JOINT STANDING COMMITTEE ON THE NATIONAL
DISABILITY INSURANCE SCHEME
Submission from:
Scope (Aust) Ltd
Level 2, 302 Burwood Rd Hawthorn, VIC, 3122
About Scope
Scope (Aust) Ltd (“Scope”) is a leading provider of services to people with disability in Victoria, and one of the largest not-for-profit organisations in Australia. Our origins stretch back to 1948, when a group of parents who wanted better lives and opportunities for their children with disability established the Spastic Children’s Society of Victoria.
Scope’s mission is to enable each person we support to live as an empowered and equal citizen.
Scope provides services including therapy, supported independent living and individual support across metropolitan and regional Victoria. We also work with corporate and community organisations to improve inclusiveness for people with disability. As a major provider of early childhood intervention services across metropolitan, regional and rural areas, Scope currently assists over 1,000 children and their families.
The early years are a core component of our organisation’s services, and we are committed to ensuring that our early childhood intervention services reflect current best practice. We adopt a family-centred, strengths-based approach in supporting families and children, with our service model guided by the significant evidence base for effective early childhood intervention services.
Overview
Scope is a strong supporter of the National Disability Insurance Scheme (NDIS). We embrace the benefits the NDIS brings to our customers and actively contribute to its success. We welcome the opportunity to provide a submission to the Joint Standing Committee on the National Disability Insurance Scheme inquiry into NDIS Planning.
This submission provides a service-provider perspective on key issues with NDIS Planning as reported by our customers and noted by our managers and staff. We have chosen to focus our response on participants in the early years. Throughout the submission, we have drawn on de-identified case studies and feedback from our customers; and such content is acknowledged as applicable.
While we have addressed some of the terms of reference this is done under three separate subheadings as follows:
- Disruption to the established service model
- Understanding and addressing complex needs
- Appropriateness of the planning process Finally, we have included recommendations for improvement at the conclusion of each the three sections.
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- Disruption to the established service model In Victoria, the transition from services funded by the Department of Health and Human Services and/or the Department of Education and Training to the NDIS, has been complicated by a shift away from the established Early Childhood Intervention (ECI) service model. Scope contends that this shift is largely attributable to a greater reliance on therapy treatments designed to address deficits, rather than on ECI. This has resulted in poorer outcomes for many children aged 0-6, including children who have been excluded from the NDIS owing to eligibility criteria that do not consider babies and toddlers at risk of developmental delay. The negative connotations of being associated with ‘disability’ has also deterred some families of children with developmental delay from seeking support.
NDIS Planners are responsible for developing plans that enable families to seek supports for their child with a disability or developmental delay. But the plans are not always developed by someone with sufficient expertise. Planning for children aged 0-6 should always be undertaken in collaboration with skilled ECI practitioners.
There are some Early Childhood Partners in Victoria who have little or no experience with ECI. Some of their planners do not understand the evidence in the reports that are presented to them; do not communicate their thinking to families; and do not communicate the outcomes that families should expect. Moreover, some Early Childhood Partners have limited knowledge of existing local referral/service support points and relationships that would facilitate a smoother process.
NDIS planning does not always foster a family-centred, strengths-based approach. There is often a focus on deficits and diagnoses. This can make navigating the NDIS even more arduous for families that may still be grieving while coming to terms with the nature of their child’s disability or developmental delay. For families from some cultures, where disability carries stigma, the situation may be even further intensified. Where ECI practitioners are involved, the process has nevertheless been slow, owing to the demand for their services.
Throughout 2018/19, as the last direct Department of Education funding has been allocated, a number of families have failed to make the transition to the NDIS, or have received inappropriate plans (see case studies below). This highlights flaws not only in the transition process, but under the in the NDIS approach to ECI going forward.
