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 NSW

If you would like to further information or to refer yourself or family for any of our services please contact us on (02) 8732 5700 or email reception@cfcc.org.au.

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

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

Clinic Support Work

The CFCC NSW PASS team attend a variety of adult and paediatric clinics in NSW. We provide case management, psychosocial assessment and social work services and assist our members with accessing resources and navigating the health system. For more information contact   nswsupport1@cfcc.org.au or call (02) 8732 5700

Hospital Support

Our Team make inpatient hospital visits to our clinic locations and are available to visit other locations on request. If you would like to consult with us or have one of our friendly team visit you, please contact nswsupport1@cfcc.org.au or call (02) 8732 5700

Palliative Care Support

We offer assistance and support with end-of-life care specific to the individual and family’s needs.

Crisis Care Support and Information Helpline

We have knowledgeable staff at our two office locations, in both Sydney and Newcastle that are available to assist you if you need specific resource information during a crisis. Contact (02) 8732 5700 for more information or review our staff page for the Program and Support Staff in your area.

Counselling

We can provide face to face counselling at our clinic sites and are able to provide phone counselling and support to members. For long term counselling needs we can provide referrals to the appropriate local agencies that can provide more localised support.

Personalised Advocacy and Practical Assistance

We can assist you to navigate medical services or other community organisations such as Centrelink, FACS, NDIS. We can provide support by being a voice for you in your community and getting answers to the questions you have. We are knowledgeable in government concessions and benefits and can assist you in working on applications such as health care cards, mobility allowance, variety grants, pharmaceutical benefits scheme safety net, essential medical equipment payment and other benefits.  We also provide practical assistance with the following: NDIS, Sports Programs, Equipment, Employment, Housing, Travel, Family Support, and Education.

Grant Sponsored Funding

CFCC NSW often has time-limited programs funded through grant programs. Some examples of our programs are our PT training program and nebuliser and nebuliser consumables programs funded by Perpetual Limited and Newcastle Permanent Charitable Foundation.  Our grant funding often has a short turn around, so programs can change quickly. If you would like to learn more about our current programs and to see if you are eligible to participate please contact our PASS manager Deidre Gorrie at nswsupport1@cfcc.org.au.

VitABDECK Subsidy

CFCC NSW is able to offer a discounted VitABDECK to community members. For more information please contact nswsupport1@cfcc.org.au

Regional Support

We recognise the importance of connecting and supporting out regional NSW members.  According to the Australia Cystic Fibrosis Data Registry 2013 more than a third of our NSW CF community live in a regional area. 49% of whom are adults. We understand the challenges that can occur when living remotely and our goal is to provide equitable services and support to all of NSW community. To learn more about how we can support our regional members please contact nswsupport1@cfcc.org.au or call (02) 8732 5700

Interclinic

Interclinic is an essential part of the PASS team program. It provides an opportunity for NSW CF speciality clinics to engage with other multidisciplinary teams to explore and share knowledge regarding the biopsychosocial impacts of living with Cystic Fibrosis. Each year we aim to have presenters and speakers who can provide new insights and clinical experience to the NSW adult and paediatric teams. Some of our past presentations have been on new developments in treatment and care practices, impact of CF on sleep, NDIA/NDIS, and the ACI CF Model of Care. We hold two interclinic sessions a year.  If you are a health professional and would like more information please contact nswsupport1@cfcc.org.au or contact 02 8732 5700

Education Resources

The CFSmart education program was developed by Cystic Fibrosis WA in conjunction with Cystic Fibrosis Community Care (CFCC) with input from parents, teachers and health professionals around Australia.

CF Smart is an online tool with a range of educational resources about CF for parents, teachers, students, and health professionals. The resources include e-learning modules for teachers, information booklets, student health plans, lesson plans and activities, school camp checklist, bookmarks, posters and educational films. There is a range of hard copy materials available in NSW, or they can be downloaded from the CFSmart website.

CFBuzz App

CFBuzz is an app built specifically for adults with cystic fibrosis and helps assist in CF self-management. It offers the ability to record personal health information, monitor progress against goals and keep track of all your contacts and appointments. CFBuzz was built from the ground up with consultations from both the cystic fibrosis community and leading medical professionals.

