LEND Cohort 3 Fellows’ Projects

Fall 2010 through Spring 2011

Laura Czernik: Understanding Speech-language Pathology and Occupational Therapy Co-treatments: Professional and Parent Perspectives

Abstract: Co-treatments between Speech-Language Pathologists (SLPs) and Occupational Therapists (OTs) are an interdisciplinary approach to service delivery currently used by some school systems and private practices. This intervention approach entails that SLPs and OTs simultaneously carryout a therapy session utilizing and combining their separate areas of expertise. Responding to the current lack of research on co-treatments, this study serves to gain a better understanding of the utilization, implementation, and advantages of this approach. Three co-treatments teams, consisting of one SLP and one OT each, participated in this study. Individual interviews of the SLPs and OTs were completed to understand the professionals’ perspectives on co-treatments. Furthermore, surveys were sent to six families of children receiving co-treatments to discover parent’s perspectives on co-treatments. No parent surveys were returned, allowing for only the professionals’ perspectives to be reported. The results of this study indicated possible benefits of co-treatments for the children and professionals, as well as the appropriateness of this intervention method for children and adolescents of all ages, and for various disabilities. This study additionally revealed that none of the participants received training on the implementation of co-treatments, and that no scheduled meetings existed among the participants to plan and coordinate co-treatments. Furthermore, while parents ultimately made the decision to utilize co-treatments, they were not reported to be involved in the implementation of this approach. There also appeared to be variations in the design of co-treatment approaches. Possible areas of further exploration in SLP and OT co-treatments were additionally discussed in this study.

Kate Engelhardt: Asperger’s Disorder in Secondary Environments: A Needs Assessment

Abstract: Despite the growing field of Autism Spectrum Disorders research and the existing knowledge about inclusion of students with disabilities into the least restrictive classroom environments, a knowledge gap exists regarding community level inclusion practices which are specific to students who have Asperger’s Disorder. Many of these students face challenges which make general education environments difficult for academic or social learning. The needs assessment discussed in this paper sought to identify what kind of training professionals in a public high school have received about Asperger’s Disorder, what training they might be interested in receiving, and the barriers that they perceive to creating a fully inclusive learning environment. In a survey of the professionals at one Connecticut high school, 18.98 percent, or 15 of 79 professionals responded. Respondents reported that a general lack of information was a barrier to inclusion and expressed desire for more training about Asperger’s Disorder. Professionals also reported frequently working with members of other professions in an effort to create policy change in their school. Although the results of this needs assessment are not generalizeable, the data does begin to highlight a need and desire for better training of school-based professionals.

Carrie-Ellen Flanagan: Neonatal Follow-up

Abstract: This study aims to understand current practices of Neonatal Developmental Follow-up Programs within New England states and compare how they relate to current recommendations for best practice by the American Academy of Pediatrics. Eight neonatal developmental follow-up programs were identified among the six states in New England and the medical directors of these programs were given an email invitation to participate in an online survey. Results from the four responding programs show that hospitals are using different criteria for referrals. Even a small difference in referral criteria means that a child who may benefit from NICU follow up will not get the specialized care that a NICU follow-up program offers if they are born at a hospital with referral criteria that does not include them. This difference in referral criteria means that geography plays a large part in determining whether a child qualifies to receive NICU follow up services. Although this study focused on a small portion of the United States of America, it can be hypothesized that if this study were to include a larger sample, that some of the same findings would be revealed.

