Submission to the
Joint Standing Committee on the National Disability Insurance Scheme
Inquiry into Transitional arrangements for the National Disability Insurance Scheme (NDIS) August, 2017
Prepared by Key contact:
Royal Institute for Deaf and Blind Children Chris Rehn
Private Bag 29, RIDBC Chief Executive
Parramatta NSW 2124
361 – 365 North Rocks Road,
North Rocks NSW 2151
Content
Submission summary…………………………………………………………………………………………….. 3
About Royal Institute for Deaf and Blind Children ………………………………………………………. 5
Response to the Issues …………………………………………………………………………………………. 6
- Boundaries and Interface ………………………………………………………………………………. 6
- Consistency of Plans ……………………………………………………………………………………. 7
- Rollout of ILCs …………………………………………………………………………………………… 14
- Other Related Matters …………………………………………………………………………………. 14 Submission by Royal Institute for Deaf and Blind Children Page 2
Submission summary
Royal Institute for Deaf and Blind Children (RIDBC) is pleased to make this submission to the Inquiry of Joint Standing Committee on the National Disability Insurance Scheme into Transitional Arrangements for the NDIS.
In this submission, RIDBC responds to a number of issues raised by the Joint Standing Committee, with particular reference to: Boundaries and Interface: Consistency of Plans; rollout of the Information, Linkage and Capacity Building Program (ILC); and, other related matters.
RIDBC has the capacity to provide further information on a wider range of issues and would welcome the opportunity to provide any further information that may assist the Committee in regard to transitional arrangements impacting the NDIS.
In summary, RIDBC submits that the Committee should consider the following key issues concerning:
Issue 1: Boundaries and Interface
Interface for clients across the range of services required to succeed have been disrupted resulting in families being delayed in accessing early intervention services, or making unsupported decisions that are leading to suboptimal outcomes. The full contestability of audiological services to date provided by Australian Hearing as the potential to adversely impact universal access to high quality paediatric audiology services. The boundaries of Australian Hearing have blurred from a government funded provider of audiological services, to now providing therapy and intervention services in direct competition with charitable and independent providers.
Issue 2: Consistency of Plans
Plans are highly inconsistent. Children with similar hearing loss and needs receive hugely misaligned plans. Australian Hearing are ideally placed to coordinate the client journey and NDIS planning process for people with hearing loss. The scope of supports provided to participants in their plans/packages, is highly variable despite similarities in needs and the substantial evidence available regarding the inputs required to achieve speech/communication and language goals. Planning frequently fails to account for all the needs of children with a preponderance to focus on the physical, to the detriment of language and communication development, which the evidence shows cannot be redeemed if not provided as early as possible.
Submission by Royal Institute for Deaf and Blind Children Page 3
There is a significant delay in accessing an NDIS plan from diagnosis of hearing loss, potentially delaying service commencement, or shifting the financial risk to charitable providers.
Issue 3: Rollout of the Information, Linkages and Capacity Building Program (ILC)
There has been limited capacity to date for Local Area Coordination and limited funding for grants will result in intense competition for funding, and potentially lack of depth.
Issue 4: Other related matters
Agreed evidence based Reference Packages in the area of hearing impairment along with guided referral, planner trained in the criticality of early intervention for children with hearing loss, have the potential to resolve many of the issues highlighted.
The role and worth of service providers as crucial partners in the NDIS endeavour needs to be acknowledged and valued. The NDIS/NDIA needs to have the resources to nurture and maintain relationships with Service Providers, and utilise the significant expertise built up over decades, or in some cases centuries to optimise the NDIS, and more importantly, outcomes for participants.
Australia has been widely recognised as a world leader in the provision of services to children who are deaf or hard of hearing, and the individual outcomes that have been achieved. The NDIS has been a major disruptor of this, and for the first time in 70 years, current and future generations of children born deaf or hard of hearing are at real and imminent risk of achieving outcomes worse than previous generations.
Submission by Royal Institute for Deaf and Blind Children Page 4
About Royal Institute for Deaf and Blind Children
Royal Institute for Deaf and Blind Children (RIDBC) is Australia’s largest non-government provider of therapy, education and cochlear implant services for children and adults with vision or hearing loss, their families, and the professionals that support them.
