In the workshop’s second panel session, four speakers discussed some of the barriers that affect the ability of individuals with disabilities to get all of the care and services they need to thrive in the community. Tom Wilson, community organizer for health care at Access Living,1 and Susan Aarup, a disability rights advocate and co-chair of ADAPT,2 a grassroots organization that advocates for all people living with disabilities, addressed physical and navigation access barriers. Robert E. Johnson, professor emeritus at Gallaudet University, spoke about communication barriers, and Monika Mitra, associate professor at the Lurie Institute for Disability Policy at Brandeis University, described how provider attitudes toward people with disabilities can be a barrier to care. An open discussion moderated by Marin P. Allen, deputy director for communications and public liaison and director of the Public Information Office at the National Institutes of Health, followed the three presentations.
In his 26 years working in the disability rights movement, Tom Wilson has seen people with disabilities in some horrific situations, including being
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.
homeless or forced to live in institutions where the care is abysmal. “I have seen people living in dank basements, and I have seen people living in unheated garages,” said Wilson. “Poverty is a killer for people with disabilities, and SSI [Supplemental Security Income] payments almost guarantee that you’re going to live in poverty.”4 Medicaid is essential, he added, but it is often not enough, especially as states are cutting back on Medicaid programs.
Part of Wilson’s responsibilities includes working with researchers at the University of Illinois at Chicago, to document the health care barriers people with disabilities face. 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). These focus groups
4 Supplemental Security Income is a program administered by the Social Security Administration.
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. Illustrative comments included the following:
- “It is never our fault that they don’t have the training or the equipment to make it a safe clinical experience for us. Because it’s all out there. The training is out there. The equipment is out there.”
- “They were more concerned about trying to get me to stand up straight, which won’t happen, either with spinal stenosis you tend to lean forward, you know the way the surgery was done, that’s how it left me leaning forward. They keep saying you have to stand up, and I said ‘This is standing up. What else? Go ahead and break my back, see if I care.’ But they just act like they don’t have a clue of what you’re telling them if you say you cannot, then you figure out some other way to do it. But they only have it in their head that this is the way I was trained to do it. And this is what we got to do. It doesn’t work that way with everybody.”
- “They never had anybody help transfer her from her chair to the table and she was in tears because they always called up the security guard with a holster and a gun while she’s in this little gown thing, which they put on her, and she just got to the point where, here she is, she’s got cerebral palsy, she’s got cancer, she’s, you know, depressed, she doesn’t want to go in for the cancer uterine exam, and yet she has to put up with the embarrassment and the humiliation.”
- “My problem is some doctors, I don’t know if they feel intimidated that you have a disability, you’re sitting in this chair, sometimes they get scared. They don’t even want to touch you.”
- “I said, you can examine me like you examine any other woman. I’m not going to break, you know.”
- “My primary doctor used to take care of my pap smears and my breast exams, but one day it got to the point where I could not get up on the table anymore. The tables are too high so I couldn’t do it. I told my doctor I couldn’t do it, and he said okay and that was that. And so I went 5 years without a pap smear or a mammogram.”
- “You’ve got to have an open mind to be able to accept what I’m going through even though I might have the same disability you have and everything. But you might have a better financial situation than me, so you don’t even have a clue of what a person on a fixed
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. I wasn’t able to bend down to empty out my leg bag, and I asked them if they could help me do that, and they said they wouldn’t. I said, ‘If you don’t help me do that, I’m going to start having an accident on myself, and I’m trying not to do that.’ Their response was that they didn’t have anybody to do that and I should have somebody come with me if I know that I’m going to need that kind of help and I’m in that kind of situation.”
- “Sometimes they just don’t care. You have to be able bodied and walk so they can listen to you. If you’re in a chair, they’re not going to listen.”
- “[The doctor] told them, ‘Take his blood pressure . . . and get him out of here.’ And I looked at those residents. They was trying to ask me that question. I was so pissed off, tears came to my eyes. I’m not saying nothing else to nobody. And I was broke, and I had to go out and find somebody to give me the money to pay for my aspirin, the blood thinner. In so many words, he basically said ‘Get a prescription and get him out of here.’ I didn’t like that.”
