By Michelle Diament
Disability Scoop
June 4, 2012
Schools and health insurers have been playing a game of "hot potato" in an effort to avoid responsibility for paying for Applied Behavioral Analysis (ABA) for children with diagnoses of Autism Spectrum Disorders. A recent decision by the U.S. Office of Personnel Management (OPM), responsible for managing federal employee benefits, has ended the game, and the "potato" has landed in the hands of health insurers. Based on a review of the evidence for ABA therapy, the OPM determined that ABA is a medically necessary service, not an educational one. Starting in 2013, government health plans will include ABA as a covered service.

By Ginny Puddefoot
Say Ahhh! A Children's Health Policy Blog
May 25, 2012
Currently, children in foster care receive Medicaid benefits through age 18, with some states opting to continue eligibility up to the youth's 21st birthday. In January 2014, a provision of the Affordable Care Act (ACA) will allow young adults served by the foster care system to continue their Medicaid benefits through age 26. This provision levels the playing field for young adults that have aged out of foster care. They will be able to access health benefits as they embark on their adult lives, much like young adults whose parents can include them on their family's health plan. However, young adults aging out of the foster care system in the next 18 months may continue to experience gaps in coverage. In this blog post, Ginny Puddefoot from the Children's Partnership proposes strategies to bridge the gap and ensure young adults exercise their option to re-enroll in Medicaid coverage, even after they leave the foster care system. Puddefoot wants to spread the word - literally. She encourages advocates to create fact sheets and other youth-centered materials to share with organizations that serve youth and families: child welfare agencies, foster care provider networks, school districts, community colleges, and other community venues, such as libraries. This will be a start towards building relationships with individuals and organizations that can help former foster youth re-enroll in Medicaid.

By Reed Abelson
New York Times
May 23, 2012
A new study, published in the health policy journal, Health Affairs, examined the benefit packages of individual health plans and found them to be less generous than employer-sponsored plans. Researchers also found that more than 50% of the individual health plans in today's insurance market do not provide comprehensive health benefits, with many excluding prenatal, childbirth, and postpartum care. In addition, many individual plans do not limit a consumer's out-of-pocket expenses, which the study reports can be as high as $27,000 per year for families that use a significant number of medical services or particularly expensive ones. Beginning in 2014, the Affordable Care Act (ACA) will mandate all individual and small group health insurers, in and out of the State Health Exchanges, to provide Essential Health Benefits, which will improve the benefit packages offered by independent health plans. In addition, the ACA will provide consumer protections by limiting families' out-of-pocket expenses and eliminating exclusions for individuals with pre-existing conditions. In response to these findings, this article quotes Sara Collins, a vice president of the Commonwealth Fund, as saying, "It really shows why the reforms in the Affordable Care Act are so necessary." Read the Fund's synopsis of this study, More Than Half of Individual Health Plans Offer Coverage That Falls Short of What Can Be Sold Through Exchanges as of 2014.

By Michelle Diament
Disability Scoop
May 29, 2012
The American Psychiatric Association (APA) plans to release the 5th revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in May 2013. This gives the APA, the American Association on Intellectual and Developmental Disabilities (AAIDD), and the Arc a year to get a handle on their differences regarding how each organization wants to list both the new "name" for the outdated "mental retardation" diagnosis and the proposed changes to the diagnostic criteria. The APA wants to use "intellectual developmental disorder" to emphasize an individual's functional level and to be consistent with the World Health Organization (WHO), which will use this term in the 2015 update of its International Classification of Diseases (ICD) guide. The APA also wants to give clinicians more flexibility in making a diagnosis. In the past, "mental retardation" was the only diagnosis that relied on an IQ test. While IQ will still be considered, the bright-line standard of IQ less than 70 will be changed to two standard deviations below average for the assessment tool used. The AAIDD and the Arc do not want to lose the bright-line IQ standard that is currently used for diagnosis. These two organizations also prefer the use of the term "intellectual disability," which, with President Obama's signing of Rosa's law in 2010, replaced the use of "mental retardation" in federal education, health, and labor laws. The APA is also collapsing Asperger's syndrome, childhood disintegrative disorder, and pervasive developmental disorder-not otherwise specified (PDD-NOS) into a single diagnosis of Autism Spectrum Disorder. Parents and advocates are concerned changes in the diagnosis criteria may make life more difficult for individuals with intellectual and developmental disabilities, because the eligibility criteria for needed services may not undergo a corresponding change.

Kingsdale: 'People Are Aware That There Are Huge Problems'
With Mary Agnes Carey and Jon Kingsdale
Kaiser Health News
June 4, 2012
While the country waits to hear the U.S. Supreme Court's verdict on the constitutionality of certain provisions of the Affordable Care Act (ACA) and the fate of the entire law, Kaiser Health News (KHN) is passing the time with a "what if" approach. In the first in a series of multimedia broadcasts, "Supreme Uncertainty: What's Next After The Court Rules," Mary Agnes Carey of KHN talks with Jon Kingsdale, a consultant whose focus is helping states and others plan and develop State Health Exchanges. Carey asked for his opinion about moving forward with health reform if:

1. The entire ACA is struck down; or
2. The Court rules against the individual mandate, but keeps the rest of the law intact.

