Quick jump guide:
- Information Linkages and Capacity Building (ILC)
- Appeals process
- Supports available to carers outside of the NDIS
Where do carers fit?
The role that carers play in the NDIS and the types of support they can get has changed since the NDIS first started. While the aim of the NDIS is to support people with disability, there has been an increasing understanding that supporting carers is also important.
Carers cannot join the NDIS. However, there are NDIS rules which outline how they should be involved in the assessment and planning of the person they care for. There are also supports available through the NDIS which can help carers in their caring role, either directly or indirectly.
Click here for the Carers NSW fact sheet ‘Where do carers fit in the NDIS?’
There are a range of official rules and guidelines which outline how NDIA staff are to consider and involve carers when they assess a person with a disability and plan their supports.
The NDIS Act
The National Disability Insurance Scheme Act 2013, which is the legislation establishing the NDIS and the NDIA, requires that the roles of the carer and family of a person with disability are acknowledged and respected.
There are a range of NDIS Rules which specify how the NDIS should work. Some of these Rules include instructions for NDIA staff that relate to carers. For example, when the NDIA makes decisions about what supports they will fund for participants (i.e people with disability), they must consider what is fair to expect families and carers to provide. The NDIA planner therefore has to consider the following things:
- The age and capacity (or ability) of the carer, and whether they can keep caring into the future.
- The amount and type of care they provide and whether it is fair for the carer to do this.
- Any risks to the long-term wellbeing of any of the family members or carers in carrying out their caring role. For example, the NDIA does not expect a child to care for their parents or siblings or to miss out on going to school because of their caring role.
NDIS Operational Guidelines
The Operational Guidelines of the NDIS are designed to assist the NDIA in making decisions or recommendations about people with disability, their families and carers. These Guidelines are based on the NDIS Act and the NDIS Rules and some of these Guidelines refer to the ways in which carers should be involved in the assessment and planning of the person they care for. For example, click here to access the Planning and Assessment Operational Guidelines which states that the role of families and carers should be considered and respected. Their ability to care should also be further developed to support the participant if the participant agrees.
Another Guideline called ‘Supports for Sustaining Informal Support’, click here to access this guideline, outlines how the NDIA needs to understand the impact of the caring role on the carer. This Guideline also states that in some situations carers may need to have a separate discussion about their caring role with NDIA staff. The carer may request to have this conversation without the person they care for, and if appropriate, the NDIA will allow this.
During the planning process the NDIA will speak with carers to ensure their circumstances and ability to continue their caring role is considered in relation to the participant’s support needs. This information will be recorded on the participant’s record so that this can be revisited at review of the plan. The carer may request to have this conversation without the participant and, if appropriate, the NDIA will facilitate this.
Carers can also choose to prepare a written Carer Statement and bring this to the planning meeting or submit it to the NDIA, though this is not compulsory.
A Carer Statement (in written or verbal form) may include:
- How the caring role affects the carer,
- Whether the carer is able and willing to keep caring the same way into the future and the impact, if any, that this has on the carer’s goals
- Other informal supports such as family or friends
- Any other information that would be important for the planner to know.
It is important for carers to talk about their ability to care and to sustain this care in a written statement or at the planning meetings as it helps the planner determine the NDIS supports for the participant and whether the carer needs help in their role.
Click here to watch a video explaining the NDIS Carer Statement.
Nominees under the NDIS make decisions on behalf of the participant. All carers do not have to become nominees, it is only if the participant asks for this or it is required. For example, it may be required if the person cannot make their own decisions.
If the participant has a legal guardian who is making decisions on their behalf then the guardian will be appointed the NDIS nominee.
There are two types of nominees under the NDIS:
i. Correspondence Nominees – can undertake most activities on behalf of a participant except preparing or making changes to a plan and managing the funds.
ii. Plan Nominee – can undertake all activities on behalf of the participant but certain activities can be limited if appropriate.
Nominees have to:
- Include the participant in decision-making and support them to make decisions where possible
- Help the participant increase their decision-making skills
- Make any decisions in the participant’s best interest, representing their wishes.
