Childhood disabilities and the cost of developmental therapies: the serviceprovider perspective.

PURPOSE: For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar. METHODS: This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians. RESULTS: Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options. CONCLUSIONS: We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies.

Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.

Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities: A scoping review.

BACKGROUND: Brain-based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer-based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer-to-peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS. METHOD: An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings. RESULTS: Fourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well-being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent-pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support. CONCLUSIONS: This review revealed that iP2PS has a positive impact on the emotional and psychological well-being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer-parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

Outcomes for Adults With Intellectual and Developmental Disabilities Receiving Long-Term Services and Supports: A Systematic Review of the Literature.

The impact of long-term services and supports on the quality of life of adults with intellectual and developmental disabilities (IDD) is not well understood given the highly complex nature of researching this topic. To support future research addressing this topic, we conducted a systematic literature review of studies addressing outcomes of adults with IDD receiving long-term services and supports. Results of this review describe current outcomes for adults with IDD who receive long-term services and supports and can be used to inform program evaluation, policy development, and future research.

Response to Referral Profile of Developmental Disabilities at a Tertiary Care Hospital in a Resource-limited Country.

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Closing Gaps in Public Services for US Residents With Intellectual and Developmental Disabilities.

This Viewpoint describes existing public health and social service systems for persons with intellectual and developmental disabilities as they transition to adult care, barriers and opportunities faced in service access, and potential actions to narrow these gaps and enhance equity.

Health and Education Services During the COVID-19 Pandemic Among Young Children with Autism Spectrum Disorder and Other Developmental Disabilities.

OBJECTIVE: Understanding how the COVID-19 pandemic affected children with disabilities is essential for future public health emergencies. We compared children with autism spectrum disorder (ASD) with those with another developmental disability (DD) and from the general population (POP) regarding (1) missed or delayed appointments for regular health/dental services, immunizations, and specialty services; (2) reasons for difficulty accessing care; and (3) use of remote learning and school supports. METHOD: Caregivers of children previously enrolled in the Study to Explore Early Development, a case-control study of children with ASD implemented during 2017 to 2020, were recontacted during January-June 2021 to learn about services during March-December 2020. Children were classified as ASD, DD, or POP during the initial study and were aged 3.4 to 7.5 years when their caregivers were recontacted during the pandemic. RESULTS: Over half of all children missed or delayed regular health/dental appointments (58.4%-65.2%). More children in the ASD versus DD and POP groups missed or delayed specialty services (75.7%, 58.3%, and 22.8%, respectively) and reported difficulties obtaining care of any type because of issues using telehealth and difficulty wearing a mask. During school closures, a smaller proportion of children with ASD versus another DD were offered live online classes (84.3% vs 91.1%), while a larger proportion had disrupted individualized education programs (50.0% vs 36.2%). CONCLUSION: Minimizing service disruptions for all children and ensuring continuity of specialty care for children with ASD is essential for future public health emergencies. Children may need additional services to compensate for disruptions during the pandemic.

Similar early intervention referral rates following in-person administration of the Bayley Scales of Infant and Toddler Development, 4th Edition versus Telehealth Administration of the Developmental Assessment in Young Children, 2nd Edition in the high-risk infant population.

BACKGROUND: Infants with prematurity, low birthweight, and medical comorbidities are at high risk for developmental delays and neurodevelopmental disabilities and require close monitoring. Due to the COVID-19 pandemic, high-risk infant follow-up (HRIF) programs have adapted to perform developmental assessments via telehealth. OBJECTIVES: Describe the referral rates to initiate, continue, or increase/add early intervention (EI) therapies based on in-person use of the Bayley Scales of Infant and Toddler Development, 4th Edition (BSID-IV) or telehealth use of the Developmental Assessment in Young Children, 2nd Edition (DAYC-2). METHODS: A retrospective chart review was conducted on 203 patients seen in the HRIF program at an academic medical center in Southern California. Patients were divided into in-person (BSID-IV) and telehealth (DAYC-2) assessment groups. Statistical analyses were performed to describe demographic characteristics, medical information, and referral rates for EI therapies by the types of visits. RESULTS: The in-person and telehealth groups demonstrated similar demographic and clinical characteristics and comparable referral rates for initiating EI therapies. Telehealth patients already receiving therapies were recommended to increase/add EI therapies at a higher rate compared to in-person patients. CONCLUSIONS: The BSID-IV is widely used to assess for developmental delays in the high-risk infant population, but in-person administration of this tool poses limitations on its accessibility. Telehealth administration of an alternative tool, such as the DAYC-2, can lead to similar EI referral rates as in-person administration of the BSID-IV. Increased use of telehealth developmental assessments can promote timely detection of developmental delays and minimize gaps in healthcare access.

