People Living with Disabilities Health Equity, Health Disparities, and Health Literacy: Proceedings of a Workshop (2018) / Chapter Skim
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3 Voices of the Community
3 Voices of the Community
Pages 23-36
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From page 23... ...
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.
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From page 24... ...
"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.
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From page 25... ...
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.
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From page 26... ...
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.
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From page 27... ...
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.
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From page 28... ...
"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.
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From page 29... ...
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.
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From page 30... ...
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.
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From page 31... ...
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.
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From page 32... ...
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.
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From page 33... ...
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.
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From page 34... ...
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.
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From page 35... ...
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.
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