Individual Support Plans: enhancing personal outcomes

Individual Support Plans: enhancing personal outcomesJos H.M. van Loon, PhD. Arduin Foundation and Department of Special Education of the Ghent University 1. Introduction For organizations providing supports to persons with intellectual disability, it is their main task to enhance the quality of life of their clients. Furthermore, one of the current challenges for these organizations, which is more and more emphasized, is the need to use evidence-based practices. Evidence-based practices (EBPs) are defined as practices that are based on current best evidence that is obtained from credible sources that used reliable and valid methods and a clearly articulated and empirically supported theory or rationale (Schalock, Verdugo & Gomez, 2011). Evidence-based outcomes (EBOs) now are a critical component of evidence-based practices (Van Loon et al., 2012). Evidence-based outcomes are defined as measures obtained from the assessment of quality of life domain-referenced indicators that: (a) are based on a cross-culturally validated QOL conceptual and measurement model (Schalock, Verdugo, Jenaro, Wang, Wehmeyer, Xu et al., 2005; Wang, Schalock, Verdugo & Jenaro, 2010); (b) have utility in that they can be used for multiple purposes (Schalock, Verdugo, Bonham, Fantova & van Loon, 2008; van Loon, Claes, Van Hove, & Schalock, 2010); and (c) have robustness in reference to the reliability and validity of the assessment strategy employed (Claes, Van Hove, van Loon, Vandevelde, & Schalock, 2009). Evidence-based practices and evidence-based outcomes relate respectively to the throughput and output/outcome components of a program logic model. This means that the supports given by an service provider should be evidence based-based and lead to good evidence-based outcomes: good quality of life related personal outcomes. The present contribution focuses on the application of evidence-based outcomes to the assessment and use of quality of life-related personal outcomes and its use in Individual Supports Planning. In the Round Table the resulting Person centred Support System will be demonstrated. 2. Context Arduin is a Dutch organization that provides support services in living, daily activities, and work for 740 people with intellectual disability, 535 of whom receive 24 hour a day services/supports. Some 15 years ago a shift took place in Arduin from facility-centered services to an individualized community-based supports approach within the quality of life framework (Van Loon & Van Hove, 2001). Arduin has developed an organization framework that focuses on improving evidence-based outcomes at the individual level. Fundamental beliefs are basic to an organization’s commitment to a quality of life and the delivery of individualized supports. These beliefs are that: (a) the quality of life of people with disabilities is composed of those same factors (that is, core domains) and relationships that are important to all persons; (b) quality of life is enhanced by empowering persons to participate in decisions that affect their lives; (c) quality of life is enhanced by the acceptance and full integration of persons into their local communities; and (d) quality of life is enhanced through the provision of individualized supports (Brown & Brown, 2003; O’Brien & O’Brien, 1989; Schalock, Brown, Cummins, Mattikka, Felce, & Brown, 2000; Schalock & Verdugo, 2012 ; Vreeke, Janssen, Resnick, & Stolk, 1998). Arduin has embedded the improvement of one’s quality of life in its organization policies and practices, and the involvement of consumers in meaningful roles has become an essential organizational strategy. The key question is the degree to which consumers are involved in the development and implementation of their individual supports plans (ISP). Arduin developed an Individualized Supports System that is: person-centred (i.e., based on the person’s interests, preferences, needs, and natural support network); responsive (i.e., based on a dialogue between the person and those involved in the supports plan); flexible across the life span; proactive (i.e., equalizing opportunities with fellow citizens, empowering the person, generating effective social inclusion, and increasing social/community participation); and data based (i.e., based on the assessed pattern and intensity of support needs and evaluated in terms of assessed personal, quality of life-related outcomes). The outcomes of an individual supports plan for a person should be an enhanced quality of life. Determining whether this outcome occurs, requires the reliable and valid assessment of quality of life-related domains. The Personal Outcomes Scale (POS; van Loon, Van Hove, Schalock, & Claes, 2008), which is also based on the QOL conceptual model and measurement framework by Schalock and Verdugo (2002), was developed for that purpose. In the person-centred support system there is an alignment between the wishes and goals of a person, his or her support needs as measured by the Supports Intensity Scale (Thompson, Bryant, Campbell, Craig, Hughes, Rotholz et al., 2004), the Individual Supports Plan (ISP), and his or her quality of life as measured with the POS. This alignment among wishes and goals, assessed support needs, Individual Supports Plan components, and quality of life outcomes, creates an excellent opportunity to enhance clinical decisions regarding how to support people methodically in improving their quality of life. In Arduin this support system is communicated electronically in web-based applications (van Loon, Van Hove, & Schalock, 2009). 