Independent living for persons with disability

Up to a few decades ago, the only option for most persons with disabilities was to be housed in institutions run by the State or the Church. Such institutions were once seen as the best way of taking care of and treating persons with additional support needs, including care, food, and shelter.

The Commission for the Rights of Persons with Disability (CRPD), in a recent conference, raised awareness of the challenges that persons with disabilities living in institutions face. 

There are about 350 people with disabilities living in institutions, with over 100 on the waiting lists. Still, the number of persons needing extra support because of their disabilities is probably much higher as the international average of persons with disabilities is estimated at eight to 10 per cent of the population.

Various organisations, including the Council of Europe, the European Agency for Human Rights, and the European Disability Forum, are constantly militating to nudge governments to adopt policies that lead to the deinstitutionalisation of persons with disabilities. Progress is slow, and more needs to be done to give persons with disability more independence.

The European Expert Group for the Transition from Institutional to Community-based Care defines institutions as, “any residential care where residents are isolated from the broader community and/or compelled to live together; residents do not have sufficient control over their lives and over decisions which affect them; and the requirements of the organisation itself tend to take precedence over the residents’ individual needs”.

While some persons with disabilities are happy living in care homes, others yearn for more independence to feel that they are a part of the broader community. 

Persons with disabilities are among the most vulnerable individuals in our society. They are often deprived of their liberty for extended periods and sometimes even for a lifetime. Various international studies confirm that institutional care provides poorer outcomes in terms of quality of life. 

The way ahead is to promote alternative policies to institutionalisation. The transition to community-based services must include supportive living arrangements and an individualised approach to providing preparedness for those growing up in institutions. 

We must move away from institutionalising persons with disabilities as these persons have limited capacity and possibilities of taking a full part in society because of the physical separation from their families and the rest of the community they live in. 

The transition to independent living requires a long-term strategy involving all stakeholders. 

For institutionalised persons to be reintegrated into society successfully, there must be a comprehensive social services charter and individualised support in deinstitutionalisation. This applies even more to children with disabilities, where the process must be child-centred.  

Persons with disabilities have different needs. This reality calls for a holistic approach among all relevant stakeholders to ensure that persons with disabilities are guaranteed their right to full and effective participation in the life of the community. 

If the process of deinstitutionalisation is not managed correctly and without due consideration of the needs of each individual and their family, it will lead to more harm being inflicted on vulnerable persons.

The CPRD did well to bring to the attention of the authorities and the public the challenges that institutionalised persons with disabilities face. May this initiative lead to a comprehensive road map that will lead to persons with disabilities leading more independent lives.