The CACTI Blog: Exploring Policies That Affect Cancer Care Access for People with Intellectual and Developmental Disabilities

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Sonoran Center Trainee
Esha Mahur, wearing a black top, standing in front of a brick wall and smiling

By Esha Mathur, 2024-2025 Undergraduate Certificate in Developmental Disabilities

Almost 2 million people in the US are currently diagnosed with some form of cancer, with a large number due to environmental, occupational, or lifestyle factors. People with intellectual and/or developmental disabilities (IDD) have the same risks for cancer as the general population, and are diagnosed with cancer at the same rate as the general population. However, they may experience worse cancer-related results1, 2. Studies show the life expectancy of people with IDD has increased, largely due to better healthcare1, 3. As this population ages, it is important to address diseases that become more common with increasing age, like cancer.

There is not much information on how health-promoting federal and state policies influence the cancer outcomes of people with IDD. Many individuals with IDD receive their health care services from both Medicare (a federally-run system) and Medicaid (a state-run system), because they are typically dually eligible for these systems4. State-run services differ state to state. Something that contributes to these differences is the Affordable Care Act, which was put into place in 2010. The Affordable Care Act increases Medicaid coverage to a larger group of people. However, it is up to states to determine if they want to “expand”, and cover this new group, which usually means an increase in services and supports as well, or remain un-expanded. About 40 states have chosen to expand. The other 10 have not5.

I was part of a research team led by Dr. Julie Armin, a professor at the department of Family and Community Medicine at the University of Arizona. Our team wanted to understand how state policies affect cancer experiences for those with IDD. Our team decided to conduct an in-depth policy review of state programs and Medicaid waivers. We chose to look at two states: Georgia and Kentucky. Georgia is a Medicaid-unexpanded state. Kentucky is a Medicaid-expanded state. By conducting a policy review on both states, we were able to get a better understanding of how programs and policies cover health care access for those with IDD in their states.

I specifically looked at how well the state legislature addressed social determinants of health (SDoHs), like education, food security, physical environment and living conditions, social context, economic stability, and health care system. Along with the policy review, my team and I held interviews with policy advocates in each state. These interviews were quite informative. The policy advocates were able to explain how effective programs and policies were when actually enacted. The policy advocates mentioned specific issues people faced, like unreliable transportation, and issues with health literacy and provider education. Our initial findings showed differences between policies in Georgia (un-expanded) and Kentucky (expanded).

While most Medicaid waivers address access to health care, there is a need for waivers to address the other SDoHs that may negatively affect cancer outcomes. I hope that through my research, I can spread awareness on the many barriers the IDD community faces to access their health care. I hope that state policy makers will pass more legislation that works to alleviate the stressors the IDD community deals with in health care.

Working on this research project was eye-opening. Before starting this research, I knew very little about the IDD community. However, after reading through the many policies, programs, and waivers each state had, as well as leading interviews with policy advocates, I learned a lot. I gained a much better understanding of the barriers they face when it comes to their healthcare. Thanks to my research, I am able to look at the six SDoHs through an IDD-adjusted lens. On top of that, I learned much about Medicare, Medicaid, and how funds are allocated to different organizations in each state. I was also able to understand barriers the IDD community faces to even get these services, like large waiting lists or provider shortages. My work on this project greatly built my knowledge on the Developmental Disabilities services system, health care, services, and supports.

Esha Mathur taking notes on a state health policy

References:

  1. Havercamp, S. M., & Scott, H. M. (2015). National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal, 8(2), 165–172. https://doi.org/10.1016/j.dhjo.2014.11.002
  2. Rimmer, J. H., Yamaki, K., Lowry, B. M. D., Wang, E., & Vogel, L. C. (2010). Obesity and obesity-related secondary conditions in adolescents with intellectual/developmental disabilities. Journal of Intellectual Disability Research, 54(9), 787–794. https://doi.org/10.1111/j.1365-2788.2010.01305.x
  3. Krahn, G. L., Hammond, L., & Turner, A. (2006). A cascade of disparities: Health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 12(1), 70–82. https://doi.org/10.1002/mrdd.20098
  4. Integrating care for dually eligible beneficiaries: Background and context. MACPAC. (2021, June 23). Retrieved September 16, 2022, from https:html
  5. Affordable Care Act, 111-148 (2010). https://www.congress.gov/111/plaws/publ148/PLAW-111publ148.pdf

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