Research in Developmental Disabilities 35 (2014) 1144–1151
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Research in Developmental Disabilities
Using the sis to better align the funding of residential services to assessed support needs§ Climent Gine´ a,*, Josep Font b, Joan Gua`rdia-Olmos c, Anna Balcells-Balcells a, Judit Valls d, Maria Carbo´-Carrete´ a a
University Ramon Llull, c/ Cı´ster, 34, 08022 Barcelona, Spain CPT Estel, c/ Jaume I el Conqueridor, 19, 08500 Vic, Spain c University of Barcelona, Ps. de la Vall d’Hebron, 171, 08035 Barcelona, Spain d University of Girona, Campus Montilivi, 17071 Girona, Spain b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 18 October 2013 Received in revised form 30 January 2014 Accepted 31 January 2014 Available online 11 March 2014
Resource allocation in social services has become an issue of the utmost importance, especially in these times in which budgets are tight. The aim of this study is to explore whether the SIS allows for the identification of groups of individuals presenting ID with different needs for support living in residential services in Catalonia, Spain, and if so whether or not a more efficient and fairer system of funding could be considered in comparison with the ICAP. The results show that the six categories of need for support resulting from this study could form the basis for better alignment the funding for those who live in this type of residence according to their assessed support needs. ß 2014 Elsevier Ltd. All rights reserved.
Keywords: Resource allocation Intellectual disabilities Residential services Support needs
1. Introduction Over the last few decades, the standard of living of individuals with intellectual and developmental disabilities (IDD), has seen considerable improvements due to social and economic changes. The progress that has been made in research has led to significant changes in the understanding of these individuals and the way services intended for them are organized and provided (Kober, 2010; Schalock et al., 2012; Van Loon et al., 2013; Go´mez, Verdugo, Arias, Navas, & Schalock, 2013). Acting in their respective spheres, international organizations, professionals, researchers, governmental agencies, and people with IDD and their families have all made critical contributions to the creation of new contexts and opportunities for the full development of these individuals and have helped enhance their quality of life. One of the key elements in the transformation the IDD field is connected to the gradual international adoption of the support paradigm, stemming from the definitions set out by the AAIDD in 1992, 2002 and 2010. This paradigm is an approach to people with IDD that emphasizes their possibilities and what they are able to accomplish with the proper support, rather than focusing on the areas in which they are lacking. According to this perspective, as Van Loon (2009) points out, all people should be viewed in light of the social, political and economic context in which they live, and when adequate support is available, people with IDD, who are so often at risk of
§
The EIS (Escala d’Intensitat de Supports) is Catalonia’s adaptation and standardization of the Supports Intensity Scale (AAIDD, 2004). * Corresponding author. Tel.: +34 932533186. E-mail address: [email protected] (C. Gine´).
0891-4222/$ – see front matter ß 2014 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ridd.2014.01.028
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exclusion, should have access to the resources and opportunities that society can provide so that they are able to realize their dreams and live the kind of life they choose. Therefore, public policies and organization practices should include as a critical and indispensable element a process to determine what patterns of support people with IDD need, and to ensure that they are accessible in all contexts of their lives. Thus, it should come as no surprise that there is a growing interest, especially internationally, in linking the financing of services for people with IDD to the results obtained from an assessment of the support that these individuals may need throughout their lives (Schalock, Thompson, & Tasse´, 2008; Smith & Fortune, 2008; Kimmich et al., 2009; Van Loon, 2009). This interest can be attributed to several factors, including a desire to achieve greater fairness when financing services for different individuals, meaning that resources should be assigned according to the real needs for the support of people with IDD. Another goal is to ensure a more efficient use of resources at a certain level of quality. Additionally, in some countries, a third goal is the creation of a mechanism to allow people and their families to directly purchase whatever services they choose (Smith & Fortune, 2008). But the most important has to do with the progressive adoption of the constructs of quality of life and support paradigm that lead to the redefinition of organizations and the services and supports they provide to persons with intellectual disabilities (Van Loon et al., 2013). Specifically, we refer to the importance of the quality of life-related personal outcomes and their consequences at the micro, meso and macrosystem level. All of this takes place in a context in which, as Kimmich et al. (2009) points out, it is necessary to reconcile an increased demand for services with a decrease in the budget of public agencies as a result of the worldwide economic crisis, whose effects have been especially severe here in our country. This set of circumstances has led to a rethinking of the financing of services for people with IDD in broad terms, so much so that Smith and Fortune (2008) refer to a new ‘‘emerging framework’’ that is characterized by (a) prioritizing the individual and not the program or service when assigning financing, (b) developing financing systems based on the characteristics and needs of the person rather than on the service attending to the person, (c) admitting that if financing fails to meet the individual’s needs, it will be impossible for him or her to make valuable progress, (d) taking into account the cost of the kinds of the support the person receives that are usually not paid for (including facilities for the family, among other things), and (e) accepting that payments to organizations that provide services should cover both the organizations’ structural expenses and costs arising from the different levels of need for support of the beneficiaries. This situation stands in contrast to the lack of studies and initiatives of this sort in Spain, even though the reality on the ground is very similar to that in other countries; both the associations, generally responsible for providing services, and public authorities who assume most of the cost, share the concern for funding more efficient, equitable and better adapted to the support profile of people with IDD. Therefore, the time has come to carry out research projects, such as the one presented by this article. The study reported in this article was conducted along the lines of those conducted in other countries that serve to match resources with the real needs for support among people with IDD in Catalonia, with a special focus on new instruments of measurement, such as the SIS (Thompson et al., 2004) and its adaptation and standardization to Catalonia: EIS (Gine´ et al., 2007). 2. The importance of the SIS for resource allocation As Kimmich et al. (2009) point out, the key to attaining fairer and more efficient services for people with IDD is the gathering of reliable and accurate information on individuals’ needs for support. Unlike other measurement tools in the field of IDD that either focus more on exploring disorders and difficulties or on measuring adaptive skills (ICAP), the SIS is an instrument with an enormous amount of potential (Kimmich et al., 2009) in that it attempts to identify the supports a person needs in order to fully take part in the activities of everyday life in different environments. Anyway it is worth remembering that ICAP has been widely used since the 90s in order to establish an individual’s eligibility for the different services according to the rate of adaptive behavior and behavioral problems and, therefore, to guide funding decisions (Smith & Fortune, 2006; MacLean, Heath, & Carter, 2012). Since the SIS appeared, several studies have been conducted comparing the results between the two instruments that allow to conclude that ICAP and SIS measure different constructs and also respond to different conceptual models; while the ICAP is based on a person’s independent functioning level (deficit approach) (MacLean et al., 2012) and aims at assessing adaptive behavior, the SIS has been built from the support paradigm and measures the intensity of support that a person needs to full participation