Health care expenditures of overweight and obese U.S. adults with intellectual and developmental disabilities

Henan Lia,a, Glenn Fujiura,b, Sandra Magaña,c, Susan Parish,d

a Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University, USA

b Department of Disability and Human Development, The University of Illinois at Chicago, USA

c Steve Hicks School of Social Work, University of Texas at Austin, USA

d Bouvé College of Health Sciences, Northeastern University, USA

A B S T R A C T

Background: U.S. adults with intellectual and developmental disabilities (IDD) have poorer health status and greater risks for being overweight and obese, which are major drivers of health care expenditures in the general population. Health care expenditures and IDD have not been studied using nationally representative samples, and the impact of overweight and obesity have not been examined. Aim: Using nationally representative data, we aimed to compare the health care expenditures of not-overweight, overweight and obese U.S. adults with IDD, and calculate model-adjusted expenditures. Methods and procedures: Pooled data from the 2002–2011 Medical Expenditure Panel Survey linked to National Health Interview Survey (n=1224) were analyzed. Two-part model regressions were conducted, with covariates being year of survey, age, sex, race/ethnicity, household income status, geographical region, urban/rural, marital status, insurance coverage, perceived health status, and perceived mental health status. Outcomes and results: Overall, obese adults with intellectual and developmental disabilities had higher expenditures than their non-obese peers. Being obese was associated with an estimated additional $2516 in mean expenditures and $1200 in median expenditures compared with the reference group, who were neither overweight nor obese. Conclusions and implications: Obesity is an important predictor of higher health care costs among community-living adults with IDD Finding effective strategies and interventions to address obesity in this population has great financial and policy significance.

At the intersection of chronic disease, disability and health services research: A scoping literature review

https://doi.org/10.1016/j.dhjo.2017.12.012

Abstract

Background

There is a concerted effort underway to evaluate and reform our nation’s approach to the health of people with ongoing or elevated needs for care, particularly persons with chronic conditions and/or disabilities.

Objective

This literature review characterizes the current state of knowledge on the measurement of chronic disease and disability in population-based health services research on working age adults (age 18-64).

Methods

Scoping review methods were used to scan the health services research literature published since the year 2000, including medline, psycINFO and manual searches. The guiding question was: “How are chronic conditions and disability defined and measured in studies of healthcare access, quality, utilization or cost?”

Results

Fifty-five studies met the stated inclusion criteria. Chronic conditions were variously defined by brief lists of conditions, broader criteria-based lists, two or more (multiple) chronic conditions, or other constructs. Disability was generally assessed through ADLs/IADLs, functional limitations, activity limitations or program eligibility. A smaller subset of studies used information from both domains to identify a study population or to stratify it by subgroup.

Conclusions

There remains a divide in this literature between studies that rely upon diagnostically-oriented measures and studies that instead rely on functional, activity or other constructs of disability to identify the population of interest. This leads to wide ranging differences in population prevalence and outcome estimates. However, there is also a growing effort to develop methods that account for the overlap between chronic disease and disability and to “segment” this heterogeneous population into policy or practice relevant subgroups.

  • a The Heller School for Social Policy and Management, Brandeis University, Waltham, MA, United States
  • b National Institutes of Health, Clinical Research Center, Rehabilitation Medicine Department, Bethesda, MD, United States
  • c John Hopkins Bloomberg School of Public Health, Baltimore, MD, United States
  • d Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, United States
  • e Rollins School of Public Health, Emory University, GA, United States
  • f University of Pittsburgh School of Medicine, Pittsburgh, PA, United States
  • g University of Kansas, Lawrence, KS, United States

The Guide to Community Preventive Services and Disability Inclusion

Source: The Guide to Community Preventive Services and Disability Inclusion – ScienceDirect

Why is this important?

