NDIA Accountability Project

Impact of NDIS changes on woman with multiple sclerosis and autoimmune conditions

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Community Affairs Legislation Committee

12 July 2024

Dear Senators,

Thank you for taking the time to listen to and represent the interests of people with disability and their families.

As a 58-year-old female diagnosed with multiple sclerosis (MS) in 2005 in my forties, I am writing to let you know that I do not support some of the Federal Government’s planned changes to the NDIS Act. I am still able to walk using disability equipment, exercise, engage in the community and live independently thanks to the supports I receive through NDIS funding. And my husband has been able to stay in his IT management role rather than become a carer due to these supports.

My disability is permanent lifelong and progressive and like many other neurological illnesses my condition fluctuates wildly day to day, month to month, year to year and responds to variables like the weather and how much activity I have done. MS presents in a highly individual manner and is referred to as a “snowflake disease” because of this individuality and its ability to imitate other conditions. It can be complex to manage, and NDIS delegates have a difficult time understanding it in my experience. Those with MS are predominantly female and diagnosed in their childbearing years. This is the case with the majority of autoimmune diseases. Plus, those with autoimmune conditions are more likely to be diagnosed with another autoimmune disease and develop comorbidities like heart disease. The Bill as it stands does not fully account for people with multiple and interrelated disabilities like me, risking inadequate support that is not tailored to our own individual situation.

These changes could detrimentally affect those with highly variable conditions resulting in a disproportionately effect on women, their young families ad force partners out of the workforce.

Whole-of-Person Approach

The Bill and its amendments are missing a whole person approach. It limits access and funding support to a primary disability, and this may overlook critical needs. A whole-person approach is

Essential

As stated previously, many conditions like mine have multiple interrelated disabilities and comorbidities. A comprehensive plan should consider physical, cognitive, emotional, and social aspects, essuring holistic support.

The legislation should specify who will conduct the needs assessments and how these will translate into budget allocations to ensure that participants can continue to live independently and safely. The thoughts and feelings of people with a disability should be central in anything affecting the NDIS, and co-design should be an integral part of the legislative process to ensure that the voices of those affected by the changes are heard and considered. Co-Design should be mandated not just recommended.

Under the proposed changes to the NDIS, the new needs assessment will determine eligibility and provide the basis for a participant’s plan and budget. MS Australia states:

“The experience of people living with MS accessing the NDIS has been that staff have a limited understanding of their disability and what supports they require. MS Australia is concerned that it will take substantial training and a long period of implementation to get the needs assessment process working effectively.”

Unfortunately, despite these deficiencies there is no clear power written into the legislation for a participant to seek an internal review of their support needs. Nor the ability to request a second assessment if the first is not accurate. It is extremely important this review power is written into the legislation.

Additionally, there are powers which allow the NDIS to change the way your plan is managed based on an inaccurate needs assessment. The legislation does not clearly define when, or how this can occur. Debts now can also be raised. Given problems with the acknowledged problems with local area coordinators and other delegates training there is great potential for mistakes to be made without clear legislative guidance.

Limits on Funding Flexibility

There has been a move away from the current focus on ‘reasonable and necessary support’ towards a more defined list of supports with further detail to be outlined in the NDIS Rules. This list is based on selected elements in the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

I support the submission of MS Australia which states “MS Australia is concerned that the current approach in the Bill is highly restrictive, inconsistent and will limit what supports can be outlined in the NDIS rules. This includes:

  • Highly restrictive wording such as ‘the support…is necessary to support the person to live and be included in the community, and to prevent isolation or segregation of the person from the community’
  • The absence of some important elements of the CRPD including, including:
    • Article 19: The right to live independently - participants should get to choose the accommodation option that best suits their needs and wishes, including the option to live independently
    • Article 27: The right to equal access to work and employment – participants should be able to access employment support to allow them to undertake work
  • The inclusion of health services and habilitation or rehabilitation services which are not currently covered by the NDIS and are generally considered supports provided by state and territory governments
  • No allowance for household goods and equipment such as vacuum cleaners, e-bikes, dishwashers and air conditioning. Access to these can be crucial for people living with MS. For example, many people living with MS suffers from temperature sensitivity and struggle to regulate their body temperature. Access to an air conditioner is the best way to manage this.
  • It is unclear where psychosocial supports fit into this definition
  • Transitional provisions that rely on the Applied Principles and Tables of Support (APTOS) which is not optimal and is inconsistent with what is outlined in Section 10(a) “As a person with MS who was lucky enough and grateful to be funded an e-trike by the NDIS, I find the current selections for what is to be funded very disappointing. My neurophysiotherapist and other allied health professionals credit my ability to walk independently and maintain mental resilience to the provision of this e-trike. I have made substantial physical and psychocial gains because of its use and have ridden in the MS Qld Brisbane to Bay fund raiser. Previously I sat on the sidelines. I understand not everyone with MS is a good fit for an e-trike and nor should it be offered to all. But there needs to be an allowance for some situations where funding may be provided with the right guidance from allied health professionals. I I support the recommendations of MS Australia which state “the current NDIS supports as outlined in section 10(a) are replaced with a more appropriate definition that will allow for negotiation with state and territory governments and co-design with the disability sector before finalisation in the NDIS Rules” Co-design The NDIS Amendment Bill was developed with very limited consultation with the disability sector. And there has been very rushed and limited timeframes for committee oversight and submissions

regarding the Amendment Bill. Changes to the NDIS should be done via a co-design process that

draws on a range of views, skills, experience and interests across the disability community. Because

of the limited consultation with the disability sector there is more chance the decisions taken will not

reflect those with complex needs. Currently in the legislation there is no legal requirement to co-

design. This should be remedied as decisions can be made which might not fully reflect the needs of

participants like me.

In addition, there has been limited easy read material detailing the Bill or its amendments. I believe

for there to be true co-design this needs to be provided as the process continues.

Delegated Legislation

There is a reliance on delegated legislation which is unacceptable given the impact on such large

policy initiative as the NDIS, the impact on individuals and their families and the economic benefits

the scheme brings to the Australian economy. The report False Economy: The economic benefits of

the National Disability Insurance Scheme and the consequence of government cost-cutting. It

demonstrates there is a multiplier effect of NDIS spending – for every dollar spent in the scheme there

is a $2.25 benefit. Researchers suggest this is a conservative multiplier effect estimate. Given NDIS

spending in 2020-2021, the NDIS created a $52billion much needed economic boost during the

pandemic. It is estimated it employs 270,000 people in 20 different occupations.

Given the potential impacts to people with a disability, their families, their employees and the

economy, I believe it is imperative the senate enquiry and parliament takes it’s time enabling consideration of pros, cons and short and long-term implications.

Thank you

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