[Catatonia in youth with developmental disabilities: challenges in recognition and management]. / Katatonie bij jongeren met een ontwikkelingsstoornis: uitdagingen in herkenning en aanpak.

Catatonia in children and adolescents is not rare and, as in adults, has a favorable outcome, provided it is recognized and treated promptly. Nevertheless, in clinical practice we encounter several obstacles in terms of diagnosis and treatment in this population of patients. We describe a 14-year-old boy with an intellectually disability and autism spectrum disorder (ASD) in which clinicians did not diagnose catatonia until 1 year after the development of symptoms. Moreover, hesitations surrounding the correct treatment led to its delayed initiation. With this case report we aim to contribute to reduced reluctance and increased alertness in the treatment of catatonia in adolescents with developmental disorders.

A Meta-Analysis of Treatment for Self-Injurious Behavior in Children and Adolescents With Intellectual and Developmental Disabilities.

Self-injurious behavior (SIB) among children and youth with developmental disabilities has not diminished in prevalence despite the availability of effective interventions, and the impact on quality of life for people and their families is devastating. The current meta-analysis reviews SIB intervention research between 2011 and 2021 using single-case experimental designs with children and youth up to 21 years old and provides a quantitative synthesis of data from high-quality studies including moderator analyses to determine effects of participant and study characteristics on intervention outcomes. Encouraging findings include a high level of effectiveness across studies in the decrease of SIB (Tau-U = -0.90) and increase of positive behavior (Tau-U = 0.73), as well as an increase in studies (relative to prior reviews) reporting intervention fidelity, generalization, maintenance, and social validity. However, our findings shed limited light on potential moderating variables in the development of interventions for children and youth who exhibit SIB. Of the potential moderators of intervention effects, only implementer (researcher/therapist vs. parent/caregiver) and setting (clinic vs. home) were significantly associated with improved outcomes. We discuss the need for more robust involvement of natural communities of implementers in SIB intervention research to better equip them to effectively and sustainably meet the needs of people they care for. We also discuss the importance of creating systems enabling broad access for children with SIB to effective interventions in service of reducing burden for people, families, and society over time.

Employment Interventions for People With Intellectual and Developmental Disabilities: A Delphi Study of Stakeholder Perspectives.

The purpose of this study was to examine the social validity of five different evidence-based and emerging pathways to employment (i.e., supported employment, customized employment, internships, apprenticeships, and postsecondary education) from the perspective of multiple stakeholders. A Delphi method was used to determine whether stakeholders are in consensus regarding the accessibility, affordability, acceptability, efficacy, and the cost-benefit ratio of these interventions. Findings indicated that all pathways were deemed socially valid via stakeholder consensus except for apprenticeships, which could not be determined as a result of limited stakeholder knowledge and experience with the pathway. Future efforts to improve employment outcomes for people with intellectual and developmental disabilities (IDD) should focus on better training for service providers and increased access to services.

Human immunodeficiency virus diagnosis and care among adults with intellectual and developmental disabilities who are publicly insured.

BACKGROUND: This study aimed to assess the prevalence of human immunodeficiency virus (HIV) testing, HIV diagnosis and receipt of HIV care among adults with intellectual and developmental disabilities (IDDs) who are publicly insured in the USA. DESIGN: This study is a cross-sectional analysis of Medicare-Medicaid linked data of adults with IDD who were publicly insured in 2012 (n = 878 186). METHODS: We estimated adjusted prevalence ratios of HIV testing, diagnosis and receipt of antiretroviral therapy (ART). We also identified the relationship between predisposing (age, gender, race and ethnicity), enabling (Medicare, Medicaid or both; rural status; geographical location; and county income) and need-related characteristics (IDD diagnosis and other co-occurring conditions) associated with these outcomes. RESULTS: Only 0.12% of adults with IDD who had no known HIV diagnosis had received an HIV test in the past year. The prevalence of HIV diagnosis among adults with IDD was 0.38%, although differences by type of IDD diagnosis were observed. Prevalence of HIV diagnosis differed by type of IDD. Among adults with IDD who were living with HIV, approximately 71% had received ART during 2012. The adjusted analyses indicate significant racial disparities, with Black adults with IDD making up the majority (59.11%) of the HIV-positive IDD adult population. CONCLUSIONS: Adults with IDD are a unique priority population at risk for HIV-related disparities, and the level of risk is differential among subtypes of IDD. People with IDD, like other people with disabilities, should be considered in prevention programming and treatment guidelines to address disparities across the HIV care continuum.