Carlie Hershgordon: Family Faculty Guide

Abstract: The University of Connecticut Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is an interdisciplinary training program. A core feature of the program is the LEND Family Faculty. The Family Faculty consists of parents of children with disabilities who attend seminars, brown bag lunches, give presentations and other related activities. The Family Faculty provides emerging professionals the opportunity to gain knowledge about the expectations of the families they will work with in the career. The UConn LEND program also provides Parent Leadership and Advocacy Training for family members. This project consists of developing a “Family Faculty Guide” to aid in the training of new members of the Family Faculty. Research for the guide consisted of: visiting a variety of websites (each UCEDD and LEND website, AUCD website, Family Voices, and disability it natural), observing a family training session, and interviews with three current members of the Family Faculty. The guide contains five sections: an introduction explaining the purpose of the guide, the principles of family centered care and the purpose of the guide; an overview of the LEND program and the fellows; the role of Family Faculty members; the perspective of experienced family faculty members; and resources. Current family faculty members assessed the guide’s usefulness and based on their feedback revisions were. The ultimate goal of this guide is to provide new members of the family faculty information about the UConn LEND program to further their own learning as well as to enrich the LEND Fellows’ learning experience.

Megan Krell: Creating Supports for Adolescent Siblings of Individuals with Disabilities

Abstract: Siblings support projects have been created to provide an environment for siblings of individuals with disabilities to meet other siblings, learn about disabilities, and offer a space for recreation. Most programs however, are designed for siblings ages 8 to 13, and there are limited supports for adolescent siblings. Before creating an age-appropriate program for adolescents, it was necessary to conduct a needs assessment to determine what types of supports are needed and how, or if, siblings would like to receive supports. Therefore, this research study was designed to determine the types of supports adolescent siblings of individuals with disabilities ages 14 to 16 wanted, and the manner in which sibling support projects should be structured to most appropriately fit the developmental needs of the sibling. Participants were recruited through family support and other disability listservs in Connecticut. A qualitative approach was used for this study, as the researcher was attempting to gain as much information and insight into participant opinions as possible. The interviewing methodology was utilized for this study. Participant responses to the structured interview questions summarized the qualitative data obtained in this study. Participant experiences were reviewed and tally counts are used to describe the participant responses. Results suggest that siblings of individuals with disabilities ages 14 to 16 would be interested in participating in a siblings support project. Results also suggest topics for discussion in sibling support projects include: daily life living with a sibling with a disability, how to deal with having a sibling with a disability, and types of disabilities. Activities that may be beneficial additions to sibling support projects include: outdoor activities, cooking, and arts and crafts. Results from this research study can be used to inform future practice in working with adolescents siblings of individuals with disabilities.

Scott McCarthy: Interdisciplinary Practice Related to Autism Spectrum Disorders in Connecticut

Abstract: Interdisciplinary collaboration is an effective and efficient practice for use in schools. It is particularly useful to support students with disabilities, such as autism spectrum disorders (ASD). Students with ASD typically have impairments in multiple domains so there is an elevated need for collaboration among school personnel. Anecdotal evidence suggests that there is little interdisciplinary collaboration in schools; however there is a clear need to determine the actual amount of collaboration with empirical data. To do so, a survey to address the levels of interdisciplinary collaboration among school personnel to support students with ASD was created. The development of the survey occurred in three phases: item development, initial pilot (N = 5), and formal pilot (N = 15). The results of the formal pilot, which included electronic survey review and interviews, were analyzed into themes. These themes were used to make further revisions to the survey so that it would be a valid and feasible instrument for school-based personnel.

Aisling Meier: Creation of an Audiological Book for Children

Abstract: Audiological evaluations are important for children; they provide information about the child’s auditory function. During the audiological evaluation, participation from the child is required to obtain accurate behavioral results. If the child does not participate, the results cannot be obtained. Many children become anxious prior to an evaluation because of the unknown environment and procedures. To help reduce these anxieties, a booklet was developed to assist children prior to an audiological evaluation. This booklet was designed to illustrate the different steps in the audiological evaluation. It contains pictures of various stages of the evaluation and the information is presented in the first person, from a child’s perspective. The booklet has been reviewed and critiqued by four LEND family faculty and three families prior to receiving an evaluation. The feedback suggested adding more illustrations, text and resources, including more diverse children’s photographs, and translating the booklet into Spanish. The booklet was revised based on the feedback. Based on survey results, families reported that by reading the booklet the children had more knowledge prior to the evaluation, demonstrated less anxiety and were more willing to participate than they might have had if they had not read the booklet. The booklet will be made available on the UCEDD website for referring professionals and families to access in an effort to explain audiological evaluations to children prior to experiencing such evaluations. Prior knowledge will help reduce anxieties seen in children due to the unfamiliarity of the evaluation.

