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Cystic Fibrosis Queensland

Cystic Fibrosis Queensland is one of Queensland’s largest and oldest organisations supporting people living with chronic illness. Founded in 1960 by members, our mission has evolved over time to encompass more than service provision and now includes advocacy, social work support and community services, community fundraising as well as health and wellness activities and retreats. 

Cystic Fibrosis Queensland is the peak community not for profit charity working with and for the increasing number of people living with cystic fibrosis who attend a Queensland Health clinic for treatment.   We advocate for the entire cystic fibrosis community and seek to raise much needed awareness of this debilitating condition - 90% of our income relies on fundraising.

For an overview of the programs offered to Cystic Fibrosis Queensland members please click here

Physical Activities Subsidy and Parking Subsidy

We provide our members with a $150 subsidy per year for any expense which promotes physical activity and a maximum of $75 a year parking reimbursement. Send us a completed form and the receipt. This subsidy may be claimed once every calendar year.

Click here to download your form.

Email the completed form to [email protected].

Newly Diagnosed Support

Information is critical when your child is first diagnosed with cystic fibrosis and for the first 12 months of their life. Your hospital will provide you with a prepared Cystic Fibrosis Queensland information pack which also contains our membership form.

Click here to download your copy of the Newly Diagnosed Information for Parents.

Boredom Buster Bags

We provide Boredom Buster Bags for children while they are in hospital. Email [email protected] to request a bag. Include your child’s age and gender.

In-Hospital Support for Adults

We provide adult members with a food voucher while they are in hospital. Contact the Services Team to request a voucher, 3359 8000 or [email protected]

School support

We respond to referrals from schools requesting assistance with cystic fibrosis related issues. Cystic Fibrosis Queensland uses the CFSmart program to inform teachers who are preparing for the first time to have a child with cystic fibrosis in their class.

Teachers are welcomed to complete the e-learning modules that have been developed by CFCC and CFWA. Each module is worth 1 professional development point, is free to undertake and takes about 20-30 minutes to complete.

The modules and more information on CFSmart can be found here

Parents and Carers Events

These are educational and social events for parents and carers.

Phone Support

We respond to requests for information from our clients who attend a Queensland Health clinic, our mobile support number is 0437 798 484.

Advocacy

Cystic Fibrosis Queensland is able to provide individual level advocacy with external organisations when a client is not able to achieve their desired outcome.

Hospital Airway Clearance Equipment

In 2014 Cystic Fibrosis Queensland secured a grant which allowed us to provide free respiratory equipment to people living with cystic fibrosis who are ineligible for MASS (medical aids subsidy scheme) through the cystic fibrosis Hospital clinic physiotherapists. The items purchased by hospitals under this scheme have all been distributed by the physiotherapist to the cystic fibrosis  community. Cystic Fibrosis Queensland has a number of airway clearance items in stock for members who are not covered by MASS, please speak to you hospital physiotherapist to obtain a referral for these items. Your physiotherapist  will need to complete one of the the following forms and forward it to [email protected].

If you have any questions, pleases don’t hesitate to contact the Services Team, 07 3359 8000 or email [email protected].

Equipment Loans

We lend travel nebulisers and portable oxygen concentrators to clients and families. If you need either of these items please contact the Services Team, 07 3359 8000 or email [email protected].

These are concessions and benefits offered by Centrelink and other organisations.
For a list of Cystic Fibrosis Queensland support services, including the Physical Activities Subsidy click here. For more in depth information about concessions and subsidies offered by the Queensland government, head to the Queensland Government Smart Savings page.

Concessional car parking

From 1 October 2017, patients and their carers may be eligible for concessional parking at Queensland public hospitals.

Car parking concessions are being made available to eligible patients and their carers in the following categories:

  • experiencing financial hardship (which may include government concession card holders)
  • need to attend hospital for an extended period of time
  • required to attend hospital frequently
  • special needs who require assistance.

For more information click here.

Centrelink Essential Medical Equipment Payment

An electricity concession for people with a Health Care Card. Parents of children with cystic fibrosis who do not have a Health Care Card themselves are also eligible to claim this payment, as children who have a Health Care Card are eligible. You will receive $152 per year for each item of essential medical equipment you use. Check the eligible items list to see what you can claim: nebulisers, an enteral feeding pump, an oxygen concentrator and a BiPap machine are on the list. Claim through Centrelink Online Services or in person at a Centrelink Office. You will need your GP or specialist to complete the medical form. If you move house, you need to reclaim but you may be able to use your original medical form if nothing has changed.

