CONSIDERING THE SIGNIFICANCE of the legislative and policy reform involved, the Australian National Disability Insurance Scheme (NDIS) offered much promise to address the long-standing difficulties of a fragmented service system for people with disabilities across Australia (Bonyhady & Sykes, 2008). Jointly governed and funded by the Australian state and territory governments, the NDIS was designed to replace this system, and provide support to people with disability from birth to 65 years of age, their families, and carers. The enactment of the National Disability Insurance Scheme Act 2013 began with the creation of the National Disability Insurance Agency (NDIA), charged with the scheme's administration and funding of approximately 21 billion Australian dollars (Buckmaster, 2016a). A trial phase commenced in 2013 with the NDIS progressive implementation from July 2016, and roll-out due to be completed in June 2020 (Buckmaster & Clark, 2018). Three key pillars underpin the NDIS, namely (1) insurance approach, (2) choice and control, and (3) access to community and mainstream (Buckmaster, 2016b). Scheme participants receive direct funding and are encouraged to purchase their own services (NDIS, 2018); thus, consumers must understand, navigate, and source the markets of private and non-for-profit providers. Furthermore, the design of the scheme appears to assume a decision-making process more suitable for adults with disabilities (Howard, Blakemore, Johnston, Taylor, & Dibley, 2015). Understanding how this service conceptualization works for young children (birth to 6 years of age) with developmental delays and established disabilities (DD) and their families therefore warrants thoughtful consideration from three angles: (1) how it meets children's developmental needs on a timely fashion (Guralnick, 2019); (2) how parents exercise choice and control in selecting services for their children (Moore, Forster, & Bull, 2019); and (3) how children's family and everyday life contexts and adaptations, critical to optimal child developmental outcomes, are supported through the NDIS (Dunst & Espe-Sherwindt, 2017).
Historically, Australian Early Childhood Intervention (ECI) services were largely delivered by the state government except for the States of Victoria and New South Wales (NSW), which relied on non-for-profit ECI services. Consensus about what constitutes best ECI practices has existed for some time, but not in government policy and funding platforms, reflecting the absence of a national strategy for the delivery of ECI services (Sukkar, 2013). Nevertheless, commissioned by the NDIA, Early Childhood Intervention Australia (ECIA, 2016) developed a best practice framework to support the implementation of the NDIS' early childhood early intervention (ECEI) approach. The ECEI is available to all children aged 0–6 years who have a developmental delay or disability and their families/carers. These are supported in helping their children to develop the necessary skills to participate in everyday life (NDIS, 2019a). In the first instance, information about a step-by-step pathway is provided to families upon contact with the NDIA system. Families can then approach an ECEI partner organization in their locality who, with the family, will tailor support to the child's individual needs and circumstances. This may mean connecting the family with the most appropriate supports in their local area on a short-basis, or longer-term supports through the NDIS. It is at this latter point, depending on eligibility requirements, that an ECEI service provider may become involved with the family (NDIS, 2019b).
Considering the size and scale of the NDIS implementation, it was never thought it would be without its challenges (Buckmaster & Clark, 2019). These have been amply discussed and reported, ranging from the implications for the education of school-aged children with disabilities (Whitburn, Moss, & O'Mara, 2017) and the disability workforce (Baines & Macdonald, 2019), to questioning the capability of the NDIS in delivering the choice and control premise, especially for families who experience diminished resources (Malbon, Carey, & Meltzer, 2019). Fewer studies about how young children with disabilities and their families are faring under the ECEI approach are available. Notably, Howard et al. (2015) in their examination of family perspectives on the NDIS trail implementation in a regional area of NSW revealed difficulties in accessing the scheme, poor communication, and coordination in navigating self-managed services. Also, in a pilot NDIS roll-out site, Marchbank (2017) reported ECI administrators' workforce challenges in implementing the NDIS, and in using recommended ECI practices as implemented prior to the NDIS introduction. Similar concerns were reported by ECI service providers and families in NSW (Purcal, Hill, Meltzer, Boden, & Fisher, 2018). Recent anecdotal reports are consistent with those studies, indicating the persistence of those challenges in ECI service provision. In this context, gaining a greater understanding of families' lived experiences of the NDIS, its impact on their young children with DD, and more broadly on their everyday lives, can positively inform policy and practice improvements. Families' accounts are considered critical as active partners in the implementation of services (Turnbull et al., 2007), and as such must be taken into consideration in future NDIS reviews and refinements. Most importantly, because children younger than 18 years form almost half of the total number of recipients of funding (NDIS, 2019c), it is urgent to describe and understand barriers and enablers to ECI in the NDIS service context. The aim of the present study was therefore to examine the scheme's introduction with young children with DD, grounded in families' experiences of the ECEI implementation in the State of Victoria. Of specific interest was to explore families' journeys through this new service system path and understand the impact on their children, families, and themselves.