Measuring palliative care self-efficacy of intellectual and developmental disability staff using Rasch models.

OBJECTIVES: The objectives of this study were to evaluate the psychometric properties of a palliative care self-efficacy instrument developed for intellectual and developmental disability (IDD) staff using Rasch analysis and assess the change in palliative care self-efficacy between 2 time points using Rasch analysis of stacked data. METHODS: Staff from 4 nonprofit IDD services organizations in a US Midwestern state (n = 98) answered 11 questions with Likert-style responses at baseline and 1-month follow-up post training. Rasch analysis was performed to examine rating scale structure, unidimensionality, local independence, overall model fit, person and item reliability and separation, targeting, individual item and personal fit, differential item functioning (DIF), and change in palliative care self-efficacy between 2 time points. RESULTS: The rating scale structure improved when 5 response categories were collapsed to 3. With the revised 3 response categories, the instrument demonstrated good psychometric properties. Principal components analysis of Rasch residuals supported the assumption of unidimensionality. Model fit statistics indicated an excellent fit of the data to the Rasch model. The instrument demonstrated good person and item reliability and separation. Gender-related DIF was found in 1 item, and work tenure-related DIF in 3 items. Overall palliative care self-efficacy improved between 2 time points. SIGNIFICANCE OF RESULTS: Rasch analysis allowed for a more thorough examination of this palliative care self-efficacy instrument than classical test theory and provided information on rating scale structure, targeting, DIF, and individual persons and items. These recommendations can improve this instrument for research and practical contexts.

A Paradigm for Improving Transition Planning for Adolescents With Intellectual Developmental Disorder.

Families of children with intellectual and developmental disorder (IDD) face unique challenges while navigating the transition into adulthood, such as finding suitable housing, optimizing independence, fostering meaningful relationships, and identifying a vocation.1-3 Often, the daily struggles of managing the individual's needs overshadow essential long-term preparation. Individuals with IDD and their families need guidance to transition from an entitlement-driven system (special education) to multiple eligibility-driven systems (adult care, postsecondary education services, housing supports, etc). The majority of those currently involved in transition planning are school personnel, followed closely by family members. Few of these planning meetings include the individuals themselves or personnel from outside agencies, such as social services and mental health.2 The complexity of these systems marginalizes this population by creating barriers to accessing necessary support. This is where psychiatrists, especially child and adolescent psychiatrists, can create a bridge.

"It starts with a knock on the door": Caregiver and provider perspectives on healthcare communication for youth with intellectual and developmental disabilities.

OBJECTIVES: Effective healthcare communication (HCC) is critical for youth with intellectual and developmental disabilities (IDD) who may have complex healthcare needs. The goal of this study was to gain family caregiver and provider perspectives on facilitators and challenges to effective HCC for youth with IDD. METHODS: Caregivers of, and providers for youth with IDD were recruited from the community to participate in virtual focus group (FG) sessions. FGs were 60-90 min long and were facilitated by a research team consisting of caregivers and providers. The FGs were recorded, transcribed, and coded inductively for HCC themes. RESULTS: Nineteen stakeholders participated in the FGs (caregivers: n = 14; providers: n = 5). Twenty-three themes were coded from the transcripts and were categorized by whether they focused on providers, caregivers, or healthcare systems. CONCLUSIONS: Provider behaviors such as active listening and demonstrating humility were found to be critical for effective HCC. Fewer caregiver factors, such as advocacy, and systems factors such as visit format, emerged from the FG data. FG themes represent challenges that future interventions must address. PRACTICE IMPLICATIONS: Efforts to improve HCC, and thus healthcare outcomes for youth with IDD, should address challenges identified by caregivers and providers.

