28th of September 2020
Submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) regarding the implementation and performance of the NDIS for people with a disorder of the corpus callosum.
A disorder of the corpus callosum (DCC) is a congenital neurological anomaly classified by the atypical development of the corpus callosum. Comprised of around 200 million nerve fibres that connect the left and right hemispheres of the brain, the typical corpus callosum is involved in the coordination of cognitive, sensory and motor information. For approximately 1 in 3000 people, this structure does not develop at all, or grows in an unexpected way; thicker, thinner, a different shape or with partial absence. If a person is born with a DCC, the corpus callosum will not later develop, and there is no treatment to correct the anomaly.
People with a DCC have a variety of strengths, abilities and challenges. A DCC may be a person’s only or main congenital anomaly, but it can also present with other anomalies or as part of a syndrome. There are many known genetic causes for DCCs and some environmental causes, that can help explain some differences among people, but often a cause won’t be found. For many people, a DCC is their primary diagnosis or condition that they have to explain and understand their disabilities, even if they are subsequently diagnosed with other health challenges or disabilities as they age.
People with a DCC who seek support under the NDIS have a permanent disability that is attributable to neurological impairment and can result in substantially reduced functional capacity, thereby meeting the NDIS access requirements.[1] The NDIS provides people with a DCC with the reasonable and necessary supports they need to live an ordinary life.[2]
AusDoCC[3] is a national grassroots charity, founded in 2012 to support people affected by a DCC and their families through addressing the lack of recognition, knowledge and services and the reduction of the isolation felt by people with a DCC. As a rare and invisible anomaly, people with a DCC and their families often face many hurdles in accessing support and being understood. We, representatives of AusDoCC, offer this submission into the implementation and performance of the NDIS with some key recommendations.
Our key recommendations for the committee are provided on the next page, followed by an explanation of these key recommendations.
[1] https://www.ndis.gov.au/about-us/operational-guidelines/access-ndis-operational-guideline/access-ndis-disability-requirements [2] https://www.ndis.gov.au/about-us/operational-guidelines/overview-ndis-operational-guideline/overview-ndis-operational-guideline-about-ndis#4.3 [3] www.ausdocc.org.au
Key recommendations
The committee should acknowledge:
- People with a rare and invisible disability, such as a disorder of the corpus callosum, have greater difficulties with accessing reasonable and necessary supports under the NDIS,
- A strength of the implementation and performance has been the choice and control of participants,
- People with a disability deserve the right to choose who completes any assessments or reports and maintains the right to this personal documentation,
- Independent assessments with unknown providers will further the difficulties with accessing reasonable and necessary supports under the NDIS,
The committee should make recommendations to:
- Cease the roll-out of compulsory independent assessments,
- Engage participants and disability advocacy organisations in any further considerations about independent assessments or financial sustainability.
General implementation and performance of the NDIS
Feedback and discussion among our DCC have brought to light many strengths and challenges within the implementation and performance of the NDIS.
The strengths:
- When it goes well, it goes great. For many people within the community, the NDIS has been their first comprehensive support received or has enhanced their ability to access supports that are reasonable and necessary. Prior to the NDIS, supports were fragmented and often built around particular diagnoses and tick boxes of which DCCs did not ‘fit’ into well.
- Access to ongoing support with a choice of provider/s. As DCCs are rare, there is inconsistent knowledge among different service providers. Many providers have no knowledge of DCCs, and how to support a person with the anomaly, this leads to uninformed opinions. As NDIS funding is managed by the participant, through choice and control, they can seek providers who have the expertise in DCCs or make the commitment to learn. They can establish long term therapeutic relationships with trusted providers who can gain a thorough, informed view of their strengths, abilities and challenges.
- Reviews and planning are guided by provider reports. In keeping with the response above, reports by ongoing providers are likely to be comprehensive and individualised, and goals and needs are co-constructed with the participant over a period of time.
The challenges:
- Some individuals have had difficulty with having their DCC recognised for their access to the scheme, particularly when they apply as an adolescent or adult. The assumption, at times, is that the person has managed without supports and services; therefore, their needs do not warrant support under the NDIS. This assumption is flawed for several reasons;
- The neuropsychological syndrome[4] that is associated with disorders of the corpus callosum becomes more apparent as the cognitive and social demands on people increase as they age. This neuropsychological syndrome is characterised by reduced interhemispheric transfer of sensory-motor information; (2) reduced cognitive processing speed; and (3) deficits in complex reasoning and novel problem-solving[4]. These impairments translate to increasing difficulties through schooling and post-schooling years, a widening gap between peers and real daily struggles trying to navigate a society that often lacks an understanding of invisible disability.
