Mapping of Financial Support Programs for Children With Neurodisabilities Across Canada: Barriers and Discrepancies Within a Patchwork System

A cross-jurisdictional pan-Canadian environmental scan was conducted to identify provincial, territorial, and federal financial supports available to families with children living with neurodisabilities. In partnership with the organization Childhood Disability LINK, flowchart-styled pathway documents were developed for each financial support identified, mapping out the processes required to access each support. A critical analysis was completed as it relates to structural barriers, accessibility of program information and geographic discrepancies. The results revealed that, despite almost universal availability of programs to support families of children living with neurodisabilities, significant barriers and inequity remain. This included considerable variation in access to financial support based on geographic and jurisdictional discrepancies, absence of adequate and accurate information about programs, and minimal support provided to families in the application process. We argue that the barriers and discrepancies identified were an inherent result of the Canadian federalist fragmentation of the delivery of social care and financial support programs for children living with neurodisabilities. A more unified response by Canadian provincial, territorial, and federal governments is clearly needed to take positive steps to address the consequences of federalist fragmentation and respond to the structural barriers and geographic discrepancies identified by this study.

The Long-Term Impact of Childhood Disability on Mental Health Trajectories in Mid- to Late-Life

Objectives We draw from the life course and stress process frameworks to examine how experiencing disability in early life influences mental health in adulthood. Methods Data come from the Health and Retirement Study Cross-Wave Childhood Health and Family Aggregated Data file (2008-2018, n = 15,289). Childhood disability status is a retrospective self-report of whether respondents were disabled for six months or more because of a health problem before the age of 16 ( n = 581). We used age-based growth curve models to construct trajectories of depressive symptoms by childhood disability status. Results Respondents who experienced childhood disability exhibit more depressive symptoms at age 50 compared to those who did not experience this stressor. However, there is no difference in the growth of depressive symptoms with age between these groups, suggesting maintained inequality over the late adulthood life course. Discussion Findings suggest that childhood disability has long-term implications for life course mental health.

Physiotherapy management of children with cerebral palsy

Cerebral palsy (CP) is a non-progressive developmental movement and posture disorder that occurs during fetal or infant development. It results from an insult to the developing brain before birth, during delivery, or after birth. CP is regarded as the leading cause of childhood disability in all parts of the world. The hallmark of CP is a motor disability, thus, physiotherapy has long been central to the clinical management of children with this disorders. Physiotherapy intervention in the management of this condition focuses on function, movement, and optimizing the child’s potential. Some of the approaches used are neurodevelopmental technique, neuromuscular electrical stimulation, exercise therapy, hydrotherapy, body weight support tread mill training, sensory integration training, and constraints induced therapy. Although, physiotherapy is generally recommended by all members of the health-care team. However, the effectiveness of physiotherapy is inconsistent. The objective of this review was to summarize the proven effectiveness of the most commonly used physiotherapy intervention in the management of children with CP.

Measuring childhood disability and AIM programme provision in Ireland

The social inclusion of children with disabilities, and in particular their inclusion in early learning and care settings, is key to maximising their wellbeing, care and future education. It is therefore vital that children with disabilities have equal access to early learning and school age care and education. Joint research, published by the ESRI and Pobal explores a number of existing challenges experienced by children with disabilities in this area.

Dependency, Mortality, Invisibility: Linking Childhood Disability with Life Course Health Outcomes

People who experienced disability in childhood are living longer. It is not clear if longer lives indicate better health and less dependency, or if longer life is accompanied by increased dependency. We addressed that question by studying the joint dynamics of mortality and dependency. This population is “invisible” in most national surveys, which do not ask about childhood disability. We evaluated special education history as an indicator of childhood disability, and used that indicator to estimate dependency and life expectancy throughout adult life. Data: Panel Study of Income Dynamics and the Health and Retirement Study (n=20,563). Activities of daily living (ADLs), instrumental ADLs, and cognition defined five functioning levels including dependency and death. Multinomial logistic Markov models estimated probabilities for transitioning among the levels, with or without a history of childhood disability, adjusted for demographics. We used the probabilities in microsimulations, creating large populations of completed lives, identifying dependency at each age for each individual. Analysis showed special education history was a valid indicator of childhood disability; 13% had such history. With parent education less than high school, remaining life at age 20 was 46.0 years for people with that history, 58.3 for others; corresponding results with parent’s bachelor’s degree: 48.3 and 60.7 (p<0.05). Corresponding population percentages dependent 5+ years were: 15.2% and 3.8%, 13.1% and 3.8% (all p<0.05). Special education history can indicate childhood disability. People with that history had significantly more dependency than others, and shorter lives. Accommodations and interventions can improve their health and functioning.

The Long-Term Impact of Childhood Disability on Mental Health in Mid- to Late-Adulthood

For decades, life course and stress process scholars have documented that negative, stressful experiences in childhood have consequences for health across the life course. One aspect of the childhood adversity that deserves more research attention is childhood disability. Children with disabilities experience higher levels of psychological distress compared to their peers and having a disability can negatively impact traditional markers of the transition to adulthood (e.g., education, employment, family status). At present, there is limited evidence regarding the impact of childhood disability on mental health over multiple years of adulthood. This study applies random effects models to nationally representative data from five waves (2008-2016) of the Health and Retirement Study (n=15,380; n=590 with a childhood disability), to examine how experiencing disability before the age of 16 shapes depressive symptoms over multiple years of adulthood. Given known gender differences in mental health, the models are stratified by gender to examine how the association between childhood disability and adult mental health varies by gender. Preliminary results suggest that experiencing a childhood disability is associated with different patterns of depressive symptoms in adulthood. Men who experienced childhood disability report more depressive symptoms in adulthood, net of sociodemographic, adult health, and childhood disadvantage covariates. Women who experienced childhood disability report more depressive symptoms in adulthood, net of all covariates except for childhood depression. Next steps are to conduct age-based growth curve models using Stata’s mixed function to estimate whether childhood disability influences baseline and growth of depressive symptoms in adulthood.

