Advocacy is the deliberate process of influencing those who make policy decisions.

In the health care sector advocacy aims to support or encourage an activity that helps a consumer, or organisation to secure health care coverage designed to best meet their unique needs.

Advocacy and influencing at a national level is central to the mission of MND Australia.

Types of Advocacy

A number of different types of advocacy exist.  However, there are two main forms of advocacy:

• Individual Advocacy

• Systems Advocacy

Individual advocacy

Individual advocacy focuses on changing the situation of one person - to protect his or her rights or to improve individual services.

There are two common forms of individual advocacy:

1. Informal advocacy is undertaken by individuals, their parents, brothers and sisters, relatives, friends.
   • Many people with MND and their families have engaged in valuable informal advocacy but managing MND can leave little time for the extra effort involved in this process.
2. Voluntary or not for profit community based organisations that pay staff to advocate for individuals.

Most state based MND Associations employ Family Support staff that help people with MND and their families access vital services within the local health and community care system.  This is an important means of support as the health care provision system is very complex and difficult for individuals to negotiate. 

Advocacy also involves educating care providers about the needs of people with MND.

Systems Advocacy

Systems advocacy works to change the situations of a whole group of people who share a similar problem, or to change a service system. Systems advocacy can benefit many people.  It also strives to prevent problems.

Systems advocacy encourages changes to the law, government and service provider policies and community attitudes.

State MND Associations may undertake systems advocacy at a local or state level. 

Systems advocacy at the national level is a vital role of MND Australia.

Collaborative advocacy

The fact that the number of people living with MND is relatively small makes the job of influencing harder - there is power in numbers!

For particular issues MND Associations engage in collaborative or joint advocacy with other groups who have the same or similar needs.  These organisations include:

• Neurological groups
• Carers Associations
• Disability groups
• Chronic disease alliances

• Palliative care Associations

What does advocacy do for people with MND?

Advocacy can;

• Raise awareness of MND and the needs of people with MND, their families and carers
• Promote research into MND
• Promote positive change to structure and policy, which will be of benefit to people with MND
• Help people with MND and their family to access more resources and better care
• Help professionals involved in providing services to people with MND and their families gain access to resources and funding
• Help people with MND and their families to access vital support services and make services accountable ensuring there is transparency in their actions and decisions

• Help people with MND and their families have control over their situation.

What are the requirements for advocacy?

Because systems advocacy works to cause change in organisations, service systems, policy or laws, it requires a long-term, sustained effort.

       Advocacy also requires:

• knowledge of how systems, departments and services work
• an understanding of advocacy process and procedures
• depth of feeling in advancing the cause
• taking opportunities and creating them
• a sense of urgency
• doing more than what is routinely done
• challenging the community

      Areas of Advocacy for MND Associations

      Past and current areas for Advocacy include:

        MND Research

• Rilutek accepted through the Therapeutic Goods Act and Pharmaceutical Benefits Scheme
• Collaborative advocacy for Stem Cell research
• On-going joint advocacy with the MND Research Institute of Australia (MNDRIA) to support and encourage research into the cause and cure of MND as well as further treatment options

      Care and support services for people with MND and their families

• Advocacy to promote integrated care of people with MND: to support MND Clinics and models of care and establish National MND Care Pathways
• Advocacy within state and national health, disability and human services departments to ensure people with MND and their carers access vital home-based support services in a timely manner
• Promoting the inclusion of MND as a specific target group for palliative care services
• Advocacy with other neurological representative organisations to promote the need of adequate respite care services
• Promoting the special needs of carers of people with MND including targeted information, education and flexible respite options

     Financial support for people with MND and their families

• Advocacy for the provision of increased support for the equipment and financial needs of people with MND and their families
• Advocating for multidisciplinary care essential for people with MND to receive a significant level of reimbursement through Private Health Insurers
• Building awareness of the costs of living with MND

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Advocacy by MND Associations promotes recognition of your rights and needs and ensures that you have a voice and that it will be heard.

Would you like to help with influencing?

• Participate in the Call to Action launched in conjunction with MND Week each year
• Contact your local MND Association to enquire about important areas for advocacy
• Make your own submission to current government inquiries
• Contact MND Australia to enquire about national influencing activities