Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) DisabilityCare, the National Disability Insurance Scheme Practical Design Fund Email: practicaldesignfund@fahcsia.gov.au Final Report DisabilityCare Australia, the national disability insurance Practical Design Fund 31st May 2013 NDIS Epilepsy Management Protocol for the Disability Sector This is the final report of the project detailing the original purpose and activities, achievements, findings, and outputs. Contact: Wayne Pfeiffer, General Manager Client Services Epilepsy Foundation of Victoria Phone: 03 8809 0652/ 0418 316 323 Email:wpfeiffer@ epilepsy.asn.au 1|Page Table of Contents Background .............................................................................................................................. 3 Context ...................................................................................................................................... 3 Purpose ..................................................................................................................................... 4 Project Activities ...................................................................................................................... 4 Achievements ............................................................................ Error! Bookmark not defined. Summary of Achievements ..................................................................................................... 5 Changes from proposed activities ....................................................................................... 5 1. Project Advisory Group .................................................................................................. 5 3. Survey of disability support staff .................................................................................... 7 4. Development of NDIS Epilepsy Management Protocol for the Disability Sector ............. 9 5. Publication of Self-Directed Epilepsy Management Plan & Tools ................................. 11 Appendix 1- NDIS Epilepsy Management in the Disability Sector Project Advisory Group Terms of Reference ................................................................................................................ 12 Appendix 2- Epilepsy Management in the Disability Sector: A resource for better practice ................................................................................................................................................. 15 2 NDIS Epilepsy Management Protocol for the Disability Sector Background The Practical Design Fund (PDF) is an Australian Government program that supports initiatives to identify practical ways to prepare people with disability, their families and carers, the disability sector and workforce for the transition to DisabilityCare Australia, the national disability insurance scheme, the national disability insurance scheme. The Epilepsy Foundation was funded for two projects with a total of 73 projects funded across Australia through the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA). The Epilepsy Foundation formed a partnership with Bendigo Community Health Services (BCHS) and Flinders University to pilot a national approach that supported the development of an epilepsy management protocol for the disability sector and created a self-directed epilepsy management plan and resources for people and families living with a disability to take to any disability service provider they choose. The announcement of successful projects was made in late November 2012 with a completion date set for 31st May 2013 effectively a five month period. Context FaHCSIA Program Objectives for DisabilityCare Australia is to improve the wellbeing and social and economic participation of people with disability and their carers by building a National Disability Insurance Scheme that delivers care and support through an insurance approach. The objective of the Practical Design Fund was to tap into existing sector knowledge and expertise to identify practical solutions and innovative approaches that will assist people with disability, their families and carers, the disability workforce and disability service organisations or segments of this population in managing issues of transition. Epilepsy is a common neurological condition in which a person has recurring seizures. It currently affects one in 200 Australians with approximately 4% of the population experiencing epilepsy in their lifetime. Epilepsy has a high level of comorbidity with a range of disability types requiring support from specialist organisations both to the person, or their family and to disability organisations. The Epilepsy Foundation of Victoria is the state based community service organisation supporting people living with epilepsy in Victoria and is part of the Joint Epilepsy Council of Australia. Flinders University has a reputation for excellence in teaching and research. It has a longstanding commitment to enhancing educational opportunities for all and a record of community engagement. The Bendigo Community Health Services is the primary provider of a broad range of medical, allied health and community services in the Greater Bendigo region. The Victorian Department of Human Services, Sandhurst Centre, Bendigo and Marillac Disability Services, Caulfield agreed to be a case study sites. 