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Personal Care Attendants: KanCare’s unheralded workers

By Mike Shields | May 20, 2013

Editor’s note: This is the latest in an ongoing series of stories looking at how the transition to KanCare has been going for the state’s various Medicaid service providers.

TOPEKA—Every day a small army of Kansans — officials estimate there are about 16,000 of them — are at work helping some of the state’s neediest cope with the demands of daily life so that they can remain in their own homes rather than nursing homes or state institutions.

The personal care attendants or PCAs, as they are called, do all sorts of things to help: They clean house, fix meals, line out doses of medications, change adult or infant diapers, scour feeding tubes, lift people on and off toilets and in and out of beds, bathtubs and wheelchairs. They advance the pieces on a board game so a child can play with a younger brother. They let the dog out. Sometimes they are small but tough women presented impromptu tasks that would intimidate others, such as calming a large, shouting man made erratic by a brain injury.

They are people like Sally Fronsman-Cecil, one of two personal care attendants for an 85-year-old Topeka woman who is diabetic, had a lung removed and is beginning to show signs of dementia but is still in her own home.

KHI News Service

Cydney Bunner, a University of Kansas graduate student in speech pathology, is a part-time personal care attendant in the home of Shannon Graham. She is pictured here feeding Graham's daughter, Cheyenne. The girl's disability makes it impossible for her to eat food normally. She is fed and receives medications through a tube attached to her abdomen.

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Or Cydney Bunner, a University of Kansas graduate student who helps a Lawrence family that has four significantly disabled children.

Or Fred Miller, a grown-up farm kid, who does the heavy lifting for a young woman robbed of self- locomotion by muscular dystrophy and a litany of accompanying ailments.

They usually are paid between $9 and $10 an hour, generally without benefits such as health insurance, vacation or paid time off to deal with their own illnesses or problems. Collectively, they care for about 20,000 Kansas Medicaid beneficiaries any given month.

Some are employed by agencies, others are hired directly by the people or families they help. Either way, it is Medicaid that pays for their labors.

“Without the personal care attendants and the nurses in my house, I would not be able to have the children that I have,” said Shannon Graham, a Lawrence woman who became a foster mother about 15 years ago and then ended up adopting five of the children in her care. Four of the five are seriously disabled. “It can be very intimate support that is provided. They become a part of your family at that level.”<a name="continued"></a>

‘Not even considered providers’

Graham said any given week she has between eight and 10 care attendants and nurses in her home helping with the children. She hires and trains most of them herself, she said, placing ads at the University of Kansas to be seen by prospective nursing students.

One of Graham’s sons, six-year-old Max, relies on a wheelchair. He is developmentally disabled and prone to serious epileptic seizures.

Max requires “a special diet because of his horrible epilepsy,” Graham said.

“He has a nurse with him all the time at school,” she said. “These people (the care attendants) have to be trained to learn to look at him and know when he might need oxygen. If he has a seizure, there's a protocol they need to follow and these people are getting paid 9 to 10 bucks an hour.”

Because they mostly help people in their homes, the work of the personal care attendant is largely unseen by the public and they often are overlooked by policymakers. Many, if not most, are exempt from wage-and-hour laws.

When policymakers talk about Medicaid “providers,” they usually mean doctors, hospitals, safety-net clinics, even local health departments, but rarely the PCAs, who most likely spend more time with a Medicaid client than anyone else in the system.

"We're not even considered providers," Fronsman-Cecil said, describing those who do her job. "We don't have any (medical) provider we're attached to and we have no rights."

Unaffected by KanCare

When Gov. Sam Brownback launched his Medicaid makeover initiative on Jan. 1, the changes were major for most types of home- and community-based Medicaid providers.

Many reported problems getting paid on time by the new KanCare managed care companies. Others complained about the new approval regimes when ordering treatments or medications. But for the personal care attendants, there was little noticeable change. They were the ones lifting people on and off toilets before and after the changes.

Fred Miller is a personal care attendant for Tessa Goupil, a Topeka woman with muscular dystrophy. "We don't do it for the money," Miller said. Personal care attendants generally are paid between $9 and $10 per hour and rarely have benefits or job protections. Miller said Goupil is his only client. He provides her near-constant care and is assisted by one of her relatives who lives across the street from Goupil's home.

