With All Our Might...Elevating Child Health Policy

How Might the Budget Debates Affect Children's Health Care?

It’s July in Washington, DC, when congressional committees begin meeting to decide how much funding each government program will get next year. This is always a contentious process, but this year is shaping up to have more July fireworks than usual.

The process got off to a strange start in March when House Budget Committee chair Paul Ryan (R-WI) introduced his budget proposal before the President introduced his. A highly unusual move, but not unexpected; the President’s budget is usually released in February, but this year wasn’t released until April (largely because of continuing questions about sequestration; another issue altogether which, for the sake of keeping you awake, we’ll avoid here).

The Ryan budget passed the House, which is controlled by Republicans, but hasn’t been taken up in the Senate, which is controlled by Democrats. Instead, Senate Democrats release their first budget proposal in four years which, of course, has no chance of being passed by the House. Thus began the stalemate; one which has happened nearly every year in which different parties control each house of Congress. To avoid a government shutdown, both parties usually come together in the fall to iron out a compromise to keep government programs running at the previous years’ funding levels – this is called a “continuing resolution.”

This year, however, seems to have its own unique set of issues, and they could have an effect on programs that help ensure kids’ access to doctors, such as the Children’s Hospital Graduate Medical Education (CHGME)—a  program that funds training for pediatricians. For background, we need to get a little into the weeds of the congressional budget process.

Normally, House and Senate appropriators get together to determine how much money they are able to spend on government programs. In technical terms this level of funding is called a “302(a) allocation.” The appropriations committee in each body then determines how much money to give to each of 12 appropriations subcommittees, each of which decides funding for a different sector of the government. (For example, there is an appropriations subcommittee on Labor, Health & Human Services, and Education, which determines funding levels for most education and health programs, including the National Institutes of Health and CHGME.) The funding level for each subcommittee is called a “302(b) allocation.”

This year, the House and Senate never met to decide on a 302(a) level; thus each body is working with a considerably different budget number. The House is working with a level of $967 billion, and the Senate with a level of $1.058 trillion. This sizable gap is the source of the friction between the two bodies of Congress (and, as we’ll see in a minute, the President).

Because it’s highly unlikely the House and Senate will be able to reconcile these differences, it will mean a showdown in the fall, when Congress will once again attempt to forge a continuing resolution to keep the government running. Only this year, they’ll also have to contend with the sequestration budget cuts (sorry, I said we wouldn’t mention those but it couldn’t be avoided) as well as the starting period for open enrollment in the Affordable Care Act’s health care exchanges – the funding for which congressional Republicans are highly unlikely to approve. The President is currently traversing the country and urging Congress to work out these differences to avoid a government shutdown.

Now let’s talk about how this affects CHGME. The Senate Labor-HHS-Education Appropriations subcommittee met on July 11 and approved a funding level of $267.3 million for the program. It’s not as much as the $317.5 million that is needed to meet children’s growing need for pediatricians and pediatric specialists, but it’s much better than the President’s proposed level of $88 million. (It’s also the same amount that Congress ultimately approved last year for the program,though the sequestration meant the FINAL amount for the program was approximately 5 percent less.) 

That’s the good news. The bad news is, because of the considerably smaller 302(b) allocation, the House Labor-HHS-Education subcommittee is working with nearly $43 billion LESS funding than its Senate counterpart.  That means it will need to make substantial cuts to many programs to come up with a bill that fits within the overall spending cap. While nothing has been completed, it’s possible that CHGME funding could be reduced as a result of this huge disparity. There are already signs the House subcommittee is having trouble settling the issue, as a meeting to discuss the bill scheduled for July 25 was cancelled and has yet to be rescheduled.

That means there’s still time to contact your legislators and tell them to support CHGME. Cuts to this program would hamper important training programs for pediatric specialists, who are already in short supply in many parts of the country.

We’ll keep you posted as the budget process moves forward.

