Correlates of Social Participation of Adults with Intellectual and Developmental Disabilities.

Social participation has been linked to healthy aging, yet little is known about social participation during extended periods of time for adults with intellectual and developmental disabilities. The social participation of 777 adults with intellectual and developmental disabilities (aged 18-77 years), during a 4-year period, was examined. Sociodemographic, physical, and behavioral health-related correlates of engagement in social participation were investigated. Findings indicated that the majority of adults with intellectual and developmental disabilities engaged in at least a moderate level of social participation during the 4-years. Employment status, physical health, and Special Olympics participation were associated with a higher level of social participation. Findings have implications for supports and services seeking to promote social participation opportunities for adults with intellectual and developmental disabilities.

Associations Between Participation and Mental Health for Vulnerable Youth with Special Healthcare Needs.

OBJECTIVES: To understand the role of adverse child experiences and breadth of participation in the mental health outcomes of youth with special healthcare needs (YSHCN). Breadth of participation refers to the number of different activity contexts within which YSHCN participate. METHODS: The present, cross-sectional, study utilized the 2016 National Survey of Children's Health, a nationally representative survey of the physical and emotional health of children in the United States. In total, 5862 YSHCN, aged 12-17 years were included in the sample. RESULTS: Increased exposure to adverse childhood experiences was associated with an increased risk of both depression and anxiety for YSHCN. Low (versus high) breadth of participation was associated with an increased risk of both depression and anxiety. Breadth of participation altered the association between exposure to adverse childhood experiences and anxiety, such that YSHCN with high breadth of participation had lower rates of anxiety at all levels of exposure to adverse childhood experiences. CONCLUSIONS FOR PRACTICE: YSHCN with greater exposure to adverse childhood experiences and with low breadth of participation may be most vulnerable to depression and anxiety.

Adverse Childhood Experiences Are Associated with Unmet Healthcare Needs among Children with Autism Spectrum Disorder.

OBJECTIVE: To explore associations between level of adverse childhood experiences (ACEs) and unmet healthcare needs among children with autism spectrum disorder (ASD) using a population-based sample. STUDY DESIGN: Cross-sectional data from the 2011-2012 National Survey of Child Health were analyzed to estimate prevalence of unmet healthcare needs among children with ASD, aged 2-17 years (ASD = 1624; estimated population = 1 174 871). Multivariate Poisson and logistic regression models were used to estimate the relationship between reported ACEs and unmet healthcare needs among children with ASD. RESULTS: After we adjusted for all other variables, children with ASD who experienced 1-2 ACEs and 3+ ACEs were associated with 1.78 (P < .05) and 2.53 (P < .01) times the incidence rate of unmet healthcare needs in comparison with children without ACEs. Compared with children who experienced 0 ACEs, the adjusted odds of any unmet healthcare need were 2.34 (P < .01) and 2.66 (P < .01) for children with 1-2 ACEs and 3 + ACEs, respectively. CONCLUSION: Although limited to cross-sectional data, our study provides compelling evidence on the link between ACEs and unmet healthcare needs among children with ASD. It advances understanding of risk factors in the child and community context that contribute to health disparities and negatively impact healthcare access and use in this population.

Health Impact of Participation for Vulnerable Youth With Disabilities.

OBJECTIVE: We investigated the mental health impact of participation for youth with disabilities (YWD) in the child welfare system who had experienced victimization in the previous year. METHOD: Nationally representative data were obtained from the second National Survey of Child and Adolescent Well-Being. Our sample consisted of 247 YWD ages 11-17 yr. Multivariable probit regression analysis and a robust variance estimator were used to test the relationships among disability status, participation, and clinical depression. RESULTS: The probability of reporting clinical depression was 4 times higher for victimized YWD who reported lower breadth of participation than for victimized YWD who reported higher breadth of participation (6% vs. 26%; p = .03). CONCLUSION: Occupational therapy aimed at increasing opportunities for engagement in activities may enhance the mental health of the most vulnerable YWD. Participation in meaningful activities can improve both overall health and transition to independence for vulnerable YWD.

Disparities in adversity among children with autism spectrum disorder: a population-based study.