Our Mission is to provide quality and innovative services to achieve the best outcomes for current and future generations of Australians with vision and/or hearing loss.
We pride ourselves on working in collaboration with families, children and adults to tailor services that support and fit individual needs and life goals.
Services for children, adults, families and professionals:
Assessment and diagnostics Early intervention and early learning programs Specialist preschools, schools and school support Teleschool and telepractice programs Therapy and re/habilitation services Audiology and cochlear implant services Research, postgraduate and professional education.
SCIC Cochlear Implant Program, an RIDBC service, is Australia’s largest and most comprehensive cochlear implant program, setting new benchmarks and delivering the highest level of care and support at every stage of the cochlear implant journey.
RIDBC Renwick Centre conducts world-leading research and provides continuing professional education and postgraduate courses in a range of fields relating to the development and education of children with hearing or vision loss.
RIDBC services are provided to over 6,500 people from eighteen permanent sites across Australia, and in rural and regional areas through RIDBC Teleschool and telepractice.
As a charity, RIDBC relies heavily on fundraising and community support to continue to make a difference in the lives of people with vision or hearing loss.
For more information about RIDBC, visit www.ridbc.org.au.
Submission by Royal Institute for Deaf and Blind Children Page 5
Response to the Issues
- Boundaries and Interface For over 70 years Australia has been a world leader in the provision of hearing services and, in particular, the achievement of positive developmental outcomes for children who are deaf or hard of hearing. The circumstances that have enabled such success have been a combination of (a) the national availability of high quality, freely available, and independent hearing services from Australian Hearing (i.e., as a central reference point for progress from identification to engagement with intervention services), (b) timely and universal access to high quality amplification and assistive listening devices (i.e., under the terms of the Hearing Services Program), (c) the timely application of evidence-based transdisciplinary early intervention services (i.e., by a wide range of providers, predominantly in the not-for-profit sector), (d) access to implantable hearing solutions (cochlear implants and bone anchored devices), and, more recently (e) the availability of Universal Newborn Hearing Screening (UNHS) in all state and territory jurisdictions across the country.
The positive situation described above has ensured that all babies born with hearing loss and children who develop hearing loss later in life have had a streamlined and seamless journey from diagnosis to access to hearing aids or implantable technology and subsequent timely engagement with specialist transdisciplinary specialist early intervention providers.
Although the 2017/18 Commonwealth Government Budget announced the retention of Australian Hearing under Government ownership, transition plans announced in 2016 by the Office of Hearing Services indicate that Department of Health documentation Australian Hearing Services are destined to operate in a competitive environment for the provision of hearing services to children and young people (i.e., those under the age of 26) under the NDIS. Further, it would appear from Australian Hearing website that plans are under development for the organisation to become a provider of early intervention services and enter the contestable market for such services under the NDIS.
As a result of these developments, the processes that have hitherto ensured a seamless transition for children who are deaf or hard of hearing across all of the elements required to optimise are at risk of being significantly disrupted. The likely—indeed, almost inevitable—result will be significant delays in children and families’ access to early intervention which, according to all available evidence (see, for example Ching et al.,
- clearly indicates will have a significant negative impact on the achievement of age- appropriate developmental outcomes.
Up until the introduction of the NDIS, families were guided through the journey to access all the services required to realise a return on investment. Families who are in a high level of shock and grieving are now left to navigate a highly complex service environment and
Submission by Royal Institute for Deaf and Blind Children Page 6
are unable to gather relevant information to make informed decisions that will have a lifelong impact on the language and communication development of their children. These long term impacts are across all elements of society including but not limited to education, health and employment.
There is currently a lack of clarity in regard to how Australian Hearing will compete equitably in an NDIS environment, given that it will be a Government-owned agency competing for the delivery of services that will be funded by Government thorough the NDIS. The organisation’s ability to operate through Government funding on the one hand while competing with independent providers and charitable organisations for the delivery of services under the NDIS is a question that has not currently been addressed in the context of the Government’s decision to retain the organisation under their own control.
There is a significant likelihood that the current generation of Australian children diagnosed deaf or hard of hearing will for the first time in 70 years can expect to have worse outcomes than previous generations.
There is a clear and logical role for Australian Hearing, as a provider of Audiological services for children, to undertake a NDIS planning function for children who are deaf or hard of hearing and assist with navigation of the system; and to exercise informed choice and control in order to optimise language development and communications.
