CONQUERING NF
15th February 2024
Submission for the Joint Standing Committee for the NDIS participant experience in rural, regional and remote Australia.
The Children’s Tumour Foundation (CTF) is the only support organisation for the 13,000 people living with Neurofibromatosis (NF) in Australia. NF refers to a group of complex genetic conditions that cause tumours to form on nerves, under the skin and deep within the body. It is lifelong, complex and requires multi-disciplinary care.
NF can lead to a range of significant health issues including blindness, deafness, bone
abnormalities, disfigurement, chronic pain, learning difficulties and cancer. NF is
unpredictable, progressive and there is no cure. Beyond the often-debilitating physical effects of the condition, NF also affects cognition and behaviour, and can have a significant impact on a person’s social and emotional wellbeing. This has the potential to lead to increased risk of suicide and mental health conditions. Up to 75% of people with NF have a dual diagnosis of ASD and or ADHD, which further complicate an already complex diagnosis.
The CTF Support Services Team provides information, resources and advocacy for people living with NF throughout Australia. Over the last five years we have tried our best to become well versed in the NDIS and have assisted over 100 of our clients with applications to access the program. We have found this task increasingly difficult in recent times, particularly for our clients in rural, regional and remote areas. We have observed challenges and disparities that individuals encounter when trying to access essential NDIS services. As a result, we have deep concerns and are becoming increasingly frustrated as more and more of our clients with significant disabilities have been refused access to the NDIS.
We have advocated directly with the NDIA and were appreciative of the opportunity to raise our concerns. Nevertheless, the responses we received were unsatisfactory and did not recognise the level of disability and daily struggles encountered by our clients.
We would like to address each of the Terms of Reference:
a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews;
As stated above, we have provided support for many clients with the NDIS application process. We have not been intimately involved in the plan design, implementation, or review
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phases, but have provided a sounding board and some advice to our clients as they negotiate this process with their Local Area Coordinators (LAC). Our role has primarily been to inform and educate the staff of the NDIA and NDIS providers about Neurofibromatosis. Awareness and understanding of NF remains generally poor among Australian Health Professionals so we have collaborated with the NDIA in the past to develop an NF Fact Sheet for the NDIA Assessors and Planners. We write comprehensive support letters outlining the impacts of NF and summarise the recommendations of the client’s health team. Following meetings with the NDIA we also ensure that our clients (or carers) write an Impact Statement to submit alongside their application.
Numerous times we have had clients denied access to the NDIA as their condition is erroneously deemed to be “not permanent”. This is particularly frustrating as all applications clearly outline that the condition is permanent, lifelong and progressive. Others have had their applications rejected as “The available evidence confirms that you have Neurofibromatosis Type
- However, this evidence does not indicate that all available and appropriate treatment options that are likely to relieve or cure your impairment have been explored. These treatment options must be explored before this requirement can be met.”
Responses like this are particularly galling to our clients as it indicates that the Assessors did not adequately read the application and supporting evidence.
Quite simply, there is no cure for NF and treatment options are extremely limited. There are some drug trials underway, and surgery is often too dangerous or ineffective and requires multiple revisions. Research shows that early intervention for the physical and cognitive impacts of NF are very beneficial1,2. Most children with NF are requesting access to allied health services – speech pathology for expressive and receptive disorders, occupational therapy for fine motor and executive functioning difficulties and physiotherapy for poor balance and coordination and low muscle tone. Our adults often request assistance as they are struggling to perform their ADLS and cope with pain, muscle weakness, fatigue and associated anxiety and depression. However, the NDIS has disputed many of these applications stating that they accept that there is a level of disability, but it is not “significantly reduced functional capacity”. We find this is a subjective concept that is applied arbitrarily and inconsistently much to the detriment of our clients.
Clients who have not been successful in gaining access to the NDIS receive rejection letters suggesting that they contact their “LAC to consider and access other supports and services in your community”. In our experience, those living in rural or regional areas have no alternative but to join lengthy (often 2 years+) waiting list for basic allied health services. Most cannot afford to pay for these services privately, and we have heard of many professionals now charging NDIS rates to people who do not have NDIS Plans. This is extortionate and cost prohibitive. Consequently, children living with NF are not receiving essential early intervention services and are falling further and further behind academically and socially.
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Early intervention options can also be problematic as NF is often misdiagnosed or not picked up by health professionals, which means the opportunity for early intervention is often completely missed. We are aware of a growing cohort of children that have missed out on early intervention, but who desperately need allied health services.
b. the availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants;
Overall, we have found there to be great inconsistency in the approval process of the NDIS for our clients. Some clients have been granted access with no issues, while other similar clients have been rejected multiple times. One client, a mother of a seven-year-old boy lamented
“One of biggest impacts is actually the emotional toll it took on me. Aside from the effort that went into applying, it’s the letters that I received which were kind of meaningless, unspecific and, although I’m sure without intention, resulted in me feeling kind of crap as a parent. I got a phone call from NDIS as a result of complaining to my local MP, however it honestly didn’t provide me with any clarity as in my opinion the evidence was conclusive”.
Another parent of a 10 year old with NF was admitted to her local emergency department due to the stress and strain the application process and consequent rejections had had on her health. After several appeals and resubmissions she was eventually given access to much-needed services, but it had come at a great personal cost to her and lengthy delays in intervention for her daughter.
