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Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
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3

Voices of the Community

The workshop’s first panel session aimed to foster the connections between the policy and research bodies, such as the National Academies of Sciences, Engineering, and Medicine and the Health and Medicine Division, with the people working at the front lines of health care. As such, the three panelists—Sherman Gillums, Jr., executive director of Paralyzed Veterans of America;1 Karen Marshall, founder and executive director of the Kadamba Tree Foundation;2 and Diane Kearns, commissioner on the Austin Mayor’s Committee for People with Disabilities and the parent of a child with multiple disabilities—spoke of their own personal experiences either as a person with a disability or as someone who cares for an individual with disabilities. They detailed their experiences with care and benefits received and how literacy, race, ethnicity, and other issues intersect with these experiences. The speakers also discussed the demands that health care systems place on those with disabilities and described steps that have helped improve access and care delivery. An open discussion moderated by Melissa Simon, vice chair of clinical research, the George H. Gardner Professor of Clinical Gynecology, and associate professor of obstetrics and gynecology at the Northwestern University Feinberg School of Medicine, followed the three presentations.

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1 See http://www.pva.org (accessed October 10, 2017).

2 See http://www.kadambatree.org (accessed October 10, 2017).

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
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VETERANS WITH DISABILITIES3

“When you think about society and status, what does it actually mean to be disabled, and does a disabled person’s ability to perform a function using alternative means remove the disability?” asked Sherman Gillums to start his presentation. “I know that is not all that profound a question, but I often wonder if disability is measured by how you look or whether or not you can perform a function, and if you can perform that function by whatever means, does that remove the disability?”

Typically, said Gillums, people picture the disabled as a wounded warrior or an elderly person who needs help with tasks of daily living, but he wondered if someone can be rendered disabled, by conventional definitions, merely based on the need for help performing any task, such as being too short to reach an item on top of a cabinet. Legally, the answer would be no, but by that definition, he added, everyone who has needed any type of assistance to perform a task experiences what it feels like to be disabled to at least some extent.

When he was injured and left with a disability, Gillums was less concerned with what he would not be able to do and more fearful of how people would view and treat him because of his disability. Would they know that he is a father, a graduate student, and a taxpaying citizen? Or would they see him as solely defined by his need for his wheelchair, handicapped parking spaces, and accessible bathrooms? “Yes, we need those things, but we should not be defined by these things any more than an able-bodied person’s reliance on ordinary aspects of daily living,” said Gillums.

What he wants credit for, he explained, is his ability to accomplish tasks, albeit differently than his able-bodied counterparts. This is a view that many veterans with disabilities share, particularly those who are young and are still maturing. “When they become disabled, it is challenging to get past the idea that [they] are less than a human being,” he said. This challenge can be made more difficult when other factors, such as race, culture, skills, gender, experiences, nationality, ethnicity, religion, language, sexual orientation, and thinking styles are added to the mix of things that can create uncertainty as he or she starts the journey as an individual with a new disability.

Gillums noted that he did not experience disparate treatment in the health care he received from the U.S. Department of Defense (DoD) and the U.S. Department of Veterans Affairs (VA). However, when he began his career with the Paralyzed Veterans of America, he had the opportunity to engage with and advocate for many veterans who did need help. It was

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3 This section is based on the presentation by Sherman Gillums, Jr., executive director of Paralyzed Veterans of America, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
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in those experiences, he recalled, that he began to appreciate what those undertones of race and ethnicity can mean for the care experience. “I’m not talking about somebody who goes into a hospital and receives lower quality of care because of race,” said Gillums. “There are other, less obvious ways that racial disparities manifest that are more insidious.”

