If you have a chronic illness

This is a guide for people in NSW who have been diagnosed with a chronic illness. It can help you access support services, know your rights and responsibilities at work, and get help with costs. 

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First steps

A chronic illness is a long-term condition that may or may not be life threatening. It is common for it to:

  • need ongoing treatment and management
  • not get better on its own
  • affect your day to day life

Common chronic illnesses include:

  • asthma
  • arthritis
  • diabetes
  • heart disease
  • cancer
  • autoimmune disease
  • osteoporosis
  • back pain 
  • lung diseases like bronchitis and emphysema
  • kidney disease
  • mental health conditions

Seeing a doctor and getting a diagnosis

Not all chronic illnesses are easy to diagnose.

You may need to see more than one doctor or specialist before you have an answer. 

A chronic illness requires ongoing care to help you treat and manage your condition.

It’s important to find a doctor or health care team you trust and feel comfortable with who can:

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If your child has a chronic illness

If your child has a chronic illness, talk to their school for help:

  • developing a health support plan
  • applying for programs
  • applying for financial help
  • making modifications and adjustments at school

Having a child with a chronic illness will normally bring changes for the whole family. You can get help at:

  • Carers NSW Australia - services and support for people with chronic illness or disability, and their carers
  • Variety children’s charity - financial and emotional support for children and their families affected by illness and disability
  • Raisingchildren.net.au - peer support groups and resources for teens with chronic illness
  • Livewire - online community support for teens affected by chronic illness
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When an illness is considered a disability

Disability is distinct from chronic illness. A disability is an ongoing condition that has lasted (or will likely last) at least 6 months and restricts everyday activities. 

Disability can take many forms, and can be caused by: 

  • genetic disorders 
  • accidents
  • illness

An illness doesn't need to be permanent to be considered a disability.

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If you have a dust disease

Dust disease is a lung illness caused by inhaling harmful dust particles. It's most commonly caused by exposure to dust in the workplace, such as at building and construction sites.

The most common cause of dust disease is asbestos dust. 

The symptoms of dust disease

The symptoms of dust disease are similar to other respiratory illnesses, and includes:

  • chronic cough
  • shortness of breath
  • mucus in the airways
  • chest pain

A dust disease can appear years after exposure. It can cause thickening or scarring of lung tissue, and in some cases, lung cancer.

You may be eligible for compensation and help with medical costs if you have a dust disease, depending on how and where you were exposed.

Current and retired NSW workers with a dust disease can also make a claim for no-fault workers’ compensation payments through icare Dust Diseases Care.

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Taking leave and changing work

You don't have to tell your workplace if you have a chronic illness. However, you may want to let them know if it will affect your ability to do your job.

Think about talking to your work if you're likely to need a lot of time off for:

  • sick leave
  • medical appointments

Even if you do tell your work about your illness, you still have a right to privacy. They can't share this information without your consent.

Your rights at work

You're protected from losing your job if taking time off work because of illness if you've:

  • been away less than 3 months in a row (or less than 3 months over a 12-month period)
  • taken paid or unpaid leave, or a combination of both
  • provided proof of your illness, such as a medical certificate

You may not be protected if you've taken more than 3 months off work, even if you have proof of your illness.

Some chronic illnesses are considered a disability under the Commonwealth Disability Discrimination Act. This can include temporary illnesses.

If your illness falls under this definition, your employer must make reasonable adjustments so you can keep working. This can include:

  • adjustable work stations
  • access to car parks, lifts and ramps
  • building modifications
  • flexible work hours

Flexible work arrangements

If your illness is making it difficult to work, you can ask for a flexible work arrangement.

You can do this even if your illness isn’t considered a disability under the Commonwealth Disability Discrimination Act.

A flexible work arrangement can include:

  • working part time
  • working from home
  • flexible work hours
  • job sharing

Leave and notice

You may need to take a lot of time off work if you have a chronic illness. There are paid and unpaid leave options, depending on your situation. 

