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Newsletter Expertise Centre Independent Living : June 2009
Preface
Welcome to the first newsletter of the Expertise Centre Independent Living!
The Expertise Centre is a partnership between grassroots organizations working with and for disabled persons (and their representatives) that want to build up expertise about direct payments. The acquired knowledge shall be used for lobby work in Flanders. We want to disseminate information about working with direct payments by means of a website, survey reports and a newsletter.
Through this newsletter we want to inform you about our organisation and the progress of the Expertise centre. We email this newsletter to a list of addresses of experts. Experts in the field of living with a disability, on working with direct payments, the organisation of care, the support of and the policy with regard to people with a disability.
Since this is our first newsletter, we first present our mission statement, common vision and organization structure. The following articles will be about direct payments in 8 European Countries, complimentary information about 4 additional countries, the pgb experiment in Flanders and the implementation of a new decree in Flanders that gave rise to major discussion.
You will receive this newsletter in the form of a simple email, with a preface and a summary/overview of all the articles. In order to go to the extensional texts and the used sources, just click on the links.
Do you also have news concerning direct payments? The situation in your country, recent evolutions our newly published research reports on this theme? We would like to give it the attention it earns in our following newsletter published in October 2009 or on our website.
We hope you appreciate this information. We welcome any reaction at info@independentliving.be.
We would like to thank you for your attention and for promoting this newsletter.
Mission
"The Expertise Centre Independent Living is to become the expert Centre par excellence concerning direct payments. The goal is the empowerment of disabled people so that we may lead an independent life."
Common vision
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.
This should become a tool for all disabled persons, so not only for people with a physical handicap.
We recognize the importance of peer counselling. This is expertise gathered by people who experience on a daily basis what it means to live with a handicap.We promote colleague-to-colleague advice. This is an exchange of information and advice between people that find or have found themselves in a similar kind of situation.
We fight against the discrmination of disabled people.
We promote working with direct payments :
- The financing of the support benefits to the disabled person and not the person providing the support.
- Users are free to determine the amount of control over the support that corresponds to their needs, abilities, actual living conditions, preferences and planning.
- This freedom of choice includes also the right to determine the content of the support all by themselves, which implies that the user decides who works as an assistant, for what tasks, at which time and which places, and how the providing of assistance shall be happening.
Organization structure
The user organizations participating in the expert center will become shareholders. This means that they will themselves bring in expertise and act as driving forces behind the expertise center. Their share is described in a declaration of engagement and will be determined in agreement with the existing shareholders and according to their capacities.
The budget holders association Bol-budiv has been the principal shareholder from the start because it has the largest input into the expert center through an EFRO project. There is a growth pattern which foresees the possibility of an independent entity.
The Expertise centre has been established by disabled people.
The steering committee gathers every two months. This steering committee consists of delegates of the partner organizations that focus on all disabled people
- The steering committee will assess and adjust the project.
- It will be competent to formulate position statements regarding the PGB experiment.
- Each shareholder is responsible for his own personnel.
A team of professionals works in close collaboration to reach the goals of the expertise centre. Academics give recommendations and help to expand the expert center. They attach themselves to the Expertise centre as advisors.
First report: 'Direct payments in the care: current situation in 8 European countries'.
The Expertise Centre Independent Living has finished its first report and translated it to English and French: 'Direct payments in the care: Current situation in 8 European countries'.
This inquiry describes the frameworks of working with direct payments in the Netherlands, England, Sweden, Norway, Spain, France, Germany and Finland. We have based our inquiry on official documents as well as on investigation reports and interviews with local experts. This has enabled us to gather a lot of information in a short period of time. But lots of questions remain and we were tempted to go deeper into specific matters or to describe a more general context like e.g. the social security system of a country. This however was not the purpose of this article.
Per country we will outline how many people are concerned, what budgets are worked with, what the possibilities are and also what is the ongoing political and public debate surrounding the subject. We have come to the conclusion that in each of the 8 countries that we have taken a close look at, there exists some sort of a system of direct payments. In the Netherlands, England, Finland, Sweden, and Norway this is even a current practice. In Sweden it is a legally enforceable right already for some time, in Germany this is the case since recently and in Finland legal anchorage is being considered as well. Spain started experimenting only recently.
