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1.
Milbank Q ; 99(1): 62-90, 2021 03.
Article in English | MEDLINE | ID: mdl-33463772

ABSTRACT

Policy Points That child and adolescent mental health services needs are frequently unmet has been known for many decades, yet few systemic solutions have been sought and fewer have been implemented at scale. Key among the barriers to improving child and adolescent mental health services has been the lack of well-organized primary mental health care. Such care is a mutual but uncoordinated responsibility of multiple disciplines and agencies. Achieving consensus on the essential structures and processes of mental health services is a feasible first step toward creating an organized system.


Subject(s)
Child Health Services/organization & administration , Mental Health Services/organization & administration , Adolescent , Child , Child, Preschool , Disabled Children/legislation & jurisprudence , Health Services Accessibility , History, 20th Century , Hospitalization/trends , Humans , Interdisciplinary Communication , Mental Disorders/epidemiology , Mental Health Services/history , Mental Health Services/legislation & jurisprudence , United States/epidemiology
2.
Pediatrics ; 146(Suppl 1): S3-S8, 2020 08.
Article in English | MEDLINE | ID: mdl-32737225

ABSTRACT

One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child's short life had a profound impact on the author's career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today. It also contributed to the growth of the modern bioethics movement and scholarship focused on pediatric bioethics issues.


Subject(s)
Bioethical Issues , Clinical Decision-Making/ethics , Down Syndrome/therapy , Pediatrics/ethics , Withholding Treatment/ethics , Advisory Committees/ethics , Bioethical Issues/history , Bioethical Issues/legislation & jurisprudence , Disabled Children/legislation & jurisprudence , Down Syndrome/history , Esophageal Atresia/history , Esophageal Atresia/therapy , Foundations , History, 20th Century , Humans , Infant, Newborn , Parental Consent/ethics , Parental Consent/legislation & jurisprudence , Parents , Pediatrics/legislation & jurisprudence , Terminal Care/ethics , Withholding Treatment/legislation & jurisprudence
3.
Med Law Rev ; 28(3): 595-604, 2020 Aug 01.
Article in English | MEDLINE | ID: mdl-32337551

ABSTRACT

How (if at all) can the right to liberty of a child under Article 5 European Convention on Human Rights ('ECHR') be balanced against the rights of parents, enshrined both at common law and under Article 8 ECHR? Is there a limit to the extent to which parents can themselves, or via others, seek to impose restrictions upon their disabled child's liberty so as to secure their child's interests? This case considers the answers to these questions given by and the implications of the decision of the Supreme Court in September 2019 in Re D (A Child) [2019] UKSC 42.


Subject(s)
Disabled Children/legislation & jurisprudence , Freedom , Mental Competency/legislation & jurisprudence , Parent-Child Relations/legislation & jurisprudence , Parental Consent/legislation & jurisprudence , Adolescent , Human Rights , Humans , Jurisprudence , Mental Disorders/rehabilitation , United Kingdom
4.
Scand J Occup Ther ; 27(5): 309-322, 2020 Jul.
Article in English | MEDLINE | ID: mdl-30856035

ABSTRACT

Background: A literature review in 2001 found that children with disabilities were frequently transported in unsafe conditions and further research was required to investigate the gap between regulations, standards and actual transportation practices.Objectives: To synthesize available evidence on the transportation of children with disabilities in road vehicles.Methods: Four databases were systematically searched: CINAHL; Medline; National Transport Library Catalogue (Sweden); and Transport Research International Documentation.Results: Nineteen studies ranging in methodological quality from poor to excellent were included in the review. The findings are presented under the following six major themes: child safety restraints, wheelchairs, vehicles, travel habits, parental and professional knowledge. The results are mapped onto two groups of children, those with behavioral problems and those with physical disabilities.Conclusion: The literature reflected little change across the six major themes since the previous review. Children with disabilities continue to be inappropriately restrained in vehicles, constituting an ongoing road safety problem. There is a strong need to increase parent knowledge, upskill health professionals and provide families with financial assistance to enable them to ensure the safe transportation of children with disabilities to minimize the risk of injury and fatalities on the road, and enhance their participation in the community.


