SMS A Review of the SMM Business Model

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1 Notice to readers The way in which the following report refers to Family & Community Services (FACS) Ageing, Disability and Home Care (ADHC), was correct at the time of publication. Any reference in the document to names by which ADHC was previously known (Department of Human Services, Department of Ageing, Disability and Home Care) should now be read as FACS and ADHC. If you are having difficulty accessing any of the content within the report, please contact the Research and Evaluation Unit on Version 1.0 Operational Performance Directorate Ageing, Disability and Home Care Department of Family and Community Services NSW May 2012 Final

2 EVALUATION OF THE EXPANSION OF THE SELF MANAGED MODEL IN THE COMMUNITY PARTICIPATION PROGRAM Report to Ageing, Disability and Home Care NSW Department of Human Services NSW Department of Human Services July 2010 ARTD Pty Ltd ABN Tel Fax Level 4, 352 Kent St Sydney PO Box 1167 Queen Victoria Building NSW 1230 Australia

3 Acknowledgments This work was completed with the assistance of Virginia Maguire, Emily Dempster, Kylie-Jeane Davis and Tonette Tokura from Ageing, Disability and Home Care, NSW Department of Human Services. We would also like to thank the many survey respondents, focus group and interview participants and key informants. We thank them for their time and insights and trust that their views are adequately represented in this report. ARTD Consultancy Team Sue Leahy, Narelle Ong, Consuelo de Meyrick, Ofir Thaler Evaluation of ADHC SMM expansion Page i

4 Contents Executive Summary... iii 1 Background and methods The history of the Self Managed Model Scope and objectives of the current evaluation Methods Limitations of the methods Confidence in the findings Structure of this report A note on confidentiality Choosing the SMM Finding out about the SMM Reasons for choosing the SMM Who chooses the SMM Advertising the SMM Conclusions Planning and management under the SMM Initial set-up and development of Individual Plans Individual Plans Funded Support Plans and budgeting Finding support workers Conclusion Meeting Community Participation goals in the Self Managed Model How the SMM is helping service users meet their goals Where SMM activities are taking place Activities being undertaken to meet Community Participation goals Support in meeting Community Participation goals Conclusions Service user and family satisfaction with the Self Managed Model Satisfaction with the overall SMM approach Satisfaction with SMM activities Satisfaction with their service provider Satisfaction of family members The SMM experience of those in supported accommodation Improving the SMM Conclusions Experiences of service providers in delivering the SMM Support for the philosophy of self-management Many could benefit from the self-managed approach Challenging traditional ways of working The service costs associated with the SMM Service providers support each other in managing the SMM Considering a more flexible approach to administration fees Improving understanding of the SMM amongst ADHC and Department of Education and Training staff Conclusions Summary and review of potential improvements Review of potential improvements Appendices Appendix 1: Service user survey Appendix 2: Data tables of quantitative survey responses Appendix 3: Interviews with service providers - questions Appendix 4: Interviews with service users, their parent or carer questions Evaluation of ADHC SMM expansion Page ii

5 Executive Summary ARTD Consultants was commissioned to evaluate the 2009 expansion of the Self Managed Model (SMM) of the Community Participation Program. The evaluation explored any issues in the roll-out of the initiative, and compared service users and families satisfaction with the model to that in April 2009 (when an evaluation of the pilot was undertaken). The evaluation used mixed methods, drawing on both quantitative and qualitative data. A paper-based survey was sent to all 125 service users (with 63 surveys returned). Telephone interviews were conducted with 27 service users and the five SMM service providers currently delivering the SMM. Findings Choosing the SMM Service users were introduced to the SMM in three main ways: through ADHC, through their school, or by chance (that is, by hearing about the SMM through other participating families). Service users and their families chose the SMM because they felt it would provide them with high-quality, tailored support, aligned to the service user s individual needs, interests and abilities. Service users and their families believed that the SMM would lead to increased variety and choice in the activities undertaken by the service user. Advertising the SMM Service providers, service users and their families felt the promotion of the SMM could be improved across NSW. It was felt that more user-friendly information on the SMM could be made available on the ADHC website. Information should also be made available in local newspapers, school flyers, and Centrelink disability pension material, making use of the experiences of service users and their families in using the SMM. ADHC should also ensure that families receive timely information on selfmanagement approaches, preferably when the young person is in Year 10. Current service users should also be encouraged to share their experiences with other families. Managing the SMM Under the SMM, service users and their families are required to manage their SMM budgets and support workers. Almost all families struggled with this at first, and three had expected more hands-on support from their service provider. Service users and their families felt that they should have been provided with general information on the SMM approach prior to joining, to prepare them for their role within the model, particularly on SMM guidelines and the intent and scope of SMM funding. It was also felt that budget sheets should be simplified for ease of use by families. Due to the time and skills required to manage the SMM, service users and their families believed that the model was better suited to service users who had the support of their friends and family. Service providers believed that families who had been attracted to the SMM were better educated than most on the concept of selfmanagement and individual support packages, and one provider suggested that participating families were often from high socio-economic backgrounds. However, one service provider felt that this was becoming less true as more families joined the model. Meeting Community Participation goals There is strong evidence that service users are meeting the goals outlined in their Individual Plans. As in 2009, activities undertaken to meet Community Participation goals varied greatly from person to person, and reflected their individual Evaluation of ADHC SMM expansion Page iii

6 preferences, abilities and needs. Most SMM activities are taking place in community venues such as leisure centres, community centres, local cafes and TAFE. Where activities are taking place at home, this is only when community-based options are not available or appropriate. Some users struggled to improve their social networks and participate in their community, due to the nature of their disabilities. Families reported taking small, baby steps towards these goals, with the SMM enabling them to work towards their goals in their own way and at their own pace. Satisfaction of service users and their families with the SMM Many service users and their families joined the SMM directly after leaving school, and so had not experienced other service models. However, most service users and their families were satisfied with the support provided under the SMM and felt that it was meeting their needs. Families particularly felt that they had more control within the SMM, and this was leading to a sense of empowerment. Being able to use siblings, extended family and friends to support the service user s needs was felt to be having a positive impact on family relationships. Service users were positive about their activities within the SMM, and almost all looked forward to their activities and were doing things that interested them. Service users feel they had control over the activities they undertake and are able to change their activities if they want to. Most service users and their families were happy with the support provided by their service provider. However, three service users said that they had trouble contacting their service provider and felt that it sometimes took service providers too long to make decisions (that is, on signing off their Individual Plan, or whether activities were appropriate). No difference in service provider experience was found between new and old service providers. Many families had no suggestions for improving the SMM, other than to keep doing what you are doing. However, some families wanted the SMM to be expanded to other services, such as respite, accommodation and aged care, and to have an increased funding pool for self-managed services. Other suggestions were for greater information and support in the management of the SMM program, particularly in the areas of budgeting, finding activities and support workers. The SMM experience of those in supported accommodation ARTD interviewed one service user in supported accommodation and their paid supported accommodation support worker during this evaluation. This service user and their support worker felt that the model was not working well for them as the service user required more intensive support from their Community Participation service provider in managing their activities. Experiences of service providers in delivering the SMM Service providers are passionate about the SMM and believe it could lead to positive outcomes for many of their service users. Some service providers felt that more could be done to increase the take-up of self-management, including more effective promotion of the model and providing an option of more intensive support for families. In addition, ADHC staff could play a bigger role in promoting the SMM to service users and families and in describing the benefits and limitations of the model. Service providers accepted that the SMM may not be suitable for every person with a disability, but felt that every family should be given enough information to make an informed decision ( A family shouldn t be made to feel guilty if they don t choose self-management it s about choice ). As such, it was felt that there would always be a need for other models of support. Evaluation of ADHC SMM expansion Page iv

7 New service providers outlined some difficulties in adapting service cultures, attitudes and systems to this service model. It was felt that ADHC could play a more hands-on role in preparing service providers for the impact the SMM may have on their organisational systems and processes, including direct training and service audits. Service providers noted that the level of support required by SMM families differed markedly, based on their understanding of the model and their individual capabilities, and one provider felt that funding should reflect this. Recommendations Recommendations for ADHC 1. Improve awareness and provide training to ADHC and DET staff about the SMM model and how it is delivered. 2. Provide additional and alternative methods of training to new service providers in the effective delivery of the SMM, including audits of new service providers. 3. Improve communication strategies about the SMM for potential service users. 4. Consider a more individualised method for handling administration fees. 5. Consider the level of prescription ADHC should adopt in its SMM guidelines. 6. Increase awareness for families and service providers on the intent and scope of funding. 7. Ensure further work is undertaken to include the experiences of service users living in supported accommodation and who have exited from the program in future evaluations of the SMM. 8. Use the learning s from this evaluation when considering the expansion of the SMM to other disability services, including respite and accommodation. Recommendations for SMM service providers 1. Consider ways to reduce the gap between the service provider developing the service user s Individual Plan, and starting service user s activities. 2. New service providers to ensure networking opportunities for service users and their families. 3. Allow flexibility in the level of support provided to service users to accommodate the variation in their abilities to manage the SMM. 4. Consider ways to simplify budget statements and budget management for families. 5. Consider how SMM funding and reimbursement systems can be adapted to better meet the needs of all possible service users. This should include the consideration of alternative methods of reimbursement for those with limited weekly budgets (e.g. those in supported accommodation). 6. Provide more user-friendly information for service users and families, particularly in relation to budgeting, choosing activities and finding support workers. Evaluation of ADHC SMM expansion Page v

