Personal care worker Nate Walker demonstrates how he uses a hand-powered hydraulic lieft and a sling to help Mike Jones into and out of his bed. Walker is one of thousands of personal care workers in Wisconsin whose jobs are made possible by Medicaid coverage of home care for people who are eledrly and frail or who have disabilities. (Photo by Erik Gunn/Wisconsin Examiner)
At the age of 54, Mike Jones has spent a lifetime having to depend on others for meals and personal care.
Nate Walker is one of them. Walker visits Jones and other clients several times a week, helping with tasks that may include showering, getting people out of bed and meal preparation. He offers companionship as well.
Jones has cerebral palsy, an accident of birth, he says, when his oxygen was momentarily cut off. He requires a motorized chair to get around. Walker and other personal care aides who assist Jones use a hydraulic lift in his bedroom, along with a special sling, to help Jones in and out of his bed.
A Medicaid long-term care program allows Jones to live on his own in an apartment. “I am incredibly lucky,” Jones says, because unlike some of his fellow CP patients, his intellectual and cognitive skills were not impaired.
He’s also lucky because he can feed himself, he says. Jones has met other patients who must use a feeding tube. Nevertheless, his food has to be prepared for him. Among his favorite dishes: pasta with parmesan cheese, capers and a white wine sauce that Walker makes.
“I rely on Nate for everything you take for granted,” Jones tells a visitor. “Without the help, I’d be stuck in bed, and I’d be in the care of my elderly parents. It would be a very, very bad situation.”
For Walker, the wage is modest — about $15 an hour — but he finds the work rewarding. “I feel lucky to be able to help people for a living,” Walker says. “Helping people makes me feel better.”
Walker works for Community Living Alliance (CLA), a nonprofit that serves 11 counties in South Central Wisconsin. CLA provides care services at home for about 400 clients, most of them in Dane County, says Patti Becker, CLA’s director of program operations.
Walker is one of more than 320 employees at CLA, and CLA is just one of some 30,000 businesses in Wisconsin providing home care for the elderly and people with disabilities, Becker says. Some of those businesses might have just one or two self-employed people, while others have a sizable workforce.
An economic engine
Congress is preparing to follow through on a budget resolution enacted late last month that calls for $880 billion in cuts over 10 years from programs overseen by the House Energy and Commerce Committee. Medicaid is the single largest of that committee’s programs, and the size of potential cuts has patients, providers and health care policy analysts all wary about the outcome.
Much of their concert surrounds people who get health care — from a doctor’s visit to long-term care in a nursing home or at home — from the Medicaid program. Advocates also point out that by addressing people’s health Medicaid bolsters the broader economy as well.
Medicaid pays for nursing home care for more than half of all residents living in them. LeadingAge Wisconsin is a trade association for Wisconsin nursing homes, including those run by county governments and nonprofit organizations; its members also include assisted living homes, some of which have residents who get long-term care covered by Medicaid under Wisconsin’s home- and community-based Family Care program.
“Medicaid is the only program that pays for long-term care support,” says Lisa Davidson, LeadingAge Wisconsin’s executive director.
“Regardless of their location, their size and their services, Medicaid is a significant source of revenue to all of our members,” she adds. “And anything that would change the support that Medicaid provides would be extremely, extremely concerning — not only for the people that are receiving care now, but those that will need it in the future.”
Medicaid also pays for home care workers and supports clinics that serve low-income people, including those without insurance. By supporting people with disabilities, it can enable some of them to hold jobs themselves, or enable their family members to work outside the home.
Roughly 90,000 Wisconsinites work in the home care sector. “About $15 million a year of Medicaid dollars goes out in services and wages for the people who provide those services,” Becker says. “If you remove that wage amount from the economy, you’ll have a ripple effect there very similar to losing any other wage source.”
Forging stable health care relationships
Medicaid is a principal source of revenue for federally supported community health centers. And by covering their routine health costs, it enables patients to develop an ongoing relationship with a health care provider who can help them address illness more quickly, those providers say.
“When you don’t have health insurance, what do you do? You forgo necessary treatment. You put things on hold. You don’t access your preventive care,” says Patricia Sarvela, chief development officer at Partnership Community Health Center in Wisconsin’s Fox Valley.
Instead, patients may end up going to a hospital emergency room, “or having a preventable hospitalization and ultimately ending up with poor health outcomes,” she adds. “And when people are sick and not well, they don’t thrive in school, in their job, in life.”
Partnership Community Health has clinics in Winnebago, Outagamie and Waupaca counties. In addition to primary care, including pediatric care, the organization offers dental care and treatment for mental health and substance abuse.
