116 3rd St SE
Cedar Rapids, Iowa 52401
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.
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.
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.