Research: Causes and contributors to deaths of people with disability in Australia – NDIS Commission’s response to recommendations

1. The scoping review

The NDIS Quality and Safeguards Commission (NDIS Commission) engaged Professor Julian Trollor, Chair, Intellectual Disability Mental Health, Faculty of Medicine, Department of Developmental Disability Neuropsychiatry at the University of New South Wales to undertake research to review the causes and contributors to deaths of people with disability, and to identify population mortality trends and risks concerning the deaths of people with disability.

You can read about the scoping review and an outline of the actions we are taking in response to the scoping review.

In addition to the Findings and a Summary of key findings, Professor Trollor and Dr Salomon also gave us a document setting out a Summary of recommendations. The Summary of Recommendations include:

  • practice improvement recommendations made in the New South Wales, Victorian and Queensland death review reports to reduce respiratory related deaths and deaths related to choking, improve epilepsy management and reduce lifestyle risks; and
  • Professor Trollor and Dr Salomon’s recommendations focusing on how a broad disability death review function should be performed.

This documents sets out our more detailed response to the recommendations. We have focused on responding to the practice improvement recommendations made in the New South Wales, Victorian and Queensland death review reports to reduce respiratory related deaths and deaths related to choking, improve epilepsy management and reduce lifestyle risks. We outline how our regulatory arrangements, particularly the NDIS Practice Standards and related quality indicators, currently address these risks and additional actions we will take in response to the scoping review.

We have noted Professor Trollor and Dr Salomon’s recommendations focusing on how a broad disability death review function should be performed. We outline our response to them in section 6 below.

2. Reducing respiratory related deaths

2.1 The recommendations

Page 7 of the Summary of recommendations lists 11 practice improvement recommendations to address avoidable respiratory deaths and decrease the risk of aspiration pneumonia among people with disability drawn from the recent reviews of deaths of people with disability conducted in New South Wales, Victoria and Queensland.

  1. All people with disability should be routinely screened for vulnerability to aspiration and/or pneumonia. All clients should be screened for risks such as swallowing problems, reoccurring chest infections, mobility limitations, GORD, poor oral health, diagnosis of cerebral palsy epilepsy or Down syndrome, prescription of multiple medications, including psychotropics.
  2. All people with identified risks should be referred for specialist assessments and support. Eating and swallowing assessments should be conducted by qualified specialists on all at risk individuals. People with recurrent respiratory infections should be referred to specialist respiratory clinicians.
  3. Recommendations regarding mealtime safety made by specialists should be embedded into mealtime management plans and followed exactly.
  4. Disability and health care staff as well as family members should be provided with additional education and training with the view of promoting awareness of:
    • Why and how people with disability are vulnerable to respiratory conditions and aspiration.
    • The importance of safe feeding techniques and precisely following all mealtime recommendations relating to feeding, food consistency and supervision while eating.
    • Signs and symptoms of pneumonia, and the need to seek immediate medical assistance when they occur (irrespective of whether the person has seen a doctor recently or not). Education should stress that often there is only a short window of time between the infection developing and potential death.
  5. Regular medication reviews should occur with the view of reducing psychotropic use and polypharmacy where appropriate in order to minimise risk of aspiration.
  6. People with epilepsy should have regular access to specialist support and medication reviews to decrease risk of aspiration.
  7. People who are potentially vulnerable to pneumonia should be vaccinated against pneumococcal pneumonia as well as influenza in a timely manner.
  8. All people should be supported to maintain good oral hygiene and have regular access to dental care.
  9. Staff should closely monitor people receiving enteral feeding (including PEG feeding) for signs that aspiration could be occurring, and for early signs of respiratory infection and seek medical care immediately.
  10. Organisations should put guidelines and policies in place to mandate the above recommendations to ensure that they are implemented and monitored and that action is taken when breaches occur.

Additional education, training and resources should be provided to health staff regarding conducting swallowing assessments and providing written guidance to people with disabilities and disability organisations. We note the concerns raised by the NSW Ombudsman in their 2014-17 report that in transitioning to the NDIS people would only be able to access funded speech pathology services through the health care system. Mainstream health care staff may also require additional training to tailor their practice to the needs of people with disabilities. While we understand that interim funding for swallowing therapies is now being considered within the NDIS, a permanent funding solution is yet to be finalised.

2.2 Current regulatory approach

2.2.1 Which people with disability are at risk?

The NDIS Commission will target additional action we take in response to the recommendations to reduce respiratory related deaths so that we focus on improving the quality and safety of supports and services provided to the NDIS participants who are at increased risk of respiratory related death or serious injury.

The reviews conducted in New South Wales, Victoria and Queensland focused on the deaths of people with disability living in supported disability accommodation or receiving services from specialist disability services providers. They did not include all people with disability.

Many NDIS participants are not specially vulnerable to respiratory related deaths. Many NDIS participants do not seek or receive supports in relation to their healthcare, medication reviews, or mealtime or feeding supports.

2.2.2 Which NDIS providers and workers are involved?

The NDIS Commission will target additional action we take in response to the recommendations to reduce respiratory related deaths to those NDIS providers and workers who are most likely to be providing supports relevant to an NDIS participant’s eating, swallowing, health assessments or medication management.