in the community (Smith & Fortune, 2006; Whemeyer et al., 2009). In this sense, according to Verdugo et al. (2010), the correlation coefficients obtained between SIS and ICAP scores ranged from .498 and .589; this significant negative correlation coefficients are consistent with other psychometric studies such as the one carried out by Whemeyer et al. (2009) who found a correlation between Total Support Needs Index scores and the ICAP Service Scores of .49. Moreover Kimmich et al. (2009) argue that the ICAP comparing to the SIS shows the validity and flexibility of the SIS. In the White Paper on SIS (Schalock et al., 2008), there is a description of two new possible ways of using the SIS: (a) the use of the scale to assign resources and (b) its use in the planning of individual support. The assignment of resources using the SIS is sure to give rise to several questions, some of which have been the focus of research over the last few years (Agosta et al., 2009). One of the most critical issue is to what extent is the SIS a good instrument of measure for use in assessing the support profile that a person with IDD may need throughout his or her adult life, and in broader terms, is it more sensitive to these needs for support than other forms of measurement? Whemeyer et al. (2009) recently carried out a study to explore the efficacy of the SIS for the measurement of needs for the support of individuals with IDD. According to the authors of the study, their results clearly show the SIS to be an effective instrument for the measurement of varying degrees of need for
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support among people with IDD, as well as for use as a contributing factor in decisions on the assignment of resources. In addition, they state that the SIS measures a concept different from that measured by personal competence assessment tools in general and traditional assessments of adaptive skills (ICAP) in particular. All of this suggests that, as indicated by Kimmich et al. (2009), the SIS displays a greater degree of face validity than the ICAP and other traditional instruments for the measurement of needs for support. Other issues are also currently the subject of research (Agosta et al., 2009), which is sure to help pave the way for an effective use of the SIS in making decisions about resource assignment. For example, which of the factors measured by the SIS best predict the need for support? All financing decisions can be made based on the support profile? What can be done to fine tune the relationship between the assessment of a person’s needs for support and the corresponding available budget? How can we ensure that the model considers people with exceptional degrees in need for support, those who are thus likely to generate more expenses, in order to make sure that everyone receives what they need, and neither more nor less? And finally, how often do we need to reassess the need for support? What all of these studies seem to make clear is that the assignment of resources to people with IDD using the support profile obtained from the SIS represents a decisive step toward greater efficiency and fairness, and that it has important advantages both for the individuals and for institutions and public agencies. This is why, as Kimmich et al. (2009) point out, public agencies are in need of a road map to point them in the right direction, a map that will be drawn by the research we are able to generate, among other sources. 3. Current financing of residential services in Catalonia In 2006, the Catalan government broke new ground in Spain by establishing that in the social service field, as was already the practice in other countries, financing should be determined by the need for support as assessed by the ICAP; it is important to say that in those days the SIS was not known nor was validated in Spain. The truth is that currently there is no data available on the efficacy and efficiency of the measure (ICAP). Specifically, no study has addressed whether or not the assignment of resources responds to the individual’s needs for support or whether or not the instrument used to assess support is appropriate. Therefore it is absolutely necessary to overcome this gap in order to align resources with the real needs of people with DID support in Catalonia. Nowadays in Catalonia Decree 318/2006 on Residential Accommodation for people with disabilities regulates the support provided by residential accommodation services for these individuals, and it also sets out the conditions for the provision of these services within the regulatory framework of social services. The residential accommodation services may be used by anyone residing in Catalonia with an officially recognized degree of disability, whether physical or intellectual, of 33% or more and which necessitates the provision of services in a home. In the words of this decree, ‘‘Residential Accommodation Services devoted to individuals with physical or intellectual disabilities are provided in a manner tailored to the individual and with varying degrees of intensity of support in accordance with the needs of the person so as to promote his or her independence within the social environment.’’ The table below shows the six levels of intensity of support in these homes, along with their corresponding types of financing (Table 1). It should be noted that while the model outlined in this decree represents an important step forward in terms of resource assignment based on need for support, the categories it establishes and their corresponding expenditures do not have the empirical backing they need in order to meet the criteria of fairness and efficiency. 4. Objective of the study The objectives of this study are (1) to fill the gap of research in our country linking funding services for people with intellectual disabilities to the results obtained from an assessment of the support needs, (2) to explore whether the EIS, the adaptation and standardization of the Supports Intensity Scale (SIS) to the population of Catalonia, allows for the identification of groups of individuals with IDD with different needs for support and (3) if so, whether or not an efficient and fair system of financing could be considered in accordance with the needs of these individuals with IDD. 5. Methodology 5.1. Participants The criteria of inclusion and exclusion that were applied in order to select the sample group were as follows: (a) participants were required to be people with IDD, (b) to use a residential accommodation service (according to the national regulations only people older than 18 years have access to the residential facilities) and (c) to represent varying degrees of disability according with the official statement of the degree of disability issued by the Government and their ICAP scores (intermittent, limited, limited with special care, extensive, extensive with special care, generalized). The degree of disability is defined according to three levels of severity (33–66%, 65–74%, and 75). The final sample group was made up of a total of 134 people from four different homes throughout Catalonia. Of the total number of participants, 41% were women and 59% were men, and the average age was 45.94 years old. As to the location of
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Table 1 Relationship between type of support, ICAP level and financing assigned. Type of support
Description
ICAP level
Financing
1. Intermittent support
Provided sporadically or occasionally, when needed Provided occasionally but regularly for a limited period of time and at regular intervals, in certain aspects of the life of the person
Levels 7-8-9 (limited care to the individual, and/or periodic monitoring) Levels 5–6 (Regular care of the person, and/or frequent supervision)
32.20 s/day
2. Limited support
3. Intermittent or limited support requiring special care due to mental health, behavioral problems, or aging 4. Extensive support
5. Extensive support with special care due to mental health, behavior problems, or aging 6. Generalized support
65.32 s/day
Levels 5-6-7-8
69.19 s/day
Provided continuously, with no time limit and with a regular or high degree of frequency, and which affects certain situations in the life of the person with the disability, (home, work school, community life. . .) In some situations, the person is dependent on others This support is considered only in terms of financing, but is not discussed in the regulations.
Levels 3–4 (intense care for the person, and/or constant supervision)
69.19 s/day
We believe that the ICAP score of this support would be level 3–4
76.49 s/day
Provided continuously, possibly throughout the life of the person with the disability, with a high degree of frequency, affecting all or nearly all situations in the life of the person. The person is dependent on others.
