Submission 43 — Victorian Autism Specific Early Learning and Care Centre — Provision of services under the NDIS Early Childhood Early Intervention Approach | External submission

Victorian Autism Specific Early Learning and Care Centre (ASELCC)

Submission to the

JOINT STANDING COMMITTEE ON THE

NATIONAL DISABILITY INSURANCE SCHEME

b) The service needs of NDIS participants receiving support under the ECEI pathway; Many families have reported that their NDIS planner had poor knowledge of ASD and lacked sympathetic communication when discussing sensitive issues. One parent reported that when discussing the required supports for their child, their NDIS planner stated that the NDIA “are not a bottomless pit of money”. Families of participants with ASD receiving support under the ECEI pathway are usually in the early stages of diagnosis, and are often grieving and vulnerable. Roberts and Williams (2016) highlight that at the time that their child is diagnosed, parents know the least about ASD, their child’s strengths and difficulties, the quality and availability of services and what their child’s intervention needs are. Families require NDIS planners to be knowledgeable and sensitive about ASD and the available services.

As per the guidelines in the report prepared by Roberts and Williams (2016) for the NDIA, it is recommended that all children with ASD receive 15-25 hours per week of a comprehensive intervention for at least one year. Families have reported that their NDIS planners have had limited understanding of this recommendation. Some families have been discouraged by their planner from applying for funding for evidence-based intensive intervention. One family reported that while their planner requested that they use a general term instead of ‘ABA’ during plan discussions, other families used the term ‘ABA’ and received greater amounts of funding to cover the costs of their therapy. Another family stated “it is all very confusing when you hear different things from different parents saying it all came down to the assessment officer.” In addition, families have reported that planners lack knowledge about other the services or funding available. In order to develop effective plans,

planners need to have a comprehensive understanding of the guidelines for evidence-based supports for children with ASD and the existing supports/funding that is available.

Families have been advised their child is required to be present at the planning meeting, however the purpose of their child’s presence has often not been explained. Families have reported concerns about this for two main reasons; 1) that the planner (often with limited understanding of ASD) may be making an assessment of their child’s needs based on their presentation at the planning meeting rather than referring to the reports provided by experienced practitioners and 2) that discussing their child’s challenges at length whilst they are present is disrespectful and may cause their child distress. Families need to be provided with a clear explanation as to the purpose of their child’s presence at the planning meeting.

Many families have expressed concerns about the advocacy skills required during NDIS planning meeting. During the early stages of diagnosis and intervention, families are often unsure of what they need and require support to be able to advocate for their child. One family stated “I am concerned about what they will approve in terms of early intervention care for XX as I wouldn’t even know what I need to apply for and what he is entitled to”. While families that are well-educated and knowledgeable about ASD and evidence-based interventions may be able to effectively develop an outline of the supports that their child requires, other families have limited knowledge about ASD, evidence-based intervention and the NDIS. Many of these families have received smaller funding packages due to their compromised ability to advocate for their child’s needs. Families require support to understand their child’s needs and to advocate for funding to enable them to access the supports that they require.

c) the timeframe in receiving services under the ECEI pathway The timeframe that participants receive services has been much delayed and inadequate to meeting their needs, with most families reporting significant delays at multiple stages of the process. Families have reported long delays from NDIA representatives to respond to their general queries, application, request for planning meeting, and plan approval, ranging from 2 weeks to 8 months. Not only have most families experienced unacceptable delays in accessing NDIS funding but unable to access HCWA funding in some areas (such as Geelong where the NDIS has been rolled out for 4 years) in the meantime. Additionally, the striking variation in NDIS planners’ knowledge of typical development and disabilities such as autism spectrum disorder, available services and the early childhood intervention sector, as well as a poor level of training and information about understanding and navigating the NDIS system is a consistent barrier to ECEI participants receiving timely services. This means that the critical time of neurological plasticity in early childhood (particularly developmental age range of 12 18 months when language is emerging) is not optimised with individualised and evidence-based interventions and supports (well established in the scientific literature of human development).

