“I get the sense that my government would rather that I die.” That’s how Alana Theriault, a 50-year-old woman with spinal muscular atrophy, feels about proposed cuts of US$880 billion in Medicaid funding to US states.
If a version of the Trump administration’s proposed American Health Care Act (AHCA) bill eventually passes, it could mean that Theriault can no longer work, get dressed, or even breathe at night.
Sixty percent of Medicaid spending supports people with disabilities and older people. The proposed cuts would mean many could no longer hire people to help with essential daily activities, such as eating, bathing, and transportation. The cuts would eliminate federal Medicaid match funds that give states more freedom and incentive to move resources to home and community-based services – something people have a right to – instead of institutions. Over the next decade, the bill would cut 25 percent of Medicaid’s budget that serves over 10 million Americans with disabilities.
The current version of the bill, which may be brought before the House on Wednesday, includes a provision that would allow states to waive some of the benefits of the Affordable Care Act and permit insurers to charge higher premiums to people with pre-existing conditions. People like Theriault.
Without adequate support, people with disabilities in the United States may face the possibility of being placed in institutions, which flies in the face of the Supreme Court’s landmark decision in the 1999 Olmstead case. In Olmstead, the Supreme Court held that people with disabilities are entitled to receive “support and services in the most integrated setting appropriate to their needs.”
For Theriault and other Americans like her, having personal assistance means having a full life. With support from Medicaid and the state of California, she goes to work daily. She goes on dates with her partner of 16 years. She meets with friends. Her life as such will end if the Medicaid cuts go through, as she won’t be able to pay for people to assist her in performing daily tasks, such as bathing and feeding herself.
Theriault fears that if the AHCA is passed, she will have no other choice but to live in a hospital or institution, and will no longer be able live independently.
Voices like Theriault’s need to be heard in the current healthcare debate. As the AHCA currently stands, there are real consequences for millions of real people.