research papers on children with disabilities

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Research papers on children with disabilities

For example, these teams may help a child disabled from cancer treatments or recovering from a brain injury to reenter school and community programs. Users of comprehensive hemophilia and sickle cell disease treatment centers have had better outcomes mortality, emergency department, and hospital use than nonusers, although the studies did not control for selection biases Soucie, Nuss, Evatt, et al. Children with disabilities may also receive services from providers outside the usual health services.

For instance, public special education programs offer many services to children with disabilities, mainly through programs authorized by the Individuals with Disabilities Education Act IDEA. This act requires these programs to provide certain health-related services to ensure that children with disabilities receive appropriate educational services.

The act also provides for early intervention programs for children from birth to 3 years of age, also often including certain specialized therapies. We have no reports detailing the scope of services actually offered in educational settings. School systems vary greatly in how they provide and pay for these services. Some hire therapists and offer services directly, and others contract with outside agencies to provide services. States and school systems also finance school-based services differently, particularly in how much the schools can use Medicaid to pay for their services.

Clearly, coordinating school services more closely with other health services could both help families and lighten the administrative burden and redundant services. The federal and state Title V Maternal and Child Health programs also offer additional direct services to children with chronic conditions and developmental disabilities, again varying across the states Ireys, Hauck, and Perrin Some states provide both outpatient and inpatient health care services directly, whereas others offer only some subspecialty medical and surgical care programs.

Still others support a variety of services not usually covered by public or private insurance, and some use their resources mainly to develop systems of care. Care for children with disabilities is financed by a variety of insurance programs, both private and public, as well as the public and private direct service programs noted earlier.

Medicaid pays for the care of a moderate percentage of children, particularly those with disabilities, mainly because the SSI program in almost all states provides access to Medicaid insurance Perrin and Stein Data from the early s show that children with chronic health conditions had lower rates of insurance coverage than did children without such chronic conditions Butler, Budetti, McManus, et al. Since then, children with disabling conditions have had better access to public insurance, especially because more are enrolled in SSI.

Using the Child Health Supplement to the National Health Interview Study, Holl and colleagues found no differences in rates of insurance coverage among normal children, as opposed to children whose activities were limited due to a chronic condition, although the measure of chronic condition here was relatively crude.

Children with disabilities have higher rates of utilization and expenditures than other children do Lewit and Monheit ; Newacheck and McManus Sixty percent of Medicaid's expenditures for children are spent by about 10 percent of Medicaid recipients Adams, Ellwood, and Pine ; Kuhlthau, Perrin, Ettner, et al. The amount spent on children covered by SSI is 2. Those children on whom the most is spent are likely to use hospitals and long-term care, which account for more than half this amount.

It is important to note that many non-SSI children also use these services, indicating that many children with disabilities may not receive SSI benefits Ireys, Anderson, Shaffer, et al. Generally, pharmaceuticals account for a smaller proportion of expenditures for children than for adults, although here, too, the patterns are uneven, with children with cystic fibrosis and diabetes, for example, having relatively large pharmaceutical expenses Ireys et al. In general, compared with most private health insurance plans, Medicaid offers relatively generous benefits for people with disabilities, including much better long-term care benefits.

Nonetheless, the payment and support for such items as assistive devices can be very difficult to obtain, even for Medicaid users. Many children who need specialized devices such as wheelchairs that will fit their growing bodies find that Medicaid allows replacements only infrequently, and they often outgrow their equipment well before the authorized replacement time.

Different financing arrangements can either enhance or hinder care for children and adolescents with disabilities Perrin, Kuhlthau, Walker, et al. The different financing arrangements offer choices of whether copayments should be required and what should be included in the benefit package. Without having to adjust their payments to account for greater needs and use, plans have an incentive to minimize the use of services, so people with high health costs may face both direct and indirect barriers to enrollment.

In this case, risk-adjusted payments can help with access to needed services. Changes in health plans may also disrupt previous arrangements with both primary care and subspecialists. Some plans assign patients to primary care providers and then refuse to refer children with disabilities to subspecialists Ferris, Chang, Perrin, et al. Although enrollments in private plans may have peaked, the states now increasingly include their Medicaid populations in managed care plans but differ greatly in the degree to which they include children with disabilities Kaye, Curtis, and Booth Medicaid contracts and managed care plans may ration the provision of specialized therapies for people with disabilities e.

A child who has an ambiguous diagnosis but a clear need for specialized therapies is one example of this problem. Accordingly, it is important to clarify the strength of the evidence for the use of specialized therapies, in order to fill in the gaps in evidence and to consider alternatives to determining medical necessity while awaiting better evidence.

The remarkably small amount of evidence regarding the use of specialized therapies for children and adolescents makes determining medical necessity particularly important for this age group. The field of quality assessment in general lacks an adequate evidence base.

Most evidence reports and practice guidelines have dealt with relatively brief episodes of care or illness, paying less attention to long-term clinical management. A recent report by the Institute of Medicine evaluating the quality of long-term care concentrated on nursing homes, emphasizing standards, staffing, and measurement, but admitted that there was little information about quality assessment and improvement in other long-term care settings Institute of Medicine a.

Although the report documented the growing numbers of children and adolescents with disabilities needing care over the long term, it offered little advice about assessing quality for this population. Thus, it has been difficult to measure the quality of long-term clinical management and care for all people with disabilities, especially for younger populations who receive most of their care in noninstitutional sites.

Until recently, the published practice parameters and clinical guidelines of the American Academy of Pediatrics AAP have addressed only acute situations. For example, the AAP published guidelines for the management of acute exacerbations of asthma, but none for the long-term management of asthma although it did endorse the NHLBI guidelines.

The AAP recently published its first guidelines for a chronic condition, the treatment and long-term management of children with ADHD, although the publication notes the limited evidence for key aspects of long-term care American Academy of Pediatrics Disease management programs have improved the care of adult populations with several chronic conditions.

Their applicability to children's health has been limited mainly to asthma, and the epidemiology of childhood disability with large numbers of individually rare conditions makes the widespread use of these programs less promising than for adults. Nonetheless, the care guidelines of some specialized centers could supplement the disability management programs for certain childhood populations, even when the condition is relatively rare—for example, the care of children hospitalized with sickle cell disease or leukemia.

Few studies or controlled trials have examined the efficacy of specialized therapies for children, and those few offer only limited support for their use Palmer, Shapiro, Wachtel, et al. Several systematic reviews of therapies note this lack of evidence.

Because of the very limited database and because practitioners have legitimate disagreements about the appropriate management of different conditions, most guidelines can only attempt to represent a consensus. It is important, therefore, that the utility and value of a variety of commonly used specialized treatments for disabling conditions be examined. Measuring the outcomes and health status of children is more challenging than it is for adults.

