Attachment A:

My son’s lived experience with Cystic Fibrosis – by a mother of a young boy with CF

My young child has cystic fibrosis and my young child will require NDIS services for his disability. That sentence is by far the hardest sentence I have ever written. And even having planned what I want to say, I find my head having to convince my heart again that it is the truth, even as I write it. I would like to remind you of the courage it takes to have to convince someone of your child’s disability and future needs. It is not in most parents nature, nor in the nature of those incredible individuals I have met who live with cystic fibrosis to want to focus on, or openly admit to, their level of disability. We as a family, and we as a community work a great deal on focusing on ability, on inclusion and on fighting for a life that is by-and-large not ‘despite’ having cystic fibrosis, but simply ‘with’ it.

However, it is critical to remember that in order to accomplish these goals, to live a productive, healthy and full-filling life, my son will need NDIS services to support him. As he is young, I don’t yet know what form that will take for him, but I can easily imagine that physical, logistic and other health and lifestyle supports will be essential. Life with my son is a joy, but it is far from the normal childhood experience. He does over 2 hours of medical treatments a day for his lungs and digestive system as well as medicine with every meal and snack. He requires a customized diet and twice- daily nebulizer with physiotherapy treatments. The vast majority of these are both critical to establish early in life and to maintain consistently, in order to maximize life expectancy with cystic fibrosis. They also require financial and other support infrastructure for set-up and maintenance.

Access through the NDIS to respiratory equipment and physiotherapy for example, would be vital for my son to continue to reap the health rewards of early, and consistent, treatments. Other medical needs that would be supported under the NDIS are also likely to occur in his future. As avoiding respiratory infections is critical for people with cystic fibrosis, it is likely he will need to avoid public transport, and instead need private transport to school, university or health appointments for example, which occurs an extra cost. It is also extremely likely that he will require more substantial nutrition and diabetes-related support services in his future. Life with a chronic illness takes its toll mentally and as they say; there is no health without mental health. I fully expect that NDIS-funded psychology services will also play a large roll in keeping my son happy and healthy.

Cystic fibrosis sufferers have a range of abilities and disabilities, and they deserve full and unquestioned access to NDIS services. Making people continually prove how disabled they are, especially when their own medical team can attest to their needs, is neither compassionate, nor ethical in my opinion. It is not something I ever want my son to face.

For this reason, I am appealing to you to support cystic fibrosis as eligible for NDIS funded support. I am publicly advocating for my son’s disability because I never want his successes to be paved by an unending justification of his limits.

Thank you for your time and consideration to include CF to the list of disability types eligible for NDIS funded support.

Attachment A: My lived experience with Cystic Fibrosis.

My disability

My disability (cystic fibrosis) affects multiple aspects of my life and requires a substantial investment of my time and money each day to keep me out of hospital and slow inevitable deterioration. Managing CF is a part time job when I’m stable (21h per week) and can be a full time job when I’m experiencing an episodic exacerbation (50+h per week). During these episodes I require extra support as it takes ALL my energy to manage my disability. In a period of 15 months (2018/2019) I had four hospital admissions and was on Hospital in the home (HITH) for a total of 16 weeks due to lung infections. I experience fatigue that interferes with my function on a daily basis. The fatigue also affects my mental function: I experience impaired short-term memory and higher order thinking when very fatigued.

I spend 3+ hours every day to manage my disability

Even when my disability is stable I need to spend 2-3h every single day on essential therapies to be able to function and to prevent accelerated decline. Neglecting these therapies means I become more symptomatic in a couple days and have reduced function, require more hospital admissions, and become more disabled sooner than if I adhered to the therapy plan. When I experience an episodic exacerbation I can spend 8+ hours a day managing my disability.

It also takes time to maintain a safe environment. It’s very important my home is clean (requires regular thorough cleaning) as exposure to dust, fumes and bacteria/mould increases my risk of lung infection and hospitalisation. For a person this is well this is a lot to manage. For me this is often impossible due to fatigue.

I’m a mother

I have three young children aged 3 to 7. I want to stay as well as possible for as long as possible so I can care/provide for them at least until they are 18. I strive to provide a good environment for them. I am very concerned that without access to NDIS my disability will increase more rapidly and severely jeopardise my ability to care for my children.

