We provide a range of advocacy services and resources to individuals and families living with CF throughout NSW and Victoria.
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What is advocacy?
Advocacy is about working with, and supporting, a person to be heard in the decisions that affect their life, or when they feel they been treated unfairly, or they are looking for a solution to a specific problem or issue.
There are several different types of advocacy including self advocacy, individual advocacy and systemic advocacy.
Self-advocacy is a person’s ability to speak-up for themselves and the things that are important to them. They speak-up for their rights, ask for what they need and want, share their thoughts and feelings, and are able to make choices and decisions that affect their life. Self advocacy does not mean that a person doesn’t ask for ask or advice, it means that the individual is making the choices and developing and carrying out the advocacy plan.
Sometimes people may feel as though they have lost control over their life, their rights, and their responsibilities. When a person has good self advocacy skills they can have more control and make decisions that are best for them.
Some places that people speak up and self advocate include:
- Work: for example, negotiating a salary increase or change in role with an employer.
- School: for example, requesting extra time to complete an assignment if they have been unwell.
- CF Clinic: for example, providing input into their treatment plan so it reflects their priorities and needs.
- Home: for example, negotiating a curfew, or even health and treatment plan priorities, with parents.
- Centrelink: for example, explaining their situation and needs.
- When making a complaint.
Sometimes people can find it difficult to speak up and advocate for themselves. Individual advocacy supports the person to express their views and concerns, access information and services, and explore choices and options—it makes sure their voice is heard.
It involves an advocate working with the individual and:
- listening and understanding the issue
- providing information about services, supports and resources
- discussing options and helping the individual to make their own choices about what want to do
- encouraging and supporting the individual to speak up for their rights
- referring the individual to another organisation if needed.
Some examples of individual advocacy include:
- Working with the individual to help them feel confident to raise their concerns about the care while an inpatient at hospital, including the process for raising concerns or making a complaint.
- Talking to the CF Clinic team about a specific issue that an individual has about their care when they feel they can’t raise the issue themselves.
- Speaking with an employer if an individual believes they are not being treated fairly at work because they have CF and helping to lodge a complaint with organisations like Fair Work if needed.
- Liaising with housing services if an individuals housing is not suitable.
- Speaking to educators about CF and the needs of their student to ensure that they are providing support.
Systemic advocacy involves making positive, long-lasting change for a group of people.
Some examples of systemic advocacy include:
- Campaigning and lobbying to get new medications listed on the Pharmaceutical Benefits Scheme (eg ivacaftor)
- Participating in consumer advisory groups
- Making submissions to Government inquiries
- Meetings with CF Clinic teams and hospitals to provide feedback from people to change a process or implement a new service for all people who have CF.
One way of getting involved in systemic advocacy is to join a consumer advisory group: Many hospitals have advisory or reference groups for people who are patients, including ones that are specifically for people who have CF or their families. Ask your CF Clinic team or CF Community Care whether your hospital has a group.
Who can be an advocate?
An advocate can be a family member, your main carer, legal representative, trusted friend or someone from an agency that provides advocacy services. You can also advocate for yourself.
Tips for being an advocate
To be an effective advocate, for yourself or others, there are several steps to take.
Decide what you want to speak-up about
Be as specific as you can about the issue.
Ask for help
Speak with a friend, someone you trust, or an advocacy group if you’d like advice or support.
Know your rights
Do some research. If it’s an issue with your workplace, find out what their responsibilities and your rights are.
Make a plan
For example, decide who you need to speak with, when and where are the best times to do it, and how you will raise the issue. Plan what you are going to say. Think about how you will respond if the person you are speaking with doesn’t agree and how you will respond it you become upset, frustrated or angry. Practice with the help of friends or by speaking to a mirror.
Be clear in your communication
State your message clearly and simply. Tell the person exactly what you need, explain why you need it. You might find it helpful to prepare some written notes that help you list the key points you want to make. Use the notes to stay on track.
Listen to what the other person is saying. Ask questions if you are unsure or don’t understand what they mean. Repeat back your understanding of what they are saying to check you understand and at the end of the meeting, restate any decisions that were made or the next steps so you both understand each other clearly.
Take notes, or ask if you can record, the discussion so you remember what the key points were, what was decided and agreed to, and what the next steps are. If you can’t take them during the meeting, write down the important points immediately afterwards.
Stay calm and be firm and persistent
Speak loudly enough to be heard without shouting. And stay calm.
Cystic Fibrosis Community Care
Ph: NSW (02) 8732 5700 or VIC (03) 9686 1811
Call NSW Call VIC
Services: Provides individual advocacy and systemic advocacy for for CF-related issues.
Disability Advocacy Finder
Services: Type in your area code to find disability advocacy services in your area
Services: Assistance and advice for speaking up for someone you care for.
Map Your Future
Services: A free online program for disabled young people by the Youth Disability Advocacy Service . It will help you set goals and get the right support to achieve your goals.
Disability Royal Commission
The Disability Royal Commission was in response to community concern about widespread reports of violence against, and the neglect, abuse and exploitation of, people with disability. Anybody can make a submission. It will It will investigate and report on experiences and conditions in all settings and contexts, including schools, workplaces, family homes, and hospitals.
What is a Royal Commission?
A Royal Commission is an investigation, independent of government, into a matter of great importance.
They have broad powers to hold public hearings, call witnesses under oath and compel evidence.
Royal Commissions make recommendations to government about what should change.
What is the Disability Royal Commission?
The Disability Royal Commission was established on 4 April 2019. It was established in response to community concern about widespread reports of violence against, and the neglect, abuse and exploitation of, people with disability.
The Disability Royal Commission will investigate:
- preventing and better protecting people with disability from experiencing violence, abuse, neglect and exploitation
- achieving best practice in reporting, investigating and responding to violence, abuse, neglect and exploitation of people with disability
- promoting a more inclusive society that supports people with disability to be independent and live free from violence, abuse, neglect and exploitation.
It will investigate and report on experiences and conditions in all settings and contexts, including schools, workplaces, family homes, and hospitals.
Visit the Disability Royal Commission website for more information
Make a submission
Anybody can make a submission.
Submissions can be made in any way you feel comfortable – by telephone, email, video or through the Disability Royal Commission website.
If you need assistance in making a submission you can contact the Disability Royal Commission using the information below.
- Post: GPO Box 1422, Brisbane Qld 4001
You can also access advocacy support to engage with the Disability Royal Commission the the National Disability Advocacy Program or by contacting us at CFCC
Email NSW Call NSW
Email VIC Call VIC
Advocacy support can assist you to exercise your rights and achieve the outcomes you want. We can help make sure you are not disadvantaged due to any disability, your age, gender, sexual preference or your cultural background. We also have the expertise and experience in handling cases that often affect people living with CF.
There are services available to support you through any difficult feelings you might be having because of the Disability Royal Commission.
- Blue Knot Foundation offers free, specialist counselling support and a referral service for people with disability, their families and carers, and anyone affected by the Disability Royal Commission.
Ph: 1800 421 468 (9am – 6pm AEST Monday to Friday, 9am – 5pm AEST Saturday, Sunday and public holidays).
- Other services
View the list of public hearing dates on the Disability Royal Commission website