Discussion paper

The NDIS one year in: experiences of carers in the Hunter trial site

National Disability Insurance Scheme (NDIS) Caregivers Disability Disabilities Informal care New South Wales

The National Disability Insurance Scheme (NDIS) presents an unprecedented opportunity for Australians with permanent and significant disability to receive the lifelong support they need to pursue their goals and participate in their communities. The greater choice and control offered by the NDIS promises not only to benefit people with disability but also the family members and friends that provide informal support to people with disability, their carers.

The first year of the four initial NDIS trials has produced significant achievements, but has also highlighted a range of key challenges. The National Disability Agency (NDIA) has been responsive to the challenges identified and has clearly stated its intention to continuously improve the Scheme based on stakeholder feedback during the trial period.

Carers NSW has been closely following the rollout of the NDIS in the NSW trial site in order to identify any issues emerging for carers. While people with disability, not carers, are the focus of the NDIS, sustainable informal care arrangements will be critical for the Scheme to succeed.

This paper draws on Carers NSW research, consultation and policy analysis from throughout the first year of the NSW trial. It summarises key issues arising for carers and intends to contribute to the ongoing refinement of NDIS design and implementation.

Benefits for carers in NSW

Carers NSW supports the introduction of the NDIS in NSW and acknowledges that it is already changing the lives of many people with disability and their carers for the better. Benefits experienced by carers in NSW include:

• Significant improvements in the amount, quality, value and flexibility of support received by the NDIS participant since entering the Scheme;

• Flow on benefits for carers, including the ability to return to work, reduced stress and less financial pressure;

• Some funded supports directly supporting the caring role, including domestic assistance, respite and family therapy; and

• Positive working relationships with NDIS planners.

Challenges for carers in NSW

While many carers in NSW have had positive experiences of the NDIS, a number of key issues have come to our attention.

Understanding the NDIS

Many carers in NSW – within and outside the trial site – are struggling to understand, and therefore to embrace, the NDIS. This is largely due to:

• limited and inconsistent information;

• unclear language;

• uncertainty about the Scheme rollout at national level; and

• inadequate communication with carers about what to expect.

Carer recognition and assessment

The NDIS policy framework recognises that:

• The role of carers in the life of the person they care for should be acknowledged and respected;

• Planners should determine whether the informal support provided by carers is sustainable and reasonable; and

• Where appropriate, a plan should build the capacity of carers to provide support.

While Carers NSW welcomes these key values, we have identified the following issues:

• Treatment of carers by NDIS planners has varied and some carers feel their perspective has not been adequately taken into account; and

• A separate conversation between the planner and the carer is only a possibility, not a formal entitlement for carers.

Carer supports and services

Carers of NDIS participants are likely to benefit from the funded supports provided to the participant, and the NDIS policy framework also allows for some supports to be funded especially to sustain informal care arrangements. However:

• A large number of people with disability will not be eligible for the NDIS, and therefore they and their carers will not receive funded supports;

• It is clear that the NDIS is not about carers, and that carers of NDIS participants are not entitled to referral or funded support in their own right through an NDIS package;

• Carers of people with disability may no longer have access to Commonwealth funded carer supports outside the NDIS, since funding is being redistributed into the NDIS and Commonwealth Home Support Program; and

• In NSW, people with disability who are not eligible for the NDIS, and all carers of people with disability, may no longer have access to State funded disability and carer supports in future, as the NSW Government will withdraw from providing disability services once the NDIS is fully rolled out.

Carers NSW is highly concerned about the major gap in carer support that will result from current model and urgently calls upon the Commonwealth and NSW Governments to address this.

Preparing and implementing the plan

A number of capacity building initiatives are underway in NSW to prepare people with disability and their carers for the NDIS. However:

• Not all carers are able to access these opportunities, and many carers still feel underprepared when they attend planning sessions;

• Many carers feel that the NDIS has created more work for them, leaving them overwhelmed;

• Many carers are finding NDIS plans difficult to read, understand and implement.

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