With Self-Direction, People With Disabilities Gain Control
MENOMONIE, Wis. — A decade ago, Lori Sabby-Lemke was working two jobs while caring alone for her teenage son Dustin, who was born with a severe form of cerebral palsy.
She was tired, lonely and broke.
Dustin’s only means of mobility — a rusted, wheelchair-accessible minivan with holes in the floorboards — sat idle in the weeds outside her mobile home because she had no money to fix it. Worse, her insurance company repeatedly denied requests for more supports to care for Dustin at home.
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Then, in the fall of 2010, a social worker told Sabby-Lemke of a new state program that could change everything. It was called IRIS and it was designed to give people like Dustin power over their lives. For the first time, the family would control their own medical budget. Equipment and services that once seemed unattainable — such as a wheelchair-accessible bathroom and a working van — suddenly were within reach.
“It felt like we had emerged from the darkness and into the light,” Sabby-Lemke said.
With IRIS (Include, Respect, I Self-Direct), Wisconsin became one of the first states in the nation to adopt a model known as self-directed Medicaid benefits. The controversial move shifted the balance of power away from insurers and government bureaucrats, and empowered individuals to make their own choices.
Today, Wisconsin leads the nation in most measures of promoting independence and quality of life among people with disabilities. Fully 33 percent of Wisconsin residents with intellectual and developmental disabilities report directing their own Medicaid services — nearly three times the national average, according to a 2018 national survey.
“The IRIS program is the best thing that ever happened in this state,” said Patti Rood, of Elk Mound, Wis., whose adult son is enrolled in the program. “It’s living proof that, when you trust people to make their own decisions, they live richer and fuller lives.”
So far, Wisconsin’s fervor for self-direction hasn’t spread west across the border. In Minnesota, county case managers and large service providers still dictate major decisions for people with disabilities, consigning thousands to isolating group homes rather than independent lives in the community. In Minnesota, only 8 percent of people with intellectual and developmental disabilities report directing their own services, among the lowest rates in the nation.
Officials at the Minnesota Department of Human Services (DHS) pointed to data showing a steady rise in the percentage of Minnesotans on Medicaid choosing to direct their own services, in part because of a staffing shortage among providers. Self-direction will probably grow in popularity as the state embarks on a multi-year effort to simplify and streamline its complex system of Medicaid benefits, known as “waivers,” said Alex Bartolic, disability services director at the DHS.
The movement that Wisconsin embraced is built on a radically simple concept: That people with disabilities will lead happier and more fulfilling lives when they’re in control.
It appeared on the national scene in the late 1990s, with an experiment known as “cash and counseling” that allowed Medicaid recipients to receive a fixed monthly sum to hire their own caregivers, rather than have the government pay residential facilities many times more to care for them.
One national study found that people in the program were nearly 20 percentage points more likely than others on Medicaid to say they were satisfied with their lives and were less likely to have health problems or accidents related to their care.
Wisconsin’s version of the strategy went statewide in 2008. The state organized a broad network of specially trained social workers, known as IRIS consultants, who make house visits and advise people on how to use their funds. People with more physical disabilities can spend their IRIS funds on home nursing services and specialized medical equipment, such as mechanical ceiling lifts or wheelchair ramps, that help them avoid costly institutional care. Decisions are made swiftly because there is less interference from counties and providers.
When Rood needed a new stroller for her growing son, Richie, who has spastic quadriplegia, she simply submitted a handwritten request with a doctor’s note to her IRIS consultant. Within a month, a new stroller arrived on the doorstep of her mobile home in western Wisconsin.
“The bureaucratic red tape that you would expect in a government program is pretty much nonexistent,” Rood said.
Today, nearly 22,000 Wisconsin adults with disabilities participate in IRIS. The program is so popular that, when former Gov. Scott Walker proposed a change that would effectively have eliminated the program, hundreds of families launched a grassroots campaign to block the effort.
