Intellectual Developmental Disabilities Research Articles

Barriers to Utilizing National Trust Act Programmes: A Qualitative Study of Caregivers of Children with Intellectual Developmental Disability (IDD)

Barriers to Utilizing National Trust Act Programmes: A Qualitative Study of Caregivers of Children with Intellectual Developmental Disability (IDD)

Population Level Mental Health Diagnoses for Youth with Intellectual/Developmental Disabilities Compared to Youth without Intellectual/Developmental Disabilities.

There is evidence in the literature that youth with intellectual/developmental disabilities (IDD) experience mental health issues to a greater extent compared to youth without IDD. In addition, transition from pediatric to adult services may be a period of increased anxiety and mental health problems for these youth. This study used a retrospective cohort design using population level administrative health data to compare mental health diagnoses between youth with IDD and youth without IDD; particularly examining the period when youth transition from pediatric health services to adult health services. In addition, this study compared the mental health of youth with various types of IDD (Down syndrome, autism, fetal alcohol syndrome and other rarer diagnoses). Results showed that at the population level youth with IDD have greater odds of anxiety/depression or psychotic illness than youth without IDD. Adjusted odds of anxiety/depression or psychotic illness also varied with age, income level, sex, and type of IDD. Youth with fetal alcohol syndrome had the greatest odds of both anxiety/depression and a psychotic illness. Odds of anxiety/depression increased from age 15-19 years old. Odds of a psychotic illness increased from age 15 to age 24 years old.

Cognitive reserve proxies for individuals with intellectual developmental disability: A scoping review

AbstractBackgroundCognitive reserve (CR) has not been studied in people with Intellectual Developmental Disability, a population with a high incidence of dementia. Commonly adopted CR proxies should be adapted to reflect more specifically the experiences of people with Intellectual Developmental Disability.MethodThis scoping review intended to identify CR proxies relevant to people with this condition.ResultsSome of these were the same already detected in a population without intellectual disabilities (education, occupation, physical activity, leisure, community and social activities); others were found to be specifically relevant for this population: type of schooling, parental educational level, environmental stimulation and living place.ConclusionsThese proxies need to be considered in studies on CR and Intellectual Developmental Disability and in clinical practice. Research on the protective effect of CR aims to encourage policies promoting lifestyle‐based educational and preventive interventions and overcome participation barriers for people with Intellectual Developmental Disability.

Norwegian perspectives on health care for people with intellectual and developmental disabilities

AbstractThe Norwegian health care system is built on individual rights and the principles of universal access, decentralization, and free choice of provider. Norway has universal health coverage, funded primarily by general taxes and by payroll contributions shared by employers and employees. Local authorities at the municipal level organize and finance primary health care services according to local demand and within national frameworks. Habilitation services are offered both in the primary health care and as a part of the specialist health services. They offer both inpatient and outpatient services for people with intellectual/developmental disabilities (IDD). National guidelines, known as Good health and care services for people with IDD, have recently (2021) been launched after various reports over the years of serious breaches and challenges in the health and care services provided to people with IDD.

Evaluation of adapted parent training for challenging behaviour in pre-school children with moderate to severe intellectual developmental disabilities: A randomised controlled trial.

There is limited evidence on the effectiveness of parenting interventions to improve disruptive behaviour in children with intellectual developmental disabilities. This clinical trial evaluated whether an adapted group parenting intervention for preschool children with intellectual developmental disabilities who display challenging behaviour is superior to treatment as usual in England. 261 children aged 30-59 months with moderate to severe intellectual developmental disabilities and challenging behaviour were randomised to either the intervention (Stepping Stones Triple P) and treatment as usual or treatment as usual alone. The primary outcome was the parent-rated Child Behaviour Checklist at 52 weeks after randomisation. A health economic evaluation was also completed. We found no significant difference between arms on the primary outcome (mean difference -4.23; 95% CI: -9.99 to 1.53; p = 0.147). However, a subgroup analysis suggests the intervention was effective for participants randomised before the COVID-19 pandemic (mean difference -7.12; 95% CI: -13.44 to -0.81; p = 0.046). Furthermore, a complier average causal effects analysis (mean difference -11.53; 95% CI: -26.97 to 3.91; p = 0.143) suggests the intervention requires participants to receive a sufficient intervention dose. The intervention generated statistically significant cost savings (-£1,057.88; 95% CI -£3,218.6 to -£46.67) but the mean point estimate in Quality Adjusted Life Years was similar in both groups. This study did not find an effect of the intervention on reducing challenging behaviour, but this may have been influenced by problems with engagement. The intervention could be considered by services as an early intervention if families are supported to attend, especially given its low cost.

