June 2009 Archives

Meg Comeau, Project Director for the Catalyst Center, Boston University School of Public Health




As policymakers consider health reform, they will need to consider the needs of families raising children with special health care needs.  These families are not only hit hard in the pocketbook, they face overwhelming bureaucratic obstacles to coverage.  We asked Meg Comeau to address this issue from a policy perspective and from her personal experience raising a daughter with special health care needs.

"Promises are like babies:  easy to make, hard to deliver."  - Author Unknown

In my wallet, I have a small piece of white plastic with my name on it under the logo of a well-known health insurance company.  To me, this insurance card represents a promise, so to speak, that if I need access to the high-tech world of modern-day health care services I can get it.  In their wallets, my husband and daughter each have a similar card with their names on it.  For a small co-pay and with reasonable deductibles, we can see a doctor or get a prescription filled whenever it's necessary.  The promise that we can get what we need is for the most part fulfilled and we know we are very fortunate in this.

But for one of us, that small white card is not enough.  Equally important to us all is the little blue card that also sits in my daughter, Sarah's wallet.  This card displays the logo of the Massachusetts Medicaid program.  Sarah was born with a complex genetic disorder that has seriously impacted her physical, developmental and behavioral health.  She requires many primary and specialty care doctor visits every month, an average of 6 prescription medications per day, habilitative physical, speech, and occupational therapies, medical equipment and supplies such as oxygen and more.  Without the supplemental coverage she receives through Massachusetts Medicaid, the small co-pays and reasonable deductibles our primary insurance requires would have overwhelmed our middle-income family long ago.

As the health reform debate continues to ramp up, questions of what is affordable and how much families should contribute still remain. Perhaps a look at the research could shed some light on the answers.

A recent study in Health Affairs by Tom Selden, Jenny Kenney, and colleagues looks at cost sharing in public plans and the financial burden it can have on low-income families. Even without cost sharing for children's coverage, almost 13% of publicly insured children have a family financial burden of 10% of family income. Charging premiums and co-payments only increases the number of families facing a high burden, and hits lower-income families especially hard.

This raises an important point - when considering what is affordable in terms of cost sharing, the true unit of measure should be the family, as a child does not grow up in a universe of one. A 5% cap on out-of-pocket spending would have a dramatically different impact if all family health expenses were considered.

Additionally, health care spending is concentrated within a subset of the population (e.g., those with chronic conditions), as well as within the year. For example, a child may have his first asthma attack, necessitating a visit to the ER. Follow that up with a trip to his PCP and then a specialist, plus a few prescriptions and out-of-pocket costs can add up quickly!

This study finds that the month with the greatest spending accounted for 43% of all out-of-pocket spending. Even if this spending doesn't amount to 5% of annual income, it can create a huge financial strain on the family and highlights the importance of measuring the burden of spending over shorter time periods. 

Guest Blogger, Cathy Kaufman, Communications and Policy Director at Children First for Oregon



Liz Arjun has blogged about the fact that CHIPRA has encouraged many states to move forward on health coverage for children despite facing difficult budgetary climates.  We have posted guest blogs from children's health coverage experts in Colorado and Kansas, two of the states that have made commitments to cover more kids.  This week we examine another state that is moving forward through the eyes of Cathy Kaufman, an expert on children's issues in Oregon.

While the nation continues to debate how best to tackle health reform, Oregon recently took a critical step forward by passing the most historic health care legislation since the inception of the Oregon Health Plan 15 years ago.

HB 2116, which awaits the Governor's signature, expands coverage to 80,000 children and 35,000 adults using revenue from an increased tax on hospitals and a new tax on insurers.  This expansion, along with a streamlined application, 12-month continuous enrollment for all children, and increased outreach efforts is expected to result in securing coverage for 95% of Oregon's uninsured kids by the end of the 2009-11 biennium. Not only is this great news for Oregon's kids, it's also good for the state economy, as the expansion will help Oregon draw down over a billion dollars in much-needed federal matching funds.

Uninsured children will have access to health coverage through three different avenues. Children in families with incomes below 200% FPL will be able to enroll in the Oregon Health Plan (an expansion of eligibility, up from 185% FPL) with full premium assistance and no co-pays. Children in families between 200 and 300% FPL will be able to purchase a private health plan through an insurance exchange with the help of a sliding scale premium subsidy. Families above 300% FPL can purchase an insurance plan through this exchange but with no subsidy. The plans offered through this exchange must provide affordable cost sharing and an equivalent level of benefits as the state plan. Lastly, families below 300% FPL with access to employer sponsored insurance can choose to get help affording that coverage for their children, with families below 200% receiving full premium assistance.