Registered NDIS providers

The NDIS Commission regulates all registered NDIS providers through the registration requirements and NDIS Practice Standards that apply under the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018.

Registered NDIS providers must comply with the NDIS Practice Standards that apply to the class of supports for which they are registered to provide.

Registered NDIS providers of a number of classes of support would not be expected to have any involvement in supports relevant to an NDIS participant’s eating, swallowing, health assessments or medication management.

For example, registration to provide personal mobility equipment or vehicle modification would not enable a registered NDIS provider to provide mealtime supports, manage medication or arrange health checks or screening for an NDIS participant.

Our registration groups are set out in the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018 and are based on the classes of support in the NDIS Support Catalogue, which is published by the National Disability Insurance Agency (NDIA).

We consider that the following registration groups are most likely to involve the provision of supports relevant to an NDIS participant’s eating, swallowing, health assessments or medication management, although not all registered NDIS providers in these registration groups will be involved in providing such supports:

Class of supports

Class 4: high intensity daily personal activities

Class 7: assistance with daily personal activities

Class 10: specialist positive behaviour support

Class 14: community nursing care

Class 15: assistance with daily life tasks in a group or shared living arrangement

Class 17: development of daily living and life skills

Class 18: early intervention supports for early childhood

Class 25: participation in community, social and civic activities

Class 28: therapeutic supports (speech pathology)

Class 33: specialised support coordination

Class 34: specialised supported employment

Class 37: group and centre based activities

Registered NDIS providers who are registered to provide most of these classes of supports are required to comply with the Core Module of the Practice Standards, which is in Schedule 1 to the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018. (Noting that registered NDIS providers who are registered to provide community nursing care (class 14) or therapeutic supports (class 28) are required to comply with the Module 6: Verification in the Practice Standards, which is in Schedule 8 to the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018.)

The Core Module of the Practice Standards includes the following standards:

  • Access to Supports: Each participant can access the most appropriate supports that meet the participant’s needs, goals and preferences (sch. 1, cl. 18).
  • Responsive Support Provision: Each participant can access responsive, timely, competent and appropriate supports to meet their needs, desired outcomes, and goals (sch. 1, cl. 21).
  • Safe Environment: Each participant can access supports in a safe environment that is appropriate to their needs (sch. 1, cl. 24).
  • Medication Management, which applies to providers that are responsible for administering medication to participants: Each participant requiring medication is confident that their provider administers, stores and monitors the effects of the participant’s medication and works to prevent errors and incidents (sch. 1, cl. 26).

The National Disability Insurance Scheme (Quality Indicators) Guidelines 2018 provide the detailed indicators for each of the NDIS Practice Standards.

One of the quality indicators for the access to supports practice standard requires that reasonable adjustments to the support delivery environment are made and monitored to ensure it is fit for purpose and each participant’s health, privacy, dignity, quality of life and independence is supported.

One of the quality indicators for the responsive support provision practice standard requires that, where a participant has specific needs which require monitoring and/or daily support, workers are appropriately trained and understand the participant’s needs and preferences.

One of the quality indicators for the safe environment practice standard requires that, where relevant, work is undertaken with other providers and services to identify and treat risks, ensure safe environments, and prevent and manage injuries.

The quality indicators for the management of medication practice standard require the registered NDIS provider to demonstrate that:

  • records clearly identify the medication and dosage required by each participant, including all information required to correctly identify the participant and to safely administer the medication;
  • all workers responsible for administering medication understand the effects and side-effects of the medication and the steps to take in the event of an incident involving medication; and
  • all medications are stored safely and securely, can be easily identified and differentiated, and are only accessed by appropriately trained workers.

The Core Module of the Practice Standards also requires registered NDIS providers to identify and manage risks, including risks to participants, and to have a quality management system that promotes continuous improvement of support delivery and an incident management system that ensures incidents are acknowledged, responded to, well managed and learned from (sch.1, cll. 10, 11 and 14). It also requires that each participant’s support needs are met by workers who are competent in relation to their role, hold relevant qualifications and have relevant expertise and experience to provide person-centred support (sch. 1, cl. 15).

Registered NDIS providers who are registered to provide high intensity daily personal activities must comply with Module 1 of the Practice Standards, in addition to complying with the Core Module of the Practice Standards. Module 1 of the Practice Standards is in Schedule 2 to the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018.

Module 1 of the Practice Standards includes the following standard for a provider that is registered to provide enteral (naso‑gastric tube – jejunum or duodenum) feeding and management:

Each participant requiring enteral feeding and management receives appropriate nutrition, fluids and medication that are relevant and proportionate to their individual needs. [Sch. 2, cl. 4.]

The quality indicators for enteral feeding and management require the registered NDIS provider to demonstrate that:

  • Each participant is involved in the assessment and development of the plan for their enteral feeding and management. With their consent, the participant’s health status is subject to regular and timely review by an appropriately qualified health practitioner. The plan identifies how risks, incidents and emergencies will be managed, including required actions and escalation to ensure participant wellbeing.
  • Appropriate policies and procedures are in place, including a training plan for workers, that relate to the support provided to each participant who has enteral feeding needs.
  • All workers working with a participant who requires enteral feeding have completed training, relating specifically to each participant’s needs, type and method of enteral feeding and regime, and high intensity support skills descriptor for enteral feeding, delivered by an appropriately qualified health practitioner or person that meets the high intensity support skills descriptor for enteral feeding.