  • One in five adults in the United States have some type of disability (CDC, 2017).
  • Adults with disabilities are more likely to be obese, smoke, have high blood pressure, and be physically inactive than adults without disabilities(CDC, 2017).
  • Increased risk for medical conditions, such as heart disease, stroke, diabetes, and some cancers are also more common among adults with disabilities (CDC, 2017).

Introduction

Approximately 40 million people in the U.S. identify as having a serious disability, and people with disabilities experience many health disparitiescompared with the general population. The Guide to Community Preventive Services (The Community Guide) identifies evidence-based programs and policies recommended by the Community Preventive Services Task Force (Task Force) to promote health and prevent disease. The Community Guide was assessed to answer the questions: are Community Guide public health intervention recommendations applicable to people with disabilities, and are adaptations required?

Methods

An assessment of 91 recommendations from The Community Guide was conducted for 15 health topics by qualitative analysis involving three data approaches: an integrative literature review (years 1980–2011), key informant interviews, and focus group discussion during 2011.

Results

Twenty-six recommended interventions would not need any adaptation to be of benefit to people with disabilities. Forty-one recommended interventions could benefit from adaptations in communication and technology; 33 could benefit from training adaptations; 31 from physical accessibility adaptations; and 16 could benefit from other adaptations, such as written policy changes and creation of peer support networks. Thirty-eight recommended interventions could benefit from one or more adaptations to enhance disability inclusion.

Conclusions

As public health and healthcare systems implement Task Force recommendations, identifying and addressing barriers to full participation for people with disabilities is important so that interventions reach the entire population. With appropriate adaptations, implementation of recommendations from The Community Guide could be successfully expanded to address the needs of people with disabilities.

I Use a Wheelchair. And Yes, I’m Your Doctor. – The New York Times

When I was in the third year of my medical residency, I was asked to evaluate a new state-of-the-art, fully accessible exam table that would be used in doctors’ offices to better provide care for patients with mobility-related disabilities. The table could go as low as 18 inches off the ground to enable easier transfers for wheelchair users and had extra rails and grips to provide support for patients with impaired balance. I was to assess this equipment as a “user expert.” Although the table was designed

Source: I Use a Wheelchair. And Yes, I’m Your Doctor. – The New York Times

When I was in the third year of my medical residency, I was asked to evaluate a new state-of-the-art, fully accessible exam table that would be used in doctors’ offices to better provide care for patients with mobility-related disabilities. The table could go as low as 18 inches off the ground to enable easier transfers for wheelchair users and had extra rails and grips to provide support for patients with impaired balance.

I was to assess this equipment as a “user expert.” Although the table was designed to accommodate patients with disabilities, I rolled up to it to evaluate it from the perspective of a physician. “Do you want my opinion as a patient, or as a doctor?” I asked the surprised representatives from the medical equipment company.

I have been a wheelchair user since early childhood, when I sustained a spinal cord injury in a farming accident. I am now a practicing physician in the field of rehabilitation and sports medicine.

In my busy outpatient clinical practice, I witness the spectrum of patients’ reactions when they find out that their doctor is, herself, disabled. Typically those first few seconds after entering an exam room — before the patient’s guard goes up — are the most informative.

I find that these reactions are somewhat generational. Younger patients, having grown up amid a growing awareness of disability in society, typically do not react at all. They have clearly encountered empowered people with disabilities working in various professional roles. Older patients often seem confused, curious or, in rare circumstances, dismayed.

Several months ago, I wheeled into the room of an elderly woman. She looked at me, placed her hand on mine and, with a kind look asked, “Are you an invalid?” More recently, a jovial older man exclaimed, “You’ve got to be kidding me!” A few times, patients will hesitate to tell me their concerns, indicating “Well, doc, I feel bad complaining about this to you, when clearly your problems are bigger than mine.”

Several years ago, while in my residency, I was in line at our hospital cafeteria. Although my badge reading “Dr. Blauwet” and stethoscope were clearly visible, a man next to me in line said: “You look like you are doing pretty well. When are you going to be discharged?” Clearly, my wheelchair was the only thing he saw. Moreover, he equated my wheelchair with illness, rather than empowerment.

