Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities.

Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are oftentimes 'child-centric', wherein family members are seen only as partners in therapy or care delivery, while their own needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of service infrastructure oriented towards parent-specific needs in existing service delivery models. This concept paper highlights the known challenges associated with parenting a child with a DD and discusses the intersectionality of factors impacting parental health and well-being, with a goal of promoting more equitable, holistic, and inclusive healthcare for all family members of children with DDs.

The Importance of Integrated Care for Individuals With Intellectual and Developmental Disabilities.

People with intellectual and developmental disabilities (IDDs) commonly have complex healthcare challenges. An IDD is a condition that is a result of an abnormality beginning during a person's neurodevelopment, often occurring in utero but also possibly occurring up to age 18. Any injury or maldevelopment of the nervous system can often result in lifelong health complications in this population, including those involving intellect, language, motor skills, vision, hearing, swallowing, behavior, autism, seizures, digestion, and many other areas. Individuals with IDDs often have multiple health complications, and their care is usually provided by a number of different healthcare providers, including a primary care provider, various healthcare specialists who focus on their particular areas of concern, an oral health provider, and a behavioral specialist(s), if needed. The American Academy of Developmental Medicine and Dentistry appreciates that integrated care is essential to providing care to those with IDDs. The name of the organization itself includes both medical and dental aspects, and the organization's guiding principles include the concepts of integrated care, person-centered and family-centered approaches, and a deep appreciation for the importance of values and inclusion in a community. Continuing to provide education and training to healthcare practitioners is a key to improving health outcomes for individuals with IDDs. Additionally, focusing on the importance of integrated care will ultimately lead to a reduction in health disparities and improve access to quality healthcare services.

Home-based music therapy for children with developmental disorders during the COVID-19 pandemic.

INTRODUCTION: During the COVID-19 pandemic, children with neurodevelopmental disabilities could not attend their usual rehabilitation therapies, with a consequent reduced support of developmental process and risk of worsening of their clinical conditions. METHODS: We prospectively enrolled 14 children with developmental delay, who had already tried a personalised music therapy (Euterpe method). We included them in a 12-day programme of home-based music therapy. The children and their parents were investigated using the Sleep Disturbance Scale for Children and the Parent Stress Index-Short Form. RESULTS: Fourteen children started the intervention, while only 12 children completed all the planned home sessions and assessments. We observed a significant improvement in children's sleep quality and a reduction of parental distress. DISCUSSION: The significant improvements in parental distress and sleep quality must be considered important achievements for the quality of life of a child and their family. Home-based music therapy can provide a feasible approach to improving sleep and parent's stress for children with developmental disorders.

Cross-sectional Comparison of Disparities by Race Using White vs Hispanic as Reference Among Children and Youths With Developmental Disabilities Referred for Speech Therapy.

