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.
Source: LiveWell RERC
Leighanne Davis, B.S.
Ensuring website optimization and ease of use are goals of any developer. This holds especially true for organizations disseminating a lot of information to a variety of users from different backgrounds and with different ability levels. Broken links or missing alt text can be frustrating for some people with accessibility challenges. These also detract from the user experience. To mitigate these website errors or accidental exclusions, developers and even laymen can use various online resources to check the efficiency and ease of use of websites.
Download Web+Accessibility+Testing Report for resources and broad information on services offered and how these tools can also be used as a basic accessibility test.
• Programs for website testing
• Locations to download / use each program
Early Childhood Technical Assistance Center: Improving Systems, Practices and Outcomes for Young Children with Disabilities and their Families
Most recent additions to this page:
National Child Traumatic Stress Network (2017) – established to improve access to care, treatment, and services for traumatized children and adolescents exposed to traumatic events. This resource includes descriptions of each type of trauma and evidence-based treatments that work.
Caring for Children in a Disaster (2017) – This collection of resources from the Centers for Disease Control and Prevention offers simple steps to protect children in emergency situations and help meet their needs during and after a disaster.
As states transform their health systems many are turning to Community Health Workers (CHWs) to tackle some of the most challenging aspects of health improvement, such as facilitating care coordination, enhancing access to community-based services, and addressing social determinants of health.
While state definitions vary, CHWs are typically frontline workers who are trusted members of and/or have a unique and intimate understanding of the communities they serve. This map highlights state activity to integrate CHWs into evolving health care systems in key areas such as financing, education and training, certification, and state definitions, roles and scope of practice. The map includes enacted state CHW legislation and provides links to state CHW associations and other leading organizations working on CHW issues in states.
Date Written: 2017
While big data offers society many potential benefits, it also comes with serious risks. This Essay focuses on the concern that big data will lead to increased employment discrimination. It develops the novel argument that the Americans with Disabilities Act (ADA) should be amended in response to the big data phenomenon in order to protect individuals who are perceived as likely to develop physical or mental impairments in the future. Employers can obtain medical data about employees not only through the traditional means of medical examinations and inquiries, but also through the non-traditional mechanisms of social media, wellness programs, and data brokers. Information about workers’ habits, behaviors, or attributes that is derived from big data can be used to create profiles of undesirable employees. It can also be used to exclude healthy and qualified individuals whom employers regard as vulnerable to future medical problems. The ADA, which now protects only individuals with current or past disabilities and those who are perceived as having existing impairments, can no longer ignore the discrimination threats posed by predictive health data. The Essay analyzes these risks and propose a detailed statutory response to them.
Hoffman, Sharona, Big Data and the Americans with Disabilities Act (2017). 68 Hastings Law Journal 777 (2017); Case Legal Studies Research Paper No. 2016-33. Available at SSRN: https://ssrn.com/abstract=2841431
Date: August 28, 2017
Source: Oregon State University
Summary: Experiencing stigma, the severity of a disability and a person’s age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research shows.
Experiencing stigma, the severity of a disability and a person’s age and income level help determine whether someone with an impairment considers themselves to be a person with a disability, and experiencing stigma predicts whether those individuals will ultimately develop disability pride, new research from Oregon State University shows.
“Roughly 15 percent of the world’s population has some kind of disability but just a fraction of those people actually identify themselves as people with disabilities. Disability identity is a critical step in accepting a disability and helps to reduce the stigma surrounding the label,” said Kathleen Bogart, an assistant professor of psychology in the College of Liberal Arts at Oregon State University.
Those who self-identify are also more likely to develop pride in their disability, a shift in thinking that can help build resilience and change public attitudes about the “disabled” label, said Bogart, an expert on ableism, or prejudice about disabilities, whose research focuses on the psychosocial implications of disabilities.
“The challenge with disability as a label is that it’s so mired in stigma that people don’t want that label,” she said. “Can we reduce the stigma and reframe the label as a neutral label that is just useful as a category, like male or female? Or taking it even further, can we shift the label to the point where people have pride in that label?”
