According to the literature, youth experiencing with either homelessness or disabilities face severe barriers throughout their life-time which would negatively impact their physical development, psychological development, and mental health, but also contribute to a vicious circle of homeless and poverty. However, the intersection between homeless youth with learning, developmental and/or intellectual disabilities (LD/DD/ID) in the school system has rarely been explored. This population is invisible to the school system which indicates an urgency in identifying and understanding their experience at school. This research, as a part of the Partnering for Change initiative, aimed to provide some insight into the socially constructed problems which cause barriers for this invisible population. In this study, an interpretive lens and a critical approach were adopted as a guide to data analysis and as a means to identify constructed barriers based on the interviews with homeless youth with LD/DD/ID in Hamilton, Ontario, Canada. The data on homeless youth with LD/DD/ID was analysed for impacts on relationships, academic performance, and the effects of invisibility on multiple levels of their school life. The data also revealed the way schools respond to disabilities and homelessness. In the discussion I investigate the way policy, funding structure and implementation of support are significantly affected by the neoliberal context with its emphasis on market-driven pedagogy and individuals conceptualized as agents of self- capitalization. This thesis argues for a better alternative, as referenced from Finland. The Finnish approach emphasizes human rights, equality, and inclusion, and aims to demonstrate how changes in fundamental beliefs and values can construct a barrier-free and supportive education system for everyone. / Thesis / Master of Social Work (MSW)

Research on risk perception, disaster preparedness, and hurricane risk communication among Hispanic/Latino individuals with disabilities is growing. However, there is limited understanding of how cultural factors influence risk perceptions, hurricane preparedness, and how emergency managers communicate hurricane risks to Hispanic/Latino individuals with developmental disabilities in Central Florida. This qualitative case study aims to fill this gap by exploring the cultural influence on risk perception and hurricane preparedness, as well as how local emergency managers communicate risks associated with hurricanes to Hispanic/Latino individuals with developmental disabilities. The study seeks to understand how culture can shape this population's risk perception and natural disaster preparedness for disasters like hurricanes. The researcher uses an integrative theoretical framework that combines the Cultural Theory of Risk, Protective Motivation Theory, and Familism to guide the study. In-depth individual and group interviews were conducted with a diverse sample of Hispanic/Latino families living with individuals with developmental disabilities. Interviewees were selected based on location, age, and cultural background. Additionally, the researcher conducted a desk review of hurricane communication from each Central Florida county, followed by individual interviews with the emergency managers from Central Florida counties. Data from Hispanic/Latino families living with individuals with developmental disabilities were analyzed using inductive and deductive methods to identify themes related to the effect of culture on risk perception and natural disaster preparedness, specifically for hurricanes. The study revealed that culture can influence risk perception and natural disaster preparedness among Hispanic/Latino individuals living with developmental disabilities in many ways. Moreover, data from the desk review and interviews with emergency managers indicated a preference for relying heavily on the social networks of Hispanic/Latino individuals with developmental disabilities to communicate hurricane risks. Keywords: Risk perception, cultural influence, developmental disabilities, hurricane preparedness, Hispanic/Latino, risk communication.

