LEND Cohort 2 Fellows’ Projects

September 2009 through May 2010

Gritter, Katie: Training and Ongoing Technical Assistance in Interventions for Students with Autism Spectrum Disorders

Abstract: A survey of a convenience sample of 82 elementary-level general and special education teachers in Connecticut was conducted to determine characteristics of initial training as well as ongoing technical assistance related to eight empirically supported interventions for students with Autism Spectrum Disorders (ASD). Results indicated that, in the sample of special educators, the percentage reporting training was at least 50% for each of the interventions except one. In the sample of general educators, however, the percentage reporting training was lower than 25% for each of the interventions except one. Averaging response percentages across interventions, training was most often reported as having been provided on-site, by an in-district professional, for 1-5 hours, and for 1-10 trainees. Effect size calculations suggested differences between the two teacher groups when specific characteristics of adult learning methods (see Trivette, Dunst, Hamby, & O’Herin, 2009, for definitions of these adult learning method characteristics) used to provide training were examined. Among all trained teachers, and averaging response percentages across interventions, the most commonly reported type of ongoing technical assistance was coaching, and the most often reported providers were special education teachers and pupil/related services personnel. Finally, commonly reported progress monitoring methods included classroom observations, daily behavior charts or checklists, and collaboration amongst personnel. Implications for training and technical assistance in Connecticut, as well as limitations of the project, are discussed.

Jaffery, Rose: Using a Home-school Log to Facilitate Communication Between Educators and Parents

Abstract: The quality of home-school and interdisciplinary collaboration has been associated with improvements in parental satisfaction, student outcomes, and family-school partnerships, particularly for students with behavioral concerns who often have an increased need for such efforts. However, cost-effective and efficient tools to facilitate collaboration are lacking in schools, as are progress-monitoring methods to inform decision-making. The purpose of this pilot study was to evaluate the effectiveness of a home-school log for facilitating communication and data-sharing between home and school and between educators. The log was used for two students with behavioral concerns at a public elementary school in the Northeast. Each student’s educators rated the student’s classroom behavior daily during problematic activities. Then, at home the parents completed an activity which consisted of a) describing briefly what the student did at home that day, b) enumerating any questions the parents had, and c) indicating whether the student slept well and ate a full breakfast. After four weeks, parents and educators were interviewed, and results indicated that the log helped educators to collect and share behavioral data on their students efficiently, and also helped form an effective family-school partnership. One student particularly benefited from the log as it served as a prompt for his parents to spend more time with him resulting in much improvement in his behavior at school. Findings from this study will help inform revision of the log, and guide future research on effective and time-efficient ways for educators and parents to collect data and communicate with each other.

Kern, Laura: Working with the Law: Classroom Placement

Abstract: Researchers and policymakers have found that the role and perspectives of parents on issues of classroom placement are significant. Lack of knowledge and fears about the issues surrounding classroom placement can impact the ability of parents to seek the most appropriate classroom placement for their child. Furthermore available material that parents might access on these topics can be difficult to comprehend. This project consists of a Workbook, “Understanding the Law on Classroom Placement: A Workbook for Parents”, on classroom placement for parents of children with special needs. The Workbook will contain several sections: the law and the Least Restrictive Environment of the Individuals with Disabilities Education Improvement Act of 2004; inclusion; and strategies for enhancing inclusion; and additional resources. To ensure readability, the reading scales for comprehension will be applied to the material, with the aim of achieving a Flesch-Kincaid Grade Level of about 7th grade. This project can be used also as a supplement to a training session for parents. Throughout the Workbook, parents will have opportunities to reflect and write down their thoughts about the topics and how the topics apply to the education of their child. The ultimate goal of the Workbook is for parents to learn about the Least Restrictive Environment, inclusion, and relevant strategies to improve inclusion in education. More importantly, the Workbook is designed for parents to engage actively in the application of this new knowledge to the needs of their child and her or his educational placement.

Klonoski, Erin: Down Syndrome and Alzheimer’s Disease: A Retrospective Medical Records Review

Abstract: The need for and importance of a training program for caregivers of adults with Down syndrome and a diagnosis of Alzheimer’s or unspecified dementia cannot be overstated. With a prevalence of Alzheimer’s of 75 percent for individuals with Down syndrome over the age of 60, adequate health and social supports must exist in order to meet the needs of this population. The goal of this study was to identify training opportunities for caregivers of adults with Down syndrome and Alzheimer’s disease. This was accomplished by relying upon relevant information contained within the medical records of patients with Down syndrome at risk for or with a diagnosis of dementia. These medical records were obtained from a Down syndrome assessment clinic based in New England which provides medical and diagnostic services to adults with Down syndrome at risk for dementia and their families. Based upon a review of thirty patient medical records, a number of characteristics of this population were identified that merit consideration in development of a comprehensive training program. The following emerged during data analysis as trends that warrant further exploration: dependence on group home staff and supports, development of person-centered recommendations for care that reflect level of functioning, a lack of patients who present with memory-related symptoms during their initial visit, availability of support for individuals with no family contact, and the importance of follow-up testing to monitor progression. In order for a training program to adequately meet the needs of these individuals, it must draw from the traits of this population. This study attempted to identify relevant characteristics so that they may be applied in development of a formal training program.

