Posts Tagged ‘CSHCN’

Celebrate 30 Years of Down Syndrome Awareness

October is Down Syndrome Awareness Month, a health observance sponsored by the National Down Syndrome Society.

This year’s observance celebrates 30 years of public awareness efforts by both highlighting the diverse accomplishments of individuals with Down syndrome and challenging stereotypes.

In California, about 1% of children with special health care needs have Down syndrome, according to ’05-’06 data.

See other data about children with special health care needs >>

Posted by kidsdata.org

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Roseville Boy’s Story Rings True for Many Families of Children with Special Health Care Needs

Sometimes a story can help make data seem more real – and that’s certainly the case with Justin Caldwell, a 12-year-old boy from Roseville, CA, who has been afflicted with dilated cardiomyopathy, or an abnormally enlarged heart, since he was eight months old. Justin now awaits a new heart transplant at Lucile Packard Children’s Hospital. His battle and that of his mother, Katie Caldwell, echoes that of many families who have experienced the economic and emotional stress of having a child with a special health care need.

While Justin is on standby for a heart transplant in Palo Alto, his mother remains at his side and has been unable to work at her job in Roseville. Unfortunately, the financial insecurity that Justin’s family is undergoing now is not uncommon for families of children with special healthcare needs.

2005-2006 data on the impact of a child’s special health care needs on parental employment shows that 24% of California parents of children with special health care needs had to cut back or stop working to care for their child. Similarly, 2007 data show that a higher percentage of parents of children with special health care needs report stress as a result of parenting (27%) than parents of children without special needs’ (13%).

See more about how special healthcare needs impact families in California >>

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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 by David Alexander, MD

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Allergies May Affect More Kids Than Thought — See Related CA Data for Kids with Special Needs

You may have seen the study released this week noting that nearly 6 million U.S. children have food allergies — more than some previous research suggested. According to this article in the Los Angeles Times, a recent study of 38,000 children, conducted by the Northwestern University Feinberg School of Medicine, found that many children suffer severe reactions from allergies, and that many are allergic to more than one food.

Among children with special health care needs in California, nearly half (48%) have allergies (of any type –  not only food), according to 2005-2006 data. For more data on California’s children with special health care needs, visit http://www.kidsdata.org/cshcn.

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New Test for Down Syndrome Raises Ethical Concerns

A recent AP article, “Comfort or Conflict: Earlier Down Syndrome Test,” explores the ethical challenges posed by a new type of DNA test for Down syndrome. In the near future, DNA tests for Down syndrome may be available as a simple blood draw, and the new tests could give parents accurate results earlier in the pregnancy than with amniocentesis or chorionic villus sampling (CVS).

The article notes that this new test raises complex ethical concerns, because a Down syndrome diagnosis before birth can “pose a difficult challenge for couples as they decide whether to continue the pregnancy,” according to Dr. Mary Norton, director of Perinatal Research at Lucile Packard Children’s Hospital.

A recent study concluded that advances in testing (and, thus, more options for would-be parents during pregnancy) have contributed to an 11 percent decline in Down syndrome births in the U.S. between 1989 and 2006, a time during which rates were expected to rise 42 percent.

In California, about 1% of all children with special health care needs have Down syndrome, according to 2005-06 survey data, the most recent time period for which data are available.

Posted by Jordan Handcox

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Another Look at Autism Diagnoses

A new report from the Centers for Disease Control notes that rates of autism and ADHD among children are on the rise.

Earlier this year, we wrote a blog post about 2010 special education data for school districts across California. In light of the just-released CDC study, that blog entry is re-posted below.


Originally posted Feb. 3, 2011

A few years ago, we published an issue brief, “Autism Diagnoses on the Rise,” that explored the steep climb in autism diagnoses across California. So what does the trend look like these days? About the same, it turns out. Newly released data from the California Department of Education show that the growth in special education students diagnosed with autism continues unabated, from roughly 17,500 California public school students in 2002 to nearly 60,000 in 2010.