Scope believes that ECI should only be recommended or delivered by trained ECI practitioners. The Victorian Early Childhood Partners have varying levels of expertise and participants do not have access to a key worker model, which is an essential feature of best practice ECI, including access to a transdisciplinary team. There are currently at risk children being excluded from the NDIS through based on scheme eligibility rules, despite evidence that well-timed intervention for babies and toddlers can significantly modify the trajectory for this cohort.
In summary, the Early Childhood system that is evolving requires considerable refinement if the needs of children and their families are to be addressed. The elements in need of most urgent attention are as follows:
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Ensure NDIS planning for children aged 0-6 is always family-centred and strengths- based
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Address the shortage of ECI practitioners
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Substantiate that any therapy approved for children is in accordance with an evidence-based approach to ECI
Recommendation:
NDIS Planners need to be skilled in ECI or to partner with ECI practitioners. This may mean that planners establish closer working relationships with ECI providers to facilitate evidence based decision making.
- Understanding and addressing complex needs Scope is concerned about the level of attention that complex needs receive throughout the NDIS planning process, particularly for families that experience an interplay of individual, community and societal factors that diminish their quality of life. The continual fluctuation of one or more of these factors may seriously impede the capacity of families to exercise choice and control in NDIS planning.
The term ‘complex needs’ is not particularly well defined, or understood, and is often used interchangeably with ‘complex disability’. Complex needs arise from the interrelationships between individuals, environments and systems1-2 and often result from multiple and concomitant issues. Complex needs can include any combination of disability and physical health/ medical conditions, mental health problems, challenging behaviour, alcohol or drug issues3-4, contact with the criminal justice system, Aboriginal or Torres Strait Islander background, use of augmentative and alternative communication, a history of being placed in (or leaving) state care (i.e., child protection services5; there are large numbers of children with disability in out-of-home care6), homelessness or being at risk of homelessness.
The indication from Scope customers, is that those families with the resources and knowledge to negotiate the NDIS, receive plans that are more appropriate to their child’s needs; and families that experience disadvantage or dysfunction are worse off overall. For families with an in-depth understanding of child development, the universal health system, and avenues available to advocate for their children, their outcomes are even better. It is
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equally clear, however, that disadvantage and complex needs greatly compound the issues that some families have with NDIS planning.
Something as simple as having a suitable interpreter available during planning can be a critical factor in shaping the way that the final plan emerges, as illustrated in this case study:
Case study: Unworkable plan attributable to lack of interpreter
Abdel’s mother, who does not speak or read English, attended a NDIS planning meeting without the family’s key worker being advised. The key worker, who speaks the mother’s language, agreed to attend a follow up meeting organised at the family’s request. The family and key worker attended for the meeting, but the Early Childhood Partner did not have a record of the appointment, and advised the key worker that a self-managed plan had been developed. Abdel’s mother has no understanding of what self-management entails and has no computer literacy. The Early Childhood Partner asked the key worker to explain self management to the mother, but the key worker refused, noting that this is the responsibility of the NDIS. During subsequent discussions with the Early Childhood Partner, the key worker requested a review of the decision about self-management, then discovered the plan was already in place and ECIS funding had ceased. This was despite the family being unable to implement the plan.
When additional layers of complexity exist, as in the case study below, it would necessary for the Early Childhood Partners to take the time to consider how best to approach the planning process to strengthen longer term prospects for the families concerned. Unfortunately, in this instance, the attempted transition from ECIS to the NDIS has been abrupt and the family has been overlooked for the time being.
Case study: Complex needs a barrier to engaging with the planning process
Five year old Manuel has developmental delay, significant communication problems and probable intellectual disability. He is from a single parent family that has English as a second language and a history of family violence. Manuel’s mother is keen to engage in services, but has difficulty understanding the role of various supports in her life; and her communication can be disordered and difficult to comprehend. While she appreciates the impact of the various social factors on Manuel, she has not yet grasped the likely trajectory of his disability. Manuel was recently discharged from ECIS as he has started school and funding ceased 30 June 2019. A family support agency called the NDIA on the family’s behalf to be told Manuel was not known to the NDIA. This support agency is also working to discharge the family as the social issues are no longer significant enough for services to continue. Manuel’s key worker reported concerns about the mother’s ability to navigate and engage with the planning process without support from workers known to her.
