NDIA Accountability Project

Recommendations regarding ILC transfer and age discrimination within NDIS eligibility criteria

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D21/1826000

29 October 2021

Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 260 www.aph.gov.au

deeply regretted.

Dear Committee

Re: Inquiry into the Current Scheme Implementation and Forecasting for the NDIS

Thank you for the opportunity to provide feedback on the current scheme implementation and forecasting for the National Disability Insurance Scheme (NDIS).

The Disability Council NSW (the ‘Council’) is a statutory body that provides independent advice to the Minister for Families, Communities and Disability Services on matters that affect people with disability in NSW and their families and carers.

The Council strongly supports an inquiry into how the NDIS is implemented and funded, and what supports are or should be available for people with disability in addition to the NDIS. Ensuring the future sustainability of the NDIS is critical to facilitating access to essential high-quality services and supports for people with disability.

Below are specific comments in relation to the terms of reference. a. The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS funding, including: I. the availability of support outside the NDIS for people with disability (e.g. community-based or ‘Tier 2’ supports), and II. the future of the Information, Linkages and Capacity Building grants program; Information, Linkages and Capacity Building grants program

The Council notes that the Information, Linkages and Capacity Building grants program (ILC) was transitioned to the Department of Social Services (DSS) to align with other national disability policies and programs.

The Council recommends that the ILC be transferred back to the National Disability Insurance Agency (NDIA) to ensure closer alignment with the National Disability Insurance Scheme (NDIS). Transitioning the program to DSS has resulted in a disconnect with the NDIS, and different reporting requirements have created greater complexity.

If it is not feasible for the ILC to be transitioned back, the Council would strongly encourage that a working party be established, including representation from the NDIA, to oversee the awarding of ILC contracts.

In relation to the ILC more broadly, the Council recommends that initiatives be funded for a more extended period, ideally four to five years and that each include an evaluation strategy (quantitative and qualitative) to determine effectiveness and opportunities to scale up successful programs.

The Council is concerned that bias exists within some ILC funded initiatives. Family advocacy, for example, cannot be accessed if a child is in a support class within a mainstream school.

In addition, a service gap exists in relation to needs of Culturally and Linguistically Diverse (CALD) communities. ILC grants are needed to assist CALD communities to access the NDIS as well as funding for tribunals and advocates.

b. The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories and the Commonwealth, particularly aged care, health, education and justice services;

To ensure seamless service delivery for people with disability, it is essential that all levels of government work collaboratively and that there is close alignment with the NDIS. This must also extend to the policy context.

It is essential that policy frameworks in different jurisdictions are aligned to reduce confusion and ensure the service system is easy to navigate. In relation to mental health, for example, the policy context is fragmented and complicated. In the ACT, for instance, a service provider needs to be cognizant of both federal and state policies, of which there are multiple such as the Federal Mental Health Act 1996, the ACT Mental Health Act 2015, the National framework for recovery-oriented mental health services plus the National Safety and Health Service Standards 2nd Ed. 2021. How these various pieces of legislation, frameworks and standards related to the NDIS is also unclear. On a practical level, it has meant that it is often difficult to

Transitioning People to the NDIS

transition people to the NDIS to ensure continued access to services. This has negatively influenced people greatly as many programs, such as Partners in Recovery, lost their funding when the NDIS was established.

In terms of the interface between the NDIS and employment services, we know that people with disability are having difficulties accessing Disability Employment Services (DES) because they are told to access the NDIS.

There is also great confusion in the Education system about the role of the NDIS and whose responsibility it is to fund key supports. For example, we know of one instance where a request was made to a school for a support worker to enable a child with disability to go on an excursion. The request was declined, and the family told that NDIS funding was required to pay for the support worker if the student were to participate with classmates on the excursion.

Detailed information is required to guide school principals.

In relation to the provision of information, there is an ongoing need for accessible information for multiple audiences to navigate the service system. A particular gap is information for older Australians with an acquired disability who feel their only option is to enter a nursing home.

