Catherine and Mike Rey with their two sons Louie and JP, for whom Catherine is the paid caregiver. (Catherine Rey)
Young, in love and ready to take on the world together, former U.S. Army sergeant Shane Phillips and Emily Siddens tied the knot in 2000 – unaware that a year later, a severe brain injury resulting from a car accident would leave Emily bedridden and completely dependent on others for day-to-day living.
For the past 22 years, Phillips has been struggling to care for his wife. He left the army and lived off savings while looking for a home care worker for Emily who wasn’t a “nightmare.” After years of searching, he found one and returned to full-time work, but still remains his wife’s primary caregiver due to the challenges of her condition. The overwhelming stress of it all finally caught up to him last year, landing him in the emergency room six times.
“I think I’ve been treading water while holding her head above water for 22 years, making no progress, with no hope or light at the end of the tunnel,” he said.
Ironically, the COVID-19 pandemic provided some relief: New rules linked to the federal public health emergency meant he could get paid by Virginia for being his wife’s caregiver — an arrangement Virginia approved this March.
“When I finally got the option to be her paid caregiver, it’s like I could breathe,” Phillips said. “Maybe things were gonna be okay, and maybe we could actually get back to some decent quality of life again, which we haven’t had since she was 19, since I was 21.”
However, a recent decision by the Department of Medical Assistance Services, which oversees the state’s Medicaid program, means this option is set to expire this November – despite state law allowing it to become permanent.
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 serious 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.
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.
That has left people like Kim Lieberman, a recently widowed mother and paid caregiver of a 12-year-old and 14-year-old with disability waivers, worried about how they will care for their families in the future.
While Virginia officials say the change will provide 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 simply doesn’t make sense.
“I don’t even know how agency [care] would address people like me who have multiple kids,” Lieberman said. “I’m already so stressed out about so many things with the kids.”
How Virginia’s system of disability waivers works
Disability waivers, formally known as Virginia Developmental Disabilities Home and Community-Based Services waivers, fund services for people with long-term care needs, such as those with developmental disabilities.
Those services can include home care attendants, group home support and workplace assistance services, all aimed at keeping individuals in a home or community setting rather than requiring them to be transferred to a facility. Funding for the waivers is split equally between the state and federal government, which must approve any changes states make to their programs.
In Virginia, demand for disability waivers is high: According to a recent state report, roughly 16,500 Virginians had been assigned a disability waiver as of Aug. 1, 2022. Nearly 14,000 individuals are on a waitlist for one.
Prior to 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 like aunts or grandparents could be reimbursed for personal care, the state has considered parents and spouses to be legally responsible for providing a certain 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 approved a state plan allowing both parents and spouses to be paid for personal caregiving services such as bathing, dressing and feeding.
Catherine Rey took advantage of these flexibilities to become the paid caregiver for her two sons, Louie, 8, and JP, 10, both of whom have genetic disorders and require constant care.
“For a lot of years I was essentially a coworker to the attendants that we hired, but unpaid,” Rey said. “This was sort of the missing link that was actually really beneficial to our family.”
Family members could step into the paid caregiver role either under the oversight of an agency or through what’s known as the consumer-directed route, where a family member decides what caregivers are needed and oversees their hiring. They also had to demonstrate they were providing “extraordinary care” beyond what they are legally obligated to provide as a parent or spouse and facing “extraordinary circumstances” that meant they had exhausted their options for getting care services elsewhere.
The new opportunities were popular. According to DMAS, almost 1,900 parents and spouses of people with disability waivers provided personal care for their family members during the first two months of 2023. And in 2022, the General Assembly amended the state budget to allow the new family caregiving options to become permanent under state law — but only if DMAS and the federal Centers for Medicare and Medicaid Services approved it.
In early April, however, DMAS submitted plans to the federal government that would only allow paid family caregivers under agency oversight, ending the ability of family members to both oversee the provision of personal care services and be paid directly for it. The change could impact up to 4,500 Virginians who hold what are known as Building Independence and Family and Individual Supports waivers.
No changes have been made to other waivers known as Community Living and CCC Plus yet, but DMAS Communications Director Rebecca Dooley said the agency plans to amend them to allow paid family caregivers. She did not specify if parental and spousal caregivers for the nearly 11,500 Virginians who hold these waivers would only be allowed through an agency.
Under the new plan, family carers would have to go through 40 hours of initial training plus 12 hours every year after, document all of the services they provide every day and be supervised by a registered nurse every 90 days. They would also only be eligible to get paid for 40 hours of care, instead of being eligible for more on a case-by-case basis.
The proposal sparked an immediate backlash, with hundreds of family caregivers and disability organizations submitting public comments opposing the change.
“This program has allowed us to have an almost normal life,” wrote Elizabeth Bagby, who identified herself as the paid caregiver for her paraplegic husband with disabilities. “My husband & I should not be forced to get a divorce in order to qualify under the same terms as any Tom, Dick or Harry from off the street.”
