Family Stories

By Martha Heberlein

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.


Laura Rodgers: Mitochondrial Disease, Indiana

“Medicaid is really important to me and other kids. My parents have health insurance for our family from their jobs but it is not enough to cover the cost and needs that come with Mitochondrial Disease that my brother and I both have. Without Medicaid, my family would have declared bankruptcy years ago. I wouldn’t have my scooter to get around and I wouldn’t be able to live such a productive, independent life. I have big plans for my future and Medicaid is helping me achieve those dreams.” -Laura, 11 years old

Wooldridge Family: A Mom’s Perspective on Medicaid’s Vital Role


My family consists of a hard working father and mother alongside four beautiful daughters. Macie, the oldest, is a very talented and brilliant child and affected by ADHD. Emma, who fills the next slot, was born with Spina Bifida, and has acquired a host of other issues such as seizures, countless surgeries and therapy sessions. At times her medical and pharmaceutical bills could easily put our family of six on the street had it not been for Medicaid. Thankfully, the younger two (Lexi and Brooke) do not have any special needs other than worrying about their sisters who do.You see, my husband has faithfully worked for the same company for over 11 years. His insurance is astronomical compared to some plans. However, we have the coverage available for us to purchase through his employer. We also take advantage of a Health Savings Account. Let me never fail to say how thankful we are to have Medicaid as a secondary insurance for Emma. I stay home with our children as their primary caregiver and advocate. I cannot imagine going one single moment through Emma’s life without Medicaid as her secondary insurance. It’s hard enough to raise a family in this day and age, but imagine what it’s like to live with children affected by life-long special healthcare needs.We have a fairly normal life, but sometimes healthcare matters make it hectic. As a family, we enjoy going to ball games, camping, playing games, having fun at the park, cooking outdoors, you name it. My children love to sing at church and at the nursing home. They are in 4H, play various sports at our local Boys & Girls club and raise an assortment of animals. We have good years and bad years, though. For example, when Emma was born, she had few complications after the first four months of her life. We didn’t have any major issues until she was three years old. Things calmed down again for a while. Then we had to make 78 trips for healthcare matters in 2009 and 39 in 2010. This year, aside from clinic visits and check-ups, we have only had three hospitalizations and one minor procedure. There is a lot to consider how a family like ours would make it without Medicaid. Medicaid matters because without the TEFRA Medicaid Waiver that we receive for Emma and her special healthcare needs as related to spina bifida and seizure disorder, we would really be stuck in the mud with the cost of healthcare.


Burge Family: Home Based Care is Often the Best, Texas

Losing a job and your family’s only access to affordable health insurance is devastating for anyone but it is even a tougher blow for parents of children with special health care needs. The Burge Family from the Dallas-Ft. Worth area faced just that dilemma. Mary Burge and her husband have one adult child with special health care needs, Tommy, who is fast approaching his 25th birthday. Tommy was born 3 months premature and Mary knew it would be rough from the get go. Tommy was diagnosed with a variety of issues including significant cognitive impairments, visual impairments, cerebral palsy and asthma. Until 2007, the whole family was able to meet its health care needs through private coverage through Tommy’s father’s employer in Michigan. The recession wreaked havoc, particularly in Michigan, and Tommy’s father lost his job and his access to affordable, quality health insurance. The family moved to Texas when Craig found a new job, but it doesn’t provide job-based coverage.The Burge family was able to enroll Tommy in Texas Medicaid because he receives SSI benefits. Like many other states, Texas is transitioning to a managed care model for people with disabilities and there have been some problems that have resulted in Tommy being unable to see a doctor within a reasonable period of time. Mary’s strong advocacy skills have helped her navigate the system and Tommy is now scheduled to see a doctor in the next few weeks. Also, having come from Michigan, a state that has long embraced serving children with special health care needs in the community through Medicaid supports, Mary was surprised to see that families in Texas are still faced with the excruciating decision of whether or not to move their children into an institution to ensure they get the services they need when they would prefer to care for them in their own homes with assistance. Home based care costs a fraction of the cost of institutionalized care and is often the best option for the child and family.


