ENIL has launched a web questionnaire to ask what’s happening with the UN Convention in your country.

Do you think the Convention has made any difference? What do you think could strengthen the Convention? Have you seen any changes by your governments? Has your government asked an organisation with knowledge of independent living to help the monitoring process or a traditional medical based organisation? Have you seen any changes around article 19?

Help us to let governments know what we think about what they are doing (or not doing). There are just 13 main questions most of which are click through. Do you have 4 minutes? Go to:



MINISTER of State for Disability Issues John Moloney has said he will draw up plans which could give disabled people direct payments to pay for services rather than giving the money to institutions.

Speaking following the annual general meeting of Inclusion Ireland, the national association for people with intellectual disabilities, Mr Moloney said individualised payments were the way forward.

“As far as I’m concerned, this is the future. I want to drive this idea and as part of a policy review, I hope to bring proposals on this area to Cabinet before the end of the year,” he said. At present the State pays disability organisations and charities about €1.6 billion per year to provide day and residential services for people with disabilities. Mr Moloney was responding to calls from groups who say the move would give people with disabilities and their advocates far greater choice in the type of services they receive.

Séamus Green of the National Parents’ and Siblings’ Alliance said it would also ensure that services fit around the needs of people with disabilities, rather than the other way around.

“This is about giving people with disabilities the kinds of choices and the kind of life that we have; helping to integrate them into mainstream society, give them a chance of a better quality of life,” he said.

The conference also heard that a 60-bed residential development built to transfer people who are inappropriately housed in a psychiatric hospital has been lying empty for the past year.

Plans for a modern campus of six 10-bed units on the grounds of St Ita’s Psychiatric Hospital was originally announced almost 12 years ago. Gerry McDonald, whose son was due to be transferred to the new facility, said parents and their children were deeply frustrated over the slow progress in opening the facility.

“These residents are living in out-dated, over-crowded conditions. The dilapidated building they’re in was constructed as a lunatic asylum in the 1800s. It’s totally inappropriate for the needs of people with disabilities.”

Mr McDonald said parents had not received any firm commitment over when the unit will open.

St Joseph’s Association for the Intellectually Disabled has also been lobbying the Health Service Association to open the facility.

Mr Moloney said he was unable to give a commitment on extra staff for the unit.

Reference: http://www.irishtimes.com/newspaper/ireland/2010/0426/1224269093646.html

Centre of Independent Living, Dublin
The document below was presented to Minister John Moloney TD at a meeting beween the Center for Independent Living Dublin and the Minister in Dail Eireann on Thusday 29th April 2010. The Minister has agreed to meet wih CIL Dublin again in June  to hear the views of CIL on the necessary policy framework for the implementation of direct payments.



The Center for Independent Living calls on the Minister of State for Disability Issues, John Moloney TD, to introduce a Personal Assistance Act which will set out who qualifies for personal assistance, the purpose of such assistance inside and outside of the home, how such assistance is to be organised, and the right of people with disabilities to be part of their assessment for personal assistance. The Act would have regard to all models of service delivery including direct payments to people with disabilities for the purpose of employing, directly or indirectly, personal assistance, and provide the necessary policy context for the delivery of such services.

The Center for Independent Living welcomes the statement by the Minister that he intends to bring proposals to Cabinet, before the end of 2010, on direct payments to people with disabilities for the purpose of purchasing support services.

CIL calls on the Minister to enter into negotiations with the Center to hear directly the views of people with disabilities on this important issue. CIL have a unique experience of how direct payments can impact on the lived experience of people with disabilities when set within the correct policy framework. This experience arises from over twenty years of ongoing formal and informal contact with disabled colleagues within the European Union, some of whom have been instrumental in shaping legislation on personal assistance and direct payments in their own countries.