- “The disabled people out here, we’re not being treated right. We’re barely surviving as it is on our income. And everything goes up all the time or you’re cut on this, cut on that. Some medications you take won’t be given unless at full price. They will tell you, ‘Medicare won’t cover it . . . you have to pay cash.’ Excuse me?”
- “I guess accessibility is one of the issues up there, then, a big barrier, not being able to get up on the table. I had a situation where they, the doctors, tried to tell me that I wasn’t able to get up there and they asked me how much I weighed. But due to the fact that they didn’t have one lift working, they didn’t want to see me or they didn’t want to put me on the table. I said, ‘Well, why don’t you guys get a couple more people to help you?’ ‘Oh, no, because we’re liable. If we drop you, we don’t want to be liable for that.’”
- “I went to one physician and the first two times I saw him he examined me in my chair. The third time I went back I said, ‘No, no, you’re not examining me in my chair. I’m getting up on the examining table. I don’t care how you have to get me up there, but you’re going to get me on the table and you’re going to examine me that way.’ I just had to be forceful and get it done. Because, remember, if we’re not examined, that affects the medication we take. That affects our weight. If we’re not being weighed properly and like we should, that affects us. So those things are very important because the doctors are going to give out medicine.”
Susan Aarup said she could identify with many of these quotes. Once, she recounted, she had a kidney stone and went to see her doctor, who told her he needed a urine sample before he could treat her. When she told him that she needed help to provide the sample, he responded that he could not help her and she should go to the nearest emergency department to have the test run. At the hospital, which was not near her home, she had to explain that while providing a urine sample may not be an emergency, having an undiagnosed kidney stone would lead to one. The response she got was that she was at the emergency department for her disability instead of a kidney stone. “This happens all the time,” said Aarup. “People think just because you are going to the doctor for a sore throat that it has to do with your disability.” She also noted that she went through a 5-year period where she was never weighed at her doctor’s office because there was no accessible scale and nobody would transfer her to the existing scale. She also noted that although she has personal assistants who help her with most activities of daily living, her assistants cannot always attend every one of her appointments.
Wilson explained that the Illinois legislature passed two safe-lifting bills—one for hospitals, the other for nursing homes—that were developed in a collaboration involving his organization, nurses, and individuals with disabilities. The laws state that a person with a disability must be asked how they want to be lifted, and that there must be a trained safe-lifting team available at any time. While he cited this as an example of what advocacy can accomplish, he said that he wished the enforcement mechanisms were stronger. Aarup added that she has been arrested four times protesting in front of the nurses association against a nurse-generated proposal that would require anyone with a catheter to be hospitalized.
As a final comment, Wilson stated that health care in the United States is unequal. “We have many doctors who do not take Medicaid now, and there are many providers that are inflexible and tend to force people into 15-minute appointments. 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.
He suggested that providers need more training on how to work with individuals who have a disability. One solution he proposed would be to use more peer health navigators to improve communication between provider and patient, something that his organization is in the process of studying. He also voiced his opinion that a single-payer health care could help eliminate many of the inequalities that exist in the U.S. health care system. “We
should not have a health care system that is based on your wealth or what kind of insurance you have,” said Wilson, to which Aarup added, “or your employment status.” In her final remark, Aarup said, “If I can leave you with one thing, when you are talking and working and being with people with disabilities, all we want is to be treated as equals. I should be able to get the same care that you get.”
A generalized view of bilinguality in the United States, said Robert Johnson, is that it is a problem that hinders English acquisition, it is a divisive deviation from the norm, and it threatens nationhood. With that as context, he relayed a conversation he had with one of the nation’s outstanding cochlear implant surgeons. During the course of that conversation, the surgeon said that one interesting problem with these implants is that deaf adults want them. 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.