Children (participants under the age of 18) will have a child representative, who will generally be a parent of the child. The child’s representative will make decisions about the NDIS on behalf of the child. In some cases, a child who is a participant may not need a child representative and is able to make their own decisions. For this to occur the NDIS must be satisfied that the child is able to make their own decisions and it is right for the situation.
Click here for more information about Operational Guidelines for Children.
Click here for more information about nominees under the NDIS.
Click here for more information about the process to become a nominee.
Supports for carers
What supports for carers can be accessed through the NDIS?
The focus of the NDIS is on people with disability, not carers. Carers cannot get their own NDIS individual support plan. However, many carers will benefit from the funded supports the person they care for gets from the NDIS. For example, NDIS funded supports may help build the capacity of the person to become more independent, which may reduce the amount of care the carer needs to provide.
There are a range of supports available through the NDIS packages which may support carers in their caring role, either directly or indirectly. These include but are not limited to:
- Training for carers: Training for carers in caring for a person with disability
- Parenting training relating to disability: Training for parents of children with disabilities to help them in their parenting role, or training for parents with disability to assist them in parenting their children.
- Training for carers and others in behaviour management strategies: Training for carers and others in behaviour management strategies required due to the person's disability.
- Behaviour support/management plan: Planned strategies to limit behaviours of concern developing or increasing. Assistance to the participant and support persons to identify behaviours such as harm to themselves/others and to design specific positive behaviour strategies for the support person.
- Group therapy, family group therapy: Group based interventions to assist in psychosocial or relational issues, required due to the person’s disability.
- Transition planning: A time-limited support to assist the participant, their family and carers to develop a vision for a meaningful life and plan for their changing needs and circumstances.
- Coordination of supports: Assistance to strengthen participant’s abilities to coordinate supports and participate in the community. This includes resolving points of crisis, developing capacity and resilience in a participant’s network and coordinating supports from a range of sources.
- Assistance with decision making, daily planning, budgeting: Provision of time-limited support to assist a person to develop and maintain daily budget, including assisting in planning purchases.
NB: These support items and their descriptions are taken directly from the NDIS website. Click here to visit the NDIS Pricing and Payment section for more information.
Click here to view a video that explains the type of supports carers may be able to receive through the NDIS.
Respite in the NDIS
Initially, many carers were told that respite support was not available through the NDIS. However, since the trial sites first started, both the Chair of the NDIA Board and the Assistant Minister for Social Services have publicly stated that respite is part of the NDIS.
There is an operational guideline called ‘Supports for Sustaining Informal Supports’, which outlines three levels of respite-like supports that people could get through the NDIS, click here to view this guideline. Respite-like supports include replacement support, group-based facilities or in-home support. The level of support given would be determined by the level of support required from carers. The three levels of respite include:
- Level 1: 7 to 14 days per year to allow the carer to attend key activities
- Level 2: 14 to 28 days per year and includes a strategy to build capabilities for future independence.
- Level 3: Equivalent of 28 days per year, when the carer provides support most days and informal support is at risk of not continuing due to the intensity of the support required or severe behavioural issues.
Higher levels of respite may be provided where there are:
- Unstable sleep patterns
- Invasive medical supports
- A lot of behavioural management
- More than one child with disability in the household
- Other assistance actively required overnight.
Higher levels of support may also be provided to ensure a carer is able to continue working or studying, or to put more long-term supports in place.
If a carer is assessed as needing a lot more respite, then a review of the NDIS individual support package is needed to find more long-term support options.
As of August 2015, there is still no NDIS supports called ‘respite’. However, there are a range of supports for people with disability which may give a respite effect for carers, either directly or indirectly. For example a person may be funded for activities and support to help them participate in the community, which may also create an opportunity for the carer to have a short break from their caring role. NDIS supports that may provide a respite effect for carers include:
- Active overnight assistance with self-care: Assistance with, or supervision of, personal tasks of daily living where overnight support is needed and the care giver will not have the option to sleep.
- Assistance with self-care night-time sleepover: Assistance with, or supervision of, personal tasks of daily living where overnight support is needed, but the care giver can sleep when not required to provide support.
