From the President and CEO

David Alexander, MD, is a pediatrician and president and CEO of the Lucile Packard Foundation for Children's Health. One of the Foundation's key goals is to improve the system of care for children with special health care needs. In these blog postings and radio interviews, Dr. Alexander discusses various aspects of the system of care.

 

New Health Benefit Exchange Must Consider
Children with Special Health Care Needs

One of the main accomplishments of health care reform was creating the opportunity to expand health care coverage to the uninsured. The Affordable Care Act contains provisions for states to design Health Care Exchange programs to offer insurance to individuals and families with low or middle incomes. 

California emerged as a leader among states and quickly passed enacting legislation just six months after Congress passed the health care reform law. The newly created California Health Benefit Exchange Board has begun meeting to develop benefit packages.

The Lucile Packard Foundation for Children's Health recently wrote to this five-member, appointed board offering to serve as a resource on issues pertaining to children with special health care needs and their families. The Foundation believes it is essential in these early stages of Exchange development to draw the board's attention to the unique challenges and requirements of this population of children. We want to ensure that the benefit packages created by the Exchange provide access to the full array of health care services necessary to provide appropriate care for those with complex conditions. We also want to monitor how these benefits will intersect with other publicly funded health programs, including Medi-Cal, Healthy Families, California Children's Services, and others.

As part of the implementation of the new law, the federal Department of Health and Human Services  (HHS) sets the requirement for the types of benefits that must be included in the Exchanges. At present, HHS has not issued its proposed rule. However, we will encourage California policymakers to offer benefits that will go beyond the basic requirements in the rule, if necessary, to optimize outcomes for these children.   

A relatively small proportion of California's children with special health care needs will be covered under the Exchange. However, the creation of new benefit packages offers an opportunity for developing a high quality, cost-effective model to serve these children. In addition, the Exchange has the potential to improve the market to support high-quality health plans and improve benefit packages for children under both public and private plans.
  
As the board develops its plans, we will continue advocating for inclusion of the particular needs of children with chronic and complex conditions in its deliberations.

We will report on our progress to members of the California Collaborative for Children with Special Health Care Needs. Please take a minute to learn more about our Collaborative and register to be a part of our ongoing advocacy work.

Posted August 10, 2011

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A Looming Threat to Public Insurance Programs for Children with Special Health Care Needs

Negotiations now under way in Washington, DC, regarding the U.S. debt ceiling could have a catastrophic effect on some of California's children with special health care needs and their families.  

Many children in our state depend on public health insurance programs to meet all or part of their health care costs, through Medi-Cal (California's Medicaid program) or Healthy Families (California's State Children's Health Insurance program). The State Flexibility Act, currently under debate in Congress in conjunction with the debt negotiations, would reduce spending and allow states to make cuts in eligibility for these vital programs. Potential scenarios for California could include complete elimination of Healthy Families, and limits placed on the number of children eligible for Medi-Cal.

Such changes would have a particularly negative effect in California, where more than a third of California's children with special health care needs already have insurance that is not adequate to meet their requirements, according to Children with Special Health Care Needs: A Profile of Key Issues in California, a report commissioned by our Foundation. Our state ranks 46th out of the 50 states on adequacy of insurance for children with special health care needs, the report notes. 

The Medicaid and Healthy Families programs have contributed substantially to improving the health and well being of children, and these programs are especially critical for children with complex and chronic conditions.  A new study from Georgetown University's Center for Children and Families documents how much is at stake if these programs are cut or lost. Without insurance, children may lose access to primary care, specialists, early intervention programs, or preventive services that help keep their conditions from worsening. Medicaid also helps many children live and be cared for in their homes and communities rather than in institutions.

Attempts to alter these essential public insurance programs have been made before. This time around, however, the crisis is so severe that some supporters in Congress are pessimistic. In a recent Wall Street Journal article, Senator Jay Rockefeller (D-WV), a longtime Medicaid advocate said, "There has been an unsettling silence around Medicaid even from members of my own party." 

As the negotiations about reducing the national debt proceed, it is imperative that we add our voices to the debate. Let your Congressional representatives and the Obama Administration know what it means for children and families to lose access to the health care they deserve.

You can find your representatives at http://www.govtrack.us/congress/findyourreps.xpd, or call
(202) 225-3121 for the Capitol switchboard and (202) 456-1414 for the White House. Ask them to protect Medicaid and the State Children's Health Insurance Program.

I also encourage you to join the new California Collaborative for Children with Special Health Care Needs, a statewide group developed by our Foundation that will be working toward a better system of care for children in California with special health care needs.