Additional timeframe delays to ECEI participants receiving services include:  Families who chose to self-manage their child’s NDIS plan receiving no information to help them learn how to access services or agencies independently  Few appropriate services available in the local area

 Over-priced services that exclude many families based on the approved supports in the ECEI participant’s NDIS plan  Extensive waiting lists for services (e.g., one family was informed that the social skills group through their early childhood intervention service provider will have no vacancies for at least the remainder of 2017)  Inconsistent information from the NDIS planner or other NDIA representatives about the process of apply for equipment (such as a communication device) and which organisation to contact  Extensive time periods that families spend waiting to contact an NDIA representative via email or telephone, and the associated costs.

d) the adequacy of funding for services under the ECEI pathway The funding ECEI participants with autism have received does not align with evidence-based practice. The NDIS publication, Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers (Roberts and Williams, 2016), recommends 15-25 hours per week of evidence based, early intervention for children with autism. However, thus far, NDIS Plans have only supported such intensity for children who are severely impaired. Children with mild-moderate autism have received limited funding and do not enable them to access the recommended intensity of intervention. In addition, the evidence based intervention approach we provide as an ECEI service provider, the Early Start Denver Model (Rogers and Dawson, 2010), has seen children with more advanced skills in functional use of objects, goal understanding and imitation made the best developmental gains (Vivanti, Dissanayake, Zierhut and Rogers, 2012). Thus, it is imperative that ECEI participants with mild-moderate autism receive adequate funding to access evidenced based intervention at the recommended intensity.

Secondly, the funding ECEI participants with autism have received has varied depending on parental competence and advocacy skills. Parents of ECEI participants who have conducted research in the field of autism, identified relevant goals for their child and sourced evidenced based intervention, have obtained higher funded NDIS Plans for their child. In contrast, ECEI participants from vulnerable families are at significant risk of receiving inferior NDIS Plans. Establishing and funding advocacy support services for ECEI participants from vulnerable families is an essential safeguarding framework that must be built into the NDIS.

e) the costs associated with ECEI services, including costs in relation to initial diagnosis and testing for potential ECEI participants

Costs accessing ECEI/NDIS

Our experience has largely been with children entering directly into the NDIS, as former ECIS participants with a formal diagnosis of autism. We are very aware that formal diagnosis adds strength to an application for funding, and is likely to speed up access to the NDIS. Accessing a diagnosis, or even a functional assessment to establish intervention goals, can be very difficult for

families on low incomes and with limited health literacy and capacity to advocate for their child/ren. Best practice in these assessments involves multiple professionals, assessing over multiple sessions and settings (Autism CRC Report, Jan 2016 (and pending national guideline on ASD assessment). Clinicians completing these assessments should use a range of (expensive) assessment tools and experience: cheaper options consistently take less time, and are less comprehensive, often failing to investigate for the many possible conditions that might result in autistic symptoms. Families often report feeling pressured to source a private assessment team, at great cost, to get a diagnosis and access the funding they need.

Costs of NDIS service provision

From a provider’s perspective, the NDIS Price Guide rates are often inadequate to cover the true costs of flexible, quality service provision. They do not allow for the necessary overheads of a well coordinated (transdisciplinary) service, or for the reality of families who have multiple and complex needs, and have difficulty consistently attending sessions. We provide a, intensive centre-based, group intervention program for young children. We can not charge families for whole days they do not attend, which happens reasonably often due to illness, other family commitments etc (close to 10% on average across different families): there is no buffer in the price guide to allow for this. It is not feasible to bring another child into this kind of service temporarily to fill a place while another enrolled child is away on holiday. We are now able to charge for some travel time, beyond 10km. In a metropolitan area, a short trip to visit a child at home can take considerable time, and this 10km buffer impacts on the sustainability of providing a home-based program under the current price guide, despite making use of therapy assistants and communicating via Skype when possible to keep costs down. Hourly rates across various interventions were not (for the most part) increased this financial year, despite an enormous amount of feedback from services that they are inadequate.

f) the evidence of the effectiveness of the ECEI Approach Evidence of which children respond to which interventions is building. While the NDIA funded Roberts & Williams’ (2016) recommendations to guide funding and intervention practice, these recommendations are rarely followed. We have been relieved to see some children receiving enough funding to access our intensive, naturalistic, evidence-based group intervention program, but we have the following concerns:

children with most severe autistic symptoms and developmental delay are most likely to receive this level of funding
children with less severe symptoms are still at risk of significant impairment and this is not reflected in their plans
children who respond most to our program are actually not the most severely affected. Children in the “moderate” range seem to benefit most, research currently under way at La Trobe hopes to determine other predictors of “what works for whom?”. Projects like this desperately need funding to work towards methods to identify which techniques/settings are likely to be most effective for specific children!