Subject(s)
Child Restraint Systems/standards , Disabled Children/legislation & jurisprudence , Guidelines as Topic , Transportation/legislation & jurisprudence , Transportation/standards , Travel , Wheelchairs/standards , Adolescent , Child , Child, Preschool , Female , Humans , Infant , Infant, Newborn , Male , Sweden
6.
Fordham Law Rev ; 87(2): 583-628, 2018 Nov.
Article in English | MEDLINE | ID: mdl-30398320

ABSTRACT

"Wrongful birth" is a controversial medical malpractice claim raised by the mother of a child born with a disability against a medical professional whose failure to provide adequate prenatal information denied her the chance to abort. Plaintiff-mothers are required to testify that, but for the defendant's negligence, they would have terminated their pregnancy. Accordingly, alongside pro-life activists, disability rights advocates have opposed "wrongful birth" claims for stigmatizing and discriminating against people with disabilities by framing their very existence as a harm. Despite plaintiff-mothers' need for caretaking resources, scholars have recommended solutions ranging from the wholesale elimination of the wrongful birth claim to the curtailment of damages. To the extent scholars and the media have acknowledged mothers in the wrongful birth discourse at all, often it has been to blame and shame them for allegedly rejecting their children. They have paid little attention to the ways wrongful birth jurisprudence forces mothers to disavow their children in court, and thereby to forfeit the "good mother" ideal, in exchange for the possibility of securing necessary resources for their children. Commentators who question plaintiff-mothers' maternal devotion exacerbate the psychological toll the law already imposes. This Article shifts the blame from mothers to the legal system. While wrongful birth proceedings portray mothers' feelings about their children as categorically negative, real life accounts and social science findings reveal the true paradoxical experiences of all mothers, including plaintiff-mothers raising children with disabilities. To acknowledge this complex reality and mitigate the emotional strain of bringing a wrongful birth claim, this Article proposes several legal reforms: (1) broadening the analysis of emotional distress to reflect and legitimize mothers' paradoxical feelings about their children; (2) reframing the harm to mothers as loss of reproductive choice rather than as the birth of a flawed child and, accordingly, expanding available economic damages to include plaintiff-mothers' unexpected childcare responsibilities; and (3) educating plaintiffs' attorneys to empathize with the emotional aspects of mothers' litigation experiences and to counsel mothers accordingly. Today's approach to "wrongful birth" claims, which both stigmatizes disability and strains caretakers, demands urgent reform.


Subject(s)
Disabled Children/legislation & jurisprudence , Disabled Children/psychology , Mothers/legislation & jurisprudence , Mothers/psychology , Parenting/psychology , Wrongful Life , Abortion, Legal , Child , Child, Preschool , Female , Humans , Infant , Infant, Newborn , Prenatal Diagnosis , Stress, Psychological , United States
7.
J Sch Health ; 88(10): 776-784, 2018 10.
Article in English | MEDLINE | ID: mdl-30203483

ABSTRACT

BACKGROUND: Asthma has no known cure, and though manageable, it disrupts the everyday lives of over 6 million US children. Because children spend more than half of their waking hours in school, students must be able to carry and administer their inhaler at school to manage their asthma. METHODS: This policy paper is a comprehensive review of all 50 states and the District of Columbia's laws and policies for the self-carry and administration of quick-relief asthma inhalers among children in prekindergarten through 12th grade. RESULTS: All states permit students to carry and administer their inhalers at school, although each state differs in their development and implementation of policies for asthma self-management at school. This review examines how states regulate self-carry policies by looking at policy development, regulated school systems, relevant stakeholders, required medical records, and school liability. CONCLUSIONS: Each state's laws have nuances that create gray areas, increasing the potential of misinterpreted or incorrectly implemented policies for asthma self-management at school. As a result, children may not have immediate access to their inhaler for symptom management or in an emergency. State policymakers should reform current laws to remove barriers for students to carry and use inhalers at school.


