Family Caregivers Need Support

The Virginia Department of Medical Assistance Services has issued amended guidelines for state Medicaid disability waiver programs, which would allow certain family members to be compensated directly by the state for providing caregiving services to their disabled child or spouse.

The change follows an outcry from hundreds of families and letters from state Democrats critical of the initial guidelines prohibiting this option that DMAS – which oversees the state’s Developmental Disabilities Home and Community-Based Services waiver programs – submitted to the federal government in May.

This option has been available in Virginia since the beginning of the COVID-19 pandemic. It will be phased out this fall. This is due to DMAS’ fears that it would not adhere to federal criteria in and would fall short of supervisory standards.

In response, state officials told the Virginia Mercury later in May that the agency planned to investigate a program available in other states such as Maryland. They wanted to see if a similar program could be implemented in Virginia.

Family caregivers who choose to be directly paid by Virginia to care for their minor child or spouse with disabilities must comply with new restrictions beginning Nov. 12. They include a weekly cap of 40 hours, the use of electronic visit verification, and restrictions on who their employer of record can be.

Disability groups and families say they support DMAS’ decision to allow family caregivers of kids and spouses to be paid directly by the state for their services, rather than just through a private home care provider, as the department’s current plan requires.

However, there are also worries that the new criteria continue to impose “unreasonable” restrictions on these individuals, such as limiting the number of hours they can be compensated for and mandating the use of electronic visit verification, among other things.

If you’re unfamiliar with EVV, it entails using an electronic system to track the hours worked by personal care attendants and other home service providers for the elderly and disabled. This might be a custom device, a smartphone app, or a web-based input form that can be accessed from a computer. When employees log hours, their employers must verify them using EVV.

Kelly Kiser, who explained that she is a paid caregiver for her disabled daughter, voiced concern about the limits on the proposal’s public comment forum, noting that her daughter is now approved for 50 hours of caregiver services per week.

Kiser said there is nobody who can care for her daughter for 50 hours a week. She left her job and spent her savings while caring for her daughter.

Teri Morgan, executive director for the Virginia Board for People with Disabilities called EVV “unrealistic” for family caregivers.

People like Shane Phillips who has been married to his wife Emily Sidders since 2000 will benefit from being able to continue receiving pay. 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.

In other states, family members have found great relief in getting paid. Laura Gjacs who lives in Arizona cares for her daughter Tori who has an autoimmune disorder. Laura gets paid to be her daughter’s LHA (licensed health aide.) She helps her daughter take medications, administers G-tube feedings, and does breathing treatments throughout the day.

Until Laura became an LHA, her husband was the sole income earner. Laura’s income has helped the family financially. It is easier able to pay foe gas and other expenses now.

In Colorado Springs, CO Shelia Williams has six children, four of whom are disabled. She is a CNA for her son Jordan. Jordan lives with a condition called lissencephaly. He also has numerous other diagnoses.

Lissencephaly is a medical term that means “smooth brain.” Normal brain surfaces have many folds and grooves (gyri and sulci), whereas lissencephaly brains do not. The folds may be partial or wholly absent.

Microcephaly (reduced head size) and symptoms such as spasticity, seizures, unusual facial expressions, failure to thrive, and deformities of the hands, fingers, or toes characterize lissencephaly. Lissencephaly is caused by anomalies in the migration of neurons during embryonic development. These can be caused by genetic mutations, viral infection of the fetus or uterus, or insufficient blood delivery to the embryonic brain.

Every day, millions of vulnerable Americans depend on family members for care. Family caregivers need help in order to continue caring for their loved ones. If caregivers needs are not met, they will not be able to continue to care for their loved ones.


Gomez, Gloria Rebecca. “New Program Hires Parents to Care for Their Medically Fragile Children.” Arizona Mirror, 3 May 2022,

Eubanks, Virginia, and Alexandra Mateescu. “’We Don’t Deserve This’: New App Places U.S Caregivers under Digital Surveillance.” The Guardian, 28 July 2021,

McIntyre, Meghan. “‘Godsend’” Caregiver Program for Virginians with Disabilities Set to End This Fall.” Virginia Mercury, 8 May 2023,

McIntyre, Meghan. “New Proposal Aims to Permanently Allow Caregiver Option for Va. Disability Program.” Virginia Mercury, 19 July 2023,

Than, Khoi D.. “Cephalic Disorder”. Encyclopedia Britannica, 27 Nov. 2017,

Zimmerman, Alasyn. “Parent Caregivers, How Organizations Are Helping Children with Special Needs.” KOAA News 5, 18 Apr. 2022,

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