- Specialised home-based assistance for a child with disability in order to sustain informal support(s): Specialist assistance in the home required due to additional requirements of the child’s disability; may be provided to strengthen the sustainability of informal supports.
- Assistance with self-care-overnight higher intensity: Assistance with, or supervision of, personal tasks of daily living where intensive overnight support is needed and the care giver will not have the option to sleep.
- Assistance in a host family or alternative family situation: Agreement for a participant with high support needs to stay with a host family.
- Outside of school hours care for teenagers with disability: Required due to the additional needs related to their disability.
- Short term accommodation and assistance in a centre or a group residence: Integrated support for self-care, accommodation, food and activities in a centre or group residence for short periods.
- Vacation care: Required due to additional needs related to disability
- Assistance to access community, social and recreational activities: Support to enable a participant to independently engage in community, social and recreational activities during the week.
- Development of skills for community, social and recreational participation: Training or skills development to enable a participant to independently engage in community, social and recreational activities.
NB: The support items listed and their descriptions are taken directly from the NDIS website, click here to view these items.
There are a range of respite supports available to carers that are not part of the NDIS. For information about respite supports and other carer services available in your area, call the National Carer Advisory Line on 1800 242 636
Commonwealth Respite and Carelink Centres offers respite to carers of people both over and under the age of 65 across Australia. You can contact your nearest centre by calling 1800 052 222.
What happens if the person I care for is not eligible for the NDIS?
If the NDIA decides that a person with disability is not eligible, they or their carer cannot get funded supports from the NDIS. However, the person or their carer can still contact the NDIS to find out about other options.
Information Linkages and Capacity Building
The Commonwealth and State and Territory Governments have developed a policy framework on a new part of the NDIS called Information, Linkages and Capacity Building (ILC). This used to be called Tier 2 supports.
NDIS individual support packages are referred to as ‘Tier 3’ supports. Supports provided through Tier 2 or ILC are designed to help all people with disability through community, service and individual capacity building, and by providing information linkages and referrals.
ILC will also provide some supports to people with disability who do not have an NDIS individual support package. For example people with disability with low level needs, or who just need one off supports. People over the age of 65 who have a disability will also be able to receive some assistance through ILC.
The policy framework states that the following types of support will be provided through ILC:
- Information, linkages and referrals for people with disability and their carers to disability, community and mainstream supports
- Support for carers to continue their caring role
- Capacity building for mainstream services
- Community awareness and Capacity building
- Individual capacity building
- Local area coordination
- Early intervention to reduce the need for more supports in the future
Carers caring for someone with an individual support plan may be able to receive some carer supports through the NDIS and some supports through ILC. Carers who are caring for someone with disability who cannot get an individualised support plan may also be able to get supports through ILC. Examples of supports may include:
- Linking carers and families to social and recreational activities that provide carers with a break from their caring role and connect them with the community
- Activities that promote carer wellbeing such as personal development, peer support and mentoring (where a carer with a lived experience helps a carer new to that experience)
- Linking carers into direct carer support services
- Information about the caring role and how it can be sustained, as well as information about specific disabilities and supports
- Carer programs and counselling
- Decision making and self-advocacy supports
Generally, carer supports provided through ILC will be one-off, low level or occasional supports with the purpose to build the capacity of the carer in their role to help them to continue to provide care.
Governments are now working on the transition of ILC into the NDIS. Therefore the details of how ILC will run are not known at this stage. More information about this will be provided by the NDIA before the end of 2015.
Click here for more information about the ILC policy.
Click here to view the Information, Linkages and Capacity Building Commissioning Draft Framework.
Someone who is not satisfied with a decision made by the NDIA, for example their eligibility, can apply to have their case looked at again by the NDIA. This application needs to be made within three months after the initial decision was made. If the person is still not happy with the decision after the review, they can then apply to the Administrative Appeals Tribunal.
For more information about the appeals process here.
Access the Administrative Appeals Tribunal website here.
Supports available to carers outside of the NDIS
There are a range of supports available to carers that are not part of the NDIS, including respite support, counselling, education and training, peer support and advocacy. For information about what supports and services are available in your area, call the National Carer Advisory Line on 1800 242 636
Last updated: 01 February 2016