General Submission: Joint Standing Committee on the National Disability Insurance Scheme

Introduction

This submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) has been prepared by with assistance from advocacy service provider, Aged and Disability Advocacy Australia (ADA Australia).

permits this submission to be made public, with personal identifying information removed.

would welcome an invitation to appear before the Committee to explore the issues she has identified in terms of NDIS performance, and her recommendations for improving value-for-money service delivery.

Executive Summary

•     is a charismatic, fiercely independent, and resilient 30-year-old woman. She is an
  

entrepreneur, not-for-profit CEO, tertiary student, para-athlete, coach, and award-winning disability advocate and trailblazer. has a wonderful media profile and is keen to continue to showcase the incredible achievements of people with a disability. She is tenacious and is determined to meet and exceed her life goals despite being faced with significant and increasing disability impacts.

•     is single, lives on her own with her dog,          , and experiences the severe and
  

progressive impacts of spastic quadriplegic cerebral palsy with dystonia and ataxia.

•     is predominantly a wheelchair user and is reliant on a significant amount of assistive
  

technology and individualised disability support to enable her to live a good and dignified life. has a wheelchair-accessible vehicle that NDIS modified.

•   receives the single Disability Support Pension (DSP).
  

•  has been a full-time university student since 2018, studying two degrees – Social
  

Welfare and Occupational Therapy, and graduating with her first degree in February 2024. However studies have been interrupted as she has had to take a 6 month leave of absence on two occasions due to the direct and negative impacts of NDIS decisions on her housing security and disability support needs.

• In the past 12 months has experienced many challenges and hardships that highlight current issues within the National Disability Insurance Scheme (NDIS), the delivery of mainstream services to people with a disability, and the intersection between the two.
• These decisions have long-term impacts on quality of life, her ability to graduate from university and to seek gainful employment.
• As a direct result of the outcomes and timing of NDIS decisions has:
• Been unable to secure Specialised Disability Accommodation (SDA) High Physical Support (HPS) accommodation on the Gold Coast
• Required a social admission to hospital (35 days) due to insufficient funded support and a credible risk of harm

• Required to leave the hospital due to financial hardship and inability to meet the Department of Health co-payment ($74.20 per night) on the Disability Support Pension (DSP)
• Been homeless, including sleeping in her car and on the floor of friends’ homes
• Experienced significant financial hardship because of the need to pay for the storage of her medical/disability-related equipment
• Experienced functional decline due to the inability to store and access essential disability-related equipment/assistive technology in a 1-bedroom Medium Term Accommodation hotel room
• Experienced multiple falls and injuries and an increase in need for funded support because of her functional decline and lack of appropriate support
• Deferred her tertiary studies due to her housing insecurity, functional decline, mental health distress, and trauma.

Accommodation

9. is assessed by the NDIA as eligible for High Physical Support (HPS) Specialised Disability Accommodation (SDA) 1 resident, 1 bedroom apartment on the Gold Coast.
10. This is despite numerous requests for 1 resident, 2 bedroom SDA due to the need for onsite overnight assistance due to functional impacts, and the need to store and access medical/assistive technology equipment essential for daily use.
11. In March 2022, received a tenancy agreement from a SDA provider for a 3-bedroom house with onsite overnight assistance (OOA) in Pimpama. was advised this was for sole tenancy which met her needs and she moved from her 1-bedroom public housing apartment into the house.
12. In July 2023, NDIA released the updated SDA pricing arrangements. At this time found out that the SDA provider had been invoicing for her full SDA amount ($90,172.81), instead of the limits applicable for 1 resident in a house ($41,424).
13. On 24 August 2023, the SDA provider advised that she had to co-tenant, or her tenancy arrangement would be terminated. This was due to the NDIA no longer approving the full invoice from the SDA provider ($90,172.81). is aware that there were numerous NDIS participants in similar situations.
14. It is well known that Australia is experiencing a housing crisis for the general population. This is exacerbated for people who require HPS wheelchair-accessible accommodation.
15. explored all available wheelchair-accessible housing options on the Gold Coast, including private rentals, caravan parks, and SDA properties, reviewed 50+ properties, and identified only one suitable (1) HPS SDA property that had 2 bedrooms and would permit a pet and independent support workers.
16. It was clear to that, in a current housing crisis, finding suitable wheelchair-accessible accommodation on the Disability Support Pension was extremely difficult, including because of the sparse supply of SDA HPS housing.
17. Unfortunately, despite numerous escalations, the NDIS Home & Living (H&L) decision and revised plan, including an accurate SDA amount took, so long (4 months) that missed out on securing the property.
18. sought a compassionate extension from the SDA provider, who allowed her another 2 weeks to find a property. appealed to the Minister for the NDIS for a compassionate

