Making the most of DisabilityCare Australia, the National Disability Insurance Scheme Workshop Facilitator Manual Overview Unit 1: Introduction to DisabilityCare Australia, the National Disability Insurance Scheme, 1.1 Welcome and introductions 1.2 Workshop overview 1.3 What is DisabiltyCare Australia, the National Disability Insurance Scheme? 1.4 The current recovery-oriented system for persons with a lived experience of mental illness 1.5 DisabilityCare Austrlia model of service delivery 1.6 What can be expected from DisabilityCare Australia? Unit 2: Preparing for assessment and choosing supports and services 2.1 Introduction 2.2 Effective ways to support people at different stages of recovery 2.3 What are the most important factors to consider in supporting recovery Unit 3: Supporting people to take control of their lives 3.1 Being empowered consumers 3.2 Making plans 3.3 Supporting the person as they make their goals and plans 3.4 Supporting through information and advocacy 3.5 Wrap up 2 Purpose of the workshop Aim: To develop an understanding of the proposed National Disability Insurance Scheme, DisabiltyCare Australia and develop an awareness of how to effectively access the scheme. Objectives: To gain an understanding of the why DisabiltyCare Australia is being developed To gain an understanding of what DisabiltyCare Australia entails To develop awareness of how to effectively access DisabilityCare Australia to ensure it best meets personal recovery objectives and movement towards life plans. Identify supports and resources Target group People with personal experience of caring for someone with a mental illness, who want to learn more about DisabiltyCare Australia. Additional learner needs and considerations Varied learning styles C.A.L.D. background- interpreter may be required Disability access and considerations to venue set up Learning environment Workshops will be run in meeting rooms Location needs to be accessible to local community Venue requirements - Access to whiteboard, - Access to laptop and projector preferred - Access to tea and coffee making facilities - Meets OH+S standards - Outside area for break times Operational resource requirements Org support to collate workshop resources Train nationally based facilitators to deliver workshops Liaise with organisations to support facilitator training, workshop delivery and recruitment to workshops All delivery to remain within budget (costings to be developed) Language literacy and Numeracy (LLN) requirements Workshop participants require basic reading and listening skills Style Presentation style Information giving Powerpoint slides and verbal communication Group discussion Question and answer time - group discussion 3 Unit 1: Introduction to the NDIS 1.1 Welcome and introductions 1.2 Workshop overview 1.3 What is DisabiltyCare Australia, the National Disability Insurance Scheme? 1.4 The current recovery-oriented system for persons with a lived experience of mental illness 1.5 The DisabiltyCare Australia model of service delivery 1.6 What can be expected from DisabiltyCare Australia? 1.1 Welcome and introductions PPT 1: Well Ways logo Introductions Introduce yourself, and establish your credibility by providing information such as; Are you a family member of a person living with a mental illness? Whiteboard exercise Ask the group to briefly introduce themselves and state; Their name Their relationship with the person with a mental illness What types of diagnoses have these people had? Draw the group’s attention to the similarities and differences in the relationships and diagnoses. Housekeeping Toilets Breaks Mobile phones Confidentiality Anything else? 4 1.2 Workshop overview PPT 2: Aims of the Session Aims of the session • To learn about DisabilityCare Australia, the National Disability Insurance Scheme • To explore how to prepare for DisabilityCare Australia • To reflect on how families can support practical goal setting and choosing the supports and services that will best help people achieve their life plans • To identify any supports and resources families might need 5 1.3 What is DisabiltyCare Australia? PPT 3: What is DisabilityCare Australia? Group Exercise What is DisabilityCare Australia? Group Exercise • Universal health care scheme • Comparing Medicare with DisabilityCare Australia • Exercise – list features of Medicare Notes for PPT 3 – What is DisabilityCare Australia – group exercise National Disability Insurance Schemes have been implemented in other countries in the world successfully (eg Scotland) and will be implemented here in Australia over the next few years. The first feature is: 1. Universal Health Care Scheme DisabilityCare Australia is a universal health care scheme that will allow people who have a permanent disability to be supplied with the financial means to pay for the supports that they need to have as active and fulfilling a life as possible for them at no cost to them. Whiteboard exercise Medicare is another universal health care scheme that is operational in Australia. This exercise will compare and contrast the features of the two schemes to help the group to understand how DisabilityCare Australia will work. Ask the group to list the features of Medicare, write on the white board and cross check with list below. Once this exercise is complete, fill in the right side of the table in relation to the details of DisabilityCare Australia. 