Importance: Health care research on racial disparities among children and youths has historically used the White race as a reference category with which other racial and ethnic groups are compared, which may inadvertently set up Whiteness as a standard for health. Objective: To compare 2 interpretations of an analysis of racial disparities in speech therapy receipt among children and youths with developmental disabilities: a traditional, White-referenced analysis and a Hispanic majority-referenced analysis. Design, Setting, and Participants: This cross-sectional study used multiple logistic regression to analyze speech therapy referrals for children, adolescents, and transition age youths in an integrated health care system in Southern California from 2017 to 2020. Eligible participants were children and youths up to age 26 years with 1 or more diagnosed intellectual or developmental disability (eg, autism spectrum disorder, speech or language delay, developmental delay, Down syndrome, and others). Exposures: Child or youth race and ethnicity as reported by parents or caregivers (Asian, Black and African American, Hispanic and Latinx, American Indian or Alaskan Native, Native Hawaiian or Pacific Islander, White, multiple, and other). Main Outcomes and Measures: Receipt of speech therapy within 1 year of referral. Results: A total 66 402 referrals were included; 65 833 referrals (99.1%) were for children under age 17 years, 47 323 (71.3%) were for boys, and 39 959 (60.2%) were commercially insured. A majority of participants were identified as Hispanic (36 705 [55.3%]); 6167 (9.3%) were identified as Asian, 4810 (7.2%) as Black, and 14 951 (22.5%) as White. In the traditional racial disparities model where the reference category was White, referrals of children and youths who identified as Hispanic, Black, Pacific Islander, and other had lower odds of actual receipt of speech therapy compared with referrals for White children and youths (Hispanic: OR, 0.79; 95% CI, 0.75-0.83; Black: OR, 0.72; 95% CI, 0.66-0.78; Pacific Islander: OR, 0.74; 95% CI, 0.57-0.98). When using the majority race group (Hispanic) as the reference category, referrals for children and youths who identified as White (OR, 1.26; 95% CI, 1.20-1.30), Asian (OR, 1.21; 95% CI, 1.12-1.30), and multiracial (OR, 1.35; 95% CI, 1.08-1.71) had higher odds of resulting in actual service receipt in comparison with referrals for Hispanic children and youths. Conclusions and Relevance: The cross-sectional study demonstrates the value of decentering Whiteness in interpreting racial disparities research and considering racial differences against multiple referents. Racial disparities researchers should consider investigating multiple between-group differences instead of exclusively using White as the default reference category.

The Effect of Mindfulness-Based and Acceptance Commitment Therapy-Based Interventions to Improve the Mental Well-Being Among Parents of Children with Developmental Disabilities: A Systematic Review and Meta-Analysis.

Parents of children with developmental disabilities are susceptible to mental health problems. Mindfulness-based and acceptance and commitment therapy (ACT)-based interventions can improve their mental well-being. This review examined the effectiveness of mindfulness-based and ACT-based interventions in improving mental well-being and mindfulness among parents of children with developmental disabilities. Six electronic databases were searched, resulting in the inclusion of ten studies published between 2014 and 2020. Meta-analysis was conducted using the random-effect model. The results suggest that mindfulness-based and ACT-based interventions were effective in decreasing parental stress, anxiety and depression, however, the effectiveness of these interventions in increasing parental mindfulness was inconclusive. Based on these findings, we discussed considerations for implementing interventions and identified areas which warrant further research.

The impact of an autonomy-supportive yoga intervention on self-determination in adults with intellectual and developmental disabilities.

The aim of this study was to examine the impact of an autonomy-supportive yoga intervention on the self-determination of adults with intellectual and developmental disabilities. Research supports the use of autonomy-supportive interventions to increase positive health outcomes with this population. The present study utilized a qualitative approach with eight subjects participating in semi-structured qualitative interviews. Content analysis identified support for three themes related to the impact of yoga: autonomy, relatedness, competence. The results suggested that the yoga intervention may support self-determination for adults with IDD, as the participants' responses demonstrated increased feelings of autonomy, competence, and relatedness. The results also indicated that an autonomy-supportive yoga intervention can be achieved with adults with intellectual and developmental disabilities by targeting the key constructs of autonomy, relatedness, and competence.

Randomised Controlled Trial of a Therapeutic Playgroup for Children with Developmental Delays.

A single-blind randomised control trial investigated the effectiveness of the Learn, Engage and Play (LEaP) playgroup. Seventy-one children with developmental delay were randomly allocated to an 8-week LEaP playgroup or control group and followed up at 12 and 28 weeks. On the primary outcome measure, LEaP demonstrated significant within group changes at 28 weeks (parenting distress p = 0.018) but no between group changes. On secondary outcome measures, at 12 weeks LEaP produced significantly better outcomes than control in goal achievement (performance p = 0.022; function p = 0.008) and family-support (p = 0.024), with LEaP continuing to demonstrate significantly better goal achievement (child performance p = 0.042; function p = 0.012) at 28 weeks. Findings indicate LEaP may assist in improving family-support and goal achievement outcomes for children with developmental delays.