Levels 1–2 (total care for the person, and/or complete supervision)
71.29 s/day
the homes, 40.3% lived in a semi-urban setting, while 59.7% resided in an urban environment. In terms of ICAP levels of support, 8.2% fell into the category of intermittent, 26.9% limited, 9.7% limited with special care, 31.8% extensive, 15.7% extensive with special care and 1.5% generalized. 5.2. Measurement tools The measurement tools used to carry out this study were the adaptation and translation of the SIS for the Catalan population with IDD, known as the Escala d’Intensitat del Suports (EIS) (Gine´ et al., 2007; Gine´, 2008), and the Inventory for Client and Agency Planning (ICAP) (Bruininks, Hill, Weatherman, & Woodcock, 1986; Montero, 1999). The SIS includes 86 items divided into three sections. Section 1 gathers information on the needs of the individual in terms of the frequency, duration and type of help that he or she requires. This section contains six sub-scales that account for the most important areas of support and allow for an identification of the Support Needs Index, with scores that can range from 55 to 145. Section 2 is made up of the Supplementary Scale of Protection and Defense, and it covers the types of activities the individual carries out related to his or her capability of self-defense and protection. Just as in Section 1, each activity is assessed in terms of the frequency, time and type of support. The score for this section is calculated separately from that of Section 1 and is not standardized. It can range from 0 to 94. Section 3, the Scale of Medical Support and Exceptional Behavioral Needs, describes the additional support the individual may need as a supplement to those covered in Section 1, due to his or her medical or behavioral conditions. This section is made up of two subsections: the supports stemming from medical conditions (Part A) and the supports stemming from behavioral conditions (Part B). The score for this section is also calculated independently of that of Section 1, and is also nonstandardized. Scores for part A can range from 0 to 48, while those for part B can range from 0 to 39. It should be noted that for the purposes of this study, only the scores from Section 1 of the SIS were taken into account. With regard to psychometric properties, both the original version of the SIS and its adaptation for Catalonia display a high degree of reliability (a = 0.99 in the case of the American version, and a = 0.97 for the Catalan scale) and an acceptable level of content and criterion validity (Thompson et al., 2004; Gine´ et al., 2007; Gine´, 2008). The Spanish version of ICAP is a standardized tool whose objective is to assess the degree of adaptive behavior of individuals with disabilities. It is made up of 77 items, divided into four areas: social and communication skills, personal living skills, community living skills and motor skills. Like the SIS, this tool yields a result in the form of a Level of Service Index that combines scores for adaptive behavior and behavioral problems and offers an estimate of the intensity, supervision and instruction required by the individual to function effectively in his or her context. Each of the items on this scale is scored according to the degree of help the person needs in order to carry out the activity. A score of 1 means that the person requires complete supervision or care, while a 9 means that he or she needs little or no help with daily life. The psychometric properties of the Spanish version of this measurement tool have been very solid, both
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in terms of reliability (a = 0.85, test-retest reliability and consistency among the scores given by independent testers) and content and construct validity (Montero, 1999). 5.3. Procedure In order to gather a sample that corresponded to our objectives, we made a request for the collaboration of several residential accommodation services in Catalonia. Once the centers had agreed to participate, they were asked for information on their users, specifically the SIS and ICAP results for each of them. Because the Catalan government assigns resources to centers according to the ICAP, they all had the data from this scale available. However, only one of the centers had SIS data. In order to obtain this data, two parallel actions were undertaken: (1) the research team trained the professionals at these centers so that they were able to administer the measurement test correctly, and (2) some researchers went to the centers in order to administer the test so as to lend support to the professionals at the centers. The managers of the homes accepted the proposal, and the SIS was administered over a period of four months, following the instructions in the Manual. Once the SIS had been administered and the ICAP scores gathered, the next step was the statistical treatment of the data using SPSS software, version 19.0, in addition to R software.
6. Results Table 2 shows the descriptive values of each of the relevant quantitative variables related to the ICAP and SIS measurements, taking into account the age of the subjects. Correlation coefficients were also obtained for the three variables above, with the only statistically significant result being the correlation between the scores for the ICAP and the EIS (r = .620; p < .001), which is an indication of a certain degree of concurrent validity between the two tests in the statistical direction, namely an observable inverse relationship, as seen in Fig. 1. As a consequence of this results, it may be useful to estimate the EIS from the ICAP’s values, since actually the ICAP measure is the only indicator used by the Government. As regards the behavior of the two indices under consideration here, in terms of the demographic variables in the sample, there were no statistically significant differences found when broken down by center of data collection and administration, by the age of the individuals with ID (F3,30 = 2.085; p = .105) or by ICAP score (F3,30 = 1.191; p = .316), although there were statistically significant differences found when comparing SIS averages between different centers(F3,30 = 3.400; p = .020), such that, when applying the Bonferroni correction, the center FRN displayed higher mean values than the rest of the centers (MFRN = 103.26 with SDFRN = 8.85, with the rest of the centers displaying mean values of between 97.45 and 100.34), all of which would indicate that the degree of intensity of the effect is quite low (R2 = .07). Nor did the variable Sex display significant effects by age (t = 0.966; gl = 132; p = .336), ICAP scores (t = 0.326; gl = 132; p = .745), or EIS scores (t = 0.561; gl = 132; p = .576). These results confirm the independence of the psychometric measures from the sociodemographic characteristics and confirm the possibility of a unidimensional standardization applied to observed EIS distribution. To supplement the above calculations, an estimate was also made of the nonparametric correlation between the values of the two measurement valuables with the criterion of support such that the ICAP presents a statistically significant correlation (r = .764; p < .001), as do the values of the SIS (r = .377; p < .001), the latter with a negative sign due to the inverse nature of the scoring for the SIS. It seems clear that the criterion level of support corresponds to a much greater extent with the ICAP than the SIS in light of the intensity of the correlation. In fact, the level of support criteria are derived from the ICAP scores, and it thus stands to reason that the correspondence between these two figures should be much clearer than that seen with the SIS values. This statement is backed up by an analysis of the discriminatory capacity of the ICAP as compared to that of the SIS when it comes to discriminating between the six groups of different levels of support. The two canonical discriminant functions were obtained so as to assess the degree to which each of the two measurement tools, the ICAP and the SIS, are useful for the purposes of distinguishing between the groups with differing levels of support. The results obtained are seen in Table 3. It is obvious that the SIS is clearly inferior to the ICAP according to this measurement criterion. In order to analyze the way in which the SIS would be an appropriate method of distributing resources, we conducted a hierarchical cluster analysis for six groups (the same as the number of levels) of the SIS values that characterize each of these six theoretical groups determined by their varying levels of support. The six groups configured in this fashion obviously yielded especially significant results for the SIS values, such that the means for each group would be those found in Table 4 below. Table 2 Descriptions of the variables. Minimum
Age of person with ID ICAP score SIS index score
17 1 75
Maximum
69 8 120
Mean
St. dev.
Statistical
Standard error
45.94 4.60 100.34
.953 .132 .779
11.036 1.522 9.018
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120
SIS Score
110
100
90
80
2
4
6
8
Icap Score Fig. 1. Bivariate distribution graph of the ICAP and SIS scores.
These reference values were fully confirmed through the application of a Discriminant Analysis using this criterion, with results indicating that 100% of the cases evaluated here had been correctly classified. Taking into account the various suppositions that go along with estimating Confidence Intervals, and applying the concepts of standard error estimation based on the Bootstrap algorithms, Table 5 shows the score ranges that correspond to each support level group according to the SIS criteria.