In preparing to give this presentation, Gillums read a report from The Ohio State University titled The Double Burden: Health Disparities Among People of Color Living with Disabilities (Blick et al., 2015) that made him think about a young Navy veteran named Cedric who had received an early discharge when he was diagnosed with a personality disorder, which was later deemed to be schizophrenia. Cedric believed that his discharge had more to do with his race and his reaction to the racism he had experienced while in the Navy. As a result of the negative discharge he received, he was ineligible for VA care. Cedric came to mind because Double Burden pointed out that African Americans are disproportionately diagnosed with schizophrenia compared to someone who is not African American. In Cedric’s case, he spent much of the 15 years after his discharge being in and out of prison, and he literally had to break his neck and become paralyzed to finally become eligible for the full range of care from the VA based on the severity of his injury. Gillums, wondering if Cedric had been diagnosed correctly, came to appreciate the possible racial undertones of this veteran’s experience that affected his access to quality health care.

Another case that did not turn out as well involved a veteran named Harry, a former Army soldier who was honorably discharged and later broke his neck in an accident. While he did receive good care from the VA, he was limited in terms of the monetary and other ancillary benefits he could receive to support himself post-injury. At first blush, said Gillums, race appears to be a nonissue again. Except that when it came time for him to reintegrate into society, the only places he felt would accept him were those like his home in a low-income, crime-ridden part of Detroit. With just enough money to move from San Diego to Phoenix when he was unable to find a job in southern California, Harry settled in a crime-ridden neighborhood, giving him limited access to reliable caregivers. The last Gillums heard about Harry was when he was found dead in his car in his garage, his keys in the mailbox. Harry’s family had his body cremated and no investigation was undertaken to find out exactly what had happened to him.

He noted in closing that people of color have a higher likelihood of being a victim of crime, something that is likely exacerbated by being someone with a disability. His hope was that these two examples point to the need to look beyond the obvious. “I cannot say for certain that these cases were all about race, but I also cannot deny that race played a major role. It would be easy to miss the racial undercurrents if we do not pay attention or acknowledge them,” said Gillums.

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
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FAMILY AND CAREGIVER PERSPECTIVES4

When Karen Marshall’s mother developed stomach cancer, she took a leave of absence from her high-paying job as a government affairs attorney in Washington, DC, and moved 4 hours away to rural southern Virginia to become her mother’s primary caregiver. After her mother passed away, she returned to her job only to have her father suffer a torn aorta and a slow, subsequent slide into dementia. Reluctant to return to the family home and take yet another leave of absence, Marshall spent the next 3 years trying to balance her own household, her career, and long-distance caregiving, but eventually she decided to take an indefinite leave from her job and become the full-time caregiver for her father.

Before doing so, however, she took some advice to learn how to take care of herself so that she could take care of her father, and as part of that process Marshall studied yoga and other holistic health methods in India, where she learned about the kadamba tree. The kadamba tree, she explained, grows in Southeast Asia, and legend holds that it blossoms at the sound of monsoon thunder. Hearing that legend made her hopeful about caregiving again, for it reminded her that caregivers answer the call for help during a storm. Speaking about how she named the Kadamba Tree Foundation, Marshall said the legend became the symbol of the organization’s mission to empower individuals to blossom during caregiving challenges and to help them avoid some of the negative health outcomes associated with family caregiving. This blossoming is important, she said, because research suggests that caregiver perception of the caregiving experience has a positive impact on not only the caregiver’s own health and well-being but also the health and well-being of the person for whom they are caring.

One way in which the Kadamba Tree Foundation serves caregivers is by offering evidence-based caregiver interventions and other evidence-informed programs, as well as small-group programs that provide support, stress management, and information tailored to each caregiver’s needs. Marshall noted that the 2015 report Caregiving in the U.S. (AARP and NAC, 2015) estimated that more than 42 million Americans care for family members or friends, 62 percent of whom are white, 13 percent are African American, 17 percent are Hispanic non-white, non-African American, and 6 percent are Asian. Caregiving is provided by people across the life span (see the following list), including children, and they can be female or male. Caregivers vary with respect to their proximity to the people they care for and to the extent to which they are employed outside of the home, though one-third of all caregivers have full-time jobs outside

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4 This section is based on the presentation by Karen Marshall, founder and executive director of the Kadamba Tree Foundation, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

of the home. The amount of time caregivers spend assisting in activities of daily living, providing companionship and emotional support, managing medication adherence, coordinating care and providing transportation to and from medical appointments, and taking care of financial issues and support varies as well, though nearly one-third of caregivers spend more than 21 hours per week providing unpaid care. The duration of their roles as caregivers varies somewhat, “but most of them are in it for the long haul,” said Marshall.

