Medical Home Challenges, Scholarship In Honor Of Advocate, & Comments On Community-Based Services

This newsletter was sent November 16, 2016. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Reminder: Our 15th Annual Health Summit & Legislative Day will take place Feb. 27-28, 2017. More information and registration here. Free for families.


Scholarship Fund Established In Honor Of Lifelong Children’s Health Advocate, Erin Givans

The Children’s Speciality Care Coalition (CSCC), in collaboration with Troy Givans, has launched a scholarship fund to continue the legacy of Erin Givans, founding executive director of the CSCC. The scholarship will be available to female students pursuing a master’s degree in public policy and will ensure they have the opportunity to begin a career in pediatric health policy. The CSCC hopes to award their first $5,000 scholarship next year, and they’ve pledged to match dollar-for-dollar donations up to $12,500 toward a fundraising goal of $250,000. For more information about the Erin Aaberg Givans Memorial Scholarship Fund and how you can donate, click here. To read a case statement, click here


Project Leadership Presentation At First 5 Summit, Santa Barbara Implements Training

FVCA presented at the First 5 Annual Child Health, Education, And Care Summit in Sacramento on Nov. 9. The session titled “FVCA Project Leadership: Engaging Family Leaders Through Training, Mentoring, And Support” was led by Project Leadership Manager, Allison Gray. Read her thoughts on the afternoon:

Our presentation aimed to inspire parent leadership as a goal of family engagement using Project Leadership as a model. We wanted to increase interest in community partnerships that support parent leadership development and parent participation on health related policies and practices. Myself, Yvette Baptiste (executive director of the Eastern Los Angeles Family Resource Center and FVCA council member), and Olga Maldonado (family resource specialist at Support For Families Of Children With Disabilities and a Project Leadership graduate) spoke on a panel that was followed by a Q&A and small group discussion activity. I provided an overview of the program, Yvette gave the perspective of the Family Resource Center as a key partner, and Olga shared a graduate’s perspective. The session was well-received and some participating agencies have followed up with applications for our upcoming Trainer-Of-Trainers workshops.

Jennifer Griffin, Family Resource Specialist at Alpha Family Resource Center in Santa Barbara, shares how their first implementation of  FVCA Project Leadership is going:

Each session has been livelier and more energetic than the last. Our participants are a mix of parent advocates and self-advocates, so we’re fortunate to have multiple perspectives. Everyone has been so engaged and supportive of one another’s learning processes. It’s been a pleasure watching experiences change. In the first session, people were more quiet and observant, and opinions and comments were flying in our recent session.

We’ve been very fortunate to have some excellent guest speakers as well. Fred Robinson gave a fascinating presentation on the history of the Lanterman Act, and some of our Ventura participants fondly remembered him from his days as chief executive officer of the Arc Of Ventura County (he retired 4 years ago).  

Our other guest speaker was (now Assemblymember) Monique Limón, who is currently serving on the Santa Barbara School District Board. She was extremely generous with her time and welcomed all questions and offered insightful responses. We’re very lucky to have her representing us in the state legislature.

We’re hoping for some of our parent participants to join us at the Family Voices Health Summit in February with their newly-minted advocacy skills. Project Leadership has proven to be a great success in Santa Barbara, and we’re hoping to have the chance to repeat the experience in the future.



Fact Sheet: Challenges And Opportunities For Pediatric Medical Home Implementation And Children And Youth With Special Health Care Needs

Created by the National Center For Medical Home Implementation and the National Academy For State Health Policy, this new fact sheet addresses both the challenges and opportunities to provisions of care for children and youth with special needs enrolled in Medicaid managed care plans. To read the fact sheet, click here

Related: Toolkit on integrating mental health services into the pediatric medical home

