Submission Regarding Proposed Changes to NDIS for Parliamentary Enquiry – 31st March 2021

My name is Jenny Spiers. I am Occupational Therapist with 38 years’ experience. I have worked with participants under the NDIS scheme for the past 2 year. I would like to add my voice of concerns to the others raised about the proposed changes to NDIS.

When NDIS was initially brought in, I was so proud of Australia taking the innovative initiative to provide support for people with disabilities to live the lives they wanted and hoped for but had been unable to do so. I loved the fact that the scheme did not lump all people with disabilities into a box, rather it actually enabled them to articulate goals and identify the limitations and needs specific to them and the support they needed. The respect, choice and control the scheme gave them, and the people providing care for them, enabled people with disabilities to be human beings and do things the rest of us take for granted. Unless you have a disability or live with a disability, it is difficult to comprehend and fully understand how hard it is to do things in life. I felt the Reasonable and Necessary guidelines helped to guide and give a framework for decision making, although the interpretation of these varied a lot with all parties involved in the scheme.

For me it is so rewarding and encouraging to see participants flourish and be excited by being able to do activities in life such as doing more for themselves, participating in jobs around the house, going out in the community, being able to move about more easily, and having people to socialise with so they are not just stuck at home watching TV. The joy in their faces can lift your heart. Also seeing the positive effect on their family and support workers of being able to give the person with a disability a more active and engaging life has been special.

The current NDIS system is not perfect and has had its flaws as it has developed. The system can be very frustrating to deal with at times, including examples such as:

• Inconsistent and conflicting advice from NDIA staff for both therapists and participants.
• Lack of communication with participants about plans and plan reviews.
• Presenting similar reports for equipment for similar conditions and having different outcomes for participants is frustrating and confusing.
• Long delays with equipment approvals which place the participant and their support staff at risk.
• Report formats and processes being changed with minimal notice or apparent consultation. changing without much notice.
• Report formats being repetitive and cumbersome in content which uses up valuable therapy hours for completion, although I appreciate that detail is required for non-clinical staff to make judgements about funding.

I appreciate that the scheme has not necessarily being fairly accessible to everyone, particularly those people without the language or cognitive skills to navigate it or without support systems to assist them.

I also acknowledge that there are people that have taken advantage of the scheme. This happens in all areas of government processes and life and I believe is in the minority. I do not believe the majority should be penalised for the actions of a few.

All of these areas are possible to improve with alternative solutions to the proposed changes to funding and assessment which I consider to be unfair and not treating people with disability with respect as human beings. We will be judged by the world how we treat the vulnerable in our society.

The proposals to change the access and funding model of the NDIS scheme

The proposals to change the access and funding model of the NDIS scheme is very concerning to me for the following reasons:

• The move to Independent Assessments (using only a handful of standardised assessments) completed by someone who has no understanding or knowledge of the participant is very difficult to do both for the Assessor and the participant.

There are a number of people that I work with who have taken multiple visits to build trust and rapport with before a true picture of their abilities and needs has become clear. Also being interviewed by someone new and admitting that you have problems can be very stressful and demoralising for the person. It also reinforces the heartbreak for their family to be yet again confronted with the disabilities the person they love has.

For example, I have clients with brain injuries who can talk and present very well in social situations but spend time with them and you see just what difficulty they have with things like memory, decision making, information processing and how that impacts what they do each day. An Independent Assessor seeing them on once occasion for 2 hours could not possibly make clear and wise judgements about their support needs without consulting with family, support workers and therapists who have lived and worked with the participant.

Other clients with autism, intellectual disability or psychosocial disabilities need patience, gentleness and time to gain trust and feel confident communicating what they really have difficulty with.

• Independent Assessors can be any allied health professional (Psychologist, Occupational Therapist, Physiotherapist and Speech Pathologist). This raises the concern of asking health professionals to operate outside their scope of practice which places the participant and those who support them at risk. It also lays the Independent Assessor open to professional indemnity issues if making recommendations in an area they are not trained or competent in. As an OT, whilst I have some knowledge and understanding of all aspects of a person’s functioning, I would be reluctant to make judgements about someone’s speech or swallowing for example, or their complex walking needs or their psychosocial support needs.