7. Discussion It is clear that resource assignment has become an issue of the utmost importance, especially in these harsher economic times. In this article, we have attempted to approach resource assignment using a perspective that is closely linked to the assessment of individual needs for support. Although some departments with the Catalan government have already adopted this way of thinking, which has also been enshrined in law (Decree 318/2006 on Residential Accommodation for People with Disabilities), the proposals made herein differ in certain basic aspects with the regime that is currently in place. Our first proposal is the use of the measurement tool SIS, one that has been tailored to the Catalan population and designed specifically so as to measure the needs for support of individuals. At a risk of stating the obvious, it is essential that in order for resources to be assigned according to need for support, these needs are assessed using a measurement tool with the appropriate features. Secondly, it is important to use a process that allows for the creation
Table 3 Results of the two discriminant analyses for the two measures, ICAP and SIS. Contrast
Canonical correlation
Wilksl
Total correctly classified cases
ICAP SIS
.789 .505
.377 (p < .001) .745 (p < .001)
61.9% 36.6%
Table 4 Means, standard deviations and sizes of each group according to the assessment criteria generated by the SIS. Groups by SIS criteria
Mean
Standard deviation
1 2 3 4 5 6
75.33 86.56 94.82 102.54 108.48 114.64
.577 2.707 1.898 1.899 1.703 2.111
3 16 34 41 29 11
Total
100.34
9.018
134
Size of each group
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SIS score range
1 2 3 4 5 6
Up Up Up Up Up Up
to to to to to to
76 88 96 104 110 the maximum score
of groups with varying degrees of need for support and to assign resources to them accordingly. In other words, resource assignment is considered in light of the collection and analysis of data on a sample of the population of Catalonia residing in homes, the division of the sample into six levels of support with a solid empirical basis, distinct from the categorizations usually used. Thirdly, we stressed the importance of fairness and efficiency, as defined above, when carrying out this work. In accordance with these principles, and with the objectives of this study in mind, one can draw the following conclusions. Firstly, through the use of the data gathered using the SIS, six different groups of people with disabilities, each with differing levels of need for support, were found within the sample from the Catalan population. It is clear that the number of levels or categories should be determined by the data (Kimmich et al., 2009). The reason for establishing categories is to divide up the population by their needs for support, and consequently be able to assign resources in the fairest and most efficient way possible. For Catalonia and for those who live in these homes, this categorization should lay the groundwork for the individualized assignment of resources. It should also be noted that this division into six groups is similar to what has been proposed in other contexts (Agnello, Misenheimer, & Fortune, 2012; Kimmich et al., 2009). However, there needs to be confirmation that the model proposed distinguishes correctly between those with differing needs for support and that within each of the categories the individuals in general display comparable levels of need for support (Agnello et al., 2012). Secondly, the support levels or categories derived from the SIS are consistent with but independent of those contained in the ICAP. The ICAP is the measurement tool that is currently employed by Catalonia for the assignment of resources. It should be made clear that the SIS and the ICAP do not measure exactly the same construct. The data collected in this study show that the SIS more accurately identifies needs for support than the ICAP, just as has been found in other studies (Fortune, Agosta, & Bershadsky, 2011). The SIS is thus confirmed as being a good tool for measuring the needs for support among people with ID (Whemeyer et al., 2009). Finally, from the above conclusions and from our data that come from an exploratory hierarchical cluster analysis for six groups, we believe that the SIS may be useful to adjust the assignment of resources to the type and intensity of support required by people with ID residing in homes in Catalonia. In other words, the six categories of need for support resulting from our statistically study could form the basis for fair and efficient assignment for those who live in this type of residence. That said, this study has some limitations. Among them is the fact that the population studied does not represent all of those living in homes throughout Catalonia. Although there is some disagreement as to whether it is necessary to work with the entirety of the population, or whether a sample is enough for the purposes of making research assignment proposals (Kimmich et al., 2009; Smith & Fortune, 2008), it is clear that with a larger sample the results would have greater consistency and validity. Another limitation is the study’s failure to specify what the resource assignment arising from the new system of categorization of needs for support would look like (Van Loon, 2009). In this regard, the study does not go beyond proposing a new system to assess the needs for support of the people with ID who live in homes in Catalonia and outlining categories to be used as the basis for resource assignment. The study considers and raises new questions and perspectives with which future researchers will have to engage. It would be useful to validate the results of this study with a larger population. As we said earlier, this would lend greater consistency and validity to the model proposed. In addition, it would be beneficial to extend this study to other populations and types of service, with a special emphasis on distinguishing between day care centers and residential services. Another aspect worthy of consideration stems from the need to connect the information gathered using the SIS to other types of information, both economic and personal (structural expenses of the service, ‘‘unpaid supports’’, etc.). This would allow for the development of individualized budgets that could take into account both aspects related to the person’s support profile and the structural costs of the service. Finally, it will be necessary to plan the necessary steps and processes to be undertaken by the Catalan government in order to adopt and apply this new model of resource assignment. It is, in short, a fairer and more efficient way of assigning resources that will help us move toward a new model of services for people with IDD in which the driving force behind decision-making processes will be individual assessments of their needs for support and corresponding economic assignment. We are all aware of the inherent difficulties faced by any process of change, especially when the changes demand efforts from those at various levels of an established system of services (professionals, services, institutions, public agencies). However, in these times of budget cuts and decreasing resources (Wolfensberger, 2010), making an attempt to assign resources more fairly and efficiently has become not only a challenge, but also a necessity.
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References Agnello, B., Misenheimer, A., & Fortune, J. (2012). North Carolina: A model validation of support categories informed by the supports intensity scale. Charlotte, United States: Poster presented at the AAIDD Annual Meeting 2012. Agosta, J., Fortune, J., Kimmich, M., Melda, K., Smith, D., Auerbach, K., et al. (2009). Ten issues for States to consider in implementing individual or level-based budget allocations. Houston, TX: ILRU Program. Bruininks, R. H., Hill, B. K., Weatherman, R. F., & Woodcock, R. W. (1986). Inventory for Client and Agency Planning (ICAP). Chicago: Riverside. Fortune, J., Agosta, J., & Bershadsky, J. (2011). Validity and reliability results regarding the SIS. Tualati, OR: Human Services Research Institute (HSRI). Gine´, C. (2008). Catalan translation of the supports intensity scale. In J. R. Thompson, M. Tasse´, & R. L. Schalock (Eds.), White paper international implementation of the supports intensity scale. Washington, DC: American Association on Intellectual and Developmental Disabilities. Gine´, C., Alomar, E., Carasa, P., Font, J., Garcia, M., Gordillo, C., et al. (2007). Escala d’Intensitat dels Suports. Barcelona: APPS. Go´mez, L., Verdugo, M. A., Arias, B., Navas, P., & Schalock, R. L. (2013). The development and use of provider profiles at the organizational and systems level. Evaluation and Program Planning, 40, 17–26. Kimmich, M., Agosta, J., Fortune, J., Smith, D., Melda, K., Auerbach, K., et al. (2009). Developing individual budgets and reimbursement levels using the supports intensity scale. Houston, TX: ILRU Program. Kober, R. (2010). Enhancing the quality of life of people with intellectual disabilities from theory to practice. London: Springer. MacLean, W. E., Jr., Heath, D., & Carter, C. (2012). Comparison the inventory for client and agency planning and the supports intensity scale for high utilization clients. A report prepared for the Behavioral Health Division of the Wyoming Department of Health. Laramie, WY: Wyoming Institute for Disabilities. Montero, D. (1999). Evaluacio´n de la conducta adaptativa en personas con discapacidades Adaptacio´n y Validacio´n del ICAP. Bilbao: Ediciones Mensajero. Schalock, R. L., Luckasson, R., Bradley, V., Buntix, W., Lachapelle, Y., Shogren, K. A., et al. (2012). User’s guide. Intellectual disability. Definition, classification and systems of