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temporary waiver of the invoicing caps to enable her to have a few months over Christmas to find alternative accommodation. The Minister did not respond. 19. On 13 November 2023 sustained a fall at home and was taken to hospital with a fractured wrist. While she was assessed as medically fit to discharge, she required 24/7 support during her recovery. As did not have that level of support in her current NDIS Plan she became a social admission to the hospital while the Hospital Interface branch submitted a Change of Situation request. 20. On 5 December 2023, had to relocate from her previous Specialist Disability Accommodation (SDA) as her sole tenancy arrangement was terminated. The SDA owner required a new shared tenancy arrangement for the house, which was unacceptable to as she chooses to live alone. This is right under Article 19 of the United Nations Convention of the Rights of Persons With Disability (UNCRPD), “persons with disabilities should have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”. 21. has never shared a property since living independently for years, including as a sole tenant in a public housing apartment, and does not wish to co-tenant at any stage. It is her choice to live on her own. has a trauma history that makes it unsafe and unsuitable for her to co-tenant and this is described in a letter from her Clinical Psychologist. 22. By December 2023 was homeless, in hospital, with no housing options, and insufficient support to safely leave the hospital. She was separated from her dog, and experienced significant mental health and emotional distress. 23. and her Support Coordinator were able to submit another urgent Change of Situation through the Hospital Interface Branch and was granted 6 months of MTA to enable her to be discharged from hospital. However, her support funding was not increased despite exhaustive evidence from medical and allied health professionals to support an increase from 6 to 10 hours per day of assistance. 24. checked into the MTA wheelchair-accessible hotel 1-bedroom apartment on 19 December 2023. 25. was required to place the majority of her NDIS-funded essential medical and disability equipment and Assistive Technology (AT) in an offsite paid storage unit (National Storage Robina) as there is no room for it in the one-bedroom apartment and no safe storage facility at Quest Apartments. 26. Since discharge from the hospital, has experienced functional decline due to the lack of access to her Assistive Technology (AT) disability/medical equipment that builds strength and maintains function, and the result of spending extensive time in her power wheelchair. This is because her current temporary one-bedroom apartment (Medium Term Accommodation) has insufficient room for to house her equipment and no safe, hygienic storage on site. 27. She has experienced several falls due to her inability to transfer and mobilise independently with her AT, particularly in the evenings and overnight when accessing the toilet without a support worker present on shift. This is exacerbated by the lack of disability-specific appropriate facilities and furniture in the bedroom, bathroom, and toilet and the malfunctioning of her aging power wheelchair. 28. As a direct result of the NDIA actions and decisions, her physical and mental health and well- being are reported to be severely negatively impacted, with severe distress with potential long-term consequences. and high risk of further decline.

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29. A comprehensive Functional Capacity Assessment (FCA) has been completed and has determined that this is not an appropriate, safe or suitable accommodation for . There are credible risks of ongoing harm, functional decline, and the likelihood of increased support needs over time.

