Karen Barezinsky is looking for an answer to what she says is a simple question: Are the people who run Kansas’ Medicaid program planning to cut the supports she and her husband use to keep her son, Ray Santin, who’s paralyzed from his neck down, out of a nursing home?
“I can’t find out anything,” says Karen, 62, who lives in Scranton, Kan., with her husband and son. “I leave messages with Ray’s case manager, but nobody calls me back.”
Karen is worried because she’s read news stories about Gov. Sam Brownback and Kansas Department for Aging and Disability Services Secretary Kari Bruffett warning legislators that a recent ruling by the U.S. Department of Labor could cause reductions of in-home services for some people with disabilities and frail elders. That could send some of them to nursing homes, which typically are more expensive than community-based settings.
The new rule, due to take effect Jan. 1, 2015, requires state Medicaid programs to pay home care workers minimum wage and overtime. That reverses policies in place since the mid-1970s that considered them “elder sitters,” a term for paid companions whose primary responsibility involved staying with someone who is elderly or disabled.
Medicaid provides health coverage for about 420,000 low-income and disabled Kansas adults and children. Approximately 11,000 Kansans – primarily disabled adults and frail elders – receive Medicaid-funded in-home services.
In Kansas, complying with the new rule is expected to cost the state an additional $13 million to $16 million annually. Bruffett and Brownback both have said KDADS doesn’t have that money in its budget. Neither of them has yet announced plans to ask the Legislature to come up with it.
Instead, administration officials have asked the Department of Labor to exempt Kansas from the ruling or delay its implementation. All six members of the state’s congressional delegation have signed a letter in support of both requests.
Several national associations – including the National Association of Medicaid Directors, National Council on Independent Living, National Disability Rights
Network and National Association of States United for Aging and Disabilities – also have asked for a delay.
“Everyone is supportive of people getting minimum wage and being paid overtime,” says Martha A. Roherty, executive director at the National Association of States United for Aging and Disabilities, a group that represents state departments that administer programs for the aged and disabled populations.
“That’s not the issue; the issue is timing,” Roherty says. “There simply isn’t enough time for states to implement the kinds of structural changes that this requires by Jan. 1 – things like changing state statutes, having to rewrite state Medicaid plans, getting those changes approved, acquiring funding, coming up with the technology for keeping track of all the hours worked. I mean, it’s virtually impossible, especially since most states’ legislatures won’t be in session until after Jan. 1.”
Others disagree. “This is not a sea change,” says Deane Beebe, a spokesperson for Paraprofessional Healthcare Institute, a national organization that advocates for home health aides, nurse aides and personal care attendants.
“This is a change that back on Dec. 11, 2011, President Obama said he was going to make happen,” Beebe says. “It’s not new; it’s been in the works a long time. People can’t say they’re surprised. This wasn’t thrust upon anyone overnight.”
Beebe says the ruling was driven by long-standing concerns that “we can’t build a long-term care system that’s going to meet the needs of an aging population and help people with disabilities live independently and not pay workers minimum wage, not pay them overtime and offer them zero benefits.”
According to a Department of Labor report on the ruling, at least 15 states already have laws that require government-funded home care programs to pay workers minimum wage and overtime.
Losing sleep support?
Medicaid pays Karen Barezinsky and her husband, Richard, $9.64 an hour to care for Santin, who was a star athlete at Sterling College before suffering a broken neck in an automobile accident in 1995. He’s been quadriplegic since.
“He’s paralyzed from the neck down,” Karen says. “He can shrug his shoulders, but that’s pretty much it.”
Neither of the Barezinskys is paid overtime. Instead, Karen’s care hours are capped at 40 hours for a seven-day week, while Richard is paid for up to 30 hours a week.
“(Richard) takes over for me when he gets home from work,” Karen says, adding that her husband is a pavement engineer with the Kansas Department of Transportation. Before Ray’s accident, Karen was Scranton city clerk.
Medicaid also pays Karen’s 47-year-old daughter, Tracy, $25 a night, seven nights a week, to provide what’s called “sleep cycle support.”
“Basically, she gives us relief at night. She lives just a couple blocks away,” Karen says. “She’ll brush his teeth, give him his medicine, turn him so that he’s not in one spot too long, massage him if he gets a knot, empty his night catheter bag. If he needs anything, she’s there to get it for him.”
Typically, Karen says, Tracy spends at least six hours a night with Ray. Tracy, who works as an orthodontist’s assistant by day, helps care for Ray seven nights a week.