Being able to be paid by the state through the consumer-directed option rather than going through an agency “has been a godsend,” wrote Sandra Phillips, the paid caregiver for her son who has disabilities. “There are days when I am so stressed I feel like giving up. I am on high alert all the time. This has given me some peace of mind and security.”
Necessary or ‘insulting’ oversight
Tammy Whitlock, a deputy director with DMAS, said keeping all of the pandemic-era policies in place could run the risk of the federal government rejecting the state’s program because of federal guidelines strongly suggesting additional oversight of paid caregivers and compensation limits.
“We wanted to raise our odds of getting the waiver approved the first time around because CMS has a 90-day clock that they can stop any time during that review process, which can push out the approval, ” Whitlock said. “We didn’t want there to be a period where the parents who are providing [agency caregiving services] now would no longer be eligible to provide it.”
Furthermore, agency officials say the new requirements provide critical safety nets for families facing the “extraordinary circumstances” and providing the “extraordinary care” that justify family caregiving.
“It makes sense to us to have an agency oversee that situation with the nurse available to that family because if it’s an extraordinary situation, there are other things going on other than ‘Hey, I just can’t find a caregiver’ because the caregivers are out there now, they’re becoming more plentiful,” said Whitlock.
When asked if DMAS has seen more instances of fraud that would indicate the need for additional guardrails, Nichole Martin, director of DMAS’ Office of Community Living, said while there are active investigations of fraud within both the consumer and agency routes, it isn’t widespread.
Disability groups and many parents say the push for agency oversight is insulting and unnecessary, given the documentation they are already required to submit to prove they should be a paid caregiver. Some other states, they point out, are already directly paying spouses of disabled people and parents of disabled minors to act as caregivers.
We’re all for what people might call guardrails because you want things to be provided to families and individuals with disabilities in an appropriate way. But this change isn’t getting to that end, and instead we think it’s just going to make it more difficult for families to get the services they need.
– Tonya Milling, executive director of The Arc of Virginia
Taking care of a child with disabilities is already hard enough as a parent, said Deanna Plebuch, whose husband is the paid caregiver for her two children with disabilities.
“Then on top of that, to be questioned as if we’re criminals trying to steal money from other people when that’s just simply not the case —we’re just trying to get the bare minimum of equity,” said Plebuch.
Other parents and spouses of disabled people say there’s no need for the state to mandate training for services they’ve been providing their family members for years.
“It feels insulting that instead they would have to go through all these hours of training on how to care for someone with a disability when it’s their own child,” said Milling. “They really are the expert on how to care for that child.”
Virginia’s shift away from paid parental and spousal caregivers comes as the caregiving industry faces dire shortages nationwide that were exacerbated by the pandemic.
A March 2022 congressional report found a turnover rate in the home care workforce of 40% to 60% annually. The prior year, 77% of care agencies reported turning away new referrals, while 58% said they had discontinued certain programs or services and 84% said they had delayed programs due to staffing shortages.
The problem is also evident in Virginia. Teri Morgan, executive director for the Virginia Board for People with Disabilities, said there is “absolutely a direct care workforce crisis” in the commonwealth.
Margie Crotts, a paid caregiver for her adult daughter Sarah, who holds a different type of disability waiver than the ones affected by the new policy, said she waited more than a year to get a caregiver from an agency after Sarah was awarded her waiver but never received a call back.
Even families who have found caregivers can face difficulties if the caregiver becomes sick, quits or otherwise can’t come to work. Rena Bumbray-Graves, who has helped care for two sisters with disabilities both as a paid caregiver and in concert with an agency, said “the agency never has a backup.” That means when a carer is absent, Bumbray-Graves often has to step in to fill the gap.
“Of course I don’t get paid for that. But because she’s in my home and she’s family, I’m going to take care of her whether anybody shows up or not,” she said.
Part of the problem, say people working in the care industry, is that many caregiving jobs have low wages and lack health insurance, paid family and medical leave and retirement plans.
“So many of our care workers are forced to live in poverty because of the low wages we pay, and so it hurts the care workers and it hurts the people who rely on them,” said David Broder, president of SEIU Virginia 512, a union representing home care and government workers in the commonwealth.
Currently, DMAS reimburses agencies providing home care services for people with disability waivers at a rate of $21 per hour in Northern Virginia and $16.45 per hour in the rest of Virginia. After taking a cut of the pay, agencies then pay their caregivers at whatever rate they choose as long as it meets or exceeds the state minimum wage of $12 per hour. Caregivers retained under the consumer route are reimbursed $16.45 per hour in Northern Virginia and $12.70 per hour in the rest of Virginia.
Those rates mean a consumer-directed caregiver working 40 hours a week would make $34,216 a year in Northern Virginia and $26,416 a year in the rest of the state. Agency caregivers may receive more depending on their employer, but those paid minimum wage would make $24,960 a year regardless of where they live.
