Best practices in quality of life and supported living prompt the adoption of SIS in Italy
An Italian version of the Supports Intensity Scale is now being used with 1,800 people with intellectual disabilities across all regions in Italy through a government-funded project. Assessment data collected from this project will be used to develop national norms specific to people with intellectual disabilities in Italy.
“SIS is what we have been waiting for”, says Dr. Mauro Leoni, member of Editorial Board and Rights manager for Vannini Editrice located in Gussago, Italy. Leoni, along with colleague Dr. Luigi Croce, translated the Supports Intensity Scale into Italian. Leoni explains that in Italy, the Supports Intensity Scale is not merely an assessment instrument, but it is part of a national movement developed by a group of experts and advocates to create best practice standards in quality of life for people living with an intellectual disability. This group, consisting of Roberto Cavagnola, Serafino Corti and Paolo Moderato, in addition to Croce and Leoni, has been working over the past several years with the American Association on Intellectual and Developmental Disabilities (AAIDD) to translate major scientific works published by AAIDD into Italian for use by professionals and families.
When AAIDD published its supports-oriented definition system of intellectual disability in 2002 (Mental Retardation: Definition, Classification and Systems of Supports, 10th edition), the contemporary outlook on this cognitive disability appealed to stakeholders in Italy, explains Leoni. This major work was translated into Italian and implemented across Italy. It only seemed natural then to make the Supports Intensity Scale, a practical outcome of the definition system, available as well to professionals in Italy. The SIS provides a practical tool for professionals to measure supports required by people with intellectual disability to lead a successful life in the community.
However, as enthused as Leoni and his colleagues were about SIS, they had reservations about SIS. He explains, “When SIS was available, we were fascinated by the instrument, but were unsure of how to make it applicable to the Italian context because our service system is very different.” Leoni and his colleagues concluded that the best way to show that an instrument works is to actually use it! The team opted for a modest start with SIS. After several consultations with one of the SIS authors, Robert L. Schalock, a research study was developed, aimed at adapting the Supports Intensity Scale to the Italian context. Working with ANFFAS, a leading association representing around 8,000 families of people with intellectual disabilities in Italy and with funding provided by the Italian Ministry of Social Solidarity, Leoni and his colleagues first translated the Supports Intensity Scale into Italian. Professionals across Italy were then encouraged to use this pilot version while working with people with intellectual disabilities.
Based on the initial feedback, the instrument was mainly modified for cultural differences. For example, cooking, cleaning, and other activities under home living were modified because they have a different pattern in Italy. Also, due to the financial support and interventions provided by the national health system to people with intellectual disabilities in Italy, the employment items in SIS do not carry a similar relevance in Italy. After the instrument itself was modified, the Supports Intensity Scale User’s Manual was translated in April 2007. Finally, the SIS interview form as well as the User’s Manual were made available to a wider audience across Italy in July 2007.
Feedback collected from the initial use of SIS was an enriching experience, says Leoni. The data collected on the initial 1,600 people will be used to produce statistical norms for Section 1 of the SIS interview form, with standard scores computed for each of the 6 activity subscales. At the individual level, the goal in Italy is to use SIS to develop individualized service plans for people with intellectual disabilities. In addition, further studies to assess statistical properties of the Italian edition of SIS have been planned with the help of Schalock and other expert colleagues, and will be implemented in 2008.
Also in the works is a study by a residential service provider, Istituto Ospedaliero di Sospiro in Cremona, on the use of SIS with 400 people with intellectual disabilities to determine staffing and budgeting patterns as well as its impact on program planning and evaluation of clients served. Finally, Leoni anticipates that in February 2008, a national conference held by the Italian Ministry in Rome will examine all the summary statistics from the use of SIS to develop regional systems to guide resource allocation and systems planning efforts using the Supports Intensity Scale in Italy. The European countries involved in SIS implementation efforts, currently, Spain, Cataluña, and the Netherlands, have been invited to this event. The goal, explains Leoni, is to share information on mutual experiences with SIS, and ultimately collaborate toward the achievement of rights for persons with intellectual and developmental disabilities.