Navigating the Confusing and Cumbersome Enrollment Process
Families With Siblings Ineligible for the Same Programs
Caught Up in Red Tape and Unable to Renew Coverage
Families Having Trouble Finding Doctors Who Accept Medicaid
Families Earning Just Over the Income Eligibility Limit
Families Unaware SCHIP Was Available
Deamonte Driver, died at the age of 12, Prince George's County, Maryland: Deamonte Driver, a seventh grader in Prince George’s County, Maryland, just outside of Washington, D.C., died because he couldn’t find a dentist who would accept Medicaid and his mother couldn’t afford an $80 tooth extraction. The inexcusable loss of this 12-year-old’s life started when he complained of a toothache. His mother, Alyce, who works at low-paying jobs, had been focused on finding a dentist to see Deamonte’s brother, who had six rotting teeth, when Deamonte began complaining of pain.
After an unsuccessful search for a dentist who would accept Medicaid, Alyce took Deamonte to a hospital emergency room where he was given medicine for a headache, sinusitis and dental abscess and then sent home. But his condition soon took a turn for the worse, and he was back at the hospital being rushed to surgery where it was discovered that the bacteria from his abscessed tooth had spread to his brain. Heroic efforts were made to save him, including two operations and eight weeks of additional care and therapy, totaling about $250,000. Unfortunately, it was all too late. He died on February 25. The outrage is that Deamonte’s life could have been saved by a routine dental visit and an inexpensive extraction, if only Medicaid’s reimbursement rates to providers weren’t so low, causing Medicaid providers to be extremely scarce.
Devante, died at the age of 14, Houston, Texas: Devante was a 13-year-old boy with advanced cancer of the kidneys who went without any health coverage for four months while his mother attempted to renew his Medicaid coverage. Although his mother, Tamika, submitted at least three renewal applications beginning in February 2006—one through the financial counselor at Texas Children's Hospital—and called the CHIP/Medicaid hotline dozens of times, there was no record of Devante's case in the system when advocates contacted the call center on his behalf in August 2006. Because of a state staffing shortage, officials say his application went unprocessed. Meanwhile, Devante went without any health insurance and had to depend on clinical trials for care as his tumors continued to grow.
Only through personal intervention and extensive follow-up with the highest levels of the Texas Health and Human Services Commission was his coverage finally reinstated. He then was able to go to the University of Texas M.D. Anderson Cancer Center, where for a while radiation therapy helped take away his pain. After struggling courageously against his cancer, on March 1, 2007, Devante died at the age of 14 from complications of the disease. He will be remembered as a thoughtful young man who was a devoted brother and son, and who never complained about his illness.
Devante's mother tells his story.
Kayle, 16, and Gavin, 12, Grove City, Ohio: Kayle and Gavin's mother, Twinkle, faces the tough choice of choosing between her pride and doing what she knows is best for her children. Her daughter, Kayle, is a middle school student with special needs and her son, Gavin, who has ADHD and binocular dysfunction (acute double vision), is a student in the South Western City School District.
Kayle was born with ataxia, a condition in which damage to the nervous system causes a lack of muscle control. Kayle’s father pays for the family’s health insurance through his employer. However, Kayle’s need for physical, occupational and speech therapies is regularly denied by their health plan because she does not require therapy as a result of an injury or accident. After a divorce last year resulted in reduced income and because of the ongoing problem of the family's private insurance policy not covering the complex needs of Kayle's therapies, Twinkle applied for Medicaid.
After making the difficult decision to apply for Medicaid, the enrollment process was an even greater struggle for this single mother, who works as an Early Childhood Mental Health Coordinator making $30,000 a year. Twinkle 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 Twinkle knew she couldn't give up because, in addition to therapy, Kayle needed a new wheelchair.
Like many other "working poor" families, it was a struggle to choose to accept the publicly funded Medicaid program assistance. But Twinkle felt she really had no alternative, because even though she works full-time, she cannot afford to pay for the family's medical needs. She explained that Medicaid will help pay for Kayle because of her disability, but for Gavin, she still will have enormous co-pays. The family insurance plan would pay for his medication, but not the therapy he needs to cure his binocular dysfunction condition. Again, Twinkle is faced with a difficult decision—pay $75.00 per 30-minute treatment or let his condition go untreated.