Several measures are available for specific areas of functioning e. Varni, with a particular interest in children with chronic conditions, has developed health-related quality of life measures for children Varni, Seid, and Kurtin ; Varni, Seid, and Rode Over the last five years, the WHO has revised and updated this classification for the new International Classification of Functioning ICF , now including more direct attention to disabilities in children and adolescents and to the measurement of their functioning World Health Organization But despite these studies, there are few good measures of outcome and health status for children, especially covering multiple aspects of child functioning, largely because of the difficulties of measuring functioning and ability at different ages and stages.

The functioning of a 3-year-old child with cerebral palsy requires a very different assessment from that of a year-old adolescent with cerebral palsy. Given the dependence of young children on the adults around them, usual measures of activities of daily living ADLs have little applicability, and the development of measurements has been hampered by the difficulties in determining significant deviations from normal early development and behavior Stein Few studies have addressed the errors in the long-term health care of young people with disabilities.

The complex communications among family, child, primary care clinician, and subspecialty and specialized therapy providers offer many opportunities for errors of omission, with each party thinking that another is responsible for certain parts of the treatment program Kanthor, Pless, Satterwhite, et al.

Problems in communication may also mean that a treatment plan has not had adequate attention or definition or that a recommendation from one provider has never found its way to the family. A second error-related problem has been in the area of access to the appropriate preventive services needed by all young people. As noted earlier, often most of the treatment plan and services provided are directed to the specific disabling condition rather than to the general health-related issues of the person with disabilities Kuhlthau, Walker, Perrin, et al.

Other sources of errors are those in prescribing, dispensing, and adhering to both medications and other aspects of treatment plans. Errors are most likely to occur during times of transition e. Transitions are stressful for children and parents and often require transferring direct care responsibilities, monitoring, and supervision from one provider to another or to the family.

The available databases for child and adolescent disability research include both administrative and survey data. In most cases, administrative data are limited to Medicaid claims, with relatively little information available about children insured by the more prevalent employment-based health insurance plans. Medicaid provides substantial information about the changing patterns of disability among children and adolescents, their utilization of services, access to specialized services, and expenditures.

The growth of Medicaid's managed care arrangements has made claims data less useful, insofar as providers have little incentive to use reliable diagnostic or procedure codes for patients. Furthermore, schools or early intervention programs provide many services for children with disabilities e. Analyses of Medicaid claims data require substantial technical expertise concerning eligibility, coding, provider identification, and the merging of complex files Cooper and Kuhlthau Our analyses indicate an underreporting of mental health and developmental retardation in claims data analyses Perrin, Kuhlthau, McLaughlin, et al.

Only the last of these contains much longitudinal information MEPS has some two-year longitudinal data , allowing assessment of the clinical and developmental trajectories of young people with disabilities. The surveys have gained much helpful information from dedicated attention to children e. These surveys contain good national estimates of rates of chronic conditions and disabilities, although in most surveys, the numbers of children with disabilities in general and with specific conditions are relatively small.

The CSHCN includes much larger numbers of children with special health care needs per state and thus will offer much richer information about children with disabilities. The initial data from this survey should be available in the fall of Van Dyck, McPherson, Strickland, et al. The broad variations in pathways for young people with disabilities and the importance of understanding the interaction of social characteristics, program participation, and long-term disability make a strong case for obtaining better longitudinal data for this population.

Most striking in my review is what we do not know about health services for children and adolescents with disabilities. The following is a partial list of potential research topics, organized according to the sections of my review. The list reflects those areas that appear most promising—or are most needed—to improve the quality of care of young people with disabilities and their families. In clinical and health services epidemiology, we need a better description of the changing numbers of young people with disabilities and especially how their functioning has been affected.

The changes in young people's disabilities merit careful evaluation of how the patterns of disability change over time, how the different courses for young people can be predicted, and what programs or services appear to influence those courses. We also need to know how to minimize the effects of disability on young people's abilities to engage in age-appropriate activities.

What characterizes the successful transition to adulthood by adolescents with a disability, and what services promote a successful transition? Finally, research should focus on the social and structural determinants of new epidemics of chronic conditions among children and adolescents and what determines whether these conditions become disabling. As noted earlier, the evidence on which most of the long-term clinical interventions and treatment are based is quite weak.

Research agencies, especially the National Institutes of Health, should begin extensive and coordinated research on chronic diseases and the treatment and management of disabilities. Given that most of the money spent on health care is for the nation's chronic diseases and disabilities Fox , this lack of investigation seems remarkable.

Future research agendas should address the efficacy of many specialized therapies, explore their usefulness for different disabilities, determine dose effects if any , and examine mechanisms by which they work. Several organizational and financing questions merit study, including research on the organization of care that takes into account the variations in providers of care and describes the arrangements by which children with disabilities receive services.

Such research should look at the current relationship between primary and subspecialty care providers and how variations in these arrangements affect the treatment of children and adolescents with disabilities. Studies of ways to enhance communication and other collaboration should focus on the principal organizational aspects of such arrangements, their effects on patient care processes and outcomes, and costs and efficiencies. These studies should also explore methods of program collaboration and the tradeoffs clinical, developmental, and health services of providing different services in different settings.

How have different organizational frameworks—for example, organized multispecialty programs or the use of multidisciplinary teams—succeeded in or failed to obtain needed care for children with disabilities? Additional research areas include the roles of families and the relationships of these roles to primary and subspecialty services.

How can we improve the communication among clinicians and between clinicians and families? Comprehensive studies of expenditures and utilization, taking into account the various sources of payment, are clearly needed, as is how different financing arrangements affect the organization of services. How do the different incentives for patients and providers affect access to and use of services for children with disabilities, including methods of adjusting payment for risk?

To determine benefit packages, plans need substantial information about costs and pricing. The recent Institute of Medicine report Crossing the Quality Chasm b includes in its recommendations the idea of basing care on continuous healing relationships between clinicians and patients. The report offers only a few recommendations about financing these relationships, however.

Research on financing should examine incentives to support the longitudinal view of a person rather than short-term episodic financing. As noted earlier, the databases for assessing children's health are sparse. One improvement would be making the Medicaid claims files consistent, similar to the Medicare claims data systems used for research on the care of elderly populations.

Research on quality and outcomes should focus on developmentally appropriate measures of health status and quality of life. Although recent work by the Foundation for Accountability has led to the creation of a quality measure for children with chronic conditions to be used in the assessment of the National Committee for Quality Assurance health plan Bethell, Read, Stein, et al.

Almost no attention has been paid to safety in the care of children and adolescents with disabilities. Research should determine the steps in care at which errors can occur and examine ways to minimize errors and improve safety. These are only a few suggestions for the research needed to improve outcomes for young people with disabilities. Attention to these issues can provide a much stronger base on which to determine the necessary services, recognizing the changes in disability among younger populations.