Miller, Wayne: Simplified SOP Guide for Parents

Abstract: The purpose of this project was to produce a guide for Connecticut parents and special education students regarding the IDEA 2004 requirement for a school delivered document known as the Summary of Performance. A sample guide using 8th grade language was delivered by email to Family Faculty members of the University of Connecticut Health Center LEND program. The proposed guide was prepared using language written at the 8th grade level. Family Faculty members provided comments and suggestions to improve the proposed guide, all of which were incorporated into the final brochure. The guide is a two-sided tri fold brochure providing 8th grade reading language to explain methods that both parents and special education students can use to ensure the SOP provides useable information for both the student and post high school service providers. During the study LEND staff recommended that a guide to help SOP preparers recognize the importance of providing a document understandable by parents and others service providers be developed. A guide for SOP preparers was developed using current SOP literature and State instructions to SOP preparers. The Flesch Ease of Reading Level is recommended to preparers as an easily available tool to determine the ease of reading of written language. The resulting documents can help all stakeholders in the SOP process produce an SOP that is better able to help special education students exiting secondary education to have access to services to help them in their postsecondary life.

Norwood, Dwight: Use of Hospice and Palliative Care by People with Developmental Disabilities in New England

Abstract: Due to improvements in medical care, people with developmental disabilities are living nearly as long as the general population and tending to die of similar causes. This increases the likelihood that they will enter palliative care or hospice like members of the general population. The service model most commonly used for hospice and palliative care is that of a multi-disciplinary team meeting to develop an individualized care plan. The literature suggests that little has been done to address the special needs of people who are developmentally disabled in hospice or palliative care settings. An earlier study in New Jersey had indicated that hospice and palliative care was seriously underutilized by people with developmental disabilities compared to the general population. A status survey of hospice and palliative care organizations in New England was undertaken to establish a baseline for care of people with developmental disabilities using an instrument which was developed and employed previously in the survey of New Jersey hospices. There was a 51 percent return of surveys. The survey showed substantial improvement in end-of-life care for people with developmental disabilities over the earlier study with possible usage running as high as 41 percent compared to 38.5 percent for the general population.

Raymond, Christine: Autism screening by Connecticut pediatricians

Abstract: The prevalence of Autism Spectrum Disorders is steadily increasing as evidenced by the most recent CDC estimates of 1 in 110 children. Current research demonstrates that early identification and subsequent early intervention are the best practice standards, which lead to the most promising outcomes. The American Academy of Pediatrics (AAP) has delineated clear guidelines to facilitate this process, yet there continue to be children who receive delayed diagnoses. This article will report the current interdisciplinary, multifaceted approach to fulfilling the needs of families with children on the autism spectrum. This study sought to discover the screening and referral trends in existence among Connecticut pediatricians for toddlers suspected of having developmental delays, specifically Autism Spectrum Disorders, and to identify components of clinical excellence as well as barriers to universal screening that fall within these trends. To evaluate Connecticut’s relative ranking, the results of a student derived questionnaire are compared with the results of a national pilot study launched to determine the fidelity of AAP guideline adherence by a diverse multi-state sample of pediatric practices. The results of this needs assessment survey are also used to support Connecticut pediatricians by communicating areas of current practice excellence and relevant resources to minimize validated barriers to universal screening.

Saxena, Mamta: Manual for Organizing and Evaluating Sibling Support Programs

Abstract: The US Census (2000) reports that 28.9 percent (20,874,130) families living in the United States have at least one family member with a disability. Adult siblings of individuals with developmental disabilities are assumed future caregivers for their brothers or sisters. Owing to advanced medical technologies, individuals with disabilities now routinely outlive their parents. In the present scenario, many states face diminishing dollars for social services and therefore reliance on center-based care-giving services can be unrealistic. Hence, it is important to provide evidence-based effective support in early years to siblings to help them become effective caregivers. A literature review of sibling support programs reports immediate positive outcomes for siblings. Nevertheless, programs do not have rigorous evaluation criteria. In this age of evidence-based practice, an evaluation of the efficacy of the sibling support programs is warranted. Secondly, most Sibling Support Programs have focused on young children and have overlooked adolescent siblings. Finally, procedures for closure and provision of ongoing support to the participants, after the program has ended have not been described. Therefore, in the present manual, “Manual for Organizing and Evaluating Sibling Support Programs,” we have included sections on implementing sibling support programs for adolescent participants, executing program evaluation, and providing ongoing future support to the siblings. The intended audiences of the present manual are program developers, facilitators, researchers, graduate students and other professionals interested in providing support to families of individuals with disabilities and special health care needs.

