The European Strategy on the Rights of Persons with Disabilities is the European Union´s framework in the area of disability policy for the period 2021-2030. Most of the key initiatives pursued in this timeframe are contained within the strategy. One of those is for example the Guidance to Member States on Independent Living and inclusion in the community. In 2023, ENIL published a detailed proposal to the guidance and presented it during an event in the European Parliament. All initiatives under the EU Disability Strategy are listed here.
The first set of initiatives only covered the period 2021-2024. New actions for the time until 2030 are needed. ENIL is presenting detailed input. An important objective of our recommendations, is to contribute to the implementation of the Concluding Observations (COs) of the Committee on the Rights of Persons with Disabilities (CRPD-Committee).
What are we proposing?
Our recommendations are grouped into 8 thematic areas:
- Improve implementation and monitoring of the UN CRPD
- Use EU Funds to support Independent Living
- Facilitate new pathways for labour market inclusion
- Support the establishment of personal budgets
- Promote full legal capacity for disabled people
- Reinforce equal treatment
- Improve data collection
- Support Independent Living around the world
All thematic areas contain various recommendations. The present article will present one example from each thematic area.
Implementing the UN CRPD
To support state parties in implementing the UN CRPD, the CRPD-Committee publishes General Comments which are authoritative, e.g. there should be no deviation. General Comment No 5 on living independently and being included in the community states that:
“To respect the rights of persons with disabilities under article 19 means that States parties need to phase out institutionalization. No new institutions may be built by States parties, nor may old institutions be renovated beyond the most urgent measures necessary to safeguard residents’ physical safety”.
Despite these clear instructions, new institutions are being build with EU funds as ENIL research shows. In its combined second and third periodic report the European Commission explained “… national authorities can in some cases use EU funding for residential care facilities, since investments in institutions are not prohibited by the applicable legal framework”. Internal Commission documents support this approach. Since there are no signs that a revision of this policy will take place, the CRPD-Committee is in doubt whether the General Comments are accepted as authoritative by the EU:
“That even after the Constructive Dialogue with the EU’s delegation, there remains some uncertainty as to whether the European Union accepts the Committee’s interpretations of the Convention, including those espoused in its General Comments, as authoritative;”
ENIL shares this concern and is asking the European Commission to change its policy. We are recommending the “adoption of a binding legal guidance or opinion recognising the interpretations …. Issued by the Committee on the Rights of Persons with Disabilities in the form of General Comments and Guidelines as authoritative”.
EU funds and the support to Independent Living
As already mentioned, the UN CRPD does not permit state parties to build new institutions but EU funds are still being used for that purpose. In 2024, the European Commission adopted “Guidance to Member States on Independent Living and inclusion in the community”. The European Commission accepted input provided by ENIL and the Guidance unequivocally calls on Member States to use EU funds to expand community-based services. Unfortunately, the Guidance is not legally binding but the already mentioned legal notes and guidance documents are.
To remedy the problem, ENIL recommends the withdrawal of the European Commission Legal Service note of 29 June 2018 (Ares[2018]2249997) and the adoption of a new legal service note. This note should accept the obligation to deinstitutionalise and expand community-based services and call for a redirection of EU funding. Such a change would make a significant difference.
New pathways for labour market inclusion
Income from work can reduce dependence on the state to provide goods and services. Good employment can enhance well-being. Since 2010, the disability employment gap has not significantly reduced in the EU. The latest figures show that 51,3% of disabled people are in employment while 75,8% of non-disabled people have work.
The reasons for this outcome are various. Educational outcomes and discrimination are certainly among the causes. Another key barrier is the strong reliance on sheltered employment. When it comes to choosing between instruments, authorities rely on this particular form of support as the default option. For example, authorities in Germany are spending at least EUR 33,34 million to build or renovate new facilities. Authorities in Sweden are subsidising the provider Samhall with EUR 500 million per year. A more extensive list is available in an ENIL publication dedicated specifically to that matter. Unfortunately, sheltered employment is dramatically ineffective in securing transitions into proper work. According to a recent study produced by the European Commission, transition rates often do not exceed 1%.
The same study informs us that there are instruments grouped under the term “supported employment” which are much more effective. Transition rates reach up to 65%. While sheltered employment receives a lot of resources, supported employment programmes are very small if they exist at all. Things should be the other way around.
Is there anything the European Union could do to contribute to such a change? In 2023 and in 2024, ENIL has build up evidence indicating that it very well could.
The reason is to be found in competition law, an area of policy making in which the EU has exclusive competence. It grants the Union the ability to regulate under which conditions national authorities are allowed to subsidise the provision of goods and services. Subsidisation is usually only permitted as long as competition in the internal market is not affected. The EU takes into account the need to support the employment of disabled people. Because sheltered employment is seen as a legitimate service, subsidies going to providers are usually approved. EU law allows the subsidisation of supported employment, such as personal assistance at work, too.
Through a simple legal change, the European Commission could remove the permission of subsidies going into sheltered employment and thus increase the resources available for more effective instruments.
