Caregivers for disabled lament Medicaid cuts

The job is hands-on.

Lauren Harding grips the back of the woman's tie-dye sweatshirt, her right hand providing just enough support as Tasia Tanner-Gesner shuffles from couch to wheelchair.

Harding follows her closely as she rolls into the kitchen, buckled in and wearing a foam helmet dotted with Disney stickers. Harding's left hand holds a rack open as Tanner-Gesner reaches from the sink to the dishwasher.

Harding points with her right hand to where the cups go.

As a client coordinator for Stone Belt, a nonprofit organization in Bloomington, Ind., that provides education and support for individuals with disabilities, Harding oversees a home for people with developmental disabilities. Only two of the home's eight employees make more than $9 an hour, she says. The staff's list of chores: Help bathe a woman who can't do it alone, help clean up after someone who can't always do it for themselves, help calm a person whose mind can go off track.

Harding's left hand swings back and forth. "I could stand behind a cash register at a grocery store, doing this," Harding tells the (Bloomington, Ind.) Herald-Times, motioning as if she's scanning a can of soup. "I would make the same amount of money and wouldn't be exhausted."

Those whose hands care for people with disabilities are frustrated. Indiana Medicaid funding has been cut for the past five years and pay for the state's personal care aides hasn't kept up with inflation. In 2012, more than a third of those caregivers were receiving food stamps.

The question becomes how long the best staff, the employees who know most about their clients' needs, will be able to stay in this job rather than moving on for more money or less headache. A third of Stone Belt's new hires will no longer be there after six months. Local counterpart LifeDesigns, a partnership between the caregiver organizations Christole and Options for Better Living, saw its yearly rate of turnover climb to 63% following the merger in 2012. A national average of 50% has plagued the residential services industry for decades.

Even as care providers' budgets shrink, the need for direct-support staff will only increase with aging "baby boomers." Researchers have estimated if turnover remains at 50% nationally, nearly a million new caregivers will have to be hired in 2020.

Today's direct support workers have to weigh the rewards of caring for others with the job's effects on their own lives.

More than a few of Harding's staff will make regular visits to their nearest payday loan center. They will ask for raises from Stone Belt, but the nonprofit has no money to spare.

Some of those caregivers' hands move on to answering phones or ringing a gas station cash register.

Harding can't blame them.

"The stress can be overwhelming at times," she said. "People do get to their wit's end."

After Brooks Smith's weekly manicure and pedicure, his mother, Bonnie, drops him off at LifeDesigns' group home. "Brooks is a VIP," she says. Tony Keyt, an older man in a sweater, can't be roused out of his lounge chair as he reads his newspaper.

He raises his hand and says, "Five minutes," as his caregiver waits.

Half the age of their clients, the staff are spirited. One holds out a toy for the household cat, "Crunchwrap Supreme," a stray found at Taco Bell. Keyt finally gets up to set the table for dinner and taps the right shoulder of each caregiver as he passes by to their left.

Keyt and Adam Nardi, a direct support professional, flatten mounds of ground beef with their hands. "I'm getting paid to barbecue," says Nardi, who has worked with the agency five years.

This is the ideal, Bonnie Smith says, "A-plus." She's assigned much worse grades to her son's caregivers in the past.

More than 400 state regulations govern how to run a group home. How to cook, how to clean, how to fill out paperwork — it's a narrow path built with the hope it would lead away from the history of abuse that remains a legacy of the state hospital system.

Parents such as Bonnie Smith have spent the better part of their lives warding off harm to their children. When her son was 5, a pediatrician in New Orleans told her, "You have two lovely daughters. Put Brooks in a mental institution and forget about him."

His treatment eventually led to Indiana's Muscatatuck and Madison state hospitals, but Bonnie Smith kept watch. Once, a doctor increased Brooks' dose of the powerful tranquilizer Thorazine to 600 grams, infuriating Bonnie. "That doesn't put you to bed. That puts you under the bed."

LifeDesigns CEO Susan Rinne understands why Brooks Smith is a "VIP." His mother fought her way up to the U.S. Supreme Court and testified before Congress to move people out of state hospitals and into group homes. There is no going back, and an "A-plus" is not an easy grade to earn from someone like Bonnie Smith.

"When we see things out of order," Smith said, "we complain."