Posted July 15, 2011

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Update: California Collaborative for Children with Special Health Care Needs

In November 2010, our Foundation announced the formation of the California Collaborative for Children with Special Health Care Needs. Over the past few months, we have been in the development phase, and now I'm pleased to let you know that Janis Connallon has joined our staff to manage the work of the Collaborative.

Janis is an experienced health policy advocate. Most recently, she spent eight years as policy coordinator for Family Voices. Prior to that, she was national policy coordinator for the National Policy Center on Children with Special Health Care Needs at the Johns Hopkins School of Public Health.
The Collaborative is a broad-based statewide partnership that has been created to advocate for improving the system of care for children with special health care needs, their families and the providers who serve them.

If you are interested in participating in the Collaborative, please sign up here and indicate your areas of interest.

You also may want to review the work that the Foundation has done to date toward improving the system of care for children with special health care needs. Read about our investments, convenings and publications at www.lpfch.org/cshcn.

Posted June 1, 2011

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Federal Budget Poses Threat to Future Training for Pediatric Residents

What can be more troubling for families of children with special health care needs than waiting for weeks, or even months, for a child to be seen by a pediatric specialist? In California, and throughout the nation, these much-needed specialists are in increasingly short supply.

Since 1999, the federal government has provided bipartisan support for Children's Hospital Graduate Medical Education (CHGME), a program that supports physician training at independent children's hospitals, including Packard Children's. This successful program is essential to increasing the ranks of pediatricians and pediatric specialists, yet funding for CHGME has been removed from the President's proposed 2012 budget.  

Elimination of CHGME would have serious consequences for all families and children, not only those with special needs. Independent children's hospitals comprise less that 1 percent of all hospitals, but they train more than 40 percent of the country's pediatricians, 43 percent of pediatric specialists, and most pediatric researchers.

The loss of pediatric specialists would have a particularly devastating effect on children with special health care needs, who frequently have multiple conditions that require care from a range of specialists.  

Prior to 1999, independent children's hospitals did not receive funds for teaching. Although CHGME addresses this issue, children's hospitals still must seek regular renewal of funding for the program, unlike other hospitals, which receive training funds through Medicare. While the immediate issue is maintaining current funding for CHGME, it also is important to address the need for stable ongoing funding for pediatric graduate medical education.   

Pediatricians and pediatric residents, hospital staff and families across the nation will gather this week for local days of action with the theme "Stand For Kids – Protect Children's Health Care."  Packard Children's event is scheduled for April 27. Information is available at http://med.stanford.edu/ism/2011/april/5q-chamberlain-0411.html

In the 2010 budget, the CHGME program provided $301 million to freestanding children's hospitals in 30 states. We urge the Obama Administration and Congress to restore this relatively small budget item that would have such a profound effect on the health of our country's children.

Posted April 25, 2011

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Limitations of State Child Health System
Have Particularly Strong Impact
on Children with Special Needs

On Feb. 2, the San Francisco Chronicle reported on a Commonwealth Fund study that analyzed the performance of each state's health care delivery system for children. California ranked near the bottom -- 44th in the nation -- and was cited in particular for its weakness in delivering affordable health care for kids. 

As Governor Brown and the Legislature contemplate additional cuts in services, this study serves as a timely reminder that the health care system for California's children already is far from ideal. Further reductions may jeopardize the health of millions of our children.    

Nowhere are the limits of the system felt more keenly than by the state’s 1.4 million children who have special health care needs. An analysis recently commissioned by our Foundation found that California ranks last in the nation on an index that assesses whether these children have adequate health insurance, receive basic preventive care, and have medical care that is comprehensive, ongoing and family-centered.

Weaknesses in the health care system can have profound effects on the lives of these children and their families. For example, California's exceptionally low reimbursement rates for doctors and hospitals that accept MediCal have resulted in a severe shortage of pediatric sub-specialists. This gap in care can affect not only children with special needs, but also any child who has need for a sub-specialist, such as an orthopedist or a pediatric neurologist.    

Limitations on insurance coverage mean that families of children with special needs must shoulder large financial burdens, our study found. Co-pays are more frequent, and ongoing out-of-pocket costs for families can include various therapies, home health care, prescription drugs, medical equipment, and specialized dental services.    

The current patchwork system of care also has a substantial effect on the state's workforce and economy. Our study found that the parents of nearly 24 percent of children with special health care needs reported having to stop work or cut back on their hours because of their children's requirements and the lack of trained day care providers.   

