When parents are faced with a major diagnosis for their child, it can be confronting and raw. Dr Sue Silveira says eyecare providers play an influential role when it comes to accessing appropriate funding.
Raising a child with vision impairment impacts on every aspect of a family’s life. Beginning with a suspicion that child may not see in a typical way, followed by a significant eye or vision diagnosis, families have much to consider and adapt to. The life they had imagined for themselves, and their child, is often altered. Much is expected of families at a time when they may be grieving and trying to navigate their “new normal”. Professionals once unknown to them now enter their world and become integral to their understanding and planning for the future.
“As the NDIS now represents the main source of funding for early intervention and low vision services, eye health professionals have a responsibility to understand the scheme.”
There’s a sense of urgency once a child is suspected of vision impairment, even before a diagnosis is made. Because vision impairment impacts all areas of childhood development, early intervention becomes critical to ensuring the child stays on track and receives suitable support. During this time, families need to work closely with low vision service providers as well as ophthalmologists, optometrists and orthoptists. Families need sound advice about their eligibility and access to support funding through the National Disability Insurance Scheme (NDIS). The NDIS service charter outlines an approach which is “transparent, responsive and respectful”. It aims to empower and enhance people’s lives by providing “reasonable and necessary supports” that encourage independence, and ultimately improve quality-of-life. Family participation in planning for services is also encouraged.
The NDIS approach recognises the needs of children. When a child is younger than six years and they have developmental delay, or when they are younger than nine years and have a disability, their support is considered under the NDIS’s “early childhood approach”. Even without a diagnosis, the NDIS may fund access to essential strengths-based and family-centred early intervention. However, the NDIS gate can be difficult to open and once through, the path can be tricky to navigate. So, professionals working with families should speak openly, ensuring families are aware of the scheme, providing them with links to the NDIS website while stressing the importance of early intervention and support for both their child but also themselves.
Ophthalmology reports are key to securing NDIS funding. Ophthalmologists should not delay reporting until a formal diagnosis has been reached. Instead, including comments that indicate the child’s visual development is atypical and is impacting on general development are very helpful and usually understood by NDIS planners. When an overview of the child’s visual function has been established, comments that estimate the level of vision impairment –it is likely to be mild, moderate or severe – and the nature of the child’s vision impairment – it is likely to be lifelong or may change – can be helpful.
As part of the planning process, families are asked to consider their short- and long-term goals for their child at a time when everything may seem uncertain and they feel ill-equipped. Ophthalmologists may also be asked to recommend supports for the child. However, it will be challenging for ophthalmologists to achieve suitable, targeted advice from the outcome of a clinical assessment. Rather, ophthalmologists should encourage families to seek out and work closely with specialist service providers. These specialists will partner with the child and family to jointly reach recommendations drawn from functional, developmental, assistive technology and orientation and mobility assessments.
At times, for a variety of reasons, a child may be denied access to the NDIS. Families are fragile when this happens; they feel abandoned and begin to distrust the system. It is important that eye health professionals attempt to understand why the child’s funding has been declined, to examine the nature of previous reporting and to change future approaches to reporting – don’t keep saying the same thing. It may be that the eye report has been too technical or clinical for the NDIS planner to understand.
As it is rare, childhood vision impairment is often incorrectly compared to vision loss in adulthood, with the impact on child development underestimated. As the NDIS now represents the main source of funding for early intervention and low vision services, eye health professionals have a responsibility to understand the scheme, to report clearly, and to question and advocate for children to ensure they receive NDIS funding to achieve their goals.
About the author: Dr Sue Silveira is the Course Director of the Master of Disability Studies, Macquarie University. She is also a Research Fellow and Orthoptist with NextSense, a not-for-profit and registered NDIS providing support people with hearing or vision loss.
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