The author thanks Drs. Betsy Anderson for their helpful comments on an earlier draft of the manuscript. National Center for Biotechnology Information , U. Journal List Milbank Q v. Milbank Q. James M Perrin. Author information Copyright and License information Disclaimer. Harvard Medical School. Address correspondence to: James M.

Perrin, M. This article has been cited by other articles in PMC. Children and Adolescents with Disabilities: Epidemiology and Characteristics More and more children and adolescents are found to have chronic health conditions, many of which cause disabilities. Organization of Care for Children with Disabilities Children and adolescents with disabilities typically need many primary and subspecialty services, including various specialized therapies to maintain or improve their functioning Hobbs, Perrin, and Ireys Financing Care for Children with Disabilities Care for children with disabilities is financed by a variety of insurance programs, both private and public, as well as the public and private direct service programs noted earlier.

Quality and Outcomes The field of quality assessment in general lacks an adequate evidence base. Information Bases for Child and Adolescent Disability Research The available databases for child and adolescent disability research include both administrative and survey data. Very little longitudinal research had been published into the development of children with intellectual disability before the Warnock committee, and no such research was referenced in their report Department for Education and Science, The recommendations from the report regarded attending to the origin and course of the special educational needs of children including those with intellectual disability.

The aim of the current paper was to describe the areas that have received most attention in research on early development in the four decades since the Warnock report. To that end, we adopted a bibliometric approach and first asked what peer-reviewed longitudinal research evidence is available on early developmental pathways of children with intellectual disability, what topics of these studies were, and how the topics of this literature are related.

Second, we asked what the impact of this longitudinal work has been by mapping the topics of peer-reviewed publications that have cited the longitudinal work, again by describing and depicting the topics and their interrelationships and by examining time trends. The review questions were addressed by performing literature retrieval Liberati et al. Publications were selected if these: 1 used as inclusion criterion intellectual disability or a clinical condition with intellectual disability as a part of the phenotype as focal sample, not as comparison sample; per the goals of this review , 2 reported studies where the aim was to quantify non-experimental change in dependent variables or associations between independent and dependent variables on at least two time points i.

Publications were considered ineligible if no abstract was available and the full text version could not be retrieved to enable the investigators to assess eligibility. Query strings Appendix A were entered in the bibliographic databases of Scopus and Web of Science, which provide ongoing coverage of the large majority of international peer reviewed journals in the field of special education and rehabilitation.

The authors independently coded the titles and abstracts on eligibility criteria 1—3, turning to the full manuscript if information was missing or unclear. This resulted in candidate publications. After first screening, candidate publications were fully read to double check compliance on eligibility criteria 1—3, after which publications remained.

Figure 1. Flow-chart describing the steps from identification to inclusion of primary journal article reports on longitudinal studies of early development of children with intellectual disability. Publications were selected if these: 1 cited one or more of the longitudinal studies identified in step 1 as per the goal of the study , 2 had full bibliographic records electronically available with title, author list, publication year, abstract, keywords, and reference list to provide the data necessary for science mapping analysis , which limited the search to journal articles.

The citing records retrieved in step 2 were read into the software program VOSviewer 1. In addition, the program performs a weighted and parameterized variant of modularity-based clustering on the link strengths to reveal additional distinctions beyond those that can be derived from the two-dimensional scaling Waltman et al.

To map the topics and themes in the longitudinal studies on early development, a network was created of co-occurrence of terms extracted by natural language processing of titles and abstracts for nouns and adjective-noun combinations. Only terms that occurred 5 times or more were included. Terms were excluded if these referred to longitudinal research, young children, or intellectual disability because publications were already selected on that basis , if these described study methods given the interest in substantive focus , or if the terms appeared trivial such as type of publication, statistical terms, or country of study.

To map the topics and themes in the literature citing longitudinal work on early development, natural language processing was conducted similarly as for the longitudinal studies of titles and abstracts, now limited to terms that occurred at least 50 times. Terms were excluded if these described study methods given the interest in substantive focus , or if the terms appeared trivial such as type of publication, statistical terms, or country of study. The full list of deselected terms can be found in Appendix B.

References to the longitudinal studies of early development identified in step 1 of the study can be found in Appendix C. Figure 2 maps the machine extracted terms describing the longitudinal studies, indicating the weight of each term by its size , and mean publication year indicated by its color with redness indicating relatively recent use of these terms and blueness indicating relatively early use of these terms.

The links connecting terms represent their rate of co-occurrence. Of the domains of early development World Health Organization WHO , , cognitive, communication, and social-emotional skills were represented, with communication including language receiving most attention. The sensory-motor domain was not represented. The considerable scatter in the map, with little evidence of dominant topics among this modest set of longitudinal studies, precludes a coherent overall summary of dominant focus and trends.

Figure 2. Figure 3 shows the increase in publications citing the longitudinal studies of early development up until the last full year with complete bibliographic data. Figure 4 maps the machine extracted terms describing the publications that cited longitudinal studies, indicating the weight of each term by its size , and membership by its color of one of the three clusters that were extracted from the weights of the links between the terms. Only links with a minimum weight of 50 are displayed.

Figure 3. Figure 4. Terms referring to education did not occur within this cluster. No terms belonged to this cluster that referred to intervention or support, nor to education. To discern the most recent research on which longitudinal studies have had impact, Figure 5 overlays the clusters from Figure 4 with mean publication year. There is a clear trend of an increasing number of studies on autism spectrum disorder that cites longitudinal research on young children with intellectual disability.

Figure 5. Applied scientific research findings may improve understanding of a phenomenon or the processes associated with a problem's emergence or maintenance. However, the delay in time for such scientific findings feeding into interventions and practice can be substantial—perhaps as much as 20 years Contopoulos-Ioannidis et al. Evidence-based interventions are best informed by scientific findings and theory Craig et al.

Therefore, the research identified in the current study on the early development of children with intellectual disability is of substantial importance both scientifically and in relation to policy and practice.

In the systematic review stage of the current study, we identified longitudinal at least two time points, first data point before children turned 7 years old research studies addressing educational, psychological and related development of children with intellectual disability. This body of work has been published over more than four decades. Thus, although the total body of relevant work appears at first to be significant, the number of studies published on average per year is a modest 2.

This all suggests that the early development of children with intellectual disability has been relatively neglected internationally. Using science mapping approaches to examine the focus of the studies also suggests a lack of coherence or strategic direction for the field of early development in children with intellectual disability. Terms in the records of included studies Figure 2 were varied and showed few trends over time. Although still weak trends, there was some indication of reference to parenting and to a certain extent to family in the more recent research literature.

