Capacity Building goals in young people with cerebral palsy in Australia: Analysis of publicly available National Disability Insurance Scheme data

Capacity Building goals in young people with cerebral palsy in Australia: Analysis of publicly available National Disability Insurance Scheme data | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Capacity Building goals in young people with cerebral palsy in Australia: Analysis of publicly available National Disability Insurance Scheme data Jacqueline Y Ding, Stacey L Cleary, Prue E Morgan This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4727702/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background The Australian National Disability Insurance Scheme (NDIS) aims to provide person- centred care for individuals with disabilities, promoting independence and participation in society. Young adults with cerebral palsy (CP) benefit from Capacity Building supports, which are critical for developing skills necessary across the lifespan. Methods A retrospective cross-sectional analysis was conducted using publicly available NDIS Participant and Payment datasets from the June 2023 Quarter. Data were extracted for young adults with CP aged 15–34 years and characteristics and funding allocation for Capacity Building goals examined. Comparisons of Capacity Building characteristics were made between NDIS participants with CP and NDIS participants with Down syndrome and Spinal Cord Injury (SCI). Results Overall, 99.5% (n = 6,273) of NDIS participants aged 15–34 with CP identified at least one Capacity Building goal, totalling 110,234 goals. Average annual payments for Capacity Building supports for NDIS participants with CP increased with age, from $ 27,000 for 15-18-year-olds to $ 59,000 for 25-34-year-olds. The most frequent Capacity Building goals identified by young adults with CP were ‘Daily Living’, ‘Social and Community Participation’, and ‘Health and Wellbeing’. The analysis highlighted variations in the type and funding allocation of Capacity Building supports accessed by young adults with CP compared to their peers with Down syndrome and SCI. Conclusion This study emphasises variations in NDIS funding allocation for young adults with CP during the transition into adulthood; tailored funding strategies are required to meet the evolving needs of people aging with CP. Individualised goal setting and personalised supports align with international best practices for disability supports, fostering independence and enhancing quality of life. Further research is needed to explore the short and long-term outcomes of NDIS-funded supports, ensure equitable resource distribution, and advance global discussions on inclusive policies that enable full participation for people with disabilities. cerebral palsy disability supports National Disability Insurance Scheme young adults Figures Figure 1 Figure 2 Introduction There is growing international awareness of the need to provide more person-centred care for individuals with disabilities, as emphasised by United Nations directives. 1–3 Globally, there is a push towards policies and practices that prioritise individual needs, rights, and preferences of people with disabilities. 1,2 This growing emphasis is crucial for addressing the inequities in health and disability services and support experienced by individuals with disabilities, such as disparities in access to healthcare, 3 education, 4 employment opportunities, 5,6 and social inclusion. 7 In Australia, this shift is reflected in the National Disability Insurance Scheme (NDIS), which commenced in 2013 after an extended period of activism, driven by the need to address longstanding issues of inequity and inadequate support for individuals with disabilities. 8,9 This Australian Government taxation-funded initiative arose from advocacy of those with disability, their families, and healthcare providers, motivated by the desire to see individuals with disabilities accessing the support required to lead their best lives. 10 It represents a pivotal initiative in Australia's efforts to provide comprehensive and person-centred support to people with life-long disabilities, ensuring they have access to the services and resources they need to participate fully in society and achieve their goals. 8,9 Enacted by the National Disability Insurance Agency (NDIA), the philosophy underpinning the NDIS is one of 'choice and control', aiming to empower people with disabilities to make decisions about their own lives. 8,11,12 Individuals may be eligible for NDIS support if they have a permanent and significant disability that impacts their ability to participate fully in everyday activities. 9,11,13 Eligibility criteria focus on the requirement that the person is under the age of 65 years when first applying, that their disability is likely to be lifelong and require support from multiple service providers, 9,11,13 and that their disability significantly affects their functional capacity and requires ongoing support or assistance. 9,11,13 Within this Scheme, individuals with cerebral palsy (CP) constitute a cohort who may be eligible to access NDIS supports to enhance their independence, improve their quality of life, and facilitate their participation in key life situations. 14 CP is a child-onset neurological condition primarily affecting movement and posture, typically resulting from brain injury or abnormal development before, during, or shortly after birth. 15,16 It encompasses a spectrum of motor impairments and a range of associated difficulties in mobility, coordination, and communication. 17,18 Given its lifelong nature, individuals with CP may experience ongoing lifespan challenges, impacting their physical, cognitive, and psychosocial wellbeing. 17,18 It is estimated that there were approximately 37,000 people living with CP in Australia in 2024, 75% of those being adults. 19 Like their peers without disability, young people with CP have diverse participation wants and needs, shaped by their individual abilities and interests. These may include preference for participation in recreational activities, access to inclusive education and employment, accommodating health services, increased social connections, and greater autonomy in every day personal care and decision-making. 20–24 However, evidence suggests that individuals with CP may experience limited avenues for realising their aspirations, 25–27 due to a combination of personal, environmental, and societal factors, leading to substantial gaps in social and health risks and outcomes. 28 Understanding these systematic differences and the lived experiences of individuals with CP is essential for addressing equity in health and disability services. Outcomes from Australia’s 2023 Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability (Disability Royal Commission) highlight the importance of creating environments conducive to the wellbeing and self-actualisation of individuals with disabilities, and the detriment that occurs without them. 29 Recommendations from the Disability Royal Commission include the promotion of autonomy and community access for people with disability, along with the advancement of inclusive education, employment, appropriate health services access and housing opportunities. 29 Such policy recommendations align with the need for evidence-based decisions to promote equity in health and healthcare. To support the capacity building and participation goals young people with CP have, individualised intervention is required, as participation is heavily influenced by the specifics of an environment and context for an activity. Tailored NDIS support can facilitate engagement of young people with CP through capacity building in key areas of adult life, for example in gaining employment, growing social networks and developing skills for participation in the areas of life that are important to them. Once accepted as a participant in the NDIS, there is a process of planning that includes individual goal setting, developing a tailored support plan to meet the participant's specific needs, and allocation of funding. NDIS funds may be made available for supports and services considered by the NDIA to be ‘reasonable and necessary’ for goal achievement. 30 There are three types of ‘Support budgets’ funded in an individual’s NDIS plan: Core, Capital and Capacity Building Supports. 31 Core Supports assist individuals with everyday activities and disability-related needs, covering self-care assistance, social participation support (e.g., support worker) and transportation costs (e.g. taxis). 31 Capital Supports funding may be used for assistive technology and equipment, home or vehicle modifications, and other items that enable independence and help participants achieve their goals. Lastly, Capacity Building funding is designed for building or enhancing an individual's skills, independence, and community participation, and can include support for skill development, therapeutic services (e.g., occupational or speech therapy), or assistance accessing education or employment opportunities. 31 Individuals may nominate one or more Capacity Building goals within the nine Capacity Building support sub-categories (Table 1 ). 31 Table 1 NDIS Capacity Building support sub-categories and outcome domains Capacity Building support sub-category Outcome Domain 1 Description Support Coordination Choice and Control This is a fixed amount for a Support Coordinator to assist individuals to develop and use their NDIS plan. Home Living Home Support to help individuals find and maintain an appropriate place to live. Social and Community Participation Social and Community Participation Development and training to increase individuals’ skills to participate in community, social and recreational activities. Employment Work This includes employment-related support, training and assessments that help individuals find and keep a job, such as the school leaver employment supports. Relationships Relationships This support helps individuals develop positive behaviours and interact with others. Health and Wellbeing Health and Wellbeing Includes exercise or diet advice to manage the impact of individuals’ disability. The NDIS does not fund gym memberships. Lifelong Learning Lifelong Learning Examples include training, advice and help to move from school to further education, such as university or Technical and Further Education (TAFE). Choice and Control Choice and Control Plan management to help individuals manage their NDIS plan, funding and paying for services. Daily Activity Daily Living Assessment, training and/or therapy to help increase skills, independence, and community participation. These services can be delivered individually or in groups. 1 NDIS ‘Outcome Domain’ refers to a specific area or aspect of life deemed important to achieve positive outcomes for participants. These outcome domains help to guide the planning and delivery of supports and services under the NDIS. 31 INSERT Table 1 AROUND HERE For young adults with CP, Capacity Building interventions have the potential to play a crucial role in enhancing a person’s capabilities. Outcomes may include growing autonomy in activities of daily living and preparing for opportunities to engage in further education or employment, leisure activities, and community interactions. 32,33 The journey ‘to and through’ young adulthood represents a significant period of transition, with many opportunities for exploring preferences, activity competence, and growing autonomy. 24 Well-developed Capacity Building supports may include those that assist a young person with CP to learn the skills needed for participation in a specific life situation, adapting to new challenges, and achieving greater independence in young adulthood. 34,35 The NDIA releases quarterly reports on NDIS program performance, including service delivery and participant outcomes. 36 These data are publicly accessible, aim to provide a level of transparency and accountability of operations, and allow for public scrutiny. Quarterly data reports provide information on total NDIS participant enrolments, funding allocation, and plan utilisation. 37 Smaller ‘data dashboards’ provide de-identified, condition-specific data on participants’ plans and payments relative to age and location. 37 Analysing these datasets may improve understanding of the factors that influence the distribution of health and disability services for individuals with CP. Given the critical need for skills development and capacity building in young adulthood, 34,35 the primary aim of this study was to examine publicly available NDIS data, and establish the characteristics of, and funding allocation for, Capacity Building goals for young adults with CP. Secondary aims were to explore if Capacity Building goals varied in this cohort according to age, and in comparison to other selected diagnostic groups. Methods Design Retrospective cross-sectional analysis of publicly available NDIS Participant and Payment datasets (described in Table 2 below). Data sources Participant and Payment datasets (‘data dashboards’) from the June 2023 Quarter, were accessed via the NDIA website (January, 2024). 38 At time of access, data from the June 2023 Quarter were the most current data set. Data relating to relevant participant and payment reports (Table 2 ) were downloaded to Microsoft Excel and saved on a secure server for analysis. The “Filter” function in Excel was applied to locate the data of interest (Table 2 ; column 3), which included participant numbers, nominated goals, and payment allocation information. Relevant data for the young adult age groups (15-18-, 19-24- and 25–34-year-old) were extracted and saved to a new Excel spreadsheet for analysis. Data released by the NDIA were anonymised, and fund sizes (in Australian dollars) provided as averaged data only. 38 Dollar amounts were rounded to the nearest one thousand dollars. Raw counts of participant plans with Capacity Building goals and the total number of Capacity Building goals nominated were provided as whole numbers. If a category/age group had fewer than 11 participants, data were not reported by the NDIA to reduce the risk of re-identification. Table 2 Participant and Payment datasets retrieved for this study Dataset description 1 Data extracted Participant dataset name Participant by diagnosis data Participants enrolled, organised by identified primary diagnosis. Total number of active NDIS participants who have CP as their primary disability; for the three age groups 15–18, 19–24, and 25–34 years. Participant numbers and plan budget data Number of active participants and their average support budget by service district, 2 age group, disability, and support class. 1) Total number of active NDIS participants with CP across the three age groups of interest that have at least one Capacity Building goal. 2) The proportion of average annualised budget allocated for Capacity Building goals relative to their total budget plan for NDIS participants with CP, for the three age groups of interest. Participant goals data Participant goal sub-categories by age group and disability group. 1) The distribution and frequency of Capacity Building sub-category goals nominated by NDIS participants with CP, across the three age groups of interest. 