Lives unaffected by cystic fibrosis

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Cystic Fibrosis Community Care

Cystic Fibrosis Community Care (CFCC) offer a range of programs and services to individuals and families living with cystic fibrosis in Victoria

Download our 2018 Victorian Programs and Support Services guide

If you would like to further information or to refer yourself or family for any of our services please contact us on (03) 9686 1811 or email support@cfcc.org.au.

Become a member of CFCC to access our member-only services in Victoria.

If you would like to find out more about services we provide in NSW visit our NSW programs and support services information.

We recognise the diverse range of issues faced by individuals with CF and their families and provide support on advocacy issues. CFCC advocates for members at a local, state and national level and liaises with other organisations to lobby for improvements for those living with CF. CFCC also works one-to-one with individuals providing support for self advocacy as well as advocating on behalf of the individual.

What is an Advocate?

An advocate provides information and advice to help you to take action to resolve any concerns. An advocate may also need to take a more active role in representing your rights to another person or organisation. 

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.

Cystic Fibrosis Community Care- Victoria (CFCC) is supported by the Victorian Government to provide you with advocacy assistance and/or referrals to the appropriate service. We offer a range of advocacy services to our members:

  • Self-Advocacy
  • Individual Advocacy
  • Systemic Advocacy

Why use the CFCC Advocacy Services?

We can assist you to exercise your rights and achieve the outcomes you want.  We can help make sure that 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 may be times when you feel it is hard to speak up for yourself so an advocate can help you:

  • clarify what is happening and sort out any confusion or misunderstandings
  • contact the relevant service, discuss the issue and the options for solutions
  • support you to negotiate a complaint processes
  • supporting you at face to face meetings with a service
  • write support letter

For more information on the advocacy services please contact on (03) 9686 1811 or support@cfcc.org.au

Hospital visits

If you are planning a hospital admission please feel free to give us a call so we can come in and visit you. We can then come in for a chat, maybe bring you a treat or two and we may be able to help you out with assistance while you are unwell if you need it.
Contact us on support@cfcc.org.au or phone (03) 9686 1811

One on one peer support

Have you ever wanted to speak to someone who understands CF, without having to explain what it is?
Our peer support porgram provides opportunities for people with CF, their family and carers to have a chat with a peer volunteer. Our peer volunteers are members of the CF community including; parents, siblings, grandparents and individuals with CF. Peer volunteers are available to have a chat, share information, experiences and provide a listening ear.
Find out more online or contact us on programs@cfcc.org.au or phone (03) 96861811.

Online groups

For women with CF
Our Facebook group for young women with CF, Sister5Roses was prompted by a group of our young members who were looking for a space to connect online. This group is a place for young women with CF (18+) to connect with others who share a similar journey.
The Sister5Roses group can be joined on request, and is a safe place for you to share your stories and hear those of other young women. We invite you to post, comment and share things that interest you ... either CF-related or not. We're hoping this online community will be a place where you can drop in for a chat, make new friends, have a laugh and share your views on things that interest you. We're looking forward to receiving your friend request.

Support dinners for family members

Each year we host a number of support dinners across Victoria. These dinners provide an opportunity for family members to meet others who are, or have been in a similar situation. They are a great chance to meet new people and catch up with some old friends and share stories, experiences and resources.
To find out when and where the next dinner is being held visit our Events page, or contact us on programs@cfcc.org.au or (03) 96861811.

Afternoon tea for recently diagnosed families

Each year we host a number of support activities across Victoria. One of these is a get together for families who have a member who has been recently diagnosed with CF. During the get together families can share experiences and gain information in a relaxed setting. It also provides families with an opportunity to be introduced to CFCC staff and our services.  
To find out when and where the next afternoon tea is being held visit our Events page, or contact us on programs@cfcc.org.au or (03) 96861811.

Afternoon tea for grandparents 

Each year we host an afternoon tea for people who have a grandchild with CF.  This afternoon tea provides an opportunity for grandparents to meet, share experiences and find out more about CF.
To find out when and where the next afternoon tea is being held visit our Events page, or contact us on programs@cfcc.org.au or (03) 96861811.