Over the years, I’ve thought a lot about situations like these, and I do not believe they come so much from direct prejudice as from people’s lack of experience with doctors who are also wheelchair users. A recent study revealed that less than 3 percent of medical school trainees are people with disabilities, and of these, only a small proportion are individuals with mobility impairment. How can we expect our patients or colleagues to know about the perspectives and needs of physicians with disabilities when we remain invisible to them? The reason for this underrepresentation is complicated. Most physicians with mobility disabilities will tell you that the problem is not that we lack the ability to do our job competently. As with many other educated, skilled professionals, we know how to choose a path that suits our talents and abilities. Reasonable accommodations, such as the use of standing wheelchairs in the operating room, give us the access we need to do our work. The larger barrier to entry for prospective doctors with disabilities, however, is bias, both overt and hidden.

A colleague who is quadriplegic recounted a medical school admissions officer telling him, “I’m afraid that you will not meet the technical standards for admission.” Although steeped in bias and probably illegal, this response was at least more direct than the more common form of discrimination where otherwise strong applicants with disabilities simply do not receive an interview or a call back. As our peers are accepted into prestigious schools and academic positions, we sit on the sidelines, left to question whether the fault lies with us or the system. Many give up their aspirations of a career in medicine altogether, electing to pursue work more “traditionally suited” for people with disabilities. Others lose sleep, questioning whether it was the right decision to disclose their disability in the application materials.

Anyone can enter, at any time, the minority group of people with disabilities. The most common cause of new, adult-onset disability is — simply put — aging. Physicians are often reluctant to disclose new-onset or progressive disability (like loss of hearing or vision, or reduced mobility) because of the fear of being stigmatized; medicine, after all, is still dominated by the prototype of physical prowess.

Dr. Lisa Iezzoni, a professor of medicine at Harvard Medical School, has been an important mentor to me for many years. She recounted her experience as a medical student at Harvard in the early 1980s, a decade before the passage of the Americans With Disabilities Act. In her first year at the medical school, after experiencing some physical and sensory symptoms, she was given a diagnosis of multiple sclerosis. Late in her third year, after a fall, she started using a cane, but her aspirations to pursue an internal medicine residency remained, despite the overt discouragement she received. At a student-faculty dinner, an influential professor told her: “There are too many doctors in the country right now for us to worry about training a handicapped physician. If that means someone gets left by the wayside, that’s too bad.”

The medical school refused to write a letter of recommendation for her residency application, so she could not pursue the training required for clinical practice. She pursued health policy research instead and became the first female professor of medicine at the Beth Israel Deaconess Medical Center and now directs the Mongan Institute Health Policy Center at Massachusetts General Hospital. Despite having had an extraordinarily successful career, she sometimes wonders what could have been if she had been able to practice medicine.

My experience, more than two decades later, was vastly different. As an undergraduate at the University of Arizona, I became interested in applying to medical school. I investigated the application process and took coursework that would set me up for success. I studied, networked, did internships and engaged in various activities that would strengthen my application. Additionally, throughout this time, I nurtured my alter ego as an athlete, pursuing the sport of wheelchair racing, and ultimately represented the United States in three Paralympic Games.

In the fall of 2002, I applied to medical school, received interviews at several prestigious universities and was accepted to the Stanford University School of Medicine. Throughout this process, I never once feared that my disability would get in the way of success. I could focus on my academic performance rather than expending mental energy around concerns of hidden bias.

As a member of the “A.D.A. generation,” I was blissfully ignorant that my visible disability could, in fact, derail my success. I simply assumed that I would be evaluated on merit, like my peers. (I also realized that my athletic success perhaps made me seem more “able.”) I now understand the privilege of that perspective. I cannot completely separate my disability identity from my professional role.