2) Total number of goals included in all active plans across the three age groups of interest. Payment datasets Average payments data Average annualised total NDIS payments 3 . 1) Average annualised payment for ALL Capacity Building goals 4 for participants with CP, Down syndrome, and SCI, across the three age groups. 2) Average annualised payment for each of the three age groups of participants with CP, Down syndrome, and SCI, across the eight Capacity Building sub-categories. Average support category payments data Average annualised NDIS payments allocated to each of Core supports, Capacity building and Capital supports. Average annualised payment for NDIS participants with CP, for each of the 8 Capacity Building sub-categories. Average payment support line item 5 data Average payments made to participants by support line items in NDIS plans. Most frequent line items identified for NDIS participants with CP, across each Capacity Building sub-category and by the three age groups of interest. 1 Descriptions located and adapted from NDIS website; 2 The service district corresponds to the participant's residential area, where services are delivered. Multiple Australian Bureau of Statistics (ABS) classified Local Government Areas (LGAs) are grouped together to define one NDIA service district; 3 For these data, payments are made when participants access supports; 4 Total Capacity Building payment amount inclusive of Support Coordination $ (unable to separate out from raw data); 5 An NDIS Line item specifies which support category budget the service should be paid from. INSERT Table 2 AROUND HERE Extracted data of interest Data for Capacity Building goals nominated by participants with a primary diagnosis of CP, aged 15 to 34 years inclusive, were extracted. These data included the quantity and types (sub-categories) of Capacity Building goals, and funding allocation for Capacity Building goals, both overall and per line item. Notably, data pertaining to clinical characteristics of this cohort such as gross motor function level (GMFCS) 39 are not collected by the NDIA. Each support sub-category within the NDIS payment system includes multiple specific supports and services, known as ‘line items’ (see Fig. 1 ). 40 A comprehensive listing of support line items is available as a separate file titled ‘NDIS Price Guide’ on the NDIS website. 40 This file contains item descriptors designed to aid support providers in claiming payments through a "best-fit" approach, and to help NDIS participants engage and negotiate with service providers. INSERT FIGURE 1 AROUND HERE Analysis Descriptive analysis was employed to report the characteristics of the NDIS participants enrolled with CP as their primary diagnosis, the young adult age groups of interest, and average annualised payment amount for NDIS Capacity Building goals. Comparisons of Capacity Building characteristics were made between NDIS participants with CP and NDIS participants with Down syndrome and Spinal Cord Injury (SCI). NDIS participants with Down syndrome were selected as a comparative cohort to those with CP due to the similar lifelong nature of the condition. 41 Meanwhile, participants with SCI were selected to facilitate comparisons in goals and funding allocation between these two groups, each characterised by neurological impairments and varying degrees of functional capacity – one childhood-onset and the other acquired. Data were only available as average annualised payments amounts. The absence of individualised raw data meant that range and standard deviation were unable to be calculated or reported. Proportions of average annualised payment allocated to Capacity Building were calculated where relevant. Payment data for eight of the nine Capacity Building support sub-categories were analysed: Choice and Control, Daily Activity, Employment, Health and Wellbeing, Home Living, Lifelong Learning, Relationships, and Social and Community Participation. Analysis of the sub-category ‘Support Coordination’ was not included, as this sub-category does not focus on participant Capacity Building goals. Multiple goals can be allocated to a sub-category. The frequency count of line items (see Fig. 1 and Table 2 footnote for description) for the eight Capacity Building sub-categories were also extracted and examined, and the most frequent line items for each age group identified. Results As of 30th June 2023, there were a total of 17,680 active participants in the NDIS with a primary disability of CP, and of these, 6,302 were aged between 15 and 34-years (36%). The total average annualised NDIS budget for these age groups was $ 89,000 per annum (pa), $ 152,000pa and $ 190,000pa for 15–18, 19–24 and 25–34 age groups respectively. Quantity of Capacity Building goals At least one Capacity Building goal was identified by 99.5 per cent (n = 6,273) of 15–34-year-old NDIS participants with a primary diagnosis of CP (Table 3 ), totalling 110,234 Capacity Building goals. The proportion of the average annualised budget allocated for Capacity Building goals, relative to total NDIS budget plan for participants with CP remained similar for the age groups of interest: 30.3% for 15–18-year-olds, 33.6% for 19–24-year-olds, and 31.1% for 25–34-year-olds. These proportions were generally less than allocated for young adults with Down Syndrome, but more than allocated for young adults with SCI. Table 3 Active NDIS participants with primary diagnoses of cerebral palsy (CP), Down syndrome and SCI who have nominated at least one Capacity Building goal in their plan Primary diagnosis of NDIS participants Age group Cerebral Palsy Down syndrome Spinal Cord Injury Number of participants with CB goals Proportion of average annualised budget 1 Number of participants with CB goals Proportion of average annualised budget Number of participants with CB goals Proportion of average annualised budget 15–18 years 1684 30.3% 870 48.4% 65 22.2% 19–24 years 1970 33.6% 1318 57.3% 151 23.2% 25–34 years 2619 31.1% 2302 49.1% 520 20.5% Total (N=) 6273 - 4490 - 736 - 1 Proportion of average annualised budget allocated for Capacity Building (CB) goals, relative to total NDIS budget plan; NB: data inclusive of participants who identified a Support Coordination related goal. INSERT Table 3 AROUND HERE Characteristics of Capacity Building goals Figure 2 outlines the average annualised payment ( $ ) of all Capacity Building goals for NDIS participants with CP across the three age groups of interest. There appears to be an upward trend in average annualised payment for Capacity Building supports as NDIS participants with CP age, increasing from $ 27,000pa for 15–18-year-olds, to $ 59,000pa for 25–34-year-olds. Total Capacity Building plan size for NDIS participants with CP remained relatively similar to those of participants with Down syndrome across the three age groups (within +/-15% of that of participants with CP throughout). Compared to participants with SCI, payments to participants with CP were much higher for those in age groups 19 to 24 years (+ 43%) and 25 to 34 years (+ 44%). INSERT FIGURE 2 AROUND HERE Types of Capacity Building goals Each NDIS participant can nominate one or more goals aligned within specific Capacity Building support sub-categories. For NDIS participants with CP, across all three age groups of interest, ‘Daily Living’, 'Social and Community Participation' and ‘Health and Wellbeing’ were the most frequently identified sub-categories for Capacity Building goals (Table 4 ; bold text). For 15–18-year-olds with CP, fewest goals were identified in the Capacity Building sub-category of ‘Home Living' (12.0% of cohort), for 19–24-year-olds it was ‘Relationships’ (20.7%). For the 25–34-year-old age group, ‘Lifelong Learning’ (17.9%) was the least identified sub-category goal (Table 4 ). Table 4 The number of active plans nominated by NDIS participants with cerebral palsy (CP), in addition to the distribution and frequency of Capacity Building sub-category goals Capacity Building support sub-category Participants with active plans who have identified a Capacity Building goal, in proportion to total number of active plans for age group 15–18 years n (%) 19–24 years n (%) 25–34 years n (%) Daily Activity 1371 (85.9) 1648 (83.3) 2037 (79.4) Social and Community Participation 1177 (73.7) 1495 (75.6) 2010 (78.4) Health and Wellbeing 865 (54.2) 1131 (57.2) 1601 (62.4) Choice and Control 1 412 (25.8) 551 (27.9) 760 (29.6) Employment 364 (22.8) 831 (42.0) 1056 (41.2) Lifelong Learning 435 (27.3) 491 (24.8) 460 (17.9) Relationships 392 (24.6) 409 (20.7) 525 (20.5) Home Living 192 (12.0) 563 (28.5) 866 (33.8) 1 Raw data was available by each outcome domain, therefore the total number for Choice and Control reported is inclusive of Support Coordination related goals. INSERT Table 4 AROUND HERE The average annualised payments for NDIS participants with CP, Down syndrome, and SCI across the eight Capacity Building sub-categories, for each of the three age groups was tabulated (Table 5 ). This data has also been transposed graphically for ease of visualisation (see Additional files 1–3). Table 5 Average annualised payments for active NDIS participants with cerebral palsy (CP), Down syndrome, and Spinal Cord Injury (SCI) across the eight Capacity Building sub-categories, for each of the three age groups 15 to 18 years, 19 to 24 years, and 25 to 34 years. 15–18 years 19–24 years 25–34 years Primary Diagnosis CP Down syndrome SCI CP Down syndrome SCI CP Down syndrome SCI Average annualised payments ( $ AUD) for Capacity Building sub-categories Choice & Control 1000 1000 2000 1000 1000 1000 1000 1000 1000 Daily Activity 12000 9000 19000 11000 7000 11000 10000 6000 13000 Employment 16000 18000 22000 5000 6000 6000 1000 1000 0 Health & Wellbeing 1000 1000 3000 1000 1000 3000 1000 1000 2000 Home Living 0 0 0 0 0 0 0 0 0 Lifelong Learning 0 0 0 0 0 0 0 1000 0 Relationships 5000 6000 6000 7000 6000 6000 7000 7000 13000 Social and Community Participation 2000 3000 0 2000 2000 5000 1000 2000 1000 NB: Bold text denotes the top two highest funded Capacity Building sub-categories for NDIS participants with CP per age group. INSERT Table 5 AROUND HERE Of note, for NDIS participants with CP, Down syndrome, and SCI across all three age groups, no payments were reported for the Capacity Building sub-categories of ‘Home Living’ and ‘Lifelong Learning’ other than an average of $ 1,000pa allocated to ‘Lifelong Learning’ sub-category for participants with Down syndrome in the 25–34-years-old age group. Regarding NDIS participants with CP, those in the 15–18-years-old age group had the highest average annualised funding allocated per person to ‘Employment’ ( $ 16,000pa) and ‘Daily Activity’ goals ( $ 12,000pa). Whereas for those in the 19–24-years-old age group, the Capacity building sub-category ‘Daily Activity’ received the highest reported average annualised payments ( $ 11,000pa), followed by ‘Relationships’ ( $ 7,000pa). NDIS participants with CP in the 25–34-years-old age group had highest funding allocated to the 'Daily Activity' ( $ 10,000pa) and 'Relationships' ( $ 7,000pa) Capacity-Building sub-categories. Average annualised payments for NDIS participants in the 15 to 24 years age group with SCI were three times more ( $ 3000pa) for ‘Health and Wellbeing’ compared to NDIS participants with CP ( $ 1,000pa). The payment distribution for participants with CP in the 25 to 34 years age group was the same for those with Down syndrome across the sub-categories of ‘Choice & Control’, ‘Employment’, ‘Health & Wellbeing’ and ‘Relationships’. However average annualised payments for those with SCI in this age group were greater than for participants with CP for ‘Daily Activity’ (+ 30.0%), ‘Health and Wellbeing’ (+ 100.0%) and ‘Relationships’ (+ 85.7%). Funding allocated for Capacity Building goals (by most frequent line item) : Table 6 outlines the highest frequency Capacity Building line items for each of the eight Capacity Building Support sub-categories. The most frequently nominated line items for NDIS participants with CP were for the ‘Daily Activity’ goal. For those with CP, access to supports for Daily Activity goals increased proportionally with age (for example for occupational therapy, an increase of + 29% and + 96% per annum for 19–24-year-olds and 25–34-year-olds respectively is observed, compared to the 15–18-year-old age group). An increase can also be observed with ageing in the ‘Health and Wellbeing’, ‘Relationships’ and ‘Choice and Control’ sub-categories. Across the three age groups, few participants nominated goals associated with ‘Social and Community Participation’ and ‘Employment’ related supports in their NDIS plan; use of School Leaver Employment Supports was highest in the 19–24-year-old age group (n = 114). Few participants in any age group nominated line items against ‘Lifelong Learning’ and ‘Home Living’ goals. Table 6 The most frequent Capacity Building line items for Capacity Building Support sub-categories. Number of participants with CP with CB goals N = 1,684 N = 1,970 N = 2,619 Capacity Building Support sub-category Capacity Building sub-category line-item descriptions Number of participants nominating line items, n 15–18 years 19–24 years 25–34 years Home Living Assistance With Accommodation and Tenancy Obligations - < 11 - Social and Community Participation Skills Development and Training 21 33 29 Life Transition Planning Incl. Mentoring Peer-Support and Individual Skill Development 16 22 13 Employment School Leaver Employment Supports 22 114 < 11 Employment Support - 24 14 Relationships Specialist Behavioural Intervention Supports 90 156 257 Behaviour Management Plan incl included training in behaviour management strategies 75 132 230 Health and Wellbeing Consultation with dietician 34 65 101 Consultation with exercise physiologist regarding an exercise program 27 55 116 Lifelong Learning Transition Through School and To Further Education - < 11 - Choice and Control Plan Management – Financial Administration 858 1167 1737 Daily Activity 1 Assessment Recommendation Therapy and/or Training with: Physiotherapist 799 960 1293 Occupational therapist 702 906 1379 Speech Pathologist 422 480 655 Exercise Physiologist 293 282 446 Psychologist 191 202 286 Dietitian 116 150 265 Individual Skill Development and Training Including Public Transport Training 78 109 136 1 The Improved Daily Living Skills supports (Daily Activity) were extensive (39 individual line items); the 7 most frequently accessed supports are reported. INSERT Table 6 AROUND HERE Discussion This study used publicly available NDIS data to explore characteristics of, and funding allocation for, Capacity Building goals of young adults with a primary diagnosis of CP. Comparisons were made across the three young adult age groups, and with same-age NDIS participants with Down syndrome and SCI. Results demonstrate variations in the type and funding allocation of Capacity Building supports accessed by young adult NDIS participants with CP both with age, and compared to those with other life-long disabilities. These findings highlight the importance of developing and implementing targeted policies that allow for the access and distribution of health resources according to lifespan need within diagnostic populations. Increase in CB proportional support across lifespan, emphasis on ‘Daily Living’ goals Capacity Building supports are fundamental to the philosophy of the NDIS, aiming to enhance a person’s independence, and skills to achieve their participation goals. 