Italy unveils newly-standardized Supports Intensity Scale in Rome
On February 22, 2008, in Rome, Italy, disability group ANFFAS Onlus, revealed the results of a 2-year effort to adapt the Supports Intensity Scale (SIS) for potential use with the 800,000 people with intellectual disability across Italy. This means that Italy now not only has a native translation of SIS, but it also has its own set of national norms from over 1,000 SIS assessments to plan services and supports of people with intellectual disabilities. The SIS standardization project was financed by the Ministry of Social Solidarity and Law 383/2000 mandated that the Scale be implemented across all ANFFAS centers in Italy.
Titled, "Support paradigm and Quality of Life: Results of the Italian Research Project on the 10th edition of the AAIDD model and the Supports Intensity Scale", the event drew attendance from around 200 case managers and social workers from ANFFAS Onlus offices across Italy serving over 8,000 individuals. Each individual attending actually participated in administering SIS during the standardization process. In addition, the speaker line-up included representatives from Italian NGOs as well as government officials as the country gears up to launch various efforts in research, practice, and training over the next several months. The event also sparked a unique meeting of researchers and clinicians from universities, hospitals, and service agencies in Belgium, Catalonia, the Netherlands, and Spain, invited to discuss individual experiences implementing SIS across Europe, and share best-practice efforts and collaborations. See article titled "SIS event in Rome spurs unique discussion of user experiences among professionals from five European countries" for more information.
February 22nd opened with a keynote address by SIS author, Dr. James Thompson, on the AAIDD definition system and the Supports Intensity Scale, and its meanings in a quality of life framework. Dr. Thompson, who led a group of 10 disability experts to develop the English SIS, spoke about the origins of SIS and the need for this progressive planning tool as the world moved beyond a 'deficits-based model' of disability. The SIS ties in with a supports-oriented approach to a disability, spelled out first in the 9th edition of the AAIDD Definition Manual, wherein disability is viewed as a condition that can be enhanced with the provision of appropriate supports. Dr. Thompson used the case studies in the SIS User's Manual as the basis to tie in supports-oriented planning efforts with scores gleaned from a SIS assessment.
Following Dr. Thompson was a presentation on the findings from the Italian standardization project by Prof. Lucio Cottini and Daniele Fedeli from the University of Udine. The SIS Italian standardization study confirms the strong reliability and validity of SIS. "Particularly, it has been very important to confirm the fact that there is no significant correlation between need of support and age, even in our Italian sample," says AAIDD member, physician, and co-translator of SIS into Italian, Dr. Luigi Croce, talking about highlights of the study. Dr. Croce played a critical role in bringing SIS to Italy. Another highlight is the different variance (minto max extension) in the SIS composite index, which is lower in the Italian version than in the American version. This could be a result of the influence of sample characteristics and socio-cultural factors, explains Dr. Croce. The standardization study also revealed that training is a critical component in preparing the interviewers to administer the Supports Intensity Scale and collect data properly, echoing the findings of a recent study by the English SIS authors. "I am sure that training had a lot to do with the inter-rater reliability of the Italian SIS," says Dr. Croce. Throughout the day, researchers and users from other European countries discussed their work with regards to SIS in areas such as research, service planning, social policy (see below).
The Italian story
The AAIDD collaboration with Italy began several years ago resulting in Italian language translations of key AAIDD publications, including an Italian version of the American Journal on Mental Retardation. Simonetta Capobianco, from ANFFAS' Office of Social Policy, explains, "The incentive to work with SIS came from our Technical-Scientific Committee, consisting of 6 nationally-elected officials, who recognized the intrinsic value of such an instrument and suggested its implementation in Italy." Now that the instrument is in use and has drawn participation from over 200 trained professionals, the benefits are many, says Dr. Croce. He explains, "Thanks to the process of adapting the Supports Intensity Scale to the Italian context, several professionals who administered the Scale have new skills, as well as a deeper understanding of critical concepts such as, 'needs', 'support needs', 'individual functioning', and 'quality of life'. This is really unprecedented in Italy, and more importantly, the results will be used to develop a first-ever study of needs of people with intellectual disabilities in Italy."
So what lies ahead for SIS in Italy? As a part of its commitment to supports-oriented services, the Supports Intensity Scale is now a minimum quality pre-requisite of ANFFAS for every individual served by its offices across Italy. Data collected so far, as well as future data will be transcribed into an electronic system for better record keeping and functionality. Further, being a government accredited organization, ANFFAS will start providing continuing education courses on SIS to the general public to encourage more professionals to learn about it. Future efforts will also focus on the integration of SIS into the evaluation procedures of the ICF system, an area that was addressed several times during the meeting. Since the ICF, the prevalent model of defining intellectual disability in Europe, complements the Supports Intensity Scale, the development of a training model that incorporates SIS with ICF definitions is already, explains Dr. Croce. Also, in order to move SIS beyond the ANFFAS purview, the group is working with a national disability group called Feberazione Italiana per il superamento dell'handicap or FISH, to foster widespread use of the Scale.
Certainly, the SIS is not a panacea. At the ANFFAS event, several concerns were raised by Mr. Pieto Barbieri, president of FISH, who pointed out several limitations in the Italian disability service system. One in every 8 people with intellectual disability in Europe are institutionalized and with the modus operandi in Italy being one of social compensation in an 'à posteriori' environment, it seems like "Social rights are granted only by medical certification in Italy." Roberto Speziale, president of ANFFAS also pointed out, "In Italy, there are still large state facilities. Most support is being provided by families."
However, in general, professionals are hopeful with the introduction of the Supports Intensity Scale. Dr. Croce points out that with a supports-oriented model and framework in place, skilled personnel now attuned to the supports paradigm, and a government that is interested and supporting the move to a supports paradigm, the future looks promising. To see a listing of all the presentations at the event, visit http://www.anffas.net/Page.asp/id=409.
ANFFAS Onlus is a non-profit organization of service agencies, families, and professionals working with people with intellectual disabilities. To learn more about ANFFAS, visit http://www.anffas.net.