Submission 40 — Royal Institute for Deaf & Blind Children — Provision of services under the NDIS Early Childhood Early Intervention Approach | External submission

Provision of services under the NDIS Early Childhood Early

Intervention Approach

Submission to

Joint Standing Committee on the

National Disability Insurance Scheme

Prepared by

Private Bag 29,

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 Terms of Reference ………………………………………………………………………. 6

ECEI eligibility criteria …………………………………………………………………………………… 6
Service needs of ECEI participants and timeframes ………………………………………….. 6
Funding for services under the ECEI pathway and costs associated with ECEI services ……………………………………………………………………………………………………………. 8
Evidence of effectiveness of the ECEI approach ………………………………………………. 9
Data required to identify and deliver services to participants under the ECEI ………… 9
Adequacy of information for potential ECEI participants, accessibility and the principle of choice of ECEI providers …………………………………………………………………… 10

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Submission summary

Royal Institute for Deaf and Blind Children (RIDBC) is pleased to make this submission to the Joint Standing Committee on the National Disability Insurance Scheme on the provision of services under the NDIS Early Childhood Early Intervention Approach. RIDBC is a Transition Provider for the following regions in NSW: Western Sydney, Northern Sydney, South Western Sydney, Central Coast, Hunter and South Eastern Sydney.

In this submission, RIDBC responds to the following matters, namely:

 Eligibility criteria for determining access to the ECEI pathway

Service needs of NDIS participants and the timeframe for receiving support

under the ECEI pathway

Adequacy of funding for services under the ECEI pathway and costs associated with ECEI services
Evidence of effectiveness of the ECEI approach
Robustness of data required to identify and deliver services to participants under the ECEI
Adequacy of information for potential ECEI participants, accessibility and the principle of choice of ECEI providers.

In summary, RIDBC submits that the Inquiry should consider and/or make the following recommendations concerning:

Issue 1: ECEI eligibility criteria

That the NDIA develop, provide and publish clearer guidelines on eligibility criteria and access for families, Providers and referral agencies.

Children’s needs are assessed on condition sensitive tools

Issue 2: Service needs of ECEI participants and timeframes

That the NDIA consider more realistic timeframes for the scope of work required and provide more support and information for families who are currently not linked with any providers who are ‘shopping’ for a planning meeting.

Planning requirements need to be sensitive to sensory impairment.

Issue 3: Funding for services under the ECEI pathway and costs associated with ECEI services

That the funding for Transition Providers is reflective of the responsibilities that have been transferred from the NDIA, inclusive of funding provision for new children to receive interim supports while they are awaiting access and transition to NDIS.

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Issue 4: Evidence of effectiveness of the ECEI approach

Planning and subsequent Plans for NDIS participants should be reflective of evidence based practice where it exists.

Issue 5: Data required to identify and deliver services to participants under the ECEI

That the NDIA adopt agreed evidence based Reference Packages for children with hearing impairment to determine the level of funded supports.

Issue 6: Adequacy of information for potential ECEI participants, accessibility and the principle of choice of ECEI providers

That the NDIA provide consistent information to families and Providers about the ECEI pathway, access to the Scheme and timeframes.

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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  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 8,000 people from eighteen permanent sites across Australia, and by working remotely in rural and regional areas.

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.

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Response to the Terms of Reference

ECEI eligibility criteria As a specialty provider for children with sensory disabilities the ECEI eligibility criteria for early intervention should ensure scheme entry opportunities for children currently receiving support which was previously funded through state based funding.

However, it is suggested that this criteria is poorly understood by families who are now directed to transition providers in the first instance, as opposed to the NDIA which was the pathway established during the NDIS trial and early rollout.

The ECEI approach was designed to maintain natural referral pathways. However, the volume of children eligible for the scheme has placed a significant impost on transition providers who do not have the capacity to assess and support these children within ECEI. As a specialist provider for children with hearing and or vision impairment RIDBC has received continual requests from families trying to access NDIS supports as they call all transition providers trying to get onto a list to have a Plan developed.

Previous referral pathways enabling access to mainstream services for diagnostic assessments have also been disrupted as referral agencies are now directing children to transition providers.

