Vision Australia Submission
Response to the Inquiry into the Provision of Services under
the NDIS Early Childhood Early Intervention Approach
Submission to: Members of the Joint Standing Committee on the National
Disability Insurance Scheme
Committee Secretariat
seniorclerk.committees.sen@aph.gov.au
Date: 10 August 2017
Response approved by: Karen Knight, General Manager Advocacy and Engagement
Contact: Scott Jacobs
Vision Australia National Head Office
454 Glenferrie Road
KOOYONG VIC 3144
Introduction
Vision Australia appreciates the opportunity to respond to the Inquiry into the Provision of Services under the NDIS Early Childhood Early Intervention approach.
The United Nations Convention on the Rights of Persons with Disabilities recognises the rights of all people with disabilities to access the supports needed to live independently, inclusively and with dignity in the community. Equally, the Convention covers the rights of children with disabilities. Children who are blind or have low vision have the right to equal participation in all aspects of family and community life. For these rights to be realised, early intervention, encompassing support for children and their families, is paramount.
The Australian Government, via the NDIS, has a special responsibility to ensure the best possible outcomes for young children that lead to happy families and advanced opportunities.
Vision Australia Recommendations
We have identified a number of areas which, if addressed, will lead to better outcomes for all stakeholders. Vision Australia recommends that the following matters are addressed:
-
Provide Clear Information - NDIA to provide clear and consistent information for the benefit of all stakeholders and avoid the need for deep research to understand early childhood intervention services.
-
Develop Planning Partnerships - Develop planning partnerships with ECI providers including Vision Australia.
-
Establish ECP and Sector Collaboration - Establish pathways between Early Childhood Partners and the ECI sector to increase knowledge and understanding of best practice ECI and local area supports.
-
Increase Vision-Specific Understanding - Provide mandatory training in best practice ECI as it related to vision impairment for all Early Childhood Partners, NDIA and LAC staff, specifically planners.
-
Adequately Fund Travel - Ensure travel is a ‘reasonable and necessary’ cost in plans to enable the delivery of early intervention to children in their natural environments.
-
Review Choice & Control Processes - Review the current arrangements for Early Childhood Partners (ECPs) to ensure adequate monitoring in relation to choice, to ensure all available specialist providers are able to be offered to children and their families.
-
Take account of and resource response to multiple disability - Review arrangements relating to children with multiple disabilities to ensure that no specific condition or impairment is overlooked in the determination of supports and in the way the Support Plans are able to be implemented.
-
Investigate Interaction with Education system - Inquire into whether Education Departments and providers in the Education system (including State, Independent and Private schools) may be capitalising on the lack of clarity in relation to NDIS so that they do not have to provide funding for supports.
-
Greater Collaboration with Sector - NDIA to collaborate and coordinate ECI sector expertise, including Vision Australia to inform the development of a policy framework and guidelines for the ECEI approach.
-
Allow Review of Draft Plan - Enable parents to review the plan before finalisation/approval of the plan.
-
Improve Plan Quality - NDIA to ensure quality, equity and consistency in the planning process, to include clearer guidelines and training for planners, inclusion of representatives including specialist providers in planning conversations, prior to finalisation/approval of the plan.
-
Clarify Role of Support Coordination - Resolve the lack of clarity and guidance around the function, allocation and use of support coordination funding and variation in the quality of the support provided through delivery of transparent guidance to ensure support coordination is used appropriately.
Submission details We have identified a number of areas which, if addressed, will lead to better outcomes for all stakeholders.
Adequacy of information for potential ECEI participants and other stakeholders There is currently no publically available policy document or guidelines detailing the model of early childhood intervention being implemented in the NDIS ECEI. Information can be found through a variety of disparate sources including: NDIS Act, Annex E to the Statement of
Requirements Early Childhood Early Intervention Services, NDIS Price Guide, Operational
Guidelines: Access to the NDIS 9. Early Intervention Requirements, NDIS website and some tender documentation. However, this information does not provide an overarching explanation of how the ECEI approach will support children with disability and their families in the NDIS. Even for experienced staff working for specialist service providers, it is hard to locate relevant and definitive information.
Principle of choice of ECEI providers It is Vision Australia’s experience that choice may not be readily available to all participants, through the current operation of the Early Childhood Partners as the first point of contact in the NDIS for children and families. The ECP must have “suitably experienced and qualified organisations with strong local knowledge and understanding of the needs of children and their families to deliver the ECEI Services” (https://www.ndis.gov.au/ecei.html).
There appears to be insufficient oversight and monitoring of the referrals for the NDIA and the community to assure itself that choice is being offered and fulfilled.
We have concerns about the function of the Early Childhood Partners (ECP) in the rollout of the NDIS. The ECP has planning and assessing functions, but also provides direct services to children. This is an important function where children are experiencing developmental delays and require immediate access to services. However, we are concerned by risks to choice and control associated with this approach for the ECPs which can create an uneven market for competition. This is particularly the case where the disability or functional impairment is permanent (as is the case for the vast majority of children who are blind or have low vision) and the child or family is seeking to access specialist services.
