Posted May 11, 2017
News, policy updates, resources, events, and advocacy opportunities
Care Coordination
Health Plans Test Models to Improve Care Coordination
In February, the Association for Community Affiliated Plans released a report profiling efforts of several health plans to provide Medicaid coverage and high-quality care coordination for children with special health care needs.
An upcoming webinar will summarize the report's findings, and representatives from the health plans will describe their programs.
Thursday, May 18
12 to 1 p.m. Pacific Time
Host: Association for Community Affiliated Plans and NORC
Read more and register.
Innovative Financing Strategies for Care Coordination, Family Supports, and More
The Catalyst Center has built an online resource to showcase the ways many Title V and Medicaid programs use funds from their own programs or leverage other funding to improve and finance care for children with special health care needs. The resource compiles examples of strategies used to increase the number of children with health insurance, close benefit gaps, pay for additional services, and build the capacity of the system of care. Read about these financing strategies.
Family Engagement
Family Leaders in Action: Pursuing an Accessible Playground
Like most 9-year-olds, Mia Vasquez enjoys swings and slides. But her special needs mean that her family must travel long distances from their Hayward, CA, home to find accessible playground equipment. Her parents, Emelyn Lacayo and Daniel Vasquez, now are spearheading a drive for "Mia's Dream Come True," an all-accessible playground near their home. Both parents are graduates of Family Voices of California's Project Leadership, an advocacy training program designed to empower family members to pursue policy and service improvements. Read the family's story: Dreaming of a Playground for All.
Webinar—Beyond Coexistence: Cultivating Successful Family Partnerships in Clinical Practice
Monday, May 15
1 to 2 p.m. Pacific Time
Hosts: National Center for Medical Home Implementation, Family Voices' National Center for Family Professional Partnerships, and Bright Futures National Center
First in a three-part series about family engagement in pediatric practices and systems, this webinar will cover strategies to improve shared decision-making among families, clinicians, and practice staff.
Register.
Also see: Family Engagement Guide: A guide for effectively engaging family perspectives in a pediatric practice – from the National Institute for Children’s Health Quality (NICHQ)
Transition to Adult Care
States’ Best Practices for Improving Transition Planning, Education
A new report from Got Transition highlights efforts of Title V programs in 32 states to increase the number of youth who receive the necessary services to make a successful transition to adult care. The report presents recommendations that states can implement. View the report (PDF). The findings also were presented at a workshop for the Association of Maternal and Child Health Programs' annual conference. View a recording of the session.
Also see: Transitioning to Adult Care: Supporting Youth with Special Health Care Needs – An "Evidence to Action" Brief from PolicyLab at Children’s Hospital of Philadelphia
National Policy
Advocates Target Senators as Health Care Act Moves Ahead
The American Health Care Act has moved to the Senate, where it may face substantial changes. Advocates are urging stakeholders to contact their senators to educate them on the bill’s potentially devastating impact on children covered by Medicaid, especially those with special health care needs, and their families. Family Voices of California provides template letters, phone scripts, and other advocacy materials, along with information about how to reach senators in every state. Other organizations provide background on potentional consequences if the bill moves ahead in its current form:
- Parents of Sick Children Fear Trap if States Have Say on 'Preexisting Conditions'
- A Little-Noticed Target in the House Health Bill: Special Education
- Think You're Not Affected by the GOP Health Bill? Think Again
- Threat to Medicaid Puts All Children’s Health Care on the Line
- ACA Replacement Bill Clouds Future of Children’s Health Insurance Program (free registration may be required to read this article)
Mental and Behavioral Health
Addressing Mental Health Needs of Youth
Young Minds Advocacy has released a report, California's Children and Youths' System of Care: An Agenda to Transform Promises into Practice, which provides an overview of mental health services in the state and offers recommendations for creating fair, effective, and accountable mental health policy.
Resources
- Checklist for Family-Centered Rounds Deemed Beneficial – Study reports that using a family-centered rounds checklist and related provider training is associated with better quality care and higher ratings for safety of care.
- Complex Child's May issue is its annual Respiratory Edition.
- Supplemental Security Income applications now are available to file online.
- NBCUniversal Tony Coelho Media Scholarship – For undergraduate and graduate students with disabilities who are interested in pursuing a career in communications, media, or the entertainment industry. Applications due June 19.
Webinars
Policing & People with Disabilities: Community-Based Solutions
Thursday, May 18
10 a.m. to 12 p.m. Pacific Time
Sponsors: The Arc and National Center on Criminal Justice & Disability
Second in a series to educate law enforcement, other criminal justice professionals, people with disabilities, family members, and disability advocates about the factors that play into discrimination and violence toward people with intellectual and developmental disabilities, and how to address those issues.
Register.
Understanding Saving and Investor Choices for ABLE Account Owners
Wednesday, May 24
11 a.m. to 12:30 p.m. Pacific Time
Sponsor: ABLE National Resource Center
This webinar will help families make more informed decisions to manage risk and select savings or investment choices under ABLE accounts, which allow qualified individuals with disabilities and their families to open tax-free savings accounts without losing government assistance.
Register.
Archived Webinar
- Engaging Diverse Families in Leadership for Systems Change: See presentation slides (PDF) and recording.
Event
2017 National Family Support Network Forum
May 17-18
Washington, DC
Host: National Family Support Network
This forum will focus on the value of Family Support and Strengthening Networks, and plan how stakeholders can support and strengthen families in every state.
Read more and register. Fee.
In the News
- Will Congress Save the Children’s Health Insurance Program?
The Atlantic, 5/10/17 - Doctors and Dentists Say CA Governor Brown’s Budget Misuses Tobacco Tax Funds: Groups Press Governor to Use Tobacco Tax Funds to Increase Medi-Cal Reimbursement Rates
KPCC, 5/10/17 - San Diego Study Finds EpiPens Are Still Potent Long After Their Expiration Date
KPBS, 5/9/17 - Diplomas Remain Elusive for Many with Disabilities, Report Says
Disability Scoop, 5/4/17 - Jimmy Kimmel Opens Up About His Newborn Son's Heart Surgery and Praises Obamacare
NPR, 5/2/17 - Asthma Studies Raise Thorny Questions About Race and Genetics
California Health Report, 5/1/17 - Beauty Pageant Contestant with Down Syndrome Set to Make History
Disability Scoop, 4/26/17
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.
