Catalyst Center Quarterly
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Summer 2012
Message from the Catalyst Center


Dear ,


In this issue of Catalyst Center Quarterly, we pay tribute to two historic policy decisions that have made it possible for individuals with disabilities to receive the services they need to safely live at home and participate in community life as much as possible, rather than be confined to segregated settings, such as hospitals, institutions, and other long-term residential facilities.

In 1982, Congress created section 134 of the Tax Equity and Fiscal Responsibility Act (TEFRA), which many people know as the Katie Beckett state plan amendment (SPA). This type of Medicaid SPA creates a pathway to eligibility for children with complex health needs who are younger than 19 years old and who require an institutional level of care. It allows them to enroll in Medicaid - regardless of family income - so they can receive the medical services they need to live at home. Katie Beckett, the girl for whom this SPA was named, followed her mother Julie's example by becoming a powerful advocate for all individuals with special health care needs. She was also a valued colleague to the many people working on behalf of children and youth with special health care needs, a mentor, friend, and hero to the families of the more than 500,000 children with complex health needs who have the option of living at home, going to school, and taking part in community life. Katie died on May 18, 2012. The Catalyst Center team, along with everyone else whose lives Katie touched, continues to mourn the loss of this dynamic young woman, but her legacy lives on. We invite you to read more about her contribution in the recent Quarterly article "Making it Possible to Care for Children with Significant Disabilities at Home."

June 22, 2012 was the 13th anniversary of the U.S. Supreme Court's Olmstead decision, which upheld the "integration mandate" in Title II of the Americans with Disabilities Act (ADA). This guarantees the rights of individuals with intellectual disabilities to live at home with appropriate supports, rather than be forced to live in institutional settings. In honor of this milestone, the White House issued a press release that highlights the Obama Administration initiatives that support Olmstead and further the civil rights of individuals with disabilities to live in community-based settings. These include:
  • Continued efforts by the Civil Rights Division of the Department of Justice to enforce the ADA and Olmstead;
  • Implementation of Section 811, a Project Rental Assistance Program for adults with disabilities who meet certain income criteria;
  • Creation of the Administration for Community Living.   

The Catalyst Center Team
Art1Your Questions on the Essential Health Benefits Bulletin Answered


In every issue of Catalyst Center Quarterly, we tackle a current topic related to the Affordable Care Act (ACA) and children and youth with special health care needs CYSHCN. Below is a compilation of several questions that we've been asked by stakeholders regarding the Essential Health Benefits Bulletin issued by the U.S. Department of Health and Human Services on December 16, 2011, and its possible impact on CYSHCN.

 Read on...  

Art2The Wardyga Family Story: Justice for Jason


The second anniversary of the Affordable Care Act (ACA) forced me to reflect on some personal and painful experiences that followed the births of my full term twin sons, 26 years ago. I never imagined that landmark legislation like the ACA would pass in my lifetime, after years of...

Read on...  


Your Questions on the Essential Health Benefits Bulletin Answered

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Art3New Brief: Risk Adjustment and Other Financial Protections for Children and Youth with Special Health Care Needs...

In September 2011, an expert panel met to discuss the issues of risk adjustment in health care coverage for children and youth with special health care needs (CYSHCN). This one-day meeting was sponsored by the Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services and facilitated by the Catalyst Center at the Boston University School of Public Health, with logistical support provided by John Snow, Incorporated. This report provides an overview of the importance of risk adjustment strategies for CYSHCN and their associated challenges, risk adjustment models, how costs are distributed across CYSHCN, and other financial protections for CYSHCN in capitated or global payment systems.
Read the report, download the resources from the meeting, and see the list of participants in the Expert Workgroup Meeting.
Art4Catalyst Center Medicaid/CHIP Webinar Series


Building partnerships and working together is one way to maximize both the resources and expertise of the multiple agencies and systems of care that serve children and youth with special health care needs (CYSHCN) and their families. Medicaid, the Children's Health Insurance Program (CHIP), and Title V are important sources of coverage and financing of care for CYSHCN. In 2009, Title V programs served 1.9 million children and adolescents with disabilities, chronic illnesses, and special health care needs; together, Medicaid and CHIP covered 36% of all CYSHCN.   Understanding the funding, eligibility criteria and populations served, the services provided, and the vocabulary used in each of these three systems is an important first step towards facilitating partnerships to improve coverage and financing of care for CYSHCN.


