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Living Life Limited

My name is Elaine Gartelos and I live in Waterloo, Iowa. I am one of the thousands of people who are trying to muddle through the failing Iowa Medicaid system. I was born with Spinal Muscular Atrophy, a neuromuscular disease that causes muscle weakness, but I've always been a very active and independent person. I have a degree in Radio/Television/Film Production, and was able to work in the field until further health issues stopped me. Then, as much as my health allowed, I was able to work from time to time on some short term projects from home.


For several years, I was able to have enough money saved to pay for home caregivers but, when the money ran out, I needed the support of Medicaid services. When these services were under DHS, I was able to have someone come in the mornings to get me up, get cares and other things done, leave, and have someone else come later to put me in bed at night. It allowed me to be active, have productive days, and live a very normal life.


After Medicaid became privatized, things changed drastically. My caregivers weren’t getting paid on time; sometimes it took months. I had one caregiver that was told to resubmit one month’s claim form five times! Eventually, she could no longer live with the uncertainty of whether or not she would receive a paycheck, besides having the need to make more money in order to survive. After five years of being a loyal and compassionate caregiver, she had to leave to get a higher paying job, where she could also get paid on time. And, though, I hated to see her go, I couldn’t blame her.


I’ve had three other caregivers leave me for the same reasons. I had an agency coming to try to cover their absences, but the agencies that provide CDAC services charge much more than what Individual CDAC workers are allowed. This cut my personal care hours in half.


Right now, I have an agency that is allowed to have their workers spend only up to three hours per day with me, and only 20 days per month. I had a previous agency that didn’t even have the staff to send me half of the days they were scheduled. On four occasions within six weeks, I did not have anyone to re-position me in bed for 35 to 45 hours. I already have two pressure sores and I cannot afford to get anymore.


When I asked my case manager about the possibility of getting an Exception to Policy to allow more time and funds for caregivers. She told me that never happens any more. Then, I discovered that, yes, they are supposed to allow for Exceptions to Policy! I believe that the insurance companies just don’t want to spend the extra money that would allow a disabled person to lead an active and productive life.


It’s not only the Individual CDAC workers that are not getting paid. My Durable Medical Equipment (DME) provider is no longer taking any more jobs because the MCOs are not paying them, there are homecare agencies unable to keep staff and even closing their doors, and my dentist does not take anymore Medicaid patients. Home nursing agencies are also having horrible problems dealing with the MCOs. These aren’t isolated incidents! It’s been happening all over the state since MCOs have been managing Medicaid services in Iowa.


I feel that our governor is lying to us when she tells us that Medicaid is running smoothly. For-profit insurance companies are now dictating what services we are allowed and how much the providers of the services should be paid (or not paid). Shouldn’t decisions like that be made by knowledgeable health care professionals who know the needs of their own patients?


I am currently taking online classes to further my career in the hopes of being able to start doing part-time work again. I’m doing all of my coursework lying down because caregivers aren’t being paid enough to come back at night to put me in bed. Since I’m now only able to be up a few hours, I have to take advantage of the time I can get. When my classes finish and I’m ready to start working again, if I am still lying down this much, I may not be able to work at all!


I, along with many others, rely on Long Term Support Services (LTSS) to survive and live the best life I can. When I found out that a large portion of the recent raise the State gave to the MCOs was earmarked for nursing homes, I wondered why it isn’t being used to fund Home and Community Based Services (HCBS) and LTSS. These are services that help the disabled and elderly live and thrive in their homes and be viable members of their communities, rather than merely existing in nursing homes.




#UpgradeMedicaid #CripTheVote #LivingLifeLimited

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