Transition from Residential Special Educational Settings: Outcomes for Individuals with an Intellectual or Developmental Disability in England

Introduction. Young people with intellectual/developmental disabilities (IDDs) are often placed in residential educational placements. There is little research examining the use of such placements and outcomes following these, despite emerging recognition that they may be linked to out‐of‐area placements in adulthood (which are themselves often linked to poor outcomes for individuals). This study aimed to examine the characteristics of young people with IDD transitioning from a residential educational setting in England, describe post‐transition placement characteristics, and identify factors that predict post‐transition placement location. Methods. All residential educational placements in England were invited to complete a survey about the setting (e.g., size, pupil characteristics, specialism, and fees) and anonymous questionnaires for each young person with IDD who had recently transitioned from the setting (focusing on young person characteristics, educational placement, and post‐transition placement characteristics). Results. Responses were received for 47 residential educational settings and 320 young people. Young person characteristics differed between those who had attended a school or a college. 35.9% of post‐transition placements were out‐of‐area, with 31.2% of home‐area placements being in the family home. Out‐of‐area placement was found to be significantly predicted by young person characteristics, prior placement in a residential school, post‐transition placement in residential care, or in a setting that was linked to the educational placement. Discussion. Extrapolation from the current study suggests that several hundred young people transition from residential educational settings each year, more than a third of whom are likely to be transitioning to an out‐of‐area placement. This underscores the importance of improved support for this population around their transition. Implications for policy and practice are highlighted.

Differences in Telemedicine Use Between People With and Without an Intellectual or Other Developmental Disability During the COVID-19 Pandemic.

Telemedicine utilization of people with an Intellectual or Other Developmental Disability (IDD) during the COVID-19 Pandemic is not well known. This study compares telemedicine utilization of those with and without IDD prior to the pandemic to after it began. Using the Utah All Payers Claims Database from 2019 to 2021, the study identified telemedicine utilization of adults aged 18 to 62 years old in 2019. Propensity score matching was used to minimize observed confounders of subjects with and without IDD in 2019. Negative binomial regression was used to identify factors that were associated with telemedicine utilization. The final number of subjects in the analysis was 18 204 (IDD: n = 6068, non-IDD: n = 12 136 based on 1:2 propensity score matching). The average (SD) age of the subjects was 31 (11.3) years old in 2019. Forty percent of the subjects were female, about 70% of subjects were covered by Medicaid in 2019. Average (SD) number of telemedicine use in 2020 (IDD: 1.96 (5.97), non-IDD: 1.18 (4.90); P < .01) and 2021 (IDD: 2.24 (6.78) vs 1.37 (5.13); P < .01) were higher for the IDD group than the non-IDD group. The regression results showed that the subjects with IDD had 56% more telemedicine encounters than those in the non-IDD group (Incidence Rate Ratio (IRR) = 1.56, P < .01). The growth of telemedicine during the COVID-19 pandemic has the potential to reduce persistent healthcare disparities in individuals with IDD. However, quality of telemedicine should be considered when it is provided to improve health of subjects with IDD.

Identification of two novel and one rare mutation in DYRK1A and prenatal diagnoses in three Chinese families with intellectual Disability-7.

