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FAMILIES AND FAITH LEADERS BRING PLIGHT OF WASHINGTON, DC — The Children's Defense Fund this week joined 18 of the nation's leading religious leaders, representing tens of millions, and 10 families from across the country who struggle every day to meet their children's health needs, many with life-threatening illnesses, to urge Congress to enact the All Healthy Children Act (H.R. 1688), introduced this week by Rep. Bobby Scott (D-VA). "The stories we have heard from these families shows us how our health insurance system is failing our children—nine million children have no coverage at all and countless others are underinsured, fall through the cracks, or get mired in bureaucratic red tape," CDF President Marian Wright Edelman said. "As the State Children’s Health Insurance Program (SCHIP) comes up for renewed funding this year, Congress will decide on the life and death chances of millions of our children. The time to act is now. For all of the children who have no voice, it is our moral obligation to unite and be a voice for them. Congress must pass the All Healthy Children Act this year." CDF worked closely with Rep. Scott to develop the All Healthy Children Act (HR. 1688), which would simplify and consolidate children’s health coverage under Medicaid and SCHIP into a single program that guarantees children and pregnant women in all 50 states and the District of Columbia all medically necessary services. For more information on the legislation, visit www.childrensdefense.org/healthychild. On Tuesday, working families from Houston, Austin, New York, Jackson, Miss., and Columbus, Ohio met with some of our country's most prominent faith leaders at a "Children’s Witness" at Shiloh Baptist Church in Washington, DC to discuss their daily struggles. Two of the families have lost a child in the last few weeks because they could not find a doctor to provide the services they desperately needed or were wrongfully denied health coverage. A list of all participants and a summary of the families' stories are attached. On Wednesday, the group visited more than 25 Senators and Representatives, including members of the House and Senate leadership, and attended a reception given in their honor by the Congressional Black Caucus. ### TRUE STORIES OF UNINSURED CHILDREN IN AMERICA Our children are dying because they cannot get the health coverage and medical services they critically need. Devante Johnson. died at the age of 14. Every day mattered for Devante Johnson. The 13-year-old from Houston had advanced cancer of the kidneys and until last year depended on Medicaid to cover the chemotherapy, radiation and constant monitoring he needed to survive. His mother knew she had a chronically ill chld, and so submitted his renewal two months before the deadline. When she did not hear anything back, she submitted two more complete renewal applications one through the financial counselor at Texas Children's Hospital and called and faxed information dozens of times to keep her son covered. But due to the bureaucracy of the renewal process, her paperwork was never processed and her son went without coverage for four full months last year. During this time, he depended on clinical trials for care and his tumors continued to grow. A state representative intervened to restore coverage but it was too late. On March 1, 2007, Devante Johnson died from complications of cancer. He was 14 years old. Deamonte Driver, died at the age of 12. Deamonte Driver, a seventh grader in Prince George's County, Maryland, just outside of Washington, D.C., died because he did not have health insurance to cover an $80 tooth extraction. The inexcusable loss of this 12-year-old's life started when he complained of a toothache. His mother, Alyce Driver, who works at low-paying jobs, did not have employer health insurance and had been focused on finding a dentist not only for Deamonte but for her 10-year-old son as well, who was also having serious dental problems from six rotting teeth. At the same time, Ms. Driver was struggling with getting and maintaining health coverage for her two older sons, whose coverage was constantly being denied or dropped without notice. Ms. Driver 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 additonal care and therapy, totaling over $250,000. Unfortunately, it was all too late. Deamonte Driver died on February 25, 2007. Families lose critically needed health coverage when they move from one state to another even when forced to move by a natural disaster like Hurricane Katrina. The Allen Family Kevin, 12, Monica, 16, Pedro, 18: Katrina Evacuees Valencia Allen 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, Ms. Allen 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. Ms. Allen thought 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 Ms. Allen, who is disabled and provides for her family on a fixed income. Their coverage was eventually restored, and Ms. Allen is able to get her children much needed health care. Families must continually re-apply for health coverage for which they are eligible, causing significant periods of time where children are forced to live without health coverage and services. The Uhr Family Robert, 10 Richard Uhr 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. Mr. Uhr received eighteen letters with incorrect names and case numbers requesting information 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." The Cusic Family Keyonna, 9, and Tracy, 3 Mekeal Cusic, a recently divorced mother, said her two children were dropped from SCHIP in January because her annual salary exceeds the income eligibility level by $2,000. She applied for private coverage through Blue Cross Blue Shield (BCBS) and was approved for her 3-year-old but not for her 9-year-old. She suspects it is because her daughter suffered from irritable bowel syndrome over three years ago. When she asked why BCBS refused coverage for her older daughter, they told her it was because of "strict underwriting." So now the family is trying to get by with no health insurance, praying every day the children do not get sick. The Harvey Family Kyle, 9 Kyle has chronic asthma, migraine headaches and attention-deficit hyperactivity disorder (ADHD), but his mother, who is a small business owner, cannot afford to pay for private health coverage. She learned about SCHIP three years ago and enrolled Kyle, who was eligible. But before SCHIP, Kyle had no pediatrician and had to go to the emergency room when his asthma or migraines got bad. If a child with an asthma attack can see a doctor when the attack is still mild, he or she can be treated for about $100. But if he or she cannot get early treatment and has to go to the emergency room for treatment of full-blown symptoms, the child faces a three-day hospital stay that costs more the $7,300, according to the Harris County Hospital District. The Tecsy Family Christina, 15 and Camilla, 12 Luminita and Sandor Tecsy live in Manhattan with their two daughters: Christina, 15, and Camilla, 12. Camilla has cystic fibrosis and requires ongoing medical care, including daily medications. Mrs. Tecsy 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. Mr. Tecsy works as a taxi driver. 