This chain of reactions is similar to what I experienced last week when I heard about the decision by the White House and congressional negotiators to take $3.5 billion out of funding that had been aside to reward states for covering uninsured low-income children. They did it as part of the deal to keep the federal government open through September 30, 2010. At first I was panicked — what on God’s earth did they just do? Then, after I was able to untangle what happened, I was deeply relieved — no kids will be hurt because there is still enough money left in the child health performance fund to support coverage of children. But, ultimately, I was not pleased.

Here is a quick primer on the child health performance bonus fund. It was set up in February of 2009 when President Obama signed the Children’s Health Insurance Program Reauthorization Act (CHIPRA) into law. The money is used to financially reward states that succeed in significantly increasing the enrollment of uninsured children into Medicaid. Right now, despite the high unemployment rate, loss of job-based health insurance, and growth in the number of uninsured adults, we’ve managed to drive the uninsured rate of children down to the lowest level on record. The bonuses have contributed by providing recognition and some modest financial help to states that are moving ahead to cover kids despite often-serious budget problems. This past year, 15 states were awarded a total of $206 million in performance bonuses, more than double the total award of $75 million in 2009.

The decision to tap $3.5 billion of the performance bonus fund was not a disaster in this instance, but only because there is enough money remaining in the performance bonus pool. By our calculations at Georgetown University’s Center for Children and Families, all states could earn bonus payments in the years ahead and there would still be enough money in the fund to reward them. (For the budget gurus out there, the fact that enough money remains to reward all states is why the Congressional Budget Office does not treat the “grab” of the $3.5 billion as a real cut in federal spending, but that is a story for another day). Still, this does not make it a good idea to treat money that has been set aside for children’s coverage as a bargaining chip in budget negotiations. It is a troubling precedent that could work out much worse in the next round of negotiations. As Bruce Lesley, President of First Focus has argued, the money should be protected and used for its intended purpose of strengthening child health coverage.

As I said to my son Leo after we made it safely home and I had calmed down, it may have worked out fine for you this time, but it was still a really risky decision and I don’t want to see it happen again. If only members of Congress and leaders in the administration were as likely to be persuaded by my “tough mom” voice as my eight-year-old son.

Cross posted with author permission from the Huffington Post

We would like to introduce you to a couple of the moms that we talked to when putting together this new brief:

First, we head to Oregon to meet Cynthia Johnson who we met through our friends at Moms Rising  Her story underscores the important role that Medicaid and CHIP play in covering children – especially during turbulent economic times. Cynthia’s husband was laid off from his IT job when she was seven months pregnant, but she was able to enroll her newborn son in CHIP. When her husband secured a job a few years later, the minimal employer plan capped the amount of expenses it would cover at $600 per patient and did not cover her son’s speech therapy, occupational therapy, and other services essential to his development. When her son was seven years old, Cynthia heard that Oregon’s CHIP program had expanded so she re-applied and her son was enrolled. Now he has high-quality, affordable health care coverage that allows him to resume the speech therapy and OT he needs. ”We are grateful that the CHIP reauthorization and the Affordable Care Act were passed so that our son can once again resume his necessary therapies which we were unable to obtain for him for the last couple of years while he was on our inadequate private health insurance plan.” said Cynthia.

Next, we head to Illinois to meet a member of the Family Voices network, Angela Chicoine, who lost her husband a couple of years ago. While helping her three children cope with the loss, Angela also had to figure out how to make ends meet and how to continue to meet their health care needs. When her twins were born, one of them, Emily, stopped breathing and is now a quadriplegic and has been diagnosed with a seizure condition, cerebral palsy, and other disorders. Emily is only ten years old and has already hit a lifetime cap on one health insurance policy. While Angela is searching for affordable health insurance for her family, she can now rest easier knowing that in the future, Emily’s care will no longer be subject to a lifetime cap.

As some Members of Congress celebrate and others try to re-debate the Affordable Care Act, it’s moms like Angela and Cynthia that keep me working hard to make sure we do right by our kids and don’t turn back the clock on the progress we’ve made.