People with disabilities often express fear or dissatisfaction with our health care system because they face poor access and discriminatory attitudes. This must change. Perhaps having more doctors with disabilities is one solution. As with any underrepresented group in medicine, professional diversity should reflect our population’s diversity. That simple change can bring awareness, empathy and a shared experience that ultimately makes all of us better.

Cheri A. Blauwet (@CheriBlauwetMD), an assistant professor at Harvard Medical School, is a seven-time Paralympic medalist and serves on the board of the United States Olympic Committee.

Disability is a weekly series of essays, art and opinion by and about people living with disabilities.

The entire series can be found here. To reach the editors or submit an essay for consideration, write opinionator@nytimes.com and include “Disability” in the subject field. Follow The New York Times Opinion section on Facebook and Twitter (@NYTOpinion), and sign up for the Opinion Today newsletter.

Disability Healthcare Training – Nisonger Center

Access two courses that are approved for continuing education by the Centers for Disease Control and Prevention for physicians, nurses, certified health education specialists and other health professionals.

Source: Disability Healthcare Training – Nisonger Center

The Ohio Disability and Health Program has developed online training modules that are designed to increase the capacity of health care providers to provide quality healthcare for persons with disabilities. The two courses are approved for continuing education by the Centers for Disease Control and Prevention for health professionals in multiple areas. For more information, please visit:

http://nisonger.osu.edu/education-training/ohio-disability-health-program/disability-healthcare-training/

Please contact Ann Robinson (contact information below) for further information.

Abused And Betrayed: People With Intellectual Disabilities And An Epidemic Of Sexual Assault : NPR

Source: Abused And Betrayed: People With Intellectual Disabilities And An Epidemic Of Sexual Assault : NPR

NPR Special Series: Abused and Betrayed: People with Intellectual Disabilities and an Epidemic of Sexual Assault
https://www.npr.org/series/575502633/abused-and-betrayed
At a moment of reckoning in the United States about sexual harassment and sexual assault, a yearlong NPR investigation finds that there’s little recognition of a group of Americans that is one of the most at risk: adults with intellectual disabilities. The series starts on Monday, January 8 and runs through January 18th.

Disability Stigma and Your Patients | Rehabilitation Research and Training Center on Aging With Physical Disabilities

Source: Disability Stigma and Your Patients | Rehabilitation Research and Training Center on Aging With Physical Disabilities

Download Document on Aging Stigma

For people with disabilities, stigma can be a major barrier to participation. Stigmatizing attitudes about disabilities can also affect relationships between patients and providers. However, health care providers can be allies with their patients and help reduce the impact of stigma.

What Is Disability Stigma?

The word stigma comes from the Greek word for “mark.” Generally, stigma is a negative set of beliefs about people with specific characteristics. For example, ethnic or sexual minorities, or people with unusual facial appearance may encounter stigma.

People with disabilities have been stigmatized throughout history. In many cultures, disability has been associated with curses, disease, dependence, and helplessness. Disability stigma can play out in a number of ways, including:

  • Social Avoidance – People with disabilities may be left out of social activities, or they may find that friends become more distant after they develop a disability. People may be hesitant to make eye contact or start a conversation with someone who has a visible disability.
  • Stereotyping – People with disabilities may be presumed to be helpless, unable to care for themselves, or unable to make their own decisions. People with one disability, such as a speech impairment, may be presumed to have other disabilities they don’t have, such as an intellectual disability.
  • Discrimination – People with disabilities may be denied jobs, housing, or other opportunities due to false assumptions or stereotypes about disabilities. This still occurs today, despite disability rights laws such as the Americans with Disabilities Act (ADA).
  • Condescension – People with disabilities may be coddled or over-protected due to perceptions of their helplessness.
  • Blaming – People may be blamed for their disability, or accused of using their disability to gain unfair benefits.
  • Internalization – People with disabilities may themselves adopt negative beliefs about their disability and feel ashamed or embarrassed about it.
  • Hate Crimes and Violence – People with disabilities may be targeted in hate crimes. They are more likely to be victims of physical or sexual violence than people without disabilities.