Subject(s)
Asthma/prevention & control , Asthma/therapy , Disabled Children/legislation & jurisprudence , Patient Rights/legislation & jurisprudence , School Health Services/legislation & jurisprudence , Students/legislation & jurisprudence , Child , Child Welfare/legislation & jurisprudence , Health Policy , Humans , Mainstreaming, Education/legislation & jurisprudence , Nebulizers and Vaporizers/statistics & numerical data , School Health Services/statistics & numerical data , Self Administration/methods , United States
8.
Am Univ Law Rev ; 67(6): 1797-909, 2018.
Article in English | MEDLINE | ID: mdl-30203944

ABSTRACT

This Article addresses the impact of school voucher programs on students with disabilities. We show that for children with disabilities, the price of admission into so-called "school choice" programs is so high that it is effectively no real choice at all. School voucher programs require students with disabilities to sign away their robust federal rights and protections in the public school system. Under the Individuals with Disabilities Education Act (IDEA)--the preeminent legislative safeguard for students with disabilities--these rights include the right to a "free and appropriate public education" delivered through an "individualized education plan." By giving up these protections, children with disabilities are left at the mercy of private schools that have no legal obligation to provide them with an appropriate education, and, in the vast majority of cases, are not legally prohibited from discriminating against them on the basis of their disability. We argue that school voucher programs--including a proposed federal voucher program--put the education of students with disabilities back decades, and likely constitute a violation of the Equal Protection Clause of the U.S. Constitution.


Subject(s)
Disabled Children/education , Disabled Children/legislation & jurisprudence , Education, Special/legislation & jurisprudence , Education/legislation & jurisprudence , Schools/legislation & jurisprudence , Adolescent , Child , Child, Preschool , Choice Behavior , Civil Rights/education , Civil Rights/legislation & jurisprudence , Education/economics , Education, Special/history , History, 20th Century , Humans , Indiana , Prejudice/legislation & jurisprudence , Private Sector , Public Sector , Supreme Court Decisions , United States
9.
PLoS One ; 13(8): e0202336, 2018.
Article in English | MEDLINE | ID: mdl-30161146

ABSTRACT

INTRODUCTION: Autistic people may have different educational needs that need to be met to allow them to develop their full potential. Education and disability policies remain within the competence of EU Member States, with current educational standards and provisions for autistic people implemented locally. This scoping review aims to map EU and national special education policies with the goal of scoping the level of fulfilment of the right to education of autistic people. METHODS: Four EU countries (United Kingdom, France, Poland and Spain) were included in this scoping review study. Governmental policies in the field of education, special education needs and disability law were included. Path dependency framework was used for data analysis; a net of inter-dependencies between international, EU and national policies was created. RESULTS AND DISCUSSION: Each country created policies where the right to free education without discrimination is provided. Poland does not have an autism specific strategy, whereas the United Kingdom, France and Spain have policies specifically designed for autistic individuals. Within the United Kingdom, all countries created different autism plans, nevertheless all aim to reach the same goal-inclusive education for autistic children that leads to the development of their full potential. CONCLUSION: Policy-making across Europe in the field of education has been changing through the years in favour of autistic people. Today their rights are noticed and considered, but there is still room for improvement. Results showed that approaches and policies vastly differ between countries, more Member States should be analysed in a similar manner to gain a broader and clearer view with a special focus on disability rights in Central and Eastern Europe.


