As cuts to the Affordable Care Act (ACA/Obamacare) and Medicaid loom, the disability community is at risk. The uncertainty around impending changes have many disabled and chronically ill people quite literally in fear for their lives. As a healthcare advocate with multiple disabilities, I have attempted to make sense of upcoming changes by reading proposals from President-elect Donald Trump, Speaker Paul Ryan, Health and Human Services Secretary nominee Rep. Tom Price, and Senate Finance Committee chair Sen. Orrin Hatch. I have also pored over analyses from non-partisan health policy organizations, and there are two changes to Medicaid we are likely to see happen quickly: altering Medicaid funding, and ending the Medicaid expansion.
Creating Block Grants or Per Capita Caps
The majority of Republican ACA replacements propose changing the funding of Medicaid from a match-rate system, where the federal government pays a percentage of all Medicaid costs, to either a block grant system, where the government would allocate a certain amount of annual funding to Medicaid to be spent by the state, or a per-capita cap where the federal government would only pay a “fixed amount per beneficiary” (regardless of actual healthcare costs).
These programs are typically proposed as a way to provide more flexibility to states. However, the proposals for these grants often dramatically slash the budget for Medicaid, and they are unable to keep up with rates of healthcare spending, therefore limiting access to healthcare, and diminishing the quality of services for disabled individuals.
Ending Medicaid Expansion
Another common theme in ACA repeal bills is an end to the Medicaid expansion. This Obamacare staple is a program that has been adopted by 32 states, and allows individuals living in poverty to enroll in Medicaid, regardless of documented disability status. Medicaid expansion has benefited the disabled community because it has mitigated the challenges faced by those who are under-diagnosed, undiagnosed, or otherwise chronically ill and disabled– but not technically “disabled enough” to qualify for benefits under traditional Medicaid.
Estimates show that eliminating the Medicaid expansion would leave more than 10 million of the poorest Americans uninsured and without access to care, leaving an unknown number of people struggling to manage serious illnesses on their own.
The Human Impact
Natasha, a 27-year-old multiply-disabled wheelchair user and Medicaid recipient in New York, is living in fear of this potential new reality. “Losing coverage would mean that I would have no chance of being able to work full time again, and much less part-time… Losing coverage would mean that any adaptive equipment I need would have to be funded through the kindness of others.” Yet, she knows that for others a loss of care could be even more dangerous: “My biggest fear for me personally losing the ACA will mean that I will always be struggling and won’t be able to do something with my life. My biggest fear for others losing the ACA is the possibility of death- a certainty in some cases.”
One patient facing such life-threatening consequences is Melanie, a 37-year-old woman from Illinois. She is on disability Medicaid for a multitude of serious illnesses, and her coverage is already inadequate, leaving her in “meager surroundings because all of [her] money goes to healthcare and medicine.”
As she explained matter-of-factly, any further cuts to her healthcare coverage “would be a death sentence.”
A 2012 Harvard University study estimated that there were already thousands of avoidable deaths per year in the states refusing to expand Medicaid. Ending the existing expansion and implementing cuts to Medicaid via caps or block grants will only increase the rate of preventable disease, debt, and death.
Athena, a 51-year-old woman with lupus, who is currently insured through Medicaid in New York, knows the stakes all too well. She fears that cuts to the program could mean losing access to care, including lifesaving chemotherapy drugs. She explained her current dilemma, “I can’t afford to be stressed, it makes the pain worse and makes my organs weaker, which means I get more flare ups. But how do you not stress knowing you may lose your healthcare?”
For too many sick and disabled Americans, this is the new reality: changes are coming to healthcare, and we have a lot to lose.
Stacy Stanford is a physically disabled, mentally ill, and autistic self-advocate and activist. She graduated from Westminster College in 2016 with a customized Bachelor’s degree in Disability Justice, and she is involved in Utah politics as a vocal advocate for expanded healthcare access. Stacy is happily married, and is a doting “mom” to a herd of dogs and cats. She and her husband own an Etsy shop, and she enjoys creating art and jewelry that is social justice-oriented, sassy, and uplifting. In her spare time she really enjoys doing the dishes.