3 A total grant of $247,800 was provided by FaHCSIA which was managed by the Epilepsy Foundation as lead agency. A project steering group was established to guide the projects as some activities were interrelated across the two projects. Purpose To develop practical guidelines for disability service providers to support the management of epilepsy in a NDIS environment of individualised community based support. Project Activities The project was designed to build the capacity of the disability service workforce and sector organisations to manage and understand good health management in an NDIS environment with a focus on epilepsy. The project explored the role of specialist disability organisations in supporting the interface between chronic health and disability supports through epilepsy and its management. The work already underway in Victoria between the Epilepsy Foundation of Victoria, the Department of Human Services and the Victorian Disability Sector was used to form the basis of an Australian wide application providing information, resources, referral pathways, and tools to support the transition to the NDIS. The specific activities identified in the original project submission included: 1. Establishment of a project steering group to ensure the project maintained its focus, timeline and budget. 2. Review of existing models of health condition management including an examination of best practice models for health condition management in an individualized disability service environment using epilepsy as a focus. 3. Survey disability sector to assess the current level of understanding and management of epilepsy and identify the support needs of the disability sector with Ethics approval. 4. Develop and trial tools and a protocol with two case study sites and forward to other states for comment. 5. Development of a National protocol for the management of epilepsy in an NDIS environment that will support disability service providers in the transition to individualised service delivery. 6. Provide a report on project findings and presentation as required by FaHCSIA and distribute widely. 4 Achievements Summary of Achievements The project has achieved the following: Collected an evidence base for best practice epilepsy management in the disability sector and identified support requirements. Assessed the current level of epilepsy knowledge and practice within the disability sector and epilepsy management support needs Successfully trialled practical resources to support the engagement with the person with epilepsy in understanding their epilepsy and development of an epilepsy management plan. Established a national approach to epilepsy management in the disability sector including a better practice resource for families and the disability service providers Developed a self-directed epilepsy management plan and resources that supports the person with a disability and family in their selection of a suitable service provider Identified a potential evidence base for how a specialist disability organisation can function in an individualised funding environment and support the transition to an DisabilityCare not just for epilepsy but other conditions. Established tools that will assist DisabilityCare assessment processes and Local Area Coordinators and in benchmarking disability service providers. Changes from proposed activities The limited time available for the project impacted on the recruitment of disability service participants to the survey which will remain open for further recruitment and publication of results. 1. Project Advisory Group A NDIS Epilepsy Management in the Disability Sector Project Advisory Group (PAG) was established in February 2013 to advice on the delivery of the two funded projects. A broad range of representation was included in the membership as outlined below: Epilepsy Foundation Of Victoria: Janita Keating, Alison Hitchcock, Graeme Shears, Wayne Pfeiffer, Juliette Parker Bendigo Community Health Services: Kay Graves, Megan O’Keefe, Julie Priest Department of Human Services Disability Sandhurst Centre: Jenny Horner, Dean Seery Marillac Disability Services: Johanna Snellman/Jody Punchon Flinders University: Dr Michelle Bellon ABI & Neurological NDIS Interest Group: Debra Farrell (MS Australia) Joint Epilepsy Council of Australia: Robert Cole (Epilepsy Centre Sth Aust &NT) Office of the Chief Health Officer: Dr Michael Ackland People with a disability and family members were not directly involved in the project advisory group. Their involvement was thought best through surveys, individual consultations and direct involvement in the development of the epilepsy management plan and tools at key stages of the project. 5 The purpose of the PAG was to provide high quality advice in shaping the design, implementation and evaluation of the project so as to meet the needs of people with a disability and families living with epilepsy and disability service providers. Terms of reference (Appendix 1) were established with key objectives: To provide advice for the design of the project which draws upon members’ experience of the development and running of programs and of working with people with a disability and families living with epilepsy and disability service providers. To provide reflections on the project objectives, methodology, and models and tools that are developed and other evidence from the project to enable continuing improvements. The PAG has agreed to meet in six months’ time to review evaluation of the tools and project outcomes with a formal review of outcomes planned for 12 months. 