Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100 Parliament House Canberra ACT 2600

Thank you for the opportunity to make a submission to the inquiry that the Joint Standing Committee on the National Disability Insurance Scheme (JSC) undertakes into general issues around the implementation and performance of the NDIS. I wish to raise issues around the governance of this scheme and to recount my particular experiences as a person who has experienced significant disability over many years.

I note that the JSC is tasked with inquiring into the implementation, performance and governance of the National Disability Insurance Scheme. My concern relates to the decision making that identifies who is eligible for assistance through the NDIS.

NDIS and older people

My personal experience has led me to conclude that the exclusion of older people from the NDIS is both arbitrary and discriminatory and that there are significant gaps in the support available to older people as compared to those covered by the NDIS.

At the time the NDIS was implemented, it was assumed there was a degree of equivalence between supports available for people with a disability in the aged care system and those that would be provided under the NDIS. The criticisms made at that time and subsequently clearly dispute this assessment12.

This lack of equivalence in the support offered to people with disability according to their age reflects a number of factors including:

• Program goals that are directed at different outcomes.

The Commonwealth Department of Health website states that:

“The CHSP [Commonwealth Home Support Programme] provides entry-level support for older people who need some help to stay at home. Service providers work with them to maintain their independence. Support can include help with daily tasks, home modifications, transport, social support and nursing care…”

This contrasts markedly with the objectives of the NDIS as listed in National Disability Insurance Scheme Act 2013 (NDIS Act). The NDIS objectives include:

Supporting Principles

• supporting the independence and social and economic participation of people with disability
• providing reasonable and necessary supports, including early intervention supports, for participants
• enabling people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports
• facilitating the development of a nationally consistent approach to the access to, and the planning and funding of, supports for people with disability and
• promoting the provision of high quality and innovative supports to people with disability.

2. The comparative expertise and capability within the NDIS and Aged Care support programs with respect to disability

This point was discussed in the opinion piece published on the ABC Ramp up site in 20143 and referred to above. The article notes that:

“… the kinds and persistence of disability presenting in the disability system are more varied than in the aged care system, requiring a greater diversity of responses. They involve a large mix of conditions (and co-morbidities), a wide span of intellectual capabilities, complex behaviours and support requirements…

Aged care lacks the expertise to adequately support people with disability, especially significant disability. The philosophical differences between the care requirements of each group are significant. Society now accepts in disability support an ethos of independence and empowerment - a rights- based approach. Historically, this has been much less the case in the aged care sector, which is more to do with personal assistance either in the home or aged care facility. There is no sense of the broader context of a person’s life goals and community participation“

My story I was diagnosed with a Primary Osteosarcoma in my left hip and/ pelvis in March 1996 at age 50. Osteosarcoma is a type of bone cancer4 that most often affects younger people and is quite rare amongst older people.

I have documented below how this illness has left me with a significant disability and what I have done to adapt to the impact it has had on my life to ensure I can live a relatively normal life in light of the restrictions this has placed on my mobility and the constant presence of high levels of pain.

At the time of surgery, my Peroneal nerve was damaged effectively leaving the lower leg with weakness in some areas and complete paralysis of Doris-flexed muscles. Due to the surgeries where the 5th Lumbar dermatome and cutaneous nerve were

Page 3

excised or damaged there is also numbness of the left buttock with poor circulation in this area and the left leg and foot. Weight bearing is tolerable with crutches and a leg brace to support the leg and to accommodate the drop foot. I require a special built up shoe or boot to compensate for the difference in leg length.

This is permanent situation and I will always need aids to keep me independent. The boot and brace also add protection from soft tissue damage which could and does occur due to everyday knocks. This can potentially create more severe damage due to the lack of sensory perception and feeling due to the poor circulation In this area.

I have had many trips to hospital, suffered from the complication of MRSA and many infections. I had all the metal taken out of my body after rejection of the metal prosthetic inserted to compensate for the removal of my left hip bone and part of my pelvis. I cannot have a metal prosthetic put back. I contacted MRSA while in hospital after a fall.

My experience with seeking support and assistance At present, I receive an Aged Pension and have been assessed for some support under the Commonwealth Government’s Home Support Programme. Consequently, as a 75 year old, I am unable to access the NDIS.