42 Analysis of plan allocations shows an increasing investment in Capacity Building goals across each of the three age groups of interest. A significant portion of Capacity Building funding, ranging from 79.4–85.9%, was allocated to the ‘Daily Activity’ sub-category, enabling recipients to access therapies for improving daily living skills. This is particularly beneficial, considering the limited availability of subsidised therapy for adults with CP prior to the NDIS. 43 The introduction of NDIS funding marks a substantial improvement in availability and accessibility of support for skill development in adulthood. These investments are crucial for reducing inequities and ensuring that individuals with CP can achieve better health outcomes and improved quality of life. 44 ‘Employment’ CB goal Funding for the Capacity Building ‘Employment’ goal was highest, at $ 16,000 annually, for 19-24-year-old NDIS participants with CP, with minimal continued investment following. This data may suggest that many young adult NDIS participants with CP may not be accessing supports available for ongoing employment capacity building. Possible reasons could be: individuals may lack awareness of employment support options available; access to employment supports may be too complex or time-consuming; 23,44 available support may not meet specific employment needs or goals; 6 societal barriers such as workplace discrimination or lack of accessible job opportunities may make seeking employment undesirable or unachievable; 45 or limited follow up and support from NDIS support coordinators in ensuring employment goals are achieved. 46 Considering literature on school leavers with CP suggesting complexity of their transition into employment, it seems improbable that all employment goals have been achieved by mid-twenties. 47,48 Ongoing exploration and analysis of disability employment strategies are warranted. Understanding the barriers to employment for individuals with CP is essential for developing targeted interventions that can help bridge these gaps and promote equity in employment opportunities. 46 ‘Home Living’ and ‘Lifelong Learning’ CB goals Unexpectedly, for NDIS participants with CP aged 15 to 34 years, there were no payments for the Capacity Building sub-categories of ‘Home Living’ and ‘Lifelong Learning.’ Recent research highlights the expectations and desires young people with CP harbour to engage in diverse facets of adult life, including advancing education and achieving independent living. 23,24,26,48,49 Given the critical developmental stage, it was anticipated that there would be targeted funding to support these areas. Lack of emphasis on these sub-categories could be reflective of the ongoing support that families play in the lives of these young people with CP. Notably, 87.5% of an Australian cohort of adults with CP aged 18 to 25 years, reported living in their parental home, compared to 48.2% of their similarly aged peers. 48 This trend is also evident in other international studies. 33,47 The absence of documented funding in these sub-categories suggests a support gap which could impede the ability of these young adults to fully participate in society. Addressing these gaps is critical for promoting equity and ensuring that all individuals with CP can achieve their full potential. Global Challenges and Disparities in Disability Support: An Analysis of NDIS and International Practices The analysis of NDIS Capacity Building funding allocations across different age and diagnostic groups highlights issues of concern, that align with global trends in support for people with disability. From an international perspective, many high-income countries face similar challenges in supporting young adults with disabilities in their transition to employment and independent living. For instance, in the United States, the Individuals with Disabilities Education Act (IDEA) provides transition services but often falls short in employment outcomes, mirroring the gaps seen in NDIS support utilisation. 50 In Europe, despite initiatives such as the European Disability Strategy, young adults with disabilities still experience higher unemployment rates and barriers in accessing vocational training 51 and lifelong learning opportunities. 4 This global pattern highlights the need for more accessible support systems, greater awareness of the specific needs and rights of individuals with disabilities, and targeted, effective interventions to ensure that young adults with disabilities can achieve their full potential in employment and independent living. International collaboration and the sharing of best practices can help refine and enhance support mechanisms, creating a more inclusive and effective global framework for disability support. By learning from international experiences and implementing comprehensive policies, nations can better address the systemic challenges faced by young adults with disabilities, fostering environments where they can thrive and contribute meaningfully to society. Several limitations must be considered when interpreting these findings. Data used in this study were derived from publicly available quarterly NDIS dashboards, compiled by the NDIA. There may be inaccuracies in the descriptions of plan allocations or the processes of data collection, entry, and reporting. The extent and impact of these potential inaccuracies are unknown. NDIS data on participant function are crude (e.g., 48% of NDIS participants with CP purported to have a 'low' level of function), 14 making it difficult to interpret data against standardised functional classification systems used in populations with CP (e.g., GMFCS, 39 manual ability classification system and/or communication function classification system, 52 ) and hindering a nuanced analysis of how function might influence the type and extent of supports accessed. Using validated measures may enable meaningful evaluation of outcomes, and help align the NDIS with global standards, ensuring participants receive care that is both comprehensive and comparable to other international leading healthcare systems. A total of 17,680 active participants with CP as their primary diagnosis were enrolled in the NDIS scheme in the June 2023 quarter. Despite data for participants with CP identified as a secondary diagnosis being available, that data is not age-group specific, and was not able to be included. Additionally, it is acknowledged that the NDIS includes only approximately 48% of the estimated 37,000 individuals currently living with CP in Australia. 19 A recent publication by the authors describe that some young adults with CP with higher functional capacity are reluctant to apply for NDIS support, perceiving themselves to be 'not disabled enough,’ despite experiencing impairments that limit their function and participation in everyday life 23,53 Data from individuals who are not NDIS participants are not considered in this study, potentially skewing the findings and leading to an underestimation of support needs for young adults with CP. Aligning data collection and analysis methods with international standards may improve the comparability of findings and contribute to global efforts to address health inequities for people with disabilities. Proposed NDIS Legislative Changes Despite demonstrated need, current proposed legislative changes to the NDIS (NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024) may undermine gains by shifting focus from Capacity Building and participant goal-based funding to 'flexible budgets’. This could force participants to prioritise basic daily supports over skill-building, limiting their potential for active societal participation and departing from the original principles of the NDIS. Submissions from stakeholders across Australia have highlighted concerns that the Bill risks leading to unintended consequences on participant welfare and reduced access to supports. These potential changes may exacerbate existing inequities and undermine efforts to provide comprehensive, person-centred care. Ongoing advocacy from the Australian community will be critical to ensuring that people with disabilities continue to have access to supports needed to enable them to ‘live an ordinary life.’ Conclusion Funding for Capacity Building supports for NDIS participants with CP increased with age, identifying variations in the type and allocation of supports compared to peers with Down syndrome and SCI. These findings emphasise the necessity of tailored approaches to funding and supports for people with disability, where individual needs of participants are considered alongside lifespan stage and participation preferences. For policymakers and health practitioners, this study highlights the importance of developing and implementing practical measures to ensure equitable resource distribution to enhance the quality of life and participation of all individuals with disabilities. The insights from this research can inform the design and implementation of more effective disability support services, contributing to better outcomes for people with disabilities worldwide. Declarations Declaration of Interest The authors report there are no competing interests to declare. Informed consent Informed consent is not applicable. Ethical approval We declare that Human Ethics and Consent to Participate are not applicable for this study. Funding This research project received no external funding. Author Contribution Authors JD, SC and PM contributed to the study design. JD lead the original draft preparation, with PM and SC assisting with its refinement. All authors have reviewed and approved the final manuscript and agree to be accountable for all aspects of the work, ensuring its accuracy and integrity. Acknowledgement Authors Jacqueline Ding and Stacey Cleary are supported through the Centre of Research Excellence: CP-ACHIEVE by the NHMRC (Grant ID: APP1171758). We gratefully acknowledge the funding and research support from CP-ACHIEVE in undertaking this study. Data Availability The NDIS data presented in this study were obtained from the official NDIS website. Weblink details can be found in the reference list of the manuscript. References CRDP. Convention on the Rights of Persons with Disabilities (CRPD) | United Nations Enable [Internet]. 2022 [cited 2022 Mar 8]. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. Mannan H, MacLachlan M, McVeigh J. 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Interventions to improve physical function for children and young people with cerebral palsy: international clinical practice guideline. Dev Med Child Neurol. 2022 May;64(5):536–49. Jacobson DNO, Löwing K, Hjalmarsson E, Tedroff K. Exploring social participation in young adults with cerebral palsy. J Rehabil Med. 2019 Mar;51(3):167–74. Clark HB, Crosland KA. Social and life skills development: Preparing and facilitating youth for transition into young adults. In: Achieving permanence for older children and youth in foster care. Columbia University Press; 2009. p. 313–36. Pao M. Conceptualization of Success in Young Adulthood. Child Adolesc Psychiatr Clin N Am. 2017 Apr;26(2):191–8. Olney S, Dickinson H. Australia’s New National Disability Insurance Scheme: Implications for Policy and Practice. Policy Des Pract. 2019 Jul;2(3):275–90. Participant dashboards | NDIS [Internet]. [cited 2024 Feb 8]. Available from: https://data.ndis.gov.au/reports-and-analyses/participant-dashboards Datasets | NDIS [Internet]. [cited 2024 Feb 9]. Available from: https://data.ndis.gov.au/datasets Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997 Apr;39(4):214–23. NDIS. NDIS Price Guide [Internet]. 2018 [cited 2023 Mar 3]. Available from: https://www.ndis.gov.au/media/348/download?attachment Australian Institute of Health and Welfare. Spinal injuries in Australia 2020-21 [Internet]. Canberra: AIHW; 2024. Available from: https://www.aihw.gov.au/reports/injury/spinal-injuries-in-australia-2020-21 Smith L, Morello R, Bennett M, Scope BG. ‘Having a go’: exploring the use of supports to make individualised living a reality. National Disability Insurance Agency; 2023 Jul. Morgan P, Pogrebnoy D, McDonald R. Health service experiences to address mobility decline in ambulant adults ageing with cerebral palsy. J Intellect Dev Disabil. 2014 Jul;39(3):282–9. Malbon E, Carey G, Meltzer A. Personalisation schemes in social care: are they growing social and health inequalities? BMC Public Health. 2019 Jun;19(1):805. Lindsay S, McDougall C, Menna-Dack D, Sanford R, Adams T. An ecological approach to understanding barriers to employment for youth with disabilities compared to their typically developing peers: views of youth, employers, and job counselors. Disabil Rehabil. 2015 Apr;37(8):701–11. Dowse L, Wiese M, Dew A, Smith L, Collings S, Didi A. More, better, or different? NDIS workforce planning for people with intellectual disability and complex support needs. J Intellect Dev Disabil. 2016 Jan;41(1):81–4. Pettersson K, Rodby-Bousquet E. Living Conditions and Social Outcomes in Adults With Cerebral Palsy. Front Neurol. 2021 Oct;12. Imms C, Reddihough D, Shepherd DA, Kavanagh A. Social outcomes of school leavers with cerebral palsy living in Victoria. Front Neurol. 2021; 12:753921. Ding J, Cleary S, Morgan P. Health literacy in adolescents and young adults with cerebral palsy: A mixed methods systematic review. Disabil Rehabil. 2024 Feb;1–13. Etscheidt SL, Hernandez-Saca D, Kramarczuk Voulgarides C. Monitoring the Transition Requirements of the Individuals With Disabilities Education Act: A Critique and a Proposal to Expand the Performance Indicators. J Disabil Policy Stud. 2023 May;10442073231177407. Asuman D, Gerdtham UG, Alriksson-Schmidt AI, Rodby-Bousquet E, Andersen GL, Jarl J. Pain and labor outcomes: A longitudinal study of adults with cerebral palsy in Sweden. Disabil Health J. 2023 Jul;16(3):101479. Eliasson AC, Krumlinde-Sundholm L, Rösblad B, Beckung E, Arner M, Öhrvall AM, et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol. 2006/06/19 ed. 2006 Jul;48(7):549–54. Henry G, Webb A, Galea C, Pearce A, Balde I, Garrity F, et al. Out-of-pocket costs for families and people living with cerebral palsy in Australia. PLOS ONE. 2023 Jul;18(7):e0288865. Additional Declarations No competing interests reported. Supplementary Files AdditionalFile1.png Additional File 1. Average annualised payment ($) for active NDIS participants with cerebral palsy (CP), Down syndrome, and Spinal Cord Injury (SCI) across the eight Capacity Building sub-categories, for 15- to 18-year-old. AdditionalFile2.png Additional File 2. Average annualised payment ($) for active NDIS participants with cerebral palsy (CP), Down syndrome, and Spinal Cord Injury (SCI) across the eight Capacity Building sub-categories, for 19- to 24-year-old. AdditionalFile3.png Additional File 3.Average annualised payment ($) for active NDIS participants with cerebral palsy (CP), Down syndrome, and Spinal Cord Injury (SCI) across the eight Capacity Building sub-categories, for 25- to 34-year-old. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4727702","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":340380166,"identity":"017d0744-7bf4-4f74-a781-b51ff5a2b7c2","order_by":0,"name":"Jacqueline Y 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items\u003c/p\u003e","description":"","filename":"Figure1highres.png","url":"https://assets-eu.researchsquare.com/files/rs-4727702/v1/b034b855a166cc82dfdf7429.png"},{"id":63833727,"identity":"fabbb0fd-c6e8-4bd0-a461-e6ccb02a54ba","added_by":"auto","created_at":"2024-09-02 19:34:09","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":81760,"visible":true,"origin":"","legend":"\u003cp\u003eAverage annualised payment ($) of all Capacity Building goals for those with cerebral palsy (CP), Down syndrome, and Spinal Cord Injury (SCI) across the three age groups.\u003c/p\u003e","description":"","filename":"Figure2highres.png","url":"https://assets-eu.researchsquare.com/files/rs-4727702/v1/a1941aa4fb29133ed003ee1a.png"},{"id":67513696,"identity":"e91296de-3e11-4fea-8c4f-f371c8250c25","added_by":"auto","created_at":"2024-10-25 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18-year-old.\u003c/p\u003e","description":"","filename":"AdditionalFile1.png","url":"https://assets-eu.researchsquare.com/files/rs-4727702/v1/3e6041a6753a9af1852f511c.png"},{"id":63833891,"identity":"585237c9-2dc0-46d6-a407-3318341d881c","added_by":"auto","created_at":"2024-09-02 19:42:09","extension":"png","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":289550,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAdditional File 2.\u003c/strong\u003e Average annualised payment ($) for active NDIS participants with cerebral palsy (CP), Down syndrome, and Spinal Cord Injury (SCI) across the eight Capacity Building sub-categories, for 19- to 24-year-old.\u003c/p\u003e","description":"","filename":"AdditionalFile2.png","url":"https://assets-eu.researchsquare.com/files/rs-4727702/v1/3a17e20d8b2347c867890956.png"},{"id":63833890,"identity":"9b511ac9-c27e-4aba-990d-17e4bbb99efe","added_by":"auto","created_at":"2024-09-02 19:42:09","extension":"png","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":277614,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eAdditional File 3.\u003c/strong\u003eAverage annualised payment ($) for active NDIS participants with cerebral palsy (CP), Down syndrome, and Spinal Cord Injury (SCI) across the eight Capacity Building sub-categories, for 25- to 34-year-old.\u003c/p\u003e","description":"","filename":"AdditionalFile3.png","url":"https://assets-eu.researchsquare.com/files/rs-4727702/v1/d02127a8ed0cd17e10b0fdda.png"}],"financialInterests":"No competing interests reported.","formattedTitle":"Capacity Building goals in young people with cerebral palsy in Australia: Analysis of publicly available National Disability Insurance Scheme data","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThere is growing international awareness of the need to provide more person-centred care for individuals with disabilities, as emphasised by United Nations directives.\u003csup\u003e1\u0026ndash;3\u003c/sup\u003e Globally, there is a push towards policies and practices that prioritise individual needs, rights, and preferences of people with disabilities.\u003csup\u003e1,2\u003c/sup\u003e This growing emphasis is crucial for addressing the inequities in health and disability services and support experienced by individuals with disabilities, such as disparities in access to healthcare,\u003csup\u003e3\u003c/sup\u003e education,\u003csup\u003e4\u003c/sup\u003e employment opportunities,\u003csup\u003e5,6\u003c/sup\u003e and social inclusion.\u003csup\u003e7\u003c/sup\u003e In Australia, this shift is reflected in the National Disability Insurance Scheme (NDIS), which commenced in 2013 after an extended period of activism, driven by the need to address longstanding issues of inequity and inadequate support for individuals with disabilities.\u003csup\u003e8,9\u003c/sup\u003e This Australian Government taxation-funded initiative arose from advocacy of those with disability, their families, and healthcare providers, motivated by the desire to see individuals with disabilities accessing the support required to lead their best lives.\u003csup\u003e10\u003c/sup\u003e It represents a pivotal initiative in Australia's efforts to provide comprehensive and person-centred support to people with life-long disabilities, ensuring they have access to the services and resources they need to participate fully in society and achieve their goals.\u003csup\u003e8,9\u003c/sup\u003e Enacted by the National Disability Insurance Agency (NDIA), the philosophy underpinning the NDIS is one of 'choice and control', aiming to empower people with disabilities to make decisions about their own lives.\u003csup\u003e8,11,12\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eIndividuals may be eligible for NDIS support if they have a permanent and significant disability that impacts their ability to participate fully in everyday activities.\u003csup\u003e9,11,13\u003c/sup\u003e Eligibility criteria focus on the requirement that the person is under the age of 65 years when first applying, that their disability is likely to be lifelong and require support from multiple service providers,\u003csup\u003e9,11,13\u003c/sup\u003e and that their disability significantly affects their functional capacity and requires ongoing support or assistance.\u003csup\u003e9,11,13\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eWithin this Scheme, individuals with cerebral palsy (CP) constitute a cohort who may be eligible to access NDIS supports to enhance their independence, improve their quality of life, and facilitate their participation in key life situations.\u003csup\u003e14\u003c/sup\u003e CP is a child-onset neurological condition primarily affecting movement and posture, typically resulting from brain injury or abnormal development before, during, or shortly after birth.\u003csup\u003e15,16\u003c/sup\u003e It encompasses a spectrum of motor impairments and a range of associated difficulties in mobility, coordination, and communication.\u003csup\u003e17,18\u003c/sup\u003e Given its lifelong nature, individuals with CP may experience ongoing lifespan challenges, impacting their physical, cognitive, and psychosocial wellbeing.\u003csup\u003e17,18\u003c/sup\u003e It is estimated that there were approximately 37,000 people living with CP in Australia in 2024, 75% of those being adults.\u003csup\u003e19\u003c/sup\u003e\u003c/p\u003e \u003cp\u003e Like their peers without disability, young people with CP have diverse participation wants and needs, shaped by their individual abilities and interests. These may include preference for participation in recreational activities, access to inclusive education and employment, accommodating health services, increased social connections, and greater autonomy in every day personal care and decision-making.\u003csup\u003e20\u0026ndash;24\u003c/sup\u003e However, evidence suggests that individuals with CP may experience limited avenues for realising their aspirations,\u003csup\u003e25\u0026ndash;27\u003c/sup\u003e due to a combination of personal, environmental, and societal factors, leading to substantial gaps in social and health risks and outcomes.\u003csup\u003e28\u003c/sup\u003e Understanding these systematic differences and the lived experiences of individuals with CP is essential for addressing equity in health and disability services. Outcomes from Australia\u0026rsquo;s 2023 Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability (Disability Royal Commission) highlight the importance of creating environments conducive to the wellbeing and self-actualisation of individuals with disabilities, and the detriment that occurs without them.\u003csup\u003e29\u003c/sup\u003e Recommendations from the Disability Royal Commission include the promotion of autonomy and community access for people with disability, along with the advancement of inclusive education, employment, appropriate health services access and housing opportunities.\u003csup\u003e29\u003c/sup\u003e Such policy recommendations align with the need for evidence-based decisions to promote equity in health and healthcare. To support the capacity building and participation goals young people with CP have, individualised intervention is required, as participation is heavily influenced by the specifics of an environment and context for an activity. Tailored NDIS support can facilitate engagement of young people with CP through capacity building in key areas of adult life, for example in gaining employment, growing social networks and developing skills for participation in the areas of life that are important to them.\u003c/p\u003e \u003cp\u003eOnce accepted as a participant in the NDIS, there is a process of planning that includes individual goal setting, developing a tailored support plan to meet the participant's specific needs, and allocation of funding. NDIS funds may be made available for supports and services considered by the NDIA to be \u0026lsquo;reasonable and necessary\u0026rsquo; for goal achievement.\u003csup\u003e30\u003c/sup\u003e There are three types of \u0026lsquo;Support budgets\u0026rsquo; funded in an individual\u0026rsquo;s NDIS plan: Core, Capital and Capacity Building Supports.\u003csup\u003e31\u003c/sup\u003e Core Supports assist individuals with everyday activities and disability-related needs, covering self-care assistance, social participation support (e.g., support worker) and transportation costs (e.g. taxis).\u003csup\u003e31\u003c/sup\u003e Capital Supports funding may be used for assistive technology and equipment, home or vehicle modifications, and other items that enable independence and help participants achieve their goals. Lastly, Capacity Building funding is designed for building or enhancing an individual's skills, independence, and community participation, and can include support for skill development, therapeutic services (e.g., occupational or speech therapy), or assistance accessing education or employment opportunities.\u003csup\u003e31\u003c/sup\u003e Individuals may nominate one or more Capacity Building goals within the nine Capacity Building support sub-categories (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003csup\u003e31\u003c/sup\u003e\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eNDIS Capacity Building support sub-categories and outcome domains\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCapacity Building support sub-category\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOutcome Domain\u003csup\u003e1\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDescription\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSupport Coordination\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eChoice and Control\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThis is a fixed amount for a Support Coordinator to assist individuals to develop and use their NDIS plan.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHome Living\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHome\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSupport to help individuals find and maintain an appropriate place to live.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial and Community Participation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSocial and Community Participation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDevelopment and training to increase individuals\u0026rsquo; skills to participate in community, social and recreational activities.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmployment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWork\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThis includes employment-related support, training and assessments that help individuals find and keep a job, such as the school leaver employment supports.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRelationships\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRelationships\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eThis support helps individuals develop positive behaviours and interact with others.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth and Wellbeing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHealth and Wellbeing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIncludes exercise or diet advice to manage the impact of individuals\u0026rsquo; disability. The NDIS does not fund gym memberships.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLifelong Learning\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLifelong Learning\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eExamples include training, advice and help to move from school to further education, such as university or Technical and Further Education (TAFE).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChoice and Control\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eChoice and Control\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePlan management to help individuals manage their NDIS plan, funding and paying for services.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDaily Activity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDaily Living\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAssessment, training and/or therapy to help increase skills, independence, and community participation. These services can be delivered individually or in groups.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003e\u003csup\u003e1\u003c/sup\u003e NDIS \u0026lsquo;Outcome Domain\u0026rsquo; refers to a specific area or aspect of life deemed important to achieve positive outcomes for participants. These outcome domains help to guide the planning and delivery of supports and services under the NDIS.\u003csup\u003e31\u003c/sup\u003e\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e\n\u003ch3\u003eINSERT Table 1 AROUND HERE\u003c/h3\u003e\n\u003cp\u003eFor young adults with CP, Capacity Building interventions have the potential to play a crucial role in enhancing a person\u0026rsquo;s capabilities. Outcomes may include growing autonomy in activities of daily living and preparing for opportunities to engage in further education or employment, leisure activities, and community interactions.\u003csup\u003e32,33\u003c/sup\u003e The journey \u0026lsquo;to and through\u0026rsquo; young adulthood represents a significant period of transition, with many opportunities for exploring preferences, activity competence, and growing autonomy.\u003csup\u003e24\u003c/sup\u003e Well-developed Capacity Building supports may include those that assist a young person with CP to learn the skills needed for participation in a specific life situation, adapting to new challenges, and achieving greater independence in young adulthood.\u003csup\u003e34,35\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThe NDIA releases quarterly reports on NDIS program performance, including service delivery and participant outcomes.\u003csup\u003e36\u003c/sup\u003e These data are publicly accessible, aim to provide a level of transparency and accountability of operations, and allow for public scrutiny. Quarterly data reports provide information on total NDIS participant enrolments, funding allocation, and plan utilisation.\u003csup\u003e37\u003c/sup\u003e Smaller \u0026lsquo;data dashboards\u0026rsquo; provide de-identified, condition-specific data on participants\u0026rsquo; plans and payments relative to age and location.