AIM: People with autism spectrum disorders (ASDs) experience disparities in health. An important but overlooked risk factor for health disparities in the ASD population is adverse childhood experiences (ACEs). The purpose of this study was to identify the prevalence of ACEs among families of children with and without ASD, using a population-based sample. METHOD: Data from the 2011 to 2012 National Survey of Child Health were analyzed to estimate prevalence of ACEs among families of children with and without ASD, age 3 to 17 years (ASD=1611; estimated population=1 165 34). The child's ASD status was obtained from parent report; ACEs were assessed with the modified Adverse Childhood Experiences Scale. Bivariate and multinomial logistic regression analyses were utilized to investigate the relationship between ACEs and childhood ASD status. RESULTS: ASD status among children was significantly and independently associated with higher probability of reporting one to three ACEs (adjusted relative risk ratio [aRRR] 1.53; 95% CI: 1.16-2.0; p<0.010) and four or more ACEs (aRRR 1.99; 95% CI: 1.35-2.91; p<0.010). INTERPRETATION: Children with ASD may experience a greater number of family and neighborhood adversities, potentially compromising their chances for optimal physical and behavioral health outcomes. Assessment and reduction of ACEs among families of young people with ASD could potentially contribute to the reduction of population health disparities.

Victimization and restricted participation among young people with disabilities in the US child welfare system.

AIM: The aim of this study was to assess the role of disability and victimization in young people's participation in developmentally salient activities by analyzing a nationally representative group of young people from the child welfare system (CWS). METHOD: Data were obtained from interviews with young people and their parents, recorded by the second National Survey of Child and Adolescent Well-Being (NSCAW II). The sample group consisted of 405 females and 270 males, ranging in age from 11 to 17 years (mean age 13y 6mo), and residing with families throughout the USA. The relationships among disability status, victimization, and participation were explored using weighted logistic regression analysis. RESULTS: Controlling for demographical and family-related factors, the probability of young people with disabilities (YWD), involved with the CWS, reporting two or more victimizations was 120% higher (p<0.01) than that of young people without disabilities. YWD in the CWS were almost twice as likely as young people without disabilities to report participation in only one or no developmentally salient activities. Controlling for all other variables, the odds of restricted participation were 6.8-fold higher (p<0.05) for victimized YWD in the CWS. INTERPRETATION: Young people with disabilities who report victimization are significantly less likely than their typically developing peers to participate in developmentally salient activities. Without coordinated efforts to prevent victimization of YWD in the CWS, there will be significant barriers to their participation, well-being, and independent living outcomes.

Facilitating coordination between medical and educational systems to improve access to pediatric therapies for preschool children with developmental delays and disabilities.

INTRODUCTION: A large portion of preschool-age children with developmental delays and disabilities (PCw/DD) do not receive recommended therapeutic services, including legally mandated school-based therapies. This study examines the feasibility of a community-clinical linkage using virtual patient navigation and a medical-educational care plan called Preschool and Me (PreM) to connect clinical settings serving historically marginalized communities with early childhood special education (ECSE) services. METHOD: Parents of PCw/DD attending an urban pediatric clinic from January to March 2022 were enrolled to receive PreM which included navigation support for ECSE, overcoming barriers accessing ECSE, and health care provider communication. Families completed measures of demographics and indicators of feasibility at baseline and 4-month follow-up. RESULTS: Of the 34 families referred, 30 were eligible and enrolled. Most parents identified as mothers (97%). Most participant children (70% male, 60% Black, 30% Hispanic) were enrolled in public health insurance (93%) and were not receiving any clinic-based therapies (93%). Parents overwhelmingly found PreM acceptable with the majority stating it would be a strong reason to continue care at the clinic. Among families who received PreM, 26 (96%) completed an individualized education plan (IEP) evaluation (96%). Of these, 24 (92%) children were eligible for an IEP. Nineteen children enrolled in an ECSE program; two families awaited school assignments and three families did not consent to the assigned school placement due to neighborhood safety concerns. DISCUSSION: Our findings suggest PreM was feasible, acceptable, and demonstrated promise in supporting families to navigate the ECSE process. Future studies examining effectiveness are warranted. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Impact of Adverse Childhood Experiences and Mental Health on School Success in Autistic Children: Findings from the 2016-2021 National Survey of Children's Health.