This may signal an increasing focus or recognition of the role of parents and the family in early development of children with intellectual disability, reflecting programmatic and collaborative efforts by people in the field e. However, given the relatively small number of total studies, this weak trend may have been driven purely by a small number of research groups publishing in the field. Also of note is that 41 of the studies referred to Down syndrome.

Although an important sub-group in the population of children with intellectual disability, this relatively large amount of studies referring to the group with Down syndrome seems to represent a relative neglect of other sub-populations and potential ascertainment bias in the current evidence base. Publications citing the core studies have been increasing over time, especially over the most recent 5 years to Figure 3. These data may indicate a growing and recent attention to the early development of children with intellectual disability, or at least in research addressing this topic.

The related aspect of the science mapping focus and trends of the 3, studies citing the original studies showed three clusters of research that have been citing studies about early development of children with intellectual disability Figures 4 , 5.

The first cluster shows that research referring to autism spectrum disorder has been citing studies of the early development of children with intellectual disability, and that this is a recent trend in particular. It is important to note that we did not search for research studies focused on autism in the absence of intellectual disability as our interest was in research on the early development of children with intellectual disability also including those who may have an additional diagnosis or label of autism.

However, drawing on research on the early development of children with intellectual disability in the autism literature may reflect a number of scientific trends. For example, this may reflect a simple increase in the volume of autism research as it has become a funding priority internationally.

Furthermore, children with intellectual disability and Down Syndrome in particular are often used as a comparison group in studies focusing on children with autism e. The autism research citing studies of early development of children with intellectual disability was not associated with frequent use of intervention-related terms.

Clarifying linkages and trends regarding autism and intervention will require more comprehensive mapping of the research on early development in children with autism. There was also a clear time trend for this cluster of more medical terms from citing studies Figure 5 appearing in older literature.

Our searches sought out research of a primarily psychological, social or educational nature on the development of children with intellectual disability. Therefore, it is of interest that a more medically-focused cluster of citing studies was found. However, the fact that this cluster of terms was found in older citing research may reflect a general move away from medical models of disorder to an increasing functional, activity, and participation focused understanding of disability World Health Organization, ; Bertelli et al.

The third cluster of terms from citing studies represents studies focusing on environmental factors. This third cluster was dominated by terms relating to family [including parent s ], but also included multiple terms relating to social dimensions of intervention and to education. Thus, there is a body of research citing studies of the early development of children with intellectual disability that has a dual focus on families, and on intervention and supports.

This body of work has been present in the field for some time, but does not have such a strong recent trend in the same way that autism is showing Figure 5. Given the key role of the family in early child development, one might have expected increasing interest in the developmental environment, as well as in the implications for family life.

However, the science mapping of citing studies did show a clear time trend for increasing occurrence of terms in citing studies that referred to intervention and support efficacy, effectiveness, practice, and support Figure 5 , showing that intervention as a component of the environment appears to integrate insights on development and considerations of the family context. In summary, we found a disappointingly small body of international research literature on the early development of children with intellectual disability but on a broad range of subjects suggesting lack of focus.

Science mapping analysis revealed some encouraging trends in the use of research on early development of children with intellectual disability. Most significantly, more recent research citing studies of early development in intellectual disability were more likely to also make reference to intervention and support. Perhaps of some concern was that, despite dominant terms relating to the family and child within the family in the early development studies themselves, recent citing studies were more likely to be referring to terms relating to autism than to the family.

Our analysis suggests a priority for more research on the early development of children with intellectual disability. Funding, organizing, and maintaining longitudinal studies in all fields is a considerable challenge. In intellectual disability, there are at least three additional challenges. First, the prevalence rate of intellectual disability even in childhood is low overall Maulik et al. Second, ascertainment of intellectual disability when children are very young is fraught with problems.

Intellectual and adaptive functioning of young children show variation across individuals and time, and time is needed to be able to conclude that functioning remains in the range for intellectual disability. In particular, the constructs of Global Developmental Delay or developmental delays in key domains e. Some etiologies e. Third, children who have lower levels of cognitive and adaptive functioning especially those with severe to profound intellectual disability present researchers with challenges given the paucity of measures of development and opportunities to test children to establish their developmental level.

These three challenges, and likely others, may explain the relatively small amount of research on the early development of children with intellectual disability. Despite increasingly clear data on the developmental inequalities affecting children with intellectual disability, it may also be the case that international policy has yet to fully recognize the developmental needs and priority for early intervention for this population of children. Without policy prioritization, funding for research on the early development of children with intellectual disability is also unlikely to be easily available, resulting in fewer incentives for researchers to focus their energy and careers in the field of intellectual disability.

We propose two inter-linked strategic developments to increase the volume and relevance of research on the early development of children with intellectual disability: Partnership and co-creation; and innovative and creative research designs and methods. Partnership and co-creation is needed at a policy level, across countries and cultures, and most importantly between families of young children with intellectual disability and researchers.

In terms of the latter, our science mapping did not identify a core of research referring to co-creation, co-production, or co-design with families of children with intellectual disabilities. Thus, families may not as a matter of course be involved in contributing to research questions about early development or partnering with researchers in longitudinal research processes.

An alternative explanation is that co-production and co-design may have been happening in the research literature but that the way research is reported by scientists does not emphasize these features. Either way, a stronger partnership between families and researchers is required. Closer connection with families will not only ensure directly relevant questions about early development of children with intellectual disability are asked, but will mean that the findings of early development research might be more rapidly applied at least by families, who have a considerable interest in ensuring the best possible developmental environment for their child.

Examples of co-production and co-creation by parents, professionals, and researchers are emerging in neighboring fields, leveraging the opportunities of digital platforms e. Thus, we call for families and researchers to work together strategically to bring early years development and the need for early intervention to the attention of policy makers who can ensure that the early development of children with intellectual disability becomes a policy priority.

Research is also needed on developing and evaluating models of co-production between families and researchers, and the putative impact of different approaches to this partnership on policy. In addition, families as partners will play a key role in the training and development of researchers working with young children with intellectual disability.

To keep the research questions relevant, and to ensure that research methods are inclusive especially considering the challenges associated with research with children with severe to profound intellectual disability , close connection and partnership with families are crucial. One strategy to address the challenges outlined earlier of a rare condition like intellectual disability, methods to ascertain likely intellectual disability early in development, and creative methods to include children with more severe intellectual disability is to foster scientific partnership.

This requires not only that researchers join forces, but research funding agencies, organizations representing and working with families, and regulators also participate in such teams cf. Webster, , for the neighboring field of special education.

