After Medicaid was privatized, I went from a 'normal' life to spending most of the time in bed

An open letter to Iowa Governor Kim Reynolds, Lt. Governor Adam Gregg, Medicaid Director Mike Randall, Iowa Legislators, Managed Care Organizations, and Citizens of Iowa:

My name is Elaine Gartelos. I was born, raised, and have lived in Iowa all my life. I’ve also been disabled all my life, because of a neuromuscular disease. I’ve used a wheelchair since I was a child, and have always been a very active and independent person.

I have lived what some people would call a “normal” life, never letting my disability dictate or limit what I could do, or not do. I’ve achieved a college degree, worked, paid taxes, and contributed to society and to the economy in, what I’d like to think, are positive and productive ways.

Living with a disability is expensive, though. Most of the money I’ve earned throughout my life had to be used for the attendant care, equipment, and medical care that kept me alive and productive. Then, as my disease progressed, I was not able to work so much. Any money I had left at that time was drained quickly, and I found myself needing the assistance of Iowa Medicaid. It helped me tremendously. I was able to receive the care and assistance that I needed to stay in my home and still live independently.

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Then, just a few years ago, things changed. Iowa Medicaid was taken over by private, for-profit insurance companies. My caregivers have difficulties getting paid for their services, sometimes, taking months before receiving their paychecks. Because of the antiquated waiver system, their salaries are embarrassingly low, especially, considering the high level of care they provide. They could make more money working at gas stations, flipping burgers, or cleaning people’s houses. So, understandably, most of my caregivers had to leave me for higher-paying jobs and reliable paychecks.

This has affected me in more ways than you can imagine. Right now, my independence is a thing of the past. I am no longer nearly as active as I used to be. Caregiver hours that I need for my assessed cares have been drastically cut and I must now spend most of my life in bed, sometimes lying in the same position up to 40 hours.

Without the caregiver hours I used to have, it is very difficult for me to work, further my education, enjoy my previous hobbies and creative endeavors, or even engage in my community. Without receiving the cares I need, my health and well-being are deteriorating.

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I am not alone in this. Since the privatization of Iowa Medicaid, this is happening to thousands of disabled Iowans. Iowa Medicaid’s Long Term Support Services program was designed as a lower-cost alternative to nursing homes, by providing care to enable Medicaid members to stay and thrive in our homes and communities.

But, instead, we are being denied these resources.

Many are also being denied coverage of medications they had taken for years that are keeping them alive. Also, Health and Home Care agencies are having difficulties hiring and keeping staff at such low wages, because of Medicaid’s low reimbursements. Medical equipment providers stopped taking Medicaid orders because their reimbursements became lower than their costs. Health care professionals are no longer taking on Medicaid patients for the same reasons.

Governor Reynolds, in spite of what you are telling us, the privatization of Medicaid is not working! Health outcomes are not better, and any money that you tell us that is saved is going into the insurance companies’ coffers! Please realize that this is not a political or partisan issue. It is a moral and ethical issue that is making dollar amounts determine whether your most vulnerable citizens will live or die. Please, help us change this!

Sincerely,

Elaine Gartelos

Proud Team Member of #UpgradeMedicaid

Elaine Gartelos of Waterloo is a writer and disability rights advocate who believes that comprehensive health care for all is a basic human right, and that a dollar amount should not dictate the value of any person’s life.