116. Carers ACT

Carers ACT provides support, connection and empowerment for more than 48,000 unpaid family and friend carers in Canberra. These are individuals who provide assistance with the tasks of daily living for another individual who is living with a disability, chronic health condition, mental health condition or are frail aged. Carers ACT provides a range of services from replacement care, respite, assistance with achieving the tasks of daily living, coordination of services, support to navigate the service systems, assistance to return or maintain employment, information and education, social connection and counselling.

We are also the peak agency for carers in the ACT and advocate for inclusion of carers in social policy and service delivery. Carers ACT is a trusted partner in care and without this service carers would not have a safety net or the support to maintain their caring role. Carers ACT has been supporting ACT's carers for 25 years and has a reputation as a quality service provider. In its 2018-19 Budget, the ACT Government committed $1.8 million commitment to establish an NDIS Transition Integrated Service Response program to support Canberrans with support needs not met by the NDIS. This included older Canberrans who were receiving ACT-managed specialist disability services, and funding for advocacy services.

Carers ACT Recommends that the ACT Government continues its investment to support Canberrans living with disability services not met by the NDIS, particularly older Canberrans, including initiating pathways between age, health and disability care to improve their access to necessary support and advocacy services.

Carers ACT applauds the government for endorsing the first three year action plan towards achieving the ACT Carers Strategy. The Strategy was developed be carers and represents their views and needs on the service reforms required to achieve a Canberra that cares for carers. Carers ACT now calls on the government to allocate funding that enables the 25 actions in the action plan to be implemented as a demonstration of its on-going support for more than 48000 carers in the ACT. Funding of the actions will enable the government to deliver services more efficiently and in ways that better meet the needs of the community of carers and the people they care for.

Carers ACT welcomes the Affordable Housing Strategy announced in late October 2018. We commend the government for this strategy and we eagerly await details on the implementation of the actions and recommendations in this strategy. Access to affordable housing is an issue that significantly affects the daily lives of Canberra's carers and the people they care for. This group is one of the most vulnerable groups within the community and the ability to obtain and maintain affordable and stable housing is crucial to their health and wellbeing.

The Government needs to implement actions that refine the interface between ACT Housing and the NDIS as a matter of priority. The NDIS enables a vision of people with a disability living meaningful and participatory lives through exercising choice and control. Currently the level of choice and control that people living with disability and their carers can exercise over independent living options is limited through the availability of suitable properties and the delays in obtaining suitable housing. Access to appropriate, sustainable affordable housing for people living with disability and caring families has been a key policy issue for Carers ACT over several years. It was the catalyst for the Carers ACT 2012 Supported Living Summit and was included in subsequent submissions to the ACT Government including our Response to the ACT Government 2015-16 Budget Consultation – Providing housing pathways for people with disability and caring families (Carers ACT, October 2014).

Carers ACT strongly supports the work of ACTCOSS and other organisations to bring about affordable housing options, particularly for the forty per cent of Canberrans in the two lowest income quintiles who experience the greatest housing stress and high rates of homeless. People with disabilities and carers are included in this population group (ACTCOSS, 2016 and 2018).

Carers ACT commends the ACT Government on the Future of Education initiative and welcomes the investment being made into education. Carers ACT urges the government to rapidly consider the interface between education and the NDIS. Supports for children and young people living with a disability and their families within the education system need to be urgently reviewed to ensure that the correct supports are in place and that the available funding is utilised in ways that maximise the ability for students to reach their goals and potential.

In its 2018-19 Budget, the ACT Government committed $23.2 million to support students with disability and complex health needs in ACT public schools through needs-based funding. Adequate resourcing for students with disability, complex health issues and challenging behaviours was identified by Canberra carers in our survey to inform our response to the ACT Legislative Assembly Standing Committee on Health, Ageing and Social Services Inquiry on the implementation, performance and governance of the National Disability Insurance Scheme in the ACT.

Through this survey carers told us that they would like schools to have an increased understanding of the impact of caring on carers, particularly carers caring for children with non-physical disabilities. Some carers said that schools need training to manage challenging behaviours appropriately and to reduce their reliance on carers attending the school to respond to the needs of children in the classroom, which can contribute to reduced carer workforce participation. Carers also raised questions about the interface between schools and NDIS-funded services (Carers ACT, 2018 pp 17-18). Carers ACT reinforces the recommendation 12 that we made to the inquiry into the implementation of the NDIS: Carers ACT recommends the ACT Government agencies responsible for education and disability and the NDIA work together to develop a process to improve access to schools for children with needs, including funding allocation and other responsibilities.

The National Disability Insurance Agency (NDIA) is responsible for developing the provider of last resort arrangements. This is a service to provide reasonable and necessary supports for people with disability who have high care needs, challenging behaviour or low-level functioning that are not available or are increasingly difficult to access. The lack of a provider of last resort in the ACT is one of the most significant support gaps identified by Canberra carers and Carers ACT. Many NDIS participants live with their parent(s), but this care option will disappear as their carers age and die.

Along with Carers ACT, other agencies such as the Productivity Commission, The Commonwealth Ombudsman and the Joint Standing Committee on the National Disability Insurance Scheme have identified the lack of provider of last resource as an urgent NDIS issue. The Productivity Commission in its Report on NDIS Costs (2017) also recommended that the provider of last resort policies should include specific measure to ensure a supply of respite services. (See Carers ACT response to the ACT Legislative Assembly Standing Committee on Health, Ageing and Social Services Inquiry on the implementation, performance and governance of the National Disability Insurance Scheme in the ACT, March 2018, pp 16-18.

Although the NDIA is to develop a Provider of Last Resort arrangements policy there is still uncertainty about the NDIA’s role and the role of the states and territories in providing this service. The Joint Standing Committee on the National Disability Insurance Report on Market Readiness recommended that the NDIS publicly release its policy on Provider of Last Resort arrangements urgently. (See https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/MarketReadiness/Report/c05). Similarly, there are concerns about the provision of crisis accommodation and the role of states and territories in the provision of mainstream services to people with disability, including emergency accommodation. Carers ACT recommends that the ACT Government urgently negotiates with the National Disability Insurance Agency about arrangements for a Provider of Last Resort, including crisis accommodation for people with disability and adequate alternate care provision for carers, to provide certainty for continuity of care for NDIS participants and their caring families in the ACT.

Carers ACT calls on the government to release the report of the findings from the ACT Legislative Assembly Standing Committee on Health, Ageing and Social Services Inquiry on the implementation, performance and governance of the National Disability Insurance Scheme in the ACT. We call for the government to publish its recommendations and issue funding for the implementation of actions arising from these recommendations. Carers ACT applauds the government for its investment in the development of an ACT Carers Strategy and we call on the government to commit $10 per year per carer to a value of $500,000 per year for the implementation of the actions endorsed in the first 3 year action plan of the strategy. Carers ACT has made a separate budget submission in relation to this.