Katelyn: Financial Ruin Without Medicaid, Utah

Monica of Salt Lake City, Utah had a nagging feeling that something was wrong with her infant but her pediatrician kept reassuring her that she was developing fine. Then, at seven months, the diagnosis came– microcephaly and cerebellar hypoplasia. Now, at age five, Katelyn has some delays, doesn’t walk or talk, but she is making progress toward those milestones. Monica had to cut back on work to provide care for Katelyn.
She is fortunate to have private health insurance for herself and her daughter. However, the cost-sharing for the special therapies that Katelyn needs have exceeded her ability to pay and at times she has struggled with hundreds of dollars of unpaid health care bills.Luckily, Monica was able to enroll Katelyn in Medicaid through Utah’s Medically Needy program, because the amount she would be spending for cost-sharing would bring her income below the level to qualify for Medicaid. In addition to help with cost-sharing, Medicaid also fills in where private insurance doesn’t do the job.Without Medicaid as a source of coverage or as a supplement to make coverage more affordable, many families like Monica and Katelyn would face financial ruin.

Tommy: Medicaid is a Lifeline, Florida

Mothers often worry about whether or not their children will successfully make the transition to adulthood but that concern is magnified for parents of children with special health needs. Will they be able to live independently? Will they find work? Will they get adequate health care coverage?Lynn and her 20-year old son, Tommy, live in suburban Florida where she works for Easter Seals assisting other families with children with special health care needs. Tommy was diagnosed with Williams Syndrome. He also has a heart condition and is on the autism spectrum. Lynn was a strong advocate for her son throughout his childhood and he is doing very well today as a result of the services (including applied behavioral analysis, speech, physical and occupational therapies) he was able to get through a Medicaid Home and Community Based Service waiver. He was one of the first in Florida to get on the program. In fact, he is doing so well, Lynn is optimistic about him obtaining employment in their community. Many other children are not as fortunate; there are more than 21,000 children on the waiting list. Florida is now cutting funding for its Medicaid HCBS waiver and Lynn is very concerned about what the cuts will mean for her family.

The amount of support her son receives for personal care has been cut significantly and Lynn is trying to figure out how to fill in the gaps. She’s considering cutting back her hours to spend more time at home helping her son but she can barely make ends meet on her current salary. Home care is physically demanding work and as she gets older, she’s worried that she will be unable to manage. And those aren’t the least of her worries. Medicaid has been a lifeline for her family and now it is in the cross-hairs of state and national budget cutters.

Allison: Patients’ Bill of Rights Could Help, North Dakota

Allison Restemayer of North Dakota was born with a rare genetic disorder. Doctors told her parents that the MPS would result in her being significantly delayed and that she was likely to die by the age of 10. The good news is that Allison has defied those predictions and is now nine years old, attending school and doing mostly age-appropriate work.This only has been possible because years ago – shortly after Allison’s diagnosis at the age of two – a new drug was approved that has helped her tremendously. Since that time, while the Restemayer’s have been hopeful, the family has also constantly been on edge with the fear of losing the health coverage they had through Mr. Restemayer’s job. They were worried they would be unable to find new coverage because of Allison’s pre-existing condition.
The family is facing the prospect that at some point Allison’s care will exceed the $2 million lifetime limit on the family’s insurance plan. To date, Allison has used $1.7 million. Her parents are hopeful that the new “Patients’ Bill of Rights” will provide them with the security of knowing that Allison will be able to stay covered and get the care that she needs to continue moving forward on the path she has been on for the last nine years.

  • Watch a You Tube video with Allison and her sister Ashley talking about her disorder: In Their Words

Simpson Family: ARKids First Helps Family Get Through Tough Times, Arkansas

James and Rachel Simpson of Benton, Arkansas were already having a difficult time making ends meet when James was laid off from his job as an electrician. Fortunately, the couple’s three children (ages 7, 8, and 18) did not lose access to health coverage as they were already covered through ARKids First, Arkansas’ Medicaid/CHIP program.Even when James had a job, the $400 in monthly premiums for employer-sponsored coverage was more than they could afford. “We would have had to decide to either pay the light bill or to eat groceries – or pay the light bill, eat groceries and not pay the rent,”
Rachel said.
ARKids First has provided the parents with the peace of mind that they will not face financial ruin if they seek medical treatment when one of their children is sick or injured. While ARKids First provides an affordable coverage option for the children, and James has been able to temporarily continue his employer coverage under COBRA, the Simpsons have been unable to find an affordable health plan for Rachel.”It’s kind of scary but I’m the parent, so I really don’t worry that much about myself,” said Rachel. “Just so my family’s taken care of.”

