Child Watch® Column: "Twinkle and Ethel: More Parents Struggling to Keep Their Children Healthy"

Release Date: April 6, 2007

Marian Wright Edelman

Our children need you to stand up and demand Congress and President Bush provide all of them health care this year.  Children cannot wait.  There is no excuse for nine million children to be uninsured in the richest nation on earth.  The Children's Defense Fund (CDF) is working tirelessly to share the stories of families across the country who are struggling to find health care coverage and get the right care their children need to stay healthy and thrive.  Here are two mothers' stories.

In Grove City, Ohio, Twinkle faces the tough choice between her pride and what's best for her two children. Sixteen-year-old Kayle, a middle school student with special needs, was born with ataxia, a condition that causes a lack of muscle control.  Kayle's father pays his family's health insurance through his employer but the plan regularly denies Kayle's need for physical, occupational, and speech therapies because she doesn't require them as a result of an injury or accident.  After their divorce last year, Twinkle needed to apply for Medicaid because of reduced income and the ongoing problems with the family's private insurance policy not covering Kayle's complex therapy needs.

The enrollment process turned out to be a struggle for Twinkle who works as an Early Childhood Mental Health Coordinator making $30,000 a year. She said, "One would think that working at Children's Hospital, I could navigate the system. Even with my experience and seeing this every day at work, it still took me three months to figure it out. I imagine that many parents who have no familiarity with the system would get frustrated and give up." But Kayle needed a new wheelchair in addition to therapy, so Twinkle knew giving up wasn't an option for her family.

Like many other parents in "working poor" families, it was difficult for Twinkle to choose to accept the publicly funded Medicaid program assistance. But she felt she really had no alternative, because even though she works full-time, she just can't afford to pay for her family's medical needs.  In addition to Kayle's special needs, Twinkle's 12-year-old son Gavin has ADHD and binocular dysfunction, or acute double vision. Twinkle explains that even though Medicaid will help pay for Kayle because of her disability, she will still have enormous co-pays for Gavin. The family insurance plan would pay for his medication, but not the therapy he needs to cure his vision condition. Again, Twinkle is faced with a difficult decision:  pay $75.00 per 30-minute treatment, or let his condition go untreated.

Meanwhile, in Jackson, Mississippi, Ethel is another single mother trying to cover two children's different needs.  Ethel cares for her two sons, 12-year-old Jeffrey and 3-year-old Vontarius, on little more than $1,000 a month.  Vontarius suffers from severe asthma and is currently covered by the State Children's Health Insurance Program (SCHIP).  Jeffrey, whom she adopted, suffers from major depression and ADHD.  Because he has been labeled disabled, this qualifies him for Medicaid coverage. 

Jeffrey's condition requires that he attend school in a controlled environment where there are doctors and counselors who can work with his aggression and constantly monitor and modify his medication. But Medicaid has proven to be a challenge because it will only cover his treatment in stints of six months or less, so after six months at the facility he must go home for six months before returning to the school for treatment.  In most instances when Jeffrey returns home his medication isn't regulated.  He goes days without sleeping or eating and becomes very angry and aggressive, sometimes strik's ability to hold a steady job because she can't find consistent after-school supervision and her employers are less than sympathetic to her situation.

In a bizarre "Catch-22" twist, Ethel has received a letter informing her that Jeffrey has been cut from Medicaid because he is not a full-time patient at the facility where he receives his schooling and medication—after being told by Medicaid that he can stay there for only six months at a time. CDF is working with Ethel to get Jeffrey reinstated with Medicaid so he can continue his treatment.

Ethel says she has lost all hope in Medicaid and feels the system is broken.  When getting prescriptions filled, she has been told several times that her son is "maxed out," meaning that he has received more than five medications a month. Ethel understands that income may need to play a part in deciding Medicaid coverage but thinks the formulas should be reworked.  She points out that the cost of living is high and people who barely exceed the maximum are shut out from affordable health care, leaving them very few options.

Twinkle and Ethel and their families clearly illustrate the no-win choices so many Americans face.  Why, in our wealthy nation, are there nine million uninsured children and millions more underinsured? We have the power, opportunity, and moral responsibility to demand a change from our elected leaders this year. Learn more about CDF's Healthy Child Campaign at www.childrensdefense.org/healthychild.