Posted April 28, 2016
A newsletter to inform advocates for children with special health care needs 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.
CALIFORNIA CHILDREN'S SERVICES
Senate Budget Subcommittee to Consider CCS
On May 5, the Senate Budget Subcommittee on Health and Human Services is scheduled to discuss the California Children's Services program. In March, the Assembly budget subcommittee unanimously voted down language (PDF) that had been added to the Governor's proposed budget regarding the state's plan to move some children covered by CCS into managed care, indicating that the issue should be handled through the policy process, not the budget process.
Stakeholder Groups Promote Principles to Guide CCS Redesign
Twelve essential "Principles for the Future of the California Children's Services Program" are outlined in a new document (PDF) endorsed by more than a dozen organizations that have a stake in the CCS program, including care providers, family representatives, advocacy groups, and others. The principles were submitted to Jennifer Kent, director of the Department of Health Care Services, which is managing the redesign.
Also see: Advocates make recommendations (PDF) about CCS redesign.
CCS Data & Quality Measures Technical Workgroup to Meet by Webinar
Wednesday, May 11 – Webinar only
10 to 11:30 a.m.
Call-in information and materials will be posted on the CCS Advisory Group website.
Ten Award-Winning Films About Kids with Special Needs
From Fairfield, California, to Khartoum, Sudan, stories about kids with special needs have inspired some of the most critically acclaimed films in cinematic history. See the list.
Webinar Series on Billing: Coding for Chronic and Transition Care Management Services in Pediatrics (Part 1)
Thursday, May 26
10 to 11 a.m. Pacific Time
Presented by the American Academy of Pediatrics with funding from the Lucile Packard Foundation for Children's Health
Neonatologist David M. Kanter will discuss changes in billing for chronic care and transition care management services (formerly known as complex chronic care coordination). He also will review non-face-to-face services, including telephone care and care plan oversight. Dr. Kanter is a member of the AAP Section on Neonatal Perinatal Medicine Coding Committee and of the AAP coding publications Editorial Board.
Read more and register. Fee.
Webinar Highlights Progress, Options in Care Coordination
Nearly 300 individuals from around the country joined an April 13 webinar regarding how to create care coordination systems that better serve children with special health care needs, their families, and their care providers. Sponsored by Boston University's Catalyst Center and the Lucile Packard Foundation for Children's Health, the webinar featured a parent's perspective, along with examples from Ohio and Colorado on how providers and payers are creating successful local care coordination systems. View a recording of the webinar and see the slide presentations. You also may sign up to keep informed about ongoing efforts to improve care coordination for children with special health care needs.
Related: Tools and Resources to Enhance Care Coordination
The National Center for Medical Home Implementation has released a Care Coordination guide that includes a collection of tools and resources for pediatric clinicians, state agencies, and family advocates seeking to implement care coordination.
Medi-Cal Children's Health Advisory Panel to Meet
Wednesday, May 11
11 a.m. to 3 p.m.
1700 K Street, First Floor Conference Room, Sacramento
Dial-in: 888-469-1095; Passcode: 5648141
The panel advises the Department of Health Care Services on issues that affect children covered by Medi-Cal, which includes many children with special health care needs.
The agenda is available on the panel webpage.
Members Sought for Advisory Committee to Examine Access under Medi-Cal Managed Care
The Department of Health Care Services is seeking stakeholders to serve on a new advisory group that will review access to Medi-Cal managed care services. Representatives of health plans, providers, advocates, beneficiaries, and other interested parties are invited to apply. The group will consider network adequacy and metrics that should be applied. Applications are due by Sunday, May 1.
Advocates Press for Focus on Children When State Measures Quality of Medi-Cal Care
Advocates are asking child-focused organizations around the state to sign on to a letter urging the Department of Health Care Services to collect additional indicators as it assesses the quality of care provided through Medi-Cal, which covers more than half of the state's children. The letter recommends adding measures for patient satisfaction for children with special health care needs and developmental screenings for infants and toddlers, among others.