International co-operation could increase available sample sizes, increase the overall size and relevance of research through collaborative funding arrangements, and enhance agreement to use similar measures and tools. For example, in the Netherlands, a minimal data set was developed to facilitate interoperability and reusability of data to answer questions, for example, affecting smaller numbers of children such as those with rare genetic conditions associated with intellectual disability Kunseler et al.

Research teams working together could also share and plan to address key questions in the field strategically e. While co-production needs to be carefully considered on a case by case basis Oliver et al. The second area of strategy to change the trajectory of research on the early development of children with intellectual disability is to take advantage of new and emerging research methods and designs. We suggest four general approaches that would benefit early development research in intellectual disability.

First, countries around the world have been investing more in administrative data across multiple domains of public policy, but including children and families. Early development research on children with intellectual disability would benefit from international standards for data to gather about young children that would allow those with an intellectual disability to be identified with some confidence.

Second, many countries also invest in large population-based studies of children and families. It is possible in some of these to identify children who are likely to have an intellectual disability and related developmental conditions and thus to uniquely consider matters of child development at a population level cf. Totsika and Hastings, When making these national investments, it would not take much additional effort for the designers of population surveys to include methods that would allow children with intellectual disability to be more easily identified.

Exclusion from population level surveys is in any case likely inconsistent with the rights of people with ID to be included in matters related to their health and well-being United Nations, Third, although the consent and data sharing issues will need to be considered very carefully, families of young children with intellectual disability across collaborating international research groups could be approached to join national or international research registers cf.

In the current paper, and science mapping study, we have argued for the importance of basing early interventions for children with intellectual disability on the foundations of high quality developmental research. Mapping the use of early development research in intellectual disability, we found only moderate evidence of links to research on intervention and arguably a concerning disconnection. However, our analysis gives only a partial picture of the state of early developmental science in intellectual disability.

A related systematic review and synthesis of early intervention research in intellectual disability would be informative in this regard.

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CHEAP DISSERTATION INTRODUCTION WRITERS SITES FOR SCHOOL

In this article, I define disability as the inability to carry out age-appropriate daily activities as a result of a health condition or impairment; chronic conditions are health conditions e. Much of the research reviewed here does not distinguish between chronic condition and disability, although most of the factors discussed pertain to both groups.

Several factors distinguish children with disabilities from adults with disabilities: their epidemiology, the dynamic nature of children's development, children's dependence on adults for care, and the health care and financing systems supporting children. These factors form the outline of a health services research agenda Forrest, Simpson, and Clancy ; Kuhlthau, Walker, Perrin, et al. The first factor on the agenda is the epidemiology of childhood disability, which differs greatly from that of adults.

Adults relatively frequently have chronic conditions—such as hypertension, arthritis, coronary artery and other cardiovascular diseases, various cancers, and renal or pulmonary failure—that can lead to disability. Children and adolescents, however, have only a few chronic conditions in frequencies greater than 1 in 1, asthma, developmental disabilities, obesity, certain mental health conditions , and these conditions cause disability even less often Gortmaker and Sappenfield Other conditions, individually rare, account for many childhood disabilities.

Examples of these rare conditions are unusual chromosome deletions or metabolic disorders e. Second, childhood disabilities must be considered in the context of the child's stage of development, because the onset, manifestations, impact, treatment, and relevant outcomes of disabling conditions vary accordingly Perrin and Gerrity For instance, the loss of a limb affects newborns and their adjustment differently than it does year-olds.

Speech and occupational therapies also focus on different tasks at different ages. And the medications for a 4-year-old child with arthritis are different from those for a teenager with arthritis. Third, children's dependence on adults means that research on care must take into account a child's family and schools.

In addition, teachers and other providers affect children's access to and the quality of services they receive in school. Fourth, the great variance in financing systems for the care of children with disabilities creates special problems in studying and improving the care of young people and their families. Support for children's health care comes from a varied and variable mix of public and private insurance, state health programs e.

The SSI program provides cash benefits for low-income people with severe physical, developmental, or mental disabilities. In most states, SSI recipients also receive Medicaid coverage even when the household income may be higher than the state's usual eligibility levels for Medicaid. This mix of sources of support is made even more complex because of the various places and service systems in which children receive care. In this article, I describe some of the current health services research on child and adolescent disability in the areas of epidemiology, organization and financing of care, quality and outcomes, and information bases for childhood disability.

I also identify key issues for developing new and important health services investigations in these areas. More and more children and adolescents are found to have chronic health conditions, many of which cause disabilities. In , approximately 2 percent of American children and adolescents were identified by their parents as having to limit their activities because of a health condition lasting longer than three months; by the mids, this number had risen to more than 7 percent Newacheck and Halfon Ironically, much of this rise in child and adolescent disability reflects the markedly improved survival rates for many health conditions that had much higher rates of mortality half a century ago.

These improvements in health care also include better trauma services, which increase the survival rate of children and adolescents but also result in about 10 percent of their long-term disabilities MacKenzie Despite their better chance of survival, children and adolescents now face a number of potentially disabling health conditions that occur at much higher rates than was evident in earlier years. Most important are major new epidemics of several conditions, including obesity Fredriks, van Buuren, Wit, et al.

Laplante and Kaye note that in the past several years, children and adolescents have had the highest growth rates of disability of any population cohort. Although the 29 percent of SSI recipients with mental retardation represent a fairly homogenous group functionally despite a relatively wide variety of etiologies , the conditions causing disability among the other 71 percent are quite diverse.

Consequently, we probably cannot generalize the standards or quality of care for any single condition to the overall quality of care and outcomes for children with other disabling conditions. Most childhood chronic health conditions do not cause disability.

The Ontario Child Health Study indicated that 15 percent of children aged 4 to 11 years old have chronic health conditions, but only about 2. Newacheck and Taylor's study of the chronic conditions listed in the National Health Interview Study found that about 31 percent of children under 18 years of age have a chronic condition. Of these, about 8 to 9 percent have relatively minor limitations of activity because of their condition, and about 1. Thus, a relatively small number of children and adolescents are actually disabled, although several conditions can cause disability Gortmaker and Sappenfield Although these numbers vary partly because of differences in the definitions used in the studies, they help illustrate the different rates of disability and chronic health conditions among children and adolescents.

The disabilities of young people also have different trajectories from those of adults. Childhood and adolescence are characterized by more change and fewer lasting disabilities than are older age groups Gortmaker, Perrin, Weitzman, et al. The conditions of working-age and elderly populations are commonly either stable or decline over time, although they, too, may go into remission or become worse, as children's conditions do. In contrast, children may have a disability or a chronic condition at one time in their lives but appear much less ill or disabled five years later, and vice versa.

Healing and habilitation processes proceed differently in younger populations as well. For example, recent unpublished analyses of the children in the National Longitudinal Survey of Labor Market Experience, Youth Cohort NLSY , show slowly increasing rates of significant chronic illness with age, although about 40 percent of the children identified in no longer appeared to have a chronic condition in , indicating also a substantial number of children with new chronic conditions during this period.

