Former U.S. Army soldier Shane Phillips and Emily Siddens were married in 2000. Tragically Emily sustained a catastrophic 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 for the past 22 years. He left the U.S. Army and lived off 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 disabled husbands or wives, through certain Medicaid waivers. This emergency provision meant people with severe disabilities could continue to receive care from family living in the same house instead of relying on outside caregivers who could potentially spread the virus.
However, a recent decision by the Department of Medical Assistance Services, which manages the state’s Medicaid program, means that this option will expire in November, despite state law permitting it to become permanent. However, due to a recent 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 will have to meet new requirements to provide that care, including employment and training by a home care service agency.
While Virginia officials say the change will provide the necessary oversight and help the state comply with federal rules in a post-COVID world, many parents and spouses who have benefited from the paid care approach say being forced to work through an agency doesn’t make sense.
Virginia’s move away from paid parental and spousal caregivers comes as the caregiving industry faces severe shortages across the country, which the pandemic has compounded.
States responded to the COVID-19 PHE using a variety of responsibilities, including disaster-relief state plan revisions, 1115 waivers, and Appendix K changes to 1915c waivers. When the Public Health Emergency (PHE) expires on Thursday, any changes made by a disaster-relief state plan amendment or 1115 waiver will likewise expire. Changes made under the Appendix K authorization will expire six months after the Public Health Emergency ends (December 11, 2023).
Appendix K was the most often used authority, with 437 changes to HCBS programs made under it. Changing processes for establishing eligibility, authorizing services, and paying providers; increasing provider qualifications or which providers are eligible to be paid; and expanding service delivery models are examples of Appendix K implementations.
Thirty-nine states reported reacting to labor difficulties by paying family caregivers during the public health emergency. But only 20 plan to continue this practice once the public health emergency expires on Thursday.
According to a March 2022 congressional report, the home care workforce has an annual turnover rate of 40% to 60%. The previous year, 84% of care agencies reported delaying programs because of staffing shortages. In comparison, 77% of agencies indicated they had turned down new referrals, stopped some services, or turned away new referrals.
There is a significant demand for disability waivers in Virginia: A recent state report indicated that around 16,500 Virginians had been given a disability waiver as of August 1, 2022. There are about 14,000 people on a waiting list for one.
Before the pandemic, 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.
That changed with COVID-19 when the federal government authorized a state plan providing payment for both parents and spouses. The plan allows parents and spouses to be paid for assisting their loved ones with activities of daily living such as bathing, toileting, and feeding.
The new opportunities proved popular. According to DMAS, during the first two months of 2023, about 1,900 parents and spouses of people with disability waivers provided personal care for their family members. In 2022, the General Assembly changed the state budget to make the new family caregiving choices permanent under state law — but only if approved by DMAS and the federal Centers for Medicare and Medicaid Services.
However, in early April, DMAS proposed plans to the federal government only to allow paid family caregivers under agency supervision. This effectively limits the ability of family members to both oversee and be paid directly for providing personal care services. The change might affect up to 4,500 Virginia residents who have what is known as Building Independence and Family, and Individual Supports waivers.
When asked if DMAS has encountered more cases of fraud that would show the need for more robust safeguards, Nichole Martin, director of DMAS’ Office of Community Living, responded that while there are active fraud investigations in both the consumer and agency routes, it isn’t prevalent.
Parents and disability advocacy groups say the push for agency oversight is demeaning and unnecessary, considering the documents they must produce to verify they are paid, caregivers. Some other states, they point out, are already directly compensating spouses of disabled individuals and parents of disabled children to function as caregivers.
Other waivers, such as Community Living and CCC Plus, have not yet been modified. Still, DMAS Communications Director Rebecca Dooley says the agency plans to adjust them to allow paid family caregivers. She did not say if parental and spousal caregivers for the almost 11,500 Virginians with these waivers would have to go through a third party.
According to the new plan, family caregivers would have to go through 40 hours of initial training plus 12 hours every year after that, document all of the services they offer every day, and be supervised by a trained nurse every 90 days. They would also be eligible for only 40 hours of care rather than more on a case-by-case basis.
According to Tammy Whitlock, a deputy director of DMAS, maintaining all of the pandemic-era measures could increase the likelihood that the federal government will reject the state’s program. Federal standards strongly recommend additional control of paid caregivers and compensation limits.
DMAS reimburses home care organizations that provide services to people with disability waivers at $21 per hour in Northern Virginia and $16.45 per hour in the rest of Virginia. After deducting their portion, agencies pay their carers at whatever rate they want, as long as it meets or surpasses the state minimum wage of $12 per hour. Caregivers hired through the consumer option are paid $16.45 per hour in Northern Virginia and $12.70 per hour in the rest of the state.
These statistics show that a consumer-directed caregiver working 40 hours per week in Northern Virginia would earn $34,216 annually. They would earn $26,416 per year in the rest of the state. Depending on their employer, agency caregivers may be paid more.
However, caregivers paid minimum wage would make less than $25,000 annually regardless of where they live. The yearly salary is approximately $100 more than the Federal Poverty Level for a family of two. Additionally, the average cost of living in the state, according to SoFi, is $48,249 per year.
Virginia is no stranger to controversies surrounding disability services. The United States Department of Justice determined in 2011 that the state had violated the federal Americans with Disabilities Act by segregating hundreds of people with disabilities in large, hospital-like state-run facilities known as training centers.
A 2012 settlement called on Virginia to transition from its then-segregated system to one focused on community-based services. A process that the state had already undertaken. One requirement required Virginia to add 4,170 more disability waiver slots.
Disability activists say Virginia has made significant progress in moving people out of long-term care facilities and into community settings. Some, however, worry DMAS’ recent decision is impeding this progress.
Millions of vulnerable Americans depend on Medicaid’s home and community-based services to survive. Without them, many people would be forced to enter an elderly care facility. Disabled humans, like non-disabled people, should be able to live in their communities with friends and family.
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/.
“Cost of Living in Virginia (2023).” SoFi, 1 Mar. 2023, http://www.sofi.com/cost-of-living-in-virginia/.
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/.
“Poverty Guidelines.” The Office of The Assistant Secretary for Planning and Evaluation, 19 Jan. 2023, aspe.hhs.gov/topics/poverty-economic-mobility/poverty-guidelines.