General issues around the implementation and performance of the NDIS Submission 75
Developments in the support for children with
hearing loss under the NDIS Update as of 24th February 2019; Dr Jim Hungerford, Deputy Chair
First Voice
First Voice is the representative body for the leading early intervention centres across Australia, New Zealand and the United Kingdom supporting children with hearing loss to achieve spoken language, mainstream education and social inclusion.
Developments in the support for children with hearing loss
The NDIA has engaged with the sector intensively over the last year in order to develop approaches under the NDIS that will appropriately support children with hearing loss. Excellent progress has been made and work is ongoing to finalise the remaining areas over the next 3 months.
First Voice thanks the NDIS for this outstanding work, however a critical remaining area is: 1. A significant proportion of children have factors outside the audiological diagnosis that significantly increase the service they require, such as already having a diagnosed communication delay; where they have insufficient access to sound to provide for appropriate language development; or where there is a complex family context or challenges in family engagement that is preventing the family from appropriately implementing the therapy. The new 4-tiers system for assigning first plan level does not include these factors, it relies solely on audiological diagnosis. First Voice believes the initial plan should recognise these factors in determining the level of funding required.
Other important remaining areas are: 2. Children with additional disabilities beyond hearing loss often have a plan that has a major shortfall in funds versus the cost of the hearing services plus the other services. The funding is not specified to the different services and the families do not have the experience to understand how best to allocate their funds. First Voice believes the NDIS should provide information to the families to assist in their choice, along the lines of ‘The total plan value has been determined from $x for specialised therapy for hearing loss and $x for other supports’. 3. Some planners are advising families to not engage with service providers until after their plan has been approved. This unnecessarily delays the commencement of the child’s specialist therapy at a critical time and creates the risk of a language delay. First Voice requests that the NDIS instructs their staff dealing with children with hearing loss to encourage families to see specialist service support as soon as possible, not waiting on plan approval. 4. Families that are struggling with the diagnosis or are in complex circumstances (socioeconomic disadvantage, CALD, etc) often do not engage with the new referral pathway, resulting in lengthy delays until they have an approved plan. Additional effort is required from the appointed Early Childhood Partners to ensure these children are rapidly enrolled. First Voice believes that the NDIS should establish performance benchmarks for Early Childhood Partners to ensure these families receive their initial plan within 2 months of their eligibility being established. 5. The new referral pathway utilising Australian Hearing is working well for most newly-diagnosed children (except as noted in 2 above). However this approach does not apply to children already engaged with Australian Hearing and there are a significant proportion who still do not have a plan, a year after nominal 100% eligibility First Voice believes the NDIS should commission Australian Hearing to check, and if required, initiate the NDIS process at the next appointment Australian Hearing has with each child.
First Voice - paper for the Standing Committee on the NDIS February 2019.docx Page 1 of 4
General issues around the implementation and performance of the NDIS Submission 75
Specific areas of work
Eligibility for the NDIS
The new criteria that have been established for the eligibility under Early Intervention have been working well.
Referral pathway
This had been a major issue, however in August 2018 a new pathway for children who have just been diagnosed was introduced and it has been working well in most instances. The new pathway involves Australian Hearing initiating the enrolment process at their first meeting with a newly diagnosed child; with a highly structured system then resulting in a first plan for the child normally within the next 3 weeks or up to 6 weeks.
The outline of the new system is:
1. Subsequent to diagnosis a child engages with Australian Hearing as per the existing pathways.
2. Australian Hearing then initiates the process for an access decision and the decision will normally
be made by the NDIS within 2 days (a new process & timeframe).
3. An experienced planner trained in hearing loss and deafness then works with the family to have a
plan approved, usually within 2 weeks (a new process & timeframe). This plan will cover standard
funding arrangements for Early Childhood Intervention providers as per ‘Plan levels’, below.
4. The family are linked to an Early Childhood Partner to support implementing the plan and linking to
Early Childhood Intervention providers if required. In some states there are additional state-based
support services.
This system relies on phone calls from the specialist planner to the families to finalise the plan, which is generally productive. However for families in complex circumstances, or those struggling with the emotional turmoil of a new diagnosis, there can be challenges in engagement that can delay the first plan for several additional months.
Due to the challenges in engaging with these families First Voice agrees with the NDIS that the relevant Early Childhood Partner should be responsible for engagement with families that are struggling or are in complex circumstances, however we believe specific targets need to be established to ensure that these families are not allowed to drift (they are often the families most in need of support). First Voice believes that the NDIS should establish performance benchmarks for Early Childhood Partners to ensure these families receive their initial plan within 2 months of their eligibility being established.
In addition, the new system only applies to children who attend Australian Hearing for the first time. We are aware of a significant proportion of children who have already been engaged with Australian Hearing but do not yet have a plan. In the absence of a specific process these children are not being prioritised for action and we believe a process must be put in place. First Voice believes the NDIS should commission Australian Hearing to check, and if required, initiate the NDIS process at the next appointment Australian Hearing has with each child.
Recently an additional issue has emerged, where an increasing number of planners are advising families of children with hearing loss that they should not talk to service providers until their plan is approved. This is causing families to not seek support, or even withdraw from existing support, at the most critical time for their child’s language development. First Voice requests that the NDIS instructs their staff dealing with children with hearing loss to encourage families to see specialist service support as soon as possible, not waiting on plan approval.
