About the Royal Institute for Deaf and Blind Children (RIDBC)
RIDBC is Australia’s largest non-government provider of education, therapy and cochlear implant services for children and adults with vision or hearing loss, their families, and the professionals who support them.
RIDBC response to the Parliamentary Enquiry into NDIS Planning
The Royal Institute for Deaf and Blind Children (RIDBC) is pleased to tender a response to the Parliamentary enquiry into NDIS Planning. This response is made in relation to NDIS planning and children with vision impairment and their families, specifically regarding the experience, expertise and qualifications of planners; the ability of planners to understand and address complex needs; the ongoing training and professional development of planners; the reassessment process, including the incidence and impact of funding changes; and other matters that relate to NDIS planning for children with vision impairment. Examples will be drawn from experiences reported by RIDBC staff, families of children with vision impairment seeking initial or renewal of NDIS funding, and external professionals. Where possible, potential solutions will be offered to the issues raised.
a. NDIS planning and the experience, expertise and qualifications of planners The incidence of vision impairment in children is very low and is estimated at approximately 70 children born each year across Australia requiring early intervention. Children begin learning about the world around them almost immediately through their sense of sight. When a child is unable to gather information through their sense of sight, it is essential to help them get that information in other ways. Vision impairment can impact on all areas of a child’s development including the way in which they explore and interact with their environment, and the way they learn and perform everyday activities. Early intervention is essential for a child with vision impairment as it enables them to develop skills such as early exploration, mobility, concept and literacy development, social interaction, independence and other specialist skills that allow them to access and participate in daily activities alongside their peers. Early intervention aims to provide the child with vision impairment with the foundation skills they will require to access formal education and enable access to learning and participation in meaningful activities at home and in the community. Without intervention the child with vision impairment is at risk of widening the gap of developmental delay and not reaching their full potential. With a deeper understanding and knowledge base of childhood vision impairment, including the impact on all areas of child development, the role played by supporting
specialist professionals, the complexities of vision impairment and the multiple inputs required can be effectively planned for. Without the understanding of the impact of vision impairment and the reasonable and necessary inputs required to achieve family goals for their children there will be a negative consequence for the child, their family and the capacity of providers to fulfil the goals of families and the tenets of the NDIS. RIDBC has recently been made aware of the lack of planners understanding of the critical role of the orthoptist in conducting functional vision assessments. This includes both children who are seeking access to NDIS, and those with NDIS funding, who are having their plan reviewed to reflect their changing needs as they progress through early childhood. Orthoptic assessments provide the NDIA planner with information relevant to building appropriate plans, by focussing on age and activity appropriate functional information related to daily activities. Orthoptists play a key role in collaborating with the child’s family and the team, to understand appropriate and realistic intervention strategies, goals; and assistive technology that may support a child with low vision to efficiently access visual information during their day. Previously, orthoptic assessments have been included in the budget for Capacity Building Supports of the participant’s NDIS plan, and these assessments have been approved. However, recently families have reported that in their NDIS planning meetings ECEI partners and LACs (Local Area Coordinators) have denied inclusion of funding for orthoptic assessments in the child’s NDIS plan. When clarification has been sought, NDIA senior team leaders have responded that such orthoptic assessments are the responsibility of the health system. It has also become apparent in several recent review planning meetings that the ECEI and LAC were not aware of orthoptists and queried whether this was a new profession. General eye reports may be available for NDIA planners to review. These reports are written by ophthalmologists, are diagnostic in nature, and therefore do not provide information targeted at a child’s functional capacity. Conversely, orthoptic assessment reports relevant to children with vision impairment are written by orthoptists working in the disability sector, and have a functional impact focus, rather than a health focus. Reporting includes information that supports the child’s meaningful and independent participation in home and community life. Without access to an orthoptic assessment report, the NDIA planner will be ill-informed about the child’s visual capacity, and lack understanding regarding the impact of the visual disability on the child’s function. This may result in the development of an inappropriate plan, and risks broadening the child’s developmental gap. Solution: RIDBC recommends that orthoptic assessments are a funded aspect of the Capacity Building Supports budget. Further, RIDBC recommends that LACs, ECEI partners, NDIA planners and team leaders undergo training regarding the role of the orthoptist in vision impairment. Such training could be provided by RIDBC in conjunction with other low vision service providers, e.g. short webinars, written materials.
b. NDIS planning and the ability of planners to understand and address complex needs It is essential that NDIA planners understand the critical nature of the early childhood years, the role vision plays in development, and the impact on all areas of development when vision impairment exists. Children with vision impairment often have accompanying co-morbidities such as developmental disability and additional health conditions. Findings from the Australian Childhood Vision Impairment Register (ACVIR) show that approximately 50% of families report that their child has additional disabilities, developmental delay and/or other health conditions in addition to vision impairment. This data also shows parallel levels of severity between vision impairment and developmental delay, i.e. the more severe the child’s level of vision impairment, the more severe their developmental delay (ACVIR, 2019). Therefore these children’s support needs are often complex, and if misunderstood by the NDIA planner, inadequate planning may result. Several families have reported a lack of understanding on the NDIA planner’s behalf having a detrimental effect, i.e. a lack of funding resulting in the child having suboptimum positioning whilst using their vision to access and interact with the people and activities in their environment. Solution: Ongoing professional development for NDIA planners to ensure plans include adequate funding for additional disabilities and complexities, not just the primary disability.