We have published a skill descriptor tool in relation to Module 1 of the Practice Standards. It sets out the skills and knowledge that NDIS providers should have access to when delivering high intensity daily personal activities, safely, to NDIS participants. Auditors and NDIS providers are to use the skill descriptors to determine whether the skills and capabilities used in the delivery of the related NDIS supports and services provide a safe environment for NDIS participants. It sets out detailed skills descriptors for enteral feeding and management. It also includes general advice to providers about the skills required to support people who require mealtime assistance and follow written meal preparation and delivery instructions.

Registered NDIS providers who are registered to provide community nursing care (class 14) or therapeutic supports (class 28) are required to comply with Module 6: Verification in the Practice Standards, which is in Schedule 8 to the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018.

The Verification Module of the Practice Standards requires that these registered NDIS providers identify and manage risks, including risks to participants, and have an incident management system that ensures incidents are acknowledged, responded to, well managed and learned from (sch.8, cll. 3 and 5). It also requires that each participant’s support needs are met by workers who are competent in relation to their role, hold relevant qualifications and have relevant expertise and experience to provide person-centred support (sch. 8, cl. 6).

NDIS providers who are not registered

NDIS providers who are not registered NDIS providers may provide supports relevant to an NDIS participant’s eating, swallowing, health assessments or medication management.

The NDIS Commission regulates NDIS providers and workers in all states except Western Australia, including NDIS providers who are not registered NDIS providers, through the NDIS Code of Conduct. The NDIS Code of Conduct is set out in the National Disability Insurance Scheme (Code of Conduct) Rules 2018.

The NDIS Code of Conduct requires that NDIS providers and all persons employed or otherwise engaged by an NDIS provider must:

  • provide supports and services in a safe and competent manner, with care and skill; and
  • promptly take steps to raise and act on concerns about matters that may impact the quality and safety of supports and services provided to people with disability.

2.2.3 Importance of choice and control and dignity of risk

It is fundamental to the NDIS and its role in giving effect to Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities that the NDIS enables people with disability to exercise choice and control in the planning and delivery of their supports.

The NDIS Commission will respect the importance of enabling NDIS participants to exercise choice and control, and each participant’s right to the dignity of risk in decision-making, in additional action we take in response to the recommendations to reduce respiratory related deaths by recognising the importance of obtaining consent to any health care, screening, assessments, plans or reviews.

The Core Module of the Practice Standards requires that each participant is enabled to exercise informed choice and control (sch. 1, cl. 3(2)).

The detailed indicators for this Practice Standard in the National Disability Insurance Scheme (Quality Indicators) Guidelines 2018 require demonstration of the following indicators:

  • Active decision-making and individual choice is supported for each participant including the timely provision of information using the language, mode of communication and terms that the participant is most likely to understand.
  • Each participant’s right to the dignity of risk in decision-making is supported. When needed, each participant is supported to make informed choices about the benefits and risks of the options under consideration.
  • Each participant’s autonomy is respected, including their right to intimacy and sexual expression.
  • Each participant has sufficient time to consider and review their options and seek advice if required, at any stage of support provision, including assessment, planning, provision, review and exit.
  • Each participant’s right to access an advocate (including an independent advocate) of their choosing is supported, as is their right to have the advocate present.

The importance of enabling participants to exercise informed choice and control is also recognised in other quality indicators that require the participant’s consent to certain activities, such as the regular review of the participant’s health status in relation to enteral feeding and management. A participant’s consent includes a nominee providing consent on a participant’s behalf (see s. 4A of the National Disability Insurance Scheme (Quality Indicators) Guidelines 2018).

The NDIS Code of Conduct requires that NDIS providers and all persons employed or otherwise engaged by an NDIS provider, in providing supports or services to people with disability, must act with respect for individual rights to freedom of expression, self-determination and decision-making in accordance with applicable laws and conventions.

2.3 NDIS Commission’s additional action on respiratory related deaths

We propose to take the following action to reduce the risk to NDIS participants of respiratory related deaths or injuries.

2.3.1 Provider Practice Alerts

We will develop and publish Provider Practice Alerts on:

  • dysphagia and mealtime management plans including transition to hospital;
  • antipsychotic medications that impact on swallowing and alertness during mealtimes;
  • polypharmacy and the need for regular medical reviews;
  • the need for regular comprehensive health care plans, including oral health screening, oral hygiene and access to dental health care;
  • transitional support planning for hospital discharge; and
  • vaccination for the flu season.

We will direct these Provider Practice Alerts to registered NDIS providers that are registered to provide classes of supports relevant to an NDIS participant’s eating, swallowing, health assessments or medication management, as discussed in section 2.2.2 above.

We will link the Provider Practice Alerts to the relevant NDIS Practice standards and quality indicators and to the NDIS Code of Conduct.

We will ensure that the Provider Practice Alerts respect the importance of enabling NDIS participants to exercise choice and control, and each participant’s right to the dignity of risk in decision-making, by recognising the importance of obtaining consent to any health care, assessments, plans or reviews.