8 1 Background and methods This chapter outlines the history of the Self Managed Model and the reasons for the current evaluation. The chapter closes with a review of the evaluation methods. 1.1 The history of the Self Managed Model The Self Managed Model (SMM) is one of three models available in the ADHC Community Participation (CP) Program. The model assists young people with a disability to develop the skills they need to work towards their goals, increase their independence and participate as valued and active members of the community. The SMM provides an alternative to two other CP models: Centre Based with Community Access (CBCA), and Individual Community Based Options (ICBO). The essence of the SMM is that the young person and their family/ advocate can choose their supports and activities and exercise control over how, when and where these activities are delivered. The young person and their families/ advocates develop an Individual Plan, detailing the activities to be undertaken to meet their goals. A service provider acts as an intermediary to facilitate this process, and provides the family with information, guidance and administration support as required. The young person is able to purchase support workers to help them undertake their activities. The support worker can be chosen by the service user, with the service provider handling the employment contract. The SMM began as a two year pilot in Two service providers, (Ability Options Ltd, and Lifestyle Solutions (Aust) Ltd) were contracted to deliver the pilot across NSW. By April 2009, 67 young people had been engaged in the model. ARTD Consultants (ARTD) was contracted to evaluate the effectiveness, efficiency and appropriateness of the pilot, to inform its future expansion. The evaluation found a high degree of satisfaction with the SMM amongst service users and their families, and it appeared effective in enabling young people to achieve their goals. Following this evaluation, ADHC expanded the model, contracting 21 additional organisations to provide this service type. As of April 2010, five of these organisations were delivering self-managed services, and 125 young people were engaged in this service type. 1.2 Scope and objectives of the current evaluation ARTD Consultants was commissioned to evaluate the expansion of the SMM. The evaluation was to explore any issues in the roll-out of the initiative, and to reassess service users and service providers satisfaction with the model. The experiences of both new and old service users and service providers were explored; ensuring views across the three new service providers were captured. The scope of the evaluation was not to compare data or experiences across the Community Participation models, although service users did comment on their experiences of other services where relevant. Evaluation of ADHC SMM Page 1

9 1.3 Methods The evaluation used mixed methods, drawing on both quantitative and qualitative data. Data collection methods were similar to those used in the 2009 evaluation, with some limitations in depth and scope Service user survey A paper-based survey was sent to all 125 services users. The survey was sent by ADHC to the service users at their home address on 21 st April 10, with a reminder sent on the 7 th May. The survey was addressed to the young person, but allowed families or carers to assist the young person in completing the survey (or to complete it on their behalf) if required. Surveys were returned directly to ARTD by 21 st May, and a reply paid envelope with ARTD s address was enclosed for this purpose. The survey repeated the questions used in 2009, with an additional question to capture the length of time service users had participated in the SMM. The survey consisted of three sections which investigated the young person s Individual and Funded Support Plans, their activities and level of support, and the benefits received from their SMM-funded activities. The survey contained three open response questions exploring the reasons the service user chose the SMM, what they liked best about it and what could be done to improve it. The remaining questions were multiple choice, using either a three-point scale (Yes; No; Not sure) or a five-point scale (Yes; A little; Not much; No; Not sure). The multiple choice scales were accompanied by symbols denoting faces with emotions ranging from happy to sad. These were used to assist comprehension for young people with intellectual disabilities. The final survey can be viewed at appendix 1. Sample and response rates The response rate to the survey was 51% (62 respondents), compared to 66% in Of the 62 respondents, 45% also completed the survey in 2009, such that 55% of the respondents were new respondents. Most survey respondents had been involved in the SMM for over 12 months (68%, see table 1.1). Table 1.1: Length of service use n Less than 6 months 6 12 months Over 12 months I have participated in the SMM for 63 25% 6% 68% * Percentages have been rounded to the nearest whole number. Total percentages may not equal 100%. n Less than 6 months 6 12 months Over 12 months I have participated in the SMM for 63 25% 6% 68% One Aboriginal family responded to this survey. 28% identified as being from Culturally and Linguistically Diverse (CALD) backgrounds. In the majority of cases, family members (63%) or advocates/ guardians (8%) completed the survey on the service user s behalf. In some instances, the service Evaluation of ADHC SMM Page 2

10 user completed the survey supported by a family member (14%), or completed the survey themselves (14%) 1. Analysis Qualitative and quantitative survey data was entered into an Excel database for analysis. Frequency analysis was used to summarise individual items. Responses of don t know were generally included in the analysis, while respondents whose responses were missing were excluded. For this reason, sample sizes vary item to item. A summary of survey responses is provided in appendix Service provider interviews Telephone interviews were undertaken with the five SMM service providers; the two existing service providers (Ability Options Ltd, and Lifestyle Solutions Limited), and three new service providers (House with No Steps, Woodville Disability Services and Disability Services Australia). The names and job titles of those interviewed are presented in table 1.2. The interviews explored the service provider s experiences of delivering the SMM and how this compared to delivering other CP models. The challenges in delivering the SMM were explored with both groups, with a focus on how these might be addressed as the model grows. The interviews also sought service providers views on the role ADHC should play in ensuring the model is achieving the best outcomes for its service users. The full interview guide is presented in appendix 3. Table 1.2: Service provider interviewees Agency Name Position Ability Options Ltd Matt Donnelly Dan Culhane Kelly Piper CEO Divisional Manager, Community Lifestyles Self Management Consultant, Self Managed Community Participation Lifestyle Solutions Ltd David Hogg Managing Director House With No Steps Southern Region Woodville Community Services Inc Disability Services Australia Judy Topper Paula Maher Danielle Gilroy Catherine Dickson Robyn Owen Operations Manager Disability Manager Case worker Director, Community Support Services & Business Improvement Regional Manager Interviews with service users, their families and guardians Telephone interviews were undertaken with 27 service users, their families and guardians. The interviews were used to investigate the experiences and outcomes of service users, families and carers under the SMM and identify current benefits and weaknesses of the model. 1 Percentages have been rounded to the nearest whole number. The percentages may therefore not total 100%. Evaluation of ADHC SMM Page 3

11 The interviewees were purposively selected from all 125 SMM service users to ensure coverage in terms of: geographic spread new and existing service users 2 service providers funding band people who identified as Aboriginal people from Culturally and Linguistically Diverse backgrounds. Interviews were arranged by phone. Families were asked the level of support the service user required to undertake the interview with us. Service users could choose to undertake the interview: alone, with the support of a parent/ carer, or to have the parent or carer speak on their behalf. Table 1.3 indicates the number of interviewees selecting each of these options. When parents/ carers undertook the interview alone they were asked to discuss the SMM with the service user prior to the interview, where possible. Table 1.3: Type of interviewees Interviewee Parent/ carer only Service user, supported by their parent/ carer Service user only 21 interviews 4 interviews 2 interviews Written notes were taken during interviews. All notes were recorded in an Access database and responses were coded to identify and analyse key themes. A note on interview data In creating this report, ADHC asked that interview data be quantified, by indicating the number of respondents who expressed a particular view. ARTD has met this request where possible and appropriate, given the nature of the data. However, it must be noted that these figures do not represent the number of interviewees who felt a particular way, but only those who expressed these feelings during the interview. In addition, ARTD only interviewed a minority of service users and their families, and so cannot be sure that these views are representative of service users as a whole. 1.4 Limitations of the methods Difficulties in contacting interviewees Of the 47 SMM service users contacted for interview, seven had incorrect or old contact numbers. Three others did not have a contact number at all. Five were noncontactable during the time of calling, despite answer phone messages being left and calling outside business hours. The difficulties in contacting SMM service users may have lead to a biased sample and under-represented certain groups Misunderstanding of survey questions The survey made reference to day programs or services in a number of its questions to provide consistent terminology across Community Participation programs. Some respondents were confused by this as they see the SMM as an 2 The decision was made not to exclude families who participated in an interview in last year s SMM evaluation. Two interviewees participated in New service users were purposively over-represented in the sample, to account for the over-representation of older SMM users in the survey data. Evaluation of ADHC SMM Page 4

12 alternative to day programs and do not associate the SMM with more traditional Community Participation service types. As such, some families changed the wording of the question to be labelled activities, and suggested that this terminology be used in future surveys Representing the views of those in supported accommodation ARTD believed that it was important to capture the views of those in supported accommodation as their experiences in the SMM may be quite different to those living with parents or carers. ARTD had not interviewed any persons in supported accommodation in the 2009 evaluation and there was a fear that their views have been under-represented. Information on service users living arrangements was not available to ARTD, making it difficult to purposively sample from this group. When contact was made, it was difficult to find someone able to consent to the service user participating in an interview. ARTD interviewed one service user in supported accommodation and their paid supported accommodation support worker in this evaluation, which indicated some marked differences to the experiences of other service users. ARTD would suggest that this demographic is explored in more depth in future evaluations of the SMM Representing the views of exited service users During the interview process, ARTD identified at least one service user who had exited from the SMM. It is worth noting that this evaluation did not obtain the views of this group. It is suggested that this demographic is explored in future evaluations to better understand their experiences. 1.5 Confidence in the findings ARTD is confident that the findings are based on sound data. The methods were successfully implemented and achieved satisfactory response rates, and there was a high degree of consistency across data sources. 1.6 Structure of this report The report describes the journey of those participating in and delivering the SMM, focusing on any changes in stakeholder experiences from Chapter 2 of this report describes how service users and their families came to hear about the SMM and the factors which affected their decision to choose it. It also outlines the possibilities for improved promotion of the model to its potential service users. Chapter 3 explores the processes involved in the planning and management of the SMM for service users and their families, including the development of Individual Plans, managing budgets, and choosing support workers. Chapter 4 looks at the activities undertaken by the service user to meet their goals under self-management. The difficulties faced by service users in meeting their goals are also explored and in particular, how self-management can help service users focus on achievable goals. Chapter 5 outlines the overall satisfaction of service users and their families in the SMM, including the support mechanisms provided to them and how the model is meeting their expectations. It also outlines potential areas for improvement. Chapter 6 considers the experience of service providers in delivering the SMM. It outlines the challenges faced by new service providers in setting-up the SMM and Evaluation of ADHC SMM Page 5

13 what has been done to overcome them. The chapter also outlines the supports ADHC can provide to improve the operational management of the SMM. The report closes with a review of the findings and a summary of potential improvements and recommendations. 1.7 A note on confidentiality Service user stories are used throughout the report to provide real examples of service users experiences of the SMM. To protect the anonymity of respondents, all names used in these stories have been changed. In order to guarantee the confidentiality of respondents, the findings, especially comments from interviews, have no identifiable features. All comments from interviews, including words and phrases interviewees used to describe their experiences and express their opinions, are presented in italics between single inverted commas italics. Evaluation of ADHC SMM Page 6