30.  requires an SDA re-assessment for a 1-resident, two-bedroom HPS apartment for the following reasons:
    

    a. is a wheelchair user who requires circulating space for her manual and power wheelchair, as well as room to transfer to her walker and standing frames. b. uses several large pieces of specialist equipment to support her transfers and mobility. This equipment is essential in helping maintain independence and dignity, maintain functional capacity, and reduce risk to her health and well-being. She must also ensure a safe working environment for her disability support workers. c. The medical/disability-related AT can’t be stored in her bedroom or the living room as it would prevent free movement and could be a safety risk for her and her support workers. d. The Occupational Therapist recommends an extra room as a safe and hygienic place for to store her equipment and for staff to safely access her Assistive Technology as required. e. This helps pursue her goals as the second bedroom will allow space to set up an appropriate desk for the purposes of her tertiary study, working from home, and running her not-for-profit. This will increase her independence.

31. A two-bedroom apartment represents better value for money by reducing future support needs through the provision of a living environment and model of care aimed at maximising function and mitigating the impact of her current circumstances upon her physical and mental health whilst developing her independence.

32.  requires an SDA with on-site overnight assistance (OOA) due to the severity of her dystonia impacts and the episodic/fluctuating and unpredictable nature that requires active overnight support for up to 104 nights per year. She requires onsite shared support (OSS) to enable her to access support with toileting and re-positioning overnight for the remaining nights.
    

33. The annual difference in cost between a single-bedroom, one-resident apartment with HPS and OOA and a two-bedroom, 1-resident apartment with HPS with OOA is less than $4,000, based on the current SDA Pricing Arrangements ($101,703 v $105,530). This represents value for money, and the second bedroom may also permit inactive overnight support for in lieu of active overnight support.

34. On 24 April 2024, the NDIS H&L team again declined request for a 1-resident, 2- bedroom HPS SDA and additional support request.

35. On 15 June MTA funding was exhausted and she had not been able to secure any alternative NDIS-funded SDA accommodation.

36.  was extremely fortunate that an urgent application to the Department of Housing for wheelchair-accessible social housing had been successful and    was able to secure a 1resident, 2-bedroom social housing apartment in Palm Beach in mid-June 2024.
    

37.    is perplexed that she can meet the criteria for a 2-bedroom social housing apartment but is not able to meet the criteria for a 2-bedroom SDA HPS apartment despite submitting the same evidence to both agencies.
    

Errors and Accountability

38. The NDIA Planners have made numerous errors in      NDIS plans, and each time these
   have taken months to correct. Some of these errors have had a direct impact on
     ability to apply for SDA accommodation and directly impacted her housing security.
39. For example, in June 2023       plan was incorrectly changed from SDA up to $90,172.81 to
   $41,424 per year as the planner misread the SDA eligibility. This error was not corrected for
  4 months until October 2023, when it correctly read 'up to $100,431' (new pricing limit).
   During this critical period,    was not able to apply for appropriate SDA properties as her
  SDA funding in her plan was insufficient for even 1 bedroom, 1 resident.
40. Unfortunately, despite numerous escalations and complaints, the NDIS H&L decision and
    revised plan including an accurate SDA amount took so long (4 months) that     missed out
  on securing the property.
41.      NDIS Plans have not reflected her revised submitted goals, funds management has
  been incorrectly changed to NDIA managed for some supports, taking months for this
    administrative change to be corrected, during which time     has had to forgo access to
   her preferred providers.
42. In October 2023,      funds were changed by NDIA delegate from self-managed to plan-
  managed based on an allegation of overuse of funds – however    had submitted in June
  2023 that her plan was insufficient to meet her needs. She was not afforded any details
    regarding the alleged overuse, nor any right of reply.
43. Despite numerous interactions with the NDIA updating      address to Robina Hospital
  and then Quest Apartments, the NDIS H&L decision letter was sent to her previous SDA
   address in Pimpama. Despite numerous enquiries with the NDIA, no one advised     of this
    decision, she received no correspondence through her Services Australia/MyGov inbox and
  was refused a copy of the letter when she contacted the NDIA National Call Centre, citing
    'privacy grounds'.
44. In June,    had to present to the NDIA Robina office and request a hard copy of the
    decision letter.