\u003csup\u003e37\u003c/sup\u003e Analysing these datasets may improve understanding of the factors that influence the distribution of health and disability services for individuals with CP.\u003c/p\u003e \u003cp\u003eGiven the critical need for skills development and capacity building in young adulthood,\u003csup\u003e34,35\u003c/sup\u003e the primary aim of this study was to examine publicly available NDIS data, and establish the characteristics of, and funding allocation for, Capacity Building goals for young adults with CP. Secondary aims were to explore if Capacity Building goals varied in this cohort according to age, and in comparison to other selected diagnostic groups.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eDesign\u003c/h2\u003e \u003cp\u003eRetrospective cross-sectional analysis of publicly available NDIS Participant and Payment datasets (described in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e below).\u003c/p\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData sources\u003c/h2\u003e \u003cp\u003eParticipant and Payment datasets (\u0026lsquo;data dashboards\u0026rsquo;) from the June 2023 Quarter, were accessed via the NDIA website (January, 2024).\u003csup\u003e38\u003c/sup\u003e At time of access, data from the June 2023 Quarter were the most current data set. Data relating to relevant participant and payment reports (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e) were downloaded to Microsoft Excel and saved on a secure server for analysis. The \u0026ldquo;Filter\u0026rdquo; function in Excel was applied to locate the data of interest (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e; column 3), which included participant numbers, nominated goals, and payment allocation information. Relevant data for the young adult age groups (15-18-, 19-24- and 25\u0026ndash;34-year-old) were extracted and saved to a new Excel spreadsheet for analysis.\u003c/p\u003e \u003cp\u003eData released by the NDIA were anonymised, and fund sizes (in Australian dollars) provided as averaged data only.\u003csup\u003e38\u003c/sup\u003e Dollar amounts were rounded to the nearest one thousand dollars. Raw counts of participant plans with Capacity Building goals and the total number of Capacity Building goals nominated were provided as whole numbers. If a category/age group had fewer than 11 participants, data were not reported by the NDIA to reduce the risk of re-identification.\u003c/p\u003e \u003c/div\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant and Payment datasets retrieved for this study\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDataset description\u003csup\u003e1\u003c/sup\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eData extracted\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eParticipant dataset name\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipant by diagnosis data\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eParticipants enrolled, organised by identified primary diagnosis.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTotal number of active NDIS participants who have CP as their primary disability; for the three age groups 15\u0026ndash;18, 19\u0026ndash;24, and 25\u0026ndash;34 years.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipant numbers and plan budget data\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNumber of active participants and their average support budget by service district,\u003csup\u003e2\u003c/sup\u003e age group, disability, and support class.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1) Total number of active NDIS participants with CP across the three age groups of interest that have at least one Capacity Building goal.\u003c/p\u003e \u003cp\u003e2) The proportion of average annualised budget allocated for Capacity Building goals relative to their total budget plan for NDIS participants with CP, for the three age groups of interest.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipant goals data\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eParticipant goal sub-categories by age group and disability group.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1) The distribution and frequency of Capacity Building sub-category goals nominated by NDIS participants with CP, across the three age groups of interest.\u003c/p\u003e \u003cp\u003e2) Total number of goals included in all active plans across the three age groups of interest.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePayment datasets\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAverage payments data\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAverage annualised total NDIS payments\u003csup\u003e3\u003c/sup\u003e.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1) Average annualised payment for ALL Capacity Building goals\u003csup\u003e4\u003c/sup\u003e for participants with CP, Down syndrome, and SCI, across the three age groups.\u003c/p\u003e \u003cp\u003e2) Average annualised payment for each of the three age groups of participants with CP, Down syndrome, and SCI, across the eight Capacity Building sub-categories.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAverage support category payments data\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAverage annualised NDIS payments allocated to each of Core supports, Capacity building and Capital supports.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAverage annualised payment for NDIS participants with CP, for each of the 8 Capacity Building sub-categories.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAverage payment support line item\u003csup\u003e5\u003c/sup\u003e data\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAverage payments made to participants by support line items in NDIS plans.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMost frequent line items identified for NDIS participants with CP, across each Capacity Building sub-category and by the three age groups of interest.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003e\u003csup\u003e1\u003c/sup\u003e Descriptions located and adapted from NDIS website; \u003csup\u003e2\u003c/sup\u003e The service district corresponds to the participant's residential area, where services are delivered. Multiple Australian Bureau of Statistics (ABS) classified Local Government Areas (LGAs) are grouped together to define one NDIA service district; \u003csup\u003e3\u003c/sup\u003e For these data, payments are made when participants access supports; \u003csup\u003e4\u003c/sup\u003e Total Capacity Building payment amount inclusive of Support Coordination $ (unable to separate out from raw data); \u003csup\u003e5\u003c/sup\u003eAn NDIS Line item specifies which support category budget the service should be paid from.\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eINSERT Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e AROUND HERE\u003c/h2\u003e \u003cdiv id=\"Sec7\" class=\"Section3\"\u003e \u003ch2\u003eExtracted data of interest\u003c/h2\u003e \u003cp\u003eData for Capacity Building goals nominated by participants with a primary diagnosis of CP, aged 15 to 34 years inclusive, were extracted. These data included the quantity and types (sub-categories) of Capacity Building goals, and funding allocation for Capacity Building goals, both overall and per line item. Notably, data pertaining to clinical characteristics of this cohort such as gross motor function level (GMFCS)\u003csup\u003e39\u003c/sup\u003e are not collected by the NDIA.\u003c/p\u003e \u003cp\u003eEach support sub-category within the NDIS payment system includes multiple specific supports and services, known as \u0026lsquo;line items\u0026rsquo; (see Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003csup\u003e40\u003c/sup\u003e A comprehensive listing of support line items is available as a separate file titled \u0026lsquo;NDIS Price Guide\u0026rsquo; on the NDIS website.\u003csup\u003e40\u003c/sup\u003e This file contains item descriptors designed to aid support providers in claiming payments through a \"best-fit\" approach, and to help NDIS participants engage and negotiate with service providers.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eINSERT FIGURE \u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e AROUND HERE\u003c/h2\u003e \u003cdiv id=\"Sec9\" class=\"Section3\"\u003e \u003ch2\u003eAnalysis\u003c/h2\u003e \u003cp\u003eDescriptive analysis was employed to report the characteristics of the NDIS participants enrolled with CP as their primary diagnosis, the young adult age groups of interest, and average annualised payment amount for NDIS Capacity Building goals.\u003c/p\u003e \u003cp\u003eComparisons of Capacity Building characteristics were made between NDIS participants with CP and NDIS participants with Down syndrome and Spinal Cord Injury (SCI). NDIS participants with Down syndrome were selected as a comparative cohort to those with CP due to the similar lifelong nature of the condition.\u003csup\u003e41\u003c/sup\u003e Meanwhile, participants with SCI were selected to facilitate comparisons in goals and funding allocation between these two groups, each characterised by neurological impairments and varying degrees of functional capacity \u0026ndash; one childhood-onset and the other acquired.\u003c/p\u003e \u003cp\u003eData were only available as average annualised payments amounts. The absence of individualised raw data meant that range and standard deviation were unable to be calculated or reported. Proportions of average annualised payment allocated to Capacity Building were calculated where relevant.\u003c/p\u003e \u003cp\u003ePayment data for eight of the nine Capacity Building support sub-categories were analysed: Choice and Control, Daily Activity, Employment, Health and Wellbeing, Home Living, Lifelong Learning, Relationships, and Social and Community Participation. Analysis of the sub-category \u0026lsquo;Support Coordination\u0026rsquo; was not included, as this sub-category does not focus on participant Capacity Building goals.\u003c/p\u003e \u003cp\u003eMultiple goals can be allocated to a sub-category. The frequency count of line items (see Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e and Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e footnote for description) for the eight Capacity Building sub-categories were also extracted and examined, and the most frequent line items for each age group identified.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eAs of 30th June 2023, there were a total of 17,680 active participants in the NDIS with a primary disability of CP, and of these, 6,302 were aged between 15 and 34-years (36%). The total average annualised NDIS budget for these age groups was \u003cspan\u003e$\u003c/span\u003e89,000 per annum (pa), \u003cspan\u003e$\u003c/span\u003e152,000pa and \u003cspan\u003e$\u003c/span\u003e190,000pa for 15\u0026ndash;18, 19\u0026ndash;24 and 25\u0026ndash;34 age groups respectively.\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eQuantity of Capacity Building goals\u003c/h2\u003e \u003cp\u003eAt least one Capacity Building goal was identified by 99.5 per cent (n\u0026thinsp;=\u0026thinsp;6,273) of 15\u0026ndash;34-year-old NDIS participants with a primary diagnosis of CP (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e), totalling 110,234 Capacity Building goals. The proportion of the average annualised budget allocated for Capacity Building goals, relative to total NDIS budget plan for participants with CP remained similar for the age groups of interest: 30.3% for 15\u0026ndash;18-year-olds, 33.6% for 19\u0026ndash;24-year-olds, and 31.1% for 25\u0026ndash;34-year-olds. These proportions were generally less than allocated for young adults with Down Syndrome, but more than allocated for young adults with SCI.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eActive NDIS participants with primary diagnoses of cerebral palsy (CP), Down syndrome and SCI who have nominated at least one Capacity Building goal in their plan\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"7\" nameend=\"c7\" namest=\"c1\"\u003e \u003cp\u003ePrimary diagnosis of NDIS participants\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge group\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eCerebral Palsy\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c5\" namest=\"c4\"\u003e \u003cp\u003eDown syndrome\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c7\" namest=\"c6\"\u003e \u003cp\u003eSpinal Cord Injury\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNumber of participants with CB goals\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eProportion of average annualised budget\u003csup\u003e1\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNumber of participants with CB goals\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eProportion of average annualised budget\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eNumber of participants with CB goals\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eProportion of average annualised budget\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e15\u0026ndash;18 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1684\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e30.3%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e870\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e48.4%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e65\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e22.2%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e19\u0026ndash;24 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1970\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e33.6%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1318\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e57.3%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e151\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e23.2%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e25\u0026ndash;34 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2619\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e31.1%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2302\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e49.1%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e520\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e20.5%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eTotal (N=)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e6273\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003e-\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003e4490\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u003cb\u003e-\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e\u003cb\u003e736\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e\u003cb\u003e-\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"7\"\u003e\u003csup\u003e1\u003c/sup\u003e Proportion of average annualised budget allocated for Capacity Building (CB) goals, relative to total NDIS budget plan; NB: data inclusive of participants who identified a Support Coordination related goal.