We have worked hard to ensure my 31 year old son Jacob is living a good life, living in his own home, included in his community.  However, the NDIS review recommendations threaten to undermine all of this. 

While the NDIS review panel has done a good job identifying the problems, their solutions risk throwing out all the good things that are happening with the bad. And this has me deeply concerned.  

Since Jacob was very young, we have had this idea that he is entitled to a good life as every other person. Though we realised early that the good things in life don’t automatically happen when you have a disability and to achieve this, some conscious thought and action would be required. 

We called it our “vision” and really it was just our family writing our thoughts down about how Jacob could have a typical life, included in our neighbourhood and community. All the good things that come with being known, acceptance and belonging.  Our vision – now its Jacob’s vision – has been immensely useful. It gives us direction and, importantly, shows us what to avoid.  

So Jacob has had a mainstream education, attended TAFE and Uni, is a Toastmaster, has a fledgling microenterprise and lives in his own home which he shares with a housemate who provides some practical support.  Jacob lives his life as an individual, where he is included in our communities and safeguarded by the many freely given relationships he has. We have much to thank the NDIS for the support Jacob needs to achieve these good things. 

With the NDIS we have chosen to self manage and directly employ support workers to work with Jacob.  We found recruiting workers without disability experience or qualifications allowed us to train them in the unique ways of supporting Jacob. It also meant we could recruit based on the values, attitudes and attributes required to work with Jacob. We sought support workers with a strong social justice orientation and support for human rights, equality and inclusion. Sadly, we found these attributes lacking in many qualified and experienced disability support workers. 

Other benefits of direct employment are:

• The cost of support is below the NDIS price limit meaning we – and the NDIA –  get more ‘bang for buck’ 
• Being able to offer good pay and flexible working conditions
• A loyal and stable support team with very low staff turnover 
• Direct communication with team members and faster response to any problems that arise.
• We have direct influence on team culture and practice, which is focussed on giving Jacob the best support to live a good life.
• While some of Jacob’s support team members have other jobs, none work with other NDIS participants. This has been exceptionally important in reducing the risk of COVID transmission.

Due to the complexity of self management and direct employment, Jacob is not actively involved in the administration processes. He is however, actively involved in the recruitment and training of support workers, how he is supported and how he lives his life.

Importantly we have been proactive in developing safeguards for Jacob and I believe he is safer with our self managed, direct employment arrangement than he would be using registered providers. 

When we think about safety we know people keep people safe. 

Jacob is well known in the neighbourhood and community. He has  a circle of support, friends and family, who regularly drop by and he is supported to keep in contact with people in his networks. With support Jacob regularly hosts gathering and catch ups and is supported to build new relationships.  He is also supported to make his own decisions about his life and direction.

Service providers do not offer this type of support, nor the sharing of power and authority that is required to achieve these good outcomes.

So with these good things going on, it is with dismay that I read some of the recommendations from the NDIS review. 

I must remind myself that these are recommendations only. They are not set in stone and there is time to influence changes. 

My specific concerns are: 

•  Recommendation 8.1. says people requiring 24/7 living supports will be funded based on a shared support ratio of 1:3. This takes us back decades and reinforces the congregation and segregation of people with disability. This recommendation undermines the innovation and individualisation of support that has been growing in momentum in recent years. 
• Recommendation 17. will stop people with disability from being able to use unregistered or directly employed workers. It will also prevent the clever uses of mainstream businesses to meet disability support needs. This is an incredible overreach effectively removing choice and control and the self direction of support.

Together these proposed recommendations feel like a double whammy!

Budgets based on 1:3 funding and no more direct employment or using non registered providers – I am struggling to see how we can keep up Jacob’s good life if these recommendations come to fruition. 

We are not alone. 

Most people with disability and families have voted with our feet and are choosing non-registered providers.  Why have we chosen non-registered providers?  Because the many registered providers have been unwilling or unable to meet our needs or share power with the people they support.

Safeguards are vital. But the safeguarding of people with disability using registered or non-registered providers is the neglected work of the NDIS commission and the NDIA. There has been no investment in people with disability and their families to build their capacity to recognise good quality and safe supports. 

All the regulation in the world will not create the safety that comes when people know their rights and are included in their communities and neighbourhoods. 

Michael Kendrick says “People keep people safe.” “When people are well known by their neighbours and communities, it is people’s individual relationships that keep someone safe. It is not service systems, not financial institutions, not doctors or nurses … they are important, but it is people who love us, who know us well, who advocate for us, who keep us safe into the future.” 

The Disability Royal Commission and the NDIS Commission recently highlighted the high risk of abuse, neglect and exploitation in congregate and shared supported accommodation, but this is precisely the recommendation of the NDIS review. The 1:3 ratio of support might be better then 1:6   but it stifles and undermines better individualised living opportunities. 

I would love an opportunity to share the myriad ways people with disability are living in their own homes in individualised living arrangements. Most people with disability and their families make it work through the flexibility of being able to use non-registered providers. 

We need to be able to keep the good things that are happening. The truly innovative, individualised and inclusive arrangements, where people like my son are thriving. And we need more of this for more people.  

Quite frankly, I would have liked to have heard a bigger, brighter vision from the NDIS review panel, than the one we got.

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