BACKGROUND: Many women of reproductive age are employed in industries involving exposure to organic solvents. Animal toxicological studies and human case reports demonstrate that exposure to organic solvents can cause neuropsychological deficits in exposed offspring; however, there is limited data from prospective controlled human studies. OBJECTIVE: To compare neuropsychological functioning between children whose mothers were occupationally exposed to organic solvents during pregnancy with a non-exposed matched comparison group. METHODS: Participants were 48 women who had previously contacted the Motherisk Program in Toronto, Canada during pregnancy regarding occupational exposure to organic solvents and a matched comparison group of women with no known exposure to teratogens during pregnancy. Children (18 months to 8 years 11 months at time of study) were compared in areas of cognitive, language, motor, and behavioral functioning. RESULTS: Children whose mothers were exposed to organic solvents during pregnancy displayed a lower level of functioning when compared with their matched peers in areas of cognitive, language, motor, and behavioral domains. Although the scores on measures of behavioral functioning were not in the clinical range, the mothers of exposed children reported more challenging behavioral problems. In order to determine whether exposure predicted neuropsychological outcomes above and beyond maternal intellectual functioning, hierarchical regressions were run with maternal IQ and maternal education at Step 1and exposure status added at Step 2. In utero exposure to organic solvents predicted lower sores on global measures of Verbal IQ, receptive and expressive language scales above and beyond maternal intellectual functioning. Factors associated with higher levels of exposure (detecting odor, longer duration and total number of toxicity symptoms) was associated with poorer outcome on behavioral and motor functioning tests. CONCLUSION: Despite the fact that the exposed mothers experienced minimal symptoms of toxicity, detrimental effects were still evident in their offspring. Current safety standards for exposure were designed for adults and need to be reevaluated. Further studies addressing exposure to specific organic solvents, dose, and gestational timing of exposure are warranted.

BACKGROUND: Many women of reproductive age are employed in industries involving exposure to organic solvents. Animal toxicological studies and human case reports demonstrate that exposure to organic solvents can cause neuropsychological deficits in exposed offspring; however, there is limited data from prospective controlled human studies. OBJECTIVE: To compare neuropsychological functioning between children whose mothers were occupationally exposed to organic solvents during pregnancy with a non-exposed matched comparison group. METHODS: Participants were 48 women who had previously contacted the Motherisk Program in Toronto, Canada during pregnancy regarding occupational exposure to organic solvents and a matched comparison group of women with no known exposure to teratogens during pregnancy. Children (18 months to 8 years 11 months at time of study) were compared in areas of cognitive, language, motor, and behavioral functioning. RESULTS: Children whose mothers were exposed to organic solvents during pregnancy displayed a lower level of functioning when compared with their matched peers in areas of cognitive, language, motor, and behavioral domains. Although the scores on measures of behavioral functioning were not in the clinical range, the mothers of exposed children reported more challenging behavioral problems. In order to determine whether exposure predicted neuropsychological outcomes above and beyond maternal intellectual functioning, hierarchical regressions were run with maternal IQ and maternal education at Step 1and exposure status added at Step 2. In utero exposure to organic solvents predicted lower sores on global measures of Verbal IQ, receptive and expressive language scales above and beyond maternal intellectual functioning. Factors associated with higher levels of exposure (detecting odor, longer duration and total number of toxicity symptoms) was associated with poorer outcome on behavioral and motor functioning tests. CONCLUSION: Despite the fact that the exposed mothers experienced minimal symptoms of toxicity, detrimental effects were still evident in their offspring. Current safety standards for exposure were designed for adults and need to be reevaluated. Further studies addressing exposure to specific organic solvents, dose, and gestational timing of exposure are warranted.

Several empirical studies have suggested that self-monitoring is an effective strategy to increase appropriate behavior in children and adults with developmental disabilities. Results of a comprehensive review of self-monitoring research with people who have developmental disabilities revealed that 71% of the participants were trained by researchers. However, researchers are not typical intervention agents. To ensure that people who are typically in the participant’s environment (e.g., teachers, parents, caregivers) can effectively teach people with developmental disabilities to self-monitor and that this in turn will change the participant’s behavior, it is important that research examine the effectiveness of self-monitoring when the training is provided by typical intervention agents. Thus, the purpose of this dissertation study was to investigate the effects of a self-monitoring intervention package on both teacher and student behavior in the classroom. The self-monitoring intervention package consisted of training teachers to use self-monitoring, providing feedback on the self-monitoring intervention developed by the teacher, providing feedback to teachers while training the student to self-monitor, and providing feedback to teachers while they implemented the self-monitoring intervention in the classroom. During intervention, the researchers provided feedback to teachers to ensure that teachers were correctly instructing the students to self-monitor. Teachers then implemented the self-monitoring intervention without researcher feedback (maintenance). Teachers required very little to no feedback after the self-monitoring training, feedback on the self-monitoring intervention they developed, and student self-monitoring training. The researcher provided immediate feedback during the first session when the self-monitoring intervention was implemented in the classroom to ensure the teachers implemented the self-monitoring intervention with fidelity. Rate of inappropriate sitting decreased for all students after the self-monitoring intervention was introduced, and the percentage of non-overlapping data metric values indicated that the self-monitoring interventions were highly effective for three participants and effective for one participant. Some teachers and some students generalized the use of self-monitoring interventions to other activities, students, and target behaviors. Social validity measures indicate that self-monitoring interventions for young children with developmental disabilities are socially important. / text

