Advocacy Toolkit

What is advocacy?

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

In the health, disability, and social care sector, advocacy aims to support or encourage an activity that helps people living with ALS/MND and their caregivers secure access to health and supportive care that best meets their changing and progressing needs.

Advocacy and influencing at a national level is central to the mission of many ALS/MND associations around the world. Advocacy is a means through which ALS/MND associations ensure that people living with ALS/MND have access to the best possible care within their legal, health, and supportive care systems.

This resource is designed to help you and your association, whether you are just starting an advocacy program or looking to expand an existing one. It also gives emerging ALS/MND associations tools they can use to begin engaging in advocacy at the local, regional, national, and international levels.

Types of advocacy

There are three main types of advocacy used by ALS/MND associations and advocates around the world: individual advocacy, systemic advocacy, and collaborative advocacy.

Individual advocacy

Individual advocacy focuses on changing the situation of one person, to protect their rights or to improve individual services.

There are two common forms of individual advocacy:

1. Informal advocacy is undertaken by individuals, their relatives, and friends.Many people living with ALS/MND and their families have engaged in valuable informal advocacy, but managing ALS/MND can leave little time for the extra effort involved.
2. Voluntary or nonprofit community-based organizations advocate for individuals.Many ALS/MND associations engage in this type of advocacy. Associations may employ support staff who help individuals living with ALS/MND and their families access care and support services locally as needs arise or change. This is an important means of advocacy because care systems are often very complex and difficult for individuals to navigate.

   This advocacy also involves educating care providers about the needs of people living with ALS/MND, to promote access to timely and coordinated multidisciplinary care.

Systemic advocacy

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

Systemic advocacy encourages changes to laws, to government and service provider policies, and to community attitudes.

ALS/MND associations may undertake systemic advocacy at the local level (for example, state, province, region, or territory) or at the national level within their countries.

Collaborative advocacy

The number of people living with ALS/MND is relatively small, which makes influencing harder. There is power in numbers.

For particular issues, ALS/MND associations may consider joint advocacy with other groups that have the same or similar needs. These organizations include:

• neurological groups
• neurodegenerative or neuromuscular disease groups
• disability groups
• chronic disease or rare disease alliances
• palliative care associations
• caregiver associations

What does advocacy do for people living with ALS/MND?

Advocacy can:

• raise awareness and understanding of ALS/MND and the needs of people living with ALS/MND, their families, and their caregivers
• promote research into ALS/MND
• promote positive changes to structures and policies that benefit people living with ALS/MND
• help people living with ALS/MND and their families access more resources and better care
• help professionals who provide services to people living with ALS/MND and their families gain access to resources and funding
• help people living with ALS/MND and their families access vital support services and hold those services accountable, ensuring transparency in their actions and decisions
• help people living with ALS/MND and their families have control over their situation

What does systemic advocacy require?

Systemic advocacy works to change service systems, policies, or laws, so it requires a long-term, sustained effort. It also requires:

• knowledge of how systems, departments, and services work, especially government and health and supportive care departments
• an understanding of advocacy processes and procedures
• taking opportunities and creating them
• a sense of urgency
• doing more than what is routinely done
• challenging the community
• engaging with media

The answers to these questions may differ depending on whether you are working at a local or national level.

Common areas of advocacy

For Alliance member associations, past and current areas for advocacy may include:

• improved clinical care for people living with ALS/MND within a given health care system, including:
  • access to multidisciplinary care
  • access to durable medical equipment
• improved support services for people living with ALS/MND and their families, including:
  • access to aids and equipment
  • home care
  • disability or aged care support
  • respite care
• financial support for people living with ALS/MND and their families
• ALS/MND research funding
• increased public awareness and understanding of ALS/MND through official recognition of the disease or related issues

Tips for successful advocacy

• Have clear, realistic goals. Be as specific as you can. Consider developing short-term and long-term goals and dividing big, general goals into achievable steps.
• Be strategic and efficient. Try to talk to the right person at the right time to move your policy forward.
• Develop a campaign or call to action that focuses on the policy you want to change.
• Try different tactics. Ways to contact policymakers include:
  • arranging meetings with relevant politicians and government departments in their offices
  • engaging with the party in power as well as the opposition
  • inviting politicians to visit your association or clinic
  • writing letters and making phone calls
  • using social and traditional media to persuade politicians to champion your call to action
  • attending town hall meetings or other public events to educate policymakers
• Encourage grassroots advocates.
  • Identify grassroots advocates: people living with ALS/MND who support your association and are willing to meet, write letters, email, or call their elected representatives, using a script you provide.
  • Give your grassroots advocates a list of ministers, opposition spokespeople, and other elected representatives to contact.
• Have facts and figures prepared. Find and know the relevant statistics. If possible, conduct surveys or research to produce more figures, such as the average cost of living with ALS/MND for one year in your country, or the average life expectancy of someone living with ALS/MND in your country. Present facts and figures in an organized, concise way, often through printed handouts or fact sheets.
• Develop a media and communications plan. Think about how you will communicate your advocacy campaign and engage the public to support your goals.
• Share personal stories. A personal story from someone living with ALS/MND who needs help is often the most persuasive argument. An association should always get permission and support from the individual before sharing their story.

Advocacy by ALS/MND associations promotes recognition of the rights and needs of people living with ALS/MND and ensures that they have a voice and that it is heard.