CIL believes that choice and control for people with disabilities over how their services are organised, delivered and commissioned, is a prerequisite to self determination. This social model of disability is endorsed by the United Nations Convention on the Rights of People with Disabilities which upholds the right to the personal assistance necessary to support living and inclusion in the community. Within this context of the social model of disability it is the view of CIL that any legislation or policy on personal assistance or direct payments should reside outside the jurisdiction of The Department of Health.

In order that direct payments succeed, in the context of employing personal assistance, CIL believe that concurrent policies on capacity building measures for individuals and User Led Organisations must also be implemented.

Irish Times photo, Volcanic Ash, Iceland

Ireland wasn’t a bad country to be stranded in, at least we had in the meanwhile the chance to witness the first 14 days of nonstop sunshine in their history.

The trip to Ireland was meant to last for exactly one week, from Friday, April 9th to Friday, April 16th, flying with SAS between Stockholm and Dublin. To save on logistics and expenses, only one of my three PA’s joined me.

The plan was to visit Dublin and pick up an adapted rental car on Monday, so that we could explore the northern half of the country. After driving via Belfast, Derry, and Sligo, we heard Thursday on the radio in Galway that airspace in many European countries had been closed due to an ash cloud after the vulcanic eruption on Iceland.

We drove back from Galway to Dublin during the night of Thursday to Friday and on arrival the receptionist suggested that we just as well could stay for more than one as all flights from Dublin had been canceled. Our flight to Stockholm was scheduled for 11:45 am and when we were at the airport around 9, we didn’t feel lonely. After queuing for about an hour we got the message that we were rescheduled for the flight on Monday, April 19th. We could also come to the airport on Sunday and see if there were any standby places left on that flight to Stockholm. There was no information available on help with alternatives, such as accommodation or compensation.

We called our car rental company and they extended our rental period to Monday, April 19th. During those days, we visited Cork, the south coast, Killarney, and Limerick. As we were rescheduled for Monday, we got back to Dublin airport and they booked us for the flight on Friday, 23rd. On asking for any help, they replied that no accommodation or compensation could be provided: “We did so the first two days, but not any more as the airlines would go bust.”

Our rental car got picked up at the hotel. and we started to feel locked in, in Dublin. We followed the news quite attentively and checked the status of airspace, airports and flights several times per day. We started thinking of other alternatives to get back home. The closed airspace above Britain had cut off Ireland from mainland Europe for any flight. Even David Egan from Dublin CIL gave us tips, but traveling from Dublin to Stockholm by ferry, train, Eurostar and train would take at least 3 days, and tickets for the Eurostar between London and Brussels were on Tuesday morning already sold out until Thursday evening. Taking the ferry between Dover and Calais, seemed a bit risky as there was a transport strike going on in France. As I was traveling with a personal assistant, I  was to pay the transportation costs for two persons. At the earliest, we could have arrived in Stockholm on Friday morning, with the use of alternative means. We saw and heard that test flights went well and that airlines were eager to start operating again.

Our guess was that the best alternative was to extend our hotel stay day by day and wait for the first flight with SAS to Stockholm. We were on that first direct SAS flight to Stockholm and we used our time in Dublin for visiting some more museums and Guinness and Jameson lightened our misery. Now we are involved in the struggle to get some refund for our week extended hotel costs, it should work out well, we were flying to a EU country.

About a month earlier, my flight from New York to Stockholm via Iceland, was delayed due to a smaller volcano eruption.

Martin Naughton

I’m delighted to be writing this short introduction to the west region newsletter! Having a west region newsletter has many benefits but I’m particularly delighted is it marks a milestone in the journey of restructuring ENIL as an organization.

This journey began in earnest when the board of ENIL made the decision to restructure in mid 2009.

The new regional structure should ensure that ENIL has the capacity to empower members and to enhance networking and leadership opportunities.  It also ensures that ENIL is operating in a manner that is true to its status as a grassroots membership organisation. 

The board of ENIL have started the change by showing flexibility and leadership. The challenge for us on a regional level is to work together to achieve change in a cohesive way. We do it better when we do it together!