The situation creates the perception that families do not have a choice, even when they may be aware of and prefer to receive services from another specialist. We would encourage collaboration with ECPs and other service providers in the early childhood early intervention space to ensure ECEI participants’ options are not limited.
As noted by the Productivity Commission on multiple occasions, we also have concerns relating to the current thin market of specialised services that is able to provide specific tailored supports and services that respond to disability specific issues. The viability of services in such a thin market must be considered and addressed. Low incidence disability cohorts such as vision impairment are particularly susceptible to the risks of a thin market: primarily those of geographic restrictions. Participants who are in rural or remote areas will struggle to access mainstream or alternative services (who even if present will have limited
specialist vision impairment knowledge or capability) and will frequently be limited in the social and community supports they can access.
For specialist vision service providers, delivering supports into remote or rural areas is challenging. Frequently the demand for services is spread across distances that require service providers to shoulder the burden of travel to deliver services. For children who are blind or have low vision, remote/online service delivery is inappropriate.
Face-to-face services, such as occupational therapy and physiotherapy, delivered in a young child’s natural environment, are crucial. A child’s natural environment includes the home, daily routines, the community, and early childhood education and care settings. Early intervention therapy for children who are blind or have low vision includes developing their skills around activities like engaging in play, that enhances their inclusion in mainstream environments like education.
Vision Australia urges decision makers to ensure relevant funding is included to enable service to be delivered to the relevant location. Vision Australia believes it is unfair for families and service providers to be put in a situation where they are required to draw down on participants’ support budgets for purposes of travel as this may impede them receiving adequate supports.
It is unclear how the ECEI approach responds in order to meet the needs of thin markets when helping young children and their families access services, or trying to overcome the barriers to accessing services associated with these exacerbating factors and demographics. A failure to respond appropriately inhibits the goal of choice and control for families.
Other matters Vision Australia’s experience is that planners and assessors do not always have an adequate understanding of the specialised needs of children who are blind or have low vision, and that the planning, assessment and service provision functions of the Early Childhood Partners risks the choice and control of participants being compromised.
There has been a lack of clarity and guidance around the function, allocation and use of support coordination funding and a wide variation in the quality of the support provided. Under the ECEI there has also been some confusion that support coordination and the key worker model fulfil the same role though this is not the case. Under best practice early childhood intervention, a key worker fulfils a number of functions including providing therapeutic support and linking the team (ECI and other professionals and family) around the child. Early Childhood Intervention Australia (ECIA) believes that better guidance and communication between all parties is essential to ensure support coordination is used appropriately, and Vision Australia fully supports this expectation.
Specialised Needs of Young Children who are Blind or have
Low Vision
It is vital that children with a permanent impairment receive the supports they need at the earliest possible point. The intervention targets the strategies that young children who are
blind or have low vision need in order to manage their disability as opposed to intervention that alleviates the disability.
It is also important that children who are blind or have low vision not be supported in isolation, but in the context of their families; the impact of blindness and low vision on parents and siblings and wider support networks must be recognised.
Support for families in the early years helps build the knowledge, confidence and capacity of families so that they are in a position to make the right decisions for their children and themselves in terms of identifying the supports needed and the most appropriate services with which to engage. Supporting families as whole entities provides the strongest foundation for a child’s capacity building, and a family’s quality of life.
The prompt and straightforward access to the NDIS enabled by the ECEI approach, in theory, will optimise a child’s learning, development and well-being, and their capacity to participate meaningfully in family and community life. However, we are deeply concerned that ECP planners and assessors, the first point of contact for young children and families, lack an understanding of the specialised needs of young children who are blind or have low vision – a general understanding about different types of disability is insufficient. We provide two case studies by way of illustration.
Case Study 1
An assessment by a Vision Australia Orthoptist recommended ‘Vision Impairment’ specific resources which were refused by the NDIA, while ‘Physical Impairment’ specific resources recommended in the same report were approved.
Background - The Vision Australia early intervention team recently submitted an Assistive Technology request for a 2 year old client with no vision. The application included a combination of ‘Vision Impairment’ and ‘Physical impairment’ related resources/equipment.
The ‘Physical impairment’ related resources/equipment were all approved whereas all the ‘Vision Impairment’ specific ones were refused. This includes the most basic tool for a young child to access literacy – a Perkins brailler. This is akin to denying the child access to a pen/crayon and paper to scribble.
This is the only way a vision impaired child can learn the early cause effect of “writing”. When he/she hits a key on the Perkins, he/she can feel the bumps or dots that are formed on the paper. This is like a visual child seeing the thick lines they scribble with a crayon. The young child is otherwise unable to develop pre-writing skills.
