Institute for Community Inclusion

BACKGROUND: The changed societal views of persons with disabilities are reflected in the 2006 United Nations Convention on the Rights of Persons with Disabilities. However, what is not specified in the Convention is how to operationalise and measure the Articles composing the Convention, and how to use that information to further enhance the human rights of persons with disabilities. METHOD: The authors analyse the relationships between eight core quality of life domains and the 34 Articles contained in the Convention. RESULTS: There is a close relationship between the core quality of life domains and the 34 Articles contained in the Convention. Furthermore, the current status of these Articles can be evaluated through the assessment of indicators associated with the eight core quality of life domains. CONCLUSIONS: Based on the assessment of these quality of life-related outcomes, three strategies can be used to enhance the human rights of persons with intellectual disability. These three are to employ person-centred planning, publish provider profiles and implement a system of support.

This article presents descriptive, quantitative data from 737 school personnel and parents Who support the education of students With a full range of disabilities in general education classes. The study addresses (a) hoW special education teachers and paraprofessionals spend their time, (b) perspectives of paraprofessionals about certain paraprofessional practices, and (c) perspectives of professionals and parents about schoolWide practices associated With inclusive special education that may contribute to reducing inappropriate utilization of special education paraprofessionals. The findings highlight concerns and suggest that focusing change efforts on paraprofessional issues Without corresponding attention to general and special education issues is akin to addressing the symptoms of a problem rather than its roots.

OBJECTIVES: The objectives are to describe health outcomes and hospital resource use of children after tracheotomy and identify patient characteristics that correlate with outcomes and hospital resource use. PATIENTS AND METHODS: A retrospective analysis of 917 children aged 0 to 18 years undergoing tracheotomy from 36 children's hospitals in 2002 with follow-up through 2007. Children were identified from ICD-9-CM tracheotomy procedure codes. Comorbid conditions (neurologic impairment [NI], chronic lung disease, upper airway anomaly, prematurity, and trauma) were identified with ICD-9-CM diagnostic codes. Patient characteristics were compared with in-hospital mortality, decannulation, and hospital resource use by using generalized estimating equations. RESULTS: Forty-eight percent of children were <or=6 months old at tracheotomy placement. Chronic lung disease (56%), NI (48%), and upper airway anomaly (47%) were the most common underlying comorbid conditions. During hospitalization for tracheotomy placement, children with an upper airway anomaly experienced less mortality (3.3% vs 11.7%; P < .001) than children without an upper airway anomaly. Five years after tracheotomy, children with NI experienced greater mortality (8.8% vs 3.5%; P <or= .01), less decannulation (5.0% vs 11.0%; P <or= .01), and more total number of days in the hospital (mean [SE]: 39.5 [4.0] vs 25.6 [2.6] days; P <or= .01) than children without NI. These findings remained significant (P < .01) in multivariate analysis after controlling for other significant cofactors. CONCLUSIONS: Children with upper airway anomaly experienced less mortality, and children with NI experienced higher mortality rates and greater hospital resource use after tracheotomy. Additional research is needed to explore additional factors that may influence health outcomes in children with tracheotomy.

BACKGROUND: Care advances in the United States (US) have led to improved survival of children with neurological impairment (NI). Children with NI may account for an increasing proportion of hospital resources. However, this assumption has not been tested at a national level. METHODS AND FINDINGS: We conducted a study of 25,747,016 US hospitalizations of children recorded in the Kids' Inpatient Database (years 1997, 2000, 2003, and 2006). Children with NI were identified with International Classification of Diseases, 9th Revision, Clinical Modification diagnoses resulting in functional and/or intellectual impairment. We assessed trends in inpatient resource utilization for children with NI with a Mantel-Haenszel chi-square test using all 4 y of data combined. Across the 4 y combined, children with NI accounted for 5.2% (1,338,590) of all hospitalizations. Epilepsy (52.2% [n = 538,978]) and cerebral palsy (15.9% [n = 164,665]) were the most prevalent NI diagnoses. The proportion of hospitalizations attributable to children with NI did not change significantly (p = 0.32) over time. In 2006, children with NI accounted for 5.3% (n = 345,621) of all hospitalizations, 13.9% (n = 3.4 million) of bed days, and 21.6% (US$17.7 billion) of all hospital charges within all hospitals. Over time, the proportion of hospitalizations attributable to children with NI decreased within non-children's hospitals (3.0% [n = 146,324] in 1997 to 2.5% [n = 113,097] in 2006, p<.001) and increased within children's hospitals (11.7% [n = 179,324] in 1997 to 13.5% [n = 209,708] in 2006, p<0.001). In 2006, children with NI accounted for 24.7% (2.1 million) of bed days and 29.0% (US$12.0 billion) of hospital charges within children's hospitals. CONCLUSIONS: Children with NI account for a substantial proportion of inpatient resources utilized in the US. Their impact is growing within children's hospitals. We must ensure that the current health care system is staffed, educated, and equipped to serve this growing segment of vulnerable children.