We will conclude this article by emphasizing some recurrent main characteristics and some remarkable highlights. We hope to inspire you and pique your curiosity for further inquiry. Because that eventually is the ultimate goal of the Expert Centre Independent Living:
"To become the expert centre par excellence concerning direct payments. The goal is the
empowerment of disabled people so that we may lead an independent life."
To read the full report, click on the link below:
First report: Direct payments in the care: current situation in 8 European countries
Infosheets direct payments in European countries.
The first report of the expertise centre Independent Living was entitled 'Direct payments in the care. Current situation in 8 European countries' and was published in February 2008. It contained an overview of the way in which direct payments are organized in the Netherlands, Germany, Sweden, the United Kingdom, Spain, France, Norway and Finland.
We would have liked to extend the research to all European countries, but we lack the means to that end. That is why we have asked some experts in the field of direct payments to give a brief overview of the current situation in their respective home countries. As a support we have used a questionnaire. Thanks to the people that have responded to our emails we have been able to gather this extra information.
As a result this text does not pretend to be exhaustive. The idea is to just give information about the most important initiatives of direct payments in different European countries.
We got reactions from Switzerland, Ireland, Slovenia and Italy:
In Switzerland there exists a restricted system of direct payments for over 20 years: "the impotence allowance". At the moment there is also a pilot project for a real personal assistance budget. In Ireland there is only a regional arrangement (not a law)on direct payments and to some extend personal assistance. In Italy the initiatives with regard to direct payments take place on the national, municipal and regional level. As the contribution on the national level is restricted, it is necessary to be supplemented by regional or municipal initiatives. This makes that the situation in Italy can be different, dependent on where you live. In Slovenia there is no system of direct payments, but there are some small projects concerning personal assistance.
First of all we want to thank the experts for this interesting information. Secondly we want to emphasize the fact that extra information about other countries is very welcome.
You can find the questionnaire and the full reports on the links below.
- Info sheet Switzerland
- Info sheet Ireland
- Info sheet Italy
- Info sheet Slovenia
- Questionnaire
The pgb experiment in Flanders.
In 2001 the Flemish Parliament ratified a decree concerning the introduction of a personal budget ('persoonsgebonden budget (PGB)') tot finance the support for people with a disability. The goal of this decree was the assignment of an individual budget tot disabled people with which the should be able to recognize as a disabled person coming from two different regions could take part in this experiment. At the end of April 2009 the participants finally received a letter with the results of their assessments and the budget they were granted. At the end of April 2009 the participants finally received a letter with the results of their assessments and the budgets were granted. Only as from the middle of Juni 2009 the budgets will be paid out. The experiment ends 31 December 2010.
The experiment aims at the investigation of the way personal budgets might contribute to a demand based support. From the start the government has emphasized a scientific guidance aimed at a thorough study of the subject. An expert committee is ordered to operationalize this experiment. Also disabled people had a voice in this expert committee.
As the Expertise Centre is involved in the expert committee we find it important to make both a report and a reflection on this experiment.
In this article we will establish an overview of the actual situation concerning the operationalization of the experiment. In a chronological order we will go through the different subsequent stages since the selection of the participants in 2008. But this article is more than a report. It is also a statement about some choices that already raised question marks from our point of view.
Please click on the link below to see the full report:
The PGB experiment in Flanders
First implementation regulation of the Flemish Decree on care and assistance
Last year, on the eve of the summer holidays, the Flemish Parliament has adopted a framework Decree that sets up the legal conditions for the professional delivery of care and assistance in Flanders.
A first execution has recently been given to this decree. From 22 May 2009 on, only persons who fit the qualification criteria of the licensed home care services are allowed to deliver paid assistance at the user's home with daily activities, such as moving, dressing, eating and drinking, using the toilet and even making social contacts.
For a further analysis and critical comment on this new government measure, see the contribution of Jos Huys on the link below.
First implementation regulation of the Flemish Decree on care and assistance.
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