Service access for youth with neurodevelopmental disabilities transitioning to adulthood: service providers’ and decision-makers’ perspectives on barriers, facilitators and policy recommendations

Family-centred interventions for Indigenous early childhood well-being by primary healthcare services.

Background: In alignment with the United Nations Convention on the Rights of Persons with Disabilities commitments (1), government support and services are important in reducing barriers to social participation through access to services for children and youth with neurodevelopmental disabilities (NDD) and their families (2). Research has demonstrated that children with NDD and their families face several challenges in navigating the fragmented landscape of disability services and support in Canada (3). However, limited information exists on decision-maker and service-provider perspectives on improving service integration. Approach: To explore the perspectives of service providers and decision-makers about system barriers and facilitators to navigate services for children and youth with support needs (CYSN) and their families in British Columbia and identify solutions to address these. Using a qualitative descriptive methodology, inductive thematic data analysis was conducted in 6 semi-structured interviews with service providers and decision-makers from childhood disability services across ministries in British Columbia. Prospective interviewees were identified by performing an internet search on social media and consulting with our stakeholders' representatives (Research Advisory Council, Kids Brain Health Network). A semi-structured interview guide including relevant topics was developed by the research team and was reviewed, piloted and adjusted by the Project ACCESS Advisory Council to ensure a patient and family-orientated perspective. Inductive thematic analysis was conducted by the research team. Results: Eight themes were identified. These themes encompass aspects of the system navigation challenges, barriers, facilitators and policy recommendations to improve service integration for children and youth with support needs and their families. The system navigation challenges are related to variability in funding and program implementation and tension between the roles across and within sectors, which undermines the capability of the system to adapt to the needs of children and families. The system-level barriers are related to a fragmented and under-resourced system of services and support, whereas the family-child level includes barriers and facilitators related to their advocacy capacity and experiences of trust and collaboration with the system. Potential policy recommendations to improve the integration of care and facilitate navigation services and support are organized into three themes: integrate system values and a model of care, improve services and support implementation and build relationships and collaborations across the system. Implications: These results reveal critical recommendations for changes in disability policy and program implementation from the perspectives of decision-makers and service providers to improve the disability system integration and address the challenges in navigating disability services and support through more equitable childhood disability support policies and programs. These recommendations will be prioritized by representatives of families with children with NDD, services providers and decision-makers working in disability services and support, using a Nominal Group Technique methodology. Knowledge translation outputs will disseminate the prioritized recommendations as policy briefs and a policy forum. References. OHCHR [Internet]. [cited 2024 May 29]. Convention on the Rights of Persons with Disabilities. Available from: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities2. Dutton DJ, Forest PG, Kneebone RD, Zwicker JD. Effect of provincial spending on social services and health care on health outcomes in Canada: an observational longitudinal study. CMAJ [Internet]. 208 Jan 22 [cited 2024 May 29];90(3):E66-7. Available from: https://www.cmaj.ca/content/90/3/E663. Finlay B, Wittevrongel K, Materula D, Hbert ML, OGrady K, Lach LM, et al. Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study. Res Dev Disabil [Internet]. 2023 Mar [cited 2024 Apr 5];34:04420. Available from: https://www.sciencedirect.com/science/article/pii/S089422222002505

To explore the factors that influence the process of transitioning from child to adult services in Ireland among young people with cerebral palsy, their parents, and service providers. This study followed a qualitative descriptive approach. Semi-structured interviews were conducted with 54 participants, including young people with cerebral palsy aged 16 to 22 years (n = 13), their parents (n = 14), and service providers (n = 27). Data were analysed using the Framework Method. Findings were categorized using an ecological model across four levels: individual, microsystem, mesosystem, and exosystem. Limited awareness, preparation, and access to information hindered successful transition. Microsystem factors such as family knowledge, readiness, resilience, and health professional expertise influenced transition experience. Mesosystem factors encompassed provider-family interaction, interprofessional partnerships, and interagency collaboration between child and adult services. Exosystem factors included inadequate availability and distribution of adult services, limited referral options, coordination challenges, absence of transition policies, staffing issues, and funding allocation challenges. Transition is influenced by diverse factors at multiple ecological levels, including interactions within families, between health professionals, and larger systemic factors. Given the complexity of transition, a comprehensive multi-level response is required, taking into account the interactions among individuals, services, and systems.