The expansion bill also continues Oregon's commitment to expanding School Based Health Care centers throughout the state.

Along with health coverage expansion, the Legislature approved the creation of a state agency called the Oregon Health Authority, which will oversee existing state health care programs, establish health industry cost control measures, and improve the delivery of health care to all Oregonians, including the creation of an insurance exchange that will establish a central marketplace for insurance that provides one-stop shopping for individuals and small businesses, including a public health plan option.  You can read more about the Health Authority on the Oregon Health Fund Board's website.

We can't do anything to stop the eight months of cloudy skies and rain we get each year, but Oregon is well on its way to solving the crisis of uninsured children in our state. We've also regained our position as a national leader when it comes to health reform, something that positions us well for broader reforms at the national level.

Health reform didn't go very well this week and everyone already knows it. Since it is well-covered territory, I'll leave the depressing details to others, and stick to what this week's developments mean for children.

Leaving aside for now the just-released and yet-to-be-read 852-page House bill on health reform, the most notable development this week was the bad news delivered by the Congressional Budget Office to the Senate Finance Committee that its proposed reform plan would cost $1.6 trillion over ten years, about $600 billion more than the Finance Committee had wanted.  In response, Chairman Baucus has gone back to the drawing board. According to leaked documents (found here and here), which now are as widespread as bad cookie dough, the Senate Finance Committee is considering retreating from some of its policy options that would have been good news for kids.

The long-awaited (at least by us) fiscal year 2009 "CHIPRA allotments" were released today.  They reveal, in final form, the new federal funding available to each state for its Child Health Insurance Program (CHIP) in fiscal year 2009.  As we anticipated based on earlier projections, each and every state will experience a substantial increase, relative to fiscal year 2008 spending, in the amount of federal CHIP funds available to it.

To provide a bit of an explanation on what CMS did, here's some details on the table:

1.    Column 2 shows the FY 2009 allotment is 110 percent of the highest:

a. FY 2008 CHIP spending, with adjustments for health care inflation and child population growth;
b. FY 2008 CHIP allotment, with the same adjustments; or
c. projected FY 2009 spending as of February 2009.

2.    In column 3, they subtracted any federal funds the state has already received in FY 2009 for its CHIP program. These include the CHIP allotments in the Medicare, Medicaid, and SCHIP Extension Act, any FY 2006 redistributed funds, and any shortfall funds.

3.    Column 4 shows the result of subtracting the amount the state has already received from the FY 2009 allotment, providing the states with how much in federal funds they still have available.

As states consider their options in using the new CHIPRA law to cover more uninsured children, the question of federal funding support should not be an issue. Although many states are facing serious fiscal constraints, a remarkable number are moving ahead with coverage expansions and simplification measures designed to put the new law to work. As today's final allotments indicate, the federal dollars are there for states to capitalize on (and not just in their annual allotments, as CHIPRA also included mechanisms for providing extra funds to states that may need it as they cover more uninsured children). The question is: can it all add up for the states?

Some of you may have been listening to the Senate HELP Committee hearings this week on its health reform proposal, the Affordable Health Choices Act. There was a lot of talking going on, making it hard at times to see "the forest through the trees." But Senator Dodd's opening statement provided some clarity when he reminded us why health reform is so important:

"Imagine two children in Connecticut. One child's parents are lucky enough to have good jobs with adequate health coverage. He gets to see a doctor. The other folks have fallen on tough times, and layoffs have cost the family not just their income, but their insurance. They can't take their child to see a doctor. We cannot accept a health care system in which those children are not both treated with the same care. When a family can't afford to take their child to see a doctor, that is simply wrong - and we have a moral imperative to act."

In our recent report on what children need from health reform, The Last Piece of the Puzzle, we told a similar tale - showing how two families were forced to roll the dice on health care, with very different results:

• Sarah McIntyre is an 8-year-old girl living in Yakima, Washington, born with a hole in her heart and cysts on her lungs, whose life depends on consistent, quality health care. The family could not find affordable health insurance and was struggling to meet their $800 monthly prescription drug bill and other health care costs. Fortunately, Washington recently expanded their Apple Health for Kids program (the State's Medicaid/CHIP) up to 300 percent of the FPL. Sarah's family immediately enrolled her in the program and she is now thriving due to the care she receives.

