'This is about a kid's well-being': Iowa's Medicaid challenges continue

October 16, 2016 | 6:30 am
Jeff Edberg (from left) and Colin Edberg, 14, share a moment as they look through a photo album during a birthday party for Colin at Hills and Dales in Dubuque on Monday, July 4, 2016. (Stephen Mally/The Gazette)
Chapter 1:

Six months into the state’s move to a capitated Medicaid program run by three private managed-care organizations, Jeff Edberg was a bit confused by a letter he received just this past week by his son’s insurer, AmeriHealth Caritas Iowa.

The letter stated that his son Colin’s care at Hills and Dales — an intermediate care facility in Dubuque that cares for medically fragile children — had been approved for September to December.

“Colin has been a member since 5-1-16,” Edberg said in a phone interview from Iowa City on Friday.

When he called to get a better understanding of what that letter meant — Does Colin’s care need to be approved on an annual or quarterly basis? What about the care the facility provided from May through August? — he was left with more questions than answers.

The MCO didn’t have Colin’s primary care doctor on file. It also didn’t have him listed as an individual on an intellectually disabled waiver, which grants him certain long-term services and supports. Colin has been on that waiver for 11 years, Edberg said.

Colin — who turned 14 in July — has physical and mental disabilities. He requires a good deal of time and attention, which is why he lives at Hills and Dales, a 24-hour skilled care facility, rather than with his family. Colin also is non-verbal and needs providers who are familiar with his case and history.

Colin Edberg (from left), 14, and Jeff Edberg walk down the sidewalk at Hills and Dales in Dubuque on Monday, July 4, 2016. (Stephen Mally/The Gazette)
Chapter 2:

Several early headaches

The Edbergs had run into several headaches in the first few months of Iowa’s managed care. They struggled to find a primary-care physician for Colin in Dubuque, which still was building its provider network after the April 1 switch. That caused them to change MCOs but meant Colin was without a doctor for a month until the new coverage kicked in.

“I sweated bullets to get him a primary care doctor,” Edberg said. “I couldn’t understand how they wouldn’t have that on file.”

Edberg continued to make calls to figure out what was going on. He keeps a folder to log the dates, times, names of people he speaks with and detailed notes of conversations.

He called the Johnson County Department of Human Services office, which confirmed Colin in fact still is on the intellectual disability waiver.

He called Hills and Dales and was told that all the children had been assigned a case manager who was supposed to be making monthly visits — which was news to him. When he eventually found out the case manager’s phone number, he called that to discover it had been disconnected.

But what has frustrated him the most are the lack of easy answers he is able to get by calling the AmeriHealth call center or by contacting other AmeriHealth employees.

Employees that are “incompetent about your cable TV bill are irritating,” Edberg said. “But this is about a kid’s well-being and his welfare.”

Colin Edberg (right), 14, hugs his dad, Jeff Edberg, during a birthday party for Colin at Hills and Dales in Dubuque on Monday, July 4, 2016. (Stephen Mally/The Gazette)
Chapter 3:

From providers to recipients

The state handed over its $5 billion Medicaid program this spring to three private, out-of-state insurers — AmeriHealth Caritas Iowa, Amerigroup Iowa and UnitedHealthcare of the River Valley.

Throughout the first six months of the transition, the state has maintained the managed-care rollout has been smooth, with only “minor bumps” along the way.

But the first several months of the transition were plagued with health care provider complaints of inaccurate and delayed payments. Providers across the state told legislators and the media that the managed-care organizations were making payments well-below what was laid out in contracts, forcing some even to take out lines of credit to make payroll, while others chose to stop certain Medicaid services.

Payment issues were a main focus of an out-of-session Senate Human Resources Committee meeting in July as well as the first of two Medicaid managed-care oversight meetings held by a joint, bicameral committee in late August.

This past Wednesday Amy McCoy, spokeswoman for the Department of Human Services — which oversees the state’s Medicaid Program — said it appears many of those payment problems have been ironed out.

The state is working on compiling and analyzing MCO data from the second quarter, which ended in September. That analysis should be available in late November, she said.

Now it appears some of those problems are shifting from providers to recipients. The Gazette has heard from multiple Medicaid enrollees as well as parents of children with disabilities who have run into problems accessing non-emergency medical transportation or medications or fear that services will be cut.

Corey Rew, right, and his mother Susan Rew disucssing how Medicaid allows for Corey to live independently by paying for modifications to his home as well as care givers to help him with things such as cooking and cleaning. Taken at Corey's home in Iowa City on Monday, May 16, 2016. (Cliff Jette/The Gazette)
Chapter 4:

'It's my name on the bills'

Susan Rew and her husband, for example, bought a home in Iowa City for their adopted, adult son, Corey, at the start of the summer. Corey is on an intellectual disability waiver and also has some physical disabilities that are the result of his birthparents mistreating him when he was young.

Despite his challenges, Corey has been able to live a fairly independent life. He holds a job at Hy-Vee, a direct care worker comes by several times a week to help him with meals, and his parents live nearby.

Even still, for Corey to live comfortably and safely in his new home, his bathroom and laundry room needed significant modifications.

So the Rews took advantage of a Medicaid program that helps pay for home and vehicle modifications — families are given state dollars to cover all or some of the costs. Corey’s case manager, through Johnson County, helped get the necessary approvals after the April 1 transition and the various companies from plumbers to electricians went to work.

That work was done by June, Susan said, and Corey was able to move in and get settled. But then Corey’s case manager got transitioned out because Amerigroup decided to use in-house case managers, and the Rews started receiving bills.

Susan didn’t think anything about it at first, assuming the MCO eventually would pay the costs.

It’s now October and Susan said even after many unanswered emails and phone calls, the bills are still unpaid — though she hopes they’re finally getting closer to a solution.

But some of the contractors who did work on Corey’s home are growing tired of waiting around, Susan said. They aren’t able to pay those contractors, and she fears calls from debt collectors may be next.

“It’s my name on the bills, not the state of Iowa,” she said.

Jeff Edberg (left), Liam Edberg (center), 11, Fiona Edberg (second on right), and Carol Edberg (right) watch as Colin Edberg (second on left), 14, opens gifts during a birthday party for Colin at Hills and Dales in Dubuque on Monday, July 4, 2016. (Stephen Mally/The Gazette)
Chapter 5:

'A shadow of mistrust'

Catherine Gray, who lives in central Iowa, cares for her adult son with autism, John, through the state’s Consumer Choices Option (CCO) program. CCO gives individuals on a waiver program control over a lump sum of Medicaid dollars.

Individuals can then use those dollars to directly hire employees or purchase goods and services.

Gray quit her job to care full-time for her son after she discovered he was being abused in a facility. Now the family relies on the CCO program to help cover the care Gray providers for John, who is his own legal guardian.

The family has done it this way for about three years, she said, but just a few weeks ago the managed-care company providing insurance coverage to her son pushed back.

When it came time for her family’s six-month budget review — which looks at the services being provided and the costs associated with them — the MCO told Gray that her son is not able to employ her and denied the budget.

“It was very scary,” she said. “They were casting a shadow of mistrust — that we aren’t actually providing these services to our kids,” she said.

Gray must keep detailed notes of the care she provides for her son, which are then checked over by his case manager every month.

She quoted Iowa Code to the MCO, which states that the member can choose whom he or she wants to provide care — adding code does not say that a parent cannot provide services.

“The MCO was challenging the law,” she said. “Medicaid members had the authority to make a choice.”

The budget eventually was approved, Gray said, but she worries what will happen six months from now when it’s time for another review.

“It’s just a shame,” she said. “How many other parents are dealing with this but don’t know their rights?”