Legal and policy approaches can be important tools for achieving healthier communities. A new report—The Role of Law and Policy in Achieving Healthy People’s Disability and Health Goals around Access to Health Care, Activities Promoting Health and Wellness, Independent Living and Participation, and Collecting Data in the United States—provides evidence-based information and identifies priority areas that can help communities achieve Healthy People objectives.
This Bright Spot discusses how better data collection and policy changes can help improve the health of American Indian and Alaska Native (AI/AN) people with disabilities.
Challenge: Poor health outcomes for American Indian and Alaska Native people with disabilities
American Indian and Alaska Native (AI/AN) people have a lower life expectancy and higher rates of disease compared with the general U.S. population.1 People with disabilities also experience significant disparities in health outcomes2—meaning AI/AN people with disabilities may be at an even higher risk. In spite of major structural challenges, law and policy have helped to improve health outcomes for this population—but challenges remain.
Research involving AI/AN people with disabilities has shown an important connection between their culture and their health.3,4 In fact, strong connections to culture, family, and community can actually reduce the risk of chronic diseases in AI/AN communities.5 In one study, Molly Fuentes—a physiatrist and assistant professor at Seattle Children’s Hospital—investigated the experiences of AI/AN children with disabilities receiving rehabilitation services. She found that these children faced barriers to participating in cultural activities, and the rehabilitation services they were receiving didn’t adequately address these barriers.
Because of the connection between culture and health for AI/AN people with disabilities, incorporating cultural perspectives into health care has been an important strategy in improving their health outcomes.6 But barriers to progress remain, including a significant lack of national data on AI/AN people with disabilities.
Strategy: Bridge gaps in data
Reliable data serve as a starting point for developing better policies and programs. Including standardized questions about disabilities in national surveys and data sources can produce more accurate and nuanced disability data. But historically, people with disabilities haven’t been adequately included in health data collection and reporting.7 And AI/AN people are underrepresented within this already inadequate dataset, says Fuentes. This makes it hard to understand the health disparities at play.
To help bridge this data gap, Fuentes has been analyzing clinical data within tribal health care systems. As part of this work, she collaborated with the Northwest Portland Area Indian Health Board to look at data from clinics funded by the Indian Health Service (IHS).
Fuentes and her research partner, Dr. Tom Weiser, have analyzed clinical diagnosis codes for AI/AN children using an algorithm developed by Dr. Alyna Chien, a pediatrician and assistant professor of pediatrics at Harvard Medical School. This algorithm allows Fuentes to track clinical encounters involving diagnostic codes related to disability.
By collecting better data, researchers can help guide efforts to provide better care. “I’m interested in how those potentially disabling conditions impact people,” Fuentes says. “How do we help make sure that rehab services are partnering appropriately with Native people and Native communities to help them optimize their participation in the things that matter to them?”
Strategy: Build on policy to remove barriers
In addition to the data gap, there’s also a law and policy gap around guaranteeing access for AI/AN people with disabilities. Because tribes are sovereign nations, federal policies like the Americans with Disabilities Act may not always be fully implemented or enforced on tribal lands. Ultimately, Fuentes says, it’s up to tribal governments and individual communities to protect the rights of people with disabilities8—and to promote their full inclusion in the community.
Fuentes offers an example from her experience, explaining that one of her patients wasn’t able to access a community space that was central to her tribe’s cultural activities. A ramp led into one side of the building, but a door separating that side from the community space was often locked, cutting off her patient’s access.
“My follow-up question was, ‘Who has the key to that door?’” Fuentes says. She explains that participating in cultural activities is key to patients’ health, and that the solution to removing these barriers is raising awareness about the role of communities to protect disability access. And sometimes, even simple changes can help communities make reasonable accommodations and improve access to services for people with disabilities.
Some AI/AN communities have developed programs that help fill these policy gaps by empowering people to advocate for themselves and their families. For example, the EPICS program in New Mexico offers free trainings about accessibility protections for students, like the Individuals with Disabilities Education Act (IDEA). Community-based initiatives like these can help AI/AN people with disabilities access education, cultural activities, and other opportunities they need to live full, healthy lives.
Looking Ahead: Include the perspective of AI/AN people with disabilities
Many tribes are working to improve health outcomes for AI/AN people with disabilities through data collection and advocacy. When considering future law and policy issues, the perspectives of tribal members and leaders with disabilities will be very valuable.9
Fuentes’s work to develop a model of culturally relevant rehabilitative care is an example of how to include these experiences. She’s currently working with people with disabilities, their parents and caregivers, rehabilitation providers, and other community members from across the country. Through these collaborations, Fuentes hopes to identify the key components of a culturally relevant rehabilitation service model that can be tailored to meet every community’s needs.
“The model is being developed with Native children in mind,” she says. “But I think it will be adaptable to Native people of all ages.”
About the Law and Health Policy Project
The goal of the Healthy People Law and Health Policy project was to highlight how evidence-based legal and policy interventions and strategies can facilitate progress toward Healthy People 2020 targets by improving community health and well-being. In addition to reports and webinars, the project included "Bright Spots," or success stories, that highlighted successful policy interventions that led to improved health outcomes. The project was a collaboration between the HHS Office of Disease Prevention and Health Promotion (ODPHP), the Centers for Disease Control and Prevention (CDC), the CDC Foundation, and the Robert Wood Johnson Foundation.