support. Washington, DC: American Association on Intellectual and Developmental Disabilities. Schalock, R. S., Thompson, J. R., & Tasse´, M. (2008). White paper resource allocation and the supports intensity scale. Washington, DC: American Association on Intellectual and Developmental Disabilities. Smith, G., & Fortune, J. (2006). Assessment instruments and community services rate determination: Review and analysis. (http://www.ddrcco.com/pdfs/HSRI_Colorado_Report_6-30-2006.pdf). Smith, G., & Fortune, J. (2008). The supports intensity scale and resource allocation. AAIDD white paper resource allocation and the supports intensity scale. Washington, DC: American Association on Intellectual and Developmental Disabilities. Thompson, J. R., Bryant, B., Campbell, E. M., Craig, E. M., Hughes, C., Rotholz, D. A., et al. (2004). Supports intensity scale: Users manual. Translated and adapted to Catalan: (2007). Escala d’Intensitat dels Suports. Manual de l’usuari. Barcelona, Federacio´ Catalana Pro Persones amb Retard Mental. (APPS), Washington DC: American Association on Mental Retardation. Van Loon, J. (2009). Uso de la escala de Intensidad de Apoyos en la pra´ctica. Asignacio´n de recursos y planificacio´n de apoyos individuales basados en la Escala de Intensidad de Apoyos. Siglo Cero, 40(1), 54–66,. (229). Van Loon, J., Bonham, G. S., Peterson, D. D., Schalock, R. L., Claes, C., & Decramer, A. E. M. (2013). The use of evidence-based outcomes in systems and organizations providing services and supports to persons with intellectual disability. Evaluation and Program Planning, 36, 80–87. Verdugo, M. A., Arias, B., Go´mez, L. E., & Schalock, R. L. (2010). Development of an objective instrument to assess quality of life in social services: Reliability and validity in Spain. International Journal of Clinical and Health Psychology, 10(1), 105–123. Whemeyer, M., Chapman, T. H., Little, T. D., Thompson, J. R., Schalock, R. L., & Tasse´, M. (2009). Efficacy of the Supports Intensity Scale (SIS) to predict extraordinary support needs. American Journal of Intellectual and Developmental Disabilities, 114(1), 3–14. Wolfensberger, W. (2010). How to comport ourselves in era of shrinking resources. Intellectual and Developmental Disabilities, 48, 148–162.
Contents lists available at ScienceDirect
Research in Developmental Disabilities
Using the sis to better align the funding of residential services to assessed support needs§ Climent Gine´ a,*, Josep Font b, Joan Gua`rdia-Olmos c, Anna Balcells-Balcells a, Judit Valls d, Maria Carbo´-Carrete´ a a
University Ramon Llull, c/ Cı´ster, 34, 08022 Barcelona, Spain CPT Estel, c/ Jaume I el Conqueridor, 19, 08500 Vic, Spain c University of Barcelona, Ps. de la Vall d’Hebron, 171, 08035 Barcelona, Spain d University of Girona, Campus Montilivi, 17071 Girona, Spain b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 18 October 2013 Received in revised form 30 January 2014 Accepted 31 January 2014 Available online 11 March 2014
Resource allocation in social services has become an issue of the utmost importance, especially in these times in which budgets are tight. The aim of this study is to explore whether the SIS allows for the identification of groups of individuals presenting ID with different needs for support living in residential services in Catalonia, Spain, and if so whether or not a more efficient and fairer system of funding could be considered in comparison with the ICAP. The results show that the six categories of need for support resulting from this study could form the basis for better alignment the funding for those who live in this type of residence according to their assessed support needs. ß 2014 Elsevier Ltd. All rights reserved.
Keywords: Resource allocation Intellectual disabilities Residential services Support needs
1. Introduction Over the last few decades, the standard of living of individuals with intellectual and developmental disabilities (IDD), has seen considerable improvements due to social and economic changes. The progress that has been made in research has led to significant changes in the understanding of these individuals and the way services intended for them are organized and provided (Kober, 2010; Schalock et al., 2012; Van Loon et al., 2013; Go´mez, Verdugo, Arias, Navas, & Schalock, 2013). Acting in their respective spheres, international organizations, professionals, researchers, governmental agencies, and people with IDD and their families have all made critical contributions to the creation of new contexts and opportunities for the full development of these individuals and have helped enhance their quality of life. One of the key elements in the transformation the IDD field is connected to the gradual international adoption of the support paradigm, stemming from the definitions set out by the AAIDD in 1992, 2002 and 2010. This paradigm is an approach to people with IDD that emphasizes their possibilities and what they are able to accomplish with the proper support, rather than focusing on the areas in which they are lacking. According to this perspective, as Van Loon (2009) points out, all people should be viewed in light of the social, political and economic context in which they live, and when adequate support is available, people with IDD, who are so often at risk of
§
The EIS (Escala d’Intensitat de Supports) is Catalonia’s adaptation and standardization of the Supports Intensity Scale (AAIDD, 2004). * Corresponding author. Tel.: +34 932533186. E-mail address: [email protected] (C. Gine´).
0891-4222/$ – see front matter ß 2014 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ridd.2014.01.028
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exclusion, should have access to the resources and opportunities that society can provide so that they are able to realize their dreams and live the kind of life they choose. Therefore, public policies and organization practices should include as a critical and indispensable element a process to determine what patterns of support people with IDD need, and to ensure that they are accessible in all contexts of their lives. Thus, it should come as no surprise that there is a growing interest, especially internationally, in linking the financing of services for people with IDD to the results obtained from an assessment of the support that these individuals may need throughout their lives (Schalock, Thompson, & Tasse´, 2008; Smith & Fortune, 2008; Kimmich et al., 2009; Van Loon, 2009). This interest can be attributed to several factors, including a desire to achieve greater fairness when financing services for different individuals, meaning that resources should be assigned according to the real needs for the support of people with IDD. Another goal is to ensure a more efficient use of resources at a certain level of quality. Additionally, in some countries, a third goal is the creation of a mechanism to allow people and their families to directly purchase whatever services they choose (Smith & Fortune, 2008). But the most important has to do with the progressive adoption of the constructs of quality of life and support paradigm that lead to the redefinition of organizations and the services and supports they provide to persons with intellectual disabilities (Van Loon et al., 2013). Specifically, we refer to the importance of the quality of life-related personal outcomes and their consequences at the micro, meso and macrosystem level. All of this takes place in a context in which, as Kimmich et al. (2009) points out, it is necessary to reconcile an increased demand for services with a decrease in the budget of public agencies as a result of the worldwide economic crisis, whose effects have been especially severe here in our country. This set of circumstances has led to a rethinking of the financing of services for people with IDD in broad terms, so much so that Smith and Fortune (2008) refer to a new ‘‘emerging framework’’ that is characterized by (a) prioritizing the individual and not the program or service when assigning financing, (b) developing financing systems based on the characteristics and needs of the person rather than on the service attending to the person, (c) admitting that if financing fails to meet the individual’s needs, it will be impossible for him or her to make valuable progress, (d) taking into account the cost of the kinds of the support the person receives that are usually not paid for (including facilities for the family, among other things), and (e) accepting that payments to organizations that provide services should cover both the organizations’ structural expenses and costs arising from the different levels of need for support of the beneficiaries. This situation stands in contrast to the lack of studies and initiatives of this sort in Spain, even though the reality on the ground is very similar to that in other countries; both the associations, generally responsible for providing services, and public authorities who assume most of the cost, share the concern for funding more efficient, equitable and better adapted to the support profile of people with IDD. Therefore, the time has come to carry out research projects, such as the one presented by this article. The study reported in this article was conducted along the lines of those conducted in other countries that serve to match resources with the real needs for support among people with IDD in Catalonia, with a special focus on new instruments of measurement, such as the SIS (Thompson et al., 2004) and its adaptation and standardization to Catalonia: EIS (Gine´ et al., 2007). 