Respite care: planning and preparing children with disability, autism or other additional needs

About respite care options for children with disability, autism or other additional needs

Respite care is when someone looks after your child with disability, autistic child or child with other additional needs. Respite care can be good for your child and good for you too.

There are 3 main respite care options:

Formal respite care – this is in-home, centre-based or community access respite and short-term accommodation.
Informal respite care – this is care from family and friends, after-school and vacation care, recreational activities, camps and mainstream child care.
Emergency respite – this is care that might be available at short notice.

To find respite care options in your local area, call Carer Gateway on 1800 422 737, Monday-Friday, 8 am-5 pm. You can also contact your local council or your state or territory disability service. Or you can speak to an NDIS professional by calling 1800 800 110, Monday-Friday, 8 am-8 pm.

Respite care: working out what you need

These questions can help you work out what you and your child want and need from respite care. When you know what you want and need, it can be easier to decide which type of respite care might suit you:

When, how often and for how long would you like respite care?
Are you looking for respite care at home or outside your home?
If outside your home, how far are you and your child willing or able to travel?
Will your child benefit more from one-on-one support with a carer or from support in a group?
Are you considering informal respite care like trusted family or friends caring for your child? Are they available and interested in doing this care?
What is your budget?

Some respite care providers have fees, and others are free. If your child is eligible for the NDIS, ask your early childhood partner or local area coordinator whether you can include funding for respite care in your child’s NDIS plan. If your child isn’t eligible for the NDIS, call Carer Gateway on 1800 422 737 to check whether you can get other funding.

Respite care providers: assessing and comparing options

These questions can help you find out about various respite care providers and compare them. This is a good way to work out which provider might be right for your child with disability, autistic child or child with other additional needs.

Accessibility

For respite care outside of the home, can you and your child get there easily?
Can your child easily access the respite care building and its facilities, including the toilets?

Bookings and fees

How far ahead do you have to book?
What are the costs?
What are your payment options?
What is the cancellation policy? Is there a cancellation fee?

Environment and equipment

Is there a safe space where your child can have quiet time if they’re feeling overwhelmed in a group care environment?
Can your child spend time in the environment before their first respite care experience?
Is the environment safe for your child? For example, is the yard fully fenced with a child-proof gate? It’s especially important to check things like this for informal respite care.
Does the provider have the equipment and facilities to meet your child’s needs? For example, is there an appropriate single room, a height-adjustable bed, a hoist, a shower chair and so on?
What equipment will you need to provide? For example, will you need to bring your child’s hoist sling, feeding pole and so on?
Can your child safely spend time outdoors during respite care?

Respite carers: qualifications, communication, relationships

What are the respite carer’s qualifications and experience?
If family and friends have offered informal respite care, would they be willing to get a working with children (WWC) check or do extra training like anaphylaxis or epilepsy training?
Who will be responsible for giving your child medicines?
How will the respite carer communicate with you?
Before the care, can your child spend time and get familiar with the respite carer while you’re present?
Is the respite carer OK for you to contact them while your child is with them?
Will your child be cared for by the same respite carer at each visit? If several carers will be looking after your child, how will they share important information about your child with each other?

Many respite care providers have waiting lists, so it’s a good idea to ask about this and book ahead if you can. This is especially important if you want respite care during busy periods like weekends or school holidays.

Deciding on a respite care provider: tips

It’s a good idea to draw up a list of pros and cons for each respite care provider you’re interested in. This can help you organise your thoughts and make the decision.

These tips can also help:

Go back to respite care providers to ask more questions if you need to.
Ask your child’s professionals what they recommend.
Talk to other parents about their experiences.
Ask respite care providers for references and check their reviews if available.

Try to have back-up respite care options, in case your first preference isn’t available when you need it. And it’s a good idea to plan how you’ll get respite care in an emergency.