Please read the full report on our website and more stories from our friends at Family Voices, California’s 100% Campaign and Mom’s Rising.  Special thanks to Donna Norton at Mom’s Rising, Kristen Thompson, Suzie Shupe and Michael Odeh with the 100% Campaign and Brooke Lehmann at Family Voices for putting us in touch with the families whose stories are told in the report.

Cross posted with author’s permission from the CCF Blog of Georgetown University.

Personally, I wouldn’t blame Punxsutawney Phil if he decides to stay in his warm cozy hole this year. But that’s not an option for the rest of us. We need to climb back out of our comfort zones where the Affordable Care Act is the law of the land and the promise is beginning to become a reality for many people. We have to face the cold, harsh reality that there is a vocal group of elected leaders determined to bring the law down no matter what it means for America’s families or our economy.

We need to take a break from our other critical work to continue to educate our elected leaders about the important early gains provided by the Affordable Care Act:

* Children can’t be denied insurance coverage because of a preexisting condition like asthma or cancer.
* Parents can keep college-age children on their parents’ policies until they turn 26.
* Coverage can no longer be canceled when someone in the family gets sick.
* A serious illness like leukemia or ALS won’t bury families in debt because of lifetime limits on payments for care.
* You can’t be charged extra for seeking urgent care at an emergency room that is not in the insurance company’s provider network.
* Insurance companies have to spend more of your premiums on care, rather than advertising or CEO salaries.
* Prescription drugs are more affordable for seniors on Medicare.
* Seniors receive free screenings for cancer and other diseases.

Our leaders in Congress should not abandon these critical protections for families in exchange for an empty promise to consider these issues later. America’s children and families have waited too long for Congress to turn the clock back now.

In recognition that millions of our children are heading back to school this week, the event also featured Education Secretary Arne Duncan who tackled the issue from an education perspective.  He argued that some foundational things have to be in place for students to be able to excel. If they can’t see the blackboard, or if they are coping with untreated asthma, it is pretty tough to expect them to do well.  He pledged to work with some of the major school districts in the states that have the furthest to go in covering uninsured children.  (California, Florida, and Texas account for 40% of all uninsured kids, according to powerful new data released today by the Urban Institute.  See my colleague Martha Heberlein’s blog for more on the report).

The star of the morning, though, was probably Bonnie, a mom from Maryland.  ”I speak to you as a mother and as an American,” she began before going on to explain that her husband is an auto-mechanic who doesn’t have any affordable employer-based coverage.   So, when she lost her job, she found her family uninsured.  Luckily, she hooked up with a community-based organization that helped her file an application for child health coverage.  It took only 15 minutes from start to finish, and within 24 hours she got a call that her son qualified.  Since her son has asthma, it was an enormous source of peace of mind in a time of need.  As she concluded, “No mother, no parents should have to choose their mortgage and utilities over health care” for their child.

I left encouraged about the level of commitment shown by two key leaders in the Obama Administration, as well as impressed by the broad array of national organizations they’ve already signed up to work on the Connecting Kids to Coverage Challenge.

Cross posted from the Say Ahhh! blog.

A record number of people are now living in poverty, including one in five children, according to U.S. Census figures (http://ccf.georgetown.edu/index) released last week.  More than 50 million people reported no health insurance coverage in 2009, which translates into an uninsured rate of 16.7 percent.  The Census report underscored the harsh toll the recession has had on America’s children and families.

Poverty and lack of health insurance pose huge risks to child health, development and well-being.  Not only do children need stable health care coverage, they need healthy parents who are able to earn a living wage (http://theccfblog.org/2010/07/many-children-lose-insurance-when-parents-lose-jobs.html).

Children would have fared even worse if it hadn’t been for the stability provided by Medicaid and the Children’s Health Insurance Program (CHIP).  Due to the hard work of many children’s health advocates and government leaders, these lifelines to children remained in tact during turbulent economic times.  Medicaid and CHIP helped prevent more children from suffering the same fate as their parents and other adults in their lives as the uninsured rate among children held steady at 10 percent in 2009.  (That represents 7.5 million uninsured children too many but at least it was not going in the wrong direction.