  • The “typical” family caregiver is a 49-year-old woman caring for a relative.
  • 60 percent are female; 40 percent are male.
  • 82 percent care for someone living with or within 20 miles of them.
  • 34 percent are employed full-time; 25 percent are employed part-time; caregivers employed outside the home work on average 34.7 hours per week.
  • 32 percent provide ≥ 21 hours of unpaid care per week; on average, caregivers provide 62.2 hours weekly.
  • The typical higher-hour caregiver (≥ 21 hours/week) has provided care for 5.5 years and expects to do so for another 5 years.
  • Caregivers are vulnerable to emotional stress as well as physical and financial strains.
  • Caregivers want resources and tools to assist with managing stress (AARP and NAC, 2015).

Marshall noted that a number of studies show there are differences in caregiving associated with race and ethnicity. Citing research from the Alzheimer’s Association (Family Caregiver Alliance, 2016), Marshall said that ethnicity apparently increases the needs of care recipients and therefore caregiving tasks, as evidenced by the finding that 41 percent of African American caregivers are likely to assist with three or more activities of daily living, compared to 28 percent of white Americans and 23 percent of Asian Americans. She added that more than half of African American caregivers are caring for an older and younger person or multiple older people at the same time. Research has shown that ethnic minority caregivers provide more care and report worse physical health than their white counterparts (McCann et al., 2000; Pinquart and Sorensen, 2005). Several studies have found, though, that African American caregivers experience less stress and depression and garner greater rewards from caregiving than white caregivers (Cuellar, 2002; Haley et al., 2004) and that African American caregivers had lower levels of caregiver burden and depression than white caregivers (Pinquart and Sorensen, 2005).

Family caregivers, said Marshall, have become a vital part of the care

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

team and may often be relied on to provide continuity of care between medical appointments and after hospitalizations in particular, and that requires learning new skills, such as medication management and even dressing wounds. Family caregivers are often also tasked with communicating with health care professionals on behalf of their loved one, a lesson Marshall learned when she experienced her mother shutting down during medical appointments. One time, for example, she asked her doctor to tell her what stage her cancer was, and rather than telling her, the doctor told her to just focus on where she came from. “Where she came from was having the vast majority of her stomach removed and now she was facing a lot of treatment,” said Marshall. Rather than ask more questions, her mother just let it go, which was when Marshall realized that she was going to have to be her mother’s voice on occasion.

Marshall noted that her father, who had grown up in the segregated South and had been the victim of violent racism, did not always trust people who were not African American and did not see that collaboration with his wife’s doctors was important. Recently, she added, she had heard stories from African American parents of children diagnosed with autism who struggled to get their children diagnosed correctly. Often, she said, they reported that their children were treated as if they had a discipline problem rather than a health-related issue.

Caregivers, said Marshall, are often information gatekeepers, a point she illustrated by recounting an episode where her father’s blood work showed unexpected results for clotting times—her father was taking Coumadin after his aorta was torn. Upon making the 4-hour trip to see her father, she discovered that he had been drinking green tea, which she found through an Internet search can interact with Coumadin. “Depending on what community you are from and your socioeconomic status, you may or may not have access to the Internet, and even if you do, you may not be aware that there is reliable and nonreliable health information online,” said Marshall. “If English is your second language, that may be an additional obstacle.”