This study compared perceived levels of parenting stress between mothers and fathers of children with Attention-Deficit Hyperactivity Disorder (ADHD), children with developmental disabilities, and normally developing children. The relationship of certain demographic variables, such as Socio-economic Status (SES), number of children, years married, parent age, and child age, as well as social support with parenting stress was also examined for mothers and fathers of these three groups. Identification of factors related to parenting stress in fathers was of particular importance for this study, as fathers are often an underrepresented group within parenting research. Identifying effective methods for predicting high levels of parenting stress is important, as stress has been linked to psychological well-being, potential for abuse, and a greater likelihood of poor adjustment for both parent and child. Results from the present study comparing reported stress levels between groups of parents were supportive of previous studies indicating that parents of children with ADHD and developmentally disabilities experience significantly greater parenting stress, specifically with respect to child characteristics. Significant gender differences were also found between mothers and fathers in terms of parent characteristics related to stress. Fathers reported greater stress in the areas of attachment, while mothers reported more parent role restrictions. Additionally, significant negative relationships were found between parents' perceived helpfulness of informal social support and parenting stress scores in both mothers and fathers, affirming positive effects of social support on stress. Helpfulness of informal social support was also significantly predictive of parenting stress in both mothers and fathers across both the child and parent domains of the PSI, although, it had more predictive power with regard to parent related contributors to parenting stress. Family demographic factors, including age of the child and SES demonstrated some predictive power of parenting stress in mothers. Mothers with younger children and lower SES were more likely to report greater parenting stress. Implications of these results and future directions for research are also discussed.

the author did not submit an abstract

Self-directed supports, as a method of service delivery, have grown from small pilot programs in a handful of states to at least one program in every state. For individuals with intellectual and developmental disabilities (IDD), self-direction presents unique opportunities to engage in self-determined behavior and shape the services upon which they rely. Although the evidence base for self-direction is relatively robust, there is a significant lack of information on how implementation of self-direction is faring on the national level. The purpose of this study is to understand how the political and economic factors within and across states have impacted the implementation of a self-directed service delivery system.

