Recently in Family Stories Category

By Gary Brunk

President & CEO, Kansas Action for Children

"I just couldn't believe the state would cut personnel on a program that's for kids," commented Harold Stultz to a reporter from the CBS affiliate in Wichita, Kansas. 

According to a local television news report, Harold's 12-year-old son Keenan had injured his knee during a wrestling match.  Harold believed that Keenan was covered under HealthWave, the state's Medicaid and CHIP program, but was surprised to learn that the application had never been processed because of a backlog. 

In fact, Keenan is one of many children in Kansas waiting for health care coverage because the state has not been able to process their applications.

The need for health coverage has been growing as the number of uninsured children in Kansas climbed from 51,000 to 72,000 in just three years.  The pool of potential applicants was further expanded on January 1 of this year, when income eligibility for HealthWave increased from 200 to 250 percent of the federal poverty level.

Cuts in funding that reduce the state's ability to process applications, on top of the increase in demand, add up to a large backlog of unprocessed applications, now at around 20,000.  The state is taking steps to simplify the application and renewal process that should result in long-term improvements, but the ongoing recession and a projected state deficit of around $400 million for the next fiscal year mean that reducing the backlog in the short-term will be extremely difficult.

The situation in Kansas underscores the pressing need for further fiscal relief for the states, and in particular for the FMAP extension proposed by Senators Rockefeller and Reid.

For self-employed Harold Stultz, the backlog means his family has $6,000 in medical bills they need to cover.  But Harold knows he is not the only one affected.  "It...upsets me even more that there are more people in my situation," he says.  

How will Congress respond to the predicament of Harold's family - and the predicament that so many other families find themselves in during these tough economic times?

The views expressed by Guest Bloggers do not necessarily reflect the views of the Center for Children and Families.

Most of us were glued to the TV set last night waiting to see what President Obama was going to say about the future of the health care reform bill given its now uncertain fate in Congress. As I settled in to watch with my husband and one of my girls (the other one sadly could not be pried away from reading New Moon), I found myself getting antsy.

Why do we find ourselves in this situation? Why isn't he announcing that he signed the bill today?

Passing comprehensive health care reform legislation is extraordinarily difficult. Passing any comprehensive bill is difficult these days. But I have very little patience at this point for the political pundits and everybody else assessing the political calculations of whether passing the bill is the right political choice. Personally I think it is. And I thought the President did a nice job in his speech last night in making clear that he wants to see a bill. But the public wants to see results -- results that will improve the lives of families.

Having worked on public policy issues affecting low-income families for the last twenty years in Washington it's easy to become cynical. It's almost embarrassing to let your compassion for people show through in public without citing research and data and carefully crafted messages. Here goes, I'm going to let the policy wonk take a backseat and talk about people because that's what this is really all about -- people who need results from our leaders.

Children need health care reform to ensure that they have access to affordable comprehensive coverage. Yes kids have done relatively well with our current assortment of public programs, but not everywhere. Some states are leaders, but other states will never catch up. And the current state fiscal crisis reminds us that until we have a universal, federal guarantee of comprehensive coverage for children we will be selling our kids short.

Parents need access to affordable coverage options that don't disappear when they lose a job or become sick. Coverage of low-income parents through Medicaid is inadequate at best and almost non-existent in some states. Children do better when their parents have health coverage. Expanding Medicaid coverage to all parents below a specified income level regardless of where they live, as both bills do, would be an enormous victory for the most vulnerable families in our nation.

So-called "childless adults" need access to affordable coverage options. OK the first two are kind of no-brainers for childrens' advocates. So why do I keep finding myself thinking about two "childless adults" that I met in 1991 when I was writing a report on homeless veterans? Childless adults are not politically popular. But I can't get the stories of these two men out of my head.

Both of these men were Vietnam veterans and had seen combat duty in Vietnam. One was white and one was black. One was a Member of Congress who was the primary sponsor of a bill to help homeless veterans (I'll call him Al) and one was a homeless veteran (I'll call him Bill) who was an eloquent spokesperson. At the time that I did the report, I met Bill who was living in his truck. He had, ironically, been working in the Senate as a maintenance worker who moved furniture around. But one night a woman got shot outside his apartment. A shotgun ripped off half of her face. Bill went out to help her (he had served as a combat medic in Vietnam), and she died in his arms. This tragedy triggered PTSD and his blood pressure soared. He lost his job and his health insurance and got little help from the VA. He ended up living in his truck. He was a "childless adult" with no insurance.

Now let's turn to the former Congressman. Surely he doesn't need any help from the pending bills?? Well it turns out that because this public servant was an extraordinarily dedicated guy, he turned down all of the perks of his job (the pension and the health insurance). Then, at an early age, he developed Parkinson's disease. And because he had the audacity to live longer than expected, Al has hit the lifetime cap on his insurance policy. Now people have to have fundraisers to pay his medical costs. Pending bills would remove lifetime caps.

So let's all redouble our efforts to pass health reform. For the kids, their parents and for Al and Bill.