Melissa Collier Meek: Interdisciplinary Practice Related to Autism Spectrum Disorders In Connecticut

Abstract: Interdisciplinary collaboration is an effective and efficient practice for use in schools. It is particularly useful to support students with disabilities, such as autism spectrum disorders (ASD). Students with ASD typically have impairments in multiple domains so there is an elevated need for collaboration among school personnel. Anecdotal evidence suggests that there is little interdisciplinary collaboration in schools; however there is a clear need to determine the actual amount of collaboration with empirical data. To do so, a survey to address the levels of interdisciplinary collaboration among school personnel to support students with ASD was created. The development of the survey occurred in three phases: item development, initial pilot (N = 5), and formal pilot (N = 15). The results of the formal pilot, which included electronic survey review and interviews, were analyzed into themes. These themes were used to make further revisions to the survey so that it would be a valid and feasible instrument for school-based personnel.

Kathryn Min: Informal and Formal Community Supports for Parents: An Assessment of Information Sharing in Connecticut Schools

Abstract: The current pilot study was conducted to collect information from Connecticut school psychologists about their practices in family centered and interdisciplinary care in schools. Utilizing a structured survey, the study examined school psychologists’ knowledge of parent informal and formal community supports and their values related to sharing information with parents and team members. Survey results were limited due to low respondent rate (n=16), but indicated strong support for further (i) training on parent informal and formal community supports, (ii) training in interdisciplinary practice, (iii) training on the school’s procedures for sharing information on community supports with parents, and (iv) development of a resource document including all informal and formal community supports to provide to parents. School psychologists strongly value being resources for parents but share information in a verbal format that may not be aligned with family centered practices that includes sharing information on all available supports. Being a resource for parents is a transactional process, where school psychologists are learning about community supports from parents, especially informal supports. Given the significance of informal supports to foster parent competence, school psychologists should be well versed in these supports and share with parents. Sharing information with team members is strongly valued but information is not necessarily shared with all team members as part of interdisciplinary practice. Further research is needed to assess school psychologists’ practice related to family centered and interdisciplinary practice to be better resources for parents and to promote optimal child outcomes in school.

Colleen O’Connor: Barriers to Assessment for Neuro-Cognitive Effects of Pediatric Cancer

Abstract: This project will utilize qualitative methods to assess physician knowledge and attitudes towards referral for neuro-cognitive effects in child cancer survivors. The 18 pediatric oncologists practicing in Connecticut comprise the population to be studied in this project. Methods will include semi-structured in–depth interviews with pediatric oncologists to explore possible barriers and knowledge gaps. The interviews will examine physician knowledge of neuro-cognitive late effects, knowledge of resources available in the community (including mandated insurance coverage for neuro-psych exams, birth to three, and accommodations in school), and knowledge of legal protections for children and adults with disabilities that may pertain to cancer survivors (IDEA and ADA). It will also examine physician attitudes towards this issue (i.e. whether they perceive it as a significant problem) and reasons for referral (or lack of referral) to services. Perceptions of systems issues will be explored including barriers to receiving follow-up care once a neuro-psych exam is obtained and possible lack of neuro-psych providers who are trained to assess children for the late effects of cancer treatment.