Capitol Hill Medicaid Briefing Series Continues with “Keys to Kids Care: Unlocking Ideas to Improve Care for Kids in Medicaid"

As implementation of the Affordable Care Act continues, and as Congress continues to discuss proposals to reign in health care costs, it’s important legislators take note of impactful work by hospitals, non-profits, and other groups that improves care for children in Medicaid while reducing costs – both now and in the future.

To that end, on July 12, the Children’s Hospital Association, in cooperation with the Congressional Children’s Health Care Caucus, hosted a briefing on Capitol Hill which explored three unique health care programs for kids. Titled “Keys to Kids Care: Unlocking Ideas to Improve Care for Kids in Medicaid,” the briefing brought together three panelists with unique insights into how Medicaid serves children and  highlighted innovative efforts that improve health outcomes as well as help families better manage their children's health.

Dr. Floyd J. Malveaux of the Merck Childhood Asthma Network (MCAN) spoke to asthma as the most common chronic condition among children and second most expensive. Treating asthma costs $8 to $10 billion annually and “is widespread, serious, and costly.” Half of annual asthma medical expenditures are paid through Medicaid. That’s the bad news. The good news is the number of kids with asthma can be lowered, and costs reduced, through evidence-based interventions that help identify kids with potential problems and lower their asthma risk. Dr. Malveaux illustrated numerous successful programs such as the HEAL Program in post-Katrina Louisiana that help reduce asthma triggers in homes and dramatically reduce long-term costs.

Dr. Jocelyn Lawrence, outlined a unique program that targets potential health issues in kids before they become serious, thereby reducing long-term costs of care. Dr. Lawrence talked about the work done by the Dr. John T. Macdonald Foundation’s School Health Initiative, which teams public schools in Miami-Dade County team with the University of Miami Leonard M. Miller School of Medicine to provide access to primary care and nursing in underserved Florida public schools. Clinics are set up in the schools themselves, making it easier for children to make appointments. Dr. Lawrence noted that 85 percent of the kids at these schools are on reduced lunch programs, 32 percent are obese or overweight, and an estimated 25 percent have serious mental health issues. The School Health Initiative provides physical exams, immunizations, and many others to these kids free of charge. As a result, there has been a reduction in 911 calls and emergency room visits as well as vastly improved attendance rates in schools. Last year, a $4 million innovation award grant from the Centers for Medicare and Medicaid Services helped add dental and mental health services to the program, and extended services to the students’ families. These preventative services will, in the long run, save millions in emergency room visits and unpaid medical bills. More importantly it will vastly improve the quality of life for these kids.

Dr. Sandy Melzer of Seattle Children’s Hospital focused on providing care for medically complex kids in the Medicaid system. These children have chronic, physical, developmental, behavioral, or emotional conditions, often affecting two or more body systems and requiring intensive care coordination to avoid excessive hospitalizations or emergency department visits. Typically they lack a medical home and likely have multiple providers, not all of whom are in communication with each other. In addition, many of these kids visit Seattle Children’s from outside Washington state triggering issues with the Medicaid programs in patients’ home states.

There are 2 million children enrolled in Medicaid who are considered medically complex. Due to the level and intensity of care these children need and the cost of providing such specialized care, this population accounts for approximately 40 percent of all Medicaid spending on children. Building a sustainable model to provide coordinated care for these kids presents a number of challenges, the biggest being that care coordination is extremely difficult (in terms of tracking the patients) and expensive (because of staff and IT needs).

But, as Dr. Melzer noted, there are numerous ways to save money. For example, interventions focusing on inpatient care and drugs can reduce costs by nine percent by providing care plans and medication reviews to patients, and can also reduce readmissions. Dr. Melzer also referenced a recent proposal by the Children’s Hospital Association, which would createnationally designated pediatric networks to support care coordination for medically complex children.