Since becoming a mother in 2013 I’ve struggled to stay on top of my disability due to the demands of parenting. Things deteriorated gradually over a few years before resulting in a long episodic exacerbation of 8 months where my function was severely impaired (my disability has permanently increased as a result) and I could not care for the children. At that time I accessed subsidised in-home child care with the Additional Child Care Subsidy (ACCS). To continue to access this I need to supply 2 letters of support from my Maternal and Child Health Nurse and medical team every 3 months stating that my children are at risk of serious non-intentional neglect due to my disability. Those are strong words and I think would deter many mothers with CF from applying for the ACCS. It was only because I was desperate and had no other options that I went down that path.

Standard childcare options (e.g. full days at day care centres) are not suitable for us. I need a few hours of childcare each day rather than 2 full days of care (because my therapies need to be done daily). It is important parents with CF have the option of in-home child care as busy day care centres can pose a risk when children regularly bring home respiratory viruses.

No extended family for support

Due to multiple reasons (death, illness, relocation interstate, birth of babies) we do not have extended family who can help out. Last year my partner, who acts as my carer when my disability is at its worst, was diagnosed with an autoimmune disease (Ankylosing spondalitis) and Autism spectrum disorder (he receives no support services). He was very unwell and unable to work for months and this placed immense strain on our family both financially and psychologically and I fell behind with therapies. During his flares I need to act as his carer, which puts huge strain on our family unit. At times it is extremely difficult and I find it hard to cope.

Financial hardship

Prior to having children (and when my disability was milder) I worked full-time and saved and hoped to put that towards a deposit for a home. Since having children in 2013 (and being out of paid work) I have drawn on savings to pay for CF-related costs (CF is costly) and to compensate for loss of income. My disability limits my ability to earn income; in my profession it is very rare to find part-time work and majority of work cannot be done from home. My partner is self-employed; when I’m unwell/in hospital he needs to take time off to manage the household and look after the children and that means no income. I put off physiotherapy and psychology sessions to make ends meet. I would like to access personal training but it is out of reach financially.

Since COVID-19 I can no longer use my local gym where I could access free support as part of my concession membership. It’s also increased our living expenses; my partner shops once a week whereas before COVID-19 I had opportunities to buy in bulk when things were on special and visit op-shops to keep our living costs down. I am concerned I will not be able to afford essential equipment to manage my disability without NDIS support. And I am extremely concerned about how we will manage financially the next time I am very unwell due to my disability.

I am becoming increasingly socially isolated

There are only 24 h in each day. By the time I do my my therapies, essential household chores, and childcare there is no time left. I’ve tried cutting back on sleep (CF makes me tired and I need more sleep) but that leads to lung infections. Fatigue makes it even more challenging – often by the time I’ve done my therapies and essential household chores (shopping, cooking, cleaning) even if I do have an hour to spare I’m just too tired to go out and socialise.

Over the past couple years, as the time I need to spend to manage my disability has increased, i’ve become increasingly socially isolated. This has been exacerbated by COVID-19. A few hours of domestic support a week would mean I could invest time to maintain friendships and take our children out for the day.

My partner works 6 days a week to compensate for his (and my) reduced function. On his day off we catch up on household chores or he does garden maintenance (I don’t do this due to risk of infection). Help with garden maintenance would allow us to take a day off once a month and take the family out for a day. We haven’t had a day off/family day for over a year. I feel bad that our children stay at home all the time. I worry about the impact of my disability on them.

NDIS support would allow me to be more independent

I would like to start paid part-time work to assist with the household income NDIS support would allow me to manage my disability and increase employment opportunities to be retrain or use my current skills. NDIS funded support would also help me manage my disability well so that I can minimise the rate of deterioration and take on more of the parenting tasks others take for granted.

There are no support services available to me without NDIS

I applied to the NDIS in 2018 and was rejected. I appealed the decision and again was rejected. Despite numerous calls I cannot access adequate support. I feel I have exhausted all options. The time required to call the agencies below, to attend meeting, to write this letter etc has meant missing essential CF therapies, which negatively affects my disability in the short and long term.

Support for People With Disabilities

Page 4

• Carers Link North. Phone calls and case worker meeting

  • When I was on HITH for 14 weeks early in 2018 Carers Link North provided support.
    • They initially provided a total of 12 cleaning (1h per week over 12 weeks), which helped enormously. When the case manager came to visit us she was very supportive and could see I needed support - she increased the cleaning to 3h per week for a few weeks until end of the financial year. However, Carers Link North were unable to provide assistance after 2018 as I do not have a Disability Support Pension.