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. In 1997 the family moved to Hungary after discovering they could receive free medical care without any enrollment or approval process. Mrs. Tecsy 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, in the United States, their daughters periodically must go without health care because of administrative processing problems that often occur when trying to renew their SCHIP coverage. Children are not being given access to "all medically necessary services" they must have to grow and thrive. The French Family Kayle, 16, and Gavin, 12 Sixteen-year old Kayle was born with ataxia, a disease that causes damage to the nervous system resulting in lack of muscle control. The family has been covered through her father's health insurance plan at work, but the physical, occupational and speech therapies that Kayle needs were regularly denied by his health plan because she does not require therapy as a result of an injury or accident. Kayle's brother, Gavin, also needs medication and therapy for a problem with acute double vision. After a recent divorce, resulting in reduced income, Kayle’s working mother, Twinkle French, decided she had no choice but to apply for Medicaid to cover many of Kayle's medical expenses not included in her father’s health plan. Ms. French explained that Medicaid will help pay for more of Kayle's expenses because of her disability, but she said for Gavin she still will be responsible for enormous co-pays and other costs. Many children in the same family are not guaranteed the same medical services, forcing many children to go without the care they really need. The Blackmon Family Jeffrey, 12 and Vontirous, 3 Ethel Blackmon is a single mother caring for her two boys, ages 12 and 3. Her older son, Jeffrey, suffers from major depression and Attention Deficit Hyperactivity Disorder (ADHD). Because he has been labeled disabled, he qualified for Medicaid. Her younger son suffers from severe asthma and is covered by 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 his medication, but Medicaid recently cut him from this program. Although Ethel works full-time, she earns only slightly more than $1,000 a month, and Jeffrey’s situation has made it difficult for her to find constant supervision for him so she can continue to go to work. She said that she is working with her SSI caseworker to get his coverage back but admits she has lost all hope in the Medicaid system. Medical providers are far too often unwilling to take “Medicaid children” because reimbursement rates to the providers are so low. The Bostic Family - Marihelen, 1; Elizabeth, 5; Michael, 10; Steffy, 17 Marc and Patti Bostic work hard to take care of their four children on their very limited income. The family had been seeing a physician they trusted and with whom they felt comfortable. But when they showed up one day for an appointment for routine shots for Elizabeth, they were told the doctor no longer provided medical services to those covered by Medicaid. It was explained to them that the reimbursement rates paid to the doctor for his services were meager compared to the rates he received from other insurers and programs. Mr. and Mrs. Bostic also have had tremendous difficulty in getting prescriptions for their children. Elizabeth, who requires medication for her allergies; Michael, who needs medicine for ADHD and Tourette Syndrome; and Steffy, who requires medication to regulate her periods, all have had to go without the prescriptions that could significantly help or mitigate their conditions. This situation causes considerable frustration and stress for the Bostics who want to give their children the medical care they need but are unable to do so because of extremely limited access to qualified physicians who accept Medicaid patients. Katrina's Children: Still Waiting Dr. Persharon M. Dixon Dr. Persharon Dixon, a board-certified pediatrician, sees first-hand every day the devastating effects of Hurricane Katrina on many children. Dr. Dixon is the Medical Director of the Mississippi Gulf Coast Children’s Health Project, a collaborative program of The Children’s Health Fund in New York and the Coastal Family Health Center of Mississippi. Her program is an innovative approach to comprehensive medical care targeted to low-income children. Two provider teams provide medical care and mental health care through two state-of-the-art mobile medical units. The service sites include schools, Head Start programs, housing authorities, churches and FEMA parks in Harrison, Hancock and Jackson Counties. Their mission is to provide primary care to underserved populations that addresses the whole child physically and mentally regardless of their ability to pay. The health needs of these children are enormous but especially striking is the extreme need for mental health care. The concern for Katrina's children is not just the immediate trauma from the storm but that so much of their lives remains disrupted more than a year later. A new CDF Report Katrina's Children: Still Waiting estimates that 189,000 children were dislocated by Katrina; and as many as 100,000 still do not live where they did a year and a half ago. Some children have attended as many as nine schools in the past 18 months. ### March 27-28th Faith Leaders Witness African Methodist Episcopal Church African Methodist Episcopal Zion Church Christian Church (Disciples of Christ) The Islamic Society of North America National Baptist Convention, Inc. National Council of Churches of Christ in the USA Progressive National Baptist Convention, Inc. Samuel DeWitt Proctor Conference State Council of Churches United Church of Christ United Methodist Church
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### The Children's Defense Fund Leave No Child Behind® mission is to ensure every child a Healthy Start, a Head Start, a Fair Start, a Safe Start and a Moral Start in life and successful passage to adulthood with the help of caring families and communities. Children's Defense Fund |
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