Livestock diseases are a priority problem for livestock keepers throughout Ethiopia. Livestock keepers have also singled out poor animal health service delivery, which is largely the domain of the public sector, as the major constraint to improving animal health and productivity. In the current study, we describe the animal health service delivery system and compile from five questionnaire surveys involving 4,162 livestock keepers to characterize animal health service delivery in Ethiopia. The mapping of the animal health service delivery system along the livestock value chain clearly highlights the role of informal animal health services and variations of roles of the private sector. Also, the survey results clearly showed that livestock keepers' access to, use of and satisfaction with animal health services significantly varied across livestock production systems, geographic locations, socioeconomic strata, and service providers. Livestock keepers in crop-livestock and agropastoral systems had 5.5 (odds ratio = 5.453, P = 0.000) and 2.5 (odds ratio = 2.482, P = 0.000) times more access to services in reference to the pastoral system. In reference to private veterinary clinics, livestock keepers reported higher access to services provided by all the other service providers, particularly to services provided by extension agents, drug shops and CAHWs. Similarly, better access was reported by male than female (odds ratio = 1.098; P = 0.025) and wealthier than poorer (odds ratios = 1.40–1.79; P = 0.000) farmers and pastoralists. In general, low access to services was reported, 32.7, 25.2, and 19.3% of the respondents reporting access in crop-livestock, agropastoral and pastoral systems, respectively. Effective demand for services was evaluated through proxy variables, namely number of visits to service providers and health expenditures over a year. Highland farmers used the services more often than pastoralists (odds ratio = 2.86; P = 0.000), but pastoralists' expenses were significantly higher. Wealth (measured by livestock owned), gender and age also had significant effects on the use of services and expenditure on services. Satisfaction with services was evaluated based on four measures, namely availability (av), accessibility (ac), quality (qw), and timeliness (tm) of services. The average scores (out of 10) for av, ac, qw, and tm were 6.1, 5.9, 6.2, and 5.7, respectively. Principal component analysis was conducted to derive the latent variable “satisfaction” from the four measures, extracted only one factor, indicating the four variables are measuring the same construct (satisfaction). Regressing the latent variable satisfaction on the four measures gave significant (P = 0.000) b values of 0.22, 0.20, 0.13, and 0.14 for av, ac, qw, and tm, respectively, indicating strong relationships between the latent variable satisfaction and its measures. There was a significant dissatisfaction with the public sector, with average scores of 0.06 and 0.19 for the public and private service providers, respectively. It can be concluded that livestock keepers in remote regions of the country, pastoralists, women, poorer, and older livestock keepers have less access to services. Satisfaction with services is low to medium and the major concerns of livestock keepers appears to be availability and accessibility of services. Based on our findings, we recommend an integrated, multi-sectoral involvement to improve the veterinary service delivery through improved veterinary infrastructure, public-private partnership, and animal health information system across the various livestock production systems.

Literature is scarce regarding the mental health outcomes of caregivers of individuals with neurocognitive and neurodevelopmental disorders, particularly when comparing caregivers of both disorders, specifically in Pakistan. This study aims to fill this gap, provide implications and policy recommendations, and contribute to future research. The mental health outcomes are operationalized as depression, anxiety, and stress. A cross-sectional correlational design and purposive sampling were used to collect data from caregivers of children with neurodevelopmental disorders (under 18) and caregivers of individuals with neurocognitive disorders (at least 65 years old). The study included 210 participants: 100 caregivers of individuals with neurodevelopmental disorders and 110 caregivers with neurocognitive disorders, with a mean age of 37.78 and a standard deviation of 9.62. The Depression Anxiety Stress Scale (DASS-21) was used to measure depression, stress, and anxiety. Findings revealed a significant positive relationship between stress, anxiety, and depression. An independent samples t-test showed that caregivers of individuals with neurodevelopmental disorders scored significantly higher on depression, anxiety, and stress than caregivers of individuals with neurocognitive disorders. The study discussed these findings about relevant literature and provided implications and policy recommendations for the social welfare of caregivers of individuals with neurodevelopmental and neurocognitive disorders.