Annual remembrance ceremony

Held annually, this is a service to remember those who have lost their battle with cystic fibrosis (CF) and all those affected by this loss.
We would like to extend a warm invitation to you, your family and friends to join us for our Remembrance Service to honour the lives of people we have lost to CF.
The ceremony includes special readings, time for reflection and the opportunity for those attending to light a candle and place a rose in remembrance. This a special time for the CF community to come together. We welcome all religious traditions and beliefs.
To find out when the next Remembrance Service is being held visit our events page, or contact us on support@cfcc.org.au or (03) 96861811.

Support for school children and their families

Through our Study Buddy Program we work with school children and families to ensure that all children with CF can have the best learning opportunities and experiences while managing their CF. We can do this through:

  • Exploring strategies with parents and children with CF to support their learning.
  • Collaborating with families, teachers and other educational professionals to find the most effective ways to support children with CF.
  • Speaking to school staff to raise awareness about CF and the impacts on health and learning.
  • Providing educational resources and referrals to other services.
  • Liaising with medical professionals and hospital teachers.

For more information contact education@cfcc.org.au or (03) 9686 1811.

Resources for teachers

The CFSmart website provides a wide range of educational resources about CF for teachers, parents and students including:CFSmart logo

  • Four interactive E-learning training modules about CF.
  • Information booklets and fact sheets for early childhood, primary and high school age students and teachers.
  • Videos and personal stories about living with CF.

We can also provide support for teachers through:

  • Giving CF presentation to staff in school or by video conference/phone
  • Discussing individual strategies for working with student with CF
  • Providing information about additional educational resources and services

CF Education days are run by the Royal Children’s Hospital and Monash Children’s Hospital at the start of each school year. These provide detailed information about CF and how to create a CF-friendly environment. 

For more information contact education@cfcc.org.au or (03) 9686 1811.

Scholarship Program

Our Scholarship Program provides assistance to CFCC Members who have children under 18 years with cystic fibrosis (CF) to help cover costs related to their school education or ‘alternate educational pathways’ (e.g. educational courses, services or equipment).
Applications for 2018 will close Monday 10 December 2018 (or earlier if all available grants have been allocated).
Find out more and download our application form 

Computer equipment for loan

Our school aged members who have CF may be eligible to loan computer equipment such as laptops for educational use.
Find out more and download our application form

Get your school involved in fundraisingCrazy Hair Day logo

Crazy Hair Day is an annual fundraising event and is a fun way for schools to raise awareness and funds for people living with CF. The official day is Friday 6th July but feel free to choose a date that suits your school better and go as C-R-A-Z-Y as you can!
Find out more or register online

 

Our Study Buddy Program is supported by the Newman’s Own Foundation   CFSmart is produced in conjunction with CFWA and our new website is supported by the Ian Potter Foundation
Newman's Own Foundation logo   Ian Potter Foundation logo

Physiotherapy equipment program

Our Physiotherapy Equipment Program provides support to CFCC Members who have CF and need to purchase essential physiotherapy equipment to help manage their CF.
Find out more and download our application form

An equipment loan program

Our Equipment Loan Program enables CFCC Members who have CF to borrow medical and physiotherapy equipment and laptop computers for educational use. Equipment available to borrow includes:

  • Nebuliser pumps (Pari Boy SX, Pari Mobile S, Aeroneb Go, Pari Sinus)
  • Oxygen concentrators (AirSep New Life Elite, Inogen One G2 (portable))
  • Wheelchair
  • Laptops (for primary and secondary students who have CF)

Find out more and download our application form

Fitness participation program

Our Fitness Participation Program provides support for CFCC Members who have CF to participate in the sport of their choice and to help improve lung function and overall health.
Applications for 2018 will close on Monday 10 December 2018 (or earlier if all available grants have been distributed).
Find out more and download our application form

20% reimbursement program

Our 20% Reimbursement Program assists CFCC Members who have CF and their families by reimbursing some of their CF-related expenses. 
Applications for 2018 will close on Monday 10 December 2018 (or earlier if all available grants have been distributed).
Find out more and download our application form 

​Counselling assistance program

Our Counselling Assistance Program provides assistance to CFCC Members who have CF and their immediate family who would like to access counselling services through a psychologist to help manage their CF.
Applications for 2018 will close Monday 10 December 2018 (or earlier if all available grants have been allocated).
The Counselling Assistance Program is generously funded by the Peaks4CF cycling team.
Find out more and download our application form 

TV hire for hospital stays

Our Television Hire Program enables CFCC Members who have CF to have the cost of their television while they are in hospital for CF-related issues subsidised.
To find out more email us at support@cfcc.org.au or phone (03) 9686 1811. 