Subject(s)
Autism Spectrum Disorder , Education/legislation & jurisprudence , Policy , Child , Cross-Cultural Comparison , Disabled Children/legislation & jurisprudence , France , Humans , Poland , Spain , United Kingdom
10.
Am J Intellect Dev Disabil ; 123(4): 305-314, 2018 07.
Article in English | MEDLINE | ID: mdl-29949423

ABSTRACT

In 1975, federal law mandated that children with disabilities be educated in their least restrictive environment, or alongside peers without disabilities in general education classrooms to the maximum extent appropriate. More than 40 years later, I investigated how national trends in educational placement have changed over time for students with intellectual disability. Specifically, I examined the degree placements have trended toward less restrictive environments. I found historical trends of incremental progress toward less restrictive settings, but no evidence of such progress in recent years. Furthermore, most students were educated predominantly in segregated settings every year. I discuss how these findings relate to previous studies, as well as implications for individualized education program teams and advocates for educational inclusion.


Subject(s)
Disabled Children/rehabilitation , Education, Special/trends , Intellectual Disability/rehabilitation , Persons with Mental Disabilities/rehabilitation , Schools/trends , Adolescent , Adult , Child , Disabled Children/legislation & jurisprudence , Disabled Children/statistics & numerical data , Education, Special/statistics & numerical data , Female , Humans , Male , Persons with Mental Disabilities/legislation & jurisprudence , Persons with Mental Disabilities/statistics & numerical data , Schools/legislation & jurisprudence , Schools/statistics & numerical data , United States , Young Adult
11.
Pediatrics ; 141(5)2018 05.
Article in English | MEDLINE | ID: mdl-29712763

ABSTRACT

School systems are responsible for ensuring that children with special needs are safely transported on all forms of federally approved transportation provided by the school system. A plan to provide the most current and proper support to children with special transportation needs should be developed by the Individualized Education Program team, including the parent, school transportation director, and school nurse, in conjunction with physician orders and recommendations. With this statement, we provide current guidance for the protection of child passengers with specific health care needs. Guidance that applies to general school transportation should be followed, inclusive of staff training, provision of nurses or aides if needed, and establishment of a written emergency evacuation plan as well as a comprehensive infection control program. Researchers provide the basis for recommendations concerning occupant securement for children in wheelchairs and children with other special needs who are transported on a school bus. Pediatricians can help their patients by being aware of guidance for restraint systems for children with special needs and by remaining informed of new resources. Pediatricians can also play an important role at the state and local level in the development of school bus specifications.


Subject(s)
Disabled Children/legislation & jurisprudence , Equipment Safety/standards , Motor Vehicles/standards , Transportation , Child , Child Restraint Systems/standards , Humans , Motor Vehicles/legislation & jurisprudence , United States , Wheelchairs/standards
13.
Assist Technol ; 30(4): 209-217, 2018.
Article in English | MEDLINE | ID: mdl-28581898

ABSTRACT

This study explores broad issues associated with assistive technology (AT) service provision in rural school settings. The study was designed to explore the beliefs of practitioners working in rural schools about their role in AT service provision. This article includes an extensive review of the literature and findings from a naturalistic study of AT service provision experience in rural school settings. The study portion of this article involved completion of an open-ended questionnaire followed by semi-structured ethnographic interviews. The participants completing the questionnaires were 22 occupational therapy practitioners and seven individuals from a variety of professional backgrounds recognized as leaders in AT in the state of West Virginia. Data were collected over a 3-year period. Themes identified in the data emphasized concerns about the unclear role of potential AT providers resulting in the use of AT as a last resort, the lack of inclusion of AT in the core curriculum, and the limited collaboration and in-service education opportunities recognized by practitioners. This qualitative study is not generalizable. Findings can be viewed within the context of other research to help enrich the reader's understanding of AT service delivery.


