Until there's a cure ... there's care

Rationale

The average length of stay of clients living with MND is longer than for many other clients accessing community palliative care services. In addition the range of services that are required for client with MND are often different. For example, there are often fewer nursing visits for MND clients compared to many people with malignant conditions. The top up funding is provided to community palliative care services so that the few clients with MND are able to access community palliative care programs and services for an extended period of time at an appropriate frequency that may not always be possible due to a long length of stay.

The needs of clients living with MND that are able to be met by community palliative care services include “quality of life activities”. Activities such massage therapy, music and art therapy and access to programs such as the biography service and pastoral or spiritual care services and respite would be deemed as quality of life activities.

Program

Community palliative care services can access a capped funding source to assist with the provision of non-core palliative care services for clients with Motor Neurone Disease (MND) to improve or maintain the quality of life for this client group. This funding is a result of the Motor Neurone Disease and Palliative Care Pathways Project and Department of Health support for the program and its recommendations. The project report is available at http://www.health.vic.gov.au/palliativecare/.

Up to $2000 (The funding level was determined using historical data about number of clients accessing community palliative care and dividing by the total funding) is available to community palliative care services once every 12 months per client with MND when specific eligibility criteria are met. The purpose of the funding is to ensure clients living with MND can access programs at community palliative care services for the duration of their episode of care, which may be considerably longer than clients with malignant or other conditions. The funding should be used to facilitate access to activities and programs that focus on quality of life (such as music therapy, social interaction, spiritual care etc) rather than the delivery of core nursing or medical services for symptom relief.

The treatment of the client living with MND must not be dependent on the service receiving any top up funding. If the application for top up funding is not successful, the client living with MND must still receive the normal and expected care and access to usual services appropriate to their condition and situation. This funding is an adjunct to existing funding and does not represent a dedicated funding stream for the provision of care to clients living with MND.

Eligibility criteria

  • The client for whom funding is sought must have a diagnosis of Motor Neurone Disease
  • The client’s length of stay must be 90 days or longer before an application can be made.
  • Activity must be designed to respond to identified needs of the client
  • The community palliative care service requesting funding must include a plan and timetable of anticipated activities (including objective measurement) and services that the client will receive, and budgeted costs of the activity. The budget may consist of a quote, for example phased payments, or be costed against a single item. 
  • The service must declare that it has sought alternative sources of funding for the activities and that no funding is available within the time frame required. Alternative sources of funding or services may include Commonwealth Carer Respite funding, Statewide Equipment Program etc. 
  • The service undertakes to collect and report the outcomes of the Edmonton Symptom Assessment Scale (ESAS) measure on clients before and after the activity outlined in the plan of activities. The ESAS item of specific interest is “Wellbeing”. Where the activity is a service delivered over a longer period (a course of intervention) ESAS should be collected during the intervention as well.
  • The service undertakes to report the outcomes of the activity, and expenditure against budget
  • The community palliative care service executive officer or their nominee signs the application to confirm that if the request for top up funding is not successful, access to the usual programs of the service will continue.
  • The community palliative care service has not previously received funding for this client in the previous 12 months
  • There is funding still available within the capped budget for the program.

Process

Community palliative care services wishing to apply for funding should complete the application form available at https://mnd.asn.au/cms/index.php/health-professionals/top-up-funding and submit to MND Victoria by email. Applications will be assessed and the outcome reported to services within ten business days. If the application is successful, the funding will be provided in one payment via an electronic funds transfer to the community palliative care service’s nominated bank account.

The application for top up funding requests the following information:

  • Date of application
  • Client identification demographic information 
  • Episode start date  Community palliative care service/s providing care
  • Client’s VINAH patient identification number
  • Current score on the ESAS
  • Summary of the client’s quality of life needs that the palliative care service has identified and will address through their programs and activities
  • Plan of anticipated activities and programs the client living with MND will access, including the frequency of participation, the anticipated length of time access will be required and the profession of the health worker undertaking the activity. The plan must include the time points at which the ESAS will be re-administered
  • Budget for the anticipated activity, including sources of funding if proposed expenditure is in excess of the program limit of $2000
  • Consent by the client living with MND to pass on their information as part of the application for funding 
  • Confirmation from the community palliative care service that access to the usual programs and services is not dependent on a successful top up funding application
  • Agreement by community palliative care service to participate in program evaluation activities
  • Confirmation that funding from alternative funding programs has been sought and is not available 
  • Banking details to facilitate electronic funds transfer to the community palliative care service

Reporting by the service on the activity should include:

  • Client identification information
  • ESAS measured prior to commencement, during the activity (where the activity takes place in a number of sessions) and at the conclusion or completion of the activity
  • Anecdotal evidence of the impact of the activity for the client and any others impacted
  • Statement that the budget has been expended or, if not fully expended, the amount of the funding received that has been expended
  • Acquittal of funds remaining

Where spending is less than the budgeted funds provided, surplus funds must be actioned as follows:

  • Where the funds remaining are $200 or less, the funds should be retained by the service
  • Where funds remaining are more than $200, the funds plus GST should be returned to MND Victoria
  • Where funds are retained by the service or returned to MND Victoria, the client retains access to those funds subject to a further application process, including availability under the capped budget.

This program description applies from 1 January 2011.

Department of Health December 2010