With regard to the second “problem,” Johnson said the notion that learning American Sign Language (ASL) inhibits the acquisition of spoken English comes from what he calls the single glass concept of bilinguality. In this conceptualization of language acquisition, language is contained in a single glass in the brain and the glass has only so much room. “If I speak English, my glass is full of English. If I speak ASL, my glass is full of ASL,” said Johnson. “The idea is that one language will displace another language from that glass.” What is interesting about this notion, said Johnson, is that it seems to apply only to bilinguality from birth, because most people he encounters think it is wonderful that he is bilingual in English and ASL, a language he learned as an adult.
The fact is that the glass concept is wrong, and languages do not compete for space in the mind. In fact, U.S. Census data show that nearly 78 percent of people age 5 to 17 living in the United States who speak languages other than English at home still speak English “very well” or “well” (Ryan, 2013). There is good evidence, added Johnson, that it is beneficial for children to know more than one language.
5 This section is based on the presentation by Robert E. Johnson, professor emeritus at Gallaudet University, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
Turning to what he called the second theme to that surgeon’s remarks—that with implants, children will have a better opportunity to acquire useful spoken language skills that will integrate them into the mainstream community—Johnson said that although a small percentage of people have benefited from adaptive technologies, the majority of deaf people continue to use their vision after receiving cochlear implants. “This is not a loss,” said Johnson. “It is an adaptive gain. The question is, can the world adapt to their need for visual access?”
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). These results paint a much less favorable outcome for cochlear implants than is reported in the medical literature, said Johnson. In fact, he added, the distribution of hearing ability is almost identical to that of children who did not receive implants. “What it means is all that effort had less than a substantial impact on the nature of the population,” said Johnson.
What do these findings have to do with equity? Johnson explained that the cochlear implant industry is closely aligned with the oral education industry, and there is a requirement, or at least a strong encouragement, that children with implants use speech-only education. However, said Johnson, “If we insist on a speech-only educational model, the bulk of deaf children will not have access to equal educational opportunity.” The reason, he said, is because the linguistic assumption of the modern classroom is that teachers and children can communicate in the same language. Given that functional access to speak is dramatically less than universal and that ASL in the classroom permits direct interaction between the participants, the critical and perpetual question becomes, is speech more important than access to educational content?
Aside from this inequity, Johnson noted that white children receive most of the implants. Of the children with implants whose parents were surveyed about their experiences with their child’s cochlear implant, 70 percent were white, non-Hispanic, and 57 percent of the children came from households with incomes of more than $50,000 (Allen, 2000). He also pointed out that 96 percent of the children who had received an implant were still using them. “What this means practically is that deaf education as we have known it is becoming a minority issue if, in fact, getting an implant removes kids from the population of kids getting deaf education,” said Johnson.
One argument supporters of cochlear implants use is that children who receive the implants will be able to interact normally, but a survey of children with implants found that the amount of interaction with hearing children is
surprisingly low. “If, in fact, this technology is making these children into normal hearing children, they would be interacting with hearing children more,” said Johnson.
Adding a comment after Johnson’s presentation, Allen said that the latest U.S. Census data show that there are now some 350 languages being spoken at home in the United States. In the District of Columbia alone, she added, there are 168 different languages being spoken or signed. “If we look at ASL as one example of how language influences education in the future and the fact that children, in terms of the minority population, are growing faster than the adult population, we have much work to do in this area,” said Allen.
There are some 50 million American adults who have a self-reported disability, and these numbers are increasing, said Monika Mitra. She added that people with disabilities use disproportionately more health care resources than do people without disabilities, and despite the fact that the Americans with Disabilities Act has been in force for 25 years, there are significant disparities in health outcomes, health care access, and quality of life between people with and without disabilities. “We know that people with disabilities are less satisfied with their quality of care, and we know they have greater difficulty accessing health care services and programs,” said Mitra.
As previous speakers had noted, these inequities, said Mitra, arise from structural and systematic barriers such as problems with communication, transportation, and insurance, as well as barriers related to the accessibility of health care services and facilities for individuals with disabilities. Inadequate housing, financial barriers, and a lack of employment opportunities also negatively affect equity, as do providers’ negative attitudes, misperceptions, and the lack of knowledge of the needs of people with disabilities.