Mark, 21 months old, Columbus, Ohio: When he was just 11 months old, Mark was diagnosed with malignant Wilms tumors in his kidneys. Fortunately, he and his older brother were covered by SCHIP when his condition was originally diagnosed. His single mother, Deanna, was forced to quit her job in order to take care of Mark full-time. In October 2006, she discovered that Mark had been eligible for Medicaid since April 2006, so she set out to enroll him in the Medicaid program—a process that turned into a frustrating, time-consuming ordeal. For three weeks, Deanna spent three days a week for four hours at a time at the Department of Jobs and Family Services, bringing her ill child along each time. It then took six months of waiting, but Mark was finally approved for Medicaid. Deanna also learned that Mark qualified for assistance from the Bureau for Children with Medical Handicaps (BCMH), a state-administered program, and for Medicare under their disability coverage.
Although Mark‘s cancer is now in remission, he is in end-stage renal failure after losing both kidneys and is on dialysis for ten hours each day. His appetite is very poor and he needs Suplena, a nutritional shake made for dialysis patients. These shakes are the only nourishment standing between this 21-month-old and a feeding tube. Suplena is covered under Medicaid and BCMH , but Mark’s mother is still waiting for the processing of the paperwork; in the meantime, she must pay out of pocket for the supplements. This is a particular hardship because the family lives on the $627 per month that Mark receives from Supplemental Security Income, a federal program designed to help disabled people. After many conversations and getting bumped from one agency to another, Deanna is hopeful the issue will be resolved soon. Not only is Suplena expensive, but it is difficult to get the supplements. Medicaid has its own vendor and is not a local supplier. A local grocer has begun carrying the supplement, but it is considered a non-food item, so Deanna can’t purchase the shakes with food stamps. Mark will be eligible for a donated kidney once he has been cancer-free for a year; he became cancer-free when they removed his second kidney in November 2006. It is one up-hill battle after another for this mother and her son as they continue to struggle through the system and the illness.
Janneth, 16, Brenda, 13, and Guadalupe, 9, Alameda County, California: Three sisters, who live just outside San Francisco, all have severe medical conditions. Janneth, the oldest, has chronic tonsillitis; Brenda has asthma; and Guadalupe has anemia. None of the girls have health coverage. Over the past year, Janneth has missed several days of school because of the symptoms associated with tonsillitis, including fever, frequent coughing, throat swelling, inability to eat, and weakness. This has resulted in a significant decrease in her grades. An asthmatic, Brenda is unable to participate in moderate and heavy physical activities, including physical education, because she does not have an Albuterol pump which assists in her asthma management. She worries that she may have an asthma attack and need to be rushed to the emergency room. Guadalupe misses occasional school days due to her anemia, which normally is a controllable illness with proper vitamins and medicine. Because her family can not afford the medicine to treat her condition, she suffers from fatigue, loss of appetite and hair loss.
The last time all three sisters had health coverage was approximately one year ago. Their mother, Teresa, says that they lost coverage because the Medicaid office received her reauthorization packet late. Teresa reapplied two more times but the Medicaid office said the second and third reapplication packets arrived late as well. Teresa reports, “That’s all they ever say… ‘Your papers arrived late!’” Frustrated, Teresa went to her social worker at her local health clinic, Clinica de la Raza, for assistance, and sent in a fourth reapplication packet. Teresa also left a voicemail message for her caseworker at the Medicaid office giving them her new telephone number and requesting an update on the status of her children’s health coverage. To date, she still has not received a call back.
Teresa confides that she is especially worried about Janneth and Brenda. Last year, the last time Janneth was seen by her medical provider, she was advised to have her tonsils removed because of her chronic tonsillitis. But because Janneth lost her health coverage, she has not been able to have the operation.