• My Aged Care. Phone calls

  • My Aged Care said they could assist if I had evidence that I could not find support elsewhere. They told me to call the State Health Department. I called the department and was put through to another service who also said they couldn’t help me – I asked for a letter stating that so I could take it to My Aged Care and was told it wasn’t their policy to provide such letters. Dead end.

• Cystic Fibrosis Community Care Victoria. Phone calls

  • CFCC have been unable to identify any services that can support my situation.

• Banyule Council. Phone calls

  • On my first call to the council I was told they could not assist as I was under 65. I called a second time after advice from a disability government service that the council was obliged to help. I requested council send me a letter stating they could not assist so I could take to my local MP to highlight gap in services. The local council then sent out an assessor. I was granted 2h per fortnight of subsidised cleaning. This HACC service is ending this year (due to NDIS) and so I will not have access in a few months.

Recommend NDIS funded support recognise Cystic Fibrosis

I am honestly trying my very very best to manage my disability so that I can be a productive member of society. In addition to the physical effects of my disability (fatigue, shortness of breath etc) I have a substantial burden each day to mange my disability (essential time-consuming therapies, additional work to maintain dust, fume, and bacteria free home). And on the CF spectrum I’m considered “lucky” with “mild” impairment. I am well educated (tertiary education), I am resourceful, I am hardworking, and I am resilient but it’s not enough. I’m struggling and unable to manage my disability and responsibilities of parenting three young children without outside support.

Attachment A: My lived experience with Cystic Fibrosis.

With the current life expectancy of persons living with Cystic Fibrosis being a mere 37 years, early intervention and support combined with the current efforts of medical and drug support would have a major impact and more than likely increase that life expectancy.

Not only would an early intervention and support help increase the life expectancy of a person living with CF, those years would also be made much easier via CF being included on the NDIS.

I myself have been living with this disability for 32 and a half years. By that accord I am 87% through my life. Granted medical advancements have been increasing this my whole life, of which I have been part of countless studies and trials to benefit the greater CF community Australia (world) wide.

While medical advancements have been coming at a steady pace, other support has not. There are many many out-of-pocket expenses CF suffers (or parent/guardians of) must keep up with week in week out. This may range from transport costs to and from major hospitals for clinic visits, medication collections, or other needs to medical equipment needed in home to help us live our lives as normal as possible, to keep us fit and healthy, and allow us to be part of our community and give back where we can.

Access to the NDIS support and services would make managing living with CF just that little bit easier for all. Access to the NDIS would assist in slowing down the rapid decline for newly diagnosed CF sufferers along decreasing the mental stress on parents/guardians of new diagnoses due to having that extra bit of support and access to services.

Access to the NDIS may very well be a step that turns around someone living with CF’s life,

Having that extra assistance could make the world of difference to each-and-every individual living with CF.

Thank you.

Submission

27 June 2020

Joint Standing Committee on the National Disability Insurance Scheme Access to NDIS PO Box 6100, Parliament House Canberra ACT 2600 E: ndis.sen@aph.gov.au

Submission:

I like to request for Cystic Fibrosis to be included on the list of NDIS eligible disabilities.

People with Cystic Fibrosis have a chronic health condition which seriously affects everyday life. It takes 40hrs per week to maintain our health when all things go well.

HYGIENE

We require extra hygiene due to our susceptible lungs, but should not be exposed to mould and dust, a catch 22 as when you are cleaning you are existing yourself to it. With our reduced lung volume chores like cleaning and gardening easily take twice as long as well as the activities themselves expose us to increased infection risk.

OXYGEN REQUIREMENTS and NEBULISERS

Sleeping with impaired lungs is similar to sleep apnoea where we wake up tired due to poor oxygenation. At times we have to use supplemental oxygen from a concentrator, not subsidised or paid for by any insurance, and we need at least an extra hour or more sleep and even during the day with reduced oxygen, we have trouble focusing or concentrating on tasks which makes seemingly simple chores difficult. We have difficulties breathing, leaving us breathless with simple chores like showering and tying shoelaces, getting in and out of cars etc, and making beds makes us cough phlegm onto clean sheets.

We nebulise for many hours each day to keep our lungs clear from phlegm and take lots of medicine to keep us breathing. Antibiotics no longer help us much, they cause side-effects such as deafness for instance, yet we are hospitalised several times a year for weeks at a time to pump us full of antibiotics and try to do everything to help us breathe and stop coughing blood. My home nebuliser and it’s accessories and consumables are often supplied by the CF association, but the expensive travel nebulisers I have to buy

We need to do an hour of aerobic exercise, which for us is limited to gentle walking on flat terrain, with frequent stops for coughing fits.