As families await access to the NDIS and development of a Plan, early intervention providers are delivering services without receiving payment, as previous funding arrangements are being phased out. NDIA planning and funding are not responsive to the urgent need for access to specialist hearing service providers and the critical therapy required by children recently diagnosed with hearing loss and their families.
The introduction of the Early Childhood Early Intervention (ECEI) approach was designed with the intent to identify the type and level of intervention required by children to achieve the best outcome. However the demand for service from Providers is high and the pathways for these children to referred to mainstream services has been diminished as all referrals are now to the NDIA to access funding. For those under 7 years of age this referral is now to Providers who have limited capacity to provide interim supports and access to publicly funded services have high wait lists. While families have reported that their access to NDIS is easier if the child has been diagnosed with a disability or a developmental delay the ECEI approach has forced families without a diagnosis onto the ECEI pathway as opposed to intervention/allied health support through NSW Health.
- Consistency of Plans RIDBC echoes the call from national and international experts within the hearing loss sector for cost-effective screening, prevention and appropriate intervention throughout ‘the life course’. The timeliness of delivery of early intervention programs is premised upon the identification of hearing impairment in children at the earliest possible time.
Submission by Royal Institute for Deaf and Blind Children Page 7
Following the identification of hearing loss, the most important factor in ensuring positive long-term outcomes for children with hearing loss is the provision of prompt and effective early intervention services. We know that early intervention services give children with hearing loss the best possible start to life, so that they can reach their full potential.
Under the NDIS there is a delay in access to the above early intervention pathway as the family await access to the NDIS and development of a Plan prior to accessing services. There is need for a streamlined approach to ensure early access and intervention through either the Hearing Services Program or the NDIS. The current NDIS Community Linkages and Early Childhood Early Intervention models do not provide direct or timely access to specialist hearing and early intervention services, delaying specialist service provision and access to optimal sound.
Intervention techniques that support auditory-oral language development such as auditory verbal therapy or other forms of auditory-oral intervention now account for the vast majority of early intervention strategies employed.
Universal Newborn Hearing Screening (UNHS) and early cochlear implantation are collectively creating a situation where most children with severe and profound levels of hearing loss are able to effectively access auditory communication.
Deaf and hard of hearing children are not, however, an homogenous group. Variability in communication, language and educational needs is an enduring feature of this population and requires individual responses for different children and families.
With this information in mind, RIDBC submits that there can be no single approach to early intervention that is applied to all families under all circumstances. Effective early intervention involves rigorous assessment of children’s and families’ needs and the provision of programs that that seek to match those needs. For most children, intervention based on auditory-verbal/auditory-oral intervention strategies will be the most appropriate approach. However, for other children the most viable access to social, cognitive, and language development will continue to be via sign language or some form of manual supplement to their use of spoken language.
The important point here is that early intervention programs should be responsive and able to identify children’s communication access needs at the earliest possible time. Waiting until children fail to achieve language and communication skills in spoken language before providing access to an alternative communication mode will create a delay in access to language and learning that will mean that the benefits offered by newborn hearing screening and early identification of their of hearing loss will have been squandered for some children. Regardless of the language that a deaf child will ultimately develop; the consequences of early versus later intervention and the provision of language learning opportunities in that language (spoken or signed) are significant.
Currently, complex decisions on service types and funding levels that are available to the cohort described above are being made by NDIA planners who in most cases have little or
Submission by Royal Institute for Deaf and Blind Children Page 8
no knowledge of a deaf or hard of hearing person’s requirements and do not typically have relevant expertise with this population. This has resulted in wide discrepancies in the levels of funding made available to children and adults with similar needs. This stands to compromise the adequacy of available services and the quality of outcomes for these individuals. The use of the Pediatric Evaluation of Disability Inventory—Computer-Adaptive Test (PEDI-CAT) to inform NDIS Plans is inadequate to determine the supports required for a child with a hearing or vision impairment. There is often a significant difference between the PEDI-CAT rating and the child’s functional capacity.
For the purposes of ensuring the ongoing viability of high quality programs, decisions regarding service provision and funding that are made by NDIA planners should require that funded supports included in individual plans are consistent with international best practice and are demonstrably able to be comprehensive of the needs of deaf and hard of hearing children and their families in terms of their particular communication requirements. In this regard, consideration should be given to a formal process of accreditation of providers to ensure both the comprehensiveness of service capacity and their adherence to quality indicators such as minimum levels of staff qualification and the use of evidence based practices.