• Unfortunately, Emily Demko, a 3-year-old girl living in Albany, Ohio, who was born with Down syndrome, is not so fortunate. The family has no health insurance because Emily's mother had to quit her job to care for her, the father is self-employed, and they can't get
  private coverage because of Emily's pre-existing condition. While Medicaid/CHIP would seem the perfect solution, Emily is not eligible for coverage because the family's income is above Ohio's eligibility limit of 200 percent of the FPL. Facing monthly bills in excess of $3,500 the family has been forced to make hard decisions about Emily's care. She has been reduced to 20 minutes of professional speech therapy a week and has had to go without services such as hearing tests, corrective treatment for an eye condition and physical therapy while the family tries to save enough money to afford them.

Imagine if Medicare worked the same way-a retired couple in Montana receives Medicare, but another retired couple in Idaho does not because Idaho doesn't provide coverage to seniors making more that $29,000 annually (that's only 200 percent of the FPL). It just wouldn't make sense. But that is exactly how it works for many families and the reason why Sarah and Emily, and so many others, have such a large stake in the health reform debate.

In The Last Piece of the Puzzle, we offered solutions for leveling the playing field for children and their families in health reform. Congress could implement a federal minimum standard under which all children up to 300 percent of the FPL receive coverage through Medicaid/CHIP, and families above that income level receive financial assistance to buy coverage. In addition, beyond giving children an insurance card, Congress could ensure that the card translates into the receipt of child-specific benefits.

In the coming months, I will take Senator Dodd's lead and continue to think about Sara and Emily - to remind myself what health reform is all about: making sure that parents no longer have to make difficult choices on how to provide health care to their children, and that all children receive the care that they need, no matter where they live.

Last week, the Senate HELP Committee publicly released the first, major bill outlining its proposal for health reform, the Affordable Health Choices Act.  It is easy when reading any bill -- especially a 615-page one that you are reading at 5:00 a.m. to avoid being distracted by e-mail, phone calls, and kids in need of toasted waffles -- to miss the big picture and, instead, to start underlining the spots that you particularly love or hate.

So, before jumping into some of the blow-by-blow of what this bill means for kids, it is worth stepping back to say that if health reform were to follow the path outlined in the HELP bill, it would be a major, transformative step forward.  Millions of Americans would secure health coverage.  And, our health care delivery system would begin to move toward the much-discussed (but little acted upon) goal of delivering more cost-effective, high quality health care that focuses on preventing disease rather than merely treating it. 

We've finally got a glimpse at how the all-important Congressional Budget Office is thinking about evaluating the cost of the major health reform proposals under consideration in Congress. CBO today released a preliminary analysis and blog entry on the estimated impact of Senator Kennedy's Affordable Health Choices Act. Unfortunately, the results are seriously anti-climatic.

The problem?  The Kennedy HELP bill alluded to - but did not actually specify - how it would approach several key elements of health reform: A major expansion of Medicaid to 150 percent of the federal poverty level (FPL); a requirement that employers purchase coverage for their employees or pay a fine; and a public plan option.  So, CBO didn't include these elements in its analysis of the Kennedy HELP bill, which means there is a huge gap between these preliminary results and what we'd see if the "real" bill with all key elements in place were evaluated. It is a bit like reading a critic's review of a theater production in which several of the main characters are left un-played.

To me, the most interesting part of the analysis from a kids' health coverage perspective is a dry little paragraph on the expected impact on Medicaid and CHIP of the Kennedy HELP bill:

"Finally, although the proposal would not change federal laws regarding Medicaid and CHIP, it would affect outlays for those programs. CBO assumes that states that had expanded eligibility for Medicaid and CHIP to people with income above 150 percent of the federal poverty level would be inclined to reverse those policies, because those individuals could instead obtain subsidies through the insurance exchanges that would be financed entirely by the federal government. Reflecting those reductions in enrollment, federal outlays for Medicaid and CHIP would decline by $38 billion over 10 years."

In other words, if we set up a major new, 100 percent federally-funded subsidy program, states will have every incentive in the world to drop any and all optional Medicaid and CHIP coverage that they can.  Even if the Medicaid or CHIP coverage is better for people - for example, providing the full range of services that a child with a disability requires - it is too much to expect states to voluntarily continue to provide it when they, instead, could drop it and allow these people to enroll in federally-subsidized coverage. And, the vast majority of "optional" state expansions above 150 percent of the FPL are for children, either through Medicaid expansions or CHIP.  As I needn't remind the people of California who are facing a Governor who has threatened to eliminate the state's CHIP program, CHIP, for now, is an entirely optional endeavor and can be dropped by a state at any point.