Adaptive innovations to provide services to children with developmental disabilities during the COVID-19 pandemic.

Children with developmental disabilities are experiencing significant challenges to service access due to suspension of in-person assessments during the current COVID-19 pandemic. Telehealth is rapidly becoming the new service delivery model, which presents a unique opportunity for innovation in care that could be beneficial in the post-pandemic period. For example, using a combination of in-home video and telehealth options could form the first step in developmental assessment, allowing children to receive the necessary supports without delay. Recent telehealth funding is welcome but additional Medicare items for joint consultations including general practitioners (GPs), and paediatric, mental health and allied health professionals is critical.

Academy of Nutrition and Dietetics: Revised 2020 Standards of Practice and Standards of Professional Performance for Registered Dietitian Nutritionists (Competent, Proficient, and Expert) in Intellectual and Developmental Disabilities.

Intellectual and developmental disabilities (IDD) encompass both intellectual disabilities (ID) and developmental disabilities (DD). In 2016, 7.37 million people in the United States and 200 million worldwide were identified with an ID or DD. Approximately 1 in 6 (17.8%) children have been identified with a DD in the United States, which is up from 16.2% in 2009-2011. Globally, 52.9 million children from birth to 5 years of age have been identified with a DD. Registered dietitian nutritionists (RDNs) have an important role in the treatment of this population, as optimizing nutrition status improves cognition and quality of life. The Behavioral Health Nutrition Dietetic Practice Group, with guidance from the Academy of Nutrition and Dietetics Quality Management Committee, has revised the Standards of Practice (SOP) and Standards of Professional Performance (SOPP) for RDNs in Intellectual and Developmental Disabilities for 3 levels of practice-competent, proficient, and expert. The SOP uses the Nutrition Care Process and clinical workflow elements for care of individuals with an ID or DD. The SOPP describes 6 domains that focus on professionalism. Indicators outlined in the SOP and SOPP depict how these standards apply to practice. The SOP and SOPP are complementary resources for RDNs caring for individuals with an ID or DD. The SOP and SOPP are intended to be used by RDNs for self-evaluation to assure competent practice and for determining potential education and training needs for advancement to a higher practice level in a variety of settings.

Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study.

BACKGROUND: The aim of this study was to explore expert professionals' opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. METHODS: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years' (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests. RESULTS: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments. CONCLUSIONS: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.

Effectiveness of a home-based early cognitive-motor intervention provided in daycare, home care, and foster care settings: Changes in motor development and context affordances.

BACKGROUND: Appropriate opportunities within the context are crucial to affect the motor trajectory positively. OBJECTIVE: To investigate the effectiveness of professional-parental/caregivers' early motor-cognitive intervention on infants' motor development in Daycare (DC), Home Care (HC), and Foster Care (FC). Secondary objectives were to examine if parents and caregivers modified the context to meet the infants' needs and if making modifications was positively associated with infants' development. METHODS: Participants were 176 infants (DC = 48; HC = 58, FC = 70). Infants' were randomly assigned to intervention (IG) or comparison (CG) groups within each context. The Alberta Infant Motor Scale and Affordances in the Daycare and Home Environment for Motor Development were used. A cognitive-motor intervention was provided for infants in the intervention groups; and, a home-based support protocol for all caregivers and parents. RESULTS: IGs showed higher motor scores at post-test than CGs (p values from 0.018 to 0.026) and positive changes were observed from the pre-to-post intervention for all IGs (p ≤ .0001), and for two CGs (DC p ≤ .0001; HC p = .028). Maternal daily care and home opportunities improved for all infants. CONCLUSIONS: Parents/caregivers' protocol combined with the cognitive-motor intervention lead to better motor outcomes and changes in the context for the IGs. Only the parent/caregivers' protocol was not strong to improve CGs motor outcomes, although changes in context were found. Intensive intervention is need for infants living in vulnerability.

