A newsletter to inform advocates for CSHCN about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.
Please forward the newsletter and encourage your colleagues and constituents to join the Network.


CCS Redesign Technical Workgroups Continue to Meet
Meetings for technical workgroups on Data, Eligibility/Health Conditions and Outcome Measures/Quality have been scheduled for early May; see workgroup webpages for call-in information. The next full meeting of the CCS Redesign Stakeholder Advisory Board (RSAB) will take place May 29 in Sacramento. The recently updated RSAB membership list (PDF) and details about past and upcoming meetings are posted on the website. Write to CHPR_CCS@em.ucla.edu for more information.



Supporting Self-Management—A Team Effort
Most children with chronic and complex health problems live at home and depend on their family members to help manage their health. An article by Foundation staff in the May 2015 edition of Pediatrics, the journal of the American Academy of Pediatrics, provides insight into how pediatric practices can offer "self-management" supports to increase families' skills and confidence in coping with chronic conditions on a daily basis. Read more.





Vaccination Bill Advances
A bill to eliminate the personal belief exemption as a means of avoiding immunization for children in schools and other childcare settings has cleared its third policy committee in the state Senate and now moves to the Senate Appropriations Committee. SB 277, introduced by state Senators Ben Allen (D-Santa Monica) and Dr. Richard Pan (D-Sacramento), aims to prevent the spread of diseases such as measles and whooping cough. It also would require schools to include local vaccination rates in mailings to parents. Read more.



Funding Increase Urged for Title V Block Grant
Lori Tremmel Freeman, CEO of the Association of Maternal and Child Health Programs (AMCHP), submitted testimony (PDF) on April 29 before the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies, in support of a $2 million dollar increase in federal funding for the Title V Block Grant, which supports maternal and child health programs. Freeman recommended that funds be used, in part, to provide and promote family-centered, community-based, coordinated care for children with special health care needs. She also highlighted AMCHP's work on the Standards for Systems of Care for Children and Youth with Special Health Care Needs, supported by the Lucile Packard Foundation for Children's Health.

Proposed Rule to Implement Parity for Mental Health Coverage
The federal Centers for Medicare and Medicaid Services has issued a proposed rule that would require Medicaid to cover mental health services at the same level as medical and surgical services. For more information, including a fact sheet about implications for Medicaid and the Children's Health Insurance Program, see Medicaid's Behavioral Health Services webpage.

See also: Feds Call for Expanded Mental Health Coverage



Webinar Series for Providers: Transition of Patients with Special Health Care Needs to Adult Medical Care
Seven-Part Series – Final segment, May 6
10 a.m. to 11 a.m. Pacific Time
Topic: Patient Panel Perspectives, Questions and Answers
New York – Mid-Atlantic Consortium for Genetic and Newborn Screening Services
Designed to give health care providers the tools and information necessary to care for young adults with special health care needs who are transitioning from pediatric to adult care.
Learn more and register.

Improving Employment Opportunities for Youth with Disabilities
Tuesday, May 12
9 a.m. to 10:30 a.m. Pacific Time
Mathematica Policy Research
Young adults with special health care needs face many challenges securing employment and attaining economic self-sufficiency. See the results of demonstration projects designed to improve outcomes for this population via education counseling, employment services and financial planning.
Read more and register to attend via webcast or in person (Washington, DC).



Video Series Helps Implement Mental Health Priorities in Practice
Pediatricians are, and will continue to be, an important first resource for parents who are worried about their child's health. Engaging families to uncover and clarify children's mental health needs requires skill and practice. The Implementing Mental Health Priorities in Practice: Strategies to Engage Patients and Families program consists of six videos demonstrating examples of patient/family encounters. Topics include: depression, disruptive behavior, inattention/impulsivity, social-emotional health, substance use and suicide/self-harm.

Well-Visit Planner
Created and developed by the Child & Adolescent Health Measurement Initiative (CAHMI), the Well-Visit Planner helps parents/caregivers of children ages 4 months to 6 years prepare for well-care visits with pediatric health care providers. This online planning tool, currently available in English and Spanish, presents parents with a series of questions and produces a customized guide for them to use in their upcoming appointment with their child's primary care provider. Parents of children with special health care needs can answer the questions using their child's actual age or developmental age. An Implementation Portal also is available for providers.

Family-Centered Care Resource
The Maternal and Child Health Navigator, published by Georgetown University, has developed a Family-Centered Care Training Brief. This resource aims to help maternal and child health professionals develop skills to include families in program design, delivery of services and evaluation.





ADA National Network/FEMA Webinar Series: Emergency Management and Preparedness-Inclusion of Persons with Disabilities
Five-Part Series – First Segment, May 14
11:30 a.m. to 1 p.m. Pacific Time
Topic: FEMA Promising Practices: Closing Gaps in Local Emergency Plans and Grassroots Emergency Planning
Pacific ADA Center
Learn how to engage key stakeholders, including people with disabilities, in improving local emergency preparedness plans.
Read more and register.

Webinar Series: The Next Generation of Freedom and Self-Determination: Moving Supported Decision-Making from Theory to Practice
Three-Part Series – Second Segment, May 14
10 a.m. to 11:30 a.m. Pacific Time
Topic: Supported Decision-Making and Medicaid, Home and Community Based Services Settings Final Rule
National Resource Center for Supported Decision-Making
Learn how individuals with disabilities can use supported decision-making to be more involved in selecting the settings in which they receive Medicaid services.
Learn more and register.

Webinar Series: Pediatric Care Coordination: Beyond Policy, Practice, and Implementation
Three-Part Series – Third Segment, May 28
9 a.m. to 10 a.m. Pacific Time
Topic: Beyond Implementation: Capturing the Value of Care Coordination
National Center for Medical Home Implementation
Foundation grantee Dr. Richard Antonelli and his team at Boston Children's Hospital will share tools and strategies for practices to evaluate pediatric care coordination activities and measure value for patients and families.
Read more and register.



Health Services in Schools: From Cost-Effectiveness Studies to Distributional Justice
Friday, May 29
9 a.m. to 4 p.m.
Stanford University, Levinthal Hall
Stanford McCoy Family Center for Ethics in Society and Stanford Humanities Center
Experts share common challenges and themes in providing health care for children in schools. Presentation by Foundation grantee Dr. Dian Baker, pediatric nurse practitioner, professor at Sacramento State University and co-author of a recent study of school nursing care for children with special health care needs in California.
Registration required. Free.

Presentations Sought: Association of University Centers on Disabilities Conference
Proposals now are being accepted for presentations and posters for the Growing Leaders Driving Change conference scheduled for November 16-18 in Washington, DC. Submit your proposal. Deadline June 2.



Let us know what's happening with your organization or family. E-mail Newsletter Editor Eileen Walsh at Eileen.Walsh@lpfch.org with your news or updates.