Serrano Family: Ready For CHIP Expansion, Colorado

The following e-mail is from Tobias Serrano from Thorton, Colorado. His family is unable to find private coverage for their daughter, Maria as she has a pre-existing condition. They very likely could not afford it even if it were available. Tobias is an auto technician and earns too much for Maria to qualify for Child Health Plan Plus (CHP+), Colorado’s CHIP program. Maria could become one of the thousands of uninsured children in Colorado who will become eligible for CHP+ when the expansion to 250% of the FPL goes into effect.
“Hi, my name is Tobias Serrano. I’m married and have three children. Two are older and have moved out. My youngest daughter Maria is 14. When she was 3, she was diagnosed with an AVM (arteriovenous malformation) in her brain. She went through 23 procedures to correct the problem. Maria is in good health, but I can’t get anyone to insure her because of a pre-existing condition. When we didn’t have much she was covered under Medicaid. But I make too much for Medicaid or CHP+. Yet, I cannot insure Maria. It gets very expensive for check ups, and even more expensive if she gets sick. I’m willing to pay for insurance if only I could!!!”

This video, released by the Kaiser Family Foundation, profiles people in three of the communities hard hit by the recession: St. Petersburg, FL, Beloit, WI, and Long Island, NY. It examines the experiences of families, employers, safety-net providers, and community organizations.


Watch the video On The Edge: Health Care in a Recession


Sarah: CHIPRA Helps Honor Commitment to Uninsured Children through Apple Health for Kids, Washington

Photo: Tegra Stone Neuss
Sarah McIntyre is an 8-year-old girl living in Yakima, Washington who loves school, music and dance. Sarah was born with a hole in her heart and cysts on her lungs and her life depends on consistent, quality healthcare. She got that, thanks to state health coverage until last year, when her parents received small raises that boosted their income just over the income cap for the state’s Apple Health for Kids program.Sarah’s mother, Vicky, didn’t think it was fair that a working family couldn’t find affordable health insurance and didn’t qualify for public coverage. She e-mailed the Governor, called her State Representative, and got involved with efforts spear-headed by the Children’s Alliance of Washington to expand Apple Health for Kids.
Due in part to her work, the state enacted legislation to expand eligibility to 300% of the federal poverty level (FPL). The McIntyres and other families were told they would get coverage for their kids on January 1, 2009. However, the restrictions placed through the August 17th Directive and the lack of permanent funding for the CHIP program temporarily blocked the expanded eligibility from going into effect.Fortunately for Sarah, on February 4th President Obama signed into law the Children’s Health Insurance Program Reauthorization Act (CHIPRA) with a significant increase in federal funds headed to Washington State to support children’s health care coverage. Coverage is now available to all Washington children in families earning up to 300% of the FPL. Watch a video, Apple Health for Kids: A Lifeline for Washington Families, from the Children’s Alliance featuring the McIntyres.

Secrest Family: Economy Hits Family Hard, Virginia

(The Secrest family’s story was recently highlighted by President Obama at the signing of the new CHIP law.)

Gregory Secrest worked for ten years at American of Martinsville, a Virginia-based furniture manufacturer, earning $ 14.67 per hour. On August 29, the plant he worked in was closed and the manufacturing operations were moved overseas. He not only lost his job, he lost his only access to affordable healthcare coverage for himself and his two sons. (His wife and step-daughter receive coverage through a different source).

When I gave the bad news to my family, my 9-year old son handed me his piggybank with $4 inside and said “Daddy, if you need it, you take it,” said Mr. Secrest.The family is struggling to pay the bills and put food on the table; the one bill they simply cannot afford is health insurance. In order to continue the plan offered under COBRA, Mr. Secrest would have to pay about $1,200 per month. He had to tell his sons, Samuel Tyler, 14, and Christopher Blake, 9, that they couldn’t play football or basketball because he couldn’t afford the healthcare costs if they were injured.
Hope came to the Secrest family at a meeting for unemployed workers at the Martinsville courthouse. That is where Mr. Secrest learned about FAMIS, Virginia’s Children’s Health Insurance Program (CHIP). With the help of the Martinsville Henry County Coalition for Health and Wellness, he filled out the application in 15 minutes. His boys have subsequently been approved for coverage. Since FAMIS does not cover adults, Mr. Secrest remains uninsured.(Written November 2008.)For more on the Secrest family and how the downturn in the economy affects health coverage, see:

Demkos & Novaks Family: Eligibility Expansion for Down Syndrome, 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: Support in Tough Times, Ohio

On July 31, 2007, Kitty Burgett traveled to Washington, D.C., to share with lawmakers how Children’s Health Insurance Program (CHIP) 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 CHIP plan known as Healthy Start. This CHIP 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 CHIP benefited the Burgett family that they mentioned the Burgett family’s CHIP 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.