Submission regarding NDIS planning inconsistencies and inadequate support for children with complex needs | External submission

Submission to the Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Planning.

September 2019

EARLY START AUSTRALIA PTY LTD

Authors:

Julie Carr, CEO Early Start Australia: Contact Telephone

Karen Brown, Operations Manager Early Start Australia

Carolyn O’Mahoney, Practice Principal Therapy 4 Kids ESA

Contact Telephone Julie Carr

BACKGROUND/PREAMBLE:

Early Start Australia is a national multidisciplinary private enterprise providing evidence-based early intervention to children. Early Start Australia employs 130 therapists across Australia and has a growing clinic presentation throughout Australia. Early Start Australia is a registered NDIS provider and is certified with the Quality and Safeguards Commission. ESA clinics are located in WA, NT, QLD, ACT and Victoria.

ESA is pleased to provide a submission for the enquiry by the Joint Standing Committee into NDIS Planning as set out by the terms of reference outlined below.

TERMS OF REFERENCE OF INQUIRY TO NDIS PLANNING-

a. The experience, expertise and qualifications of planners Whilst we understand the complexity of the work the planners and partners undertake it is evident that many are not allied health or disability experienced and do not always have an understanding of developmental delay and disability or the breadth and complexity of services that are available. In our area of expertise (early childhood intervention and therapeutic supports) we work with all age ranges (from very young children through to adults) and across multi-disciplinary practice.

Overwhelmingly our experience of partners and planners reinforces the inconsistency in the approach to identifying what is needed and allocating appropriate funding. We have seen a lack of recognition of individual circumstances (eg a parent who has had a stroke and is a single mother receiving no support at all to get her child to and from therapy); and there is marked variation in plans being provided for individuals with same or similar needs. There is also some inconsistency and variable understanding of the support categories and how they apply eg we are seeing improved daily living skills (capacity building funding) being compromised with additional funds going to assistance with daily living (core support funding) even for young children or children with autism – that need therapy support to develop their capacity – not someone to come into the home and shower and dress them.

In cases where children present with complex needs, the plans often include numerous goals across multiple developmental areas – (eg language development; social skills; behavioural intervention; counselling) but there is only adequate funding for 1 hour a week or fortnight for therapeutic intervention. Families are then effectively having to “re-plan’ when they meet the therapy team and make decisions to only work on one goal or developmental area. Families are frustrated at the time lines leading up to their plan; don’t understand what is in it; don’t understand the funding allocations; and then when they try to access a provider they are being told the assessment and planning (for their therapy intervention) has to almost start again from scratch.

Staffing of ECEI partners, LACs and Planners seems to have been on high rotation (high staff turnover). Whilst there are instances of the partners/planners being allied health professional or similar we have seen the planning process work better and it is a less distressing experience for families. Plans generally contain appropriate goals and funding. In less common cases the Planner has engaged with us as a specialist provider (eg for children with complex physical and developmental disability) and this results in appropriate recommendations from the planner, who has taken time to understand the needs and be aware of the available services. Unfortunately, in some cases the proposed plan is then “revisited” by the NDIA delegate and then often reverts to a very generalist and “average” funding model, which is not appropriate for the individual. We have highlighted this in case example A below.

Any benefits of having a well-informed planner are negated with the internal screening of plans put forward by planners. It appears there is a rubric based on average need and it doesn’t allow for variance or individualisation despite the continued focus on individual choice and control.

Case example A A child with a rare genetic limb deformity was undergoing a plan review. The child is unable to wear mainstream shoes due to his bilateral foot deformity and requires shoes made by a specialist pedorthist, based on gait lab information.

Shoes cost about $3000 a pair and take 4 months to make. Bilateral limb amputation is a constant possibility for this child. With the custom-made shoes he can independently ambulate in all contexts of his life, attend mainstream school and remain pain-free. As his treating physiotherapist I asked for 3 pairs of shoes per year, given the shoes undergo significant wear with his altered gait pattern. Within 3 to 4 months they are ill-fitting due to wear and tear and predispose him to injury. Due to this fact the previous year he suffered a lateral ankle avulsion fracture that did not heal and required surgery. His ongoing pain and reduced mobility and function brought the possibility of amputation closer to reality. Post-surgery and with new custom-made shoes he became pain free, active and independent again.

