Carers Disability Snapshot
SGP KP Publishing
Exported on 2024-10-18 03:10:11
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Table of Contents
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 7.1 Short-term accommodation for Peter …………………………………………………………………….10 7.2 Short-term accommodation for Henry ……………………………………………………………………10 7.3 Access to the community for Jordan ……………………………………………………………………..11 7.4 In home supports and personal care for Sami ………………………………………………………..11 7.5 In home supports and personal care for Eleesha ……………………………………………………11 8 Helpful links …………………………………………………………………………………………………………13
FOI 24/25-0367 - DISCLOSURE LOG - DOCUMENTS
SGP KP Publishing – Carers Disability Snapshot
This Disability Snapshot provides general information about carers to assist you in communicating effectively and supporting the participant in developing their goals in a planning meeting. Each person is an individual and will have their own needs, preferences and experiences that will impact on the planning process. This information has been prepared for NDIA staff and partners and is not intended for external distribution.
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SGP KP Publishing – Carers Disability Snapshot
Peak body consulted
In developing this resource we consulted with Carers Australia, the national peak body representing Australia’s unpaid carers.
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2 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 2015 revealed that:
- 26% of primary carers (who provide the most substantial care for someone with disability, chronic illness, mental health condition or is frail or aged) had been caring for between 5 and 9 years and 28% had been caring for between 10 and 24 years
- 33% of carers were providing care for 40 hours or more per week and in many cases, substantially more
- 50% of primary carers identified that caring had one or more negative impacts on their physical or emotional wellbeing
- 36% indicated they were weary and lacked energy
- 12% said they frequently felt angry and resentful
- 48% reported interrupted sleep
- 12% had been diagnosed with a stress related illness.
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3 Carers and the NDIS
Families and carers make a valuable contribution to supporting participants. It is important to take the time to listen to carers and support them in their role. They are often the greatest advocates for participants.
The participant statement in a 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 the participant statement, consider what may be required to strengthen and build the capacity of those providing informal support.
The family questionnaire, usually completed during a planning meeting is an opportunity to capture the experience of the family or care giver and discuss whether they have sufficient support to provide care. A number of organisations have developed pre-planning guidance for families and carers to assist them identify their own caring role. If they choose to, a carer can also provide a carer statement. To access the Carers Australia Carers Checklist refer to the Helpful links section below.
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4 Why respite is important
While families and carers take pleasure and satisfaction in supporting their loved ones, they may experience stress from caring. Carers often need support and relief. They may need to take a break from time-to-time to sustain their own wellbeing, their relationships with others and their capacity to continue caring.
Respite can reduce carers’ stress and give them an opportunity to recharge their batteries. It can also assist them in continuing to provide quality care.
Respite can also assist participants. A period in short-term accommodation or participation in community activities can provide opportunities to experience new environments, make new social connections and in some cases, develop new skills.
5 Can a plan include NDIS funding for respite?
Funding for respite is available under the NDIS. Respite aims to support ongoing caring arrangements between participants and their carers by providing carers with short term breaks from their caring responsibilities.
Participants can purchase a number of supports through their NDIS plan for respite arrangements including:
- short-term accommodation
- temporary periods of extra personal supports so that the participant can remain at home when families and/or carers are not available
- support to participate in community activities, resulting in a break for carers.
The NDIS funds reasonable and necessary supports that facilitate respite and build independence, offer time away from the home or provide 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.
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(s) they are 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 are 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 plan can be used to purchase supports like short term accommodation which offers value for the participant and a break for carers.
Case study examples of respite supports
Taking the time to listen to families and carers may identify innovative supports that facilitate respite. Several examples are included in the case studies below to demonstrate different arrangements.
Short-term accommodation for Peter
Carl, aged 64, and Sophie, aged 59, care for their adult son, Peter, who has cerebral palsy, poorly controlled epilepsy, an intellectual impairment and respiratory problems. 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 three weeks overseas. They don’t believe they can manage taking Peter with them. Carl and Sophie have no friends or family members able to provide care in their absence so they will need to explore alternative accommodation options for Peter while they are overseas.
In this situation funding for short-term accommodation in Peter’s plan will allow his parents to take a break from their caring role. It will also benefit Peter by having some experience with other carers and environments. This is important preparation for when Carl and Sophie won’t be able to care for Peter at home because his parents are getting older. Peter supports his parents’ request.
Short-term accommodation for Henry
Henry, aged 9, has severe autism and regularly has difficulty controlling his behaviour which includes physical and emotional aggression. This behaviour often occurs for several hours at a time and typically at night. Despite therapeutic interventions these behaviours are still occurring and employment of an in-home support worker is not suitable.
Henry’s parents are constantly hyper-vigilant and preoccupied with attempts to reduce behavioural outbursts. They find it difficult to find the time and energy to give enough attention to their other two children or to each other. The situation is taking a significant toll on Henry’s family members and their relationships.
The family would like to include funding in Henry’s plan for regular short-term accommodation. This will allow his parents and siblings to strengthen their resilience and bond as a family by spending time together. It is also intended to give Henry the opportunity to undertake new activities and interact with other children guided by specialised professional carers.
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. He is unable to talk, has behavioural concerns and needs constant supervision and help with daily living activities. Each Saturday Jordan participates in a three-hour group activity that allows him to access the community with his friends, develop social skills and independence. The group meets in a town that is one and a half hours’ drive from home.
Jordan’s parents have asked that the transport costs and a support worker to accompany him to each group session be included in his plan. This will enable them to have respite and to spend time together and with their other child.
Without this support, one parent would need to drive Jordan to the activity and stay in the town while he is participating. The NDIS planner could consider that the transport of this distance to a community activity exceeds ordinary parental responsibilities, provides Jordan with an opportunity to meet his goals and objectives while providing a break for his parents.
In home supports and personal care for Sami
Sami, aged 18, is the sole family carer for her mother, Sara, who has advanced multiple sclerosis and suffers from severe depression. Sami manages the household duties, including looking after her 10 year old brother, as her mother cannot. While Sara receives paid personal care and some household assistance during the day until Sami comes home from school, she is very often in pain and in need of assistance throughout the night. This seriously interferes with Sami’s sleep. Sara feels very guilty about the situation and the negative affect it is having on Sami. This compounds her depression.
As well as paid carer support between the hours of 8.30am and 3.30pm on school days, Sara would like funding in her NDIS plan for some over-night support during the week. This will relieve Sami from providing overnight care, improve her general wellbeing, and her capacity to engage in education. This would also have a positive effect for Sara and her ongoing well-being.
In home supports and personal care for Eleesha
Katerina is the primary carer of her three 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 is becoming increasingly isolated with little interaction with anyone other than her parents. Katerina is also feeling isolated.
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SGP KP Publishing – Carers Disability Snapshot
Eleesha would benefit from the opportunity to develop independence and social skills ordinarily provided by attending child care, she is unable to attend a child care centre 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. This would have the benefit of providing Eleesha with the opportunity to interact with people other than her parents and develop social skills, as well as enabling Katerina to have some time for herself. Katerina is also considering returning to part-time employment.
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8 Helpful links
- While the section on the NDIS and carers on the Carers Australia website is primarily designed to help carers understand the NDIS, it is 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 engaging with the planning process. It also provides planners with some useful insights into the range and diversity of supports which carers provide and the ways in which caring can impact on 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.
- Carer Statement examples. These may help planners understand why in some cases it may be important for both the participant and the NDIA for carers to have an opportunity to tell their own story without having to do so in front of the participant.
- How to speak NDIA guide on the Endeavour Foundation website. This can assist in understanding some of the communication problems which arise between NDIA professionals, participants and their carers.