will NDIS reforms mean people with disability don’t get to decide who they live with?

Many Australians with disability feel on the edge of a precipice right now. Recommendations from the disability royal commission and the NDIS review were released late last year. Now a draft NDIS reform bill has been tabled. In this series^[1], experts examine what new proposals could mean for people with disability.

Australia is failing some of our most vulnerable citizens. This week, a news report^[2] showed the vile and cruel behaviour of three workers in a group home for people with disability.

Lee-Anne Mackey’s family, desperate for answers to her distress, used hidden camera footage to show she was being bullied and physically abused by those meant to care for her. One worker had been employed to support Mackey for 17 years.

Disability housing in Australia is poor quality, expensive, and becoming more costly each year. Sadly, findings from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability^[3] show Mackey’s experience^[4] is not isolated.

Some in the disability sector are worried that, despite some constructive recommendations, reform plans could deny people with disability the option to choose where they live and with whom.

Read more: Choice and control: are whitegoods disability supports? Here's what proposed NDIS reforms say^[5]

Too old and too costly

Suitable and safe housing is a basic human right^[6]. Most of the 40,867 National Disability Insurance Scheme (NDIS) participants who need access to 24/7 support are living in old housing stock^[7] that is not fit for purpose. This housing does not foster independence or enable the efficient delivery of support.

Redesigning services and building contemporary models of disability housing and innovation will not only improve the lives of people like Mackey, but also the sustainability of the scheme.

The cost of support – A$9.9 billion each year provided to the 5% of NDIS participants^[8] living in disability housing – represents a quarter of total scheme payments. This cost is increasing each year by 9% per person^[9].

Inconsistent funding decisions are also creating an unusual form of trauma^[10] for NDIS participants and families and unnecessary work for NDIS staff, therapists and lawyers^[11].

What could the future look like?

Many people living in group homes before the introduction of the NDIS are still “captive^[12]” to the same providers.

Proposed NDIS legislation^[13] references the United Nations Convention on the Rights of Persons with Disabilities^[14] for the first time. Hopefully this will translate to policy implementation that increases participant choice and control over housing and support.

Proposed legislation^[15] also aims to deliver fair, consistent and flexible funding so participants can make better use of NDIS resources^[16]. More flexible budgets and longer plan durations^[17] of up to five years will give participants more certainty, and the ability to adjust their support, save and rollover funds.

As seen in Western Australia before the NDIS^[18] and overseas^[19], more flexible personalised budgets can unlock more value and tailored housing and living arrangements^[20].

The NDIS review^[21] also includes some practical ways people with disability might realise the housing rights most people take for granted – such as choosing a home and housemates. Potential reforms include:

New co-designed resources^[22] will help people living in disability housing to provide feedback and make complaints.

Read more: Taken together, the NDIS review and the royal commission recommendations could transform disability housing^[23]

What about the risks?

The NDIS review^[24] states “living alone is not necessarily in line with community norms”. The review adds a 1:1 ratio of support worker to participants with 24/7 living supports can:

[…] foster dependency, increase risks of exploitation, reduce focus on capacity building and opportunities to increase social and economic participation.

Policymakers have wrongly assumed people with disability need to live together for there to be efficiencies in the system and their supports.

Some NDIS participants are not well suited to living with other people with disability. Forcing NDIS participants to share with others instead of allowing single-occupancy dwellings located together has the potential to drive up support costs and perpetuate violence and abuse.

Research^[25] indicates moving to co-located single occupant housing has a positive impact on wellbeing, community integration and independence. NDIS participants report^[26] more independence and autonomy.

To be in line with our human rights obligations, the next iteration of the NDIS should foster a range of living arrangements including living with a partner, children, friends with or without a disability, or alone.

One support worker to three participants

There are 40,867 NDIS participants who need access to 24/7 living supports. The NDIS review^[27] recommends they be funded on a 1:3 ratio – meaning on average, one support worker to three people needing support.

Some NDIS participants and their families are anxious^[28] this ratio will be used as a blunt instrument to reduce the cost of NDIS plans.

Some housing providers could interpret the 1:3 ratio as a signal to stop building single-occupancy dwellings. If they build only three-bedroom share houses, it will reduce choice.

It is clear the current regulatory system for disability housing is not working. However, regulation that is not carefully designed and proportionate has the potential to add another layer of cost and further restrict the lives of NDIS participants. Increased regulation tends to favour established business models and stifle innovation^[29]. This could extinguish the hope of achieving the radical change in quality and efficiency needed.

Better data^[30] on the housing and support needs and preferences of people who need access 24/7 support is needed to foster a user-driven market. And given the Australian government spends $1.29 billion each year^[31] providing 24/7 support to NDIS participants who need it, data about outcomes is warranted too.

Read more: Choice and control: the NDIS was designed to give participants choice, but mandatory registration could threaten this^[32]

Crisis and opportunity

The current business model in disability housing sees providers delivering as much in-person support as possible^[33] with no reward for supporting people to become more independent. Future NDIS policy needs to incentivise new user-led services that leverage technology and the built environment to improve the quality, efficiency and outcomes for NDIS participants^[34].

References

1. ^{^} this series (theconversation.com)
2. ^{^} a news report (9now.nine.com.au)
3. ^{^} Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (disability.royalcommission.gov.au)
4. ^{^} experience (9now.nine.com.au)
5. ^{^} Choice and control: are whitegoods disability supports? Here's what proposed NDIS reforms say (theconversation.com)
6. ^{^} basic human right (doi.org)
7. ^{^} living in old housing stock (www.ndisreview.gov.au)
8. ^{^} A$9.9 billion each year provided to the 5% of NDIS participants (www.ndis.gov.au)
9. ^{^} 9% per person (www.ndis.gov.au)
10. ^{^} unusual form of trauma (youtu.be)
11. ^{^} NDIS staff, therapists and lawyers (www.linkedin.com)
12. ^{^} captive (www.ndisreview.gov.au)
13. ^{^} NDIS legislation (parlinfo.aph.gov.au)
14. ^{^} United Nations Convention on the Rights of Persons with Disabilities (www.un.org)
15. ^{^} legislation (parlinfo.aph.gov.au)
16. ^{^} better use of NDIS resources (citizen-network.org)
17. ^{^} More flexible budgets and longer plan durations (parlinfo.aph.gov.au)
18. ^{^} Western Australia before the NDIS (doi.org)
19. ^{^} overseas (citizen-network.org)
20. ^{^} tailored housing and living arrangements (citizen-network.org)
21. ^{^} NDIS review (www.ndisreview.gov.au)
22. ^{^} New co-designed resources (www.summerfoundation.org.au)
23. ^{^} Taken together, the NDIS review and the royal commission recommendations could transform disability housing (theconversation.com)
24. ^{^} NDIS review (www.ndisreview.gov.au)
25. ^{^} Research (www.tandfonline.com)
26. ^{^} NDIS participants report (www.publish.csiro.au)
27. ^{^} NDIS review (www.ndisreview.gov.au)
28. ^{^} are anxious (everyaustraliancounts.com.au)
29. ^{^} favour established business models and stifle innovation (atlantic-books.co.uk)
30. ^{^} data (www.ndisreview.gov.au)
31. ^{^} $1.29 billion each year (www.ndis.gov.au)
32. ^{^} Choice and control: the NDIS was designed to give participants choice, but mandatory registration could threaten this (theconversation.com)
33. ^{^} as much in-person support as possible (www.ndisreview.gov.au)
34. ^{^} quality, efficiency and outcomes for NDIS participants (www.ndisreview.gov.au)