Subject(s)
Disabled Children , Occupational Therapy , Rural Population , Schools , Self-Help Devices , Child , Disabled Children/education , Disabled Children/legislation & jurisprudence , Humans , Occupational Therapy/legislation & jurisprudence , Occupational Therapy/methods , Qualitative Research , West Virginia/ethnology
14.
Sch Psychol Q ; 33(1): 75-82, 2018 03.
Article in English | MEDLINE | ID: mdl-28541080

ABSTRACT

Across the last century, the condition known as intellectual disability (ID) has been labeled by assorted terms, its key features have varied, and recommendations for its identification have been divided. In light of recent changes to the diagnostic criteria for ID and to federal legislation, this study was designed to compile and summarize information about the state special education criteria for this condition and its associated assessment process, as they guide school-based and associated practices. Authors independently double-coded components of all ID regulations and guidelines from the 50 United States and the District of Columbia in pairs, which was then checked and corrected for inconsistencies. A total of 10% of states provided only the federal definition of ID. Intellectual disability was the most common term used across states, but it was used by only 63% of them. To meet the intellectual deficit criterion, 37% of states referenced a fixed IQ cutoff, and 49% referred to a flexible IQ cutoff. In contrast, most states did not refer to what score types or criteria should be referenced when identifying adaptive behavior deficits. The influence of the recently updated diagnostic criteria for ID and federal legislation was evident, as several patterns of changes were apparent since the last studies of this type. The assessment in intellectual functioning was more well defined than the assessment of adaptive behavior. Health-related features associated with ID were not commonly referenced. These results can inform school psychology practice, training, and related research. (PsycINFO Database Record


Subject(s)
Disabled Children , Education, Special , Intellectual Disability/diagnosis , Intelligence , Persons with Mental Disabilities , Schools , Adolescent , Child , Disabled Children/legislation & jurisprudence , Education, Special/legislation & jurisprudence , Humans , Persons with Mental Disabilities/legislation & jurisprudence , Schools/legislation & jurisprudence , United States
15.
SMU Law Rev ; 71(4): 1181-1207, 2018.
Article in English | MEDLINE | ID: mdl-30648838

ABSTRACT

This article analyzes the current state of the special education system in Texas following the 85th Legislative Session, focusing on the practical and legal implications of the limitation imposed by the Texas Education Agency in 2004 before analyzing Senate Bill 160, which requires Texas to remove the limitation on special education services, and its future impact on special education in Texas. Additionally, this article addresses Senate Bill 927, which outlined a plan to ensure that students who were previously denied services receive an adequate evaluation, why the legislation failed, and potential remedies for students who have been negatively impacted by the limitation over the years. Following this discussion, policy recommendations on how to further improve the current state of special education in Texas are proposed.


Subject(s)
Disabled Children/education , Disabled Children/legislation & jurisprudence , Education, Special/legislation & jurisprudence , Child , Education, Special/economics , Education, Special/history , History, 20th Century , Humans , Texas , United States
16.
Hastings Cent Rep ; 47(5): 15-16, 2017 Sep.
Article in English | MEDLINE | ID: mdl-28940349

ABSTRACT

The parents of Charlie Gard, who was born August 4, 2016, with an exceedingly rare and incurable disease called mitochondrial DNA depletion syndrome, fought a prolonged and heated legal battle to allow him access to experimental treatment that they hoped would prolong his life and to prevent his doctors from withdrawing life-sustaining care. Charlie's clinicians at the Great Ormond Street Hospital in London believed that the brain damage Charlie had suffered as a result of frequent epileptic seizures, along with many other severe disabilities, would render any innovative therapy futile, and they disagreed with his parents' wishes to use an experimental therapy. They felt it in Charlie's best interest that he be allowed to die. A battle ensued among Charlie's parents, his doctors, and a guardian who had been appointed to represent him that drew the attention of politicians and prominent persons from all over the world. The case was much in the news over the past year, but it has also been frequently misunderstood.


