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The Collaborative on Health Reform and Independent Living

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The Collaborative on Health Reform and Independent Living

  • Projects
    • Disability Stories Project
    • CHRIL/IL-NET COVID Survey
    • Social Determinants of Health
    • CIL Transitions and COVID
  • Research
  • Events
  • Fellowship
  • Training
  • Team

Evaluating MTurk as a recruitment tool for rural people with disabilities

September 30, 2020 Elizabeth Wood
Image: A laptop computer and mouse on a wooden table, viewed from above

Image: A laptop computer and mouse on a wooden table, viewed from above

Amazon Mechanical Turk (MTurk) is a website used to crowdsource tasks, and for a decade it has been used to conduct research within the fields of social science. This paper examines the efficacy of using MTurk to recruit people with disabilities for survey samples, in contrast to the traditional method of working through established relationships with disability organizations. The study finds that each approach can over- and under-represent different groups within the general population and suggests that a combination of both methods may create the most diverse and accurate sample.

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Perspectives on Health Policy From People With Disabilities

September 30, 2020 Elizabeth Wood
Image: The dome of the US Capitol building, with large clouds growing behind

Image: The dome of the US Capitol building, with large clouds growing behind

As a marginalized group, disabled people face numerous challenges when it comes to political participation in the United States, and the policy views of disabled people have been historically ignored even within the field of health policy research. This study seeks to address this gap using national surveys and interviews to reveal key insights from the disabled population, including the effects of stigma and exclusion on health care quality, opinions regarding the efficacy of the Affordable Care Act, and desires for expansion into a universal system.

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Health Disparities Among Sexual and Gender Minorities with Autism Spectrum Disorder

March 3, 2020 Elizabeth Wood
Image: A large group at a gay pride parade, holding up rainbow flags.

Image: A large group at a gay pride parade, holding up rainbow flags.

This national survey finds that among Americans with autism spectrum disorder (ASD), those that also identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+) not only have worse experiences with healthcare but worse health overall. LGBTQ+ respondents indicated notably worse physical and mental health compared to those that identify as straight and cisgender, and when seeking help for these problems, their needs were less frequently met by providers, with some individuals being refused service entirely. Through the intersection of ASD and sexual or gender identity, this study reveals the health disparities that minority groups in the United States face and discusses what might be done to address them.

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Differences in Social Connectedness and Perceived Isolation Among Rural and Urban Adults with Disabilities

September 30, 2019 Elizabeth Wood
Image: A person reaching out their hand to another person’s palm; their faces cannot be seen.

Image: A person reaching out their hand to another person’s palm; their faces cannot be seen.

Social isolation has been compared to smoking in terms of risk to public health. Some groups are at particularly high risk for these feelings, including people with disabilities and rural residents. Few studies have considered the potentially compounding effects of disability status and rural residency. To evaluate how reported satisfaction with social participation and perceived isolation relate to the health of rural and urban people with disabilities, and to consider whether number of disabilities, living arrangement, and employment status were.

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A Comparison of Health Disparities Among Americans With Intellectual Disability and/or Autism Spectrum Disorder and Americans With Other Disabilities

September 30, 2019 Elizabeth Wood
Image: An older man with a balding head reaching out his hands to a younger man with a beard and a maroon baseball cap; they’re both laughing.

Image: An older man with a balding head reaching out his hands to a younger man with a beard and a maroon baseball cap; they’re both laughing.

This article uses recent survey data to compare and contrast American adults with intellectual disability (ID) and/or autism spectrum disorder (ASD) and those with other disabilities with regard to overall health, access to health care, and other aspects of community participation.

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Consumer Messages to Policy Makers

August 5, 2019 Elizabeth Wood
Image: A woman with glasses and a surgical mask takes the blood pressure of an older man with a black baseball cap; he’s lying on a hospital bead with tubes hooked up to his arm.

Image: A woman with glasses and a surgical mask takes the blood pressure of an older man with a black baseball cap; he’s lying on a hospital bead with tubes hooked up to his arm.

On the 2018 National Survey on Health Reform and Disability (NSHRD) and during national telephone interviews in 2019, consumers with disabilities were asked about their experiences with health care services and insurance. At the end of each interview and as the final question on the NSHRD, participants were asked: “What would you tell policymakers about access to health insurance and health care services for people with disabilities?” The quotes provided below are a selection of responses to this question.

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CHRIL at NARRTC!