2. The importance of the SIS for resource allocation As Kimmich et al. (2009) point out, the key to attaining fairer and more efficient services for people with IDD is the gathering of reliable and accurate information on individuals’ needs for support. Unlike other measurement tools in the field of IDD that either focus more on exploring disorders and difficulties or on measuring adaptive skills (ICAP), the SIS is an instrument with an enormous amount of potential (Kimmich et al., 2009) in that it attempts to identify the supports a person needs in order to fully take part in the activities of everyday life in different environments. Anyway it is worth remembering that ICAP has been widely used since the 90s in order to establish an individual’s eligibility for the different services according to the rate of adaptive behavior and behavioral problems and, therefore, to guide funding decisions (Smith & Fortune, 2006; MacLean, Heath, & Carter, 2012). Since the SIS appeared, several studies have been conducted comparing the results between the two instruments that allow to conclude that ICAP and SIS measure different constructs and also respond to different conceptual models; while the ICAP is based on a person’s independent functioning level (deficit approach) (MacLean et al., 2012) and aims at assessing adaptive behavior, the SIS has been built from the support paradigm and measures the intensity of support that a person needs to full participation in the community (Smith & Fortune, 2006; Whemeyer et al., 2009). In this sense, according to Verdugo et al. (2010), the correlation coefficients obtained between SIS and ICAP scores ranged from .498 and .589; this significant negative correlation coefficients are consistent with other psychometric studies such as the one carried out by Whemeyer et al. (2009) who found a correlation between Total Support Needs Index scores and the ICAP Service Scores of .49. Moreover Kimmich et al. (2009) argue that the ICAP comparing to the SIS shows the validity and flexibility of the SIS. In the White Paper on SIS (Schalock et al., 2008), there is a description of two new possible ways of using the SIS: (a) the use of the scale to assign resources and (b) its use in the planning of individual support. The assignment of resources using the SIS is sure to give rise to several questions, some of which have been the focus of research over the last few years (Agosta et al., 2009). One of the most critical issue is to what extent is the SIS a good instrument of measure for use in assessing the support profile that a person with IDD may need throughout his or her adult life, and in broader terms, is it more sensitive to these needs for support than other forms of measurement? Whemeyer et al. (2009) recently carried out a study to explore the efficacy of the SIS for the measurement of needs for the support of individuals with IDD. According to the authors of the study, their results clearly show the SIS to be an effective instrument for the measurement of varying degrees of need for
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support among people with IDD, as well as for use as a contributing factor in decisions on the assignment of resources. In addition, they state that the SIS measures a concept different from that measured by personal competence assessment tools in general and traditional assessments of adaptive skills (ICAP) in particular. All of this suggests that, as indicated by Kimmich et al. (2009), the SIS displays a greater degree of face validity than the ICAP and other traditional instruments for the measurement of needs for support. Other issues are also currently the subject of research (Agosta et al., 2009), which is sure to help pave the way for an effective use of the SIS in making decisions about resource assignment. For example, which of the factors measured by the SIS best predict the need for support? All financing decisions can be made based on the support profile? What can be done to fine tune the relationship between the assessment of a person’s needs for support and the corresponding available budget? How can we ensure that the model considers people with exceptional degrees in need for support, those who are thus likely to generate more expenses, in order to make sure that everyone receives what they need, and neither more nor less? And finally, how often do we need to reassess the need for support? What all of these studies seem to make clear is that the assignment of resources to people with IDD using the support profile obtained from the SIS represents a decisive step toward greater efficiency and fairness, and that it has important advantages both for the individuals and for institutions and public agencies. This is why, as Kimmich et al. (2009) point out, public agencies are in need of a road map to point them in the right direction, a map that will be drawn by the research we are able to generate, among other sources. 3. Current financing of residential services in Catalonia In 2006, the Catalan government broke new ground in Spain by establishing that in the social service field, as was already the practice in other countries, financing should be determined by the need for support as assessed by the ICAP; it is important to say that in those days the SIS was not known nor was validated in Spain. The truth is that currently there is no data available on the efficacy and efficiency of the measure (ICAP). Specifically, no study has addressed whether or not the assignment of resources responds to the individual’s needs for support or whether or not the instrument used to assess support is appropriate. Therefore it is absolutely necessary to overcome this gap in order to align resources with the real needs of people with DID support in Catalonia. Nowadays in Catalonia Decree 318/2006 on Residential Accommodation for people with disabilities regulates the support provided by residential accommodation services for these individuals, and it also sets out the conditions for the provision of these services within the regulatory framework of social services. The residential accommodation services may be used by anyone residing in Catalonia with an officially recognized degree of disability, whether physical or intellectual, of 33% or more and which necessitates the provision of services in a home. In the words of this decree, ‘‘Residential Accommodation Services devoted to individuals with physical or intellectual disabilities are provided in a manner tailored to the individual and with varying degrees of intensity of support in accordance with the needs of the person so as to promote his or her independence within the social environment.’’ The table below shows the six levels of intensity of support in these homes, along with their corresponding types of financing (Table 1). It should be noted that while the model outlined in this decree represents an important step forward in terms of resource assignment based on need for support, the categories it establishes and their corresponding expenditures do not have the empirical backing they need in order to meet the criteria of fairness and efficiency. 4. Objective of the study The objectives of this study are (1) to fill the gap of research in our country linking funding services for people with intellectual disabilities to the results obtained from an assessment of the support needs, (2) to explore whether the EIS, the adaptation and standardization of the Supports Intensity Scale (SIS) to the population of Catalonia, allows for the identification of groups of individuals with IDD with different needs for support and (3) if so, whether or not an efficient and fair system of financing could be considered in accordance with the needs of these individuals with IDD. 5. Methodology 5.1. Participants The criteria of inclusion and exclusion that were applied in order to select the sample group were as follows: (a) participants were required to be people with IDD, (b) to use a residential accommodation service (according to the national regulations only people older than 18 years have access to the residential facilities) and (c) to represent varying degrees of disability according with the official statement of the degree of disability issued by the Government and their ICAP scores (intermittent, limited, limited with special care, extensive, extensive with special care, generalized). The degree of disability is defined according to three levels of severity (33–66%, 65–74%, and 75). The final sample group was made up of a total of 134 people from four different homes throughout Catalonia. Of the total number of participants, 41% were women and 59% were men, and the average age was 45.94 years old. As to the location of
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Table 1 Relationship between type of support, ICAP level and financing assigned. Type of support
Description
ICAP level
Financing
1. Intermittent support
Provided sporadically or occasionally, when needed Provided occasionally but regularly for a limited period of time and at regular intervals, in certain aspects of the life of the person
Levels 7-8-9 (limited care to the individual, and/or periodic monitoring) Levels 5–6 (Regular care of the person, and/or frequent supervision)
32.20 s/day
2. Limited support
3. Intermittent or limited support requiring special care due to mental health, behavioral problems, or aging 4. Extensive support
5. Extensive support with special care due to mental health, behavior problems, or aging 6. Generalized support
65.32 s/day
Levels 5-6-7-8
69.19 s/day
Provided continuously, with no time limit and with a regular or high degree of frequency, and which affects certain situations in the life of the person with the disability, (home, work school, community life. . .) In some situations, the person is dependent on others This support is considered only in terms of financing, but is not discussed in the regulations.