Other important items refused funding were the Little Room and Resonance Board – both are tailored, specialised equipment for babies and young children with vision impairment.
The Little Room and Resonance Board are designed to facilitate independent upper limb, spatial, tactile and auditory exploration for children with little or no vision. The acoustic properties of the resonance board can help a baby/child locate different objects using
hearing. The position of carefully selected objects facilitates upper limb exploration and hand play. A vision impaired baby/child is able to learn important cognitive concepts like cause and effect, object permanence through upper limb play and exploration. This is an important first step to helping him/her be more aware of his/her world and be independent in play.
Funding for the above ‘Vision Impairment’ specific resources/equipment has been rejected without any consultation with the therapy team and prescribers. On the other hand, funding for ‘Physical Impairment’ related resources/equipment in the same application were approved.
The Early Intervention team is concerned that the external parties who were tasked to assess the equipment application do not have sufficient knowledge and expertise about ‘Vision impairment’ to make the funding decision. We are extremely concerned about the lack of consultation with the prescribers (ie therapists) who work closely with the families.
The Vision Australia team understands that these are early days for the NDIS. Vision Australia is committed to educate all stakeholders about the needs of infants and young children with a vision impairment. We understand that not all assessors are familiar with vision impairment specific specialised equipment and we are most willing to provide specialist advice and consultation as required (noting that we are not funded to do so under the current arrangements). We implore NDIA planners and assessors to initiate conversation with the prescribing team before making a decision.
Case Study 2
“We do not believe that there is not enough clinical evidence in the application to meet the ‘Reasonable and Necessary’ requirement for NDIS funding” (NDIA Assessor) (Vision Australia observation – the above is a common response from assessors).
Background - We have ongoing concerns that our clients are not able to acquire non specialised technology such as iPad, iPod, cameras for magnification and so forth, through NDIS. Many mainstream technologies have inbuilt accessibility features that are comparable to specialised equipment. They can be acquired at much lower cost (as much as 5x less), have better access to customer support and service and are typically more portable. More importantly, they are not intrusive ie they do not look “specialised” and that facilitates social integration. The fear of appearing different can be a huge barrier to accessing the technology for our clients, especially children and young adults. We implore NDIS to be more flexible in considering technology request and to consider the psychosocial implications involved.
Accessible information for potential participants Vision Australia takes this opportunity to remind decision makers of the need to provide relevant information, plans in an accessible format.
Conclusion
For children who are blind or have low vision, intervention at the earliest possible point is paramount to building their capacity for meaningful participation in all aspects of family and community life.
Early intervention is also crucial in the context of a family as a whole, to help families navigate both the service system and their own resource and emotional needs. However, a lack of understanding of the specialised needs of children who are blind or have low vision by planners and assessors, along with risks to adequate choice and control, impedes these capacity building and family strengthening aims.
Vision Australia therefore urges the Committee, the Australian Government, the NDIA and other decision makers to address our concerns. We look forward to your response and wish you well in your deliberations. We would be pleased to provide further information and appear to give further evidence to the Committee in relation to this important matter.
About Vision Australia
Vision Australia is the largest national provider of services to people who are blind, deafblind, or have low vision in Australia. We are formed through the merger of several of Australia’s most respected and experienced blindness and low vision agencies, celebrating our 150th year of operation in 2017.
Our vision is that people who are blind, deafblind, or have low vision will increasingly be able to choose to participate fully in every facet of community life. To help realise this goal, we provide high-quality services to the community of people who are blind, have low vision, are deafblind or have a print disability, and their families.
Vision Australia service delivery areas include: Registered provider of specialist supports for the NDIS and My Aged Care Aids and Equipment, and Assistive/Adaptive Technology training and support
Seeing Eye Dogs
National Library Services
Early childhood and education services, and Feelix Library for 0-7 year olds Employment services, including national Disability Employment Services provider Accessible information, and Alternate Format Production Vision Australia Radio network, and national partnership with Radio for the Print
Handicapped
Spectacles Program for the NSW Government Advocacy and Engagement, working collaboratively with Government, business and the community to eliminate the barriers our clients face in making life choices and fully exercising rights as Australian citizens.
Vision Australia has unrivalled knowledge and experience through constant interaction with clients and their families, of whom we provide services to more than 27,500 people each year, and also through the direct involvement of people who are blind or have low vision at all levels of the Organisation. Vision Australia is well placed to advise governments, business and the community on challenges faced by people who are blind or have low vision fully participating in community life.
We have a vibrant Client Reference Group, with people who are blind or have low vision representing the voice and needs of clients of the Organisation to the Board and Management. Vision Australia is also a significant employer of people who are blind or have low vision, with 15% of total staff having vision impairment. Vision Australia also has a Memorandum of Understanding with, and provides funds to, Blind Citizens Australia (BCA), to strengthen the voice of the blind community.