3. A web-based approach to individual support plans based on the standardized assessment of support needs, personal goals, and individualized supports, and the measurement of quality of life outcomes In developing Individual Support Plans (ISP) the two most important, and at the same time quite simple, questions are: 1) What does the person want?, and 2) Which support does the person need? The third question then is: 3) What is the purpose of support? What should be the outcome of the supports given to the person? And also here the answer is simple: the outcome should obviously be a good quality of life. If these are the starting points one can propose the following guidelines for an ISP. An ISP should:  Explore goals and personal perspectives: what does a person want in his life  Explore what support a person needs and wants: which supports are important for and which are important to the person  Formulate support strategies in answer to the personal goals, wants and needs  Monitor in dialogue with the person the process of support  Measure personal outcomes  Comprise an ongoing system of fine-tuning and adjusting  Use evidence based practices in doing so  Be transparent and comprehensible for the person Following these guidelines we developed an internet based application for an ISP in which the eight QOL dimensions provide the framework for developing support strategies, the dialogue with the client is built into the system of supports, and evidence based instruments are used to measure support needs and personal outcomes. In Figure 1 the scheme for this ISP is depicted. Figure 1 The scheme for an ISP The dialogue as central process As mentioned before the key question is the degree to which consumers are involved in the development and implementation of their individual supports plans (ISP). Central element in a support methodology therefore is the dialogue with the person. This dialogue is ongoing during the process of developing the ISP ánd during the supports as such. In fact, as the supports can be adjusted anytime, as a consequence of this dialogue, the process of developing an ISP is an ongoing process. The personal assistant is the professional who is responsible for dialogue with the person on the ISP. Each client has a personal assistant that he/she can call upon for support in the dialogue with the organization, in formulating wishes and support requests directed at the organization. The personal assistant has a regular contact with the client to speak about his wishes (concerning living, working and leisure), and the ways to give this content and shape. The results of this dialogue can be written down in the Personal Plan of the client. He or she maintains the communication between the various staff members of the organization, the client, his family and/or legal representative of the client. He/she sees to it that the agreed service and care is carried out in conformity with the wishes of the individual client. Therefore, it is fundamental that a personal assistant is not a direct caregiver towards his/her client, but in most cases a supportworker of the organization working in direct care with other clients. The personal assistant is, when required, the interpreter/translator of the wishes of the client, but always explicitly from the role of assistant. The intensity and frequency of this support is totally dependent on the request of the client (of course within the financial margins of the organization)! Component 1 Wishes, personal aspirations and goals: structured interview with the client Component 2 2.a. Determining Support Needs: to ánd for the person e.g. Interview with Supports Intensity Scale 2.b. If needed: additional diagnostics / assessment Component 3: Developing an Individual Supports plan a. The client (with his personal assistant) synthesize the wishes and goals with the support needs and come to an idea for an individual support plan: how do I want to be supported? b. This idea is discussed with the supportworkers /proffessionals (and the psychologist). c. Together they decide on a ISP on which support the person wants so he can fully participate in the community. Component 5: Monitoring Dialogue with the cliënt To what extent are goals and wishes realised? Does the person get the support he / she needs? Component 6 : Evaluation of the Individual Support Plan Measuring QOL by measuring Personal Outcomes with the POS Component 4 Implementation Those involved in the support of the person: the natural network and the professional supportworkers In the scheme of the ISP the ongoing dialogue between the person and his / her personal assistant has an explicit place in Component 1,where the focus is on the goals of the person as a starting point for an ISP, in Component 3, where the focus is