\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eINSERT Table \u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e AROUND HERE\u003c/h2\u003e \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e \u003ch2\u003eCharacteristics of Capacity Building goals\u003c/h2\u003e \u003cp\u003eFigure \u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e outlines the average annualised payment (\u003cspan\u003e$\u003c/span\u003e) of all Capacity Building goals for NDIS participants with CP across the three age groups of interest. There appears to be an upward trend in average annualised payment for Capacity Building supports as NDIS participants with CP age, increasing from \u003cspan\u003e$\u003c/span\u003e27,000pa for 15\u0026ndash;18-year-olds, to \u003cspan\u003e$\u003c/span\u003e59,000pa for 25\u0026ndash;34-year-olds.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eTotal Capacity Building plan size for NDIS participants with CP remained relatively similar to those of participants with Down syndrome across the three age groups (within +/-15% of that of participants with CP throughout). Compared to participants with SCI, payments to participants with CP were much higher for those in age groups 19 to 24 years (+\u0026thinsp;43%) and 25 to 34 years (+\u0026thinsp;44%).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eINSERT FIGURE \u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e AROUND HERE\u003c/h2\u003e \u003cdiv id=\"Sec15\" class=\"Section3\"\u003e \u003ch2\u003eTypes of Capacity Building goals\u003c/h2\u003e \u003cp\u003eEach NDIS participant can nominate one or more goals aligned within specific Capacity Building support sub-categories. For NDIS participants with CP, across all three age groups of interest, \u0026lsquo;Daily Living\u0026rsquo;, 'Social and Community Participation' and \u0026lsquo;Health and Wellbeing\u0026rsquo; were the most frequently identified sub-categories for Capacity Building goals (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e; bold text). For 15\u0026ndash;18-year-olds with CP, fewest goals were identified in the Capacity Building sub-category of \u0026lsquo;Home Living' (12.0% of cohort), for 19\u0026ndash;24-year-olds it was \u0026lsquo;Relationships\u0026rsquo; (20.7%). For the 25\u0026ndash;34-year-old age group, \u0026lsquo;Lifelong Learning\u0026rsquo; (17.9%) was the least identified sub-category goal (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThe number of active plans nominated by NDIS participants with cerebral palsy (CP), in addition to the distribution and frequency of Capacity Building sub-category goals\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCapacity Building support sub-category\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003eParticipants with active plans who have identified a Capacity Building goal, in proportion to total number of active plans for age group\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15\u0026ndash;18 years\u003c/p\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e19\u0026ndash;24 years\u003c/p\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e25\u0026ndash;34 years\u003c/p\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDaily Activity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e1371 (85.9)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003e1648 (83.3)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003e2037 (79.4)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial and Community Participation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e1177 (73.7)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003e1495 (75.6)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003e2010 (78.4)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth and Wellbeing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e865 (54.2)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003e1131 (57.2)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003e1601 (62.4)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChoice and Control\u003csup\u003e1\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e412 (25.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e551 (27.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e760 (29.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmployment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e364 (22.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e831 (42.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1056 (41.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLifelong Learning\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e435 (27.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e491 (24.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e460 (17.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRelationships\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e392 (24.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e409 (20.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e525 (20.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHome Living\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e192 (12.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e563 (28.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e866 (33.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"4\"\u003e\u003csup\u003e1\u003c/sup\u003e Raw data was available by each outcome domain, therefore the total number for Choice and Control reported is inclusive of Support Coordination related goals.\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eINSERT Table \u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e AROUND HERE\u003c/h2\u003e \u003cp\u003eThe average annualised payments for NDIS participants with CP, Down syndrome, and SCI across the eight Capacity Building sub-categories, for each of the three age groups was tabulated (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e). This data has also been transposed graphically for ease of visualisation (see Additional files 1\u0026ndash;3).\u003c/p\u003e \u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eAverage annualised payments for active NDIS participants with cerebral palsy (CP), Down syndrome, and Spinal Cord Injury (SCI) across the eight Capacity Building sub-categories, for each of the three age groups 15 to 18 years, 19 to 24 years, and 25 to 34 years.\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"10\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c10\" colnum=\"10\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e\u003cp\u003e15\u0026ndash;18 years\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c7\" namest=\"c5\"\u003e\u003cp\u003e19\u0026ndash;24 years\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c10\" namest=\"c8\"\u003e\u003cp\u003e25\u0026ndash;34 years\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePrimary Diagnosis\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eCP\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eDown syndrome\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eSCI\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eCP\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eDown syndrome\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eSCI\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003eCP\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003eDown syndrome\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003eSCI\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"10\" nameend=\"c10\" namest=\"c1\"\u003e\u003cp\u003eAverage annualised payments (\u003cspan\u003e$\u003c/span\u003eAUD) for Capacity Building sub-categories\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChoice \u0026amp; Control\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e2000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eDaily Activity\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003e12000\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e9000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e19000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e\u003cb\u003e11000\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e7000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e11000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e\u003cb\u003e10000\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e6000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003e13000\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEmployment\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003e16000\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e18000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e22000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e5000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e6000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e6000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHealth \u0026amp; Wellbeing\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e3000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e3000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003e2000\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHome Living\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eLifelong Learning\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRelationships\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e6000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e6000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e\u003cb\u003e7000\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e6000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e6000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e\u003cb\u003e7000\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e7000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003e13000\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSocial and Community Participation\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e2000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e2000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003e5000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c8\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c9\"\u003e\u003cp\u003e2000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c10\"\u003e\u003cp\u003e1000\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003ctfoot\u003e\u003ctr\u003e\u003ctd colspan=\"10\"\u003e NB: Bold text denotes the top two highest funded Capacity Building sub-categories for NDIS participants with CP per age group.\u003c/td\u003e\u003c/tr\u003e\u003c/tfoot\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eINSERT Table \u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e AROUND HERE\u003c/h2\u003e \u003cp\u003e Of note, for NDIS participants with CP, Down syndrome, and SCI across all three age groups, no payments were reported for the Capacity Building sub-categories of \u0026lsquo;Home Living\u0026rsquo; and \u0026lsquo;Lifelong Learning\u0026rsquo; other than an average of \u003cspan\u003e$\u003c/span\u003e1,000pa allocated to \u0026lsquo;Lifelong Learning\u0026rsquo; sub-category for participants with Down syndrome in the 25\u0026ndash;34-years-old age group.\u003c/p\u003e \u003cp\u003eRegarding NDIS participants with CP, those in the 15\u0026ndash;18-years-old age group had the highest average annualised funding allocated per person to \u0026lsquo;Employment\u0026rsquo; (\u003cspan\u003e$\u003c/span\u003e16,000pa) and \u0026lsquo;Daily Activity\u0026rsquo; goals (\u003cspan\u003e$\u003c/span\u003e12,000pa). Whereas for those in the 19\u0026ndash;24-years-old age group, the Capacity building sub-category \u0026lsquo;Daily Activity\u0026rsquo; received the highest reported average annualised payments (\u003cspan\u003e$\u003c/span\u003e11,000pa), followed by \u0026lsquo;Relationships\u0026rsquo; (\u003cspan\u003e$\u003c/span\u003e7,000pa). NDIS participants with CP in the 25\u0026ndash;34-years-old age group had highest funding allocated to the 'Daily Activity' (\u003cspan\u003e$\u003c/span\u003e10,000pa) and 'Relationships' (\u003cspan\u003e$\u003c/span\u003e7,000pa) Capacity-Building sub-categories.\u003c/p\u003e \u003cp\u003eAverage annualised payments for NDIS participants in the 15 to 24 years age group with SCI were three times more (\u003cspan\u003e$\u003c/span\u003e3000pa) for \u0026lsquo;Health and Wellbeing\u0026rsquo; compared to NDIS participants with CP (\u003cspan\u003e$\u003c/span\u003e1,000pa). The payment distribution for participants with CP in the 25 to 34 years age group was the same for those with Down syndrome across the sub-categories of \u0026lsquo;Choice \u0026amp; Control\u0026rsquo;, \u0026lsquo;Employment\u0026rsquo;, \u0026lsquo;Health \u0026amp; Wellbeing\u0026rsquo; and \u0026lsquo;Relationships\u0026rsquo;. However average annualised payments for those with SCI in this age group were greater than for participants with CP for \u0026lsquo;Daily Activity\u0026rsquo; (+\u0026thinsp;30.0%), \u0026lsquo;Health and Wellbeing\u0026rsquo; (+\u0026thinsp;100.0%) and \u0026lsquo;Relationships\u0026rsquo; (+\u0026thinsp;85.7%).\u003c/p\u003e \u003cp\u003e \u003cb\u003eFunding allocated for Capacity Building goals (by most frequent line item)\u003c/b\u003e:\u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e outlines the highest frequency Capacity Building line items for each of the eight Capacity Building Support sub-categories. The most frequently nominated line items for NDIS participants with CP were for the \u0026lsquo;Daily Activity\u0026rsquo; goal. For those with CP, access to supports for Daily Activity goals increased proportionally with age (for example for occupational therapy, an increase of +\u0026thinsp;29% and +\u0026thinsp;96% per annum for 19\u0026ndash;24-year-olds and 25\u0026ndash;34-year-olds respectively is observed, compared to the 15\u0026ndash;18-year-old age group). An increase can also be observed with ageing in the \u0026lsquo;Health and Wellbeing\u0026rsquo;, \u0026lsquo;Relationships\u0026rsquo; and \u0026lsquo;Choice and Control\u0026rsquo; sub-categories.\u003c/p\u003e\u003cp\u003eAcross the three age groups, few participants nominated goals associated with \u0026lsquo;Social and Community Participation\u0026rsquo; and \u0026lsquo;Employment\u0026rsquo; related supports in their NDIS plan; use of School Leaver Employment Supports was highest in the 19\u0026ndash;24-year-old age group (n\u0026thinsp;=\u0026thinsp;114). Few participants in any age group nominated line items against \u0026lsquo;Lifelong Learning\u0026rsquo; and \u0026lsquo;Home Living\u0026rsquo; goals.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab6\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 6\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThe most frequent Capacity Building line items for Capacity Building Support sub-categories.