Introdução. O desenvolvimento socioemocional da criança pequena é condicionado por fatores de exposição relacionados ao contexto, cuja presença define a vulnerabilidade da criança para as disfunções socioemocionais. A síntese dos fatores de exposição em marcadores qualitativos de vulnerabilidade favorece a construção de tecnologias de captação de situações de vulnerabilidade e proposição de intervenções que promovam o desenvolvimento socioemocional. Objetivos: Construir marcadores de vulnerabilidade de lactentes para disfunções em seu desenvolvimento socioemocional e realizar sua validação de conteúdo. Método: Pesquisa metodológica de abordagem qualitativa e quantitativa, que teve como referencial teórico o Modelo Bioecológico de Desenvolvimento Humano, e operacionalizada por meio de duas etapas de pesquisa: extração e síntese dos dados, e validação de conteúdo. A identificação dos fatores de exposição ocorreu mediante revisão integrativa, realizada entre abril e agosto de 2016, com critérios definidos de inclusão e exclusão dos estudos, e estratégias sistemáticas de busca. Os dados identificados foram extraídos e submetidos à técnica de análise temática categorial. Os fatores de exposição foram agrupados inicialmente ,conforme a sua semelhança semântica, e foi analisada a relação dessas categorias com os níveis de contexto (Microssistema, Mesossistema, Macrossistema e Exossistema) definidos pelo Modelo Bioecológico. Após, foi analisada a relação das categorias com os elementos de vulnerabilidade da criança para situações adversas em seu desenvolvimento. Da categorização dos fatores de exposição, ocorreu a construção dos marcadores de vulnerabilidade, seus componentes e seus manuais operacionais. Esses conteúdos foram submetidos a duas rodadas de validação de conteúdo com juízes peritos na área de saúde da criança e desenvolvimento infantil. Essa pesquisa foi aprovada pelo Comitê de Ética da Escola de Enfermagem da Universidade de São Paulo por meio do Certificado de Apresentação para Apreciação Ética nº 57933816.8.0000.5392. Resultados: A amostra final de artigos incluídos para a extração dos dados foi de 112.No contexto do Microssistema e Mesossistema, os fatores de exposição foram categorizados como: difilculdades nas relações sustentadoras contínuas; adversidades nas relações familiares e no apoio social, e situação de adoecimento dos cuidadores que influem nos processos proximais. No Exossistema e no Macrossistema os fatores de exposiçãoforam categorizados como: vulnerabilidades sociais dos cuidadores e fragilidades das políticas públicas, que condicionam as condições materiais e sociais da família. A partir dessas categorias, foram construídos oito marcadores de vulnerabilidade, seus 39 componentes e os respectivos manuais operacionais. Participaram da primeira rodada 17 juízes, que tiveram concordância máxima de 100% e mínima de 64% na validação dos marcadores, seus componentes e manuais operacionais. O material foi revisado com as sugestões dos juízes. Na segunda rodada, participaram 11 juízes com concordância máxima de 100% e mínima de 73 %, validando os oito marcadores propostos com seus 36 componentes. Considerações finais: A síntese dos fatores de exposição, apoiada em uma teoria de desenvolvimento abrangente, permitiu a construção de marcadores de vulnerabilidade que tiveram alta aprovação. O consenso obtido pelos juízes permite que essa tecnologia seja testada na prática clínica, para verificar sua capacidade preditiva, com potencial de antecipação dos fatores de exposição subsidiando a prevenção das disfunções socioemocionais. / Introduction: The socioemotional development of infants is conditioned by the exposure to context-related factors, whose presence defines infants vulnerability to socioemotional dysfunctions. The synthesis of exposure factors as qualitative markers of vulnerability holds up the construction of tools, which capture vulnerability situations and promote the socioemotional development. Objectives: To build vulnerability markers of infants for dysfunctions in their socioemotional development and to perform their content validation. Method: Methodological research with qualitative and quantitative approach, based on the Bioecological Model of Human Development, and implemented through two research steps: data collection and synthesis, and content validation. The identification of exposure factors occurred through an integrative review, carried out between April and August 2016, with defined inclusion and exclusion criteria of studies, and systematic search strategies. The identified data were collected, submitted to the categorical thematic analysis technique. The exposure factors were grouped according their semantic similarity and it was analised the relation of categories with the context levels (Microsystem, Mesosystem, Exosystem and Macrosystem) defined by the Bioecological Model. Subsequently, it was analised the relation of categories with the elements of vulnerability of children to adverse situations in their development. From the categorization of the exposure factors, the construction of the vulnerability markers, their components and their operational manuals occurred. These contents were submitted to two rounds of content validation with expert judges in the field of child health and child development. This research was approved by the Ethics Committee of the Nursing School of the University of São Paulo through the Certificate of Presentation for Ethical Appreciation nº 57933816.8.0000.5392. Results: The final sample of included articles for data collection was 112. In the context of the Microsystem and Mesosystem, the exposure factors were categorized as difficulties in the ongoing nurturing relationships; adversities in family relationships and social support, and the caregivers\' illness situation that influence the proximal processes. In the Exosystem and Macrosystem, the exposure factors were categorized as caregivers\' social vulnerabilities and weaknesses of public policies determining the material and social conditions of the family. From these categories, eight vulnerability markers, their 39 components and their operational manuals were built. The first round included 17 judges who had a maximum agreement of 100% and a minimum of 64% in the validation of the markers, their components and operational manuals. The material was revised with the judgessuggestions. In the second round, 11 judges participated with a maximum agreement of 100% and a minimum of 73%, validating the eight proposed markers with their 36 components. Final Considerations: The synthesis of exposure factors supported by a comprehensive development theory allowed the construction of vulnerability markers that had high approval. The consensus obtained by the judges allows that this technology be tested in clinical practice, to verify its predictive capacity, with a potential of anticipation of the exposure factors subsidizing the prevention of socioemotional dysfunctions.