Issues in Medicaid Policy and System Transformation: Recommendations From the President's Commission

To improve public health and support at-risk individuals and families, service navigation has emerged as a primary prevention approach to promote service access. Guided by the Ecological Framework, this study explored workforce experiences and perceptions of barriers and facilitators to health and social care access using qualitative methods. Semi-structured interviews and focus groups were conducted with community health workers, family navigators, supervisors, and program administrators from diverse settings. They were transcribed and independently coded by the research team using thematic analysis methodology. Findings showed that barriers to navigation occurred at multiple ecological levels, including the client (e.g., transportation, stigma), navigator (e.g., cultural competence, language barriers), organization (e.g., workforce shortages, referral challenges), community (e.g., transportation), and systemic (e.g., discrimination and bias) levels. Facilitators also occurred at multiple levels, including at the navigator (e.g., rapport building, coordinated referrals), organization (e.g., inter-agency collaboration, culturally holistic services), and systemic (e.g., anti-discrimination policies) levels. Frontline navigators adopt multilevel strategies to improve service access. However, organizational and systemic barriers impede equitable care access. Policy reforms, including strategic workforce development, improved technology, interorganizational collaborations, and sustainable funding are needed.

The current study aims to explore parents and service providers’ attitudes towards the social inclusion of people with neurodevelopmental disabilities into society, through exercising their rights in various financial transactions and personal status matters in the State of Qatar. Additionally, the study aims to explore any differences in the participants’ attitudes towards social inclusion based on their role, gender and the child’s disability type. Eighty-two service providers (46 Female) and sixty-five parents (40 Female) of children with Intellectual Disability or Autism Spectrum Disorder participated in this study. They completed the Attitudes towards social inclusion of people with disabilities (ASIPD) Scale. Findings showed that the participants believe that the Shari’ah (Islamic law) places a high premium on the social inclusion of the people with neurodevelopmental disabilities and predates various modern theories on the subject. In addition, the Islamic law permits the persons with mild neurodevelopmental disabilities to engage in many contracts in the realms of financial transactions and personal status. Parents and service providers have neutral to positive attitudes towards social inclusion of people with neurodevelopmental disabilities in terms of performing some financial transactions and some personal status rights like marriage and divorce according to severity of disability. Results were discussed and further recommendations were provided.

Patient navigation (PN) represents a branch of service delivery traditionally aimed at coordinating disjointed care services for patients with particular health conditions (e.g., cancer, HIV, diabetes). Over time, this approach has been extended to various social and health contexts, including most recently to children with neurodisability and their families. In this context, PN involves the provision of information, advice, education, and emotional support, coordination of services both within and across sectors, and the work is guided by person- and family-centred principles of practice. This manuscript documents the proceedings of the BC Summit on Navigation for Children and Youth with Neurodevelopmental Differences, Disabilities, and Special Needs, which took place on January 18 and 19, 2021 and was developed in collaboration with a Provincial Advisory Group. Our Summit brought together over 120 individuals, including researchers, government personnel, service providers, educators, healthcare workers, and family advocates. As part of the event, attendees learned from families with lived experience navigating the British Columbian (BC) service system, from BC Children’s Hospital Research Institute investigators, and from exemplar providers who deliver navigation services in various contexts (e.g., locally, regionally, and provincially). Attendees also participated in various engagement opportunities, and collaboratively identified directions for developing a future community of navigation and related services in BC.