Over the past two to three decades, the public health and health care systems have slowly changed their focus from one of preventing disabilities to the inclusion of individuals with disabilities in public health programs and services. “We should think about the inclusion of people with disabilities in all public health programs and services,” said Mitra. It is also important, she said, not to automatically equate disability with poor health. “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.
A critical issue in her mind is that of intersectionality. “We cannot, in public health and society at large, look at disability with one single lens. Disability interacts with race, with ethnicity, with poverty, and with gender,” said Mitra. She noted that people of color who have disabilities are more likely to have poor health status, poor quality of life, and less frequent use of preventive screenings.
To draw attention to the issue of disability and cultural competence in health care, Mitra presented some findings from an ongoing study of the unmet needs and barriers to perinatal care for women with physical disabilities. An examination of administrative and survey data shows clearly that women with disabilities are more likely to have pregnancy complications, inadequate access to prenatal care, and poorer birth outcomes. 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:
- Clinicians lack knowledge of needs of women with physical disabilities during pregnancy.
- Clinicians fail to consider knowledge and experience of women with physical disabilities.
- Health care providers have negative attitudes toward women with physical disabilities.
This is not to say that every woman interviewed had a horrific experience. In fact, Mitra reported that many of the women interviewed spoke about how supportive and respectful their providers were, and that they had good pregnancies and positive birth experiences. One woman, for example, said this about her provider: “She knew how badly we wanted to have a baby and was supportive. I feel like she treats me like a regular patient and like I don’t have a disability.”
However, reflecting a problem stated earlier, some of the women felt the clinicians were treating them as if they were not sexual beings. One participant, for example, said her doctor asked how she got pregnant and if it involved using a turkey baster. Mitra added that the 25 women who she and her collaborators interviewed had given a great deal of thought about getting pregnant and had done research on pregnancy and disability before getting pregnant. In fact, Mitra was surprised both by how many of these women had preconception appointments with their providers and by some of the clinicians’ reactions to their plan to get pregnant. One clinician was reported to tell his patient that she needed to remain abstinent, another said
that if he was the woman’s parent he would do everything to convince her to adopt, and a third told the woman she was too disabled to get pregnant. “Fortunately, this did not dissuade this individual from getting pregnant,” said Mitra.
One woman, speaking about her preconception appointment, reported that the obstetricians were very negative for the first few appointments. “They were just coming in and just seeing the disability with some preconceived notions, and I had one [provider] tell me I would automatically deliver at 26 weeks and my child, if it lives, would be mentally and physically disabled . . . strictly because I was in a wheelchair and needed care myself,” she said. In another case, Mitra relayed, a nurse refused to touch a woman’s residual limb (from an amputation) while the woman was giving birth.
When the women were asked for recommendations for providers, a consistent request was to be treated as women and moms to be just like any other patient they would see. All they wanted, Mitra explained, was for clinicians to be sensitive to their needs and be respectful of their desire to become pregnant. Too often, women reported, clinicians refuse to take cues from their patients. Many also reported that they did not know that there are accessible weighing scales and never had their weight taken during their pregnancy. Some even had cesarean sections without being weighed during their entire pregnancy. “I am not a physician, but something tells me that is not right,” said Mitra.
Mitra and her colleagues also interviewed 14 obstetric care practitioners across the country and asked them about unmet needs when it comes to caring for women with physical disabilities during the perinatal period. The providers’ answers were similar to those they had heard from the women who had been interviewed, said Mitra. “There are significant misconceptions by health care providers in terms of [their patients’] sexuality and reproductive health,” said Mitra. The practitioners also noted a critical need for training and education of health care professionals and a general lack of familiarity with women with disabilities. One practitioner, commenting on others who had seen the same patient previously, said, “My most rewarding experiences have been with patients who have disabilities who get pregnant and deliver. 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. Whether it’s the baby or the patient. And I guess . . . open-mindedness about that early on would be helpful. I don’t know how you do that, except maybe going back to medical school.” The need for more training was reflected in a comment from another clinician, who said, “You are figuring it out as you go along. You
are trying to do your best, but if you have not been educated on specifically how to work with people that have contracted muscles, for example, it is kind of hard to get them . . . in a position comfortably where you can insert a speculum and do a GYN exam. It can be, as you can imagine, incredibly traumatic.”