How Can Disability Stigma Affect Your Relationship with Your Patients?

People with disabilities may manage their condition in ways that guard against being stigmatized. In addition, people with disabilities may be especially sensitive to signs of possible stigmatizing from their providers.

Some issues related to stigma that may arise include:

  • Concealment – If possible, some people may choose to conceal their disability in public in order to minimize stigma. As a result, they may be reluctant to use assistive devices, such as mobility devices or hearing aids, or to tell others about their diagnosis. They may also forgo some medical services.
  • Disability Pride – On the other hand, some people express pride and a positive identity around their disability as a way to counteract stigma. These individuals may wish to join groups of people who share their disability, where it is no longer stigmatized. They may also opt against medical treatment intended to “cure” their disability because they have developed a positive identity around the condition.
  • Social Integration – Stigma is social in nature and may interfere with social integration.  In contrast to “concealment,” people may choose to make their disability more evident in order to improve their options for social participation. For example, a person with a mobility impairment may choose to use a wheelchair instead of a walker if the wheelchair would allow him or her to travel to work or family activities without fatigue.
  • Need for Respect – Your patients may be especially sensitive to your attitude about their disability. Building a collaborative partnership with your patient built on trust and respect communicates your support for the patient as a whole person.

Tips for Respectful, Stigma-free Interactions

Establish Respectful Communication

  • Do speak directly to your patient, even if he or she has a companion or interpreter in the room. Make eye contact with the patient, not the companion.
  • Do use ordinary language. It’s OK to say “see you later” to a patient who is blind, or to talk about going for a walk with a patient who is non-ambulatory. Using ordinary expressions signals that you see your patients as full members of their community.
  • Do ask patients with speech impairments how they prefer to communicate. Some patients may write or type to communicate if they have impaired speech, for example, or they may have established yes/no signals.
  • Do use age appropriate language and tone with adult patients, and assume that a patient with a disability will understand basic instructions unless you have a clear indication otherwise.
  • Don’t interrupt or rush a patient who communicates slowly because of a speech impairment.
  • Don’t guess what a patient is saying. If you don’t understand the communication, ask for clarification.

Respect Patient Privacy and Autonomy

  • Do provide written materials in an electronic format when possible, for patients with visual impairments and those who have difficulty with handwriting or manipulating print materials. A patient can independently fill out an electronic form in advance of an appointment. Provide medical record information, treatment plans, and instructions in a digital format when requested.
  • Do ensure that your office building and toilets are accessible to people using mobility aids such as walkers and wheelchairs, so that they can navigate the space independently.
  • Do ensure that your office practice is accessible.  For example, your patients with disabilities should be able to get weighed, use the exam tables, and access radiological exams.
  • Do ask a patient the best way to provide physical assistance if it is needed.
  • Don’t touch, pull or grab a patient’s body without asking for consent. For patients with some physical conditions, inappropriate touch can cause pain or interfere with balance. For others, unwanted touch can cause anxiety. Asking for consent respects the patient’s bodily autonomy.
  • Don’t handle a patient’s mobility device without consent.

Respect Disability Identity and Culture

  • Do respect a patient’s choice to downplay or highlight their disability in particular settings.
  • Do introduce your patients to disability support groups. Organizations like the National Multiple Sclerosis Society(link is external) or the United Spinal Association may have local chapters in your area. Your local independent living center may also have resources.
  • Don’t use negative words to describe disabilities. Words such as “tragedy” or “suffering” can convey a stigmatizing view of disability to your patients.  Patients are not “confined to wheel chairs,” but rather use wheelchairs.
  • Don’t fall into the trap of “golden rule thinking.” This is imagining how you would personally feel with a disability as a way to infer how your patients feel. Disability is a complex experience that differs from person to person and changes over time. Listen to your patients to discover how you can be their best ally.

