Carol remembered liking school when she was in kindergarten. Her teacher was so nice, and it was fun to come and play with the other kids in the class. At home, she had never had a chance to use paints or make things out of clay. Carol’s family was poor, and they did not have money for extras like arts and crafts materials. In first grade, Carol started to be very frustrated in school. It seemed to Carol that everyone else was learning to read and write much faster than she. Carol really hated when her teacher called on her to read aloud. In second grade, Carol would wake up with a bad stomachache on school days and begged her parents to let her stay home.
By fifth grade, Carol’s teachers were talking to her parents about making her repeat the grade. The teachers told Carol’s parents, Mel and Sylvia, about their daughter having a learning disability. Mel and Sylvia thought the idea that Carol had a disability was silly—she could walk and talk and was an intelligent girl. They did not see anything that seemed like a disability to them. Many of their family members had had a hard time in school, and they would give Carol a good “talking to” about trying harder.
By the time Carol was 16 and in high school, she still hated school. Carol would show up for her math class (she had always done well in math) and maybe home economics. Otherwise, she would frequently cut class and sneak off with her friends. Toward the end of the school year, Carol fell in love with one of her friends who also cut class. Bill was tall, handsome, and seemed to her to be the funniest person she had ever met. They frequently sneaked back to Carol’s house during the school day while her parents were at work, and soon they were having sex. Within a few months, Carol was pregnant. Since Carol did not really like school any way, she was relieved to have a reason to drop out.
When her son, John, was born, Carol was very excited, but worried about where they would live and how she could financially support John. Bill and his family moved away at the end of the school year. Mel and Sylvia told their daughter, “We don’t have much, but you and the baby can stay here.”
Mel had recently stopped working at the local factory because of emphysema. He applied for and received disability payments. Mel still had not managed to stop smoking and often felt very poorly, so he was home most of the day. Sylvia was also at home, where she now tried to augment their decreased income by providing beauty salon services in their basement. Since they were both available at home, Sylvia and Mel agreed that they would take care of John while Carol worked. Carol is now a single mother with little education and no work experience.
Carol’s lack of a high school education had an impact on the financial status of both her and John. A higher percentage of young adults (31 percent) without a high school diploma live in poverty, compared with the 24% of young people who finished high school and 14% of those with a bachelor’s degree or higher.1
Carol found a job at a local fast food restaurant. She was a hard worker, so her manager encouraged her to enter the management training program in their company. Carol was afraid to try it—she was sure it would be like school with a lot of reading and writing, and she did not want to embarrass herself by failing.
When John was 2 years old, Carol came home to find her parents very upset. John seemed to be having trouble breathing and was making loud noises when he did breathe. She rushed him to the hospital, and the doctors told her that he was having an asthma attack. John seemed much better after the doctors at the hospital gave him some medicine. The doctors told her to take John to see his pediatrician the next day for ongoing care. Children with asthma are considered to be Children with Special Health Care Needs (CSHCN).
Carol was not sure what to do. Based on the National Survey of Children with Special Health Care Needs (NS-CSHCN), 21.6 % of children with special health care needs whose family members have less than a high school education had no usual source of sick or well care in comparison with only 13.1% of children whose families have graduated from high school and 8.2% of those who had more than a high school education.2 John did not have a pediatrician whom Carol took him to see for regular care. When John was sick, Carol usually took him to one of the clinics at the local pharmacies.
DATA ALERT: This variable combines information for the mother and/or father and/or other guardian who has the highest level of education attained in the household.Graph Source 2
The doctors also gave Carol several prescriptions and written information about how to take care of John’s asthma. Carol glanced at the pages and quickly stuffed them into her purse. There were a lot of long words, and she still struggled with reading. Like 55% of adults in the United States in the most recent National Assessment of Adult Literacy, who did not graduate from high school, Carol had prose reading skills below the Basic level.3
Since John seemed fine, Carol also stuffed the prescriptions into her purse. Medicines were expensive, and she figured that the doctors in the emergency room had cured John’s asthma. So she took him home and tucked him in bed. Seventy-seven million adults in the United States have difficulty with common health tasks because of limited health literacy. Health Literacy is defined in the Institute of Medicine report, “Health Literacy: A Prescription to End Confusion,” as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” 4 This capacity includes being able to access health information, communicate with health care providers, and navigate the health care system as well as having conventional literacy skills. Like 49% of individuals with less than a high school education, Carol had below basic health literacy skills. She did not understand the concept that asthma was a chronic condition, nor did she know how to interact with the emergency room doctors in a way that she could get the information she needed.5
A few days later, Carol came home to a similar scene. Her parents were frantic that John was having trouble breathing, so she and John went back to the emergency room. The doctors there seemed annoyed that she had not followed up with John’s regular doctor. Finally, one asked Carol whether John had a doctor he saw for well child check-ups and for sick visits. When Carol said no, a social worker came to talk with her about finding a medical home for John. Because Carol worked only part-time, she did not have health insurance coverage for herself or John.