We will work with the NDIA to promote these Provider Practice Alerts to unregistered NDIS providers that provide supports relevant to an NDIS participant’s eating, swallowing, health assessments or medication management.

We discuss developing a Provider Practice Alert in relation to epilepsy management in section 4.3 below.

2.3.2 Targeted projects and training

We will develop targeted projects to:

  • build the capacity of direct support workers in mealtime management and understanding of dysphagia; and
  • build the capacity of providers in supporting people with communication impairment.

These projects will be designed to develop tools and resources to support providers to meet their responsibilities to provide safe and quality services to NDIS participants.

As part of our focus on incident management and prevention, we are seeking to educate NDIS providers on the benefits of proactively reviewing and learning from incidents in order to drive continuous improvements to their services and to develop a culture of prevention. Over the next six months, we will develop materials to help NDIS providers to design and conduct practice reviews of incidents – including ‘near misses’ – so that they can:

  • prevent further incidents occurring;
  • better equip workers to manage incidents when they do occur; and
  • influence improvements across other service delivery functions.

We will also develop an additional e-learning module targeted at workers who are involved in mealtime management to improve their understanding of dysphagia and risks in relation to respiratory conditions and aspiration. As with the current modules in our worker orientation module ‘Quality, Safety and You’, this training would be available to anyone who wished to undertake it.

2.3.3 Practice Guide on Reducing Chemical Restraints

We will develop a guideline, in consultation with senior clinical practitioners, to provide best practice advice and quality indicators designed to reduce the use of chemical restraints and to promote the human rights and dignity of people with disability. It will:

  • inform registered NDIS providers and behaviour support practitioners about the use of chemical restraints;
  • assist in identifying chemical restraint practices; and
  • assist in identifying an appropriate support response when chemical restraints are used.

2.3.4 Ensuring action and compliance

We will reinforce the importance of preventative action through our registration function by briefing our approved quality auditors on the issues and actions we identify in the Provider Practice Alerts listed in section 2.3.1 above so that they can focus on these issues and registered NDIS providers’ incident management responses in conducting audits.

We will also reinforce the importance of prevention by developing an additional requirement to be included in the NDIS Practice Standards, supported by appropriate quality indicators, to explicitly address quality and safety in mealtime supports. Although a number of the existing practice standards discussed in section 2.2.2 above are relevant to the quality and safety of mealtime supports, the research provides an evidence base for us develop an explicit practice standard to address this issue.

We will take a number of steps to ensure that actions on the issues identified in the recommendations is supported by our compliance and enforcement work.

  • We will develop a process to inform the registered NDIS provider’s approved quality auditor before they conduct a mid-term audit that there are particular practice standards we want them to look at in the audit, in circumstances where the registered NDIS provider has had recent reportable incidents involving deaths, or where there may be particular issues in relation to their implementation of health care actions or other issues that may increase the risk to participants of serious injury or death.
  • We will prioritise for possible investigation and compliance action any NDIS providers where there are reports of preventable deaths, frequent hospitalisations or persistent health-related concerns.
  • We will further develop our compliance activity to consider requiring NDIS providers to undertake practice reviews of or arising from incidents involving death or serious injury or ‘near misses’, where appropriate. This will require NDIS providers to focus on continuous improvements to their services and developing a culture of prevention.

3. Reducing deaths related to choking

3.1 The recommendations

Page 8 of the Summary of Recommendations lists eight practice improvement recommendations to reduce rates of choking among people with disability drawn from the recent reviews of deaths of people with disability conducted in New South Wales, Victoria and Queensland.

  1. Disability and health care staff as well as family members should be provided additional education and training with the view of promoting awareness of:
    • How to identify potential eating, drinking and swallowing problems and the importance of seeking prompt specialist assessment if noted.
    • How to prepare food and beverages to the correct consistency.
    • Safe positioning, prompting and pacing during meals.
    • The importance of following mealtime plans precisely, including the need for constant supervision where indicated. Staff should be made aware that only very minor gaps in supervision are needed for choking to occur.
    • How to respond if a choking occurs. This includes first aid training with annual refresher courses.
  2. The importance of staff education as a protective factor for choking has been highlighted in research findings. For example, improved carer knowledge of choking risk and vulnerabilities has been shown to improve the extent to which carers adhere to mealtime guidelines.
  3. All people with disability should be screened for choking risks.
  4. People with identified choking risks should be assessed by a qualified health professional and an appropriate mealtime plan should be implemented accordingly.
  5. Health professionals who develop mealtime management plans should work with service organisations to ensure that they understand the resource and rostering requirements needed to implement the plans.
  6. People with disabilities subject to mealtime management plans should be provided with accessible information about their plan to increase compliance.
  7. Channels of communication between the person’s family, disability provider, health care team and other support staff, should be improved to ensure that mealtime management plans are known and followed consistently across settings.

Staff and services should be made aware that measures such as locking cupboards, fridges and freezers are not always failsafe, and do not replace effective supervision.

3.2 Current regulatory approach

The same issues and regulatory approaches discussed in section 2.2 above in relation to reducing respiratory related deaths apply to reducing deaths related to choking.

As with reducing respiratory related deaths, the NDIS Commission will target additional action we take in response to the recommendations to reduce deaths and serious injuries related to choking:

  • so that we focus on improving the quality and safety of supports provided to the NDIS participants who are at increased risk of death related to choking; and
  • to those NDIS providers and workers who are most likely to be providing mealtime supports.

