Coming EU guidance on independent living should not squander the chance to improve the lives of millions of disabled people.
Disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society. In the European Union some 87 million persons are disabled.
Disabled people cannot exercise the same degree of self-determination as non-disabled people—due, among other things, to lack of support services, insufficient access to housing and exclusion from work and income. When ratifying the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2011, the EU entered into a legally binding commitment to stop treating the disabled part of the population as second-class citizens.
As part of the EU’s Strategy on the Rights of Persons with Disabilities 2021-2030, the European Commission will by the end of this year adopt guidance to member states on independent living and inclusion in the community. Independent living refers to the ability to choose one’s living arrangements and to have access to all areas of life.
Ambitious guidance could provide a necessary course correction. The EU has not been living up to its self-defined goals, as demonstrated by the lack of disability-support services such as personal assistance. The Independent Living Survey of the European Network on Independent Living (ENIL) asked 143 disabled people considered experts on the topic to rate access to personal assistance (PA) in their country. In all member states, except Slovenia, access to this crucial service was rated ‘insufficient’ or ‘requiring improvement’.
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Governments are reluctant to commit significant resources to establishing personal-assistance schemes. In Belgium, after passing the complicated process to demonstrate eligibility, one faces a waiting list of up to 23 years for access to the personal budget required to secure PA. In the Spanish region of Andalucia, there are at the moment just 11 PA recipients.
Behind the numbers lie often dramatic individual fates. Losing this service might mean that a disabled person has to move into an institution, where their ability to lead a normal life is severely impaired and there is a strong risk of becoming a victim of abuse.
Right to ordinary lives
Disabled people have the right to live ordinary lives, the same as non-disabled people. Personal assistance can be key to making it possible to vindicate this right.
One of the founders of the Independent Living Movement, Adolf Ratzka, contracted polio at the age of 17. After five years in a hospital, his regional government in Germany granted him PA, which enabled him to move to the United States to study sociology at the University of California. After his return to Europe, Ratzka founded the first European PA-users’ cooperative, STIL.
Ratzka is now married with two children. Without PA it would probably have been his fate to remain in the hospital or move into a nursing home, alone and isolated from life.
Article 19(b) of the UNCRPD, the associated General comment no 5 (elaborating article 19 on the right to independent living) and the Guidelines on deinstitutionalisation, including in emergencies define PA as a one-on-one service based on the needs, wishes and authority of the disabled person. One or more personal assistants accompany the disabled person for as many hours of the day as needed and desired and perform almost any task the disabled person requests. The disabled person needs to be able to choose her or his support person(s).
There is a significant risk that the planned commission guidance to member states will not contain clear recommendations on the course to take on disability-support services. The commission, as also the European Association of Service Providers for Persons with Disabilities (EASPD), avoids using the clearly defined term ‘personal assistance’ and instead talks about person-centred services.
This latter notion does not appear in General comment no 5. It could take in small-scale institutions or home-care services where the only choice one might make would be whether to eat an apple or a banana (1:00:18). The commission appears to be acting very timidly, avoiding stepping on anybody’s toes—especially the member states’.
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There are encouraging signs too. During the launch of ENIL’s proposal to the commission on the guidance, a high-ranking official of the Directorate-General for Employment and Social Affairs acknowledged that personal assistance appeared to be a key service. It is the rather general statements (14:11:40) by the commissioner for equality, Helena Dalli, and members of her team, and their non-committal nature, which give rise to concern.
Due to the myriad human-rights violations committed against disabled people in the EU, we cannot afford to be timid. It is often argued that, when it comes to disability, the union has no competence. Yet under article 19 of the Treaty on the Functioning of the EU, ‘the Council, acting unanimously in accordance with a special legislative procedure and after obtaining the consent of the European Parliament, may take appropriate action to combat discrimination based on sex, racial or ethnic origin, religion or belief, disability, age or sexual orientation’.
We call on the commission—especially the political leadership in the college of commissioners—and the member states to adopt ambitious guidance, recommending an expansion of disability-support services. Most importantly, this applies to PA but it extends to peer support and beyond.
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.