Most full and part time workers get paid sick leave when they're too sick to work.

If you don't get paid sick leave or have used it all, you may be able to take unpaid leave. Talk to your work about your options.

If you're too sick to work, let your workplace know as soon as possible. They can ask for a medical certificate from your doctor as proof of your illness.

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Getting help with costs

Having a chronic illness can mean paying more for health care, medication and changes to your home.

You may also have less money coming in if you need to reduce your work hours or stop working.

Government payments

There are different types of financial help available from the government, including:

  • Sickness Allowance
  • National Disability Insurance Scheme (NDIS)
  • Disability Support Pension
  • Child Disability Assistance Payment
  • Mobility Allowance
  • Pensioner Education Supplement
  • Telephone Allowance
  • Rent Assistance

If you're a veteran, you may be be able to get an income support payment from the Department of Veterans’ Affairs.

Help with medical costs

Medicare covers all or part of the costs of some medical services, including:

  • doctor or specialist appointments
  • tests and scans
  • most surgery and procedures by a doctor
  • eye tests by optometrists

Check with your doctor or health provider if they bulk bill. If they do, it means you don't have to pay for the appointment. 

If they don’t bulk bill, you can ask in advance: 

  • how much the appointment will cost
  • how much you'll get back from Medicare

Medicare Safety Nets can also help to keep some of your medical costs down. You get back more from Medicare if you spend over a certain amount in a calendar year on:

  • doctor or specialist appointments
  • some tests and scans
Medicine costs

You can get cheaper medicine if:

Equipment and the cost of running it

You may be able to get help with the cost of buying and running medical equipment.

For aids, equipment and rehabilitation appliances, you can get help:

For the cost of running medical equipment, you can get:

Private health cover

You may be covered for hospital, rehabilitation and medical costs not covered by Medicare if you have private health insurance. You will also usually:

  • have shorter waiting periods
  • get your choice of doctor

You may want to contact your private health insurance company before having treatment to check if it's covered.

Insurance payments

If you've taken out insurance and are diagnosed with a chronic illness, you may be able to access a payment to help cover living costs.

The types of insurance available include:

  • income protection
  • critical illness (also called trauma cover or recovery insurance)
  • total and permanent disability

Contact your insurance provider to find out if you are covered and how to make a claim.

Access your super early

You can access your super early if you:

  • are in severe financial hardship
  • have a terminal illness
  • are temporarily or permanently incapacitated
  • have less than $200 in your super fund, or
  • meet compassionate grounds

Help to manage your money

It is common to take a look at your money and budget after finding out you have a chronic illness.

The Financial Information Service at Services Australia can help you understand your financial options. 

The Budget Planner at Moneysmart is an online tool that can help you work out:

  • what you're spending your money on
  • where you might be able to save money

Call the National Debt Helpline on 1800 007 007 for free and confidential financial counselling.

The Financial Rights Legal Centre offers advice and advocacy for people in financial stress.

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Living with a chronic illness

Knowing more about your illness will help you make better decisions about your care and treatment. It can help to:

  • find a doctor you trust and feel comfortable with
  • ask your doctor for a chronic disease management plan to help you manage your illness, and to assist you to access support from other health professionals who can help you
  • talk to your doctor about your medication and the possible side effects
  • ask your doctor about support groups in your local area

Pain management

Managing pain is an important part of living with a chronic illness.

This can mean taking prescription or non-prescription pain relief medication, as well as other treatments, including:

  • physical therapy
  • massage
  • cognitive behavioural therapy
  • acupuncture
  • stress management techniques
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Making changes to your home

Having a chronic illness can mean making changes at home to get the care you need while staying independent.

This can include:

  • home modifications
  • home-based care
  • medical equipment at home
  • emergency call systems
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Transport assistance

Public transport

Most public transport in NSW is accessible. This means you can:

Community transport

There are locally based community transport services you can use for transport to:

  • recreation and shopping areas
  • medical and social services
  • social contact

 

Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS)

IPTAAS helps with the cost of travel and accommodation if you need to travel long distances for treatment that is not available locally.

