Inquiry: The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 [Provisions]

The issues I have experienced in terms of cost blowouts for the NDIS as a Medical Practitioner who has worked for clients with severe physical, intellectual, and psychiatric disabilities for 16 years in NSW are as follows.

a) Wasted money and time, apparent implicit bias against the clients, carers, parents, and health practitioners caring for these clients.

1. Money that could be spent on direct client care is spent on appeals to decisions made for eligibility for the NDIS. It is in my experience, that medical opinions and assessments presented to the NDIS, from multiple specialists and general practitioners are disregarded by the NDIS assessors and ruled on according to opaque guidelines and with no clarity as to the NDIS appointed decision makers’ experience and qualification for making the assessment. Given the hurdles some clients with very high needs are subjected to in applying for support it is difficult to assume that the NDIS has incorporated the Disability Standards in their policies. Example: I know of one case of a child born with cerebral palsy, suffered multiple seizures over post-natal and early childhood managed by at least 2 neurologists specialising in childhood disorders from Newcastle and Sydney. These specialists would be regarded as expert witnesses in the legal system but their submissions, for the need for early intervention and high carer and equipment needs for support to the NDIS, were disregarded and a package offered of approximately $5000 for this infant after appeals by her parents the figure was upped to $30000. She needed 24hour care due to daily seizures, support chair and eventually a wheelchair.

Example: One of my nursing (RN) colleagues, who was acting as a case manager for a client was asked at the yearly review whether the client continued to need to be covered by the NDIS service. The client had Down’s Syndrome. This created some doubts that the NDIS manager had actually read the care plan or had any understanding of the disability.

Opinion: There needs to be an independent statutory body made up of medical, paramedical, and consumers with a disability to oversight decisions made and provide guidelines and policies to best practice standards, for assessing disability levels and needs associated with the disability and set education standards for carers and enforce standards of care. Decisions need to be transparent in how that decision was reached and the criteria used to allow discussion and negotiation with the client, carers and health professionals caring for the client.

2. It appears that the cost blow outs for the NDIS could be contained if there is a set cost for services provided and could be similar to how Medicare rebate items are organised for Medicare providers. Country and regional areas could have a cost, accommodation and mileage loading to enable equitable access to care. Example: I know of one person with severe depression and was one of the first people enrolled in a trial of Trans-cranial Magnetic Stimulation for medication resistant depression. He told me that he saw a NDIS provider who consulted with him for a total of 3-4 hours then produced a report for the NDIS, he noted that he was charged $5000 for the time and report.

To write a comprehensive health care plan with recommendations for management

there is a Medicare rebate much less than that figure for medical practitioners.

b) Providers of care and accommodation

1. All providers, public or private must conform to best practise standards for service provision and care of clients. This does not appear to be enforced or any clear mechanism for ensuring conformity with penalties attached.

Example Hopefully, this is a local problem, but when a client with a severe intellectual disability, in his 80s, had been referred to the public hospital system for emergency care, for a severe nosebleed in 2020, he received a nasal pack to stop the bleeding, kept overnight and was discharged the following day with the nasal pack removed just before discharge and no nasal vasoconstrictor for the first day given to the client. The risk for another bleed is highest in the first 2 days. 2 hours after arrival back to his home he had a catastrophic nasal bleed leading to severe hypotension and with the bleeding interfering with his breathing he had a cardiorespiratory arrest while I was trying to control the bleeding, and waiting for an ambulance to return the client to hospital, he needed initial CPR and respiratory resuscitation then airway management and haemorrhage control. He survived and was ok and ended up being kept in hospital for 3 more days.

This is not the only example of less-than-optimal care being offered, that I and other medical practitioners’ have experienced for our clients over the years, as biases are common when the care of clients with disability, women, elderly and those of other ethnic origin to the mainstream are being cared for in ‘mainstream’ facilities. The lack of appropriate treatment increases the probability of creating higher costs for the NDIS if client health changes to higher levels of need in the long term, and a societal cost of increased deaths in the short term.

Opinion:

There needs to be education for health (basically everyone) professionals for managing clients with intellectual, physical, and psychiatric impairments which includes bias awareness training. When I ask graduates from Medicine and Nursing whether they get any significant undergraduate training in this domain, apart from diagnosis of common developmental problems, the answer is no.

There needs to be legislation, or a means of enforcement, so that each service provider is trained, and has the equipment and facilities to manage the needs of these clients and mandatory for this to be included in the curriculum tertiary education level.

c) Oversight and support of agencies

1. There needs to be oversight of the services to check whether the service has been provided and

the number of carer’s needed to manage the client’s needs. This could involve a person responsible signing an itemised service invoice which clearly states the service provided, distance travelled, and hours of service provided, with a copy for the person responsible or the use of technology. Otherwise, there is a risk of the repeat of fake childcare centres and educational colleges being created to channel money from government agencies that could be used for client care.

As a requirement for NDIS funding there needs to be a mechanism to be able to accredit agencies to maintain a high standard of care and protection of client interests and manage those that do not, and create a level playing field for agencies that accept high needs clients.

If there is no support for agencies that care for very high needs clients or those with severe behavioural problems then there will be a potential for agencies refusing to accept these clients, leaving a group that might be underserviced.

Examples: 1. I saw a client late last year who needed 3 carers present due to the risk of unpredictable physical aggression to others, on the part of the client, to protect the health practitioner and each of the carers. It was essential for the client to access health care, to have this level of support as his needs were greater due to behavioural problems. 2. I saw a client this year with Autism and ADHD with a NDIS package who was goaled for 6 months, according to the carer, the judge allegedly said that he preferred not to goal the client but had no place to send the client.

d) Equipment 1. There appears to be no Australian standard for wheelchairs and other aids for disability, or an obligation to conform to any standard of quality or operability. Neither does there appear to be a standard warranty or obligation for reasonable serviceability/repairability for the equipment. Example: Wheelchairs do not have a brake system that are identical or similar as for bicycles, so that the same position for a brake lever for one brand of chair could be a lever for tilting the wheelchair in another brand, others have brake levers next to the wheels or as a foot pedal. There is apparently no water exposure rating for the control panels of motorised wheelchairs I had a client attend an appointment in the rain and the wheelchair developed a fault in the control panel in the rain falling on the arm rest making the chair mostly inoperable other than to go forward and reverse.

2.  Equipment costs for wheelchairs and support equipment.

The prices for wheelchairs can exceed that of a small car. Often the providers are limited in number so it is hard to be able to shop around or find out a price range for equipment with the same features or quality. Opinion: The NDIS needs to be able to provide consumers with the mean or median costs of a wheelchair and the features expected at each price point, I assume that this data can be derived from the NDIS application and payment system. 3.There needs to be no conflicts of interest with service providers having an interest in a company that provides aids for clients in their care or receive a payment for referral, to reduce the money spent by the NDIS.

Thank you for your time.