This newsletter was sent December 13, 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.

Northern California Project Leadership graduates gathered in Oakland on Dec. 3 for a day of speakers, activities, and parent-to-parent networking. The luncheon was organized in honor of parents’ ongoing commitments to improving services for children and youth with special health care needs (CYSHCN) in California. All attendees previously completed Project Leadership, a training series funded by the Lucile Packard Foundation For Children’s Health designed to help family members develop skills to partner at all levels of decision making and engage in public policy advocacy activities on behalf of CYSHCN. 

Erica Monasterio, director of the Family Nurse Practitioner Program at the University Of California, San Francisco and parent of a child with special needs, delivered the opening keynote on the importance of parent-professional partnerships and parent-to-parent support. Afterward, the group of 40 attendees broke into three roundtable discussions on Medi-Cal services, California Children’s Services, and mental/behavioral health services. Following lunch, Elizabeth Grigsby, consumer rights advocate at Golden Gate Regional Center, inspired graduates with her personal and professional perspective on advocacy and what it means to represent individuals with disabilities. Assemblymember Tony Thurmond (District 15) wrapped up the day with a closing keynote in which he assured graduates he would continue prioritizing the needs of CYSHCN.

To view photos from the day, click here. For more information on our Project Leadership program, click here. 

Related: Project Leadership is now part of AMCHP’s Innovation Station, a database of best practices in maternal and child health. To check it out, click here.

RESOURCES

AAP Report: Home Is Best Option For Children With Disabilities, Medical Complexity

New guidance from the American Academy Of Pediatrics states that home is the best residence for children with significant disabilities, and pediatricians should serve as a key resource for families who are exploring community-based options. The guidance explores various alternate arrangements ranging from medical facilities to host families or voluntary foster care. To read the report, click here.

Related: Doctors Urged To Help Families Seeking Out-Of-Home Placements

New Tourette Syndrome Tool Kits Available For Patients And Providers

Two new guides from the Tourette Association Of America provide information on diagnosing, treating, and living with Tourette Syndrome (TS). The patient tool kit aims to help individuals navigate not only the medical aspects of TS, but also the emotional aspects. In addition, it addresses common co-occurring conditions. The provider tool kit is meant to help doctors recognize TS and tic disorders so they can provide accurate diagnoses, referrals, and recommend treatments and support. To download the guides, click here (note: hard copies free upon request this month only). 

OPPORTUNITY FOR INPUT

Human Rights Fellowship Opportunity For Young Adults With Intellectual Disabilities

The Open Society Foundations is seeking applicants for their Community Youth Fellowship who want to implement a project of their own design that advances human rights in underserved communities. The fellowship comes with an award of $60,000 for an 18-month project that must begin no later than June of next year. There are two areas of focus—one is specifically reserved for young adults with intellectual disabilities (18-25). Letters of intent are due Jan. 10. For more information, click here. 

LPFCH Releases Super Parent Photo Project: Share Your Own Family Story 

Shot by Pulitzer Prize-winning photographer Deanne Fitzmaurice, this documentary series from the Lucile Packard Foundation For Children’s Health debuted on CNN last week and features an intimate look at what it takes to raise a child with a disability or chronic illness. The series follows 10 families (including three Project Leadership graduates and an FVCA council member!) as they go about their daily activities. To view the photo series, click here, and for more information on submitting your own family story as part of the Super Parent collective voice, click here. 

Signatures Needed To Protect Health Care For California’s Children And Families

In light of the recent changes in Congress, Children Now is calling on organizations to sign a letter of support urging California’s elected officials to protect children’s health care by not cutting Medicaid or repealing the Affordable Care Act. To read and sign the letter, click here.

WEBINARS

December 14: An Educator’s Guide To Teaching Students With ADHD

Sponsor: ADDitude

More information and registration here.

December 14: Positive Behavior Interventions & Support (PBIS) For The Holidays!

Sponsor: Family Network On Disabilities

More information and registration here.

December 15: Manage Children With Medical Complexity In Your Practice

Sponsor: AAP’s Council On Children With Disabilities

More information and registration here.

Related: See the corresponding clinical report, Recognition And Management Of Medical Complexity

December 15: Transitional Care Partnerships: Improved Communication & Care Coordination Across The Health Care Continuum

Sponsor: Center For Public Health Continuing Education

More information and registration here.

December 15: Rights And Responsibilities

Sponsor: Family Network On Disabilities

More information and registration here.

December 16: Zika: Challenges, Solutions, And Resources

Sponsor: Office Of Minority Health

More information and registration here.

December 19: Online Training Day: Focus On Transition For Students With Disabilities

Sponsor: Family Network On Disabilities

More information and registration here.

January 4: An Integrative Pediatric Neurologist’s Perspective On PANS/PANDAS, ASD

Sponsor: Autism Research Institute

More information and registration here.

January 11: Understanding The Five Developmental Areas

Sponsor: Family Resource Centers Network Of California

More information and registration here.

January 11: Preventing Burnout: Individual And Organizational Intervention

Sponsor: California Medical Association

More information and registration here. 

ARTICLES

December Issue Of Complex Child Magazine: Behavioral Issues

In Toy Ads And On The Catwalk, Models With Down Syndrome

Rural Arkansas Schools To Go Telemedicine Route

GE, Children’s Hospital Form Medical Software Venture

Mistaking A Toy Truck For A Gun—Why Law Enforcement Officers Need Education On Special Needs

Family Flees Florida To Save Daughter’s Life

What Donkeys Know About Autism

Apples And Oranges: Serious Chronic Illness In Adults And Children

‘Silas Project Update:’ Fragile Child Back In School, Father Seeks Marijuana Medicine For Other Kids

What Its Like To Raise A Baby With Microcephaly

What Do New HHS Picks Signal For Children’s Health Policy?