Holidays are problematic because we can’t stay in cheap dirty and dusty environments and we must avoid crowds. Hence we book more expensive holidays and then we also need Oxygen concentrators to fly, which cost thousands to buy and if renting add

Nutrition

We have increased nutritional requirements as our digestion is impaired for which we take dozen of pills with food. Good healthy food is expensive and difficult to make just because it leaves us breathless. If you are lucky enough to have a Thermomix you can make a lot yourself. Cooking is difficult for us, eating out an unaffordable luxury. Another example is with the CF-related diabetes requiring me to have muesli bars and other emergency foods in my pockets at all times for when I get hypos.

I’m tired during the day and have to drink at least half a dozen strong coffees which I can only afford with coffee beans and the use of a second-hand automatic coffee machine. I have killed manual coffee makers and wasted a lot of coffee due to lack of concentration in the morning…

Attachment A: My Lived Experience with Cystic Fibrosis

My 17 year old son was diagnosed with CF at 7 weeks of age. This diagnosis was in some ways like a death - a death of hopes and dreams my husband and I had for him. We have always focused on keeping our son as healthy as possible each day so that one day when a ‘miracle cure’ was available he would be able to take advantage of it.

Our concerns for our son as he is in his final year of high school are that he will not be able to participate in the workforce as fully as his peers and that he will have to spend more of his income on medications than his peers.

On average he has had a hospital stay for every year of his life - some only over night and some for more than 3 weeks.

The cost of medication could also be prohibitive for him as he reaches adulthood. Fitness is very important for a person with CF, and if our son is only able to work part-time, this makes the cost of a gym membership even more out of reach.

In short, CF is a ‘hidden’ condition. A person with CF looks like any other member of our community, but there are hours of treatment each week and up to 20 tablets per day that go into maintaining their health.

Life With Cystic Fibrosis

My daughter is 11 years old, she is in grade 6, and lives with Cystic Fibrosis, a lifelong condition causing lung infections and cough. Due to the severity of her illness she has shortness of breath on mild exertion and even at rest her breathing is laboured. Cystic fibrosis has caused to have chronic lung infections resulting in a permanent disabling low lung function. Walking is possible for her but it leaves her panting and short of breath, she cannot run with her friends or join in sports at school. works hard to stop further decline of her lung function, and maintain her current abilities. To be able to maintain her current level of abilities, must do three 30 minute sessions of physiotherapy every day. Cystic fibrosis is responsible for having severe high frequency hearing loss (she is partially deaf). Her condition causes her to need approximately 30 oral medications daily.

works hard to maintain her condition and would like to continue attending school whenever she is able for as long as possible, and continue to participate in life to her best ability. It would be easier for us to care for if we could easily access NDIS.

Nebulisers and their accessories are vital equipment for many Cystic Fibrosis sufferers. uses a Nebuliser twice daily at home to administer medications and perform chest physio. This is done to clear mucus from her lungs and maintain her current level of health and help keep her out of the hospital system. is on her third Nebulising machine. It would be helpful if NDIS could fund some costs associated with purchasing Nebulisers and their accessories, which must be replaced periodically.

often uses a Bi-PAP machine at home, during her physio sessions to clear chest secretions. The one she uses is on loan. I would like NDIS funding to buy our own Bi-PAP machine.

spends months at a time as a hospital inpatient, having medications to combat lung infections. Whilst in hospital she receives care from many specialist cystic fibrosis health care workers, including professional physiotherapists. But it is the aim of the hospital system to discharge their patients. Once discharged from hospital, we are left on our own to maintain her condition, isn’t cured of Cystic Fibrosis, and lives constantly with disabilities. That is where we encounter a huge gap in support, inside the hospital system we get help, outside there is no help. Cystic fibrosis should be on the NDIS list of conditions which are likely to meet disability requirements.

At home the burden to maintain current level of abilities, including 90 minutes of daily physiotherapy, is left up to our family. We have to provide care and do physiotherapy sessions ourselves. We have to buy machines, equipment and accessories. I believe should be eligible for NDIS funding to help pay for costs associated with physiotherapy sessions, and necessary in home equipment, nebuliser and Bi-PAP machines, and the accessories which go with these machines which need to be cleaned daily and replaced often.

