With All Our Might...Elevating Child Health Policy

Remembering Katie Beckett

by Peters D. Willson, Former Vice President for Public Policy (1987 - 2008), National Association of Children's Hospitals, now Children’s Hospital Association

It says something about what an extraordinary woman Katie Beckett became that I was stunned by the news of her death at just 34 years of age. Although I first met Katie when she was a teenager and knew well the enormous and often life threatening challenges she had faced since infancy, it never occurred to me Katie would not lead a long and full life. I took her triumph over great odds for granted, because that's the way she lived her life - she wanted to be like everyone else and often succeeded.

Having worked for children's hospitals for so many years and loved what they do, I can't help but think that Katie's life is emblematic of what an amazingly valiant child, incredibly dedicated family, and world class pediatric providers can do together to stretch the limits of scientific knowledge, human stamina, and spiritual faith. The result: an achievement of what seems to be the equivalent of a miracle - a life saved and fulfilled beyond all hope and expectation.

Of course, Katie was a miracle multiple times over. She not only survived to an age long past when it was thought likely she would succumb. Together Katie and her family transformed the promise of health care for hundreds of thousands of children with serious disabilities and their families. They have benefited from the "Katie Beckett waiver" permitting Medicaid to pay for the care of a child with serious and special health needs at home in the embrace of her loving family instead of confined to a hospital when medically possible. Katie also transformed the lives of people she met everywhere who were inspired by her extraordinary personal example - overcoming disabilities that would have left others dependent to make a life of her own.

But certainly no one was more transformed by Katie than her own mother Julie, who is perhaps one of
the most remarkable, compelling, and effective advocates I ever had the privilege of knowing and working with during my 20 years of advocacy on behalf of the nation's children's hospitals. Julie once told me that as a young woman she had neither experience nor motivation nor example to become involved in advocacy. It was simply not a part of her life in any way. But Katie's need and the love of the whole Beckett family for Katie turned Julie into what I believe is a true-life super hero - a human being of extraordinary acuity, reason, stamina, persuasiveness, grace, faith, and devotion to her daughter. She changed the world, and continues to do so.

When my father died several years ago, one of the condolences that especially affected me was from a friend who never knew my Dad but said that he must have been an exceptional man to have had such a good son. For many years to come, the whole world will know what an exceptional woman Katie Beckett was by the exceptional woman her mother Julie Beckett is. And the whole world also should know what an exceptional mother Julie Beckett is by the exceptional daughter she raised.

My heart, and that of the entire children’s hospital community, goes out to Julie and Katie's father Mark and the whole Beckett family at this time of such great sorrow. We owe them all not only our deepest sympathy in their loss of Katie but also our most profound gratitude.

Congressional Briefing Addresses Why Medicaid Matters for Kids

On Thursday May 17, the Congressional Children’s Health Care Caucus helped to host the third in a four-part series of briefings addressing why Medicaid is essential to children’s health care. The briefing focused on improving mental health services for children enrolled in Medicaid. In addition to providing a background on the issues most important in pediatric mental health, panelists discussed various initiatives that work to increase access to mental health care and that improve quality of care for special populations, such as children in foster care. The briefing was sponsored by the Children’s Hospital Association (formerly the National Association of Children’s Hospitals), the American Academy of Pediatrics, Family Voices, First Focus, March of Dimes, and the Georgetown Center for Children and Families.

Panelists included:

• Jane Meschan Foy, MD, FAAP, Chair, Task Force on Mental Health, American Academy of Pediatrics
• Robert Hilt, MD, Child Psychiatrist , Director of Partnership Access Line Consult Services, Seattle Children’s Hospital
• Steve Tuck, CEO, Children’s Home Society of West Virginia
• Beth Morrow, Director, Health IT Initiatives, The Children’s Partnership

Congresswoman Kathy Castor (D-FL), a co-chair of the Congressional Children’s Health Care Caucus, gave opening remarks at the briefing which mentioned her work on the section 1202 primary care payment “bump-up,” which was recently included in a rule by the Center for Medicare and Medicaid services that includes pediatric subspecialists as eligible providers for the section 1202 Medicaid payment increase to the Medicare level. This “bump-up” is a major policy change and the first time Medicaid payments have been tied to Medicare rates in the program’s history, an important victory for children’s health advocates.

Jane Meschan Foy, MD, of the American Academy of Pediatrics, spoke to the basics of mental health services and the Medicaid population. Currently, one out of every three children in the United States depends on Medicaid, and Medicaid is the single largest payer of mental health services in the country. Foy also spoke to the importance of early intervention and the need to recognize pediatric mental health disorders, as 21% of children and adolescents in the U.S. meet diagnostic criteria for Mental Health disorders. She additionally spoke to problems with access as only 20-25 percent of these children receive treatment, and 40-50 percent terminate services prematurely.