His LAC planner was able to meet him and his parents, read all of my reports and could see that 3 pairs of shoes over 12 months was both reasonable and necessary. When the proposed plan was then submitted to the NDIA, the NDIA delegate rejected the plan saying that custom-made shoes should be cheaper and that 2 pairs a year are sufficient. Her information was clearly based on the average requirement for custom-made shoes. Two pairs a year leave this child very likely to suffer injury and increase his likelihood of becoming a bilateral amputee. His level of disability as a bilateral amputee will be significantly greater and he will not be able to be independent, pain free and mainstream. The NDIA decision to save $3000 a year by rejecting the LAC’s decision is likely to create a significant disability for this child that he would not otherwise have.

Suggestions

Introduce clearer and more consistent assessments prior to the planning meeting to provide a clear plan on services required
Utilise information provided on complex needs and listen to provider input
Ideally provide assessment information back to providers so they are not having to ask for information again (or re-do assessments)
NDIA recruitment for planners and other key roles, should aim to attract people with a solid understanding, or lived experience, of disability to ensure that all people with all disability are represented and understood
There needs to be better opportunities to check for plan consistency and language (along with an understanding of the ‘permanent’ nature of some disabilities)
Avoid short term cost cutting that will increase the risk of more permanent disability and functional impact

b. The ability of planners to understand and address complex needs NDIS planners do not always have a background in, or an understanding of, the reality for people with disability. The complexity of disability (and co morbidity) make it very challenging for planners to accurately determine goals and funding. Families that cannot articulate needs well (and don’t understand the language being used) are sometimes missing out on basic services and supports.

Whilst the focus on function is appropriate the translation of functional impacts to meaningful goals often does not make sense to a family. Eg we are seeing goals worded from global motherhood type statements “I want my child to be like all other children” all the way through to specific but unrealistic goals – “I want my child to play the guitar” (for a hemiplegic child); or “I want my child to say specific words like thirsty and sleepy; put water back in the fridge when asked; and eat 4 different fruit and vegetables”.

Providers welcome the addition of billing for non face-to-face service provision into the 2019-20 price guide. Generally, more complex participant disabilities are distinguished by increased non face-to face service provision. ESA have a mechanism for calculating a prediction of the required non face-to face billing time based on three main complexity determinants. Communication from Planners regarding this change, though, has not been particularly effective and families are often concerned about the implications for their funding.

ESA is unsure if non face-to-face time is specifically factored into the planning process and overall budget but based on plan variations it does not appear to be the case. ESA welcome the opportunity to discuss what comprises complexity from a provider perspective and how expenditure for complex presentations is predicted and quoted.

Case Example B

A current case involving a child with complex physical and neurological disability (who sadly is already 9 years old and has received no supports or therapy) has been given less than 1 hour a week of therapy time which needs to cover OT, Speech, Physio and determine what adaptive equipment and therapy he requires. His equipment needs include a specialised bed, standing frame and wheelchair. The time needed to review his requirements, trial equipment, liaise with other practitioners etc is inadequate and the child is potentially at risk of using inappropriate equipment.