Objective:With the onset of the COVID-19 pandemic, many families face barriers in accessing critical services for their children. However, there is a disproportionate impact on families of children with Neurodevelopmental Disorders (NDDs), particularly those who are dependant on receiving regular services. The current study investigated how service delivery has changed for children and families with NDDs during the COVID-19 pandemic, to identify which groups are most at risk for service disruption and negative outcomes, and to provide actionable recommendations for community agencies that provide early interventions for future pandemics.Participants and Methods:Data was collected in the fall and winter of 2020/2021 during the Covid-19 pandemic. Families were recruited from a local service provider in British Columbia whose Early Years Support services delivery model was changed to online delivery during the pandemic. Children had a diagnosis of NDD or were on the waitlist for an assessment. Overall, 26 families participated in a semi-structured interview that asked about their experiences of receiving services for their children during the pandemic. Of these families, 20 subsequently completed online questionnaires that asked about their parenting stress levels and their children’s behaviour throughout the pandemic. Families of a range of compositions were drawn from different ethnicities (30% white, 25% South Asian, 20% Filipino, and the remaining 5% identified as Indigenous, African or East Asian). The mean age of children was 3.80 years (SD =0.72).Results:From the survey, we found that 58% of parents reported higher than average levels of mental health and behavioural challenges in their children during the Covid-19 pandemic. In addition, 45% of parents reported higher than average parenting stress levels. Qualitative interview data indicated that most parents reported positive experiences with receiving services during the Covid-19 pandemic and reported feeling supported even with social distancing measures. However, families also reported increased stress levels and isolation, particularly those who have children with Autism Spectrum Disorder, who rely on early funding (06 years) and early services. One of the themes that emerged from parents who were on the waitlist to receive an assessment was that wait times around assessments were very long, which contributed to parent stress levels. Parents also reported concerns around wait times to access services and difficulty of accessing online services due to internet and connection issues.Conclusions:The current study identified central themes of stressors and barriers experienced by families and children with NDDs in service delivery. Overall, parents reported satisfaction in changes in service delivery in most ways; however, they also reported stresses and barriers that included wait times, increased isolation, and accessing online services. Actionable steps to reduce family stress include better communication between service providers and families for wait times, and more variability in appointment times. Specific recommendations for current and future pandemics will be expanded on in the poster.

Little is known about the prevalence of neurodevelopmental, mental, or behavioral disorders among CSEC survivors, and the experiences of CSEC survivors with these disorders with health care. We conducted a self-report survey study with N = 269 youths between the ages of 13 and 24 years old who disclosed that they had experienced CSEC prior to age 18 in the United States. The vast majority, 82%, reported that they had ever been diagnosed with a neurodevelopmental disorder or neurological impairment (i.e. ADHD, autism, intellectual disability, or learning disorder), a serious mental illness (i.e. schizophrenia, schizoaffective disorder, or bipolar disorder), a mood disorder (i.e. PTSD, depression, or anxiety), or a behavioral disorder (substance use, eating, or conduct disorder). Approximately 26% reported seeking healthcare while being exploited. Those with Serious mental illness (SMI) or behavioral disorder were more likely than other subsets of CSEC survivors to report poor mental and physical health, and negative experiences in the healthcare setting. Our findings have direct implications for efforts that align with the UN's Sustainable Development Goal of “promoting just, peaceful and inclusive societies,” in that they provide support for the idea that health care providers will benefit from training in supporting human trafficking survivors with neurodevelopmental, mental, and behavioral disorders.