14 2 Choosing the SMM 2.1 Finding out about the SMM Service users were introduced to the SMM in three main ways; through ADHC, through their school, or by word-of-mouth. Seven service users we interviewed heard about the model during communications with ADHC or their case manager. ADHC provided these service users with a list of service providers offering the SMM. The service providers then visited the service user in their home to discuss in detail the model and how SMM may be a good option in helping to meet their needs postschool. Five service users and their families heard about the SMM through their school teachers or the education system. As service users were coming to the end of their schooling, teachers introduced them to SMM and provided them with details of service providers they could then contact. Eight service users and their families said they heard about the model by word-ofmouth, either through conversations with other families who had joined the SMM, or through their direct interaction with service providers on the services available in their area. In these cases, families often felt that they had heard about the model by chance. [Service user] had a friend who started on it [SMM] a few months before us, that s how we came across the model family member We heard about the model by chance family member 2.2 Reasons for choosing the SMM The reasons why service users and their families chose the SMM was explored in the interviews and survey. A number of reasons were given for choosing this model, including the belief that the SMM could better meet the individual needs, abilities and interests of the service user, the belief that it could offer a wide choice in the activities undertaken, the flexibility and autonomy it could bring, and the lack of other appropriate support alternatives in their local area. For many service users and their families, the SMM could provide support that they felt would better meet their needs, abilities and interests. Just under half the service users interviewed (13) had experience of centre-based services, either post-school or during their school years, and felt that the SMM could provide more tailored support. Other service users and their families researched other support options available in their area and felt that the SMM would be the most appropriate option. Families particularly liked the opportunity the SMM gave for one-to-one support. Although this was available in other Community Participation models, the SMM allowed them to have one-to-one support for all their support hours if desired. Similarly to 2009, many SMM service users joined the model because of the variety of activities the SMM afforded. Although other Community Participation models offer a large range of activities, it was felt that the SMM was better able to offer activities in a way that was aligned to the service user s unique goals, abilities and interests. Concurrent with the 2009 evaluation, a large reason for choosing to join the SMM was because of the flexibility and autonomy it offered, both in activities and supports. Evaluation of ADHC SMM Page 7

15 We understood that SMM would give us more control over what she [service user] did, hours of contact with the carer and greater flexibility for us to choose what she did and to do things that would actually benefit her and things she enjoyed doing family member A few service users chose the SMM due to the ability to undertake activities closer to home. These service users and their families described the long time taken to drive to a centre each day and the difficulty this presented if the service user then fell ill or was not happy and needed to be picked up again. 2.3 Who chooses the SMM Similar findings to the 2009 evaluation were evidenced, with those choosing the SMM being the innovators and early adopters 3. The innovators and early adopters are those who are looking for more control in managing their support and have the resources and capacity to take risks. Early adopters are families or service users who are proactive in identifying new models, have greater social networks, are better resourced and have a greater understanding of the innovation. I advocated for self-management... I was all for the philosophy of selfmanaged - family member I had read a lot about self-managed care in other countries - family member Some service users and their families interviewed felt the SMM would best suit those with sufficient support mechanisms in place to manage the SMM, and a few families felt this made the SMM more suited to those living with parents or carers. All but one service user interviewed was living with their parents or carers, and in most cases parents or carers were supporting them in managing the SMM. In the one case where the service user was not living with their parent or carer (and was living in supported accommodation), their paid support worker in supported accommodation felt that the flexibility offered under the SMM was best suited to those living with parents or carers. Service users and their families acknowledged that some parents or carers may not be in the position to support the service user in managing the SMM, or may decide that the SMM is not suited to their needs. One family member had told a friend about the SMM, but they had decided not to join the model. In this case, her son s severe behavioural problems would make her feel too anxious for the support worker s safety and she did not want to be responsible for the safety of the support worker. Some parents may not like this [SMM] as it s very daunting..., some may choose to go with other programs because it is easier for the family to manage family member As was seen in 2009, some service users and service providers felt that the SMM is more suited to people with unique characteristics due to its flexible design. I think it s [the SMM] best suited to people who have unique needs. There are a range of services available for those people whose children are more severely affected, or who have a disability such as cerebral palsy or Down Syndrome. But for people with a unique type of disorder, there is virtually nothing else Family member 3 Rogers, E M (2003) Diffusion of innovations: 5th edition New York: Free Press Evaluation of ADHC SMM Page 8

16 The SMM allows the user to have more time in the community being physically active: this is the user s strength and what he enjoys: a centre couldn t give him these opportunities. Family member Three service providers felt there was a higher representation from those in rural communities where the model is viewed as a flexible option. One service provider said they had significant uptake from northern NSW, and attributed this to the already available individual support packages offered in Queensland. Currently, 8% of SMM service users identify as being from CALD backgrounds and two service providers commented on the appropriateness of the model to suit culturally diverse groups. The flexibility in the SMM to manage and design Individual Plans enables service users of different cultures to pursue culturally appropriate activities, such as attending prayer sessions or single sex exercise groups. Two service providers are currently working on strategies to better engage those from CALD backgrounds through communication with the Multicultural Disability Advocacy Association and other multicultural centres. Currently, 3% of all SMM service users are Aboriginal. One service provider interviewed is pursuing opportunities with Aboriginal-specific services to promote the SMM. 2.4 Advertising the SMM Through interviews with service users and service providers, the advertising of the SMM was explored. As described in 2.1, some families heard about the model by chance, and many families suggested ways in which the SMM could be better promoted to all school leavers. Service users felt that advertising the SMM in the ADHC post-school programs booklet was useful, but more user-friendly information could be included on the website. One service user stated that the information online was not very clear and seemed to be aimed more at the service provider/ policy maker level. They stated that the website could be improved by including experiences of current service users, their testimonials and the type of activities they were doing. Four service users believed that word-of-mouth was the best form of advertising of the SMM. Service users noted that sharing positive experiences of the model can help other parents/ young people make the decision to join the SMM. One family member suggested that the SMM could be promoted through service user experiences written in the local community newspapers. Two family members suggested a brochure be developed incorporating information about the SMM, types of activities, information on budgeting, support workers and case studies on current service users experiences. Other suggestions from service users for advertising the SMM were through disability services and their respective magazines, including Centrelink disability pension information and through advocacy workers. Other marketing methods currently being explored by service providers are publishing editorial pieces about the model and service users experiences in newspapers and flyers provided to schools. Two service providers are looking at how better to engage those from CALD backgrounds, including the development of plain English information kits, with the possibility to translate these into other languages as the SMM expands. Evaluation of ADHC SMM Page 9

17 When service users found out about the SMM through their school, this was only months before the end of their schooling. It was felt this was not enough time to think about available options and start planning for the SMM. These families suggested that the SMM be promoted in schools earlier in the final year or even as early as Year 10, giving parents ample opportunity to learn about the model and be well prepared by the time the young person is ready to start. One parent said that the SMM is quite daunting when you first hear about it as it is quite onerous on the family. This is why parents need to be aware of the SMM as early as possible, and schools could further assist families through this transition period. 2.5 Conclusions From findings in this evaluation it is the innovators and early adopters, but also those who had strong family support systems, who are more likely to join the SMM. Similarly to 2009, current SMM service users chose the model due to its flexibility and choice of activities, enabling service users to have autonomy over their lives and do things they are interested in. Service users felt the SMM was better suited to their needs, and under the SMM they can create individualised programs tailored to suit their abilities, needs and interests. Service users and their families agreed that the SMM needed to be better promoted through ADHC and other avenues such as school and disability centres/ pensions. Word-of-mouth seemed to be a key advertising method amongst current service users. However, ADHC and SMM service providers could do more to provide potential service users with user-friendly information on the SMM, drawing on the experiences of current service users and their families. Evaluation of ADHC SMM Page 10

18 3 Planning and management under the SMM In this chapter ARTD explores the individual planning processes involved in the SMM, including the Individual Plan and the Funded Support Plan. 3.1 Initial set-up and development of Individual Plans Once registered for the SMM, service users and their family/ advocate develop an Individual Plan assisted by their intermediary service provider. The Individual Plan outlines the type of community participation supports and activities to be provided, based on the individual needs and goals of the young person. This includes the Funded Support Plan which has clear timeframes for activities, support provisions and the operational costs (up to 12%) which cover costs of the service provider, including salaries, travel and management, administration and human resources. Although the service provider is available to assist families in establishing their Individual Plans, many service users and families interviewed felt the initial set up of the SMM was a daunting experience, time-consuming and stressful. Three service users and their families did not expect to have such an active role in the initial set-up of the model, and thought the service providers would assist more in coming up with ideas for activities, in finding support workers and in managing the budget. From the interviews it was suggested that more information written in plain English be provided to families thinking about joining the SMM, including a clear explanation of the roles of service users, support workers and the service provider. Inclusion of case studies on the experiences of current service users would be helpful, as well as information on how to choose activities and the available services/ activities in their local area. Greater assistance would have been welcomed in the planning stages, particularly with budgeting and managing activities. Service users and their families interviewed did however say that once systems were in place and their plans organised, the process was a lot easier to manage. When I first got the time sheet it was overwhelming that I was responsible for filling that out. But it s not actually that difficult and I can always call the service providers if I m having any problems service user The longer I m involved the easier it is to manage survey data I was daunted by the responsibility of it all but so glad I took the plunge family member 3.2 Individual Plans As was the case in 2009, most service users said they had an Individual Plan (95%, survey data), and all agreed it would help them work towards their goals (98%). Results below show similar findings to 2009, with a high percentage (98%) of service users believing they could make changes to their Individual Plans and were involved in the development of their Plan. We were very involved in developing the Plan and they [service provider] made adjustments. Our extended family and friends also made suggestions, brainstorming for activities as they know his [service user] interests family member Evaluation of ADHC SMM Page 11