on how the person wants to be supported, and in Component 5, where the focus is on whether the person gets the support he/ she needs and which brings him / her closer to his goals in life. In Component 2, where the focus is on which support the person needs and in Component 6 where the focus is on the personal outcomes, the Supports Intensity Scale and the Personal Outcomes Scale are administered, equally in a conversation with the person, by independent and trained interviewers. These interviews however are held once in a three year (SIS) or one-and-a-half year (POS) cycle. Component 1: the goals of the person The starting point for an ISP is the dialogue with the person on his wishes, goals, dreams and personal aspirations in life. Important is that we get a picture of what the person wants in his life: how he sees and dreams of his future. This is not a single conversation, but one of the central themes for an ongoing dialogue. In the application of the ISP there is a sub-application in which the personal assistant writes down what are the wishes, goals, dreams the person mentions in their meetings. This sub-application uses the format of the eight QOL-domains. To support the personal assistant in deciding where to write what wishes and goals, there is per domain an listing of SIS items corresponding with this QOL domain. This listing is based on the overview in Table 1. Table 1 QOL domains and corresponding SIS-items QOL Domain SIS item Personal Development A1 - A8 (Home Living) C1 - C6 (Lifelong Learning) Protection &Advocacy 2 Self-Determination C 8 (Lifelong Learning) Protection &Advocacy 1, 5 & 7 Interpersonal Relations B4, B7 (Community Living) D3, D4 (Employment) F1 - F7 (Social Activities) Social Inclusion B1, 2, 3, 5, 6, 8 (Community Living) F8 (Social Activities) Rights Protection &Advocacy 3, 4, 6, 8 Emotional Well-being C9 (Lifelong Learning) E8 Exceptionals Behavioral support needs Physical Well-being C7 E1 - E7 (Health and Safety) Exceptional Medical Support Needs Material Well-being D1, 2, 5, 6, 7, 8 (Employment) The person is also asked to think about the importance of each goal to get his /her prioritization. The personal assistant formulates the goal / wish within a limited number of words, and can add a clarification if necessary, as illustrated below: Component 2: the support needs of the person The support needs of the person are measured by the Supports Intensity Scale (SIS; Thompson et al., 2004). The SIS measures the type, frequency and intensity of the supports that are needed by the person. The SIS is composed of three sections: • Section 1, the Support Needs Scale, consists of 49 life activities that are grouped into six subscales:1) Home living 2) Community living 3)Lifelong learning 4) Employment 5) Health and safety and 6) Social activities • Section 2, consists of 8 items related to Protection and Advocacy Activities • Section 3, Exceptional Medical and Behavioral Support Needs, includes 15 medical conditions and 13 problem behaviours that require increased levels of support. For every item in Section 1 and 2 the type of supports, frequency and daily support time are measured. For the items in Section 3 the intensity of support is measured. The SIS interview is explicitly done with the person him/herself and his/her social network, mostly parents or other family members. A SIS interview is done with every new client by MEE, an independent Dutch organisation for social support to people with disabilities. Subsequently a SIS interview is done every three year. Arduin has, licensed by the AAIDD, developed an electronic version for the Dutch translation of the SIS. When there is a SIS-based overview of support needs, the personal assistant sits together 1) with the person to discuss what are in his / her view the most important support needs (important to the person), and 2) with the support workers to discuss what are the most important support needs in their opinion (important for the person). This prioritizing is done in the application for the ISP. Component 3: Developing an Individual Supports Plan The ISP is written by the Personal assistant within a format of the eight domains of QOL. Together with the client they synthesize the wishes and goals with the support needs and come, as an answer to these, to an idea for an individual support plan: how do I as a person want to be supported? This idea is discussed with the supportworkers /professionals and the psychologist, and as the support team they decide together on a ISP on which supports to give to the person so he can fully participate in the community. Most essential in developing these support-instructions is the ability of the support team of problem solving, or should we say the ability and creativity of finding solutions. To help the personal assistant in writing these instructions there is an overview of exemplary support strategies per QOL domain by Schalock (2014) in the application. This overview is in Table 2. Table 2 Aligning Quality of Life Domains to Potential Support Strategies and Anticipated Effects Quality of Life Domain Exemplary Support Strategies Anticipated Effects Personal Development Facilitate personal goal setting