Bogart explored issues around disability self-identification and disability pride in two new studies published recently in the journal Rehabilitation Psychology.
The first study examined who is most likely to self-identify as disabled. For the study, about 700 people over age 18 completed an online survey that asked them to identify health conditions they had by checking boxes, or if their condition was not listed, filling in a box. Among the most common impairments were allergies, anxiety, depression, migraines, back injury or pain, attention-deficit/hyperactivity disorder, respiratory disease, hypertension and chronic pain.
Participants also were asked to rate characteristics of their health condition, such as whether it affects daily life, how often it causes physical pain and how often it is noticeable to other people. In addition, they completed a questionnaire about whether they experienced stigma and discrimination because of their condition. They were also asked whether they identify as a person with a disability. Only 12 percent of people with a health condition agreed or strongly agreed that they were a person with a disability.
The researchers found that experiencing stigma, along with severity of the impairment, were the biggest factors influencing whether someone with a disability identified that way.
“The finding regarding stigma was a really powerful one,” Bogart said. “It supports the idea that the concept of disability is primarily a social construct, developed by society’s reaction to that impairment. It’s not just the physical impairment. It’s the way people treat you and the way society builds an environment that does or does not include you.”
The study results suggested that severe impairments lead to greater stigma, which increased the likelihood that people self-identified as disabled.
In the second study, the researchers looked further at the role disability pride plays in overall wellbeing for people with disabilities. Developing pride in the disability — and rejecting the stigma of society on whole — shows promise as a way to protect against stigma and build self-esteem, Bogart said.
“Little is known about the good things that might come with embracing a disability identity,” Bogart said. “We believe developing pride may offer some protective effects for people with disabilities who experience stigma.”
Using the same set of more than 700 survey participants from the previous study, but looking at additional questions, the researchers analyzed factors that influence whether someone has pride in their disability. They found that disability pride tended to be more prevalent among those who experience stigma, those who have strong social support and people of color. They also found that people experiencing greater stigma seemed to lead to more pride, and greater pride was associated with greater self-esteem.
“Disability pride is still a rare thing,” Bogart said. “Most disabilities are invisible and people have to choose to identify with them. Many people hide their disabilities to avoid discrimination. But not identifying also perpetuates the stigma that disability is undesirable. Developing disability pride seems to reduce protect self-esteem against the negative effects of stigma. It’s a really valuable protection for people with disabilities.
“A logical next step for the research would be to develop interventions designed to boost disability pride among people with disabilities and at a policy level, with the goal of improving overall well-being and reducing stigma.”
Social support within the disability community could be bolstered through social groups and mentoring. At a policy level, political activism, media representation featuring disability pride and disability pride events may support pride development.
Co-authors of the self-identification study are Adena Rottenstein of Eastern Michigan University; Emily M. Lund of Boston University; and Lauren Bouchard of Purdue University. Rottenstein and Lund are also co-authors on the pride study. The research was supported by a research grant from the OSU College of Liberal Arts.
- Kathleen R. Bogart, Emily M. Lund, Adena Rottenstein. Disability Pride Protects Self-Esteem Through the Rejection-Identification Model.. Rehabilitation Psychology, 2017; DOI: 10.1037/rep0000166
Medication and supplement use in older people with and without intellectual disability: An observational, cross-sectional study
1 Faculty of Pharmacy, University of Ljubljana, Ljubljana, Slovenia, 2 School of Pharmacy and Pharmaceutical Sciences, Trinity College Dublin, Dublin, Ireland, 3 IDS-TILDA School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland, 4 Dean of the Faculty of Health Sciences, Trinity College Dublin, Dublin, Ireland, 5 School of Social Work, Temple University, Philadelphia, Pennsylvania, United States of America, 6 The Irish Longitudinal Study on Ageing (TILDA), Trinity College Dublin, Dublin, Ireland, 7 Trinity College Institute of Neuroscience (TCIN), Trinity College Dublin, Dublin, Ireland
Source: PLoS One. 2017 Sep 6;12(9):e0184390. doi: 10.1371/journal.pone.0184390. eCollection 2017.