Most study participants were mothers (96%), aged between 31 and 53 years. Except for four parents, all were born in Australia. About one third of participants were employed outside of the home, working an average of 4 days a week. Participants' levels of education varied, ranging from high school diploma (n = 1), technical certificate or diploma (n = 5), university undergraduate degree (n = 9), to doctoral studies (n = 2). Participants' children with DD (14 males and 3 females) were aged between 2 years 2 months and 7 years 1 month (M = 53.05, SD = 20.07). Children's primary diagnoses included autism spectrum disorder (n = 12), global developmental delay (n = 4), cerebral palsy (n = 1), and language delay (n = 7). Three children had received diagnoses related to rare genetic disorders. Although all families had accessed the NDIS at the time of the study, 12 had experienced the state-based ECI system, whereas five families were altogether new to the disability system.
This qualitative study was part of a larger project investigating the experiences of families and service providers in the implementation of the NDIS in the State of Victoria between March and June 2019. Following Ethics approval by RMIT University in Melbourne, Victoria, a total of 14 organizations associated with ECI were approached to assist with recruitment. Of those, four ECI providers and one advocacy group agreed to distribute an invitational flyer to families through direct mail outs, newsletters, and online communication. Families were invited to contact the researchers directly if they were interested in sharing their NDIS experiences, either through an interview or participation in a focus group. At no point were participants' details revealed to service organizations. Despite the scheduled roll-out of the NDIS, it was difficult to estimate a participation rate from a total pool of potential participants at the time of study, as the number of families participating in, or about to transition into the scheme, was officially unknown. Eleven parents chose to participate in two focus groups, which were already existing parent support groups, whereas six parents participated in individual semistructured interviews. All participants completed an online demographic questionnaire.
The present study adopted a qualitative research design whereby participants' lived experiences of the NDIS and ECEI approach were explored through semistructured interviews and focus groups. Both strategies were used to allow for some flexibility, given families' limited time availability. Interviews and focus groups began with an overview of the study aim, followed by a broad open-ended question regarding participants' experiences (Kvale, 1996) with the implementation of the NDIS and ECEI approach. Follow-up questions were asked to identify parents' perspectives about the scheme (i.e., access, planning, goal setting, and intersection with mainstream setting) and to clarify participants' responses if necessary. For example, “How did you find the process of accessing the NDIS?,” “How did the planning go from your perspective?,” and “How do you go now about accessing services in the community?”
Data management and analysis
All the in-depth interviews were audiotaped and transcribed and cross-checked the written transcripts with the audiotapes for reliability purposes by an experienced doctoral student. Thematic analysis was used to systematically explore participants' views about their experiences with the implementation of the NDIS (Braun & Clarke, 2006). This process of locating common patterns within a data set (Gifford, 1998) commenced with an independent reading and coding by the author and an experienced doctoral student for all the participants' comments into tentative categories. The researchers then compared categories and engaged in discussion about the common experiences expressed by families. There was high overlap in individual interpretations and consensus was reached on all categories, resulting in a shared analytical framework being developed (Patton, 2015). The reliability of the findings was addressed by having independent judges read the interviews and the final themes. No changes to the themes were made.
Six main themes were identified reflecting parental perspectives about access, planning, and implementation, followed by views about choice and control, family and community life, and experiences of distress under the ECEI.
