Anxiety and Depression in Adults with IDD: Prevalence, Risk Factors, and Applications
Kelly Hsieh, PhD and Haleigh Scott, PhD
April 19th, 2018

Webinar 4: Anxiety and Depression in Adults with IDD: Prevalence, Risk Factors, and Applications

3:00 pm, Eastern Standard Time

Register for Webinar

Presenters: Kelly Hsieh, PhD ( and Haleigh Scott, PhD (

Abstract: Depression and anxiety are the most frequent mental disorders in adults with intellectual and developmental disabilities (IDD). People with IDD may experience more life events due to different living circumstances and limited coping skills. Dr. Hsieh will present current research on risk factors of depression and anxiety and Dr. Scott will provide clinical strategies to help adults with IDD to manage depression and anxiety by improving coping skills to reduce stressors.

Presenter bios:

Kelly Hsieh, PhD is a Research Associate Professor in the Department of Disability and Human Development, and Associate Director of Evaluation and Statistics for the RRTC on Developmental Disabilities and Health. Her research interests explore the relationship between health risk behaviors and health outcomes including obesity, falls, cardiovascular disease, mental health, and dementia across lifespan among individuals with intellectual and developmental disabilities using epidemiological approach. She is also interested in investigating efficacy of interventions to improve well-being and quality of life for adults with developmental disabilities.

Haleigh Scott, PhD (, is a Postdoctoral Fellow at the University of Illinois at Chicago in the Department of Disability and Human Development.  She is a graduate of The Ohio State University’s Intellectual and Developmental Disability Psychology program. Haleigh’s research focuses on the well-being of people with intellectual and developmental disabilities (IDD). Specifically, she is interested in how psychosocial factors influence mental and physical health outcomes and measurement issues in obtaining health related information from people with intellectual and developmental disabilities.

Partnering to Transform Healthcare with People with IDD
Tamar Heller, PhD and Sarah Ailey, PhD, RN, CDDN, APHN-BC
March 15th, 2018

Webinar 3: Partnering to Transform Healthcare with People with Intellectual and Developmental Disabilities

Thursday, March 15, 2018

Play recording (1 hr 1 min)

Handout: Tackling Health Disparities

Video: Daphne Ron: Good and Bad Experiences with Health Care

Presenters: Tamar Heller, PhD ( and Sarah Ailey, PhD, RN, CDDN, APHN-BC (

Abstract: Disparities in treatment of people with intellectual disability in health care leads to increased morbidity and mortality and costs, and decreased quality of life. Proactive work for practical, implementable solutions is needed, as well as consensus and action plans on best practices and research and policy agendas. The Partnering to Transform Healthcare with People with Disabilities Conference provided an opportunity for self-advocates across disability communities (intellectual, physical, sensory and mental) to partner with national experts (providers and policy makers, executives, insurers, regulators and others) to synthesize current innovations and improvement efforts in health care with people with disabilities, reach consensus on best practices, propose needed research and policies, and develop action plans. We will report findings from the conference regarding currently implementable solutions, consensus on best practices and research, and policy agenda recommendations for people with intellectual disability. We invite participants to join the dialogue.

Presenter bios:

Tamar Heller, PhD, Distinguished Professor, heads the Department of Disability and Human Development, University of Illinois at Chicago (UIC) and its University Center of Excellence in Developmental Disabilities. She also directs the Rehabilitation Research and Training Center (RRTC) on Developmental Disabilities and Health, and is Co-PI of the RRTC on Community Living Disability Policy and the Family Support RTC. Her research focuses on health and long-term services and supports for individuals with disabilities and their families. She was President of the Association of University Centers on Disabilities (AUCD) board, and co-founder of the Sibling Leadership Network. Her awards include the 2009 Arc of Illinois Autism Ally for Public Policy Award; the 2008 Lifetime Research Achievement Award, International Association for the Scientific Study of Intellectual Disabilities, Interest Group on Aging; the 2009 Community Support Services Community Partner Award, the 2010 College of Applied Health Sciences, UIC Outstanding Researcher Award, and the AUCD 2012 International Award.

Sarah Ailey, PhD, RN, CDDN, APHN-BC, is a nurse researcher and clinician who works to improve the health and health care of people with disabilities, concentrating on intellectual disabilities. Her research and scholarly practice are concentrated on translating research to community and inpatient hospital settings to improve the lives of individuals with intellectual disabilities. She is investigating the effect of the Steps to Effective Problem-solving (STEPS) program in group homes, funded by an R01 grant from the Eunice Kennedy Shriver Institute. Ailey has been a member of the Americans with Disabilities Act Task Force at Rush University Medical Center since 2003. She also co-chairs (with Robyn Hart) the Adults with Intellectual and Developmental Disabilities Committee at Rush since 2007; the collective work at Rush to improve patient care for this population has been described as the “gold standard” in The Hospitalist, a publication of the American College of Physicians.

Beyond Care Coordination: Cross-Systems Care Integration for Adults with IDD
Betty Geer, DNP, RN, CPNP · Brystal Karber, BA · Nichole Guerra, DBA
February 15th, 2018

RRTCDD and The Arc 2018 Health and Wellness Webinar Series

Webinar 2: Beyond Care Coordination: Cross-Systems Care Integration for Adults with Intellectual and Developmental Disabilities

3:00 pm, Eastern Standard Time

PLAY RECORDING (1 hr 6 min)

Download Presentation Slides


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.

Presenter bios:

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).

Brystal Karber, Bachelor of Arts in Cultural Anthropology and a Teaching Assistant at University of Colorado.

Health of Parents with Disabilities
Susan Parish, PhD, MSW
January, 18th, 2018

Webinar 1: Health of Parents with Disabilities

Play recording (57 min)

View Health of Parents with Disabilities Presentation


Presenter: Susan Parish, PhD, MSW (

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.

Presenter bio:

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.

‘It’s Not Easy’: School Nurse Pain Assessment Practices for Students with Special Needs

Brenna L. Quinn PhD, RN, NCSN

Assistant Professor, Susan & Alan Solomont School of Nursing, Email:


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.

PMID: 27105572; DOI:10.1016/j.pmn.2016.01.005

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace

American Journal of Nursing

Blind Spot: Understanding a disabled son’s vulnerability as a state of grace by Diane Stonecipher, BSN, RN

“His IQ may have been devastated, but his EQ has not. He has lived 25 years on this earth and his experiences are valuable and visceral to him.”

Diane Stonecipher is a nurse living and working in Texas. Contact author: 

National Council for Aging Care’s Comprehensive Guide on Exercising for Seniors

Comprehensive Guide on Exercising for Seniors

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.

Congressional Testimony on Aging – Tamar Heller

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.

For a video of the entire hearing titled “Working and Aging with Disabilities: From School to Retirement” see the following link:

Beginning with Disability: A Primer (Paperback) – Routledge

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.

Source: Beginning with Disability: A Primer (Paperback) – Routledge

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 Training

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.


Source: Florida Center for Inclusive Communities (FCIC)

XCEL Training

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