The Children’s Hospital Association was represented on the panel by Robert Hilt, MD, of Seattle Children’s Hospital, who spoke to ways to improve quality and contain costs through the Medicaid program. Specifically he spoke about a program organized and run by Seattle Children’s Hospital in coordination with Medicaid in Washington State that provide antipsychotic medication reviews, through the Partnership Access Line (PAL). PAL has seen average savings in expenditures of about $300,000 a month in the first two years and has reduced the number of anti-psychotic medications prescribed to children in the program. He additionally spoke to the need for encouraging increased access to mental health services through programs provided by PAL through education to primary care doctors in Washington and Wyoming.

The third presenter, Steve Tuck, spoke to personal experiences of children in foster care in West Virginia who rely on Medicaid. He shared the story of a child named Josh who was placed in foster care at age three, separated from his siblings and suffered from multiple mental health issues. However, thanks to mental health interventions that were paid for by Medicaid, Josh has since been adopted, his behavior has significantly improved, and he is a happy, healthy six year old. Josh’s story is important as it showcases how early interventions can reduce the likelihood that a child will require lifetime mental health services, a common problem for children in the foster care system.

The final presenter, Beth Morrow of The Children’s Partnership, discussed the big picture problems involved with mental health Medicaid coverage for children in foster care. Morrow spoke to the fact that Medicaid is the health provider of first and last resort for this population, as over 70 percent of children entering foster care already receive Medicaid. In addition, the average cost of Medicaid per child in foster care is over three times the average cost for nondisabled children. This difference is explained mostly by the fact that nearly 70% of children in foster care exhibit moderate to severe mental health problems. Morrow ended her presentation by discussing successful Health IT programs across the nation which are working to create “medical passports,” for children in foster care to increase both quality and access to mental health services for this population, bringing home the point that Congress must protect Medicaid in order to protect the health of vulnerable populations like these children.

The next briefing, scheduled for Friday July 13 at 3 PM EDT in HVC-200, will focus on reducing red tape in the Medicaid program. For more information visit our website.

For More Information Contact: Gillian Ray, Director of Public Relations,
Children’s Hospital Association, 703-797-6027, [email protected]

The Wilson Family Prepares for Family Advocacy Day

by Cathy Wilson

Our family is so excited about traveling to Washington, D.C. this summer to represent Le Bonheur Children’s Hospital at Family Advocacy Day.  My husband, Robert, and I will be in D.C. with our daughters, Ann, 8, and Mary Quay, 5. Both of our daughters have been patients at Le Bonheur, and we feel so blessed to have an amazing children’s hospital like Le Bonheur in Memphis. 

Our story with Le Bonheur began during Ann’s first year. Ann was diagnosed at birth with a soft cleft palate -- basically a hole in the roof of her mouth, which affected her ability to eat and would have affected her ability to speak if it was not repaired. After we knew Ann would need surgery, one of our first questions was whether we needed to leave Memphis for her care. Through conversations with friends and our pediatrician, we learned of the excellent care available at Le Bonheur and that there was no needfor us to travel. Ann had surgery to repair her cleft when she was 11.5 months old. While the cleft repair is a painful surgery, so much about Le Bonheur made it easier. From the toy she received before surgery to the play room on her floor, we came to appreciate being in a children’s hospital. After three days we took her home with an intact palate (and tubes for her ears), and she has not needed to return to Le Bonheur as a patient since she was discharged. However, we can see now that our experience with Ann’s surgery was in part God’s way of preparing us for the future.

A year and a half later, when we were pregnant with our second daughter, Mary Quay, we learned that she also would be born with a birth defect. She was diagnosed at our 20-week ultrasound with a  neural tube defect, which was later confirmed to be spina bifida - basically, there was a hole near the bottom of her spine. They also told us that she had hydrocephalus and that if she survived, she would need surgery immediately after birth. The maternal fetal doctor who gave us the initial diagnosis gave us a very grim prognosis of Mary Quay’s health and potential and even suggested terminating the pregnancy.  Although we were not sure what Mary Quay’s ultimate health would be like, subsequent appointments provided more hopeful news, and we began researching spina bifida and what treatment she would need. We again had to ask the question, "Do we need to leave Memphis to get the best care for our child?" Once again we were assured by our pediatrician and others that with the pediatric neurosurgeons at Le Bonheur, she would be well cared for, and there was no reason to leave.

Mary Quay was born at a local hospital and transferred to Le Bonheur the day she was born. She had a hole in the middle of her back that exposed her spinal cord. She had surgery to close her back when she was less than 48 hours old, and we spent the next two and a half weeks in the NICU and NICU stepdown units at Le Bonheur. During her stay she was seen by neurosurgery, orthopedics, urology, neonatology, plastic surgery, genetics, physical therapy and occupational therapy. During this more serious and extended stay, we really got a strong dose of what patient- and family-centered care is all about. We could stay with our daughter in her room, instead of just “visiting,” and the clinicians were very good about explaining to us what was happening, what we could expect, and helping guide us through the decisions that had to be made in our daughter’s care. From the moment my husband entered the NICU that first day there was a warm greeting from a Le Bonheur associate basically saying "Welcome to our house – you are going to be with us for a while, and we want you to know you are more than just a guest." This attitude was pervasive from the front desk to the nurses who rotated through each shift to the doctors who were on the floor. It was striking and helped give us peace at such a stressful time.

