Disability stories: personal perspectives of people with disabilities on navigating the U.S. health system

Abstract

Americans with disabilities and chronic illness or injury tend to be in poorer health, use more health services, and pay more for healthcare than those without disabilities. Consequently, their lives can be profoundly affected by federal and state health policies. The concerns of this population do not figure prominently in national health policy discourse and related public health and health services research efforts. This study sought to give voice to the lived experiences of people with disabilities as they navigate a fragmented U.S. healthcare system. We interviewed 30 adults who self-identified as having a disability and spoke or otherwise communicated in the English language. Directed content analysis was used to examine words and phrases in professionally transcribed documents by experienced qualitative researchers. We report and discuss four themes from the perspective of the participant, presented in thematic statements, related to vocation, finances, stressors, and advocacy.

Points of Interest

• It is critical to include people with disabilities and chronic illness or injury in national conversations about health policy because their lives can be greatly affected by it.

• The current definition of disability and models to explain thinking about disability are widely contested and debated by people with disabilities.

• Americans with disabilities desire to have a fulfilling work life, but find it hard to maintain full time regular employment due to a lack of insurance.

• American people with disabilities live with constant financial pressure and may not enjoy the retirement that others imagine for themselves.

• Navigating various insurance programs results in a great deal of stress for Americans with disabilities.

Keywords:

• Disability
• policy
• healthcare
• insurance

Acknowledgements

The researchers would like to acknowledge the contributions of Cyndy Cole and Jason DeSilva, the media consultants on this project.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was conducted with support from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90DP0075-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this report do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.