Accessing the NDIS and ECEI
Prior to accessing the NDIS system, participants understood the importance of provision of supports as early as possible from information gained from practitioners in the health and education services in the community. It must be noted that participants often referred to the NDIS, with a minimal mention of the ECEI approach when discussing services for their child with DD. At the point of access to the NDIS, either through the NDIA or local partners, communication difficulties were evident in many parental reports. Difficulties understanding the disability and administrative terminology used in written forms or through information available online were particularly noted, “... The wording. It's not people friendly, it too clinical...sometimes they throw words at you... it's just French to you ...” (P7). Parents highlighted confusion about the roles of different parts of the system, conducive to unnecessary delays in the initial exchange of information, “... and when I call every time I called the NDIA they will say oh hang on a second ... No, we cannot find you sorry, bye. Hang up the phone and then I call again and oh we cannot find your file. We don't know what where you are. Can you ring again? And they hung up the phone and then I have to ring again, oh let me buzz you through another manager and another manager ...” (P15). Few opportunities were available to have direct face-to-face interactions to gain information about accessing the ECEI and explain parental concerns. Four participants indicated that communication with the NDIA was at times unacceptable, “... I had to put in a complaint the way the NDIA were talking to me...yeah...the guy was really rude and he was just ... and I didn't know what to do. I ended up in tears on the phone” (P16). Despite these concerns, most parents interviewed expressed their satisfaction with the availability of funding and the hope that their children would access it and benefit in the future, especially when they reached school age. A minority of parents, those who enjoyed greater education and knowledge of the disability system, reported limited difficulty accessing the NDIS.
Plan development and implementation
Most study parents knew of or had directly experienced the previous Victorian ECI, highlighting, when compared to the ECEI, its informational and coordinated approach to planning. With the exception of one parent, participants reported long and confusing waiting times for ECEI planning, typically carried out by a “planner” allocated by the local partner organization designated by the NDIA, “... So we had to wait a year, when it was rolling out, we were last on the list, the ECIS kids. So even though he wasn't receiving any services there was a gap of almost a year and a half where he has had no therapies or services” (P14). One parent from a culturally and linguistically diverse (CALD) background faced particularly long delays, which led to the family's temporary departure from Australia, “... so I'm waiting for that message to approve. I keep calling them and they said ya ya you are in waiting list ... so I thought why don't you go to [country of origin] ... after long waiting time. After two years almost ... so nobody's came over and asked why is happening. Meanwhile there's nobody tell where to go ... we thought NDIS they will also support us” (P3). Most parents reported that a substantial amount of knowledge was required to “work the system” once they were deemed to be eligible to receive funding for services, “... It depends on how you word your application. It can be very difficult to explain to planners what you need ... You have to play the game, like you have to, like, gear it ... by their rules” (P12). Moreover, parents perceived that some planners did not have the necessary requirements to work in ECI, “It didn't strike us as a person who'd had a lot of experience with say ... early intervention and children of that age ... they may have or may not have, didn't, didn't convey that, and, you know, overworked and just needed to get through stuff” (P4). Some participants indicated frustration with the planning process itself, being brief and administrative like, preventing them from having a conversation that would enable them to convey their concerns about their child and themselves. Participants voiced their preoccupation about the task of securing providers to implement the services stipulated in their child's plan, “... Because in their planning meeting I sort of said I just don't even know how I'm going to find providers, plus I have a daughter as well and I didn't want to be dragging her to ...” (P17). When available, participants mainly chose allied health therapies on a private basis or those in ECI nongovernment organizations, as opposed to educational or key workers, who are a main contact for the family and a conduit to team-based services. Those who did choose key workers, however, felt conflicted when choosing them above others, as there was not enough funding to cover all services. “... I would say the key worker should be mandatory for everyone ... but not easy when I have to choose between that and therapy for my child ...” (P5). Participants who had experienced or knew of the previous ECI system expressed the need for a key worker-type practitioner to be able to access a diversity of ECEI supports, “If you get a transdisciplinary package, you have flexibility to spend it how you like on physio, OT or speech ... but you have to request the package, and parents might not be aware of that ... you need a key worker to come in and say that” (P9). Coordination across different aspects of the child's plan was reported to be often overlooked, particularly when it involved links between mainstream settings and NDIS-funded supports, “... I know the therapist goes to preschool, but just sees J.,” “... my child goes to the speech therapist outside the room ... I don't think she talks to the psychologist ... I don't really know what she does” (P2). Furthermore, of all study participants, only one had heard about inclusion support in kindergarten.
