Submission 1841

Submission regarding proposed NDIS legislation.

I am writing as the sister of two adult brothers with severe disabilities, and as the daughter of a parent who is an NDS participant due to an acquired brain injury and vision impairment, and as the daughter of a parent who is the carer for these family members.

The family I am advocating for live with complex and permanent disabilities (emphasis on permanent). Severe autism spectrum disorder (ASD), intellectual disability, anxiety, obsessive compulsive disorder (OCD), and have complex medical needs that are significantly impacted by their disabilities. As a family, they experience firsthand the daily realities and pressures of navigating the NDIS system while trying to maintain stability, safety, and quality of life.

They live about an hour outside of Adelaide. Accessing services, appointments, therapies, and supports already places considerable strain, particularly due to regional barriers and the complexities of coordinating care for multiple people with disabilities.

Our concerns with the proposed changes in this legislation relate primarily to the following;

• The impact of their social and community supports being reducing or being removed.
• The impact of their capacity building supports being reduced or removed.
• The impact of the changes to the definition of permanence.

Whilst we support genuine efforts to prevent fraud, exploitation and misuse within the NDIS, we are concerned that the participants themselves are being burdened with a disproportionate level of scrutiny and compliance. Resulting in an increased risk of their supports being reduced or removed.

If a participant’s disabilities are permanent, their support plan at a foundational level must also reflect a level of permanence. A participant with permanent disability will have needs that may grow or evolve throughout life stages, living arrangements, medical circumstances and health complications. So naturally ‘as needed’ the participant & their support team if they are lucky enough to have one, should propose review of their plans accordingly. They should not however have to regularly undergo standardised review to justify their ongoing reliance on their existing support plan.

Different planners can interpret the same needs differently. This creates constant uncertainty, stress and fear about whether vital supports will continue. For people with severe and permanent disabilities, the repeated reassessments and inconsistent interpretations can be highly distressing and destabilising.

We are concerned about the increasing reliance on functional capacity assessments and reports without enough transparency or guidance for participants and families. Assessments through simplified or standardised models alone are resulting in reductions to existing support plans. My brothers and father have used large amounts of funding from their plans to pay for functional capacity assessments, only to later find out the reports still did not contain the information the NDIA wanted. Families are left trying to coordinate evidence requirements without clear guidance while repeatedly having to retell highly personal and traumatic details about disability and daily functioning. This process is emotionally exhausting and deeply stressful for participants and carers.

Specific example…

Recently, both of my brothers were unexpectedly scheduled for plan reviews in April (their existing plans were not due to end until August). When we informed one planner that we did not yet have updated reports prepared,

Submission 1841

we were told that it did not matter because the review was “only” to add Specialist Disability Accommodation (SDA) and Supported Independent Living (SIL) into the plan so future housing options would be available when they are ready to move into their own home.

However, during the actual plan meeting conducted over the phone, it became clear the plan decisions had effectively already been made before any meaningful discussion occurred. We were asked for very little input, there was no proper discussion about goals, daily functioning, progress, or changes in support needs and we were then told the reports were too old. When we reminded the planner she had stated reports were not necessary because “nothing else would change” our concerns were dismissed.

Despite this, significant changes were made to supports, including removal of some therapies and decisions stating both of my brothers only require limited 1:1 support for a few hours per day, with the remaining support to be delivered at a 1:3 ratio. This is extremely concerning and frightening for our family because group-based ratios are not always appropriate or safe for people with severe autism, intellectual disability, severe language disorder, anxiety, OCD, communication difficulties, sensory regulation needs and complex behaviours or support requirements. Reduced individual support can increase distress, dysregulation, social withdrawal, behavioural escalation, risks to safety, inability to communicate needs effectively, inability to access the community safely and reduced capacity to participate in therapies, appointments and meaningful daily activities.

There were also major inconsistencies between planners. One previous planner recognised the realities of regional living and approved support hours that accounted for travel time, while the newer plan removed these hours entirely and also removed fortnightly banking support.

One planner provided a shorter one-year plan that at least allowed opportunities for review and adjustment, while another planner who made significant changes without meaningful consultation placed my youngest brother onto a five-year plan. This was extremely frightening because if the decisions in the plan are inappropriate or harmful, we are now forced into lengthy review processes or tribunal proceedings simply to seek reconsideration of essential supports.

Reducing participant supports does not make the support needs disappear, it simply shifts the burden further onto ageing parents, exhausted carers and families already operating beyond capacity. Reduction respite or community participation supports does not reduce the need for them, again this only transfers greater pressure onto already exhausted families and increases the risk of long-term crisis outcomes that are ultimately more harmful and more costly for both families and the broader system. Respite and community supports are not optional extras for families living with complex & permanent disability; they are essential supports that help sustain caring relationships, family stability and long-term participant wellbeing. In my own family, these supports have played a critical role in helping them to remain connected, maintain stability and continue to care for my adult brothers at home and within their community.

We seek genuine consultation with disabled Australians. Ensuring that accessibility, adequate timeframes and meaningful participation are built into the legislative process itself. The people most directly affected by these reforms may be the least practically able to participate fully in the process without substantial support, time, advocacy assistance or accessible materials.

We urge the Committee to ensure that:

• Participant rights and procedural fairness remain central to all reforms
• Independent review and appeal mechanisms are protected
• Assessment tools and methodologies are transparent
• Reforms do not create over-standardisation or automation

Submission 1841

• Anti-fraud efforts remain focused on providers and organised exploitation rather than creating additional barriers for participants
• Mandatory disability-specific training for NDIS staff and planners
• Better understanding of autism, intellectual disability, acquired brain injury, anxiety, OCD, psychosocial disability and complex support needs
• Consideration for regional participants and families facing travel barriers
• Recognition that medical needs are often closely connected to disability supports
• Protection of community participation supports
• Greater transparency around evidence and report requirements
• Clearer explanations for decisions and refusals
• Recognition of evidence from long-term treating therapists and allied health professionals
• A process that takes into consideration an element of permanent support, reducing stress, uncertainty, repeated reassessment, and administrative burden for vulnerable participants and carers.

Participants themselves and/or the families and carers for people with severe & permanent disabilities should not have to continually fight to prove time and time again that their needs are legitimate. They should not need to defend supports that are essential to daily life and community inclusion.

We I ask that Parliament carefully consider the real-world impact these reforms will have on participants with severe & permanent disabilities, complex support needs and their family carers, before passing legislation that may reduce supports or increase barriers to accessing them.

Respectfully, , on behalf of my family member participants and their family carers.