Teresa also worries about how to meet all of her family’s basic needs. Teresa reports she had to leave her employment at a fabric factory to care for her sick daughters. Her husband works; however, he does not earn enough to cover all the family’s expenses and they now have additional debt because of unpaid medical expenses from the past year. Theresa says, “I just don’t know how we are going to pay for rent, utilities, food, and everything else. I’m always stealing from Peter to pay Paul.”
Jeffrey, 12, and Vontarius, 3, Jackson, Mississippi: Ethel is a single mother caring for her two boys on little more than $1,000 a month. Her older son, Jeffrey, whom she adopted, suffers from major depression and ADHD. Because he has been labeled disabled, this qualifies him for Medicaid coverage. Her younger son, Vontarius, suffers from severe asthma and is currently covered by the State Children’s Health Insurance Program (SCHIP).
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. However, Medicaid has proven to be a challenge because it will only cover his treatment in stints of six months or less. After six months at the Mill Creek facility, he must go home for six months before returning to the school for treatment. In most instances when Jeffery returns home, his medication is not regulated. He goes days without sleeping or eating and he becomes very angry and aggressive, sometimes striking both Ethel and her younger son, Vontarius. All these factors have put a great strain on Ethel’s ability to remain gainfully employed as she is unable to find consistent after-school supervision, and her employers are less than sympathetic to her situation.
In a bizarre, “Catch-22” twist, Ethel now has received a letter informing her that Jeffery has been cut from Medicaid because he is not a full-time patient at the Mill Creek facility where he receives his schooling and medication. This is after being told by Medicaid that he can only stay there for six months at a time. CDF is working with Ethel to get Jeffrey reinstated with Medicaid so he can continue his treatment.
Ethel said she has lost all hope in the Medicaid program and feels the system is broken. When getting prescriptions filled, she has been told several times that her son has “maxed out,” meaning that he has received more than five medications per month. Ethel understands that income may need to play a part in deciding Medicaid coverage but thinks the formulas should be reworked. She said that the cost of living is high, and individuals who barely exceed the maximum are shut out from affordable health care leaving them with very few options.
Ana, 9, and Zayra, 7, Alameda County, California: Both Ana and her younger sister, Zayra, are undocumented immigrants and have chronic health conditions. Ana's eczema is so bad that her medical doctor has recommended she consult a specialist. Zayra has juvenile rheumatoid arthritis (JVA). Ana and Zayra have emergency Medicaid but it does not cover appointments with their doctors when their eczema and JVA flare up. Their seven-month-old sister, Jimena, is eligible for full Medicaid benefits because of her young age.
Ana and Zayra's parents are both street fruit vendors, working six days a week and earning $40 per day. However, there are many weeks in the year when their mother, Marisol, must take time off to care for Ana and Zayra. Marisol reports that her boss is relatively supportive of her taking time off to attend to her daughters, but Marisol's concern is that when she does not work, less money comes in. During a good month, Marisol and her husband earn approximately $1,760.
Marisol reports that Ana and Zayra began receiving emergency Medicaid when they were 7 and 5 years old. When Marisol first applied for emergency Medicaid for her two daughters, she was unable to fill out the forms because they were in English. She tried to obtain them in Spanish, but with no luck. A friend who is fluent in Spanish and English assisted Marisol with filling out the initial application, but she needed to redo the application because of incorrect information. Again, the application was rejected. At this point, Marisol turned to a social worker at La Clinica de la Raza for assistance. With the help of the social worker, the third time was a success and the application finally was accepted.
Marisol is grateful for emergency Medicaid in Ana's case because in the last two years alone, she has needed two emergency surgical procedures: one to remove her tonsils and the other to remove her appendix. However, Marisol says she is always in debt because of medical expenses related to Ana's eczema and Zayra's JVA. She recalls that when she inquired about how much a consultation with a skin specialist for Ana's eczema would cost, she was told approximately $600. She said there is no way she could afford that right now. Marisol explains that if her family had low-cost health insurance, they could use their money to pay the rent on time and buy other basic necessities.
