RICHMOND — The Virginia Department of Medical Assistance Services recently released revised guidelines for state Medicaid disability waiver programs which would allow certain family members who provide caregiving services for their child or spouse with disabilities to be paid directly by the state.
The move comes after 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 start of the COVID-19 pandemic, but is set to end this fall because of DMAS’ concerns that it wouldn’t follow federal guidelines in a post-COVID world and fell short of oversight standards.
State officials told the Virginia Mercury later in May that the department planned to study whether a Maryland program allowing this option could be adopted in the commonwealth in response.
Rebecca Dooley, Senior Communications Officer with DMAS, said the new changes “address stakeholder concerns and are currently in a public comment period.”
Disability advocates and families say they agree with DMAS’ decision to allow family caregivers of minors and spouses the option to be paid directly by the state for their services – instead of exclusively through a private home care agency under the department’s current plan.
However, concerns still remain that the new guidelines continue to place “unreasonable” restrictions on these individuals – like a reduction in the hours they can be paid for and the mandated use of electronic visit verification, among others.
Almost all of the nearly 200 public comments submitted so far on the proposal echo similar concerns.
While Tonya Milling, executive director of disability advocacy group The Arc of Virginia, agreed these new guidelines don’t address all of the concerns raised by families, she said certain restrictions have to be put in place to follow federal standards set by the Centers for Medicare and Medicaid Services.
“We understand that because that’s required … as part of just fiduciary responsibility for public funds,” Milling said.
Not all flexibilities currently granted to family caregivers because of the COVID-19 pandemic will remain for those who opt for direct state pay – also known as the “consumer direct” option.
Family caregivers choosing to be directly paid by Virginia to care for their minor child or spouse with disabilities will have to comply with new restrictions starting Nov. 12 – such as their pay being capped at 40 hours a week, mandated use of electronic visit verification and limitations on who their employer of record can be.
Teri Morgan, executive director for the Virginia Board for People with Disabilities, said the restrictions stem from federal guidelines in place to cut down on fraud. This also includes establishing whether parents and spouses are providing “extraordinary care” for their minor children and spouses with disabilities that should be paid, rather than care that is legally mandated.
“Supports that are typical for [a]15-year-old like cooking and cleaning aren’t considered” extraordinary, Morgan said. “Those are considered natural supports that any parent would give any child. So how do you come up with the limitation? Our recommendation to DMAS was to go to 56 [hours] but they selected the 40 hours.”
Kelly Kiser, who identified herself as the paid caregiver for her daughter who has disabilities, expressed concerns on the proposal’s public comment forum about the limitation, as her daughter is currently approved for 50 hours of caregiver services a week.
“There is no one I can hire to meet her needs and no family members willing to care for her while I work because of these needs, Kiser said.
“By limiting the hours below what has been determined that she currently needs would place a hardship on us,” Kiser said. “Leaving my employment to care for her was an extreme hardship. I went through our entire savings, and was using credit to pay for day to day needs until we were approved for the waiver.”
Morgan believed this is also why the state is now mandating spouses and parents clock in and out through electronic visit verification systems usually done through an app. This is one of the Board’s biggest concerns, Morgan said, because it’s “unrealistic and not all states require it.”
“Cooking meals is natural support and not reimbursable but feeding is, so I have to log in for this half hour and then log back out and then log back in when I’m assisting you in your bath,” Morgan said.“You don’t need to have parents stopping and starting throughout the day to log in and log out when they’re caring for their child.”
Another concern Morgan raised is the limitations on who can be a family caregivers’ “employer of record” if they are being paid directly by the state. The state defines an employer of record as a person responsible for monitoring the caregivers’ work, verifying the hours worked and handling any disciplinary actions that need to be taken, among other duties.
Currently, a parent could be the paid caregiver for their child with disabilities and the other parent their employer of record. The new guidelines prohibit any family member that is legally responsible for the spouse or minor receiving disability caregiving services from being the employer of record, as well as anyone who lives more than 50 miles away.
Morgan said this can be especially troublesome for military families who move and may not know anyone in their area.
“The employer of record is a non-paid position,” Morgan said. “So it’s difficult to get somebody to do that and then they are concerned about releasing private information – health information, social security number, that kind of information – to somebody who may just be a neighbor or may just be another military family they don’t know that well.”
While the initial proposal submitted by DMAS earlier this year was a more robust update to the entire Family and Individual Supports (FIS) and Building Independence (BI) disability waivers, the new guidelines amend the section in the waivers specifically pertaining to certain family caregivers who opt for direct state pay and would also apply to Community Living (CL) and Commonwealth Coordinated Care Plus (CCC+) waivers.
Milling emphasized The Arc of Virginia is “very pleased with the change, but we will want to continue [to be] that watchful eye for parents to make sure that they’re still able to access services and have their needs taken care of for their family.”
DMAS declined to answer follow-up questions and multiple interview requests, but provided the Mercury with this statement:
“The original waiver amendments were submitted to address a General Assembly mandate to continue to allow legally responsible individuals to provide care to individuals under the waiver after the Appendix K expires. Those amendments only included an agency directed option which were approved by CMS. DMAS has since developed guidance that would allow for members to use the consumer directed option as well as the agency directed option. Subsequent waiver amendments that are consistent with this new guidance and address stakeholder concerns and are currently in a public comment period.”
The public comment period will remain open until 5:00 p.m. on July 27.
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