This presentation will define a new experimental role known as the Care Integration Specialist and explain how this role functions within a clinical setting, coordinating care across healthcare and community support systems. Preliminary and anecdotal data will be shared showing how this role positively impacts healthcare and quality of life of individuals with intellectual and developmental disabilities.
Nichole Guerra is a Research Coordinator at The Resource Exchange Research Center. She will earn her Doctor of Business Administration in June 2017. Her educational background is in Health Science and Nonprofit Management in the Human Services industry. Mrs. Guerra’s career in the field of intellectual and developmental disabilities began in 2005. She has extensive experience in residential and day program settings, case management, and adapted physical activities.
Betty Geer became Research Center Director for The Resource Exchange in Colorado Springs in September 2016. Her background includes more than 30 years cumulative experience in a broad range of fields, including public health research, nursing, graphic design, economic development, and architecture. She holds five degrees from the University of Colorado: Bachelor of Fine Art, Bachelor of Science in Nursing, Master of Science in Nursing, Master of Architecture, and Doctor of Nursing Practice. Dr. Geer also completed a Postdoctoral LEND Fellowship at JFK Partners at the University of Colorado, Anschutz Medical Campus. She is currently PI for the Care Integration and Quality of Life study, the research portion of the collaborative project entitled Health Coordination for People with Intellectual and Developmental Disabilities (IDD).
Abstract: The health of parents with disabilities is not well understood. Existing research has used small, non-representative samples. The lack of research using national representative data has hindered advocacy and policy-making efforts. In the present study, we used nationally representative data to examine the prevalence rates of chronic physical health conditions among parents with disabilities and compared them to parents without disabilities. We analyzed pooled and linked data from the Medical Expenditure Panel Survey and the corresponding National Health Interview Survey. We examined age-adjusted health differences of US parents with and without disabilities. Outcome measures included obesity, arthritis, asthma, cancer, heart disease, diabetes, emphysema, high cholesterol, hypertension, and stroke. After controlling for covariates and adjusting for age, parents with disabilities had significantly higher odds of having each of the chronic conditions. Parents with disabilities also have significant higher odds of having 2 conditions, 3 conditions, and 4 or more conditions. Parents with disabilities have significantly poorer health than parents without disabilities.
Susan Parish, PhD, MSW is Dean of the Bouvé College of Health Sciences and Professor of Health Sciences at Northeastern University. Prior to joining Northeastern University, she was the inaugural Nancy Lurie Marks Endowed Professor of Disability Policy and Director of the Lurie Institute for Disability Policy at the Heller School for Social Policy and Management, at Brandeis University. Her research examines the health and financial well-being of children and adults with disabilities, and their caregiving families. Her work, supported by more than $12 million of external funding over the past decade, has resulted in more than 130 articles, book chapters, policy briefs and monographs, including more than 80 scholarly articles in peer-reviewed journals. She has won numerous national awards including the Padgett Early Career Achievement Award from the Society for Social Work and Research and the Research Matters! award from the Arc of the United States. She is a Fellow of the American Association of Intellectual & Developmental Disabilities and a Fellow of the Society for Social Work Research. She is a member of the National Academy on Social Insurance. A committed educator, Dr. Parish also won numerous awards for her teaching and mentorship at both the University of North Carolina-Chapel Hill and at Brandeis University.
Assessing pain in children with special needs presents unique challenges for school nurses, as no evidence-based or clinical standards to guide practices have been established for use in the school setting. Additionally, school nurse staffing has not kept pace with the growth in the population of children with special needs, which has increased by 60% since 2002. The aim of this study was to explore school nurses’ pain assessment practices for students with special needs. A cross-sectional study was conducted via the web. Participants/Subjects: Of 3,071 special needs school nurses invited, 27% participated (n = 825). STATA13 was used to analyze descriptive statistics, while content analysis was performed in NVIVO 10. The majority of participants assessed pain in students with special needs using objective assessments (97.34%) and consultations with teachers (91.09%) and parents (88.64%). School nurses utilize pain assessment methods used previously in other practice areas, and rated pain assessment practices at the low benchmark of adequate. Overall, school nurses assess pain by selecting approaches that are best matched to the abilities of the student with special needs. When assessing students with special needs, nurses should utilize objective clinical assessments, teacher consultations, and parent input scales. In addition to continuing education, policies facilitating lower nurse-to-student ratios are needed to improve pain assessment practices in the school setting. Research to understand the perspectives of nurses, teachers, parents, and students is needed to support the creation of evidence-based policies and procedures.
When people think about their later years, they usually imagine a life freed from work or career commitments. They hope, too, that this new freedom will allow them to give their full attention to family, friends, and the activities they feel most passionate about. Making this dream a reality, however, requires health and independence, which in turn require a renewed commitment to staying healthy in general and to maintaining that health through exercise.
The good news, though, is that exercise confers all the same benefits to seniors that it does to those earlier in life, including increased longevity, improved mental clarity, a boost in energy, and greater strength to meet the physical demands of daily living. This is true even if you don’t start exercising until your later years. And while older people tend to become more sedentary as retirement and the challenges of old age restrict their activities, that doesn’t mean that you can’t make a reasonable course of exercise a part of your life or the life of a loved one.
With that in mind, here is everything you need to know about keeping an active lifestyle well into your senior years.
Tamar Heller, RRTCDD director, gave testimony before the United States Senate Special Committee on Aging on October 25, 2017. Her testimony addressed a number of issues facing older adults with intellectual and developmental disabilities including changes in health and health promotion, support for family caregivers, and retirement options. Download Full Testimony.
While there are many introductions to disability and disability studies, most presume an advanced academic knowledge of a range of subjects. Beginning with Disability is the first introductory primer for disability studies aimed at first year students in two- and four-year colleges. This volume of essays across disciplines—including education, sociology, communications, psychology, social sciences, and humanities—features accessible, readable, and relatively short chapters that do not require specialized knowledge.
Lennard Davis, along with a team of consulting editors, has compiled a number of blogs, vlogs, and other videos to make the materials more relatable and vivid to students. “Subject to Debate” boxes spotlight short pro and con pieces on controversial subjects that can be debated in class or act as prompts for assignments.
XCEL is designed to give quick tips in an entertaining way to reception/support staff who interact with people with developmental disabilities in healthcare settings. It comprises of a 7 minute animated video, a fact sheet, and highlights other resources that are helpful.
On September 24, 2017, the Disability Visibility Project hosted a Twitter chat on the future of disability studies with guest hosts Lisa Diedrich, Anjali J. Forber-Pratt, Angel Miles, Adam P. Newman, Hailee Yoshizaki-Gibbons. Questions listed at the top.