NDIS word change: How it will halve participant support plans

New NDIS Safeguards Exclude High-Needs Participants Relying on Family Care

A recent government concession meant to safeguard funding for the National Disability Insurance Scheme’s (NDIS) most vulnerable participants may leave out many who depend on unpaid family support. Advocates warn this oversight could push families providing round-the-clock care to their breaking point.

Major NDIS Funding Cuts Take Effect

Starting October 1, the government began implementing significant changes to NDIS funding. These adjustments are set to reduce social and community participation budgets by 50 per cent and therapy budgets by 10 per cent over the next year.

These changes are the first application of a new “support determination” power. This power, introduced through the NDIS Amendment (Securing the NDIS for Future Generations) Act passed in August, aims to cut $38 billion from the NDIS budget over four years.

A Critical Gap in the “Safeguard”

During the final stages of the legislation’s passage, a “safeguard” was added for people with high support needs. Initially, this referred to participants who “require” 24 hours of care daily. However, this definition was later narrowed to those “funded” for 24 hours of support.

This subtle but crucial distinction creates a significant gap, excluding most participants whose daily support is largely provided by family members without payment. The eligibility criteria also require participants to have a combined annual budget of $215,030 for at-home and in-community supports. Many who receive extensive unpaid care from family may not meet this monetary threshold.

Families Facing Increased Pressure

Maeve Kennedy, CEO of Inclusion Australia, the peak body for intellectual disability, highlighted the issue. “The problem with the definition as it stands is that it measures how a person’s support is funded, rather than the reality of their support needs,” Kennedy explained. “That creates a significant gap in the safeguard.”

Inclusion Australia is already hearing from families who anticipate needing to reduce their paid work hours. This means less income for households already struggling with the rising cost of living.

Minister Responds to Funding Changes

NDIS Minister Jenny McAllister addressed questions regarding the benchmark amount. She stated that the $215,030 threshold combines funding across daily life assistance, home and living supports, and social, economic, and community participation.

According to Minister McAllister, this amount measures a participant’s ongoing support needs and is equivalent to receiving 24-hour support at a shared ratio of one staff member to three participants.

The Minister also noted that the average NDIS plan spend on social and community participation has risen from approximately $14,000 five years ago to $31,000 currently. She indicated that the new changes aim to bring this average back to $26,000 – the level seen in 2023 – over the next two years.

Personal Stories Highlight Devastating Impact

Fiona Lawton, Disability Advocacy Manager at Rare Voices Australia, expressed deep concern about how these funding cuts will affect individuals with rare and complex conditions, including her 22-year-old son, Connor. Connor lives with Angelman syndrome and requires 24/7 care.

Connor’s community participation funding currently allows him to attend appointments, develop vocational skills for a microbusiness, and join an all-abilities theatre group – activities that are vital to his wellbeing. “I will just watch him plunge into a mental health crisis,” Lawton said, fearing an increase in self-injurious behaviour and attempts to leave the house in distress.

Lawton anticipates a cut of three days a week from Connor’s funding. For her as a caregiver, she explained, this will directly impact her ability to earn an income and meet household expenses. “My heart breaks, really, thinking about what we are asking of caregivers. I feel personally that I’m collateral damage in all of this.”

One participant, Marion* (name changed to protect privacy), provides 131 hours of support to her son each week. She fears the cuts will increase her support hours to 154, pushing her beyond capacity. “I will have to accept it will be impossible to continue to care for my son at home,” Marion shared, lamenting that her extensive unpaid support doesn’t count towards high-support needs recognition.

“The worst part is knowing you did the best you could but cannot provide the care your vulnerable child needs because the scheme thwarts you,” she added, highlighting her desire to support her son at home for many more years.

New Powers, Limited Recourse

Previously, individual participant funding packages were determined based on each person’s unique circumstances. However, the government’s new “support determination” powers allow ministers to make broad changes to plans that cannot be appealed.

The safeguard is intended to address potential funding gaps for those needing 24/7 care. For example, if someone funded for four hours of community time now faces a 50 per cent cut, they would theoretically need two additional hours of in-home support to maintain 24/7 care.

Participants who meet the revised eligibility for the safeguard have 90 days to apply for a “plan variation,” an adjustment made by the National Disability Insurance Agency (NDIA). While a high support needs variation can provide additional funding for in-home support, it cannot restore funding for social and community participation.

Social Isolation and Safety Concerns

“Someone does not stop having 24-hour support needs because their family is providing part of that support unpaid,” Maeve Kennedy observed. “If anything, those are exactly the circumstances where a major funding reduction could put the person and their family at greater risk.”

Increasing funding for at-home support, instead of reinstating community access, risks greater social isolation and a reduced quality of life for people with disability. Safety is also a concern in residential facilities. An NDIS Quality and Safeguards Commission review found that group homes are “high-risk environments” for people with disability, with frequent reports of neglect and abuse. The report concluded that social isolation worsens these risks, while community connections offer crucial security.

“When people with significant disabilities are hidden out of sight and parked in group homes or isolated day programs, they are not safe,” stated advocate and parent Sam Paior. “Research shows us over and over that being part of community is what makes people safe.”

The Unseen Cost of Unpaid Care

The government’s own impact analysis acknowledges that these changes are “likely to increase informal caring responsibilities, which may impact levels of social and economic participation for female carers.” In 2022, nearly 70 per cent of primary carers were women.

It’s common for families to provide substantial unpaid support for adults with disability, often equivalent to more than a full-time job. A 2020 Deloitte Access Economics study estimated it would cost the government almost $78 billion annually to replace unpaid care with paid support.

If these funding changes lead to more people moving into NDIS-funded residential homes, Maeve Kennedy warns this “may reduce people’s choice about where and how they live and ultimately create greater costs for the NDIS,” noting that funding a participant in a group home costs, on average, $343,500 each year.

Exemptions and Challenges in Application

The government has exempted a small number of supports from the cuts, including employment supports, behaviour supports, and high-intensity supports like PEG feeding and catheter management.

However, these exemptions can only be applied if the NDIA has accurate and current records of a participant’s needs and how their plan is spent, which is not always the case. Fiona Lawton explained that her family has extensive evidence of Connor’s need for high-intensity community support, but they haven’t been given the opportunity to present it through a plan reassessment.

What This Means for You: Next Steps

For NDIS participants, families, and providers, these changes bring significant uncertainty and challenges. It is vital to understand the new criteria for the “high support needs” safeguard, particularly the distinction between “requiring” and “being funded” for 24-hour care, and the $215,030 budget threshold.

If you believe you or your loved one might be eligible for the safeguard, you have 90 days from its implementation to apply for a “plan variation” through the NDIA. Remember that while this variation can increase funding for in-home support, it cannot restore cuts to social and community participation funding.

Ensure all your support needs, especially high-intensity or medically required supports, are accurately documented and communicated to the NDIA. If you encounter difficulties, connecting with disability advocacy organisations can provide guidance and support.