Introduction Understanding the medication and supplement use of aging people is critical to ensuring that health service providers in primary care can optimise use of these agents. An increasing number of people with different levels of intellectual disability (ID) are living in the community and becoming for the first time substantial users of primary health care services. This, however, brings new challenges that need to be addressed at the primary health care level. We quantified the use of medicines and food supplements and described the associated patterns of morbidity in the two comparable cohorts of aging population with and without intellectual disability.
Method This research aligned participants of 50 years and over who lived in the community from two nationally representative cohorts of older people; those with ID from the Intellectual Disability Supplement (n = 238) and those without ID (n = 8,081) from the Irish Longitudinal Study on Ageing.
Results Data showed that both medication and supplement use in the two groups was prevalent but that those with ID received more of both medications and supplements (e.g. polypharmacy was 39.0% in ID vs. 18.1% in non-ID cohort). Moreover, based on an analysis of the therapeutic groups and medications used that treatment was more intense in the ID cohort (95.8 vs. 7.0 International Non-proprietary Names per 100 participants). Supplement use was almost twice as prevalent in the ID group but substantially less diverse with only 10 types of supplements reported. Morbidity was higher in the ID group and showed a higher prevalence of neurological and mental health disorders.
- assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities;
- translate the contributions of these findings to the greater dementia care agenda; and
- promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform.
NATIONAL RESEARCH SUMMIT ON CARE, SERVICES AND SUPPORTS FOR PERSONS WITH DEMENTIA AND THEIR CAREGIVERS: PRE-SUMMIT ACTIVITIES
National Task Group on Intellectual Disabilities and Dementia Practices — Caregiving and Program Research on Caregiving of Persons with Intellectual Disability and Dementia
PRE-SUMMIT PAPER: Caregiving and Intellectual and Developmental Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities
This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer’s Association. The purpose was threefold: (1) to assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities; (2) to translate the contributions of these findings to the greater dementia care agenda; and (3) to promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform. The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD. Considered were five major areas related to care and caregiving: (1) family caregiving interventions; (2) supportive care settings; (3) effects of diversity; (4) screening and early detection; and (5) bridging service networks. Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations. [PDF Version]
Source: The New York Times
It’s 2009, and I’m in Philadelphia to deliver a talk at a conference. During a long break, I decide to visit the Mutter Museum. I teach anatomy, and the Mutter houses a collection of so-called medical curiosities. I examine the wall of skulls, the cases full of skeletons, and go downstairs, where preserved specimens wait for inspection.
And there I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. Some extrude a bulging sac containing a section of the cord. These balloons make the fetuses appear as if they’re about to explode. This condition is called spina bifida.
This four-page resource provides health department staff with five action steps for the development and delivery of inclusive health promotion programs and activities. Each action step provides helpful resources and tools for local health departments to ensure all community members are engaged in health promotion activities. Click here to view the fact sheet.
The National Association of County and City Health Officials (NACCHO) works with local health departments to promote the inclusion and engagement of people with disabilities in all public health programs, products, outreach, and services.
NACCHO encourages health departments to include people with disabilities when creating and delivering health promotion activities. This fact sheet provides five action steps for local health officials to ensure that the development and delivery of health promotion programs and activities are inclusive and accessible.
NACCHO also recommends the Guidelines for Disability Inclusion in Physical Activity, Nutrition, and Obesity Programs and Policies Implementation Manual to inform disability inclusion in community health promotion strategies.
- People with Disabilities: Health Department Strategieshttp://bit.ly/2seoac8
- Guidelines for Disability Inclusion in Physical Activity, Nutrition, and Obesity Programs and Policies Implementation Manual http://bit.ly/2sJgUbL
- The President’s Council on Fitness, Sports & Nutrition: I Can Do It, You Can Do It! http://bit.ly/2sJlSVQ
This fact sheet was made possible through support from the Centers for Disease Control and Prevention (CDC), Cooperative Agreement #5NU38OT000172-04-00 (specifically, this project was supported by the Disability and Health Branch within the National Center on Birth Defects and Developmental Disabilities).