Today, Mary Quay is a happy and for the most part healthy 5-year-old. She loves playing with Ann and attending Pre-K in a typical classroom. She walks with the aid of forearm crutches and ankle braces. She is also catheterized several times a day and has a foley catheter overnight to help keep her bladder and kidneys healthy. Without the wonderful care she received at Le Bonheur, her story would be quite different. We are always thankful that Le Bonheur is in our own hometown and that the caring staff is waiting to care for either of our daughters whenever the need arises.

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Pediatric Subspecialists Included in Proposed Rule on Medicaid Payment "Bump Up"

Medicaid is an extremely important program for many kids, but access to quality health care through Medicaid can be difficult because of its low payment rates for physicians. Unfortunately, those low rates mean that in some communities, few physicians (including pediatric specialists) will accept Medicaid patients.  Fixing Medicaid payment rates is more complicated than its partner, Medicare. Medicare fees are established nationally while Medicaid fees are established by each state. In most – but not all – states, Medicaid providers are paid significantly less than they are paid under Medicare.

Recognizing this discrepancy, Section 1202 of the Affordable Care Act contained language to ensure that physicians who accept Medicaid patients in family medicine, general internal medicine, and pediatric medicine will receive the same pay rates that they would get for Medicare patients. This Medicaid payment “bump up” would last for two years beginning in 2013, and the federal government will pay the full cost of the increase.

Today, the Centers for Medicare and Medicaid Services (CMS) released its proposed rule to implement the two-year Medicaid payment increase to Medicare levels. Under the proposal, the federal government will send states $11 billion to increase the pay of physicians who provide primary care services to kids. The good news for kids’ health is that CMS has included pediatric subspecialists as eligible providers for this payment increase. It is great that the agency recognizes that specialists also provide primary care services, especially to children with serious or chronic medical conditions.

Specifically, CMS proposes “that all subspecialists within the specialty designations of family medicine, general internal medicine, and pediatric medicine as recognized by the American Board of Medical Specialties be eligible for increased payment…For example, a pediatric cardiologist would qualify for payment if he or she rendered one of the specified primary care services by virtue of that physician’s subspecialty within the qualifying specialty of internal medicine.”

That’s a longwinded way of saying that pediatric specialists qualify for the Medicaid payment “bump up.” In addition to being great news, it's also historical - it marks the first time Medicaid payments have been tied to Medicare rates in the program’s history.

However, the rule is not yet final – there is a 30-day comment period on this proposed regulation. After CMS receives public comments, it might make changes to the regulation. We will be doing everything we can, including submitting our own comments to CMS, to make sure that pediatric subspecialists stay in the final regulation so they can receive the increased Medicaid payments. We will also be working with our children’s hospital partners and other organizations that care about kids’ access to care to encourage them to express their support to CMS for the inclusion of pediatric subspecialists in the Medicaid payment increase.

We are extremely pleased that CMS recognized the role that pediatric subspecialists play in primary care and the importance of adequate Medicaid payment in ensuring kids’ access to care. We are going to make sure that they don’t lose sight of that during this next step of the regulatory process.

Welcoming Our Family Advocacy Day All-Stars

Hard to believe, but we’re less than three months away from our eighth annual Family Advocacy Day. We are expecting approximately 30 patients – or “All Stars”- and their families from 26 children's hospitals to join us in Washington, DC from July 23-25 to meet with legislators and discuss the importance of quality health care for America’s kids.

This is an unusual time in Washington. There’s no shortage of intense political rhetoric and posturing, but because it’s an election year, it’s difficult for Congress to get much accomplished. Health care is an especially toxic subject, with proponents and foes of the Affordable Care Act awaiting the Supreme Court’s decision on the law.

But sometimes all it takes is a good story to cut through the noise and help legislators understand the importance of a given issue. That’s why it’s more important than ever for these brave families to be joining us. Legislators must understand and recognize the important work that our hospitals are doing to keep kids healthy, despite the current political climate.

Kids like Ann and Mary from Memphis, two sisters born with very different medical conditions who both received treatment at Le Bonheur Children’s Hospital in Memphis, TN. Or seven year-old Osvaldo from Manassas, Virginia, who was diagnosed at 10 months old with spastic quadriplegia cerebral palsy and receives treatment at HSC Pediatric Center in Washington, DC. These kids could not have received the kind of specialized treatment they needed at an adult hospital. We’re thrilled that they and many other kids will be coming to Washington to tell their story. (You can read about a new children’s hospital All-Star every week by visiting our Family Advocacy Day All-Stars blog.)

Once again this year we will be joined by Max Page from the Children's Hospital Los Angeles. Max is better known as “Little Darth Vader” from the 2011 Volkswagen Super Bowl commercial. He was a wonderful advocate and motivational speaker last year, and we’re thrilled that he and his family will be joining us once again.

And we need your help as well. As we get closer to our event in July, we’ll be posting information on ways you can get involved in Family Advocacy Day. From joining us on Facebook, following us on Twitter and posting your thoughts using the hashtag #FAD12, to writing your members of congress in support of our All-Stars, we’ll have plenty of ways to make your voices heard as we get closer to July 23.