The Disability Gateway is currently not user-friendly, and the Council would strongly encourage it to be updated through a co-design process with the end-user(s).

c. The reasons for variations in plan funding between NDIS participants with similar needs,

   I.   the drivers of inequity between NDIS participants living in different parts of Australia,
  II.  whether inconsistent decision-making by the NDIA is leading to inequitable variations in plan funding, and
 III.  measures that could address any inequitable variation in plan funding;

The Council is concerned that the additional challenges faced by people in rural and remote areas to access appropriate services and supports are not acknowledged and addressed adequately through their NDIS plan funding.

Linked to this issue, the Council is also concerned people in higher socioeconomic areas obtain more funding within their plan even though Specialists’ fees are set by the NDIA, and so there should not be a geographic variability in cost.

The Council is also aware of instances where some people are having their NDIS funding reduced without having participated in a planning review and without explanation.

  • negative influence on an individual’s quality of life is dramatic as essential services, and supports are reduced. The NDIS model assumes that with support, people will get better over time. This is not, however, the case for many people, particularly people with multiple chronic disabilities. Ongoing support is essential to ensure people with disability are safe and to enable them to live their best life.

  • The NDIS appears to be premised on the belief that individuals or their families can contribute financially to services and supports. Again, this may disadvantage people in lower socioeconomic areas.

  • Consistent use of high-quality decision-making tools would help reduce inequitable funding and ensure that people with disability can access the services and supports they need. Examples of best practice decision aids can be found via the Ottawa Hospital. Please refer to www.cihi.ca/en/submit-data-and-view-standards/methodologies-and-decision-support-tools and https://decisionaid.ohri.ca/ for more information.

d. How the NDIS is funded, including:

    I. the current and future funding sources for the NDIS,
   
    II. the division of funding between the Commonwealth, States and Territories,
   
    III. the need for a pool of reserve funding;

It is currently difficult to access funding information. While the Council notes that an Annual Financial Sustainability Report is available on the NDIS website, the report is quite technical.

To promote transparency, the Council strongly encourages that funding information is made available in various accessible formats, including Easy Read, for a broad range of audiences, including NDIS participants, their families, service providers and policymakers.

The Council also suggests that consideration be given to the use of language when discussing the NDIS. Discussions around ‘sustainability’ have the potential to increase anxiety among participants.

Claims that the NDIS costs more than Medicare are also not accurate and misleading. It is essential that people with disability are not made to feel a burden on society.

e. Financial and actuarial modelling and forecasting of the scheme, including:

  I.   the role of insurance-based principles in scheme modelling, and
 
  II.   assumptions, measures, and methodologies used to forecast and make projections

about the scheme, participants, and long-term financial modelling;

The Council encourages the Committee to examine lessons learnt from the Government’s approach to Aged Care funding and recent recommendations made by the Royal Commission into Aged Care Quality and Safety.

f.

The measures intended to ensure the financial sustainability of the NDIS (e.g. governance,

oversight and administrative measures), including:

   I. the role of state and territory governments, and the Disability Reform Ministers

   Meetings,

  II. the arrangements for providing actuarial and prudential advice about the scheme,

  and

 III. the way data, modelling, and forecasting is presented in public documents about the

   NDIS, (e.g. NDIS Quarterly Reports and Reports by the Scheme Actuary), and

IV. measures to ensure transparency of data and information about the NDIS;

As outlined above, it is essential that all aspects of NDIS funding are made publicly available in accessible formats. This should include the extent of fraudulent behaviour and the financial impact on the NDIS.

More broadly, it is important to acknowledge the speed of change in relation to the introduction of the NDIS and the confusion this creates. Meetings with the NDIA often do not allow for true consultation, and the consultation process, as a result, does not feel authentic.

h. Any other related matters.

The Council is concerned that there is systemic age discrimination within the current eligibility criteria for the NDIS. For instance, if an older Australian (over 65) acquires a disability, such as acquired brain injury through stroke or paraplegia through a motor vehicle accident, they are ineligible for funding through the NDIS. This is despite aged care funding being inadequate to cover the provisions older Australian’s with an acquired disability requires.

Thank you once again for the opportunity to contribute to this important inquiry. If you have any questions, please do not hesitate to contact the Council at DisabilityCouncil@facs.nsw.gov.au.

Yours sincerely

Dr Jill Duncan Deputy Chair, Disability Council NSW