Parent coaching program for children with emerging developmental disabilities while on a waitlist for services: cost analysis from a family payer perspective - PMC Skip to main content An official website of the United States government Here's how you know Here's how you know Official websites use .gov A .gov website belongs to an official government organization in the United States. Secure .gov websites use HTTPS A lock ( Lock Locked padlock icon ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites. Search Log in Dashboard Publications Account settings Log out Search… Search NCBI Primary site navigation Search Logged in as: Dashboard Publications Account settings Log in Search PMC Full-Text Archive Search in PMC Journal List User Guide PERMALINK Copy As a library, NLM provides access to scientific literature. Inclusion in an NLM database does not imply endorsement of, or agreement with, the contents by NLM or the National Institutes of Health. Learn more: PMC Disclaimer | PMC Copyright Notice BMC Pediatr . 2026 Mar 7;26:319. doi: 10.1186/s12887-026-06610-2 Search in PMC Search in PubMed View in NLM Catalog Add to search Parent coaching program for children with emerging developmental disabilities while on a waitlist for services: cost analysis from a family payer perspective Xiao Yang Jia Xiao Yang Jia 1 The School of Public Policy, University of Calgary, 906 8 Ave SW 5th floor, Calgary, AB T2P 1H9 Canada Find articles by Xiao Yang Jia 1, ✉ , Myla E Moretti Myla E Moretti 2 The Hospital for Sick Children, Toronto, ON Canada 3 University of Toronto, Toronto, ON Canada Find articles by Myla E Moretti 2, 3 , Wendy J Ungar Wendy J Ungar 2 The Hospital for Sick Children, Toronto, ON Canada 3 University of Toronto, Toronto, ON Canada Find articles by Wendy J Ungar 2, 3 , Kristy Wittmeier Kristy Wittmeier 4 Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, MB Canada Find articles by Kristy Wittmeier 4 , Jillian H Filliter Jillian H Filliter 5 Department of Pediatrics, Dalhousie University, Halifax, NS Canada Find articles by Jillian H Filliter 5 , Maureen O’Donnell Maureen O’Donnell 6 Provincial Health Services Authority BC, Vancouver, Canada 7 Faculty of Medicine, Department of Pediatrics, University of British Columbia, Vancouver, Canada Find articles by Maureen O’Donnell 6, 7 , Faizan Khan Faizan Khan 8 CHILD-BRIGHT Network, Winnipeg, MB Canada Find articles by Faizan Khan 8 , Tamlyn Smith Tamlyn Smith 9 CHILD-BRIGHT Network, Vancouver, BC Canada Find articles by Tamlyn Smith 9 , Jennifer Zwicker Jennifer Zwicker 1 The School of Public Policy, University of Calgary, 906 8 Ave SW 5th floor, Calgary, AB T2P 1H9 Canada Find articles by Jennifer Zwicker 1 , Annette Majnemer Annette Majnemer 10 School of Physical and Occupational Therapy, McGill University, Montreal, QC Canada Find articles by Annette Majnemer 10 Author information Article notes Copyright and License information 1 The School of Public Policy, University of Calgary, 906 8 Ave SW 5th floor, Calgary, AB T2P 1H9 Canada 2 The Hospital for Sick Children, Toronto, ON Canada 3 University of Toronto, Toronto, ON Canada 4 Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, MB Canada 5 Department of Pediatrics, Dalhousie University, Halifax, NS Canada 6 Provincial Health Services Authority BC, Vancouver, Canada 7 Faculty of Medicine, Department of Pediatrics, University of British Columbia, Vancouver, Canada 8 CHILD-BRIGHT Network, Winnipeg, MB Canada 9 CHILD-BRIGHT Network, Vancouver, BC Canada 10 School of Physical and Occupational Therapy, McGill University, Montreal, QC Canada ✉ Corresponding author. Received 2025 Jul 10; Accepted 2026 Feb 2; Collection date 2026. © The Author(s) 2026 Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/ . PMC Copyright notice PMCID: PMC13081445 PMID: 41795079 Abstract Background Pre-school children with or at risk of developmental disabilities have diverse care needs in this critical period for neurodevelopment. Complexities in service delivery, wait times, and variable access can leave parents uncertain about how best to seek assistance for their children’s arising functional vulnerabilities. Despite higher costs, parents may resort to alternative private options to alleviate wait times for child development services. This study compared the services accessed and associated out-of-pocket (OOP) costs incurred by families in four Canadian provinces who engaged in a parent coaching intervention aimed at empowering parents in managing their child’s chronic disabilities with those who received usual care. Methods The cost analysis was conducted alongside the BRIGHT Coaching randomized controlled trial in Quebec, British Columbia, Nova Scotia, and Manitoba. Families were randomized by a 1:1 allocation of intervention to control and clustered by provinces. Both groups could access health, education and community services. Parent-reported service utilization and costs were collected with the Resource Use Questionnaire at baseline, 8 months (post-coaching program), and 12 months (follow-up). From a family payer perspective, services were costed, encompassing OOP costs for parents and their children. Results No statistically significant differences were observed in the median OOP costs per family between the control and intervention groups. Quebec had the highest mean OOP costs per child, while British Columbia had the highest for parents. The two-part model estimated the mean OOP costs per family over 12 months to be $2103.14 (95% CI: 1418.79, 2787.50), with the intervention group having, on average, $679.61 ( p -value > 0.05, 95% CI: -479.00, 1838.22) higher costs than the control group; province, household income and parent education level were significant covariates. Conclusions The results suggest that families of children with emerging developmental disabilities incur considerable OOP expenses. The findings highlight these families’ complex needs and financial challenges and may help inform policy decisions on improving support for this population. Trial registration ClinicalTrial.gov NCT03880383 https//clinicaltrials.gov/study/ NCT03880383 . Registration Date 2019-03-19. Supplementary Information The online version contains supplementary material available at 10.1186/s12887-026-06610-2. Keywords: Developmental disabilities, Parent coaching, Children, Cost analysis, Service use Background Children with developmental disabilities (DD) represent a particularly vulnerable population facing significant health disparities compared to their peers [ 1 ]. Developmental disabilities encompass functional limitations caused by disorders of the developing nervous system [ 2 ]; functional domains impacted include cognition, gross and fine motor performance, vision, hearing and speech, and behavior [ 2 ]. Developmental disabilities are a diverse group of chronic conditions affecting the central nervous system that typically manifest within the first five years of life, including autism spectrum disorder (ASD), cerebral palsy, attention-deficit/hyperactivity disorder (ADHD), learning disabilities and intellectual disability [ 3 , 4 ]. In Canada, estimates of the percentage of children with DD have ranged between 6 and 9% [ 5 – 7 ]. Most individuals within this group experience lifelong functional challenges [ 8 – 10 ], resulting in elevated rates of adverse physical and mental health sequelae [ 11 , 12 ]. Early childhood interventions for children diagnosed with or at risk of DD have been shown to positively influence various domains, including health [ 13 ], language and communication [ 14 – 16 ], cognitive development [ 17 ], and social-emotional growth [ 17 , 18 ]. The early childhood developmental period is critical for brain and child development, making timely access to early intervention services essential [ 19 ]. However, intervention access is often fragmented, necessitating coordination among