The exertion of walking short distances can make so short of breath she needs to sit down and rest. also experiences episodes where she comes close to fainting, she needs to immediately sit down, before she falls down. Sitting might be on a shop floor, at school, on the footpath, anywhere she may be she collapses to the ground before she faints. also has issues with sudden waves of nausea, fevers, vomiting, and generally feeling unwell, this makes our lives unpredictable, and was often house bound, due to her disabilities.

• The wheelchair has made it easier for her to get out of the house, she can still participate in everyday activities even when she is having a bad day. It would be good if we could apply to NDIS to be able to buy her own wheelchair.

I enquired about applying for NDIS in Feb.2020. I spoke to lady in the NDIA, who said that ‘Cystic Fibrosis is not considered a disability, and was unlikely to get NDIS funding’. When I said “she cannot run 20 meters to the letterbox without collapsing panting afterwards”, the NDIA worker told me, “as long as she was capable of walking to the letterbox, she wouldn’t be considered disabled”. On a good day she is capable of walking slowly, but on her bad days she cannot walk for 20 metres without support, the wheelchair has been very helpful during her bad days.

When I found that Cystic fibrosis isn’t considered a disability in the NDIS system, I was surprised. It can be a very disabling. Cystic fibrosis should be on the NDIS list of conditions which are likely to meet disability requirements.

I intended go through the NDIS application process, but I have to spend hours each day caring for my daughter. I am a single mother and I also try to fit in paid work. She has been hospitalised for 80 % of the last five months. During that time I was supposed to be gathering evidence for our NDIS claim. It all seemed too hard and the timeframe for NDIS application lapsed. I feel it is wrong that cystic fibrosis is not automatically on the list of Disabilities covered by NDIS. My daughter is disabled from a chronic condition caused by Cystic fibrosis.

Cystic Fibrosis is a genetic condition which often results in a permanent physical impairments.

Accessing NDIS support would help our family manage her disabilities caused by cystic fibrosis, and delay admissions into the hospital system. It could help she experience many more good days, so can spend more time at school, and participate in life to the best of her abilities.

Attachment A: My lived experience with Cystic Fibrosis.

Our beautiful second born son was diagnosed with Cystic Fibrosis (CF) at 5 weeks old through the heal prick test. This world of dealing with everything CF present challengers that were new to our family as there was no history.

As our son wasn’t putting on weight from day 1, this raised a red flag with us and medical staff. We eventually were informed that his pancreases wasn’t working (which is also a result of his CF) as intended as to the reason for no substantial weight gain.

I was planning to return to work after maternity leave working the same days that I departed on. The issues with this was that given the requirements that are needed to implement to ensure our baby stayed as health as could be and administer enzymes for all food including formula, someone had to make sacrifices and changes to ensure this occurred.

This environment is ever changing and challengers always arise. We are currently trying to work with our son to swallow capsules that us adults sometime struggle with and do physio know as bubble pep to blow bubbles from 10 minutes (his daily physio). I don’t know about you but 10 minutes is a long time (for a child) given there is so much for a little boy whom wants/needs to experience generally without anything extra associated with CF.

Our son also has a speech delay however we were scared to send him to child care in a hope this improves his speech as we also want to prevent an acceleration of decline with the battle of CF as we don’t like germs and bacteria (stuff you can not see) as he maybe become sicker which could mean a 2 week stay in hospital.

With all the requirements that CF present and the challengers our son is dealing with now and in the future, we are wanting to make his life a little easier that he will not have to worry between food and financial help due to his CF disability.

What we need is for people to understand (as knowledge is power) that CF is a disability and people living with Cystic Fibrosis (CF) are eligible for NDIS funded support is a fantastic step forward.

Attachment A: My lived experience with Cystic Fibrosis.

My son was officially diagnosed with CF, three weeks after his birth however a verbal diagnosis was given on day 2 of his life. He was rushed to the Royal Children’s Hospital (RCH), the day after he was born with Meconium Illius. We spent 3 months in hospital, putting enormous financial strain on my husband and I at the time (meals, parking, mortgage, using all annual and sick leave).

Since his diagnosis we have spent approximately 12 months in hospital to date. This includes admissions, clinics, tests, emergencies and his issues at birth. He is now 14 years old.