PURPOSE: School is an important developmental setting for children. Adverse childhood experiences (ACEs) are linked to overall lower educational attainment and are more prevalent in children with Autism Spectrum Disorder (ASD) than in their neurotypical peers. The aim of this study is to test the association between ACEs and school outcomes among autistic children and whether mental health conditions explain this association. METHODS: We combined 2016-2021 data from the National Surveys of Children's Health for children, ages 6-17, identified by parents as having ASD (N = 4,997), to examine the relationship between ACEs and school outcomes (grade progression, school attendance, and engagement). We analyzed depression and anxiety variables to investigate the extent to which mental health can explain the relationships between ACEs and school outcomes. RESULTS: ACEs were significantly associated with school outcomes. With increased ACEs, autistic children experienced a significant decrease in the odds of school attendance, grade progression and school engagement (p < .05). Furthermore, although depression and anxiety symptoms were significantly associated with school outcomes, they cannot explain away the enduring, strong relationship between ACEs and level of grade progression, engagement, and school success index. CONCLUSION: Our findings suggest ACEs predict school success among autistic children, with mental health conditions appearing to mediate the relationship between ACEs and key factors in school success. Efforts should be made to proactively identify and address the impact of ACEs and associated mental health conditions among autistic students.

BEhavioral Health Stratified Treatment (B.E.S.T.) to optimize transition to adulthood for youth with intellectual and/or developmental disabilities.

Youth with intellectual and/or developmental disabilities (IDD) often struggle with depression and anxiety, which adversely impacts transition to adulthood. Integrated behavioral health care coordination, wherein care coordinators and behavioral health specialists collaborate to provide systematic, cost-effective, patient-centered care, is a promising strategy to improve access to behavioral health services and address factors that impact transition to adulthood, including depression/anxiety symptoms. Current care coordination models (e.g., Title V Maternal and Child Health Bureau [MCHB]) do not include behavioral health services. The CHECK (Coordinated HealthCarE for Complex Kids) mental health model, hereby refined and renamed BEhavioral Health Stratified Treatment (B.E.S.T.), is a behavioral health intervention delivery program designed for integration into care coordination programs. This study aims to determine whether an integrated behavioral health care coordination strategy (i.e., MCHB care coordination plus B.E.S.T.) would be more acceptable and lead to better youth health and transition outcomes, relative to standard care coordination (i.e., MCHB care coordination alone). Results would guide future investment in improving outcomes for youth with IDD. This study is a two-arm randomized clinical trial of 780 transition-aged youth with IDD (13-20 years) to evaluate the comparable efficacy of MCHB Care Coordination alone vs. MCHB Care Coordination plus B.E.S.T. on the following outcomes: 1) decreased symptoms and episodes of depression and anxiety over time; 2) improved health behaviors, adaptive functioning and health related quality of life; 3) increased health care transition (HCT) readiness; and 4) improved engagement and satisfaction with care coordination among stakeholders.

A pilot study to evaluate awareness of and attitudes about prenatal and neonatal genetic testing in postpartum African American women.

OBJECTIVE: A pilot study to determine whether prenatal and neonatal sickle cell tests conform to the guidelines established by the American Congress of Obstetricians and Gynecologists and the American Academy of Pediatrics. METHODS: The project was initially structured as a pair of in-person interviews of postpartum women at the University of Chicago, the first collecting medical information and the second surveying the ethical, social, and legal implications (ELSI) of sickle cell trait (SCT). Due to inadequate enrollment, we elected to focus only on the second survey. Descriptive statistics and bivariate analyses were performed. RESULTS: A convenience sample was established from 205 women who had completed surveys of whom 12 (6%) received no prenatal care. Of the 60 women who completed both surveys, 15 (25%) were unsure of their hemoglobinopathy status. Of the 50 results we could verify, 2 women (4%) incorrectly recalled their hemoglobinopathy status. Of the 193 women who received prenatal care and completed the ELSI survey, 47 knew their hemoglobinopathy status from a previous pregnancy and 1 had sickle cell disease. Of the remaining 145 women, 53 (37%) recalled hemoglobinopathy testing during this pregnancy and 44 (30%) were unsure. Only 56 (39%) recalled being told they could refuse testing. Of the 115 women whose infants had newborn screening done prior to the interview, only 51 (44%) recalled discussions with a pediatric provider. CONCLUSION: Despite professional guidelines that stress the importance of education, counseling, and consent for prenatal and neonatal testing, postpartum women do not recall these conversations.