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General issues around the implementation and performance of the NDIS Submission 75
Plan levels
A major issue over the first few years of the NDIS has been challenges in setting appropriate plan funding levels. As part of the excellent work by the teams at the NDIA an interim approach of 2 standard tiers, based on audiological diagnosis, was introduced for children’s first plans. The use of the audiological diagnosis allowed the plan to be established within the very short time frame required (as per ‘Referral pathway’, above). The interim 2 tiers are now being replaced by a 4-tiered system which is much more closely aligned to the service costs incurred, for children requiring low, medium, high or intense support.
The new 4 tiers for the initial plans are expected to be implemented on 1st March 2019.
A critical remaining issue is that audiological diagnosis (degree of hearing loss) is the only factor considered for determining the appropriate tier for the initial plan.
The area of major focus during the initial management of children with hearing loss is on parental education and support. Success in this phase enables the family to make appropriate and informed decisions around communication approach, hearing technology, audiological management and language development. These must be made in the first few months after diagnosis, so that the short window of high neuroplasticity in a baby’s early life is not lost. The cost of providing the activities is not proportional to the degree of hearing loss.
In addition, a significant proportion of children have additional factors outside of the audiological diagnosis that significantly increase the service they require, such as:
1. already having a diagnosed communication delay (from a formal assessment of their speech,
language, etc);
2. where they have insufficient access to sound to provide for appropriate language development
(such as the inability of the family to keep hearing aids on, preventing the child from hearing
sufficient speech to develop language; or where the parents require increased support to ensure
consistent integration of hearing technology and specialised therapy into their child’s day-to-day
life); or
3. where there is a complex family context that is preventing the family from appropriately
implementing the therapy (such as the parents not speaking English and an interpreter being
required; lower family literacy or learning levels that impact on ability to access program content;
limited or no acceptance, understanding and commitment to the intervention program. All
increasing the level of support required).
The impact of the early intense educational phase and of the additional factors means that the plan tier needs to take these into account in addition to the audiological diagnosis.
The preferred approach of the NDIA to address these factors is for the NDIA Hearing Stream Lead Coordinator to be responsible for alerting the Early Childhood Partners when the participant is identified as having additional disabilities or other areas of need (which may be flagged by Australian Hearing at initial contact stage). The Early Childhood partner would be requested to prioritise and see the participant as soon as possible.
First Voice believes that the reliance of the Early Childhood Partner will not be successful, especially where the additional factors are of a specialist nature (such as assessing parent understanding of early intervention requirements; communication in babies; access to sound; etc). Early Childhood Partners are under significant workload pressures and experience has demonstrated that they do not appreciate the impact of issues such as these.
Inclusion of these factors needs to be implemented into the first plan to ensure that appropriate funding is provided during the most critical year of a child’s therapy. First Voice believes the initial plan should recognise these factors in determining the level of funding required.
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General issues around the implementation and performance of the NDIS Submission 75
Following the approval of the first plan, the Early Childhood partner will make contact with families to ensure they are implementing the plan and accessing an Early Childhood Intervention provider. They will also determine if the family have other areas of need that may require additional supports that have not previously been identified. For children with additional disabilities beyond hearing loss this would include funding for the appropriate supports.
A significant issue has been that the value of an approved plan for a child with multiple disabilities is often much less that the total cost of the required services. In these instances the family is in the very difficult position of trying to judge the relative clinical need for the different services. First Voice has requested that the funding allocated according to the above 4 tiers be restricted for the intended purpose of specialist services for hearing loss.
The NDIA has determined that it is unable to do this; however we believe that the families require some guide as to how their funding was allocated so they can include that in their decision. First Voice believes the NDIS should provide information to the families to assist in their choice, along the lines of ‘The total plan value has been determined from $x for specialised therapy for hearing loss and $x for other supports’.
Pricing
Following extensive and collaborative consultations, the NDIA has developed a draft of an Outcomes-based Funding Model. The details of this have not yet been provided to First Voice, however our understanding is that key features of the plan will be:
1. The pilot will be overseen by a specialist Advisory Group consisting of NDIA representatives;
participant representatives; representatives from specialist service providers nominated by the
NDIA; and academics/ independent experts invited by the NDIA.
2. The pilot program will include a structured evaluation program undertaken by an external
consultant. This will evaluate communication outcomes, goal satisfaction and flow-on benefits to
social & economic participation.
3. Specialist services demonstrating outcomes (defined by the NDIA) are allowed to participate in the
pilot.
4. Participating specialist services can invoice periodically rather than on a per-session basis, if they
are providing the program agreed with the family. The hourly rate used reflects the increased cost
of providing specialist services that achieve quantified outcomes.
5. To be eligible to participate in the pilot program services must demonstrate that children in the
service achieve set outcomes and benchmarks; including language, family goals, inclusivity and
reporting of assessments on all children. The assessments and reports will undergo a quality
assurance process to ensure the validity of the pilot.
It is expected that the pilot will commence in April 2019 and run for 18 months. The Agency’s intention is to better quantify the outcomes that can be achieved, and the flow-on benefits, so that an outcomes-based Pricing arrangement can be introduced in the longer term.
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