Poor children have particularly high rates of disability, with at least some evidence that not only does poverty increase the incidence and severity of disability but also that a child's disability may impoverish the family even more Mashaw, Perrin, and Reno In addition, many conditions are more common in poor populations.

Controlling for potential confounders, poor children are 80 percent more likely to be limited in activity because of a chronic condition Newacheck and Starfield A child's disability has a major impact on the family's time and money, because of both their greater needs and the less time their parents can spend at work Kuhlthau and Perrin A study by Aday, Aitken, and Wegener found that 23 percent of primary caregivers in families caring for children assisted by ventilators were employed full time, and 15 percent worked only part time.

Fifty-four percent of primary caregivers of children assisted by ventilators reported having to stop working because of the child's disability. In contrast, 82 percent of the secondary caregivers worked full time, and none had to stop working because of the child's disability. Furthermore, mothers who had quit their jobs had little family support and a poor quality of life Thyen, Kuhlthau, and Perrin Children and adolescents with disabilities typically need many primary and subspecialty services, including various specialized therapies to maintain or improve their functioning Hobbs, Perrin, and Ireys Problems that children with disabilities face include lack of adequate primary and preventive services, barriers to subspecialty care and specialized therapies, limited coordination of services, and uneven access to schools and other direct-service providers.

Children's access to primary care varies with respect to both having a dependable source of primary care services and receiving appropriate care services. Children with spina bifida, for example, receive fewer immunizations than do comparable populations, despite having similar access to primary care Raddish, Goldmann, Kaplan, et al.

In regard to more complex disabilities, primary care physicians may not have adequate knowledge of the condition, its treatment, and the best monitoring practices. Only a few disabling conditions e. Centralizing the subspecialty treatment of children with relatively rare disabilities would help ensure at least a coordinated system of care for larger numbers of children, with the prospect of having stronger evidence to support care management recommendations and of being able to identify rare complications.

For example, a few children with diabetes develop problems with joint mobility, but the infrequency of this complication makes it unlikely that clinicians treating just a few children will ever see it or recognize it. Those centers that attract enough children with specific disabilities gain substantial experience with relatively unusual complications and provide access to newer treatments as they become available, although the children seen in these centers may not receive preventive services.

Such centers exist almost entirely in academic health centers, although occasionally large health plans have centers for more common conditions. Earlier studies showed that most children with fairly uncommon disabling conditions receive their specialized health care especially medical and surgical care in centralized units, usually academic health centers Weitzman Recent studies of children insured by Medicaid Kuhlthau, Ferris, Beal, et al.

The complexity of a child's disabilities—for example, a child requiring mobility assistance, specialized respiratory care, and nutritional supplementation—also means that a single health clinician cannot arrange or deliver all of these services. Indeed, coordinating primary and subspecialty care is difficult, indicating a need to study ways to enhance communication and coordination among clinicians.

Ideally, children and their families should receive most services in their home community, even if it is far away from a tertiary, highly specialized health center. They also should have access to such a health center for complications, updates on new treatments, and review of the child's treatment plan, especially as the child grows older.

Many children with developmental disabilities receive care in specialized centers of excellence University Centers for Excellence in Developmental Disabilities Education, Research, and Services , which provide a multidisciplinary team approach to evaluation and treatment. Supported by several sources, these centers can be found in every state, all associated with major universities and academic health centers. Although these units may emphasize diagnosis and evaluation, in many cases they also provide longitudinal care, based on a model that recognizes the multiple facets of a child's care in the context of family and community.

The idea of a multidisciplinary team may have important implications for children with other kinds of disabilities. The subspecialty programs of many academic health centers have physicians, nurses, social workers, nutritionists, and other therapists collaborating together. For example, these teams may help a child disabled from cancer treatments or recovering from a brain injury to reenter school and community programs.

Users of comprehensive hemophilia and sickle cell disease treatment centers have had better outcomes mortality, emergency department, and hospital use than nonusers, although the studies did not control for selection biases Soucie, Nuss, Evatt, et al. Children with disabilities may also receive services from providers outside the usual health services.

For instance, public special education programs offer many services to children with disabilities, mainly through programs authorized by the Individuals with Disabilities Education Act IDEA. This act requires these programs to provide certain health-related services to ensure that children with disabilities receive appropriate educational services. The act also provides for early intervention programs for children from birth to 3 years of age, also often including certain specialized therapies.

We have no reports detailing the scope of services actually offered in educational settings. School systems vary greatly in how they provide and pay for these services. Some hire therapists and offer services directly, and others contract with outside agencies to provide services. States and school systems also finance school-based services differently, particularly in how much the schools can use Medicaid to pay for their services.

Clearly, coordinating school services more closely with other health services could both help families and lighten the administrative burden and redundant services. The federal and state Title V Maternal and Child Health programs also offer additional direct services to children with chronic conditions and developmental disabilities, again varying across the states Ireys, Hauck, and Perrin Some states provide both outpatient and inpatient health care services directly, whereas others offer only some subspecialty medical and surgical care programs.

Still others support a variety of services not usually covered by public or private insurance, and some use their resources mainly to develop systems of care. Care for children with disabilities is financed by a variety of insurance programs, both private and public, as well as the public and private direct service programs noted earlier.

Medicaid pays for the care of a moderate percentage of children, particularly those with disabilities, mainly because the SSI program in almost all states provides access to Medicaid insurance Perrin and Stein Data from the early s show that children with chronic health conditions had lower rates of insurance coverage than did children without such chronic conditions Butler, Budetti, McManus, et al.

Since then, children with disabling conditions have had better access to public insurance, especially because more are enrolled in SSI. Using the Child Health Supplement to the National Health Interview Study, Holl and colleagues found no differences in rates of insurance coverage among normal children, as opposed to children whose activities were limited due to a chronic condition, although the measure of chronic condition here was relatively crude. Children with disabilities have higher rates of utilization and expenditures than other children do Lewit and Monheit ; Newacheck and McManus Sixty percent of Medicaid's expenditures for children are spent by about 10 percent of Medicaid recipients Adams, Ellwood, and Pine ; Kuhlthau, Perrin, Ettner, et al.

The amount spent on children covered by SSI is 2. Those children on whom the most is spent are likely to use hospitals and long-term care, which account for more than half this amount. It is important to note that many non-SSI children also use these services, indicating that many children with disabilities may not receive SSI benefits Ireys, Anderson, Shaffer, et al.