Under our block funding, we are able to prioritise access according to broad social needs, as well as to those children/families likely to benefit most from our program. We are concerned that, under the NDIS, we will have a narrow range of children with “severe” autistic symptoms and developmental delay, and no longer the mix of children with different profiles that we currently have. We may have children who are (a) not those most likely to benefit and (b) have less opportunity to learn from their peers in this intensive, group-based intervention program. A program like this is at risk of becoming less effective as a result, and children who could make most gains are likely to miss out.

g) the robustness of the data required to identify and deliver services to participants under the

ECEI

The Pediatric Evaluation of Disability Inventory (PEDI-CAT) is utilised to determine the level of support that participants in the ECEI pathway require. Families have reported that they have been required to respond to this questionnaire, however it has been unclear whether they were responding to the PEDI-CAT or PEDI-CAT (ASD). Using the PEDI-CAT, despite having significant impairments, children with ASD may score as requiring little support due to being young and physically mobile. Families have expressed concerns that they were asked to answer questions based on the skills that their child could or could not physically perform rather than on the skills that their child functionally uses in everyday life. For example, a child may be physically able to put their socks on, however may not perform this skill during daily routines. Given that children with ASD can often have challenges with using skills functionally, questions should be answered on the basis of what children consistently do rather than what they are physically able to do. The PEDI-CAT (ASD) is likely measure this in a more sensitive way.

Due to the heterogeneity of ASD, no single intervention will be effective for all children with autism. Therefore, it is important that the outcomes of intervention for each individual child are evaluated to ensure that the intervention continues to meet their needs. Families have reported that it has been unclear how their child’s progress will be reviewed. Despite the recommendation by Roberts and Williams (2016) that planners require professional development to understand how to create and review plans effectively, families have reported that their planners have appeared to have inadequate knowledge to conduct these tasks. Service providers also need to be clear on how children’s progress will be reviewed so that the appropriate information can be collated and presented at NDIS review meetings. Additional funding may be required to enable such assessment to be conducted.

h) the adequacy of information for potential ECEI participants and other stakeholders The dissemination of information to potential ECEI participants and ECEI service providers has been inadequate, confusing and inaccessible to families, especially vulnerable families. The NDIS would benefit from a stronger community engagement program to ensure a smoother transition for potential ECEI participants and ECEI service providers.

The NDIS website, the base-camp of information for potential ECEI participants and ECEI service providers, is extremely difficult to navigate. Parents of potential ECEI participants have expressed feeling overwhelmed by the breath of information available on the NDIS website and have been unable to seek clarification from their existing service provider. The difficultly of obtaining relevant information on the NDIS website is experienced by parents with strong advocacy skills and vulnerable parents. For example, parents with strong advocacy skills have been unable to locate key legislative and regulatory documents in preparation for their first planning meeting, such as, what supports are considered ‘reasonable and necessary’. The wealth of information, as well as the type of information on the NDIS website, is inappropriate for vulnerable families. In addition, rural and remote families without reliable internet access may experience difficulty obtaining the information required on the NDIS website.

The large-scale nature of the social reform ensures that policies and procedures are constantly changing. As an ECEI Service Provider, we have found it difficult to maintain an understanding of the every-changing legislative and regulatory frameworks. We would benefit from regular communication from the NDIA regarding legislative changes to ensure we continue to practice within the NDIS Guidelines. For example, our primary service was claimed under ‘Transdisciplinary early childhood intervention’, a support item in the 2016/2017 NDIS Price Guide. We were not notified, via NDIS newsletter or via the NDIA, that this support item was no longer available in the 2017/2018 NDIS Price Guide.

i) the accessibility of the ECEI Approach, including in rural and remote areas The inclusion of ‘Travel in ECEI’ was a welcome addition to the 2016/2018 NDIS Price Guide. The inclusion of up to $3000 per annum will enable ECEI service providers to travel to ECEI participants in rural and remote areas, however, it is limited to 17hours. It does not support the intensity of intervention recommended in the NDIS publication, Autism spectrum disorder: Evidence based/evidence-informed good practice for supports provided to preschool children, their families and carers (Roberts and Williams, 2016). The publication recommends 15-25 hours per week of evidenced based, early intervention for children with autism and the travel time does not allow children with autism in rural and remote areas to access the recommended intensity.

