1. NSW COMMUNITY OPTIONS PROJECTS INC MND Mapping Project and Funding

2. There are two parts:  Episodic Case Management & Brokerage Services  Mapping Project

3. MND Episodic Case Management and Brokerage Funding  Available funds - $170,000.00 total  $1,500 maximum per episode of case management  Episodic case management time frame – 6 weeks  To be eligible, all other avenues must be fully explored  Simple to apply for  Simple to receive funds  No further reporting requirements

4. Applying for MND Episodic Funds  Your service completes assessment and estimates what services are required  You apply for services via normal avenues  You verify that all other avenues are explored  You send us a detailed invoice showing services and $ required  We deposit the money into your bank account  We take the service provision data from your invoice – no further reporting necessary from you!

5. Mapping Project Outline  The Mapping Project will document the service provision landscape and the journeys of people living with MND as they move through that landscape.  The purpose of documenting these journeys is to translate the anecdotal stories of individuals into comparative data.  The MND Mapping Project will include information on: service type availability, service providers, service provider decision making points in relation to the provision of services and the journeys of ten (10) people living with MND and their carers.

6. Mapping Project Outline  The MND Mapping Project will provide online data collection points so that no stories are ‘lost’ – this includes stories from service providers, carers etc  The data will provide information on the responsiveness and effectiveness of the community case management model and will assist NSW COPS and MND NSW in the review of pathways of care and support for people living with MND

7. The MND Mapping Project will follow the journey of ten (10) people living with MND and their carers  The mapping will document:  their experience of the MND landscape  their personal assessment of the appropriateness and responsiveness of service provision  their insights into what ‘would have’ or ‘what did’ make a positive difference

8. The MND Mapping Project will provide an online story collection points for all persons on the map  Quick and easy – via web  Story driven – no need to spend time ‘polishing’  Event driven – no need to document more than necessary

9. Collecting your stories  Service Provision Data is already generated from invoices – no need to tell this part of the story again  However, we also want YOUR part of the story  We will collect them online – via simple survey  What do we want?  Your Reflections on  The story of your experience  The story of your service provision difficulties  The story of what made ‘a difference’  The story of what did not go so well...

10. The MND Mapping Project should provide qualitative and quantitative data  the appropriateness of the current physical map and  the roads of referral needed  the role of ‘gate keepers’  where ‘blocks’ to service provision occurs  where service provision works well  things we have not considered

11. Brainstorm of potential questions to focus on during the project :  What does ‘Equity’ mean for a person living with MND?  What is the base level of service provision available to all NSW residents with MND?  What is the premium level of services available to NSW residents with MND – where is that located? What makes it premium?  What makes a positive difference for people living with MND?  What makes a positive difference for carers of people living with MND?  What makes a positive difference for children of people living with MND?

12. Brainstorm of potential questions to focus on during the project:  What makes a negative difference for people living with MND? how would this be resolvable? more $ capacity of service (eg > staff levels as opposed to more $) better assessment? waiting list reduction? more responsive service provision? more flexible service provision?

13. Brainstorm of potential questions to focus on during the project:  What makes a negative difference for carers of people living with MND?  What makes a negative difference for children of people living with MND?

14. Brainstorm of potential issues  initial diagnosis  rapid degeneration  service co-ordination  multiple assessment  waiting lists  overwhelming need for information  confusion over what is available  lack of services  lack of service provision $  home modifications / physical access issues  access to equipment pool  employment changes, including for carer  financial counselling – including bank negotiations for mortgage and credit card payments  knowing what Centrelink benefits available – including documentation required  communication problems  Ability to communicate legal capacity  carer issues  carer support  child care placement availability, including afterschool care and vacation care  general respite  emergency respite  holiday options  ventilation  nutrition / meal options  legal / financial / estate will advanced care directives forms of appointment of guardianship power of attorney succession planning  funeral arrangements  grief counselling – constant and ongoing

15. The MND Mapping Project will create a ‘map’ of services detailing the physical landmarks on the MND landscape Homes Hospitals GP clinics (communication) Specialist MND clinics Neurology clinics (aftercare) Carer NSW Equipment suppliers (private) Home enteral nutritional service (HENS) Holiday (international & local) - insurance Private hospital chemists Hospital Emergency Hospital based allied health Speech pathology, OT’s, Social Worker, Dietician, sexual health clinic Community allied health Speech pathology, OT, social worker Pathology collection centres Shopping centres Ambulance Transport options Private Neighbour aid Community Transport Taxis

16. The MND Mapping Project will create a ‘map’ of services detailing the physical landmarks on the MND landscape Aged care facilities ACAT Centrelink offices Sexuality clinic for PWD Computer access services (TASC & Northcott etc) Adaptive engineering (eg cars) Telstra MND NSW offices HACC services Community Options Projects Community Transport Home Care Neighbour Aid Couriers Online support services Online information services Wider community supports Church groups Schools – young carers programs - tutors Employers

17. The MND Mapping Project will create a ‘map’ of services detailing the physical landmarks on the MND landscape Leisure / entertainment Carer benefits accompanying person benefit Legal Firms Accountancy Firms Financial Planning Firms Employment Interpreter services Community health centres Home nursing services Independent Living Centres Hospices Palliative Care Funeral homes Counselling & Bereavement services Relationship Australia Men's health line Alternative therapies (eg massage) Friends / social connections Blood collection Genetics / research

18. Gate Keeper detail should include the rules and delegated decision making capacities to assist in understanding the decision making points What ‘roads’ are necessary for referral Who provides the referral Who needs access to the information and when (eg HACC & palliative care) Are services duplicated Service affordability Is self referral necessary or possible How is effectiveness of referral tracked Who should be the centre of support Who should be the ‘holder of information’ – privacy issues – sharing of information – client held records who needs access to the information where do people acquire ‘road maps’ or is it currently a maze?

19. Gate Keeper detail should include the rules and delegated decision making capacities to assist in understanding the decision making points  In particular, the MND Mapping Project will focus on decision points and examine how service provision decisions are made  We want to question whether decisions are made on an:  Arbitrary basis (self interest of service, funding related misinformation / lack of education of ‘Gate Keepers) OR  Guided basis (legislated, regulated, protocol based)

20. The MND Mapping Project will create a ‘map’ of services detailing the ‘Gate Keepers’ to the allocations of service provision or access to physical landmarks on the MND landscape  Gate Keepers: Family members & person GP’s & reception staff Neurologists & reception staff MND NSW Staff Phone support staff MND Regional Advisors Equipment Manager Allied Health Professionals Physio’s, OT’s, Dietician’s Speech Pathologists Nurses (home & hospital) Clinic coordinators ACAT Assessors Emergency Staff Church MND $ (Newcastle & Nth Syd)

21. The MND Mapping Project will create a ‘map’ of services detailing the ‘Gate Keepers’ to the allocations of service provision or access to physical landmarks on the MND landscape COPS Case Managers & workers Brokerage Service Providers Home care assessors & workers Social Workers HACC / NGO Employees Palliative Care Staff Veterans services MND Support Group - $$ Newcastle only Lawyers Accountants Financial Planners Undertakers Support Groups Language culture access to technology PADP

22. Think about people who may be suitable to participate in mapping Apply for funding where appropriate Contribute your ‘stories’ What do we need you to do?