19 There were some users (8%) who reported that their service provider did not assist them in developing their Individual Plan, with 7% being unsure. The survey did not ask why they did not receive support, but through the interviews some service users and their families felt capable in developing their Plans themselves and did not request support from their service provider. Three of the families interviewed mentioned delays in either starting their activities or developing their Individual Plans. One family member said their service provider changed their mind often, and took a long time to make decisions on the activities the family proposed. The family felt these delays were a result of the lack of specific, structured guidelines. These delays were not specific to any one service provider, or to new or old service providers. Table 3.2: Service users views about their Individual Plan n Yes No Not sure I have an Individual Plan for community participation 64 95% 2% 3% My service provider has helped me to develop my Individual Plan 60 85% 8% 7% I had a say about what is in my Individual Plan 62 97% 0% 3% I can make changes to my Individual Plan if I want to 63 98% 0% 2% My Individual Plan will help me to work towards my goals I know who to contact if I have questions about my Individual Plan 63 98% 0% 2% 62 97% 2% 2% * Percentages have been rounded to the nearest whole number. Total percentages may not equal 100%. 3.3 Funded Support Plans and budgeting The majority of service users (95%) were aware they had a Funded Support Plan, however 11% of service users reported they did not receive help from their service provider to develop their budget. Feedback from the interviews indicated that many service users and their families were in fact having difficulty in managing the financial aspects of the SMM. In addition, two interviewed family members felt the service user was not receiving enough funding for their needs under their current funding band and had to supplement payment for activities out of their own pocket. This was supported by the survey data, where 27% of those surveyed felt they did not have enough money to do the activities they wanted to do. One family member interviewed had requested a review of their funding band and was awaiting a decision. Table 3.3: Service users views about their budget (Funded Support Plan): n Yes No Not sure I have a budget for my activities (Funded Support Plan) My service provider has helped me to develop my budget 62 95% 3% 2% 62 79% 11% 10% I have enough money to do the activities I want to do 62 66% 27% 6% The costs of the activities I do are reasonable 62 92% 3% 5% * Percentages have been rounded to the nearest whole number. Total percentages may not equal 100%. Evaluation of ADHC SMM Page 12

20 Two service users and their families interviewed felt there was almost too much information to absorb when joining the program, and they needed more specific information on budgeting they could take home and refer to when having difficulty. Some received little if any guidance from the service provider on how to allocate funding or assistance in managing their budget. One family member said there was no explanation on what the key areas of funding could be used for, that is special occasions, and once they spent money on an activity they thought would be suited to this area their service provider said it was too much and they were unable to move funding from one area to another if it was not all expended. Four of the service users and their families interviewed commented on the difficulties they experienced in understanding their monthly statements. This was supported by the survey data, where five respondents suggested that financial reporting could be simplified. One service user and family noted they were having problems getting paid, and their service provider was questioning the cost of activities and types of activities. Another said there was so much flexibility and limited guidelines making it difficult to manage the budget and funding allocation. Findings suggest a greater need for guidelines that explicitly relate to budgeting and financial management and the need for support to families. In both the survey and interviews, service users and their families requested assistance from their service provider in managing the budget, and suggested that there be more, easy to understand brochures and other information made available. One interview respondent suggested that individualised bank accounts are developed for SMM funding so that the families monitor their funds more easily. Service users and their families requested service providers have greater input into the budgeting process, and a few suggested service providers have a bookkeeper who could visit families to ensure they understood the finance and budgeting side of the SMM. Another family member suggested service providers supply families with a monthly balance in each activity area. 3.4 Finding support workers Under the SMM, service users and their families have the flexibility to choose their own support workers. They advertise, interview and manage their wages and therefore can choose the support worker who is going to be best suited to their needs. Almost all of those service users and families interviewed were positive about having this autonomy. I can employ my own support workers and can get the feeling if that carer is right for my lifestyle. It makes me feel empowered. service user Service users and their families looked for support workers who would be role models for the young person, who were age appropriate, had similar interests and who were experienced in working with people with comparable needs. As shown in vignette 3.1, one service user also looked for support workers who would be respectful of her lifestyle, and fit in well within it. Vignette 3.1 Finding support workers Under the SMM, Lucy* can employ her own support workers to work with her on different activities. This makes it easier for Lucy to feel more comfortable, and as she is living in the family home she looks for someone who will be respectful of this. During the interview Lucy made this clear and knew straight away whether this support worker would be right for her home and lifestyle. Being able to employ her Evaluation of ADHC SMM Page 13

21 own support workers makes Lucy feel empowered, as she feels she has more control over how her support worker meets her needs. *Names changed to protect anonymity. In some cases, service users employ several support workers either part-time or on a casual basis. This allows the family to cover sick leave and other leave entitlements. It also enables service users to have support workers for particular activities, for example speech therapist or friends, neighbours for activities such as cooking, outings in the community or painting. Families enjoyed that, through SMM, they could employ their relatives and siblings or those who had previously been providing support on a volunteer basis. [His] siblings are enjoying caring for him, they love him so they get a buzz from seeing him learn and progress and they get some funding for it. He is non verbal but as a family, they know what activities he enjoys and when he is not happy family member Some families had difficulty finding appropriate support workers who could relate to the young person, who lived close to their home or would work for the available funding. Everyone is different, but disabled people are even more different, to others and to each other. Trying to find people that they can relate to can be extremely hard family member Some service users noted a degree of difficulty when it came to paying wages to support workers and working out their leave arrangements, saying that the process had too much paperwork and was not simple to understand. This often caused families considerable stress, and in one case the family supplemented the wages of a support worker as they felt that their son/ daughter required a higher level of support than what their funding allowed. One interviewed family member said she struggled to find support workers, and in the end had to hire her brother who moved a considerable distance to support her son. Families advertised for support workers through advertisements in local papers, but almost all of the service users interviewed found their workers through word-ofmouth. Three service users were also employing family members, relatives or friends. Feedback from the interviews with service users and their families was that they would appreciate greater support from their service providers in finding suitable support workers. Four service users and their families suggested the service providers keep a pool of suitable support workers that families could access, add to and share amongst families involved in the SMM. This would help in recruiting casual support workers and cover for periods when support workers were on holiday or were unwell. 3.5 Conclusion Almost all service users and families agreed that the initial planning and set up of the SMM was daunting and could be time-consuming. Many families requested more information on how to manage the SMM, and would have appreciated greater assistance from service providers in this initial stage, particularly with planning activities, finding support workers and with budgeting. SMM service users and their families enjoyed having the autonomy to choose their support workers, and enjoyed the flexibility of being able to employ family members and friends as support workers. Some service users and their families did find it hard to find suitable support workers, and several suggested the service Evaluation of ADHC SMM Page 14

22 provider keep a pool of support workers that SMM service users could access, add to and share. Evaluation of ADHC SMM Page 15

23 4 Meeting Community Participation goals in the Self Managed Model This chapter looks at the activities undertaken by the service user to meet their goals under self-management. Difficulties faced by service users in meeting their goals are also explored, and in particular how self-management can help service users focus on achievable goals. 4.1 How the SMM is helping service users meet their goals From the survey and interview data there is strong evidence that service users are meeting the goals outlined in their Individual Plans (see table 4.1). All service users feel they are learning new things, becoming more independent, meeting new people and becoming part of the community. These figures were similar to those found in the 2009 evaluation, although those who felt they were becoming more independent (57% in 2009, 76% in 2010) and meeting new people and making new friends (61% in 2009, 77% in 2010) had increased from last year. Three service users felt that they were not being helped to move from school to adult life, however the survey did not collect data as to why the service user did not feel they were meeting this goal. It may be that the service user had left school some time ago and did not see this was a goal for them at the present time. Table 4.1: How the SMM is helping service users meet their goals n Yes A little Not much No Not sure I am learning new things 63 89% 8% 3% 0% 0% I am becoming more independent 62 76% 18% 6% 0% 0% I am doing activities that mean something to me I am meeting new people and making new friends 62 89% 10% 2% 0% 0% 63 77% 13% 9% 2% 0% I can be part of my community 62 81% 10% 10% 0% 0% I am being helped to move from school to adult life 60 82% 7% 5% * Percentages have been rounded to the nearest whole number. Total percentages may not equal 100%. 4.2 Where SMM activities are taking place Based on interviews with service users, most SMM activities are taking place in community venues such as leisure centres, community centres, local cafes and TAFE. Service users believed this was very important to fulfil their community participation goals, especially those of meeting new people and participating in their community. It is about community participation, and everything we have done has been about getting [the service user] out in the community - family member Some activities were taking place in the family home, aided by their support worker. This option was used only when community-based options were not 5% 2% Evaluation of ADHC SMM Page 16

24 available or appropriate. For example, having the option to stay at home was the preferred option in times of physical or mental ill-health, and specific activities such as grooming skills were more easily catered for in the home environment. If I don t feel like going out I can use my computer to connect with people service user In two cases, service users were also using a proportion of their SMM funds to attend centre-based programs (this was not the case in the 2009 evaluation). Under the SMM, the service users were able to attend the day program on days where the activities were of interest to them, or where they felt the program was sufficiently resourced to cater for their needs. 4.3 Activities being undertaken to meet Community Participation goals As in 2009, activities undertaken to meet Community Participation goals varied greatly from person to person, and reflected their individual preferences, abilities and needs. It was generally felt that the SMM could offer a wide range of services within the community. A summary of the activities undertaken by the service users is presented in table 4.2. Table 4.2: Activities supported by the Self Managed Model Learning and skills development Recreational activities Organised friendships and social groups Active and valued role in the community Activities TAFE courses/ Newstep Writing courses Art classes Cooking Grooming skills (at home) Driving lessons Guitar lessons Hydrotherapy Swimming Going to the gym Tandem-biking Football Basketball 10 pin bowling Concerts Darts Photography Gymnastics Cooking with friends and neighbours Visiting cafes with friends Lunch at the local pub Voluntary work Employment with support Selling art work Delivering leaflets Food shopping for the family (aided by support worker) Learning to read Visiting the library Money skills Public transport exposure Using a guide dog Massage (for physical disability) Music therapy Gymnastics Lawn bowls The zoo Gymnastics Drama Opera and jazz events Surf lessons Attending trivia nights Facebook and social networking Disability advocacy Presenting at conferences (re: disability services) General exposure to the local community All interviewed service users were engaged in activities to continue their learning and improve their life skills. For some service users this often took the form of a taught course at a mainstream educational institution such as a TAFE college. In Evaluation of ADHC SMM Page 17