Scholarship Program

Our Scholarship Program provides assistance to CFCC Members who have children under 18 years with cystic fibrosis (CF) to help cover costs related to their school education or ‘alternate educational pathways’ (e.g. educational courses, services or equipment).
Applications for 2018 will close Monday 10 December 2018 (or earlier if all available grants have been allocated).
Find out more and download our application form 

Transplant assistance program

Our Transplant Assistance Program provides support to CFCC Members who who have CF and have recently had a CF-related transplant. This grant aims to help relieve some of the fnancial stress while people recover and get back on their feet. 
Applications for 2018 will close on Monday 10 December 2018 (or earlier if all available grants have been distributed).
Find out more and download our application form 

Accommodation assistance for regional families

Our Accomodation Assistance Program assists CFCC Members who CF who live in regional Victoria to have the support of their immediate family while attending appointments and/or hospital stays in Melbourne.
Find out more and download our application form

You may also be able to access support through state government patient transport assistance schemes such as Victorian Patient Transport Assistance Scheme (VPTAS) or the NSW Government Isolated Patients Transport and Accommodation Assistance Scheme (IPTAAS).

CF-related emergency financial assistance

Our CF-Related Emergency Assistance Program provides CFCC Members who have CF with emergency fnancial assistance for urgent CF-related needs at times of crisis, during lengthy hospital admissions or following sudden changes of health for people and families on a low income. 
Find out more and download our application form

These are some of the concessions and benefits offered by Centrelink and other organisations that people who have cystic fibrosis (CF) or their parents or carers may be eligible to apply for:

Medications

  • Pharmaceutical Benefits Scheme (PBS) Safety Net
    What it is:  When someone (or a family) has spent a set amount (the PBS Safety Net threshold) on prescription medications, the price of medications are reduced for the rest of the calendar year. 
    Eligibility:  Everyone
  • Low income health care card
    What it is:  Reduces the cost of health care, including through cheaper PBS medications. You may also get a discount on electricity, gas and water bills and motor vehicle registration. 
    Eligibility:  Income must be below a threshold. 
  • Ex-Carer Allowance (Child) Health Care Card
    What it is:  Reduces the cost of health care, including through cheaper PBS medications. You may also get a discount on electricity, gas and water bills and motor vehicle registration if the bills and Card are in the same name. You need to renew the Card each year.
    Eligibility:  People aged between 16 and 25 years of age who are a full time student and their parent or carer had a Carer Allowance Health Care Card for them on the day before they turned 16.

Travel and transport

  • Victorian Government Victorian Patient Transport Assistance Scheme (VPTAS)
    What it is:  A reimbursement of some of the cost of travel and accommodation for people who have to travel to access medical specialist services or specialist dental treatment. 
    Eligibility:  Victorians who travel more than 100km one way or an average of 500km a week for one or more weeks to access medical specialist services or specialist dental treatment. 
  • Isolated Patients Transport and Accommodation Assistance Scheme (IPTAAS)
    What it is:  A reimbursement of some of the cost of travel and accommodation for people who have to travel to access medical specialist services or specialist dental treatment. 
    Eligibility:  People living in NSW who live more than 100km from, or travel more than 200km a week to access, medical specialist services or specialist dental treatment.
  • Mobility Allowance
    What it is:  Assistance with the cost of travel for work, study or volunteering when people can’t use public transport (or if there isn’t public transport near where they live) due to disability, illness or injury. If you get a mobility allowance you will also get a health care card.
    Eligibility:  People aged 16 years of age or older who have a medical report from their doctor confirming they can’t use public transport without substantial assistance because of disability, illness, or injury when traveling to and from home for paid work, voluntary work, study or training, or to look for work (hours spent on these must be above a minimum threshold). People may also be eligible if there isn’t public transport near where they live.
  • Disabled Persons' Parking Scheme
    What it is:  A permit that provides parking concessions based on a person’s need for assistance, including being able to park in disabled parking bays. 
    Eligibility:  Victorians who have a significant disability or illness that affects their ability to walk unaided or walk long distances. Confirmation from a Medical Practitioner is required. 
  • Multi-Purpose Taxi Program
    What it is:  A 50 per cent discount on taxi fares for people who are permanently and severely disabled people (Maximum trip and annual limits apply). 
    Eligibility:  Victorian residents who have a Pensioner Concession Card or are able to show financial hardship, and have a disability that affects their ability to use public transport independently. Confirmation by your doctor is required. 