CFBuzz.org

CF Buzz has been developed by CFCC NSW to provide the CF Community with a website dedicated to the Australia Cystic Fibrosis Community.

Information Packs and Resources

We can provide information packs to schools, families, medical centres, and other community groups on request. If you would like digital copies of these resources, please visit the CFWA page Resources and Publications to access them online. To request support with CF education please contact our PASS team at nswsupport1@cfcc.org.au or phone (02) 8732 5700

Centrelink Benefits

You may be eligible for a variety of allowances through Centrelink

Disability

  • Disability Support Pension (DSP): To be eligible for this pension you must be 16 years or older and not able to work more than 15 hours per week. To assess your eligibility for DSP, a report from your treating doctor or specialist on your disability, injury or illness is required. It will also request a work and medical assessment.  You may be required to enrol in a Program of Support.
  • Sickness Allowance: For when you are temporarily unable to work because of a medical condition. You are eligible if you if you are employed, including self-employment. 
  • Essential Medical Equipment Payment: An annual payment of $154.00 which assists with extra costs associated with essential medical equipment such as home ventilators, oxygen concentrator and nebulisers.
  • Pharmaceutical Benefit Scheme Safety Net (PBS): Assists with the costs of medications after you reach a certain monetary threshold. For general patients it is $1,521.80 and for concession card holders this is $384.00. Once the threshold is met the cost of medications is $6.40 for general patients and free for concession holders.

Work and Study

  • Mobility Allowance: Helps people with a chronic health condition who are working and are unable to use public transport due to needing assistance or concerns about infection control. It is not means tested.
  • Newstart Allowance (21 years over): If you are unemployed, Newstart Allowance provides financial support while you are looking for work.
  • Youth Allowance (16 – 24 years): Eligibility is you must be a young person who is studying, undertaking training or an Australian Apprenticeship, looking for work, or if you are sick.
  • Special Benefit: For if you are in severe financial need due to circumstances outside your control and you cannot receive any other Centrelink pension or benefit.
  • Austudy: provides financial help if you are aged 25 years or more and are studying or undertaking an Australian Apprenticeship full-time.

Carers

  • Carer Allowance: Parents of children with CF automatically become eligible for the carers allowance and health care card. When your child turns 16 you will still be eligible if they are continuing studying or doing an apprenticeship. You may also be eligible for this allowance if you are caring for an adult with CF. Additional eligibility is you must be an Australian resident.
  • Carers Payment: An income tested benefit, for carers who are providing constant care in the home for someone with a severe disability or severe illness.
  • Carer Adjustment Payment: A one-off payment of up to $10,000 dollars for families who are experiencing extreme hardship. Additional eligibility criteria required.

More information about Centrelink benefits and allowances can be found here

Concession Cards

  • Centrelink: There are two main types of concession cards that Centrelink providers: Health Care Card and the Pensioner Concession Card.  Concessions may include a reduction on many bills, including medical bills and pharmaceuticals.
  • Companion Card: Managed by National Disability Services to assist people with a significant permanent disability who require a care support person or a companion.

Transport, Parking & Accommodation

  • Isolated Patient Transport and Accommodation Assistance Scheme For NSW or Lord Howe Island residents who live more than 100km for their treatment specialist or their combined trips to treatment specialists exceed 200kms a week. Doctor referral is required, and your specialist will need to complete part 3 of this form.
  • Transport Disability Incentives and Subsides  This scheme provides support to NSW residents who are unable to use public transport due to a disability.  It is not means tested but has other eligibility requirements.
  • Westmead Adult Clinic Concession Parking Concession parking is available to long-term patients and their carers who attend the hospital more than once a week, patients who need to attend more than twice a week, for people experiencing financial hardship and for people with a healthcare card, pensioner concession card, gold veterans affair card or an RMS mobility parking permit.
  • Royal Prince Alfred Hospital Adult Clinic Concession Parking Concession parking is available to patients who attend hospital longer than one week, who attend more than twice weekly or who may attend cardiac rehabilitation education, exercise classes or health promotion classes. Other eligibility requirements are you hold a current health care card, blue pensioner concession card, gold veterans affair card or an RMS mobility parking permit.
  • Sydney Children’s Hospital Network Concessions are available. SCHN recommend you speak with your Clinical Support Administrator.