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.

Using a life course health development framework to combat stigma-related health disparities for individuals with intellectual and/or developmental disability (I/DD).

In the U.S., 1 in 6 children has an intellectual and/or developmental disability (I/DD). This population experiences a multitude of negative health outcomes across the life course, relative to the general population. Stigma-the social devaluation of individuals with certain characteristics, identities, or statuses within interpersonal, educational, healthcare, and policy contexts-is a potentially preventable contributor to health disparities. To date, existing approaches for addressing and preventing stigma are limited to discrete and siloed interventions that often fail to address the lifelong, cumulative impacts of the specific types of stigma experienced by the I/DD population. In the current paper, we describe three elements of Life Course Health Development (LCHD)-a novel translational framework that draws on evidence from biology, sociology, epidemiology, and psychology-that healthcare providers can use to prevent stigma-related health disparities and improve outcomes for individuals with I//DDs. We discuss the utility of targeting prevention to sensitive periods; prioritizing interventions for the most damaging types of stigmas; and leveraging supports from multiple service systems and sectors. By incorporating evidence from life course science into efforts to address stigma-related health disparities, providers can more effectively and strategically prevent and combat stigma-related health disparities for the I/DD population in childhood and across the life course.

Infusing intellectual and Developmental disability training into Medical School curriculum: a Pilot intervention.

PURPOSE: Despite the rising prevalence of developmental disabilities (DD) in the US, there remains insufficient training for healthcare professionals to care for this medically underserved population - particularly adults. The National Inclusive Curriculum for Health Education (NICHE) aims to improve attitudes and knowledge towards people with intellectual and developmental disabilities (PWIDD); herein we describe one such intervention. METHOD: The intervention integrated didactic, panel presentation and clinical skills components into a 2nd year medical school curriculum.  The didactic session, covering  health and assessment of PWIDDs, history of IDD, stigma, etc., was co-taught by a developmental pediatrician, family medicine physician and social worker.  A panel of 3 adult self-advocates (SAs) with DD and a parent of a child with DD spoke about their lived experiences.  One week later, students practiced taking clinical histories of SAs within small group settings with adult PWIDDs, facilitated by medical school faculty. Students completed the NICHE Knowledge(49 items) and Attitudes (60 items) surveys. The evaluation analyzed pre/post intervention differences in a) knowledge and attitude scores overall and b) by student age, gender, intended medical specialty, and prior experiences with PWIDDs. Open-ended comments were analyzed with content analysis. RESULTS: Overall Knowledge scores increased from pre-to posttest (n = 85; 65[19] vs. 73[17], p = 0.00), while Attitudes score improved (i.e., decreased) (n = 88; 0.55 [.06] vs. 0.53 [0.06]); p = 0.00).  Higher pretest knowledge was found among female identified students (vs. others; p = 0.01) and those knowing > = 5 PWIDD (vs < 5; p = 0.02).  Students characterize their IDD training and experience prior to intervention as 'lacking' and described the sessions as effective. CONCLUSIONS: A brief (4 hours total) intervention was associated with modest but significant improved knowledge and attitudes towards PWIDDs. Replication and sustainability of this and other NICHE interventions are needed to fill gaps in PWIDDs' health care.

Examining Choice and Control for People With IDD Over Time.

Choice making is an important aspect of everyone's life in terms of fully becoming an adult within a democratic society. People with intellectual and developmental disabilities (IDD) are at risk for diminished choice making due to various factors, including guardianships; dependence on supports that are not person-centered; and, in some cases, limited capacity to express one's desires effectively. Independent Monitoring for Quality (IM4Q) data for 9,195 and 9,817 for adult services users with IDD were analyzed across two types of choice. Repeated measures mixed regression examined choice over time after controlling for age, support needs, residence type, and community type. We found significant increases in everyday choice making among IDD service users in Pennsylvania, but not in support-related choice. This study is the first to our knowledge to consider change in choice making, an important indicator of rights and inclusion for persons with IDD. By comparing three waves of data from the state of Pennsylvania (2013, 2016, and 2019), we were able to detect changes in choice making over time among home and community-based service (HCBS) users with IDD.