Background and purpose: Intellectual disability-7 (MRD7) is a subtype disorder of intellectual disability (MRD) involving feeding difficulties, hypoactivity, and febrile seizures at an age of early onset, then progressive intellectual and physical development deterioration. We purposed to identify the underlying causative genetic factors of three individuals in each Chinese family who presented with symptoms of intellectual disability and facial dysmorphic features. We provided prenatal diagnosis for the three families and genetic counseling for the prevention of this disease. Methods: We collected retrospective clinical diagnostic evidence for the three probands in our study, which included magnetic resonance imaging (MRI), computerized tomography (CT), electroencephalogram (EEG), and intelligence tests for the three probands in our study. Genetic investigation of the probands and their next of kin was performed by Trio-whole exome sequencing (WES). Sanger sequencing or quantitative PCR technologies were then used as the next step to verify the variants confirmed with Trio-WES for the three families. Moreover, we performed amniocentesis to explore the state of the three pathogenic variants in the fetuses by prenatal molecular genetic diagnosis at an appropriate gestational period for the three families. Results: The three probands and one fetus were clinically diagnosed with microcephaly and exhibited intellectual developmental disability, postnatal feeding difficulties, and facial dysmorphic features. Combining probands' clinical manifestations, Trio-WES uncovered the three heterozygous variants in DYRK1A: a novel variant exon3_exon4del p.(Gly4_Asn109del), a novel variant c.1159C>T p.(Gln387*), and a previously presented but rare pathogenic variant c.1309C>T p.(Arg437*) (NM_001396.5) in three families, respectively. In light of the updated American College of Medical Genetic and Genomics (ACMG) criterion, the variant of exon3_exon4del and c.1159C>T were both classified as likely pathogenic (PSV1+PM6), while c1309C>T was identified as pathogenic (PVS1+PS2_Moderate+PM2). Considering clinical features and molecular testimony, the three probands were confirmed diagnosed with MRD7. These three discovered variants were considered as the three causal mutations for MRD7. Prenatal diagnosis detected the heterozygous dominant variant of c.1159C>T p.(Gln387*) in one of the fetuses, indicating a significant probability of MRD7, subsequently the gestation was intervened by the parents' determination and professional obstetrical operation. On the other side, prenatal molecular genetic testing revealed wild-type alleles in the other two fetuses, and their parents both decided to sustain the gestation. Conclusion: We identified two novel and one rare mutation in DYRK1A which has broadened the spectrum of DYRK1A and provided evidence for the diagnosis of MRD7 at the molecular level. Besides, this study has supported the three families with MRD7 to determine the causative genetic factors efficiently and provide concise genetic counseling for the three families by using Trio-WES technology.

EFFECTIVENESS OF PARENTING SKILL PROGRAM ON CHILDS ADAPTIVE BEHAVIORAMONG PARENTS OF CHILDREN WITH INTELLECTUAL DEVELOPMENTAL DISABILITY

Background: A child brings happiness, love and joy in the family and society and if a child born with Intellectual Developmental Disability (IDD), then parenting of IDD children requires a huge amount of liability, accountability, commitment and dedication. Children with intellectual disability are having debilitate physical and mental health conditions, lower longevity1. As parents are the primary caregivers, but lives of parents of children with IDD are much more complicated and stressful as compared to the lives of non-disabled childrens parents. Methodology: Quasi-experimental Time Series Research Design was used to assess the effectiveness of Parenting Skill Program on childs adaptive behavior among parents of children with Intellectual developmental disability in selected Special Schools of Delhi NCR.The tools used for data collection included a socio-demographic proforma and the Vineland Social Maturity Scale (VSMS). Structured interviews and pre-assessment tools, such as socio-demographic proforma and the Vineland Social Maturity Scale (VSMS), were administered to both experimental and control groups in the first month. Subsequently, the parenting skills program, consisting of 12 sessions, was implemented over a three-month period, with one session per week for parents in the experimental group. At the 6th, 9th, and 12th months, structured interviews using post-assessment tools were conducted with parents from both groups. Results: The findings of the study revealed thatthere was an improvement in the mean posttest score of childs adaptive behavior over the time. Specifically, at 6th month, it increased to (53.425±8.95), followed by (52.850±9.77) at 9th month and (55.288±8.87) at 12th month when compared to baseline score (46.362±8.09).This increase was found to be statistically significant within the group (F= 163.040, p 0.001).However, the control group, showed no significant change in the mean score of childs adaptive behavior and it remained same in 6th month, 9th month and 12th month as baseline, and no significant difference was observed within the group (F= 6.00, p 0.112). Hence, it could be interpreted that parenting skill program was effective in improving the childs adaptive behavior score of children with IDD in experimental group than in control group. Conclusion:It was concluded thatparenting skill program was effective in improving the childs adaptive behavior of children with IDD.

