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Community Mental Health Journal Apr 2021The purpose of the study was to determine the acute and long term services and supports (LTSS) utilization, cost of health care and disparities in access of care for...
The purpose of the study was to determine the acute and long term services and supports (LTSS) utilization, cost of health care and disparities in access of care for individuals with Intellectual and Developmental Disabilities (IDD). Individuals with IDD on a waiver (receiving Medicaid-funded LTSS in community settings) compared to non-IDD individuals on a waiver control group were compared using Ohio Medicaid claims data from calendar year 2013. Results found the IDD Waiver population had lower utilization rates for emergency department visits, hospital admissions, and hospital readmissions within 30 days compared to the Non-IDD Waiver population and lower PMPM expenditures across all medical service categories except pharmacy. However, the IDD Waiver population possessed greater PMPM costs for LTSS and therefore greater overall costs of care. Furthermore, 94% of IDD Waiver individuals had an episode of care for neurological conditions, with the second most frequent episode of care being for mental health services. The two most frequent episodes of care for individuals in the Non-IDD Waiver group were for conditions related to treatment (medical/surgical) and musculoskeletal conditions. The goal of this research was to investigate the health care needs of individuals with IDD that may vary from other long term care populations. The differences in health care needs for individuals with IDD require health systems and care management that is tailored to the sub-population, with an emphasis on treatment for neurological and mental health conditions. The typical focus of care management efforts on reducing unnecessary utilization of hospital services may be less relevant to the IDD Waiver population. The results of this study will be used to make recommendations regarding the unique health care needs of individuals with IDD.
Topics: Child; Community Health Services; Developmental Disabilities; Healthcare Disparities; Home Care Services; Humans; Intellectual Disability; Medicaid; Ohio; United States
PubMed: 32591990
DOI: 10.1007/s10597-020-00669-6 -
Developmental Medicine and Child... Nov 2021
Topics: Child; Developmental Disabilities; Humans
PubMed: 34651310
DOI: 10.1111/dmcn.14995 -
Social Science & Medicine (1982) Jan 2022There is increasing interest in the role of contextual factors in promoting well-being among parents of children with developmental disabilities. This study aimed to...
OBJECTIVE
There is increasing interest in the role of contextual factors in promoting well-being among parents of children with developmental disabilities. This study aimed to examine whether social network types moderate the impacts of having a child with a developmental disability on parents' health.
METHODS
Using cross-sectional data from the Midlife in the United States survey (MIDUS 2 and Refresher cohorts), we analyzed a sample of 363 parents of children with developmental disabilities and 4,919 parents of children without developmental disabilities. K-means cluster analysis was implemented to identify a social network typology. Modified Poisson and negative binomial regression models estimated the effect of having a child with a developmental disability and the typology on parents' physical health (self-rated health, number of chronic conditions) and mental health (self-rated mental health, major depression).
RESULTS
The cluster analysis revealed two social network types. Parents of children with developmental disabilities were more likely to have "restricted/unsupported" networks, whereas parents in the comparison group were more likely to have "diverse/supported" networks. Social support was more important for differentiating the network types of parents of children with developmental disabilities, while social integration was more salient for the comparison group. Parents of children with developmental disabilities fared worse on all outcomes relative to parents of children without disabilities. However, the typology had a compensatory psychological effect; the diverse/supported network type conferred greater mental health benefits to parents of children with developmental disabilities than to those in the comparison group. The diverse/supported network type was also associated with better physical health, but the associations did not differ between the two parent groups.
CONCLUSIONS
The results of this study emphasize the importance of social determinants of well-being for those with exceptional parenting responsibilities. Strengthening social networks may have a particularly positive impact on such parents' mental health.
Topics: Adult; Child; Cross-Sectional Studies; Developmental Disabilities; Humans; Parenting; Parents; Social Networking; United States
PubMed: 34891030
DOI: 10.1016/j.socscimed.2021.114623 -
Developmental Medicine and Child... Mar 2020
Topics: Developmental Disabilities; Humans; Neurology; Pediatrics
PubMed: 32128807
DOI: 10.1111/dmcn.14468 -
Developmental Medicine and Child... Mar 2020
Topics: Cerebral Palsy; Developmental Disabilities; Humans
PubMed: 32128808
DOI: 10.1111/dmcn.14467 -
Developmental Medicine and Child... Jan 2020
Topics: Developmental Disabilities; Humans; Neurology; Pediatrics
PubMed: 31922255
DOI: 10.1111/dmcn.14409 -
Journal of Intellectual Disability... May 2022Due to the functional, cognitive and communication impairments associated with intellectual and/or developmental disabilities (IDD), adaptations to service delivery...
BACKGROUND
Due to the functional, cognitive and communication impairments associated with intellectual and/or developmental disabilities (IDD), adaptations to service delivery during the COVID-19 pandemic may impact people with IDD differently than others. For community and hospital-based services, this study describes the proportion of adults with and without IDD who used health care in the year pre-COVID-19 and the first year of the pandemic.
METHODS
This retrospective cohort study used linked health administrative databases to identify adults aged 18-105 years with and without IDD using unique encoded identifiers. Counts and proportions of adults who used health care services were reported for the pre-COVID-19 year (16 March 2019 to 14 March 2020) and the first COVID-19 year (15 March 2020 to 15 March 2021).