Mitra and her colleagues asked both the women they interviewed and the health care practitioners for their recommendations to those who provide prenatal care to women with disabilities. The results were similar, with both groups recommending that providers coordinate care with other providers, include the women in their own care, and seek additional information from the patient’s health record, from the woman herself, and from the medical literature. The practitioners also recommended allowing enough time to adequately examine and address the needs of their patients with disabilities, while the women interviewed recommended that providers not make assumptions about the abilities of their patients with disabilities.
The question then becomes how to move forward, to go beyond treating disease to addressing the needs of persons with disabilities (Iezzoni, 2006). 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), both of which call for identifying the number of health care providers who are trained in disability awareness and patient care, would help as well, and Section 4302 of the ACA, which mandates collection of disability data across a health care system, could call more attention to the problem. Mitra stated that with all these pieces, the collective body can move forward and really try to make a concerted effort to ensure that the culture of disability is included in cultural competence initiatives in health care settings going forward.
Jennifer Dillaha began the open discussion by asking Mitra if an inter-professional educational curriculum, which Arkansas’s medical school is using to provide health literacy training for all health professionals, could play a similar role in educating health professionals about disabilities. Mitra replied that as far as she knows there are no guidelines or recommendations
to include this training in medical education. At her former institution, the University of Massachusetts Medical School, third-year students received some disability training, but it was done on an ad hoc basis, and Tufts University School of Medicine offers some training. “But we need to go beyond the boutique and ad hoc approach,” said Mitra, who noted that every clinician she and her colleagues interviewed said they learned about treating patients with disabilities either from a mentor or by figuring it out themselves through experience. Every clinician also reinforced the idea that such training needs to be included in medical education.
Aarup commented that the Destination Chicago program facilitates meetings between medical students and consumers with disabilities of all types. They do the same with occupational therapy students, who she noted are the professionals responsible for evaluating durable medical equipment needs.
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. “Deaf people think of themselves as an ethnic group; they do not think of themselves as victims,” said Johnson. “The medical establishment has been stubborn about that idea and has been stubborn about insisting they need to be fixed.”
Early detection is great, said Johnson, because it enables a child to get into an educational system where he or she can acquire a language at the developmentally appropriate time. “We know if you get a deaf child in contact with sign language, he or she acquires [language] exactly the same way that hearing children acquire English or Spanish,” he explained. When early detection implies surgery, though, Johnson is not sure that is a good thing and stated his opinion that the medical profession needs to reconsider that position as well as the notion that deaf adults should have cochlear implants given that the evidence supporting their use is anecdotal. “The whole field runs on anecdotal evidence that the medical community would not accept if you were looking at the quality of a medicine, for example,” said Johnson. “If we had a device like a cochlear implant where we can look and see that 12 years later only 4 percent of the kids are really functioning normally, we should reconsider our claims that this will create a normal function.”
In his opinion, giving cochlear implants to infants is a form of experimentation that he finds objectionable. “The medical profession has looked down on experimentation with children, and that is what we are doing.” He also noted that he is not against cochlear implants, just against implanting them into babies. “There is nothing wrong with the technology or the
devices,” said Johnson. “But if receiving that surgery creates educational decisions that prevent you from learning a language, learning content, and socialization, then there is something wrong.” In his view, all deaf children, regardless of whether they receive a cochlear implant or not, should learn both ASL and spoken English given that there is no evidence showing that knowing ASL hinders the acquisition of English.