Our Lives, Our Voices: Impact of Self-Advocacy Program on Persons with Intellectual Developmental Disability

Our Lives, Our Voices: Impact of Self-Advocacy Program on Persons with Intellectual Developmental Disability

Effectiveness of L-serine supplementation in children with a GRIN2B loss-of-function mutation: Rationale and protocol for single patient (n-of-1) multiple cross-over trials

RationaleLoss-of-function (LoF) mutations in GRIN2B result in neurologic abnormalities due to N-methyl-D-aspartate receptor (NMDAR) dysfunction. Affected persons present with various symptoms, including intellectual developmental disability (IDD), hypotonia, communication deficits, motor impairment, complex behavior, seizures, sleep disorders and gastrointestinal disturbance. Recently, in vitro experiments showed that D-serine mitigates function to GluN2B (mutation)-containing NMDARs. 11 previous case reports are published on (experimental) L-serine treatment of patients between 1.5 and 12 years old with GRIN2B missense or null mutations, some of whom showed notable improvement in motor and cognitive performance, communication, behavior and abnormalities on electro encephalography (EEG). Our objective is to further evaluate the effectiveness of L-serine for GRIN2B-related neurodevelopmental disorder (GRIN2B-NDD), using an n-of-1 trial design, increasing the level of evidence. Methods/designThese n-of-1 trials, consisting of 2 cycles of 6 months, will be performed to evaluate the effect of L-serine compared to placebo in 4 patients with a GRIN2B LoF mutation. The aggregation of multiple n-of-1 trials will provide an estimate of the average treatment effects.The primary outcome is the Perceive-Recall-Plan-Perform of Task Analysis, assessing developmental skills. Secondary outcomes include Goal Attainment Scaling, seizure log books, EEGs, sleep log books, the irritability subscale of the Aberrant Behavior Checklist, the Bristol Stool Scale and the Pediatric Quality of Life Inventory. ConclusionThis study employs an innovative methodological approach to evaluate the effectiveness of L-serine for patients with a GRIN2B LoF mutation. The results will establish a foundation for implementing L-serine as a disease-modifying treatment in GRIN2B-NDD.

DDX3X Syndrome Behavioral Manifestations with Particular Emphasis on Psycho-Pathological Symptoms-A Review.

(1) Background: Identification of typical behavioral manifestations in patients with DEAD-Box Helicase 3 X-linked gene (DDX3X) variants plays a crucial role in accurately diagnosing and managing the syndrome. The objective of this paper was to carry out a review of medical and public databases and assess the behavioral features of the DDX3X syndrome (DDX3X), with a particular focus on psycho-pathological symptoms. (2) Methods: An extensive computerized search was conducted in various databases, including PubMed, Medline Complete, Science Direct, Scopus, and Web of Science. Specific keywords and Medical Subject Headings were used to ensure the inclusion of relevant studies. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were applied to assess the methodological quality of the manuscripts. (3) Results: Only nine papers out of the 272 assessed met the inclusion criteria. These articles revealed various psycho-pathological manifestations in patients with the DDX3X syndrome. Intellectual disability (ID) or developmental disability (DD), speech delay, autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), generalized anxiety disorder (GAD), self-injurious behaviors (SIBs), sensory symptoms and sleep disturbance were demonstrated to be the most common psycho-pathological behavior manifestations. (4) Conclusions: Patients with the DDX3X syndrome manifest a wide spectrum of psycho-pathological symptoms. A comprehensive investigation of these symptoms in patients is essential for early diagnosis and effective therapy.

THU168 PRMT7 Gene Mutation—A Rare Genetic Syndrome With Novel Endocrine Associations