The Medicaid Matters for Kids briefing series is also sponsored by the American Academy of Pediatrics, Family Voices, First Focus, Georgetown Center for Children and Families and March of Dimes.For more details on the remaining briefings in the series, please visit www.childrenshospitals.net/medicaidmatters.

One More Family Advocacy Day Wrap-Up

NOTE: On June 19-20, the Children's Hospital Association held our ninth annual Family Advocacy Day in Washington, DC. Fifty-four amazing kids came to Washington to advocate for better health care for kids, including Lily Blackburn. In this post, Lily's mom Chrissie shares her thoughts on the experience. (Click here to read Chrissie's previous blog post.)

No words can describe the grateful feelings and the level of energy that spread over all the families, children, hospital staff, and CHA staff at the Speak Now for Kids Family Advocacy Day. I can say that I honestly feel that sharing Lily’s and all the others children’s stories impacted how the Ohio and several other state’s Congressmen and Senators will consider Medicaid coverage for our medically fragile children. They have all been through a great deal and many will continue to need continuous care at the amazing pediatric hospitals all over the United States.

I want to thank Rainbow Babies and Children’s Hospital, Heidi Gartland, Dr. Lolly McDavid, Maureen Clark, Elizabeth and Christine Click, and Michelle Snyder in providing the support for Lily, Charles, and I to be actively involved in such an important initiative for children. I am sure all the families that were present are grateful for participating. We are all so proud of our brave and courageous children in the challenges they have had and will face in the future.

I also want to thank Senator Brown, Senator Portman, Congressman Renacci, Congresswoman Kaptur, Congressman Jordan, Congressman Ryan, Congresswoman Fudge, Congressman Gibbs, Congressman Latta, and all their staffers for taking the time out of their busy schedules for meeting with us to share the experience, strength, and hope of the life and journey we are living with our amazing daughter Lily.  We are counting on you, everyday, to provide children with the care they need with Medicaid coverage and the specialized training that pediatric physicians need to continue researching and loving our nations children.

Thank you to the Children’s Hospital Association for such a wonderful party, an amazing expereince, and the gifts for Lily. She sleeps with her Yo Gabba Gabba “Brobee” every night. Upon our return I asked Lily, “Did you have fun in Washington DC?” her reply, “It was special Mommy.”

Family Advocacy Day Wraps Up

NOTE: On June 19-20, the Children's Hospital Association held our ninth annual Family Advocacy Day in Washington, DC. Fifty-four amazing kids came to Washington to advocate for better health care for kids. In this post, mom Carye Everett shares her thoughts on the experience. (Click here to read Carye's blog post about her daughter, Tori.)

We had a very powerful visit to Washington DC. We met with the chiefs of staff for three Representatives and one Senator.  

We started out with a tour of DC and visited the Lincoln Memorial and the Smithsonian Air and Space Museum. After returning to the hotel for lunch, we attended a session about how the kids need to speak up about their needs. They watched a great presentation and saw a Schoolhouse Rock video about how a bill becomes a law. We were even able to see some practice sessions about how to speak to our members of Congress on Thursday. Sarah Wayne Callies, who played Lori on The Walking Dead played the Congresswoman. Brittany almost jumped out of her skin when she was able to meet her. Max, the boy who played Darth Vader in the commercials, came to tell his story.  Tori enjoyed talking to him about open heart surgery, something they both have in common.

That night, we had a fantastic party to attend. There was a band playing music for the kids. Tori enjoyed dancing and playing instruments with them. The teen area had a basketball game, air hockey and a lounge.  Each one of us got at caricature done and the girls had face painting. During the day, the girls had received a gift; Tori received an autographed picture from Selena Gomez, and Brittany received a copy of Katy Perry’s DVD and Katy had signed the DVD case. The girls were so excited with their gifts. 

