Researchers performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54–89 years, with mild to moderate intellectual disabilities (IQ <70) and low social–emotional development levels. They combined participant observations and qualitative interviews.
Freedom of choice depends on a person’s level of independence
It found that people with a learning disability and support staff have different levels of control over the content and extent of the choices to be made.
When asked which choices they make, many residents indicated they are allowed to choose (almost) everything themselves. When asked for examples, residents referred to everyday choices; for instance choosing which clothes to wear and whether or not to take a shower. According to a resident, freedom of choice depends on a person’s level of independency.
It found that residents experienced less autonomy with regard to health issues and finances.
The reasons for limiting residents’ autonomy differ within the support staff who stated that residents’ level of autonomy depends on residents’ characteristics, needs, preferences, the attitude of support staff and the rules of the care institution.
Ethical importance of autonomy
The researchers said that from a legal and ethical perspective, there is a strong justification to promote and facilitate the autonomy of people with an intellectual disability as much as possible.
Article 12 of the UN Convention on the Rights of Persons with Disabilities and the Law on Care and Coercion states that a client should be able to decide for himself what he wants and get the support he needs to make this happen.
However, although the study shows that people with intellectual disabilities are mainly enabled to make simple daily choices autonomously, it can therefore be extra difficult for this target group to make important decisions considering their care. This included end-of-life decisions.
The researchers concluded: “This study shows that the level of autonomy with which people with intellectual disabilities can participate in daily decision-making processes is limited.
“Support staff is mindful of the importance of preserving residents’ autonomy, but in practice, it is limited to a few areas of life. For follow-up research, we should explore how best to support people with intellectual disabilities to make their own choices throughout their lives so that they are also able to make important decisions about healthcare.
“Furthermore, it is important to get insight into choice making processes for people with different degrees of intellectual disabilities in different settings.”