What fiscal impact the shift toward agency oversight will have remains unclear.
According to the hourly rates listed by DMAS, one hour of personal care provided through an agency would cost $5.34 more in Northern Virginia and $5.81 more in the rest of Virginia than one hour paid directly to a family member through the consumer route.
“If we extrapolate that out over 40 hours per week, 52 weeks per year, it means that agency-directed care would cost the state $12,085 more in [the rest of Virginia], and $11,107 more in [Northern Virginia], per year,” Broder said.
However, DMAS has said requiring family caregivers to go through agencies shouldn’t raise any financial concerns because other expenses linked to the direct provision of care by family members — such as the use of service facilitators and other liaisons — mean consumer-directed and agency services end up costing the state roughly the same amount.
DMAS did not respond to a follow-up question asking for a full list of expenses associated with consumer-directed services. The department also did not answer if there are any indirect costs associated with agency-directed services.
Sen. George Barker, D-Alexandria, who co-chairs the Senate Finance Committee, said he couldn’t say for certain whether one route costs Virginia more than the other but said he thought continuing to allow parents and spouses to be paid directly wouldn’t likely cost as much as people might expect.
“It’s really targeted at the parents, the family members, who are being paid, and I think that’s the biggest issue here,” he said.
Some family carers also said paying parents or spouses to provide care comes with greater benefits because their loved ones are more comfortable with them and agencies can set limitations on what services their workers can provide, like transportation or administering medication.
Before James Shea’s daughter Lydia died in 2022 due to complications stemming from a rare genetic disorder, either he or his wife had to be at home with registered nurses in case she needed medication or transportation.
“It ruined my working life,” Shea said. “Running around to appointments, taking care of her scheduled things like it was a full-time job, and we needed that income to survive as a family.”
Shea eventually left his job as a freelance writer at the start of the pandemic to become a full-time paid caregiver for Lydia.
Ongoing disability service shortfalls
Virginia isn’t a stranger to controversy over services for people with disabilities. In 2011, the U.S. Department of Justice found the state had violated the federal Americans with Disabilities Act by segregating hundreds of individuals with disabilities in large, hospital-like state-run facilities called training centers.
A settlement reached in 2012 called for Virginia to transition its then-segregated system into one involving community-based services, a process the state had already begun. Among the requirements was one ordering Virginia to add an additional 4,170 disability waiver slots.
While disability advocates say Virginia has made large strides in transitioning people out of facilities into community settings, some argue DMAS’ recent decision hinders this progress.
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Joy Spencer, CEO of service facilitator organization Moms in Motion, said part of the 2012 settlement “is that individuals receiving services are supposed to have provider choice.”
“How is the parent of a minor child going to continue to be allowed to make a choice about when and how their services are provided if they’re being forced to use agency-directed [care]?” Spencer said.
The settlement agreement is anticipated to expire Dec. 31 after two extensions due to federal courts finding Virginia had not achieved full compliance with all DOJ requirements.
In the meantime, waitlists remain long.
Brigid Klein said while her daughter Elizabeth, who has an intellectual disability, qualified for a waiver when she was 8, she has been on a waitlist to receive services for 20 years.
“My husband and I, her parents and also now her legal guardians, are aging, and we get a little more anxious about are we ever going to get waiver services?” Klein said. “How can they close [the settlement] when we have this situation? It’s not been resolved.”
However, Martin, the director of DMAS’ Office of Community Services, said the agency has no control over adding slots, which the General Assembly must decide to fund in the state budget.
Furthermore, she said, “You can’t just throw slots at the equation. You have to have providers to fill and meet the needs of members.”
In 2022, for example, lawmakers sought to add funding for an extra 600 waiver slots into the budget before delaying the money because a shortage of care providers meant the state couldn’t guarantee that hundreds more people could actually receive services. As a result, no additional slots were added in 2023, according to a February report.
Both the General Assembly and Gov. Glenn Youngkin have taken some steps to address the situation. The legislature in 2022 raised DMAS reimbursement rates for personal care worker rates by 7.5%, bringing them to the current level. And while Virginia is set to finally add the 600 additional slots this July, Youngkin has proposed raising the total to 1,100 as part of his “Right Help, Right Now” plan to improve the state’s behavioral health system. Under that plan, the slots would be intended for those on the “priority 1” waitlist, meaning they need services in a year or less.
The proposed Senate budget also includes an additional 500 waiver slots to be added this July.
While Crotts said she recognizes Virginia is taking steps to provide more services for its residents with disabilities, she said she and other parents and spouses shouldn’t be overlooked in the state’s efforts.
“I’d love for someone from DMAS to come to my house and stay with Sarah for when you want me to hire somebody,” she said. “How about you come for eight hours? You try it, you take a shift and I’ll go get my nails done, go to the movies and go out. I don’t think they’ll come back.”
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