NSW COMMUNITY OPTIONS PROJECTS INC

MND Mapping Project and Funding

There are two parts:

Episodic Case Management & Brokerage Services

Mapping Project

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

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!

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.

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

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

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

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 ...

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

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?

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?

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?

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

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

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

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

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 referralWho needs access to the information and when (eg HACC &

palliative care)Are services duplicatedService affordability Is self referral necessary or possibleHow is effectiveness of referral tracked Who should be the centre of supportWho 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?

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)

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 &

personGP’s & reception staffNeurologists &

reception staffMND NSW Staff

Phone support staff MND Regional

AdvisorsEquipment Manager

Allied Health Professionals

Physio’s , OT’s, Dietician’s

Speech PathologistsNurses (home &

hospital)Clinic coordinators ACAT Assessors Emergency StaffChurch MND $

(Newcastle & Nth Syd)

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 WorkersHACC / NGO

Employees Palliative Care Staff Veterans services

MND Support Group - $$ Newcastle only

LawyersAccountantsFinancial PlannersUndertakersSupport GroupsLanguage culture

access to technology PADP

• 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?