c. NDIS planning and the ongoing training and professional development of planners Families have consistently reported that NDIA planners have poor knowledge regarding childhood vision impairment, which has resulted in an unsatisfactory outcome. For example, one family attended a planning meeting where an NDIA planner observed the child and commented that the child appeared to function at a higher level than was reported by health professionals. The outcome was reduced support funding for this child. Solution: A project group has been convened with representatives from RIDBC and other low vision service providers. This group is currently constructing a developmental tool that includes suitable education materials referenced to childhood vision impairment. The project group will be recommending that NDIA planners complete training in childhood vision impairment using education materials such as these. In addition, it is recommended that the NDIA considers convening an expert reference group with representation from all Australian low vision and blind service providers. This group could be consulted regarding NDIA plans for children with vision impairment and/or complex needs.
g. NDIS planning and the reassessment process, including the incidence and impact of funding changes Families have reported at the conclusion of funding for early intervention or at plan reviews, their child’s new plan has been reduced, as the NDIA planner believed that the child’s needs had lessened as an outcome of early intervention, or that starting
school signalled reduced intervention needs. This is an inaccurate conclusion drawn by NDIA planners. Rather, the child’s needs may have changed in relation to their developmental stage but not necessarily lessened. One example that demonstrates a significant drop in funding is a school age child with vision impairment and complex needs (requiring multiple therapies and ongoing equipment support needs) receiving a new plan of $7,000 following transition from early intervention in which he received a plan of $22,000. Solution: NDIS planners to receive training on the impact that vision impairment has at different stages of early childhood development and beyond. Continued consultation between planners and vision specialists working closely with the families is required to ensure the planners build future plans on current advice. In response, RIDBC has implemented a new NDIS progress report template that addresses recommendations for future plans and will support NDIA planners with the review planning process.
m. NDIS planning and any other related matters. RIDBC frequently receives enquiries from paediatric ophthalmologists for advice on acceptable NDIS reporting styles, and have reported instances of children diagnosed with a significant permanent vision impairment who have been denied access to NDIS support funding. Paediatric ophthalmologists describe that some clinical eye reports have been declined as they do not include the child’s visual acuity. It may not be possible to assess a child’s visual acuity clinically due to the limitations and challenges imposed by the child’s behaviours, age and co-morbidities. Findings from ACVIR show that 25% of children were not able to participate in visual acuity assessment (ACVIR, 2019).
Solution: RIDBC is evaluating a template that bridges the gap between clinical reporting (by ophthalmologists) and NDIS reporting needs. This template could be made available to paediatric ophthalmologists, to streamline reporting for NDIS access.
The NDIS “List B - Permanent conditions for which functional capacity are variable and further assessment of functional capacity is generally required” , under section 4 “Conditions resulting in sensory and/or speech impairment “ lists several “disorders of the choroid and retina where permanent blindness diagnostic and severity criteria are on List A are not met”. This list is limited to types of retinal dystrophies and excludes additional eye conditions that are permanent and known to cause variable functional capacity in children.
Solution: Based on the findings from the ACVIR, it is recommended that List B is amended to include the conditions known to have variable functional impact such as
Albinism, Uveitis, Optic Nerve Hypoplasia, Nystagmus and Cortical Vision
Impairment.
The NDIS “List D - Permanent impairment/early intervention, under 7 years – no further assessment required” , under section 4 “Conditions resulting in sensory
and/or speech impairment “ fails to list conditions relating to permanent vision impairment and requiring early intervention.
Solution: It is suggested that additional conditions are included to ensure immediate funding to avoid broadening the developmental gap. These include Cortical/Cerebral
Vision Impairment, Congenital Motor Nystagmus, Oculomotor Apraxia, Optic Nerve
Hypoplasia, Optic Atrophy, Cone Rod Dystrophy, Rod Cone Dystrophy, Cone
Dystrophy, Oculocutaneous Albinism, Leber’s Congenital Amaurosis, Bilateral
Anophthalmia, Bilateral Congenital Cataracts, Bilateral Aniridia, Bilateral Coloboma,
Bilateral Congenital Glaucoma, Bilateral Sclerocornea, Retinitis Pigmentosa,
Achromatopsia, Congenital Stationary Night Blindness, and Bilateral Peters’
Anomaly.
RIDBC is aware of several cases of school age children undergoing RIDBC Assistive Technology assessment (to recommend appropriate technology to support the child’s NDIS goals), who have ultimately not had the recommendations approved. The rationale provided in one instance was that the child had access to the technology at school which could be taken home. For another, the planner suggested more options should be explored. For this particular child, there were no other options to trial other than those recommended. The wait time for the outcome of Assistive Technology recommendations can also be prolonged. One family reported submission to NDIA in 2017, but no offer of funding 2 years later, leaving the child without access to their home computer. The child has now been asked to undergo reassessment to ensure NDIA have updated information about the child’s assistive technology needs.
Solution: Further education of ECIA partners, LACs and NDIA planners regarding technology solutions for a child with vision impairment and how they use this to access and participate in recreation, home and community activities. This training could be provided by RIDBC in conjunction with other vision service providers. Further review of current assistive technology approval processes in consultation with specialists in the vision sector may decrease the approval timeframes and ensure that participants are able to meet their goals.
RIDBC is grateful for the opportunity to submit this response to the Parliamentary enquiry into NDIS Planning, and would value the opportunity to discuss any issues with the Committee.