Suggestions

Utilise the expertise of service providers in planning meetings
Planners ideally can better utilise information and consult with clinicians, health providers and carers about planning decisions in the context of clinical and disability issues that they are not qualified to address. Eg there are frequently cases where planners are changing therapy recommendations and telling families to use a ‘cheaper’ therapy assistant – with no understanding or appreciation of the skills needed and the complexity of managing a developmental delay or disability. The skills are not interchangeable, and this is causing anxiety amongst families
Address the internal NDIA rubrics that over-ride partner and planner recommendations without understanding the context of the participant’s individual disability and needs.
There seems to be a view that AHPs do not adhere to “reasonable and necessary” in their recommendations. This is not the case in the delivery of evidence-based practice (at ESA) and it is disappointing that this seems to be ignoring the critically important relationship that is NDIA, provider and participant. If we can include the provider as a well-informed member of the team and allow internal rubrics to be flexible to the context of the participant and their disability when assessing their needs, then individuals will be better off in having their reasonable and necessary needs met.
Provide appropriate funding allocation for complex needs and adherence to specialist and often highly technical advice rather than reverting to a formulaic approach
Focus on long term (insurance) principles and capacity building rather than short term cost cutting

c. The ongoing training and professional development of planners Understanding the diversity of disability and service provision is difficult to address. Allied health professional and disability workers who work in disability are also not experts in all areas but are required to undertake ongoing education and receive supervision and support in disability specific areas depending on their practice. The variability in skill sets of planners trying to deal with all manner of disability does not appear to be working for all participants. The requirements for qualifications and experience of allied health professionals is significant (as it should be) but the same level of rigour and expectation is not applied to partners and planners who are making critical decisions.

ESA have experienced circumstances where planners are not aware of changes in process within the NDIA. Examples of this are the “like for like” AT application process and the ATHM pilot run in parts of NSW and in the ACT during the months of June, July and August 2019.

On a regular basis we as providers are fulfilling an unpaid education and support role helping families navigate changes their planners are not aware of.

Case example C ESA staff prioritise attendance at NDIA information sessions to understand changes and did this for the ATHM pilots being run in Sydney and in the ACT. No information given described that the ACT trial was only applicable to 2 teams of LACs. Many of our clients underwent plan reviews during the trial period. Two of these clients had ongoing, unresolved AT requests spanning 2 years. ESA staff encouraged these clients to accept inclusion into the trial with a view to resolve these outstanding AT issues. We discovered that these clients did not belong to either of the two teams who were trained in the ATHM trial and as such could not be invited to participate. Of the hundreds of NDIS participants we have, and the handful with prolonged outstanding and unresolved AT requests, only one of our clients was in the right LAC team to be invited to participate in the ATHM trial. The trial was a good experience for this participant, who did not have outstanding AT requests. The execution of the ATHM trial resulted in missed opportunity to resolve longstanding AT problems for the most vulnerable clients we support. The frustration experienced by all is a symptom of the lack of collaboration between NDIA and providers to reach outcomes for NDIS participants.

Suggestions

Planners must use information and consult with clinicians, health providers and carers about individual needs; clinical reasoning; equipment recommendations; therapy requirements etc to ensure decision making is consistent
Consult with providers regarding changes in process, including input from providers that may benefit the NDIA regarding these changes.
Determine steps to demonstrate that changes in process have been implemented across sites and with partners.

d. The overall number of planners relative to the demand for plans Our experience is that families with children requiring plans are experiencing significant delays to receive an outcome; and more and more plans are being issued with short time frames (as little as 3 months) meaning that families are often still trying to access services in their plan when it then expires, and they have to start the process again.

Therapy intervention – especially with young children – needs to start early and not be disrupted. Often families are waiting 6-8 weeks for access to a service and then with less than 2-4 weeks of support being asked to start planning again.

In the interim their therapy place is lost, and the waiting starts again. Waitlists for service in parts of Australia can be 2 years or more. Wait times to receive first plans are measured in months. Plan gaps are becoming problematic again as staffing issues with partners mean that there are not enough planners available to conduct plan reviews as plans expire.