This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings in the planning. Siblings who were most involved in future planning were older, more involved in disability activities, and provided more support to their sibling with disabilities. About 38% of siblings expected to be primary caregivers and were more likely to expect this role if the sibling with a disability lived closer and was female, had more sibling contact, provided them with more support, and felt greater caregiving satisfaction. Major support needs of siblings were for support groups, workshops-training on how to assume caregiving responsibility, financial support, and printed material on making future plans.

BACKGROUND: Over the last decades, there have been great advances in health care delivered to children with chronic conditions, but not all children have benefitted equally from them. OBJECTIVES: To describe health inequities experienced by children with chronic health conditions. METHODS: We performed a literature review of English-language studies identified from the Medline, Centers for Disease Control and Prevention, National Cancer Institute, and Cystic Fibrosis Foundation Web sites that were published between January 1985 and May 2009, included children aged 0 to 18 years, and contained the key words "incidence," "prevalence," "survival," "mortality," or "disparity" in the title or abstract for the following health conditions: acute leukemia, asthma, attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorders, cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, HIV/AIDS, major congenital heart defects, major depressive disorder, sickle cell anemia, spina bifida, and traumatic brain injury. RESULTS: Black children had higher rates of cerebral palsy and HIV/AIDS, were less likely to be diagnosed with ADHD, had more emergency department visits, hospitalizations, and had higher mortality rates associated with asthma; and survived less often with Down syndrome, type 1 diabetes, and traumatic brain injury when compared with white children. Hispanic children had higher rates of spina bifida from Mexico-born mothers, had higher rates of HIV/AIDS and depression, were less likely to be diagnosed with ADHD, had poorer glycemic control with type 1 diabetes, and survived less often with acute leukemia compared with white children. CONCLUSIONS: Serious racial and ethnic health and health care inequities persist for children with chronic health conditions.

Abstract The authors present findings from a 2009 survey of postsecondary education ( PSE ) programs for students with an intellectual disability ( ID ) conducted in the U nited S tates. The survey was designed to collect descriptive information on characteristics and practices of existing PSE programs for students with an ID . The survey consisted of 63 items organized into 10 sections including: institution or program characteristics, dual enrollment characteristics, referral and application process, college course access and supports, employment, residential options and campus access, family support, student outcomes, challenges, and program contact information. Some 149 programs in institutions of higher education in 39 states indicated that they served students with ID . PSE program characteristics included basic characteristics, recruitment and admission, course access, campus activities, accommodations, funding, collaboration, employment, and residential services. The results of the survey show that for students with an ID , the college experience differs in a number of important ways from the experiences of their peers without an ID . The high degree of variability among programs responding to the survey suggests that the experiences of students with ID differ from one program to another as well. The authors note that their findings can be used to describe current practice as well as to serve as a baseline of practice that will be important to reference as the field evolves.

Assigning one-to-one paraprofessionals has become an increasingly common response to support students with intellectual and other developmental disabilities in general education classrooms. This article challenges the conventional wisdom that such an approach to service provision is necessarily a desirable and supportive action. Five main reasons are presented that challenge overreliance on the use of one-to-one paraprofessionals in inclusive classrooms, establishing it as a critical issue in special education. A series of recommended positions and initial actions are offered to spur debate and encourage development of alternatives to the status quo.

Periodontal diseases including tooth loss might increase systemic inflammation, lead to immune dysregulation and alter gut microbiota, thereby possibly influencing colorectal carcinogenesis. Few epidemiological studies have examined the association between periodontal diseases and colorectal cancer (CRC) risk. We collected information on the periodontal disease (defined as history of periodontal bone loss) and number of natural teeth in the Nurses' Health Study. A total of 77,443 women were followed since 1992. We used Cox proportional hazard models to calculate multivariable hazard ratios (HRs) and 95% confidence intervals (95% CIs) after adjustment for smoking and other known risk factors for CRC. We documented 1,165 incident CRC through 2010. Compared to women with 25-32 teeth, the multivariable HR (95% CI) for CRC for women with <17 teeth was 1.20 (1.04-1.39). With regard to tumor site, the HRs (95% CIs) for the same comparison were 1.23 (1.01-1.51) for proximal colon cancer, 1.03 (0.76-1.38) for distal colon cancer and 1.48 (1.07-2.05) for rectal cancer. In addition, compared to those without periodontal disease, HRs for CRC were 0.91 (95% CI 0.74-1.12) for periodontal disease, and 1.22 (95% CI 0.91-1.63) when limited to moderate to severe periodontal disease. The results were not modified by smoking status, body mass index or alcohol consumption. Women with fewer teeth, possibly moderate or severe periodontal disease, might be at a modest increased risk of developing CRC, suggesting a potential role of oral health in colorectal carcinogenesis.