2. Literature Review Dr Michelle Bellon and Researcher Alinka Thimm, Flinders University, Disability & Community Inclusion, School of Medicine, South Australia were contracted to conduct a literature review for the project. The review was completed in conjunction with Epilepsy Foundation staff Wayne Pfeiffer, General Manager Client Services, Janita Keating & Alison Hitchcock, Education and Training Managers and guidance from the project steering group. The literature review is a 36 page document which examines best practice models for health condition management for people with a disability, with a focus on epilepsy, person-centred approaches, and guidelines for self-directed epilepsy management plans. An emphasis was placed on epilepsy management which incorporates active involvement by the person in the development of the individual’s own health management plan. Section 1 summarises Australian State guidelines and regulations in epilepsy management across different sectors (accommodation, education, health, transport and other), and summarises key overseas guidelines (NICE and Scottish Intercollegiate Guidelines). Section 2 reviews health tools and models of health management in the disability sector (including the CHAP, Ask Health diary, Self-management models in Chronic Conditions, explored the role of person-centred planning in self-management, and presented principles for integrated service delivery in a 'DisabilityCare Australia' (NDIS) environment. This review revealed a range of epilepsy management guidelines which have been designed and implemented across differing sectors and organisations (including schools, accommodation, health, and community support). Although international guidelines on epilepsy management have been developed (NICE), inconsistent and uncoordinated service delivery across sectors has resulted in fragmented supports which work in isolation rather than benefiting from shared learning and research. Unfortunately, the health of people with an intellectual disability is often overlooked and poorly managed in community settings. Health assessment tools such as the CHAP have demonstrated strong positive outcomes in improving communication between GPs, their patients with intellectual disability and care-givers, increasing health promotion and health screening, and substantially increasing GP’s attention to the health needs of this population. A range of self-management programs for chronic conditions (including epilepsy), have been developed, with evaluations illustrating positive effects from increasing understanding of their 6 own condition, learning ways to manage their condition, providing peer support, strengthening partnerships and communication with health professionals, and motivating behavioural change. Health management is also seeking to keep pace with advancing technology, with new forms of electronic communication (including personally controlled electronic health records and telehealth) being trialled and debated. However, of critical concern is the extent to which people with a disability (and their family) are actively involved in making informed health decisions which impact their own lives. Personcentred planning in self-management incorporates the views and goals of the individual, ensuring decisions are made collaboratively. People with epilepsy want to be more involved in discussions about their treatment, and more actively involved in planning their seizure management. For this to succeed, ongoing staff training on the principles and techniques of person centred planning (PCP) is needed, in addition to increased epilepsy education and adoption of management guidelines and plans which support the proactive involvement of people with a disability and their family. For each of these elements to be effective within a self-managed funding environment, Australia will need to ensure integrated and continuous service delivery. If the integrated service characteristics presented in this review are adopted with the introduction of DisabilityCare Australia, the active involvement and optimum health care of people with a disability (including epilepsy) will be achieved. 3. Survey of disability support staff In order to inform the development of a national epilepsy management plan and protocol, this research sought feedback from people employed in the disability sector to gather information on how Epilepsy Management Plans are currently conducted across Australia. The research also undertook to assess the current levels of understanding and management of epilepsy and identify the support needs of disability service staff. Ethics approval granted by the Flinders University Social and Behavioural Research Ethics Committee (Project No 5965) Participants were invited to complete an 8-page electronic survey which collected information on current knowledge of epilepsy, how epilepsy is currently managed by disability service providers (do they have an epilepsy management plan, what information does it include), and how the individual and family are engaged in the process of epilepsy management, support and planning. An invitation to complete the Staff Survey and Individual & Family Survey was emailed to 30 Disability organisations across Australia (see Table 1). A further 359 service users of the Epilepsy Foundation who were identified as having a disability were invited to take part in the survey. Table 1 – Disability