Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

The federal Healthy People 2010 initiative calls for the elimination of long-standing disparities in health status that exist among segments of the population, including disparities that occur by race or ethnicity (U.S. Department of Health and Human Services, 2000). Health disparities in relation to persons with disabilities have been amply documented, as have disparities by gender, race or ethnicity, education or income, geographic location, or sexual orientation. However, only limited research has examined the cumulative effect of multiple risk factors for disparities. What happens, for example, when disability intersects with culture? Some studies, while providing qualitative research on quality of life concerns for persons with disabilities, fail to address the effect of cultural differences within the research design. Even a landmark forum by three large federal agencies, seeking to bring visibility to the issues of health and well-being for people with disabilities, failed to address the importance of culture in contributing to health and well-being (Centers for Disease Control and Prevention, 2003).

In order to provide persons with disabilities from diverse cultural groups with health care that is effective and coordinated, we first need to understand the relative roles of disability and culture in health disparities that exist. Hawai’i, a state long recognized for its diversity and without an ethnic majority, provides an ideal laboratory to examine how these multiple factors may influence health disparities among persons with disabilities.

Questions From Hawai’i

 We know that in measures of preventive health care, people with developmental disabilities living in Hawai'i rank poorly. Since 2001, the state has participated in the Core Indicators Project conducted by the National Association of State Directors of Developmental Disability Services and the Human Services Research Institute. Data have been collected by interviews with clients or care-givers for each of the health indicators as shown in Table 1 (Fray, 2004). In the first year, Hawai’i ranked lowest of all states. This result continued in the second year of participation, with the ranking of Hawai’i actually being lower than for the previous year of participation. Clearly, there is a problem in the area of health care and health status for persons with disabilities.

In Hawai’i, significant differences have been found in health status across cultural or ethnic groups. For example, persons of Hawaiian ancestry have the highest percentage of low birth weight babies and adolescent pregnancies (Hawai’i State Department of Health, 2002). An examination of cancer screening by subgroups of Asian American and Pacific Islander (AAPI) women has found evidence of disparities in the receipt of cancer-screening services; AAPI women are less likely to receive cervical and breast cancer screening (Chen et al., 2004; Tan, 1999). Furthermore, Southeast Asian, Korean, and Chinese women have been found to have the lowest Pap smear rates of all AAPI women, a finding consistent with observed higher cervical cancer rates among Southeast Asian women (National Center for Health Statistics, 2002). Clearly, there is a need to understand why disparities such as these exist; there is a need to examine the interaction between practices and expectations in the health care delivery systems, and the cultural backgrounds and values of those delivering and receiving health care.

What is not known is the degree to which there are overlapping influences in these examples and in the core indicators data. Did cultural factors influence the core indicators health data for persons with developmental disabilities? Does the data reflect primarily disability-related issues, culturally-related issues, or both? What are the relative contributing factors for each? And what is the impact of culture and ethnicity on the development of chronic diseases among persons with disabilities? Such questions have yet to be adequately answered in Hawai’i and elsewhere.

In addition, Hawai’i, as elsewhere, has moved from a paradigm that viewed disability as a medical problem requiring medical management with the goal of “fixing” the problem (medical model), to a paradigm that views disability as a product of interactions between multiple individual characteristics (social model). It is not known how this paradigm shift from a medical model to a social model differs across cultural groups.

All of the questions identified above must be addressed if effective strategies for health care delivery for persons with disabilities, including care coordination, are to be designed and implemented.

Table 1. Core Indicators Health Datafor Persons with Developmental Disabilities: Hawai'i and the Nation​

Millie’s Story 

It was difficult to understand Millie. Her speech was laborious because of cerebral palsy and even worse because calcium deposits on her vertebra affected her neck muscles. The staff at Rehab was kind, but in a hurry. Many had been trained in another country and spoke English as a second language. However, the language difference was less important than the attitudes the caregivers brought with them from their culture. Their previous experiences and expectations led them to think that anyone with difficulty communicating had significant cognitive limitations. Millie tried to ask them to warn her before they lifted her stiff hands so she could prepare herself. They smiled and nodded but didn’t understand. So they picked up her hands without warning. Millie yelled loudly. Millie’s mom would visit and the nurses would ask her how Millie felt. Mom reassured the nurses they were doing a good job, but she didn’t tell them to listen to Millie. Even Millie’s mother was a part of the cultural divide; as a Pacific Islander she was not able to be critical of caregivers and sought to avoid confrontation. So Millie yelled.

Finally Millie complained to a friend, “They only see the physical, not inside you.” They decided to provide a little education. They wrote down all the words Millie had to say and posted them on the walls of Millie’s room. They wrote ideas like, “When you don’t understand, ask me to repeat. Two or more times if necessary.” They wrote, “No pureed food!” They wrote, “Millie is not deaf or dumb. She respects your intelligence, please respect hers.” Over time, her room was covered in words. The staff was amazed. They began to respect her, and working together Millie finally left the hospital. She never reached her goal of walking again, but she did regain her self-respect and dignity.

Finding Answers

If the nation is to achieve the Healthy People 2010 goals of reducing health disparities, and if individuals such as Millie are to receive the quality health care they need, a great deal of work must be done during the last half of the decade. Some questions that demand to be addressed are as follows:

• What barriers to health and wellness for persons with disabilities exist by cultural group? How do they differ by specific disability?
• How do cultural beliefs and attitudes of health care providers and consumers contribute to health disparities for persons with disabilities?
• What is the impact of income and education on the health status of persons with disabilities across cultural and ethnic groups?
• What is the extent of chronic illnesses among persons with disabilities and how does this differ by culture or ethnicity?
• What are the differences in anticipatory guidance and preventive services provided to persons with disabilities across different cultural groups?
• How do people with disabilities from different cultural groups approach issues of physical energy, pain management, and personal control?

In Hawai’i, we are aware of the health disparity issue and are actively seeking resources to begin to answer the questions posed above. One of the areas we’re addressing is ensuring that the data gathered through the Healthy Hawai’i 2010 project includes data on persons with disabilities across cultural groups. The questions and issues raised in this article are not relevant just to Hawai’i. There are individuals like Millie everywhere. There is a need to find ways everywhere to gather the data that will illuminate the relative roles of disability and culture, separately and in interaction, in health disparities that exist in this country, and then to shift health care practices accordingly.