The Children’s Defense Fund (CDF) is fighting to make health coverage for all children a reality in America in 2007. Chronic budget shortfalls, often confusing enrollment processes, and dramatic variation in eligibility and coverage from state to state prevent millions of children currently eligible for Medicaid and for the State Children’s Health Insurance Program (SCHIP) from living healthy and realizing their full potential in school and life. As Congress prepares to consider renewal of funding for SCHIP in 2007, CDF believes there is a special opportunity and responsibility for our nation and leaders in all parties to take the next logical, incremental, smart and just steps to ensure health and mental health coverage for all children and pregnant women in America as a significant down payment on health coverage for all.
What our leaders do this year will likely determine child health policy for the next five years. We must not let the more than nine million uninsured children including Katrina’s children be left behind. We must give them health and mental health coverage now.
How do families who need health coverage for their children cope now? CDF has talked to families across the country about their struggles, including a Columbus, Ohio family who’s been forced to fight the health care bureaucracy and their toddler’s childhood cancer at the same time.
Mark was diagnosed with malignant Wilms tumors in his kidneys when he was just 11 months old. Fortunately, he and his older brother were covered by SCHIP when his condition was originally diagnosed. But it was the beginning of a long and difficult journey for his single mother, Deanna, who was forced to quit her job to take care of Mark full-time. In October 2006, Deanna 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. Because his appetite is very poor, he needs Suplena, a special 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 paperwork to be processed. In the meantime, she has to pay out of pocket for the expensive 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. Not only is Suplena expensive, but it‘s difficult to get the supplements. Medicaid has its own vendor and isn‘t 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. After many conversations and getting bumped from one agency to another, Deanna is hopeful the issue will be resolved soon.
Mark became cancer-free when they removed his second kidney in November 2006, and will be eligible for a donated kidney once he has been cancer-free for a year. It has been one uphill battle after another for this mother and her son, but they continue to struggle through the system and the illness. But wouldn’t it be better if the family could devote all its energy to fighting his cancer, instead of spending so much of it fighting their paperwork? If you believe our nation can do better for children, then you need to tell your elected officials that we and they must do better and make health coverage for all children with a streamlined enrollment process a reality this year. Mark and thousands of children like him need and deserve your voice. And any political leader who says they can’t find the time or the money to help the millions of Marks who are uninsured this year should not get your vote next year.