SummaryBackgroundPoor attendance at school, whether due to absenteeism or exclusion, leads to multiple social, educational, and lifelong socioeconomic disadvantages. We aimed to measure the association between a broad range of diagnosed neurodevelopmental and mental disorders and recorded self-harm by the age of 24 years and school attendance and exclusion.MethodsIn this nationwide, retrospective, electronic cohort study, we drew a cohort from the Welsh Demographic Service Dataset, which included individuals aged 7–16 years (16 years being the school leaving age in the UK) enrolled in state-funded schools in Wales in the academic years 2012/13–2015/16 (between Sept 1, 2012, and Aug 31, 2016). Using the Adolescent Mental Health Data Platform, we linked attendance and exclusion data to national demographic and primary and secondary health-care datasets. We identified all pupils with a recorded diagnosis of neurodevelopmental disorders (ADHD and autism spectrum disorder [ASD]), learning difficulties, conduct disorder, depression, anxiety, eating disorders, alcohol or drugs misuse, bipolar disorder, schizophrenia, other psychotic disorders, or recorded self-harm (our explanatory variables) before the age of 24 years. Outcomes were school absence and exclusion. Generalised estimating equations with exchangeable correlation structures using binomial distribution with the logit link function were used to calculate odds ratios (OR) for absenteeism and exclusion, adjusting for sex, age, and deprivation.FindingsSchool attendance, school exclusion, and health-care data were available for 414 637 pupils (201 789 [48·7%] girls and 212 848 [51·3%] boys; mean age 10·5 years [SD 3·8] on Sept 1, 2012; ethnicity data were not available). Individuals with a record of a neurodevelopmental disorder, mental disorder, or self-harm were more likely to be absent or excluded in any school year than were those without a record. Unadjusted ORs for absences ranged from 2·1 (95% CI 2·0–2·2) for those with neurodevelopmental disorders to 6·6 (4·9–8·3) for those with bipolar disorder. Adjusted ORs (aORs) for absences ranged from 2·0 (1·9–2·1) for those with neurodevelopmental disorders to 5·5 (4·2–7·2) for those with bipolar disorder. Unadjusted ORs for exclusion ranged from 1·7 (1·3–2·2) for those with eating disorders to 22·7 (20·8–24·7) for those with a record of drugs misuse. aORs for exclusion ranged from 1·8 (1·5–2·0) for those with learning difficulties to 11·0 (10·0–12·1) for those with a record of drugs misuse.InterpretationChildren and young people up to the age of 24 years with a record of a neurodevelopmental or mental disorder or self-harm before the age of 24 years were more likely to miss school than those without a record. Exclusion or persistent absence are potential indicators of current or future poor mental health that are routinely collected and could be used to target assessment and early intervention. Integrated school-based and health-care strategies to support young peoples' engagement with school life are required.FundingThe Medical Research Council, MQ Mental Health Research, and the Economic and Social Research Council.TranslationFor the Welsh translation of the abstract see Supplementary Materials section.

This thesis explores how assistive technology (AT) and choice are interpreted in contemporary disability rights, and how these rights are implemented in Australian policy. AT comprises products and services that are used to improve the ease and effectiveness of performance in a range of tasks and roles. People with disability use AT to enable participation in society by mediating the effects of impairment and environmental barriers. Effective use of AT facilitates inclusion, but access to and outcomes from AT have often been inequitable or inconsistent due to fragmented systems and limited involvement of AT users in decision-making. This thesis explores how the concepts of disability, AT and choice are understood by people who develop and implement policy, and by affected citizens including service providers and consumers. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) protects and promotes the civil, cultural, economic and social rights of people with disability. This thesis investigates Australia’s policy reforms since ratifying the CRPD in 2008 through an interpretive policy analysis of AT provision, focusing on the National Disability Strategy (NDS) and National Disability Insurance Scheme (NDIS). It argues that the meanings ascribed shape the ways in which disability rights are progressively implemented in policy and how choice is constructed in AT provision. The research aims to capture progress at a single point in time to influence future debate and further policy development. The interpretive policy analysis was approached systematically, incorporating multiple data sources and qualitative analysis methods. This involved identifying artefacts (data sources) and individuals and communities relevant to AT provision and Australia’s policy reforms in disability services. Key documents produced since Australia ratified the CRPD were investigated through the process of category analysis, to reveal interpretations of disability, AT and choice from the perspectives of policymakers (government), implementers (government agencies) and affected citizens (service providers and consumers). To ensure that under-represented groups’ interpretations were heard, five individuals from the affected citizens’ community were interviewed about their experiences of AT provision and choice in different contexts. The participants’ accounts were explored in detail using Interpretive Phenomenological Analysis (IPA) to identify patterns in the emergent themes. The findings in this thesis suggest that many people in Australia are still operating in an old paradigm that conflates disability with impairment, and considers disability a health issue. Policy implementers have interpreted assistive technology as products only, and choice as a means to improve efficiency, relying on technological innovation and market mechanisms as solutions instead of addressing the issues of access to AT and quality of services as identified by affected citizens. The ambiguity of choice as a policy principle means that it aligns with both liberal ideals that adopt market competition in public services and the human rights agenda, though these adopt different mechanisms and appear to deliver different outcomes. This thesis concludes by considering alternative conceptualisations and approaches for policy development and the cultural change required to realise disability rights and improve AT provision. Australia’s policies can evolve to support AT provision practices that facilitate the ongoing self-management of AT users by prioritising collaborative relationships. Re-framing choice as both a means and an end is consistent with a capabilities approach that aims to boost people’s opportunities in life through individual and collective resources. Understanding that AT is a process as well as products, and that AT provision is often a pre-requisite for participation, may reorient policies toward building and sustaining social capital rather than stimulating market competition. Considering impairment as another dimension of diversity instead of a specialist health issue may enable mainstreaming in policy through a universal design (UD) approach. This thesis contributes to the theoretical and practical challenge of realising the CRPD’s vision for an inclusive society. It argues that this requires an understanding of the universality of impairment and a culture that embraces diversity and understands the role and value of AT.

