Susie Angel and Sandy White were an energetic team in Austin, Texas. Angel was a successful disability advocate, editor, organizer, and dancer; White was her friend and personal care assistant who assisted Angel and her partner, Juan Munoz, both of whom were wheelchair users with cerebral palsy, in remaining in their own home. “We had an awesome relationship,” Munoz says.
One night in June last year, White had a heart attack and died. Munoz became Angel’s sole caregiver. He helped her with bathing, medications, transportation, and getting dressed.
Angel and Munoz immediately began trying to find a replacement for White. Angel had worked for years with The Coalition for Texans with Disabilities. Despite the resources available to the couple, they could not find a new PCA. The Coalition for Texans with Disabilities contacted over forty agencies to help Angel and Munoz.
Munoz found himself overwhelmed as Angel’s sole caregiver. He placed her in a nursing home for a short-term stay. Unfortunately, she would never come home.
Susie soon needed a feeding tube due to aspiration risks. She was hospitalized three times and developed pneumonia. Tragically, she passed away in August 2022, less than three months after Sandy White.
Dennis Borel, the executive director of The Coalition for Texans with Disabilities, recognizes that his long-time colleague had significant medical challenges, including a doctor’s May prediction that cancer would take Angel’s life in five years and a lung tumor proved impossible to biopsy. He is confident, however, that the absence of adequate in home-care contributed to her death.
Nationwide there is a shortage of home healthcare workers. Two of the main reasons for this are low wages and few, if any, benefits. Low wages are a nationwide problem.
In Texas, where Angel lived, home healthcare workers make $8.11 per hour. $8.11 is less than a dollar above the minimum wage in Texas. Texas’s minimum wage is $7.25 an hour, which has remained unchanged since 2009.
The average home healthcare worker in the U.S. made just $14.15 an hour as of May 2021, according to the Bureau of Labor Statistics. According to New Mobility Magazine, nearly 20% of PCAs live below the poverty line, and more than 50% receive government benefits such as Medicaid, SNAP, or WIC.
Ken, 62, and JoAnn, 64, live in rural northeast Pennsylvania, some 90 miles north of Philadelphia. JoAnn is a physical therapist with 40 years of experience, and Ken is a vivacious C5-6 incomplete quadriplegic who has worked and lived an active life since his injury in 1979. Ken’s life was turned upside down in 2019 when he experienced two heart attacks, numerous follow-up surgeries and procedures, and lengthy rehabilitation. He needed a variety of medical devices when he was released from the hospital after eight months. For the first time, he required home care.
Finding that care proved challenging. They called 16 agencies at one point and only found one nurse – who did not show up. The first nurse who arrived at their house worked until lunchtime and left. Ken considered himself “blessed” when they finally found a competent nurse. Then the pandemic struck and once more changed the atmosphere. With school-age children at home, the nurse was forced to resign. JoAnn was also laid off since she worked in home health care. She learned how to care for Ken and weaned him off the ventilator after three months.
JoAnn was able to get unemployment benefits for a brief time. When they couldn’t find the essential home care staff, she quit her job, foregoing her income and health care benefits to continue giving care. Ken also qualified for a few months of unemployment. JoAnn was authorized as his paid caregiver under a pandemic-era emergency Medicaid waiver just as his unemployment benefits were about to run out.
However, those benefits will end this month. JoAnn wonders if she should return to work. “It’s going to be very difficult to find the help he needs,” she says. They can’t afford private-duty nursing care, which costs $80 an hour.
Meanwhile, their mortgage has been in and out of forbearance. They’ve had varying degrees of success in obtaining financial assistance to cover their winter utilities. Ken has written to their legislators at all levels of government, departments, agencies, and caseworkers, attempting to get something done and ensuring that they know about the catastrophic situation in-home care.
Ericka Miller moved to Rochester, NY, seven years ago. Miller, who has spina bifida, says signing up for home and community-based services was life-changing. She has access to reliable transportation and helps with meal preparation and laundry.
However, the pandemic highlighted her precarious situation. She dropped from two PCAs to one, and finally, without saying anything, that one also stopped turning up. For approximately three months, she had no one. She became ill with what she assumed was undiagnosed COVID-19 and became dizzy and weak, unable to get out of bed to eat or use the restroom.
A friend came from Florida to help her. Wilfredo Rodriguez ended up becoming her live-in PCA.
Last year, Miller’s fiancé moved in. Parker Glick uses a wheelchair due to arthrogryposis. Arthrogryposis is a broad term for the development of nonprogressive contractures affecting one or more parts of the body before birth.
Rodriguez is now a PCA for both of them. He does the work of two or three different PCAs. He gets little time off.
The couple receives 77 PCA hours a week, more than Rodriguez is allowed to work. However, not using their allotted hours means that New York Medicaid could deem them unnecessary.
They’re looking for another PCA. Nine months have passed. They haven’t found anyone.
Home healthcare workers allow disabled and elderly Americans to live in the community rather than being institutionalized or placed in a group home. Many of us would be unable to get out of bed without their assistance.
Disabled have the right to enjoy their life, and home healthcare workers enable us to do so. Nobody should be required to live in a facility. We must address the shortage immediately since people’s lives are at stake.
Arthrogryposis Multiplex Congenita.” NORD (National Organization for Rare Disorders), National Institutes of Health, 19 July 2019, https://rarediseases.org/rare-diseases/arthrogryposis-multiplex-congenita/.
Beer, John. “For Wheelchair Users, Finding Attendants Has Gone from Crisis to Catastrophe.” New Mobility, United Spinal Association , 2 May 2023, https://newmobility.com/a-rolling-crisis/.
Garrett, Robert T. “Elderly, Disabled Texans Wanting to Stay in Their Homes Threatened by Low Home Care Pay.” The Dallas Morning News, DallasNews Corporation, 31 Mar. 2023, https://www.dallasnews.com/news/2023/03/30/elderly-disabled-texans-wanting-to-stay-in-their-homes-threatened-by-low-home-care-pay/.
“Home Health and Personal Care Aides : Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2022, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care-aides.htm.
“Texas Minimum Wage Law.” Texas Workforce Commission, The State of Texas, https://www.twc.texas.gov/jobseekers/texas-minimum-wage-law.