Attitudes and beliefs of sports medicine providers to sickle cell trait screening of student athletes.

OBJECTIVE: To describe the attitudes of members of the American Medical Society for Sports Medicine (AMSSM) toward the new National Collegiate Athletic Association (NCAA) policy to require all Division I student athletes be screened for sickle cell trait (SCT), have prior evidence of testing, or sign a waiver. DESIGN: Cross-sectional survey of members of the AMSSM electronic mailing list was conducted. Descriptive, McNemar, and χ2 statistics were performed. SETTING: Internet survey. PARTICIPANTS: Of the 1765 AMSSM e-mail list members, 370 returned partial or completed surveys. MAIN OUTCOME MEASURES: Dependent variables included familiarity with the NCAA policy, support of universal or targeted screening programs, preferences regarding screening methodologies, and athletic restrictions or modifications for student athletes identified with SCT. Respondents' gender, race/ethnicity, and involvement as an NCAA team physician were independent variables. RESULTS: Of the respondents, 76% were men, 85% were whites, and 53% served as NCAA Division I team physicians. Ninety percent were aware of the policy. There was greater support for targeted (76%, 267 of 353) compared with universal (39%, 137 of 353; P < 0.01) screening, with targeting based on race/ethnicity and sport. Respondents supported targeted screening of varsity and freshman athletes in all NCAA divisions, but most (88%) also supported waivers. Respondents favored using existing medical records (73%) or Sickledex screening (71%) methodologies despite concerns about inaccuracies (16% for each methodology). Most respondents agreed that there is discrimination in athletic participation and obtaining insurance. CONCLUSIONS: There is lack of consensus within the AMSSM regarding the current NCAA SCT screening policy. Implementation must take into consideration potential discrimination.

Access to assistive technology (AT) information in Spanish on state and territory program websites: United States, 2018.

BACKGROUND: Compared to non-Hispanic white individuals, assistive technology (AT) utilization is lower among Hispanic individuals.1-7 In the US, Spanish is the 2nd most frequently spoken language. Greater than one-fifth of Spanish-speaking households are limited English proficiencty (LEP) households (i.e., all individuals over age 14 in the household speak English less than "very well").8 Availability of AT materials in Spanish is one factor influencing knowledge about and utilization of AT among Spanish-speakers. OBJECTIVE: To examine the availability of Spanish-language AT information on state AT program websites and to assess the relationship between availability and state demographic and linguistic characteristics. METHODS: In 2018, we evaluated 56 state and territory AT program websites for the availability of AT information in Spanish. We calculated 4 measures (US Hispanic population in the state/territory; Hispanic individuals as a proportion of state population; overall Spanish-speaking households, and Spanish-speaking, limited English proficient households) from the 2016 American Community Survey and created ranked lists for each measure. Point biserial (rpb) correlations were calculated to test associations between each measure and availability of AT information in Spanish on each program's website. RESULTS: Sixteen program websites (15 states, 1 territory) provided access to Spanish-language AT information. None of the 4 measures were strongly associated with this outcome (rpb ranged from 0.30 to 0.42). For any of the 4 measures, no more than half of states in the top 10 ranks offered online access to AT information in Spanish. CONCLUSIONS: Improving the online availability of AT information in Spanish is necessary to increase equity in AT utilization among Spanish-speaking people with disabilities.

Fragile X screening: attitudes of genetic health professionals.