IntroductionMinority-language speakers in the general population face barriers to accessing healthcare services. This scoping review aims to examine the barriers to healthcare access for minority-language speakers who have a neurodevelopmental disorder. Our goal is to inform healthcare practitioners and policy makers thus improving healthcare services for this population.Inclusion criteriaInformation was collected from studies whose participants include individuals with a neurodevelopmental disorder (NDD) who are minority-language speakers, their family members, and healthcare professionals who work with them. We examined access to healthcare services across both medical and para-medical services.MethodSearches were completed using several databases. We included all types of experimental, quasi-experimental, observational and descriptive studies, as well as studies using qualitative methodologies. Evidence selection and data extraction was completed by two independent reviewers and compared. Data extraction focused on the barriers to accessing and to utilizing healthcare for minority-language speakers with NDDs. The search process and ensuing results were fully reported using a diagram from the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping review.ResultsFollowing the database search, a total of 28 articles met our final selection criteria and two articles were hand-picked based on our knowledge of the literature, for a total of 30 articles. These studies revealed that minority-language speakers with NDDs and their families experience several barriers to accessing and utilizing healthcare services. These barriers, identified at the Systems, Provider and Family Experience levels, have important consequences on children's outcomes and families' well-being.DiscussionWhile our review outlined several barriers to access and utilization of healthcare services for minority-language speakers with NDDs and their families, our findings give rise to concrete solutions. These solutions have the potential to mitigate the identified barriers, including development and implementation of policies and guidelines that support minority-language speakers, practitioner training, availability of referral pathways to appropriate services, access to tools and other resources such as interpretation services, and partnership with caregivers. Further research needs to shift from describing barriers to examining the efficacy of the proposed solutions in mitigating and eliminating identified barriers, and ensuring equity in healthcare for minority-language speakers with NDDs.

This scoping review aims to explore the citizenship of people with intellectual disabilities and its expression in inclusive research. The deductive lens used is the general principles embedded in Article 3 of the UN's Convention on the Rights of Persons with Disabilities. The review was conducted using the framework proposed by Arksey and O’Malley. Seven databases were searched for peer-reviewed journal articles dating from 2005 to 2019. Our key findings are: the term citizenship is seldom mentioned or explicitly discussed in the articles; the articles highlight a broad range of dimensions closely related to the exercise of citizenship. Citizenship in the articles is connected to participation, autonomy, decision-making, self-direction and inclusion in society. Articles also uncover violations of the rights and barriers to participation in the society; more attention needs to be paid to conceptualization and exploration of the citizenship of people with intellectual disabilities. Implications for further researchThe citizenship of people with intellectual disabilities needs to get more attention regarding both the understanding of the concept of citizenship and its exercise, so that people with intellectual disabilities get a real chance to become equal partners in society and research.