In closing, Marshall said that regardless of the different experiences caregivers may have, race is going to influence those experiences. “Race is going to affect how caregivers cooperate with other members of the care team, and cultural factors are going to influence how they perceive whether or not caregiving is a rewarding experience and whether it is something that is burdensome,” said Marshall. Regardless of background, family caregivers are vulnerable to emotional stress, physical strains, and financial challenges. They are often socially isolated and need resources and tools to assist them with managing those stresses. “When we think about the intersection of these different disparities when it comes to family caregivers with diverse backgrounds, it is always important to meet them

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

where they are,” said Marshall. While their perceptions and knowledge are shaped by their cultural backgrounds, she said, they are also people in the here and now. “It is important to meet them in that place to find out what they need and how to support them so they can take care of their loved ones,” she said.

RAISING A CHILD WITH MULTIPLE DISABILITIES5

Calling herself “the Mama Bear,” Diane Kearns described herself as a college graduate, the daughter of first-generation Americans and married to the son of a first-generation American, a fixer of injustices, a squeaky wheel, someone who believes that “No” means “Keep going until you get the answer you need,” and the mother of three children. Her older son was diagnosed early with paraventricular leukomalacia, a form of cerebral palsy, and at 12 months was diagnosed with a visual impairment. He received his first wheelchair at age 3, began experiencing seizures at age 8, and has had multiple surgeries in his 13 years of life. He is nonverbal, attends public schools, plays baseball, does gymnastics, kayaks, and paddleboards, and he zip-lined for the first time the previous summer at a sleep-away camp for children with disabilities. Born at 32.5 weeks with his twin sister, who has no disabilities, he came home from the hospital at age 6 weeks and began physical therapy soon after.

Raising children is hard, said Kearns, but raising a child with special needs is really hard. “You hear there is no manual for raising a child, right?” asked Kearns. “Well, there is no manual for raising a child with disabilities, either.” One way in which her family was lucky, said Kearns, is that their son had an early diagnosis, which meant that insurance would pay for specialists and therapies. Nonetheless, the cost of providing medical care for their son is significant, even with private health insurance. Particularly troublesome, she said, has been navigating the family’s high deductible health plan with its co-insurance and out-of-pocket maximums. Given that her family was solidly middle class, they did not qualify for Medicaid and could not afford to hire someone to take care of their son and his twin sister. As a result, her husband quit his job to care for the children, and she and her husband had to manage on one income while navigating the world of health care and insurance. “It was exhausting both mentally and physically,” she said, noting that the divorce rate among parents raising a child with special needs is between 70 and 80 percent and that she is lucky to have an easygoing spouse.

Kearns explained that one thing parents of a child with disabilities need

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5 This section is based on the presentation by Diane Kearns. Her statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

is respite from their job as caregivers. Kearns said she and her husband are lucky in that they live in the same Texas city as their relatives, who relieve them when they need a break. Still, she said, she worries constantly that she is not doing enough or that there is some treatment she has yet to hear about that could help her son. “It is frustrating. There is a lot of crying,” said Kearns. While those and other issues affect all families raising a child with disabilities, those issues are often amplified for minority families and those with low education or low income, she added.

One comment she has heard from family members of racial and ethnic minority groups, and one she can relate to, is the fear that nobody will be able to take care of their child as well as they can. This may cause them to miss opportunities to learn from educators, therapists, and aides. She has also heard the fear that their child will be the object of ridicule or that they will be perceived as stupid for asking questions relevant to the care of their child. Communication can be a barrier, particularly for families in which English is not the primary spoken language, as can the reluctance to accept help.

Turning to the subject of Texas’s Medicaid Waiver programs, Kearns said their intent is to keep children with disabilities in the community. Many of these programs are based on the child’s income, which in her son’s case is zero. “This was like hitting the lottery,” said Kearns. “We did not have to fight with the insurance company anymore.” Suddenly, the family was eligible for respite, attendant services, and home and vehicle modifications. Unfortunately for most families, there are more than 100,000 Texans—children and adults—on the Medicaid waiver interest list, so the waiting time to receive benefits can be long. As of March 2016, there were 18,221 people on the interest list for the Medically Dependent Children Program (MDCP), 55,874 on the Community Living Assistance and Support Services (CLASS) program list, and 77,379 on the Home Community-Based Services (HCS) program list. Over the past 2 years, 448 people were enrolled in MDCP, 155 in CLASS, and 1,308 in HCS, Kearns noted, and even for those who get on a waiver program, there are many necessary items not covered, such as ramps and lifts.