Despite the significant evidence supporting the positive outcomes associated with comprehensive transdisciplinary early intervention programs, the current NDIS sessional reimbursement model fails to recognise the actual costs of validated, effective, comprehensive evidence based transdisciplinary early intervention programs.
The low level of public resources made available to agencies providing comprehensive transdisciplinary early intervention services, results in a reliance on charitable fundraising in order to prevent passing on additional costs to families, or market failure as a result of service closures.
There is a clear and urgent need for consideration to be given to new and more adequate means of public funding of comprehensive transdisciplinary early intervention services for deaf and hard of hearing children. Any change to funding models, however, should ensure that services that are funded operate in line with identified best practice and are comprehensive of the needs of deaf and hard of hearing children and their families. Under any such models, consideration should be given to a formal process of accreditation to ensure both the comprehensiveness of service capacity and adherence to quality indicators such as minimum levels of staff qualification and the use of evidence-based practices.
As a provider of assistive technology for hearing services through our cochlear implant program we have been providing access to sound processor upgrades for implants and other accessories to improve functional capacity for many of our clients. Throughout the NDIS trial period and up until November 2016 these were mostly funded through the NDIA following the provision of information on technology and cost.
Submission by Royal Institute for Deaf and Blind Children Page 9
A new process for Assistive Technology commenced in November 2016 indicating that the provision of hearing equipment now required a detailed assessment, quote and recommendation. However, it is evident from our experience that the application of these new requirements are being inconsistently applied across NDIA regions. The documentation for the recommendation of assistive technology is onerous and is resulting in delayed access for assistive technology due to the additional workload associated in providing this information to the NDIA.
Consistent funding and access to hearing solutions would ensure that there is a more level playing field for people with hearing impairment, and would contribute to positive impacts across all aspects of society.
Australia has a proud tradition when it comes to language and communication development for children who are deaf or hard of hearing, with significant generational improvements in outcomes. This has been achieved through provision of multidisciplinary service provision by expert teams, consistent with a significant evidence base. The costings are specific to language development and in general, are not reflective of any additional needs children may have.
The following are broad categories that providers have developed to describe programs where the communication outcome is through speech. The categories can be supported through literature and are reflective of comprehensive transdisciplinary programs that have demonstrable outcomes and return on investment.
- Intense level Early Intervention full program plus school transition (weekly multidisciplinary therapy based on the goals established by the family, by Listening
and Spoken Language Therapists, Paediatric Audiologists, Child & Family
Counsellors, Clinical Assessors and Early Education specialists, with up to one quarter of sessions including two or more clinicians; inclusion of integrated cochlear implant program where indicated; regular assessment of progress in listening skills, language, speech and social skills; plus weekly children social skills group plus weekly parent education program; plus intense school transition program focussing on pre-literacy, pre-numeracy, phonological awareness and classroom preparation)
- Intense level Early Intervention full program (weekly multidisciplinary therapy based on the goals established by the family, by Listening & Spoken Language Therapists,
Paediatric Audiologists, Child & Family Counsellors, Clinical Assessors and Early
Education specialists, with up to one-quarter of sessions including two or more clinicians; inclusion of integrated cochlear implant program where indicated; regular assessment of progress in listening skills, language, speech and social skills; plus weekly children social skills group plus weekly parent education program)
- Moderate level Early Intervention (fortnightly multidisciplinary therapy based on the goals established by the family, by Listening & Spoken Language Therapists,
Paediatric Audiologists, Child & Family Counsellors, Clinical Assessors and Early
Submission by Royal Institute for Deaf and Blind Children Page 10
Education specialists, with up to one-quarter of sessions including two or more clinicians; inclusion of integrated cochlear implant program where indicated; regular assessment of progress in listening skills, language, speech and social skills; plus weekly children social skills group plus weekly parent education program)
- Lowest level Early Intervention (monthly multidisciplinary therapy based on the goals established by the family, by Listening & Spoken Language Therapists,
Paediatric Audiologists, Child & Family Counsellors, Clinical Assessors and Early
Education specialists, with up to one-quarter of sessions including two or more clinicians; regular assessment of progress in listening skills, language, speech and social skills; plus weekly children social skills group plus weekly parent education program)
Royal Institute for Deaf and Blind Children, the Shepherd Centre and Cora Barclay Centre
have independently analysed and identified costs associated with providing evidence based services and offer the following figures based on demonstrated and repeatable outcomes, that based on literature are unlikely to be achieved through a sessional service model alone.