- Prior to the NDIS and the developing evidence base about DCCs, people with increasing challenges, as above, were often overlooked and excluded from supports and services, not due to a lack of need but due to systemic barriers, those well-documented barriers related to rare conditions[5] and invisible disability. As people with a DCC work significantly harder to complete the tasks undertaken by people with a typically developed corpus callosum and have been excluded from supports, many adults have complicated experiences of burn out, isolation and subsequent significant psychosocial difficulties.
- The complex needs of people with a DCC can be overlooked. The spectrum of impacts and impairments associated with DCCs is broad and cannot be predicted based upon the diagnosis alone. We have unfortunately heard of some members of the DCC community being supported for some of their reasonable and necessary needs, while other areas are denied because it doesn’t fit with the planner’s limited knowledge or opinions of DCCs.
- The focus on a primary disability is misleading. Disability is not a condition or diagnosis, as noted by the NDIA who aims to be guided by the Social Model of Disability. Many people with a DCC have a number of diagnoses that may reduce their functional capacity.
- The supposed divide between medical and disability presents a challenge. With the acknowledgement of the funding models and departments, we accept that disability and medical care are considered as two different areas of need; in reality, this division is tenuous. A person may
[4] Brown, W. S., & Paul, L. K. (2019). The neuropsychological syndrome of agenesis of the corpus callosum. Journal of the International Neuropsychological Society, 25(3), 324-330. https://doi.org/10.1017/S135561771800111X
[5] Molster, C., Urwin, D., Di Pietro, L., Fookes, M., Petrie, D., van der Laan, S., & Dawkins, H. (2016). Survey of healthcare experiences of Australian adults living with rare diseases. Orphanet J Rare Dis, 11, 30. https://doi.org/10.1186/s13023-016-0409-z
have a complicated medical history due to the impacts of their disability, and their disability may impact their health. At least one member of our community has had their disability incorrectly considered ‘medical’, when in fact there is no treatment to correct a congenital anomaly of the corpus callosum. This point again highlights the challenges of accessing support for a rare condition that results in disability for many.
The NDIS Information, Linkages and Capacity Building grants
AusDoCC was a successful recipient for funding under the NDIS ILC grants. This funding enabled the volunteer committee to improve capacity and efficiency to meet governance responsibilities and to deliver new or expanded programs that develop the capacity of individuals within our DCC community. These grants have been an outstanding success, enabling change. The committee appreciated the contact with the grants coordinators and the response to the feedback about the outcomes reporting requirements. The committee understands the grants will now be transferred to the Department of Social Security. We remain hopeful that funding rounds will remain focused towards grassroots disabled persons and family organisations – groups that struggle to be competitive against mainstream organisations which pay executives significant salaries to be competitive in funding rounds.
This year, the NDIS supported AusDoCC in an endeavour to raise awareness through a course of media releases for the International Disorders of the Corpus Callosum Awareness Day. This campaign was a great success in raising awareness of DCCs and, apparently, one of the most viewed NDIS stories.
The proposed implementation of independent Assessments
While compulsory Independent Assessments have not yet commenced, the announcement of such has created anxiety and fear among the DCC community and the wider disabled community.
We refer to the Joint Standing Committee on the National Disability Insurance Scheme Recommendation 18 from the 2019 Progress Report[6]:
3.58 The committee recommends the Australian Government consider adding to the Guiding Principles of the NDIS Act, a further principle aimed at ensuring that the NDIA systematically engage and collaborate with the disability sector and people with disability in the development and review of its operational plans and guidelines.
We appreciate the committee’s clear recommendation for the NDIS to systematically engage and collaborate with the disability sector, and we wish to highlight that the move towards independent assessments goes against this recommendation made by the committee. To our knowledge, the introduction of independent assessments was not discussed through the Participant First Engagement Initiative[7]. We applaud the great communication with participants through this initiative, although the fact that something as important as independent assessments was not presented for discussion and feedback suggests there is a tokenistic flavour to this engagement initiative.
[6] Joint Standing Committee on the National Disability Insurance Scheme. (2019). Chapter 3: Other Matters, 66.