In contrast, ECEI service providers have to incur the cost of travel time less than 10km. In metropolitan regions, such as Melbourne city, a therapist can spend 30-60minutes travelling 10km. To ensure consistency between rural, remote and metropolitan ECEI service providers, it would appear more equitable for travel to be based on time travelled (rather than distance).

j) the principle of choice of ECEI providers The funding that ECEI participants have received does not align with evidence-based practice and limits the choices available to families. The NDIS publication “Autism spectrum disorder: Evidence based/evidence-informed good practice for supports provided to preschool children, their families and carers” (Roberts and Williams, 2016), recommends 15-25 hours per week of evidence based, early

intervention for children with autism. However, thus far, NDIS plans for families that we work with have only provided for this baseline level of intensity for children with very significant impairments.

There are numerous factors limiting families’ ability to exercise the NDIS principle of choice:

Limited range of service providers that provide the type and/or intensity of intervention or support the participant requires
Extensive waiting times to access services
Limited providers within families’ local area
Drastically different NDIS plans for children with similar needs and challenges, depending on the assigned NDIS planner and the family’s knowledge of the NDIS and advocacy skills
Some NDIS planners telling families that arbitrary supports or services are not approved by NDIA and refusing to include them on the proposed plan for review, which should be based on how reasonable and necessary the item is for that particular participant based on the family’s gathered evidence o Case example: no incontinence related equipment for children under 5 years, transportation hours capped at 18 hours per year, no iPads, and no childcare for a toddler-aged sibling of the participant to enable the parent to take the participant to required therapies
Some NDIS planners placing arbitrary limits on the number of goals that families can include in their plan, contrary to information on the NDIS website https://www.ndis.gov.au/document/developing-your-ndis-plan, thereby limiting families’ choice of service providers
Only recently beginning to approve plans for evidence-based interventions for young children with autism, such as early intensive behavioural interventions of Applied

Behaviour Analysis and the Early Start Denver Model

o Such plans have only been approved for children who have substantial/severe symptoms and level of impairment, and would likely benefit more from an individual adult-child therapy context compared to a peer-group therapy context, such as at Vic ASELCC o Children with autism categorised as “high-functioning” or who can access some of their skills in some contexts should not be excluded from evidence-based intervention, especially as investing in this critical period of early childhood will likely reduce their use of NDIS in future years.

Thank you for considering the submission above. We also note that an inquiry into autism across the NDIS is desperately needed.

The Victorian Autism Specific Early Learning and Care Centre (ASELCC) Team

Thank you for considering the following comments and submissions from parents involved in our early intervention program: Victorian Autism Specific Early Learning and Care Centre (ASELCC).

We also note that an inquiry into autism across the NDIS is desperately needed.

PARENT 1

I am concerned about waiting till March 2018 for NDIS to become available (if it does on time) in Hume council area as Sam’s HCWAF is almost depleted. I am also concerned about what they will approve in terms of early intervention care for Sam as I wouldn’t even know what I need to apply for and what he is entitled to. It is all very confusing when you hear different things from different parents saying it all came down to the assessment officer. There needs to be consideration for past therapies as well as future needs for each individual child. eg. Sam is currently getting at least 15 hours early intervention with La Trobe, plus fortnightly speech and fortnightly psych starting this Friday (new keyworker from ECIS). I fear that NDIS will not be able to meet half of the current therapy quantity Sam is currently receiving. We should be able to apply for early access if our child’s other funding is running out (If this is already an option, would love to know lol).

PARENT 2

Timeline from acceptance into NDIS to having a plan approved was approximately 7 weeks. This is with me contacting the NDIS every day, via both phone and email. Staff were not aware of rules around HCWA eligibility in an NDIS zone. Also contacted members of parliament.

Took a week from day of planning meeting to be told that our child’s plan had been approved. Was another week for the funding to be accessible. I was told the plan was approved but given no details. Found out amounts etc by phoning the call centre.