The registered NDIS providers most likely to provide supports and services relevant to reducing choking risks are those providers registered in most, but not all, of the registration groups identified in section 2.2.2. We will consider whether to add registered NDIS providers who are registered to provide supports for household tasks (class 20), as this class includes meal preparation and delivery.

The NDIS Commission will respect the importance of enabling NDIS participants to exercise choice and control in additional action we take in response to the recommendations to reduce deaths related to choking by recognising the importance of obtaining consent to any health care, screening, assessments, plans or reviews.

Recommendation 8 in the list above refers to measures such as locking cupboards, fridges and freezes. When measures such as these have the effect of restricting a participant’s free access to all parts of their environment, including items or activities, they constitute environmental restraints and are regulated restrictive practices under the National Disability Insurance Scheme (Restrictive Practices and Behaviour Support) Rules 2018.

Restrictive practices can present serious human rights infringements. The NDIS Commissioner’s behaviour support function includes providing leadership in the reduction and elimination of the use or restrictive practices by NDIS providers.

Registered NDIS providers who use restrictive practices in the course of delivering NDIS supports must comply with the relevant conditions of their registration, including that they:

  • do not use restrictive practices where the relevant state or territory prohibits such use;
  • use restrictive practices only in accordance with state and territory authorisation processes and a behaviour support plan; and
  • record their use of restrictive practices and report this use to the NDIS Commission.

We will continue to develop policy and guidance materials in relation to behaviour supports and the reduction and elimination of the use of restrictive practices.

3.3 NDIS Commission’s additional action on deaths related to choking

Many of the additional actions outlined in section 2.3 above in relation to reducing respiratory related deaths also apply to reducing deaths related to choking. In particular:

  • The Provider Alerts we will develop and publish on:
    • dysphagia and mealtime management plans including transition to hospital;
    • antipsychotic medications that impact on swallowing and alertness during mealtimes;
    • polypharmacy and the need for regular medical reviews;
    • the need for regular comprehensive health care plans, including oral health screening, oral hygiene and access to dental health care; and
    • transitional support planning for hospital discharge,

will be relevant to choking, as well as to respiratory related deaths and serious injuries.

  • The targeted projects we will develop to build the capacity of direct support workers in mealtime management and understanding of dysphagia will be relevant to choking, as well as to respiratory related deaths and serious injuries.
  • The additional e-learning module we will develop targeted at workers who are involved in mealtime management will address risks in relation to choking as well as respiratory conditions and aspiration.

4. Improving epilepsy management

4.1 The recommendations

Page 9 of the Summary of Recommendations lists six recommendations for managing epilepsy among people with disability and potentially recuing avoidable epilepsy related deaths made in the recent review of deaths of people with disability conducted in Queensland. Professor Trollor and Dr Salomon added an additional recommendation drawn from that research in relation to educating staff and others and using particular equipment.

  1. Adults with a suspected seizure should be seen by a specialist in the diagnosis and management of epilepsy within two weeks.
  2. All adults diagnosed with epilepsy should have an agreed and comprehensive written care plan.
  3. Adults with a history of prolonged or repeated seizures should have an agreed written emergency care plan that provides guidance for support staff, carers or family members on how to administer emergency treatment.
  4. All adults with epilepsy should have an accessible point of contact with specialist services.
  5. All adults with epilepsy should have at least yearly reviews (or more regularly depending on how well their epilepsy is controlled).
  6. If seizures are not controlled in adults with epilepsy, or if there is treatment failure or side effects from their medication, they should be referred within 4 weeks to tertiary services for further assessment.
  7. Their work also highlights the importance of educating disability and health care staff as well as the person’s family about appropriate seizure recognition and monitoring. Staff should additionally receive training regarding appropriate administration of anti-seizure medication, and emergency response pathways and care for people who are having a seizure. Staff should be made aware that, in general, anti-epileptic medication should be continued even when the person is admitted to hospital. They also recommend that care providers use seizure detection smart watches and pressure mattresses overnight for at risk residents to reduce the risk of sudden death from epilepsy.

4.2 Current regulatory approach

Similar issues and regulatory approaches discussed in section 2.2 above in relation to reducing respiratory related deaths apply to improving epilepsy management.

The death reviews included in the scoping review primarily reviewed deaths of people with disability who were living in supported disability accommodation or receiving services from specialist disability services. All of the people whose deaths were reviewed who had epilepsy, therefore, were people accessing particular disability supports and services.

However, many people with epilepsy would not consider themselves to have disability. Many people with epilepsy will gain control of their seizures by taking anti-epileptic drugs, and for some people, living with epilepsy will not have a big impact on their life. (Epilepsy Foundation, What is Epilepsy?, http://epilepsyfoundation.org.au/understanding-epilepsy/about-epilepsy/what-is-epilepsy/ - accessed 24 January 2020).

As with reducing respiratory related deaths and deaths related to choking, the NDIS Commission will target additional action we take in response to the recommendations to improve epilepsy management:

  • so that we focus on improving the quality and safety of supports provided to NDIS participants who have epilepsy and who have not gained control of their seizures by taking anti-epileptic drugs; and
  • to those NDIS providers and workers who are most likely to be providing supports or services relevant to an NDIS participant’s epilepsy management.