Karen Anderson from the Health and Medicine Division of the National Academies asked Johnson to comment on whether deafness as a disability affects people of color differently than it does whites. Johnson replied that this is an area where people should stretch their minds and accept the notion that deafness can be a disability and an ethnicity. That notion allows society to deal with the disability issues, such as requiring hearing devices at theaters and better telephones and lights in hotel rooms, and with ethnicity issues involving language and education. Johnson noted that until 1964, when the last school for deaf African American children closed, deaf education was one of the last holdouts of segregation in the United States. Nonetheless, he said, the deaf community reflects the American community at large, and it has the same issues that the mainstream community does. When he first spent a sabbatical year at Gallaudet in 1978, there were only a handful of African American and Hispanic students on campus, and for the most part they were football players. 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. Repeatedly, he said, interpreters fail to appear at appointments or they were never requested in the first place, even in surgical and inpatient settings.
Allen asked Johnson to comment on Mirandizing deaf people. He replied that while most Americans can recite the Miranda warning from memory because they have heard it so many times on television, deaf people have had a different experience because of their reduced access to media. While this has improved over the past 20 years because of closed captioning, that exposure is still not good, and as a result, many deaf individuals do not know to ask for a lawyer when detained by law enforcement. In his experience working with deaf individuals accused of capital crimes, the interpreters did a terrible job explaining the Miranda warning. One interpreter told the deaf individual they had the right to remain silent, but to a deaf person that means to be quiet, not that they have the right not to sign and not incriminate themselves. In some cases, the police officer decided that because they had a deaf relative, they could finger spell the Miranda warning. “What was stunning was that not one of them ever asked for a
lawyer,” said Johnson. “The system makes assumptions about equity where there is not any equity.” An unidentified participant noted that not all hospital-based interpreters are allowed to interpret Miranda rights because they are not trained to do so. She suggested that hospitals be proactive and have a system in place to deal with deaf individuals who are brought to the hospital by law enforcement officers.
Barbara Kornblau, an attorney from the Coalition for Disability Health Equity, commented that mental health counseling for deaf individuals can suffer because many of the words used cannot be translated literally into ASL. 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. She also found that her deaf clients were more likely to be unemployed and have less education. “All of the social determinants of health were more profound with our deaf African American and Hispanic deaf clients,” said Kornblau.
Johnson added that the situation is like the game “Telephone,” where the message gets distorted as it passes through each individual. He also said that the reason African American deaf children would have a different sign language is simple. “If you keep two populations separate for 100 years, they are going to develop different languages, and in the case of African American and white children, the two sign languages are notably different,” said Johnson. He also commented that all deaf individuals need access to interpreters with the appropriate language and who know the medical system. A cousin who knows sign language, he said, is not an appropriate interpreter in a medical environment.
Silvia Yee asked Mitra if she had plans to repeat her study with women who have a mental health disability, and if so, if she could forecast how the results might be similar or different. Mitra responded that she is working on another project looking at pregnancy and perinatal care for women with intellectual and developmental disabilities that uses mostly administrative data at this point. Unfortunately, she said, the disparities are even wider. She and her collaborators have begun interviews with recent mothers who have intellectual and developmental disabilities. While they have interviewed only seven women so far and have not completed any analysis, one thing that has already come up repeatedly is the difficulty these mothers are having with the child welfare system. Too often, she said, the child welfare system does not understand disabilities and is taking children away from these mothers. “This is a very serious and significant problem,” said Mitra, and it points to the importance of doing interviews and not just using administrative data.
One finding from an analysis of the administrative data is that women with intellectual and developmental disabilities tend to be young when giving birth, which is contrary to the situation with women with other disabilities, who tend to be older. Another finding, for which Mitra had no explanation, was that women with intellectual and developmental disabilities are three times less likely to have the father named on their children’s birth certificates. 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. Johnson replied that as long as people think that deaf people must speak English, literacy is going to suffer. “Deaf people are bilingual in an unusual way. Through the air they use ASL and on paper they use written English. When you recognize that, literacy rates rise,” said Johnson. He noted that he distrusts most of the studies documenting a positive impact on literacy with cochlear implants because most of these studies have been done by researchers with a vested interest in demonstrating positive outcomes.
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