Respite Care for Parents of Children With Disability

What Does the NDIS Expect Parents to Provide?

The care that all parents give a child of the same age. The NDIA says it's usual for parents to provide almost all the care young children need, whether or not the child has a disability.

The NDIA's guideline gives examples: it's reasonable to expect parents to help young children go to the toilet or settle them to sleep at night. Respite funding doesn't replace general parenting responsibilities, and it can't be used for babysitting or nannying.

What changes as children grow is the gap. A 4 year old needing help to dress is typical. A 14 year old who still needs full help to dress, shower and eat, and supervision all day, is getting care well beyond what's typical for their age. That extra care is what NDIS supports are for.

When Does the NDIS Fund Respite for a Child?

When the child needs a large amount of daily, disability-related care from their parents, and the family needs more support to keep caring.

For short-term accommodation for children, the guideline says the NDIA needs to know the child lives with you, needs more than 6 hours a day of active disability-related support from you, well beyond what's usual for their age, and that other supports such as support in the family home have been funded or considered. At least one more factor also has to apply, including:

• another member of the household has a major disability or developmental delay
• a parent or main carer has serious health concerns, is ageing, or is at risk of not being able to keep caring
• there are identified risks in providing support in the home
• there's a risk the child could enter out-of-home care because of their support needs
• other in-home supports aren't widely available where you live

Those tests are for stays away from home. In-home support is usually the first step, and it's paid from the child's flexible Core supports when it meets the NDIS funding criteria.

What Does In-Home Respite for a Child Look Like?

A support worker comes to the house and cares for your child while you rest, go out, or spend time with your other children.

• An after-school shift so you can take a sibling to sport
• A Saturday morning so you can do the shopping or sleep in
• A regular sleepover so you get one unbroken night's sleep
• Help during school holidays, when you're doing more of the care

The NDIA's guideline gives the example of a 4 year old autistic girl who needs one-on-one support all day and wakes through the night. She had regular in-home supports, but her mother, the sole carer of four children on the NDIS, said it wasn't enough of a break, and short-term accommodation was added to the plan.

What About Children Under 9?

Children younger than 9 usually start with the NDIS early childhood approach, through an early childhood partner, rather than a local area coordinator.

Early childhood partners help families get supports and connect with community and mainstream services. If your child has an NDIS plan, talk to your early childhood partner or my NDIS contact about the care you're giving and the break you need.

How Do You Ask for Respite for Your Child?

Describe a typical day and night of care, compared with other children the same age, and what happens to the family without a break.

• Write down the care you give in a typical 24 hours: personal care, supervision, night waking, behaviours of concern
• Note what's different from other children your child's age
• Explain the effect on you, your health and the rest of the family
• Bring reports from your child's therapists or doctors that describe their support needs
• Say what would help, for example a 4 hour shift each week and one sleepover a fortnight