Report: Registered NursesPartners In Transforming Primary Care

Compiled by the Josiah Jr. Macy Foundation, this report contains a set of recommendations centered around increasing the breadth and depth of nursing curricula and practicums in primary care. It calls on registered nurses to help patients manage their chronic illnesses through coaching, coordinate care for complex patients (including those with behavioral health problems), and manage care teams to improve clinical and financial outcomes. Read the full report here, or browse the brief. To read an article from the Journal Of The American Medical Association Forum discussing the report findings, click here



Stakeholder Feedback Needed On Draft Of State’s Whole Person Care Evaluation Design

The Department Of Health Care Services has released a draft design for evaluating the Whole Person Care (WPC) pilot program that is part of California’s Medi-Cal 2020 waiver. The WPC program focuses on the coordination of health, behavioral health, and social services to improve the well-being of Medi-Cal beneficiaries, and the evaluation is meant to analyze the impact of the pilot program. For more information on how to submit your feedback, click here

CMS Seeks Comment On Increasing Access To Home And Community-Based Services

The Centers For Medicare And Medicaid Services is seeking public comment now through Jan. 9 on ways to promote access to community options for people with disabilities while continuing to ensure choice for those who prefer institutional care. Perspectives from both home care workers and people with disabilities are encouraged. For more information and a list of ways you can submit your feedback, click here.

RelatedFeds Seek Input On Expanding Community-Based Services



Bridge 2 The Future Conference For Youth With Disabilities To Be Held In San Diego

In collaboration with the California Transition Alliance, YO! Disabled & Proud is hosting a conference for youth and young adults with disabilities (ages 18-26). Sessions will cover disability and social media jeopardy, advantages and disadvantages of disability disclosure, and making space for youth at independent living centers. The conference will take place Dec. 8, and cost is $150 per person (scholarships are available). To register, click here


November 17: How The Every Student Succeeds Act Affects Children With Disabilities

Sponsor: University Center For Excellence In Developmental Disabilities Education, Research, And Service

More information and registration here.

November 17: Live Webcast Demonstration Of Telehealth Capabilities

Sponsor: Health Resource And Services Administration

More information here.

November 17: Transition: Life After High School

Sponsor: Family Network On Disabilities

More information and registration here

November 17: Your Guide To An IEP That Works (And Other Related Services)

Sponsor: Family Network On Disabilities

More information and registration here

November 17: The Role Of Data Analytics For Population Health

Sponsor: Children’s Hospital Association

More information and registration here

November 18: Screening Of Woman For Alcohol During Pregnancy

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

November 18: Positive Behavior Support And Mental Wellness: A Unified Framework

Sponsor: Family Voices Of Indiana

More information and registration here

November 18: Cyber Security

Sponsor: Family Network On Disabilities

More information and registration here

November 29: National Entrepreneurship Month: The Possibility Of Self-Employment

Sponsor: National Down Syndrome Society

More information and registration here

November 30: Ask The Clinician: A Q&A With Pediatrician Nancy O’Hara

Sponsor: Autism Research Institute

More information and registration here.  

November 30: Overcoming Obstacles To Carrying And Using Self-Injectable Epinephrine

Sponsor: Food Allergy Research & Education

More information and registration here


November Issue Of Complex Child: Seizures And Neurological Issues

Premature Births Rise Slightly, First Uptick In 8 Years, March Of Dimes Reports

Type 2 Diabetes Becoming Childhood Epidemic

Kids’ Post-Election Fears Spur Trauma Counseling In Schools This Week

Cuts In Texas Medicaid Hit Rural Kids With Disabilities Especially Hard

Big New For Tot With Down Syndrome Turned Down By Modeling Agency

Young Adolescents As Likely To Die From Suicide As From Traffic Accident

Fresno Unified Could Add Community Health Centers To 10 Schools

Undocumented Parents Face Extra Challenges When Caring For A Disabled Child

Planned Early Births Tied To Developmental Problems In Kids

Study Finds Transportation Lacking For Those With Special Needs

Dangerous Bacteria Infecting Cystic Fibrosis Patients Around The Globe


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