL – Red Europea de Vida Independiente



3rd of December: International Day of Persons with Disabilities

ENIL celebrates today, the 3rd of December 2010, International Day of Persons with Disabilities.


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We represent around 10% of the world’s population, or 650 million people. Often our societies are unaware of the challenges we face.

We use this day to celebrate our disabilities, to promote an understanding of our issues as human rights issues and to mobilize support for the dignity we deserve.

We strive for inclusion of persons with disabilities.

We demand true democracies that allow full participation of all citizens.


We from the Independent Living movement emphasize the primary role Governments must play to fulfill the United Nations Convention on the Rights of Persons with Disabilities:

·Close institutions now

·Provide mainstream user controlled community living programs

·Adopt direct payments for personal assistance schemes

·Stop involuntary treatment of users and survivors of psychiatry

·Build accessible environments

·Open the schools

·Open the job market

Ratify the United Nations Convention on the Rights of People with Disabilities NOW!

Jamie Bolling

Executive Director

ENIL – European Network on Independent Living