Funding was not enough to cover everything we needed. Items we specifically asked for (such as a communication device) and were verbally given funding for were not included in the plan. Planner was not up to date with the process for applying for equipment (for example, kept telling us that SWEP would be involved in the process, when Yooralla deals with communication devices). We had to cut therapies to make the funding we had last. We are still going to run out before review, and are having to obtain loans to bridge the gap. We were also given a 6 month plan, however we have the same reporting requirements as a 12 month plan. This eats into our time and funding.

We already had therapies in place before the planning meeting, so we elected to go with our therapists, rather than go through ECIS. NDIS were fine with this. However, in Geelong some plan reviews are now being conducted by LACs (local area coordinators), who are contracted by NDIS, and who also offer ECIS style services, I’m not sure how that will affect our child’s plan in the future. We have got a great team around our child, and don’t want to lose them.

There are very little services in our area for non-verbal children under 5, and we are currently priced out of those that do exist. We are hopeful at plan review that we will be granted some funding that will allow us to access them. We were granted a relatively high level of support in the form of Speech Pathology, Psychology and Occupational Therapy, but little funding implement therapies (such as ABA, ESDM).

We have to travel out of area to find some professionals, as there are none in our region capable of providing the level/type of support needed. We currently cover all our travel costs, as we were not advised in the meeting the NDIS could assist with this. They did not volunteer any information about supports that could be offered to us.

What we need from the NDIS is for them to stop seeing spending on our child as a burden to be minimised, and instead see it as an investment in our child and his future. Adequate funding now will help us get the level of assistance he needs, which will give him his best chance of integrating into society. Spending money on therapies now will hopefully reduce the level of funding required in the long term.

PARENT 3

“What do you need from the NDIS?”

Sufficient funds to use on therapy and resources that will see gains in my child’s development and will make aspects of our daily living easier. A transparent criteria for accruing $X. Why is there tens of thousands of dollars in variance between family’s levels of funding for children of the same age and very similar needs?

“Does the NDIS meet your child’s needs at the moment?”

No. Accessing one hour of professional assistance a week with our funding when my child needs 15-25hrs does not cut it.

“How long have you had to wait to access services?”

7 months “Are you able to access the supports that your child needs?”
This year, yes. Next year, no. Other points:
The inequity surrounding those who got HACWA funding just before NDIS rolled out in their area. They are $12000 better off.
They also need an app for the “My Place” portal.
They need more staff on their phones.

PARENT 4

Our experience with the NDIS has been really poor. I think the main reason is because it’s brand new, but if it wasn’t for ASELCC, and private therapy, our child would only be accessing services now.

We applied for The NDIS funding in September 2016, just as it was being rolled out, and it wasn’t until Feb 2017 that we heard back, and a planning meeting wasn’t able to be arranged until April. Her plan was approved in May, for 39 hours, or $6900, which is woefully inadequate for what she needs. An appeal was rejected.

I arranged to have a meeting at Kalparrin, to discuss therapy, which was a 4 week wait, and we decided on Keyworker, Speech and a Social Skills group for the remainder of our 12 months. There are no vacancies in the Social skills group, so she can’t access that until MAYBE next year. And we

have enough in our NDIS budget for three weekly speech for 12 months. No information was provided to me about where to access services or Agency’s once I decided to self-manage.

Next year, I will have to pay for private therapy (OT, speech and psych) to supplement funded therapy if we have the same amount. It’s a real shame for families that haven’t been as lucky as us to get a place in your wonderful program (which had been truly life-changing for all of us), and can’t afford private therapy, as the intervention certainly won’t be early or sufficient, based on our experience.

PARENT 5

Planning Meeting Issues Identified

Family were informed that no more than 7 goals could be created for a child’s plan. The family was forced to consolidate the numerous goals that they had identified for their child into 7; while still attempting to ensure that each item of funding requested was appropriately linked to one of the 7 goals identified.
Family were informed by their planner that certain items requested at the planning meeting simply wouldn’t be funded by the NDIA because ‘they just don’t’ and so there was no point in submitting them in the planning application. This was despite the family feeling that they had provided evidence that the funding items requested were reasonable and necessary supports for their child and would support the child in achieving their goals. If these restrictions on funding are based on the NDIA’s operational guidelines/pricing guides or policies as to what they consider will amount to a ‘reasonable and necessary’ support, such information ought to be readily available to the public on the website. Or better still, provided to families prior to their planning meeting.