With funding from the Maternal and Child Health Bureau, the Catalyst Center and the National Academy for State Health Policy (NASHP) have pooled their expertise to create Public Insurance Programs and Children with Special Health Care Needs: A Tutorial on the Basics of Medicaid and the Children's Health Insurance Program (CHIP). The goal of this user-friendly tutorial, specially written for Title V, Medicaid and CHIP staff, family leaders, public health/maternal and child health professionals, and interested others, is to increase "public health literacy," get everyone to "speak the same language," and identify opportunities for effective partnerships.

To introduce the Tutorial, the Catalyst Center and the Maternal and Child Health Bureau are hosting a five-part webinar series to help acquaint users with this new resource and provide examples about ways to use it in your work on behalf of CYSHCN. Each webinar provides an overview of several sections of the tutorial. During open discussion, which is part of each webinar, participants have an opportunity to learn from each other by sharing how they have used the information to build partnerships with Title V, Medicaid/CHIP staff, family leaders, and other stakeholders to improve health care coverage and financing for CYSHCN.

The first three webinars are archived on the Catalyst Center website. We invite you to join us for the remaining two webinars.

Webinar 4: Medicaid & CHIP: Funding, Service Delivery Models, and QI Measurement
Wednesday, July 18th, 2012
12:00 noon - 1:00 p.m. EDT


Webinar #5: What Changes Can I Expect from the Affordable Care Act (ACA) and How Do I Make the Case for Partnership in My State?
Wednesday, September 19th, 2012
2:00 - 3:00 p.m. EDT

If you have questions about the webinar series, email Meg Comeau at [email protected].
AAnnouncements and Events

Kaiser Health News
Date: June 28, 2012
Time: 4 p.m. EDT
Any day now, the U.S. Supreme Court is expected to announce its rulings on the Affordable Care Act (ACA). Kaiser Health News and SCOTUSblog reporters will hold a live video analysis at 4 p.m. on the day of the ruling.

UPDATE: According to the legal experts at SCOTUSblog, Thursday, June 28th will be the last day of the current U.S. Supreme Court term. They expect the Court to issue a decision in the health care cases that day. They will begin live blogging at 9:00 a.m. EDT. Read real time updates on the ACA decisions as they are announced from the Bench.

Date: Wednesday, July 18th, 2012
Time: 12:00 pm - 1:00 p.m. EDT
You are invited to participate in this fourth in a five-part webinar series about the Catalyst Center's latest technical assistance tool Public Insurance Programs and Children with Special Health Care Needs: A Tutorial on the Basics of Medicaid and the Children's Health Insurance Program (CHIP). This webinar will cover:
Section 6: Financing: How Do Medicaid and CHIP Dollars Flow?
Section 7: Service Delivery Models: How Do States Deliver Health Care Services to Children Enrolled in Medicaid and CHIP?
Section 8: Quality Measurement and Improvement
Listen to recordings of the one or more of the first three webinars.
MediaHighlightsMedia Highlights

By Julie Appleby
Kaiser Health News
June 11, 2012
While the country waits to hear the U.S. Supreme Court's verdict about the Affordable Care Act (ACA), three major health insurers have rendered their own decisions about five of the most popular provisions of the health care reform law. UnitedHealthcare and Humana have announced they will:
  • Allow parents to continue to include their young adult children on their family health plan up to age 26;
  • Continue to provide preventive health services without charging co-payments;
  • Maintain a third-party appeals process; 
  • Not rescind (cancel) coverage retroactively; 
  • Not reinstate lifetime benefit caps.  
Aetna has followed suit, although the company did not specifically address the issue of lifetime limits on coverage or cancellation of policies. These three health insurers did not address the ACA provision that prohibits denial of coverage for children with preexisting conditions, which has been in effect since September 2010. There was also no mention about extending coverage to adults with preexisting conditions, which is slated to go into effect in 2014.