If eligibility is determined for children within various defined groups of disabilities/diagnoses, children with these disabilities will have easier access, but for those without a defined disability, or yet to be diagnosed, will be disadvantaged. In the absence of criteria for hearing impairment and eligibility for NDIS the ECEI approach should recognise the benefit of early intervention for these children and support access to the scheme. Children with a unilateral hearing loss shouldn’t be denied access as a default. They should be assessed on their function and need for services. Some of these children have a profound loss and as it has not yet been determined if hearing devices are beneficial and the supports required. Many are being assessed or have received a cochlear implant which requires many hours of support.

Recommendation:

That the NDIA develop, provide and publish clearer guidelines on eligibility criteria and access for families, Providers and referral agencies.

Children’s needs are assessed on condition sensitive tools

Service needs of ECEI participants and timeframes As a specialist provider RIDBC continues to provide services for children with a vision or hearing impairment who are accessing state or Commonwealth funding and newly diagnosed children. Following the identification of hearing impairment, the most important

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factor in ensuring positive long-term outcomes for children with hearing impairment 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.

However, RIDBC does not have the capacity to undertake prescribed information gathering meetings and Plan development in the timeframes expected. It is acknowledged that the priority is to undertake this process for children currently receiving state based supports; and this is ongoing as the volume of children in this cohort has continued to increase as more children have met access. However, the volume of new children is also increasing and while RIDBC will provide supports to children with a hearing and vision impairment, there is an expectation from families and providers that they will be able to commence their access to NDIS and have a Plan developed and funded. Families are increasingly applying pressure to Transition Providers for the conduct of their planning meetings and this is often in conflict with the priorities set by the NDIA.

The information gathering meetings and development of Plans are resource intensive and the process was further delayed when Transition Providers were required to wait many months for feedback from the National ECEI team on the initial ten Plans submitted. Further the prescribed tools lack specificity to determine needs of children with sensory as opposed to physical needs.

The introduction of the ECEI approach was designed with the intent to identify the type and level of intervention required by children to achieve the best outcome. The ECEI pathway reflects a detailed process to ensure that young children receive supports most relevant to their needs in a timely manner. For children without a hearing or vision loss/impairment, and therefore not eligible to receive services at RIDBC, they are becoming frustrated as they phone Transition Providers ‘shopping’ for a planning meeting. For these children, and their families, the pathways for these children to be referred to mainstream services has been diminished as all referrals are now to the Transition Providers who have limited capacity to provide interim supports, and access to publicly funded services have high wait lists. Families without any diagnosis of a disability or developmental delay are now directed onto the ECEI pathway as opposed to intervention/allied health support through NSW Health.

The timeframes are further compounded by confusion around who is eligible for a planning meeting, who has yet to meet access and those on service who may appear on the defined list of another Transition Provider. Greater access to this information would assist Transition Providers in managing the volume of information gathering meetings, and fielding calls from parents trying to access defined lists.

As a result, RIDBC is providing intensive Early Intervention services for children with newly identified hearing or vision loss without a funding source.

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Recommendation:

Planning requirements need to be sensitive to sensory impairment.

Funding for services under the ECEI pathway and costs associated with ECEI services

Funding for the ECEI pathway is inadequate. As transition to NDIS occurs Providers have had their state based funding decreased. While participation in the ECEI approach resulted in Providers retaining 45% of block funding this was insufficient to undertake this role. This funding was based on the premise of supporting existing children on service and did not consider new referrals, limited access to alternate public funded pathways or the resource requirements to perform the planning meetings, develop and implement Plans, manage new referrals access to the scheme, collect scheme actuary data and provide information to families trying to access the ECEI pathway. The ECEI has resulted in a cost shift from the NDIA to Providers. This cost increases as more children seek access to the NDIS.

The roll out of NDIS and subsequent inability for children in transition areas to access Better Start funding has resulted in Providers delivering services as families await access to the NDIS and development of a Plan with no funding.

ECEI funding does not provide funding per child so Providers need to deliver appropriate early intervention services that meet the needs of the child. 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. The 45% provided of previous residual funds is not reflective of the actual costs of validated and effective comprehensive transdisciplinary early intervention programs.

