Supplementary Submission to the Joint Standing
Committee on the National Disability Insurance Scheme
Inquiry into the provision of hearing services under the
National Disability Insurance Scheme
From the Cora Barclay Centre
Submitted by:
Michael Forwood
CEO, Cora Barclay Centre
185 Melbourne Street
NORTH ADELAIDE SA 5006
8 March 2017
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Overview
During the course of this inquiry the Joint Standing Committee has received evidence and submissions from First Voice and its member centres in relation to a wide range of concerns about the transition of hearing services for children to the NDIS and associated risks to children’s outcomes and the financial sustainability of expert service providers.
The extent and depth of these concerns has called into question the suitability of main scheme NDIS policies, funding and terms of business for early intervention services and programs.
Concerns have also been expressed about the suitability of NDIS early childhood early intervention access and funding arrangements that were introduced in September 2015, and are still evolving, for listening and spoken language early intervention programs originating in the health and education sectors.
The experience of the Cora Barclay Centre over the past 3 ½ years in the SA NDIS Children’s Trial is consistent with this analysis. The Centre now has 150 children in the NDIS, representing around three quarters of its eligible caseload. Many Cora Barclay Centre families have been in the NDIS for two or three years and the Centre, its families and the NDIA have together attempted to address virtually all of the identified issues, many times over. There has been no lack of willingness on the part of the NDIA to engage with these matters, yet they remain unresolved.
The First Voice Supplementary Submission identifies five key areas where NDIS arrangements conflict with basic requirements for effective multi-disciplinary early intervention. Based on our Trial Site experience, the Cora Barclay Centre is strongly of the view that fundamental changes are needed in the NDIS, quickly, to allow programs such as ours to operate effectively and continue to achieve the remarkable outcomes that are currently being achieved.
Over the past two months the Joint Standing Committee has been urged to ensure that foundational practices of early detection, early diagnosis, timely application of hearing technologies, and timely referral to expert providers are maintained and strengthened under the NDIS.
Less attention has been paid to other key requirements in achieving optimal whole-of-life outcomes for hearing-impaired children; namely:
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services and supports for children aged 6 to 18 years; including i. transition to school ii. services and supports to maintain and develop language and address personal development and mental health challenges iii. ongoing monitoring to school completion to ensure that the journey from infancy to adult life does not run off the rails.
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supporting the existing service provider culture which is: i. profoundly family- and child-centred ii. highly interactive between clinical team members, the clinical team and the child/family, and the clinical team and external service providers (as occurs in intensive, highly specialised, multi disciplinary medical rehabilitation program e.g., spinal injury and brain injury units); iii. strongly focused on professional development of clinical team members; and iv. heavily committed to research and development and continuous program improvement.
The former matters are highly significant for the Cora Barclay Centre, more so than for most early intervention providers in this field, because of the scale of our student support services. They are briefly discussed below.
The latter are listed so that they are not overlooked in consideration of any alternative funding models for listening and spoken language early intervention under the NDIS.
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Re SERVICES AND SUPPORTS FOR CHILDREN AGED 6 TO 18 YEARS
- Transition to school program Transition to school is a critical step in the journey of a hearing-impaired child towards their goal of a life of social and economic independence. Published research, expert professional opinion and parent feedback all testify to the challenges faced by deaf children starting school as they move from a supportive home life to a complex, noisy hearing environment with many attendant social challenges.
As documented elsewhere, hearing-impaired children throughout the world have poor educational outcomes compared with children with normal hearing with over 30% staying down a year level and significant numbers failing to complete school. This is attributable to a number of factors but there can be no doubt that ground lost as a result of a hesitant and unhappy start to school may never be recovered.
As a provider of services and supports to hearing-impaired children through all the stages from birth to school completion, the Centre has always been acutely conscious of the need for a thorough preparation for primary school. Prior to its new transition program in 2013, the Centre supported families in a variety of ways including choosing a school; general counselling and support; advice on classroom acoustics and hearing aid technologies; and teacher preparation and training – as well as undertaking a number of school visits prior to and after a child started school.
Notwithstanding these significant supports, the Centre continued to receive parent and teacher feedback about the difficulties encountered by deaf children in their early weeks and months at school. At the request of parents, an intensive transition to school program known as Bright Start was developed. This aims to:
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build social confidence through the development of pragmatic skills and theory of mind. Without these skills children are at risk of having difficulties in making friends;
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develop self-advocacy skills particularly around the management of hearing equipment and learning ways to improve their listening and learning environment; and
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build pre-literacy skills to ensure the foundations of reading and writing are in place. Over the past four years more than 30 children have graduated from Bright Start and begun school with increased confidence and skills to tackle the challenges they will face.
In 2016 the Bright Start was evaluated with formal assessments being undertaken at the beginning and end of the program. Areas assessed were: (1) awareness of sounds; (2) pragmatic skills; and (3) self-advocacy skills. In all three areas children showed very substantial improvements demonstrating the effectiveness of the program in preparing them for school.