Click here for the list of eligible equipment. Access the Essential Medical Equipment Payment medical form by clicking here.

Queensland Government Medical Cooling and Heating Concession

An electricity concession for people with a Health Care Card who need cooling or heating for medical reasons and have an air conditioner. Parents of children who have a Health Care Card are eligible to claim this payment. Your name doesn’t need to be on the energy bill but you must be able to demonstrate that you contribute. You will receive $82.50 once every three months. Payments are made on a cycle where everyone gets paid at the same time, so it may be several months before you receive your first payment. The payment will be backdated to the date of claim. The claim form is online. Ask your specialist to complete the medical part of the form. If you move house, you can email the Department your new address and confirm that you have air conditioning in your new residence.

For more information click here.

Queensland Government Electricity and Gas Rebates

If you have a Health Care Card and are a named account holder on the electricity account, you can receive an electricity concession by contacting your electricity retailer. It works out to about $340 per year and is taken directly off your bill. This used to be only for pensioners but the rules were changed in April 2017. For people with a Pensioner Concession Card there is also a gas rebate of $70 per year.

For more information click here.

Access to continuous glucose monitoring through the NDSS

To access CGM products through the NDSS, the person will need to be assessed by an authorised health professional to determine whether they meet specific eligibility criteria and to ensure that the use of CGM will help as part of their diabetes management.

The authorised health professionals who can perform these assessments include endocrinologists, credentialled diabetes educators, and other health professionals specialising in diabetes (medical doctors, paediatricians or nurse practitioners). To be eligible to participate in the CGM Initiative, the person must be assessed by an authorised health professional and meet the criteria for one of the following groups:

If a person does not meet the specific clinical criteria but their health professional believes that the person does have an equivalent level of high risk / high clinical need, consideration may be given on a case-by-case basis.

In these exceptional circumstances, consideration may be given on a case-by-case basis, noting these will be:

  • considered by an appropriately constituted expert panel established by Diabetes Australia that will provide a recommendation to the Department of Health; and
  • the Department of Health will be the deciding body for all of these cases.

For more information click here.

To learn more about submitting a special consideration application, please contact the NDSS Helpline on 1300 136 588.

PBS Safety Net

The PBS Safety Net threshold is currently $1,494.90 per calendar year for general patients and $378 for concession card holders. Once you reach the safety net threshold, ask your pharmacist for a Safety Net card which will reduce the cost of medications to $6.30 per item for general patients and no cost for concession card holders. Couples and families with dependent children can combine their expenditure to meet the threshold sooner. If you go to more than one pharmacy, you can ask them for a record of your expenditure so you can combine the amounts.

For more information click here.

Queensland Health Patient Travel Subsidy Scheme (PTSS)

If you are a Queensland resident and need to travel more than 50 km to access a specialist health service, your local hospital will subsidise your travel. Patients who live in Mackay and further north can have their flights booked for them by their local hospital. For patients living closer to Brisbane than Mackay, ground transport will be subsidised. Application must be made before travelling so approval can be obtained. If claiming for the first time, we recommend visiting your local hospital Patient Travel Office to discuss how to claim. Explain that you or your child has cystic fibrosis, it is a lifelong condition and let them know how often you will be travelling. This will make it easier for them to correctly advise you how to claim. If you have difficulties, contact your hospital Social Worker or Cystic Fibrosis Queensland.

For more information and forms click here.

New South Wales Health Transport for Health (IPTAAS)

If you are a New South Wales resident and live more than 100 km from your specialist service, New South Wales Health will subsidise your travel. Ask your local doctor to complete a referral form when claiming the first time.

For more information and forms click here.

Northern Territory Government Patient Assistance Travel Scheme (PATS)

The Patient Assistance Travel Scheme (PATS) is a subsidy program that provides financial help for travel and accommodation expenses if you need to travel a long distance to see an approved medical specialist.

You must be referred by a medical professional to the nearest approved specialist.

For more information click here.

Continence Aids Payment Scheme (CAPS)

The Continence Aids Payment Scheme  is an Australian Government Scheme that provides a payment to eligible people to assist with some of the costs of their continence products. If you have permanent and severe incontinence and you are an Australian citizen or permanent resident 5 years of age or older you may be eligible for CAPS. 

For more information click here.