So, without some kind of maintenance-of-effort requirement on optional Medicaid and CHIP coverage (or a guarantee that any coverage children receive through an Exchange will be as affordable and strong as they receive through Medicaid or CHIP), we are at risk of seeing some children being made worse off by health reform.

The creative people at the Center for American Progress have been busy.  They have managed to boil down two complex topics into user-friendly tools.  First, they released a report with an interactive map demonstrating the economic impact of "uninsurance" (the word is so new it is not in your dictionary yet) on each state.  Then they released a YouTube video with simple animation to demonstrate what the cost of doing nothing on health reform would mean for businesses and families. 

CAP is managing to provide this public education service while still tending to the less-visible behind-the-scenes work necessary to get a good health reform bill passed by Congress.   In fact, CCF's Jocelyn Guyer can attest to that fact as she recently joined the Center for American Progress for a good old-fashioned Capitol Hill forum focusing on what children need from health reform.

New media tools are really fun but they are only as effective as the people behind them.  The Center for American Progress has the depth and breadth of understanding necessary to pull it off with panache.  

Whew! It seems impossible to keep up with all the recent activity related to health reform these days - and it seems like the next two weeks are going to be even more action-packed. To help me (and all of you) stay on top of all the goings on here in DC, we've put together a calendar of what we are expecting over the coming weeks.  First you'll see that next week, the Senate Committee on  Health, Education, Labor and Pension (HELP) will be marking up the bill it released earlier this week (Affordable Health Choices Act).  That will be followed by the release of the Senate Committee on Finance mark, which we expect to be acted upon by the committee the following week.  Finally, we expect hearings to begin sometime in the next few weeks on a bill being developed by a "Tri-Committee" effort of the House Committee on Energy and Commerce, the House Committee on Education and Labor and the House Committee on Ways and Means.

Not destined to be as au courant in health reform circles as Dr. Atul Gawande's article on health care costs that President Obama is now touting, but if you would like the blow-by-blow on how the Children's Health Insurance Program Reauthorization Act (CHIPRA) changes the way that federal dollars flow to states to operate their CHIP programs, I strongly encourage you to check out our new "CHIP Tip". Issued jointly with the Kaiser Commission on Medicaid and the Uninsured, this latest installment in the CHIP Tip Series on key provisions of CHIPRA goes through the details of how CHIP financing will now work.

If you aren't up for the blow-by-blow version, I'll let you cheat by sharing the bottom line: Each and every state now has access to the federal matching funds that it needs - one way or another -- to sustain its CHIP program and adopt significant expansions. No longer should there be any doubts in the minds of state policymakers that if they can come up with their own share of the required funding (i.e., state matching funds), the federal government will be there as a strong, reliable financing partner in the effort to cover children.

Of course, we realize that the big issue these days IS whether states can come up with their own share of the required money.  Alarmingly, Governor Schwarzenegger is moving forward with plans to eliminate the state's Healthy Families program on the grounds that California doesn't even have the money needed for continuing its existing CHIP program. While this is a dire situation that will be devastating to children if put into effect, the attention it has (appropriately) received has drowned out the reality that lots of states are taking advantage of the new federal funding opportunities and seizing the moment to move forward in offering coverage to more of America's uninsured children.

Joan Alker, Cindy Mann and I started the Center for Children and Families jointly, coming together to do so because we shared a vision of a mission-driven policy organization that could combine the best of research and analysis with strategic thinking and communications to expand and improve health care coverage for America's children and families. Cindy's departure to serve as Director of the Center for Medicaid and State Operations doesn't change our vision, but is a powerful symbol of the promising new environment in which we are operating - an environment in which the leading official overseeing Medicaid and the Children's Health Insurance Program is deeply committed to making these programs work for children, families, seniors and people with disabilities.

Central to our vision is that the most effective way to work on behalf of children is to do so in collaboration with state-based partners who are steeped in the day-to-day work of improving the lives of children, with state officials who run the programs that are the cornerstone of coverage for low-income children in this country, and with the families and grassroots organizations in which they are involved that are working to secure health care coverage.  The ideas and energy that come from this collaborative approach have been, and will continue to be, central to our work at CCF.

And, we're all going to need those ideas and energy.  In looking ahead, it is clear that we are on the brink of a potentially transformative era in policymaking for children and families.  CCF continues to work intensively with states pushing ahead in taking advantage of the opportunities created by CHIPRA, and, in doing so, getting a jumpstart on the broader health reform efforts that are on the horizon.  Those broader health reform efforts are now front and center in Congress, and much is at stake for children, as my colleague Dawn Horner and I recently have written about in the new CCF report, The Last Piece of the Puzzle: Providing High-Quality, Affordable Health Coverage to All Children through National Health Reform.
 