The newsletter and blog are platforms for you to share with others what you are doing. If you’re doing something good, by sharing it you are giving others the confidence to do something as well.

Are you having a march this year? Are you holding a conference? Is there someone in your organisation who would translate articles from English into your national language? Do you know any disability activists who would share their stories with us?

By working together as a region, we can bring life to the UN convention on the rights of persons with disabilities and turn policy into reality.

Before I go, I would just like to introduce some people who are very committed to making the west region work – Naoise Cunningham who is Development Officer with Carmichael CIL in Dublin (Irish National Centres), her colleague, Caitriona Kenny (see her interview), Debbie Jolly, based in Leicester in the UK, Jenny-Anne Lynch, Communications Officer with ENIL based in Dublin and Katharina Gintarra.

We owe a great deal to Katharina. Katharina is over with us on a student exchange for a three month period. During her time here she has been busy translating English reports to German; she has talked to the key activists in the eleven countries in the west region, finding out more about what’s happening and persuading them to engage more with ENIL. I’m not sure what we’re going to do when Katharina’s time with us is up at the end of May. You can read her article on ‘Person centred lifestyle planning.’

Look forward to seeing you all at the General Assembly in September. Remember, ENIL is your organisation!

The Expertise Centre Independent Living  and the European Network on Independent Living (ENIL) invite you to the international conference ‘Independent Living through direct payments’ on the 3rd  and 4th of June in Gent, Belgium.

The Expertise Centre Independent Living is a partnership between grassroots organizations working with and for disabled persons (and their representatives) that builds up expertise about direct payments. The power of direct payments is that disabled people are granted a budget so that they are able to organize their support independently of others.  The goal of our organization is the empowerment of disabled people so that they may lead an independent life.

The European Network on Independent Living (ENIL) is a European wide network of disabled people. It represents a forum intended for all disabled people, independent living organizations and their non-disabled allies on the issues of independent living and the independent living movement.

In June 2010 (03 and 04 of June), the Expertise Centre, in collaboration with the European Network on Independent Living ENIL, organizes the 2-days international conference called ‘Independent Living through direct payments’. The focus of the conference will be aimed at the national and international audience of people with a disability. Apart from presenting our research results, there will  be a great opportunity for international networking, exchange of expertise, experiences  and debates.

The following topics will be discussed:

Current situation of working with direct payments in Belgium

  • Quality of Life for users of a Personal Assistance Budget: conclusion of a new scientific research.
  • The Personal Budget in the Netherlands.
  • Personal Assistance in Sweden
  • Market forces in the support of disabled people. 

The working language of the conference will be English (depending on the public and budget there might be a translation into French).

There is no participation fee for attending the conference. Participants will be provided with materials, coffee breaks and a sandwich lunch. However, participants are responsible for making their own travel and accommodation arrangements and also for covering their own travel expanses, hotel and food costs. The Expertise Centre Independent Living has put a list with accessible hotels on the website. We took an option on all these rooms, so explicitly mention the international conference when you book and book as soon as possible.  As there are not many completely accessible rooms,  please only take a room that is accessible according to your own needs.

For registration form, a list of accessible hotels in Gent, program, location of the conference, transport – please see our website www.independentliving.be and/or contact Maja Wojcik, maja@independentliving.be, tel: + 32.9.324.38.77

Expertise Centre Independent Living

Kerkstraat 108

9050 Gentbrugge


Tel: +32.9.324.38.77

Fax: +32.9.324.38.79



The Expertise Centre Independent Living was launched in February 2009. The centre gathers knowledge about direct payments for the support of disabled people. Direct payments are a powerful tool in the sense that people can dispose of their own budget which enables them to control the care instead of depending on it. Our mission is to become the expertise centre ‘par excellence’ concerning direct payments. Our goal is the empowerment of disabled people so that they may lead an indepen­dent life.