Choice and control
Parents conveyed limited choice and control throughout their interactions with the NDIS system. They often did not have enough information to make a choice, “... I can't choose if I don't know what's there or if there is nothing there to get” (P5). Participants who felt they had the necessary information to select supports for their child found that planners would not approve them, which required constant justification “... because of my child's sensory issues, he needs to have this type of [garment], but I could not use the funding for it according to the planner ... even if you have the reports, even if you have all of your therapists saying this child needs that ... you still have to fight tooth and nail to get it” (P14). Parents voiced their need for supports related to the broader needs of the family system; however, they were often not considered in planning, “... and they go, that's [swimming lessons] the parental responsibility ... but a lot of families can't access a shopping centre or can't access swimming lessons ...” (P16). Moreover, considering their limited resources (e.g., car, computer, and child care), participants from CALD, low socioeconomic backgrounds, and with children with more complex needs (e.g., challenging behavior) reported to be most disadvantaged when it came to exercise choice and control, given rise to perceived inequalities in service provision.
Family and community life
Participants agreed that the NDIS must cater for the individual needs of the child; however, they perceived that it was at the expense of the family system, “... because it's—okay, it's about—it's all about the child slash person with disability but the family is the one that is dealing with that ... and there's no support at all for the families ... all about the individual” (P8). Specifically, a lack of recognition of everyday aspects of family life when, “... you have $20,000 for therapy, but you don't have a car ... you can't get your child out of the car...your spouse just left you ... you can't get a job ... you can't get to the supermarket to get food ...” (P15). This participant further illustrated the point “... they try calling me during school holidays ... I couldn't answer ... because I can't answer the phone when I have my child because he's screaming. Anyway, they [NDIA] sent me a letter ... so we are going to call you with a stated time. So I set that morning free and they didn't call ...” Parents also explained how their child's ECEI placed less emphasis on participation in community activities; rather, one-to-one therapy either in the home or in the educational setting (early childhood or school-based) was given a priority. In the few instances when inclusion in school or community settings was part of the child's plan, additional barriers were experienced, as these settings reported to be overwhelmed by the demand of many other children. Further, participants with prior experience of state-funded ECI services indicated that these typically assisted in organizing community-based supports. However, since the rollout of the NDIS, these community supports had ceased, with no alternatives provided. P17 further reflected on this point, “... there's a really clear, like, differentiation now between NDIS programs and then mainstream programs... there's no crossover ... because the funding has been removed ...”
Participants characterized their participation in the ECEI as stressful, from the initial contact with the NDIA, before, during, and after the planning process through securing funding. Parents expressed worry and uncertainty about making the best decisions for their children, and that their limited knowledge could be a barrier to service provision especially in instances where they had just learned about their child's developmental delay, “... Because it's overwhelming, parents might not be as critical as they need to be with providers. You get a diagnosis, but you don't know what else is out there, what's available. Maybe there are other things you should be doing that you don't know about ...” (P14). The perceived inevitability of having few opportunities to plan for their child's program invoked parents' feelings of uneasiness and apprehension “... very nervous about the planning meeting ... you've got one shot ... you don't get another chance ... you've got to be on the ball ... you need to anticipate 12 months in the future” (P7). Several handovers along the way—that is from the NDIA, to local planner, and then to recruiting of several service providers—were experienced as overwhelming and exhausting, “... There is a lot of shopping around [for service providers] ... It's really stressful ... you don't have a life anymore” (P8). Securing NDIS funding first, and then retaining it, was often reported as a cause of distress with the need to be consistently monitoring and justifying their funding, “... but we had gone through all of that in our plan ... it actually says nappies ... I've got actually money for nappies ... why do I have to go and prove that I need nappies?...” (P16). Added worries were reported regarding the unpredictability of the funding at the planning approval stage, often depending on the local coordinator, the planner, or the wording in the plan. Participants consistently conveyed that engagement in advocacy efforts to obtain the best for their child had become a priority, “... the NDIS does not make things easier ... there's tremendous pressure ... you have to do all this advocacy” (P10). The sole focus on the child meant that participants' concerns about their well-being were frequently missed in planning for supports. Parents described these experiences in detail “... we put up a front, pretend we're okay ... but other kids in the family miss out ... very hard family life ...” (P10), “it's very stressful, you don't even imagine. Our mind had ... can't even think” (P3). As a result, families indicated they experienced fatigue, lack of concentration, and self-doubt, “... That wasn't right [an unpleasant phone call with the NDIA], but you sort of think if it's just me ... am I emotional ...? Am I too invested or whatever?” (P16). Also reported was administrators', planners', and service providers' limited understanding and appreciation of how these concerns affected families “... whoever make the rules ... if they were in our position, if they had a child with a disability, they might understand a grain of it ... how we struggle, how we access things ... the whole navigation system of having a child with a disability ...” (P15). Overwhelmingly, parents expressed the need to have access to some form of support for families in the form of counselling or parent support groups.
