People Living with Disabilities Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop (2018) / Chapter Skim
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4 Provider and System Barriers
4 Provider and System Barriers
Pages 37-52
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From page 37... ...
. 3 This section is based on the presentation by Tom Wilson, community organizer for health care at Access Living, and Susan Aarup, a disability rights advocate and co-chair of ADAPT, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
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From page 38... ...
One qualitative study, for example, consisted of 10 focus groups involving 87 Medicaid recipients with many types of disabilities and six focus groups involving 40 women with physical disabilities who tried to access cancer screenings (see Box 4-1)
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From page 39... ...
PROVIDER AND SYSTEM BARRIERS 39 identified a variety of barriers in five categories: physical access, finance, policies, attitudes, and lack of information. The comments compiled in these focus groups clearly indicate the many barriers that individuals with disabilities experience in their efforts to get the care they need, said Wilson.
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From page 40... ...
40 PEOPLE LIVING WITH DISABILITIES income and using public transportation and relying on just yourself is like, you know what I mean? " • "I went in there one time, and I was in very, very bad pain.
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From page 41... ...
That fails to take into account that people with disabilities may need more time, whether it is because of transferring or because of sign language interpretation or if it is just because their situation may be a little more complicated." He also added that he is not sure that the movement toward Medicaid managed care is in the best interest of people with disabilities. "I think their emphasis on the bottom line can be detrimental to people getting the services they need," said Wilson.
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From page 42... ...
Mystified, Johnson asked why this was a problem and the surgeon said the implants are not designed to help adults hear better but to help children acquire language better. Another problem the surgeon noted was that children who receive the implants keep using their eyes, which he believes interferes with the acquisition of spoken English, which in turn would make it more difficult for these children to integrate into the mainstream community.
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From page 43... ...
" A 2002 survey of 40,000 deaf children in the United States found that only 4.4 percent of those children who were currently using a cochlear implant had normal functional hearing ability, 33.4 percent had mildly limited ability, 50.5 percent had severely limited functional ability, and 11.7 percent had no functional hearing, even with an implant (Mitchell, 2004)
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From page 44... ...
"People with disabilities lead long productive lives and can have very good quality of life, and this is again something that is fundamental to concerns regarding health equity and health disparities," she added. 6 This section is based on the presentation by Monika Mitra, associate professor at the Lurie Institute for Disability Policy at Brandeis University, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
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From page 45... ...
To get a better understanding of why this is so, Mitra and her collaborators interviewed 25 mothers with physical disabilities and 14 obstetric care professionals with substantial experience delivering prenatal care to women with physical disabilities. Three themes came out of the discussions with women who had a physical disability regarding provider interactions: 1.
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From page 46... ...
Part of that is because they were told -- well, first of all the usual stereotypes -- they don't have sex, can't have sex, they can't get pregnant, and if they get pregnant they should abort. All of which is usually not true." Regarding negative attitudes, one provider Mitra interviewed said, "We do have our own prejudices about disabilities.
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From page 47... ...
. In Mitra's view, this is a matter of ensuring that the culture of disability is included as one of the many cultures addressed in cultural competence initiatives in health care, and it starts with promoting the inclusion of disability-related theory, research, and clinical learning experiences in health care training, something for which the Alliance for Disability in Health Care Education has been advocating.7 Enforcing the Culturally and Linguistically Appropriate Services in Health Care standards and Section 4302 in the Patient Protection and Affordable Care Act (ACA)
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From page 48... ...
An unidentified participant asked Johnson if the experience with cochlear implants -- that their use may not translate to better academic performance -- requires a change in the way the medical community thinks about these devices. Johnson remarked that while many people believe deafness is something that must be cured, most deaf people do not think they need to be cured.
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From page 49... ...
Today, the percentage of African American and Hispanic students at Gallaudet is higher than their proportion in the mainstream population, which Johnson attributed to so many white children receiving cochlear implants and being put into mainstream education, where they may or may not be doing well. Wilson commented that his organization's research has found enormous communication barriers for deaf patients in health care settings.
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From page 50... ...
For example, if someone is hallucinating, one interpreter might ask the individual if he or she is seeing things others are not seeing or if he or she is hearing voices. She also noted that when she worked in Miami she found that inner-city African American deaf children had their own sign language, which could create a disparity when those children require interpreter services when receiving health care.
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From page 51... ...
She noted that establishing paternity is a strong indicator of long-term health and quality-of-life issues for both mother and child. Yee asked Johnson if cochlear implants had a positive impact on maintaining literacy in deaf children.
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