Levels 3–4 (intense care for the person, and/or constant supervision)
69.19 s/day
We believe that the ICAP score of this support would be level 3–4
76.49 s/day
Provided continuously, possibly throughout the life of the person with the disability, with a high degree of frequency, affecting all or nearly all situations in the life of the person. The person is dependent on others.
Levels 1–2 (total care for the person, and/or complete supervision)
71.29 s/day
the homes, 40.3% lived in a semi-urban setting, while 59.7% resided in an urban environment. In terms of ICAP levels of support, 8.2% fell into the category of intermittent, 26.9% limited, 9.7% limited with special care, 31.8% extensive, 15.7% extensive with special care and 1.5% generalized. 5.2. Measurement tools The measurement tools used to carry out this study were the adaptation and translation of the SIS for the Catalan population with IDD, known as the Escala d’Intensitat del Suports (EIS) (Gine´ et al., 2007; Gine´, 2008), and the Inventory for Client and Agency Planning (ICAP) (Bruininks, Hill, Weatherman, & Woodcock, 1986; Montero, 1999). The SIS includes 86 items divided into three sections. Section 1 gathers information on the needs of the individual in terms of the frequency, duration and type of help that he or she requires. This section contains six sub-scales that account for the most important areas of support and allow for an identification of the Support Needs Index, with scores that can range from 55 to 145. Section 2 is made up of the Supplementary Scale of Protection and Defense, and it covers the types of activities the individual carries out related to his or her capability of self-defense and protection. Just as in Section 1, each activity is assessed in terms of the frequency, time and type of support. The score for this section is calculated separately from that of Section 1 and is not standardized. It can range from 0 to 94. Section 3, the Scale of Medical Support and Exceptional Behavioral Needs, describes the additional support the individual may need as a supplement to those covered in Section 1, due to his or her medical or behavioral conditions. This section is made up of two subsections: the supports stemming from medical conditions (Part A) and the supports stemming from behavioral conditions (Part B). The score for this section is also calculated independently of that of Section 1, and is also nonstandardized. Scores for part A can range from 0 to 48, while those for part B can range from 0 to 39. It should be noted that for the purposes of this study, only the scores from Section 1 of the SIS were taken into account. With regard to psychometric properties, both the original version of the SIS and its adaptation for Catalonia display a high degree of reliability (a = 0.99 in the case of the American version, and a = 0.97 for the Catalan scale) and an acceptable level of content and criterion validity (Thompson et al., 2004; Gine´ et al., 2007; Gine´, 2008). The Spanish version of ICAP is a standardized tool whose objective is to assess the degree of adaptive behavior of individuals with disabilities. It is made up of 77 items, divided into four areas: social and communication skills, personal living skills, community living skills and motor skills. Like the SIS, this tool yields a result in the form of a Level of Service Index that combines scores for adaptive behavior and behavioral problems and offers an estimate of the intensity, supervision and instruction required by the individual to function effectively in his or her context. Each of the items on this scale is scored according to the degree of help the person needs in order to carry out the activity. A score of 1 means that the person requires complete supervision or care, while a 9 means that he or she needs little or no help with daily life. The psychometric properties of the Spanish version of this measurement tool have been very solid, both
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in terms of reliability (a = 0.85, test-retest reliability and consistency among the scores given by independent testers) and content and construct validity (Montero, 1999). 5.3. Procedure In order to gather a sample that corresponded to our objectives, we made a request for the collaboration of several residential accommodation services in Catalonia. Once the centers had agreed to participate, they were asked for information on their users, specifically the SIS and ICAP results for each of them. Because the Catalan government assigns resources to centers according to the ICAP, they all had the data from this scale available. However, only one of the centers had SIS data. In order to obtain this data, two parallel actions were undertaken: (1) the research team trained the professionals at these centers so that they were able to administer the measurement test correctly, and (2) some researchers went to the centers in order to administer the test so as to lend support to the professionals at the centers. The managers of the homes accepted the proposal, and the SIS was administered over a period of four months, following the instructions in the Manual. Once the SIS had been administered and the ICAP scores gathered, the next step was the statistical treatment of the data using SPSS software, version 19.0, in addition to R software.
6. Results Table 2 shows the descriptive values of each of the relevant quantitative variables related to the ICAP and SIS measurements, taking into account the age of the subjects. Correlation coefficients were also obtained for the three variables above, with the only statistically significant result being the correlation between the scores for the ICAP and the EIS (r = .620; p < .001), which is an indication of a certain degree of concurrent validity between the two tests in the statistical direction, namely an observable inverse relationship, as seen in Fig. 1. As a consequence of this results, it may be useful to estimate the EIS from the ICAP’s values, since actually the ICAP measure is the only indicator used by the Government. As regards the behavior of the two indices under consideration here, in terms of the demographic variables in the sample, there were no statistically significant differences found when broken down by center of data collection and administration, by the age of the individuals with ID (F3,30 = 2.085; p = .105) or by ICAP score (F3,30 = 1.191; p = .316), although there were statistically significant differences found when comparing SIS averages between different centers(F3,30 = 3.400; p = .020), such that, when applying the Bonferroni correction, the center FRN displayed higher mean values than the rest of the centers (MFRN = 103.26 with SDFRN = 8.85, with the rest of the centers displaying mean values of between 97.45 and 100.34), all of which would indicate that the degree of intensity of the effect is quite low (R2 = .07). Nor did the variable Sex display significant effects by age (t = 0.966; gl = 132; p = .336), ICAP scores (t = 0.326; gl = 132; p = .745), or EIS scores (t = 0.561; gl = 132; p = .576). These results confirm the independence of the psychometric measures from the sociodemographic characteristics and confirm the possibility of a unidimensional standardization applied to observed EIS distribution. To supplement the above calculations, an estimate was also made of the nonparametric correlation between the values of the two measurement valuables with the criterion of support such that the ICAP presents a statistically significant correlation (r = .764; p < .001), as do the values of the SIS (r = .377; p < .001), the latter with a negative sign due to the inverse nature of the scoring for the SIS. It seems clear that the criterion level of support corresponds to a much greater extent with the ICAP than the SIS in light of the intensity of the correlation. In fact, the level of support criteria are derived from the ICAP scores, and it thus stands to reason that the correspondence between these two figures should be much clearer than that seen with the SIS values. This statement is backed up by an analysis of the discriminatory capacity of the ICAP as compared to that of the SIS when it comes to discriminating between the six groups of different levels of support. The two canonical discriminant functions were obtained so as to assess the degree to which each of the two measurement tools, the ICAP and the SIS, are useful for the purposes of distinguishing between the groups with differing levels of support. The results obtained are seen in Table 3. It is obvious that the SIS is clearly inferior to the ICAP according to this measurement criterion. In order to analyze the way in which the SIS would be an appropriate method of distributing resources, we conducted a hierarchical cluster analysis for six groups (the same as the number of levels) of the SIS values that characterize each of these six theoretical groups determined by their varying levels of support. The six groups configured in this fashion obviously yielded especially significant results for the SIS values, such that the means for each group would be those found in Table 4 below. Table 2 Descriptions of the variables. Minimum
Age of person with ID ICAP score SIS index score
17 1 75
Maximum
69 8 120
Mean
St. dev.
