To the Joint Standing Committee on the NDIS

RE: Independent Assessments

I am writing to express my concerns about the proposed changes to the NDIS. As you know, the NDIS was developed to provide individualised funding for people living with disability to allow them to access supports and services needed to live an equitable life. It was developed following many years of advocacy.

For many this was the first time they had received any support for their disability, and for those navigating existing State-run disability systems this was the first time they had choice and control over what supports they received and who delivered them. As a disabled person, a carer of minors with disabilities, and an employee of a disability support organisation I am incredibly saddened that such drastic changes have been conceptualised and are being pushed through without any meaningful consultation with disabled people. I know the impact this will have on many of my community, colleagues, and clients. I already see the fear and frustration this is causing daily.

It is not, and will never be, acceptable to ignore the advice of medical and allied health professionals with long-standing relationships with participants. It is not, and will never be, acceptable to prioritise the findings of a stranger based on a restrictive assessment tool that are obtained in a single meeting. This is particularly inappropriate for those with complex or rare disabilities.

I myself have visited many medical and allied health workers during my lifetime, the majority of which have no knowledge of my disability. Some of whom have Googled it in front of me. Unfortunately, my 36-year long journey to find appropriate professionals of my own and news that the assessment contract has been awarded to a company whose rollout of the LAC program has been deplorable means I have absolutely no confidence that an expert on my condition would be provided. Nor should I be subjected to going through this process yet again when I have a suitably qualified team who can provide what is needed.

Linked to this, it is not, and will never be, acceptable to deny prospective participants the right to appeal the decision of said stranger.

It is not, and will never be, acceptable to deny people access to the NDIS for failing to take part in an independent assessment. Many people living with disability have experienced ongoing pain, suffering and trauma. Many have lived through the physically and emotionally draining process of having to paint the worse-case-scenario picture of their lives year after year in a bid to receive support.

If existing services are able to provide evidence of disability, and if as a society we have a single shred of compassion, we cannot be subjecting people to again recount the negative aspects of their lives to gain or retain access to the scheme. It is not, and will never be, acceptable to put people through this again when the NDIS was meant to be aspiration based and put a stop to this deficit-focused way of accessing supports. It is not, and will never be, acceptable to force us to be re-assessed when we were promised that this scheme would not be like this.

It is not, and will never be, acceptable to determine a participant’s support budget based on the results of a standardised assessment conducted by a complete stranger prior any discussion around the participant’s goals. It is not, and will never be, acceptable to state that participants will receive a bucket of funding to use on their goals and expect us to believe that people will not have to choose between goals when deciding where to allocate it.

I see many instances each week where people are providing reports written by professionals with extensive knowledge of their support needs, yet are not receiving adequate funding for supports to cover their goals and are having to choose between daily living supports or employment supports. I have no confidence that a one-off meeting with an independent assessor would capture all of these funding needs.

It is not, and will never be, acceptable to deny us choice and control.

Recently the NDIA community engagement team held an in-house webinar on changes to independent assessments and planning that my colleagues and I attended. For reference, a minimum of 75% of our staff has a disability or lived experience of disability, which is not the status quo in this industry. Some of the questions we were asked included “What are the traits and skills that you most want in an assessor?” and “What makes this process the most accessible that it can be? For example, is it by holding the assessment in your home?” and “How can we ensure independent assessments are delivered in a way that considers and promotes cultural safety and inclusion?” A full list of questions is available at the end of this submission. This is not adequate community consultation. Yes, instead of asking scheme participants what works for them they were asking service providers. These are not appropriate questions to be asking service providers regarding changes that will have a significant and detrimental impact on the lives of disabled people in this country. If you want to know what your target community thinks you need to actually ask them.

In addition, you also need to listen to the feedback you are being provided and not refuse to accept it because it is not what you are looking for. It was clear that our questions, frustrations and concerns as service providers and scheme users were not welcome. They did not want our feedback on any of these changes, rather they wanted us to give them ideas on how to communicate the changes to scheme participants in a way that would receive the least backlash. As somebody with a bachelor’s degree majoring in Community Development, I found this highly inappropriate and as a scheme participant I found this to be downright disgusting.

Whilst I acknowledge that there is a place for these assessments, namely for those who do not have the capacity to access their own assessments due to geographical or financial barriers, this is not and will not ever be acceptable for those not facing such barriers.

It is not, and will never be, acceptable to make changes to our scheme without consulting with us. Decisions about our lives should be made by us and alongside us. They should not be done to us. These assessments cannot be introduced if disabled people in this country are to ever be able to escape the systemic marginalisation they experience.

“Nothing about us without us.”

List of questions asked of service providers by the NDIA Community Engagement team on Independent Assessments and Access

Assessments and Access

1. What will people who apply for the NDIS need to know about the independent assessment process? What is the best way to provide this information?

2. What should the NDIA consider in removing the access lists?

3. How can we clarify evidence requirements from health professionals about a person’s disability and whether or not it is, or is likely to be, permanent and life long?

4. How should we make the distinction between disability and chronic, acute or palliative health conditions clearer?

5. What are the traits and skills that you most want in an assessor?

6. What makes this process the most accessible that it can be? For example, is it by holding the assessment in your home?

7. How can we ensure independent assessments are delivered in a way that considers and promotes cultural safety and inclusion?

8. What are the limited circumstances which may lead to a person not needing to complete an independent assessment?

9. How can we best monitor the quality of independent assessments being delivered and make sure the process is meeting participant expectations?

10. How should we provide the assessment results to the person applying for the NDIS?

Questions

Page 4

Question 9:

How should check-ins be undertaken? Under what circumstances is a check-in needed? Who should be involved in a check-in?

Question 10:

How often should we check-in with participants in different circumstances?

Question 11:

How can the NDIS ensure positive relationships between participants and planners?

Question 12:

How can the NDIA best support participants to transition to this new planning model?