Pre- planning: Oh no, not another planning tool? Associate Professor Heidi Muenchberger Michelle Crozier Centre for Community Science Griffith Health Institute, Griffith University

Introduction – Industry Partnership – Research Aims A word about words Action Research Method Key Findings Developed Tools What’s next Questions Presentation Outline

Industry Partnership

Self-directed, client- led, peer- led, self-management, case- management, case-coordination, coordination, service delivery, brokerage, out sourcing, person-centred, personalised, service user, client, customer, consumer, decision maker, surrogate decision maker, nominee decision maker…….. Providing people the mechanisms for maximum choice and control as determined by THEM across the layers of service delivery by providing the necessary resources, supports and skills to do so. Firstly, a word about words…

First aim: Identify perspectives of people with an intellectual disability and their families to explore (1)current experiences with services (2)aspirations to self-direct (3)core skills required to self-direct Second aim: To develop an appropriate skills package or tool/s to respond to those findings. Third aim: To explore staff understandings of current service practices and concepts in terms of self-direction and service coordination for people with a disability and their families. Research Aims

Action Research Method Part 1 Ethics application Literature Review Protocol development Part 2 Interviews, Focus Groups & Staff survey (informed by focus groups and interviews) Data Analysis Part 3 Data Synthesis Tool Kit development and feedback

Quotes from people with a disability: “I am an author; I write, draw and paint… I do it on my own…I work by myself, I am my own boss” “I don’t want anybody to tell me what to do” “I would confront that person and sort it out” “I used to have a key card once…Can I get another one?” “I stay home by myself. I would rather stay home” Quotes from families “It took us a while to train the manager; we've got a new one starting next Monday. We've got to train her...” “They can't really go anywhere else, you know what I mean? They're stuck in that bind because they haven’t got choice” “…right setting, the right support, the right environment…” Findings: Current Support

Quotes from families “…can't pass off all of those things to the service provider, so we do – we still do most of those things” “Life without a package is tough” “What would be nice maybe is once I'd got it all, is to then say, this is how I want it to work, can I hand it over to you as a broker to see in the future. I take my step back… that you make sure that this is how...it operates” Findings: Self-direction

Families identified a range of skills they required or were already using – Time management (“Trying to time manage, sometimes is very difficult”). – Organisation and management (“To be able to organise and to manage”). – Decision making and evaluation skills (“One of the skills we need is the information”….”To make those judgements” and “ [Sorting out] the good guys from the bad guys”). – Implementation skills (“Putting it all into place”). – Financial skills (everyday money as well as major financial decisions) – Advocacy skills (“Advocacy is a big one”) – Skills in setting up circles of support and knowing how to ask for help. – Clarifying legal and social role as a parent, substitute decision maker, statutory health authority, guardian, information decision maker and so on. – Technology training (“How to get into the one-stop shop”). – Communication and connecting skills (“Building networks”). Findings: Skills for Self-direction

“Working with the individuals, families, staff and other stakeholders to deliver the best support for individuals in an efficient organised manner” “It doesn’t involve making all decision for the people we support and holding all the power over them” “Balancing the needs of the organisation with those of the people we support” “Communication, they are the last to be asked for opinions, they are always being told what has been changed and to accept and adapt [to] the changes” Findings: Staff Survey

"All parents should have to do this" (Parent) "It’s great...it makes you think about your role"(Parent) "A click online option would be good"(Parent) "The trunk holds a lot more issues - its important"(Parent) "....a good starting point, helps when it seems overwhelming"(Parent) Tool 1: A Decision Tree

Tool 2: A strategic planning tool to assist the organisation to make key policy decisions about their model of operation under a self- direction movement. The tool will help to identify knowledge gaps and key decisions required for developing a self-direction policy. Tool 2 - Policy Decisions

Self-reflection as a skill Lead to other PD opportunities ?minimum skill base Model coherence ?possible benchmarking approach and reporting Tool 3: Staff Skills Reflection

Down to some work… – Trial family tool kit – Staff training on use of tool kit – Trial organisational policy decision tree – Further research – Publications, conferences & plain language dissemination back to staff and families So now what?

Reports Crozier, M., Muenchberger, H., Ehrlich, C., & Coley, J. (2012). Self-directed support: A state, national and international understanding. Brisbane: Griffith University. Crozier, M., Muenchberger, H., & Colley, J. (2013). Self-directed Support: Perspectives from people with a disability, their families and staff. Brisbane: Griffith University. Publications Crozier, M., & Muenchberger, H. (2013). 'It's your problem, not mine': does competence have anything to do with desire and aspiration to self-direct? Australian Health Review, In press. Crozier, M., Muenchberger, H., Colley, J., & Ehrlich, C. (2013). 'The disability self-direction movement: Considering the benefits and challenges for an Australian response'. Australian Journal of Social Issues, accepted with minor revision. Muenchberger, H. & Crozier, M. (2013). ‘Family decision making: self-direction and service provider choice’. To be submitted Presentations: Crozier, M., & Muenchberger, H. (July 2013). ASID Twilight Research Series ‘Initial findings: perspectives from families and people.’ Current Research Outputs