6 Medicare DisabilityCare Australia Australia wide Free to all people to use Government funded through taxes Approved services only – for example dentists or chinese doctors are not available under medicare Everyone in Australia is able to use the services All types of health issues and mental health issues Operates alongside a private system Australia wide Free to all people to use Government funded Approved services only – must pass a ‘reasonable and necessary’ test (more later) Eligiblity is based on assessed need All types of disabilities including mental health Operates alongside a private system – eg private psychiatric hospitals, private psychiatrists PPT 4 – What is DisabilityCare Australia..continued What is DisabilityCare Australia, the National Disability Insurance Scheme? • Universal health care scheme • Has been implemented in other countries in the world (eg Scotland) successfully and will be implemented here in Australia over the next few years • There are many details of the NDIS still to be worked out • Focuses on those who are most in need who have a permanent disability • Focuses on intensive early intervention • The NDIS will be launched at 4 trial sites in mid 2013 7 PPT 4 Notes – Features of DisabilityCare Australia continued Universal Health care scheme (as discussed) It will focus on those most in need with a permanent disability that significantly affects their communication, mobility, self-care or selfmanagement. People will be assessed as to whether they fit the criteria to be eligible for the scheme. It will also focus on intensive early intervention in the provision of services. There is also an element to the service that will be about providing information and referral to help people with a disability that need access to mainstream disability community supports. Trialled in 2013. DisabilityCare Australia will be launched at 4 trial sites in mid 2013. These are South Australia (focusing on children with a disability), Tasmania (focusing on young people aged 15 – 24), NSW and Victoria – Barwon, (focussing on adults) . The group probably has many more questions about DisabilityCare Australia. However, before we go into the details of the program, let’s discuss the current system as it relates to mental illness and contrast it with the proposed new system. This will highlight some of the principles behind the program and will help to understand how the program will work 8 1.4 The current recovery oriented system for people with a lived experience of mental illness This system is referred to by the government departments as the Psychiatric Disability Rehabilitation and Support Services. People with mental illness most often will have been treated within the clinical system – either by GPs, Psychiatrists either in the community or in in-patient facilities. PPT 5: The current model of recovery services Current model of PDRSS service Notes to PPT 5 – The current model of recovery/rehabilitation services People with the lived experience of mental illness and their families are referred to the Psychiatric Disability Rehabilitation and Support Services and Carer Respite Services in their local catchment area for recovery support. This system includes services such as Home Based Outreach, Day Program, Personal Helpers and Mentors, Respite, Residential programs. These services provide the following types of services in the community, centre based and in people’s homes (many people in the group will be familiar with these services); 9 PPT 6: Types of services/activities offered in Psychiatric Disability Rehabilitation Support Services and Carer Respite Services Psychiatric Disability Rehabilitation Support Services & Carer Respite Services • • • • • • • • • • • Supported accommodation Community activities Learning activities Socialising activities Sporting activities Employment support Housing support Group learning Family education Personal development/recovery group learning Breaks away from caring roles PPT 7: Features of the current model Features of current model • People are only entitled to services within the region that they live • Services are funded to provide a certain number of hours of service • The types of services don’t necessarily suit everyone • Not many services have catered to the needs of people from diverse cultures Notes to PPT 7 - Features of the current model People are only entitled to services within the region that they live Can only have services within a defined area of region – cannot go out of that area if the services are full or if something they are interested in is in another area. Services are funded to provide a certain number of hours of service. As a consequence many services have long waiting times to be accepted to the service and many people aren’t getting access to services The types of services don’t necessarily suit everyone. For example, most of them are group based, and some people would like to do things on a one-to-one basis. Not many services have catered to the needs of people from diverse cultures. Therefore people from these cultures don’t have the opportunity to receive support or cultural appropriateness for their individual or family needs. 