During the beginning of the COVID-19 pandemic, Nathan Hill began receiving $12.75 an hour from an Idaho Medicaid program to help care for his disabled son Brady. Hill earns more than the minimum wage, which in Idaho is $7.25. The money allowed his family to buy groceries without SNAP benefits for the first time.
Brady had brain cancer when he was an infant. He now requires 24-hour care. He has a tracheostomy and a feeding tube. Each day, Brady’s parents spend about three hours getting him ready in the morning.
States responded to the COVID-19 PHE (public health emergency) using a variety of strategies, including disaster-relief state plan revisions, 1115 waivers, and Appendix K changes to 1915c waivers.
Thirty-nine states reported reacting to labor difficulties by paying family caregivers during the public health emergency. But only 20 planned to continue this practice once the public health emergency ended in May.
Depending on the state, family caregivers were compensated for assisting people with intellectual or physical disabilities, medically fragile children, or loved ones with catastrophic injuries. Pay rates and who could be paid vary.
Before the pandemic, in many states neither parents of minors with disability waivers nor spouses of waiver holders could be paid for personal caregiving. While other extended family members, such as aunts or grandparents, may be reimbursed for personal care, the law considers parents and spouses to be legally accountable for providing a specific level of services to minor children or partners, preventing them from being paid for that care.
Shane Phillips of Virginia has been married to his wife Emily Sidders since 2000. Tragically, Emily sustained a traumatic brain injury in a car accident the following year. The accident left her bedridden and in need of 24-hour care.
Phillips has struggled to care for his wife since. After the accident he left the U.S. Army and lived off of his savings while looking for a home care worker. He found one after years of looking and returned to full-time work, but he is still his wife’s primary caregiver due to her health challenges. Last year, the strain of it all finally caught up with him. He went to the emergency room six times.
The COVID-19 pandemic, ironically, offered some relief: Since the start of the COVID-19 pandemic, Virginia has directly paid parents and spouses to provide personal care services for disabled children under 18, as well as spouses through certain Medicaid waivers.
However, due to a decision by the Department of Medical Assistance Services, which manages the state’s Medicaid program, this option will expire in November, despite state law permitting it to become permanent.
Starting Nov. 12, spouses and parents of people whose disabilities require long-term care in Virgina will have to meet new requirements to provide that care, including employment and training by a home care agency.
In Oregon, Callie Ross’s son Tensy was born with primordial dwarfism. At birth he weighed 3 pounds. He also has end-stage heart and lung problems. He lost his ability to walk after experiencing cardiac arrest, which left him deprived of oxygen for more than a half hour.
Senators unanimously passed Senate Bill 91, according to Callie Ross, allowing her son to spend more time with both parents. This is because the measure would compensate parents for caring for their children who have severe intellectual and developmental disabilities.
The bill extends a pandemic-era program that concluded in May. Oregon Medicaid reimbursed parents to care for their children with developmental and intellectual disabilities during the pandemic, but that benefit expired on May 11. The program was open to about 700 children who were categorized as having the highest needs.
The bill would allocate around $3 million to the program, and the state would require approval from the federal Centers for Medicare and Medicaid Services. An estimated $7 million in federal matching funds would be added.
Caring for a loved one is not uncommon. In 2020, AARP found that more than one-fifth of Americans (21.3 percent) now provide care. having cared for an adult or child with disabilities in the previous 12 months. Caregiving can also impact finances. A report from AARP titled Caregiving Can Be Costly — Even Financially shows that family caregivers spend an average of more than $7,000 a year on expenses related to caregiving.
I grew up in Massachusetts. When I turned 18, my mother became my PCA which helped supplement her income. Massachusetts does not allow parents of minor children to be paid for the care they provide.
Millions of vulnerable Americans depend on family members to provide care every day. Family caregivers need support in order to continue providing vital care to their loved ones.
AARP and National Alliance for Caregiving. Caregiving in the United States 2020. Washington, DC: AARP. May 2020. https://doi.org/10.26419/ppi.00103.001
Avery, Dan. “Minimum Wage by State: Base Pay Rising in over Half of US States in 2023.” CNET, 6 Jan. 2023, http://www.cnet.com/personal-finance/minimum-wage-by-state-2023/.
Burns, Alice, et al. “Ending the Public Health Emergency for Medicaid Home- and Community-Based Services.” Kaiser Family Foundation, Kaiser Family Foundation, 19 Apr. 2023, https://www.kff.org/policy-watch/ending-the-public-health-emergency-for-medicaid-home-and-community-based-services/.
Botkin, Ben. “Oregon Senate Passes Bill to Help Parents Who Are Caregivers of Disabled Children.” Oregon Capital Chronicle, 24 June 2023, oregoncapitalchronicle.com/2023/06/23/oregon-senate-passes-bill-to-help-parents-who-are-caregivers-of-disabled-children/.
“Become a PCA Today.” Personal Care Attendant Workforce Council, The Commonwealth of Massachusetts, https://www.mass.gov/service-details/become-a-pca-today.
Goldstein, Avram. “The Work of Family Caregiving: Invisible, Costly, and Taxing.” California Health Care Foundation, 8 Jan. 2022, https://www.chcf.org/blog/work-family-caregiving-invisible-costly-taxing/.
Lannan, Katie. “Unpaid Caregivers Urge Healey to Get More Support to Families.” WGBH, 7 Apr. 2023, https://www.wgbh.org/news/politics/2023/04/07/unpaid-caregivers-urge-healey-to-get-more-support-to-families.
McIntyre, Meghan. “‘Godsend’” Caregiver Program for Virginians with Disabilities Set to End This Fall.” Virginia Mercury, 8 May 2023, http://www.virginiamercury.com/2023/05/08/godsend-caregiver-program-for-virginians-with-disabilities-set-to-end-this-fall/.
Murphy, Tom, and Amanda Seitz. “Families Worry over the Future of Medicaid Caregiver Payments That Were Expanded during the Pandemic.” AP News, 28 June 2023, apnews.com/article/covid-medicaid-family-caregiver-5da26199416ad957c136d19c47741d93?fbclid=IwAR1qNSIFMT1z-4dg9YqqVMBSo3mUvLP0Uu_vHVja-nSnApMax9n7lhzUNyk_aem_AfGdojHOhyRDvF1ZK3Y_GPtjfYEZcozu_AhAuFUe0ASKGUtW4rUvhUHsZ7Zy90HOBuY.
Ritter-Saunders, Emilie. “The Minimum Wage in Idaho, 75 Years Later.” States Impact, 25 June 2013, stateimpact.npr.org/idaho/2013/06/25/the-minimum-wage-in-idaho-75-years-later/.