California Seeks Letters of Intent for Project to Improve Children's Dental Care
The Department of Health Care Services Dental Transformation Initiative has issued guidelines for completing a Letter of Intent (PDF) for organizations interested in participating in a project designed to improve dental care for children covered by Medi-Cal. Letters are due by May 10.
NATIONAL POLICY – MEDICAID MANAGED CARE
Feds Release Sweeping Changes to Medicaid Managed Care Regulations
As California contemplates moving some children covered by California Children's Services into Medicaid managed care, the federal Centers for Medicare and Medicaid Services has released a final rule (PDF) that updates managed care regulations. A blog post from the National Academy for State Health Policy highlights the significant changes, the first since 2002. One of the new provisions requires states to more rigorously supervise the adequacy of plans' provider networks.
Family Voices Brings Advocacy to Sacramento
As part of its 14th Annual Health Summit and Legislative Day, held in Sacramento in March, Family Voices of California prepared recommendations for improving programs, systems, and services for children with special health care needs. Read the Health Summit Highlights (PDF), including legislative visits, and see the recommendations (page 9).
Group Dedicated to Strengthening Families Issues Standards, Offers Training
The California Network of Family Strengthening Networks has created standards that can be used as a tool for planning, providing, and assessing quality services in organizations that serve families. The standards are designed for use by direct service staff, funders, policymakers, families, and others. Registration required to download the standards.
School Health Webinar Series: Managing Care for Students with Chronic Conditions – Shared Use of Electronic Health Records by Health Systems and Schools
This webinar highlighted how the adoption of electronic health records may improve delivery of health care and help meet the needs of children with chronic conditions. See the full webinar series with slides and recordings.
Other Useful Resources
- 10 Things to Know before Traveling
- Experience Matters: A View into the Health and Wellbeing of US Children and Families with Autism Spectrum Disorder (PDF)
Medical Home: Resources to Support Providers and Children with Special Health Care Needs and Their Families
Tuesday, May 3
9 to 10 a.m. Pacific Time
Sponsored by the Johns Hopkins University School of Medicine and the New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services
Read more and register.
The Affordable Care Act and Persons with Disabilities: An Introduction and Overview
Wednesday, May 4
12 p.m. Pacific Time
Sponsored by Independent Living Research Utilization
Read more and register.
Webinar Series: Thinking Outside the Box: How to Advance Health Equity and Care Quality in the Pediatric Medical Home
Part One—Changing Perception: How to Build Cultural Competence and Humility
Thursday, May 12
10 a.m. Pacific Time
Sponsored by the National Center for Medical Home Implementation
Read about the series and register.
CALL FOR PAPERS
Reducing Disparities for People with Disabilities through Systems Change
The 2016 Southwest Conference on Disability, scheduled for October 5-7 in Albuquerque, seeks proposals for presentations that focus on reducing or eliminating disparities through systems change. Submission deadline is May 6. Learn how to apply.
IN THE NEWS
- Want to Know What It's Really Like to Have a Child with Autism?
Washington Post, 4/26/16
- How a Birth at Stanford 50 Years Ago Launched Search for Down Syndrome Test
- To Sway Drug Approval, Patient Advocates Turn Up the Heat on the FDA
Washington Post, 4/23/16
- TV Show Honored for Highlighting Down Syndrome
Disability Scoop, 4/19/16
- Perinatal Hospice Care Prepares Parents for the End, at Life's Beginning
Washington Post, 4/16/16
- A Child's Death and the Power of the Dental Lobby
- A Young Patient Instructs Caregivers on Treating the Terminally Ill
Baltimore Sun, 4/8/16
WE'D LIKE TO HEAR FROM YOU
Let us know what's happening with your organization or family. Email Program Associate Danielle DeCosta at Danielle.DeCosta@lpfch.org with your news or updates. Newsletter Editor: Eileen Walsh