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Network News

Member Profile
There are no difficult families. There are only families in extremely challenging situations. That’s Network member Karen Wayman’s mantra. As director of family-centered care at Lucile Packard Children’s Hospital, Wayman helps families work as partners with their health care team so that their child receives the best possible care. She also collaborates with hospitals and pediatric units around California to share strategies, information and resources. Learn more about her work.

California Policy

New Study: Finding Dental Care under Medi-Cal
Finding a dentist who accepts Medi-Cal can be a daunting task, particularly for families of children with special health care needs. A new study from The Children’s Partnership, a Network member, examines the accuracy and reliability of the State of California’s online resource—the national website—for identifying dentists who treat children enrolled in Medi-Cal. The researchers reported many discrepancies in the information provided. Wendy Lazarus, Partnership Co-President, said that the study also indicates that some children who were moved from Healthy Families to Medi-Cal are having difficulty obtaining promised dental care. Read the study.

National Policy

Congress Weighs Funding for Family-to-Family Health Information Centers
Bills are pending in the US Senate (S 423) and House (HR 564) to continue support for the Family-to-Family Health Information Centers, which provide counseling and advice on navigating the health care system to families of children and youth with special health care needs. The bills would renew funding of $5 million annually for the program through 2016. Supporters are seeking co-sponsors for the bills, and suggest that interested parties contact their representatives.

Children’s Hospitals Graduate Medical Education Up for Renewal
The Graduate Medical Education Program provides independent children’s hospitals with funds to support training of pediatricians, including the specialty care providers required by many children with special health care needs. The program, which began in 1999, has been reauthorized twice by Congress and is once again up for renewal, and advocates are seeking supporters. Read more.

Americans with Disabilities Act Called Crucial in Health and Health Care
In celebration of the 23rd anniversary of the Americans with Disabilities Act (ADA) on July 26, Coleen Boyle, director of the National Center on Birth Defects and Developmental Disabilities, released a statement noting how the ADA can play a crucial role for including people with disabilities in federal efforts related to health and health care. She also notes the continuing major health gaps that make life challenging for many individuals with disabilities. Read her blog post.

A Wealth of Webinars

ACA Implementation: How Will Children and Families Fare?
Tuesday, August 6, 2013
11:30 a.m. PDT
Elizabeth Curwen of Spitfire Strategies will discuss a new communications platform that provides guidance for organizations who are working to ensure that children’s coverage remains a priority in the changing health care policy environment. Genevieve Kenney of the Urban Institute will discuss a new national household survey, which will track important outcomes of the Affordable Care Act (ACA) and will include a special section on children and families. Register>>

Health Insurance Marketplaces: Preparing to Assist People with Disabilities
Wednesday, August 7, 2013
Noon to 1 p.m. PDT
This session will address some of the most frequently asked questions regarding health insurance marketplaces and their impact on coverage and access to care for people with disabilities. Sponsored by The Friends of the National Center for Birth Defects and Developmental Disabilities. Register>>

Bridging the Gap: Transition from Pediatric to Adult Care for Young Adults With Childhood Onset Chronic Illness
Wednesday, August 14, 2013
Noon to 1 p.m. PDT
Researchers from the Stanford Clinical Excellence Research Center will discuss a care model they are developing to improve the process for teens and young adults with complex chronic illnesses as they make the transition from the pediatric to the adult health care system. The next step will be to identifying pilot sites to implement the model and evaluate its effectiveness. Register>>

Understanding SB 468: Developmental Services Self-Determination Program
Monday, August 20, 2013
10 a.m. to 11:15 a.m. PDT
SB 468 creates a voluntary self-determination program that allows individuals with disabilities, to control the services they need, with support from family and professionals. The webinar is presented by the USC University Center for Excellence in Developmental Disabilities at Children’s Hospital Los Angeles. For more information, contact Fran Goldfarb at (323) 361-3831 or Register>>

Healthy Families Transition to Medi-Cal
Wednesday, August 21, 2013
Noon to 1 p.m. PDT
As the next phase of the Healthy Families transition gets under way, Jane Ogle, Deputy Director, California Department of Health Care Services, will address key issues such as service coverage, continuity of care and adequacy of the provider network. Register>>


Siblings of Children with Disabilities May Show Emotional Effects
A University of Arkansas study published in the August edition of Pediatrics suggests that siblings of children with disabilities were more likely to have parent-reported problems with interpersonal relationships, behavior, recreation and schoolwork than those with typically developing siblings. Read the study.

State Strategies to Avoid Antitrust Concerns in Multipayer Medical Home Initiatives
As states have launched medical home initiatives within their Medicaid and CHIP programs over the past several years, concerns have arisen about antitrust issues when multiple payers are involved. This Commonwealth Fund issue brief outlines strategies some states have developed to address these issues. Read the issue brief.

Children’s Budget 2013
Working from the premise that a nation’s budget reflects its values, First Focus, a national advocacy organization, has compiled the Children’s Budget 2013, which suggests that if the US were graded on how well it supports children it would receive a C- overall and a failing grade in a number of specific areas. The report tracks spending on child health programs over time. Read the report.


Emergency Preparedness for Families with Special Needs
Georgina Peacock, a developmental pediatrician with the National Center for Birth Defects and Developmental Disabilities, offers advice for families on how to be prepared to care for a family member with special needs during an emergency such as an earthquake or flood. Read her blog.

Being a Healthy Adult – English and Español
A new publication, available in English and Spanish, offers advice for young adults with special needs on how to manage their own health and health care as they make the transition to adult services, including suggestions on how to interact with medical personnel. The publication was produced by the Boggs Center on Developmental Disabilities at the University of Medicine and Dentistry, New Jersey. Read the publication.

Advice for Professionals Treating Learning Disabilities
The American Academy of Pediatrics, the National Association of Pediatric Nurse Practitioners and the National Center for Learning Disabilities have joined forces to produce the Learning Disabilities Navigator, a free online resource guide for pediatric health care professionals and parents. The guide covers evaluation, classification and treatment of learning difficulties and disabilities, and offers advice for addressing patient and family concerns in a sensitive manner. View the site.


Covered California Town Halls
The state’s health benefit exchange is hosting a series of town hall meetings across the state to engage community leaders and stakeholders in informing the public about the program and the enrollment process. Find the town hall nearest you.

CSHCN in the News

Healthy Families Transition Concerns Heightened As Most Difficult Phases Start
California HealthLine, August 1

6% of Children Need New Providers in Transition From Healthy Families to Managed Medi-Cal
California Healthline, July 25

Final Rule on Mental Health Parity Law to Be Released This Fall, Kennedy Predicts
Boston Globe, July 24

Pediatric Dental Coverage Revisited
California Healthline, July 22

Even Children with Pediatricians Sometimes Get Treatment at Retail Clinics
Reuters, July 22

More Healthy Families Feedback Sought on Medi-Cal Managed Care Transition
California Healthline, July 19

New Grants Will Help Get Insurance for More Kids
US News, July 3

Keep in Touch
Let us know what's happening with your organization or family. E-mail Network Manager Janis Connallon at with your news or updates.