There was a gap in Joyce Thomas’s mornings.
After her husband, Benton, left for work, she’d sit in her motorized wheelchair by the window of their log cabin home in Hillsborough, sipping coffee and watching the birds flock to the feeders, waiting for her caregiver to arrive.
Over a dozen times, however, the scheduled caregiver for that given day did not show up, leaving Joyce alone and “stranded.” She has multiple sclerosis and osteoporosis, requiring assistance in many facets of her daily life.
“You can only hold your bladder for so long, and then there goes your self-dignity. And then you cry,” she said.
Upon receiving a frantic call from his wife, Benton would drop everything at his job as a timber harvester and drive home from Massachusetts or Vermont, depending on the job site, to take care of Joyce.
She receives care through the Choices for Independence Program, funded by Medicaid and administered by the state Department of Health and Human Services. The program, designed to provide an at-home means of care as a nursing home alternative for adults with disabilities, allows her to hire caregivers and slot them into her weekly schedule.
She requires help to get out of bed in the morning, get dressed, use the bathroom, prepare meals, do laundry, transfer into and out of her wheelchair, keep her house clean and get to medical appointments.
When she can’t find caregivers to hire or is left in the lurch by the ones she does have, Joyce has no alternatives.
In 2021, the Disability Rights Center, NH Legal Assistance, Nixon Peabody and AARP Foundation initiated a class action lawsuit against the Department of Health and Human Services for failing to provide program participants with the at-home services to which they’re entitled.
The suit, which will go to trial in November, argues that the program’s administration has imperiled the lives of those reliant upon home care to maintain their health and independence.
“NHDHHS’ failure places the Plaintiffs, and others similarly situated, at risk of going into an institutional setting to secure the services that they need and should be able to get in their homes,” the initial complaint, filed in 2021, reads.
Program recipients face “grave risk of suffering deteriorating health and related complications because of their unmet needs,” the complaint continues.
There are about 4,000 people in New Hampshire on CFI, according to AARP.
Kelly Bagby, a lead attorney on the case from AARP, said home- and community-based services are “critically important.”
“It’s really unsafe what New Hampshire has done to allow people to just hope that today is a lucky day and their service provider will show up,” she said. “That’s no way to live, and it creates so much anxiety and stress, and for not just the CFI participant, but all of their family.”
The state agency did not reply to a request for comment.
The realities
Three years ago, Benton Thomas made the difficult decision to leave his job so he could care for his wife, Joyce, full-time. He is paid for 40 hours of care through the CFI program — but none of that accounts for the off-the-clock assistance he provides simply because it’s needed and he loves his wife.
“Never figured I’d ever be doing this for a living, ever,” he said. “Luckily, we can do it, where I do get paid, because if I didn’t make that income, I wouldn’t be able to take care of her. I would have to go get a full-time job somewhere to pay for myself to live.”
If the couple had been able to find care elsewhere, Benton would still have his job. In fact, he now makes $22 per hour through CFI, whereas he was previously making $35.
But numerous job postings went unanswered, and Joyce said one caregiver stole her medication. Another, she said, stole her identity.
After years of uncertainty, Benton felt like the best option.
Still, 24 hours on her schedule remain unfilled. She has one person who fills four hours one day a week, in addition to her husband.
Joyce’s struggles to find and retain consistent care are not unique to her.
In 2022, there were 3,766 participants in the Choices for Independence program.
The lawsuit argues that DHHS has failed to provide and monitor the program. The state agency hasn’t collected information on unmet needs, and clients with gaps in their schedules have gone without “essential nutrition” or bathroom access for prolonged periods of time, the complaint reads.
‘At serious risk’
One of the named plaintiffs, Stephanie Price, has lain in bed in her urine, unable to rise on her own. She has developed dangerous infections without anyone to help her with hygiene, and lost further mobility in her body.
The lawsuit states that Price waited a year to receive any of the home care services she needed, and she never got notice from DHHS that her services weren’t being provided and so she had the right to a fair hearing “to seek redress.”
Another plaintiff, Kathleen Bates, has received only a few of the 35 service hours authorized to her through the program. She has both cerebral palsy and scoliosis and uses a wheelchair for mobility.
“When service workers are not available, Kathleen must choose between lying in
her bed and going without food or water or calling her friend who has a limited ability to assist,” per the complaint. “These circumstances jeopardize Kathleen’s health, putting her in jeopardy of developing infection, sores and/or falling and at serious risk of being institutionalized.”
For Concord resident Dan Hebert, the warning signs have been in place for a while.
“I used to be able to put up a job ad, and I could get 10 to 20 applicants, and I could fill out my schedule,” said the 44-year-old software engineer. He has been receiving home care services since 2000; he switched to Choices for Independence just under a decade ago.
He needs five caregivers to fill his 100 allocated hours and get all his needs covered. But he said he has been unable to hire enough people to cover those hours. Gaps in his schedule mean his parents have to step in and help. They are rising in age, which makes him “nervous,” he said.
“So, what’s the plan for me? Because they’re not the plan. They’re not always going to be able to do this or in or help out. They love me, and they’re good parents, so they would never let me fall, but that’s not a forever thing, and so I really need this program to come through,” he said.
The ever-looming threat of institutionalization is very real for Hebert. Still, it doesn’t feel like an option for him.
“No matter what happens, I’m not leaving this house,” he said. “And I’ve committed to that, whatever that means.”
A symbiotic relationship
Beyond providing people autonomy, the program also costs the state about three times less money than a nursing home.
Hebert experiences the caregiver shortage every time he posts a job and receives no inquiries. He also knows that the wages he can offer through the program aren’t enough for a lot of people.
“The rates are something I can’t control,” he said. “And a lot of my workers were on public assistance themselves, things like getting health insurance, being able to afford their heating bills, all this stuff.”
Bagby said the program, which has been around for several decades, is “chronically underfunded.”
“That’s part of the reason why the rates today are insufficient because they just never have caught up with inflation, and so that’s what makes it difficult to find people who are willing to work in the CFI program,” she said.
Hebert views it as a symbiotic relationship: “You have a group of individuals dependent on each other, trying to survive our own ways.”
No ‘silver bullet’
Joyce Thomas, for her part, feels frustrated with the lack of support she’s received from her caseworker about filling her hours.
While she did end up receiving a grant through Choices for Independence to add a track chair to her living room and renovate the bathroom to be more accessible, the process and time frame became long and drawn out, over two years, she said.
It all feels so discouraging sometimes, she said.
“Definitely hold your head up high,” said Joyce, who struggles with depression and anxiety. “I have to all the time, because you could sink back, can slide into this chair, and mope around, just be like, ‘Why me?’ No, don’t ever do that.”
She has a favorite phrase: “I have M.S. — it doesn’t have me.”
With the lawsuit heading to trial in November, Hebert hopes to see change.
“I mean the system as it is right now, at many levels, is broken,” Hebert said.
There’s no “silver bullet” or quick fix, Hebert said. “There’s no like, ‘If only we had this.’ It’s going to need a community to work together for a long time.”