We know of several families that have moved from rural to metropolitan regions in order to access services for their child with NF. A family in remote Queensland reneged on an employment contract and returned to Brisbane after their son was diagnosed with NF. The mother stated that the town had no allied health services, a visiting GP and pharmacist and the travel to metropolitan areas was unmanageable. A father of a 6 year old told us that they paid over $700 out of pocket in one week for allied health services and another had to leave his job as the family could not juggle the medical and therapeutic appointments for their children. These scenarios are unsustainable and most of our clients to do not have the capacity to absorb such costs or sacrifice an income.
c. participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services;
As stated above, we have little input in the engagement of services once a client has an NDIS Plan in place. However, we have anecdotal evidence from our clients not having a choice of provider as there is usually limited availability of support services in rural and regional areas.
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Many individuals from our NF Community have experienced significant challenges in finding suitable providers for various support needs, ranging from therapy and equipment provision to personal care assistance. This scarcity often results in long wait times, inadequate service options, and often a complete lack of support altogether.
An adult female client was rejected by the NDIS as they required additional details before resubmitting the application. They requested that she obtain an Occupational Therapy Assessment and provide them with a report on her functional capacity. One of the quotes
was $1332.05. This client is living on a DSP (due to her proven inability to sustain
employment) and is still without NDIS support. Even if she could find the money to pay for an assessment, the waiting list in her area is approximately ten months. These additional hurdles cause further delays in legitimate people being able to access appropriate and much needed services.
d. the particular experience of Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio-economic backgrounds, with the NDIS;
It is our experience that our NF clients have extreme difficulty with the NDIS application process. The complex paperwork, inconsistent communication, and lengthy assessment processes create unnecessary barriers for individuals seeking support. Half of our adults or parents have a diagnosis of NF themselves and associated learning problems. Many have told us that they have opened the Request Access Form (after a long day coping with children with disability) to only close the computer and give up as “it’s just too hard”. For people with disabilities in rural and regional areas who may already face geographical isolation and limited resources, navigating these administrative hurdles is particularly daunting and exhausting. In an attempt to counteract some of these issues, we have developed some template material our clients and their GPs can use to provide relevant information on the forms.
An Aboriginal mother (who has NF herself and lives with the burden of complex tumours and her own pain and cognitive issues) applied for NDIS support but was rejected. Her son is 11 years old and ha s severe behavioural issues, along with other complex medical issues. She had worked with a specialist LAC (Aboriginal Stakeholder Engagement Project Officer) on her application, so the information contained within was comprehensive and accurate. However, the rejection letter again stated:
“The available evidence confirms that (child) has NF. However, this evidence does not indicate that all available and appropriate treatment options that are likely to relieve or cure the impairment have been explored.”
She will request an internal review, but in our experience the original decision is likely to remain unchanged, which will probably lead to an AAT review. All of which itself is a costly
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burden on the system and results in significant delays in providing this child with much needed support. This family lives in a regional community and is unable to access support at school due to the services only being offered to children under the age of 7 years of age.
e. any other related matters. It is evident that rural and regional areas receive disproportionately less funding, which directly impacts the quality and availability of services. This inequity perpetuates the marginalisation of our clients with disabilities in these communities and denies them the opportunity to live fulfilling and independent lives.
We are deeply concerned about the well-being and inclusion of individuals with NF and we would like to see the following changes implemented:
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Increase funding allocations for disability support services in rural and regional areas to ensure equitable access to quality care and support. The provision of increased funding will enable more rural and regional services to be established to cater for these populations.
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Streamline the bureaucratic processes associated with the NDIS to reduce administrative burdens on individuals and their families. Clients find the application process and yearly review requirements to be costly, arduous and time consuming.
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Better collaboration with local stakeholders, including disability advocacy groups and service providers. The development of targeted and tailored solutions that address the challenges of accessing the NDIS would greatly improve the wellbeing and independence of individuals with NF living in rural and regional Australia.
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Clear guidance on how and where people can access basic services if their disability is deemed to be not severe enough to be able to access NDIS services.
None of the clients we have ever worked with has tried to rort or take advantage of the system. They are vulnerable community members who are seeking to access basic supports that will enable themselves or their child to significantly improve their functional capacity and independence. We firmly believe that providing basic allied health services and interventions at any age will help the NF community to thrive rather than just survive.
On the NDIS website it states “The NDIS provides funding to eligible people with disability to gain more time with family and friends, greater independence, access to new skills, jobs, or volunteering in their community, and an improved quality of life. The NDIS also connects anyone with disability to services in their community.”
That is all we and the NF community we work alongside are asking for, not more, not less.
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Thank you for your attention to this matter. We look forward to seeing meaningful progress and resolution of systemic inequities to create a more inclusive and accessible NDIS for everyone.
Yours sincerely,
Ruth Lindsay Meredith Fannelli
Ruth Lindsay Meredith Fannelli
Head of Support Support Coordinator
CTF CTF
References
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Rosser, T., Packer, T., & Flores, A. (2018). Physiotherapy interventions for children with neurofibromatosis type 1: a systematic review. Developmental Medicine & Child Neurology, 60(1), 16-23.
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Garg, S., Mandal, A., Dhar, S., & Basu, A. (2020). Efficacy of balance intervention programme on balance, mobility and functional performance in children with neurofibromatosis type 1: a randomized controlled trial. Child: Care, Health and Development, 46(4), 563-572.
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