Thursday, we were introduced at each office, and then we told our story. We spoke explaining what life was like with one disabled child, and then how it changed even more when we faced yet another medical crisis with Brittany. The circle of care spreadsheet was provided for each chief of staff, showing in detail of the number of doctors, prescriptions, diagnosis, medical equipment, and therapies each girl has. It was something tangible that they could review and then share with their Congressmen. After we spoke, the representatives from the hospital talked about their needs for health care. 

We were able to explain how wonderful it was when Tori had medical assistance for the year she spent in the hospital. Then we explained how hard it has been financially since we had medical assistance taken away. The government views the parent's income to decide if a child needs assistance, rather than look at the needs of the child, or children in our case. We are in financial crisis trying to deal with the daily care of our children. We have to decide each week if we are going pay the bills, buy groceries, or get medication/medical needs. Our family is on about 30 medications daily, between the five of us. Some are covered with a copayment, up to $30, while others are not covered and cost up to $100. It is extremely expensive to have medically complicated children. And that was our point to the Congressmen.

We also spoke about continuity of care, and the timeliness of making appointments with our doctors. Victoria has almost every type of specialist that there is at Mt. Washington and Hopkins. Having doctors all being able to access the information needed for continuity of care is extremely important. Due to the fact that she is so medically complex, doctors need access to her records. Making doctor appointments also should not take months for children like Tori and Britt, or any child. Specialists should be accessible when they are needed and the government should make it easier for doctors to specialize in diverse fields.

I managed to get through the day without tearing up. I stayed focused on what I needed to say and get my message heard. So many people need reform to health care, especially for children. I feel like I now have a new mission in life. I need to help get health care reform for children like ours and other medically complex children. More people need to reach out to members of Congress around the country so Medicaid will not be cut and the criteria for getting access to help changes, so families like ours can get help.

A Family Advocacy Day Welcome

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story comes from Terri Healey, who attended Family Advocacy Day with her daughter, Leanna, last year.

Last year my daughter, Leanna, her Dad, and myself, were asked to attend FAD12 to represent Boston Children's Hospital. I have been thinking about the families participating this year and especially so last week, when I was watching a tribute on TV to the late Massachusetts Governor Paul Cellucci.

The Governor died at 65 of ALS (Lou Gehrig's Disease). Governor Cellucci did many wonderful things in his life. Even during his last two years of his illness he raised more than two million dollars and was an advocate for research for ALS.

There were many eloquent speeches given about Gov. Cellucci. But one speaker's words really hit home. This speaker was Dr. Michael Collins, Chancellor of The University of Massachusetts medical schools. In his speech he said "He (Cellucci) was aware that government funding of medical research was not keeping pace with inflation. He was worried that cures were being delayed because diminished research funding could not keep stride with the intellect and innovation of those who conducted it." He added, "There isn't one of us who wants to have to face the prospects of a very difficult and challenging disease. There isn't one of us who wants to believe that our nation cannot invest in research so that we can actually find a cure for diseases like ALS."

These words made me think of the importance of Family Advocacy Day.

Last year, Katie Beckett's mother Julie came to speak to the family advocates about the Katie Beckett Waiver. Mrs. Beckett came to speak to us even though her daughter had just died about two months before the conference. She wanted us to know the importance of what we were here to do in D.C. Because of her advocacy, President Reagan signed the law creating the Katie Beckett Waiver so that all disabled children could receive Medicaid support.

 

Leanna Healey meets with then-Senator Scott Brown (R-MA)

This waiver keeps many families intact. Prior to this waiver many children had to be institutionalized for life.

 

During these difficult economic times with rancorous partisan debate over healthcare, what each of you is doing is so important. As we saw with Mrs. Beckett, one voice can make a huge difference. You are a voice for many. Think of Mrs. Beckett, Governor Cellucci, and all the past participants of previous Family Advocacy Days as you embark on this important journey. Our family wishes you good luck with your meetings.

Attending Family Advocacy Day was life changing and empowering for Leanna and our family. I know it will be for yours.