Freedom Drive 2024. Policy Report. Person holding a megaphone

The Freedom Drive 2024 was a vibrant space for the exchange of innovative practices to make progress towards Independent Living of disabled people. The event set crucial impulses for activism and advocacy for policy changes.


By Florian Sanden, florian.sanden@enil.eu


The Freedom Drive 2024 is over. From the 23rd to the 25th of September over 300 participants, the overwhelming majority disabled people, where with us in Brussels. In several events they discussed crucial topics with high-calibre speakers. During our protest, they raised their voices to push for a stop to segregation and full support to inclusion and empowerment.


Injustices and human rights violations against Disabled People


Member of the European Parliament Katrin Langensiepen, host of our Parliamentary hearing, outlined some of the injustices and human rights violations disabled people still encounter. Langensiepen is disabled herself and had to overcome the discriminatory attitude that no one wanted to see her in front of a camera which was communicated to her frequently. She refused to let herself be intimidated and became an MEP.


“No one has the right to tell me what I am able to do”.


Unfortunately, disabled people are almost not represented in the European Parliament. Out of over 700 Parliamentarians, only 3 are disabled.


Addressing the Freedom Drivers, Langensiepen strongly criticised the fact that disabled women in institutions frequently become victims of forced sterilisation. Governments and authorities were still committing the bulk of financial resources on maintaining segregating services like institutions and sheltered workshops. The behaviour of providers of such services could be very disgraceful:


“They treat you, they spit on you, they fight for the system”


Pathways for change


It is the objective of each Freedom Drive to promote and refine the many different approaches that are needed to combat injustices committed and dismantle barriers. ENIL and the broader Independent Living Movement are undertaking major efforts to convince governments and authorities to stop supporting services which are discriminatory and harmful and instead build a system consisting of services which are person centred and empower.


During our hearing in the European Parliament and the conference, ENIL Policy Coordinator Florian Sanden, highlighted the essential topic of funding. The public sector was keeping a failed system of segregating services alive by spending enormous financial resources, through EU Funds, through targeted subsidies and through social security.


Personal Assistance


The disability researcher Dr Teodor Mladenov from the University of Dundee, discussed the paradigm shift initiated by the United Nations Convention on the Rights of Persons with Disabilities. Instead of the traditional approach of regarding disabled people as objects of care, they were no to be seen as holders of equal rights, being endowed with self-determination.  


Personal assistance is a key service embodying this change. Personal assistance is a service were, depending on need, one or several people support the disabled person throughout the day for as many hours as needed, with any task that is required.


Under traditional care services, people receive support with clothing, hygiene and eating only. Personal assistance is fundamentally different because the assistants will accompany the beneficiary to any place desired, to work, to the university class or for a walk in the park. The assistants will all tasks the disabled person might need help with. Only the disabled person decides what will be done.


Klaudijat Poropat from YHD in Slovenia, a service provider run by disabled people, presented the state of personal assistance in the country. In 2017 a law on Personal Assistance was adopted by the Slovenian Parliament for the first time. The new Personal Assistance scheme made it possible for disabled people to receive up to 24 hrs of support per day. By now 8000 personal assistants were employed in Slovenia.


Klaudijat also highlighted various problems connected to the implementation of the Personal Assistance Scheme. Half of the assistants employed were family members of the disabled people benefiting. People over the age of 65 were excluded from the scheme. The majority of providers in Slovenia were running their services like home care services, completely nullifying the empowering benefits of personal assistance.


The 15 pillars of Independent Living


As some participants of the Freedom Drive rightly pointed out, personal assistance is not enough to guarantee disabled people can live in self-determination. Depending on the support needs, a variety of services can be required. That is why in 2010, the Hampshire Centre for Independent Living in the UK adopted the 12 pillars of Independent Living which present a full picture of the various requirements. “Personal Assistance, Individual support controlled by disabled people” is one of the requirements. Others are the “Peer support, including peer support groups and peer counselling” or “advocacy: Individual and systemic”. Recently, ENIL has proposed to include several new pillars, for example “access to supported decision-making”, “access to legal-aid” or “access to sexual and reproductive rights” under the concept.


Centres for Independent Living


Centres for Independent Living can have a pivotal role in helping disabled people accessing the various services they might need. Some might need more services, some less. Centres for Independent Living are organisations which are owned and run by disabled people and for example provide support in being a personal assistance user but also help with accessing a variety of other services.


Diogo Martins from Portugal, explained how the Centre of Independent Living he works with started out by implementing personal assistance on a local level, in Lisbon, first and then expanded to the national level. From 2019 to 2023 a EU funded personal assistance pilot project was run in Portugal. Since the end of 2023 a Personal Assistance law exists in Portugal.


Diogos´ Centre for Independent Living is supporting the implementation of the Portuguese Personal Assistance Scheme by training beneficiaries, by providing peer support so users can exchange experiences in a safe environment and by producing expertise.


Impulses for policy


The United Nations Convention on the Rights of Persons with Disabilities set the base for a policy agenda to be developed by state parties. It did not endow the individual disabled person with rights they can claim before the courts. To implement the Convention, state parties need to develop policies, laid down in legislation. The many examples of good practice presented during the Freedom Drive, will help Independent Living activists to push for better policies.


ENIL is tasked with pushing for policies at the level of the European Union. A key instrument to effectuate change are EU policies on dispersing the considerable financial means of itself and of the Member States. Until 2027 the European Social Fund+ has EUR 142 billion at its disposal. To make it possible that a larger amount of these resources is used to fund Independent Living projects, the Common Provisions Regulation and the Regulation of the European Social Fund need be changed. We need paragraphs making it clear that funds intended for disability services need to be Independent Living compliant.


The regulation on services of general economic interest and the general block exemption regulation, allow the European Union to have a say on how Member States subsidise services from their own budgets. It is the duty of state parties to mainstream the provisions of the UN CRPD into all policy areas. EU state aid law has thus far remained untouched by concerns about the rights of disabled people. ENIL will change that.


Article 153 (k) of the Treaty gives the EU the competence to complement Member State´s activities to modernise their social protection systems. All Member State needs to modernise the way their social protection systems support disabled people by introducing personal budgets and personal assistance that function according to a high standard. In recent years, the EU has been adopting more social policy legislation, among them a directive on work-life balance and a directive on minimum wages. A broad coalition of social NGOs is advocating for a directive on common standards for minimum income schemes. ENIL will push the EU to adopt a directive on joint standards for the personal budget.


Such a directive could help us ensure that every Member State introduces the personal budget, that one of the most important services it should cover is personal assistance and that all national rules must be well funded and UN CRPD compliant.


During the Freedom Drive it became clear that many disabled people want the EU to be considerably more ambitious in its policy making to push their governments into doing more.


The legislative changes outlined here can bring us a long well towards our objectives. Let us engage!