Due to the extensive amount of admissions using IV picc lines, his veins have splintered and we have no option to access his arms for treatment. We only have chest tunnels and a port to consider. To have a chest line put in, he must go under a general anaesthetic each time. He’s a very active, social teenager who loves to surf and play contact sports, so a port is not a great option. These activities also help clear his chest and keep him out of hospital. Due to requiring a general anaesthesia and central line, we are required to stay in hospital for longer periods as opposed to being discharged on HITH with a mid or picc line.

Day to day treatments are intense. He has multiple nebulisers, large amounts of oral medication, puffers and preventers on top of his chest clearance exercises. This is burdensome on not only him, but the entire family. We all live with CF, it’s not a singular issue. His brothers wait constantly for us to administer drugs, help with physio and chase him to take with vitamins, antibiotics and lung steroids.

Socially, he feels excluded because the community is kept apart, and his peers use Google to educate themselves on CF. As a result, he is continually reminded that he’s not going to live a long and fruitful life and feels like the only person on Earth with this illness. I know the prognosis is changing but the general population doesn’t. He is constantly reminded of his disability with children and adults asking why he’s small, why he takes medication and why is he always coughing. Typically, these psychological issues are dealt with by our immediate family through discussions and reassurance, however I do feel he needs support from a clinical psychologist. The RCH has recommended he see a psychologist, however coordinating this on top of everything else, as well as dealing with the cost, is something we have decided to postpone.

It is difficult for me to work fulltime. I am a highly qualified professional who would happily work and pay taxes, but to keep up with clinics, lung strengthening and clearance activities as well as missed schoolwork, this becomes difficult. Furthermore, the cost of equipment (nebulisers, medications and alternative treatments such as massage) and such activities (swimming, weights, surfing) are expensive. I am concerned with his opportunities moving forward. It’s unlikely he’ll maintain fulltime work due to physical exhausting and an intense health regime.

It’s relentless, it’s exhausting, it’s slowly getting worse for him. Additionally, this is a family disease. All my boys have spent Christmas, New Year’s Eve, birthday’s and school holidays in the RCH. We all have admissions when he is admitted, and we all live with CF. The cost of maintaining children inside a hospital and outside a hospital is extensive. Meals are grabbed on the go, food is sent to multiple houses who are caring for his siblings and guilt invades my husband and my souls as we deposit healthy and unhealthy children all over metropolitan Melbourne. The cost of using toll roads through Melbourne, paying for parking at the hospital, paying for additional meds on discharge is expensive. It’s very difficult to do all of this, be a fulltime carer, maintain a career and raise successful and kind children for our country. Please support the CF community who largely maintain this disease on their own.

Attachment A: My lived experience with Cystic Fibrosis.

Having Cystic Fibrosis impacts my life every day. It impacts my ability to fully participate in the workspace because I can’t get there safely via public transport because there are too many dangerous germs on there which may cause a lung infection, and it’s too expensive to park my car in the city every day. This would be changed if I had funding to park close to work as I could stay germ-free while also participating fully at work, like everyone else has the chance to do.

CF affects my ability to live a normal life. I cannot do the things my friends and family do due to increased risk of getting an infection. I need to spend hours every day doing my chest physio and having nebulised treatment to avoid getting sick. This is very time consuming and leaves me exhausted afterwards, which impacts my ability to complete housework and enjoy time with my family.

I spend a high proportion of my income on food due to my high nutritional needs, which means I don’t have as much money to go towards other necessities.

Accessing NDIS funded supports would help me participate in the workplace and community more. For example, if I had help with funding of my nebulisers/treatments/physio I would be able to afford to buy exercise equipment, which would help my lung function and keep me out of hospital.

If I had funding to drive to work, I’d be able to actually go to work instead of work from home which is isolating and bad for my mental health. I would be a happier and more productive member of society.

Attachment A: My lived experience with Cystic Fibrosis.

I am a 31 year-old woman with Cystic Fibrosis and I underwent double lung transplant surgery in 2017.

My understanding of the NDIS is that it strives to respond to the individual requirements of those living with disabilities. The nature of CF is that it is both progressive and fluctuating in the impairment it causes to those living with it, and I believe the NDIS can and must be flexible enough to respond to this.