The registered NDIS providers most likely to provide supports and services relevant to enabling NDIS participants to improve their epilepsy management are those providers registered in most, but not all, of the registration groups identified in section 2.2.2.

The skill descriptor tool we have published in relation to Module 1 of the Practice Standards, which we outlined in section 2.2.2, also includes general advice to providers about the skills required to work with people who have seizures or require emergency post-seizure medication (PRN), and the skills required for workers who administer epilepsy medication.

The NDIS Commission will respect the importance of enabling NDIS participants to exercise choice and control in additional action we take in response to the recommendations to improve epilepsy management by recognising the importance of obtaining consent to any health care, screening, assessments, plans or reviews.

4.3 NDIS Commission’s additional action on epilepsy management

We will work with relevant bodies to develop a Provider Practice Alert addressing how NDIS providers should enable NDIS participants with epilepsy to improve the management of their epilepsy.

We will direct this Provider Practice Alert to registered NDIS providers that are registered to provide classes of supports most likely to be relevant to an NDIS participant’s epilepsy management.

We will link the Provider Practice Alerts to the relevant NDIS Practice standards and quality indicators.

We will ensure that the Provider Practice Alerts respect the importance of enabling NDIS participants to exercise choice and control by recognising the importance of obtaining consent to any health care, assessments, plans or reviews.

We will also work with the NDIA to make this Provider Practice Alert available to unregistered NDIS providers that provide supports relevant to an NDIS participant’s epilepsy management.

5. Reducing lifestyle risks

5.1 The recommendations

Page 10 of the Summary of Recommendations lists six strategies for reducing lifestyle risks among people with disability drawn from the recent reviews of deaths of people with disability conducted in New South Wales, Victoria and Queensland.

  1. People with disabilities should be provided with information about healthy lifestyles (including information about healthy eating, weight management, physical activity, and drug, alcohol and smoking reduction) in formats that are accessible to them.
  2. Health care and disability staff, along with family members, should be provided with topical training so they can more effectively support clients to meet healthy lifestyle goals.
  3. Disability services should ensure that metrics related to lifestyle risk (i.e. levels of physical activity, diet, BMI, smoking, drinking and other drug use, blood pressure, and blood glucose levels) are regularly monitored. Any abnormal results should trigger referral to specialists.
  4. Prescriptions of psychotropic medications should be carefully rationalised and monitored. Specialist medication review should be sought where appropriate.
  5. Specifically in relation to cardiovascular risk in people with congenital heart disease, the Queensland Office of the Public Advocate notes: “Even those people whose heart defects were corrected as children should have access to specialist cardiologist treatment. Regular medication reviews are also essential, particularly when being administered psychotropic medications given that this can also be a risk factor for cardiovascular disease.”
  6. The NSW Ombudsman notes that people should have access to healthy support both within and outside of their care environments. This includes service organisations developing internal programs focused on exercise and healthy eating and so forth, as well as linkage to mainstream supports. The Get Healthy Information and Coaching Service is one such mainstream service available in NSW (see http://www.gethealthynsw.com.au), although additional work is needed to ensure such population level health strategies are made accessible to people with disability.

5.2 Current regulatory approach

Similar issues and regulatory approaches discussed in section 2.2 above in relation to reducing respiratory related deaths apply to reducing lifestyle risks.

The death reviews included in the scoping review primarily reviewed deaths of people with disability who were living in supported disability accommodation or receiving services from specialist disability services. All of the people whose deaths were reviewed, therefore, were people accessing disability supports and services in an environment where lifestyle risks might be subject to considerable influence by the relevant disability service providers.

However, many NDIS participants are not accessing disability supports and services in an environment where any lifestyle risks they have should be subject to particular influence by the relevant NDIS provider.

Similarly, registered NDIS providers of a number of classes of support would not be expected to be involved in providing in supports or services relevant to an NDIS participant’s lifestyle risks.

The NDIS Commission will target additional action we take in response to the recommendations to reduce lifestyle risks:

  • so that we focus on improving the quality and safety of supports and services provided to NDIS participants who are accessing supports and services in an environment where lifestyle risks might be subject to particular influence by the relevant NDIS provider; and
  • to those NDIS providers and workers who are most likely to be providing supports or services in an environment where they may exercise considerable influence in relation to NDIS participants’ lifestyle risks.

The registered NDIS providers most likely to provide supports and services relevant to enabling NDIS participants to reduce their lifestyle risks are those providers registered in most, but not all, of the registration groups identified in section 2.2.2, with the addition of those providers registered to provide supports for exercise physiology and personal wellbeing training (class 26).

Choice and control and the dignity of risk are likely to be particularly important in relation to healthy lifestyle choices for many people with disability.

The NDIS Commission will respect the importance of enabling NDIS participants to exercise choice and control, and each participant’s right to the dignity of risk in decision-making, in additional action we take in response to the recommendations to reducing lifestyle risks by recognising the importance of consent and offering choices.

5.3 NDIS Commission’s additional action on reducing lifestyle risks

We propose to take the following action in relation to enabling NDIS participants to reduce their lifestyle risks, if any, if they choose to do so.

