For some disabled Idahoans, ‘my entire independence relies’ on direct care workers

POCATELLO (Idaho Reports) — Shiloh Blackburn knows she can’t live without community support workers.

She knows she needs them to live independently in her small Pocatello apartment, along with her two cats, Saga and Excalibur.

What she doesn’t know is whether the state and the Legislature understand the magnitude of that problem.

Blackburn agreed to spend an afternoon with Idaho Reports this summer to demonstrate why she needs the direct care workers and her concerns about the shortage.

Blackburn, who serves as the chair of the Idaho State Independent Living Council, has cerebral palsy, a disease causing some physical limitations that requires her to use a wheelchair. She also has seizures and a developmental disability. She doesn’t want to live in a group home, and she doesn’t want to be reliant on her parents. At 48, Blackburn knows her parents are aging and won’t be able to care for her the way they did when she was a child.

“They help me get up out of bed and into my chair,” Blackburn said about support workers. “And let me clarify that one part — once I’m in bed, I cannot get out of bed on my own. Once I’m in my chair, I cannot get out of my chair on my own. I have to have help. So if somebody does not come in for a shift, I’m stuck.”

Two care workers come to her apartment each day, working in shifts, one at a time. They help her get to her wheelchair, help her with hygiene, cooking, getting her medication, running errands, and companionship.

“Basically, my entire independence relies on them,” Blackburn said.

These problems are not just hypothetical. Recently, a new care worker failed to show up for a shift, leaving Blackburn in the bathroom for six hours, unable to move herself.

Blackburn is on Medicaid and Medicare and uses that funding to pay the care workers. She uses the self-directed service model, so she can hire her own care workers through the budget she is allocated through the government.

The Idaho Office of Performance Evaluation published a report this year on the sustainability of the direct care workforce, which estimated 33,000 elderly people and people with disabilities in Idaho use direct care workers. The report estimated the state needs at least 3,000 more direct care workers than are currently employed, a problem that will only get worse.

In September, the Joint Legislative Oversight Committee heard from members of the disability advocacy community, who shared some of their stories of being unable to find consistent care. Some of those experiences prompted tears from committee members.

IDHW Medicaid Division Administrator Juliet Charron knows the issue around the shortage of direct care workers is a problem, and the Medicaid pay rate is a central cause.

“Many factors go into their rate review process and home and community-based services we know, I think, have been long overdue for some rate increases,” Charron said. “The Legislature has appropriated a number of rate increases over the past two sessions, which has been great, but I think it has scratched the surface of probably what needs to happen.”

Charron said the COVID-19 pandemic exacerbated the problem, as jobs at places like Amazon or fast-food restaurant chains started paying higher wages.

“One of the things that concerns me the most is that caregivers are not paid as much as other fields of work,” Blackburn said. “Right now, my caregivers, they don’t have benefits, they don’t get paid time off, they don’t get holiday pay, because that’s not in my budget. … They really are hardworking and they really care about me and want to make sure I get the care I need. But at the same time, they have their own lives to live and they have their own needs.”

THE LARSENS

For Rochelle Larsen of Rigby, direct care workers help her take better care of her family. She has five children, two of whom have a disability. Her 14-year-old son, Abraham, is diagnosed with oppositional defiant disorder, attention-deficit hyperactivity disorder, a mental disability, and an intellectual disability. Her 10-year-year daughter, BrynnLe, has Down syndrome.

Her family uses Medicaid’s family directed support services for the two children. Abraham gets 10 hours a week with a habilitation interventionalist through an agency. Abraham and BrynnLe also have some hours during the week with a support services worker, who helps the family care for them.

“During the last couple years, we’ve seen an increase in turnover, for sure,” Larsen said. “Like, being on a waitlist to even get services. In the past year he’s had four different people work with him and he’s had about four months without anybody being able to work.”

The lack of routine is hard for children with special needs, Larsen said. When Abraham is without a worker, he struggles with behavioral issues.

“It feels like we make a little bit of progress and then the worker changes or leaves and it feels like we’re starting all over again,” Larsen said. “It gets frustrating as a parent to see your child make some progress and then regress.”