Mental Health Care

Mental Health Care and Medicare.  Medicare can help with the cost of some mental health treatments.  For more information visit: https://www.humanservices.gov.au/individuals/subjects/whats-covered-medicare/mental-health-care-and-medicare

Queensland Government Get Started Vouchers

$150 per year is available for children aged 5 to 17 with a Health Care Card. For more information visit: https://www.qld.gov.au/recreation/sports/funding/fairplay

Use the club locator to find eligible clubs in your area.For more information click here.

Variety Smile Medical Support Program Grant

Variety New South Wales administers a national Smile Program and Queenslanders are eligible. You can apply for a grant of $1,000 to assist with health care related costs for your child, including nebulisers, therapy, child care services, parking, tolls and petrol. If approved, the grant may be claimed by sending in receipts for reimbursement, or for more expensive items the supplier may be paid directly. A letter of support is needed. Email [email protected] to request a letter of support.

For more information click here.For the application form click here.

In Home Care

In Home Child Care may be available to families unable to access existing child care services. Provided by registered care providers, In Home Care attracts Child Care Rebate covering 50 per cent of out of pocket costs to a maximum of $7,500 per year. Contact providers directly if you are interested in accessing In Home Care for your child with cystic fibrosis or for their siblings when you have medical appointments for your child with cystic fibrosis.

For more information click here.

Chronic Disease Management Plan for Allied Health Services

A Medicare rebate is available for a maximum of five services per patient each calendar year. It includes physiotherapy and psychology services. There will be a gap to pay depending on how much the provider charges. Ask your GP if you would like to access this program.

For more information click here.

Northern Queensland Primary Health Network

In partnership and collaboration with communities through Community Advisory Groups and health providers through General Practice led Clinical Councils we identify the health issues and activities specific to the needs of each community.

For more information click here.

Better Access to Mental Health Care Program

A Medicare rebate for psychology services - 6 sessions per calendar year plus another 4 if you need them. You access these through your GP - book a long consultation so they can complete the assessment and referral forms. There will probably be a gap to pay depending on how much the psychologist charges. This program is available to anyone with mental health concerns including children, parents of children with cystic fibrosis, and adults with cystic fibrosis.

For more information click here.

Child Dental Benefits Schedule

Provides up to $1000 of basic dental services to children aged between 2 and 17 years for families receiving Family Tax Benefit Part A or some other Centrelink payments.

For more information click here.

Centrelink Child Disability Assistance Payment

A payment of $1,000 is made each July if you receive Carer Allowance to care for a child with cystic fibrosis.For more information click here.

Centrelink Carer Allowance and ex Carer Allowance Health Care Card

As cystic fibrosis is on Centrelink’s List of Recognised Disabilities, parents of all children with cystic fibrosis should be receiving Carer Allowance, a payment of $123.50 Per fortnight. This payment is not income tested. The criteria for Carer Allowance (caring for an adult) are very different and it is unlikely you will continue to receive Carer Allowance after your child turns 16. However, your child will be able to continue to have a Health Care Card as long as they are a full time student up to the age of 25.

Carer allowance information can be found here. Ex carer allowance (child) health care card information can be found here.

Centrelink Carer Payment

Carer Payment is a subsistence payment similar to the Age Pension and Disability Support Pension. If your child needs a lot of care and your family income is low, you may be eligible for full or part Carer Payment.

For more information click here.

Centrelink Carer Supplement

A bonus payment of $600 is paid each July for people receiving Carer Allowance. If you also receive Carer Payment, you receive a second $600 bonus.

For more information click here.

Centrelink Carer Adjustment Payment

This is a one off payment which families newly diagnosed with cystic fobrosis can apply for if their child is under 7 and they apply within two years of the diagnosis. To be eligible your income needs to have been affected by the diagnosis. Families receiving full income support payments from Centrelink such as Carer Payment are not eligible.

Click here for more information.

Ronald McDonald Family Retreats

Six holiday retreats throughout Australia are available for families of children with a serious illness.

For more information click here.

Aussie Kidz Charity

Aussie Kidz Charity grants can be applied for to provide your child, under the age of 18, with specialised equipment and services such as wheel chairs, shower chairs etc. You may only apply once per year per child.

For more information click here.

Wish Granting Organisations

Starlight Children's Foundation

Starlight's Wish Granting program is available to children and  teens dealing with long term, chronic health conditions.  Starlight Wishes come in all shapes and sizes, including travel wishes, hero wishes, experience wishes, and gift wishes. Referrals need to be made by a health professional.