Implement self- management, self- evaluation, self-instruction programs Build on personal strengths (e.g. practical skills, social skills, successful experiences, knowledge sharing) Maximize incentives (e.g. rewards, opportunities to be successful) Implement skill development programs Provide assistive technology (e.g. communication devices, computers, memory aides, medication dispensers, med alert monitors) Modify or accommodate environments (living, work, recreation) -Facilitates motivation and internal locus of control -Enhances successful performance and increases sense of self efficacy (belief one can do it themselves) -Increases personal motivation and goal setting -Facilitates learning, independence, interactions, and communication -Increase access and use and independence Self-Determination Allow/facilitate choice and decision making Teach self-regulation Use smart technology -Facilitates internal local of control, self-esteem, and sense of empowerment -Enhances personal control Interpersonal Relations Use communication/social media devices Involve in social skills -Increases social engagement training program Involve in peer-group (e.g. PALS, Best Buddies) Maximize family involvement Emphasize personal strengths (e.g. attitudes, skills, knowledge sharing) -Increase social networks -Increases perceived societal contribution Social Inclusion Access/interface with natural supports Use social media Facilitate transportation Use prosthetics (sensory or motor devices) -Increased community access, participation, and involvement Rights Advocate for full citizenship, access, due process Involve in self-advocacy Treat with respect (e.g. privacy, recognition, dignity) -Ensures equity, inclusion, and legal rights -Maximize empowerment and inclusion -Respect human rights Emotional Well-Being Provide safe and predictable environments Maximize incentives (e.g. rewards, recognition, opportunities to succeed, acknowledgements) Use positive behavioral supports Access professional services -Reduce fear and anxiety -Increase motivation and satisfaction -Reduce challenging behaviors and increase positive interactions -Maximize mental/ behavioral health Physical Well-Being Provide prosthetics (i.e. sensory or motor enhancement devices) Implement nutritional programs Implement or increase involvement in exercise programs Access professional services -Increase sensory processing and physical mobility -Maintain weight control and encourage proper and balanced nutrition -Enhance human functioning and reduce negative effects of obesity and/or inactivity Maintain or improve medical/physical condition Material Well-Being Involve in supported employment program Provide paid sheltered workshop employment Network with generic employers -Increase economic self- sufficiency and sense of accomplishment Enroll in vocational training program Participate as a volunteer -Increase job-related skills and behaviors -Increase sense of contribution and purpose Concrete the personal assistant chooses in the application a QOL domain and he sees on his screen the wishes and goals of the person regarding this domain, ánd the corresponding support needs as expressed in SIS items, based on the format in Table 1. He then can write an instruction on how to support the person per SIS item / support need. In writing instructions in the ISP one can make the distinction between the supports for the person with regard to his ongoing support needs, and supports that have a clear objective of improving of learning. In the application one can choose for either of these. In the latter case there is a format to describe the instruction: one is asked in the application to describe the objective, the what, how, when, and who. Component 4: Implementation In this phase the ISP is implemented by those people who are involved in the supports of the person. The ISP as written by the personal assistant is a quite complete overview of the support needs of the person and which support to give per item of support need. However, based on the prioritizing by the person of his / her wishes, he himself and his legal representatives see on their screen (after login) a very compact display of the ISP. Based on the prioritizing by the person of his / her wishes ánd the prioritizing by the person and the supportworkers of the support needs, the support workers see (after login) on their screen a somewhat more elaborate, but still compact display of the ISP. This should be the information that is needed to support the person day by day. Both the person and the supportworkers can also click on the complete version of the ISP, which can be necessary in situations that one doesn’t encounter every day. In giving the support to the person it can be experienced that the instructions in the ISP are not correct or need to be adjusted. In that case it is possible to communicate this to the personal assistant so he can make the necessary adjustments. Component 5: Monitoring It is essential that an individual supports plan is monitored continuously. The question is whether the supports the person gets are appropriate: 1) does the way the person is supported help realizing his wishes, goals and personal