The long waitlist
Tiffanie Rivers, 46, was running out of time. She is her mother, Gayle Love’s only daughter and caregiver.
Over the past year, as the coronavirus swept through nursing homes across the country and as dementia deepened its hold on her mother, she had promised herself that she would do everything possible to keep Gayle, 75, at home with her in Hyattsville, Md.
She had pestered state employees about her paperwork for a Medicaid waiver, filed two years ago, that would help her afford home-based care. She had hired a consultant, who told her that the waiver that she was applying for in Maryland has a waitlist of 21,000 names — one of the longest in the country.
In the caregiver Facebook groups that Rivers was in, people talked about a bill in Congress — recently absorbed into the $3.5 trillion spending plan mired in debate on Capitol Hill — that would permanently bump up the federal match for home-based care and designate $400 billion for states to expand access to such services.
Rivers stayed updated on these efforts. But now she couldn’t afford to wait.
After toggling between working from home and caregiving for 19 months, her return to in-person work as an accountant was looming closer. She was running out of family leave, out of money and out of bandwidth. And her mother’s needs were mounting.
Across the country, at least 820,000 people — primarily the disabled and the elderly — are on waitlists for waivers that could help them afford home care, according to the Kaiser Family Foundation. Maryland has permission from the federal government to grant 6,348 waivers for home and community-based services, but it only enrolls 4,286 residents, according to the state’s health department. More than 25,000 residents sit on waitlists to be approved.
“I don’t know what happens if [the waiver] doesn’t kick in,” Rivers said one recent afternoon, sitting outside her house. “I have to work. There’s no other choice. My mom’s care . . . it’ll literally suffer.”
Simon Hatcher is 15 years old, independent, curious, has a great sense of humor, loves to dance and create artwork. Simon also has complex medical needs, physical and cognitive disabilities.
His parents, Laura and Brian Hatcher, waited nine years to get a Medicaid waiver that allows them to pay for at-home help for their son, Simon, who has cerebral palsy, autism, epilepsy and several other medical conditions.
If and when families are able to procure the waiver, other challenges persist.
Home-care workers earn a median wage of $12 an hour, and about a fifth of them live in poverty, according to the Economic Policy Institute. The Medicaid rate for direct-support professionals (DSPs), who make up the bulk of home-care workers, can be half or a third of what private payers offer, so many staffing agencies don’t take Medicaid reimbursement.
The DSP they hired in 2019 provided much-needed respite. But at the start of the pandemic, like thousands of other home-care workers, she quit. Unable to find a replacement, Brian underwent training to become a DSP so that the family could still benefit from the Medicaid reimbursement.
The family now has two ticking clocks, Laura said. One counting down to January, when the state’s emergency measure allowing relatives to be reimbursed as caregivers expires. And the second counting down to 2027, when Simon turns 21 and loses eligibility for the waiver that lets him receive home-based care. He’s eligible for other waivers, but they all come with wait lists.
“There simply are not enough supports to go around for everyone who needs them,” Laura said at their home in Towson. “Every day, I hope against hope that before my husband and I become unsuitable to care for him, that he’ll get the appropriate support.”