Carers Disability Snapshot

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fOI 25/26-3216 document 4

The document was released under the Freedom of Information Act 1982 by the National Disability Insurance Agency.

exported on 2026-06-17 23:42:36

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SGP KP Publishing – Carers Disability Snapshot

1 Peak body consulted ……………… 4 2 About carers ………….. 5

3 Carers and the NDIS ………. 6

4 Why respite is important ……. 7

5 Can a plan include NDIS funding for respite? …. 8

6 How can I help carers to sustain their capacity to provide informal supports? ….. 9

7 Case study examples of respite supports ……….. 10

Short-term respite for Peter …….. 10
Short-term respite for Henry …… 10
Access to the community for Jordan … 10
In home supports and personal care for Sara ………… 11
In home supports and personal care for Eleesha …….. 11

8 Helpful links ………………….. 12

The document was released under the Freedom of Information Act 1982 by the National Disability Insurance Agency.

Table of Contents – 2 Page 38 of 334

SGP KP Publishing – Carers Disability Snapshot

This Disability Snapshot provides general information about carers to help you to communicate effectively and support the participant to develop their goals in a planning meeting. Each person is an individual and has their own needs, preferences and experiences that impact the planning process. This information has been prepared for NDIA staff and partners and isn’t intended for external distribution.

This document was released under the Freedom Act 1982 by the National Disability Insurance Agency.

Peak body consulted – 3

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Peak body consulted

To develop this resource, we consulted with Carers Australia, the national peak body representing Australia’s unpaid carers.

About Carers

The sustainability of the National Disability Insurance Scheme (NDIS) depends on the capacity and willingness of family and friend carers to provide informal supports and unpaid care.

Australian Bureau of Statistics’ data from a 2022 survey on Disability, Ageing and Carers shows:

4.5% of Australians were primary carers, up from 3.5% (861,600 people) in 2018
6.1% of women and 3% of men are primary carers.

Primary carers reported experiencing negative impacts on their physical or emotional wellbeing, including:

40% said they were weary and lacked energy
8% said they frequently felt angry and resentful
31% reported interrupted sleep
20% frequently felt worried or depressed
7.5% had been diagnosed with a stress related illness.

SGP KP Publishing – Carers Disability Snapshot

FOI 25/26-3216

3 Carers and the NDIS

Families and carers make a valuable contribution to supporting participants. It’s important to take the time to listen to carers and support them in their role. They’re often the greatest advocates for participants.

The participant statement in the participant’s plan contains important information about the participant’s life, their living arrangements, relationships and plan goals. As part of the discussion to complete their participant statement, think about what could help strengthen and build the capacity of their informal supports.

The family questionnaire, usually completed during a planning meeting, is an opportunity to record the family or care giver’s experience. Use this to talk about whether they have enough support to continue to provide care. Some organisations have developed pre-planning guidance for families and carers to help them identify their own caring role. If they choose to, a carer can also provide a carer statement. Go to the Helpful links section below to access the Carers Australia Carers Checklist.

SGP KP Publishing – Carers Disability Snapshot

4 Why respite is important

While families and carers take pleasure and satisfaction in supporting their loved ones, they may experience burnout from caring. Carers often need support and time to recharge. They may need to take a short break to sustain their own wellbeing, relationships with others and capacity to continue their caring role.

Respite can reduce carers’ stress and give them an opportunity to rest and restore their energy. It can also help them to continue to provide quality care.

Respite can also help the participant. A period in short term respite, or participation in community activities, can give them opportunities to try new environments, make new social connections and in some cases, develop new skills.

SGP KP Publishing – Carers Disability Snapshot

5 Can a plan include NDIȘ funding for respite?

The National Disability Insurance Agency.

Funding for respite is available under the NDIS. Respite aims to support ongoing caring arrangements between the participant and their primary informal supports by giving them short term breaks from their caring responsibilities.

Participants can buy supports through their NDIS plan for respite arrangements including:

short term respite
temporary periods of extra personal supports so the participant can remain at home when families or primary informal supports aren’t available
support to take part in community activities which can give their informal supports a break.

The NDIS funds reasonable and necessary supports for respite and to build independence. These can provide time away from the home or extra supports in the home. Examples are provided in the case studies below. These supports can reduce the demand on carers and give them a break from caring responsibilities.

SGP KP Publishing – Carers Disability Snapshot

6 How can I help carers to sustain their capacity to provide informal supports?

Let carers know that, while the NDIS supports the goals and aspirations of the participant they’re caring for, it recognises that supporting family and friend carers in their caring role is also important.

Allow carers to explain to you the type of care and amount of care they provide. Carers should feel comfortable to be able share any concerns they have about their capacity to continue providing their current level of care. If they’re unwilling to raise these issues in the presence of the person they care for, a written carer statement can be provided. Refer to the Helpful links section below for examples.

Explain to carers how the participant’s funding can be used to buy supports like short term respite. This can provide value for the participant and a break for carers.

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SGP KP Publishing – Carers Disability Snapshot

Agency.

7 Case Study Examples of Respite Supports

The time to listen to families and carers if they identify innovative supports that can provide respite. Several examples are included in the case studies below to demonstrate different arrangements.