The image of sweet little Sarah McIntyre immediately came to mind as I read the Pediatrics Journal's study that showed that children with special health care needs were 57% less likely to be uninsured in 2005 than those in 2001.  The Pediatrics report is great news but it should be taken with a dose of caution.  CHIP and Medicaid have helped improved access to affordable health coverage for children with special health care needs but those gains can be as precarious as their health so without continued vigilance, this trend could rapidly deteriorate. 

The precarious nature of health coverage for children with special health care needs is what brought Sarah to mind.  Sarah is a 3rd Grade girl from Yakima, Washington who was born with a hole in her heart and cysts on her lungs.  Her life depended on consistent, quality health care that she received through Apple Health for Kids, Washington State's Medicaid and CHIP program.  She lost her health coverage when her parents received modest raises that put their income slightly above the eligibility cap.  The McIntyre family went through a difficult period in which Sarah was uninsured.  Fortunately, Washington state expanded coverage to families earning up to 300% of FPL with the help of increased federal funding included in CHIPRA and Sarah was able to enroll in Apple Health for Kids once again.

There are many more Sarah McIntyre's out there.   According to another report in last month's Pediatrics, approximately 1 of every 7 children in the United States has special health care needs. Children with special health care needs are those who are at increased risk for a "chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally". They are at greater risk for unmet health care needs and, on average, expenditures for their care are about 3 times higher than for other children. Their families oftentimes must rely on Medicaid or CHIP programs to find coverage.  (Medicaid coverage is a better fit because it is more comprehensive than CHIP and provides an important lifeline to children whose health care needs are often greater than the norm and whose families' limited incomes make it difficult for them to afford uncovered health expenses.) There are also many children with special health needs who remain uninsured because insurance providers will not accept them with a pre-existing condition or because their families can't afford the high private health insurance premiums to get the coverage their children need.

Sarah's story and the Pediatrics reports remind us of what's at stake in the health reform debate for families of children with special health care needs. 

 

 

 

 

As health reform discussions continue, one key question that will be addressed is what benefits will children be eligible for and how much will they cost?  Because they are growing and developing, children have a distinct set of health care needs that evolve over time and differ from those of adults.  Moreover, while as a group children are relatively healthy, one in seven has special health care needs.  Given that under reform, there is a lot of discussion about covering kids in private plans, it is particularly important to consider how well these plans might meet children's health care needs.

Today the Kaiser Commission on Medicaid and the Uninsured released a paper CCF co-authored with our colleague at the Georgetown Health Policy Institute, Karen Pollitz, entitled "Children and Health Care Reform: Ensuring Health Coverage Meets Their Needs". Jacob and Isabel are the protagonists of this report - we look at their health care needs in a typical year, and see how they would be fare in the Federal Employees Health Benefits (FEHBP) Blue Cross/Blue Shield Option - the private plan that Members of Congress receive - and a relatively generous one at that.

Jacob is a 7 year old boy who loves playing baseball and is generallly healthy, but has asthma and allergies. Isabel is a 13 year old girl who has cerebal palsy and needs extensive services to ensure that she is able to function optimally and attend school - where she has been doing extremely well. One of the key findings of the report is that a family with a relatively healthy child may still face significant out-of-pocket costs under the FEHBP Blue Cross plan. While most of the services Jacob uses would be covered, we estimate that Jacob's family would spend about $2,020 in out-of-pocket costs under the BCBSSO plan to meet his annual health care needs in the past year.

A child with special health care needs , like Isabel, can face significant gaps in coverage and large out-of-pocket costs under the BCBSSO plan.  Isabel's family faces annual out-of-pocket costs in excess of $9000. Some of her services are not covered, and sometimes her family has to go out of network to find the specialist she needs.

In contrast, Medicaid fully covers children's acute and long-term care needs with no or very limited cost-sharing requirements.  Under Medicaid's EPSDT benefit, all of the needed care for both Jacob and Isabel would be covered.  The EPSDT benefit covers all medically necessary care for children, which means it fully covers preventive and primary care, including dental, hearing, and vision care, as well as all acute care needs and long term care needs for kids that need it.

These findings illustrate that the content of coverage provided under reform will have significant implications for children's access to care and their families' financial security.  As policymakers consider standards for coverage provided to children under reform, it will be important for them to consider not only what benefits will be covered, but also the limits that will apply to covered benefits and required cost-sharing amounts, including deductible, copayment, and coinsurance charges.

Last week, I attended a briefing at the Kaiser Family Foundation that sought to highlight the impact of the current economic crisis on the ongoing struggle to find affordable health coverage.  There was hardly a dry eye in the room after the Foundation screened this video, profiling people in three communities hard hit by the recession: St. Petersburg, Florida, Beloit, Wisconsin, and Long Island, New York.

I cried an extra tear because these heart-wrenching stories are being overlooked in the absurd din over completely fabricated claims about things like 'death panels' of government bureaucrats allegedly coming to Granny's house to decide if she is going to live or die. (Fact check: The House bill includes a provision to provide Medicare reimbursement for advance care planning so that patients have the option of consulting with their physicians about their wishes for end-of-life care.)
 

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.

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.

The Center for Children and Families came into being four years ago today to develop effective, practical strategies to improve access to quality health care for children and families.  As we spend our birthday watching the Senate Roundtable Discussion, "Increasing Access to Health Care Coverage," we wanted to celebrate with you online (fewer calories that way).