During the years preceding my transplant (what is often known as ‘end-stage” Cystic Fibrosis) I could have benefited enormously from supports and services such as those the NDIS could provide. During these years I was completing a Master’s degree in high school teaching and subsequently entering the workforce. However, due to ongoing intermittent ‘flare-ups’ in my condition I was never able to commit to a full-time position in a school and had to rely on the inconsistent and insecure income I received from casual teaching. I was frequently admitted to hospital for weeks at a time, and upon discharge would usually be immediately able to return to casual work. I was frequently too exhausted to care for myself and often had to rely heavily on the support of my family, particularly my parents, both practically and financially. During this stage of my condition I would have benefitted from assistance in my home particularly with cleaning (which can expose me to moulds which can cause serious respiratory infections, and potentially lead to permanent reduction in lung function). This would also have freed up some of the precious little time and energy I had left outside of work and hours of daily treatments, allowing me to possibly accept more casual days of teaching in schools, and increasing my financial independence. There are huge financial impacts on those with CF, due to the additional products and services they must spend money on in order to stay well, along with their decreased capacity for work during times of acute illness. The provision of a health care card for reduced prices on essential medicines, as well as the provision of other supports and services through the NDIS would be invaluable to the health and wellbeing of those with CF and their families and carers.

As exercise for physiotherapy is a crucial element of treatment and vital to staying well with CF, I would also have benefited hugely from assistance in this area, such as a personal trainer or exercise equipment for my home. Considering the difficulties associated with attending a gym or similar (though this is fine for some, I was particularly struggling with motivation due to mental health, and was self-conscious about my constant, very persistent coughing) the assistance of a specialised trainer and/or equipment to use at home would have been invaluable. I was also critically underweight at times and had to buy expensive specialised dietary supplements to increase my calorie intake and help me maintain my weight. During this time I also suffered from severe back pain, due to broken ribs and muscular issues from excessive coughing, and the support of physiotherapy or chiropractic treatments could have been a huge relief.

I, like many others with CF, have also developed CF related diabetes, and have osteoporosis and some lingering muscular-skeletal issues due to the impacts of CF. As a person with CF post- transplant, I could benefit from interventions such as assistance with cleaning to avoid dangerous mould spores which can colonise and damage transplanted lungs. This would ensure greater protection for the transplanted organs I have received and hopefully increase their longevity. I would also benefit from specialised physiotherapy/chiropractic treatments to deal with ongoing back pain.

If assistance with cleaning, cooking, transport and other basic domestic needs could be provided

to people with CF before the acceleration of their disease, they would certainly be able to

participate more fully in their own education and work opportunities, as well as contribute more

to their communities. The provision of things like specialised equipment (such as nebulisers and

other devices, supplements and so on), exercise equipment, personal training, physiotherapy and

dietetics could substantially improve health outcomes in people with CF, improving the quality and

length of their lives.

Finally, specialised psychological support is vital for people with CF both before and after transplant surgery. The devastating impacts of this disease cannot be overstated, and any assistance in coping with these challenges would be beneficial. This cannot be overlooked as a necessary part of the holistic care for people with CF. The addition of psychological services as well as other supports would have a flow-on effect for the many family members and friends who assist in the support and care of loved ones with CF, lifting some of their burden in both a practical and emotional sense.

The far-reaching impact of the interruptions caused by CF to all facets of life could be mitigated to some extent through personally tailored services and supports provided by the NDIS. These could function as an early intervention allowing people with CF to dedicate the necessary time and money required to maintain their health and continue to study or work in order to achieve their goals and participate in the workforce and the wider community. Some of these supports and services could provide very real improvements to both health outcomes and quality of life for those living with CF. People living with this disease are determined and resilient, and have much to give back to their communities, within their relationships and their careers. With the right support and provision of services, they can go beyond just surviving and flourish.

Attachment A: My lived experience with Cystic Fibrosis.

I have a personal interest in NDIS becoming available to people living with Cystic Fibrosis. I am a mother of a 5 year old child who suffers from Cystic Fibrosis, a genetic disorder, which was diagnosed through the heal prick test. In his 5 short years of life, he has had over 10 general anaesthetics 4 hospital admissions. It breaks my heart seeing him with pipes coming out of his little body, forcing drugs upon him, seeing him in pain… The bacteria in his lungs seem to be getting stronger, despite the fact he’s a very compliant 5 year old and has not missed any of his treatments, not for his birthday, not for Christmas… He seems to be requiring more and more medication, more antibiotics, which naturally comes with severe side effects.

I am not sure people who read this submission have any idea what it is like living with cystic fibrosis. CF may seem invisible but it does affect our everyday lives. It’s a blessing and a curse at the same time as people can’t even begin to imagine what life with CF is like: the hours of treatments of Cystic Fibrosis are tedious and time consuming – and nerve wracking as a helpless mother who can do nothing more than to sit and watch… CF does affect our life in every aspect, particularly in the current climate with the lurking threat of Covid-19. My son is not attending kinder, is not seeing his extended family members and has to work twice as hard to remain healthy with additional treatments and medications required to keep him stable.