Chris Sullivan: The National Landscape of Interdisciplinary Practices for Infants and Young Children with Disabilities

Abstract: The purpose of this project was to conduct a national assessment of the status of interdisciplinary team practices for infants and young children with disabilities in Part C and Part B, Section 619 programs under the Individuals with Disabilities Education Act (IDEA). The participants, program coordinators from all 50 states and outlying jurisdictions, were contacted by email and invited to participate in an anonymous online survey. Responses were reported as aggregate data and individual coordinators were not personally identified. The survey was comprised of 11 fixed response questions and 8 open-ended questions which were based on recommendations for team practices made in DEC Recommended Practices, A Comprehensive Guide for Practical Application in Early Intervention/Early Childhood Special Education (Sandall, Hemmeter, Smith, & McLean, 2005). All questions addressed policies and procedures concerning team practices, training, and monitoring. Results from the survey were analyzed using simple descriptive statistics and qualitative analysis including examining responses to open-ended questions, categorizing and comparing responses between Part C and Part B, Section 619 programs. Briefly, the majority of respondents reported they have written policies and procedures concerning team practices, however, they did not have written policies about how teams function or make decisions, nor do they monitor team practices. Teaming was rated as important (a rating of 4 or 5 out of a scale of 1 to 5, with 5 being most important) for evaluation of eligibility determination, assessment for IFSP/IEP planning and development, and progress monitoring by the majority of coordinators responding. Training in team decision making and team functioning had not been developed in most states or territories in the past year, nor was it reported as mandatory for service coordinators or service providers. Overall, states and territories reported service providers were implementing existing teaming policies effectively.

Annetta Troche: Knowledge of Autism Spectrum Disorders Care Needs Among the Health Care Professionals in the Intensive Care Units of One Connecticut Hospital

Abstract: The number of people with Autism Spectrum Disorders (ASDs) being seen in the hospital is growing (O’Regan & Drummond, 2008). The hospital environment, with its many sights and sounds, can be difficult for a person with multiple sensory issues, as is the case with many people with ASDs. The busy environment of the intensive care units poses even more challenges. A review of literature reveals that although much is known about the special care needs of individuals with ASDs, little is known about how much health care professionals who work in the intensive care units (ICUs) know of those needs. The results of a survey done among health care professionals working in one hospital’s ICUs are presented. The survey was sent out to 391 health care professionals. A total of 73 persons responded, which is an 18.7 percent response rate. Approximately 90 percent of respondents reported never, rarely or very infrequently seeing someone with an ASD in the ICU. Despite this, most professionals felt it was important in their profession to know how to care for people with an ASD. As one of the respondents commented, “There is not a large older population because the diagnosis was not in vogue decades ago!” This needs assessment may show very different results in years to come. Hospitals that wish to be leaders in the future should begin to plan how they will prepare their staff to best care for people with ASDs and their families. Family-centered care is key and will not only benefit people with ASDs and their families, but all patients and their families.

Christina Turner: Nutrition Education for Young Adults with Developmental Disabilities

Abstract: Overweight and obesity are major public health concerns for adults in the United States, including those with developmental disabilities. Research has indicated that there is a high prevalence of adults with developmental disabilities, living in the community, that are overweight or obese. Because weight management among those with developmental disabilities is a concern, there is a great need for better nutrition education in this population. It has been suggested that nutrition education interventions for those with developmental disabilities be visual, interactive, and culturally appropriate. The purpose of this project was to develop a nutrition education activity that increases nutrition knowledge in young adults with developmental disabilities that is visual, interactive, and culturally appropriate. A nutrition education activity, “The Five Food Groups”, focusing on the five essential food groups was created and implemented to five young adult students with developmental disabilities. The students were evaluated using a pre and post-test, along with observations from the teacher and comments from both students and other staff members. After the implementation of the activity, the class average improved from the pre-test (31 percent) to the post-test (91 percent). Additionally the students were engaged in the activity, were attracted to the activity because of the color, and enjoyed the hands-on component. Staff members appreciated the cultural diversity of the foods presented, while the teacher valued the age and academic appropriateness. This activity seemed to increase nutrition knowledge in students, while providing a positive experience for both students and the teacher. Additionally, the project highlighted some of the benefits to an interdisciplinary approach (a Special Education Teacher and Public Health Student) to educating those with developmental disabilities. Due to the positive results of this project, it is hopeful that more activities will be created that are visual, interactive, and culturally appropriate to help educate those with developmental disabilities.