SIS event in Rome spurs unique discussion of user experiences among professionals from four European countries and Catalonia
Researchers and practitioners from Belgium, Catalonia, Italy, Netherlands, and Spain discussed their various uses of the Supports Intensity Scale (SIS) tool, at the February 22nd "Support paradigm and Quality of Life" event held in Rome, Italy by disability group, ANFFAS Onlus. Whether a researcher, service provider, or physician, it was clear that SIS evokes passion, given its tremendous potential to transform service systems and the lives of people living with an intellectual disability. Whether it is reporting on patterns of aggregate SIS scores or discussing the importance of SIS training, participants at the ANFFAS conference were eager to share information and create a portal of best practices knowledge for all of Europe to share (See list of presentations at the end of this article).
Two areas that saw much discussion at the event were person-centered planning and resource allocation. The appeal of SIS in these areas appears universal, despite the uniqueness of each country's disability service system. Arguably, outside of the United States and Canada, the most work being done in the areas of individualized planning and resource allocation using SIS is in the Netherlands. The Netherlands also has the maximum number of research projects on SIS (see below). Two key figures involved with SIS work in the Netherlands are Dr. Wil Buntinx at the University of Maastricht and Dr. Jos van Loon of Arduin, a former institution turned into a community service provider.
Arduin has been using the Supports Intensity Scale in an electronic format licensed from AAIDD, publisher of the Scale. At Arduin, the Supports Intensity Scale is now a standard tool used for all individuals served in conjunction with other interview questions, to develop person-centered plans. Click here to read a presentation by Mr. van Loon on how SIS is incorporated into person-centered practices at Arduin. Further, Arduin is working with author Robert Schalock on an innovative project creating a personal outcome scale, which ties in SIS information with overall quality of life goals of the individual. Case managers will hence have a "big picture" view of a person's desired outcomes and such a repository will serve as a valuable planning tool.
On resource allocation, Dr. van Loon is actively engaged in developing funding models based on SIS scores, and he presented data from two research studies at the ANFFAS event. The first study on the development of a formula to translate SIS scores to financial means concludes that it is possible to redistribute the support budget of the entire organization based on scores of an individual. Click here to read Dr. van Loon's presentation on how the formula was developed and examples of his application. In the second study, the scores obtained from SIS assessments of people served by Arduin were compared with the classification of the new Dutch funding system based on seven "care weights", which define functions and the amount of time needed per client for living, daily activities, and treatment. Click here to read more.
Research studies and pilots programs are critical to the understanding of SIS, and in the Netherlands, Dr. Buntinx at the University of Maastricht has headed several research projects in collaboration with university faculty and service agencies. Dr. Buntinx, a long-standing AAIDD member and also the translator of the Supports Intensity Scale in Dutch, explains that most of these studies will be published shortly as research reports in Dutch. Plans are underway to publish them in English as well. The studies include: (1) Psychometric properties of the SIS in a sample of Dutch persons with intellectual disability; (2) Relationship between SIS scores and budget allocation in a Dutch sample of persons with intellectual disability; (3) Application of the Supports Intensity Scale in individual supports planning and budget allocation control with a Dutch community services provider; (4) Costs of community living arrangements versus facility-based arrangements in a Dutch residential service; and (5) Standardization study of the SIS in Flanders (Belgium).
A novel idea introduced by Dr. Buntinx in the Netherlands is to include the Supports Intensity Scale into medical education courses to make future physicians aware of the supports paradigm and its working in the context of SIS.
Across the border in Flemish-speaking Belgium, Dr. Gert van Hoove at the University of Ghent acknowledges that his country has a long way to go in terms of moving towards supports-oriented planning and services. "SIS is like a UFO in Belgium, where there are 8 types of special schools, budgets are calculated to get 'care packages' and not supports, and where there are a lot of residential facilities," says Mr. van Hoove. However, he acknowledges that things are changing. "SIS only makes sense with person-centered planning,"admits Mr. van Hoove, who is working on many collaborative projects on quality outcomes with Dr. van Loon and SIS author, Robert L. Schalock, to build momentum for the Scale in Belgium. Dr. van Hoove also brought up an interesting question: Can we rely on translated tools as much as on original Scales?
Along with colleague, Dr. Claudia Claes and author Robert Schalock, Dr. van Hoove has completed two studies including one on the reliability of client versus staff judgments on the SIS and a second one on the evaluation of the construct validity of SIS. Due to increasing consumer-driven approaches towards services, the first study looked at how service staff scores individuals on a SIS assessment as compared to the individual with the disability. The study concluded that while there was an acceptable level of inter-respondent reliability between staff and the individual, there was a systematic higher estimation of support scores by staff. The second study examined the relationship between SIS and Vineland AB scores. Since the construct of support needs is different from adaptive behavior, the study looked for a negative correlation between SIS and Vineland AB scores and indeed found one.