25 many cases, these courses were aligned to the service user s long-term goals, such as pursuing their chosen career (see vignette 4.1). For other service users, skills development was more likely to take place in their family home or in a community centre. This might include working with their support worker on money skills or participating in local art classes. Vignette Working towards long-term goals Like many young people, Lee* was anxious about leaving school and unsure of what he wanted to do with his adult life. Lee had been interested in mechanics for a long time, and prior to joining the SMM was thinking about how he could pursue this dream. Lee did not want his family to pay for a mechanics course, as they had four other siblings to support. He was also worried about how he would cope with a mainstream course, as he was aware that it took him longer than others to learn new things. Through the SMM, Lee was encouraged to undertake a vehicle maintenance course at TAFE. It was made clear to Lee that under the SMM, he can change his activities at any time. This made Lee less nervous about taking this risk. The risk has paid off: Lee is doing really well on the course and has recently found a work experience position in his local area. If Lee is to work as a mechanic, he will need to learn how to drive. Through the SMM, Lee has been able to purchase driving lessons with an experienced driving instructor. This has really helped to improve Lee s confidence, and has made him able to connect with other young men his age. Spurred on by his success in his mechanics course, Lee is now considering a second course in business or spray painting. Lee believes that having these extra credentials will help him to stand out in his job applications. Lee has also decided to withdraw from another course he started at TAFE, as he found the content too similar to what he had learned at school. Lee does not feel ashamed or guilty about changing his mind and pursuing only those activities that are of use to him. *Names changed to protect anonymity. Service users had also chosen a number of recreational or leisure activities aligned to their interests, abilities and needs. For some service users, team sports were often chosen to expand opportunities for social interaction. In other cases, activities were chosen simply to improve their quality of life and reduce discomfort. For example, hydrotherapy was used to increase mobility, or massage to reduce pain. Expanding friendships and support networks was an area some families struggled with due to the service user s disabilities. Families reported taking small, baby steps towards this goal, such as exposure to new people in the family home (see vignette 4.2), or starting with social activities that the service user was more comfortable with (see vignette 4.3). Service users were also improving their social networks through their other SMM activities. One service user had made friends with a number of women in her art class, and another with men at the local gym. Service users often participated in less organised social activities such as going for coffee with their support worker and their friends or attending trivia nights at the local pub (see vignette 4.3). Vignette Engaging in social activities Simon* finds social situations very difficult as he finds it hard to concentrate on conversations or people. On top of this, Simon dislikes big groups of people and Evaluation of ADHC SMM Page 18

26 excessive noise, and sometimes shows aggression towards his peers. People who do not know Simon find him very difficult to deal with. Simon s family have tried to overcome this by using Simon s family environment to socialise him. Simon has visited family members (who act as support workers) and is getting used to their company/ home. Simon s family also hold a number of gettogethers with family friends, who are more accepting of Simon. *Names changed to protect anonymity. Vignette 4.3 Communication issues disabling community interaction Jane* has an acquired brain injury which affects her speech and communication skills. Jane finds it difficult to communicate with people outside her immediate family, and as such to interact with her local community. Jane wanted to interact with people of similar intellectual abilities. However, Jane does not like interacting with new people, as they assume she has an intellectual disability and Jane felt this influenced their attitudes towards her. Under the SMM, Jane attends trivia nights accompanied by her support worker. The support worker is a similar age to Jane, and is a social person who has supported Jane in meeting new people. By having a support worker who understands her speech, Jane is able to communicate with new people who realise that she is ableminded. *Names changed to protect anonymity. To improve the service user s independence, service users were doing other day-today activities in the community such as shopping, travelling to activities, using public transport and gaining confidence in using a guide dog. It was also felt that this would improve the service user s confidence in participating in the local community. Like a typical 20 year old I am able to have a variety of activities and interests in my local community survey data As most SMM activities are taking place in the community, service users and their families felt that the model was helping the service user to feel more comfortable in their local environment. Many families commented that the service user is now recognised by people in their local area, and that the service user seems to feel more at ease in their local environment. Again, this was sometimes a slow process as the service users got used to undertaking activities in new and unfamiliar environments (see vignette 4.4). As in 2009, voluntary work was a common activity. Service users were also being supported in their employment opportunities, to prepare them for paid employment. A couple of service users felt their SMM service providers could have done more to help them find appropriate work experience. One felt that the service provider made limited suggestions for work that would be aligned to her abilities. Although they were able to put her in touch with someone who may be able to help her find employment, the service user would have preferred direct support from her service provider. It was felt that the SMM should work in closer partnership with Transition to Work service providers, Centrelink and other employment services to improve their service delivery in this area. Evaluation of ADHC SMM Page 19

27 One service user was undertaking activities with other SMM service users. This was providing her with easy access to her peers, as well as contributing to her learning and skills development. This is something that could be encouraged by service providers as the model expands. Vignette 4.4 Exposure to the local community Before joining the SMM, Paul s* interaction with his local community was limited. Paul s mother was worried about how Paul would ever develop his social skills enough to be able to fulfil his dreams: of studying at university or TAFE. Through the SMM, Paul has been able to hire support workers who had worked with him previously on a voluntary basis. Working with someone familiar to Paul put him at ease. Paul s support workers were aware of the community settings which Paul was comfortable in, such as the local library. The decision was made to use this setting to improve Paul s community interaction by asking for the librarian s help to locate books, and through attending library events. Paul is slowly being exposed to other community activities such as going to a local cafe for a milkshake. Driven by his passion for computers, Paul is also being encouraged to use social networking sites and chat rooms to interact with others on the issues he cares about. Paul s mother feels that this is improving Paul s interaction with the outside world. *Names changed to protect anonymity. 4.4 Support in meeting Community Participation goals Support workers, family members and friends were supporting service users to achieve their goals. In most cases, family members and friends were acting as paid support workers, funded by the SMM. In one interview, a family member noted that the service user s families and friends were providing support on an unpaid basis to ensure that the young person was meeting their support hours (vignette 4.5). However, the young person s main guardian or carer often supported the young person in organising their SMM activities and support workers. This support was not funded by the SMM. Vignette 4.5 Exposure to the local community Christopher* was often shy and withdrawn. Christopher s family was keen that Christopher got used to being distanced from his immediate family and exposed to different communities. However, the family did not want this to cause anxiety for Christopher. The family decided that Christopher would benefit from spending time with his extended family in cities across NSW and Victoria. Under the SMM, the family was able to pay for Christopher s extended family to have Christopher in their home for the weekends. It was agreed that the family would only be paid for time that they spent undertaking one-to-one activities with Christopher to meet his CP goals. In this way Christopher could participate in new community-based activities in different locations, such as visiting the beach, visiting museums and exploring the native bushland. He is also able to increase his interaction with others without overwhelming him. *Names changed to protect anonymity. Evaluation of ADHC SMM Page 20

28 4.5 Conclusions There is strong evidence that the model is assisting young people to develop their skills and learn new things. Some service users have found it hard to build new friendships and participate in their local community; however the SMM has enabled them to work towards these goals in their own way and at their own pace. There is a wide variation in the activities undertaken through the SMM but most activities are taking place in the local community. Some activities take place in the family home, but only when community-based options are not available or appropriate. Evaluation of ADHC SMM Page 21

29 5 Service user and family satisfaction with the Self Managed Model This chapter outlines the overall satisfaction of service users and their families with the SMM, including the support mechanisms provided to them and how the model is meeting their expectations. It also outlines potential areas for improvement. 5.1 Satisfaction with the overall SMM approach In general, the SMM is meeting service users expectations. It is providing service users with flexibility, choice, autonomy and ownership, as well as a tailored and high quality support package. The following vignette, as well as those provided throughout this document, shows how the SMM leads to positive outcomes for service users. Vignette 5.2 Satisfaction with the philosophy of self-management Belinda looked into centre-based options when leaving school. Belinda believed there were no centres in the area that would accommodate her needs and interests. Belinda had high goals for her life and was keen to fulfil her dreams and aspirations. She could not see how the options available could help her lead a completely fulfilled existence. Belinda then heard about the SMM. She was immediately attracted to the model because it was not a one-size-fits-all approach. She also liked the idea that she could control where her funding went, and what she chose to do with her life. She then discussed the option with her mum, based on an in-depth discussion with her chosen service provider. Within the SMM, Belinda is pursuing her long-term goals of starting her own business and gaining a degree in law. This leaves her very little time to socialise, but the SMM allows her to employ a support worker to visit her friends. In this model, the government recognises social activities as funded hours, even if they are not accompanied by a paid carer... It s really increasing my confidence in going out alone - service user *Names changed to protect anonymity. 5.2 Satisfaction with SMM activities Service users were generally very positive about their activities within the SMM (Table 5.1). Almost all looked forward to their activities and were doing things that interested them (90%). This was confirmed by the survey data, with one family member stating that their daughter bounces out of bed to get to her activities. As indicated by both the interview and survey data, service users have control over the activities they undertake and are able to change their activities if they want to. About a third of service users (33%) felt they did not have optimal access to the activities they wanted to do in their area, and this issue was explored in the service user interviews. It was often attributed to the lack of organised activities in their area or issues concerning access (for example to buildings or interpreters), and societal attitudes towards people with a disability. Evaluation of ADHC SMM Page 22