To find out more about the Wish Granting Program visit  https://starlight.org.au/starlight-wish  and a  Family Relationship Coordinator will contact you.

Make a Wish Foundation

Children between the ages of three and 18 with a life threatening medical condition are eligible to receive a wish. Children are welcome to fill out the form themselves, however it must be signed by a parent or legal guardian. Visit https://www.makeawish.org.au/wishes/apply-wish

The Orange Pigeon - The Bucket List Foundation for seriously ill adults

Special wishes and comfort for seriously ill adults are provided by Orange Pigeon. Recipients can be nominated by anyone, including themselves. Visit http://www.orangepigeon.org.au/eligibility 

Disability Payments and Services

Centrelink Disability Support Pension

The Disability Support Pension is a subsistence payment for people unable to work more than 15 hours per week. Ask your doctor’s advice before applying.

For more information on the Centrelink Disability Support Pension click here.

Centrelink Mobility Allowance

For people with a significant mobility impairment, Mobility Allowance provides a small payment and a Health Care Card and is not means tested. You need to be working or studying for at least 32 hours every four weeks.. Talk to your doctor before applying.

For more information on Mobility Allowance click here.

Queensland Government Electricity Life Support Concession

If you have a Health Care Card, you can receive $173 per quarter towards the cost of operating a home oxygen concentrator. When your oxygen concentrator is supplied by the Medical Aids Subsidy Scheme, the forms to claim the concession are provided.

Click here for more information.

Queensland Government Companion Card

You may be eligible for a Companion Card if you need significant assistance to participate in community activities. When the person with a disability pays for entry, the card may provide free entry for the carer if the venue participates in the program.

Click here for more information.

Australian Disability Parking Permit

Disability Parking Permits are for people whose ability to walk is severely is restricted by a medical condition and can't safely walk from a car park to the entrance of a shopping centre. You would need to be on portable oxygen or approaching transplant listing to qualify for this.

For more information on Australia Disability Parking Permits click here.

Queensland Government Taxi Subsidy Scheme

To be eligible for half price taxi vouchers, you need to have a severe mobility impairment and be unable to walk 50 metres without stopping. You can apply for this when you are approaching listing for transplant.

For more information on the Taxi Subsidy Scheme click here.

Australian Government Continence Aids Payment Scheme

Assistance with the cost of continence aids if you have permanent and severe loss of bladder or bowel function.

For more information click here.

Queensland Government Medical Aids Subsidy Scheme Continence Aids Assistance Scheme

Further assistance with continence aids.

For more information click here.

Community care services

If you need help at home, you may be able to receive subsidised community support services such as cleaning, meal services, personal care and home maintenance. There is a small contribution requested for accessing these services.

If you are under 65 or an Aboriginal or Torres Strait Islander person aged under 50, contact Community Care Access Point on 1800 600 300.

For more information click here.

Assistance for a Temporary Financial Crisis

Queensland Government Home Energy Assistance Scheme

Assistance with your energy bill if you have had an unforeseen crisis and have a concession card or low income.

For more information click here.

The Walter and Eliza Hall Trust

A one time only grant of up to $1,000 to assist with essential needs during an unexpected crisis. Applications must be made through a social worker. A detailed list of all of your income and expenses is required on the application form.

For more information click here.

In response to membership requests, Cystic Fibrosis Queensland is proud to launch the following packages for our members.

Pursue your Career with Flexible and Affordable Online Studies

Cystic Fibrosis Queensland is excited to announce a partnership with Foundation Education Pty Ltd.  Under the State Government Certificate 3 Guarantee and Higher Level Skills program, we want to offer our Cystic Fibrosis Queensland Members and their families the opportunity to engage in Vocational Education and Training at a special member price across five key industry sectors.

  • Business - Administration/ Business/ Management
  • Health - Health Administration/ Dental Assisting
  • Service industries - Hospitality/Events/Retail
  • Education and Children’s services - Childcare/Education Support
  • Finance - Accounting/Bookkeeping

Learning is self-paced and undertaken via an interactive and innovative online learning platform, supported by Foundation Education’s friendly Student Services team.

A student contribution fee will apply for Cystic Fibrosis Queensland Members for these programs, ranging from $49 for concessional students or $299 for non-concessional students, saving you thousands of dollars!

To find out more, click here and a Foundation Education representative will be in contact to discuss your options, courses and verify your eligibility. 