Complementary and Alternative Medicine Use in Children with a Developmental Disability and Co-occurring Medical Conditions.

OBJECTIVE: The primary aim of this study was to evaluate differences in the prevalence of complementary and alternative medicine (CAM) usage among children with and without developmental disabilities (DD). Secondarily, the association between CAM usage and comorbid chronic medical conditions was explored among children with DD. DESIGN: Data come from the 2012 Child Complementary and Alternative Medicine Supplement of the National Health Interview Survey, a nationally representative sample of children in the United States between the ages of 4 and 17 (n = 10,218).Main outcome measures Multiple logistical regression models provided insight into the relationships between parent-report CAM usage, DD, and chronic medical conditions. RESULTS: Children with developmental disabilities were more likely to use CAMs compared to their typically developing peers (21% vs 16%). Children with DDs and comorbid chronic medical conditions used CAMs at even higher rates (23% vs 18%). CONCLUSIONS: Results indicated that children with DD, especially those with a co-occurring chronic medical condition, use CAMs more often that typically developing children. Given scarcity of information on safety and effectiveness, clinical providers need to be alert to which children may be more likely to be exposed to CAMs. Communication between parents and providers needs to include discussion of CAM treatments.

Use of complementary and alternative medicine treatments by mothers of children with developmental disabilities: a cross sectional study.

This study aims to determine the rates of complementary and alternative medicine methods used by mothers of children with developmental disabilities, reasons for using methods, and comparison of methods according to diagnosis groups. The cohort in this cross-sectional and correlational study consisted of the mothers of 390 students with developmental disabilities; 77.2% of the mothers reported using at least one complementary and alternative medicine treatment. The highest level of use was found in the groups of mothers of children with cerebral palsy (100%) and autism spectrum disorder (88.5%). The most commonly used treatments were biological therapies consisting of special diets and multivitamins, manipulative and body-based methods including massage and exercise, and mind-body interventions such as prayer, wearing amulets, and seeking help from a Muslim preacher (hodja). However, mothers never used alternative medicine treatments such as homeopathy, acupuncture, or Ayurveda, nor did they use energy-based healing techniques such as reiki, tai chi, yoga, kinesiology, or neurofeedback exercises. Health care professionals, especially nurses as health care team members, should be knowledgeable and careful about the benefits, side effects, administration methods, and contraindications of complementary and alternative medicine treatments.

Serious Game-based Intervention for Children with Developmental Disabilities.

BACKGROUND: Children with developmental disabilities may need support with motor skills such as balance improvement, cognitive skills such as vocabulary learning, or social skills such as adequate interpretation of emotional expressions. Digital interactive games could support the standard treatments. We aimed to review clinical studies which investigated the application of serious games in children with developmental disabilities. METHODS: We searched MEDLINE and Scopus on 05 May 2019 limited to the English language. We included people between two and 24 years of age who were affected by neurodevelopmental disorders and who received digital serious game-based medical interventions such as any computer- based or video-based games. We considered any study design reporting primary data. We used title, abstract, and full-text of journal articles to build diagnostic groups, and we described some selected specific game applications. RESULTS: The majority of the 145 relevant studies reported on autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), developmental coordination disorder (DCD), and disabilities affecting intellectual abilities (DAIA). 30 of the 145 studies reported a randomized design. We detailed six specific applications aimed at improving abilities in children with ASD, ADHD, cerebral palsy, and Down syndrome. We visualized the diagnostic groups by bibliographic mapping, and limited the text to the title and abstract of journal articles. CONCLUSION: We identified promising results regarding anxiety reduction, stress regulation, emotion recognition, and rehabilitation. Currently, there appears to be a lack of clinical evidence that children with neurodevelopmental disorders can benefit from the application of serious games.

Mindfulness-based programs and practices for people with intellectual and developmental disability.