healthcare, education, and social support sectors [ 19 – 21 ]. Families frequently encounter multiple barriers to accessing these services, including high costs, lengthy wait times, inadequate social support, limited information on available resources, mental health challenges, and societal stigma [ 22 ]. The complexity of service delivery and access can leave parents uncertain about how to seek assistance for their children’s DD [ 22 ]. Globally, service delivery models for youth with DD lack standardization, leading to substantial variability across regions and conditions, exacerbating wait times and creating gaps in care [ 23 , 24 ]. In Canada, healthcare is administered through a publicly funded system that covers only “medically necessary” services, leaving significant gaps in coverage for additional services such as prescription medications, physiotherapy, occupational therapy and medical equipment [ 25 ]; provincial and territorial healthcare authorities determine the scope of publicly funded services, leading to variations in coverage across jurisdictions [ 25 ]. Sometimes, parents may seek private alternatives for their child with DD on a long waitlist for a diagnosis or early therapeutic interventions, despite the service being publicly funded, to mitigate access challenges [ 26 ]; these services may include cognitive tests and various treatments (e.g. physiotherapy, occupational therapy). For example, wait times for diagnosis of ASD from parents’ initial concerns had been estimated to average 19 months across a survey in Canada [ 27 ] and 26 months in a Quebec survey for children with ASD or intellectual disability [ 28 ]; thus, parents of children with ASD may choose to pay out-of-pocket (OOP) for private services as a means of acquiring faster access, if they are financially capable of doing so [ 26 ]. Private insurances and OOP expenses account for approximately 30% of total healthcare expenditures [ 25 ]. Families often incur costs associated with services outside the publicly funded sector for which they may not have private insurance or sufficient private coverage; private insurance policies typically have partial reimbursements for service categories and yearly spending maximums. During the wait for a child’s developmental diagnoses, regional policies may restrict coverage for necessary services, compelling families to seek alternative solutions. While several studies [ 29 – 32 ] have examined cost-of-illness in families of children with DDs, there have been limited studies looking at this population’s range of service usage and associated costs from a family payer perspective during the child’s pre-diagnosis or waitlist period that have considered both expenses for children’s services as well as OOP expenses for parents’ coping and mental health needs. Some families may resort to services outside the publicly funded system to alleviate wait times despite the higher associated costs [ 22 ]. This poses additional equity challenges and perpetuates health disparities. One emerging solution is health coaching, which consists of structured educational programs designed to empower parents in managing their child’s chronic disabilities [ 33 ]. Coaching topics may include navigating care for their children and ways to support and be proactive in their children’s development [ 34 ]. As a result, parents may more actively pursue services and care for their child that they may have been previously unaware of. The coaching sessions can be tailored to meet individual family needs and delivered through online platforms, thereby enhancing accessibility [ 35 ]. This study was based on data collected in a randomized controlled trial (RCT). The objective of this cost analysis was to compare the reported service utilization and associated OOP costs incurred by families of children with emerging DD who were on a waitlist for diagnostic or therapeutic intervention services and were engaged in a parental health coaching intervention with those who did not. It also sought to examine potential provincial differences in access to early childhood interventions across four Canadian provinces [ 36 ]. The findings can inform policymakers on services and budget al.locations to support children with emerging DD. Methods The study was approved by the McGill University Health Centre Research Ethics Board (REB) on 2017-08-04 (Project number: 2017–3159; Local REB number: IRB00010120). Similar REB approvals had been obtained from all the other participating sites (Child Health BC, BC Children’s Hospital, UBC; Specialized Services for Children and Youth Centre; Izaak Walton Killam Health Centre). Informed consent was obtained from all participants (parents). The BRIGHT Coaching (health coaching for parents waiting for their child’s diagnosis or therapy) RCT (ClinicalTrial.gov NCT03880383 , Registration Date 2019-03-19) intervention development and implementation have been described in detail elsewhere [ 34 ], and the RCT primary outcomes manuscript is currently under review for publication. The BRIGHT Coaching CONSORT diagram is shown in Figure S1. We focused on the cost analysis and highlighted the key RCT components in this section. Study design The cost analysis was conducted alongside the BRIGHT Coaching RCT. BRIGHT Coaching aims to be a publicly funded program if implemented on a broader scale in the future. Eligible families were from four Canadian provinces (Quebec, British Columbia, Nova Scotia, Manitoba) and had children aged 1.5 to 4.5 years with emerging DD. Inclusion criteria covered families with a child on a waitlist for developmental services (medical diagnosis, therapies) or assessments (standardized developmental) at recruitment who were not starting kindergarten within the next 6 months, had regular access to the internet, were proficient in speaking and reading English or French, and were able to complete three research assessments (baseline, post-intervention, follow-up) [ 34 ]. Randomization was completed via a computer-generated algorithm, with a 1:1 allocation of intervention to control and clustered to provinces [ 34 ]. Blinding was not appropriate or possible. Parent and child measures were administered at baseline (pre-intervention), 8 months (post-intervention after 14 meetings with a coach covering the program), and 12 months post-entry (follow-up). Parents who completed at least the baseline and 8-month Resource Use Questionnaire (RUQ) and a minimum of half of the 12 coaching topics (for the intervention group (IG)) were included in the cost analysis. Parent coaching intervention and usual care study groups The BRIGHT Coaching project was developed in Canada with input from diverse stakeholders, including health professional experts, parents, parent partners, and coaches [ 34 ]. The BRIGHT Coaching intervention was based on three pillars to guide and support families: (1) TALK- to a trained coach while waiting for services/care (2) LEARN- how to support your child and promote child development via coaching sessions and online resources focussed on what to expect and how to be proactive with skill development, and (3) SHARE- connect with other Canadian parents via the online community discussion board where you can share experiences and knowledge [ 34 ]. The coaches’ responsibilities included (1) guiding families in identifying areas of developmental concerns, (2) promoting developmental stimulation and skills training to optimize development, (3) supporting families in building personal and family resilience by focusing on their own mental, physical and family dynamics challenges, and (4) providing general information regarding the range of developmental services that may be encountered, or benefit the child [ 34 ]. Coaching sessions were conducted when convenient via telephone or video calls, approximately twice a month, lasting 45 to 60 min for each session over six to seven