Kearns said the first steps to help families caring for children with disabilities should be to remove the barriers for care and cover basic medical needs. “Families need primary care physicians, not just visits to the emergency department,” said Kearns, who reiterated the problem of middle-class families not qualifying for Medicaid and how lucky her family was when her son was accepted into one of the waiver programs. Also potentially needed is more access to prenatal care for high-risk populations, particularly for teen mothers. “We need genetic testing, ultrasounds, and vitamins,” said Kearns. “There is so much we can do for that population.”

Another potential need is for better communication, including mul-

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

tilingual translations of information. Kearns believes that mobile phones and translation devices could be put to better use to help families that do not speak English as their primary language. She also called for creating centralized sources of reliable information that families can access via the Internet and sharing information on scientific breakthroughs that might help minimize the debilitating effect of a child’s disabilities. Parent resource groups could be good partners in such efforts.

In closing, Kearns said health care systems need to better coordinate care for children with disabilities; far too often, parents have to handle all of the coordination on top of providing care for their child. Health care systems also need to consider adding more psychiatrists and specialists, and states need to have more doctors assessing special needs children for Medicaid qualification. Her son, she explained, was assessed by an obstetrician/gynecologist in his MDCP denial review. Kearns added that payment policies are in need of upgrading too. In Texas, which ranks 50 out of 51 in terms of quality of life for people with disabilities, wheelchairs are covered under Medicaid but not the seat, a seat belt, or brakes, and wheelchair lifts and personal computers are covered but ramps and iPads are not. She also pointed out the need to address the transition to adulthood.

DISCUSSION

Ned Calonge from The Colorado Trust asked the panelists if they had any ideas on how to address the additional burdens that individuals with disabilities face when they live in rural areas. Gillums replied that the VA is trying to remedy this situation by bringing care to veterans using mobile health care units. These mobile units cannot deal with every type of disability, but they do provide examination and diagnostic capabilities to make sure there are no indications that more care is needed. For paralyzed veterans, there are groups that will find a way to get those disabled veterans to the health care facility. One problem he sees too often is that veterans in rural areas will wait too long to get medical help for a problem. He noted that when veterans are taken to a hospital in an emergency situation, their organization, which has chapters all over the country and in Puerto Rico, can get them transferred to a VA facility, something that the VA does not do automatically.

Kearns agreed that this is a challenge in Texas, and one thing that the new State of Texas Access Reform (STAR) Kids program is trying to do is secure more doctors in underserved parts of the state to participate in this managed care program and to give nurse practitioners the ability to approve certain types of durable medical equipment. Marshall added that her parents lived in rural Virginia, and she had to hunt to find the resources available within their region of the state. At one point, she said, she called the

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

social services department in her parents’ county to find out how to access the Program for All-Inclusive Care of the Elderly (PACE). Nobody knew what she was talking about, even though people in that county were eligible for the program. It was only when she went to the social services office in a neighboring county that she was able to get the information she needed.

An unidentified participant, commenting on the difficulty of identifying available resources, said that there are many nonprofit organizations that could provide such resources, but there is no clearinghouse for who does what in the nonprofit world to support respite care, parents of children with disabilities, and other pieces of the support infrastructure. Another participant added that some efforts are under way to create that type of clearinghouse. In Boston, for example, programmers are building an app for hospital systems to use to identify appropriate nonprofit services for their patients. This effort is also working on using the geotracking function in mobile phones to map where consumers receive satisfactory assistance from these external support resources.