We will develop and publish Provider Practice Alerts on:

  • lifestyle risks and the importance of ensuring NDIS participants have access to information about lifestyle risks and are offered healthier choices; and
  • the need for regular comprehensive health care plans, including oral health screening, oral hygiene and access to dental health care.

We will direct these Provider Practice Alerts to registered NDIS providers that are registered to provide classes of supports where they are most likely to be providing supports or services in an environment where they may exercise particular influence in relation to NDIS participants’ lifestyle risks.

We will link the Provider Practice Alerts to the relevant NDIS Practice standards and quality indicators.

We will ensure that the Provider Practice Alerts respect the importance of enabling NDIS participants to exercise choice and control, and each participant’s right to the dignity of risk in decision-making, by recognising the importance of obtaining consent and offering choices.

We will work with the NDIA to make these Provider Practice Alerts available to unregistered NDIS providers that provide supports or services particularly relevant to an NDIS participant’s lifestyle risks and healthy lifestyle choices.

6. Methodology for death reviews

6.1 The recommendations

On pages 2 to 6 of the Summary of Recommendations, Professor Trollor and Dr Salomon make a number of recommendations about:

  • methodological issues for investigating deaths;
  • collecting data about the core characteristics of those who die and the methods used to analyse the data; and
  • how best to analyse the cause of death.

We have not reproduced the recommendations here, but they can be read in full in the Summary of Recommendations.

These recommendations are directed to how Professor Trollor and Dr Salomon consider a broad national disability death review function – including, but not limited to people with disability in the NDIS – should be performed.

6.2 The NDIS Commission’s functions

The NDIS Commissioner’s core functions under the NDIS Act include:

  • to uphold the rights of, and promote the health, safety and wellbeing of, people with disability receiving supports or services, including those received under the NDIS (s. 181E(a));
  • to promote the provision of advice, information, education and training to NDIS providers and people with disability (s. 181E(c));
  • to secure compliance with the NDIS Act through effective compliance and enforcement arrangements, including through the monitoring and investigation functions conferred on the NDIS Commissioner (s. 181E(d)); and
  • to promote continuous improvement amongst NDIS providers and the delivery of progressively higher standards of supports and services to people with disability (s. 181E(e)).

Taking action to reduce risks to the lives of people with disability is a very important priority for the NDIS Commission. This is why we engaged Professor Trollor and his team to undertake the scoping review, and why we will be taking the actions described above to address the identified risks. It is also why we are looking to take every opportunity to promote the scoping review to other agencies and bodies, because we recognise that reducing these risks to the lives of people with disability extends beyond the NDIS and NDIS supports and services.

The NDIS Commission also has a broader responsibility to uphold the rights of, and promote the health and wellbeing of people with disability in the NDIS. This involves improving the quality of supports and services, and supporting providers to better manage, and indeed avoid incidents that result in the violation of a person with disability’s rights, or which compromise their safety or wellbeing.

To enable us to identify the potentially serious incidents that affect people with disability, our reportable incidents function requires registered NDIS providers to notify us of certain incidents. However taking action in relation to deaths is only one of the areas in which we will need to take action to uphold the rights of, and promote the health, safety and wellbeing of, people with disability receiving supports or services, including NDIS participants.

The death of a person with disability is one of six types of reportable incidents. Under s. 73Z(4) of the NDIS Act, a reportable incident is defined to mean:

  • the death of a person with disability;
  • serious injury of a person with disability;
  • abuse or neglect of a person with disability;
  • unlawful sexual or physical contact with, or assault of, a person with disability;
  • sexual misconduct committed against, or in the presence of, a person with disability, including grooming of the person for sexual activity; or
  • the use of a restrictive practice in relation to a person with disability, other than where the use is in accordance with an authorisation (however described) of a State or Territory in relation to the person. (Section 16 of the National Disability Insurance Scheme (Incident Management and Reportable Incidents) Rules 2018 excludes some acts from the definition of reportable incidents, and extends the definition to other acts.In particular, under s. 16(3), the use of a restrictive practice in relation to a person with disability where the use is in accordance with an authorisation of a State or Territory is a reportable incident if the use is not in accordance with a behaviour support plan for the person with disability.

Registered NDIS providers are obliged to notify the NDIS Commission of reportable incidents where the relevant reportable incident occurs, or is alleged to have occurred, in connection with the provision of supports or services by the registered NDIS provider.

We decided to take an early focus on deaths by commissioning the scoping review because we knew that existing death reviews had already identified a number of risks to the lives of people with disability but had not necessarily resulted in action being taken to reduce those risks. We wanted to establish a strong evidence base to enable us, as a new regulator with a new set of functions and power, and consequently limited data in early stages of operation, to take action to reduce those identified risks of death or serious injury.

Using the extensive work already done by state bodies would enable us to access intelligence to inform our work to inform and educate providers about known risks to the lives of people with disability. We identified that the important difference we could make was not in waiting to receive reports of deaths and then building our own evidence base by reviewing them. Rather, the important difference we intend to make is by using our regulatory powers to ensure that the existing research and knowledge is acted on so that real improvements occur for people with disability.

We are just as concerned to take action to reduce risks of serious injuries, abuse and neglect to people with disability, and we are working with the data we have and developing our data analysis to help us identify how best to reduce these risks on a systemic basis.