Highlighting important policy and practice considerations, the present study findings show that the promise and potential invoked by the NDIS legislation's core tenets are yet to be realized for children with DD aged birth to 6 years. Further, it demonstrates that problems identified in the NDIS trial phase and earlier studies about its roll-out persist (Howard et al., 2015; Purcal et al., 2018). Most participants reported serious difficulties, which undermined not only children's timely access to best ECI practices, but also parental ability to support their children. Participants experienced unique concerns based on their relatively new transactions with the disability system, and as such, feeling overwhelmed in dealing with uncertainty around unknown terminology, systems, settings, and funding. This, in turn, limited their opportunities to exercise choice and control at various critical points of the ECEI service path, often hindering their participation in mainstream, typical contexts.
Accessing, waiting, and planning
As with most families who are in the process of gaining information, becoming knowledgeable, adapting to their child's developmental delay or diagnosis, and connecting to a new service system, participants approached the task of accessing the NDIS with anticipation; all parents were aware of the critical importance of early intervention to address their children's developmental concerns in a timely manner. At this crucial access point, ECEI service responses were delayed, confusing, laden with administrative language, and ultimately lacking in sensitivity. Parents faced challenges related to delays in assessment, plan development and coordination of plan implementation (and therefore funding), as well as a plan emphasis on child individual goals, which were largely limited to therapeutic services. These experiences not only are inconsistent with the application of effective ECI practice (Early Childhood Intervention Australia, 2016; Guralnick, 2019; Vargas-Barón et al., 2019), but may also be an indication of more systemic and structural barriers. That is, links among mainstream health, education, and community-based systems supporting young children with DD, the ECEI, and the NDIS implementation more broadly were reported to be nonexistent or weak at best. Furthermore, parents' reported difficulties in navigating these systems may reflect how the absence of a dedicated support coordinator for all families, to guide them before and after entering the ECEI stream, can limit access to resources that would otherwise promote optimal child developmental outcomes. A multiplicity of factors may be contributing to these challenges, including the limited information along a restricted service path (Fordham, Gibson, & Bowes, 2012); limited workforce competencies (Gilson et al., 2018); supervision and training (Baines & Macdonald, 2019); dilemmas and tensions posed by an immature market-driven system (Malbon, Carey, & Dickinson, 2017); and poor systems' coordination with community-based supports (Howard et al., 2015). Although some changes have been introduced to address access and planning delays (NDIA, 2019) in particular, consideration must be given to the development of a national strategy for the implementation of ECEI under the NDIS (Joint Standing Committee on the National Disability Insurance Scheme, 2019) that not only addresses these concerns, but provides clear direction for policy and practice. This can be pursued on the basis of contemporary ECI models that address implementation as well as intervention strategies that maximize child and family benefits (Dunst & Espe-Sherwindt, 2017).