months. Coaches had professional and/or educational backgrounds (i.e., social worker, psychologist, early childhood educator) in young child development. Families in the IG could continue to access all available services to them during the coaching program. The control group (CG) received usual and locally available care, which could be highly variable between provinces [ 34 ]. This primarily involved waiting for developmental services, varied intervention approaches, and privately paid therapies parents may seek for their children [ 34 ]. Data collection and measures The measures relevant to the cost analysis were the demographics and profile surveys, the Vineland Adaptive Behavior Rating Scale 3.0 [ 37 ], and the RUQ [ 38 ]. The profile survey asked parents about their child’s diagnosis at recruitment; it included the following response options: (1) awaiting diagnosis, (2) does not have DD, (3) ADHD, (4) ASD, (5) cerebral palsy, (6) down syndrome, (7) epilepsy, (8) fetal alcohol spectrum disorder, (9) global developmental delay, (10) intellectual disability, 11) learning disability, 12) spina bifida, 13) prefer not to say, and 14) other. The Vineland Adaptive Behavior Rating Scale 3.0 [ 37 ], was collected by telephone at baseline as a measure of children’s functioning levels; its validity and reliability have been established in children with DD [ 37 ]. Data on children’s service use across multiple sectors and parental measures were collected from parent respondents using the RUQ [ 38 ]. The RUQ is a validated instrument used in studies of children with ASD and other neurodevelopmental disorders [ 39 , 40 ] and was adapted for this study. The RUQ [ 38 ] was collected at three time points, capturing service utilization and family OOP expenses. Trained interviewers administered the RUQ at all three time points. Costing In the RUQ, parents were asked to identify services and resources they perceived to be related to their children’s emerging DD or comorbidities. The baseline assessment encompassed the previous 8 months, when there was an emerging concern about development, and the child was referred for specialty diagnosis or early therapeutic interventions. Eight-month (post-intervention) and 12-month (follow-up) assessments had 8- and 4-month recall periods, respectively. Reported child services were categorized as: speech-language therapies (SLP); behavioral-related therapies (i.e., applied behavior analysis, support with challenging behaviors, relationship-based interventions); occupational therapy (OT); physiotherapy (PT); additional health professional services; child-focussed recreational activities; special products or materials; special diets; medications; and respite care. Additional healthcare services included public and privately funded services, such as other medical specialists, lab testing, social workers, psychologists and other services not captured in other RUQ sections. Special products or materials (e.g. sensory devices) encompassed all items related to the child’s developmental challenges; the types and specifics of these products were not captured in the RUQ other than applicable costs. For each service, parents reported the frequency of use, duration of use, payer of the service (government, OOP, subsidy, private insurance, or some combination) and amount of OOP cost. The total OOP expenses for each service for each recall period were calculated by multiplying the reported frequency of service (i.e., number of sessions per week) by the OOP costs per session and by the total duration of service (i.e., number of months) to determine the total cost for that service for the period in question. Reported OOP costs included service payments, transportation, and other relevant costs (i.e., purchase of materials or supplies). Parents also reported the resources they used to cope with their child’s developmental challenges and applicable costs; services included medications, physician visits (e.g., family doctors, psychiatrists), psychologists, clinical social workers, support groups, and other services. The total OOP cost per family over the 12-month study period was estimated by adding the cost of services reported at 8 months and 12 months. A mean cost per family over the 12-month study period was calculated for the CG and IG. All costs reported were in 2019 Canadian dollars (1 CAD = 0.75 USD). Family-payer costs were characterized by skewness and high variances, commonly observed in cost distributions. Missing data Conservative decision rules were applied to missing duration, frequency, and OOP costs per visit. Missing frequency and duration data were recoded to the smallest interval selection for the questionnaire, e.g., “once during the time period” or “duration of 1 month.” Missing OOP cost values were coded as zero as a conservative rule due to variabilities and uncertainties in public and private coverages for families. Statistical analysis Descriptive analyses of the demographic characteristics of RUQ respondents, service use and costs were completed. The demographic characteristics of participants were compared between groups using a t-test for continuous variables and a chi-squared test for categorical variables. Healthcare cost data are typically characterized by a significant proportion of zero-cost observations for people who have not used resources in a set period and a skewed distribution for positive costs [ 41 ]. The Wilcoxon Rank Sum Test was used to compare medians of total costs between CG and IG. Family payer costs were investigated further using two-part regression models [ 42 – 44 ] to address clumping at zero and many positive cost values [ 44 ]. In the first part, the probability of family payer costs being positive is estimated using a probit model; the second part uses a gamma distribution with a log link, estimating costs conditional on incurring positive costs. The two-part model had the same covariates for each part and was adjusted for province, randomization, Vineland Adaptive Behavioral Composite (ABC) score, child’s age, household income and education. Results Sample characteristics Three hundred and six families were recruited into the RCT, and the first four participants in each province were assigned to IG to ensure the feasibility of data collection procedures and coaches’ fidelity; 228 families completed the baseline and 8-month RUQ and at least half of the coaching topics (IG), while 226 families completed the 12-month RUQ. Table 1 presents the number of families from each province who completed the respective RUQ at the 8- and 12-month marks. Over 70% of the children in the sample were awaiting diagnosis, with approximately 16% diagnosed with ASD; all other diagnostic categories accounted for less than 10%. No significant differences were found between CG and IG in terms of the children’s demographic characteristics or Vineland ABC scores. Over 65% of the sample had ABC scores more than one standard deviation below the population mean. The average age of children in the CG and IG was 2.97 and 2.90 years, respectively. In both groups, over 80% of parents had at least some college or technical school education. Table 2 provides a comparison of the demographic characteristics between the CG and IG. Table 1. Number of families who completed the RUQ at 8 and 12 months by province 8-month 12-month Control Intervention Control Intervention QC 25 19 25 19 BC 57 51 57 50 NS 16 13 15 13 MB 22 25 22 25 Total 120 108 119 107 Open in a new tab RUQ Resource Use Questionnaire, QC Quebec, BC British Columbia, NS Nova Scotia, MB Manitoba Table 2. Key demographic characteristics of participants who completed 8-month RUQ Characteristic Control Intervention p -value Child’s age at consent 2.97 (0.79) 2.9 (0.80) 0.48 Missing = 0 Child’s sex assigned at birth (n, %) Male 91 (75.8) 77 (71.3) 0.24 Female 27 (22.5) 31 (28.7) Not specified 2 (1.7) 0 (0) Missing = 0 Respondent’s highest level of education (n, %) High school diploma or less 13 (10.8) 12 (11.1) 0.98 Some college or technical school 16 (13.3) 11 (10.2) Completed technical school/associate degree 17 (14.2) 18 (16.7) Bachelor’s 42 (35.0) 36 (33.3) Master’s/ graduate/professional degree/doctorate 29 (24.2) 25 (23.1) Not specified/other 2 (1.7) 5 (4.6) Missing 1 (0.8) 1 (0.9) Respondent’s employment (n, %) Full Time 43 (35.8) 44 (40.7) 0.81 Part Time 23 (19.2) 18 (16.7) Stay at home 28 (23.3) 24 (22.2) Other a 26 (21.7) 22 (20.4) Missing = 0 Household income (n, %) Less than 50,000 35 (29.2) 19 (17.6) 0.33 50,000 to 99,999 33 (27.5) 35 (32.4) 100,000 and up 43 (35.8) 39 (36.1) Not specified/prefer not to say 6 (5.0) 13 (12.0) Missing 3 (2.5) 2 (1.9) Open in a new tab a Other includes temporarily laid off, sick leave, maternity leave, looking for work/unemployed, retired, temporarily or permanently disabled, stay at home, volunteer and student RUQ Resource Use Questionnaire Family payer costs The RUQ captured data on service use and associated OOP costs to families of children with emerging DD. The cost distribution was right-skewed, with a small proportion of families reporting high costs across several resource categories. A wide variation in OOP costs was observed across provinces and groups during the early childhood period when children were on waitlists for diagnoses or therapies. At baseline, no statistically significant differences in median family payer costs were found between the CG and IG (Table 3 ). The mean baseline cost per family (covering the previous 8 months) was $622 (SD = 2959) for the CG and $824 (SD = 2613) for the IG. The QC IG reported the highest mean OOP costs per family, at $2825 (SD = 5619), while the BC CG had the next highest mean of $1050 (SD = 4229) at baseline. Approximately 53% of all families reported zero OOP costs at baseline (before the trial). Table 3. Baseline (before the trial) out-of-pocket costs per family by province and study group Baseline total costs (mean, SD) Family payer Control ( n = 120) Median IQR Intervention ( n = 108) Median IQR p -value All provinces 622 (2959) 0 247 824 (2613) 34 395 0.11 QC 409 (840) 10 400 2825 (5619) 384 2024 BC 1050 (4229) 0 247 498 (1088) 0 370 NS 162 (327) 0 173 202 (415) 0 277 MB 87 (182) 0 8 294 (558) 28 242 Open in a new tab SD standard deviation, IQR interquartile range, QC Quebec, BC British Columbia, NS Nova Scotia, MB Manitoba. All costs in 2019 CAD During the 12-month study period, approximately 73% of all families reported OOP expenses. Both study groups incurred higher OOP costs over the 8-month study period than the 8 months prior to baseline. Figure 1 illustrates the number of families incurring OOP expenses, categorized by cost ranges and study group. Over the 12-month period, no statistically significant differences were observed between the CG and IG in terms of median OOP expenses per family for both children’s services and parents’ resource use. Fig. 1. Open in a new tab Number of families that incurred out-of-pocket expenses by study group and cost range over 12 months The mean OOP expenses for children’s services were $1635 (SD = 5483) in the CG and $2216 (SD = 5991) in the IG (Table 4 ). QC reported the highest mean OOP expenses per child in both the CG and IG, with costs of $4324 (SD = 11006) and $6531 (SD = 12653), respectively. Mean children’s OOP costs were higher in the IG than in the CG in QC and BC, while the CG was higher in NS and MB. Table 4. Total 12-month out-of-pocket costs per person for children and parents Children’s Resource Use Control Intervention Province n Mean (SD) Median Maximum n Mean (SD) Median Maximum p -value All 119 1635 (5483) 154 43,706 107 2216 (5991) 234 52,199 0.38 QC 25 4324 (11006) 298 43,706 19 6531 (12653) 296 52,199 BC 57 1043 (2540) 96 15,180 50 1849 (2941) 243 10,171 NS 15 684 (1279) 118 3843 13 291 (889) 0 3224 MB 22 760 (1095) 224 3853 25 672 (944) 216 2557 Parents’ Resource Use Mean (SD) Median Maximum Mean (SD) Median Maximum All 119 106 (508) 0 4919 107 240 (1228) 0 11,529 0.46 QC 25 72 (273) 0 1297 19 29 (116) 0 504 BC 57 163 (699) 0 4919 50 455 (1770) 0 11,529 NS 15 6 (15) 0 48 13 0 0 120 MB 22 65 (200) 0 865 25 89 (257) 0 1124 Open in a new tab SD standard deviation, QC Quebec, BC British Columbia, NS Nova Scotia, MB Manitoba. All costs in 2019 CAD Parent-reported OOP costs for coping with their child’s emerging DD accounted for approximately 8% of the total reported family OOP expenses during the 12-month study period. The mean OOP expenses for parents’ coping resources were $106 (SD = 508) in the CG and $240 (SD = 1228) in the IG. BC had the highest mean OOP costs for parents, with expenses of $163 (SD = 699) in the CG and $455 (SD = 1770) in the IG (Table 4 ). The most frequently reported cost categories for parents were psychologists and counselling, with one family reporting $12,000 in psychologist services. Prescription medications were also commonly reported by parents who utilized resources for coping. Service categories and costs by province for children Within provinces, different types of services used and volumes of service utilization led to widely varying OOP costs. Quebec In the CG, the most frequently reported services at baseline included SLP, special products/materials and medications, all at 20% or more of the sample (Table 5 ). At 8 months and 12 months, SLP and special products/materials continued to be the most frequently reported services, with special products/materials reaching 60% of the sample at 8 months. Several service categories were over $1000 in terms of mean cost per child, including SLP, behavioral therapies, other healthcare services, special products/materials, and special diets. SLP totalled the highest costs for the group over the 12-month study period, followed by behavioral therapies, both exceeding $30,000. Table 5. Quebec mean out-of-pocket cost per child for children’s services among those reporting use by service category and time point Service* Baseline (total, number of families) 8-month (total, number of families) 12-month (total, number of families) Control ( n =25) Intervention ( n =19) Control ( n =25) Intervention ( n =19) Control ( n =25) Intervention ( n =19) n (%) Mean cost per child n (%) Mean cost per child n (%) Mean cost per child n (%) Mean cost per child n (%) Mean cost per child n (%) Mean cost per child SLP 7 (28.0) 738 2 (10.5) 3891 6 (24.0) 2234 7 (36.8) 722 5 (20.0) 3970 7 (36.8) 541 OT/PT 2 (8.0) 265 3 (15.8) 503 3 (12.0) 602 6 (31.6) 875 0 (0) 0 4 (21.1) 153 Behavioral therapies 0 (0) 0 4 (21.1) 8868 1 (4.0) 30745 4 (21.1) 19268 1 (4.0) 384 3 (15.8) 4996 Other healthcare 2 (8.0) 595 3 (15.8) 1557 2 (8.0) 2412 2 (10.5) 3619 2 (8.0) 327 1 (5.3) 2152 Special products /materials 5 (20.0) 240 3 (15.8) 970 15 (60.0) 1799 6 (31.6) 426 11 (44.0) 318 11 (57.9) 127 Recreational activities 0 (0) 0 0 0 2 (8.0) 363 0 (0) 0 0 (0) 0 0 (0) 0 Medications 5 (20.0) 436 4 (21.1) 199 4 (16.0) 660 5 (26.3) 196 0 (0) 0 1 (5.3) 259 Special diet 1 (4.0) 1781 0 (0) 0 0 (0) 0 1 (5.3) 1537 1 (4.0) 1230 1 (5.3) 769 Respite 0 0 0 (0) 0 0 (0) 0 0 (0) 0 0 (0) 0 1 (5.3) 73 Open in a new tab SLP speech language pathologist, OT/PT occupational therapy/physiotherapy. All costs in 2019 CAD In the IG, behavioral therapies and medications were services reported by over 20% of families at baseline. SLP, OT/PT, and special products/materials were the most frequently reported services over the study period, with 57.9% of families reporting purchases of special products/materials at 12 months (Table 5 ). Behavioral therapies and medications were also frequently reported at 8 months (> 20%). High-cost services (>$1000 mean cost per child) included SLP, behavioral therapies, other healthcare services (e.g., psychoeducator, optician), and special diets (e.g. nutritional supplements). Behavioral therapies were the highest