As mucopolissacaridoses (MPS) são um grupo de doenças metabólicas hereditárias causadas pela deficiência de enzimas lisossomais específicas, que causam alterações físicas e/ou comportamentais crônicas e progressivas. Um fenótipo comportamental é um padrão característico de observações motoras, cognitivas, linguísticas e sociais consistentemente associado a uma condição biológica. Tal fenótipo pode ser um transtorno mental ou outras características de comportamento não necessariamente associadas a transtornos. No caso específico das mucopolissacaridoses, embora haja diversos relatos na literatura sobre as altas taxas de ocorrência de problemas de comportamento na síndrome de Sanfilippo (MPS III), muito pouco é conhecido sobre as características comportamentais das outras entidades (MPS I, II, IV, VI e VII). Este trabalho pretendeu avaliar e descrever as alterações psiquiátricas encontradas em 22 pacientes com MPS atendidos em três serviços de genética clínica (4 MPS I, 5 MPS II, 1 MPS III, 4 MPS IV, 7 MPS VI, 1 MPS VII). As avaliações foram feitas através de instrumentos específicos, traduzidos e validados para nossa população, a saber: K-SADS PL, ATA, CARS, CGAS; e um instrumento traduzido, mas ainda sem validação brasileira: Escalas de Comportamento Adaptativo de Vineland. Os resultados mostraram que esses indivíduos apresentam altas taxas de transtornos mentais ao longo da vida, comportamento adaptativo deficitário e funcionamento global prejudicado. Além disso, observou-se um grande impacto familiar da doença, abandono escolar por falta de condições de acesso e de preparo da própria escola, grande dependência dos indivíduos avaliados e sobrecarga de um único cuidador, geralmente a mãe. Também ficou evidente o peso trazido pelo próprio tratamento, traduzido em uma recusa em aceitar novas propostas clínicas oferecidas. Concluiu-se que a população estudada é altamente vulnerável dos pontos de vista pessoal, familiar e social, sendo necessários mais estudos para seu melhor conhecimento e elaboração de programas e políticas de atendimento mais direcionados para suas necessidades / Mucopolysaccharidoses (MPS) are a group of hereditary metabolic diseases caused by deficient lysossomal enzymes, that lead to progressive physic and/or behavioral abnormalities. A behavioral phenotype is a characteristic pattern of motor, cognitive, linguistic and social observations, consistently associated to a biological condition. That phenotype may be a mental disorder or other behavioral characteristics not necessarily associated to any specific disorder. Referring to MPS, altohugh there are several descriptions of high ocurrence of behavioral problems in patients with Sanfilippo Syndrome (MPS III), the knowledge about behavioral characteristics of the other types of MPS is scarce. This work intended to analyse and describe psychiatric alterations in 22 patients with MPS from three services of medical genetics. Evaluation was made using specific instruments, translated and validated for use with brazilian population: K-SADS-PL, ATA, CARS, CGAS; and one instrument translated but not validated for brazilian population: Vineland Adaptive Behavior Scales. Results showed high lifetime prevalence of mental disorders, deficient adaptive behavior, and poor global functioning. Besides, it was observed intense familiar impact, high drop out rates from school, highly dependent individuals, and excessive burden for the caretaker. It was also evidenced the burden of the treatment itself. The conclusion was that this population is extremely vulnerable, and that it is necessary the realization of more studies for the better understanding of its specific necessitites