Network Newsletter sent on November 30, 2017
News, policy updates, resources, events, and advocacy opportunities
Incorporating the Family Perspective to Improve the Health Care System
Evidence shows that to create a high-quality health care system, the family perspective must be actively pursued and incorporated at all levels – direct care, organizational design and governance, and policymaking. A new fact sheet from the Lucile Packard Foundation for Children’s Health outlines the value of family engagement and the barriers that prevent its implementation, and offers recommendations for improvement in California. Read the fact sheet.
Children with Medical Complexity
Parent Navigators a Highlight of Complex Care Program
Children’s National Health System provides a medical home for more than 2,000 children with complex conditions throughout the Washington, DC, area, with a focus on fully coordinated care. One of the program’s success stories is its Parent Navigator Program that employs parents of children with special needs to assist families who are new to the system. Children’s National’s work is part of the CARE (Coordinating All Resources Effectively) program, through which the Children's Hospital Association partners with 10 hospitals around the country on projects aimed at improving outcomes and reducing costs of care for children with complex medical conditions enrolled in Medicaid. Read more.
State Strategies for Medicaid Quality Improvement for CSHCN
A growing priority for state and national health policymakers is addressing the unique needs of children with special health care needs enrolled in Medicaid, and ensuring the quality of care they receive. The National Academy for State Health Policy (NASHP), with support from the Lucile Packard Foundation for Children’s Health, convened a national work group to assess the current state of Medicaid quality measurement and improvement for this population, and recommend opportunities and strategies for state Medicaid agencies to strengthen these efforts. A new issue brief reports on their findings. Read the issue brief.
Webinar Recording: Serving CYSHCN in Medicaid Managed Care
A variety of strategies are available to states to leverage quality metrics to improve health care and quality of life for CSHCN and their families. This November 27 webinar, sponsored by the Association of Maternal & Child Health Programs, the National Academy for State Health Policy and the Lucile Packard Foundation for Children’s Health, examined the current landscape, challenges, and key strategies for states conducting quality measurement for these children. Listen to the webinar. (Content begins around the 3:42 mark.)
Tax Bill May Affect CSHCN; CHIP still delayed
- Provisions in the proposed tax bill, on which a vote is expected today, could have an impact on families of CSHCN, including repeal of the medical expense deduction and the "orphan" drug tax credit that encourages research on rare diseases. The bill also could lead to cuts in other programs, including Medicaid, which funds care for many CSHCN.
- The Children's Health Insurance Program (CHIP) remains in limbo. Advocates urge action using the CHIP Advocacy Toolkit (PDF) from the American Academy of Pediatrics
Deadline Approaching for Health Insurance Enrollment
Keep up with Department of Health Care Services Actions
The Department of Health Care Services provides a bimonthly update of events and actions at the department, which oversees California Children’s Services, Medi-Cal, and many other child health programs. Sign up to receive these updates.
Closing the Gaps in Rural Complex Care
A report from the Center for Health Care Strategies highlights an innovative pilot effort to connect rural Montanans to high-quality, cost-effective care, in spite of limited resources and a vastly rural service area, using interdisciplinary care teams that rely on community health workers and volunteers. Though not focused specifically on children with special health care needs, the information may be of interest. Read more.
- Exceptional Parent Magazine November issue: Financial Planning. Topics include eligibility for public assistance programs, top ten mistakes caregivers make when planning, financial literacy for students with disabilities, and more.
The Role of Title V Programs and Value-Based Purchasing for CYSHCN
Wednesday, December 6
10 a.m. to 11 a.m. Pacific Time
Sponsor: Catalyst Center and the American Academy of Pediatrics
Details: Speakers will discuss innovations that support value-based purchasing for CYSHCN. Read more and register.
Charting the LifeCourse Respite Tools
Thursday, December 7
11 a.m. to 12:30 p.m. Pacific Time
Sponsor: The ARCH National Respite Network and Resource Center and Missouri Family to Family
Details: Discussion of newly developed LifeCourse Tools, with guidance on how to use the tools most effectively to help caregivers recognize the need for respite for themselves, understand the possibilities for respite, and create a plan to use short breaks. Read more and register.
Educating Policymakers about Public Health Issues
Monday, December 11
9 a.m. to 10:30 a.m. Pacific Time
Sponsor: Region IV Public Health Training Center
Details: Insights, tips and pointers on how to educate elected officials on issues. Discussion of data and information that are useful for policymakers, and how officials process and prioritize information. Read more and register.
Retrofitting The Medical Home For Children With Special Health Care Needs—hosted by Family Voices Of California
Communicating With Your Kids: Sexuality And Developmental Disabilities —hosted by Family Voices of California
Program Analyst Position Open at AMCHP
The Association of Maternal & Child Health Programs (AMCHP) is seeking individuals with a bachelor’s or master’s degree in public health, or other related health or human services field, with three to five years of directly related professional experience to apply for their program analyst position in Washington, DC. The position supports the Child & Adolescent Health team, and will participate in planning and program implementation, research, and evaluation of initiatives related to children and youth with special health care needs. Read more and apply.
CSHCN on Agenda for AMCHP 2018 Annual Conference
The schedule of workshops and skills-building sessions for the Association of Maternal and Child Health Programs annual conference has been posted. The conference, which includes a track on children and youth with special health care needs, provides a venue to present ideas, research, innovative programming, best practices, and outreach strategies. The conference is scheduled for February 10-13 in Arlington, Virginia. Read more and register.
Family-to-Family Health Information Centers. Must apply by January 17, 2018. Sponsored by the Department of Health and Human Services, Health Resources and Services Administration.
In the News
- Trump Taps New Special Education Chief
Disability Scoop, 11/16/17
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