total cost category over the 12-month study period, at over $80,000. British Columbia In the CG, the most frequently reported services at baseline included SLP, other healthcare services, and materials, each reported by more than 10% of the sample (Table 6 ). Over the study period (8- and 12-month follow-ups), other healthcare services, materials, and medications were reported by more than 10% of families. SLP, behavioral therapies, and other healthcare services exceeded $1000 in mean costs per child. Other healthcare services were the highest cost category over the study period, totaling over $35,000; this category included services such as autism assessments, supported child development programs, and psychology services. Table 6. British Columbia total out-of-pocket costs for children’s services among those reporting use by service category and time point Service* Baseline (total, number of families) 8-month (total, number of families) 12-month (total, number of families) Control (n=57) Intervention (n=51) Control (n=57) Intervention (n=51) Control (n=57) Intervention (n=50) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) SLP 7 (12.3) 2132 8 (15.7) 505 5 (8.8) 1764 14 (27.5) 1227 5 (8.8) 848 8 (16.0) 1550 OT/PT 2 (3.5) 376 4 (7.8) 952 3 (5.3) 202 4 (7.8) 644 2 (3.5) 40 4 (8.0) 158 Behavioral therapies 3 (5.3) 416 0 (0) 0 3 (5.3) 1545 5 (9.8) 3172 1 (1.8) 115 1 (2.0) 3057 Other healthcare 6 (10.5) 5050 4 (7.8) 226 10 (17.5) 3241 9 (17.6) 3327 1 (1.8) 4500 2 (4.0) 188 Special products/materials 8 (14.0) 166 10 (19.6) 278 10 (17.5) 154 10 (19.6) 645 11 (19.3) 123 14 (28.0) 239 Recreational activities 0 (0) 0 0 (0) 0 1 (1.8) 50 0 (0) 0 2 (3.5) 615 0 (0) 0 Medications 5 (8.8) 162 5 (9.8) 80 3 (5.3) 365 6 (11.8) 485 6 (10.5) 179 8 (16.0) 110 Special diet 2 (3.5) 466 0 (0) 0 1 (1.8) 615 0 (0) 0 1 (1.8) 307 0 (0) 0 Open in a new tab *No respite out-of-pocket expenses were reported SLP speech language pathologist, OT/PT occupational therapy/physiotherapy. All costs in 2019 CAD In the IG, SLP and materials were the most frequently reported services at baseline (each reported by more than 10% of families) (Table 6 ). Over the study period, the most frequently reported services included SLP, other healthcare services, materials, and medications. High-cost services (> $1000 mean cost per child) included SLP, behavioral therapies, and other healthcare services. At the 8-month follow-up, behavioral therapies and other healthcare services had mean costs exceeding $3000 per child. Similar to the CG, other healthcare services were the highest cost category over the study period, totaling over $30,000. Notably, psychologist visits accounted for over 80% of the total costs in the other healthcare services category across the entire BC sample. Nova Scotia In the CG, across the three study time points, SLP, OT/PT, special products/materials, other healthcare services and medications were categories with > 10% of families reporting use (Table 7 ). Special products/materials were the most frequently reported cost category at all three time points, reaching over 30% at 12 months. Behavioral therapies were the highest cost category over the study period. Table 7. Nova Scotia total out-of-pocket costs for children’s services among those reporting use by service category and time point Service* Baseline (total, number of families) 8-month (total, number of families) 12-month (total, number of families) Control (n=16) Intervention (n=13) Control (n=16) Intervention (n=13) Control (n=15) Intervention (n=13) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) SLP 3 (18.8) 235 3 (23.1) 400 2 (12.5) 1130 1 (7.7) 96 1 (6.7) 730 0 (0) 0 OT/PT 1 (6.3) 250 2 (15.4) 385 0 0 1 (7.7) 99 0 (0) 0 1 (7.7) 24 Behavioral therapies 1 (6.3) 150 0 (0) 0 1 (6.3) 3843 0 0 0 (0) 0 1 (7.7) 400 Other healthcare 0 (0) 0 0 (0) 0 2 (12.5) 826 1 (7.7) 2800 1 (6.7) 59 0 (0) 0 Special products/ materials 3 (18.8) 287 4 (30.8) 129 4 (25.0) 81 1 (7.7) 336 5 (33.3) 177 2 (15.4) 63 Medications 0 (0) 0 1 (7.7) 27 0 (0) 0 0 0 2 (13.3) 87 0 (0) 0 Open in a new tab *No out-of-pocket expenses reported for recreational activities, special diet and respite care SLP speech language pathologist, OT/PT occupational therapy/physiotherapy. All costs in 2019 CAD In the IG, over the three time points, SLP, OT/PT, and special products/materials were the most frequently reported services (> 10%), with special products/materials reaching over 30% at baseline (Table 7 ). Other healthcare services were the highest cost category over the study period. In the other healthcare services category for the NS sample, psychologist visits comprised nearly the entirety of this category at 98.6% of reported costs. Manitoba In the CG, special products/materials were the most frequently reported service across all three time points, reaching over 40% at 8 months; SLP, OT/PT, and medications were other service categories that exceeded 10% of families during the study period (Table 8 ). Special products/materials were the highest reported total cost category over the study period. Table 8. Manitoba total out-of-pocket costs for children’s services among those reporting use by service category and time point Service* Baseline (total, number of families) 8-month (total, number of families) 12-month (total, number of families) Control (n=22) Intervention (n=25) Control (n=22) Intervention (n=25) Control (n=22) Intervention (n=24) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) n (%) Mean cost per child ($) SLP 0 (0) 0 1 (4.0) 760 3 (13.6) 699 4 (16.0) 397 3 (13.6) 459 2 (8.3) 86 OT/PT 0 (0) 0 0 (0) 0 2 (9.1) 172 4 (16.0) 95 3 (13.6) 329 1 (4.2) 10 Behavioral therapies 1 (4.5) 200 0 (0) 0 0 (0) 0 3 (12.0) 316 0 (0) 0 1 (4.2) 480 Other healthcare 0 (0) 0 1 (4.0) 197 0 (0) 0 1 (4.0) 39 1 (4.5) 3843 3 (12.5) 118 Special products/ materials 5 (22.7) 320 10 (40.0) 538 9 (40.9) 469 10 (40.0) 255 7 (31.8) 149 6 (25.0) 414 Recreational activities 0 (0) 0 0 (0) 0 1 (4.5) 49 1 (4.0) 1076 0 (0) 0 3 (12.5) 243 Medications 2 (9.1) 54 6 (24.0) 131 6 (27.3) 341 3 (12.0) 660 3 (13.6) 219 3 (12.5) 257 Diet 0 (0) 0 0 (0) 0 0 (0) 0 4 (16.0) 401 0 (0) 0 3 (12.5) 545 Open in a new tab *No out-of-pocket expenses reported for respite care SLP speech language pathologist, OT/PT occupational therapy/physiotherapy. All costs in 2019 CAD Similar to the CG, special products/materials were also the most frequently reported service in the IG across all time points, reaching 40% at baseline and 8 months (Table 8 ); SLP, OT/PT, behavioral therapies, other healthcare services, recreational activities, medications and special diets were other categories that exceeded 10% during the study period. Special products/materials were the category with the highest total cost reported over the study period. Regression analysis Factors associated with OOP costs were analyzed in a two-part model, which estimated the mean OOP costs per family over 12 months to be $2103.14 (95% CI: 1418.79, 2787.50). The model, combining both parts, estimated the IG to incur $679.61 (95% CI: -479.00, 1838.22), higher OOP costs compared to the CG, although this difference was not statistically significant ( p -value > 0.05). In the probit model, household income emerged as the only significant covariate ( p -value < 0.05) (Table 9 ), suggesting a higher probability of incurring non-zero OOP costs among families with higher income levels. Additionally, the generalized linear model (GLM) identified province and education as statistically significant covariates ( p -value < 0.05) (Table 9 ), highlighting the impact of geographic location on varying service funding and a positive correlation between parent education level and OOP costs. Table 9. Results from two-part model for total out-of-pocket expenditures over 12 months Variables Two-part model Probit GLM Coefficients Province -0.149 -0.595* Randomization 0.01 0.285 Vineland score -0.006 -0.001 Income 0.075* 0.062 Education 0.013 0.149* Age -0.015 -0.157 Open in a new tab *Statistical significance at 5% level GLM general linear model Discussion This study examined the OOP expenses incurred by families with children with emerging DD in the provinces of QC, BC, NS and MB who were on a waitlist for services and supports. Families were randomized to either a CG or an IG receiving a coaching program, which may have influenced their access to services. Our analysis revealed no statistically significant differences in median OOP costs between the CG and IG over the 12-month study period. Specifically, the mean OOP expenses per child were $1635 for the CG and $2216 for the IG, while parental costs averaged $106 and $240, respectively. The two-part model estimated an overall mean OOP cost per family of $2103.14, with the IG incurring an additional $679.61 compared to the CG ( p -value > 0.05). These findings align with those of Genereux et al., who reported an annual median OOP cost of $2871 for children with intellectual developmental disorders in BC [ 29 ] and Tsiplova et al., who found mean annual OOP costs of $3046 and $2560 for preschool children with ASD in New Brunswick and Nova Scotia, respectively [ 39 ]. A wide range of services contributed to the OOP costs in our sample, many of which were not covered by Canada’s public healthcare system. High-cost categories included behavioral therapies, SLP treatments, and psychological services, with these expenses concentrated among a small subset of families. Our results are consistent with those of Russell et al., who found that children at risk for DD had higher utilization of allied health services, resulting in greater financial burdens compared to their peers not at risk [ 45 ]. Moreover, many families reported purchasing special materials or products, reflecting the financial burden associated with seeking appropriate support for their children. Tsiplova et al. similarly reported that 36–79% of families incurred OOP expenses for SLP, additional services, behavioral therapies, and the purchase of materials [ 39 ]. More than 70% of families in our study reported OOP expenses during the 12-month study period. Statistically significant differences in OOP costs were observed across provinces, with QC showing the highest average costs. This regional variation may reflect differences in service availability, time on the waitlist for services, accessibility, provincial policies regarding DD, and potential disparities in the medical profiles of children across provinces. Previous studies have documented differences in the provision of services and supports across regions, with barriers to access including issues with applications, eligibility, and program design [ 46 – 48 ]. These regional disparities highlight the complexity of service access and the resulting variation in OOP expenditure across provinces. Our analysis also explored several factors that may influence OOP expenses. However, it is important to note that we only captured the presence or absence of services, which may not accurately reflect the needs of children who could not access support. Some families may be unable to afford services or face long waitlists, resulting in unmet needs [ 24 , 49 , 50 ]. In our study, household income was the only significant covariate in the probit model, indicating that wealthier families were more likely to incur OOP costs. This suggests that higher-income families may have an advantage in accessing private services or additional resources not covered by the public healthcare systems. In the GLM model, the province of residence and parent education level were significant covariates, highlighting the influence of education level and regional differences in service funding and availability in shaping OOP costs. The two-part model further suggested that the IG incurred higher OOP expenses, albeit not statistically significant, potentially due to increased parental awareness and competency of seeking available services to meet their children’s needs outside of public funding as a result of the coaching program. Early intervention programs are critical for families of children with DD, as they can improve a range of child and family outcomes [ 51 , 52 ]; thus, some parents may actively seek OOP options while on a long waitlist for public services. Families in provinces with more comprehensive funding or shorter waiting times for services may face lower costs than those in regions with more limited access. This study had several limitations. First, the initial 16 recruited participants were not randomized, as they were part of a pilot study to ensure the feasibility of the coaching intervention procedures. Their data was included in the IG analysis. Although the RCT design ensured a balanced demographic sample, the smaller sample sizes in QC, NS, and MB may limit the generalizability of the findings, especially given the heterogeneity of the populations in the provinces. However, most participants were awaiting a formal diagnosis at baseline, and no significant differences in Vineland ABC scores were detected across provinces. This suggested that the children’s developmental profiles may be similar despite regional differences in OOP expenses. Furthermore, recall bias could have affected cost estimates in both directions, leading to either underreporting or overreporting of OOP expenses. It is also important to note that this study focused solely on the family payer cost analysis; separate reports will assess the effectiveness of the parent coaching program in terms of child and parent health outcomes, parental time losses to caregiving and public payer costs. In Canada’s publicly funded healthcare system, many services necessary for children with emerging DD remain outside the scope of public coverage or have substantial waitlists, placing a significant financial burden on affected families. Future research could explore the long-term impacts of parent coaching interventions, evaluate the effects of regional policy on service access, and examine the broader financial implications, including public payer and societal costs, of supporting children with DD. Conclusion Overall, this study highlighted the considerable OOP expenses faced by families of children with emerging DD, with no significant differences observed between the CG and IG. The findings underscore the complexity of financial challenges experienced by these families, with income, regional factors and parents’ education level playing roles in shaping OOP expenditures. Further research is needed to investigate the underlying reasons for regional disparities in service access and their long-term implications for family well-being and access to essential services. Supplementary Information Supplementary Material 1. (38.7KB, docx) Supplementary Material 2. (32.6KB, docx) Acknowledgements Among the co-authors, AM, JF, KW, and MO are principal investigators of the BRIGHT Coaching RCT and parent-partners include FK and TS. We are indebted to our research coordinator Hana MacDougall for her assistance in recruitment and data collection. We are extremely grateful to our study participants (caregivers) for their commitment to the program and research requirements. Abbreviations ABC Adaptive Behavioral Composite ADHD Attention-deficit/hyperactivity disorder ASD Autism spectrum disorder BC British Columbia CG Control group DD Developmental disabilities GLM General linear model IG Intervention group IQR Interquartile range MB Manitoba NS Nova Scotia OOP Out-of-pocket OT Occupational therapy PT Physiotherapy QC Quebec RCT Randomized controlled trial REB Research Ethics Board RUQ Resource Use Questionnaire SD Standard deviation SLP Speech language therapies Authors’ contributions XYJ: conceptualization, data curation, formal analysis, methodology, software, investigation, visualization, writing-original