aspirations?, and 2) are the supports the person gets an appropriate answer to his support needs? The fact that wishes are formulated in a compact way is meant to be helpful for this purpose. And in case there is are supports that have a clear objective of improving of learning, the objective, the what, how, when, and who are formulated so one can evaluate based on this. In case of the supports for the person with regard to his ongoing support needs the question is simply are they, yes or no, an appropriate answer to the support needs. Component 6: Evaluation of the Individual Supports Plan Every 1,5 years the outcomes of the supports are measured with the Personal Outcomes Scale to get an idea of changes in the quality of life-related personal outcomes. These results then are shared with the client and his / her personal assistant. They can speak on these in their ongoing dialogue and thus these results can be used to adjust and thus improve the quality of the ISP. The Personal Outcomes Scale (van Loon et al., 2008) is based on the QOL conceptual framework by Schalock and Verdugo (2002). The proper administration and use of the Personal Outcomes Scale (POS) results in the assessment of QOL indicators related to the eight core (and universal) QOL domains (Independence: Personal Development, Self- Determination, Social Participation: Interpersonal Relations, Social Inclusion, Rights, and Well-being: Emotional Well-Being, Physical Well-Being, Material Well-Being). This assessment is preferably a interview with the person (self-report) but if the person cannot speak for himself the interview is with a professional or a parent ( report by others). The POS has 6 items for each QOL domain. For comparability purposes, the content of each item is the same for the Self Report and Report by Others versions. In version 2.0 of the POS-A we added a section entitled Qualitative Comments. The interviewer uses this section to record statements from the individual as to what is important for his or her life, what personal goals does the person has for his of her life, what is needed to improve his / her quality of life, and what is needed to improve the supports the person receives. The Scale thus results in scores over the three factors and eight domains on Quality of Life, ánd in an overview of qualitative comments per QOL domain. In Figure 2 an example of a part of POS results for an individual. Figure 2. Example of part of the POS results. 4. Conclusion The use of these evidence-based outcomes includes multiple purposes in the Arduin program, with as most important purpose evaluating the outcomes of person-centred planning via an Individual Supports Plan. As the scores of the individual clients on the POS are written down in a web-application they can be depicted in several ways. The data are aggregated to give EBO information regarding the individual, organization program, or the organization as a whole. For example, the results of the POS within the Management Information System of Arduin can, at any moment in time, be depicted in raw score or percentile for each client, each program, or for the entire organization. Comparisons can easily be done between any point in time. This information is secured behind passwords, available only to authorized people within the organization. From the individual POS profiles for example a psychologist involved in the support of a person can see first the QOL profile (in raw scores), how this profile compares with the other clients of the organization (in percentile scores), and the qualitative comments. It is his task to advice the client / personal assistant on the needed supports. Also the personal assistant gets the outcome information. It is his task to discuss this with the person or legal representatives and to use this information to improve the ISP. As a second example, a manager can see the mean QOL scores for all the clients of a location (in raw scores), and what the average QOL score is of all the clients of that location in relation to the other clients of the same organization (in percentile scores). These data are important to analyse and discuss and thus can be used for quality improvement such as discussing which additional competencies are needed for the staff of this location. Third, one can see the average QOL score of all the clients of an organization (in raw scores). After more rounds of POS interviews in an organisation one can see the progression overtime, per QOL domain, per age category, per level of support needs, etc. These data are also important to analyse and discuss for developing quality improvement strategies that focus on organizational policy and change, additional competences needed by the staff in general, which courses need to be developed for clients and staff, and the determination of the significant predictors of personal outcomes. Thus, the alignment between wishes and goals, assessed support needs as measured by the SIS, Individual Supports Plan components, and quality of life outcomes as measured with the POS, creates an excellent opportunity to support people methodically in improving their quality of life. 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