Little is known about the factors that shape the employment-related decisions of individuals with intellectual and/or developmental disabilities. Findings from qualitative interviews with individuals, their family members, and employment-support professionals from four community rehabilitation providers throughout Massachusetts were reported. Recognizing the value of participatory action research, we also included a co-researcher with intellectual disability who participated in all facets of the research process. Findings revealed a collection of people and factors considered influential in employment-related decision-making. The family in the formative years, school-based staff and early employment experiences, the culture of the community rehabilitation providers, the job developer, and personal preferences all influenced participants' decisions. Through understanding these persuasive elements, we offer recommendations to those in the intellectual and developmental disabilities field to optimize employment choices and outcomes.

Limb amputations are frequently performed as a result of trauma inflicted during conflict or disasters. As demonstrated during the 2010 earthquake in Haiti, coordinating care of these patients in austere settings is complex. During the 2011 Humanitarian Action Summit, consensus statements were developed for international organizations providing care to limb amputation patients during disasters or humanitarian emergencies. Expanded planning is needed for a multidisciplinary surgical care team, inclusive of surgeons, anesthesiologists, rehabilitation specialists and mental health professionals. Surgical providers should approach amputation using an operative technique that optimizes limb length and prosthetic fitting. Appropriate anesthesia care involves both peri-operative and long-term pain control. Rehabilitation specialists must be involved early in treatment, ideally before amputation, and should educate the surgical team in prosthetic considerations. Mental health specialists must be included to help the patient with community reintegration. A key step in developing local health systems the establishment of surgical outcomes monitoring. Such monitoring can optimizepatient follow-up and foster professional accountability for the treatment of amputation patients in disaster settings and humanitarian emergencies.

OBJECTIVE: To describe parent perceptions of their child's hospital discharge and assess the relationship between these perceptions and hospital readmission. DESIGN: A prospective study of parents surveyed with questions adapted from the care transitions measure, an adult survey that assesses components of discharge care. Participant answers, scored on a 5-point Likert scale, were compared between children who did and did not experience a readmission using a Fisher's exact test and logistic regression that accounted for patient characteristics associated with increased readmission risk, including complex chronic condition and assistance with medical technology. SETTING: A tertiary-care children's hospital. PARTICIPANTS: A total of 348 parents surveyed following their child's hospital discharge between March and October 2010. INTERVENTION: None. MAIN OUTCOME MEASURE: Unplanned readmission within 30 days of discharge. RESULTS: There were 28 children (8.1%) who experienced a readmission. Children had a lower readmission rate (4.4 vs. 11.3%, P = 0.004) and lower adjusted readmission likelihood [odds ratio 0.2 (95% confidence interval 0.1, 0.6)] when their parents strongly agreed (n = 206) with the statement, 'I felt that my child was healthy enough to leave the hospital' from the index admission. Parent perceptions relating to care management responsibilities, medications, written discharge plan, warning signs and symptoms to watch for and primary care follow-up were not associated with readmission risk in multivariate analysis. CONCLUSIONS: Parent perception of their child's health at discharge was associated with the risk of a subsequent, unplanned readmission. Addressing concerns with this perception prior to hospital discharge may help mitigate readmission risk in children.

OBJECTIVES: To identify children at risk for in-hospital mortality following tracheotomy. DESIGN: Retrospective cohort study. SETTING: 25 746 876 US hospitalisations for children within the Kids' Inpatient Database 1997, 2000, 2003 and 2006. PARTICIPANTS: 18 806 hospitalisations of children ages 0-18 years undergoing tracheotomy, identified from ICD-9-CM tracheotomy procedure codes. MAIN OUTCOME MEASURE: Mortality during the initial hospitalisation when tracheotomy was performed in relation to patient demographic and clinical characteristics (neuromuscular impairment (NI), chronic lung disease, upper airway anomaly, prematurity, congenital heart disease, upper airway infection and trauma) identified with ICD-9-CM codes. RESULTS: Between 1997 and 2006, mortality following tracheotomy ranged from 7.7% to 8.5%. In each year, higher mortality was observed in children undergoing tracheotomy who were aged <1 year compared with children aged 1-4 years (mortality range: 10.2-13.1% vs 1.1-4.2%); in children with congenital heart disease, compared with children without congenital heart disease (13.1-18.7% vs 6.2-7.1%) and in children with prematurity, compared with children who were not premature (13.0-19.4% vs 6.8-7.3%). Lower mortality was observed in children with an upper airway anomaly compared with children without an upper airway anomaly (1.5-5.1% vs 9.1-10.3%). In 2006, the highest mortality (40.0%) was observed in premature children with NI and congenital heart disease, who did not have an upper airway anomaly. CONCLUSIONS: Congenital heart disease, prematurity, the absence of an upper airway anomaly and age <1 year were characteristics associated with higher mortality in children following tracheotomy. These findings may assist provider communication with children and families regarding early prognosis following tracheotomy.