draft, writing-review & editing. MM: conceptualization, methodology, writing-review & editing. WU: conceptualization, methodology, writing-review & editing. KW: conceptualization, writing-review & editing. JF: conceptualization, writing- review & editing. MO: conceptualization, writing-review & editing. FK: validation, writing-review & editing. TS: validation, writing-review & editing. JZ: conceptualization, methodology, project administration, supervision, writing-review & editing. AM: conceptualization, funding acquisition, methodology, project administration, supervision, writing-review & editing. All authors have read and approved of this manuscript. Funding The randomized controlled trial was supported by the Canadian Institutes of Health Research (CIHR - SCA- 145104) funding to the CHILD-BRIGHT SPOR Network (Child Health Initiatives Limiting Disability - Brain Research Improving Growth and Health Trajectories) as well as Network funding partners the BC Children’s Hospital Foundation, the Children’s Hospital Research Institute of Manitoba, the Montreal Children’s Hospital Foundation, the IWK Health Centre, Research Manitoba, and Sunny Hill Health Centre. Data availability The data that support the findings of this study are available from Annette Majnemer ( [[email protected]](mailto: [email protected]) ) upon reasonable request. Declarations Ethics approval and consent to participate The study was approved by the McGill University Health Centre Research Ethics Board (REB) on 2017-08-04 (Project number: 2017–3159; Local REB number: IRB00010120). Similar REB approvals have been obtained from all the other participating sites (Child Health BC, BC Children’s Hospital, UBC; Specialized Services for Children and Youth Centre; Izaak Walton Killam Health Centre). Informed consent was obtained from each participant (parents). All study procedures were in accordance with the ethical standards of the Declaration of Helsinki. Consent for publication Not applicable. Competing interests The authors declare no competing interests. Footnotes Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. References 1. Global report on children with developmental disabilities. [Cited 2025 Jan 28]. Available from: https://www.who.int/publications/i/item/9789240080232 2. Countries I, of M (US.) C on NSD in D. Developmental Disabilities. In: Neurological, Psychiatric, and Developmental Disorders: Meeting the Challenge in the Developing World. National Academies Press (US); 2001 [Cited 2024 Oct 29]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK223473/ [ PubMed ] 3. Schalock RL, Luckasson R, Tassé MJ. An Overview of Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports (12th ed.). Am J Intellect Dev Disabil. 2021;126(6):439–42. [ DOI ] [ PubMed ] 4. CDC. Child Development. 2025. Developmental Disability Basics. [Cited 2025 June 20] Available from: https://www.cdc.gov/child-development/about/developmental-disability-basics.html 5. Arim RG, Miller AR, Guèvremont A, Lach LM, Brehaut JC, Kohen DE. Children with neurodevelopmental disorders and disabilities: a population-based study of healthcare service utilization using administrative data. Dev Med Child Neurol. 2017;59(12):1284–90. [ DOI ] [ PubMed ] [ Google Scholar ] 6. Lamsal R, Dutton DJ, Zwicker JD. Using the ages and stages questionnaire in the general population as a measure for identifying children not at risk of a neurodevelopmental disorder. BMC Pediatr. 2018;18(1):122. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 7. Zwicker J, Zaresani A, Emery JCH. Describing heterogeneity of unmet needs among adults with a developmental disability: an examination of the 2012 Canadian survey on disability. Res Dev Disabil. 2017;65:1–11. [ DOI ] [ PubMed ] 8. Diallo FB, Fombonne É, Kisely S, Rochette L, Vasiliadis HM, Vanasse A, et al. Prevalence and correlates of autism spectrum disorders in Quebec. Can J Psychiatry. 2018;63(4):231–9. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 9. Davis NO, Kollins SH. Treatment for co-occurring attention deficit/hyperactivity disorder and autism spectrum disorder. Neurotherapeutics. 2012;9(3):518–30. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 10. Einfeld SL, Ellis LA, Emerson E. Comorbidity of intellectual disability and mental disorder in children and adolescents: a systematic review. J Intellect Dev Disabil. 2011;36(2):137–43. [ DOI ] [ PubMed ] [ Google Scholar ] 11. Lunsky Y, Balogh RS, Cobigo V, Isaacs B, Lin E, Ouellette-Kuntz HMJ. Primary care of adults with developmental disabilities in Ontario. Healthc Q. 2014;17(3):11–3. [ DOI ] [ PubMed ] [ Google Scholar ] 12. Lunsky Y, Balogh R, Durbin A, Selick A, Volpe T, Lin E. The mental health of adults with developmental disabilities in ontario: lessons from administrative health data. Healthc Q. 2018;21(1):6–9. [ DOI ] [ PubMed ] [ Google Scholar ] 13. Center on the Developing Child. at Harvard University. The Foundations of Lifelong Health. [Cited 2024 Oct 30] Available from: https://developingchild.harvard.edu/resources/the-foundations-of-lifelong-health-are-built-in-early-childhood/ 14. Roles and Responsibilities of Speech-Language Pathologists in Early Intervention. Technical Report. [Cited 2024 Oct 30]. Available from: https://www.asha.org/policy/tr2008-00290/?srsltid=AfmBOoqXTBdRpaTUsb7-JcjG_sxKVWSBY9WXXkmKFRctbqZ1Hui16cog 15. American Academy of Pediatrics, Joint Committee on Infant Hearing. Year 2007 position statement: principles and guidelines for early hearing detection and intervention programs. Pediatrics. 2007;120(4):898–921. [ DOI ] [ PubMed ] [ Google Scholar ] 16. Morgan C, Fetters L, Adde L, Badawi N, Bancale A, Boyd RN, et al. Early intervention for children aged 0 to 2 years with or at high risk of cerebral palsy: international clinical practice guideline based on systematic reviews. JAMA Pediatr. 2021;175(8):846–58. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 17. Hebbeler K, Spiker D, Bailey D, Scarborough A, Mallik S, Simeonsson R, et al. Early Intervention for Infants and Toddlers With Disabilities and Their Families: Participants, Services, and Outcomes [Internet]. 2007. Available from: https://www.sri.com/wp-content/uploads/2021/12/neils_finalreport_200702.pdf 18. Landa RJ, Holman KC, O’Neill AH, Stuart EA. Intervention targeting development of socially synchronous engagement in toddlers with autism spectrum disorder: a randomized controlled trial. J Child Psychol Psychiatry. 2011;52(1):13–21. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 19. Kohli-Lynch M, Tann CJ, Ellis ME. Early intervention for children at high risk of developmental disability in Low- and Middle-Income countries: A narrative review. IJERPH. 2019;16(22):4449. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 20. Autism. [Cited 2024 June 19]. Available from: https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders 21. Chafe R, Audas R. The unseen high-cost users: children and youth with mental illness. Healthc Pap. 2014;14(2):52–6. discussion 58–60. [ PubMed ] [ Google Scholar ] 22. Marshall J, Raffaele Mendez LM, Singleton DL. Barriers and facilitators to parental Help-Seeking for young children with developmental delays: A qualitative investigation. J Early Intervention. 2020;42(2):182–98. [ Google Scholar ] 23. Grilli L, Feldman DE, Swaine B, Gosselin J, Champagne F, Pineault R. Wait times for paediatric rehabilitation. Healthc Policy. 2007;2(3):e171–187. [ PMC free article ] [ PubMed ] [ Google Scholar ] 24. Majnemer A, Shevell MI, Rosenbaum P, Abrahamowicz M. Early rehabilitation service utilization patterns in young children with developmental delays. Child Care Health Dev. 2002;28(1):29–37. [ DOI ] [ PubMed ] [ Google Scholar ] 25. Chowdhury MZI, Chowdhury MA. Canadian health care system: who should pay for all medically beneficial treatments? A burning issue. Int J Health Serv. 2018;48(2):289–301. [ DOI ] [ PubMed ] [ Google Scholar ] 26. Shepherd CA, Waddell C. A qualitative study of autism policy in canada: seeking consensus on children’s services. J Autism Dev Disord. 