7.1 Short-Term Respite for Peter

Housing Insurance Agency under the Freedom of Information Act 1982 by National Disability released document Carl, aged 64, and Sophie, aged 59 are the primary informal supports for their adult son, Peter, who has cerebral palsy, poorly controlled epilepsy, an intellectual impairment and respiratory problems. Peter lives with Carl and Sophie who provide Peter with daily high intensity supports. carl and Sophie immigrated to Australia in 1990 and would like to travel to their home country to visit their elderly parents and catch up with other family and friends. They plan to spend two weeks overseas. They don’t think they can manage taking Peter with them. Carl and Sophie don’t have any friends or family members who can provide care in their absence, so they will need to explore other accommodation options for Peter while they are overseas.

in this situation, peter meets the criteria for short term respite. Including funding for short term respite in Peter’s plan will allow his parents to take a break from their caring role. It will also help Peter have experience with other carers and environments. This is important preparation for when carl and sophie aren’t able to care for Peter at home because theyre getting older. Peter supports his parents request.

7.2 Short-Term Respite for Henry

Henry is 9 years old with level 3 Autism that significantly impacts his cognition, language and social skills. He regularly has difficulty controlling his behaviour, which includes physically lashing out and emotional dysregulation. This behavior often occurs for several hours at a time, and regularly during the night. Even with therapeutic interventions, these behaviors are still frequent, and employment of an in-home support worker isnt suitable.

hanrys parents are constantly alert and preoccupied with attempts to reduce behavioral outbursts. They find it difficult to pay enough attention to their other two children, or to each other. The situation is taking a significant toll on henrys family members and their relationships.The family would like to include funding in henry’s plan for regular short term respite. This will allow his parents and siblings to strengthen their resilience, and bond as a family, by spending time together. It also helps give Henry the opportunity to interact with other children, guided by specialized professional cares.

7.3 Access To The Community For Jordan

jordan aged 13 lives with his parents and sister in a regional area. he has severe intellectual and language delays and attention deficit hyperactivity disorder. hes unable to communicate verbally displays behaviours of concern and needs constant supervision. he also needs help with his daily living activities. Each saturday jordan takes part in a three hour group activity that lets him access the community with his friends and develop social skills and independence. The group meets in a town thats one and half hours drive from Jordans home.

jordans parents have asked that funding be included in his plan to use for transport costs and a support worker to go with him to these sessions. this gives them respite, and the opportunity to spend time together and with their other child. Without this support, one parent would need to drive jordon to the activity and stay in the town.

FOI 25/26-3216 SGP KP Publishing – Carers Disability Snapshot

A document released under the Freedom of Information Act 1982 by the National Insurance Agency.

while he is joining in. The NDIS planner decides this transport distance to a community activity exceeds ordinary parental responsibilities. It does give Jordan the opportunity to meet his goals, while providing his parents with a break, so can be funded.

7.4 In home supports and personal care for Sara

Sami, aged 18, is the sole family carer for her mother, Sara, who has advanced multiple sclerosis and severe depression. Sami manages the household duties, including looking afterher 10 year old brother, as her mother can’t. Sara receives paid personal care and some household assistance during the day until Sami comes home from school. Sara is often in pain and also needs some help during the night. This seriously interferes with Sami’s sleep and her ability to concentrate at school. Sara feels guilty about the situation, and the negative effect it’s having on Sami. This unfortunately increases her depression.

While it’s normal for families to care for and support each other, we wouldn’t normally expect 18-year-olds to provide this level of care for their parents or siblings.

As well as paid carer support between 8:30am and 3:30pm on school days, Sara would like funding in her NDIS plan for some overnight support during the week. This will relieve Sami from providing overnight care, improve her general wellbeing and her capacity to focus on her education. This would also have a positive effect for Sara and her ongoing wellbeing.

7.5 In home supports and personal care for Eleesha

katerina is the primary carer of her 3 year old daughter Eleesha, who has a congenital heart disease, stroke and developmental delay. Complications from her medical conditions have resulted in the loss of a kidney, damage to her spleen and a reduced ability to fight infections. Because of Eleesha’s susceptibility to infections, she’s increasingly isolated and has little interaction with anyone apart from her parents. Katerina also feels isolated. Although Eleesha would benefit from the opportunity to develop independence and social skills by going to child care, she’s unable to attend a child care centre. This is because contact with other children increases her risk of infection.

katerina would like Eleesha’s NDIS plan to include funding for regular in-home support. Thiswould give Eleesha the opportunity to interact with people other than her parents, and develop social skills she’d normally develop at childcare. It would also give katerina some time for herself.

SGP KP Publishing – Carers Disability Snapshot

Helpful Links

While the section on the NDIS and carers on the Carers Australia website is mainly designed to help carers understand the NDIS, it’s also a useful resource for NDIA staff and partners to understand the carer’s perspective.
Carers Australia Carer Checklist. Carers are encouraged to fill out this checklist prior to getting involved with the planning process. It also gives planners some useful insights into the range and diversity of supports which carers provide, and the ways in which caring can impact their own lives and wellbeing. It may be useful to provide the checklist to carers and family members to help them prepare for a planning meeting.
Common NDIS Phrases You Need to Know article, Endeavour Foundation website. This can help people to understand some of the common language that’s used in navigating the NDIS.