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Purpose: This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation.

Methods: A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool.

Results: One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented.

Conclusions: A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group.

• Implications for rehabilitation

• There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities.

• For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan.

• The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual’s functioning in their environment is not omitted in documentation.

Background

Participation is a central aspect of quality of life, and it is indicative of high‐quality outcomes for people with intellectual disabilities. However, participation is difficult to achieve for adults with profound intellectual and multiple disabilities.

Aim

To describe staff members’ perceptions of what participation means for adults with profound intellectual and multiple disabilities.

Method

Using a phenomenographic approach, 27 interviews were analysed resulting in variations in the conditions for participation.

Results

The interviews revealed conditions for participation at individual, staff and organisational levels.

Conclusion

Participation appears to be an un‐reflected phenomenon, and several conditions must be met to achieve it. The conditions are experienced being fundamental for adults within the target group to achieve any kind of participation. The staff members and managers’ perceptions of participation as conditional can make it more difficult for adults within the target group to achieve the Swedish disability policy goal of participation.

Participation is the goal of Swedish disability policy, but it is difficult to achieve for adults with profound intellectual (and multiple) disabilities (PI(M)D). Since these adults are dependent on others in every aspect of their lives, others control their ability to participate in everyday life decisions. This study used observations, analyzed with Shier’s ladder of participation, to elucidate and describe participation in daily life for adults with PI(M)D living in a group home. The results showed that the adults often reached the first three levels of Shier’s ladder, one adult reached the fourth level once, and no one reached the fifth level. Participation on a higher level, therefore, seems hard to reach for adults. Staff members’ attitudes toward the adults’ capability can also be a barrier to participation. Applying Shier’s ladder of participation can provide valuable information that might lead to increased participation in daily life for adults with PI(M)D.