Suggestions

Families/participants to complete initial submission online; approval done online for less complex submissions
There should be absolutely no delays in early intervention plans and nothing less than 12 months issued
Plans should not trigger commencement until first services are accessed
A real commitment to workforce strategies within partners and therapy providers.
Follow-up of inquiry recommendations to assess NDIA responsiveness to inquiry recommendations.
Reduced stress in the role of the planner would result in less staff turnover and more planners available to meet demands. Stress for planners would be reduced if they had more support and training, and if NDIA were not able to over-ride their best efforts at delivering a reasonable and necessary budget for participants.
Reduce time delays for urgent funding reviews/service gaps e. Participant involvement in planning processes and the efficacy of introducing draft plans When participants enter the NDIS, they go through a planning process to determine the reasonable supports they need. They then receive a plan that contains funding for them to purchase supports from providers of their choice. One widely criticised element of the process is that participants are not given an opportunity to view a draft of their plan before it is finalised.

This means the participant does not have an opportunity to correct any errors or misrepresentations in the plan. The first time they see their plan is after it has already been approved by the NDIA and if there are any errors, they must go through a similar planning process all over again.

Since ceasing phone plan reviews, participants report being engaged well in the planning process at plan review meetings. Requests by ECEI partners and LACs for progress reports from providers has resulted in a better informed and more collaborative plan review process.

Draft plans were a standard part of the plan review process during the trial-site phase in 2014-2016. Access to a draft plan was an effective step and allowed any misinterpretations or errors to be identified and resolved swiftly. Finalised plans often followed within days of draft plan release.

Suggestions

Participants should be given a draft plan to review with a set timeframe to respond
Effectiveness of draft plans has been proven and is proven to have little impact on the timeframe of delivering a finalised plan. Include draft plans as routine and standard operation in the plan review process.

f. The incidence, severity and impact of plan gaps Plan gaps have over the course of the past 6 years been of great concern and often a source of major disruption to children and families – impacting progress as well as being the main contributor to bad debt to providers (who try to minimise impact with continuity of care). A recent focus by LAC and ECEI partners on preventing them from occurring has been very effective. As staff shortages within any of these organisations occur, we see plan gaps reoccurring. NDIA has very recently introduced a new process of automatically extending the plan end date for plans expiring within 1 week. This is accompanied by the topping up funds remaining in the plan. We have already benefitted from this process and feel this is an effective step by NDIA to prevent plan gaps from occurring.

Gaps created by plans that are too short eg 3-6 months for intensive early intervention are counterproductive. Families often cannot commence a plan immediately (with waitlists or specific therapists time availability) and so just commence therapy before stopping; trying to get a new plan; and then having to re-engage with a provider. In the interim, progress is halted and children have to often start from scratch.

g. The reassessment process, including the incidence and impact of funding changes; The plan review is usually scheduled as the plan end date approaches and are usually held once every 12 months. Once a plan review is initiated, the next cycle of pre-planning and planning is commenced to develop the participant’s new plan. Individual assessments and therapy reports are reviewed for evidence of outcomes and may be requested to inform the review if not available. Issues are that a plan may expire before a review can be completed and has been predominantly due to participants being unable to be contacted or a delay in receiving requested information.

Suggestions

allow ability to extend plans in the case of young children and those with severe disability and allow for plan dates to roll forward until review completed (ie no gaps in service delivery).
if funding is to be cut or drastically reduced, a 3-month transition fund or run-off be provided so therapists can help set family up with supports such as transitioning to government (health) services.

h. The review process and means to streamline it When a plan does go wrong, participants can request an internal review. This triggers the creation of a whole new plan, as plans cannot be adjusted, only replaced.

The delay between the initial plan and the review can be anywhere from a few days to a few months. Lengthy review times put everyone in a tricky position. Participants can be unsure whether to continue with existing supports or stop altogether. Providers are forced to decide whether to proceed with a service and risk not getting paid.

The NDIA have worked to implement changes to streamline the review process. This has included such things as “like for like” AT requests. Whilst widely dispersed, knowledge of “like for like” is not embedded in partners and full reports for all AT requests continue to be required, including “like for like” items. There continues to be a disparity between upper management NDIA initiatives and on the ground processes. NDIA partners have been requesting progress reports from providers, reinforcing to participants the value of this information to inform a new plan. This step has been welcomed and appreciated by providers.