ENIL is recommending to make the reform of state aid legislation a topic in the second part of the EU disability strategy and formulate actions which aim to redirect funding.
Expanding the availability of personal budgets
Personal budgets are a form of monetary support which transfer funding directly, allowing the disabled recipients to purchase the required services themselves. They can take the form of direct cash allocations or virtual budgets. Very often personal budgets are used to hire personal assistants but also other services such as peer support can be purchased.
The availability of this form of monetary support is a key factor if Independent Living is to succeed. Personal budgets exist in many EU countries, for example the northern region of Belgium, Germany, Sweden or Denmark. Almost all countries refrained from designing schemes that would allow widespread availability. Sweden has been introducing measures which increasingly restrict access for a decade.
If we want Independent Living and Deinstitutionalisation there is no choice but to change course. Personal budgets need to become widely available throughout the EU.
ENIL is thus recommending reinforced EU action in this area. The EU Disability Strategy should make personal budgets a central topic and foresee actions to expand availability which could be achieved by preparing a directive for joint standards and/or adopt Guidance to Member States to encourage the use of the Technical Support Instrument.
Any activity must entail full alignment with the UN CRPD.
For the right to legal capacity
Efforts are underway to implement the 2000 Hague Convention on the protection of vulnerable adults in the EU by adopting a regulation with the same title and approving a Council decision authorising ratification by member states.
The 2000 Hague Convention aims to establish procedures to protect adults who due to an alleged insufficiency of their mental faculties are in no position to take decisions about where to live or what to do with their property. Measures are listed which authorities are to take when they become aware of such an adult who finds himself in a cross-border situation. Those measures include the imposition of guardianship or curatorship, transferring the legal right to decide over the persons´ property to a court or placing the adult in an institution.
The 2000 Hague Convention is a pre-UN CRPD document. Under the UN CRPD the assumption that someone might be unable to take decisions about their lives no longer exists. Disabled people have the right to legal capacity on a level equal to others. All forms of substituted decision-making have to be replaced by supported decision-making.
ENIL has been lobbying the European Union since early 2024 to halt the implementation of the 2000 Hague Convention or make drastic changes to the regulation. Our campaign achieved an important success. The European Parliament accepted our recommendation, to remove substituted decision-making from the regulation and convert it into legislation about supported decision-making.
So far, only the European Parliament supports the changes ENIL is proposing. The European Commission is still promoting the approach of the Hague Convention. We are strongly recommending changing this position.
For part II of the EU disability strategy we are recommending to adopt an initiative in favour of strong legislation on the cross-border coordination on supported decision-making.
Equal treatment for Independent Living
The European Union has been working on a directive implementing the principle of equal treatment between all persons irrespective of religion or belief, disability, age or sexual orientation since 2008. The objective of the directive is to ban discrimination in the areas of social protection, including social security, healthcare, education and access to goods and services, including housing.
After 17 years of negotiation, the European Commission announced this February to withdraw the directive. Since better antidiscrimination legislation in the aforementioned areas is very much needed, ENIL and many other organisations expressed great disappointment about the decision. Against all hope, at the end of July the Commission announced to reverse the withdrawal. The negotiations can continue.
For ENIIL it is evident that the focus going forward can not exclusively be on somehow getting the directive adopted. We must also strive to increase the quality of the legislation. So far, the document overlooks the discriminations disabled people confined to institutions experience. We are recommending to amend the draft directive and explicitly mention that disabled people in institutions must have access to social protection, including social security, healthcare, education, goods and services, including housing, on a level equal to others. Provision must take place in the community.
We are asking the Commission to use the EU disability strategy to commit to this objective.
Better data for better policies
EU disability policy is significantly held back by the insufficient availability of statistical data. Only when it comes to employment do we have up-to-date data. When it comes to the number of disabled people in institutions, we have to rely on occasional studies conducted by independent researchers. We do not know how many disabled people in the EU receive personal budgets or are personal assistance users. We do not know how many are deprived of their legal capacity or benefit of supported decision-making. The Concluding Observations of the CRPD-Committee are consistently documenting discrimination but we do not know how many disabled people exactly are excluded from accessing social protection or housing.
Due to the statistical data on employment, we know that the current policies are not effective and need improvement. Due to the lack of data on all the other areas we do not know to which extent the instruments in place are working or not.
ENIL recommends the expansion of data collection on disability at Eurostat. It goes without saying that information has to be collected according to state of the art ethical standards, protecting the privacy of individuals.
We are recommending that the Independent Monitoring Framework should, in cooperation with Eurostat, produce methodologies and plans of action for the collection of statistical data on the situation of disabled people.
Independent Living around the world
It is the proclaimed objective of the EU to promote human rights worldwide. According to the CRPD-Committee the Union is for now not using its potential to promote the rights of disabled people world-wide.
The European Union maintains 140 delegations around the world. It’s the largest donor of development aid. All countries applying for EU membership have to implement our legal acquis.
ENIL is recommending steps to add substance and consistency to the promotion of disability rights in the EU foreign and neighbourhood policies.
In concrete, we recommend an action aiming at earmarking an adequate budget to the promotion of Independent Living in EU external action.
