Help for carers: support, respite, payments and looking after yourself

Plenty of people do a lot of caring without thinking of themselves as carers. They do the shopping, drive to appointments, sort out medicines, ring every morning, or stay over when things are bad. They’re just being a good partner, son, daughter or friend.

That’s caring. Carer Gateway says one in nine people in Australia are unpaid carers. Recognising it matters, because a lot of help is only offered to people who ask for it as a carer.

You don’t have to live with the person, and you don’t have to be doing it full time. You can share caring with others in the family.

Carer Gateway is an Australian Government program that provides free services for carers. Call 1800 422 737, Monday to Friday, 8am to 5pm, and choose option 1 to reach your local Carer Gateway service provider. You can also ask for a call back on the website.

The first conversation is a planning session about your caring role and what would help. Unless it’s an emergency, it can take 30 to 90 minutes, so find a quiet time. The provider then refers you or books you in for services.

Using Carer Gateway doesn’t affect any services through My Aged Care or the NDIS, or any carer payments.

• Counselling: up to six one-on-one sessions in person, phone counselling (option 2), and group counselling
• Coaching, in person or self-guided online
• Peer support groups, in person and online
• Online skills courses, including on wellbeing and the legal side of caring
• Tailored support packages, which can include planned respite, cleaning, cooking, transport, or equipment for study
• Emergency respite if you suddenly can’t provide care, for example because you’re ill or injured

Respite means someone else takes over the caring for a while, so you can rest, see friends, go to your own appointments or simply have a day off. It can last a few hours, a few days or a few weeks. Many carers feel guilty about it. It’s often what lets people keep caring for longer.

For older people, most respite comes through aged care, so the person you care for usually needs an assessment through My Aged Care on 1800 200 422. Respite at home and in the community comes through the Commonwealth Home Support Programme and Support at Home.

Residential respite needs approval through an assessment. It’s funded for up to 63 days in a financial year, including emergency stays, and extensions of 21 days at a time can be approved. The person pays the basic daily fee and possibly a booking fee, but no means-tested fees or accommodation costs. Not every home offers respite, and approval doesn’t guarantee a bed, so booking ahead helps.

If you suddenly can’t keep caring, call Carer Gateway on 1800 422 737 at any time to arrange emergency respite, where it’s available locally. It’s worth making an emergency care plan so someone else knows what to do.

• In-home respite: a paid carer comes to the home, during the day or overnight
• Day or centre-based respite: often 10am to 3pm at a day centre or club, sometimes with transport
• Cottage respite: an overnight or weekend stay, usually 2 to 3 days, in a community setting
• Residential respite: a short stay in an aged care home, with the same care permanent residents receive

Services Australia has two main payments for carers. Rates change during the year, so check the Services Australia website for current amounts.

Carer Payment is an income support payment for people who give constant care to someone with a disability or medical condition, or an adult who is frail aged. Constant care means roughly the hours of a normal working day, enough to stop you working full time. The person’s condition must be likely to last at least six months, or they must be at the end of their life. Both you and the person you care for must meet an income and assets test. You can do paid work or self-employed work for up to 100 hours in a four-week period and still be paid, as long as you still provide care for a significant part of each day. Travel to and from work, study and volunteering don’t count towards the 100 hours. You can also take up to 63 days of respite from caring in a calendar year.

Carer Allowance is an extra fortnightly payment if you give daily care to someone in their home or yours, and the person needs that care for at least 12 months or has a terminal condition. It has an income test but no assets test. You can get both payments, and claim them together.

If you get one of these payments, you may also get the Carer Supplement, an annual payment made automatically. You must tell Services Australia within 14 days about changes, such as the person moving into an aged care home. The Financial Information Service on 132 300 can explain how payments fit with your situation, for free.

If you’re an employee, the National Employment Standards in the Fair Work Act 2009 give you some protections. Full-time employees get 10 days of paid personal/carer’s leave a year, and part-time employees get a pro-rata amount. You can use it to care for an immediate family or household member who is sick, injured or facing an unexpected emergency. Unused leave carries over.

Casual employees can take 2 days of unpaid carer’s leave per occasion. Full-time and part-time employees can also take unpaid carer’s leave once their paid leave runs out.

Carers who have worked for the same employer for at least 12 months can ask for flexible working arrangements, such as different hours or working from home. Some long-term casuals can too. The employer must reply in writing within 21 days and can only refuse on reasonable business grounds. Your award or agreement may give you more. The Fair Work Infoline is 13 13 94.

Carers are good at putting themselves last. Over months or years, that catches up. Sleep goes, appointments get skipped, friends drift away.

Small things help: keeping your own GP appointments, taking regular breaks before you need them, and having at least one person you can be honest with. Peer support groups through Carer Gateway put you in touch with people who understand. If the person you care for is living with dementia, the National Dementia Helpline on 1800 100 500 is open 24 hours a day.

If you’re feeling distressed and need to talk now, Lifeline is available 24 hours a day on 13 11 14.

• Book respite on a regular basis, not just in a crisis
• Say yes when people offer help, and give them a specific job
• Tell your GP you’re a carer
• Write down an emergency care plan and share it
• Keep up one thing that’s just for you

There may come a point when caring is more than one person can safely do. The signs are often clear in hindsight: you’re exhausted most days, your own health is slipping, the person needs help through the night, or you’re worried about their safety or yours.

That isn’t failure. It’s a sign that the arrangement needs to change. There are several ways it can change, and staying at home with more help is one of them.

Talk with the person you care for, and with the rest of the family, about what’s happening. The Older Persons Advocacy Network (1800 700 600) gives free information on aged care rights and options. Carer Gateway counselling can help you think it through, too.

• Ask My Aged Care for a reassessment, which may lead to more help at home
• Book regular residential respite to give yourself breathing space
• Share the caring with other family members or friends, with clear jobs for each
• Look at a smaller, easier home, or a move closer to family
• Consider whether an aged care home would now suit the person, keeping in mind that it’s a big step with its own assessment, agreement and fees