As you dig deeper, however, some other trends emerge. First, while students with autism comprise a greater share of all special education students in California compared to roughly a decade ago (from about 3% of all special education students in ’02 to about 9% in ’10), numbers are on the rise for another diagnosis, too — “other health impairment.” The California Department of Education defines this as “having limited strength, vitality or alertness, due to chronic or acute health problems, such as a heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes.” Meanwhile, the percent of special education students diagnosed with a learning disability has dropped considerably, from 52% of all special education students in 2002 to 42% in 2010.

This Google animation, which uses data from kidsdata.org indicators, shows the relative growth/decrease in special education enrollments by the three conditions noted above. First click on the bar graph icon in the top-right, then press play in the bottom left.

We encourage our readers to provide some perspective on these trends. We do know that research shows that federal and state finance reform may be contributing to declining learning disability rates in California (and across the nation). As for autism, the Centers for Disease Control and Prevention says that whether the increases are “attributable to a true increase in the risk for developing ASD [autism spectrum disorders] symptoms or solely to changes in community awareness and identification patterns is not known.” Comments from users like you can help us illuminate what’s going on both locally and statewide, and provide broader perspective on the growth in autism diagnoses.

Posted by kidsdata.org

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A Closer Look at the Growth in Autism Diagnoses

A few years ago, we published an issue brief, “Autism Diagnoses on the Rise,” that explored the steep climb in autism diagnoses across California. So what does the trend look like these days? About the same, it turns out. Newly released data from the California Department of Education show that the growth in special education students diagnosed with autism continues unabated, from roughly 17,500 California public school students in 2002 to nearly 60,000 in 2010.

As you dig deeper, however, some other trends emerge. First, while students with autism comprise a greater share of all special education students in California compared to roughly a decade ago (from about 3% of all special education students in ’02 to about 9% in ’10), numbers are on the rise for another diagnosis, too — “other health impairment.” The California Department of Education defines this as “having limited strength, vitality or alertness, due to chronic or acute health problems, such as a heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes.” Meanwhile, the percent of special education students diagnosed with a learning disability has dropped considerably, from 52% of all special education students in 2002 to 42% in 2010.

This Google animation, which uses data from kidsdata.org indicators, shows the relative growth/decrease in special education enrollments by the three conditions noted above. First click on the bar graph icon in the top-right, then press play in the bottom left. 

We encourage our readers to provide some perspective on these trends. We do know that research shows that federal and state finance reform may be contributing to declining learning disability rates in California (and across the nation). As for autism, the Centers for Disease Control and Prevention says that whether the increases are “attributable to a true increase in the risk for developing ASD [autism spectrum disorders] symptoms or solely to changes in community awareness and identification patterns is not known.” Comments from users like you can help us illuminate what’s going on both locally and statewide, and provide broader perspective on the growth in autism diagnoses.

Posted by Andy Krackov

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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. See our website at http://www.lpfch.org/informed/cshcn/.

Posted by David Alexander, MD

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Families of Children with Special Needs
Bring Concerns to Doorsteps of CA Legislators

Although children with special health care needs account for only 10% of children in California, many of us know of or are affected by a  child who is chronically ill. The Family Voices Annual Health Summit and Legislative Day brought together families of chronically ill children for two days of story sharing, education, and rallying at the state Capitol to help raise awareness among lawmakers about this unique population.

On the first day, parents learned about current budgetary and legislative issues affecting their child’s system of care, as well as how to become fierce – yet effective – advocates for their child’s needs. They spoke with each other about their own experiences with insurance companies, pediatricians, school IEPs, and more. Their issues were summed up by one mother who lamented “I’ve been working within this system [of care] for over 20 years, and I’m just now starting to get it … it’s that complicated.” Her story was echoed throughout the day by other parents hoping for an opportunity to share their own story with someone who could help.

After a day of education and preparation, parents went to the Capitol to share their stories with California legislators. Some parents carried envelopes filled with receipts from the myriad of drugs they buy regularly for their child; others toted collages of their children, armed and ready to provide faces to match their stories of struggle. Regardless of their methods, it was clear these parents had one thing in common – they all wanted their voices, and their children’s voices, to be heard by someone with the power to make change happen. This kind of persistent, genuine advocacy is an important component to help legislators understand the impact their everyday decisions have on these children and their families.

Posted by Jordan Handcox

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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. See our website at http://www.lpfch.org/informed/cshcn/.

Posted by David Alexander, MD

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