Career Development Service

If you are at a career cross road, seeking a change in direction or simply wanting to explore information about a potential pathway then this service could be for you.

Cystic Fibrosis Queensland has negotiated premium prices for our members with KateM Consulting.

Members can choose from a range of packages and all sessions will be led by an experienced Career Counsellor all of whom are approved by the Career Development Association of Australia. Topics available include: Career Confidence, Goals and Direction.

To make your first appointment contact [email protected]

No Interest Loan Scheme (NILS)

In partnership with Foresters Community Finance, Cystic Fibrosis Queensland is proud to launch a No Interest Loan Scheme for our members.

Foresters Community Finance is a non-profit social enterprise that uses the principles of community finance to produce improved social, cultural and environmental results for its clients.

They provide loans to individuals that do not qualify for mainstream financing options, including those who are financially excluded. Goals also extend to improving overall quality of life for anyone in need.

The team at Foresters want to give Cystic Fibrosis Queensland members the freedom to live outside their routine by making life easier where they can. They want to take the stress out of affording quality treatment, the mounting costs of education and essential household items, without any nasty surprises further down the line.

The Foresters No-Interest Loan Scheme is exactly that – loans up to $1200 that carry no interest, fees or hidden surprises. They can be used for a variety of reasons, including the purchasing and maintenance of medical equipment. If you need to drastically improve your quality of life without breaking the bank, this may be the solution you are looking for.

If you need further assistance, they also offer Fair Finance loans of amounts up to $4000. These loans have low fees, low interest and flexible repayments tailored to suit your situation. By fitting into your routine where it needs to, a Fair Finance loan will cover all your bases at the same time.

Foresters loans are the equitable alternative to traditional finance. You can improve your quality of life in a few simple steps. Contact Foresters by phoning 07 3851 8000 or visit http://www.foresters.org.au/ to find out more and begin your loan application.

Click here for a document checklist.

Click here for a look at the loan application.

Magpie Creek Farmstay

Magpie Creek is located about an hours drive south of Brisbane. Enjoy the natural attractions of the Lamington National Park or the Cedar Creek Falls. Magpie Creek is a working thoroughbred farmstay located at 470 Mundoolun Connection Road, Boyland.

Click here for more information about Magpie Creek.
Contact Jenny and mention that you are a Cystic Fibrosis Queensland member to receive the discount.

Cystic Fibrosis Queensland apply for a number of grants throughout the year.  Please contact [email protected] to find out if there are any grants currently available.   All grants can be claimed by filling out the miscellaneous subsidy form and returning it to [email protected]

Nebulisers

Cystic Fibrosis Queensland apply for a number of grants throughout the year to provide Cystic Fibrosis Queensland members with a nebuliser.  Before purchasing any items please contact [email protected] to find out if there are any grants currently available or to put your name on a waiting list for the next available nebuliser. The aim is that by the end of 2020 CFQ will have provided all Cystic Fibrosis Queensland members with a nebuliser. 

Trampolines

Cystic Fibrosis Queensland apply for a number of grants throughout the year to provide Cystic Fibrosis Queensland members with a trampoline.  Please contact [email protected] to find out if there are any grants currently available or to put your name on a waiting list for the next available trampoline. 

Cleaning Subsidy

Occasionally we receive funding to help Cystic Fibrosis Queensland families keep their house hygienically clean, and to eliminate mould and reduce dust.  Please contact [email protected] to find out if there are any grants currently available.

 

If you have any questions, please contact the Services team, [email protected] or phone 07 3359 8000.

Epic Assist

 EPIC Assist has been helping people with disability and chronic illness find and maintain work for almost 30 years. The supportive team at EPIC Assist will work with you to find a part time or casual position that accommodates your physical and health needs.When you start employment, they remain in touch and continue supporting you as you transition.
 

EPIC Assist not only helps you find employment, but also offers training to help job seekers re-skill for the workforce. EPIC Education Assist delivers nationally recognised courses for people with disability, individuals supporting people with disability, and those entering the disability sector. They also provide workshops to businesses interested in increasing their workplace diversity.  EPIC Assist  works closely with  students to help them attain their qualifications, and go on to bigger and better things. High school students and adults who are completing traineeships, apprenticeships, and accredited courses can access extra study support through their partner organisation, Planning 4 Life.
 

If you need to change employment due to your health or are seeking to return to work, visit epicassist.org or phone 13 EPIC (13 3742) to speak with a consultant.