Our experiences with Medicaid privatization in Iowa

I adopted Colin and brought him home when he was one-day old. My wife and I were filled with joy as only new parents can be. It soon became clear that our perfect baby had severe difficulties. He had Microcephaly, Cerebral Palsy, Hypertonia and was almost blind. We were committed to him and started to find help, as his condition was way over our heads! We found Medicaid provided services in order to give him the help we were unable to give, and that would help him have a happy, productive life.

I also adopted my second son and found that he also had a medical condition that we had not known about. No one did. These boys are darling boys with their own talents and difficulties. Colin's smile will light up any room, and he never, never feels sorry for himself. He was the boy that was to never, see, walk nor talk. He does all three.

My two special needs children now face a new challenge: the privatization of Medicaid services.

The changeover in Iowa from the reliable and efficient Medicaid system that dispenses $4,200,000,000 (That's billion) dollars of needed medication and services to the elderly, sick and disabled community of 560,000 people in Iowa has gone from really bad to unworkable. I'm not a political person, and I'm certainly not taking an academic view of this situation. This issue is very personal to me as two of my three children are recipients of medical services they clearly need and that I cannot otherwise provide them. The State of Iowa is treating this like a game, or a political contest to be won or lost. I have two beautiful boys, 11 and 13 that are affected by the outcome of this issue and the results may continue to give them a good life, or become life changing, if not threatening for them.

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Here's what I see. Our society has decided to take care of the less fortunate than us, the sick and the disabled. This is not because of who they are, but because of who we are and how we want to see ourselves. Medicaid in Iowa has been funded by 45 percent State funds and 55 percent Federal funds to accomplish this task. In the 13 years I have been personally involved in this system, I have found Medicaid and the Iowa Department of Human Services workers who administer its funds and services to be dedicated, caring, competent and, yes, overworked. The overhead that administration has cost is 4 percent of the fund. Now, 4 percent of the $4.2 billion is a lot of money, but just wait. It gets a lot better.

The new system will be administered by four (now three) for-profit Managed Care Organizations that will be allowed 15 percent for overhead and profit. My radar goes up when this much money is involved, when it is being rushed to completion, when one of the four MCOs is removed by an Iowa judge after being involved in fraud and misrepresentation, and when providers and recipients cannot get answers to basic questions like how much they will be paid and how the system will work. Why is the Iowa administration (governor's office) claiming that $51 million will be saved when this system will cost $462 million more in direct fees to the MCOs than what currently goes to administrative costs? I'm a real estate broker, not a math teacher, but if we don't get more state or federal money, and the system costs $462 million more than the one we have that works, the only way to do that is to cut services. That means that my sons will pay the bill in reduced services so we can privatize a system that already works very well. Why are we doing this? Certainly not to save $51 million. As the numbers indicate, it will cost money, not save money, if needed services are not cut.

The governor was fighting tooth and nail to implement this system by January first, and even the Federal Heath and Human Services Administration acknowledged it was unworkable and mandated a 60-day delay to sort out the details, including the fact that not enough people or providers have signed up for it. So now we are caught in the middle of a changeover that may or may not happen, and the health and well-being of our children are caught in the middle of this political battle.

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I have called Iowa Medicaid Enterprises twice and was promised both times that they would not throw my 13-year-old son out of the facility he lives in when the changeover time is up. My response was relief. All I asked was that they simply write that down, because all the reams of literature I have been provided with and have reviewed have never said that. I asked that they write me an email or letter simply stating that my son's services would not be cut or eliminated, because he would not survive without constant care. They both said they could not write it down. I would have to trust them, and they would have a supervisor call who had the authority to write this letter. Neither the letter, or the call from the supervisor ever came.

So, I found out who the main providers are for my children, whom they have selected as MCOs, and I picked those MCOs for my children all before the deadline of Dec. 17. Here is where the system really starts to break down from the perspective of the recipients of Medicaid services. I found that one of the providers would approve a medication used by my youngest son. His prescribing doctor and his entire history of medical care has been associated with the University of Iowa Hospital in Iowa City. UIHC has not selected the MCO that will provide this medication. So, I cannot continue my son's medical care there because of procedure - not because of any medical consideration.

The medical situation is even more difficult for my other son. He is medically fragile and lives in a wonderful home called an Intermediate Care Facility for Intellectual Disability, or ICF/ID. His ICF/ID has signed contracts with all four (now three) MCOs. None of these MCOs have given my care provider any indication regarding how they will be reimbursing my son's care, so I don't have any idea which one to select. Keep in mind that these funds are a benefit due to my son's medical condition, not a contract between two business people trying to make a profit. This is his money they are dealing with and so far, no MCO has indicated what they will be giving this boy so he can live in a caring, medical environment.

I'm fully engaged in this process because my son's well-being is involved and is at risk, but I keep wondering why we're doing this in the first place. The former system was working very well and was very efficient. It was reliable and with one payer, it was not confusing. The doctors were caregivers and the disabled, elderly and needy were the patients. The governor says the shift will yield some mysterious $51 million in savings, but no one has been able to identify the origin of these savings for me.

I don't know what the future will be regarding this system, but I do know that some very motivated people will be making $462 million each and every year, and my two sons' medical futures are at best unsure, and very much at risk. Any 'savings” will be paid for by Iowa's Medicaid recipients because they are a population who often cannot even speak for themselves and are an easy target. I do know that with every passing day, this system is becoming more confusing. It seems to be falling apart from the inside. It will provide less care to those Iowans who need it most, and there continue to be fewer and fewer answers regarding coverage, care and procedure. Also, I cannot think of one reason that we are attempting to change a system that already works, aside from the $462 million reasons that the MCOs have to bring this managed care to Iowa.

Wouldn't it be easier and better for Iowans if we quit while we are ahead, and keep the system that we have? I know it would be better for me and my family.

' Jeff Edberg is an Iowa City native and works as a real estate broker in Iowa City. He and his wife Carol are adoptive parents committed to their kids happiness and wellbeing. Comments: jeff@icrealestate.com