Abstract Disclosure: K. Nutakki: None. S. Nalla: None. P. Deb: None. A. Vulpala: None. Background: Causes of short stature in children include pathologic causes (genetic diseases, underlying systemic disease, or growth hormone deficiency) and non-pathological variants such as familial and constitutional short stature. Genetic causes include Turner’s syndrome, SHOX mutations, Noonan’s syndrome and Silver- Russel syndrome besides others. Homozygous/compound heterozygous mutations in Protein Arginine Methyltransferase 7 (PRMT7) can result in Short Stature, Brachydactyly, Intellectual Developmental Disability and Seizures syndrome (SBIDDS) . Here, we report a child with SBIDDS syndrome who has associated endocrine manifestations of growth hormone deficiency and primary hypothyroidism. Case report: A 9-year-old male child, twin A of dichorionic diamniotic gestation, presented to the Endocrine OPD with short stature. There was a history of developmental delay, seizure disorder and mild intellectual deficit. Excessive weight gain was observed since 4 years of age. On examination, he was short with abdominal obesity, brachydactyly, simian crease and macroglossia. Height was below 3rd centile and weight at the 97th percentile. SMR was pre-pubertal. Investigations confirmed primary hypothyroidism.GH deficiency (peak GH after clonidine stimulation was less than 4 microgram/L) and reduced IGF-I levels were also found. Twin B was noted to have a normal height percentile. In both, skeletal maturation was consistent with chronological age. Twin A was treated with rGH and levothyroxine and responded well to rGH treatment. Whole exome sequencing revealed homozygosity for PRMT7 mutation in twin A with both parents heterozygous for the same gene mutation. His twin sibling, twin B was also found to be homozygous for the mutation, but he did not display any characteristics of the syndrome. Discussion: To the best of our knowledge, this is only the second reported case of SBIDDS syndrome (PRMT7 mutation) with documented growth hormone deficiency and only case with documented primary hypothyroidism. Height gain observed over the period of rGH treatment is suggestive of a possible role of GH/IGF-I axis alterations as contributors of growth impairment in these children. PRMT7 encodes for an arginine methyltransferase, involved in several biological processes, such as DNA transcription and repairing, RNA splicing, cell differentiation. We would like to propose that children with SBIDDS syndrome may be tested for GH deficiency as part of their overall assessment. Likewise, it should be further explored if PRMT7 gene mutation testing should be recommended in a child presenting with short stature and one or more manifestations of SBIDDS syndrome. Presentation: Thursday, June 15, 2023

Quality of life of families with children with intellectual and developmental disabilities: Family health domain

Introduction: The most general definition of quality of life states that “quality of life is the degree of what makes life good.” Contemporary disability research increasingly relies on examining the quality of life of the whole family. Health and developmental outcomes are affected by the health of children and their environment. The objective of this study is to determine the difference in quality of life between families with children with disabilities and families with children without disabilities in the area of family health. Methods: The Family Quality of Life Questionnaire was used to assess quality of life. The test group consisted of 41 families of children with intellectual disabilities and developmental disabilities who use day care centers. The control group consisted of 69 families of children without disabilities whose members are employed in day care centers. Results: A statistically significant difference was found in the quality of life of families of children with disabilities and families of children without disabilities in the area of family health within the concept of satisfaction with family health (p = 0.0001), with respondents in the test group reporting a lower mean score of 3.1 ± 0.86 compared to subjects in the control group 3.94 ± 0.62. None of the respondents in the test group reported being very satisfied with family health, while for most respondents in both groups, 38 (92.8%) in the test group and 66 (95.7%) in the control group, family health was very important for quality of life. Conclusion: A statistically significant difference was found in the quality of life of families of children with disabilities and families of children without disabilities within the concept of achievement, the concept of satisfaction with family health and the determination is a statistically significant difference in relation to the existence of health services in the place of residence.

Health policy narratives contributing to health inequities experienced by people with intellectual/developmental disabilities: New evidence from COVID-19

This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a medical model and addresses national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities.

School-based prevention education for children and youth with intellectual developmental disabilities

Children with intellectual developmental disabilities (IDD) are at a heightened risk of experiencing child maltreatment (CM) when compared to their peers without IDD. Despite expanding evidence supporting the efficacy of school-based CM prevention programs, there are limited programs that tailor their lessons to the unique needs of children with IDD. This discussion first presents information regarding the prevalence and risk factors of CM among children with IDD. We then present existing peer-reviewed CM programs that have been developed for children with IDD. Finally, based on the latest research of CM prevention and special education, we present our considerations for a comprehensive school-based CM prevention program for children with IDD. Prevention programs for children with IDD may increase risk awareness among children with IDD and their parents, equip children with IDD with the protective skills necessary to navigate unsafe situations, and decrease the overall incidence of CM against this population.