Generally, pharmaceuticals account for a smaller proportion of expenditures for children than for adults, although here, too, the patterns are uneven, with children with cystic fibrosis and diabetes, for example, having relatively large pharmaceutical expenses Ireys et al. In general, compared with most private health insurance plans, Medicaid offers relatively generous benefits for people with disabilities, including much better long-term care benefits.

Nonetheless, the payment and support for such items as assistive devices can be very difficult to obtain, even for Medicaid users. Many children who need specialized devices such as wheelchairs that will fit their growing bodies find that Medicaid allows replacements only infrequently, and they often outgrow their equipment well before the authorized replacement time. Different financing arrangements can either enhance or hinder care for children and adolescents with disabilities Perrin, Kuhlthau, Walker, et al.

The different financing arrangements offer choices of whether copayments should be required and what should be included in the benefit package. Without having to adjust their payments to account for greater needs and use, plans have an incentive to minimize the use of services, so people with high health costs may face both direct and indirect barriers to enrollment. In this case, risk-adjusted payments can help with access to needed services.

Changes in health plans may also disrupt previous arrangements with both primary care and subspecialists. Some plans assign patients to primary care providers and then refuse to refer children with disabilities to subspecialists Ferris, Chang, Perrin, et al.

Although enrollments in private plans may have peaked, the states now increasingly include their Medicaid populations in managed care plans but differ greatly in the degree to which they include children with disabilities Kaye, Curtis, and Booth Medicaid contracts and managed care plans may ration the provision of specialized therapies for people with disabilities e.

A child who has an ambiguous diagnosis but a clear need for specialized therapies is one example of this problem. Accordingly, it is important to clarify the strength of the evidence for the use of specialized therapies, in order to fill in the gaps in evidence and to consider alternatives to determining medical necessity while awaiting better evidence.

The remarkably small amount of evidence regarding the use of specialized therapies for children and adolescents makes determining medical necessity particularly important for this age group. The field of quality assessment in general lacks an adequate evidence base. Most evidence reports and practice guidelines have dealt with relatively brief episodes of care or illness, paying less attention to long-term clinical management.

A recent report by the Institute of Medicine evaluating the quality of long-term care concentrated on nursing homes, emphasizing standards, staffing, and measurement, but admitted that there was little information about quality assessment and improvement in other long-term care settings Institute of Medicine a. Although the report documented the growing numbers of children and adolescents with disabilities needing care over the long term, it offered little advice about assessing quality for this population.

Thus, it has been difficult to measure the quality of long-term clinical management and care for all people with disabilities, especially for younger populations who receive most of their care in noninstitutional sites. Until recently, the published practice parameters and clinical guidelines of the American Academy of Pediatrics AAP have addressed only acute situations.

For example, the AAP published guidelines for the management of acute exacerbations of asthma, but none for the long-term management of asthma although it did endorse the NHLBI guidelines. The AAP recently published its first guidelines for a chronic condition, the treatment and long-term management of children with ADHD, although the publication notes the limited evidence for key aspects of long-term care American Academy of Pediatrics Disease management programs have improved the care of adult populations with several chronic conditions.

Their applicability to children's health has been limited mainly to asthma, and the epidemiology of childhood disability with large numbers of individually rare conditions makes the widespread use of these programs less promising than for adults. Nonetheless, the care guidelines of some specialized centers could supplement the disability management programs for certain childhood populations, even when the condition is relatively rare—for example, the care of children hospitalized with sickle cell disease or leukemia.

Few studies or controlled trials have examined the efficacy of specialized therapies for children, and those few offer only limited support for their use Palmer, Shapiro, Wachtel, et al. Several systematic reviews of therapies note this lack of evidence.

Because of the very limited database and because practitioners have legitimate disagreements about the appropriate management of different conditions, most guidelines can only attempt to represent a consensus. It is important, therefore, that the utility and value of a variety of commonly used specialized treatments for disabling conditions be examined.

Measuring the outcomes and health status of children is more challenging than it is for adults. Several measures are available for specific areas of functioning e. Varni, with a particular interest in children with chronic conditions, has developed health-related quality of life measures for children Varni, Seid, and Kurtin ; Varni, Seid, and Rode Over the last five years, the WHO has revised and updated this classification for the new International Classification of Functioning ICF , now including more direct attention to disabilities in children and adolescents and to the measurement of their functioning World Health Organization But despite these studies, there are few good measures of outcome and health status for children, especially covering multiple aspects of child functioning, largely because of the difficulties of measuring functioning and ability at different ages and stages.

Third, children who have lower levels of cognitive and adaptive functioning especially those with severe to profound intellectual disability present researchers with challenges given the paucity of measures of development and opportunities to test children to establish their developmental level. These three challenges, and likely others, may explain the relatively small amount of research on the early development of children with intellectual disability. Despite increasingly clear data on the developmental inequalities affecting children with intellectual disability, it may also be the case that international policy has yet to fully recognize the developmental needs and priority for early intervention for this population of children.

Without policy prioritization, funding for research on the early development of children with intellectual disability is also unlikely to be easily available, resulting in fewer incentives for researchers to focus their energy and careers in the field of intellectual disability. We propose two inter-linked strategic developments to increase the volume and relevance of research on the early development of children with intellectual disability: Partnership and co-creation; and innovative and creative research designs and methods.

Partnership and co-creation is needed at a policy level, across countries and cultures, and most importantly between families of young children with intellectual disability and researchers. In terms of the latter, our science mapping did not identify a core of research referring to co-creation, co-production, or co-design with families of children with intellectual disabilities.

Thus, families may not as a matter of course be involved in contributing to research questions about early development or partnering with researchers in longitudinal research processes. An alternative explanation is that co-production and co-design may have been happening in the research literature but that the way research is reported by scientists does not emphasize these features.

Either way, a stronger partnership between families and researchers is required. Closer connection with families will not only ensure directly relevant questions about early development of children with intellectual disability are asked, but will mean that the findings of early development research might be more rapidly applied at least by families, who have a considerable interest in ensuring the best possible developmental environment for their child.

Examples of co-production and co-creation by parents, professionals, and researchers are emerging in neighboring fields, leveraging the opportunities of digital platforms e. Thus, we call for families and researchers to work together strategically to bring early years development and the need for early intervention to the attention of policy makers who can ensure that the early development of children with intellectual disability becomes a policy priority.

Research is also needed on developing and evaluating models of co-production between families and researchers, and the putative impact of different approaches to this partnership on policy. In addition, families as partners will play a key role in the training and development of researchers working with young children with intellectual disability.

To keep the research questions relevant, and to ensure that research methods are inclusive especially considering the challenges associated with research with children with severe to profound intellectual disability , close connection and partnership with families are crucial. One strategy to address the challenges outlined earlier of a rare condition like intellectual disability, methods to ascertain likely intellectual disability early in development, and creative methods to include children with more severe intellectual disability is to foster scientific partnership.

