The proposal from the European Commission would fall short of equal citizenship for disabled people.
In September, the European Commission presented a proposal for a European Disability Card and an associated European Parking Card. In the ‘recitals’ this refers to the fundamental right of every citizen to move and reside freely within the territory of the member states. The commission proposes to support disabled people in exercising this right by granting the holders of a Disability Card access to special conditions and preferential treatments vis-à-vis services, activities and facilities.
This would include ‘free access, reduced tariffs, reduced fees or user charges for toll roads/bridges/tunnels, priority access, designated seats in parks and other public areas, accessible seating in cultural or public events, personal assistance, assistance animals, assistance on the beach to enter the water … Parking conditions and facilities include extended parking or reserved parking spaces.’ Passenger-transport services would be included—although, critically, social protection and social assistance would not.
The proposal fails however to tackle the key obstacles to freedom of movement for disabled people or to ensure their participation in political decisions which concern them. The European Network on Independent Living (ENIL) and the European Disability Forum (EDF) have proposed amendments which would solve both problems.
Unable to travel
In the EU 1.4 million disabled people are confined to institutions. They are not allowed to leave the nursing home or group home they inhabit and so cannot travel. Thus it will not be possible for them to reap the benefits of the Disability Card.
Many disabled people who live independently require disability-specific services to be able to leave their accommodation and go to work or university—to have a normal life. Personal assistance is one of the most important. A personal assistant accompanies a disabled person for as much of the day as needed and assists with many tasks. It is a service which has to be under the control of the disabled person. The personal-assistance service referred to in the proposal for a directive does not equate to this.
Without such services, it is not possible for many disabled people to go to another country—neither long- nor short-term stays are feasible. Only a few EU countries allow for personal assistants to accompany the person they support for short touristic stays. No country recognises an eligibility for personal assistance granted abroad.
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When moving to another country, disabled people thus have to repeat all assessment procedures. Because these procedures are slow and foggy, they can take years. Yet access to services is needed from day one if a disabled person is to move at all.
Unless this problem of access to services is solved, disabled people will remain largely excluded from the benefits of the directive envisaged by the commission. Only disabled people who possess their freedom and are wealthy enough to pay for personal assistance out of pocket will be able to use the cards.
Given that disabled people face exclusion from employment—50.6 per cent are employed, compared with 74.8 per cent of persons without disabilities—while receiving low wages in work and being at high risk of poverty, that group is small. The European Disability Card will thus create new inequalities within the disability community itself.
There is a solution to the problem. The EDF proposes in its amendments a temporary protection mechanism. Holders of a European Disability Card would enjoy access to social services, assistance and benefits if they moved to another member state while holding a work contract in that country, or while enrolled in an educational institution or an EU mobility project, until their disability had been reassessed in the new country. To be effective, automatic access to the public personal-assistance scheme and other disability services and benefits would have to be included. It is regrettable that so far EU member states are refusing to discuss such an option.
The directive proposes that the commission will ‘consult experts’ before adopting a delegated act, detailing implementing measures, and ‘shall be assisted by a committee’. The involvement of disabled people and their representative organisations is so far not foreseen.
The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) however obliges states-party to consult and actively involve disabled people and their representative organisations in the development and implementation of policies concerning them. The EU grants employers and workers (if only on occasion in practice) the right to be involved and decide on their affairs through social dialogue. It is unjustifiable that the same right is not extended to disabled people.
Participation should not be empty and tokenistic but carry weight. ‘Co-production’ is a concept according to which decision-makers and disabled people should share power in the design and implementation of policies on disability.
Here the required amendment to the directive would be simple. One would only have to add that ‘delegated acts shall be produced in co-production with disabled people and their representative organisations’. Organisations representing disabled people are called disabled people’s organisations (DPOs). To qualify as a DPO an organisation’s board and the membership must consist of disabled people. Such participation would lead to more inclusive and socially fair outcomes.
Despite the criticism, the European Disability Card is to be welcomed overall. It will make the lives of some disabled people easier and it sets a precedent which might help to push for more in the future.
But the cards have the potential to be more than a small step in the right direction. The technical work has been done. The amendments proposed by the ENIL and the EDF are ready for use. All the European Parliament and the member states have to do is find the requisite political will. Eliminating discrimination and exclusion should be in everyone’s interest.
Florian Sanden is policy co-ordinator at the European Network on Independent Living. A political scientist by training, he is an activist for disability rights, transnational co-operation and social justice.