organisations approached to advertise surveys (n=30) Australian Federation of Epilepsy Qld National council on Intellectual Disability Organisations Disability Autism SA Epilepsy SA & NT National Ethnic Disability Alliance Brain Injury Australia Epilepsy Tasmania National Carers Carers Victoria Epilepsy WA NDS (National) Children with Disability Australia Epilepsy Foundation of Victoria NDS (NSW) Disability Advocacy Network Epilepsy Society of Australia NDS (Victoria) Australia 7 Disability Children’s Association Epilepsy Action Epilepsy Australia Epilepsy ACT First People’s Disability Network Funded Agency Channel FAHCSIA FIELD Office for the Community Sector Physical Disability Australia VALID Women with Disabilities Australia Each organization was invited to: a) advertise the surveys on their website b) forward the Staff Survey invitation to all staff members, and c) forward the Individual and Family Survey invitation to clients and families with epilepsy (if relevant). In addition, the surveys were advertised in the Big Issue in each State and Territory in each State and Territory. Criteria for participating in the survey are presented in Table 2 below. Table 2 – Criteria for survey participation Survey Individual & Family Survey Staff Survey Participation Criteria Participants will be self-selected individuals with epilepsy and family members providing support to a person with epilepsy in Australia. Criteria for participation include that they are over 18 and have sufficient English to complete a survey. Participants will be self-selected individuals currently working with people with a disability in Australia. Criteria for participation will include that they are over 18 and have sufficient English to complete a survey. Interested participants completed the survey online via Survey monkey. A total of 172 Individual & Family surveys, and 46 Staff surveys (valid) were returned by the cut-off date (5.4.13). Of the 46 staff members who completed this survey, 91% (n=42) were female. This strong gender bias is not surprising, and may be representative of the gender ratio working within the disability sector. A 43 page survey analysis report summarises all the data. The majority of respondents lived in Victoria (n=25, 54%). Although small, there were respondents from most Australian states, however no representation from ACT or NT. The majority of respondents worked in residential services (53%), closely followed by respite (47%), and community support (45%), however all other service types are represented to some degree by this sample. Eighty-nine per cent of respondents worked in professional roles (management, coordinator/ team leader or professional), with only a small percentage indicating they worked in Disability Support Work or direct care (n=5, 11%). Although 98% (n=45) of staff indicated they had received first aid training, only 71% (n=32) received epilepsy-specific training, and less than half (43%, n=19) had undergone emergency medication training for seizure control. Ninety-five per cent (n=42) of staff had received up-to-date First Aid training (within 3 years), with over half (n=22, 55%) having done so within the past 12 months. Of those who had 8 completed epilepsy-specific training, 66% (n=21) had done so within the last 3 years. In contrast, the majority of staff who had received training for emergency medications had done so longer than 3 years (n=9 45%). The majority of respondents (n=28, 70%) indicated their organisation required each client to have an Individual Health Management Plan. 82% of organisations required each client with epilepsy to have an Epilepsy Management Plan (n=32). Three quarters of respondents (n=30, 77%) indicated their organisation required staff to directly involve the person with epilepsy and their family in writing their Epilepsy Management Plan. In contrast, 5 indicated this was not a requirement (13%), and 4 were not sure (10%). Only 53% of staff (n=20) indicated that their organisation’s Epilepsy Management Plan included the views of the person with epilepsy on how they want to be supported. Just over a quarter (29%, n=11) said this was not included on their plans, with the remaining 18% (n=7) not sure. Staff indicated varying levels of challenges when supporting someone with epilepsy and confidence across all areas. The area of highest concern included ‘identifying side-effects of anti-epileptic medications’ (42% ‘sometimes’ and 11% ‘often’). The least common information included in epilepsy management plans were contact details of people involved in preparing the plan (n=21, 57%), the signature of the person with epilepsy or parent/guardian (n=24, 63%), and the endorsement/signature of the treating doctor (n=26, 68%). A range of open-ended comments were received, with feedback on a range of information that disability staff would you like to see in a comprehensive Epilepsy Management which have been directly included in the epilepsy management better practice resource protocol. Recruitment of additional disability service participants to the survey is occurring which will remain open for further recruitment and later publication of results. 4. Development of NDIS Epilepsy Management Protocol for the Disability Sector The following outputs and products have been produced and will be available on our website (www.epinet.org.au) from 23rd June 2013. See Appendix 2 for a copy of the epilepsy management protocol - Epilepsy Management in the Disability Sector: A resource for better practice. 