There are some amazing Speech Therapists and Psychologists; however, it is inappropriate ask them to make decisions or recommendations about a person’s personal care or assistive equipment needs.

Also of concern is the tendency for companies to employ new graduates into these positions as they are cheaper to employ. New graduates cannot possibly have the experience and clinical judgement to make wise decisions about a person’s care and support needs based on completing a few assessment forms. This is likely to lead to inefficiencies and inaccuracies with decision making for funding.

• Having a standard funding package for a score on an Independent Assessment, or for a diagnosis, does not take into account the complexity of needs and support required or what is relevant for the participant. A person with MS can vary significantly in their abilities and support needs. Bulk funding in my opinion will be harder for many participants to operate without clearer guidelines from therapists and support services. I believe bulk funding will also be more open to fraud and misuse.

• I have concerns about the choices for Independent Assessments used. I have used assessments such as the WHODAS and Vineland and whilst they are helpful in indicating a level of disability, they do not give a true picture of the person.

For example, the WHODAS question- How much difficulty do you have dressing yourself? The score scale does not indicate is this a physical or cognitive or emotional problem. Does the person need someone there to prompt and direct them or provide physical assistance? Is it the upper body or the lower body they have trouble dressing? Does the person need equipment they don’t have and what type of equipment? Can they operate the equipment themselves or do they need a support person to help? An Independent Assessor is unable to answer all these questions in the proposed system and therefore in my opinion, they would have difficulty accurately judging the funding and levels of support the participant needs.

• The move away from being participant and goal focused to funding being determined by a tick box system on a handful of assessments is dehumanising and disrespectful of the person and their needs and was never how the concept of the scheme was intended.

• I have significant concerns about the tender process for the contracts awarded to companies for completing Independent Assessments. If the facts are correct as reported, issuing tenders on 19th Feb, 2 days before the close of the consultation period for Independent Assessments, does not follow my understanding of how tenders are meant to occur. It also is a slap in the face for all parties who had put together submissions prior to this point regarding the Independent Assessment process, as it is appears these were worthless as decisions had already been made.

• I am very concerned about the conflict of interest with the companies who have been awarded the tenders for Independent Assessments. Obviously, it is helpful for any Independent Assessors to have experience and knowledge with disability so this limits companies that can be involved; however, the capacity to then influence people to move under the care of other companies within the parent company is of concern.

In summary:

• People with disabilities have struggled for years to be part of society and not be judged or excluded because they are different. We are all disabled in our own way. The disabilities for people on the scheme are just more visible. It is their human right to live the best life possible like the rest of us.
• Many people with disabilities are unable to articulate their needs and difficulties. They need others (family, support services and allied health professionals) that know and understand them to advocate for them. The proposed system does not allow for people with disabilities to have the voice they need.
• I acknowledge that the NDIS scheme has cost the government more than anticipated and that costs need to be managed otherwise it is unsustainable.
• I agree that there are issues with the current scheme that need to be improved.
• Moving away from goal setting specific to the participant, as a basis for funding, reverts to placing people with disabilities in boxes and dehumanising them by making them a number or diagnosis rather than a person. This is a backwards step in my opinion.

• I do not agree that the current proposal for Independent Assessments is going to resolve the issues with the system, or save money, and think that alternative options need to be explored in consultation with people with disabilities, disability organisations and allied health professionals.
• The tender system for contracts to companies for Independent Assessments needs to be investigated to ensure correct processes are being followed.

Please do not let the this change to NDIS go ahead without more assessment and consultation and exploration of other options.

I am happy to discuss the matters further if you would like.

Thank you for taking the time to read my submission and hear my thoughts.

Yours sincerely

Jenny Spiers (B AppSc OT)

Occupational Therapist