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A sheet listing the Authenticare codes.

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“They don't understand anything that's going on,” Graham said of the workers who care for her children. “The ins and outs of the Medicaid system don't really apply to them.”

“From my perspective, it’s just me, here, boots on the ground,” said Fred Miller, personal care attendant for Tessa Goupil, a Topeka woman with muscular dystrophy.

Authenticare 'horrible'

The more significant change for the personal care attendants came ahead of KanCare. In 2011, the state contracted with First Data, a company with a telephonic system for tracking the time the caregivers spend on the job. It went on line in 2012.

State officials said the new system would save taxpayers $7.6 million a year, help eliminate paperwork and minimize the potential for fraudulent or inaccurate reporting.

None of the care attendants interviewed by KHI News Service had anything good to say about the system, which requires them to dial in from a designated telephone and punch in a series of codes to verify their identity, that of the person they are helping and the various services they are providing.

For example, the Authenticare “activity code” is 11 for bathing a person under the Medicaid T109 and S5126 services categories. The code for “hair care” is 14; for “skin care,” 15 and for “nail care,” 16.

An attendant might routinely provide a dozen or more of the services and to be paid must punch in the code for each of them often while dealing with the distractions of caring for a medically fragile individual in their home. That means cell phones going off or a doorbell chiming or a dog running out from under the bed, or worse. Those who use it said it was too easy to punch in the wrong code or codes and too difficult to know when an error was made and too difficult to correct once discovered.

“We make mistakes all the time and there's no way to go back,” and correct it from the phone. “I have to call the financial management service, the payroll company, and I think they don't get paid enough to handle some of that stuff,” Miller said.

The situation becomes all the more complicated if more than one care worker is dealing with more than one client in a household, like at Shannon Graham’s home in Lawrence.

Those who use Authenticare that were interviewed by KHI News Service said it has been no better or worse since KanCare was launched.

Shannon Graham of Lawrence pictured with her five adopted children, a personal care attendant and a nurse. Four of the children are disabled and receive in-home Medicaid assistance. Front, left to right are: Carli, 24; Taegan, 5; Max, 6. Rear, left to right are Graham, PCA Cydney Bunner; Adam, 16; Cheyenne, 15; and nurse Kiran Sarai.

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“It’s horrible,” Graham said, describing the complications Authenticare created at her house. She said she continues to keep the paper records because the telephonic system doesn’t leave a record for her to easily monitor and she needs to keep track of how many hours her attendants have used. She described the same sort of problems with errors that Miller described, compounded by the number of people in her home using the services.

Unionization effort failed

In some states, such as Illinois, the personal care attendants have unionized. The Minnesota Legislature last week approved a bill that would allow them to unionize in that state and it has the support of Gov. Mark Dayton. Supporters of the move say it would allow the care attendants to secure better pay and other job benefits through the power of collective bargaining.

But Kansas has never been a particularly union-friendly state and the only known effort to unionize the caregivers here failed in 2009 when Kathleen Sebelius, a Democrat, was governor.

“It was going to be a coordinated effort that involved the Sebelius administration, the non-profits (that employ or administer payroll for the care attendants) and SEIU to form a union,” said Harold Schlectweg, business representative for SEIU Local 513 in Wichita. “Everybody would have benefited. It would have helped out the nonprofits and the workers and the people receiving that assistance.”

But the effort met opposition from Republican legislators and, Schlectweg said, the nonprofits that employed or worked with the personal care attendants also wanted nothing to do with it.

“The folks that lead the non-profits aren't a lot different from average Kansans,” he said. “They were probably moderate Republicans, not friendly to this idea of having their employees part of organized labor. And they felt they had a friend in the Sebelius administration and didn't need their workers to have a voice as an ally. It kind of fizzled and the reason was the unwillingness of the nonprofits. It would have taken that to have really been successful.”

The nonprofits declined to release to the union organizers the names and contact information for the attendants and ultimately so did the state agencies that were asked to provide the information.

The effort essentially died before it could be determined whether there was strong enough interest among Kansas personal care attendants to organize.

