The NDIS can appear rigid and uncaring to some struggling with disability, including low vision and blindness. But Dr Sue Silveira says there are ways orthoptists can help with that, and the system’s navigation.
Orthoptics is a recognised discipline in eye healthcare that specialises in the assessment, diagnosis and non-surgical management of eye and vision disorders.
Orthoptics is essential for promoting better quality of life in both adults and children with vision impairment, and orthoptists who work in vision rehabilitation provide specialised assessment, reporting and support that closely reflect the person, while recognising and respecting their immediate goals and future plans.
Those working in the vision impairment sector may be self-employed or work for service providers such as Guide Dogs, Vision Australia and NextSense.
People will seek out an orthoptist for vision rehabilitation after they have received a diagnosis of an eye or vision condition related to vision impairment. This means they have already been on a significant journey of clinical investigations involving ophthalmologists, and perhaps other professionals such as paediatricians, genetic specialists, neurologists, endocrinologists and allied health professionals.
This journey continues as they face applying for NDIS (National Disability Insurance Scheme) funded support.
Often when people finally seek out an orthoptist, they are coping the best they can with a life-changing diagnosis and what their future might look like.
They may have also faced challenges with the requirements of the NDIS. Orthoptists who work in vision rehabilitation understand, they listen, put the person and their family first, and provide support to help make decisions that are informed, but also led by the person and their family.
One of the joys of orthoptic practice in vision rehabilitation is the diversity of people supported, ranging from people who acquire vision issues later in life, to children born with vision impairment or those who develop it during childhood or adolescence.
Alongside that vision impairment, people often face other complex health conditions and psychosocial situations, all of which require tailored supports, including those funded by the NDIS.
The key to ensuring a successful journey with the NDIS is clear: person-centred and goal-orientated reporting.
Orthoptists conduct functional assessments that reveal the true nature of the person’s vision by exploring their everyday use of vision, their preferences, and the environment that allows them to function at their best. The outcome reveals the person’s preferred strategies allowing sustained and meaningful access. This includes use of assistive technologies, low-vision aids, glasses and environmental adjustments.
Orthoptic reporting clearly conveys to NDIS planners and decision-makers what is needed now and what should be planned for. This reporting provides critical information for the person, their family and other professionals, all of whom need to build their understanding to become confident advocates who ensure NDIS funded support aligns with the person’s wishes and goals.
Vision impairment, especially in children, is somewhat rare and this leads to a lack of general awareness and anonymity.
We have seen this in NDIS approaches. Things are improving but we carry the burden of a lack of recognition by the NDIS for funding and supports.
A general misunderstanding about low vision and blindness has been evident, especially by NDIS planners. There have been inconsistencies in decisions regarding supports that will be funded.
People with complex conditions have found the NDIS rigid – in the deafblind sector it has been very challenging to get funding for dual sensory impairment.
The NDIS has proven difficult for some families to understand – how can they advocate for their loved one when they can’t navigate the system themselves?
Sadly, some people have had to dispute the level of funded NDIS support that has been approved. Some have abandoned the NDIS and chosen to self-fund where they can.
The peak body for orthoptists – Orthoptics Australia – works tirelessly to raise the profile of people with vision impairment and the need for vision rehabilitation.
Authorities need help in understanding that vision rehabilitation provides critical functional support rather than medical supports, which brings the NDIS into closer alignment with its own core goal – to support people with disabilities to achieve greater independence, social and economic participation, and a better quality of life.
Australia is lucky to have a dedicated group of orthoptists working in vision impairment to provide personalised assessments and support to help people navigate their deeply personal, non-linear journey, one that may be filled with uncertainty, altered life plans and long-term grief.
The system itself – the NDIS – also benefits from advocacy by orthoptists and Orthoptics Australia, to hopefully become one that supports the goals of people with vision impairment to be independent, to exercise their choice and control, to live to their best life.
About the author: Dr Sue Silveira is a qualified orthoptist who holds a conjoint academic position with Macquarie University and NextSense. She is the course director for the Master of Disability Studies and a senior research fellow.
