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‘In a crisis’: High rent, dwindling help hurt care for Idaho’s developmentally disabled
Idaho Statesman - 7/27/2022
When Brian Prosynchak received an offer to renew his lease, his landlord wanted to charge $900 per month.
Prosynchak, 51, who lives in Nampa, has autism and obsessive-compulsive disorder. His money is already tight. He receives $789 per month on Social Security. He works at Walmart three days a week, for 12 total hours, pushing shopping carts and making $13 an hour.
He negotiated his rent down to $710 a month. He already fears that won’t last. “It’s going to (increase) next year,” Prosynchak said. “It could be $900.”
Prosynchak is one of about 6,000 adults in Idaho’s Medicaid program for people with developmental disabilities, which pays for medical services. They face two problems in the 2022 economy: Rising rents are forcing them to live with roommates or move elsewhere, while staff shortages at support-service agencies mean they may not be receiving the care they need.
Developmental disabilities impair physical, learning, language or behavior areas, may affect day-to-day functioning and usually last throughout a person’s lifetime, according to the Centers for Disease Control and Prevention. Federal law defines developmental disabilities as intellectual disability, cerebral palsy, epilepsy and autism.
In Idaho, Medicaid pays for services that help developmentally disabled people to live on their own, rather than in institutionalized settings. Agency leaders and state government officials believe this helps developmentally disabled people integrate into their communities and achieve the most in life. Challenges related to rent and staffing are making it harder to fulfill this mission.
Now, though, “the system is in a crisis,” said Christine Pisani, executive director of the Idaho Council on Developmental Disabilities, in a video interview.
The median rent in Boise for a one-bedroom apartment is $1,211, according to Apartment List. Since March 2020, median rent has increased 47.4%. People on fixed incomes can’t keep up. They’re often forced to move in with roommates.
When Prosynchak lived with a roommate more than 10 years ago, they sometimes stole each other’s belongings. Prosynchak occasionally moved his roommate’s items around. He does best living on his own.
Liberty Healthcare, a company contracted by the Idaho Department of Health and Welfare, assessed Prosynchak to need about 25 hours of individualized at-home support a week. The annual assessment determines how much at-home support Medicaid will pay for. A direct-care worker helped him go shopping, pay bills, take medications and attend medical appointments.
Because of recent staff shortages, he stopped receiving that support in November and hasn’t had it since.
“He can’t exist without that support,” said Wendy Eckert, owner of Unity Services in Meridian and a longtime friend of Prosynchak’s. Unity Services, a company contracted with the state, provides counseling and long-term case management.
Eckert has filled in by volunteering for Prosynchak by taking him grocery shopping, making sure his home is clean, making sure his air conditioner works, and doing all sorts of day-to-day living tasks. A nurse he hired helps too, by picking up where Eckert leaves off. Despite the assistance, he’s still not receiving the care he’s supposed to be getting.
As the direct-care workforce shortage deepens, this scenario is becoming more common.
“We have people falling through the cracks,” Eckert said.
High rent affects living situations
Some Medicaid recipients may prematurely move into nursing homes or assisted living. Some may experience worse.
“My true fear is homelessness,” Pisani said.
Pisani has heard stories of developmentally disabled people living long-term in hotels or assisted living centers instead of on their own. Her department, the Idaho Council on Developmental Disabilities, is under the state’s jurisdiction. To her, the housing crunch and staffing shortages are intertwined. Institutional settings like nursing homes also lack workers.
If there’s nowhere locally to live and no one nearby to provide at-home services, the Department of Health and Welfare has recommended looking elsewhere in Idaho, Unity Services counselor Angelia Thorne said. The recommendation is often to eastern parts of the state like Pocatello, Thorne said.
“The issue with this is they have to be ripped away from their family, their friends, what they’ve always known, and they’re relocated,” Thorne said. “And oftentimes there’s no one to help the relocation process.”
On their own and in a new place, people with developmental disabilities frequently fare even worse, Thorne said. There may already be a high level of abandonment in their lives. Their behavioral problems can intensify. Suicidal tendencies can emerge.
“If we don’t figure this out soon,” Pisani said, “we’re going to lose the option for people who live in the community.”
Housing costs take a toll
Nearly two years ago, Dillon Melle moved into his Meridian apartment with a roommate and paid $500 per month for rent. Now he pays more than $700 per month. Still, he’s one of the lucky ones, at least for now. He receives services he needs and manages to pay rent, albeit with a roommate.
The 23-year-old works at a Jacksons convenience store. He makes $15.25 per hour and works 32 hours a week. He said he’s earning enough that he doesn’t qualify for Social Security despite his attention-deficit/hyperactivity disorder and intellectual disability caused by childhood cancer.