In instances where the provider has not been informed of the plan review or where assumption that “like for like” AT items do not require a report, the provider is required to produce multiple reports

at short notice. Where the partner is not prepared to wait for this report from the provider, a new plan is executed that does not include essential items or services. This leads to either a plan review request or an AAT incident.

Suggestions

Allow for plan amendments
Outline steps to demonstrate that changes in process have been communicated and implemented across sites and with partners.
Planners to allow suitable time for reports requested from providers as a result of the plan review meeting with the participant
Plan changes/funding to be communicated to partners and plan managers i. The incidence of appeals to the AAT and possible measures to reduce the number; The ‘middleman’/ multiple parties involved in final plan approval continues to cause issues (see case study A). Any understanding obtained by a planner of individual needs is undone by restrictive internal decision-making matrix and normatives. NDIA staff ceasing communication once they have made a decision rather than continue discussion with participant +/- their team, also leaves the participant no choice but to approach the AAT.

Suggestions

Participants should be given a draft plan to review with a set timeframe to respond
Where documentation has been provided for initial plan (and ignored) the process should be streamlined, and plans revert to recommendations rather than formal AAT
Remove the middleman at NDIA for final plan approval.
NDIA staff to continue communication with the family and their team at plan approval until either all agree on the plan or further action for the plan is established (referred higher).

j. The circumstances in which plans could be automatically rolled-over; The NDIS plan rightly belongs to the participant. It is their choice whether to share it with service providers or other supports in their life. However, for choice and control to work properly, participants need to be able to understand their plan and what to do with it. Unfortunately, plans have a language of their own. It may take participants a while to understand what they have been funded for, leading to a lot of confusion and delays. Moreover, providers are not always notified when a new NDIS plan takes effect. They must rely on their relationship with the participant to stay informed of changes that occur. This can lead to a range of problems including significant setbacks in getting the plan set up, invoices being reissued, service bookings and agreements being changed, and delays in payments and supports.

Fundamentally the advice being given to participants not to provide a copy of their plan to their provider is not sustainable. Providers are being expected to develop interventions and support without visibility on plans goals and funding. To be held accountable for outcomes; to deliver services (where plans may have expired etc) is not reasonable.

People with severe disability and with conditions unlikely to change should have longer duration (3-5 year) plans; and /or elements of their plan sustaining (eg needing daily showering).

Suggestions

A checklist asking: any health changes, any family changes, any new AT needed could help identify if a plan could be automatically rolled over or which components of the plan can be automatically rolled over and perhaps a “light-touch” review process for the other plan components.
Plans must be shared with providers to ensure accurate and timely service delivery within budget to meet goals and outcomes

k. The circumstances in which longer plans could be introduced The risk in having a longer plan is if circumstances change or assistive technology is required mid plan, rendering the current plan no longer sufficient. If a light-touch review to add assistive technology is possible, or if change of circumstances reviews are responsive and timely, then we suspect all plans could be for 2 or 3 year durations. This would free up resources; enable longer term goals to be achieved and reduce uncertainty for participants and providers.

Suggestions

Complex and permanent disability cases should be extended to 3+ years and have a 12 month review point (online only) ie if nothing has changed
In medically stable individuals and at certain ages/life stages a longer plan could be warranted
The core support component of plans could be much longer term eg people with severe disability needing daily showering/dressing/feeding; while the independence/social supports/therapy component of plans could be more variable. Long term plans for people in residential living would also enable greater investment in SDA with better financial stability and create better long term living solutions for individuals

l. The adequacy of the planning process for rural and regional participants Planning needs to be flexible in its approach and in the formulation of the rules that are applied when dealing with people with disability, their families and carers, particularly when they are in rural or remote areas. A one size fits all policy for implementing the NDIS in rural and remote areas should be rejected and the particular needs of different regions across Australia should be paramount.