Building a more stable source of health coverage for their parents and other adults, as envisioned in the full implementation of the Affordable Care Act, will fill a critical gap for struggling families. And with so many families yet to find solid footing in the wake of the economic crisis, it will be crucial to maintain access for children to Medicaid and CHIP in the months ahead.

Today we should be celebrating the first year of the Children’s Health Insurance Reauthorization Act (CHIPRA). CHIPRA renewed the Children’s Health Insurance Program (CHIP) and gave states new tools and fiscal incentives to enroll more uninsured children in CHIP and its larger companion program, Medicaid. Unfortunately, for many of us, it just doesn’t seem right to have a big celebration when there is so much uncertainty over the future of health reform. I confess that I was reluctant to celebrate CHIPRA but, when I thought about how the past year would have been without it, I came to my senses. Without CHIPRA and the temporary increase in federal funding for Medicaid included in the economic stimulus package, the health needs of so many more children would have gone unmet.

In the past year, while private insurance has become less available and more expensive and families faced the most difficult economic times since the Great Depression, the renewed CHIP program and Medicaid have offered a vital lifeline to America’s children. Thanks to the strong resolve of national and state leaders, many of our children have been sheltered from this economic storm.

CHIPRA and the increased funding for Medicaid helped states strengthen and maintain their commitment to children’s health coverage just when they needed it most. While the financial investment was relatively small, it made a huge difference in the lives of the people it helped.  Just ask the Simpson family from Benton Arkansas who were able to maintain CHIP coverage for their children when Mr. Simpson lost his job as an electrician.

This is but one example of the lives touched by the positive actions of national and state leaders to sustain and strengthen children’s coverage over the past year. Families with children who had asthma, diabetes or autism who couldn’t afford private insurance had access to health coverage so they could get their children the treatment and preventive care so crucial to their well-being. Parents who lost their jobs and health insurance were able to turn to CHIP or Medicaid to secure coverage for their children. (It would be better for the entire family if the parents also had access to stable, affordable health coverage that wouldn’t disappear when they lost their jobs but we’ll have to wait for broader health reform to make that improvement to the health care system.)

CHIPRA was not intended to solve all of the gaps in our health care system but was designed as a bridge until our nation’s leaders were able to pass broader health reform. While the timing of health reform is uncertain, one fact remains clear – children and families need access to secure, stable, affordable health coverage that won’t be taken away if they lose a job or become sick.

So what should we give CHIPRA on her first birthday? How about a sibling named Health Reform?

Happy Birthday CHIPRA!

The first time I learned this lesson was when my water broke well before my twin boys were supposed to be born. We couldn’t stop them from coming, and they arrived six weeks early. In retrospect, they were never at serious risk of major complications – our medical system has gotten unbelievably good at helping pre-term babies and six weeks early is considered a modest issue. But, at the time, it was simply awful. One of our sons got out of the NICU after a few days, but his twin brother developed respiratory distress syndrome and was put on oxygen to ease his breathing. There wasn’t a darn thing I could do to speed up the development of his lungs. The only things we could do were hold him, offer love and prayers, and get him excellent medical care.

This episode in our lives is a big part of why as a mom, I am simply unwilling to accept the ominous signs from Congress that this country might yet again throw up its hands and decide it cannot fix our health care system. There are so many things we can’t do for our kids… we can’t stop the bad luck that results in pre-term birth, asthma, autism, or, in rare cases, the heart-rending diagnosis of cancer. We can’t stop the fact that the people in their lives who they love and rely on…parents, teachers, coaches can get sick, be in car accidents and need medical care, leaving us to explain that life is unfair. But, as a country, we can set it up so that if any of those things happen to our kids or to the people in their lives, that at least they have access to affordable insurance. We can make our health care system more compassionate and fair so families have access to coverage that allows them to catch autism, asthma or diabetes earlier and get the help they need.