When asked what's been most difficult about Ana and Zayra's lack of health coverage, Marisol said, "When they are sick, I can't take them to the doctor. I stay at home with them and hope and pray to God that it passes. But sometimes it doesn't so we have to take them to the doctor, and then I get into more debt but with less money because I missed one day's work."
Clay, 14, and Cody, 13, Galveston, Texas: Concerned about the welfare of their grandsons, Dorothy and her husband, now 67 and 68, adopted their grandsons, Clay and Cody, in 1999. The boys, now 14 and 13, have poly-cystic kidney disease, which they inherited at birth. Clay’s condition is especially serious; at age 14, he weighs only 85 pounds. Neither boy can participate in contact sports, and they must carefully monitor their diet and health as any infection could result in kidney failure.
Until recently, Dorothy could not imagine her grandchildren going without care. But unfortunately, her children were put in harm’s way when they were uninsured for six full months last year while she attempted to renew their SCHIP coverage. Dorothy submitted the renewal paperwork on time and paid the enrollment fee as directed, but she never received any cards in the mail. She kept calling and calling but no cards arrived. A full six months went by, and the children still had not received coverage.
During this time, her grandson broke his arm in two places, and Dorothy and her husband had to pay out of pocket for care. They had to drive to Livingston, 123 miles away, to get care. The hospital put the child’s arm in a splint and sent him home.
Now that the boys are finally covered by SCHIP again, their health is improving, and they have access to critical specialty care. Clay is going to an endocrinologist and is gaining weight. Their grandparents, who are seniors on a fixed income, can rest a little easier. Dorothy said, “It took a lot off our minds when the boys’ coverage was restored. The boys now have pediatricians. It’s a great relief.”
Robert, 10, Lockhart, Texas: Richard fought for a full year to get his grandson’s SCHIP coverage renewed. Because his own son, his grandson’s father, is deaf, he took on what he thought would be a relatively routine task. But it turned into a nightmare of lost information and frequent and conflicting requests for more information. Richard received eighteen letters with incorrect names and case numbers requesting information that he had already provided. He even went to Austin to testify about the difficulties he was having trying to renew his grandson’s health coverage. Only after CDF intervened for him, did he finally receive an approval letter. He calls his SCHIP ordeal, “the worst fight I’ve ever been in.”
Kevin, 12; Monica, 16; Pedro, 18, Austin, Texas: Valencia and her three children, 12-year-old Kevin, 16-year-old Monica and 18-year-old Pedro are still adjusting to life in Texas after relocating because of Hurricane Katrina. As if getting used to a new life in a new city wasn’t enough to deal with, after emergency Medicaid ended for evacuee families, Valencia found it difficult to access health care for the children, and they lost their coverage. It took more than a year for the coverage issues to be resolved.
During the year that the children were uninsured, they were in desperate need of help. Valencia thought that the children were suffering from Post Traumatic Stress Disorder (PTSD), but without insurance she was unable to get them evaluated for counseling or treatment. Her oldest child, Pedro, suffered episodes of depression and dropped out of school because the stress was too much. Sixteen-year-old Monica also went without treatment for her sickle cell anemia. The situation was traumatic for Valencia, who is disabled and provides for her family on a fixed income. Finally, their coverage has been restored, and Valencia is able to get her children much needed health care.
Valencia expresses her frustration and confusion over her inability to access health care for her children.
Cesar, 1 year old, Oakland, California: Little Cesar has asthma but no longer has health coverage. Although he began receiving Medicaid when he was three months old, it has been canceled twice: the first time was when he was five months old; the second time was when he was nine months old.
Cesar experiences the onset of an asthma attack approximately twice a month and needs his Albuterol so they do not develop into full attacks. Teresa R., his mother, is aware of this and goes to her local health clinic for Albuterol despite Cesar’s lack of health coverage. This has resulted in medical expenses that she is unable to pay.