Bright Start runs for 3 hours once a week for two terms and is delivered by a Teacher of the Deaf and an assistant. The Centre’s audiologist and a Speech & Language Specialist deliver components of the program. The program costs $4K per child for 24 weeks for a combination of teacher-directed and child-directed activities.
Bright Start seems unlikely to be funded under the NDIS. The main reason for this is that it is the only intensive program of its kind for hearing-impaired children in Australia. It is therefore unlikely to be incorporated in NDIS reference packages for children with hearing loss regardless of its established credentials. The Cora Barclay Centre’s view is that this is program that other service providers should adopt. The more likely result is that it will not be funded because it is unique. This in turn raises the question of the capacity of the NDIS encourage and reward innovation.
Under an outcomes-based funding model, an initiative such as this would be funded as part of the wider program with proven outcomes and a proven cost benefit.
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- Specialist services for students Long-standing research confirms poor educational outcomes for hearing-impaired students worldwide and documents the challenges they face in relation to classroom noise, fatigue and stress from listening effort, social isolation, low self-esteem and depression. Recent research has also been investigating issues related to executive function domains including working memory, functional memory, comprehension, and conceptual learning.
School-age students with hearing loss, including those with age-appropriate oral language skills, are statistically at significant risk of difficulties with maths and literacy
The Cora Barclay Centre provides services and supports to 190 students in government, catholic and independent schools. This represents around two-thirds of the Centre’s total caseload and approximately 45% of our service delivery costs.
As at March 2017, the Centre supports 90 students with NDIS funding, a further 60 are expected to join the scheme within the next 6 to 8 months, and 40 receive a “monitor only” service and are not expected to join the scheme.
Over the past 25 years, since ceasing to be a registered school, the Centre has developed comprehensive, targeted services for hearing-impaired students in all educational settings. It now offers a structured Teacher of the Deaf school visiting program with explicit goals in relation to Communication; Learning; Social Interaction; Self-Care; and Self-Management with each student’s program being tailored to their particular needs. The core service is supported by professional services and peer support programs (in two age-groups) from the Centre’s allied health team.
In addition to the core program, teacher and staff experience is that the service is important for many students in terms of motivation, maintaining clear speech, auditory skills development, continuing to wear their devices and other therapeutic benefits.
The Cora Barclay Centre’s annual School Leavers Outcomes Report (refer Attachment B, CBC Submission to the
JSC-NDIS 15 Feb 2017)) is testimony to the effectiveness of these services.
As with the Centre’s unique transition to school program, the future of the student support program is uncertain under the NDIS. This is of concern both because of its implications for South Australian children’s whole-of-life outcomes and its financial implications for the Centre.
There are two aspects to this threat. First; NDIS funding for school-aged children is based on the number of 1:1 therapy hours which leaves a substantial shortfall between NDIS participant funding and the overall cost of the program. This is because an itinerant teacher can only see 3 or 4 students a day. Secondly; as few practical details exist in relation to the respective funding responsibilities of the NDIS and schools under the COAG NDIS Disability/Education Interface Guidelines, uncertainty exists as to who (if anyone) will fund what.
The Centre’s interpretation of the Interface Guidelines is that the NDIS is responsible for services and supports deriving from, or directly relating to, a child’s disability – in this instance a student with hearing loss. On this interpretation virtually all of the services and supports provided through our student program – including communication, social, emotional and psychological supports – are the responsibility of the NDIS. In all, there is very little in the program that directly overlaps with a school’s pedagogic and education responsibilities. In spite of a number of requests for interested parties to meet and discuss this issue, a meeting is yet to be convened: so we remain somewhat anxious and in the dark.
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- Ongoing assessment and monitoring to age 18 years The third aspect of our student services covers assessments and monitoring of students during their secondary school years to ascertain possible changes in hearing loss and to provide a safety net for advice or, in occasional circumstances, a short-term intervention.
If adequate funding is forthcoming for the Centre’s core programs, the continuation of this important service can be maintained without additional funding.
Re A MODEL TO SUPPORT BEST PRACTICE, INNOVATION, RESEARCH &DEVELOPMENT
This purpose of this section is to draw the Committee’s attention to two further points namely (1) the superiority of program (i.e. outcomes) funding for early intervention over individual fee-for-service transactional funding and (2) existing providers culture of commitment to research and development and continuous program improvement.
The first of these was the essence of a short position paper for NDIA consideration in October 2016 entitled Notes on Early Intervention – Habilitation & Rehabilitation in the NDIS (refer Attachment 1). The paper briefly compares the dos and don’ts of established health services early intervention and rehabilitation practices.
The second point came to mind during a recent First Voice Research Advisory Committee meeting when member centres were invited to briefly report on current research activities. The project list (see below) – of around 20 current projects – reflects the total commitment of providers and their clinical staff to continuous improvement of services and outcomes for hearing-impaired children. This is further evidenced in First Voice and member centres’ annual reports. The contribution of the Royal Institute for Deaf and Blind Children (RIDBC) to the sector in relation to professional development activities is similarly impressive.
