Article 19 CRPD: independent living and community inclusion

Article 19 of the CRPD recognises the equal right of all persons with disabilities to live in the community, with choices equal to others. It sets three obligations: the opportunity to choose place of residence and with whom to live, access to the in-home, residential and community support services needed to prevent isolation, and community services and facilities available to the general population being available on an equal basis to persons with disabilities.

The third one is the one people skip. It means that independent living is not only about care packages. If the buses are inaccessible, the housing stock has steps and the town hall cannot be entered, the support package is being delivered into a community the person cannot actually use.

Independent living is not living alone

The phrase misleads in English. Independent living does not mean doing everything without help, and it does not mean living by yourself. It means having control over your own life: what happens in your day, who provides your support, when you get up, whether you can have someone stay.

A person who needs assistance twenty-four hours a day is living independently if they direct that assistance. A person who needs two hours a week is not, if someone else sets the schedule and they cannot choose the assistant.

What counts as an institution

General Comment No. 5, adopted in 2017, is the interpretive text and its most quoted passage concerns size. Institutionalisation is not defined by how many people live in a building. The Committee lists the markers: compulsory sharing of assistants with others and no or limited influence over who provides support; isolation and segregation from independent life in the community; lack of control over day-to-day decisions; no choice with whom to live; rigidity of routine irrespective of personal will; identical activities in the same place for a group under a certain authority; a paternalistic approach to service provision; supervision of living arrangements; a disproportionate number of persons with disabilities in the same environment.

A four-bed group home with fixed mealtimes, a staff rota nobody chose and a rule about visitors meets most of that list. This is the reason the Committee resists counting bed numbers as a measure of progress, and it is the same argument that appears in the discussion of deinstitutionalisation of children.

Personal assistance

The General Comment treats personal assistance as a distinct form of support with four defining features, and the distinction matters because many services described as personal assistance are not.

Funding is individualised, allocated to the person and based on their own criteria. The service remains under the control of the disabled person, who can either contract it or employ assistants directly. It is a one-to-one relationship. And the person recruits, trains, supervises and, where they wish, dismisses their assistants.

A pooled staff team assigned by an agency according to its rota does not meet the definition, whatever it is called in the contract. Where personal budgets exist in European systems, the recurring gap is between a budget the person nominally holds and a provider list they cannot depart from.

The housing problem nobody funds

Support without accessible, affordable housing produces waiting lists rather than independent living, and this is the most common practical failure in European deinstitutionalisation programmes.

Where community services are built without the housing supply, people move from an institution into a shortage. Where housing is built without support, people are placed in accessible flats and left isolated, which produces readmission and the argument that community living does not work. Both patterns are well documented, and both are avoidable by sequencing.

Where it connects

Article 19 depends on Article 12. A person under a guardianship order who cannot sign a tenancy or hire an assistant cannot exercise a choice of residence, however well funded the service is. The two articles are usually reformed together for that reason, and where only one is reformed the other becomes the bottleneck.