PURPOSE OF REVIEW: People with intellectual and developmental disability (IDD) commonly exhibit behaviors that present challenges to their parents, caregivers, and teachers. Mindfulness-based practices and programs have emerged as a viable alternative to current interventions for such behaviors and the stress faced by their caregivers. This review addresses publications between 2018 and 2019 that examined the effectiveness of mindfulness-based practices and programs for people living with IDD. RECENT FINDINGS: Individuals with IDD can learn mindfulness practices to self-manage their aggressive and destructive behaviors. Individual practices and group-based programs continue to show that mindfulness approaches are effective for this population. Randomized controlled trials indicate that comprehensive mindfulness-based programs (e.g., mindfulness-based stress reduction, MYmind, and mindfulness-based positive behavior support) are effective for enhancing the quality of life of people living with IDD. SUMMARY: Research supports the use of informal mindfulness practices for challenging behaviors of people with IDD. Formal mindfulness-based programs continue to be evaluated for their effectiveness across different populations, cultures, levels of IDD, components of the program, and length of training. The research literature on mindfulness is still in the early stages of development and much work remains.

Impact of macronutrient supplements for children born preterm or small for gestational age on developmental and metabolic outcomes: A systematic review and meta-analysis.

BACKGROUND: Nutritional supplements may improve development of infants born small (preterm or small for gestational age [SGA]) but may increase the risk of later metabolic disease. We conducted a systematic review and meta-analysis to assess the effects of macronutrient supplements for infants born small on later development and metabolism. METHODS AND FINDINGS: We searched OvidMedline, Embase, Cochrane CENTRAL, and Cochrane Database of Systematic Reviews from inception to April 1, 2019, and controlled-trials.com, clinicaltrials.gov, and anzctr.org.au. Randomised or quasirandomised trials were included if the intention was to increase macronutrient intake to improve growth or development of infants born small and assessed post-discharge outcomes. Co-primary outcomes were cognitive impairment and metabolic risk, evaluated in toddlers (<3 years), childhood (3 to 8 years), and adolescence (9 to 18 years). Two reviewers independently extracted data. Quality was assessed using the Cochrane Risk of Bias tool, and data were pooled using random-effect models. Twenty-one randomised and one quasirandomised trial of variable methodological quality involving 3,680 infants were included. In toddlers born small, supplementation did not alter cognitive impairment (relative risk [RR] 1.00; 95% confidence interval [CI] 0.67 to 1.49; P = 0.99), and there were no differences in cognitive scores (mean difference [MD] 0.57; 95% CI -0.71 to 1.84; P = 0.38) or motor scores (MD 1.16; 95% CI -0.32 to 2.65; P = 0.12) between supplemented and unsupplemented groups. However, fewer supplemented children had motor impairment (RR 0.76; 95% CI 0.62 to 0.94; P = 0.01). In subgroup analyses, supplementation improved cognitive scores in boys (MD 5.60; 95% CI 1.07 to 10.14; P = 0.02), but not girls born small (MD -2.04; 95% CI -7.04 to 2.95; P = 0.42), and did not alter cognitive or motor scores in the subgroup of children born SGA. In childhood, there was no difference in cognitive impairment (RR 0.81; 95% CI 0.26 to 2.57; P = 0.72) or cognitive scores (MD 1.02; 95% CI -1.91 to 3.95; P = 0.50) between supplemented and unsupplemented groups. There were also no differences in blood pressure, triglyceride, and low-density lipoprotein (LDL) concentrations (all P > 0.05). However, supplemented children had lower fasting glucose (mmol/L: MD -0.20; 95% CI -0.34 to -0.06; P = 0.005) and higher high-density lipoprotein (HDL) concentrations (mmol/L: MD 0.11; 95% CI 0.02 to 0.19; P = 0.02). In subgroup analyses, there was no evidence of differences in blood pressure between supplemented and unsupplemented groups in boys or girls born small, or in SGA children. In adolescence, there was no difference between supplemented and unsupplemented groups in blood pressure, triglycerides, LDL and HDL concentrations, fasting blood glucose, insulin resistance, and fasting insulin concentrations (all P > 0.05). Limitations include considerable unexplained heterogeneity, low to very low quality of the evidence, and limited data beyond early childhood. CONCLUSIONS: In this systematic review and meta-analysis of randomised trials, we found no evidence that early macronutrient supplementation for infants born small altered later cognitive function, although there was some evidence that supplementation may decrease motor impairment in toddlers. Contrary to the findings from observational studies, evidence from randomised trials suggests that early macronutrient supplementation for infants born small improves some metabolic outcomes in childhood. PROSPERO REGISTRATION: CRD42019127858.