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Recommendation:
The NDIS should acknowledge the impact of complex needs on families NDIS Planners need to take a more holistic view of the families with whom they engage.
- Appropriateness of the planning process Recent data from the NDIS7 reveals the highest rates of plan utilisation are among those aged 0-6 (64%), followed by those aged 7-14 (57%); these rates are notably higher than for participants in all other age groups, where utilisation of capacity building supports ranges between 45% and 51%.
Scope believes that the higher rate of plan utilisation among those aged 0-6 is mostly owing to families seeking therapies that are directed at “treating” an impairment for the purpose of a “cure”, rather than interdisciplinary ECI that focuses on capacity building. The increased number of single practitioner service instances, without the level of coordination that comes with interdisciplinary ECI, will increase levels of plan utilisation, but does not deliver the functional outcomes that mitigate or reduce impairment over time and enhance community inclusion.
The transition to school may also problematic as therapists often have little or no involvement in this process. Evidence clearly suggests that early intervention strategies decrease costs to schools and communities as children transition to school8. This is very different from what has previously been available to children through ECI from soon after birth where there is a disability diagnosis or suspected developmental delay.
Eligibility assessments are not always being completed by planners with the appropriate skills, resulting in many plans having gaps, and this carries through to the review process. Early childhood is a time when the brain is incredibly plastic, and ECI may reduce the need for reliance on additional supports later in life. It is also a time when pieces of the puzzle that about a child may emerge slowly, and plan reviews are not appropriate. The delays with getting plan reviews scheduled also means that plans expire and services are discontinued until the new plans are in place. In both of these instances, it may more appropriate to consider two year plans to reduce the stress on families about impending review meetings.
Scope is aware that many of the planning issues faced by families in metropolitan areas are replicated among families in regional and rural areas. But these issues are frequently exacerbated. The early childhood and allied health networks in rural and regional areas are sometimes very scattered or non-existent, and this has a direct effect on the level of supports available.
Scope has experienced long delays, including an inability to fill positions, and has invested significant resources into the recruitment of practitioners in rural and regional areas. Services available are limited and existing practitioners are aware of the pressures on them
7 COAG Disability Reform Council Quarterly Report, June 2019, p.42
8 Bruder, M.B. (2010), ‘Early childhood intervention: A promise to children and families for their future’, Exceptional Children, vol.76, no.3, pp.339-355
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to assist the many children waiting for services. The waiting times for some services in rural areas are now more than six months.
The case study below touches on a number of different issues, including: complex needs; the adequacy of planning for regional participants; and Aboriginality and the need for early, culturally-sensitive engagement.
Case study: Failure to engage Aboriginal key worker in planning
Geoffrey is a six year old Aboriginal boy with probable intellectual disability and anxiety living in a regional area. He is not yet known to the NDIA. He attended kindergarten for 10 days last year, and started school this year, although he has frequently been absent. There are several children in the family with intellectual disability, and a 12 month old sibling with delayed motor development not currently receiving any supports. Geoffrey’s mother has not engaged well with services in the past and does not answer calls from unknown numbers. She requires support with any paperwork. The key worker nevertheless developed a good relationship with the mother and contacted the Early Childhood Partner early with a view to facilitating culturally sensitive relationship-based engagement. The Early Childhood Partner deferred contact as Geoffrey was transitioning from ECIS, a defined program. This meant the opportunity to facilitate introductions and involve the family’s kinship network was lost. Following the withdrawal of ECIS funding the key worker no longer had a role and Geoffrey remains without supports.
Recommendation:
The review process needs to be simplified and more responsive to individual circumstances for those aged 0-6.
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