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Family Stories

The cost of being uninsured—or underinsured—is high for children, their parents, people with disabilities and seniors. In this section, individuals share their experiences and the daily challenges that they face in securing
and retaining good health coverage.

The Demkos and Novaks: What an Eligibility Expansion Could Mean in Ohio Margaret Demko, the mother of three-year-old Emily, testified before the Ohio Finance Committee on February 27, 2008, on how waiting for health care coverage has impacted Emily and her future. Emily was born with Down Syndrome. After receiving Emily’s diagnosis, the family decided that it was important for Margaret to stay home in order to best meet the needs of their child. They explored numerous options after losing their employer-sponsored coverage, but due to Emily’s pre-existing condition, the Demkos were denied private coverage. Luckily, they qualified for Medicaid. However, by their 6-month reauthorization meeting, the monthly family income was $135 over the allowable limits.
The medical bills, in excess of $3,500 a month, were devastating, forcing the family to make difficult decisions regarding therapy. Emily’s medical condition requires orthotic shoe inserts, physical therapy, and corrective eye treatments, as well as hearing and blood tests. The Demkos cannot afford to incur all the expenses at once. The family income, between 250 percent and 300 percent of the federal poverty level, would make them eligible for Medicaid under the expansion enacted in Ohio in 2007. However, the August 17th Directive has put that expansion, and Emily’s access to care, in jeopardy. Read Margaret's testimony.
Like Emily Demko, Seth Novak was born with Down Syndrome. His mother, Paula, also made the decision to leave the workforce to care for Seth and her other two children, Cole and Avery. Just as in Emily’s case, Medicaid covered Seth’s care for a time, but the family eventually became ineligible. Paula and her husband Jeff contacted numerous insurance companies and agents but were unable to find coverage for their children that was even remotely affordable.
Seth went without important medical care, including cardiology follow-ups to his open-heart surgery; appointments for eye-exams; thyroid exams; ENT visits to replace tubes in his ears; genetic doctor appointments to track his growth and development; fittings for his orthotics; and visits to his speech therapist since Seth remains non-verbal. Paula Novak took her family’s story to Washington, DC, to the U.S. Senate’s Finance Subcommittee on Health Care. She testified on April 9, 2008, on the effects of CMS’s denial of Ohio’s plan to cover children in families up to 300 percent of the federal poverty level. Read Paula’s testimony.
Kitty Burgett: Support in Tough Times Ohio On July 31, 2007, Kitty Burgett traveled to Washington, D.C., to share with lawmakers how State Children’s Health Insurance Program (SCHIP) coverage gave her daughter the health care she needed to cope with her mental illness. Working for a small non-profit, Burgett was not provided with health insurance through her employer. As a widow, she was unable to afford to purchase private coverage for her family in the individual market. After SCHIP was created in 1997, Burgett was able to enroll her children in Ohio’s SCHIP plan—known as Healthy Start. This SCHIP coverage became critically important when Burgett’s then-15-year-old daughter was diagnosed with a mental illness. “The bottom line, however, is that without Healthy Start, which included complete coverage for mental health, I never would have been able to afford any of her treatment,” Burgett told a Capitol Hill audience. Today, Burgett’s daughter, now 22, is married and has a daughter of her own and works as a restaurant manager.
Ohio Sen. Sherrod Brown (D) and Michigan Sen. Debbie Stabenow (D) were so struck by how SCHIP benefited the Burgett family that they mentioned the Burgett family’s SCHIP experience during speeches on the Senate floor. Read Kitty's testimony.

Kevin H.: Breathing Easier Ohio Renee H.F. is the mother of three children, the youngest of whom is 12-year-old Kevin H. Kevin has suffered from severe allergic asthma for most of his life. His family lives in Columbus, Ohio, where Kevin attends school and (now) plays basketball. Kevin is covered both by Renee’s job-based insurance and by Medicaid. “Kevin has had allergic asthma since he was four years old. His asthma is triggered by so many things – ragweed, dust mites, trees, leaves, pollen, cats, dogs, feathers, and many foods. We did everything we could to limit his exposure to irritants that could trigger an attack, but no matter what we did, his asthma kept getting worse. At times his lung capacity was only 60 percent or the equivalent of breathing through only one nostril. He was thin and so weak – he would try to ride his bike to the park across the street but needed help coming home, from just across the street. Until recently, he missed an average of 70 days of school each year.”

Ultimately, for Kevin, a new treatment made the difference. In 2004, Kevin’s pulmonologist prescribed a new therapy that would treat an underlying cause of Kevin’s asthma. Medicaid covered Kevin’s breakthrough treatment; he received injections twice a month. It has literally given Kevin back his life. His lung function is now 98 percent. Last spring, Kevin did not miss a day of school, his weight is up to 125 pounds, and now he can ride his bike and play with friends just like other boys his age. His dreams of becoming a doctor, an expert on weather – and a basketball player – are suddenly within his reach.

John and Carrie A.: Covering A Family Maine John and Carrie A. and their four children live in a mobile home in a small town in Maine. John is a full-time firefighter for the town, and in the winter he picks up extra work delivering oil. Carrie works part time, working around John’s hours so that the family does not have to pay for child care. Their income hovers around 150% of the poverty line. They live very modestly, have school expenses (their oldest child is taking some college courses), and their “new” car is 9 years old. They cannot afford the $60/week it would cost to be covered through John’s job.

The children are covered through MaineCare (Maine’s Medicaid program) and the parents sometimes are covered as well, depending on the ups and downs of their part time work. The children are generally healthy, but John has blood pressure and cholesterol problems; he takes 4 prescriptions to keep these conditions under control.

Victor G.: The Need for Preventive and On-going Care California Victor is 14 years old and lives with his parents and 8-year old sister. Both children are insured through Medicaid (called Medi-Cal in California). The family’s income is from earnings, but their total income is just above the poverty line. Victor has had a kidney problem that required surgery a few years ago; he is now in stable condition but still needs treatment. His sister is in good health and receives preventive care, immunizations and other regular physician care through Medicaid. Without Medi-Cal, both children would be uninsured.

J.H.: Treating Chronic Conditions Delaware J.H. is a 6-year old girl with severe asthma and bronchomylasia. A respiratory tract infection (“RSV”) has caused scarring and irritation in her lungs, exacerbating her asthma. As a toddler, she nearly died from asthma; she been hospitalized on several occasions including PICU/intensive care during infancy. She regularly takes 4 prescriptions in addition to frequent antibiotics for ear infections. J.H.’s mother works from home so that she can care for JH and her other child. Her earnings are low and her work offers no health insurance. The extensive care her daughter needs is covered through Medicaid.