Income support

  • Disability Support Pension
    What it is:  Financial support through a regular payment for people who are unable to work 15 hours or more a week as they have a permanent physical, intellectual or psychiatric condition.
    Eligibility:  People aged 16 years of age or older who have a permanent and diagnosed disability or medical condition (a medical review is required to assess impairment), and who meet the income and assets tests. 
  • Sickness allowance
    What it is:  A payment for people who temporarily can't work or study because of an injury, illness or disability.
    Eligibility:  People aged 22 years of age or older who have a job or are a full time student (and get ABSTUDY or Austudy), but temporarily can't work or study because of an injury, illness or disability (a medical certificate from your doctor is needed), and who meet the income and assets tests.

Carer support

  • Carer Supplement
    What it is:  An annual payment, paid in July, to people who receive carer support such as the Carer Allowance and Carer Payment. It is in addition to the other payments. 
    Eligibility:  There is no need to apply for the Carer Supplement. It will automatically be paid to you if you receive eligible carer support, such as the Carer Allowance and Carer Payment. People can get the supplement for each person they receive Carer Allowance for. Part time carers will receive a part rate of the Carer Supplement. 
  • Carer Allowance
    What it is:  A fortnightly payment for a person who needs to give additional daily care to someone who has a disability or serious illness or is frail aged. 
      People wEligibility:ho care for a child aged under 16 who has a disability or serious illness and lives with you (CF is on the Australian Government’s List of Recognised Disabilities). If caring for a person aged 16 years and older, the carer must provide constant care in the home of a person who has a severe disability or severe illness or is frail aged. 
  • Carer Payment
    What it is:  A payment for people who are unable to work in substantial paid employment because they provide full time daily care to someone with a severe medical condition, severe disability, or to someone who is frail aged. 
    Eligibility:  People who provide constant care in the home of a person who has a severe disability or severe illness or is aged. People must also meet the income and assets tests and not receive any another income support payment.

Bills and utilities

  • Essential Medical Equipment Payment
    What it is:  A payment to help with energy costs to run medical equipment, medically required heating or cooling.
    Eligibility:  People who need heating, cooling or certain equipment for their medical needs, or the needs of the person they care for. The person claiming the payment, or the person they care for, must have a Commonwealth Concession Card and pay the running costs of the equipment. A medical certificate is required. Some of the eligible equipment includes a parenteral or enteral feeding device, oxygen concentrators, nebulisers (used daily), and positive airways pressure devices.

Child care

  • Child Care Benefit
    What it is:  A payment to help with the cost of day care, outside school hours care, vacation care, pre-school and kindergarten.
    Eligibility:  People using approved or registered child care whose income is below a set threshold.
  • Child Care Rebate
    What it is:  If you are eligible for the Child Care Benefit you may also be eligible for this additional payment to help with child care costs.
    Eligibility:  You who use a Child Care Benefit approved child care service, are eligible for the Child Care Benefit (even if you earn too much to receive payment), and you and your partner meet the Work, Training, Study test for Child Care Rebate or meet an exception
  • Jobs, Education and Training (JET) Child Care Fee Assistance
    What it is:  An extra payment that helps with child care costs if you get an eligible income support payment from Centrelink
    Eligibility:  People who receive and eligible income support payment from Centrelink (e.g. Parenting Payment, Carer Payment, Newstart Allowance - see online for a full list) and have a Job plan in place, receive the highest payment rate of Child Care Benefit, and use approved child care.
  • Special Child Care Benefit
    What it is:  Provides extra assistance with child care fees for a short period to help families experiencing hardship. Families may also be eligible for an increase in their weekly limit of Child Care Benefit hours due to exceptional circumstances.
    Eligibility:  People using approved or registered child care with an exceptional case of short term financial hardship which has substantially reduced their capacity to pay child care fees or due to the execptional circumstances reqruire an increase in the weekly limit of hours for Child Care Benefit. Exceptional circumstances might include serious illness or hospitalisation, or if the primary carer is unavailable due to other caring responsibilities or state emergency or disaster.

