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KU study shows those with disabilities see health care access as a right

Published: Oct. 27, 2020 at 3:54 PM CDT
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LAWRENCE, Kan. (WIBW) - A study from the University of Kansas shows people with disabilities view access to healthcare as a human right.

The University of Kansas says researchers have published a study discussing perspectives of people with disabilities on health care policy and respondents overwhelmingly said access is vital and they would like policymakers to pay more attention to their needs.

According to KU, scholars analyzed data from 35 phone interviews and survey responses of over 475 individuals with disabilities about health policy. It said while respondents reflected political opinions of American society at large, they tended to agree that health care should be seen as a human right and that feelings of social exclusion and stigma inform what they would like to tell officials that make health policy in the U.S.

“We found that people with disabilities are marginalized and stigmatized and that policymakers don’t listen to them,” said Sarah Smith, a doctoral candidate in sociology, a graduate research assistant at KU and lead author of the study. “They also felt that access to health insurance was important in order to be able to take part in society and that policymakers did not consider how the policies they make affected their lives.”

KU said the study was published in the Journal of Disability and Policy Studies and was co-written by Smith; Jean Hall, professor of applied behavioral science and director of KU’s Insittute for Health and Disability Policy Studies; and Noelle Kurth, a senior research assistant at the institute. It said the interviews and surveys found five key themes about health policy perspectives among people with disabilities.

  • Access to health insurance and health care is critical for their ability to participate in society
  • They felt that politicians did not understand or prioritize the needs and experiences of people with disabilities
  • Participants used a variety of arguments why policymakers and society should care about people with disabilities
  • They felt access to health care is a human right or moral imperative
  • Participants expressed largely positive views regarding the Affordable Care Act.

According to the University, respondents nearly unanimously reported how important employment was to their lives in terms of financial security, access to health insurance, not depending on state programs for health coverage and for personal dignity. However, it said they also faced many barriers to employment, especially those that live in states that have not expanded Medicaid who tend to lose eligibility when employed.

“Employment is a key component of being part of society and a big part of personal identity,” Smith said. “But it can be very hard to access, and most health insurance is tied to employment, which also makes insurance difficult to access, especially if you’re not employed full time.”

KU said many participants also shared that policymakers do not consider their needs.

“I hear politicians on the TV talking about me as if I am the cause of the budget deficit,” one respondent said. “They seem to lump us into a group of people — well, not people: ‘You’re the budget deficit, you’re this, you’re that,’ instead of saying, ‘These are people who need care.’ Maybe the number one thing, then, is an attitude change. You’re not dealing with line items on a budget; you’re dealing with what real people need.”

According to KU, previous research shows political leanings of people with disabilities are representative of those of American society at large and participants used a variety of arguments for a matter they agreed on: Policymakers should care about those with disabilities. It said the arguments included that no one chooses to be disabled, anyone can become disabled, better health care access will lead to a more productive society, all individuals should matter to policymakers as human beings and that politicians should make health care policy for all like what they want for themselves and their families.

KU said health care was viewed as a human right, not something that should only be given to certain members of society, according to the findings.

“Policymakers already know that restricting access to health care has outcomes that range from loss of income to loss of life,” one participant said. “True access means that all citizens, regardless of their ability to pay, have access to the same range of services. Like water and an unpolluted environment, health services are essential to life, liberty and the pursuit of happiness.”

KU said participants also expressed positive opinions on the Affordable Care Act. It said many reported that they still struggle with health care costs but were at least able to get health insurance through the act. It said primarily, the law’s health insurance premium subsidies, coverage for preexisting conditions and Medicaid expansion were important to study participants.

According to KU, taken as a whole, the results show the connections among disability stigma, health policy and politics. It said previous research shows that people with disabilities face barriers to political participation, similar to those they face with employment and participation in society, and as a result, their voices are often underrepresented in health policy discussions, even though their lives are greatly affected by the policies made. It said as key participants in programs like Medicare, Medicaid and Social Security, the population can give vital insight into the functioning and outcomes of those programs. It said as the nation’s population ages and the COVID-19 pandemic affects more people’s long term health, new complications to health care access are expected.

“This is a population that knows a lot about health policy, because they have to know a lot about navigating insurance and health care systems. Policymakers should listen to them,” Smith said.

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