30 A few service users (3%) believed they were not involved in activities that other people their age would do. When explored in the interviews, it was felt that this was due to their functional ability and was not related to the SMM. Table 5.1: About my activities and experiences I choose my activities, day programs and services I can change my activities, day programs or services if I want to I look forward to going to my activities, day programs or services I do interesting activities at my day programs or services I am able to do activities that other people my age do The activities I want to do are available in my area I can get to the activities I want to do at my day programs or services n Yes A little Not much No Not sure 62 92% 6% 2% 0% 0% 62 94% 6% 0% 0% 0% 63 90% 8% 2% 0% 0% 61 90% 5% 2% 2% 2% 63 75% 14% 6% 3% 2% 60 65% 23% 7% 3% 2% 59 83% 5% 3% 7% 2% * Percentages have been rounded to the nearest whole number. Total percentages may not equal 100%. 5.3 Satisfaction with their service provider Most service users and their families were happy with the support provided by their service provider. In general, service providers were easy to contact and were readily available by or phone. Many service users would appreciate greater assistance/ information on budgeting but overall they felt their service provider really understood their needs. In contrast, some service users and their families were not happy with the support provided by their service provider. Three service users said they had trouble contacting their service provider and felt that it sometimes took service providers too long (up to months) to make decisions (that is, on signing off their Individual Plan, or whether activities were appropriate). There seemed to be no difference between old and new service providers in service user dissatisfaction with their service provider. However, from the limited data available, it would seem that dissatisfied service users were those who required more intensive support in managing the SMM Experiences with new service providers ADHC were keen to understand service user experiences of the support provided by the three newer service providers. As such, ARTD undertook interviews with one service user and service provider from each of these three sites. On the whole, families were satisfied with the level of support provided by the new service providers. The service providers were professional and willing to support the families in any way they could. They were always available to the service user or their families if they required support. The service providers explained to the families that this service option was new to them. In some cases, this meant that the service provider did not have an answer to the family s questions straight away, but the service provider was quick to find the answer where possible. Although this sometimes created hold-ups for the Evaluation of ADHC SMM Page 23

31 service user, this only caused significant problems in one case. In this case, the service user had still not had their Individual Plan agreed with the service provider after having joined the program five months earlier. The service provider agreed that there had been delays in the service user beginning their activities. This was due to the service not having the structures in place to manage the SMM (see 6.3), and being unsure who was responsible for its different elements. For example, it had not been decided whether SMM funding would be managed by the service s finance team or by the service user s support person within the organisation Networking opportunities provided by service providers Some service users and their families attended workshops and conferences about the SMM and had the opportunity to meet other families. One service provider has also provided its SMM service users with contact details of other families involved in the model, and has set up a Facebook page for SMM families. It was felt that ADHC could play a bigger role in managing the coordination of these activities at the state level and in funding the SMM networking events. One service user noted that there were limited opportunities for networking with other families if using one of the three new SMM service providers, as there were only one or two families participating in their area. She suggested that families should be given the opportunity to attend networking events run by the more established SMM services. She also thought that other networking and informationsharing forums could be developed using a web-forum or the ADHC website. 5.4 Satisfaction of family members In many cases, the SMM is having a positive impact on the families of service users. Families felt they were given considerable opportunity to contribute to the service user s Individual Plan and felt that they were working in partnership with their service provider ( I feel like a consumer, not a client ). Some families felt this was quite different to their previous relationships with service providers where there was felt to be an imbalance between the client and the service provider. Service providers and service users agreed this partnership was improving relationships between families and the service provider and improving service responses. The model is respectful of families, and acknowledges we know what is best for our son/ daughters survey data We can now genuinely focus on my son s needs and interests. It has worked really well to achieve a meaningful, satisfying and purposeful adult life for my son. As a result he is happy and achieving things others had said were not possible family member Although families agreed that managing the SMM was hard work, many felt that having this level of control had empowered them as a family. They feel more in control of the service user s support and were better informed as to what the service user was doing (see vignette 5.2). It has actually enriched my life I feel more empowered than when [service user] was at school - family member The best thing about the model is the sense of empowerment it gives us as a family survey data In a couple of cases, families commented on the positive impact the SMM was having on their family life. Being able to include siblings, extended family and friends to support the service user s needs had brought families together. One Evaluation of ADHC SMM Page 24

32 family member also felt that being able to fit her son s activities around the family s other commitments had reduced disruption in their lives. The best thing about the model is that for the first time in my life, since I gave up my career for my son s needs I can finally start to build foundations for our family life family member Vignette 5.2 Satisfaction of family members Louise s* son David*is participating in the SMM. Louise heard about the SMM by chance when she saw a reference to the self-managed approach during a meeting at her son s school. The school did not know much about this support option and so Louise approached her ADHC worker about it. The ADHC worker wasn t sure what it was either, but took it upon themselves to find out more. The whole concept of self-managed services was very new to Louise and she was daunted by the concept of taking on this responsibility. However, Louise had already decided that centre-based support would not fit her son s needs and that she would have to leave her job to provide full-time support for David. If Louise was already making such a big commitment to David, she may as well give selfmanagement a try and learn some new skills along the way. Louise is very happy with the support David is getting through the SMM. But there have also been substantial gains for Louise herself. Louise is much more relaxed about David s disability, as she is not constantly worrying that he is getting the support he needs. David is non-verbal, but Louise knows better than anyone how David is responding to his support workers and the activities he is doing. Although challenging at first, Louise has enjoyed the task of managing David s SMM funds. Louise was worried about what her life would be like when she took up fulltime support of David but under the SMM she has been able to get some help from others and provide enriching activities for her and David to pursue together. I didn t ask for this for my life [to be a full-time carer]... As a carer I have often felt locked-in and like I had lost control of my life...for 20 years I ve been told what I can and can t do for [David]. Now I hold the reigns. *Names changed to protect anonymity. 5.5 The SMM experience of those in supported accommodation The experiences of one service user in supported accommodation and their paid supported accommodation support worker was gained during this evaluation. Interestingly, this service user had very different experiences of the SMM to the majority of SMM service users. Although we spoke to both the service user and their support worker during this interview, most of the feedback received came from the support worker s perspective. This service user chose the SMM because she liked the idea of trying new things. However, the service user s supported accommodation support worker felt that the service user had struggled with the flexibility provided by the SMM, as she was constantly changing her mind about what she wanted to do. When it came to funding the service user s activities, SMM approaches to reimbursement were not effective. Other service users were able to purchase items or activities as they went and to be reimbursed for this by the service provider. However, this service user received $70 a week as a living allowance, which made Evaluation of ADHC SMM Page 25

33 it very difficult for her to purchase items without immediate reimbursement. The service user suggested that her guardian be given a debit card to access her funding. The service user felt that their relationship with their support worker had broken down and she had been unable to contact her support worker. It was unclear why this situation had occurred. The service user also felt that she struggled to contact her service provider and that she was unclear whether she can call her at weekends or in the evenings. Her guardian felt that it was difficult to keep up with how often the service user contacted the service provider and what the outcomes of those conversations were. It had also taken a long time for the service provider to arrange activities, which was frustrating for the service user. Only one interview was conducted with a service user in supported accommodation, and so we cannot draw any definitive conclusions of the experiences of this group. However, given these findings, the experiences of those in supported accommodation warrants further investigation by ADHC. 5.6 Improving the SMM Many families had no suggestions for improvement, other than to keep doing what you are doing. Families were keen that the model would keep its flexibility, and for service providers to continue to be open to the families ideas. We would not change a thing! Please never change or take away this selfmanaged model family member However, a number of small suggestions were made as to how to improve the SMM in the future. These have been described throughout this report, with additional potential improvements described below SMM funding Some families felt they did not have enough funding for the activities or support they required, or were unsure about what their funding could be used for (see section 3.3). For those with intense support needs, two support workers were often needed to undertake certain activities, such as horse-riding or swimming. Those who had been involved in the SMM a long time wanted administration fees to be reduced, as they required less support from their service provider. In some cases, families were worried that they would lose their support workers if they could not provide them with enough paid hours, or enough pay. However, two families felt the SMM provided better value for money than other models, with one family saying that administration charges in other support models were higher than in the SMM Flexibility vs. structure in community goals, guidelines and activities During the interviews, an interesting divide emerged between providing flexibility and providing structure in the SMM. Three families wanted more information on the activities that could be funded by the SMM, perhaps with some examples of what other families were doing. However, three service users and their families demanded more flexibility in activities and goals. Two family members felt they should be able to fund holidays for the young person with their SMM funding, or at least pay for a support worker to accompany them. One service user felt the SMM should not have Key Results Areas, as this felt like an artificial way to run her life, and made her feel like a company, rather than a person. Evaluation of ADHC SMM Page 26

34 It is worth noting that other families were happy with the existing level of structure under the SMM, with one family member stating it s a really good blend of flexibility and structure. They have got it just right Providing self-managed options across support packages and across Australia A number of interviewees and survey respondents asked for self-managed options to be made available across disability support packages ( we would be interested in moving completely into direct payments ). It was felt that the model would be particularly amenable to respite packages, but could also be applied to accommodation packages and aged care services. Service providers agreed that expansion to other packages was a logical next step in the future of self-managed services. One service user also felt that self-managed services should be made available Australia-wide to provide equal options for families across the nation. 5.7 Conclusions Service users and their families are generally satisfied with the activities and support they receive within the SMM. Activities are enjoyed by the service users, and the support provided to them generally fits their needs. However, at times support could be improved by reducing the time taken by service providers to make decisions. The evaluation explored the experiences of one service user in supported accommodation. This service user had very different experiences of the SMM to the majority of SMM service users, and the experiences of those in supported accommodation warrants further exploration by ADHC. Although service users and their families are generally satisfied with the SMM, it was felt that the SMM could be improved by: increasing SMM funding, providing additional information on the intent and scope of SMM funding, considering the level of prescription in SMM guidelines and activities, and providing self-managed options across support packages and across Australia. Evaluation of ADHC SMM Page 27