Evaluation of the effectiveness of early intervention methods in newborns who have suffered hypoxic-ischemic CNS damage

Timely diagnosis of cerebral disorders both in the prenatal period and in the early neonatal period, as well as early rehabilitation treatment is the basis for the prevention of childhood disability. To this end, the so-called Early Intervention System is being introduced in Ukraine. The effectiveness of early intervention techniques directly depends on timely diagnosis and correctly chosen intervention tactics. Given the high neuroplasticity of the developing brain, it is advisable to start the elements of neurodevelopmental therapy from infancy. The aim of the work is to evaluate the effectiveness of methods of early intervention in children of the first 3 months of life who have suffered hypoxic-ischemic CNS damage in the neonatal period, by assessing the main indicators of psycho-motor development. 101 children who were treated in the neonatal pathology department due to hypoxic-ischemic CNS damage and did not have concomitant somatic pathology were examined. The children were in the ward for rehabilitation. To assess the effectiveness of comprehensive rehabilitation in young children, it is advisable to use adapted for Ukraine scale of Munich functional developmental diagnostics, which allows to assess the child's development in all major areas, its harmony and effectiveness of rehabilitation measures during the first 3 years of life. Statistical processing of the obtained results should be performed in the license package "Statistica 6.1 for Windows". Timely diagnosis of cerebral disorders both in the prenatal period and in the early neonatal period, as well as early rehabilitation treatment is the basis for the prevention of childhood disability. Given the high neuroplasticity of the developing brain, it is advisable to start the elements of neurodevelopmental therapy from infancy. The effectiveness of the methods recommended for use depends on timely diagnosis and correctly chosen intervention tactics. Assessment of the effectiveness of care for children at risk of deviant psychomotor development should be based on the application of the criteria and scales recommended by international expert groups, which are adapted in our country. Signs of full-fledged early intervention in the region are: perinatal diagnosis of congenital pathology, timely provision of medical and rehabilitation, social and special pedagogical services to children aged 0 to 3 years and their families. In order to achieve the set goals, in our opinion, the priority measures should be steps to implement the national protocol for care for children with perinatal CNS injuries, approval and implementation in Ukraine of the modern International Classification of Functioning, Life and Health Restrictions, providing medical care, rehabilitation and social services for young children.

Outcomes of Intervention in Children with Language Difficulties in Bangladesh

Background: Both clinical audits within hospitals, and population-based surveys of childhood disability in Bangladesh, have shown that large numbers of children have speech and language difficulties. This study determined the improvement of language skills of children presenting with difficulties to the Speech, Language and Communication (SLC) clinic of the Child Development Center (CDC) in Dhaka Shishu (Children) Hospital (DSH). Methodology: This is a retrospective study where records of children enrolled from April 2009 to March 2014, who had visited the SLC Clinic at least 3 times over a span of 6 months were analyzed. Preverbal language skills, comprehension, and expressive language levels were measured informally based upon play and interactive sessions and observation of function. Interventions involved training parents on informal intervention techniques following some international standard guidelines. Pre and post-intervention observations on preverbal, comprehensive, and expressive language skills were recorded to determine outcomes. Results: Of the 706 enrolled children 11.0%, 79.2%, 9.5%, .3% were 0-<2 years, 2-<5 years, >5-9 and 10-16 years old, respectively. 69.5% of children were males. Preverbal skills (attention span, awaiting, eye contact, attention sharing, turn-taking, copying), comprehension, and expressive language status showed significant improvement between the first and last visit (p= 0.000) Conclusions: Interactive play, music, books, etc. are important means of improving communication between parents and children. Professionals working with developmentally delayed children need to be trained to utilize these strategies, with the provision of appropriate facilities within clinical settings. A large majority of children can be assisted to overcome delays and optimize their potential.

Outcome of Preterm Labour in SSMC Mitford Hospital, Dhaka.

Introduction: : Preterm birth as a consequence of preterm labour is the major clinical problem associated with perinatal mortality, serious neonatal morbidity and moderate to severe childhood disability and two-thirds of all perinatal deaths. Moreover, preterm labour comprises a large number of low birth weight babies. Global incidence of preterm labour is 5-10% of all births. The aim of this study was to determine the clinical profile and to find out pregnancy outcomes of preterm labour. Materials & Methods: This cross-sectional study was conducted in Sir Salimullah Medical College Mitford Hospital, Dhaka from January 2005 to December 2005. A total 103 gravid women who got admitted with established premature labour pain were included as study patients. Preterm labour associated with severe pre-eclampsia, eclampsia, antepartum haemorrhage and intrauterine fetal death were excluded. Data were collected in a pre-designed questionnaire and analyzed by SPSS software. Results: Incidence of preterm labour was found 6.3%. Among maternal morbidities, puerperal sepsis found to be highest (14.56%) followed by UTI (7.77%), PPH (6.80%), wound infection (5.83%) and retained placenta (3.88%). This study found perinatal mortality 32.0% and morbidity 49.5% of which RDS contributed highest (24.27%) followed by neonatal jaundice (11.65%), septicemia (8.73%), neonatal convulsion (2.91%) and umbilical sepsis (1.94%). Conclusion: Preterm labor followed by preterm birth significantly contributes to maternal morbidity and perinatal morbidity and mortality. Medicine Today 2021 Vol.33(2): 143-146

Building a culture of engagement at a research centre for childhood disability

Background Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. Methods This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. Results Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the “softer” building blocks of CanChild’s culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family–researcher partnerships. Conclusion Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.