Preliminary Report on the Efficacy of Music Therapy to Optimize the Compliance of Rett Syndrome Patients Attending Oral Hygiene Procedures

Background: Individuals with intellectual developmental disability (IDD) often face barriers in accessing dental care. The main aim of the present study was to test the feasibility and the outcome of oral hygiene (OH) procedures in Rett syndrome (RS) patients, and a secondary aim was to test the utility of music therapy during dental hygiene procedures. Methods: A case group (Group 1) of female patients with RS (stage 3 of disease, age &gt; 5 years and &lt;18 years) and a control group of age-matched healthy females (Group 0) were formed, and subgroups received the intervention of oral hygiene combined with a music therapy (Subgroup 1M and Subgroup 0M) or standard oral hygiene (subgroup 1W and subgroup 0W). The Simplified Oral Hygiene Index (OHI-S) was used to assess the effectiveness of oral hygiene measures. Results: The OHI-S at T0 was 1.41 in Group 1 and 2.58 in Group 0 (p value &lt; 0.001). The mean duration of the oral hygiene treatment was 7018″ (SD 3272″) in Group 1 and 873″ (SD 161″) in Group 0 (p value &lt; 0.001). The mean duration of OH was significantly higher in Subgroup 1M and Subgroup 0M. Discussion: Based on the results of our case-control study, OH procedures can be successfully performed in RS patients with good compliance and efficacy. In addition, our study provides preliminary evidence to suggest that music therapy may be a useful adjunct, as it appears to improve patient cooperation.

Caregiver perspectives on the continued impact of the COVID-19 pandemic on children with intellectual/developmental disabilities.

The COVID-19 pandemic has significantly impacted caregivers, especially those raising a child with an intellectual/developmental disability (IDD). While research has shown substantial disruption to the family, school, and occupational lives of the IDD community, little is known about the long-term impacts of COVID-19. To address this question, 249 caregivers were surveyed via an online questionnaire, between April and August of 2022 (more than 2 years into the pandemic) about potential impacts of the COVID-19 pandemic on their child's access to health- and school-based therapeutic services, caregiver mental health, and family life. The majority of caregivers reported disruptions in access to and quality of school-based therapeutic services for their child as well as a reduction in educational accommodations in the 2021-2022 academic year. Nearly half of caregivers reported feeling anxious and almost a quarter reported feeling depressed for the majority of their days. More than half of respondents reported decreased social support, and one-fifth reported employment disruptions and decreased access to food. These findings suggest that families of children with IDD are still experiencing ongoing negative impacts of the pandemic, emphasizing the critical need for continued support in the wake of the initial and more obvious disruptions caused by the COVID-19 outbreak.

Rights Are Necessary but Insufficient for the Achievement of the Full Inclusion of People with Intellectual and Developmental Disabilities

ObjectivesTwo forces which are in juxtaposition have been impacting upon the achievement of full inclusion and emancipation of people with intellectual and related developmental disabilities into society. The first is the history of the United Nations human rights declarations and conventions. While human rights initiatives have supported grassroots movements such as choice, self-determination, and person-centred supports, the second force, neoliberal philosophy, has commandeered these concepts into a culture of managerialism and individualism. Whether rights are necessary but insufficient for the achievement of the full inclusion of people with intellectual and developmental disabilities needed to be addressed.MethodsThe history of the human rights movement was explored leading up to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The impact of countervailing forces of neoliberal policies were explored. The ongoing development of models of disability were examined, as were threats to implementation and the realisation of outcomes.ResultsThe impact of neoliberal policies by member nations and the juridical nature of the CRDP were found to be limiting factors for genuine community acceptance and inclusion of people with disabilities, especially those with intellectual disabilities.ConclusionsMember nations conforming to human rights imperatives also need to encourage the building an ethical community in which reciprocal relationships are fostered and celebrated. Individualism and the market-based economies have failed to recognise the important role communality has played in the history of the human species.

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges.

The purpose of this article is to provide the reader with insight and enhanced understanding of the health care transition planning process for adolescents and emerging adults with intellectual disabilities and developmental disabilities. There are distinctly different programmatic considerations that need to be addressed in advancing their transfer of care to adult providers and promoting their transition to adulthood. These differences are due in part to the federal and state legislative initiatives that were established in the education, rehabilitation, employment, and developmental disabilities service systems. In contrast, no comparable federal and state mandates exist in the system of health care. The legislative mandates in education, rehabilitation, and employment are presented and discussed as well as the federal legislation on rights and protections for individuals with intellectual disabilities and developmental disabilities. Consequently, health care transition (HCT) planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for adolescents and emerging adults (AEA) with special health care needs (SHCN)/disabilities and for typically developing AEA. The best practice HCT recommendations are discussed in the context of this intellectual disabilities and developmental disabilities framework of care. Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities involves additional and distinctly clinical and programmatic models of care. Health care transition planning guidance for adolescents and emerging adults with intellectual disabilities and developmental disabilities are provided based upon best practice recommendations.