NDIA Accountability Project

Respiratory physiotherapy and assistive technology for complex physical disabilities

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Future Generations Bill

Dear Committee,

Thank you for taking time to seriously consider the impacts of the proposed “Future Generations” Bill.

In my work with Australians who have complex and significant physical disabilities, I have serious concerns about many of the proposed changes. I’m sure you will hear from my colleagues and Occupational Therapy Australia about the proposed changes to the eligibility and functional capacity assessments, ministerial powers, restrictions on accessing unscheduled plan reviews, and use of algorithms and AI to design plans.

I particularly want to express my STRONG concerns about the proposed 10% reduction to capacity building supports and 50% reduction to social, civic and community participation supports, applying indiscriminately as of 1st October. I would like to see this part of the Bill completely scrapped for the following reasons:

  • “Capacity building supports” may sound like a luxury, like we’re teaching someone how to make a cup of tea. But for the participants I serve, these are essential allied health supports that keep them alive (quite literally in the case of respiratory physiotherapy), keep them out of hospital, and prevent deterioration of their disabilities. Reducing these supports will lead to higher care and support needs over the medium to long term.

    • In my own work (funded through the Capacity Building – Improved Daily Living budget), I assess people of all ages who have complex physical disabilities such as cerebral palsy, spina bifida, Batten disease, Rhett syndrome, and hereditary spastic paraparesis, to identify the best assistive technology to support them to sit up and to be mobile. Without the correct equipment, they can’t sit up or move about safely. Most of the equipment I recommend includes a mobile base (wheelchair), a specialised seat cushion to reduce the risk of pressure sores, and a specialised back support to help them sit as symmetrically as they comfortably can. Most of my clients also require multiple additional postural support pads, such as against their legs, arms, or trunk. I also teach the client and their support team to use the equipment safely and maintain it. This is all a lot of work and takes many hours.

    • Most of my clients also require physiotherapy (musculoskeletal and respiratory), speech pathology (for communication and for safe

Social, Civic, and Community Participation Supports

swallowing), dietetics, orthotics, psychology/counselling (due to high prevalence of depression & anxiety related to their disabilities, however may have a hard time accessing it through NDIS). None of these supports are optional, or just for fun. They are essential to promoting participation in normal life activities, making complex people easier to care for, and are preventative against deterioration of participants’ disabilities and hospitalisations.

  • “Social, Civic, and Community Participation supports” may also sound like a luxury, as the media has been portraying. However, for the participants I serve, these supports are essential for them to access medical appointments, including therapies that prevent their conditions from worsening.

    o This budget is used for ensuring “Full and effective participation and inclusion in society,” (UN Convention on the Rights of Persons with Disabilities, guiding principal) whatever that means to the individual. For the participants I serve, it ranges from going for a walk down the street (being pushed in their wheelchair) on a sunny day, attending hydrotherapy at the local pool, participating in volunteer work, to attending a pub lunch with friends. How would you feel if you or your family members were denied access to these basic parts of participating in society? If you had to stay home apart from essential medical appointments?

  • Cutting these budgets by a set percentage for everyone is UNFAIR. Many participants are already underfunded due to recent cuts in these areas and are suffering as a result. Some may be over-funded. Cutting by an arbitrary amount for all participants is going to put some participants in danger. We are dealing with decisions that effect people’s actual lives, individual and unique lives, with unique needs and goals. Any changes to participants’ budgets need to be reviewed on an individual basis with due regard to the evidence supplied for each participant’s disability needs and circumstances.

Furthermore, I am very concerned about the Bill making it harder for participants to access unscheduled plan reviews. Many of the participants I serve have complex disabilities that degenerate over time. Degenerative episodes can happen suddenly and I want to make sure that people can access plan reviews at short notice if:

- Their condition has worsened, leading to higher/different support needs.

- Their support providers (formal or informal) have changed the support they can provide, which requires a new care arrangement.
  • Their environmental modifications or assistive technology supports have broken or changed, requiring additional funding for urgent assessments/replacements.

Sincerely,

Amy Hilaire

Occupational Therapist & Assistive Technology Assessor

Niche Allied Health

Work days: Monday, Tuesday, Wednesday

NICHE ALLIED HEALTH