Diversifying science, technology, engineering, and mathematics (STEM) requires a critical examination of institutional structures at every educational level. In higher education, performance in core introductory courses required for STEM degrees is strongly associated with degree completion. Leveraging a multi-institutional database, we examine nearly 110,000 student records from six large, public, research-intensive universities in order to assess whether these introductory courses disproportionately weed out underrepresented minority (URM) students. We find that the association between low performance in an introductory STEM class and failure to obtain a STEM degree is stronger for URM students than for other students, even after controlling for academic preparation in high school and intent to obtain a STEM degree. To facilitate interpretation of our multivariate logistic regression model, and to highlight the dire situation in higher education, we also calculate predicted probabilities of STEM degree attainment for students of various demographics. The probability of obtaining a STEM degree for a STEM-intending white male student with average academic preparation who receives grades of C or better in all introductory courses is 48%. In contrast, for an otherwise similar URM female student, the probability is merely 35%. If these students receive less than a C in even one introductory STEM course, the probabilities drop to 33% and 21%, respectively.

This article presents an analysis of disability theory and content in the social work curriculum and advances a theoretically expansive approach to disability that is consistent with social work’s commitment to diversity and the elimination of oppression. A careful examination of relevant social work literature reveals that disability is generally discussed and treated from a diagnostic perspective. We suggest shifting the approach to disability content in social work curricula from one that emphasizes individual deficiency to one that addresses disability as the interaction of a medical condition or diverse conditions with disabling environments.

Abstract Increasingly, people with intellectual disability are seeking, accessing, and benefiting from higher education. This article presents an overview of current legislative and policy issues as they related to postsecondary education for people with intellectual disability, including the Higher Education Opportunity Act, the Americans with Disabilities Act, and state vocational rehabilitation program policies. Policy actions are suggested. In describing existing and emerging practices, critical issues and future challenges are reviewed by the authors. Finally, current research on the impact of postsecondary education on the systems and people involved is shared and recommendations for future areas of exploration are provided.

The final stanza of the children’s poem Helping reminds us of a simple caveat we all would be well advised to consider: ‘Some kind of help is the kind of help that helping’s all about. And some kin...

Background Scholars have called for research approaches that actively include and are driven by people with intellectual disabilities, but the process of inclusive data analysis has been scarcely documented in the literature. This paper demonstrates the process university researchers and a group of self-advocates used to analyse and interpret data collected during a participatory action research (PAR) project to increase the group’s capacity for self-advocacy. Materials and Methods University researchers presented numerical data in three visual formats for analysis. Seventeen People First members analysed and interpreted the data using a modified focus group approach. Results All members participated in data analysis, but not all members participated in data interpretation. Members’ interpretations suggest that the group felt an increased sense of empowerment and heightened awareness as a result of their increased capacity to run a meeting and involvement in the PAR cycle of action and reflection. Conclusions Findings suggest that strategies such as visual representation of data, group analysis, and familiarity with data collection tools foster an inclusive process of analysis and interpretation.

A qualitative study involving 10 mothers who received a prenatal diagnosis of Down syndrome and chose to continue their pregnancy was presented. The time frame considered was diagnosis to delivery. We looked at how the diagnosis was presented, the decision to continue the pregnancy, and the mothers' experience with professionals from diagnosis to delivery. Mothers' suggestions to others facing the same challenges and to their health care providers were discussed as were the types of support given these mothers and what was or would have been most helpful to them. The importance of professionals reviewing their procedures and protocols for working with families facing similar circumstances was stressed.

Abstract Family care provision is the norm for adults with intellectual and developmental disabilities ( I / DD ), even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as aging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual aging with I / DD . Data are drawn from semi‐structured, in‐depth interviews with a sample of adults over age 40, living in the U nited S tates, and caring for a sibling with I / DD ( n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long‐term services and supports as well as educational resources that accommodate this population of carers as they age together with their sibling with I / DD .