April 23, 2019 Elizabeth Wood
Image: A professional meeting room with empty office chairs, projector equipment, and a blank paper board; skyscrapers and trees can be seen out the window.

Image: A professional meeting room with empty office chairs, projector equipment, and a blank paper board; skyscrapers and trees can be seen out the window.

CHRIL research is on display April 23 and 24 at the NARRTC conference. We would love to see you and talk about our work and yours. Our slides from our Tuesday morning presentation are available in PDF here. For alternate formats, please contact liz.wood@wsu.edu.

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Perspectives of Adults with Disabilities on Access to Health Care after the ACA: Qualitative Findings

March 5, 2019 Elizabeth Wood
Image: Doctors in purple and white scrubs walking away from the camera down a hospital hallway.

Image: Doctors in purple and white scrubs walking away from the camera down a hospital hallway.

Although health insurance gains are documented, little is known about personal experiences of adults with disabilities in accessing health care after coverage expansions of the Affordable Care Act (ACA) in 2014. We interviewed 22 adults across the U.S. with a variety of disabilities and health insurance types to document remaining barriers to health care after ACA coverage expansions.

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Healthcare Utilization and Spending among Working-Age Adults with and without Disabilities, 2008-2016

February 19, 2019 Elizabeth Wood
Image: An old-fashioned cash register in close-up.

Image: An old-fashioned cash register in close-up.

In an effort to make information about healthcare, health reform, and people with disabilities more available and accessible, we have developed the following chartbook about the healthcare utilization and expenditures of working-age people with and without disabilities. These results are presented with minimal interpretation and you are welcome to use them with attribution.

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Medicaid Expansion as an Employment Incentive Program for People With Disabilities

August 16, 2018 Elizabeth Wood
Image: White paper house being covered or protected by a purple umbrella.

Image: White paper house being covered or protected by a purple umbrella.

Before the Patient Protection and Affordable Care Act (ACA), many Americans with disabilities were locked into poverty to maintain eligibility for Medicaid coverage. US Medicaid expansion under the ACA allows individuals to qualify for coverage without first going through a disability determination process and declaring an inability to work to obtain Supplemental Security Income. Medicaid expansion coverage also allows for greater income and imposes no asset tests. In this article, we share updates to our previous work documenting greater employment among people with disabilities living in Medicaid expansion states.

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“Just because our diseases are rare doesn’t mean we don’t count:” Perspectives of Americans with disabilities on access to health care

April 24, 2018 Elizabeth Wood
Image: A microphone in front of a purple background.

Image: A microphone in front of a purple background.

While health reform has expanded health insurance coverage for millions of Americans, people with disabilities continue to face numerous barriers to accessing and receiving health care. During the summer of 2017, CHRIL staff at the University of Kansas conducted telephone interviews with a diverse national sample of 22 working-age people with a range of disabilities and coverage types (employer-sponsored, Medicaid, Medicare, marketplace plans and no insurance) to document their experiences with health insurance and obtaining timely access to health care services. During the interviews, participants were asked if they wanted to share any insights or suggestions with policy makers. This brief documents these personal perspectives on barriers to care and suggestions for improving health coverage for Americans with disabilities.

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The CHRIL survey on health insurance and health reform (Now Closed)

April 17, 2018 Elizabeth Wood
Image: A woman takes a survey on a clipboard.

Image: A woman takes a survey on a clipboard.

The National Survey on Health Reform and Disability is now closed and all giftcard drawings have been completed. Analyses from this survey will be posted on this website when completed. If you have other questions about the survey itself, please feel free to email healthsurvey@ku.edu. The National Survey on Health Reform & Disability will be fielded again in the Fall of 2019.

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Centers for Independent Living report that their consumers are concerned about the uncertain climate of health reform.

April 12, 2018 Elizabeth Wood
Image: A purple F. A. Q. key on a black keyboard.

Image: A purple F. A. Q. key on a black keyboard.

Throughout 2017, an online needs assessment survey was administered to nearly 150 CILs. In this survey, CHRIL set out to collect data regarding the CILs funding sources, staff perspectives on the concerns and interests of consumers, the type and frequency of health insurance counseling and enrollment assistance CILs offered, and questions or concerns CIL staff had regarding the health insurance marketplace.

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For people with disabilities, living in a state that expanded Medicaid meant they were more likely to have a job.