Statistical
Standard error
45.94 4.60 100.34
.953 .132 .779
11.036 1.522 9.018
C. Gine´ et al. / Research in Developmental Disabilities 35 (2014) 1144–1151
1149
120
SIS Score
110
100
90
80
2
4
6
8
Icap Score Fig. 1. Bivariate distribution graph of the ICAP and SIS scores.
These reference values were fully confirmed through the application of a Discriminant Analysis using this criterion, with results indicating that 100% of the cases evaluated here had been correctly classified. Taking into account the various suppositions that go along with estimating Confidence Intervals, and applying the concepts of standard error estimation based on the Bootstrap algorithms, Table 5 shows the score ranges that correspond to each support level group according to the SIS criteria.
7. Discussion It is clear that resource assignment has become an issue of the utmost importance, especially in these harsher economic times. In this article, we have attempted to approach resource assignment using a perspective that is closely linked to the assessment of individual needs for support. Although some departments with the Catalan government have already adopted this way of thinking, which has also been enshrined in law (Decree 318/2006 on Residential Accommodation for People with Disabilities), the proposals made herein differ in certain basic aspects with the regime that is currently in place. Our first proposal is the use of the measurement tool SIS, one that has been tailored to the Catalan population and designed specifically so as to measure the needs for support of individuals. At a risk of stating the obvious, it is essential that in order for resources to be assigned according to need for support, these needs are assessed using a measurement tool with the appropriate features. Secondly, it is important to use a process that allows for the creation
Table 3 Results of the two discriminant analyses for the two measures, ICAP and SIS. Contrast
Canonical correlation
Wilksl
Total correctly classified cases
ICAP SIS
.789 .505
.377 (p < .001) .745 (p < .001)
61.9% 36.6%
Table 4 Means, standard deviations and sizes of each group according to the assessment criteria generated by the SIS. Groups by SIS criteria
Mean
Standard deviation
1 2 3 4 5 6
75.33 86.56 94.82 102.54 108.48 114.64
.577 2.707 1.898 1.899 1.703 2.111
3 16 34 41 29 11
Total
100.34
9.018
134
Size of each group
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C. Gine´ et al. / Research in Developmental Disabilities 35 (2014) 1144–1151 Table 5 SIS scores corresponding to each level of support. Groups according to SIS
SIS score range
1 2 3 4 5 6
Up Up Up Up Up Up
to to to to to to
76 88 96 104 110 the maximum score
of groups with varying degrees of need for support and to assign resources to them accordingly. In other words, resource assignment is considered in light of the collection and analysis of data on a sample of the population of Catalonia residing in homes, the division of the sample into six levels of support with a solid empirical basis, distinct from the categorizations usually used. Thirdly, we stressed the importance of fairness and efficiency, as defined above, when carrying out this work. In accordance with these principles, and with the objectives of this study in mind, one can draw the following conclusions. Firstly, through the use of the data gathered using the SIS, six different groups of people with disabilities, each with differing levels of need for support, were found within the sample from the Catalan population. It is clear that the number of levels or categories should be determined by the data (Kimmich et al., 2009). The reason for establishing categories is to divide up the population by their needs for support, and consequently be able to assign resources in the fairest and most efficient way possible. For Catalonia and for those who live in these homes, this categorization should lay the groundwork for the individualized assignment of resources. It should also be noted that this division into six groups is similar to what has been proposed in other contexts (Agnello, Misenheimer, & Fortune, 2012; Kimmich et al., 2009). However, there needs to be confirmation that the model proposed distinguishes correctly between those with differing needs for support and that within each of the categories the individuals in general display comparable levels of need for support (Agnello et al., 2012). Secondly, the support levels or categories derived from the SIS are consistent with but independent of those contained in the ICAP. The ICAP is the measurement tool that is currently employed by Catalonia for the assignment of resources. It should be made clear that the SIS and the ICAP do not measure exactly the same construct. The data collected in this study show that the SIS more accurately identifies needs for support than the ICAP, just as has been found in other studies (Fortune, Agosta, & Bershadsky, 2011). The SIS is thus confirmed as being a good tool for measuring the needs for support among people with ID (Whemeyer et al., 2009). Finally, from the above conclusions and from our data that come from an exploratory hierarchical cluster analysis for six groups, we believe that the SIS may be useful to adjust the assignment of resources to the type and intensity of support required by people with ID residing in homes in Catalonia. In other words, the six categories of need for support resulting from our statistically study could form the basis for fair and efficient assignment for those who live in this type of residence. That said, this study has some limitations. Among them is the fact that the population studied does not represent all of those living in homes throughout Catalonia. Although there is some disagreement as to whether it is necessary to work with the entirety of the population, or whether a sample is enough for the purposes of making research assignment proposals (Kimmich et al., 2009; Smith & Fortune, 2008), it is clear that with a larger sample the results would have greater consistency and validity. Another limitation is the study’s failure to specify what the resource assignment arising from the new system of categorization of needs for support would look like (Van Loon, 2009). In this regard, the study does not go beyond proposing a new system to assess the needs for support of the people with ID who live in homes in Catalonia and outlining categories to be used as the basis for resource assignment. The study considers and raises new questions and perspectives with which future researchers will have to engage. It would be useful to validate the results of this study with a larger population. As we said earlier, this would lend greater consistency and validity to the model proposed. In addition, it would be beneficial to extend this study to other populations and types of service, with a special emphasis on distinguishing between day care centers and residential services. Another aspect worthy of consideration stems from the need to connect the information gathered using the SIS to other types of information, both economic and personal (structural expenses of the service, ‘‘unpaid supports’’, etc.). This would allow for the development of individualized budgets that could take into account both aspects related to the person’s support profile and the structural costs of the service. Finally, it will be necessary to plan the necessary steps and processes to be undertaken by the Catalan government in order to adopt and apply this new model of resource assignment. It is, in short, a fairer and more efficient way of assigning resources that will help us move toward a new model of services for people with IDD in which the driving force behind decision-making processes will be individual assessments of their needs for support and corresponding economic assignment. We are all aware of the inherent difficulties faced by any process of change, especially when the changes demand efforts from those at various levels of an established system of services (professionals, services, institutions, public agencies). However, in these times of budget cuts and decreasing resources (Wolfensberger, 2010), making an attempt to assign resources more fairly and efficiently has become not only a challenge, but also a necessity.
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