(Private Members' Statement, 17 May 2018, Legislative Assembly, NSW Parliament)

Over 18 per cent of Australians live with disability including 51 per cent of Australians over 65. Unfortunately people with disability are still more likely to be removed from their family, excluded at school, denied appropriate housing, imprisoned, suffer sexual assault, or die of preventable death. Without the right support, many are at risk of social isolation and financial hardship.

People with disability should have full opportunities to contribute to society and make decisions about their lives and this belief has led to the adoption of the National Disability Insurance Scheme, which is about inclusion and personalised support and care. The NDIS aims to provide people with disability a greater control and choice from a broad range of services and support to meet their needs and their priorities.

But I am increasingly hearing from constituents reporting that it is difficult to get into the NDIS or to get appropriate plans established. I understand my federal counterparts are hearing similar concerns. The system is due to be fully in place in New South Wales on 1 July and serious gaps have been identified that could result in crisis for some people.

Until recently, the NSW Government planned to cut all funding for independent disability advocacy and information even though the NDIS clearly does not fund this function. The NSW Disability Advocacy Alliance initiated an excellent campaign – Stand By Me – which I proudly supported, and the government responded with a commitment to retain funding for two years.

Independent disability advocacy services have been vital in helping people with disability access their entitlements and find solutions to barriers for care. As people transfer into the NDIS system, the need for independent disability information and advocacy does not reduce but becomes more vital as people need help to navigate what is a new and evolving system, while ensuring they do not fall through the cracks.

But the extensive expertise built up over many years about supports, services, equipment and aids is at risk with information and advocacy services now reporting that they have to reapply to secure any of their current funding and their grants are being cut if they receive NDIS Information, Linkages and Capacity building grants even though these do not fund advocacy work.

Disability organisations say that core advocacy funding is being stripped completely when the department finds they have received an ILC grant. Others report that the insecurity of funding means they are losing experienced staff and expertise.

ILC grants are for activities that build capacity to help mainstream services and community activities become more inclusive. This is a distinctly different role to advocacy with individuals and their families through: case management; mediation; representation and appeals of decisions affecting them. It also covers advocating for systemic change to government when laws and policies don’t work. The ILC grant guidelines clearly state that the program will not fund individual or systemic advocacy or legal representation.

ILC grants are clearly not for advocacy services and should not be used as an excuse to cut funding to independent disability advocacy. These organisations need secure funding to continue their vital work and people with disability need their expertise and advocacy.

Funding for information and advocacy should not end in two years. Advocacy services will continue to be needed to help people with disability through the NDIS system and ensure that all services, programs and facilities become more inclusive. Independent advocacy can signal early warning signs to government about problems before they escalate and help resolve individual problems negotiating barriers.

The NSW Council of Social Services has identified massive cost benefits for the state with permanent independent disability advocacy funding. People with disability will benefit from better support, care and inclusion. Without advocacy services, people with disability are more likely to end up in crisis services funded by the state, including crisis accommodation, hospital and prison.

NCOSS identified multiple services that Ageing, Disability and Homecare NSW currently provides that will not be picked up by the NDIS, such as specialist health services, justice, housing, education, family support and transport. For example, experts who develop mealtime plans for people with dysphagia so they are not at risk of choking could disappear.

The state should invest in independent disability advocacy to ensure the NDIS system delivers and to protect vulnerable people, promote inclusion and ensure no-one falls through the cracks. We will only achieve full inclusion if there is a whole-of-government response to people with disability.

I call on the government to reinstate full ongoing funding for independent disability information and advocacy services to ensure that people with disability can live their best lives and be fully part of our community.