During the workweek, I spend much of my time analyzing health policy issues at Georgetown University, dissecting the research on trends in children’s coverage, identifying policy options and projecting the impact on children’s coverage. But, in the last week, I feel as though I’ve been spinning my wheels and not getting anywhere as I watched in dismay as Congress and the White House have flirted with the prospect of allowing health reform go down. Or, they might allow it to be so significantly scaled back that it fails at the fundamental goal of providing affordable coverage. As a policy analyst and political junkie, I find this bewildering and not particularly strategic. But, it is mostly as a mom that I’ve been reacting, thinking that we can and must do this for our kids. It has been tough enough to explain the earthquake in Haiti to my twins and their little brother. How can I ever explain to them that we let slip through our fingertips the opportunity to begin to address the entirely fixable disaster in this country that millions of our family members, friends, and neighbors can’t get affordable health insurance?

Author's twin boys who were fortunate to receive good medical care after pre-term delivery.

Children have an enormous amount to gain from successful passage of a strong health reform bill –their health, well-being, and the financial security of their families rest upon it.  Yet, the issue of how children fare in health reform has received little attention.  It could be that people erroneously think we are “done with kids” because of the successful reauthorization of the Children’s Health Insurance Program (CHIP) in February of 2009.  And, it is true that CHIP has been successful.  It, along with its larger companion program, Medicaid, has a proven track record of covering kids. Just last month, the Census Bureau reported that these programs had helped to drive the uninsured rate of children to its lowest level in over twenty years.

CHIP, though, was never designed to cover all children; instead, this relatively modest program was intended to serve as a bridge to broader health reform. Now, Congress can’t figure out whether or not to take the “bridge” down, especially because the coverage on the other side might not be so great. If you watched any of the Senate Finance Committee’s mark up of its health reform bill, it was easy to see the struggle.  The committee had been planning to move millions of kids from Medicaid and CHIP into the new “Exchange” plans.  At the last minute during committee mark up of the bill, Senator Rockefeller stepped in with an amendment that sought to bring a screeching halt to these plans and “saved” CHIP.  (One of his arguments was that families would have to pay much more for Exchange coverage than CHIP, a concern validated yesterday by the Congressional Budget Office).  The glitch is that the Rockefeller amendment didn’t actually fully fund CHIP or re-vamp it for health reform; instead, it kicked these critical questions down the road by calling on Congress to act in the years ahead.

Sound like a mess?  It is and I think we can do better for our kids, especially in the context of a $829 billion bill to fundamentally alter the health care system in this country. Not only can we get rid of the abuses of the insurance industry against fat babies and skinny toddlers, but we also should continue CHIP (with funding) at least until the new Exchange plans are up, running, and clearly able to provide children with comparable coverage. It is quite possible that CHIP could safely be disbanded at that point, but until then, children in working families need a safe, secure home for coverage.  More importantly, no matter what happens to CHIP, millions of our kids are going to be in Exchange plans with their parents.  We know that these children will fare better and their families will have more financial security if the entire family has good coverage. This means strong affordability protections and decent benefits for the many millions of families who will rely on the Exchanges for their coverage.

Kids do have a few things going for them in this debate, including that the public considers it a top priority that health reform provide children with the coverage that they need to grow and thrive.  (There is lots of elaborate polling and focus group research on this point, but it seems to boil down to a pretty basic sentiment of, “They are kids, for God’s sake.”) Plus, MomsRising, an online community committed to creating a more family-friendly world, has just launched a campaign to make it easy for all of us who care about kids in health reform to raise the profile of these issues. They are “pinning” members of Congress with pacifiers to deliver the message that moms, kids and those who care about them won’t be pacified until health reform that works for families is passed.  It is a great chance to speak up for kids and it comes at a critical moment in the health care debate.  If you are a parent, grandparent, aunt, uncle, friend, or simply fan of a kid, now is the time to speak up for them in the health care debate.

Jocelyn Guyer is co-Executive Director of the Center for Children and Families at Georgetown University’s Health Policy Institute and a mom of three young boys.  This blog entry represents the personal views of Jocelyn Guyer and not the views of the Center for Children and Families.