We haven't skipped a beat at CCF when it comes to the work - if anything, we're accelerating our efforts given all of the opportunities to improve health care coverage that are on the table at the state and federal level - but we will miss Cindy dearly as a friend. CCF is like a close-knit family and we will stay connected no matter how many miles are between us. (But we sure hope Cindy doesn't ask us to travel to Baltimore too often!)

Emma Walsh-Alker and Mr. Parodi's 5th grade class




CCF Blogger Joan Alker has been working on children's  issues for over twenty years.  When thinking about why children's health needs deserve more attention in health reform, she decided to seek out experts on the topic - her daughter and fellow 5th grade classmates in a D.C. public school.  Her daughter, Emma, is an experienced blogger and wrote the following entry about her mother's visit to her classroom.

Last week my mom came to my class (I'm in 5th grade) to discuss the important issue of why children especially should have health care coverage. Everyone contributed ideas to the discussion; and their ideas about the problems caused by not having health care ranged from doing worse in school, spread of sicknesses, quality of life, and costs of hospitals being so high. Below are ten reasons, (not in order of significance) that we came up with: (well, actually we came up with more...but we didn't want you to drift off.)

1. Kameron: Children like to play games - for example, tag and hide-and-go-seek, which are both touching games. This means transmission of germs.

2. Shaniah: Sometimes, when parents lose their jobs, their kids lose access to medicine, which they need to survive.

3. Max: Children shouldn't be dying from such simple things like teeth or chickenpox. Children with health care coverage are most likely to grow up and get a fine education, and then the job they've always wanted.

4. Alicia: Not having health coverage can affect the child's education. For instance, let's say recently the child went to the hospital and the bill was very high. The next day, the child comes home from school and needs $10 for a school field trip. The parents cannot afford to pay for the field trip if they wanted to be able to pay the bill from the hospital.

5. Zahra: All kids should have health care coverage because kids have the weaker immune systems and can have more damage done to their bodies than adults.

6. Bakari: Another big reason that kids need health coverage is that if they cannot get vaccinations, then they die or get a disability.

7. Jonah: Having no health care decreases quality of life because you spend your time in a bed or at a hospital and not able to do the things you want to do.

8. Sam: Having disabilities and dying does not give kids a chance to unleash their full potential, which worsens the quality of their life. This affects future society for the worse.

9. Devin: Parents should not be paying thousands of dollars because their children need medical attention.

10. Karla: Another example why kids should have health care coverage is so kids would get the medicines they need. Without this, kids would get sicker and miss days of school, which causes them not to learn much.

Not being covered affects so many things in a child's life, and we as a society need to make sure that all kids are able to go to the doctor and receive the coverage they need.

Kay Johnson



Kay Johnson has been a leader in child health policy for 25 years. She is a Research Assistant Professor of Pediatrics at Dartmouth Medical School and a Lecturer in Health Policy at the George Washington University. She also is president of Johnson Group Consulting.

With passage of CHIPRA, federal policymakers may be tempted to think they need not worry about children as they discuss health reform.  Yet the truth is that any major health reform legislation will have an impact on children's coverage and ultimately on their health. Whether health reform proposals are aimed at the employer market, intended to create a new public plan, or to make adaptations to Medicaid, children will be affected in substantial and important ways.  As Congress and the Obama Administration work to provide coverage for more Americans, they should also pay attention to children.

For children under age 21, health plans should be required provide an appropriate child-specific benefit package.  Such a package would reflect the unique needs of children and be designed to support the optimal development of children.  It should include coverage for prevention, diagnostic, and treatment services to promote the physical, mental, behavioral, and oral health of children and to correct or ameliorate defects, illnesses, or other medical conditions.  Preventive services should fit the American Academy of Pediatrics Bright Futures guidelines, particularly since the Task Force on Clinical Preventive Services list of evidence-based practices does not include many child-relevant services.

The old adage "children are not little adults" is particularly true in terms of health care.  Compared to adults, for example, children need distinct content in preventive "well-child" visits, require different prescription drugs or medications delivered in different dosages, and present with more opportunities to prevent disability and chronic disease.  Their brains, bodies, teeth, and all are growing and developing.  Moreover, children who have serious illness or other special health care needs have better outcomes when they are cared for by pediatric medical specialists and are covered by child-appropriate benefit packages.  Appropriate, evidence-based children's health benefit packages are, of necessity, different from those of adults.