The Shepherd Centre (TSC)
- Intense level Early Intervention full program plus school transition $24,109
- Intense level Early Intervention full program $22,538
- Moderate level Early Intervention $17,739
- Lowest level Early Intervention $9,381 The above costs were determined by a standard cost allocation basis from the actual utilisation of clinical staff and resources with a FTE-based allocation of overheads. All costs of other activities were excluded – research, fundraising, external communications, preschools, school-aged programs, cochlear implant medical & audiological activities.
The per-child cost of the clinical program has been minimised following an intense Lean waste-minimisation program with a specialist consultant.
The Cora Barclay Centre (CBC)
- Intense level Early Intervention full program plus school transition $25,766 Submission by Royal Institute for Deaf and Blind Children Page 11
- Intense level Early Intervention full program $18,625
- Moderate level Early Intervention $12,417
- Lowest level Early Intervention $6,208 CBC costs are impacted by low overhead costs and generally lower SA costs in S&W and G&S.
CBC cost structures and unit costings were developed through an intensive (three month) consultancy and audit commissioned by the SA Government and undertaken by Ernst Young in 2011. The purpose of the review was to ensure CBC was financially viable in the long term under individualised funding via the NDIS.
The CBC unit costing methodology involves calculation of direct S&W and GMS costs for each service level plus a conservative allocation of overheads directly related to service delivery. Total direct costs per program level (intensive plus school transition; intensive; medium intensity and low intensity) is then divided by the number of children at each service level to derive an average unit cost per child per year.
The Royal Institute for Deaf and Blind Children
- Intense level Early Intervention full program (No school transition) $25,498
- Intense level Early Intervention full program $21,376
- Moderate level Early Intervention $15,398
- Lowest level Early Intervention $7,068 The above costs were determined by a standard cost allocation basis from the actual utilisation of clinical staff and resources with a FTE-based allocation of overheads. All costs of other activities were excluded – research, fundraising, Auslan programs, external communications, preschools, school-aged programs, cochlear implant medical & audiological activities.
The per-child cost of the clinical program has been minimised following an intense Lean waste-minimisation program with a specialist consultant.
While all services are based on similar principles and objectives of achieving language and communication, there are legitimate program variations that will impact costs.
Submission by Royal Institute for Deaf and Blind Children Page 12
Costings relating to NDIS Packages
Determining the funding provided through NDIS for early intervention in the deaf and hard of hearing early intervention sector is difficult as families have discretion as to what they choose to disclose, with NGOs on the whole providing services to ensure children are not disadvantaged and achieve their optimal outcome. The information provided below regarding NDIS funding for services was derived though a review of signed service agreements with the three providers. The task is further complicated as a result of the enormous inconsistency between NDIS funded plans across the cohort of children with hearing loss over the past 4 years. However, what is evident from this analysis is that service agreements with NDIS Participants are generally in the order of 40-50% of the actual direct service delivery costs of specialist providers’ evidence-based, multidisciplinary ECI services which have a demonstrated ability to consistently produce high-level language development, communication, education and whole-of-life outcomes for children who are deaf or hard of hearing.
In addition, there are significant delays being experienced between identification of a hearing loss and access to an NDIS package. As a result, providers are rendering services from the very first presentation so as to not disadvantage children or negatively impact longer term outcomes. It is indisputable that intervention from the earliest possible juncture improves the likelihood of age appropriate speech, language and communication development, hence the obligation on providers to intervene early at any cost. This is a significant impost on providers which has to date been borne by funding agencies, with society benefiting from the outcomes attained.
In order to ensure that evidence based outcomes can be achieved, planning and associated packages for NDIS participants should be reflective of evidence based practice where it exists.
While recognising the importance of choice, service models that are supported by evidence to achieve outcomes and goals should be supported. This is consistent with the tenants of the NDIS where early intervention yields down steam benefits to all areas of society and most critically individuals themselves.