 

Country Care Link

Country Care Link is a free transfer service for those living in regional or rural NSW who need to come to Sydney for medical appointments or hospital stays.

You can get transfers in Sydney between public transport hubs, medical facilities and where you are staying.

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If you've been diagnosed with cancer

After talking with your doctor about options for your health care, it can be helpful to get information and support so you can start to understand and come to terms with the diagnosis. 

There are also support resources available to help your friends and family.

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Getting support

Finding out you have a chronic illness can be a stressful and complex time. You may have to cope with:

  • physical pain
  • physical limitations
  • higher health care costs
  • changes to your lifestyle
  • difficult emotions

After talking with your doctor about options for your health care, it can be helpful to get support so you can start to understand and come to terms with the diagnosis.

There are many types of help available if you have a chronic illness, including physical, emotional and practical.

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Help at home

Getting support at home with your daily needs can help you live independently at home.

Types of help include:

  • Meals on Wheels delivers nutritious meals to your home, and also offers wellness checks and companionship
  • My Aged Care can help with cleaning, preparing meals, home modifications and personal care to older people
  • National Disability Insurance Scheme (NDIS) offers home help, personal care and home modifications for people with disability
  • Veterans’ Home Care helps veterans with cleaning, washing and ironing, personal care and home modifications

Living with a chronic illness can be isolating. The Red Cross companionship and social support program connects you to your community through:

  • in-home visits
  • outings to cafes, sporting events and other places of interest
  • social phone calls
  • taking part in community interest groups
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Help at work

Getting support at work can help you to do your job while managing your illness. 

The Get Healthy at Work program offers support through:

  • an individual healthy lifestyle check, including risk assessment, advice on lifestyle changes and referrals to coaching programs and other health services
  • a workplace health program that gives you the tools, resources and support to address a priority health area at your workplace

Priority health areas include:

  • mental wellbeing
  • healthy eating
  • physical activity
  • smoking
  • alcohol consumption
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Mental health and emotional support

    You can talk to your doctor about getting access to mental health support services, including:

    • counselling
    • psychology
    • social workers

    You may be able to get some of these services for no or low cost. 

    Support groups

    Support groups can be a useful way to meet and talk to people who are in a similar situation. Support groups can be held in person or online.

    To find a support group, ask your doctor, hospital or community health centre.

    You can also find information and support at:

    Other support services

    For information, help and support, contact:

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    Support for students

    If you're a student with a chronic illness, there are services and support available to help with your studies.

    Financial support  

    The Pension Education Supplement is a regular extra payment to help with study costs.

    You're eligible to get it if you meet study rules and get certain payments from Services Australia or the Department of Veterans’ Affairs.

    If you're eligible for the Pension Education Supplement, you may also be able to get a one-off Education Entry Payment.

    Other support

    Find out about adjustments to teaching, learning and assessment activities in schools at the Education Standards Authority.

    Learn about available classroom support and if you qualify for low or no course fees at TAFE NSW.

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    Support for carers

    A carer provides ongoing, unpaid support to a family member, neighbour or friend who needs help because of:

    • disability 
    • life limiting illness 
    • chronic illness 
    • mental illness, or
    • ageing

    Anyone can become a carer, at any time. If you’re a carer of someone with a chronic illness, there are a range of services and payments available.

    Financial help for carers

    You may be able to get financial help and access to other services if you care for someone with a chronic illness. 

    You may also be eligible for a health care card if you receive a carer allowance or carer payment.

    Mental health and emotional support for carers

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    Legal support

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    Planning ahead

    Depending on how serious your illness is, you may want to make future plans about:

    • your health care
    • if you want to choose an Enduring Guardian or Power of Attorney
    • making or updating your will
    • if you have kids, who will look after them if you can't
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