The Cortez Family of Albuquerque, NM, is facing a crisis that millions of people with disabilities and their families are experiencing across the country. They can’t find in-home support for their daughter Amariz. She has slowly lost her independence over the last few years because Rett Syndrome is impacting her brain development and causing a loss of muscle tone. She is also living with multiple sclerosis and epilepsy.
Amariz is one of about 250 children considered medically fragile. She was approved for a waiver through New Mexico’s Medicaid program, which should be providing an in-home nurse. At most, Amariz’s family said she received 20 hours for about a month or two in 2020. She requires 40 hours, according to an assessment conducted through the University of New Mexico’s Center for Development and Disability. So, the Cortezes submitted written requests. Her mother, Alicia, said she was told to go through the appeals process.
Ultimately, the Cortez Family sued, and they are not the only ones. Three other New Mexico families are suing the Department of Human Services in federal court. The state agency pays for nursing care by distributing Medicaid funds to three insurance companies: Blue Cross and Blue Shield of New Mexico, Western Sky Community Care, Inc., and Presbyterian Health Plan, Inc. The families argue that those three insurance companies pocket taxpayer money rather than providing nurses.
Aside from the money, Amariz’s family has been told no nurses are available. Danielle Comeaux is the director of the Department of Human Services. Comeaux emphasized that it is the responsibility of insurance companies to locate nurses. And, she explained, this has been difficult because the COVID-19 pandemic has resulted in burnout, a national nursing shortage, increased pay for traveling nurses, and nurses choosing to serve in hospitals rather than homes.
The Cortez family is far from the only family dealing with the nursing shortage. In Queens, NY, Chole Mead cares for her son Henry, who has SMA, a muscle-wasting disease. Henry has received 24-hour nursing at home since birth, with Ms. Mead and her husband acting as backups when a nurse unexpectedly cancels a shift. However, a recent lack of home-care nurses has pushed the couple to handle longer periods on their own – up to 36 hours at a time.
In the early months of the pandemic, two of Henry’s nurses were ill and were required to quarantine, so his parents reduced their hours at work to cover the gap. After a while, they put their nursing coverage back together, but by spring 2021, gaps had returned. When Henry’s mother called the home care agency, she was told, “We have nobody.”
Ms. Mead tried other agencies, contacted nurses who had previously cared for Henry and made a Facebook plea. In addition to having a son with SMA, the couple now had to care for two kids with life-threatening conditions after their daughter Madeleine’s Type 1 diabetes diagnosis. For single parents, it is even more difficult. Sam, a 4-year-old boy with a rare neurological disease who is ventilator dependant and has epilepsy, is cared for by his mother, Sarin Morris, in Clifton, New Jersey. He is supposed to receive 20 hours of nursing care daily, but he has never had enough nurses.
I have Cerebral Palsy and have experienced this shortage firsthand as well. Massachusetts Medicaid provides me with over fifty hours of care per week. Unfortunately, Medicaid doesn’t help you find home care workers. Finding PCAs to assist me while I was in college was challenging. There were numerous ways I tried to hire staff. I put an advertisement on Craigslist. My mom posted on social media and contacted the local community college’s nursing program. Ultimately, I went through three different PCAs in three semesters. If I could not find PCAs, I might be forced to live in a nursing home.
This crisis is affecting elderly people as well as those with disabilities. In Minnesota, an elderly couple is unable to find home healthcare workers forcing them to rely on one another. Acey, 85, is the fit one, the organized, upbeat caregiver to her 88-year-old husband, Tom. Acey was so tired after a long day spent caring for Tom in July that she had to go to the emergency room. Acey’s health crisis, according to the Hofflanders, is primarily due to a lack of adequate in-home care.
They spent most of this year waiting to be assigned a suitable home-care worker due to a nationwide labor shortage exacerbated by the COVID-19 outbreak. Acey was forced to bear the burden alone for four months. She had no support from April to August because no home healthcare workers were available.
In the United States, the shortage is having an impact on millions of individuals. People are struggling from Massachusetts to Minnesota. This situation impacts people ranging in age from 5 to 85. A lack of care puts people’s lives in danger. We must address this problem immediately because care cannot wait.
Alcorn, Ted. “To Keep Their Son Alive, They Sleep in Shifts. and Hope a Nurse Shows up.” The New York Times, The New York Times Company, 4 June 2021, https://www.nytimes.com/2021/06/04/health/nursing-shortage-disabled-children.html.
Pierret, Ann. “Parents of Kids with Disabilities Say New Mexico Is Failing Them.” KRQE NEWS 13 , Nexstar Media Group, 19 Oct. 2022, https://www.krqe.com/news/investigations/parents-of-kids-with-disabilities-say-new-mexico-is-failing-them/amp/.
Rowland, Christopher. “Seniors Are Stuck Home Alone as Health Aides Flee for Higher-Paying Jobs.” The Washington Post, WP Company, 25 Sept. 2022, https://www.washingtonpost.com/business/2022/09/25/seniors-home-health-care/.