More importantly however, the specific concern expressed by the family in question was that certain funding items requested appeared to be characterised by the planner as automatically excluded items from the scheme (that is, legislatively or by regulation). Rather than the requested items being items over which the NDIA has issued an operational guideline or policy about, based on the NDIA’s view of the reasonableness or necessity of the item. Planners could benefit from further training to ensure that families are informed that all funding requests will be considered on their merits in accordance with the legislative and regulatory framework, based on the needs of each individual. The examples provided by the family in question included ‘no incontinence related equipment for children under 5’, transportation hours capped at 18 hours per year, ‘no Ipads’ and no childcare for a toddler aged sibling of the participant to enable the parent to take their child to required therapies.

Family also reported concern about the lack of tact and sympathetic communication shown by the planner particularly in view of a comment made by the planner in the planning meeting that the NDIA “are not a bottomless pit of money!”.
Family were informed prior to their planning meeting that their child must be present at the planning meeting, despite there being no legislative or regulatory requirement for this. The family had two concerns about this. One being the distress and other undesirable impacts that discussing their child’s difficulties at length in their presence could have on their child. The second concern was the lack of clarity provided as to the purpose of the child’s presence at the meeting. The family had provided reports from their treating practitioners to document the child’s condition and funding requirements. It is concerning if the presence of a child at a planning meeting is being requested with a view to the planner (who lacks knowledge of the child and may also lack expertise) making an assessment of the child’s needs for support, over and above the recommendations of a child’s treating practitioners.

In this instance the family was able to express their desire for the meeting to occur in the absence of the child and this was ultimately accepted by the planner; however not all families may feel confident in advocating in this way. Clearer information needs to be provided to all families as to whether the presence of the child at the planning meeting is a requirement or an option. Furthermore, if this is a requirement, then the purpose for their presence needs to be clearly expressed.

At the conclusion of the planning meeting the family requested a copy of what would be provided by the planner (that is, the proposed plan) through to the Agency for funding consideration (ie the proposed plan). The family were told by the planner that “we don’t do that”. Families should be able to review the proposed plan prior to submission to the NDIA to ensure that all funding items they have requested are included. To do otherwise may increase the likelihood of plan reviews and appeals once the NDIA approves a planning package.
Family expressed concern that certain questions were asked at the planning meeting and the planner insisted that the only options for responses were “yes” or “no”. The example given was a question as to whether the child can “tell you what he/she wants”. The parents tried to explain that their daughter’s condition was more complex than that and they would prefer to provide a comment rather than a simplistic “yes or no” answer. They were told by the planner that the question was compulsory and only a yes or no answer could be provided. There were other similar questions and the parents were concerned that by being confined to a yes or no answer meant that they could not accurately describe the condition and needs of their child.
Paediatric Evaluation of Disability Inventory (PEDI-CAT) – The family was asked to respond to this questionnaire. They were unsure whether it was the PEDI-CAT or PEDI-CAT (ASD) which they were responding to. (Presumably the latter is preferable and should be used by planners where a diagnosis of ASD is made as it has been modified to reflect the unique needs and strengths of children and youth with Autism (Kramer J, et al, 2012)).

The family were told by the planner that the Agency would use the responses to determine the child’s funding needs. The family were told to answer the questions based on what their child physically could or couldn’t do and not whether they will or won’t perform the activity in question. The child in question presents with strong features of Pathological Demand Avoidance and while physically capable in some circumstances of completing activities, due to the condition often requires significant prompting and other adult interventions to complete many activities. The family were concerned that being confined to answer the questions on the child’s physical capacity alone would fail to reveal the very real need for significant supports and interventions for the child in certain daily functions. The family subsequently learnt from their own research that the PEDI-CAT (ASD) provides specific guidance that in responding to PEDI-CAT (ASD) questions “help” includes ‘physical assistance, verbal prompts and other cues’. The family was concerned that the planner was not sufficiently trained to explain the basis on which PEDI questions should be answered and therefore the responses may have portrayed an inaccurate picture of the child’s need for certain supports.