Emotional Trauma

46.     has experienced considerable trauma as a direct result of the NDIA decisions.
47. She has experienced preventable and avoidable and costly:

• Hospital admission
• Homelessness
• Medium Term Accommodation
• Repeated Injury
• Psychological distress including Post Traumatic Stress Disorder.

Financial Impacts

45. Centrelink will not pay rental assistance for DSP recipients during periods residing in hospital
   or NDIS-funded Medium-Term Accommodation.
46. However, the Hospital and Health System requires a payment of $74.60 per night for stays

greater than 35 days. 47. NDIS will fund Medium Term Accommodation (MTA) for people leaving the hospital and awaiting their SDA or other accommodation. However, NDIS does not permit the use of MTA funding to cover the hospital bed rate, even if there are no MTA properties available. 48. For a DSP recipient who requires wheelchair-accessible accommodation, this is an untenable situation to pay $75 per night or $575 per week to stay in the hospital. 49. was able to secure the only wheelchair-accessible MTA-funded property on the Gold Coast leading up to Christmas. 50. NDIS will only fund MTA costs for the participant, for up to 6 months if required. However, NDIS will not cover the storage of NDIS-funded and approved medical aids/AT equipment during this period. These storage costs are prohibitive for a person receiving the DSP. The National Storage unit cost approximately $385.00 per month. 51. The MTA rate is capped at $146.75 per night, however the Quest MTA apartment rate was $199.00 per night including the car parking for wheelchair-accessible van. The MTA rate is not varied for more expensive jurisdictions such as the Gold Coast. 52. was looking for alternative accommodation right across the Gold Coast region, however as it was approaching the Christmas and school holiday period there was no alternative suitable or affordable accommodation available. 53. has had to make numerous financial decisions including deferring university enrolment due to the inability to meet her study costs because funds have had to go toward insurance of her essential mobility van or payment of storage costs for her mobility aids.

Recommendations to Improve NDI Performance and Interface with Other Agencies

High-Risk Housing Navigation Support

Recommendations

• Provide comprehensive information to participants about their rights, available housing and accommodation supports, and the processes involved in accessing these supports. This should include detailed guides, FAQs, and dedicated helplines.
• Offer dedicated specialist housing navigators or case managers to assist participants in navigating complex housing situations. These professionals should have expertise in disability housing options and be able to provide tailored support and advice.

SDA enrolment

• The NDIA was responsible for ensuring the SDA property in Pimpama was correctly enrolled. It was enrolled as a High Physical Support (HPS) property, but the SDA provider admitted it was only at the Fully Accessible Standard when moved into the property. It took 9 months for the property to reach the standards for HPS enrolment.

Recommendations

• The NDIA must ensure all SDA properties are correctly enrolled according to their actual support standards. Providers should not be allowed to falsely advertise or market properties as meeting higher standards than they do.
• Implement regular audits and stringent verification processes for SDA properties to confirm they meet the advertised standards before enrolment.

SDA invoicing

• The NDIA was responsible for ensuring that all SDA quotes and invoices were appropriately processed within the SDA Pricing Arrangements. The NDIA permitted the SDA provider to invoice for the full SDA amount from plan, instead of the 1 resident 3 bedroom with OOA rate. This encouraged the SDA provider to offer the property to as a 1 resident house when the SDA framework does not contemplate a 1 resident house.
• The NDIA is responsible for the SDA Payments and Price Limits. When it released its Pricing Review on 1 July 2023, this triggered a change to how some SDA providers had been invoicing and receiving payments. When NDIA closes ‘loops holes’ to limit or constrain providers from overcharging or incorrectly invoicing there may be immediate and significant consequences for NDIS participants.
• In case the changes to how SDA invoices were managed resulted in a change to her tenancy arrangements and 60 days’ notice to co-tenant or vacate the property. All requests for the NDIA delegate to exercise discretion to enable the SDA provider to continue to invoice the full amount until was able to find a suitable SDA alternative went unanswered.