It’s one of 19 community health center organizations in Wisconsin, operating in 60 locations across the state. The centers provide health care free or on a sliding scale for people without insurance with incomes up to 200% of the federal poverty guideline. The centers also have patients enrolled in BadgerCare Plus, Wisconsin’s Medicaid program for primary health care.
“Unlike some other types of health care organizations, community health centers are required to provide care regardless of insurance status,” says Richelle Andrae, associate director of government relations for the Wisconsin Primary Health Care Association, which represents the centers.
According to Andrae, 55% of the Wisconsin centers’ patients are enrolled in Medicaid, but Medicaid accounts for 73% of their revenue. The centers “would not be able to maintain the same level of care or expand the way they have without that revenue stream,” Andrae says.
A link to the work world
Julie Strenn is the president and CEO of Opportunity Development Centers Inc., based in Wisconsin Rapids. The business employs workers who provide personal care such as cooking or cleaning for people with developmental or intellectual disabilities who are living at home or in the community in long-term care.
ODC also has a staff of job developers — coaches and counselors who work with some of the same clients, enabling them to take jobs in the community. When a person is hired, Strenn says, the job developer may continue the relationship, so an employee can navigate difficulties that come up at work — a change in supervisor, for instance.
ODC’s current clients include about 400 people who are looking for jobs and 250 who are employed — “working for all kinds of businesses in the community,” Strenn says. “They’re employees that are needed in the community, sharing their gifts and talents.”
Job search assistance is funded through the state’s Division of Vocational Rehabilitation. Clients who have a job and receive ongoing support include people who are enrolled in Family Care or IRIS — Medicaid programs that cover long-term care services for people living at home or in the community.
More than 80 clients who are working have had their jobs for six years or longer, Strenn says, and another 100 have been working from two to five years.
“The work we do is proof that Medicaid dollars are supporting individuals with disabilities to be taxpayers, working and living in their local communities,” Strenn says. It also enables family members who would be responsible as caregivers full time to hold jobs themselves.
More fulfillment at lower cost
Providing skilled care at home costs on average about $4,250 a month, Becker says — less than half the $10,000-a-month cost of living in a nursing home.
And it’s a fraction of the $45,000 a month that the state spends for every resident living in a center for people with developmental disabilities, she says. The figures are included in a recent publication by the Survival Coalition, a group of organizations that serve the interests of people with disabilities.
Yet the role that this sort of support plays is often invisible. “When we do community services well, which is what Wisconsin tries to do, you don’t notice them,” Becker says.
Danielle Tolzmann is the executive director of Family Voices of Wisconsin, an advocacy group for families of children with disabilities. Medicaid support for those families ripples through the economy, she says.
“Some of those Medicaid-rooted supports allow families to have two parents working,” Tolzmann says — typically one full time and one part time. “If the supports that allow the parent to work part time were to disappear, the work environments would lose that employee. They would have to shift gears and become 110% caregiver.”
Phillip Redman is 32 years old and lives with his parents, Harriet and Rich, in Appleton. Diagnosed with cerebral palsy as an infant, Phillip has rare abnormalities in his genetic makeup and his brain.
Although doctors assumed he would never walk, his family says, Phillip learned to walk at the age of 10. His care was supported by Medicaid through the Katie Beckett waiver, which enables children who need intensive long-term care to receive that care at home instead of in an institution. At age 18, he was enrolled in one of Wisconsin’s Medicaid-funded long-term care programs for adults with disabilities, IRIS.
Had those programs not been available for Phillip, “the ultimate result would have probably been a nursing home or some type of institution,” Harriet Redman says. “That’s not physically or financially beneficial to people with disabilities or their families.”
It was in high school that a teacher saw Phillip was fascinated by the noise of a paper shredder, his parents recall.
“He loves the sound of the garbage disposal,” Rich Redman says. “It becomes an incentive for him to do things.”
With the support of the care professionals that worked with Phillip as he grew up, his family hit upon a way that Phillip “could be involved in the community,” Harriet says: Offering his services as a freelance operator of a shredding service.
The result was a small business that the family named “ShhRedman and Co.” With a caregiver, Phillip goes around to a half-dozen offices on his client list and shreds documents that are to be disposed of. The name is a pun both on the nature of the business and on Phillip’s ability to keep confidential the contents of the papers he shreds, since he neither reads nor speaks, his parents explain.
His enrollment in the IRIS home care program keeps him healthier, they say.
“When he’s inactive and more isolated he doesn’t feel as well,” Harriet says. “He gets stiff and more disabled.” The result is better care at less expense than if he were to be in a nursing home — but also greater freedom for the whole family, she says.
Without Medicaid-funded caregivers, “families, us included, would be even more dependent on support from the government,” she says. “It’s part of a sensible economy if you can keep people working and keep people active.”
This story is Part Two in a series. Read Part One: Wisconsin patients, families are wary as Congress prepares for Medicaid surgery
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