All such activities are generated by expert service providers in this field and sustained through relationships with academic and other research institutions. Costs are largely hidden and absorbed. It is hard to imagine such contributions being sustained at anything like this level under the NDIS unless alternative funding arrangements were introduced.
Current First Voice member centres, research projects include (refer JSC term of reference g): Early Intervention: 6 projects including language acquisition, the use of plurals with children with hearing loss; establishing normative data for theory of mind acquisition and Functional Listening Index data; effectiveness of parent education and group programs; Social skills assessment batteries; children’s listening environments; parent play; maternal capacity for reflective functioning and developmental correlates in children with hearing loss School-Age Issues including Mental Health: 5 projects including School age outcomes - NAPLAN outcomes, Literacy development of children with cochlear implants; Mental health and wellbeing of school-age children with hearing loss; Mental health, wellbeing and school experiences of young people with chronic conditions in mainstream schools; Relationships in teams and collective leadership outcomes in schools Program Evaluations: 2 projects namely Transition to school (pre and post program skills and aptitudes) and Music therapy for children with hearing loss Outcomes: 2 projects on Language outcomes of graduates in 2010-2016 and National educational outcomes NZ Technology: 4 projects including Tele-practice, tele-mapping and tele-speech perception; 3D printing and bio fabrication technology for children born with microtia; Digital approaches to enhance parent outcomes; Support informed decision-making in the audiological management of children with unilateral hearing loss Listening environments: 1 project on Listening effort - pupilometry research on school-age students
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RE SUSTAINABLE MARKETS AND TREATING PROVIDERS FAIRLY
The Cora Barclay Centre has sustained considerable financial losses as a direct consequence of the introduction and trialling of the NDIS in South Australia. The losses are not attributable in any way to the Centre. Such things happen. The Cora Barclay Centre would be grateful for any assistance that the Joint Standing Committee, or individual Committee members, might be able to make in redressing the situation.
In regard to the national rollout of the NDIS over the next 2 to 3 years, the Centre notes frequent assurances from the NDIA in relation to the financial sustainability of established providers under the NDIS and the need for them to survive in order to provide participants with choice. The failure of the NDIS to adequately fund participants choosing multi-disciplinary listening and spoken language early intervention programs such as ours can only result in a reduction in children’s outcomes or the demise of providers.
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ATTACHMENT 1:
NOTES ON EARLY INTERVENTION, HABILITATION & REHABILITATION IN THE HEALTH AND DISABILITY SECTORS
amended 8 March 2017
The purpose of early intervention is to intervene quickly, expertly and for as long as is necessary and prudent to minimise impending functional loss or damage (habilitation) or to optimize the restoration of functional loss (rehabilitation). It is justified on the basis of client/patient outcomes and economic benefit, where the benefit exceeds the costs of intervention.
Standard Early Intervention Best Practice:
- Best practice i. a pre-planned system response, founded on evidence-based protocols, is immediately activated to minimise loss and damage ii. the client is immediately directed to a specialist, multi-disciplinary early intervention/rehabilitation program iii. intervention plan is determined by experienced, expert staff in consultation with the client/family iv. intensive rehabilitation is maintained for as long as necessary to achieve maximum functionality
v. program intensity is based on regular objective assessments and is scaled as set goals are achieved vi. intensive intervention continues so long as gains continue or sustainable, high-level functionality is achieved vii. longer-term (re)habilitation, and maintenance commences been deemed appropriate based on clinical assessments; it is less intense and increasingly managed by the client/family following a proven program designed by experts viii. client maintains links with (re)habilitation partners for ongoing monitoring, assessment, advice and occasional further intervention as necessary ix. early intervention providers/rehabilitation team have a culture of applied research, development and innovation
x. program outcomes are recorded and published. 2. What doesn’t happen: i. action/intervention is delayed while course of action is decided ii. the cost of (re)habilitation is estimated and the money cashed out and assigned to the client iii. funding levels are determined by reference to other clients or other health conditions/disabilities iv. clients construct and manage their own program including engaging providers without specialist skills and experience
v. clients negotiate their own services plan with a generic planner who determines their funding vi. the duration and intensity of the (re)habilitation program is controlled by a non-expert planner vii. intervention funding ceases at an arbitrarily determined age or after a pre-determined period regardless of the patient/client progress and future prospects.
- What is happening with multi-disciplinary listening and spoken language early intervention for hearing- impaired children under the NDIS: the SA NDIS Children’s Trial Site Experience
i. delays frequently occur between diagnosis and referral to expert early childhood intervention providers; ii. early intervention funding is determined by ‘generic’ NDIA planners lacking relevant knowledge and expertise (both of hearing loss in children and early intervention best practice) iii. funding provided to NDIS participants is inconsistent and generally insufficient to meet the costs of their chosen intervention program iv. control of funding is with NDIS participants
v. as the there is no requirement for normative assessments, recording and publication of program outcomes vi. some children who would benefit from early intervention at a minimal cost are excluded from the NDIS
Michael Forwood
CEO, Cora Barclay Centre 20 October 2016
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