Teresa reports that Cesar’s health coverage was canceled the first time because she was told that she never reapplied. The office said that a Medicaid re-application packet was sent to her home; however, Teresa reports she never received anything in the mail. “I don’t know why I didn’t receive it,” she said. “I haven’t moved since Cesar was born.” She contacted her Medicaid caseworker to confirm her address and request a second re-application packet, which she received, filled out, and sent back immediately. Cesar’s Medicaid was reactivated shortly thereafter. However, when Teresa took her son to the doctor recently, she was told that his Medicaid was inactive and had been since September 2006. When Teresa inquired about what had caused the second cancellation in only four months, she was simply advised to reapply. Teresa states, “The saddest thing is that both times, I never even received a letter stating it was canceled and why.”
Teresa, who is first generation of Mexican decent, currently does not work because she cannot afford child care. Her husband works, but his work is unsteady. When his work is steady, he earns approximately $800/month. Teresa reports that they need all of his income for rent, utilities and food.
Isherion, 12, Rashod, 8, Jackson, Mississippi: Displaced by Hurricane Katrina, Isherion and Rashod’s family left their home in New Orleans and now are living in Jackson, Mississippi. Their single mother, Carissa, is worried about both of the children, who have significant health issues. Isherion has a ventriculoperitoneal shunt placed in her head to relieve intracranial pressure caused by an abnormality called hydrocephalus, a condition she has had since birth. The shunt is surgically inserted into the brain through the skull to drain cerebrospinal fluid from the ventricles of the brain into the abdominal cavity.
Isherion’s brother, Rashod, was diagnosed with a weak muscle in his left eye and was scheduled for Lasik surgery, which was not performed because the family had to leave New Orleans after Katrina devastated their neighborhood.
Before Katrina, Carissa had a full-time job, but since moving to Jackson, she has been unable to find permanent employment. The family is currently on public assistance and living with Carissa’s mother. Isherion was seen by a doctor in October 2005, given a good report, and scheduled for a follow-up visit in October 2006. Under the impression that she had on-going coverage through Medicaid, Carissa took Isherion to her follow-up appointment but was told that this was the last time the doctor could treat her without SCHIP or Medicaid. A local non-profit organization referred Isherion’s mother to the University of Mississippi Children’s Clinic for interim health care for Isherion. Currently, CDF is assisting Carissa with the application process for Medicaid to get the health care coverage her children so urgently require.
Bostic Family - Marihelen, 1; Elizabeth, 5; Michael, 10; Steffie, 17, Dublin, Ohio: The Bostic Family had been on and off Ohio’s Medicaid program for more than six years, ever since the father was in a serious car accident. After breaking his back and permanently damaging his sciatic nerve, Marc Bostic lost his job, and because of his injuries and limited mobility, his employment record has been erratic. Taking care of their four children on a limited income has been difficult for Marc and Patti Bostic, especially when it comes to health care. They were covered by Medicaid, but each time they had to reapply, some bureaucratic snag would interrupt their coverage. And even when the children were covered, the parents often had tremendous difficulty in getting prescriptions for them. Elizabeth, who requires medication for her allergies; Michael, who needs medicine for Attention Deficit Hyperactivity Disorder (ADHD) and Tourette Syndrome; and Steffie, who requires medication to regulate her periods, all have had to go without the prescriptions that could significantly help or alleviate their conditions.
After using up all of their savings, the family was recently forced to sell their home and move in with Patti’s sister. No one in the family has had health insurance since July 2006, so the children haven’t seen a pediatrician for a year. Marc and Patti have had to seek out clinics where the two youngest children can get immunization shots, and without his medication, Michael is acting out in school and having difficulty keeping up with his studies. Marc must pay $150 out-of-pocket each month for his pain medication.
Patti recently started a new job but her company has a six-month probation period, so she won’t be eligible to enroll herself and her children in their insurance plan for another three months. Until then, they will have to remain uninsured and hope that no one gets seriously sick or hurt, because her salary is too high for them to qualify for Medicaid.
Marc Bostic, father of four, tells his story of how difficult it is to get and keep health insurance for his children.