10 1.5 The DisabilityCare Australia model of service People with mental illness most often will have been treated within the clinical system – either by GPs, Psychiatrists either in the community or in in-patient facilities like in the current system PPT 8: DisabilityCare Australia model of service The DisabilityCare Australia model of service 1. Referral to DisabilityCare Australia 2. Assessment by DisabilityCare Australia • Assessment of eligibility 3. • • • • Planning and choosing services and support Form a plan of what the person wants and needs to achieve independence Must be ‘reasonable and necessary’ Establish an individual budget based on the plan Identify and access services and supports with Local Area Coordinator 4. Review process • Review outcomes of support • Changes made as needed Notes for PPT 8: The DisabilityCare Australia model of service 1. Referral to DisabilityCare Australia 2. Assessment by DisabilityCare Australia Assessment of need – may involve family/carer; may draw on existing assessments; may include specialist assessment 3. Planning and choosing services and support DisabilityCare Australia planner supports person to decide what the person wants and what services they need. This becomes a goal plan. These services are assessed as to whether they are ‘reasonable and necessary’ – to be further discussed later Establishment of individual budget Local Area Coordinator assists with identifying and accessing services and supports 4. Review process Local Area Coordinator meets person to discuss whether the support has been useful and what changes might be necessary to make in the plan. Adjustments made as needed 11 PPT 9: Features of DisabilityCare Australia model Features of the DisabilityCare Australia model • Individuals can decide what types of services they need • Individuals can choose services that are not necessarily in their local area • Individuals can choose services from mainstream providers • Individuals can choose culturally appropriate, religiously appropriate services Notes for PPT 9: Features of DisabilityCare Australia model Features of this model include: Individuals can decide in consultation with DisabilityCare Australia and family, individuals can decide what types of services they need (within the ‘reasonable and necessary ‘ confines to be discussed later) Individuals can choose services that are not in their local area Individuals are not confined to services provided within a given area Individuals have the option of seeking services from mainstream providers. For examples directly from Neighbourhood Houses, Walking Clubs and other sporting clubs, art teachers, learning institutions as well as PDRSS to receive the services that currently they can only get from PDRSS Individuals will have the option of seeking services that are culturally appropriate People will choose services that are familiar to them and who have ways of providing services that are most comfortable, and who have understandings of a particular groups’ needs, for example gay and lesbian people, the needs of a particular religious group, varying ethnic cultures. 12 PPT 10 Principles that inform DisabilityCare Australia Principles that inform DisabilityCare Australia Principles that inform DisabilityCare Australia • Individualism • Choice for the individual • Control for the individual In summary, the two models similarities and differences are represented in the next table; PPT 11 Current and DisabilityCare Australia service delivery Current vs. DisabilityCare Australia Service Delivery Current System DisabilityCare Australia system Individuals can choose from the services that are offered within the local PDRSS services and Commonwealth Respite Services for families Individuals can decide what types of services they need and from a broader range of services Local area only Individuals are not confined to services provided within a given area Services are funded to provide a certain number of hours of service Length and intensity of service is provided according to need The types of services that are available don’t Individuals have the option of seeking necessarily suit everyone services from mainstream and private providers Not many services have catered to the needs of people from diverse cultures, religious groups, varying sexuality Individuals will be able to choose to purchase what they need from ethnospecific services and those who cater to the needs of different religions and sexualities 13 1.6 What can be expected from DisabilityCare Australia Individuals can decide what they want (often in consultation with family) that will enhance their recovery. The scheme however stipulates that supports and services are both ‘reasonable’ and ‘necessary’. PPT 12: What does ‘reasonable’ and ‘necessary’ mean? What does ‘reasonable’ & ‘necessary’ mean? • Should support the individual to achieve their plans and maximize their independence • Should support the individual’s capacity to undertake the types of things that people need to do every day and to enable them to participate in the community and/or employment • Are effective, and evidence informed • Offer value for money • Should reflect community expectations, including what is realistic to expect from the individual, families and carers • Are best provided through this system rather than through other systems of service delivery and support Notes for PPT 12: What does ‘reasonable’ and ‘necessary’ mean? Should support the individual to achieve their plans and maximize their independence Should support the individual’s capacity to undertake the types of things everyone needs to do each day and to enable them to participate in the community and/or employment Are effective, and evidence informed Offer value for money Should reflect community expectations, including what is realistic to expect from the individual, families and carers Are best provided through this system rather than through other systems of service