Thorpe, Linda: A Search for Significance

Abstract: Young adults with higher functioning autism spectrum disorders (ASDs) are attending post-secondary education in growing numbers, in part due to the federal Individuals with Disabilities Education Act (1997), which mandates education support services for birth through age 21. This project serves as a first step in obtaining a reasonable estimate of this student population, by means of an anonymous, national survey, which was disseminated to over 1500 colleges and universities through the Disabled Students Services in Higher Education Listserv. With 163 survey responses, the average number of students with Asperger’s Syndrome per institution in 2009-2010 was 12 students, with a wide range of 0 to 60 students. Community colleges enrolled the greatest numbers per school, with a mean of 18.25, two-year and four year institutions showing considerably fewer with means of 11.7 and 9.98, respectively. These numbers represent a significant increase over data obtained by Caroline Smith, MSW (2007) in a previous study. In addition, limited awareness exists of support services provided to students with ASDs. The majority of postsecondary institutions responding to the survey (98%) employ academic interventions based on models well established with other learning disabilities. Due to core communication and social deficits that define ASDs, experts now believe that academic interventions alone provide inadequate support to many of these students. Forty-five percent of the institutions surveyed provide some level of social support, representing a significant increase in these types of support. A vocational component in post-secondary education may also prove useful to improve employability of these students. Sixteen percent of institutions surveyed provided vocational support.

Wittke, Kacie: Interdisciplinary Training in Graduate Schools at the University of Connecticut

Abstract: Interdisciplinary practice is a service delivery model that increases communication and collaboration between professionals which can improve the quality of care for individuals with developmental disabilities by preventing overlap in services, enhancing treatment monitoring, and reducing disconnected goals. The current study surveyed faculty and graduate students from audiology, speech-language pathology, physical therapy, human development and family studies, public health, nursing, school psychology, and special education on the inclusion of interdisciplinary training in graduate schools at the University of Connecticut. A small sample size allowed for limited descriptive analyses, but nonetheless suggested a disconnect between faculty reports of teaching material and student reports of receiving such training. Human development and family studies represented the one discipline whose students consistently reported learning about other disciplines and interdisciplinary practice more frequently. The preliminary results suggest that students are not receiving adequate interdisciplinary training in graduate school, faculty are not conveying the material they believe they are teaching, and students rarely take courses outside their department. These findings can be used to inform a follow-up study with a larger sample size to learn how to incorporate interdisciplinary training more effectively into graduate programs.

Zheng Song, David: Children with Autism Spectrum Disorders in China

Abstract: There are estimated 405,172 children with Autism Spectrum Disorders (ASDs) in China. These children are not as fortunate as their peers in developed countries in terms of getting a diagnosis, intervention services, inclusion, and legal protections. Their families are facing tremendous hardships—not only because of the shortage of financial and educational resources and necessary legal protections, but also because they are extraordinarily vulnerable to many psychological problems. Few previous studies have identified what resources and emotional supports are available for these children and their families. These are the study questions of this paper. This study aims to approach these research questions with both quantitative and qualitative methodologies. Seven professionals in mainland China—health care providers, early intervention professionals, directors of early intervention organizations, and researchers—who are currently working for children with ASDs were interviewed via telephone. At the same time, a mail survey was conducted with a sample of 49 parents through an early intervention organization in China. Children with ASDs in China usually have delayed diagnosis, very limited and often delayed early intervention, problems with inclusion into public schools and the community, and sparse resources. Parents are often embarrassed by limited resources and suffer from many psychological problems. Treating children with ASDs is more of a social issue than a medical one in China. The Chinese government needs to continue its endeavor in advocating for social justice. The government has a responsibility to change perspectives toward all people with disabilities by showing that disability results partially from an unfriendly society and how the lives of people with disabilities can be changed through improving infrastructure and creating resources. Collaborative efforts among the policy makers, health care providers, school educators, researchers, and parents are urgently needed to make sure children with ASDs in China have equality in health care, education, and social acceptance as do their typically-developing peers.