Managed-care: An Iowa family's journey
Meet the Edbergs
DUBUQUE — Colin Edberg’s bedroom is filled with things typical of a 13-year-old boy. There’s a black-and-gold Hawkeye comforter on his bed and photos of his family hanging on the walls.
But Colin’s living situation is far from typical. He resides at Hills and Dales, a Dubuque-based Intermediate Care Facility for children and adults with intellectual disabilities. Colin, who lives with seven other kids around his age, is surrounded by trained staff and nurses 24 hours a day.
“This is a high-energy room,” said Marilyn Althoff, executive director of Hills and Dales.
His parents, Jeff, a commercial Realtor, and Carol, a stay-at-home mother, visit him weekly. Jeff takes him to lunch and to his favorite spot — the water room at the National Mississippi River Museum and Aquarium — on the weekends while Carole comes up during the week to meet with Colin’s teachers at Thomas Jefferson Middle School.
But starting April 1 the Edbergs, along with hundreds of thousands of other families, will have a new health care system to navigate as the state transitions from a fee-for-service Medicaid program — in which providers are reimbursed by the state for individual services — to a capitated managed-care system.
This means the state will pay an agreed-upon fee for each Medicaid recipient enrolled with the managed-care organizations, that will then reimburse providers for care. The change is expected to bring Iowa millions of dollars in savings in the first six months, according to the state.
The idea behind managed care is not a new one — nearly 40 states have moved at least some of their Medicaid and Medicare populations into managed care. This helps stabilize costs and makes managing budgets easier.
That’s one of Iowa’s main drivers behind the transition. Medicaid costs have grown from about $2.4 billion in fiscal year 2004 to $4.9 billion in fiscal year 2015, according to Department of Human Services data, due to increasing health care costs and Iowa’s decision to expand Medicaid.
But opponents to the plan say the state already manages its Medicaid costs effectively, while many providers and recipients fear the move will result in fewer services and lower reimbursements.
One thing is certain: While there are fears and disagreements on whether this is the right choice for Iowa, no one knows with certainty if the transition will be a boon or a bust. Some states have successfully implemented managed cares while others have met significant challenges.
The Gazette will be following the Edbergs throughout the first year of managed care to see how this move affects their family as well as Hills and Dales.
'I couldn't give him up'
Jeff and Carole Edberg met in Tucson, Ariz. Carole likes to describe them as being like “chalk and cheese” — that is to say, they are completely different from one another. Jeff likes loud, action movies and Carole prefers dry English comedies; Jeff didn’t graduate from college while Carole attended Oxford University; Jeff likes rock music and Carole is more inclined toward opera.
But the two fell in love, got married and moved to California. They later moved to Iowa City, where Jeff is from.
After the couple learned they weren’t able to conceive naturally, they soon turned their sights to adoption.
They found their daughter, Fiona, who is now 20 years old and off at college.
“We were so lucky with one child, we figured, let’s go for two,” Jeff said.
That’s how Colin came into their lives. They picked him up from the University of Iowa Hospitals and Clinics when he was one-day old.
They took their new baby home, but it didn’t take long for the two to realize that Colin had serious problems — both physically and developmentally.
He was almost blind and had cerebral palsy, hypertonia — which means there’s an increase in muscle tension that reduces the muscle’s ability to stretch — and microcephaly — a birth defect in which an infant’s head is abnormally small and indicates incomplete brain development.
Some people advised them to not go through with the adoption — taking care of Colin would be costly and time-consuming. The Edbergs considered it, going as far as listing him for adoption through DHS. A couple came over one day to meet Colin and as they were holding him, Jeff thought, “That’s my little boy. ... I realized I couldn’t give him up.”
They ushered the couple out of the house, decided to keep Colin and marched into what Jeff called the abyss — adopting a special-needs child without having any idea how to take care of him.
“God doesn’t call the qualified, he qualifies the called,” Jeff said. “Colin has always been a challenge, but he’s also always been a sweet boy.”
Colin lived at home with his parents and two siblings — Fiona and Liam — for the first seven years of his life. But all his disabilities meant that he needed constant attention and help.
“We had other children and we felt like they didn’t have parents,” Jeff said. “They basically had cardboard cutouts as parents.”
As Colin grew bigger and stronger, it became more difficult to care for him. Carol had to stop taking him to and from school after he knocked her out one day.
The two decided to put him in a facility that could give him more care and attention. He lived in a place in Iowa City for a few years before they moved him to Hills and Dales.
“He loves it there,” Jeff said. “He knows everyone, he talks to the cooks and high-fives them.”
Hills and Dales has been around since 1973. The facility originally only cared for children, discharging clients once they hit 18. But Althoff, the executive director, said the organization re-evaluated its mission in the 1990s and with it made the decision to also serve clients into adulthood.
That’s something Jeff is especially thankful for — he’s 64 years old and used to worry about what could happen to Colin when he is no longer able to care for his son.
Forty-nine people ages six to 42 live at Hills and Dales — they’re split into homes — apartment-like residences with bedrooms, a bathroom, kitchen and living room space throughout the main complex — with others their age. Hills and Dales is at capacity, Althoff said, and has a waiting list of about 70 names.
The facility is entirely reliant upon Medicaid reimbursements due to the complex population living there. The children and young adults need durable medical goods, adaptive equipment and transportation to and from appointments.
Hills and Dales also is in charge of coordinating its clients’ care with primary care doctors, specialists, physical, occupational and speech therapists, and the University of Iowa Hospitals and Clinics.
That makes this move to managed care very scary, Althoff said.
“This system of support is designed to help kids with complex medical conditions and with that, it has complex systems,” she said.