Our current experience supporting people in remote indigenous communities (NT) shows that the short term focus on costs and asking us to quote (and compete with other providers) every time we need to visit a community is counterproductive; does not allow us to build relationships we need (critical with indigenous clients to establish trust); and does not allow for continuity of service. Establishing and funding regular charter flights (block funded) would allow providers to book regularly in community and ensure all people needing supports received them.

Suggestions:

Solution to the workforce challenge is the training of locals (including families) to provide non-professional support to people living with a disability. The family member would need ongoing support, perhaps provided at a distance.
Travel issues need to be addressed (for family or provider) – including funding regular flights to remote community
Training and support be provided to enable local community partners to come into therapy settings and take skills back with them

m. Any other related matters. Not being provided with a Plan Participants are continuing to be told by NDIA that they do not need to provide a copy of their plan to us as their provider. This means we are being expected to develop a therapy plan and intervention aligned with their goals (and budget) without visibility on either. We have made a decision that this is not possible and so we work with families to encourage them to share their plans. Having to be responsible for goal outcome delivery (and deliver a service within a sustainable funding envelope) we believe requires full transparency on plans.

There are already major issues with families not understanding their plan (eg previously discussed issues between core support money and capacity building) and without information we cannot assist. There are also issues with plans changing; funding being allocated to another service provider and no communication on plan changes that end up impacting services and or payment for services. Critical information such as plan end dates also needs to be captured in our systems to ensure tracking and reporting timelines are met.

By telling families they don’t need to share this information it creates conflict and confusion.

Inconsistency

We have been able to compare what one participant has had approved for a recommended treatment and frequency of treatment to what another participant who has been approved to achieve the same or substantially similar clinical outcomes, and there are obvious and large variances. In early intervention therapy services, we see plans with significant core funding provided, but with very little funding allocated for therapy services.

Evidence demonstrates that early intervention for children, that is intense and of a substantiative length of time has significant positive outcomes. Plan variances are as much as 4x for a child of the same age with similar goals and needs. This translates to some children receiving as little as 1 hour a month of therapy vs those receiving 3-4 times a week. There is no evidence at all to support sporadic therapy intervention and it is unlikely positive outcomes can be achieved with this approach.

It is evident now on spend for autism that a small amount is being spent on young children and this increases 4 x as they approach adulthood. This is the wrong approach and is not consistent with the principles of an insurance scheme designed to support the right interventions in early childhood to prevent the need for lifetime support. (see NDIA graph of increased costs over age ranges)

Not recognising skills and qualifications There is also an increasing trend for planners and partners to be telling families to ‘stretch their money’ by using non-qualified therapy assistants rather than seeing an experienced clinician. This ignores the complexity of need; the skills attained through higher university qualification and work experience and the fact that allied health assistants must be supervised to deliver services. It is not acceptable to tell families the services are the same; it would be aligned with saying you don’t need to see a Dr but the technician in the medical practice can do the same job.

IN SUMMARY

Ensure greater training and expertise of planners and partners
Listen to specialist expertise and advice
Focus on individual needs, choice and control – not formulas and averages
Aim for consistency
Don’t trigger plans until services start, ensuring timelines and supports make sense
Cease very short plans (3-6 months) which cause stress to families and always result in service disruption
Avoid plan gaps
Provide draft plans to families
Focus on capacity building and the right investment early – not short-term costs savings which will impact costs long term and the ability of individuals to achieve their goals
Use clearer assessments and focus on evidence-based service delivery and recommendations
Allow adequate time to manage complex clients (including time for non face to face supports)
Ensure plans are being shared with providers (and plan managers) to enable transparency and commitment to outcomes and timelines
Planner who is an allied health professional results in a good plan recommendation
Automatically extending plan end dates to avoid plan gaps is effective
Allowing billing for non F2F time is welcome
2 – 3 year plans could be implemented if a “light touch” review is available We welcome the opportunity to meet and discuss the suggestions and recommendations further to assist the Agency develop a robust and easy to navigate system for children and families

Julie Carr

Chief Executive Officer

Early Start Australia

5 September 2019