Recommendations

Rapid Response Team

• NDIS participants who require HPS SDA are dependent on NDIS decision-making for their ongoing housing security, without the ability to escalate, fast track or have input into the decision-making process:
  • NDIS makes the H&L decision regarding SDA eligibility and SDA funding allocation.
  • NDIS participants are not able to secure a vacant SDA property unless they have a current H&L SDA decision that matches the funding requirements for the property.
• NDIA was advised that redacted had reviewed 50+ properties and only found 1 HPS SDA property on the Gold Coast that permitted own supports and pets.redacted received preliminary approval from the SDA provider for the property, ‘subject to updated H&L decision’.
• The NDIA were advised of this need, and despite this, the H&L team took the full 4 months to consider redacted needs, and in the meantime that property was leased by someone else. This resulted in redacted needing to access Medium Term Accommodation in a 1 bedroom wheelchair-accessible Medistays apartment for 6 months. The delay in the H&L decision cost the Agency $26,415.00 of avoidable MTA costs.

Recommendations

9. NDIA must establish a dedicated specialist rapid response team to assist NDIS participants at risk of homelessness. This team should be empowered to make quick decisions and provide immediate support.
10. Ensure participants have access to emergency funding and temporary accommodations without lengthy approval processes, especially in crisis situations.
11. Implement strict timelines for NDIS Home & Living (H&L) decision-making processes, especially when a participant has received conditional approval for an SDA property. This ensures timely responses to enable participants to secure suitable accommodations.

Medium Term Accommodation

• MTA funding covers only 1 resident, 1 bedroom temporary costs; in most cases, it provides sufficient funding to cover a 2 bedroom temporary alternative. In this case, it does not consider participants who require 1:1 inactive onsite overnight support. NDIS may either

Duty of Care

• When was living in MTA, the NDIS H&L team was advised that she had preliminary approval for 2 SDA HPS properties that were under construction and due for completion in approximately 6 months. Despite this, the H&L team declined request for 1 resident, 2 bedroom apartment, resulting in losing the possibility of tenancy. The MTA period concluded without successfully finding alternative SDA housing. There was no follow-up from the NDIA despite numerous emails, escalations, and calls to the Agency to determine options.
• exited the MTA-funded accommodation without any alternative NDIS-funded accommodation.
• NDIS participants without appropriate housing navigation support and informal support networks will be rendered homeless as a direct result of failures of the Agency to make timely and appropriate decisions.

Recommendations

13. The NDIA must uphold a duty of care for participants residing in MTA awaiting alternative accommodations. Ensure continuous follow-up and support, preventing situations where participants are left without suitable housing options.

Equipment Storage

• NDIS funds reasonable and necessary medical and disability-related assistive technology including a hi/lo bed, standing frame, walkers, and wheelchairs. However, when a participant is rendered homeless and/or using MTA, NDIS will not fund the necessary storage costs for the equipment.
• If the equipment cannot be stored securely it is likely to be damaged or may need to be sold – resulting in avoidable costs to replace the equipment later on. If the participant is unable to pay for storage or find alternative safe storage for their equipment and the NDIA does not replace the equipment then the participant may be without essential equipment.

Recommendations

Financial risks

• A ‘whole of government’ response is needed to consider the crisis accommodation needs for:
  • NDIS participants who are DSP recipients and
  • who require wheelchair-accessible accommodation and
  • who require 1:1 personal care supports for 6+ hours per day.
• was a social admission to the hospital after fracturing her wrist in a fall when unsupported overnight. Her medical team determined that she was unsuitable for discharge due to lack of appropriate funded support (i.e., required 10 hours of personal care support and was only funded for 6 hours per day).
• However, after 35 days, while awaiting an NDIA-submitted H&L request, was required to co-pay the hospital’s long stay rate. Centrelink ceased rental support when was rendered homeless after her requirement to vacate her SDA and was admitted to the hospital. Rental assistance also did not apply during her period of MTA at the hotel apartment.