Housing

  • Centrelink Rent Assistance Available if you are receiving a Centrelink payment which is more than the base rate of Family Tax Benefit and pay rent.
  • Housing Pathways Private rental assistance and social housing assistance for Australian citizens or permanent residents residing in NSW who meet income eligibility. 

Energy Rebates and Energy Accounts Payment Assistance (EAPA) Scheme

  • NSW Gas Rebate: Helps eligible NSW households pay their natural gas bill.
  • Family Energy Rebate: Help NSW family households with dependent children who have received the Family Tax Benefit payment from the Federal Department of Human Services.
  • Low Income Household Rebate: Assists individuals who hold eligible concessions cards issued but the Federal Department of Human Services or the Department of Veterans Affairs.
  • Life Support Rebate: Assists families and individuals to pay electricity bill if they are required to use an approved energy-intensive equipment in the home such as oxygen, enteral feeding, TPN, CPAP, BiPAP, and other equipment.
  • Medical Energy Rebate:  helps individuals who are unable to regulate body temperature in extreme (hot or cold) temperatures. 
  • Energy Accounts Payment Assistance (EAPA) Scheme: Helps individuals and families when they are experiencing a short term financial crisis or emergency to pay their gas or electricity bill.

For more information about rebates please visit here

Dental Care

Public dental care is available to NSW residents who reside within the boundary of a Local Health District.  For children and young persons to be eligible they must have for a Medicare care and be less than 18 years of age. For adults they must also meet the children’s requirements and hold or be listed as a dependent on a Health Care Card, Pensioners Concession Card or a Commonwealth Seniors Health Card. 

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.

Continence Financial Support

Most people with incontinence use continence products such as pads, catheters or bedding protection to manage their condition. Some people require these products on a long-term basis, which can become very expensive. For more information visit the Continence Foundation of Australia website or contact a continence nurse advisor at the National Continence Helpline on 1800 33 00 66.

Angel Flight

Angel Flight coordinates non-emergency flights to assist country people to access speciality medical treatment.  All flights are free and may involve travel to medical facilities anywhere in Australia.  If you are interested in a referral, please speak with CFCC NSW Programs and Support Services staff.  For more information click here

Variety Smile Medical Support Program Grant

Variety New South Wales provides individual grants to children ages 0-18 years who are living with a chronic illness or disability. Grants areas are mobility equipment, vehicle modification, nutritional feeds and nappies, wigs, medical equipment, technology, educational resources and rare disease. If approved, the grant may be claimed by sending in receipts for reimbursement, or for more expensive items the supplier may be paid directly. If you are interested in a referral please contact: nswsupport1@cfcc.org 

Ronald McDonald Family Retreats

Six holiday retreats throughout Australia are available for families of children with a serious illness. For more information click here. If you are interested in a referral please contact: nswsupport1@cfcc.org 

Ronald McDonald House

Ronald McDonald Charities has several houses in NSW locations such as Westmead, Wagga Wagga, Tamworth, Randwick, Newcastle, and Orange. Some locations require a referral from a medical provider. Please click here to review the individual location by clicking on the link and selecting “Staying with Us” - For more information click here.

Yurana Holiday Homes

Located in Ulladulla, NSW, Yurana provides a range of holiday accommodation for children affected with serious illness. If you would like a referral please contact: nswsupport1@cfcc.org.

The Shack

Located in Shoalhaven Heads, NSW, The Shack provides low-cost accommodation for children experiencing chronic illness. If you would like a referral please contact: nswsupport1@cfcc.org.

Community Aid Agencies

  • Salvation Army: 13 72 58
  • St Vincent De Paul Society: 1 300 VINNIES (846 6437)
  • Benevolent Society: 1 800 236 762
  • Carer NSW: 1 800 242 636

Emergency Support

  • NSW Domestic Violence Line: 1 800 656 463
  • Homelessness: Link2Home 1800 152 152
  • Lifeline: 13 11 14
  • Beyondblue: 1 300 22 4636
  • Kids Helpline: 1800 55 1800

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