Being disabled you are in the hands of others and if those hands aren’t kind what an awful world it must be – Henrietta Spink

Ann Marie Smith’s death was a shocking case of abuse and neglect and, as the independent investigations have confirmed, also a failure of the system. The review of the adequacy of the regulation of the supports and services provided to Ms Smith conducted by the Hon Alan Robertson provides a list of ten recommendations of how the NDIS Commission‘s processes and systems should be changed. The advice for the two-way information flow between the NDIS Commission and the NDIS reveals major gaps in the system.

Yet, Ms Smith died at the hands of one single support worker who exploited and neglected her – and her service provider who failed to provide effective oversight, quality assurance and risk management. Appropriate worker screening, better staff scheduling processes, regular supervision and client engagement could have saved Ms Smith’s life.

The shock over Ms Smith’s suffering has sparked sector wide reviews and organisational health checks. ‘Could this have happened in our service provision? Are our policies, procedures and training appropriate to prevent such abuse?’

Measures to prevent abuse and neglect

Identifying and regularly contacting clients who receive supports from a single support worker is one risk management approach that some providers have now introduced. Staff rotation to alternate support staff has been increased by some services. Screening processes, induction programs and the role of supervisors have been reviewed and adjusted.

The NDIS Code of Conduct clearly expects providers to actively prevent abuse and neglect and to respond to incidents of violence, abuse, neglect and exploitation.

Under the NDIS quality standards registered NDIS providers and their boards need to pay more attention to their obligations and their quality management approach. Management reports to the board now include data and information on incidents and complaints, critical incidents, client retention and improvement initiatives, as measures for the quality of supports.

Effective quality management and a Zero Tolerance philosophy are critically important yet this cannot be enough to validate ‘quality of service’. Specifying what constitutes quality in service is a difficult task and should be defined by the value and benefit the customer expects and receives. The prevention of abuse and neglect should be considered the minimum standard to what else service providers could and should offer and achieve.

The importance of natural supports

According to a recent interview with Ms Smith’s brother and uncle, she was described as a very private person. Without community access and no regular contact to neighbours, friends or family members, she was isolated and kept to herself.

Meaningful relationships with others are one of the most fundamental and essential elements of our lives. People with high support needs have more difficulties in participating in community life and connecting with friends and neighbours. People who heavily rely on paid supports have been found to be at a heightened risk of social isolation.

During recent weeks reports have emerged of people with disability who were left without essential supports for days during COVID 19 as workers had to isolate or could not travel to provide the regular supports. People with a committed group of family and friends were kept safe whereas people who did not have somewhere else to turn for support were at major risk.

Supporting natural supports

When my friend’s chronic illness started to deteriorate she became dependent on support workers getting her out of bed and assisting with almost every daily task. She no longer would let me visit her without her support worker in the house. This support worker was the sole support worker over years and she would persistently attend and participate in every of our coffee chats and lunches for years. This impacted more on our friendship than my friend’s illness. When my friend’s yoga teacher refused to accept the companion card, my friend stopped attending her weekly class as her support worker could not participate as well.

My friend’s support worker was a highly dedicated and caring person yet she did not know when to step back. She replaced natural relationships and supports gradually, instead of facilitating and fostering them. When she resigned for health reasons last year she left a distressed, devastated and lonely customer behind.

Natural supports are the unpaid, informal and ordinary relationships we all have in our lives such as the yoga teacher, the faith community, the neighbours, someone at the library, friends and family.   Natural relationships contribute to building a good life for people with disabilities and safeguard people with disabilities into the future.

Natural supports can be people that are encountered incidentally at regular times in regular places. Natural relationships can be also be purposely invited and freely chosen by the person with disability. At times this may need initiation and facilitation by a paid support worker. Support workers need to take notice if the person in their care is isolated and assist in stimulating potential new connections. Support workers also play a critical role in helping people with disabilities to maintain and nurture existing relationships.

By creating a good life you are preventing abuse – Prof Sally Robinson

As your organisation questions how you are proactively preventing abuse and neglect you should strategically think how your staff and their supervisors are assisting and encouraging natural supports of the people they support. Human beings are social creatures who need relationships to survive and thrive. A network of natural supports is essential for keeping people safe and supported.

What role should your support worker play in maintaining and developing natural supports? What questions should they ask? What training do supervisors and staff members receive? What outcomes for your clients do you expect to see? And how can you evaluate if your staff are achieving these outcomes?

People with disabilities are at greater risk of abuse and neglect, and the recent media attention on horrific cases is highlighting the need for the Disability Royal Commission and investigations into preventable deaths.

Service providers must provide quality services where people with disabilities feel safe, valued and listened to, and must play a proactive role in activating human rights and building safer lives.