Her daughter has support workers who work on goals with BrynnLe while her parents take care of other family needs.

“We can’t pay what other businesses are paying, so it’s really difficult to keep workers at a steady rate,” Larsen said. “Most of ours have another job and so their hours are very limited to be able to work with our children.”

The Larsens try to make the workers feel like they are a part of the family, and they try to supplement the budget when they can, sometimes bringing a care worker on vacation with the family.

Larsen said workers also help give parents of disabled children a brief break.

“We’re with our children all of the time,” said Larsen, who stays home with the children. “So when you’re always doing something for someone else, it’s nice to have somebody else come and you’re able to get a break and be able to rejuvenate yourself and you’re able to come back and be a really good parent for your child.”

Larsen stressed that paying direct care workers more is vital to addressing the shortage.

“It is an exhausting job. It’s hard to work with individuals with disabilities,” Larsen said. “It’s either physically hard, (or) with our son Abraham, it’s mentally and physically draining. So to be compensated for that work would be amazing.”

Larsen also argued that care workers should be treated with more respect, rather than “glorified babysitters.”

“They are doing a lot more,” Larsen said. “They are working on goals and outcomes and trying to help our children be able to contribute to society.”

SOLVING THE PROBLEM

The Department of Health and Welfare hopes to streamline training for agencies that employ new direct care workers, as employees leave, and they hire replacements.

IDHW Director Dave Jeppesen told JLOC in September that the state has increased the Medicaid reimbursement rates to home and community-based services in recent years. This allows for care worker pay increases. In Fiscal Year 2023, the Legislature gave IDHW $230 million for rate increases, and in FY 2024, the Legislature appropriated $25 million to IDHW for rates. In the pending budget request for FY 2025, the department is asking for an additional $46 million.

The Division of Medicaid also hopes to promote a campaign for the direct care workforce, to encourage people to pursue it as a job option.

Charron said they also hope to partner with stakeholders for recommendations.

“So we’re looking at recommendations beyond just rates,” Charron said. “And so I want folks to understand that that it’s not going to happen overnight. Solutions don’t happen overnight. It is beyond probably just Medicaid, but it is something that definitely deserves and needs attention.”

She said that applied to home health care, but even direct care staff at an institutional level.

“It’s a national crisis, it’s an Idaho crisis. Today, people’s lives are being impacted every day,” Charron said. “Having available direct care staff, again, kind of across that continuum of potential services, literally is a lifeline for many people. These are the supports that keep them safe to reside in their community.”

Charron knows of facilities struggling to keep doors open due to staffing, and disabled people who are showing up at emergency rooms because they need care.

“But if someone is able to reside safely and independently at home, in the community with some supports, that is where we want to support them to be for their quality of life,” Charron said. “And from a state perspective, too, it is more economical to support someone in the community than at that institutional level of care.”

During the Our Care Can’t Wait Coalition’s legislative luncheon on Thursday, Senate Speaker Pro Tem Chuck Winder told Idaho Reports the issue is on lawmakers’ radar.

“I don’t think there’s any doubt that it’ll be discussed and brought up,” he said. “It’s just a matter of whether some solution is brought forward or not.”

“So, there’s going to have to be, through JFAC and through the germane committees, work done on these issues and try and figure out what makes the most sense and how to move forward,” Winder said. “I think there’s a recognition finally, through the OPE report and others, that there’s a problem and it needs to be solved. It’s basically a problem all businesses have, and that’s how do you pay people and attract them to do the services that are needed in the community. Whether that’ll get done or not, I don’t know. But it’ll certainly be advanced and discussed and I’m sure they’ll be hearings about it.”

Larsen pointed out that everyone may be disabled at some point. Whether it’s after an accident, illness, or through age, most people will eventually need care.

“How would you want to be treated when you have an accident or you are elderly and become disabled?” Larsen said. “How do you want to be treated? Who do you want to be taking care of you? What training do you want them to have? Do you want them to be paid well so that they care about their job and they love what they’re doing? I think everyone should think about that.”