At the end of 2007, Adolf Ratzka (Independent Living Institute, Sweden) and Jan-Jan Sabbe (budget holders association BOL-BUDIV, Belgium) come to the conclusion that there exist interesting practices of personal assistance in different countries. The problem however is that we do not learn from our mutual experiences. And that is how the idea originates to found an expertise centre for independent living.

Jan-Jan Sabbe thinks big and dreams of an Independent Living Center where people can share experiences and find information, expertise, individual services, lobbying services. And his dream comes true. At his own risk he engages an employee who looks into the possibilities for grants. Somewhat later on he calls in the budget holders association BOL-BUDIV which presents a project for an expertise centre and starts lobbying.

When Jan-Jan unexpectedly passes away, BOL-BUDIV decides to let its employee finish the work. In July 2008 the Flemish government and the European Fund for Regional Development each give a grant of 209.580€ to this new initiative. The planning is further elaborated, an additional employee is recruited and later on that year the Expertise Centre Independent Living gradually evolves into a partnership.

What do we do?

The Expertise Centre is a cooperation which is now supported not only by the budget holders association BOL-BUDIV but also by other Flemish organizations like: GRIP, VFG, Focus op Emancipatie and Onze Nieuwe Toekomst. Academics cooperate as counselors in this Expertise Centre. The Expertise Centre is subsidized by the European Fund for Regional Development and the Flemish Minister of Economy for a two-year period.

We do research into PAB (personal assistance budget) and PGB (personalized budget). We closely monitor the evolutions in Flanders. But we also have been looking beyond our own region. We gather expertise about good practices abroad through a network of experts.

All this knowledge is used for political lobbying and is also made public. We disseminate the results of our work via our website, research reports and a newsletter. Recent research reports concern  ‘Direct payments in the care in 8 European countries’, ‘Market forces in the support of disabled persons’ and ‘PGB in the Netherlands’.

The newsletter and website are not only available in Dutch but also in English and partly in French. The idea is to go international. That is why we are closely cooperating with the European Network on Independent Living (ENIL), with the Independent Living Institute in Sweden, with Per Saldo (budget holders association in the Netherlands) and why are actively participating in international conferences (25 years of Independent Living in Sweden, Freedom Drive in Strasbourg, Day of PGB in the Netherlands).

Also, in collaboration with the European Network on Independent Living ENIL, the Expertise Centre Independent Living, organizes a 2-day international conference called ‘Independent Living through direct payments’ on the 3rd and 4th  of June 2010 in Gent (Belgium). The conference focuses on a national and international audience of people with a disability. Apart from us presenting our research results, there will  be a great opportunity for international networking, debating, and exchanging expertise and experiences.



Our focus group consists of all disabled people.

The centre is mainly led and controlled by disabled people or persons who are directly concerned. This also goes for the personnel and the executive committee.

We acknowledge the importance of peer counseling, by which we mean the expertise gathered through daily living with a handicap.

We promote the concept of peer counseling: a mutual exchange of information and advice between disabled people who find or have found themselves in the same situation.

We fight discrimination of disabled people.

We promote working with direct payments.


Direct Payments

We promote working with direct payments. This means:

The budget is personalized and is destined for the disabled person (or his/her representative). The disabled person is thus the budget holder. The subsidies no longer go directly to the care providers.

 Disabled people can freely determine the amount of control they exercise over their own assistance; assistance which corresponds with their needs, abilities, actual living conditions, preferences and desires.

This freedom of choice also includes the right of the disabled person to determine the content of the assistance all by him/herself. The budget holder decides who is to work as an assistant, for which assignments, at what time and where and how the assistance is to take place.

The future

The Expertise Centre Independent Living would like to become an international expertise center on direct payments and situation of disabled persons in different countries. By doing so, we believe we would be supporting people with a disability in their rights for freedom of choice and for a dignified and independent life.

Expertise Centre Independent Living

Kerkstraat 108

9050 Gentbrugge


Tel: +32.9.324.38.77

Fax: +32.9.324.38.79