delivery and support, including services that are provided through mainstream services as a part of their universal service obligations. Small group exercise What do you understand ‘reasonable’ and ‘necessary’ to mean? What do you think are the opportunities of DisabilityCare Australia for people living with mental illness? What are the risks? What are the opportunities for families? And the risks? Feedback to large group and large group discussion. Explain to the group that the information about DisabilityCare Australia moving forward is not completely settled yet and the best place to get updated information is on the website http://www.ndis.gov.au/ Break 20 mins 14 Unit 2: Preparing for assessment and choosing supports and services 2.1 Introduction 2.2 Effective ways to support people at different stages of recovery 2.3 What are the most important factors to consider in supporting recovery 60 Minutes 2.1 Introduction Family members have an important and sensitive role in supporting people with the lived experience of mental illness make decisions about what supports and services they need. Judgement issues have to be made about how much the family support, how much they leave the decisions up to the person to be made on their own, when do they back off, how much do they back off – issues that can be grouped together as ‘dilemas of caring’. These decisions are affected by the following issues; 1. Acute through to stabilisation. Ask the group what they think this issue would have on the amount of care they need to take for their family member? If the person is more unwell, do they need to make more decisions or less? 2. Younger person as opposed to an adult person? Ask the group what impact this has on the amount of responsibility the family needs to take in supporting the decision making? 3. First episode psychosis as opposed to subsequent episodes of psychosis and hence more knowledge about mental illness? Ask the group what impact this has on the level of responsibility that the family has in supporting decision making? Discuss One of the concepts that is commonly used is the idea of moving from care-giving to care-taking which involved making the above decisions to move from ‘taking the lead’ in decision making to ‘walking side by side’ or ‘walking behind’ in decision making. Supporting people with decisions around the national disability insurance scheme will involve many of these decisions for families and carers, always keeping in mind supporting them to ultimately be more empowered to make decisions for themselve 15 PPT 13 Carers and families can help the person to take control of their support Carer support Families can help the person take control by: • Knowing what helps them manage their illness • Knowing what they want from life and what they need so they can reach their goals • Helping to find information about different options • Assisting the person to clearly communicate their choices • Knowing who else can support or advocate for the person as they choose the support / services they need to help them reach their goals 2.2 Effective ways to support people at different stages of recovery As discussed above, supporting people to take responsibility and control of their lives can be a delicate process of knowing when to step in and when to step back. Knowledge of these phases helps the families better understand their own journey and the changing level of resilience they are experiencing at different times. Most importantly, it also allows the family/carer to get insight into how their loved one is feeling and how well they are coping depending on where they are along the journey to recovery at that particular time. Small group exercise Divide the group into three smaller groups. Allocate one of the following phases of recovery to each group to consider how families and carer’s might be helpful; 1. Assessment and choosing supports and services/planning during acute illness 2. Assessment and choosing supports and services/planning during early recovery 3. Assessment and choosing supports and services/planning when recovery is well established Put the following powerpoint slide up and ask the groups to answer the following questions in relation to the stage of recovery that they are discussing. Ask each group to report back, and cross check with information provided below for each stage of recovery. Prompt the group with this information if necessary and summarise information by showing the slide at the end of each group’s conversation 16 PPT 14: Small group exercise - assessment and planning Assessment & planning • What support would be helpful for a family to provide in the assessment and planning process? • What things would the family offer? • How could the family try and ensure that the person was as involved as possible in making choices? • What would the family need to ensure they also feel supported in this process? . PPT 15: Assessment and planning during acute illness Assessment & planning during acute illness • Listen to what the person is communicating, both verbally and non-verbally – carers and families will often be able to “translate” some of the concerns and fears a person may have about the assessment and planning process • Whenever possible, attend to the person’s preferences about how meetings or conversations are conducted: e.g., the person may only be able to tolerate short conversations, or may wish to sit outside rather than inside • Draw on plans that were discussed or in place while the person was less