"It's been so hard to make children visible," said Marian Wright Edelman. The smallest citizens have trouble making their voices heard, so Edelman -- and the Children's Defense Fund,
which she founded in 1973 -- speak up for them, their rights and policies that she feels would protect them.
Edelman is raising that voice in favor of a change to the health care reform bill being considered in the Senate. And she's finding it difficult to rise above the din of debates over a list of other disagreements -- from payments for abortions to the question of coverage for immigrants
. "The public option has sucked up much of the oxygen," she said, but that "will not solve the problems of children."
As a supporter of reform, "I'm very torn," Edelman said during a conference call this week. She approves of provisions in the bill to, for example, cover those with pre-existing conditions. But "I will have a big problem if millions of children end up worse off."
Her issue is the future of the Children's Health Insurance Program (CHIP), enacted with bipartisan support in 1997. It provides coverage to children whose families make too much to qualify for Medicaid but too little to afford private insurance. Early this year President Obama signed
legislation to expand the program after it had been vetoed twice by former President Bush.
Edelman said she's worried the reform bill, as it came out of the House, could phase CHIP out in December 2013. CHIP children in families with incomes above 150 percent of the federal poverty level ($33,075 for a family of four) would transition to an exchange program.
Proponents defend this approach, since an exchange would allow entire families to receive coverage. They also believe that funding would be more stable than in CHIP, which Congress would have to reauthorize.
"The bottom line now is we have a House bill that abolished CHIP just a few months after it was signed," Edelman said. "Parents will have to pay more for less."
"The House did expand Medicaid," she said, and "we do applaud that." But Edelman would like a chance to see what this new exchange would look like. "Why take a child out of a program that we know will work?"
She has found an ally in Sen. Bob Casey (D-Pa.), a member of the Health, Education, Labor and Pensions Committee, who this week introduced an amendment
that would, in part, continue full funding for (CHIP) through 2019.
In October, Sen. Jay Rockefeller (D-W.Va.) led an effort in the Senate Finance Committee to preserve CHIP in the health-care reform bill.
"We have had some victories in the effort to prevent the dismantling of CHIP, but there is more work to do in order to preserve and improve health care coverage for children," Casey said in a statement. "The benefits of health care for children, particularly low-income children and children with special needs, are beyond dispute. Such care will not only help kids developmentally, do better in school and put them on a healthy path in life; it will also reduce long-term health care costs."
Casey's amendment would:
• Require a report in 2016 to compare coverage and benefits for low-income children under CHIP to the health care exchange created in the reform bill;
• Increase federal matching funding for states that implement best practices for enrolling children;
• Protect children and families by ensuring, through 2013, that states may not reduce eligibility levels in place on Oct. 1, 2009; it will also require, beginning in 2014, that all states must cover children in families up to 250 percent of poverty;
• Streamline and simplify the CHIP application process to ensure families know about and can take advantage of coverage;
• Continue $50 million annual enrollment grants through 2019 to improve outreach to families about CHIP services and to enroll children;
• Prevent eligibility errors by improving the eligibility screening process;
• Mandate that any savings be shared 50/50 between deficit reduction and a new fund for vulnerable children and families.
As someone who qualifies for Medicare, Edelman is part of a group that's been the center of the government's attention. She would like to see some of that spotlight diverted. "My grandchildren are more important than I am," she said. "Our goal has been to move toward a Medicare-type system for children."
In any health coverage for children, she said, it's important to simplify the bureaucracy, building on best practices to make it easier for the eligible to receive benefits. And mental health services are essential, she said, citing as just one example the children scarred by Hurricane Katrina.
Statistics show black children disproportionately affected by the gap in health coverage, with black children in working families almost one-third less likely to have private health coverage than white children in working families and black infants more than twice as likely as white infants to die before their first birthday. "It's white children, poor children. It's all children," Edelman said.
She said Children's Defense Fund polling shows that the public believes children should be first. So she's making a case
, lining up the support of civil rights groups. Edelman would like the Casey amendment to get a hearing before Christmas, before children's health-care coverage is lost amid higher-profile issues.
"We're working very hard to get every senator to support it."