Posted May 25, 2017
News, policy updates, resources, events, and advocacy opportunities
Care Coordination
Webinar: A New Tool to Measure Family Experience of Care Integration to Improve Care Delivery
Join a brief June 15 webinar that will introduce the Pediatric Integrated Care Survey (PICS), a validated instrument from Boston Children’s Hospital that assesses family experience of care integration in order to improve processes of care coordination and care management. The survey asks family respondents to identify their child's/youth's care team and report on their experiences with integration across disciplines, institutions, and communities. The tool was created by Richard Antonelli, MD, MS, Medical Director of Integrated Care at Boston Children's Hospital, and his team, with support from the Lucile Packard Foundation for Children's Health.
Thursday, June 15
10 to 10:30 a.m. Pacific Time
Sponsors: Lucile Packard Foundation for Children’s Health, the Catalyst Center, and Family Voices
Read more and register.
Webinar—Engaging Community in Care Coordination: Two Children’s Hospital Association Member Experiences
Tuesday, June 6
12 to 1 p.m. Pacific Time
Sponsor: Children’s Hospital Association
Representatives from Boston Children's Hospital and HSHS St. John's Children's Hospital in Illinois will discuss programs they have developed to engage their local communities, enhance care integration, and improve population health outcomes.
Read more and register.
California Policy
Report: Despite Calls for Change, Inequities Persist in Regional Center Purchase of Services, Funding Base
A longstanding issue in California has been the documented disparities in purchase of services for ethnic and racial groups of children with developmental disabilities served by the state’s 21 Regional Centers. A just-issued study from Public Counsel highlights the minimal progress that has been made toward equity despite legislative calls for change over several years. Advocates are seeking support for Assembly Bill 1610, which addresses a number of related Regional Center issues. Read the recommendations in Public Counsel’s full report, including the need for a change in how Regional Centers are funded. The research was funded by the Lucile Packard Foundation for Children’s Health.
Health Care Financing
Catalyst Center, Academy of Pediatrics Team Up to Explore Innovative Health Care Financing Strategies for CSHCN
A newly published special supplement to Pediatrics includes eight articles that offer in-depth analysis of value-based purchasing and value-based insurance design and their potential implications for children and youth with special health care needs. The supplement includes data and analysis on a variety of topics such as the perception of value and quality by families, care coordination, pharmacy benefits, mental health service utilization and costs, high cost-sharing, and more. The Academy of Pediatrics and Catalyst Center, sponsors of the supplement, also will host a webinar to introduce the findings:
Webinar—Innovative Health Care Financing Strategies for Children and Youth with Special Health Care Needs: Supplement to the May 2017 issue of Pediatrics
Tuesday, June 13
10 to 11 a.m. Pacific Time
Sponsors: American Academy of Pediatrics, Catalyst Center
The webinar will introduce the Pediatrics supplement, its primary findings, and its recommendations.
Read more and register.
California Children's Services
State Submits Final Design for Evaluating CCS Whole-Child Pilot Projects
Under a Medi-Cal waiver from the federal government, the Department of Health Care Services is required to specify how it will analyze the impacts of the CCS whole-child pilot projects. See the recently submitted final proposed evaluation design (PDF), which includes questions about access to care, quality of care, consumer satisfaction, provider satisfaction, cost of care, and more. The evaluation will be conducted by an independent entity.
National Policy
Three Pending Federal Decisions Could Affect Children with Special Health Care Needs
- The Trump administration’s newly proposed federal budget contains deep cuts to services upon which many children with special health care needs depend, including Medicaid. See: Health Care Advocates Say the Trump Budget Plan Would Gut Medicaid.
- Repeal of Affordable Care Act: At least two groups of senators are reportedly working on replacement bills. See: Obamacare Replacement Threatens Kids' Health Coverage.
- A September 30 deadline is approaching for a long-term extension of the Children's Health Insurance Program (CHIP), which covers just under nine million children in families who earn too much to qualify for Medicaid. See: As GOP Tarries on Health Bill, Funding for Children's Health Languishes.
Also see: Why Schools Are Worried About Medicaid Cuts Hurting Special Education
Immigration Issues
- In Calif., Some Fearful Families Think Twice About Keeping Undocumented Children on Medicaid
Center for Health Journalism, 5/18/17 - Who Will Care for Abril? Parents Fear for Their Disabled Child if They Are Deported
California Healthline, 5/17/17 - Fearing Deportation, Parents Worry About Enrolling Undocumented Kids in Medi-Cal
California Healthline, 5/15/17 - Immigrant Communities Are Prepping Children in Case Parents Don’t Come Home
California Health Report, 5/11/17
Employment Opportunity
The Lucile Packard Foundation for Children’s Health is recruiting for a Program Associate position, primarily for assisting in grant-related activities aimed at improving systems of care for children with chronic and complex health conditions. Responsibilities will include assisting with editing the Network Newsletter. Read more.
Events
13th Annual Disability Capitol Action Day
Tuesday, June 13
Cesar Chavez Plaza & State Capitol, Sacramento, CA
Host: The Disability Action Coalition
An opportunity for individuals with disabilities and their families to learn about community resources and participate in legislative visits with policymakers. Booths can be reserved until June 2 by organizations that would like to participate in the Disability Community Resource Fair. Reserve a booth.
Read more and register.
Healthy, Resilient, & Ready to Learn: 2017 National School-Based Health Care Convention
June 18-21
Long Beach, CA
Co-sponsored by the national School-Based Health Alliance and its California chapter, this national conference offers advocacy, networking, and continuing education opportunities for school-based health professionals. Topics include Adverse Childhood Experiences (ACEs), using data to advocate, and school-community partnerships to address student mental health needs.
Learn more and register. Early-bird registration for members of the California School-Based Health Alliance ends June 5.
In the News
- Do Charter Schools Serve Special Needs Kids? The Jury Is Out
New York Daily News, 5/22/17 - How Kids Would Fare Under the American Health Care Act
The Atlantic, 5/18/17 - For Families with Special Needs, Vouchers Bring Choices, Not Guarantees
NPR, 5/17/17 - Why Parents of Kids with Special Needs Are Fighting 'Bathroom Bills'
Washington Post, 5/16/17 - Minority Youth More Likely to Stop ADHD Meds
Medpage Today, 5/16/17
We'd like to hear from you
Let us know what's happening with your organization or family. Email newsletter associate editor Danielle DeCosta at Danielle.DeCosta@lpfch.org with your news or updates. Or contact newsletter editor: Eileen Walsh at Eileen.Walsh@lpfch.org.