Recommendations

Home & Living decisions

• requested a 1-resident, 2 bedroom apartment with the second bedroom being a space for:
  • Storage of medical/disability-related mobility aids and equipment
  • home office for the running of her Not-for-Profit, , and to complete her tertiary studies
  • onsite overnight assistance bedroom for a support worker.
• provided extensive evidence including a detailed Functional Capacity Assessment, manual handling report, physical therapy report (justifying the need for the medical/disability-related assistive technology), and supporting evidence.
• NDIS promotes the involvement of people with a disability in study, employment, and recreation, and seeks to build capacity to reduce support over time.
• NDIS declined multiple requests for a 1 resident, 2 bedroom SDA because did not need ‘medical equipment’, and they did not provide accommodation for overnight support

Workers

The NDIS H&L Home & Living team did not consider or reference all the evidence provided when arriving at their decision.

Recommendations

• Publish explicit criteria required to justify a 1-resident, 2-bedroom SDA, including the necessary evidence needed to support the application. Ensure all submitted evidence is considered in the decision-making process.
• Recognize the importance of providing suitable accommodations that support participants’ independence, including space for medical equipment, home offices, and overnight support workers.

Family & Domestic Violence

• When was told by her SDA provider that she needed to co-tenant or vacate the property, the NDIS Planners, LACs, and other NDIS staff told that a shared tenancy arrangement was reasonable, and NDIS would not fund an alternative SDA arrangement as she had a viable housing option (i.e., a shared tenancy arrangement).
• Had already provided evidence from her psychologist that she had a history of experiencing family and domestic violence, experienced post-traumatic stress disorder (PTSD) as a result and was unsuitable to co-tenant on mental health grounds.
• Her home is her sanctuary. When you are forced to co-tenant you have no control over who comes into your home, who the other tenant’s support workers and services are, and lose all control over who enters your world.
• When you are a single female wheelchair user who has no means of privacy or escape, and a history of trauma, this is an untenable situation.
• NDIS policy can require people to share accommodation and housing and supports without regard for people who have a trauma background and for whom it is unsuitable to share.

Recommendations

• Adopt a trauma-informed approach in all NDIS policies and practices, especially when it involves participants with a history of family or domestic violence. Ensure accommodations and support options are suitable and safe for these participants.

Accuracy and Accountability:

• The NDIA must establish a rigorous review process to minimise errors in NDIS plans and ensure they accurately reflect the participant’s needs and goals.
• NDIS plans must be error-free and reflect the participant’s goals and funds management to ensure continuity of service.
• NDIA must create a transparent and accountable system for handling and rectifying errors, with clear communication to participants about the status and resolution of their issues.
• When a participant submits a complaint, there must be a transparent process that tracks it through to completion with an electronic real-time update process to advise the complainant of the actions and status of the complaint.

• Implement regular reviews of NDIS policies and procedures, incorporating feedback from participants to identify and address systemic issues. Provide complainants feedback when their complaint has resulted in a change to NDIA policy, procedure, or practice.
• Provide ongoing training for NDIS staff and planners on disability rights, trauma-informed person-centred planning, and the specific needs of people with high support requirements.
• Increase capacity within the NDIS to handle complex cases effectively, ensuring staff have the resources and expertise needed to support participants like .

Other Agencies

• Advocate for policy changes at Centrelink to provide rental assistance during periods of hospital stays or while residing in NDIS-funded Medium-Term Accommodation (MTA).
• Improve coordination between NDIS, Centrelink, and housing providers to streamline services and ensure seamless support for participants.
• Establish a dedicated liaison team within NDIS to address intersectional issues such as housing insecurity and financial hardship.