An unidentified participant from the VA noted that the VA does have centers for spinal cord injury that work on a spoke-and-hub model, given that it is impossible to site that type of comprehensive care center everywhere it is needed. While the spokes do not extend to all rural areas, they do allow for case coordination that can arrange for transportation, caregivers, and other support for veterans—including connecting them with local chapters of Paralyzed Veterans of America—who need care for a spinal cord injury. This participant added that the VA has a disabilities program that allows veterans with service-connected disabilities to receive benefits and arranges for suitable housing. Gillums commented that he was connected to the spinal cord injury hub in San Diego for 10 years and received excellent care that enabled him to be where he is today. “It takes partnership,” said Gillums. “The government cannot do everything by itself. You need the corporate sector and the social services sector to also intervene.”

Susan Aarup from Americans Disabled Attendant Programs Today (ADAPT), commenting as a person born with disabilities, said that often the parents of children with disabilities go to great lengths to create what she referred to as the “perfect child” without consulting the children when they are old enough to express an opinion. “I cannot stress this enough—talk to the people you are assisting because they know best,” said Aarup. “Remember, if they cannot communicate, they will find a way to tell you what they want.” Kearns agreed completely with that idea and agreed that she knows exactly what her son is trying to communicate to her.

Bernard Rosof from the Quality in Healthcare Advisory Group asked Kearns to comment on how her son’s disabilities affect her other children. Kearns replied that her daughter is turning into a mama bear too, and is very protective of her twin brother. Her younger son does not quite under-

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

stand that his big brother has a disability, which she said is both a good and bad thing. “There is a tight-knit relationship among all three of my children, and I fully expect them all to grow up and change the world and make it better for people with disabilities,” she said.

Rosof also asked Gillums if he thinks posttraumatic stress disorder (PTSD) is a paralyzing disability and if there are any equity issues he knows of related to PTSD. Gillums replied that he has never seen a case where PTSD causes paralysis, but added that his wife, who served in Afghanistan and has been diagnosed with PTSD, does “lock up” when exposed to a trigger that reminds her of the suicide bombings she witnessed there. With regard to disparities and PTSD, Gillums said that there is some disparity in the population of female veterans who have served in war zones. The VA is evolving for the better, he added, though he knows several women who do not want to go to a VA for care because they do not feel that it is a fit for them. “I do think we could do a lot more and improve access to care for women veterans, and in particular where PTSD is concerned,” he said.

Uche Uchendu from the VA Office of Health Equity remarked there is published research documenting disparities in the way males and females are evaluated and treated (Sayer et al., 2014) and that this issue is on her office’s radar. She added that there are issues related to race and ethnicity and the diagnosis and treatment of PTSD, particularly with regard to people wanting care and the stigma attached to PTSD.

Francisco García commented that Kearns’s remark about needing to consider the transition to adulthood points to a critical issue: While there are programs to provide the resources needed to help children with disabilities thrive, there are few mechanisms for facilitating transitions that are lifelong and sustainable. “As we think about the social determinants of health and well-being, the ability to keep and maintain a job and the ability to manage one’s own affairs is going to be really central to that,” said García. In the same vein, he said it is important to consider the reproductive health needs of individuals with disabilities. A gynecologist by training, García said that reproductive care is lacking for individuals with disabilities, either because of the assumption that they are not sexual or that they are not functional. Silvia Yee added that another difficult transition for individuals with disabilities occurs when moving from one job to another and coordinating benefits on a new insurance plan with needs. This same transitional challenge can also occur when moving from Medicaid to Medicare, Yee noted.

Jennifer Dillaha commented on the challenge of finding reliable information and distinguishing between reliable and unreliable information as an important piece of health literacy. She asked the panelists if they thought public libraries could play a role in helping people get good information about disabilities and caring for individuals with disabilities.