35 6 Experiences of service providers in delivering the SMM This chapter considers the experiences of service providers in delivering the SMM. It outlines the challenges faced by new service providers in setting-up the SMM and what has been done to overcome them. The chapter also outlines the supports ADHC can provide to improve the operational management of the SMM. 6.1 Support for the philosophy of self-management It was clear that SMM service providers support the concept of self-management and feel it can derive positive outcomes for many service users. From the service providers perspective, the benefits of the model lay in its ability to provide a flexible and empowering support package, tailored to the needs, abilities and pace of the individual and their family. Service providers also noted that the SMM enables service users to modify their activities over time, which is of significant importance to young people who are only just beginning to explore what they want to do with their life. They are also able to access activities outside the realm of disability services, supporting exposure to mainstream services and communities. In this way it was felt that the SMM better responds to disability standards around choice, socialisation and the role of people with a disability in society. Service providers acknowledged the need to work in close partnerships with the service user and their families under the self-managed approach. Although a timeconsuming exercise, service providers felt this enabled them to build strong relationships with the service users and gain a solid understanding of their needs. Having an individual contract with each family was felt to empower the family and to improve their confidence and faith in the service. 6.2 Many could benefit from the self-managed approach Self-management is in its early stages in New South Wales and is currently supporting the minority of CP families. Despite this, service providers felt that selfmanagement would be an appropriate model for at least a third of all their current service users, with one service provider suggesting it would be appropriate for as many as two thirds. That the SMM was not taken up by this many families was attributed to a lack of knowledge and understanding regarding self-management; in other words: a fear of the unknown. Service providers accepted that it would take time for the SMM to reach its full potential. However, it was felt that much could be done to increase the take-up of self-management, including more effective promotion and information-sharing (see 2.4), enhanced training of disability staff (see 6.7), and providing an option of more intensive support for families (see 6.7). Service providers accepted that the SMM may not be suitable for every person with a disability and their family, but felt that every family should be given enough information to make an informed decision ( A family shouldn t be made to feel guilty if they don t choose self-management it s about choice ). As such, it was felt that there would always be a need for other models of support. Evaluation of ADHC SMM Page 28

36 6.3 Challenging traditional ways of working The SMM service providers believe self-management is the way of the future, enabling a different and innovative way of working across the system. However, it was felt that there is some way to go before the sector acknowledges selfmanagement as an option and has the processes in place to deliver it effectively. The SMM requires very different administrative and financial systems to traditional models. Financial reports must be presented on a person-by-person basis and be easy to understand (to facilitate the ease with which service users and families can manage their funds). In addition, service providers have had to think about the best ways to manage the self-managed funds with families, for example whether cheque requisition or direct bank deposits is the best method for reimbursement. The SMM was also felt to have increased service providers HR requirements as they have a legal obligation to all support workers employed by the SMM service users. As many SMM service users have multiple support workers, this can place a significant strain on HR teams, both in terms of handling their pay and supporting their training needs. These new systems and processes have led to some opposition from service staff due to additional workload and a new way of working. There has been confusion with those delivering SMM services, especially where SMM service users have some centre-based support. Centre staff have found it difficult to understand why different support of SMM service users is required, and how this type of support can work alongside more traditional services. Two new service providers suggested ADHC play a more hands-on role in preparing service providers for the impact the SMM may have on their organisational systems and processes. Although ADHC provided training to new SMM service providers, it was felt that ADHC could provide more direct training in the administration, finance and management considerations required for the SMM. Additional support could also be considered by ADHC. Suggestions included a checklist outlining what should be in place for successful self-management, and audits of all new SMM service providers, managed by ADHC, to ensure that they had considered the systems they would need in place to successfully deliver the model. 6.4 The service costs associated with the SMM Due to the changes in service culture and processes required, delivering the SMM can be quite costly to the organisation. Many families require extensive support in managing the SMM, with one service provider suggesting that only 2.7% of their administration fees go to administration, with the remaining 9.3% used for direct facilitation and support for families. New service users and families required higher levels of support than the pilot service users as they were less aware of the concept of self-management. Many service providers believed that a critical mass of service users (10-15) would provide the economies of scale to deliver the SMM more efficiently. However, the new service users believe it will be hard to achieve this critical mass in the short to medium term. Evaluation of ADHC SMM Page 29

37 6.5 Service providers support each other in managing the SMM The three new service providers have all benefited from the advice and support of the two original SMM service providers, Ability Options and Lifestyle Solutions. These services have shared a number of tools and resources including planning templates, invoicing sheets, service contracts and costing tools. These have been adapted by the new service providers to meet their needs. Both new and old service providers had called on the experience of other states to effectively deliver the SMM. This included seeking advice from past colleagues, and visiting other self-managed based service providers, such as MAMRE ( One provider has also linked with family advocacy groups and In Control Australia, who have provided a great deal of information and understanding about individualised funding packages. For some, the ADHC website has also been a source of support, particularly the community participation guidelines document and resources on person-centred approaches. Most SMM coordinators have past experience in case-management or personcentred approaches and as such have not been involved in any additional training to deliver the SMM. However, it was acknowledged that training might be required for new staff as the model grows. As such, one new service provider had made the decision to use an experienced staff member to deliver the SMM so that they would be well-placed to deliver in-house training as the model expands. Some service providers had delivered mandatory training to the support workers chosen by the service users, including OH&S training and manual handling. However, more individualised training has generally been provided by the service user and their families. One service provider is soon to roll-out an online training resource for their SMM staff, including support workers. 6.6 Considering a more flexible approach to administration fees All service providers noted that self-management required intense interaction with service users and families. However, the level of support differed markedly between families based on their understanding of the model and their individual capabilities. Due to the differences in support levels across families, two service providers felt that a flat administrative fee of 12% was unfair. One service provider suggested that there be a range of 10 15% for the operational cost components, depending on the individual service user s support needs. This might encourage service users to become more independent of the service provider so that they can reduce their administration fees. This suggestion was also made in the 2009 evaluation. It was also suggested that service providers be given permission to only allow service users to join the program every quarter. This would make SMM budgets easier to manage. 6.7 Improving understanding of the SMM amongst ADHC and Department of Education and Training staff Two of the five service providers felt that ADHC case managers and ADHC and DET post-school workers were not adequately promoting the SMM, and in some cases were discouraging families from using the model. It was felt that despite the service user s capabilities and circumstances, every family should be given the choice of self-management and that all ADHC staff should work with families to think through Evaluation of ADHC SMM Page 30

38 whether it is right for them and what can be done to support them. It was suggested that ADHC staff receive further training in the SMM. 6.8 Conclusions Service providers are passionate about the SMM and believe it could lead to positive outcomes for many of their service users. However, difficulties have been encountered in adapting service cultures, attitudes and systems to this service model. A number of suggestions have been made as to how the SMM can be improved to provide better outcomes for young people. As the model grows, ADHC may need to consider a more flexible approach to administration fees and consider a more structured approach to building awareness and understanding of the model amongst the service users and service providers of disability services. Evaluation of ADHC SMM Page 31

39 7 Summary and review of potential improvements The evaluation suggests that most service users and their families are happy with the SMM and feel it is leading to better outcomes for young people. The model is able to meet the principles of the Community Participation program, as shown below. The SMM is person-centred, with young people and their families having increased control over the activities they do. Under the SMM, service users are able to choose activities that are aligned to their individual needs, interests and abilities. The SMM is designed for young people and is able to provide a wide range of activities that are appropriate to the person s age, gender and background. The model is also providing opportunities for young people to be included in their local community and contribute to community life (genuinely inclusive). It is felt that the model is able to provide more opportunities for community participation than other models. The SMM provides flexible support which can evolve based on the young person s (and the family s) changing needs and circumstances. Service users are able to pursue culturally competent and respectful services where desired. The model is particularly useful for those living in rural and remote locations as it enables service users to choose activities within their local community. Service users and their families felt that they were working in partnership with their service provider and were in control of the young person s support package. However, it was felt that the SMM could work in closer partnership with external agencies such as Transition to Work service providers and Centrelink to improve their response to voluntary work and employment. Many families believe that the SMM is a cost effective option, as it is able to provide tailored, one-to-one support for the service user. However, some families felt that they did not have enough money to fund the activities they wanted to do. 7.1 Review of potential improvements Despite service users and their families satisfaction with the model, there was felt to be a number of ways that the model could be improved. These encompass suggestions for ADHC and for the SMM service providers. Recommendations for ADHC 1. Improve awareness and provide training to ADHC and DET staff about the SMM model and how it is delivered. 2. Provide additional and alternative methods of training to new service providers in the effective delivery of the SMM, including audits of new service providers. 3. Improve communication strategies about the SMM for potential service users. 4. Consider a more individualised method for handling administration fees. 5. Consider the level of prescription ADHC should adopt in its SMM guidelines. Evaluation of ADHC SMM Page 32

40 6. Increase awareness for families and service providers on the intent and scope of funding. 7. Ensure further work is undertaken to include the experiences of service users living in supported accommodation and who have exited from the program in future evaluations of the SMM. 8. Use the learning s from this evaluation when considering the expansion of the SMM to other disability services, including respite and accommodation. Recommendations for SMM service providers 1. Consider ways to reduce the gap between the service provider developing the service user s Individual Plan, and starting service user s activities. 2. New service providers to ensure networking opportunities for service users and their families. 3. Allow flexibility in the level of support provided to service users to accommodate the variation in their abilities to manage the SMM. 4. Consider ways to simplify budget statements and budget management for families. 5. Consider how SMM funding and reimbursement systems can be adapted to better meet the needs of all possible service users. This should include the consideration of alternative methods of reimbursement for those with limited weekly budgets (e.g. those in supported accommodation). 6. Provide more user-friendly information for service users and families, particularly in relation to budgeting, choosing activities and finding support workers. Evaluation of ADHC SMM Page 33