Christina, 15 and Camilla, 12, New York City: Luminita and Sandor live in Manhattan with their two daughters: Christina, 15, and Camilla, 12. Camilla has cystic fibrosis and requires ongoing health care, including daily medications. Her mother, Luminita, works as an office manager and has health insurance through her employer but cannot afford to pay the premiums for the rest of her family. The father, Sandor, works as a taxi driver, and their combined income is $56,000 annually. Their daughters are enrolled in Child Health Plus B, but because the family’s income is just above the eligibility level for subsidized health insurance (currently 250% of the federal poverty level), they must pay a monthly buy-in fee of $150 per child. Although Sandor had colon cancer in the past, he is uninsured because he is ineligible for any public health insurance program, and they cannot afford private health coverage for him.
In 1997 the family moved to Hungary after going there on vacation and discovering they could receive free medical care without any enrollment or approval process. Luminita said that although her daughter, Camilla, is a U.S. citizen, the doctors in Hungary immediately provided her with health care and the medicine she needed. They lived there for four years before returning to the United States. In stark contrast to their experience in Hungary, here their daughters periodically must go without health care because of bureaucratic processing problems that often occur when trying to renew their SCHIP coverage.
Luminita describes how hard it is to tell her children she cannot provide health care for them.
Keyonna, 10, and Tracy, 3, Fayette, Mississippi: Mekeal, a recently divorced mother, said her two children were dropped from SCHIP in January because her salary exceeds the income eligibility level by $2,000. She applied for private coverage through Blue Cross Blue Shield and was approved for her 3-year-old but not for her 10-year-old. She suspects it’s because her daughter suffered from irritable bowel syndrome more than three years ago. When she asked why BCBS refused coverage for her older daughter, they told her it was because of “strict underwriting.” The family has been trying to get by with no health insurance, but Mekeal says the $200 doctor visits when her daughter gets sick are too much for her budget and she will make another attempt to get private insurance.
Jason, 17, Arlington, Texas: Jason had SCHIP health insurance for years, and the coverage was life saving. When he was in a car accident over a year ago, SCHIP covered his treatment and all the medical bills. His family needs SCHIP because they cannot afford private health coverage. The parents work hard, but the father’s employment in pest control is seasonal and provides only about $35,000 annually. Jason’s mother is wheelchair-bound with multiple sclerosis and has significant health care expenses.
When Jason lost SCHIP a year ago, his mother suspected they had been denied because of the 2003 Ford truck the family purchased so that she could transport her wheelchair. Prior to last year, she had never had problems renewing coverage and the family’s income had not change. But the income guidelines had changes. New SCHIP guidelines that took effect in December 2005 do not count children over 18 years of age as family members. Although their full-time student daughter lives at home, she is not counted as part of the family, and, as a result, they are about $50 a month above the income limit for a family of three. So now the entire family is uninsured. This lack of coverage means that when Jason gets sick or hurt, they have to delay paying other bills to pay for medical care. Lack of coverage also has affected Jason’s performance in school. He has been sick quite a bit in the past few years with allergies and has missed many days of school, because his eyes become swollen and he is unable to breathe. School officials had reprimanded the mother about his absences but now realize that Jason has some serious health issues.
Kyle, 9, Missouri City, Texas: When you look at 9-year-old Kyle, you would never know how hard it is sometimes for him to breathe. Kyle has chronic asthma, as well as migraines and attention deficit hyperactivity disorder that require ongoing medical attention. His mother, Lorna, is a small business owner who cannot afford private health insurance. She found out about SCHIP during the free day at the Houston museums and credits the program with improving Kyle’s health and helping him to perform well at school.
Before Kyle enrolled in SCHIP three years ago, he had no pediatrician and often went to the emergency room when his asthma and migraines flared up. Without treatment for his ADHD, he also had difficulty at school. Lorna never would have been able to afford the $770 in medications that Kyle needs each month to keep his ADHD and other health conditions under control. Now with SCHIP coverage, Kyle has been earning A and B grades, making friends, and even attended summer camp for the first time.
Lorna never would have been able to afford the $770 in medications that Kyle takes a month to keep his ADHD and other health conditions under control.
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