Respite care is an important part of looking after yourself. When you look after your physical and mental wellbeing, you’ll be better able to look after your child. This is why it can help to schedule regular respite care ahead of time, rather than leaving it for emergencies.

Preparing for respite care: children with disability, autism or other additional needs

Here are ways you can prepare your child with disability, autistic child or child with other additional needs for respite care:

Familiarise your child with their respite carer ahead of time, if you can. For example, you could invite the respite carer to a family meal at home or meet them at your local park.
Talk to your child about respite care in ways that they can understand. Explain where the respite care is happening, when, for how long and what to expect during the care. A social story might help with this.
Talk with your child about the good things they can look forward to about respite care. Also ask your child about their concerns or fears.
Start gradually. You might like to limit the first respite care to just an hour or so, and gradually increase the length of care.

If the respite care will be outside your home, it’s important to help your child become familiar with the new setting. Here are ideas:

Visit the respite care setting, whether it’s a formal service or an informal family or friend’s home.
Try to do an activity when you visit the setting. This could be sharing a meal, playing a game and so on.
Choose a special name for the respite care. It should be easy for your child to remember and help your child feel more at ease – for example, ‘Kirra’s house’ or ‘Sunflower Cottage’.
Choose an object for your child to keep with them while they’re at respite care – for example, a special toy, teddy or blanket. Make sure these are clearly labelled with your child’s name so they don’t get lost.

Sharing individual care and other plans with respite care providers

An individual care plan is a document that outlines important information about your child with disability, autistic child or child with other additional needs. It’s important that you and your respite care provider work together to develop this plan. It might also help to involve the professionals who work with your child – for example, your child’s occupational therapist or speech pathologist.

Your child’s individual care plan can include:

your child’s strengths, interests and motivations
your child’s assistance and support needs – for example, with communication, dressing, personal hygiene, toileting, feeding, mobility and sensory issues
your child’s routines – for example, their bedtimes and mealtimes
special equipment or adjustments required at the respite care setting – for example, portable ramps, a height-adjustable bed and so on
the strategies you use to encourage positive behaviour – for example, Positive Behaviour Support.

If your child has special health care needs, allergies or a medical condition, you’ll also need to provide an up-to-date medical management plan that has been prepared by your child’s doctor. There are a few details to include:

Medicines – you should outline what these are and how and when to give them to your child. Also, many respite care providers need medicines prepacked into individual dosage compartments. Your pharmacist can do this for you.
Special equipment – for example, if your child uses a feeding tube and formula, you’ll need to explain this.
Emergency contacts and plans for health emergencies – you should note when to call for emergency assistance and who to call, as well as your child’s GP and usual hospital.

It’s also a good idea to have an emergency care plan ready at any time. This is in case you need someone to care for your child at short notice. You can fill in Carer Gateway’s Emergency Care Plan or use it as a guide.

Your child’s disability and health professionals might be able to help you prepare for your child’s respite care. For example, your child’s speech pathologist or occupational therapist might be able to meet the respite carer to share information about your child and strategies they use to support your child.

Managing the respite care process

Here are tips to help you manage the respite care process:

Be prepared for it to take time to find and organise respite care for your child.
Check in regularly on how your child is going at respite care. This can include asking your child directly and observing your child’s behaviour before and after respite care. This can give you a sense of whether respite care is working for your child.
Check in regularly with the respite carer about your child. You can talk about how your child is going and let the carer know about any changes to your child’s needs or circumstances. You might also like the respite carer to send you regular updates and photos of your child during their care.
If you have feedback or concerns about your respite care provider, talk with the carer, one of your child’s professionals or Carer Gateway on 1800 422 737.
Be prepared to work with the respite care provider on adjustments to suit your child. It’s also OK to look into other respite care options.

Organising respite care can be time consuming and frustrating at times. The first time your child goes to respite care can be challenging for both you and your child. It usually gets easier as your child becomes more familiar with respite care and you and your child become comfortable with the care.