SMS A Review of the SMM Business Model

Transcription

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