April 5, 2018 Elizabeth Wood
Image: A construction worker stands in a waist-high ditch. Purple cables are in the foreground.

Image: A construction worker stands in a waist-high ditch. Purple cables are in the foreground.

Before the Affordable Care Act (ACA), many people with disabilities were required to live in poverty to maintain their Medicaid eligibility. With Medicaid expansion, they can enter the workforce, increase earnings, and maintain coverage. This study confirmed that people with disabilities were more likely to be employed in the Medicaid expansion states compared with those in non-expansion states (38% vs 32%).

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The prevalence and treatment of opioid misuse among working-age adults with disabilities, 2016

March 5, 2018 Elizabeth Wood
Image: A pair of hands in purple medical gloves count a handful of small white pills.

Image: A pair of hands in purple medical gloves count a handful of small white pills.

The United States is in the midst of a deadly opioid epidemic. About 11.8 million Americans misused prescription opioids in 2016. About 42,249 died from an opioid overdose. Adults with disabilities are much more likely to report constant pain than others. Because of this, they are more likely to use and depend on prescription pain medication. The risk of herion use is higher in adults who use prescription opioids for other than pain relief. It is important to look at misuse of legal and illegal opioids at the same time. This study looks at working-age adults (18-64) with and without disabilities. It compares the frequency of and treatment of opioid misuse.

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After the ACA, more people with mental health conditions had insurance and could access care

March 1, 2018 Elizabeth Wood
Image: A clean, relaxing empty medical waiting room with cream walls and floor and purple couches.

Image: A clean, relaxing empty medical waiting room with cream walls and floor and purple couches.

According to recent studies, the Affordable Care Act (ACA) improved access to health care and health insurance in the United States. Parts of the law say that insurers must cover people with pre-existing conditions. They also say that insurance must cover mental health services. Under the ACA, some states also chose to expand their Medicaid programs to cover more people.

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People with Disabilities and Health Insurance Marketplaces (Report)

January 1, 2018 Elizabeth Wood
Image; A purple keyboard, with the photo centered on one key which features the logo of a shopping cart.

Image; A purple keyboard, with the photo centered on one key which features the logo of a shopping cart.

Before the Affordable Care Act, people with disabilities had trouble buying private insurance. In 2014, private health insurance marketplaces opened in each state. Now people with pre-existing conditions could purchase private health insurance. Some people also qualified for a subsidy or a tax credit to help them purchase insurance. This report compares how the enrollment process, insurance costs, and coverage available for people with disabilities may have been different from others who enrolled in the marketplaces.

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Under-representation of certain disability groups by the American Community Survey (ACS)

October 6, 2017 Elizabeth Wood
Image: An abacus with colorful beads.

Image: An abacus with colorful beads.

In this article, the authors are commenting on a previously published article and stating that American Community Survey (ACS) disability questions are now used on all federal surveys.

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High-Risk Pools: An Illusion of Coverage That May Increase Costs for All in the Long Term

August 12, 2017 Elizabeth Wood
Image: A purple and pink beach ball floats in a blue swimming pool.

Image: A purple and pink beach ball floats in a blue swimming pool.

This article provides information on a state option in the American Health Care Act (AHCA) that allows for high-risk pools in health insurance plans. These plans place persons with preexisting conditions into a pool with others who may have high health care costs. In the past, high-risk pools have not made the cost of insurance affordable or provided adequate coverage to persons with or without preexisting conditions. High-risk pools operated in 35 states before the ACA was passed. At that time, the United States had 47 million uninsured people, 33 million of whom lived in states with high-risk pools. The authors believe that any legislation providing for high-risk pools would be a huge step backward for American health care policy.

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"Paying the price to get there": Motherhood and the dynamics of pregnancy deliberations among women with disabilities

July 10, 2017 Elizabeth Wood
Image: A woman in a gray dress stands in front of a brick wall. She is holding her pregnant stomach.

Image: A woman in a gray dress stands in front of a brick wall. She is holding her pregnant stomach.

Women with disabilities are not as likely to become pregnant as women without disabilities. This study looks at how women with disabilities make decisions about pregnancy. Four focus groups were held with 22 women of child-bearing age. Most of the women wanted to become mothers, but they had concerns about becoming pregnant. Three things affected their decision: 1) how important it was to them to have a child, 2) whether it was possible for them to become pregnant, and 3) the costs of having and raising a child.

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jjkennedy@wsu.edu

The contents of this website were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (#90DP0075-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.