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

Marshall responded that the National Library of Medicine funded a project her organization conducted with District of Columbia public libraries to teach caregivers about reliable sources of information available through the National Library of Medicine. She noted that community-based groups do inform caregivers about using Medline Plus at their local libraries and said caregivers she has worked with have found it very useful to have someone from a regional office of the Library of Medicine give a presentation to caregiver groups about different reliable resources such as Medline Plus. Yee noted two cautions regarding library use: the difficulty visually impaired individuals may have using a library computer and the challenge some users who are not familiar or comfortable with using a computer may have saving information they find on the Internet.

Antonia Villarruel added that nursing students are getting more involved with libraries and can serve as a conduit for introducing caregivers to reliable online resources. She also noted that local libraries can have access to the National Library of Medicine and serve as an information hub for caregivers. Kearns remarked that many community-based groups are hesitant to bring in someone to talk about health information because of the worry about unreliable information. “Having a source of health information that has been vetted by the National Library of Medicine can give those organizations some confidence in being able to get resources out to the community,” said Kearns.

A participant from the Office of Minority Health in the assistant secretary’s office asked Kearns if she had encountered any models that would help with transitions. Kearns replied that one of the focus areas for the STAR Kids committee in Texas is to improve transitions for children with disabilities. In her opinion, there should be approaches based on information technology that could ease transitions and make it easier in general for individuals with disabilities and their caregivers to manage their health care. Marshall added that one of the most effective things that care teams—both family caregivers and professional health care providers—can do is embrace the fact that they are a team and learn how to communicate with each other.

As an example of how helpful communication can be, she mentioned the Rosalynn Carter Institute for Caregiving’s Caring for You, Caring for Me program,6 an evidence-informed program that sits health care professionals and family caregivers in the same room and, over a five-course workshop, teaches them how to communicate. One feature of this program is that it gives both the caregivers and the health care professionals an opportunity to share experiences and to understand that they have similar challenges in terms of burnout and being overwhelmed by their respective

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6 See http://www.rosalynncarter.org/caring%20for%20you (accessed October 10, 2017).

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×

caregiving tasks. “It helps when they get together and talk about what they have in common, and they can begin to see themselves as part of a team and how they can access and develop resources together, how they can solve problems, how they can understand each other’s perspective,” said Marshall. She acknowledged that not every care team is able to sit through a five-workshop series, but she would like to see online resources developed that would enable these two groups to communicate, understand each other’s needs and commonalities, and learn how they can work together.

Wilma Alvarado-Little recounted that when she and her siblings had to care for their parents they were fortunate both to have one another to help and to have employers who understood what kind of support they could provide to give them time to care for their parents. She asked the panelists if they had any recommendations that would help employers become more literate regarding such situations. Gillums replied that Paralyzed Veterans of America, in collaboration with the Elizabeth Dole Foundation, published a handbook for employers that helped make the business proposition for hiring individuals who might also be caregivers. The handbook also provided advice on how businesses can help caregivers manage some of the challenges of working and caring for a family member with a disability. He also noted the importance of peer mentoring.

Simon added that caregivers often have useful skills that they have developed while caring for a loved one that they or their employers may not see or understand. This may be particularly true in low-income families. “Helping them to see the path of using their lived experiences and the talents they have learned while caregiving can lead to a new path in the workforce that can help both the economic resilience and the socioeconomic position of families,” she said.

Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
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Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
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Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 24
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 25
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 26
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 27
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 28
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 29
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 30
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 31
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 32
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 33
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 34
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 35
Suggested Citation:"3 Voices of the Community." National Academies of Sciences, Engineering, and Medicine. 2018. People Living with Disabilities: Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24741.
×
Page 36
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Poor health literacy has many negative consequences for achieving the quadruple aim of better care, improving the health of the community and the population, providing affordable care, and improving the work life of health care providers, and those consequences disproportionately affect those individuals with disabilities and those who experience health disparities. To better understand how health literacy, health equity, and health disparities intersect for individuals living with disabilities, the Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities and the Roundtable on Health Literacy jointly sponsored a workshop that was held on June 14, 2016, in Washington, DC. This publication summarizes the presentations and discussions from the workshop.

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