Personal ombudsmen for supported decision-making in Sweden

Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) ensures that people cannot lose legal capacity simply because of disability. People may require support to exercise that capacity, and safeguards will be needed to prevent the abuse of such support. The CRPD obliges governments to take appropriate and effective measures so that people have the support they need to exercise their legal capacity.

Supported decision-making can take many forms. It involves people with disabilities having supporters, or advocates, who know them, can understand and interpret their choices and desires, and can communicate these choices and desires to others. Forms of supported decision-making may include support networks, personal "ombudspeople", community services, peer support, personal assistants and good advanced planning (9).

Satisfying these requirements is not always straightforward. People in institutions may be denied this support. There may be no relevant agencies. An individual may not be able to identify a trusted person. Also considerable effort and financial investment may be needed. However existing models of substitute decision-making or guardianship are also costly and complicated. Supported decision-making should thus be seen as a redistribution of existing resources, not as an additional expense (10). Examples of decision-making support models can be found in Canada and Sweden. The Personal Ombud (PO) programme in Skåne, the southernmost province of Sweden, supports people with psychosocial disabilities, helping them assert their legal rights and make major decisions about their lives (11).

PO-Skåne employs individuals with a professional degree - such as law or social work - who have the ability and interest to interact well with people with psychosocial disabilities. They do not work from an office but go out to meet the people they work with, wherever they are based. Only a verbal agreement is required to set up the service, which is confidential. This allows a relationship of trust to be established, even with individuals who have had experience of abuse by authorities claiming to help.

Once the PO relationship has been set up by agreement, the PO can act only on specific requests - for instance, to help the person obtain government benefits. Often, the greatest need is to talk about life. The PO may also be asked to help resolve long-standing problems, such as creating a better relationship with the family.

The PO programme has helped many people to manage their lives. The initial costs can be high, as people assert their rights and make full use of the services. But the costs fall as situations are resolved and the need for support declines.