Subject(s)
Decision Making , Disabled Children/legislation & jurisprudence , Parents/psychology , Proxy/legislation & jurisprudence , Humans , Infant, Newborn , Physician's Role , Research Subjects/psychology
18.
J Dev Behav Pediatr ; 38(7): 510-520, 2017 Sep.
Article in English | MEDLINE | ID: mdl-28691957

ABSTRACT

OBJECTIVE: Early intervention (EI) programs under Part C of the Individuals with Disabilities Education Act serve a developmentally heterogeneous population of infants and toddlers with or at risk of developmental delays or disabilities. The aim of this study was to identify empirically distinct subgroups of children in EI so as to inform early prognosis and service planning. METHODS: We applied mixture modeling to developmental assessment data from 1513 children who enrolled in a large, urban EI program between 2009 and 2013. The observed variables were children's EI-entry developmental quotients (DQs) in 5 domains (communication, cognitive, motor, adaptive, and personal-social) as assessed by the Battelle Developmental Inventory, Second Edition. RESULTS: A 4-class model showed the best fit to the data, revealing subgroups with distinct developmental profiles. Children in the first subgroup showed a severe delay in communication with less severe delays in the other domains. Children in the second subgroup likewise showed a severe delay in communication, but with comparably severe delays in the cognitive and motor domains. Profiles for the third and fourth subgroups showed the same overall patterns as those for the first and second subgroups, respectively, but to a less severe degree. Developmental trajectories differed by subgroup. CONCLUSION: Consideration of subgroups based on children's developmental assessment scores provides insight into underlying commonalities among children with different presenting diagnoses on entry into EI. The subgroups also have clinical relevance in terms of both practitioners' and parents' understanding of children's likely service needs and developmental trajectories.


Subject(s)
Developmental Disabilities , Early Medical Intervention/statistics & numerical data , Child, Preschool , Developmental Disabilities/classification , Developmental Disabilities/diagnosis , Developmental Disabilities/physiopathology , Developmental Disabilities/therapy , Disabled Children/legislation & jurisprudence , Florida , Humans , Infant , Models, Statistical
19.
Fed Regist ; 82(125): 29755-61, 2017 Jun 30.
Article in English | MEDLINE | ID: mdl-28700191

ABSTRACT

The Secretary of Education (Secretary) amends the regulations implementing Parts B and C of the Individuals with Disabilities Education Act (IDEA). These conforming changes are needed to implement statutory amendments made to the IDEA by the Every Student Succeeds Act (ESSA), enacted on December 10, 2015. These regulations remove and revise IDEA definitions based on changes made to the definitions in the Elementary and Secondary Education Act of 1965 (ESEA), as amended by the ESSA, and also update several State eligibility requirements to reflect amendments to the IDEA made by the ESSA. They also update relevant cross-references in the IDEA regulations to sections of the ESEA to reflect changes made by the ESSA. These regulations also include several technical corrections to previously published IDEA Part B regulations.


Subject(s)
Disabled Children/education , Disabled Children/legislation & jurisprudence , Early Intervention, Educational/legislation & jurisprudence , Financing, Government/economics , Financing, Government/legislation & jurisprudence , Child, Preschool , Government Programs/economics , Government Programs/legislation & jurisprudence , Humans , Infant , State Government , United States
20.
Br Dent J ; 222(9): 655-657, 2017 May 12.
Article in English | MEDLINE | ID: mdl-28496215

ABSTRACT

Following the judgement in Montgomery in March 2015 which brought the law of consent up to speed with what the GDC 's ethical and professional guidance expected registrants to do, this article looks at how other cases have interpreted Montgomery subsequently and the impact and implications for dentists. The importance of excellent communication is emphasised in order to provide sufficient and relevant information to the particular patient you have sitting in your dental chair.


Subject(s)
Dental Care/legislation & jurisprudence , Informed Consent/legislation & jurisprudence , Child , Chromosome Aberrations/embryology , Dental Care/ethics , Disabled Children/legislation & jurisprudence , Female , Humans , Personal Autonomy , Pregnancy , Prenatal Diagnosis , State Medicine/ethics , State Medicine/legislation & jurisprudence , United Kingdom
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