Melle was diagnosed with brain cancer when he was 11. Though he’s now in remission, he’s still recovering in some ways. Melle receives help from Medicaid to pay for a financial adviser. Since his roommate receives support 24 hours a day, Melle relies on the roommate’s provider for car rides. Otherwise he’d have to pay for his own rides. In Meridian, there’s no Medicaid-funded provider of non-medical transportation, Thorne said.
“I know I can make it on my own. I know how to clean my house, I know how to do my dishes,” Melle said. “But it’s the ease of life.”
Based on his assessment, Melle can receive assistance from a direct-care worker for about 10 hours a week. Together they go grocery shopping, clean the house and take care of basics. For the most part, he can be independent.
Since his roommate requires more attention, Melle can benefit from an assistant being around more often. By living together, the staff member can care for two people at once.
Melle recalls the headlines when Boise was ranked as the most unaffordable housing market in the country. He described that as “definitely a sucker punch.”
Though he’d like to be as independent as possible, Melle recognizes the limitations he faces.
“If I, for example, were living on my own, I would get a paycheck and I would just barely scratch the surface,” Melle said. “I can pay my rent (and not much else).”
Staff shortages affect agencies
Amy Tobiasz owns Residential Habilitation of Idaho, a Boise business that hires direct-care workers to provide supported-living services to people with developmental disabilities in their homes.
A few years ago, Tobiasz was paying employees $12 an hour. Last summer, Tobiasz increased pay to $14 an hour. This past spring, she increased to $15 an hour. She’s increased hiring bonuses too.
But it’s not enough. She has about 70 employees. To fill her agency’s need, she’d need about 30 more. Staff members work overtime. People burn out. Shifts go unfilled.
“Just seems to be getting worse by the day,” Tobiasz said by phone.
Tobiasz’s company is reimbursed by Medicaid at rates set by Health and Welfare. While companies in other industries can raise prices, Tobiasz is at the mercy of whatever those set prices are. They can’t be changed easily, she said.
As fast-food restaurants and retail stores bump up wages, agencies providing direct-care help like Residential Habilitation of Idaho have been left behind.
Clients thrive when they have stability and consistency, Tobiasz said. The staffing shortages have created the opposite. The quality of care has gone down. Clients’ negative behavior has gone up.
Kelly Head-Halladay experiences the same problems. She is the executive director of operations and development at Westcare Management, which oversees Boise service provider Crossbridge.
Head-Halladay has watched those other industries offer higher pay and better benefits, and she recognizes the essential care for people with developmental disabilities is a hard sell to potential employees. Staff members must deal with emotional swings and difficult physical tasks, like helping people go to the bathroom.
Head-Halladay said some direct-care workers earn just $11 an hour. In the Boise area, she called that “pretty horrific.”
“This is not just a staffing issue. This is an access issue for the individuals that we provide services to,” Head-Halladay said by phone. “It’s a free fall.”
Solving direct-care issues
This past spring, Idaho Senate Minority Leader Michelle Stennett, D-Ketchum, requested a statewide study of the direct-care workforce by the Idaho Office of Performance Evaluation, a nonpartisan, independent office of the Legislature that evaluates whether state-government programs are operating effectively.
In her letter requesting the study, Stennett wrote that, since July 2020, 27 assisted living centers had “voluntarily surrendered their license, closed a building or (gave) notice to all Medicaid residents. Inability to find adequate staff is the reason cited for the closures.”
Stennett wrote that assisted-living centers limited admissions or discharged residents because of staff shortages. Five developmental- disability service providers and 81 home- and community-based service providers closed.
“It is imperative that Idaho have a sustainable highly qualified direct-care workforce able to meet the complex and essential needs to maintain people’s ability to live and work in their home communities,” Stennett wrote.
Eckert, of Unity Services, proposed an emergency rate increase, meaning agencies could still be reimbursed fully if they paid their workers more.
Thorne, of Unity Services, thinks a potential solution is to allow money from someone’s Medicaid to pay for rent.
Tobiasz, of Residential Habilitation of Idaho, suggests revamping the entire system in a way that would allow companies to pay employees more and find more effective ways to properly train staff.
Pisani said wages aren’t high enough to allow workers to save for retirement, and there’s usually little vacation time allowed. There’s “virtually no way” for someone to be a direct-care worker and support a family, she said.
“We value the computer technician more than the people that care for humans, as far as wages,” Pisani said.
The Office of Performance Evaluation is studying the industry for the next several months and plans to report its findings next legislative session, Pisani said.
The study’s goals include finding recommendations to assist Idaho in creating a sustainable and long-term direct-care workforce. Pisani is counting on the Legislature to grasp the urgency of the problem and create policies to address it.
“I’m holding a lot of hope,” Pisani said.
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