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eNumber of participants with CP with CB goals\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;1,684\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;1,970\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;2,619\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCapacity Building Support sub-category\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCapacity Building sub-category line-item descriptions\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c5\" namest=\"c3\"\u003e \u003cp\u003eNumber of participants nominating line items, n\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u0026ndash;18 years\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e19\u0026ndash;24 years\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003e25\u0026ndash;34 years\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHome Living\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAssistance With Accommodation and Tenancy Obligations\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eSocial and Community Participation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSkills Development and Training\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e33\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e29\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLife Transition Planning Incl. Mentoring Peer-Support and Individual Skill Development\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eEmployment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSchool Leaver Employment Supports\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e114\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEmployment Support\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eRelationships\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSpecialist Behavioural Intervention Supports\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e90\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e156\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e257\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBehaviour Management Plan incl included training in behaviour management strategies\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e75\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e132\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e230\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eHealth and Wellbeing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eConsultation with dietician\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e65\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e101\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eConsultation with exercise physiologist regarding an exercise program\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e55\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e116\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLifelong Learning\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTransition Through School and To Further Education\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChoice and Control\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePlan Management \u0026ndash; Financial Administration\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e858\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1167\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1737\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDaily Activity\u003csup\u003e1\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c5\" namest=\"c2\"\u003e \u003cp\u003eAssessment Recommendation Therapy and/or Training with:\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePhysiotherapist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e799\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e960\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1293\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOccupational therapist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e702\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e906\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1379\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSpeech Pathologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e422\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e480\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e655\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExercise Physiologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e293\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e282\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e446\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePsychologist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e191\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e202\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e286\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDietitian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e116\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e150\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e265\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIndividual Skill Development and Training Including Public Transport Training\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e78\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e109\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e136\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"5\"\u003e\u003csup\u003e1\u003c/sup\u003e The Improved Daily Living Skills supports (Daily Activity) were extensive (39 individual line items); the 7 most frequently accessed supports are reported.\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eINSERT Table \u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e AROUND HERE\u003c/h2\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study used publicly available NDIS data to explore characteristics of, and funding allocation for, Capacity Building goals of young adults with a primary diagnosis of CP. Comparisons were made across the three young adult age groups, and with same-age NDIS participants with Down syndrome and SCI. Results demonstrate variations in the type and funding allocation of Capacity Building supports accessed by young adult NDIS participants with CP both with age, and compared to those with other life-long disabilities. These findings highlight the importance of developing and implementing targeted policies that allow for the access and distribution of health resources according to lifespan need within diagnostic populations.\u003c/p\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eIncrease in CB proportional support across lifespan, emphasis on \u0026lsquo;Daily Living\u0026rsquo; goals\u003c/h2\u003e \u003cp\u003eCapacity Building supports are fundamental to the philosophy of the NDIS, aiming to enhance a person\u0026rsquo;s independence, and skills to achieve their participation goals.\u003csup\u003e42\u003c/sup\u003e Analysis of plan allocations shows an increasing investment in Capacity Building goals across each of the three age groups of interest. A significant portion of Capacity Building funding, ranging from 79.4\u0026ndash;85.9%, was allocated to the \u0026lsquo;Daily Activity\u0026rsquo; sub-category, enabling recipients to access therapies for improving daily living skills. This is particularly beneficial, considering the limited availability of subsidised therapy for adults with CP prior to the NDIS.\u003csup\u003e43\u003c/sup\u003e The introduction of NDIS funding marks a substantial improvement in availability and accessibility of support for skill development in adulthood. These investments are crucial for reducing inequities and ensuring that individuals with CP can achieve better health outcomes and improved quality of life.\u003csup\u003e44\u003c/sup\u003e\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026lsquo;Employment\u0026rsquo; CB goal\u003c/em\u003e \u003c/p\u003e \u003cp\u003e Funding for the Capacity Building \u0026lsquo;Employment\u0026rsquo; goal was highest, at \u003cspan\u003e$\u003c/span\u003e16,000 annually, for 19-24-year-old NDIS participants with CP, with minimal continued investment following. This data may suggest that many young adult NDIS participants with CP may not be accessing supports available for ongoing employment capacity building. Possible reasons could be: individuals may lack awareness of employment support options available; access to employment supports may be too complex or time-consuming;\u003csup\u003e23,44\u003c/sup\u003e available support may not meet specific employment needs or goals;\u003csup\u003e6\u003c/sup\u003e societal barriers such as workplace discrimination or lack of accessible job opportunities may make seeking employment undesirable or unachievable;\u003csup\u003e45\u003c/sup\u003e or limited follow up and support from NDIS support coordinators in ensuring employment goals are achieved.\u003csup\u003e46\u003c/sup\u003e Considering literature on school leavers with CP suggesting complexity of their transition into employment, it seems improbable that all employment goals have been achieved by mid-twenties.\u003csup\u003e47,48\u003c/sup\u003e Ongoing exploration and analysis of disability employment strategies are warranted. Understanding the barriers to employment for individuals with CP is essential for developing targeted interventions that can help bridge these gaps and promote equity in employment opportunities.\u003csup\u003e46\u003c/sup\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026lsquo;Home Living\u0026rsquo; and \u0026lsquo;Lifelong Learning\u0026rsquo; CB goals\u003c/em\u003e \u003c/p\u003e \u003cp\u003eUnexpectedly, for NDIS participants with CP aged 15 to 34 years, there were no payments for the Capacity Building sub-categories of \u0026lsquo;Home Living\u0026rsquo; and \u0026lsquo;Lifelong Learning.\u0026rsquo; Recent research highlights the expectations and desires young people with CP harbour to engage in diverse facets of adult life, including advancing education and achieving independent living.\u003csup\u003e23,24,26,48,49\u003c/sup\u003e Given the critical developmental stage, it was anticipated that there would be targeted funding to support these areas. Lack of emphasis on these sub-categories could be reflective of the ongoing support that families play in the lives of these young people with CP. Notably, 87.5% of an Australian cohort of adults with CP aged 18 to 25 years, reported living in their parental home, compared to 48.2% of their similarly aged peers.\u003csup\u003e48\u003c/sup\u003e This trend is also evident in other international studies.\u003csup\u003e33,47\u003c/sup\u003e The absence of documented funding in these sub-categories suggests a support gap which could impede the ability of these young adults to fully participate in society. Addressing these gaps is critical for promoting equity and ensuring that all individuals with CP can achieve their full potential.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eGlobal Challenges and Disparities in Disability Support: An Analysis of NDIS and International Practices\u003c/h2\u003e \u003cp\u003eThe analysis of NDIS Capacity Building funding allocations across different age and diagnostic groups highlights issues of concern, that align with global trends in support for people with disability. From an international perspective, many high-income countries face similar challenges in supporting young adults with disabilities in their transition to employment and independent living. For instance, in the United States, the Individuals with Disabilities Education Act (IDEA) provides transition services but often falls short in employment outcomes, mirroring the gaps seen in NDIS support utilisation.\u003csup\u003e50\u003c/sup\u003e In Europe, despite initiatives such as the European Disability Strategy, young adults with disabilities still experience higher unemployment rates and barriers in accessing vocational training\u003csup\u003e51\u003c/sup\u003e and lifelong learning opportunities.\u003csup\u003e4\u003c/sup\u003e This global pattern highlights the need for more accessible support systems, greater awareness of the specific needs and rights of individuals with disabilities, and targeted, effective interventions to ensure that young adults with disabilities can achieve their full potential in employment and independent living. International collaboration and the sharing of best practices can help refine and enhance support mechanisms, creating a more inclusive and effective global framework for disability support. By learning from international experiences and implementing comprehensive policies, nations can better address the systemic challenges faced by young adults with disabilities, fostering environments where they can thrive and contribute meaningfully to society.\u003c/p\u003e \u003cp\u003eSeveral limitations must be considered when interpreting these findings. Data used in this study were derived from publicly available quarterly NDIS dashboards, compiled by the NDIA. There may be inaccuracies in the descriptions of plan allocations or the processes of data collection, entry, and reporting. The extent and impact of these potential inaccuracies are unknown.\u003c/p\u003e \u003cp\u003eNDIS data on participant function are crude (e.g., 48% of NDIS participants with CP purported to have a 'low' level of function),\u003csup\u003e14\u003c/sup\u003e making it difficult to interpret data against standardised functional classification systems used in populations with CP (e.g., GMFCS,\u003csup\u003e39\u003c/sup\u003e manual ability classification system and/or communication function classification system,\u003csup\u003e52\u003c/sup\u003e) and hindering a nuanced analysis of how function might influence the type and extent of supports accessed. Using validated measures may enable meaningful evaluation of outcomes, and help align the NDIS with global standards, ensuring participants receive care that is both comprehensive and comparable to other international leading healthcare systems.\u003c/p\u003e \u003cp\u003eA total of 17,680 active participants with CP as their primary diagnosis were enrolled in the NDIS scheme in the June 2023 quarter. Despite data for participants with CP identified as a secondary diagnosis being available, that data is not age-group specific, and was not able to be included. Additionally, it is acknowledged that the NDIS includes only approximately 48% of the estimated 37,000 individuals currently living with CP in Australia.\u003csup\u003e19\u003c/sup\u003e A recent publication by the authors describe that some young adults with CP with higher functional capacity are reluctant to apply for NDIS support, perceiving themselves to be 'not disabled enough,\u0026rsquo; despite experiencing impairments that limit their function and participation in everyday life\u003csup\u003e23,53\u003c/sup\u003e Data from individuals who are not NDIS participants are not considered in this study, potentially skewing the findings and leading to an underestimation of support needs for young adults with CP. Aligning data collection and analysis methods with international standards may improve the comparability of findings and contribute to global efforts to address health inequities for people with disabilities.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eProposed NDIS Legislative Changes\u003c/h2\u003e \u003cp\u003eDespite demonstrated need, current proposed legislative changes to the NDIS (NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024) may undermine gains by shifting focus from Capacity Building and participant goal-based funding to 'flexible budgets\u0026rsquo;. This could force participants to prioritise basic daily supports over skill-building, limiting their potential for active societal participation and departing from the original principles of the NDIS. Submissions from stakeholders across Australia have highlighted concerns that the Bill risks leading to unintended consequences on participant welfare and reduced access to supports. These potential changes may exacerbate existing inequities and undermine efforts to provide comprehensive, person-centred care. Ongoing advocacy from the Australian community will be critical to ensuring that people with disabilities continue to have access to supports needed to enable them to \u0026lsquo;live an ordinary life.