There is a wide agreement on the convenience of people with intellectual disabilities to live as independent as possible (United Nations, 2006). In addition, being independent is considered a very important life goal for them (Kuijken et al. 2016) and linked directly with a greater quality of life. The ability to make choices and being independent is also crucial for older people with intellectual disability (Strnadová, 2018).
In the same line of thought, the American Association on Intellectual and Developmental Disabilities considers as utmost importance the independence of people with intellectual disabilities, strongly stating the importance of focusing on individual´s functionality because it leads to a better adaptive behaviour which is defined as "the sum of perceptual, social, and practical skills required to enable an individual to function in daily life" (Dimitriadou and Kartasidou, 2017).
Rose: "… the biggest thing, I think, it would be being able to live in your own home. That would be the biggest thing. (…) And having a sense of dignity and independence." (Strnadová, 2018)
Independence could be understood as the "ability to take action to manage one´s affaires and provide for oneself, thereby solely relying on one´s efforts, resources, judgment and abilities, without requiring help or support from others" (Sandjojo et al. 2018b). Two other concepts are very related to independence: independent living and self-management. Independent living is defined as "the control over one's life based on the choice of acceptable options that minimize reliance on others in making decisions and in performing everyday activities (Rauch et al. 2010). It might include activities such as the accomplishment of several social roles or the participation in the community on daily bases (Frieden et al. 1979). On the other hand, self-management is defined as the set of actions that people with intellectual disabilities might undertake to achieve self-selected outcomes (Sandjojo et al. 2018a).
According the model of QoL (Buntix and Schalock, 2010), independence is formed by two domains:
- Personal development (Adaptive behavior, personal skills and education status); and
- Self-determination (Autonomy, decision/choices, personal goals and control)
Buntinx, Wil & Schalock, Robert. (2010). Models of Disability, Quality of Life, and Individualized Supports: Implications for Professional Practice in Intellectual Disability. Journal of Policy and Practice in Intellectual Disabilities. 7. 283 - 294. 10.1111/j.1741-1130.2010.00278.x.
Dimitriadou, Ioanna & Kartasidou, Lefkothea. (2017). The Role of Support Systems for the Independence of Individuals with Intellectual Disabilities. The International Journal of Pedagogy and Curriculum. 24. 39-48. 10.18848/2327-7963/CGP/v24i03/39-48.
Frieden L, Richards L, Cole .I, Bailey D: ILRU Source Book. Houston: Independem Living Research Ulilizalion Project, 1979
Kuijken N. M. J., Naaldenberg J., Nijhuis-van der Sanden M. W. & Van Schrojenstein-Lantman de Valk H. M. J. (2016) Healthy living according to adults with intellectual disabilities: towards tailoring health promotion initiatives. Journal of Intellectual Disability Research 60, 228–41.
Rauch, Alexandra & Bickenbach, Jerome & Reinhardt, Jan & Geyh, Szilvia & Stucki, Prof. Dr. med. Gerold. (2010). The Utility of the ICF to Identify and Evaluate Problems and Needs in Participation in Spinal Cord Injury Rehabilitation. Topics in Spinal Cord Injury Rehabilitation. 15. 72-86. 10.1310/sci1504-072.
Sandjojo, J. & Gebhardt, Winifred & Zedlitz, Aglaia & Hoekman, J. & Dusseldorp, Elise & Haan, J. & Evers, A.. (2018). Development of the Leiden Independence Questionnaire for Support Staff: a measure of staff behaviour regarding promoting independence of people with intellectual disabilities: Leiden Independence Questionnaire for Support Staff. Journal of Intellectual Disability Research. 63. 10.1111/jir.12574.
Sandjojo J., Zedlitz A. M. E. E., Gebhardt W. A., Hoekman J., Dusseldorp E., den Haan J. A. et al. (2018b) Training staff to promote self-management in people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 31, 840–50.
Strnadová, Iva. (2018). Transitions in the Lives of Older Adults With Intellectual Disabilities: “Having a Sense of Dignity and Independence”. Journal of Policy and Practice in Intellectual Disabilities. 10.1111/jppi.12273.
United Nations (2006) Convention of the rights of persons with persons with disabilities. Available at: https://www. un.org/development/desa/disabilities/convention-on-therights-of-persons-with-disabilities.html