A lack of answers
On a cold January day, U.S. Rep. Dave Loebsack and several staff members pulled up to the Edbergs’ home in Iowa City. Loebsack was meeting with a handful of families whose children have disabilities and rely on Medicaid.
Carole set out scones, croissants and coffee while Jeff greeted the congressman at the door. Colin played in a nearby room with his nurse, Patsy.
Loebsack was meeting with the parents to talk about the looming transition, listening to fears and getting information about how the change had been playing out so far. He’s been an outspoken critic of Branstad’s transition plan, writing multiple letters to federal officials, including President Barack Obama.
The managed-care roll out did not go smoothly. The state signed contracts with four managed-care companies — AmeriHealth Caritas Iowa, Amerigroup Iowa, UnitedHealthcare of the River Valley and WellCare of Iowa — in early October.
Growth in Medicaid expenditures between State Fiscal Year 2004 and SFY2015
In the months following, the Iowa Hospital Association asked a district judge to delay implementation, a state arbiter threw out WellCare of Iowa’s contract — causing the state to reassign more than 130,000 recipients to new plans — and federal officials delayed the transition from Jan. 1 to March 1. This past Tuesday, the Centers for Medicare and Medicaid Services (CMS) set April 1 as the start date.
The biggest concern in the lead up to the Medicaid transition, the parents said, was the lack of answers they were getting from the managed-care organizations, or MCOs. Jeff said later that day that he spent about 10 hours every week calling the Iowa Department of Human Services, Colin’s managed-care organization and reaching out to elected officials for additional help.
“The people who work for the MCO are pleasant, nice people — but the answers they’re getting me are lacking,” Jeff said. For example, the representative could not tell him how many Iowans had chosen that insurance group, he said, or if the medication his other son, Liam, takes would continue to be covered.
“I am diligent,” he said. “I have called and worked to get answers. … And in the balance are my children’s lives.”
"I feel like I've been screaming since March."
- Geri Pettitt
Betsy Riesz and Geri Pettitt, both of whom have adult daughters with Down syndrome, talked about how Medicaid has helped their daughters — Sarah and Michelle — be independent. It’s provided job coaching to help them work and group homes to live in.
But since the managed-care transition was been announced, Michelle lost her case manager, Sarah’s job coaching was cut and their mothers have struggled to find answers to questions, including if the MCO received Pettitt’s enrollment packet for Michelle.
“I feel like I’ve been screaming since March,” Pettitt said.
Loebsack admitted the parents he had no idea what would happen over the next year or how things would end up.
“But I can say that we’ll keep fighting this thing,” he said.
After the discussion ended, Colin and Jeff stood in the kitchen. They were getting ready to say goodbye — it was time for Colin to go back to Hills and Dales.
They had their foreheads pressed together while Jeff spoke quietly to Colin.
“Where am I when we’re not together?” Jeff asked.
Colin touched his heart.
Waiting for a decision
It was 10 days before March 1 and there was still no word from CMS on whether the managed-care move was on schedule or if it would be delayed again. The first delay was a gigantic relief, Jeff said — it allowed for better systems to be put in place, including the potential for strong oversight.
The Senate Democrats have written a comprehensive bill that requires DHS and the MCOs to comply with provisions to protect consumers and provider networks as well as assure accountability.
On this late-February day, Jeff was taking the familiar drive from Iowa City to Dubuque to visit Colin. As he drove the one and a half hours to Hills and Dales, he thought about all of the unknowns — the facility had signed contracts with only one of the MCOs so far due to disagreements over reimbursement rates, and he worried that some of Colin’s services will be cut.
“I’d love to be wrong,” he said, “to come back in three, four, seven months and say, ‘Gee, I was being an overprotective dad and the governor really had my son’s best interests at heart.’”
Colin works with a slew of medical providers, including a speech therapist, an occupational therapist, an eye doctor and an orthopedist. He also has specialists at UIHC, goes to the hospital in Dubuque, sees a psychiatrist — who does not accept Medicaid — and takes several medications.
Under managed care, the Edbergs must cross-reference what MCOs these providers have signed contracts with — not all have — and the services and prescriptions the MCOs will cover to figure out what insurer they should enroll Colin in.
There also will be a new pre-authorization process and appeals process.
Colin screams with excitement when his dad walks into the room. Jeff picks him up in a big hug and Colin smells his dad’s hair — it helps him recognizes people.
Colin struggles to communicate, his words don’t always come out clearly and he can only string a few together at a time.
But there was one phrase he kept saying to staff and Jeff: “Daddy today.”
The pair eat chicken fingers for lunch and then go to the river museum. Jeff buys Colin a purple necklace and the two run through a large hut in the water room that mimics a beaver dam.
It’s hard to be so far away from Colin, Jeff said later, but he knows Hills and Dales will help him thrive and help him be as independent as possible.
At school, Colin is in a class with only a handful of special-needs students. The kids learn basic skills such as how to catch a bus and how to buy food.
When the Edbergs first took Colin to the facility, Jeff said his heart was breaking. It wasn’t until one day, during a visit that he began to be OK with the decision to have him so far from home.
“We were out to lunch one day and Colin said he wanted to go home,” Jeff recalled. “I asked, ‘Where’s home?’ Colin said, ‘Hills.’ He feels safe here, he’s taken care of and he sleeps well.”
Back at Hills and Dales, the two walked up the path to Colin’s bedroom — Colin’s arm linked through Jeff’s to provide support. They both knew the day was coming to an end and they’d soon have to say goodbye.
“Daddy’s happy today,” Jeff told his son.