Additional Resources

Society for Disability Studies: www.disstudies.org(link is external)

Disability law and accommodations in health care:  http://adata.org(link is external)

List of national disability advocacy and support organizations: www.ncdj.org/resources/organizations/(link is external)

Alliance for Disability in Health Care Education: www.adhce.org(link is external)

References

Eddey, G. E. & Robey, K. L. (2005). Considering the culture of disability in cultural competence education. Academic Medicine, 80, 706-712.

Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster.

Morris, M. A., Yorkston, K. & Clayman, M. L. (2014). Improving communication in the primary care setting: Perspectives of patients with speech disabilities. Patient, 7, 397-401.

Olkin, R. (1999). What Psychotherapists Should Know About Disability. New York: Guilford Press.

Authorship:

Disability Stigma and Your Patients” was developed by Arielle Silverman, PhD, and published by the University of Washington Aging RRTC. Content is based on research evidence and/or professional consensus.

Disclaimer:

This information is not meant to replace the advice from a medical professional. You should consult your health care provider regarding specific medical concerns or treatment.

Suggested Attribution:

University of Washington. (2016). Disability Stigma and Your Patients [Factsheet]. Aging Well with a Physical Disability Factsheet Series. Healthy Aging & Physical Disability RRTC, http://agerrtc.washington.edu

Health Care for People with Intellectual and Developmental Disabilities across the Lifespan

Source: Health Care for People with Intellectual and Developmental | I. Leslie Rubin | Springer

  • Offers an unique lifespan approach on Health Care for People with Intellectual and Developmental Disabilities
  • Addresses the Clinical as well as the Systems of Delivery of Health Care
  • Provides a practical approach to dealing with health and well-being of people with intellectual and developmental disabilities

Health Promotion in Community Based Organizations: Understanding the Needs and Capacity
Jasmina Sisirak, PhD, MPH and Beth Marks, PhD, RN, FAAN
May 17th, 2018

Webinar 5: Health Promotion in Community Based Organizations: Understanding the Needs and Capacity

3:00 pm, Eastern Standard Time

Register for Webinar

Presenters: Jasmina Sisirak, PhD, MPH (jsisirak@uic.edu) and Beth Marks, PhD, RN (bmarks1@uic.edu)

Abstract: Focusing only on motivating individuals with intellectual disabilities (ID) to change their behaviors oftentimes results in many people returning to unhealthy behaviors because their environment does not recognize the influence and importance of organizational attitudes, policy, and “corporate cultures” on individual behavior change. We evaluated organizational health promotion programs and services, resources, organizational culture and employee’s perception of knowledge, skills and attitudes in over 70 community based organizations (CBOs) in seven states. We will share the results of our findings and recommendations for improving health promotion capacity within CBOs.

Presenter bios:

Jasmina Sisirak, PhD, MPH is an Associate Director of Training and Dissemination at the RRTCDD and the Research Assistant Professor at the Department of Disability and Human Development, University of Illinois at Chicago (UIC). Jasmina received her PhD in Public Health with emphasis in Epidemiology and Community Health. Her research interests consist of nutrition, health literacy, health promotion and curriculum development for people with intellectual and developmental disabilities and their caregivers. Jasmina is also Associate Director of the HealthMatters Program.

Beth Marks, RN, PhD, FAAN is a Research Associate Professor at the Department of Disability and Human Development, UIC and the Associate Director for Research in the RRTCDD. Her research interests include the empowerment and advancement of persons with disabilities through health promotion, health advocacy, and primary health care. She has published numerous articles and books related to health promotion, health advocacy, and primary health care for people with disabilities. Dr. Marks is also the Director of the HealthMatters Program.

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 (hsieh@uic.edu) and Haleigh Scott, PhD (hscott8@uic.edu)

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 (hscott8@uic.edu), 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.

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