CSHCN who live in a household in which the adult caretaker has less than a high school education (15%) are about twice as likely to have one or more periods in the previous year without insurance. This is the case, compared with those with an adult in the household who has more than a high school education (7.4%).2 Carol explained to the social worker that she could not afford a doctor most of the time. The social worker got her an appointment at the pediatric clinic in the hospital and gave her some forms to complete to see whether John qualified for Medicaid to cover his health needs. Again, Carol stuffed them into her purse—they seemed too hard for her to fill out.
Carol and John kept the appointment in the pediatric clinic, and a social worker helped her complete the forms for Medicaid coverage. When the doctor examined John, she explained to Carol that John’s asthma was not like a strep throat, but was a chronic condition. John would need to take medications frequently. The doctor told Carol that she would have to make sure that her house was free of anything that might trigger the asthma. The doctor also told Carol that John would also need an appointment in the allergy and asthma clinic down the hall. Carol thought the appointment with the doctor went so quickly. Carol did not feel comfortable giving John what she considered “a bunch of medications,” and she was not sure why she and John had to go to yet another doctor.
On the NSCHSN, 27.4% of family members of CSHCN needs with less than a high school education reported that their health care providers did not discuss the range of options for their children’s care, compared with only 16.4% of those with more than a high school education.2
DATA ALERT: This variable combines information for the mother and/or father and/or other guardian who has the highest level of education attained in the household.Graph Source 2
Over the next few years, John continued to have frequent asthma attacks. The doctors kept talking to Carol about “environmental triggers.” John should not be around anyone who smoked, but Carol’s father smoked and wouldn’t stop. Also the fumes from her mother’s hair salon in the basement wafted upstairs and could trigger John’s wheezing. And then there was the house—it was old and dusty, and there was mold in the bathrooms. As reported in the National Survey of Children’s Health (NSCH), families with children who are living at 0-99% of the federal poverty level (FPL) are 3 times more likely (22.8%) than families whose incomes are at or higher than 400% of the FPL (7.4%) to report that their neighborhoods contain poorly kept or dilapidated housing.6
DATA ALERT: This variable combines information for the mother and/or father and/or other guardian who has the highest level of education attained in the household. Graph Source 6
Carol and her family were poor. Carol’s parents could not move out of the house, and she could not afford to move out on her own. For a variety of reasons, including environmental issues, families whose incomes were at 0-99% of the FPL were significantly more likely to rate their child’s asthma as severe in comparison with those with incomes at or higher than 400% of the FPL (5% vs. 1.4%).2
DATA ALERT: This variable combines information for the mother and/or father and/or other guardian who has the highest level of education attained in the household. Graph Source 2
When John began school, he was frequently absent because of health issues. John’s teacher called Carol in for a conference in the early spring of third grade to let her know that he would have to repeat the third grade. John was behind academically, because he missed so much school. Children with SHCN are more than twice as likely as those without SHCN to repeat a grade in school (18.5% vs. 8.2%).6
DATA ALERT: This variable combines information for the mother and/or father and/or other guardian who has the highest level of education attained in the household. Graph Source 6
Medical or behavioral conditions are also more frequently reported to interfere with school attendance for children whose families’ incomes are at 0-99% of the FPL (23.8%) in comparison with those at 200-399% of the FPL (8%) or 400% of the FPL or more (7.8%).6
DATA ALERT: This variable combines information for the mother and/or father and/or other guardian who has the highest level of education attained in the household. Graph Source 6
Where will John’s life course take him?
John’s health is clearly not optimal. Yet the source of his poor outcomes does not lie simply in the biology of asthma or even in the immediate nature of the care he receives. John’s health and overall well-being were set in motion by the events in the lives of his grandparents and his mother. Mel and Sylvia lacked the health literacy to understand Carol’s learning disability. The professionals in Carol’s school did not adequately partner with Mel and Sylvia to help them understand and support Carol’s learning needs. These factors impacted Carol’s academic achievement. Carol’s lack of reading and writing skills and a high school diploma limited her job opportunities and income. As a result, Carol and John had to live with her parents, even when the environment was detrimental to John’s health. In addition, Carol had both low literacy and health literacy skills that limited her capacity to address John’s health needs. Carol struggled to deal with information about his diagnosis and treatment that was, too often, provided in written format. Because the services Carol received were not linguistically competent (see Box 1), John’s health was negatively impacted. Perhaps because of perceptions and biases of health care providers, as a single mother who was poor and lacking in education, Carol did not receive full explanations of the options and reasons for treatments for John. Finally, because of his poor health status, John is now having academic problems that will impact his life and perhaps that of the next generation.
Linguistic competence is defined by the National Center for Cultural Competence as: The capacity of an organization and its personnel to communicate effectively, and convey information in a manner that is easily understood by diverse groups including persons with LEP, those who have low literacy skills or are not literate, individuals with disabilities, and those who are deaf or hard of hearing. Linguistic competency requires organizational and provider capacity to respond effectively to the health and mental health literacy needs of populations served. The organization must have policies, structures, practices, procedures, and dedicated resources to support this capacity.
Goode T, Jones W. Linguistic competence: definition. Available at: http://nccc.georgetown.edu/foundations/frameworks.html.
Accessed May 20, 2014.