My experience of seeking assistance is that the system is highly bureaucratic, slow to respond and designed to cover the needs of the frail rather than someone like me who is determined to remain as independent and as active as possible and to ensure I make best use of my remaining potential. I am confronted with a process that is difficult to navigate and which deprives me of effective control over how I achieve these goals for myself.

I could greatly benefit from a range of support services and equipment that are more individualised and responsive to my needs than currently available. This would make my life so much easier. I have described below the difficulties I have had in obtaining the support I need to manage the physical and mental challenges I confront on a daily basis. As you will see, the type of support services and assistance I require need to be tailored to my quite specific needs

Two years ago, I broke my brace. After visiting the physiotherapist, I ended up at the orthotist who could supply me with a new brace for $1300.00. This was without financial support as this would take three years to organise approval or they could apply for emergency funding but this would take nine months to process. I cannot walk even with crutches if I don’t have the brace.

For the past twenty five years, I have walked using crutches. I also ride a power assisted bike, not an electric bike to travel around my local neighbourhood and further afield. I cannot use an electric bike as this requires you to push though both pedals and I ride with one leg only.

Riding makes getting around so much easier but crutches and bike are not a good match. I have been able to find fold up crutches that I can carry on my bike. This has given me much more freedom and enjoyment and more interaction with other

• people. I ride with a group of people and being able to mix with them does a lot to improve my mental health and provides a boost for my self esteem.

But once again, I am confronted with quite expensive equipment that needs to either tracked down or personalised to my requirements and made available as quickly as possible. The fold up crutches are not standard and consequently are both expensive and manufactured by only a small number of overseas companies. The crutches need to be fold-up because they are an essential part of my bike riding. They also need to be designed with ergonomic handgrips because my hands give me lots of arthritic pain due to the fact that I use my hands in ways that push them beyond normal usage. My power assist bike has been adapted to my needs and requires repairs and regular maintenance. My footwear needs to replaced regularly and to be made by an appropriately skilled bootmaker.

The constant and high level of pain requires me to take stronger and larger amounts of pain killers than I would like and has forced me to seek out support to manage this pain. It has also left me prone to depression.

I stopped working 1996 and went on a Disability Pension in1998 when my marriage broke down. I did try going back to working part time but the bullying was too degrading as I was being told all the time I needed to move faster. I walked away. I did try working as a dressmaker from home but people were unwilling to pay a proper return believing because you are working from home you could charge less.

I go to the physiotherapist regularly, to relieve my very tight muscles on the over worked right side of my body. I swim three mornings a week but even at the pool I am subjected to a degree of prejudice from people who consider I should not be allowed to get in and out of the pool by myself. The swimming is the best feeling of doing something normal even if limited by my own style and pace.

I have tried to live my life as close to normal as possible. However, this requires the use of appropriate equipment and support. I believe one should not wrap oneself in cotton wool but try and live life as best as one can. As a person with a disability, you learn to keep thing behind closed doors so your disability doesn’t define you. This means that on most days, I am on my bed by about 7pm as the body is tired and uncomfortable. This is as a consequence of the top part of my body coming down hard on the sciatic nerve causing high levels of pain. I do take a considerable amount of pain relief, more than I would like as this has the potential for more damage on the rest of my body.

My experience has been similar to that of Peter Norden, founder of Jesuit Social Services, prison reform advocate and honorary fellow at Deakin University as reported in The Age on 3 March 2021. Dr Norden says:

‘‘ I’ve been working at a fairly high level – teaching and writing and research – and I couldn’t understand what it was all about. When I started trying to change providers, there were so many barriers and hoops to jump through that you almost felt it was a waste of time; you make so many damn phone calls. I found it bureaucratic, complex and difficult to feel any sense of control or that I was a partner in this…

“It seems to me it’s not just a shortage of money, it’s a system that needs to be reformed. People who are not at a super-advanced stage like myself, whose brains still mostly operate OK, want to be able to use their own judgment to make choices, and to reallocate services as their needs change, not to be on a waiting list for a year or two.”“

I thank you for the opportunity to contribute to your review of the NDIS. Please contact me if you wish to discuss anything I have raised here.

Heather Hall

7 March 2021