This requires not only that researchers join forces, but research funding agencies, organizations representing and working with families, and regulators also participate in such teams cf. Webster, , for the neighboring field of special education.

International co-operation could increase available sample sizes, increase the overall size and relevance of research through collaborative funding arrangements, and enhance agreement to use similar measures and tools. For example, in the Netherlands, a minimal data set was developed to facilitate interoperability and reusability of data to answer questions, for example, affecting smaller numbers of children such as those with rare genetic conditions associated with intellectual disability Kunseler et al.

Research teams working together could also share and plan to address key questions in the field strategically e. While co-production needs to be carefully considered on a case by case basis Oliver et al. The second area of strategy to change the trajectory of research on the early development of children with intellectual disability is to take advantage of new and emerging research methods and designs.

We suggest four general approaches that would benefit early development research in intellectual disability. First, countries around the world have been investing more in administrative data across multiple domains of public policy, but including children and families.

Early development research on children with intellectual disability would benefit from international standards for data to gather about young children that would allow those with an intellectual disability to be identified with some confidence. Second, many countries also invest in large population-based studies of children and families. It is possible in some of these to identify children who are likely to have an intellectual disability and related developmental conditions and thus to uniquely consider matters of child development at a population level cf.

Totsika and Hastings, When making these national investments, it would not take much additional effort for the designers of population surveys to include methods that would allow children with intellectual disability to be more easily identified. Exclusion from population level surveys is in any case likely inconsistent with the rights of people with ID to be included in matters related to their health and well-being United Nations, Third, although the consent and data sharing issues will need to be considered very carefully, families of young children with intellectual disability across collaborating international research groups could be approached to join national or international research registers cf.

In the current paper, and science mapping study, we have argued for the importance of basing early interventions for children with intellectual disability on the foundations of high quality developmental research. Mapping the use of early development research in intellectual disability, we found only moderate evidence of links to research on intervention and arguably a concerning disconnection.

However, our analysis gives only a partial picture of the state of early developmental science in intellectual disability. A related systematic review and synthesis of early intervention research in intellectual disability would be informative in this regard. Given that we have argued that developmental processes may be relatively universal although likely at a slower pace in intellectual disability, does it matter if there is both a lack of early development research in intellectual disability and a potential disconnection with early intervention science?

We contend that the answer to this question is: Yes, it does matter. In particular, it is clear that the social and especially the family environment both partially determines and also interacts with children's development. This means that the development of children with intellectual disability is likely shaped by different environmental influences than for other children at the same developmental age.

In addition, families' experiences are different: their child with intellectual disability may engage in challenging behaviors that are not only uniquely stressful, but lead to considerable public stigma for families.

Lacking direct research evidence about the development of children with intellectual disability, any intervention not informed by such research may have unexpected, and even damaging, outcomes. Without underpinning developmental research, it is also difficult to understand how or why early interventions are working successfully.

This will be especially limiting at the stage where evidence-based early intervention strategies need to be rolled out widely in practice. Successful implementation will, in part, be determined by strategies to maintain the changes in developmental and family processes that are targeted by the intervention. While the Warnock report in did not focus on the critical need to understand developmental mechanisms in children with intellectual disability, the findings of the current study suggest continuing relevance of high quality longitudinal work.

The bibliographic datasets generated and analyzed for this study can be fully obtained using the search commands in the Appendix A , using proprietary databases of Thomson Reuters Web of Science and Elsevier Scopus. CS and RH contributed conception and plan for the review. CS collected bibliographic data and performed the bibliometric analyses.

CS and RH wrote the first draft of the manuscript. All authors contributed to manuscript revision, read and approved the submitted version. The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Alsem, M. Co-creation of a digital tool for the empowerment of parents of children with physical disabilities. Baranek, G. Longitudinal assessment of stability of sensory features in children with autism spectrum disorder or other developmental disabilities. Autism Res. Bertelli, M. Health Intellect. Cianfaglione, R.

Google Scholar. Contopoulos-Ioannidis, D. Life cycle of translational research for medical interventions. Science , — Craig, P. Developing and evaluating complex interventions: the new Medical Research Council guidance. Department for Education and Science London: HMSO.

Emerson, E. Mental health of children and adolescents with intellectual disabilities in Britain. Obesity in British children with and without intellectual disability: cohort study. BMC Public Health. Grove, R. Special interests and subjective wellbeing in autistic adults. Hodapp, R. Cambridge: CUP. Kaufman, L. The genetic basis of non-syndromic intellectual disability: a review.

Kunseler, F. Vrije Universiteit Amsterdam. Liberati, A. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Med. Maulik, P. Prevalence of intellectual disability: a meta-analysis of population-based studies. Oliver, K. The dark side of coproduction: do the costs outweigh the benefits for health research? Health Res. Policy Syst. Salas, E. The science of teamwork: progress, reflections, and the road ahead.

Salvador-Carulla, L. World Psychiatry 10, — Thornicroft, G. The place of implementation science in the translational medicine continuum. Totsika, V. How can population cohort studies contribute to our understanding of low prevalence clinical disorders? The case of autism spectrum disorders. Neuropsychiatry 2, 87— Behavior problems at 5 years of age and maternal mental health in autism and intellectual disability. Child Psychol. Early Moments Matter for Every Child.

United Nations PubMed Abstract. Van Eck, N. VosViewer Manual. Leiden: Leiden University. VosViewer Version 1. Waltman, L. A unified approach to mapping and clustering of bibliometric networks. Webster, R. A blueprint for evidence-based practice? Assessing the Warnock Inquiry's proposals for research and development in special education 40 years on. Geneva: WHO. Early Childhood Development and Disability: Discussion paper.

Keywords: intellectual disability, longitudinal research, early development, early intervention, systematic review, science mapping. The use, distribution or reproduction in other forums is permitted, provided the original author s and the copyright owner s are credited and that the original publication in this journal is cited, in accordance with accepted academic practice.

No use, distribution or reproduction is permitted which does not comply with these terms. Stanford 4 and Richard P. Hastings 4,5. Methods The review questions were addressed by performing literature retrieval Liberati et al.

Retrieval of Longitudinal Studies of Early Development Eligibility Criteria Publications were selected if these: 1 used as inclusion criterion intellectual disability or a clinical condition with intellectual disability as a part of the phenotype as focal sample, not as comparison sample; per the goals of this review , 2 reported studies where the aim was to quantify non-experimental change in dependent variables or associations between independent and dependent variables on at least two time points i.

Retrieval and Eligibility Assessment Query strings Appendix A were entered in the bibliographic databases of Scopus and Web of Science, which provide ongoing coverage of the large majority of international peer reviewed journals in the field of special education and rehabilitation.

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