The NDIS Commissioner has a range of powers we can use to perform the NDIS Commissioner’s functions. These powers are discretionary, and the NDIS Commissioner can choose whether to use particular powers in appropriate circumstances.

The NDIS Commission does not have a death review function that obliges the NDIS Commissioner to review and report on all notified deaths in the way that, for example, the NSW Ombudsman has produced biennial reports on the deaths of people with disability in residential care to the NSW Parliament.

The NDIS Commissioner’s functions and powers enable the NDIS Commission to investigate individual deaths, or a series of deaths, but choosing to exercise these powers in some or all cases is at the discretion of the NDIS Commissioner.

How we direct our focus and efforts across the areas we need to address will change over time, and should be focussed on areas where we can deploy Commission powers in a manner that will achieve real improvements in the upholding of the rights of people with disability and the health, safety and wellbeing of people with disability.

The establishment of the NDIS Commission and our transition to national jurisdiction from 1 December 2020 presents real opportunities for improvements in reviewing serious incidents and taking action to reduce known risks to the lives of people with disability through:

  • requiring the reporting of deaths and other serious incidents in connection with the provision of supports or services by registered NDIS providers on a nationally consistent basis;
  • connecting the reporting of deaths and other serious incidents to strong regulatory powers, including compliance and enforcement powers, and developmental and preventative actions;
  • enabling reports of deaths to be considered alongside reports of other serious incidents and incidents generally, allowing patterns of serious incidents and ‘near misses’ to be identified and acted on; and
  • requiring the collection, analysis and dissemination of information relating to incidents, including reportable incidents, to identify trends or systemic issues, on an ongoing and nationally consistent basis.

The NDIS Commissioner will report each year on the issues and trends we observe in reportable incidents. We will also report on the experience of people with disability in the NDIS as a result of our other functions, mainly complaints and behaviour support.

In addition, at some time in the future, the NDIS Commissioner might decide to undertake a comprehensive national inquiry into deaths, which, within the limits of the NDIS Commissioner’s functions and powers, could be comparable to the state reviews included in the scoping review. This would depend on the risks and issues that we observe facing the safety, rights and wellbeing of people with disability. It would also likely depend on the NDIS Commissioner’s assessment of relative priorities and risks across the NDIS Commissioner’s functions at that time. It might also depend on the NDIS Commissioner’s assessment of the available evidence and whether there were significant gaps in knowledge that a review conducted by the NDIS Commissioner would be best placed to fill.

6.3 Promoting the scoping review to other agencies and bodies

We are promoting the scoping review to other relevant government agencies and non-government bodies, and we will continue to do this on various matters over time.

We will also approach other regulatory bodies and sector representatives to work with them to develop appropriate guidance, procedures and tools to assist in preventing avoidable deaths and reducing the risk of serious injury to people with disability.

The issues identified in the research extend beyond the NDIS and the disability sector.

The practice improvement recommendations taken from the New South Wales, Victorian and Queensland death review reports to reduce respiratory related deaths and deaths related to choking, improve epilepsy management and reduce lifestyle risks are likely to be relevant to a number of mainstream services, either generally or in relation to particular recommendations. We are taking steps to promote the scoping review to agencies and bodies with relevant responsibility for the mainstream services for which the scoping review is most likely to be relevant.

The recommendations in relation to methodological issues for investigating deaths, collecting data about the core characteristics of those who die and the methods used to analyse the data and how best to analyse the cause of death are likely to be relevant to a number of agencies and bodies that have roles in relation to reviewing and reporting on deaths or related data. We are taking steps to promote the scoping review to these agencies and bodies.

6.4 NDIS Commission’s additional action on methodological and related recommendations

Although we do not intend to undertake comprehensive national reviews of deaths at this time, we will continue to consider the methodological and related recommendations in the scoping review as we develop our data holdings.

We are finalising our data analytics and reporting framework across the NDIS Commission to help us mature our data collection systems and make best use of data for our quality and safeguarding activities, including our regulatory action. The scoping review, together with the AIHW research, will enable us to establish a national baseline against which we can review the data we collect on the deaths of NDIS participants. We will draw on the research to inform our data and reporting activities, and make necessary enhancements to our reporting system to better inform our regulatory action.

As our data holdings mature, we will also work towards collecting, analysing and reporting the data in a manner that is also useful for other agencies and researchers to the extent that this is appropriate, given our functions and our obligations to protect information, including for reasons of privacy.

We note the methodological recommendation in relation to addressing the under-reporting of deaths of people with disability (recommendation 1.4 on page 2 of the Summary of Recommendations). We continue to educate NDIS providers and workers in relation to their incident management and reportable incident obligations and obligations under the NDIS Code of Conduct. Registered NDIS providers’ compliance with their conditions of registration in relation to incident management and reportable incident obligations is subject to audit. We also use information from complaints and other information from third parties to identify where a registered NDIS provider has not notified us of a reportable incident that they should have notified us of, and we pursue this with the provider.

We also note the recommendation relating to understanding the core characteristics of people who died (recommendation 2.1 on page 4 of the Summary of Recommendations). In addition to considering the information we collect through reportable incident notifications, we are also working with the NDIA to obtain other relevant information under our data-sharing arrangements.