The hands caring for Brooks Smith at LifeDesigns are young but experienced, with years, not months, of time in the industry. But Bonnie Smith rolls her eyes when she hears the word "turnover."

This group of staff she likes. The group before them, not so much.

Staff changes can be for better or worse. The year following the Options and Christole merger and the turnover spike, LifeDesigns' nine group homes averaged more than twice the state average for deficiencies in Indiana Department of Health survey reports. A box spring at one home was rusted over where metal met a urine-soaked mattress. There was the time an overnight staff member was asleep on a couch, waking only to yell down the hall at a client who was throwing up in the kitchen.

Five of seven clients at one group home in Ellettsville, Ind., lost their Medicaid coverage, which funds most group home care, either because the nonprofit's staff allowed clients' bank accounts to exceed Medicaid's $1,500 maximum for eligibility or they failed to fill out paperwork to help clients renew the insurance. Two residents at another group home were also affected.

One resident who lost coverage was charged $260 for "foot and ankle" out of his personal bank account, even though LifeDesigns is required to pay for uncovered medical expenses. LifeDesigns eventually reimbursed everyone affected by the lapse.

The agency reduced its rate of turnover to 36% in 2013, but a bad year with violations of state rules was a reminder of what turnover can bring. Work isn't always documented, support plans aren't always followed, because somebody doesn't always know what to do.

"I would say some of that was related directly to some of the turnover we had at some key positions," Rinne said. "We lost some historical perspective and some of the people who were really good at the day-to-day supervision."

Dixie Chaney, a client at a Stone Belt group home, rocks back and forth on an easy chair and watches SpongeBob SquarePants.

She's a gentle soul who came to Bloomington in 1993 from Muscatatuck, protective of her food and afraid of water. She perks up when reminded of Easter, putting her hands by her ears to croon about a bunny that hop-hop-hops.

Some clients are young at heart. Some things these ears aren't meant to hear.

One Sunday, a Stone Belt employee erupted into a profanity-laced tirade, "yelling and screaming nonstop," according to a state Department of Health surveyor's interview with a client. She used a four-letter word to complain about cleaning things up. She cursed the day as she wished for its end.

The employee was fired last March.

"Totally unacceptable," Stone Belt CEO Leslie Green said.

Green's organization screens applicants to try to root out potential abusers. Interview questions psychoanalyze prospective hires about why they want a job, in which an answer that uses "taking care of" a person rather than "supporting" may be enough to eliminate a candidate.

Amy Hewitt, director of the Institute on Community Integration at the University of Minnesota, says LifeDesigns and Stone Belt are "two of the good ones." Stone Belt, which she worked for in the 1980s, has averaged 29% turnover during the past three years.

Turnover can range wildly, from 15% to 300%, Hewitt said. It depends on whether staff have training opportunities and can feel competent in a high-stress job. It also depends on whether care providers are honest with applicants about the reality of the job.

Still, wages matter. And, nationally, shrinking funding has forced agencies, mindful of potential overtime costs, to hire less qualified people to bring up staff numbers.

"Employers feel pressures to fill vacancies. Over the years, they have lowered the bar of who they will hire in their organizations," Hewitt said. "They are less careful about who they will bring in to the organization because they are desperate to fill shifts."

Every year since 2009, a byproduct of lower tax collections during the economic downturn, the share of Medicaid dollars Indiana has allocated to care providers for group homes and supported living has decreased — 3% per year for group homes and 7% for supported living. This year, the rate of reduction fell to 1% and 5%.

That means serving more with less. In 2008, Options' revenues were $8.4 million and the agency served 273 people, according to Rinne. By 2011, before the merger, Options' funding dropped to $7 million for 285 people.

LifeDesigns was able to reduce costs and add buffer between revenues and expenses by cutting administrative staff in the Options-Christole merger, but the combined organization's revenues continued to dip from 2012 to 2013 by more than a million dollars. Stone Belt, facing similar cuts, reduced pay and benefits for much of its workforce.

The downward trend in wages doesn't bode well for the future, considering the increasing demand for services. An HHS study in 2006 found that at a consistent rate of 50% turnover, the direct-care industry would have to find around 900,000 new hires in 2020 because of the country's aging population, both "baby boomers" and people with disabilities whose life expectancies are increasing.