The challenges of choice and control
Although choice and control constitute one of the pillars of the NDIS legislation, study findings revealed that the implementation of the ECEI approach hampered parental choice. In asserting the types of supports they perceived a need for, participants experienced limited information and guidance, poor availability of services, or no approval for funding of needed supports. Parents' confidence, particularly parents who could not make informed choices given their limited resources, was further challenged, as they had to provide constant justification for funding, as well as having to advocate for their rights and needs. These findings are consistent with recent research demonstrating that personalization schemes, such as the NDIS, can entrench rather than level existing inequalities and prevent the application of good practice, given the implicit administrative burden and accountability issues (Malbon et al., 2017; Taylor, Pothier, Hill, Rosenberg, & Wright, 2019). The exercise of choice and control is also more complex for families of young children, as they weigh a number of parental, child, or program-related factors in deciding among the service options for their children (Hebert, 2014), all of which can be made more difficult by the limited capacity of the service system and the attributes of staff involved in it (Carlon, Carter, & Stephenson, 2013). It is then not surprising that parents' choice of services may have been skewed, often precluding the implementation of practices that are known to be effective (Moore et al., 2019). One case in point is the finding regarding parents' hesitancy to choose services associated with key worker support, which has among its many functions the establishment of links with mainstream services. It is possible that knowledge, understanding, and practices about the crucial role of the key worker and team-based approaches may have been missed in the implementation of the ECEI, thus limiting parental choice of, and access to valuable resources and supports. In addition, as parents selected therapy-based above any other services, it is also possible that their participation in mainstream supports and services may have been jeopardized. This finding is noteworthy given its inconsistency with policy recommendations regarding the need for the interface between the NDIS and mainstream supports in achieving participant outcomes (Productivity Commission, 2017) as well as the importance of best practices regarding young children's participation in everyday natural environments (Early Childhood Intervention Australia, 2016).
The impact on family well-being
This theme is one of the most significant findings generated in the present study, whereby parents overwhelmingly described the extent of the perceived effect of their ECEI experience on themselves and their families. Reportedly, parents felt undermined in their competencies, often doubting their knowledge and confidence to support their children. Heightened emotional responses consistent with mental health concerns (American Psychiatric Association, 2013) included stress and anxiety in accessing services, having to advocate for their needs, asserting their rights, and uncertainty in finding and funding service providers. These concerns went often unrecognized in their interactions with ECEI planners and more formally, in the planning and goal development phase. Although the task of identifying, and proactively dealing with the mental health concerns of families of children with DD, has been a challenge for the ECI workforce (Gilson et al., 2018), it is possible that the implementation of the ECEI approach, as it currently stands, has amplified the distress experienced by parents. It is pivotal that local planners and service providers understand the uniqueness of everyday family life as well as the adaptations (physical, emotional, and informational) they must make to accommodate their child's disability (McConnell & Savage, 2015). Central to this aim is the adoption of promotive and competency-enhancing strategies to empower families and strengthen family interactions as demonstrated in numerous research studies for the last four decades (Dunst, 2017; Guralnick, 2019). Policies and practices that focus on the whole family from the outset are therefore urgently needed to ultimately sustain family capacity and well-being under the ECEI.
Study findings may not be generalizable given the limited size and characteristics of the sample. It was not possible to recruit families from indigenous backgrounds and the number of participating CALD families was limited. Despite these limitations, and considering the magnitude of the NDIS reform, the present study underscores the importance of documenting the experiences of families of young children with DD to guide policy and service development.
Study findings reflect the complexity of implementing a scheme of the scale of the NDIS, indicating that for children aged birth to 6 years, its promise is yet to be fulfilled. Families experienced a challenging system that was decidedly designed for adults with a disability, and that lacked most of the distinctive qualities that make an effective and efficient ECI support system. A reduction of family choice is evident through the introduction of a therapy-based approach, which has not only replaced, but weakened the implementation of ECI best practices in Victoria. Less control over resources is evident, as families face unpredictability in NDIA service responses, support to identify and gain access to services, and fragmentation in service planning. Thus, parents experienced diminished capacity and increased mental health concerns, which are detrimental to their caregiving role. Overall, the chasm between NDIS policy and its implementation is of great concern, clearly highlighting the urgent need for the scheme to review and reconceptualize the current ECEI approach to ensure the potential of the NDIS is accomplished for young children with DD and their families.
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