The responsibility of Plan implementation is also resource intensive, and this often includes Support Connection or Support Coordination. For participants aged 7 and above Support Connection is a function of the NDI Planner or Local Area Coordinator (LAC) and Support Coordination was a funded NDIS support. For children on the ECEI pathway where families are unable to implement the Plan this role is now the responsibility of Transition Providers.

Recommendation:

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Evidence of effectiveness of the ECEI approach The introduction of this approach in late 2016, does not provide enough time to evaluate the effectiveness of this approach. 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.

Families have reported that they have found support through their Provider, who understands their child’s disability and needs, through the planning process reassuring. However, given the difficulties in aligning the PEDI-CAT indicator with the child’s functional capacity has resulted in funded supports that are not reflective of evidence based practice for children with a hearing impairment. 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 scope of supports provided to participants in their plans is highly variable despite similarities in needs and the substantial evidence available regarding the inputs required to achieve speech and language goals.

There is a significant risk that for the first time in 70 years, children who are deaf or have hearing loss will attain poorer speech language and communication development than previous generations.

Recommendation:

Planning and subsequent Plans for NDIS participants should be reflective of evidence based practice where it exists.

Data required to identify and deliver services to participants under the ECEI

The use of the PEDI-CAT is inadequate to determine the supports required for a child with a hearing or vision impairment. There is a significant difference between the PEDI-CAT rating and the child’s functional capacity. The data provided is limited and cannot be used a stand-alone tool. The questions are often inappropriate and upsetting for families who have children that may not be able to complete tasks independently.

For the purposes of ensuring the ongoing viability of high quality programs, decisions regarding service provision and funding should require that funded supports are consistent with international best practice and are demonstrably able to meet the needs of children with sensory disability.

In our experience almost all children with a hearing impairment receive a MILD rating on the PEDI-CAT. However, the hours indicated within the ECEI guidelines for this level are

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inadequate to support the evidence based intervention required for a child with a hearing impairment and address their speech and language milestones.

Recommendation:

That the NDIA adopt agreed evidence based Reference Packages for children with hearing impairment to determine the level of funded supports.

Adequacy of information for potential ECEI participants, accessibility and the principle of choice of ECEI providers

The information available on the NDIS website regarding ECEI is difficult to navigate without prior knowledge of the ECEI approach and families remain confused about the process when they contact the ECEI providers.

As a Transition Provider RIDBC developed resources to provide information to families. However, the continuing changes to NDIS information and processes particularly over the past six months mean that it is difficult to ensure that information remains current.

Information provided to families who call the NDIA or approach the NDIA offices is inconsistent with the content of the website and the expectations communicated from the NDIA to Transition Providers. This creates confusion and frustration for families and require Transition Providers having to explain the process to families. While this issue is raised at regular forums between Transition Providers and the NDIA Regional Offices this has yet to be addressed. As a result Transition Providers are managing the different expectations of the NDIA and the Community.

More clarity is required in information being provided to families, particularly around the timeframes for new children, to support Transition Providers in managing parent expectations. Transition Providers are not funded and resourced to manage the volume of new children attempting to access the Scheme.

With respect to the principle of choice the requirement to complete planning for children is as per the defined lists provided by the NDIA. However, the ability to support families’ choice in their ECEI Transition Providers is not a smooth process. Providers are unable to access information to determine if children on their service are on the list of another Provider. If families became aware that they were on another list, permission was required from the NDIA for children to transfer to their Provider of choice. This often requires multiple follow ups with the NDIA regions before permission is granted, further delaying the family in this process.

For new families that contact the NDIA they are directed to the website and choice of Transition Provider. However, in reality the capacity of the Provider to meet this unknown and undefined demand is limited from a funding and resource perspective. The NDIA have

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only recently acknowledged RIDBC’s role as a specialty Transition Provider for children with sensory disabilities. However, this has been after eight months of fielding enquiries from families who we are unable to assist being directed to us by the NDIA. Families have limited idea in what is involved through this process and there is no support for CALD families.

Recommendation:

That the NDIA provide consistent information to families and Providers about the ECEI pathway, access to the Scheme and timeframes.

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