Vocal training technology for children with delayed psychoverbal development

The relevance of this research is based on the fact that delayed psychoverbal development is very common is very common in modern children. The problems caused by delayed psychoverbal development accompany many pathologies connected with the development of the nervous system. Therefore, the issues of providing help and training to such children are becoming increasingly relevant both in Russian and foreign pedagogy. The article looks at some aspects of the vocal training technology used in work with children who have delays in psychoverbal development in order to improve the level of their cognitive and communicative skills, develop their thinking, speech, memory and empathy and overcome psychological difficulties. Research methods include theoretical works by Russian psychologists and a pedagogical experiment in vocal training of children with health problems.

Natural sunlight plus vitamin D supplementation ameliorate delayed early motor development in newborn infants from maternal perinatal depression.

BACKGROUND: Increased cortisol has been shown to be negatively correlated with infant motor development. Sunlight help decrease the level of cortisol. Vitamin D is associated with infant motor development. The present study aimed to determine whether natural sunlight exposure plus vitamin D supplements could ameliorate delayed early motor development in little infants from maternal perinatal depression. METHODS: The term pregnant women waiting for delivery from the department of gynecology and obstetrics were assessed depressive symptoms by Hamilton Rating Scale for Depression (HAMD). 120 normal and 229 depressed subjects were recruited. During 2 days postpartum, infant motor development were assessed by Neonatal Behavioral Assessment Scale (NBAS). Infants of 2-day-old in maternal depression group were divided into four groups: control group, conventional vitamin D supplements (400IU/d) group, high dose of vitamin D supplements group (1000IU/d), sunlight plus conventional vitamin D supplement group (400IU/d). Serum and hair cortisol (HairF) in mothers and infants were measured. RESULTS: The infants of perinatal depressed mothers displayed early motor developmental delay accompanied by increased cortisol. Sunlight plus conventional vitamin D supplement (400IU/d) were better than exclusive vitamin D supplements for the amelioration delayed early motor development in infants (p < 0.05). The infants exposure to sunlight 7-14 h/week plus conventional vitamin D supplement reached the best scores of motor development and the lowest HairF (p < 0.05). LIMITATIONS: We should have measured the serum 25OH-vitamin D concentrations. CONCLUSIONS: Sunlight plus vitamin D supplements could ameliorate delayed early motor development in little infants by decreasing cortisol from perinatal depression.

The contemporary view of intellectual and developmental disabilities: Implications for psychologists.

BACKGROUND: The field of intellectual and developmental disabilities (IDD) is currently experiencing a significant transformation that encompasses an integrated approach, especially regarding shared aspects such as a focus on the human and legal rights, the eligibility for services and supports, and an emphasis on individualized supports provided within inclusive community-based environments. Accompanying this transformation is the increased need of precision in both the operational definitions of IDD-related constructs, and the terminology used to describe the respective construct. METHOD: the specialized literature was revised, and previous works on the subject by the authors were updated. RESULTS: This article provides psychologists with the current definition of intellectual disability, operational definitions of intellectual disability and developmental disabilities constructs and associated terminology, and the parameters of an integrated approach to disability. CONCLUSIONS: Implications for psychologists who are involved in diagnosis, classification, and planning supports for persons with intellectual or developmental disability are discussed.