Senators Urge Move Away From 'Mental Retardation'Go to link
By Michelle Diament
Disability Scoop
June 19, 2012
The Children's Mental Health Accessibility Act, introduced by Senators John Kerry (D-MA) and Charles Grassley (R-IA), aims to expand Medicaid 1915(c) waivers to provide mental and behavioral health supports to young people at home and in the community, rather than in inpatient psychiatric facilities. This bill also proposes to replace the use of the term "mental retardation" with "intellectual disability" in programs overseen by the Social Security Administration (SSA). This will align the language used by SSA with other federal health, education, and labor laws, which have used "intellectual disability" since President Obama signed Rosa's Law in October 2010. Forthcoming revisions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the International Classification of Diseases (ICD) will also use "intellectual disability." This article quotes Senator Kerry as saying, "This is an effort to remove outdated stigmas and empower parents to help the children they love."

By Shaun Heasley
Disability Scoop
June 18, 2012
Desperately seeking financing of care and coverage for autism services, families in search of relief are moving to states with autism mandates for private health insurance. Before they pack and say goodbye to extended family and friends, advocates encourage families to also learn about a state's special education funding and Medicaid eligibility and covered services, which long-term may offer more comprehensive supports for children and youth with autism spectrum disorders than just an autism mandate.

See the list of states with autism private insurance mandates. Visit the Catalyst Center's Family Resources page for a list of organizations that help families and professionals learn about Medicaid and other health care coverage and financing options in each state.

By Joan Alker
Say Ahhh! A Children's Health Policy Blog
June 18, 2012
Over the past 10 years, Medicaid and the Children's Health Insurance Program (CHIP) have helped decrease the number of uninsured children. At the same time, more and more parents have lost their insurance due to high rates of unemployment or illness. Working parents can also be uninsured because many employers do not offer insurance or the premiums are unaffordable. The American Academy of Pediatrics (AAP) recognizes that "the health and well-being of infants, children, and adolescents depend on their parents..." Joan Alker, co-director of the Georgetown University Center for Children and Families, agrees, noting insurance is as important for parents as it is for their children. In this blog post, she writes, "...the well-being of children is highly dependent on the well-being of their parents." Having health insurance is one way to ensure parents receive the medical care they need to stay healthy so they can take care of their children. Alker, her colleagues at the Center for Children and Families, and researchers at the Urban Institute, estimate the Medicaid expansion provision of the Affordable Care Act (ACA) will provide coverage to about 4.7 million parents when it goes into effect in 2014. Read their issue brief Medicaid Coverage for Parents under the Affordable Care Act for data about the number of parents who will gain coverage and the policy implications of implementing this provision of the ACA.

Health Care Disparities Exist for Children with Autism Spectrum DisordersGo to link
By the Kansas City infoZine
June 13, 2012
This article summarizes the findings of the literature review, Systematic Review of Disparities in Health Care for Individuals with Autism Spectrum Disorders in the United States, by Megan Tregnago and Nancy Cheak-Zamora. Children with Autism Spectrum Disorders (ASD) often have co-occurring conditions, such as seizures, sleeping disorders, and stomach, digestive, and intestinal problems. They may be hospitalized frequently and take medications. These are just some of the reasons why children with ASDs use more health services than children with other chronic health needs do. As expected, insurers paid more claims for children with ASDs and parents had higher out-of-pocket costs than other families raising children and youth with special health care needs. Despite the increased service utilization rate and high costs, the researchers found that children with ASDs had less access to specialized care and that the quality of care was not equal to care provided to children with other special health care needs. The authors suggest that access to a medical home, with a focus on care coordination and involvement of families as partners in decision-making, would improve quality of care for children with ASD. Cheak-Zamora is quoted as suggesting, "Insurance companies should develop policies that will cover the treatments children with ASD need."  
Read the abstract of this article, published in the January 2012 issue of Research in Autism Spectrum Disorders.
NNews You Can Use from Our Partners

Data Resource Center for Child and Adolescent Health
June 21, 2012
National and state level data for 21 conditions are now available on the Data Resource Center (DRC) website. You can generate condition-specific reports for the Maternal and Child Health Bureau (MCHB) outcome measures, child health indicators, and more. Read the DRC's new data brief, Exploring Health Conditions in the 2009/10 NS-CSHCN.
The Catalyst Center is funded under cooperative agreement #U41MC13618 from the Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services. Lynda Honberg, MHSA, MCHB/HRSA Project Officer. The contents of Catalyst Center Quarterly are solely the responsibility of the authors and do not necessarily represent the views of the funding agencies or the U.S. government.