And turnover comes with its own cost. In 1998, researchers at the University of Minnesota found the price of replacing 50% to 70% of the national direct support workforce, at a rate of nearly $1,400 for training each new employee, cost the healthcare system between $200 million and $300 million per year. Last year, LifeDesigns hired and trained 85 new direct support professionals at a cost of $136,000.

Those costs only will go up if predictions hold true and funding continues to drop.

"You have people who are legislators who set the rates," Hewitt said. "It's not people who are looking at demand or quality of services. It's fickle, because it's at the whim of the government's spending priorities."

A muffled scream answers Lauren Harding's knock. From outside the home, the sound is disturbing. But inside, it's understood as something sweet.

Harding, pleased, knocks one more time.

"Stephanie, she loves answering the door," Harding says.

Footsteps draw closer. The door swings open. A middle-aged woman in a red apron stares back with her mouth wide open. The greeting continues like a siren, a happy "hello" from someone who can't use words.

The client is in the caregiver's hands. An employee such as Harding, who knows the difference between excitement and a cry for help, is invaluable in a profession where lives are literally at stake.

One incident more than a year ago showed how important oversight is in this industry. Caregiver Ken Aker had contracted for LifeDesigns, and before that, Options for Better Living, for about a decade. State law mandated the company should have been sending employees to check on Aker and his client, Tammy West, twice a month. But no one had visited the home in three months when West, a woman with cerebral palsy, was rushed to the hospital in January with severe bedsores.

West died, and Aker is awaiting trial on a felony charge of neglect.

After that incident, LifeDesigns initiated an internal review of its oversight procedures last spring, and made changes. But not everything was caught, and residents would later lose Medicaid coverage because the agency had failed to adequately monitor clients' finances.

No one lost medical care during the lapse, and certainly no one suffered physical harm. But it showed what can go wrong in a system where every aspect of a life is in someone else's hands.

Keeping the best people to watch over clients is imperative. But there are no easy solutions. Wages matter, but raises by themselves would bring their own problems. The political push now is for a minimum wage of $10.10 per hour. Stone Belt's Green would love to see it for her employees, but it would destroy her agency.

"Financially speaking," Green said, "that would close our doors."

Erin Meyers isn't waiting for answers. As a house manager for Stone Belt, she has to work until the job is done. That means giving direction to Betsy Higgins, a client, who is working to form salmon mush into a loaf for tonight's dinner.

It can also mean a 13- to 14-hour shift, if another employee has to call out sick. She makes the same money she did years ago as a teaching assistant in Indianapolis. Later in the evening, she'll be responsible for sorting through a client's medication for the proper dose.

"What we are paid, for what we do, it just doesn't match up," she says.

She takes a napkin and wipes down the speckled wooden countertop and says, "I thought I was messy."

There are rewards for what can seem like a thankless job. Harding is currently developing a plan for a client to get their driver's license. For others, the goal might be to learn how to wash their hands.

First, they might learn the parts of the car. First, they might learn how to turn the faucet on. It could take them both five years to find independence, but it's worth it.

Meyers, who has been at Stone Belt for more than four years, is attached to her clients. After the deaths of a couple of the home's residents, she was there to provide a sympathetic shoulder.

Hewitt and researchers at Indiana University, including Teresa Grossi, had devised a plan to give people like Meyers and Harding more reason to stay.

In 2005, Hewitt, Grossi and others received funding from Indiana's Family and Social Services Administration to work out a credentialing program that would give direct support professionals a pay raise if they completed three levels of training. Ivy Tech Community College agreed to administer the classes during the trial period.

Studies have shown that giving employees a career ladder and opportunities for ongoing training lead to better employee retention. Indiana, Hewitt said, could have been a leader — could have been. New leadership at the Division of Disability and Rehabilitative Services stopped the project in midstream in 2009.

"They just crossed it all out," Hewitt said. "They were about cutting money, not new program development."

Politicians rarely speak ill about the need for programs, but problems continue with few solutions. Harding continues to scrape by, paycheck to paycheck. Meyers continues to sort through clients' medications, looking to the gas station down the street and wondering if she could work there and support two kids without going into debt.

"The vast majority of people say we want individuals with disabilities to have the care they deserve and in the political spectrum, there is no party division on that," Stone Belt's Green said. "But when it comes down to the brass tacks of what it takes to support people, things don't go as far as they should."