1. Developing an Epilepsy Management Plan for support workers and families: A resource to involve the person with a disability in the development of their epilepsy plan 2. Epilepsy Management Plan templates and guidelines: An electronic document to help identify the person’s seizure types, support needs and emergency procedures 3. Emergency Medication Management Plans – Midazolam or Rectal Valium An electronic or hard copy document that identifies a specific emergency medication including dose, route and seizure type for administration 4. Epilepsy Management in the Disability Sector: A resource for better practice: Service providers can benchmark themselves against the better practice resource and identify ways to enhance the person’s support and epilepsy management 5. Education and Training for Epilepsy and Emergency Medication Administration for disability service providers 9 6. Epilepsy Help Line Fridge Magnet for disability service providers to get epilepsy support nationally The following table (Table 3) summarizes the process used to develop the Epilepsy Management Protocol for the Disability Sector which built on the Victorian experience, examined current knowledge and models and developed tools for disability support staff and organisations. Table 3- Process used to develop Epilepsy Management Protocol for the Disability Sector Dec- FebAprSummary of Development Process Jan Mar May 1. Review of Existing Models of Health Condition Management Partnerships formed with Flinders University Disability & Community Inclusion, School of Medicine. SA Partnership formed with Bendigo Community Health Services and commitment obtained from DHS Sandhurst and Marillac Services to act as trial sites. Ethics approval granted by the Flinders University Social and Behavioural Research Ethics Committee (Project No 5965) A Project Advisory Group was established to guide the project development and implementation and meet in February, March and June. Literature review examined best practice models for health condition management for people with a disability, with a focus on epilepsy, person-centred approaches, and guidelines for selfdirected epilepsy management plans. An emphasis was placed on epilepsy management which incorporates active involvement by the person in the development of the individual’s own health management plan Survey of disability service staff to understand current practices used in each Australian state and assess current levels of understanding and management of epilepsy and identification of the needs of disability service staff. 2. Development of the epilepsy management protocol - Epilepsy Management in the Disability Sector: A resource for better practice, other Tools & Trial Project Assistance staff recruited and existing EFV staff released to develop self-directed epilepsy management plan and tools 10 Epilepsy Management in the Disability Sector: A resource for better practice developed base on literature review, survey and testing. BCHS worked with DHS Sandhurst and other disability providers to test the resource and contributions were obtained from other state based epilepsy organisations. Developing an Epilepsy Management Plan for support workers and families a resource tool was developed by EFV and tested with people with a disability, families, and epilepsy and disability support staff. Epilepsy Management Plan and Emergency Medication Management Plans templates and guidelines developed by EFV electronically to help identify the person’s seizure types, support needs and emergency procedures and tested with people with a disability, families, and epilepsy and disability support staff. Epilepsy Help Line Fridge Magnet for disability staff to get epilepsy support nationally -suggested by families and disability support staff from consultation process. Education and Training for Epilepsy and Emergency Medication Administration for disability service providers to understand and manage epilepsy and support the person and family. 3. Publication of Self-Directed Epilepsy Management Plan & Tools The epilepsy management protocol - Epilepsy Management in the Disability Sector: A resource for better practice will be made available through download from EFV website http://www.epinet.org.au/articles/disabilitycare_australia_-_resources in pdf and MS Word formats with easy English resources available in audio file format for the vision impaired from 23rd June 2013. An e-newsletter will also be developed to ensure ongoing support and monitoring of the resources. Resources will be distributed directly to disability support staff through the following: DisabilityCare Australia conference stand June 23-24th Launch in DisabilityCare launch sites both in Victoria (July) and NSW (August) Promotion of the resources through peak disability organisations and newsletters Distribution of resources to Epilepsy Australia member organisations. Submission for presentation at relevant conferences/forums Publication of the literature review findings and survey data analysis is envisaged for a later date as recruitment for the survey is continuing to increase the sample size. 11 Appendix 1- NDIS Epilepsy Management in the Disability Sector Project Advisory Group Terms of Reference Terms of Reference Accepted 18th February 2013 1. Title: NDIS Epilepsy Management in the Disability Sector A. Development of an NDIS Epilepsy Management Protocol for the Disability Sector. B. Develop NDIS Self-Directed Epilepsy Management Plans for People Living with Disability. 