41 8 Appendices Appendix 1: Service user survey HELLO IN THIS ENVELOPE YOU WILL FIND A SURVEY THAT HAS A LIST OF QUESTIONS ABOUT SUPPORT YOU RECEIVE The questions ask you about the Self Managed Model that you are involved with as part of the NSW Department of Disability, Ageing and Home Care (DADHC) Community Participation program. Everyone who is part of the Self Managed Model has been asked to complete this survey. You can choose whether or not you would like to answer the questions, but we would really like to know what you think. YOUR ANSWERS ARE IMPORTANT TO US The survey will give you a chance to say what is working well for you as part of the Self Managed Model. It will also give you the chance to suggest how to make it better. Each survey has a number. This lets us know which surveys have been returned. Your service providers will not know if you responded to this survey. Your name and answers will be confidential. Reports from this survey will not talk about you or any other individual person. THE SURVEY SHOULD TAKE ABOUT 15 MINUTES TO COMPLETE Try to answer the survey on your own, or together with your family, carer or someone you know and trust. If you feel like you can t answer the survey, then your family or carer can complete it for you. The questions are about what you think about the Self Managed Model. If a family member or carer is filling out the survey for you, they should really think about what you want or need from the model. Please place the survey in the Reply Paid envelope and return to ARTD by the date below. ARTD will also interview some Self Managed Model user families to explore how the model is working. Not everyone will be asked to participate in an interview but if you do not wish your contact name and details to be provided to ARTD for this purpose please call Emily Dempster at Ageing, Disability and Home Care on (02) or [email protected] by 1 May PLEASE RETURN THE SURVEY BY THIS DATE 12 MAY 2010 No stamp required if you use this address: ARTD Pty Ltd Reply Paid 1167 Queen Victoria Building NSW 1229 Evaluation of ADHC SMM Page 34

42 If you have any questions about this survey, please contact Consuelo de Meyrick at ARTD Consultants on (02) or YOUR INDIVIDUAL PLAN AND FUNDED SUPPORT PLAN In this section, we would like to learn about how happy you are with your Individual Plan and Funded Support Plan for your Self Managed Model. My Individual Plan: Tick one box for each question Yes! No! Not sure I have an Individual Plan for community participation My service provider has helped me to develop my Individual Plan I had a say about what is in my Individual Plan I can make changes to my Individual Plan if I want to My Individual Plan will help me work towards my goals I know who to contact if I have questions about my Individual Plan My Budget (Funded Support Plan): Tick one box for each question Yes! No! Not sure I have a budget for my activities (Funded Support Plan) My service provider has helped me develop my budget (Funded Support Plan) I have enough money to do the activities I want to do The costs of the activities I do are reasonable Why did you choose the Self Managed Model? Evaluation of ADHC SMM Page 35

43 ACTIVITIES AND SUPPORT In this next section, we want to know about the activities you do and the support you get in your Self Managed Model. About the activities I do: Tick one box for each question. Tick the box under the face that shows how you feel about each question. Yes! A little Not much No! Not sure I choose my own activities, day programs and services I can change my activities, day programs or services if I want to I look forward to going to my activities, day programs or services I do interesting activities at my day programs or services I am able to do activities that other people my age do The activities I want to do are available in my area I can get to the activities I want to do at my day programs or services About my day programs/ services I use: Tick one box for each question. Tick the box under the face that shows how you feel about each question. Yes! A little Not much No! Not sure The people at my day programs or services listen to my needs The people at my day programs or services help me when I have questions I like the way I am treated at my day programs or services About my support: Tick one box for each question. Tick the box under the face that shows how you feel about each question. Yes! A little Not much No! Not sure My family/ carer or support person helps me to plan my day activities My family/ carer or support person helps me to attend my day activities Evaluation of ADHC SMM Page 36

44 BENEFITS FROM ACTIVITIES In this section, we want to know whether the activities you are involved in are helping you. In my activities... Tick one box for each question. Tick the box under the face that shows how you feel about each question. Yes! A little Not much No! Not sure I am learning new things I am becoming more independent I am doing activities that mean something to me I am meeting new people and making new friends I can be part of my community I am being helped to move from school to adult life What do you like best about the Self Managed Model? What would make the Self Managed Model better? Your background: Tick one box for each question. Yes No Not sure I am an Aboriginal person I speak a language other than English at home What other languages do you speak? Evaluation of ADHC SMM Page 37

45 Length of service use: Tick one box only. Less than 6 months 6-12 months Over 12 months I have participated in the Self Managed Model for Who completed this form? Tick all that apply. Service user (me) Family member Advocate/ guardian END OF SURVEY Thank you for completing the survey. This will help us make your services better. Please put the completed survey in the envelope and post back to ARTD (see page 1 for details). Evaluation of ADHC SMM Page 38

46 Appendix 2: Data tables of quantitative survey responses NB: All figures have been rounded to the nearest whole number. As such, total percentages may exceed 100%. Service users views about their Individual Plan n Yes No Not sure I have an Individual Plan for Community Participation 64 95% 2% 3% My service provider has helped me to develop my individual Plan 60 85% 8% 7% I had a say about what is in my Individual Plan 62 97% 0% 3% I can make changes to my individual Plan if I want to 63 98% 0% 2% My Individual Plan will help me to work towards my goals I know who to contact if I have questions about my individual Plan 63 98% 0% 2% 62 97% 2% 2% Service users views about their Funded Support Plan n Yes No Not sure I have a budget for my activities (Funded Support Plan) My service provider has helped me to develop my budget 62 95% 3% 2% 62 79% 11% 10% I have enough money to do the activities I want to do 62 66% 27% 6% The costs of the activities I do are reasonable 62 92% 3% 5% Service users views about their activities n Yes A little Not much No Not sure I choose my activities, day programs and services I can change my activities, day programs or services if I want to I look forward to going to my activities, day programs or services I do interesting activities at my day programs or services I am able to do activities that other people my age do The activities I want to do are available in my area I can get to the activities I want to do at my day programs or services 62 92% 6% 2% 0% 0% 62 94% 6% 0% 0% 0% 63 90% 8% 2% 0% 0% 61 90% 5% 2% 2% 2% 63 75% 14% 6% 3% 2% 60 65% 23% 7% 3% 2% 59 83% 5% 3% 7% 2% Evaluation of ADHC SMM Page 39

47 Service users views about the services they use n Yes A little Not much No Not sure The people at my day programs or services listen to my needs The people at my day programs or services help me when I have questions I like the way I am treated at my day programs or services 55 91% 7% 0% 2% 0% 55 87% 11% 0% 2% 0% 55 93% 4% 0% 0% 4% Service users views about their support n Yes A little Not much No Not sure My family/ carer or support person helps me to plan my day activities My family/ carer or support person helps me to attend my day activities 62 92% 3% 2% 3% 0% 62 95% 3% 0% 2% 0% Meeting their community participation goals n Yes A little Not much No Not sure I am learning new things 63 89% 8% 3% 0% 0% I am becoming more independent 62 76% 18% 6% 0% 0% I am doing activities that mean something to me I am meeting new people and making new friends 62 89% 10% 2% 0% 0% 63 77% 13% 9% 2% 0% I can be part of my community 62 81% 10% 10% 0% 0% I am being helped to move from school to adult life 60 82% 7% 5% 5% 2% Service users background n Yes No Not sure I am an Aboriginal person 62 3% 97% 0% I speak a language other than English at home 61 23% 77% 0% Length of service use n Less than 6 months 6 12 months Over than 12 months I have participated in the SMM for 63 25% 6% 68% Who completed the survey Service user alone Service user supported by family member Family member alone Advocate/ guardian alone N (%) 9 (14%) 9 (14%) 40 (63%) 5 (8%) Evaluation of ADHC SMM Page 40

48 Appendix 3: Interviews with service providers - questions 1. What do you think is different about the SMM compared to the other CP models? o Prompt: Other models of support are Individual Community Based Options or Centre Based with Community Access. 2. What are the positive aspects of the model? 3. What have been the key challenges in establishing the model, and what are the aspects of the model that need improvement? 4. What tools/ resources/ contacts have helped you to become a provider of the SMM? 5. Are there some key characteristics that are common to the young people who choose this model? o Prompt: Rural/ urban access issues? Under-representation of particular groups, that is CALD, Aboriginal, living with parents or carer. 6. Where do the majority of service user activities take place in the SMM? Can you please provide examples of these activities? 7. What training and development initiatives are in place for staff and how is this funded? 8. Some providers have suggested that the initial planning stage can be quite intense. What s your perception about this? What strategies have you introduced to make this process easier? 9. Are there any operational considerations ADHC should investigate further to ensure that the model is achieving the best outcomes for service users? o Prompt: OHS considerations, funding levels, program guidelines, training and support for staff, service users and families. 10. Any other comments regarding the SMM? Evaluation of ADHC SMM Page 41

49 Appendix 4: Interviews with service users, their parent or carer questions 1. Why did you choose to join the Self Managed Model? Prompt: Why did you choose this over other service models? Who helped you make the decision (ADHC Regional Staff, family, service providers, friends, other?) Did you have access to adequate information about the SMM and possible service providers? 2. How did you first hear about the SMM? Prompts: How could the SMM be better advertised to ensure it is promoted to potential users? 3. Is the SMM meeting your original expectations (If no prior expectations, ask what do you like about the SMM? ) Prompt: Has it given you more choice/ flexibility? Do you like the activities you do? Have you been involved in developing your Individual Plan? Have you chosen the activities you get to do? Best thing (if not prompted). 4. Is there anything about the model that you don t like? Prompts: What could make this better? Is there anything that isn t working well? 5. Has the model helped you meet the goals for community participation (explore examples)? Prompts: What were your goals? Has the model helped you learn new things? Be more independent? Meet new people? Feel part of the community? What are the barriers? Explore time spent at home and out in the community. 6. What has the relationship been like between you and your intermediary service provider? Prompts: How have they helped you? How could they improve the support they provide? Comparison to past support mechanisms. Any other comments regarding SMM? For carers 7. Are you happy with the level of involvement and support you have had in the Self Managed Model? Who assisted the person you support to choose the SMM? Prompts: Time consuming? Could this be a problem for other parents? Evaluation of ADHC SMM Page 42