With the first phase of the National Disability Insurance Scheme (NDIS) set to launch in July, Bond University’s Centre for Law, Governance and Public Policy has been charged with the task of creating a plain-English, user-friendly NDIS guide for people with an intellectual disability and their carers.
Funded by a Practical Design Fund grant from the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, the project has been commissioned by the Endeavour Foundation which provides support to more than 3350 people with intellectual disability, a number of whom will be impacted by the new legislation.
“In the first instance, it was vital to get feedback from the frontline to ascertain what resources and tools families will need to navigate the NDIS,” said the Executive Director of Bond’s Centre for Law, Governance and Public Policy, Professor Patrick Keyzer.
“As such, the project has involved an extensive consultation process, speaking to people with a disability, their parents, carers and guardians, experts, advocates, advisers and other stakeholders from all over Australia.”
One of the major concerns that emerged from the research was the haphazard and insecure planning engaged in by some parents or carers of people with intellectual disability.
“It was difficult to hear ageing parents and carers say that they hoped their child died before them because they had no confidence that their son or daughter with a disability would be cared for when they were gone,” he said.
“This concern was also raised in research I conducted almost 20 years ago. Hopefully the NDIS will be a catalyst for people to think about the future, plan for the future, and use tools that will help to give them peace of mind.
“Another concern raised in our research was the need for an assurance from both sides of politics that NDIS funding will be adequate and on-going so that the plans people make for the future will be achievable in the long-term.”
Professor Keyzer also encountered confusion as to how the NDIS will link in with other service providers and concern about the possible loss of existing services and funding.
“The community is calling out for clear and simple guidelines outlining exactly how the NDIS will operate and how they can access the support it offers.”
The resources being developed by the Centre for Law, Governance and Public Policy will include a comprehensive, plain English Guide to Successfully Planning for an NDIS and a series of fact sheets.
“Based on our research, the Guide will explain the NDIS in detail, as well as clarifying issues such as the balance between parental responsibility and the rights of people with disability,” said Professor Keyzer.
“It will also include useful information on planning devices such as wills and trusts to help parents set up a legal framework for future care arrangements.”
The NDIS planning toolkit will be released by the Endeavour Foundation in the months leading up to the official launch of the NDIS in July. It will be available from the Foundation and online.