\u0026rsquo;\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003e Funding for Capacity Building supports for NDIS participants with CP increased with age, identifying variations in the type and allocation of supports compared to peers with Down syndrome and SCI. These findings emphasise the necessity of tailored approaches to funding and supports for people with disability, where individual needs of participants are considered alongside lifespan stage and participation preferences. For policymakers and health practitioners, this study highlights the importance of developing and implementing practical measures to ensure equitable resource distribution to enhance the quality of life and participation of all individuals with disabilities. The insights from this research can inform the design and implementation of more effective disability support services, contributing to better outcomes for people with disabilities worldwide.\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch2\u003eDeclaration of Interest\u003c/h2\u003e \u003cp\u003eThe authors report there are no competing interests to declare.\u003c/p\u003e \u003ch2\u003eInformed consent\u003c/strong\u003e \u003cp\u003eInformed consent is not applicable.\u003c/p\u003e \u003ch2\u003eEthical approval\u003c/strong\u003e \u003cp\u003eWe declare that Human Ethics and Consent to Participate are not applicable for this study.\u003c/p\u003e \u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eThis research project received no external funding.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eAuthors JD, SC and PM contributed to the study design. JD lead the original draft preparation, with PM and SC assisting with its refinement. All authors have reviewed and approved the final manuscript and agree to be accountable for all aspects of the work, ensuring its accuracy and integrity.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eAuthors Jacqueline Ding and Stacey Cleary are supported through the Centre of Research Excellence: CP-ACHIEVE by the NHMRC (Grant ID: APP1171758). We gratefully acknowledge the funding and research support from CP-ACHIEVE in undertaking this study.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe NDIS data presented in this study were obtained from the official NDIS website. Weblink details can be found in the reference list of the manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003e\u003cspan\u003eCRDP. Convention on the Rights of Persons with Disabilities (CRPD) | United Nations Enable [Internet]. 2022 [cited 2022 Mar 8]. 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Dev Disabil Res Rev. 2011 Nov;17(2):114\u0026ndash;29.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eMichael-Asalu A, Taylor G, Campbell H, Lelea LL, Kirby RS. Cerebral Palsy: Diagnosis, Epidemiology, Genetics, and Clinical Update. Adv Pediatr. 2019 Aug; 66:189\u0026ndash;208.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eDeloitte Access Economics. The cost of cerebral palsy in Australia in 2018 [Internet]. 2019. Available from: https://cerebralpalsystrategy.com.au/wp-content/uploads/2020/02/DAE_Cost-of-cerebral-palsy-in-2018_FINAL.pdf\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eRyan JM, Walsh M, Owens M, Byrne M, Kroll T, Hensey O, et al. Transition to adult services experienced by young people with cerebral palsy: A cross-sectional study. Dev Med Child Neurol. 2023 Feb;65(2):285\u0026ndash;93.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eManikandan M, Kerr C, Lavelle G, Walsh M, Walsh A, Ryan JM. Health service use among adults with cerebral palsy: a mixed-methods systematic review. Dev Med Child Neurol. 2022 Apr;64(4):429\u0026ndash;46.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eMcKenzie G, Shields N, Willis C. \u0026lsquo;Finding what works for me\u0026rsquo; \u0026ndash; a qualitative study of factors influencing community gym participation for young adults with cerebral palsy. Disabil Rehabil. 2023 Jun;45(12):1984\u0026ndash;91.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eDing JY, Cleary SL, Morgan PE. Participation experiences of young people with cerebral palsy in key life situations: A qualitative study. Dev Med Child Neurol. 2024 Apr;n/a(n/a).\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eCleary S, Morgan PE, Wallen M, Honan I, Shields N, Munzel FE, et al. The experiences and perceptions of participation in daily life of adolescents and young adults with cerebral palsy: a scoping review. Dev Med Child Neurol Rev. 2024. [manuscript under review].\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eBagatell N, Chan D, Rauch KK, Thorpe D. \u0026lsquo;Thrust into adulthood\u0026rsquo;: Transition experiences of young adults with cerebral palsy. Disabil Health J. 2017 Jan;10(1):80\u0026ndash;6.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eGaskin CJ, Imms C, R. Dagley G, Msall ME, Reddihough D. Successfully Negotiating Life Challenges: Learnings From Adults With Cerebral Palsy. Qual Health Res. 2021 Oct;31(12):2176\u0026ndash;93.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eQuartermaine JR, Rose TA, Auld ML, Johnston LM. Participation measures that evaluate attendance and involvement for young people aged 15 to 25 years with cerebral palsy: a systematic review. Disabil Rehabil. 2024 May;46(9):1734\u0026ndash;50.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eRyan JM, Allen E, Gormley J, Hurvitz EA, Peterson MD. The risk, burden, and management of non-communicable diseases in cerebral palsy: a scoping review. Dev Med Child Neurol. 2018 Aug;60(8):753\u0026ndash;64.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eCommonwealth. Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Final Report - Executive Summary, Our vision for an Inclusive Australia and Recommendations [Internet]. 2023 Sep [cited 2024 Feb 8]. Available from: https://disability.royalcommission.gov.au/publications/final-report-executive-summary-our-vision-inclusive-australia-and-recommendations\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eWhat types of supports can\u0026rsquo;t be funded or provided under the NDIS? | NDIS [Internet]. [cited 2024 Feb 9]. Available from: https://ourguidelines.ndis.gov.au/how-ndis-supports-work-menu/reasonable-and-necessary-supports/how-we-work-out-if-support-meets-funding-criteria/what-types-supports-cant-be-funded-or-provided-under-ndis\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eSupport budgets in your plan | NDIS [Internet]. [cited 2024 Feb 8]. Available from: https://www.ndis.gov.au/participants/using-your-plan/managing-your-plan/support-budgets-your-plan\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eJackman M, Sakzewski L, Morgan C, Boyd RN, Brennan SE, Langdon K, et al. Interventions to improve physical function for children and young people with cerebral palsy: international clinical practice guideline. Dev Med Child Neurol. 2022 May;64(5):536\u0026ndash;49.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eJacobson DNO, L\u0026ouml;wing K, Hjalmarsson E, Tedroff K. Exploring social participation in young adults with cerebral palsy. J Rehabil Med. 2019 Mar;51(3):167\u0026ndash;74.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eClark HB, Crosland KA. Social and life skills development: Preparing and facilitating youth for transition into young adults. In: Achieving permanence for older children and youth in foster care. Columbia University Press; 2009. p. 313\u0026ndash;36.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003ePao M. Conceptualization of Success in Young Adulthood. Child Adolesc Psychiatr Clin N Am. 2017 Apr;26(2):191\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eOlney S, Dickinson H. Australia\u0026rsquo;s New National Disability Insurance Scheme: Implications for Policy and Practice. Policy Des Pract. 2019 Jul;2(3):275\u0026ndash;90.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eParticipant dashboards | NDIS [Internet]. [cited 2024 Feb 8]. Available from: https://data.ndis.gov.au/reports-and-analyses/participant-dashboards\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eDatasets | NDIS [Internet]. [cited 2024 Feb 9]. Available from: https://data.ndis.gov.au/datasets\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003ePalisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997 Apr;39(4):214\u0026ndash;23.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eNDIS. NDIS Price Guide [Internet]. 2018 [cited 2023 Mar 3]. Available from: https://www.ndis.gov.au/media/348/download?attachment\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eAustralian Institute of Health and Welfare. Spinal injuries in Australia 2020-21 [Internet]. Canberra: AIHW; 2024. Available from: https://www.aihw.gov.au/reports/injury/spinal-injuries-in-australia-2020-21\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eSmith L, Morello R, Bennett M, Scope BG. \u0026lsquo;Having a go\u0026rsquo;: exploring the use of supports to make individualised living a reality. National Disability Insurance Agency; 2023 Jul.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eMorgan P, Pogrebnoy D, McDonald R. Health service experiences to address mobility decline in ambulant adults ageing with cerebral palsy. J Intellect Dev Disabil. 2014 Jul;39(3):282\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eMalbon E, Carey G, Meltzer A. Personalisation schemes in social care: are they growing social and health inequalities? BMC Public Health. 2019 Jun;19(1):805.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eLindsay S, McDougall C, Menna-Dack D, Sanford R, Adams T. An ecological approach to understanding barriers to employment for youth with disabilities compared to their typically developing peers: views of youth, employers, and job counselors. Disabil Rehabil. 2015 Apr;37(8):701\u0026ndash;11.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eDowse L, Wiese M, Dew A, Smith L, Collings S, Didi A. More, better, or different? NDIS workforce planning for people with intellectual disability and complex support needs. J Intellect Dev Disabil. 2016 Jan;41(1):81\u0026ndash;4.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003ePettersson K, Rodby-Bousquet E. Living Conditions and Social Outcomes in Adults With Cerebral Palsy. Front Neurol. 2021 Oct;12.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eImms C, Reddihough D, Shepherd DA, Kavanagh A. Social outcomes of school leavers with cerebral palsy living in Victoria. Front Neurol. 2021; 12:753921.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eDing J, Cleary S, Morgan P. Health literacy in adolescents and young adults with cerebral palsy: A mixed methods systematic review. Disabil Rehabil. 2024 Feb;1\u0026ndash;13.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eEtscheidt SL, Hernandez-Saca D, Kramarczuk Voulgarides C. Monitoring the Transition Requirements of the Individuals With Disabilities Education Act: A Critique and a Proposal to Expand the Performance Indicators. J Disabil Policy Stud. 2023 May;10442073231177407.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eAsuman D, Gerdtham UG, Alriksson-Schmidt AI, Rodby-Bousquet E, Andersen GL, Jarl J. Pain and labor outcomes: A longitudinal study of adults with cerebral palsy in Sweden. Disabil Health J. 2023 Jul;16(3):101479.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eEliasson AC, Krumlinde-Sundholm L, R\u0026ouml;sblad B, Beckung E, Arner M, \u0026Ouml;hrvall AM, et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol. 2006/06/19 ed. 2006 Jul;48(7):549\u0026ndash;54.\u003c/span\u003e\u003c/li\u003e\n \u003cli\u003e\u003cspan\u003eHenry G, Webb A, Galea C, Pearce A, Balde I, Garrity F, et al. Out-of-pocket costs for families and people living with cerebral palsy in Australia. PLOS ONE. 2023 Jul;18(7):e0288865.\u003c/span\u003e\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"cerebral palsy, disability supports, National Disability Insurance Scheme, young adults","lastPublishedDoi":"10.21203/rs.3.rs-4727702/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4727702/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eThe Australian National Disability Insurance Scheme (NDIS) aims to provide person- centred care for individuals with disabilities, promoting independence and participation in society. Young adults with cerebral palsy (CP) benefit from Capacity Building supports, which are critical for developing skills necessary across the lifespan.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003e A retrospective cross-sectional analysis was conducted using publicly available NDIS Participant and Payment datasets from the June 2023 Quarter. Data were extracted for young adults with CP aged 15\u0026ndash;34 years and characteristics and funding allocation for Capacity Building goals examined. Comparisons of Capacity Building characteristics were made between NDIS participants with CP and NDIS participants with Down syndrome and Spinal Cord Injury (SCI).\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eOverall, 99.5% (n\u0026thinsp;=\u0026thinsp;6,273) of NDIS participants aged 15\u0026ndash;34 with CP identified at least one Capacity Building goal, totalling 110,234 goals. Average annual payments for Capacity Building supports for NDIS participants with CP increased with age, from \u003cspan\u003e$\u003c/span\u003e27,000 for 15-18-year-olds to \u003cspan\u003e$\u003c/span\u003e59,000 for 25-34-year-olds. The most frequent Capacity Building goals identified by young adults with CP were \u0026lsquo;Daily Living\u0026rsquo;, \u0026lsquo;Social and Community Participation\u0026rsquo;, and \u0026lsquo;Health and Wellbeing\u0026rsquo;. The analysis highlighted variations in the type and funding allocation of Capacity Building supports accessed by young adults with CP compared to their peers with Down syndrome and SCI.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThis study emphasises variations in NDIS funding allocation for young adults with CP during the transition into adulthood; tailored funding strategies are required to meet the evolving needs of people aging with CP. Individualised goal setting and personalised supports align with international best practices for disability supports, fostering independence and enhancing quality of life. Further research is needed to explore the short and long-term outcomes of NDIS-funded supports, ensure equitable resource distribution, and advance global discussions on inclusive policies that enable full participation for people with disabilities.\u003c/p\u003e","manuscriptTitle":"Capacity Building goals in young people with cerebral palsy in Australia: Analysis of publicly available National Disability Insurance Scheme data","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-09-02 19:34:04","doi":"10.21203/rs.3.rs-4727702/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"5056904b-0233-4150-8d52-4b8ff1545cea","owner":[],"postedDate":"September 2nd, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2024-10-25T23:23:13+00:00","versionOfRecord":[],"versionCreatedAt":"2024-09-02 19:34:04","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4727702","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4727702","identity":"rs-4727702","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}