My son is severely restricted in his ability to participate in society due to his inability to do certain things as he gets easily fatigued and must avoid infection risks. Every viral infection comes at a risk of causing secondary bacterial infections, which in turn leads to the inevitable hospital admission. Anxiety and behavioural issues are manifested at his young age already and with proper management and NDIS funded supports and services, would be able to reduce the impact his disability has and prevent and/ or delay long term damage.

When other parent’s morning routine consists of feeding, dressing and brushing their child’s teeth, our day starts with pushing our strong willed 5 year old to do his CF treatments, i.e. nebs and physio before we even start thinking about breakfast, which comes along with a cocktail of tablets. Unfortunately, the drugs currently available are no cure and can only slow down the inevitable decline in health.

I don’t understand how NDIS acknowledges that Cystic Fibrosis is a disability and since October has made equipment, which is required in the management of CF, available under NDIS, yet, hardly anyone with CF seems to qualify for NDIS support? As with so many other illnesses and disabilities, prevention is so much better than treatment! As a parent of a disabled child, who is restricted and disadvantaged in so many ways, the strain on our every day lives, finances as well as mental health is enormous. Naturally a disability like Cystic Fibrosis affects other areas, especially in young children. Behaviours, mental health, all areas that could potentially lead to developmental delays and be managed so much better under a NDIS plan. Early intervention would make it so much easier to manage CF and prevent accelerated decline.

Supports and services available on a NDIS plan could give us practical assistance and access to products that

would help us manage his disability on a daily basis and thus lead a more fulfilling life.

Prevention and delaying deterioration of my son’s health in return mean less need of medication and a

better outlook on my son’s quality of life. If my son grows up healthy, he will be able to contribute to

society, get a job, pay taxes and not be a burden to the health system, isn’t that a no brainer?!

People living with Cystic Fibrosis need long-term support; they’re not getting better. They have a

permanent and significant disability affecting their ability to take part in everyday activities. Their condition

is only ever getting worse with time but with proper management and NDIS support, decline could be

slowed and provide people living with CF with the opportunity to lead a more fulfilling life.

I encourage the Joint standing committee make much needed changes to the NDIS to ensure people with

Cystic Fibrosis can access funding and support services via the NDIS and stop falling through the cracks.

Attachment A: My lived experience with Cystic Fibrosis.

I am a woman in my mid 30s and am pre-transplant. For most of my life I have lived with and around CF pretty well. In the last 3 years or so my lungs and pancreas have declined at a gently accelerating pace.

In 2017 at the suggestion of a CF physio, I reintroduced percussive physiotherapy into my repertoire of airway clearance techniques. This has helped me clear my very sticky (even by CF standards) mucous; I cannot shift enough gunk without it. But it involves a second person doing the percussion. This person is usually my partner and occasionally a parent.

The time and energy spent doing something stressful, boring and life consuming instead of, well, anything else together, almost broke us. From 2018 through 2019 I no longer liked or loved my partner, I just felt stuck and dependent on him for physio. Our sessions kept getting longer for lower and lower returns while my lung function kept dropping. My pain increased, my ability to work shrank as I started getting every office virus and they turned into exacerbations.

As my health and ability to contribute to the household declined, the cost of keeping me sort-of-ticking increased. I don’t know if my decline would have been slower if I’d had access to NDIS support, but I know how I would use it now, and what I would offer to my younger self to delay and better prepare me for the inevitable CF decline.

If I had confidence that I could access support through the NDIS I would be willing to branch out into more rewarding but less reliably profitable work. I am a public servant and an office job is without doubt the worst thing I have ever done for my health. I would like to work in the fitness industry.

Currently at my own expense I hire cleaners to help me keep the house to a high hygienic standard when I haven’t the time or energy. I would like to get massage therapy weekly but instead do it monthly because I cannot afford more. I am about to buy a physio vest (Afflovest) for $13,000 AUD (I wish this was a house deposit), and my PEP device needs replacing. My partner and I both see psychologists separately and a couple psych together to navigate the shifting sands of CF, this costs us about $400/month.

Access to NIDS support would mean so much. Confidence that I can care for my health and not perversely burn it out trying to keep enough dollars coming in to maintain it.