2. Background The NDIS Epilepsy Management projects will run until 30th May 2013 will the aim of building practical solutions and tools to support the management of epilepsy with people with a disability, families and disability service providers in the transition to the NDIS. This will include: • Review of existing models of self-directed plans of health conditions, • Review level of epilepsy knowledge in disability sector and with people living with disability, • Development of a self-directed epilepsy management plan, tools and trial, • Review of existing models of health condition management, • Development of tools, protocol and trial with disability service providers, • Publication of epilepsy protocols, self-directed epilepsy management plan and tools. 3. Context A Project Advisory Group (PAG) is required to support this project, to represent a range of perspectives and to provide expert input. A separate Project Work plan has been provided to provide further detail on the context and activities of the projects. 4. Members Epilepsy Foundation: Janita Keating, Alison Hitchcock, Graeme Shears, Wayne Pfeiffer, Juliette Parker Bendigo Community Health Services: Kay Graves, Megan O’Keefe, Julie Priest DHS Disability Sandhurst Centre: Jenny Horner, Dean Seeary Marillac Disability Services: Johanna Snellman/Jody Punchon Flinders University: Dr Michelle Bellon ABI & Neurological NDIS Interest Group: Debra Farrell (MS Australia) Joint Epilepsy Council of Australia: Robert Cole Epilepsy Centre Sth Aust &NT 12 Office of the Chief Health Officer: Dr Michael Ackland Project Advisory Group Goal This PAG will provide high quality advice in shaping the design, implementation and evaluation of the project so as to meet the needs of people with a disability and families living with epilepsy and disability service providers. 5. Objectives To provide advice for the design of the project which draws upon members’ experience of the development and running of programs and of working with people with a disability and families living with epilepsy and disability service providers. To provide reflections on the project objectives, methodology, and models and tools that are developed and other evidence from the project to enable continuing improvements. 6. Relationship with Epilepsy Foundation of Victoria The PAG is auspiced by the Epilepsy Foundation and will be guided by the following provisions that govern the relationship between the Epilepsy Foundation and the PAG. The Epilepsy Foundation will: Provide administrative and executive support as required Provide a budget allocation for small expenses incurred by the PAG Arrange meetings at times and venues that are suitable to all group members (shared amongst organisations) Prepare an agenda and circulate it at least 2 days prior to meetings Identify resources and guest speakers in line with needs of the project. Ensure that the relevant website pages and associated online resources are kept upto-date Ensure a representative attends each PAG meeting Inform the PAG of the status of the project in a timely manner Recognise the work of the PAG and its members in its annual report 7. Terms of Appointment The PAG will consist of the designated membership (including Chair) and will; meet for the duration of the project January- June 2013 8. Activities The PAG members will: Meet 3-4 times as required; 13 9. Participate by face to face attendance or, where this is impractical, by teleconference / videoconference. Undertake pre-reading and specific enquiries as requested between these meetings. Chairperson The Chairperson will be a nominated representative of the Epilepsy Foundation. Chairperson’s responsibilities are to: Ensure members are notified of meetings; Invite guest speakers and subject matter experts as required. Guide the meeting according to the agenda and time available Ensure that, where required, discussion items end with a clear recommendation. Delegate as required the tasks of minute taking and secretarial support of meetings (circulation of agendas and papers, etc.) Check that the Minutes of meetings include those who attended the meeting, apologies, time, venue, duration and a brief summary of the topics covered and actions, date, time and venue for next meeting. Ensure that these Minutes are accepted by participants at the commencement of the subsequent meeting. 10. Communication All external communications relating to the affairs of the PAG should be directed to the Project Manager. No member of the PAG is permitted to speak publicly on matters relating to the PAG, Project or the Epilepsy Foundation or, in the name of the PAG, without seeking prior written permission from the Project Manager. The Project website will be managed by Epilepsy Foundation. The PAG may recommend changes to the site. In circumstances where a majority of the PAG and the Project Manager may have a difference of opinion, the PAG may provide their collective opinion to the Epilepsy Foundation, CEO. 11. Endorsement These Terms of Reference were endorsed by the Project Advisory Group by the Epilepsy Foundation, Chief Executive Officer on 18th February 2013 14 Appendix 2- Epilepsy Management in the Disability Sector: A resource for better practice Copy of pdf attached or can be downloaded from http://www.epinet.org.au/articles/disabilitycare_australia_-_resources 15