Significantly, on an increasing regularity for children with multiple diagnoses, there is a complete lack of understanding of the multiple interventions required and the impact of sensory deficit on the usefulness of other therapies. The whole of life outcomes demanded by the NDIS and society cannot in an environment where planning is not guided by the evidence, and families goals are determined without an understanding of what is possible when all services are aligned around the needs of a child as has been the case for over 70 years. As a result of that service alignment, and clear interface with service boundaries that have built trust and collaboration, and realistic investment, Australia has had world’s best outcomes for over 70 years.
Submission by Royal Institute for Deaf and Blind Children Page 13
-
Rollout of Information Linkages and Capacity Building Program
The rationale of the Information, Linkages and Capacity (ILC) Program was to connect people with disability, their families and carers with community and mainstream supports. Furthermore to promote collaboration with local communities and mainstream services to create greater inclusivity. More importantly, to support capacity building for people with a disability, and not through an individually funded Plan package.
A key component of this funding was for Local Area Coordination (LAC). However, the majority of the LAC time is spent on Planning and they do not have the capacity to support Plan implementation and connection to community and/or mainstream supports. As such, this has likely resulted in a high number of participants requesting Plan reviews because they are unable to understand their Plans and the interface between mainstream supports.
There is limited funding available for the national and jurisdictional grants and it is acknowledged that the competition will be intense. It is noted that the ILC will not fund work that duplicates the role of LAC & ECEI Partners, policy advice, core funding, mainstream services or activities that belong in a NDIS Plan. However, the inconsistency in Plans and access to services as a result of the limitations of the above, and avenues to appeal decisions, mean that the ILC will not support those who are unable to access supports.
- Other Related Matters As mentioned, there is a significant inconsistency in the application of criteria for eligibility and supports, and limited feedback pathways for review of these decisions.
In more recent times, stakeholders have been working with pockets of the NDIA and NDIS to achieve better understanding of the issues for children who are deaf or hard of hearing. While the discussions have been very positive, after three years of raising issues, there is no resolution to the serious issues being raised by providers where outcomes for these children are likely to be worse than their peers in previous generations. The sector is seeing highly respected quality providers with demonstrable and repeatable outcomes unable to continue to provide services as a direct result of the NDIS/A failure to understand and respond to the needs of children who are deaf or hard of hearing.
Avenues for resolving disputes for both participants and providers are not clear, adequate or readily accessible.
o Specifically, it is difficult to contact NDIA as besides the 1800 number, there is no direct link for participants to speak to Planners, and calls to the 1800 number are generally not returned. o Minimal feedback is provided to explain decisions, and if someone is not eligible or does not have something funded there are no alternatives provided. This is disadvantageous to those who may have had this support previously funded under state block funding. The cost impact of this has the potential to impact on service providers or the participant.
Submission by Royal Institute for Deaf and Blind Children Page 14
Shift from block funding to NDIA has impacted on Provider cash flow. Provider registration issues are a barrier for not only new entrants but also for existing Providers unable to continue to provide existing supports.
With respect to mechanisms to deal with NDIA, there is an overall lack of accountability, responsiveness and transparency. The NDIA continue to acknowledge that they receive a high volume of calls/emails but nothing seems to improve. It takes multiple emails, calls, face to face visits at regional offices to solve issues, all of which come at a significant cost to providers.
NDIA Target for operating costs may not be practical as their current resources are not able to effectively manage the scheme and respond to participants and providers - for example; planning, reviews, problem solving and disputes etc.
The infrastructure required by providers in order to meet the requirements and constantly changing processes of the NDIA and support families navigate have added a significant and burdensome financial impact for charitable organisations. Combined with inconsistent and mostly inappropriate plan provision, and delays to participant access, lack of quality outcome standards, the transition to the NDIS is causing significant impost to providers whose mission is to provide evidence passed services in a timely manner to ensure predictable and replicable outcomes.
The role and worth of service providers as a crucial partner in the NDIS endeavour needs to be acknowledged and valued. The NDIS/NDIA needs to have the resources to nurture and maintain relationships with Service Providers, and utilise the significant expertise built up over decades, or in some cases more than a century to optimise the NDIS, and more importantly, outcomes for participants.
Submission by Royal Institute for Deaf and Blind Children Page 15