Network Newsletter sent on April 12, 2018
News, policy updates, resources, events, and advocacy opportunities
From Family Voices: Tool Measures Level of Family Engagement, Offers Ideas for Enhancement
Though there is much agreement on the value of family involvement at the systems level of health care – where policies, programs, and services are created or changed – it is still rare for families to have more than a token amount of power and influence. A new issue brief from Family Voices provides a framework, featuring four domains and specific criteria, that organizations can use to measure and improve the level of family engagement in their work. Read the Issue Brief.
California Children's Services
CCS Advisory Group Addresses Specialty Care, Other Whole-Child Transition Issues
On April 4, members of the CCS Advisory Group questioned state representatives on a range of subjects related to the upcoming transfer of some CCS children into Medi-Cal managed care, including the availability of pediatric specialty care in the selected counties, the future of coverage after the first year of transition, and family engagement with the plans. CalOptima, one of the managed care plans, made a presentation on how it is addressing stakeholder engagement. See the agenda and slides from the meeting. The state also has sent and posted the 90-Day Notice (PDF) to families that explains how the transition will work and answers frequently asked questions.
Also See Related Opinion: A CCS Client Says His County Health Plan Is Not Ready for the Whole Child Model (PDF). The author is a 15-year-old student who has spoken at several Sacramento hearings over the last two-and-a-half years in support of children who are clients of the California Children's Services Program.
Transition to Adult Care
Webinar: Transfer to Adult Care
Thursday, April 26
12 p.m. to 1 p.m. Pacific Time
Got Transition/Center for Health Care Transition Improvement
Details: The third in a five-part series, this webinar will feature examples of best practices among state Title V agencies, along with tools, resources, and problem-solving strategies. Register.
Children's Hospitals Explore Screening for Social Determinants of Health
Social determinants – such as food insecurity, homelessness, and lack of access to care – have a substantial effect on children's health and on outcomes for hospitalized children. The Children's Hospital Association has begun a process to define ways to implement screening of patients for social determinants and to find community resources to address them. Read more.
Medi-Cal Children's Health Advisory Panel to Meet
Thursday, April 19
10 a.m. to 2 p.m. Pacific Time
1414 K St, Sacramento – The California Endowment, 1st Floor Conference Room
888-947-8923; Passcode 2475546
Details: Agenda and meeting materials are posted on the panel website. MCHAP is a 15-member independent statewide advisory body that advises DHCS on matters relevant to children enrolled in Medi-Cal.
Comments Sought on CSHCN Title V Funding
Every year the state completes a report and an application for funding through the federal Title V Maternal and Child Health Services Block Grant Program. One of the report sections covers goals for children with special health care needs. The draft report (PDF) is now available, and comments should be sent to CaliforniaTitleV@cdph.ca.gov by Friday, April 20.
State Responds to Break-in at Department of Developmental Services
On February 11 a break-in occurred at the Department of Developmental Services legal and audits office building in Sacramento. The Department has issued a notice explaining what happened and what consumers can do.
- Seven Things Parents of Kids with Special Needs Hate, and Seven Ways to Be Supportive – from the Washington Post
- Center on Technology and Disability – Free resources to increase the capacity of families and providers to advocate for, acquire, and implement assistive and instructional technology tools to improve children's quality of life.
- Complex Child April issue: Spirituality
Pediatric Webinar Series: Perinatal Palliative Care
Tuesday, April 17
12 p.m. to 1 p.m. Pacific Time
Coalition for Compassionate Care of California
Fee; 1 CEU available for nurses and social workers. This webinar will describe the challenges that have resulted from the ever-improving ability to diagnose problems in utero. Specifically, how to apply the principles of palliative care to effectively support a woman who learns her unborn child has a life-limiting condition. Register.
Measure What Matters: Advancing Multidisciplinary Care Coordination in Primary and Subspecialty Care Settings
Thursday, May 10
9 a.m. to 9:45 a.m. Pacific Time
National Center for Medical Home Implementation and the National Center for Care Coordination Technical Assistance
The first in a two-part series, this webinar will present real-world experiences from diverse health care providers with the common goal of capturing the value of care coordination using the Care Coordination Measurement Tool and its accompanying adaptation guide. Read more and register.
The federal Health Resources and Services Administration (HRSA) seeks applicants for the position of Associate Administrator for the Maternal and Child Health Bureau. Apply by April 25. Read details.
The American Association of People with Disabilities (AAPD) is offering eight NBCUniversal Tony Coelho Media Scholarships for the fall semester of 2018. The scholarships are available to undergraduates, graduate students, and high school seniors with disabilities who are pursuing an interest in the media, entertainment, or communications fields. Each recipient will receive $5,625 to help cover the cost of education. Read more.
2018 California School-Based Health Conference
May 17 to 18
Sheraton Grand Hotel, Sacramento, CA
Details: Learn, grow, and connect with providers, educators, advocates, and other leaders in the school-based health care movement across the state. The conference will feature workshops for all levels of experience and engagement. Read more and register.
In the News
- Federal Watchdog: Students with Disabilities More Frequently Disciplined
Disability Scoop, 4/9/18
- Justice Department Sued Over Rescinded Disability Guidance
Disability Scoop, 4/6/18
- Creative Growth's Special Needs Clients Seize the Limelight at Fashion Show
SF Chronicle, 4/6/18
- Twitter Adds Disability to Abuse Reporting Options
Disability Scoop, 4/3/18
- Addy & Uno: Musical Starring Characters with Disabilities Spreads Message of Kindness
- Families Moving Across the Country to Help Their Kids with Disabilities
Disability Scoop, 3/29/18