Although genetic health professionals (GHP) are major stakeholders in developing and implementing fragile X (FrX) testing and screening guidelines, their attitudes about FrX testing and population screening are virtually absent in the literature. A survey was conducted of physician geneticists (geneticists) and genetic counselors (GC). The survey addressed GHP's attitudes towards (1) prenatal FrX carrier screening; (2) pre- and full mutation screening of male and female newborns; (3) the single best time for FrX screening over the lifespan; and (4) their willingness to test a normally developing child with a positive family history. Surveys were completed by 30% (273/894) of eligible GHP. Attitudes of geneticists and GC were mostly indistinguishable. The single most favored screening approaches were (1) preconception screening targeted at women with a positive family history (43%); and (2) universal preconception screening (29%). While only 6% and 11% declared universal prenatal and universal newborn screening (NBS) as the ideal time respectively, 73% and 60% respectively would support such programs. GHP would design a NBS program to test male and female infants and to identify both pre- and full mutations. Over half would agree to order FrX testing on some normally developing children with a positive family history. In expanding FrX testing and screening to low risk individuals, GHP prefer preconception screening as the single best time. The majority also support prenatal screening and NBS. If NBS were to be introduced, GHP prefer screening to identify boys and girls with both pre- and full mutations.

Maternal knowledge and attitudes about newborn screening for sickle cell disease and cystic fibrosis.

Illinois introduced mandatory newborn screening (NBS) for sickle cell disease (SCD) in 1989 and for cystic fibrosis (CF) in 2008. We examined maternal understanding of NBS for SCD and CF, and their knowledge of the genetics, symptoms, and treatments of both conditions. Our methods consisted of conducting interviews of inpatient post-partum women (>18 years and English speaking). Our results showed that of the 388 eligible participants, 34 self-identified as sickle cell carriers, 1 with SCD and 1 as a CF carrier. Almost 3/4 were African American (282/387). Although all but 5 women had prenatal care, only 35% (133/378) recalled their prenatal care provider mentioning NBS, and only 56% (217/388) of participants recalled nursery staff mentioning NBS. There was more self-reported familiarity with SCD (3.32/5) than CF (1.97/5, P < 0.001). Over 2/3 (260/388) of participants could not answer CF knowledge questions because they had never heard of CF. Among those who had heard of the conditions, mean knowledge scores were 66% for SCD (n = 372) and 63% for CF (n = 128). Bivariate analysis identified education, age, race, marital status, and insurance status as statistically significant. After linear regression education remained significant for both conditions. We conclude that in a sample of predominantly African American post-partum women, we found poor understanding of NBS, greater familiarity with SCD, and significant knowledge gaps for both SCD and CF. There are many missed educational opportunities for educating parents about NBS and specific conditions included in NBS panels in both the obstetric clinics and the nursery.

Pediatricians' attitudes toward resuscitation in children with chronic illnesses.

OBJECTIVE: Do not attempt resuscitation (DNAR) orders are becoming more common in children with chronic illnesses. In this study, we compare pediatricians' attitudes about DNAR orders in four venues. Our hypotheses are: 1) venue matters: acceptance of DNAR varies by where the arrest occurs; 2) specialty affiliation matters: acceptance of DNAR varies by pediatric specialization; and 3) the personal influences the professional: pediatricians are more likely to respect and recommend a DNAR if they would choose DNAR for their own child. METHODS: Surveys were sent to 150 pediatricians in each of four sections of the American Academy of Pediatrics: children with disabilities, critical care, emergency medicine, and school health. The survey included four hypothetical vignettes about DNAR in various venues (pediatric intensive care unit, chronic care facility, emergency department, and school) followed by three questions: 1) would you respect the family's choice for DNAR? 2) Would you recommend DNAR to the family? 3) Would you choose DNAR for your own child? Results were analyzed using SPSS software. RESULTS: Two hundred seventy-nine of 560 eligible surveys (50%) were returned. The majority of respondents were men (62%), white (85%), Christian (61%), and fellowship trained (70%). In three of the scenarios (pediatric intensive care unit, emergency department, and school), most pediatricians were willing to respect (>90%), recommend (>85%), and choose a DNAR for their own child (>75%). For a ventilator-dependent child living in a chronic care facility, respondents were significantly less likely to respect (81%, p < 0.001), recommend (76%, p < 0.001), or want a DNAR for their own child (68%, p < 0.001). In a multivariate analysis, no demographic characteristic consistently correlated with physicians' decisions. However, pediatricians' preferences for DNAR for their own child correlated with recommending DNAR (p < 0.001) for their patients. CONCLUSION: DNAR decisions have become well accepted in the pediatric community for both end-of-life and poor quality of life cases.