Kingsdale thinks it is more likely that the Court will rule against the individual mandate, rather than strike the entire law. Kingsdale says health reform can still move forward without this provision. He reports that some states will be well positioned to open their Exchange by October 2013. The states that are working on developing functions of the exchange, like screening for Medicaid and Children's Health Insurance Program (CHIP) eligibility and tax credits, may need to opt for the Partnership Exchange option in order to be ready by the deadline. Other states have not moved forward with planning and development; it's likely those exchanges will not be ready on time. Check the progress of State Health Exchange activity as of May 17, 2012. If the Court strikes the entire law, Kingsdale says it's unclear what will happen to the provisions of the ACA that are already in effect and if Congress will work to keep any or all of them in place. Following the example of Massachusetts, states may also create their own legislation for an individual mandate. Watch the video or read the transcript.  

By Beverly A. Pringle, Lisa J. Colpe, Stephen J. Blumberg, Rosa M. Avila, and Michael D. Kogan
National Center for Health Statistics
May 2012
This data brief describes key findings from the 2011 Survey of Pathways to Diagnosis and Services. The Pathways survey represents a subset of the participants from the 2009/10 National Survey of Children with Special Health Care Needs. Researchers re-interviewed 4,032 parents and guardians that reported their 6 - 17 year old child had received a diagnosis of Asperger's disorder, Pervasive Development Disorder (PDD), or other autism spectrum disorder (ASD) to obtain a nationally representative sample. Findings include:

• Fifty percent of children in this study were age 5 or older before they were diagnosed with an ASD;
• A variety of primary and specialty providers made the diagnosis;
• More than half of the children used three or more health services, such as social skills training, behavioral interventions, speech and language therapy, or occupational therapy; and
• More than half of the children used one or more psychotropic medications.  

Office of the Assistant Secretary for Planning and Evaluation (ASPE)
U.S. Department of Health and Human Services
Do you need quick access to the number of young adults, age 19 - 25, with health insurance; the percent of employers that offer health insurance; the average premium cost for employer-sponsored health insurance; or the percent of families with high out-of-pocket costs for a family member with a chronic condition? These are just a few of the topic areas and data indicators available on the Health System Measurement Project website. Review the list of measures, interactive graphs, and access the data.

National Center for Health Statistics
May 2012
The National Center for Health Statistics (NCHS) has released the data files from the 2011 Survey of Pathways to Diagnosis and Services. These data, which include health care and diagnostic history, were collected from interviews with parents or guardians of children, ages 6 - 17, who currently have or were ever diagnosed with an Autism Spectrum Disorder, Intellectual Disability, and/or Developmental Delay. There is a Frequently Asked Questions document on the website; e-mail additional questions to slaits@cdc.gov.

By Mary Henderson and Neva Kaye
National Association for State Health Policy (NASPH)
May 2012
In 2005, the American Academy of Pediatrics (AAP) updated its policy about care coordination, stating, "Care coordination plays an essential role in ongoing efforts to integrate health and related systems of care for children and youth with special health care needs." One of its recommendations for ensuring effective care coordination was to have primary care, specialty providers, hospitals, community agencies, Title V programs, insurers, families, and others work together. This paper from NASHP takes this recommendation a step further. It highlights policies and practices in Arkansas, Illinois, Minnesota, Oklahoma, and Oregon that work toward improving care coordination not only within primary and specialty care, but also among systems of care, such as early intervention and other community services. These five states are participating in a three-year learning collaborative as part of the Assuring Better Child Health and Development (ABCD) III project.

Date: Thursday, June 21, 2012
Time: 12:00 noon - 1:00 p.m. EDT
You are invited to participate in this third 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 4 - Pathways to Coverage, and Section 5 - Covered Services: What will Medicaid and CHIP Pay For?  Participants on this webinar will learn about federal regulations for mandatory benefits and populations as well as optional coverage groups and services, EPSDT, waivers, and resources for learning more about the specifics of the Medicaid and CHIP programs in their state.

This is also an opportunity to hear how one Family-to-Family Health Information Center helps families, professionals, and others navigate pathways to coverage and covered services for children and youth with special health care needs.
 
Register for this webinar. Listen to recordings of first two webinars in this series.

Date: June 14, 2012
Time: 3:00 - 4:30 pm EDT
The National Association for State Health Policy (NASHP) is hosting a webinar about Health Homes, Section 2703 of the Affordable Care Act. Panelists will share lessons learned during their state's implementation of this option. Learn more about this webinar and register.

If you have suggestions for news items related to coverage and financing of care for CYSHCN please email Beth Dworetzky Catalyst Center Coverage editor and Catalyst Center Assistant Director by 12 noon on Friday.