RESULTS
Across services, the proportion of adults who used services was lower during the first COVID-19 year compared with the year prior, except for virtual physician visits that increased markedly for people with and without IDD. While the proportion of adults who used services was higher for those with IDD compared with those without IDD for both years, differences were greatest for mental health emergency visits and hospitalisations; adults with IDD were 6.3 to 10.9 times more likely to use these services than others with no IDD during the pandemic.
CONCLUSIONS
During the first COVID-19 year in Ontario, Canada, service use decreased for all service types, except for virtual physician visits. In both years, adults with IDD remained more likely to use services than other adults, with the largest differences in use of mental health hospitalisations and mental health emergency department visits.
Topics: Adult; COVID-19; Child; Delivery of Health Care; Developmental Disabilities; Hospitals; Humans; Intellectual Disability; Ontario; Pandemics; Retrospective Studies
PubMed: 35353400
DOI: 10.1111/jir.12929 -
Journal of Autism and Developmental... Feb 2023This paper offers an overview of the current status of individuals with autism spectrum disorders (ASD) and developmental disorders (DD) in Oman. A review of demographic... (Review)
Review
This paper offers an overview of the current status of individuals with autism spectrum disorders (ASD) and developmental disorders (DD) in Oman. A review of demographic and background information about Oman is first presented, followed by an overview of the current status of individuals with autism and developmental disorders, in terms of disability-related legislation, prevalence and diagnosis, as well as treatment and education. In the last section of the paper, major challenges faced in the field are addressed, including lack of autism awareness, lack of healthcare and educational programs or related services, lack of highly qualified professionals to implement evidence-based practices, issues regarding early identification and early intervention, as well as issues pertaining secondary transition, independent living and employment. Corresponding recommendation is proposed at the end of each challenge.
Topics: Humans; Autism Spectrum Disorder; Developmental Disabilities; Educational Status; Employment; Oman; Child
PubMed: 31903512
DOI: 10.1007/s10803-019-04360-y -
Pediatric Neurology Aug 2020Mutations in the X-linked gene WDR45 cause neurodegeneration with brain iron accumulation type 5. Global developmental delay occurs at an early age with slow progression...
BACKGROUND
Mutations in the X-linked gene WDR45 cause neurodegeneration with brain iron accumulation type 5. Global developmental delay occurs at an early age with slow progression to dystonia, parkinsonism, and dementia due to progressive iron accumulation in the brain.
METHODS
We present 17 new cases and reviewed 106 reported cases of neurodegeneration with brain iron accumulation type 5. Detailed information related to developmental history and key time to event measures was collected.
RESULTS
Within this cohort, there were 19 males. Most individuals were molecularly diagnosed by whole-exome testing. Overall 10 novel variants were identified across 11 subjects. All individuals were affected by developmental delay, most prominently in verbal skills. Most individuals experienced a decline in motor and cognitive skills. Although most individuals were affected by seizures, the spectrum ranged from provoked seizures to intractable epilepsy. The imaging findings varied as well, often evolving over time. The classic iron accumulation in the globus pallidus and substantia nigra was noted in half of our cohort and was associated with older age of image acquisition, whereas myelination abnormalities were associated with younger age.
CONCLUSIONS
WDR45 mutations lead to a progressive and evolving disorder whose diagnosis is often delayed. Developmental delay and seizures predominate in early childhood, followed by a progressive decline of neurological function. There is variable expressivity in the clinical phenotypes of individuals with WDR45 mutations, suggesting that this gene should be considered in the diagnostic evaluation of children with myelination abnormalities, iron deposition, developmental delay, and epilepsy depending on the age at evaluation.
Topics: Adolescent; Adult; Carrier Proteins; Child; Child, Preschool; Cohort Studies; Demyelinating Diseases; Developmental Disabilities; Epilepsy; Female; Humans; Infant; Iron Metabolism Disorders; Male; Middle Aged; Neuroaxonal Dystrophies; Phenotype; Exome Sequencing; Young Adult
PubMed: 32387008
DOI: 10.1016/j.pediatrneurol.2020.03.005 -
Genetics in Medicine : Official Journal... Mar 2021Genetic testing is routine practice for individuals with unexplained developmental disabilities and multiple congenital anomalies. However, current testing pathways can...
PURPOSE
Genetic testing is routine practice for individuals with unexplained developmental disabilities and multiple congenital anomalies. However, current testing pathways can be costly and time consuming, and the diagnostic yield low. Genome-wide sequencing, including exome sequencing (ES) and genome sequencing (GS), can improve diagnosis, but at a higher cost. This study aimed to assess the cost-effectiveness of genome-wide sequencing in Ontario, Canada.
METHODS
A cost-effectiveness analysis was conducted using a discrete event simulation from a public payer perspective. Six strategies involving ES or GS were compared. Outcomes reported were direct medical costs, number of molecular diagnoses, number of positive findings, and number of active treatment changes.
RESULTS
If ES was used as a second-tier test (after the current first-tier, chromosomal microarray, fails to provide a diagnosis), it would be less costly and more effective than standard testing (CAN$6357 [95% CI: 6179-6520] vs. CAN$8783 per patient [95% CI: 2309-31,123]). If ES was used after standard testing, it would cost an additional CAN$15,228 to identify the genetic diagnosis for one additional patient compared with standard testing. The results remained robust when parameters and assumptions were varied.
CONCLUSION
ES would likely be cost-saving if used earlier in the diagnostic pathway.
Topics: Abnormalities, Multiple; Child; Cost-Benefit Analysis; Developmental Disabilities; Humans; Ontario; Exome Sequencing
PubMed: 33110268
DOI: 10.1038/s41436-020-01012-w