unwell – that way their needs and choices can still be heard • Carers and family may need to take a more active and assertive role if the person’s insight and judgement is affected 17 PPT 16: Assessment and planning during early recovery Assessment & planning during early recovery • Ask the person how they would like you to support them in the process • Assist the person to access information about their rights and the options that are available to them • Encourage the person to access advice or support from peers • Resist the urge to expect too much or too little: give the person space to set their own goals and articulate their own needs • Offer messages of hope and encouragement • Notice small achievements PPT 17: Assessment and planning when recovery is well established Assessment & planning in established recovery • Encourage the person to take the lead in the process: ask if they would like your support • Respect the person’s autonomy • Offer positive feedback • Notice small and large achievements 18 2.3 What are the most important factors to consider in supporting recovery? Being asked what we want or need can be a challenging question. Many family members will say that the person they care for has no plans or goals in their life. In preparing for an assessment process, it can be helpful to begin by exploring what a “good life” might look like for the person. In simplistic terms the following are considered effective contributors to a good life: PPT 18: What makes a good life? What makes a good life? • • • • • • • • • • Feeling well Having good nutritious food that you enjoy Having regular exercise that is enjoyable Having an income Having something to do each day that is meaningful to you Adequate, secure, affordable accommodation Strong family support Good friendships and relationships A positive vision of the future life Financial support to sustain a good lifestyle In addition, research into recovery and mental illness tells us that the following factors are critical in helping people move toward recovery: 19 PPT 19: Recovery Factors Recovery factors • • • • • • • • • Acceptance of illness Hope and courage Managing symptoms Education Reconstructing identity and purpose Supporting others Choice, responsibility, control and empowerment Meaningful activity Advocacy (Pat Deegan) PPT 20: REFLECTIVE EXERCISE in pairs Reflective exercise Take a moment to reflect on what you know about the person you care for. Discuss with the other person: • What areas do you think they have made small progress in already? • What areas have they made large progress in? • What type of questions could you image using in a conversation with your family member to prompt conversation about these issues? • Which areas that we have identified do you think will be a priority for them? • Do you have ideas about what you think would be the most helpful types of support and services could be purchased for them through Disability Care Australia? Discussion Make the point that a good life can look different for everyone, and it is important that each person is able to define this for themselves. However, people with serious mental illness may not believe or have hope that they could achieve in each of these areas. It is important for carers and families to hold this hope and the expectation of a good life. 20 Unit 3: Supporting people to take control of their lives 3.1 Being empowered consumers 3.2 Making plans 3.3 Supporting the person as they make their goals and plans 3.4 Supporting through information and advocacy 3.5 Wrap up 60 Minutes Facilitator Note: For this module, you could bring in some examples of planning tools that carers and families could use to assist in having a conversation with the person about their life goals and the supports they need to achieve these. You will find these tools on the following web page http://mifellowship.org/content/well-ways-family-education-program under Wk 9 - Person Centred Planning Hanbook 3.1 Becoming empowered “consumers” The increasing shift to self-directed care programs, such as DisabilityCare Australia means that individuals are able to choose from a wider array of services and supports than have traditionally been offered them. Further, they have the flexibility to spend some of the money allocated for their care in new ways, based on an individualised plan and budget. More and more in our society, consumer power is influencing the choices people make and the level of service they expect to receive. Consumer magazines such as “Choice” provide research to help us select the best deal and tips for getting the most out of a purchase; people search reviews online, and we are influenced by the opinions we see in social media like Twitter. Systems like DisabilityCare Australia will place purchasing power directly in the hands of people with mental illness. Discussion As a group, discuss how you and the person you care for can become confident consumers/purchasers of services. As a family member/carer, what are your strengths - do you have particular skills and resources that you can draw on (e.g. good at internet research, assertive communication, understand how to access advocacy). What will you need to strengthen and what resources could you draw on to do this? 21 3.2 Making plans What encourages people to make plans is usually a strong desire to change combined with a hopeful vision for the future and a sense of what steps need to be taken. A strong desire to change; a sense of hope; and knowing what the first steps