Alice Wong was born with a disease called SMA. SMA is an autosomal recessive neuromuscular disease that causes progressive proximal muscle weakness due to the loss of alpha motor neurons in the spinal cord. It is characterized by generalized muscle weakness and atrophy. The proximal limb muscles are predominantly affected. The phenotype is categorized into four degrees of severity based on the age of onset and motor function reached (SMA type I, SMA type II, SMA type III, and SMA type IV).
Wong spent four weeks in the intensive care unit in June due to various medical emergencies, including a collapsed lung and trouble swallowing. She now has a tracheostomy tube attached to a ventilator and a G-J tube that supplies liquid nutrition to her small intestine and stomach. She also lost her ability to speak and began communicating through a text-to-speech program.
Upon leaving the hospital, Wong wondered how she would receive care at home. The discharge planner suggested that because of her disability and Medicaid coverage, she should consider moving into a subacute nursing facility. The conversation brought her to tears.
Wong receives care through two programs. Finding caregivers is challenging for many disabled people due to low wages and staff turnover. Wong needed to hire reliable caregivers. She supplemented assistance from family members by hiring caregivers using private funding. In San Francisco, homecare workers paid by Medi-Cal make $18.75 an hour. However, San Francisco is one of the ten most expensive cities in the world, according to a report released by the Economist Intelligence Unit earlier this year.
A friend started a GoFundMe page to help pay for Wong’s care. Her care costs approximately $600 per day. No disabled person should rely on donations to live in their community. For many disabled people, including myself, being forced into a long-term care facility is a fear of ours.
Caregiving is an intimate job. My PCAs assist me with showering, toileting, and dressing, among other tasks. Needing assistance with such personal tasks has made my relationship with my body incredibly complicated. I am completely vulnerable when my PCAs are helping me with activities of daily living.
My body feels like it is on public display for therapists, doctors, and PCAs to do whatever they please as long as they deem it to be helpful by their standards. I don’t have a sense of autonomy when it comes to my body, which is frightening at times.
According to a UCLA examination of California survey data on older individuals and disabled people, 39.6% of those who reported needing personal care assistance either don’t receive it or could use more of it. Caregivers can be hard to find. Two of the main reasons for this are low wages and few if any, benefits. According to the Bureau of Labor Statistics, in 2021, PCAs and other home healthcare workers in the United States were paid an average of $13.02 per hour. The low wages mean a homecare worker in the U.S. typically makes less than $30,000 a year.
Americans have the power to create change in our country. The cost of caregiving is exceptionally high, both monetarily and otherwise. Most people will need care at some point in their lives. The system is in crisis and on the verge of collapse. The caregiver shortage must be addressed now because care can’t wait.
D’Amico, Adele et al. “Spinal muscular atrophy.” Orphanet journal of rare diseases vol. 6 71. 2 Nov. 2011, doi:10.1186/1750-1172-6-71
“Home Health and Personal Care Aides : Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2021, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care-aides.htm.
Shultz, Alex. “San Francisco Ranks among the World’s 10 Most Expensive Cities.” SFGATE, Hearst Newspapers, 2 Dec. 2022, https://www.sfgate.com/local/article/san-francisco-most-expensive-cities-17625251.php.
Wong, Alice. “’My Life Is in My Caregivers’ Hands’: Disability Advocate Alice Wong’s Vision for a New Approach to Health Care.” KQED, Northern California Public Media, 9 Dec. 2022, https://www.kqed.org/news/11934545/my-life-is-in-my-caregivers-hands-disability-advocate-alice-wongs-vision-for-a-new-approach-to-health-care.
Well said, Grace- this problem becomes more acute daily as aging baby boomers want to age in place and need support. Thanks for educating also about the issue of bodily autonomy.