As the state's resources become ever more scarce, it is increasingly important that we work together to find ways to improve our system for children with special health care needs. These are the children who utilize the majority of the state's resources for child health. If we can develop a system that works for them, all children will benefit.

I hope you will consider joining our new California Collaborative for Children with Special Health Care Needs, which will work toward developing a system of care that can support these children and their families on a consistent and sustainable basis.

Posted February 22, 2011

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California Ranks 44th Nationally on Child Health System Performance

A just-released Commonwealth Fund study, The State Scorecard on Child Health System Performance, reports that California ranks 44th in the nation on a scorecard composed of 20 indicators measuring health care access, affordability of care, health system equity, and other issues.

The report assessed some indicators regarding children with special health care needs, and these new rankings echo the findings of a related report that was released recently by the Lucile Packard Foundation for Children's Health. Our study found that California ranked worst in the nation on a composite index that measures whether children with special health care needs have adequate health insurance, receive basic preventive care, and receive medical care that is comprehensive, ongoing and family-centered.

The two studies together serve as a reminder that the system of care as it currently exists is not working well for California children, particularly those with special health care needs. The California budget crisis only exacerbates the situation, so it becomes increasingly imperative for us to find innovative ways to preserve vital services for these highly vulnerable children.

The Commonwealth Fund study reiterates data that were highlighted in our report, including the fact that California ranks 49th in whether children with special health care needs had problems receiving medical referrals when needed. The state ranked 31st on children with special health care needs whose families received all needed family support services.

If you are interested in addressing these issues, please consider joining our new California Collaborative for Children with Special Health Care Needs.

Posted February 3, 2011

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Children with Special Health Care Needs:
A Call to Action

Approximately one in seven children in California has a special health care need -- that's 1.4 million children. Yet our state ranks last in the nation on a minimum quality of care index that assesses adequacy of insurance, provision of basic preventive care, and meeting minimal criteria for care that is ongoing, comprehensive, coordinated, and family-centered.

This striking finding comes from a just-released study, Children with Special Health Care Needs: A Profile of Key Issues in California, commissioned by our Foundation and prepared by Dr. Christina Bethell and her colleagues at the Child and Adolescent Health Measurement Initiative (CAHMI).

The researchers also found that California ranks at or near the bottom nationally on numerous other measures, including transition to adult health care, stress among parents, and receipt of needed mental health services.

Such troubling findings will come as no surprise to California families who are caring for a child with special needs, or to the thousands of individuals throughout the state who work with, and on behalf of, these children and their families. The roadblocks that prevent development of a high-quality system of care are longstanding, complex, and difficult to overcome.

Here at the Foundation, we believe that these findings signal that the time has come to join forces in a new way to bring about broad and lasting change. For the past two years we have been focusing our efforts on improving California's system of care. We have convened experts -- both providers and consumers -- to develop a model for a higher quality care system.

Now, we are launching the California Collaborative for Children with Special Health Care Needs to create a shared agenda and to advocate for changes that bring the system closer to this model.

A key goal of this ongoing, statewide Collaborative will be to look beyond specific organizational issues and speak with one voice to decision-makers about the need for a more effective and efficient system for all children with special needs. The Collaborative will not replicate the many valuable efforts under way throughout the state, but will offer a unique opportunity for a cross-system partnership that can assemble the critical mass necessary to bring about significant change.

Collaborative members will include patients, families and caregivers, providers, insurers, disease-specific advocacy organizations, educators, researchers, and public and private agencies. Members will share information and will address issues that matter to all of these constituencies, such as adequacy of insurance, better access to medical specialists, education primary care providers on special needs, ethnic and income disparities; enhancing support for families, and smoothing the transition to adult health care.

The Foundation is committed to working with others on a long-term basis to bring these issues to public attention and to achieve results. We are committing staff and resources. I hope you will sign up now to receive information about the Collaborative as it develops.

Posted November 17, 2010

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Candidates Respond to Survey Question
Regarding Children with Special Needs

The system of care for children with special health care needs obviously is greatly influenced by decisions made in Sacramento and Washington, D.C. Given our Foundation's interest in improving the system of care, we posed a question about special needs in a recent survey of a group of candidates running in California's Nov. 2 election.

We provided a fact sheet describing California's low ranking compared to other states in caring for children with special needs, and asked this question:

Statewide, 10 to 15 percent of families have a child with a special health care need -- a chronic physical, developmental, or behavioral condition that requires more than routine health and related services. As the fact sheet illustrates, California ranks last in the nation on a minimum quality-of-care index for children with special health care needs. If elected, how would you address this situation?

