The International Labour Organisation (ILO) and ENIL co-produced a report on personal assistance titled “Towards Dignity and Autonomy: A Comprehensive Look at Personal Assistance Policies for Persons with Disabilities Worldwide”. This report compares personal assistance services across nine countries, looking at the structuring of service provision, working conditions of personal assistants, and training and support, ultimately evaluating the level of access and impact on the rights of disabled people.
The report is informed by ongoing international discussions on care and support. ENIL had reacted to the United Nations resolution establishing the International Day of Care and Support, to raise the alarm about the strong focus on providers, instead of on those receiving care and support. Personal assistance is a service that is meant to be controlled by the user, and it is a key tool to live independently for many users. Our report can inform those working on the care and support agenda to understand the value of services that challenge traditional care systems, and inspire to create support systems where disabled people have true choice and control.
We had the ambitious goal to write a report on personal assistance provision beyond Europe, looking at countries who have publicly established personal assistance services for disabled people, while trying to find a diversity of countries in terms of region and income. After our preliminary research, we decided to focus on nine countries: Costa Rica, Thailand, Japan, Republic of Korea, Taiwan, Serbia, Bulgaria, England, Slovenia and Sweden.
The report was written by our consultant, Lilia Angelova-Mladenova with support from our Human Rights Officer, Rita Crespo Fernandez. To gather information, we conducted a series of interviews with organisations, disability advocates and experts from the focus countries. We thank them for their support in providing information and translating documents.
The report has three key sections: a country overview; personal assistance models and independent living; and training and support. These were the key findings:
To build quality personal assistance services, we need the following elements:
- Direct payments to maximize choice and control
- Personal assistance is provided equally across the country
- All costs related to personal assistance are covered
- Sufficient flexibility to determine the number of hours
- Services are designed by persons with disabilities, in line with the principles of independent living
To establish decent working conditions for personal assistants, we observed that:
- Stable employment contracts ensure the same rights as other workers
- Decent wages improve retention and quality of life
- Visibility and recognition can help reduce workforce shortages
To ensure training and support is offered and enhances the quality of the services, we need:
- Training and support for users enables choice and control
- Disabled people themselves provide the best training for personal assistant
- Preventing harassment and abuse through training and support
The report provides great insight and recommendations to policymakers, service providers, and all other stakeholders involved. You may use it in your advocacy by supporting the dissemination – and you have an advocacy factsheet to help with this – and by integrating the information from the report in your key messages.
On 6th March, we organized a webinar to launch the report. We had key presentations from Lilia Angelova and Nadia Hadad, from ENIL, Amalia Gamio, member of the Committee on the Rights of Persons with Disabilities, Naoki Okamoto, board member of the Japan Council on Independent Living Centers and personal assistance user, and Jamie Bolling, director of the Independent Living Institute in Stockholm and ENIL’s co-Chair. The webinar was moderated by Stefan Tromel, ILO Senior Disability Specialist. You can watch the recording of the launch webinar here
You may click on the following links to download:
The full version of the report
For more information, please contact rita.crespo-fernandez@enil.eu