[7] https://www.ndis.gov.au/news/4993-participant-first-help-shape-ndis
While an independent assessment pilot study was underway, this was ceased due to COVID19[8] and the data collected to date is not accessible. The outcomes from the first stage of the pilot suggest “better planning conversations” and “improved decision making”, although no statistics or data about a comparison group are provided. Likewise, there is no further information about the “equitable plan outcomes”, such as how they determine equity or how they compare the needs or characteristics of the participants. For many, feedback surveys are undertaken within planning meetings, before a participant has the opportunity to see their approved plan and is within a vulnerable position, being asked by the person preparing the plan, which biases the findings.
We also draw your attention to the significance of the pilot being voluntary, with a high number of participants who were receiving their first plan. People receiving their first plan, and others who do accept an independent assessor may indeed benefit from this, with the reduced onus on them to provide reports. For many within the DCC community who have established therapeutic relationships with trusted providers who understand their individual and nuanced needs, independent assessments feel like a major step away from choice and control.
We ask the committee to consider the detrimental impact of introducing further complicated assessments. While the NDIS information suggests the independent assessors will help reduce the inconsistencies within the scheme and will work with the participant, many in the DCC community fear this is a measure that will effectively lead to their needs being overlooked once again. The suggestion that independent assessments will reduce the burden upon participants and their families is misleading. As a community, we already feel the heavy burden, with just the thought of having to yet convince another stranger, with limited understanding, if any, about the difficulties faced. It has been said that one of the biggest barriers to adults accessing support is that they present so well. Within our group, there are many people with quite visible disabilities, however, there are those who present with the neuropsychological syndrome associated with DCC, which may not be evident in a single short discussion. For these people, their impairments may only become evident over a period of continual engagement, when discussions and plans made earlier haven’t been achieved, recalled or understood despite good intentions.
The mental health implications of this proposal cannot be denied. Should the NDIS have worked with participants and the disability community, as recommended by the committee, they would have understood this. As mentioned, there is already significant anxiety about the introduction of independent assessments. We ask the committee to also consider, that many of these people are required to continually share their stories outside of the NDIS, whether for supports within schools, employment, job access services, for the DSP and more. The constant battle is draining. A focus on strengths, as suggested in the independent assessment advertising, while sounding like a positive shift, only opens the window for people with a hidden disability to once again be overlooked and excluded.
As a community, we are also highly aware that the independent assessments fall under the corporate strategy of Financial Sustainability[9]. The assessors will come at a high cost to the NDIS. Therefore we
[9] https://www.ndis.gov.au/about-us/publications/corporate-plan
expect significant reductions to plans and access. While assessors will be strangers to the participants, they are contracted by NDIS, write reports for the NDIS that will not be accessible to the participant, this questions the illusion of independence. We also anticipate an increase of Administrative Appeals Tribunal (AAT) reviews, with the precedent set by Ray v NDIS[10], where the AAT found the independent assessment inappropriate. We support the statement by Naomi Anderson, a lawyer from Villamanta Disability Rights:
“It is absurd to suggest that a stranger without appropriate qualifications can assess a person with complex disability in three hours and come to relevant and credible conclusions. We fear this will simply create a massive stream of applications to the AAT, with thousands of distressed and unsupported people in its wake.”
In the costing and planning for independent assessors, we hope that the NDIA considered the likelihood of increased costs related to FOI requests. We find it surprising that the NDIA would introduce independent assessments that participants cannot access and read; this cannot be reconciled with choice and control and respect for the participant. We also imagine there will be increased costs associated with complaints and reviews. Finally, given the detrimental impact on mental health, we imagine that there will be increased costs associated with supporting participants through these changes and annual independent assessments with strangers. Our community also value the financial sustainability of the NDIS as we want to see the scheme continue and improve. However, we do not believe that independent assessments will achieve this goal without significant and detrimental reductions to access and necessary support.
At best, independent assessments are a double up as the assessors would require information from providers. At worst, it will cost lives.
AusDoCC looks forward towards opportunities to engage with the NDIS in relation to independent assessments and further implementation and performance matters. The NDIS presents a major opportunity towards improving the lives of people with a disorder of the corpus callosum, and we value a genuine commitment to community engagement, as per the recommendation of the Joint Select Committee on the Implementation and performance of the NDIS.
We thank you for this opportunity to feedback to the committee, and we will be available should you require further information.
With thanks,
President AusDoCC: Australian Disorders of the Corpus Callosum