The popularity of IRIS may explain Wisconsin’s low use of costly facilities. Only 10 percent of Wisconsin residents with intellectual and developmental disabilities live in group homes, about a quarter of Minnesota’s rate.
Kathryn Burish felt a surge of excitement as she paced the living room of her apartment in a suburb of Milwaukee.
It was a Friday evening and Burish had big plans. Her three closest friends since childhood were going to a play and then a night on the town before returning to her place for their annual pre-Christmas slumber party. There would be gifts, dancing in her living room, and then a large pancake-and-eggs breakfast.
Burish, who is 23 and has Down syndrome, was already dressed up in her most elegant plaid scarf and long skirt.
“I sometimes feel like the luckiest person in the world. I get to choose how I want to live and whom I want to live with.”
Such a night would not have been possible without IRIS. Five years ago, Burish’s parents enrolled her in IRIS and directed most of her annual budget toward help with daily living skills, such as cooking and managing a budget. Much of the rest went toward job training and transportation, which helped her keep a job as a medical records clerk.
Today, she lives in her own apartment and requires only a few hours of caregiver support each week. Many weekends, Burish and her “three amigos” can be seen promenading through the Milwaukee Makers Market, a bustling arts and crafts fair.
“The beauty of IRIS is that Kathryn can now do what any other hip, 23-year-old woman would want to do with her life,” said her mother, Julie Burish.
Still, the rising costs of IRIS have alarmed some Wisconsin legislators. Its outlays have swelled along with its enrollment, from $277 million in 2014 to $622 million in 2018. Critics have pointed to reports of people using IRIS dollars for trampolines and extravagant vacations.
But a recent analysis found that monthly Medicaid expenditures by IRIS participants were 15 percent less, on average, than spending by participants in Wisconsin’s alternative, a managed-care program known as Family Care. In 2018, IRIS enrollees spent $2,845 per month, while Family Care enrollees spent $3,268, according to state records.
Far from being extravagant spenders, families in the IRIS program consistently underspend their allocated budgets by 10 to 15 percent, state data shows. And overall, Wisconsin spends significantly less through Medicaid waivers than most states. The state paid $26,700 per waiver recipient in 2017, compared with $33,900 in Minnesota, federal data shows.
“Families are used to squeezing every last dime out of their budgets,” said Matthew Bogenschutz, an expert on self-direction at Virginia Commonwealth University. “They carry that same fiscal discipline forward with their use of public funds.”
Snow flurries and a biting wind were blowing over the wooded hills outside Menomonie when Sabby-Lemke rolled Dustin onto the back porch of her mobile home. With the help of a portable lift paid for by IRIS, she and her husband, Tom Lemke, gently lowered Dustin’s 180-pound frame into a hot tub. As he sank into the steaming water, Dustin let out a squeal of delight and a grin spread over his chiseled face.
The swirling hot water soothes Dustin’s chronic muscle pain and spastic limbs, conditions related to his cerebral palsy. With letters of support from his doctors, the IRIS program paid for the mechanical lift and one-third of the cost of the hot tub. “It’s been a godsend,” Sabby-Lemke said. “The pain and the spasticity just melts away.”
The impact of IRIS is visible everywhere in the Sabby-Lemke home. Dustin’s shower is wheelchair-accessible, and a mechanical ceiling lift helps transfer him in and out of bed. In the family’s garage is a futuristic, all-terrain wheelchair that enables Dustin to join his family on hikes and trips to the lake. And there is a van out front with a power entry ramp — and a working engine.
All told, the equipment has cost Wisconsin’s Medicaid program about $100,000, and it has allowed Dustin to live at home and avoid years of costly care in a group home or other institutional setting.
“This program is what enabled this family to stay together, which is the most important benefit in my book,” said Sabby-Lemke, as her family gathered for supper one evening. “After all, if you’ve got people around you that love you, what more do you need in life?”
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