Take A Break Program

Our Take A Break Program supports CFCC Members who are aged 21 years or older and have CF to get away and have a break. The Program is generously funded by Andrew’s Legacy. Andrew Carr passed away in 2008, and it was his wish that his family and friends donate money in lieu of flowers to fund the program. Andrew wanted other adults living with CF to enjoy quality time away from the ‘hum-drum’ of life - something he and his wife Melissa found so valuable. Andrew’s family and CFCC is grateful to all who have contributed and continue to contribute to Andrew’s Legacy.
Applications for 2018 will close on Monday 10 December 2018 (or earlier if all available grants have been distributed).
Find out more and download our application form

Happy Family Program

Our Happy Family Program supports low income CFCC Members who have a child under 18 years old who has CF or adult Members who have CF and children under 18 to have a day out or escape for a weekend away. 
Applications for 2018 will close on Monday 10 December 2018 (or earlier if all available grants have been distributed).
Find out more by contacting us at support@cfcc.org.au or 03 9686 1811

Simon's Adventure Fund

Simon's Adventure Fund has been generously established by Simon Minson's family. It's aim is to enable successful applicants aged 18 years and over who have cystic fibrosis (CF), to participate in an activity on their bucket list. It may be something that pushes the boundaries, it may be something that seems a little crazy. Simon was always up for an adventure. He snowboarded, skydived, bungy jumped, shot down rapids, dived with sharks, was a keen trail bike rider, got dangerously close to a brown bear in the wild, loved being behind the scenes at the Zoo and played footy against guys twice his size! He chose to live his life to the full with adventures large and small. Simon died in 2014 from complications due to his CF whilst on one of these adventures with his mates in Vietnam. Simon's family want people with CF to live life to the full and so they have established Simon's Adventure Fund to assist others to fulfil their own adventure.
Find out more and download an application form

Maya’s Gift

Maya’s Gift provides support for CFCC Members who have CF, or have a  child under 18 years, to enjoy a day out together as a family and a break from the day-to-day routine and stress that comes from living with CF. Maya's Gift is generously funded by FinancePath and can be used for a range of activities such as entry to an adventure park, the zoo, or the museum; tickets to the movies, a sporting event, or a show; accommodation; or even a dinner at a favourite restaurant. 
Applications for 2018 will close on Monday 10 December 2018 (or earlier if all available grants have been distributed).
Find out more and download an application form

Holiday Cabins

We have holiday cabins for hire to CFCC Members and people who have CF at reduced rates. The cabins can also be hired out to non-members at regular rates. They can be booked for a maximum of seven nights per stay and bookings can only be made 8 weeks in advance. The cabins are located in:

  • Corowa:  Ball Park Caravan Park, Bridge Rd, Corowa NSW 2646
    Maximum number of guests is six (1 double bed and 2 sets of bunks)
  • Inverloch:  Big 4 Inverloch Holiday Park (Site 142), 2 Cuttriss St, Inverloch VIC 3996
    Maximum number of guests is four (1 double bed and 1 set of bunks)

Find out more and download our application form

94% of children born with CF were born into families with no known family history.

To have a child with CF, both parents must be a carrier of the gene changes that cause CF. If both parents are carriers of the CF gene, then with each pregnancy there is a 25% risk of that child having CF. 

Being a CF carrier does not mean you have CF. Carriers usually display no symptoms of CF. 

CF carrier screening services are available in Australia to help you find out whether you or your partner carry the CF gene change. 

Find out more