2015;45(11):3550–64. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 27. Zwaigenbaum L, Duku E, Fombonne E, Szatmari P, Smith IM, Bryson SE, et al. Developmental functioning and symptom severity influence age of diagnosis in Canadian preschool children with autism. Paediatr Child Health. 2019;24(1):e57–65. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 28. Rivard M, Patrick C, Mello C, Morin D, Morin M. The diagnostic trajectory in autism and intellectual disability in quebec: pathways and parents’ perspective. BMC Pediatr. 2021;9:21. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 29. Genereaux D, Van Karnebeek CDM, Birch PH. Costs of caring for children with an intellectual developmental disorder. Disabil Health J. 2015;8(4):646–51. [ DOI ] [ PubMed ] [ Google Scholar ] 30. Doran CM, Einfeld SL, Madden RH, Otim M, Horstead SK, Ellis LA, et al. How much does intellectual disability really cost? First estimates for Australia. J Intellect Dev Disabil. 2012;37(1):42–9. [ DOI ] [ PubMed ] [ Google Scholar ] 31. Ou JJ, Shi LJ, Xun GL, Chen C, Wu RR, Luo XR, et al. Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban china: results from a descriptive study. BMC Psychiatry. 2015;15(1):3. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 32. Xiong N, Yang L, Yu Y, Hou J, Li J, Li Y, et al. Investigation of Raising burden of children with autism, physical disability and mental disability in China. Res Dev Disabil. 2011;32(1):306–11. [ DOI ] [ PubMed ] [ Google Scholar ] 33. Ogourtsova T, O’Donnell M, De Souza Silva W, Majnemer A. Health coaching for parents of children with developmental disabilities: a systematic review. Dev Med Child Neurol. 2019;61(11):1259–65. [ DOI ] [ PubMed ] [ Google Scholar ] 34. Majnemer A, O’Donnell M, Ogourtsova T, Kasaai B, Ballantyne M, Cohen E et al. BRIGHT Coaching: A Randomized Controlled Trial on the Effectiveness of a Developmental Coach System to Empower Families of Children With Emerging Developmental Delay. Front Pediatr. 2019;7. [Cited 2024 May 11]. Available from: https://www.frontiersin.org/articles/ 10.3389/fped.2019.00332 [ DOI ] [ PMC free article ] [ PubMed ] 35. Huffman MH. HEALTH COACHING: a fresh, new approach to improve quality outcomes and compliance for patients with chronic conditions. Home Healthc Nurse. 2009;27(8):490–6. quiz 496–8. [ DOI ] [ PubMed ] [ Google Scholar ] 36. CDC. Child Development. Developmental Disability Basics. 2024. [Cited 2024 June 19]. Available from: https://www.cdc.gov/child-development/about/developmental-disability-basics.html 37. Burger-Caplan R, Saulnier CA, Sparrow SS. Vineland Adaptive Behavior Scales. In: Kreutzer JS, DeLuca J, Caplan B, editors. Encyclopedia of Clinical Neuropsychology. Cham: Springer International Publishing; 2018:3597–601. [Cited 2024 Sept 17]. Available from: 10.1007/978-3-319-57111-9_1602 38. Ungar W, Tsiplova K, Millar N, Smith I. Development of the resource use questionnaire (RUQ–P) for families with preschool children with neurodevelopmental disorders: validation in children with autism spectrum Disorder. Clin Pract Pediatr Psychol. 2018;6:164–78. [ Google Scholar ] 39. Tsiplova K, Ungar WJ, Flanagan HE, den Otter J, Waddell C, Murray P, et al. Types of Services and Costs of Programs for Preschoolers with Autism Spectrum Disorder Across Sectors: A Comparison of Two Canadian Provinces. J Autism Dev Disord. 2019;49(6):2492–508. [ DOI ] [ PubMed ] [ Google Scholar ] 40. Ungar WJ, Tsiplova K, Millar N, Smith IM. Development of the Resource Use Questionnaire (RUQ–P) for Families With Preschool Children With Neurodevelopmental Disorders: Validation in Children With Autism Spectrum Disorder. Clin Pract Pediatr Psychol. 2018;6(2):164–78. [ Google Scholar ] 41. Ciminata G, Geue C, Langhorne P, Wu O. A two-part model to estimate inpatient, outpatient, prescribing and care home costs associated with atrial fibrillation in Scotland. BMJ Open. 2020;10(3):e028575. [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 42. Glick HA, Doshi JA, Sonnad SS, Polsky D, Glick HA, Doshi JA, et al. Economic Evaluation in Clinical Trials. Second Edition, Second Edition. Oxford, New York: Oxford University Press; 2014. p. 272 (Handbooks in Health Economic Evaluation). 43. Manning WG, Basu A, Mullahy J. Generalized modeling approaches to risk adjustment of skewed outcomes data. J Health Econ. 2005;24(3):465–88. [ DOI ] [ PubMed ] [ Google Scholar ] 44. Deb P, Norton EC. Modeling health care expenditures and use. Annu Rev Public Health. 2024;39(1):489–505. [ DOI ] [ PubMed ] [ Google Scholar ] 45. Russell MJ, Premji S, Mcdonald S, Zwicker JD, Tough S. Health care service for families with children at early risk of developmental delay: an All Our Families cohort study. [Cited 2024 Sept 18]. Available from: https://onlinelibrary.wiley.com/doi/ 10.1111/dmcn.14343 [ DOI ] [ PMC free article ] [ PubMed ] 46. Finlay B, Wittevrongel K, Materula D, Hébert ML, O’Grady K, Lach LM, et al. Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study. Res Dev Disabil. 2023;134:104420. [ DOI ] [ PubMed ] [ Google Scholar ] 47. Salvino C, Spencer C, Filipe AM, Lach LM. Mapping of Financial Support Programs for Children With Neurodisabilities Across Canada: Barriers and Discrepancies Within a Patchwork System. Journal of Disability Policy Studies. 2022. [Cited 2024 Oct 14]. Available from: https://journals.sagepub.com/doi/full/ 10.1177/10442073211066776 48. Finlay B, Dunn S, Zwicker JD. Navigating Government Disability Programs across Canada. Canadian Public Policy. 2020. [Cited 2024 Oct 14] Available from: https://www.utpjournals.press/doi/ 10.3138/cpp.2019-071 49. Grilli L, Feldman DE, Swaine B, Gosselin J, Champagne F, Pineault R. Wait times for paediatric rehabilitation. Healthc Policy. 2007;2(3):e171–87. [ PMC free article ] [ PubMed ] [ Google Scholar ] 50. McGill N, McLeod S, Crowe K, Wang C, Hopf SC. Waiting lists and prioritization of children for services: Speech-language pathologists’ perspectives. J Commun Disord. 2021;91:106099. [ DOI ] [ PubMed ] [ Google Scholar ] 51. Clark MLE, Vinen Z, Barbaro J, Dissanayake C. School age outcomes of children diagnosed early and later with autism spectrum disorder. J Autism Dev Disord. 2018;48(1):92–102. [ DOI ] [ PubMed ] [ Google Scholar ] 52. Sapiets SJ, Hastings RP, Stanford C, Totsika V. Families’ access to early intervention and supports for children with developmental disabilities. J Early Intervention. 2023;45(2):103–21. [ Google Scholar ] Associated Data This section collects any data citations, data availability statements, or supplementary materials included in this article. Supplementary Materials Supplementary Material 1. (38.7KB, docx) Supplementary Material 2. (32.6KB, docx) Data Availability Statement The data that support the findings of this study are available from Annette Majnemer ( [[email protected]](mailto: [email protected]) ) upon reasonable request. Articles from BMC Pediatrics are provided here courtesy of BMC ACTIONS View on publisher site PDF (1.3 MB) Cite Collections Permalink PERMALINK Copy RESOURCES Similar articles Cited by other articles Links to NCBI Databases Cite Copy Download .nbib .nbib Format: AMA APA MLA NLM Add to Collections Create a new collection Add to an existing collection Name your collection * Choose a collection Unable to load your collection due to an error Please try again Add Cancel Follow NCBI NCBI on X (formerly known as Twitter) NCBI on Facebook NCBI on LinkedIn NCBI on GitHub NCBI RSS feed Connect with NLM NLM on X (formerly known as Twitter) NLM on Facebook NLM on YouTube National Library of Medicine 8600 Rockville Pike Bethesda, MD 20894 Web Policies FOIA HHS Vulnerability Disclosure Help Accessibility Careers NLM NIH HHS USA.gov Back to Top