Submission 1596

Submission 1596

Submission to address aspects of the proposed legislative changes to the NDIS Bill.

Introduction: I am aged 80 years and am the mother, nominee and disability advocate of a 51- year- old daughter who was born with Spina Bifida including hemiplegia, (a one-sided disability with no feeling or movement in one leg, and the same arm also affected.) My daughter lives independently in her own unit where she has resided for over 22 years. She worked for 18 years in mainstream workforce but her health has deteriorated significantly over the past 10 years. She is now a high risk of pressure injuries and surgical intervention, is power wheelchair dependent. Her needs are categorized as High Dependency. Using some references to professional publications, there are two key aspects of the proposed legislative changes that I would like to address:

• Reduce social, civic and community budgets by 50%. Only limitation is for the Minister to have regard for safety of participants. The decision cannot be appealed.

• Are we returning to banishing severely and permanently disabled participants from society, to not be seen or be heard?

• So much progress has been achieved since the NDIS made choice and control part of the scheme. Disabled people have been out and about, in the workforce, volunteering and being a part of the community. Doctors, Occupational therapists, Physiotherapists and the general public have all welcomed and valued their inclusion.

Submission 1596

• For those severely disabled, categorized as High Dependency who live independently and require assistance to access the community, will they now be restricted - unable to attend a football match, go to a pub where a band is playing, dine in a restaurant, or go to their local supermarket or attend medical appointments with the necessary support?

• The extent to which the health and safety of participants would be affected if this budget were cut by 50% is of great concern. For the disabled and most especially for those with High Dependency care needs, it would result in a risk of harm - physically, emotionally and psychologically.

• Denying a disabled person sufficient community access constitutes profound physical and emotional harm. It drastically increases the risk of severe psychological distress, anxiety and clinical depression. redacted

• Prolonged social isolation impacts physical health, leading to a higher risk of chronic conditions like heart disease, loss of independent living skills and accelerated cognitive decline.redacted

• As a marginalized group within society, people with disabilities are at higher risk of low social connectedness with a lack of social interactions, participation in community activities, and meaningful connections due to physical, social, and systemic barriers. This isolation can negatively impact mental and physical health, which in turn reduces the overall quality of life.redacted

• Reducing this budget by 50% could potentially have the impact of reducing participants with High dependency needs to bed-bound invalids subjecting them to a risk of harm with negative health outcomes - an increased risk of pressure injuries,

Submission 1596

hospitalization, social isolation, increased time in bed and associated pain, reduced quality of life.

• Studies confirm that increased social participation for people with physical disabilities leads to improved health and well-being, reduced mental illness, greater life satisfaction and a higher quality of life.4

Recommendations:

• The Bill to Reduce social, civic and community budgets by 50% be amended to exclude participants with High Intensity supports.
• High intensity participants are already restricted from participating in the community due to their physical and health limitations that affect day-to-day life.
• Participants should be supported to achieve high levels of well-being despite their condition.
• A limited allocation for those with High Intensity supports, ought not be implemented due to specific risks of harm - physical, emotional, and psychological.
• Supermarket shopping and assistance to attend medical appointments not be counted as community participation. These are activities of daily living with the necessary support for significantly and permanently disabled participants who are unable to do this for themselves.
• The individual circumstances, living environment and age of the participant and family need to be considered. Previously available informal supports are no longer able to fill the gap with a reduction in social and community participation – parents, grandparents are either aged or deceased, or dealing with their own health issues.

Value for money

4 Enhancing Social Participation for People with Disabilities: Networks and Support • Psychology Town

Submission 1596

Value for money assesses whether the benefits of a service, project or investment justify the costs involved. Within the NDIA, Value for money has been used as a justification to cut participants plans. This has necessitated a further Review of a Decision and/or a progression to the Administrative Review Tribunal to obtain a satisfactory outcome. In the above scenario, the associated costs to the NDIA have been very significant, surely not cost effective nor value for money, having effectively wasted large sums of money, caused enormous stress and anxiety for participants and their families. Functional Capacity Assessments carried out by competent, professional Occupational Therapists ought to suffice in the first instance with recommendations adhered to. Social return on investment (SROI) is a method for understanding a broader concept of the value of an intervention by incorporating social, environmental and economic costs and benefits.5

Recommendations:

When evaluating Value for Money take into account the following statement: The relative importance of quality- of- life dimensions for people with a disability differs to people without a disability. Quality of life is a key outcome for economic evaluation and for assessing the impact of disability care policy and practice in Australia and internationally. It is important that the effectiveness of interventions is measured and valued in ways which are fully reflective of the quality- of- life preferences of people with a disability.6

5 Evaluation and Value for Money | Australian Institute of Family Studies 6 Assessing the relative importance of key quality of life dimensions for people with and without a disability: an empirical ranking comparison study - PMC