The close bonds that develop between the workers and those they help, their ostensible employers but not their payers, might complicate the question for some.

Bunner, the KU graduate student, told KHI News Service that she thought attendants should be paid "more than they're getting," but said she didn't know how much more would be fair. She said she had become so involved in the daily lives of the Graham family and enjoyed her job to the point "that sometimes it doesn't really feel like work."

Miller acknowledged the relatively low pay and lack of benefits for the work he does but likewise described the satisfaction he found in helping Goupil, his employer but also clearly a friend.

"We don't do it for the money," Miller said.

KHI News Service coverage of KanCare

Hutchinson Clinic's letter throws a curve to KanCare open enrollment (1/28/14)
National Disability Council again urges CMS to hold off on Kansas DD carve-in (1/14/14)
DD carve-in not approved for Jan. 1 launch (12/27/13)
National Council on Disability urges one-year delay of KanCare DD carve-in (12/13/13)
KDADS chief describes lessons learned with KanCare (12/5/13)
Other states watching Kansas as it implements ‘unprecedented’ Medicaid model (12/5/13)
KanCare reimbursement problems continue for providers (11/25/13)
Kansas dental program for children on hold because of KanCare MCO (11/11/13)
Kansas Medicaid providers complain to oversight committee (10/7/13)
Wichita hospital execs describe problems with KanCare (8/29/13)
KanCare to adopt “health home” model for treating mentally ill (7/22/13)
Kentucky’s rush into Medicaid managed care: A cautionary tale for other states (7/18/13)
DD groups largely reconciled to KanCare carve-in (7/15/13)
Advocates urge more government oversight of Medicaid managed care (7/8/13)
Independent pharmacists push for KanCare contract enforcement (7/1/13)
Payroll agents for the disabled on Medicaid say they are struggling under KanCare (6/3/13)
Personal Care Attendants: KanCare's unheralded workers (5/20/13)
House GOP leaders pen letter backing DD supports in KanCare (5/17/13)
More than 1,000 rally at Statehouse for DD carve-out (5/8/13)
Nothing to be done about coverage gap in states not expanding Medicaid, feds say (4/29/13)
As KanCare continuity of care period ends, problems persist; legislators starting to hear about it (4/8/13)
Advocates raise concerns over possible reductions in KanCare services (3/28/13)
Conferees agree on KanCare oversight committee (3/28/13)
DD advocates push to extend KanCare "carve-out" (3/20/13)
Safety-net clinics struggling with KanCare (3/4/13)
Major medical provider groups ask for longer KanCare transition (2/13/13)
Lawmakers and providers assess KanCare transition (1/28/13)
Five-part series: "Lower cost and better care: Can KanCare deliver?" (1/14/13)
Independence of KanCare ombudsman questioned (1/7/13)
KanCare special terms and conditions spelled out by CMS in a document (12/28/12)
KanCare workforce shift hampering local agencies (12/10/12)
Governor announces KanCare approval by feds (12/7/12)
More KanCare implementation details outlined (12/3/12)
Federal officials say they hope to act soon on KanCare waiver request (11/28/12)
New KanCare info included on state website (11/20/12)
Groups call for KanCare delay (11/8/12)
Go/no-go date looms this week for KanCare (10/15/12)
KanCare benefit packages outlined (9/26/12)
Provider groups nervous about lack of KanCare details (9/13/12)
KanCare Confidential (9/10/12)
KanCare contracts awarded (6/27/12)
KanCare plan panned again at public hearing (6/20/12)
Wichita KanCare forum draws more than 200 (6/19/12)
Medicaid makeover: Can Kansas learn from Kentucky? (6/11/12)
Hundreds protest inclusion of disability services in KanCare (4/25/12)
Counties weighing in on KanCare (4/9/12)
Hospital administrator to chair KanCare Advisory Council (3/29/12)
Brownback Medicaid makeover an “ambitious” plan (3/28/12)
KanCare bidders heavily courting Medicaid providers (3/19/12)
Legislators push to delay KanCare start (3/7/12)
Brownback announces managed care for all in Medicaid (11/8/11)
Kansas Medicaid makeover in the works (3/7/11)

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