The Department of Labor ruling isn’t expected to affect Karen or Richard, because each is paid more than minimum wage and neither puts more than 40 hours on their weekly time cards.
“That’s not what I’m worried about,” Karen says. “I worry about sleep support, because it looks like that’s what they’ll end up cutting.”
The ruling requires that Tracy be paid at least minimum wage, which is $7.25 an hour. So if she puts in six hours a night, she would be paid $43.50 a night. And if by week’s end she has worked more than 40 hours, she would need to be paid overtime.
KDADS officials have said they expect the ruling to increase the state’s share of night support costs by $6 million a year, almost half of the projected $13 million to $16 million state cost increases due to the ruling.
Currently in Kansas, about 1,400 people receive Medicaid-funded night support services.
“I’m not saying that if we lost night support, Ray would have to go to a nursing home,” Karen says. “We’re family, and we’re not going to let that happen. But I will say that I’m getting close to 65, and I don’t know how much longer I can keep going like I have. If we lost that sleep support, it’d be just that much harder on us and on Tracy.”
“And what about all the disabled people out there who are like Ray but don’t have family like he does?” she says. “What’s going to happen to them?”
According to KDADS records, about 14,600 full- and part-time workers provide Medicaid-funded in-home services. The department does not track the number of workers who are caring for family members.
A challenging job
Angela de Rocha, a KDADS spokesperson, says the agency has no intention of offsetting the ruling’s costs by shaving hours off case plans that define how many hours of service a person needs to live in a community-based setting rather than a nursing home.
But in an effort to avoid paying overtime, she says, beneficiaries may be pressed to find additional workers if the ones they rely on now are logging more than 40 hours a week caring for one or more people.
In Kansas, Medicaid beneficiaries who receive in-home services are allowed – and encouraged – to choose their care workers.
Kansans with disabilities say finding reputable people who are willing to do the often-stressful work is not as easy as it sounds. Job turnover is high.
“When I advertise to find to somebody for night support, I get emails back that say, ‘Are you sure that’s right? That can’t be right, that’s not even minimum wage. Who’d want to do that for that price? It’s not even minimum wage,’” says Jason Gallagher, who has limb-girdle muscular dystrophy and lives in a federally subsidized apartment in Overland Park.
He relies on five day and night workers – one full-time, four part-time – for assistance in getting in and out of bed, using the bathroom, preparing meals and running errands.
“The last time I had to find somebody, it took me three or four months,” he says. “It’s extremely difficult. It’s like, when I’m in my (motorized) wheelchair, I can get to my cell phone or I can get out the front door. But when I’m in bed, I can’t do anything. So it’s really important that you get good, responsible people who you can absolutely trust, because that’s what you’re doing. You’re trusting them with your life and with all your stuff.”
Gallagher, 34, says he dreaded the prospect of his having to find more workers but welcomed the likelihood of a pay increase for them.
“The ruling will be good for me if the state pays it, because I think it would make it easier for me to find people,” he says. “But if the state it doesn’t have the money, and to make it work they’re going to reduce my hours – that would cause major problems for me. I don’t know what I would do.”
KDADS is aware of this and other “unintended consequences” tied to the ruling, de Rocha says. It’s why, she says, the agency’s “focus right now is on DOL to come to a resolution that protects workers and our self-directed consumers.”
Department of Labor officials have not said if or when they might respond to the requests for delaying the ruling.
“Over the last few months, the Department has received letters urging the Department to implement the rule on time, and has also received letters requesting additional time for compliance,” Tania Mejia, a spokesperson for the Department of Labor, wrote in an email. “The Department is carefully considering these requests. Should the Department have any relevant announcements concerning the rule, a notice will be published in the Federal Register.”
Bill Dombi, vice president for law at the National Association for Home Care and Hospice, says he doubted that the department will agree to exempt Kansas from the ruling.
“I don’t know of any legal basis for them to treat one state, in this case Kansas, differently than all the other states,” says Dombi, an expert on health care wage-and-hour laws. “But there is a basis for their delaying it or, for that matter, pulling it all together.”
He declined to predict whether federal officials would agree to a delay.
“I know this isn’t what Kansas wants to hear from an outsider in Washington, but if I were you, I’d plan on this rule taking effect on Jan. 1, 2015,” Dombi says. “And the best way to deal with it, frankly, is to finance it. Because the alternatives are going to trigger higher rates of turnover, less job satisfaction and reduced quality of care.”
Dave Ranney is a health reporter with Heartland Health Monitor, a reporting collaboration among KCUR Public Radio, KCPT Public Television, KHI News Service and Kansas Public Radio. He is based at KHI News Service