Margaret Demko has seen firsthand many of the problems with the healthcare system in America, so she is working to change the system.

She and her family have no health insurance, and her daughter faces some significant health issues. The family members have been denied care in the past because they do not have insurance, and they have no way to pay for some of the medical services they need. They are hoping that things will change, though, and Margaret is working diligently to improve the system for everyone who is facing these problems.

Before her daughter was born, Margaret worked in Athens and her husband did construction work. Together, they built up their finances and prepared to start a family.

When their daughter, Emily, was born, though, the family’s financial situation changed completely. Emily, who is 4 ½, has Down Syndrome, a genetic condition that can cause developmental problems and numerous health issues. Margaret planned to go back to work after Emily was born, but found that no daycare providers would care for the infant because of the Down Syndrome.

“No one wanted her,” Margaret said. “My only choice was to quit working.”

She was glad to have the time to spend with her daughter, but it was tough on the family financially to have only one income. Margaret chose to quit her job since her husband made more money in his work, but when she stopped working the family lost all of its health insurance. The family then tried to buy its own insurance, but were denied because of Emily’s Down Syndrome, Margaret said.

In 2005, they decided to apply for Medicaid through Athens County Job and Family Services, and they were accepted. Margaret immediately started her daughter on the recommended therapy programs with Children’s Hospital in Columbus, and the programs helped a great deal in her development. In May of 2007, though, the family had to re-apply for the Medicaid program and this time they were denied.

“We were suddenly uninsured,” Margaret said, explaining that they made $135 per month too much in order to be eligible. She tried to keep going with Emily's therapy programs in Columbus, but soon received bills of $3,500 or more and had to stop. She had no way to pay for the programs that were key for her daughter’s development, she had no way to pay for health insurance for the family and she did not know what to do.

Margaret began looking for help and found the organization, “Voices For Ohio Children,” which is dedicated to pushing for changes in public policy in order to improve the health, safety, education, family stability and childcare for Ohio families. She told representatives from Voices For Ohio Children her story, and then was asked by the organization to tell her story to legislators and government officials in Ohio and Washington, D.C.. She also spoke for Children’s Hospital, and related how the programs there helped her daughter a great deal, and how she needs insurance so she can continue with the programs. By speaking for Children’s Hospital, she was able to receive reduced rates for some programs for Emily, so she was able to continue for a time with the visits for therapy.

Over the last few years, state and federal changes have been made that may allow families at Margaret’s income level to qualify for Medicaid, but nothing has been finalized yet in Ohio and Margaret is hoping that the new state budget will include the changes that will enable her to receive Medicaid insurance for her family. But while changes may be coming, nothing has happened yet and the lack of coverage has hurt the family for several years now.

“Emily is not receiving therapy,” Margaret said.

Living without insurance has been difficult for the family. Margaret and her husband do not go to the doctor for health problems as much as if they had insurance, and they feel they have been treated differently in some health care facilities because of their lack of insurance.

“We don’t seek care unless its absolutely necessary,” Margaret said. Also, they do not visit the for-profit clinics in the area anymore after running into problems because of not having insurance. One big problem is the cost difference between those who have insurance and those who do not, Margaret said.

“It’s a huge difference between insured and uninsured,” she said. Uninsured patients do not have the insurance companies negotiating prices and pushing for costs to be kept lower, so they naturally often have to pay higher prices, Margaret added. The family does visit the Family Healthcare facility in The Plains. The clinic sees Medicaid patients, patients without insurance and patients with insurance. It operates on a sliding fee scale, too, which makes it affordable.

“They don’t look at you differently if you do or don’t have insurance,” Margaret added. She appreciates that the clinic works with its patients financially, and is especially happy with the medical care it provides for her daughter. The family also visits a dental clinic in McArthur that sees patients with no insurance and operates on a sliding fee scale, and Margaret is happy with the care there. O’Bleness Memorial Hospital in Athens has also been excellent in the way it works with patients, Margaret said. It’s great that the hospital allows her to make payments on bills, such as one that she has been paying for more than a year now, but it’s also frustrating to have no insurance and know that you have to keep paying month after month trying to erase the debt.

“I have bills that just linger,” Margaret said. If the state does not change the regulations that would allow Margaret’s family to receive Medicaid or at least buy into the program, then there is little chance the family will be able to receive any insurance or make any changes that can help them financially.

“There really is no hope on the horizon,” she said. Margaret can work part-time now that Emily is in public preschool, but has to have a flexible schedule because her daughter has a weakened immune system and gets sick more often than most children.

“I'm not someone who is not willing to work. It’s just not the right time yet for my family,” Margaret said. “We’re not there yet.” One particularly frustrating part of the current Medicaid situation in Ohio is that families that are at 200 percent of the poverty level or below are eligible to receive Medicaid, and families that are between 300 and 500 percent of the poverty level are eligible to buy-in to the Medicaid program. Margaret's family is in between 200 and 300 percent, and has no way to get Medicaid until the state legislation is changed.

The family makes enough money to pay its non-medical bills, but its budget is very tight. And when you factor in how high the medical costs can be when you have special medical needs and you don’t have any insurance, there is no way the family can pay all of its bills each month. Margaret speaks out about the issue wherever she can because she knows how unfair it is to her family and to countless other families across the state. She is currently working with the Ohio Consumers for Health Coverage in its push for reforming healthcare in Ohio, and she willingly shares her story in order to point out the problems with the current healthcare system.

Margaret is in a nearly impossible situation, and it would be easy for her to be frustrated and upset, and to want to give up. She is taking on the challenge, though, and is working for change because she knows how important it is for her family, and for countless other families in Ohio. She is asking for help from the state, and from all Ohio residents.

“We need people to call their state senators, call their state representatives, call (Ohio Governor) Ted Strickland. Tell them to vote the right way,” Margaret said.