are likely to make change happen. Knowing what the first steps are is often a crucial point. Families and carers can play a key role in helping the person move from a “stuck” place where they’re not sure what they want or need, through the “contemplation” stage where they are weighing up the pros and cons of making changes and into the “action” stage where they are ready to take steps toward plans and ideas. However, it can also be difficult to know how to encourage and inspire without taking over and developing goals for the person instead of with the person. PPT 21 - Change Change • ‘You can’t change other people – you can only change yourself’ • Changes to our own communication and actions may result in more effective support for the person with the mental illness and more effective care for ourselves as carers 22 PPT 22: New strategy for carers New strategy for carers • Change in knowledge/thinking • Change in behaviour • Change in results • • • • Learning current information about mental illness Learning new communication skills De-stigmatising mental illness Learning about the biological/psychological/social model of mental illness • • • • • • • • Using new communication skills Using new assertiveness skills Considering own limits Seeking biological support if necessary Seeking psychological support Seeking social support Managing change and helpful interventions New understanding and compassion • • • • • • Recovery & hope Improved relationships Increased independence Less family stress Increased wellness Better chance of sustained recovery Notes on PPT 22: Strategies for carers, exploring need and making plans Many carers and families are keen to offer support to the person as they identify the plans that are part of their own recovery and establishing a good life. Too many of us planning as a dream about where we want to be but we don't have a map to get there. A dream is an imagined situation, but a plan is a considered, realistic and achievable destination. Making plans gives a long-term vision but needs to maintain short-term motivation, so sub plans should be set to mark smaller steps along the path to the ultimate goal. By setting clearly defined plans and sub-plans, you can monitor progress and take pride in the achievement of the all the small steps along the way. As a family member/carer it is important for you to provide appropriate positive reinforcement to acknowledge progress made even for the very small steps forward. You can have a huge impact on the person’s self-confidence as you support their goals, validate them as they learn from mistakes, and recognize their ability and growing competence to achieve their self set goals. 23 3.3 Supporting the person as they make their goals and plans In order to help our loved one we need to understand the basics of goal setting. It is helpful to start with a very broad question, such as “What does a good life look like for me?” It’s also useful to take a holistic view and consider a number of life domains rather than focussing on symptoms or mental health: PPT 23: Examples of life domains Examples of life domains • Family – How do you want your family to feature in your life? • Physical and mental – What fitness or health goals do you want to achieve? • Social - How do you want to enjoy yourself and with whom? • Creativity - Do you want to achieve any artistic or creative goals? • Work - What do you want to achieve? • Financial - How much do you want to earn, by when? How is this related to your career goals? • Education - Is there any knowledge you want to acquire in particular? What information and skills will you need to have in order to achieve other goals? • Advocacy/volunteering - Do you want to make the world a better place? Do you want to be involved in a social cause? If so, how? 24 3.4 Supporting through information and advocacy PPT 24: Being an effective advocate Being an effective advocate 1. Know what the person needs to achieve their life plans; and know what you (as a carer/family member) need to support their goals. Be ready to talk about this 2. Know about the most effective service providers and be ready to offer advice or information when required 3. Know about the rights of the person with mental illness and your rights as a carer Notes on PPT 24 - Effective Advocacy People who have a mental illness have the same rights as anyone else in the community – and if the obstacles created by illness are dealt with or removed, then they can get on with the business of enjoying life’s opportunities. Effective advocacy is underpinned by 3 things: 1. Knowledge about the topic being advocated 2. Good communication skills Improved communication skills give you the tools to get your message across to professionals in a clear way 3. Assertiveness With the benefit of both knowledge and communication skills you are in a strong position to assert what you know are your rights and explain the evidence basis for your choices Discussion What do group members need to do for themselves now? Do they feel equipped to deal with DisabilityCare Australia and supporting their family member? Do they need more support and education? Options include Well Ways Building a Future, Arafemi have some programs and there are a handful of other programs that help families develop the skills and knowledge to deal with mental illness in their families. 3.5 Wrap Up Reflect on the session – ask each members of the group to comment on the session. Hand out the evaluation form to each participant 25 26