The surveys were sent to major party candidates running for Governor, Lieutenant Governor, Insurance Commissioner, and Superintendent of Public Instruction. We also sent surveys to the California U.S. Senate candidates, and to candidates in open or competitive U.S. House and California Assembly and Senate races.

Some candidates who responded expressed a commitment to working with families to improve the system of care. You can read the responses to the question on special needs on our website.

The Foundation does not endorse candidates. Our goal with the survey is to raise the awareness of policymakers and potential policymakers about children's health in general and children with special health care needs in particular. If you are interested in policies that affect children, please review the responses and let the candidates know your thoughts.

Posted October 18, 2010

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Kids' Admission to Specialty Care Hospitals Strongly Influenced by Non-Medical Factors

A recent study from Stanford University points out a troubling trend: Factors other than medical need appear to be influencing whether California children with chronic conditions are treated in hospitals with special expertise in caring for children.

On the positive side, the study provides evidence that the majority of chronically ill children who require hospitalization are admitted to these specialty care centers. More disturbing is the fact that the data suggest that factors other than medical need play a major role in influencing where children are hospitalized. Low-income children with public insurance generally are cared for in a children's specialty care hospital. Surprisingly, though, children who are privately insured are significantly less likely to be treated at these pediatric centers of excellence.

In addition, other non-medical factors such as age, ethnicity, income level and living close to a specialty care hospital also influence where a child is treated, the study reports.

These findings are worrisome because a range of studies suggest that outcomes improve when children with serious or rare conditions have access to physicians and hospitals with special expertise.

The Stanford study analyzed pediatric hospitalizations for children ages 0 to 18 years at the time of admission in California between 1999 and 2007, using data from the Office of Statewide Health Planning and Development (OSHPD).

The authors recommend greater scrutiny of clinical practices and child health policies that shape patterns of hospitalization of children with serious chronic disease. Through our work regarding children with special health care needs, our Foundation is advocating for a system in which all children are able to receive the highest-quality health care when and where they need it.

Posted October 13, 2010

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"Underinsurance" Hinders Care for Many Children with Special Needs

The good news is that most of California's children with special health care needs have health insurance. Unfortunately, that's only part of the story. For nearly 40 percent of these children, their insurance coverage is inadequate to meet their needs, and low reimbursement policies make it extremely difficult for their families to find physicians and other care providers. As one parent of a special needs child said in a recent article from New America Media (NAM), "I called every therapist from Oakland to San Leandro, but none of them is willing to accept him."

The NAM article, by Vivian Po, recounts the experiences of several Bay Area families, whose children have diagnoses that include cerebral palsy, Down syndrome, autism, Asperger's syndrome, and epilepsy. The story highlights how program cuts brought about by California's staggering budget deficit are worsening the underinsurance problem and taking a toll on families.

The issue is, of course, not limited to California. A national study published online March 8 in the journal Pediatrics notes that adequacy of insurance is strongly related to where a child lives, and that disparities exist within and among states. The authors conclude that legislation guaranteeing insurance for all children is important, but not sufficient. "If policymakers are interested in ensuring equitable treatment in the health care system for children with special health care needs, then policy initiatives aimed at reducing underinsurance and increasing uniformity of coverage across states are also needed," they write.

A focus area for our foundation is improving the systems of care for kids with special needs, and adequate insurance must be a top priority.

Posted March 19, 2010

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Lack of Pediatric Specialists Delays Care, Puts Kids with Special Needs at Risk

Journalist Vivian Po, of New America Media, has written an article that focuses attention on a critical issue for children with special health care needs: long waits to be seen by a pediatric specialist.

Many kids with special needs have multiple medical issues, and require the attention of one or more specialists with expertise in caring for children. California, like the rest of the United States, suffers from a severe lack of these specialists. Last year, the Children’s Specialty Care Coalition, a non-profit association, surveyed the medical directors from nine California medical groups, representing 2,000 pediatric specialists. Results of that survey, released in December, indicated that the waiting time for a specialist is between 16 and 114 days. Children with diabetes, for example, must wait 56 days to see a pediatric endocrinologist, and children with heart conditions wait 39 days before they can see a pediatric cardiologist.

Delaying needed specialty care for children, or forcing them to be seen in emergency rooms, is inadequate medical care, and can put lives at risk. The dearth of pediatric specialists results from several factors, most notably poor reimbursement for physicians who treat children, and extended training requirements that leave young physicians deeply in debt when they begin to practice.

Our foundation is working toward improving the systems of care for kids with special needs, including finding ways to provide more specialty care.

Posted March 8, 2010