Italy is also headed into the person-centered planning phase with SIS. The day before the February 22 event, case managers from across Italy who administered SIS as part of the standardization process, took part in a half-day workshop on relating person-centered planning to SIS scores. Thanks to previous training and this workshop, Dr. Luigi Croce says, "Professionals show a deeper knowledge of constructs such as 'need', 'need of support', 'individual functioning', 'quality of life', at a cultural and technical level. Integration in planning is useful when we have to define priorities in quality of life objectives and coordinates functioning to supports." To learn more about the SIS implementation plans in Italy, click here.
Apart from the obvious benefits of SIS, challenges faced in the administration of the Scale were also raised. While representatives from the five countries present felt some changes were required to the SIS items, some themes were common, as summarized by Dr. Climent Giné of the University of Blanquerna in Catalonia. Dr. Giné noted that people with mild intellectual disability feel embarrassed with questions about actions they can handle with adequate competency. Further, families of people with intellectual disability feel embarrassed about questions on aspects of their sons and daughters that they will not assume in the future. Some of the items on SIS, it was felt, had to be changed to accommodate European values and this was a theme heard not just in Europe, but also in countries such as Israel and Hong Kong. Lastly, Dr. Giné echoed the thoughts of several participants that training was critical to ensure proper administration of the Supports Intensity Scale. "Interviewers need to agree with the general the criteria of score (type of support, time, and frequency) due to the diversity of the descriptors of items." His colleague, Dr. Luigi Croce, also explains, "Training has been a very important and strong effort to prepare the interviewers to administer SIS and collect data in Italy. " I am sure that training had a lot to do with the strong inter-rater reliability of the Italian SIS."
The ANFFAS conference also highlighted innovative work being done by Fondazione Sospiro in Northern Italy, implementing the AAIDD supports paradigm in general. A combination of the AAIDD supports-based definition of intellectual disability and the nine quality of life domains specified by Robert L. Schalock, was used to restructure Fondazione Sospiro and reorient this residential facility for 408 adults to a supports-based management system. With a modest start in 2006, Dr. Mauro Leoni of Sospiro, also, the co-translator of the Supports Intensity Scale in Italian, reported that the results have been dramatic. These include significant reduction in drugs administration; drastic decline in physical restraint for challenging behaviors; a quick drop of sedative intervention for acute behavioral problems; decrease of emergency medical interventions; and preventive care vs. emergency care. Sospiro is now looking into the use of SIS for service planning.
Looking ahead, participants acknowledged the need to analyze SIS scores and look for trends and patterns that can be incorporated into broad-based implementation efforts. Dr. van Hoove called for people to think outside the box with research, asking people to consider doing research on SIS and employment situations. Training of parents was also recognized as an important part of the work. Dr. Buntinx called for using SIS into organizational strategic planning efforts. Of course, in Italy, SIS is now a minimum quality requisite of ANFFAS for every individual served by its offices across Italy, and several other initiatives are being considered in the area of providing continuing education courses on SIS, incorporating SIS into the ICF system, and collaborating with national disability organizations to foster a wider use of the Scale. As Dr. Croce points out, "Thanks to this initial meeting, key disability professionals and researchers from different European countries now have a chance to collaborate and plan for the further development of a Support model for people with intellectual disabilities."
Stay tuned for further information on international implemental efforts with SIS, in the upcoming AAIDD SIS White Paper series to be posted on this website. If you have questions for any of the participants, please email firstname.lastname@example.org and we will direct your query to the appropriate person.
LIST OF PRESENTATIONS
All these presentations are available for downloading at the ANFFAS Onlus website at http://www.anffas.net/Page.asp/id=409.
Origins & Meanings of the Supports Intensity Scale (SIS) and the AAIDD 10th ed. Model in a Quality of Life Framework
Dr. James R. Thompson
Illinois State University
Creating a Supports Intensity Scale for Children
Dr. James R. Thompson
Illinois State University
Items for the development of an individual supports: The use of SIS data / plan
Dr. J.H.M. van Loon
Arduin/Department of Special Education University of Ghent
Resource allocation based on Supports: Two studies with the Supports Intensity Scale
Dr. J.H.M. van Loon
Arduin/Department of Special Education University of Ghent
Evaluating the Inter-Respondent (consumer vs. staff) reliability and Construct Validity (SIS vs Vineland) of the SIS on a Dutch Sample Claudia Claes, MSc; Dr. Geert Van Hove; Dr. Jos van Loon; and Dr. Robert Schalock
The Supports Intensity Scale as a « non identified » object in care environments. The case of the Flemish speaking part of Belgium and the Netherlands
Dr. Gert van Hoove
University of Ghent
The Catalan Version of the Supports Intensity Scale (SIS): Translation and Standardization Process
Dr. Climent Giné and Dr. Francesc Salvador
Faculty of Psychology
Ciències de l'Educació i de l'Esport Blanquerna Universitat Ramon Llull
AAIDD and the Supports Intensity Scale Around the World
Editor and Communications Manager
Quality of Life paradigm applied: AAIDD and SIS experience at Fondazione Sospiro
Dr. Mauro Leoni
The Supports Intensity Scale
Dr. W. Buntinx
Buntinx Training and Evaluation/University of Maastricht
SIS: Adaption to the Spanish Context
Dr. Miguel Angel Verdugo
University of Salamanca
Final SIS standardization study of SIS in Italy