A pilot study to explore knowledge, attitudes, and beliefs about sickle cell trait and disease.

INTRODUCTION: In the United States, newborn screening programs universally identify newborns with sickle cell disease (SCD) and heterozygote carriers (sickle cell trait [SCT]). Although there is a consensus to disclose SCT to parents, there are limited empirical data about whether and how this information is transmitted to the carrier children. METHODS: In-person questionnaires were administered to parents with SCT and parents of a child with either SCD or SCT to examine the knowledge, attitudes, beliefs, and disclosure patterns about SCT of parents. RESULTS: Fifty-three adults were interviewed, half (27) of whom had a child with SCD. There was significant misunderstanding about sickle cell inheritance (mean score, 68%), but parents who have a child with SCD have better knowledge compared to those without a child with SCD (78% vs 58%, p = .002). Respondents perceive minimal stigma associated with SCT. Unless there is an affected proband, individuals with SCT rarely receive counseling or education outside of the family. CONCLUSIONS: There is significant misinformation about what it means to be a carrier and its health and reproductive implications. Formal professional counseling is rare, especially for those families without an affected proband. Strategies to increase the utilization of counseling and improve genetic literacy are necessary.

Children with developmental disabilities experience higher levels of adversity.

OBJECTIVE: Individuals with developmental disabilities (DD) experience significant health disparities. An overlooked risk factor for health disparities in the DD population is adverse childhood experiences (ACEs). The purpose of this study was to generate population prevalence data about level of adverse experiences among children with DD in comparison to children without DD and the extent to which potential confounders may influence observed associations between adversity and child DD status. METHODS: Data from the 2011-12 National Survey of Child Health (NSCH) were analyzed to estimate prevalence of adversity among families of children with and without DD, age 3-17 years (N = 62,428; DD = 2622). Level of adversity was assessed via parent response to the Adverse Family Experiences questionnaire. Bivariate and multinomial logistic regressions were utilized to investigate the relationship between adverse family experiences (AFEs) and child DD status, adjusting for covariates. RESULTS: Child DD status was significantly and independently associated with higher probability of reporting 1-2 AFEs (RRR = 1.28, 95% CI 1.06, 1.5) and 3+ AFEs (RRR = 1.60, 95% CI 1.16, 2.21). CONCLUSION: This study documents significant disparities in adversity among children with DD using a population-based sample. These adversities potentially compromise successful transition to adulthood and overall health outcomes.

Delayed Diagnosis and Treatment Among Children with Autism Who Experience Adversity.

The effects of family adverse childhood experiences (ACEs) on timing of ASD diagnoses and receipt of therapies were measured using data from the 2011-2012 National Survey of Children's Health. Parametric accelerated failure time models estimated the relationship between family ACEs and both timing of ASD diagnosis and receipt of therapies among US children (age 2-17 years; N = 1624). Compared to children without family ACEs, the adjusted effects of 1-2 and ≥ 3 ACEs resulted in prolonged time of diagnoses with time ratios of 1.17 and 1.23. Report of 1-2 and ≥ 3 ACEs were associated with a 22 and 27% increase in the median age of entry into services. ACEs may pose significant barriers to diagnoses and treatment of children with ASD.

Disparities in Life Course Outcomes for Transition-Aged Youth with Disabilities.

Close to 750,000 youth with special health care needs transition to adult health care in the United States every year; however, less than one-half receive transition-planning services. Using the "F-words" organizing framework, this article explores life course outcomes and disparities in transition-aged youth with disabilities, with a special focus on youth with autism, Down syndrome, and cerebral palsy. Despite the importance of transition, a review of the available literature revealed that (1) youth with disabilities continue to have poor outcomes in all six "F-words" domains (ie, function, family, fitness, fun, friends, and future) and (2) transition outcomes vary by race/ethnicity and disability. Professionals need to adopt a holistic framework to examine transition outcomes within a broader social-ecological context, as well as implement evidence-based transition practices to help improve postsecondary outcomes of youth with disabilities. [Pediatr Ann. 2017;46(10):e371-e376.].