A Childhood Cancer. An Indefensible Hope. The Power Of Will

Miller Children’s Expands Care Deeper In Orange County, Opens Pediatric Specialty Center In Irvine

A Mother’s Lifelong Devotion To Her Disabled Daughter

My Son Had A Devastating, Mysterious Illness. The Conversation About Palliative Care Knocked Me Flat (also see Loving My Son, After His Death, from the same author).

This newsletter was sent November 29, 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.

NEWS

Family Voices Of California To Hold First-Ever Youth Track At Upcoming Health Summit & Legislative Day

Family Voices Of California is proud to announce that in addition to our regular Health Summit programming, youth who attend our conference will have the opportunity to participate in a dedicated track for, and led by, youth and young adults with disabilities. The goal of this first-of-its kind session is to educate those in attendance on the aspects of health care that are critical to consider as youth with special needs transition from pediatric to adult care. Youth Organizing! Disabled & Proud, an organization that connects, organizes, and educates youth with disabilities, is working with Family Voices Of California on this session and will help provide panel speakers. Registration for the youth track will be available soon. To register for the regular Health Summit, click here (free for families). 

RESOURCES

Report: Recognition And Management Of Medical Complexity

Published in Pediatrics, this report acknowledges that pediatricians, payers, and policymakers should recognize children with medical complexity, or multiple chronic conditions, as a distinct group in research, payment, and policy reform in order to improve care management and reduce cost. The report states that the overarching goals for children with medical complexity are to maximize health, function, development, and family functioning through patient and family-centered care, and to provide proactive care so that critical medical and health events are avoided when possible. To read the report, click here. 

Ensuring Quality And Accessible Care For Children With Disabilities And Complex Health, Educational Needs: Workshop Proceedings

This publication is a result of the National Academies Of Sciences, Engineering, And Medicine‘s forum on promoting children’s cognitive, affective, and behavioral health. It summarizes a workshop that explored the needs and challenges faced by children with disabilities and complex conditions (and their families). The workshop also covered promising solutions and innovative approaches for improving care and outcomes. To download the publication, click here (select ‘download as guest’ and enter your email address). 

Fact Sheet: Understanding The Effects Of Trauma On Health

This fact sheet from Advancing Trauma-Informed Care, a national initiative led by the Center For Health Care Strategies, examines the causes of trauma and how it can impact childhood health. It also explores the role health care providers can play in helping patients heal, and the kinds of policy changes that can support trauma-informed care implementation. To view the fact sheet, click here.

Related: online module addressing the effects of adverse childhood experiences.

OPPORTUNITY FOR INPUT

Virtual Systems Of Care Forum For Youth Leaders To Take Place On Dec. 15

Led by Youth M.O.V.E, the Direct Connect National Learning Community For Young Leaders will focus on systems of care in their December virtual forum. The session is geared toward youth who are leading engagement efforts in systems of care, and for those who want to develop professional skills and connect with peers who are using lived experiences to implement system change. To learn more and register, click here. 

Children With Autism Ages 6-12 Needed For Study On New Behavioral Eyeglass Aid

Researchers at Stanford University’s Wall Lab are looking for children with autism 6-12 years old who receive applied behavior analysis therapy at least twice per year to participate in a study on behavioral eyeglasses that are similar to Google Glass. The Autism Glass Project seeks to provide real-time behavioral cues and therapy sessions for its wearers as they interact with others. To learn more about the recruitment process and how to participate, click here, and to read an overview of the Autism Glass Project, click here.  

WEBINARS

Archived Webinar: Caregiving Youth: A Community-Based Framework For Identifying And Supporting A Hidden Population

Watch here.

December 1: Reaching Rural Populations 

Sponsors: Autism Research Institute and Autism Speaks

More information and registration here. 

December 1: Using Patient Voices To Improve Your Organization

Sponsor: The Center For Care Innovations

More information and registration here. 

December 1 & 15 (Two-Part Series): Medi-Cal Coverage Of Mild-To-Moderate Mental Health Conditions: The Current Landscape And Opportunities For Improvement

Sponsor: The Center For Health Care Strategies

More information and registration here. 

December 7: Ask The Nutritionist: Live Q&A

Sponsors: Johnson Center For Child And Health Development and Autism Research Institute

More information and registration here. 

December 13: Measuring Social Determinants Of Health Among Low-Income Populations: Early Insights From State Initiatives 

Sponsor: The Center for Health Care Strategies

More information and registration here. 

December 13: Neuroinflammatory Hypotheses Of Depression

Sponsor: The Brain & Behavior Research Foundation

More information and registration here. 

December 14: Educating First Responders: Working With Individuals With Autism And Their Caregivers

Sponsor: Autism Research Institute

More information and registration here.

December 15: In-Home Supported Services For People With Disabilities

Sponsor: The UCS University Center For Excellence In Developmental Disabilities

More information and registration here. 

December 15: Election Impact: What To Expect Out Of Washington In 2017

Sponsor: The National Council For Behavioral Health 

More information and registration here. 

December 16: Anxiety And Autism: What You Need To Know

Sponsor: Johnson Center For Child And Health Development

More information and registration here. 

ARTICLES

Family Fights For Down Syndrome Inclusion

Children’s Hospital Partnership Boosts Care For Sick Kids

The Other Sister: Returning Home To Care For An Autistic Sibling

This Is How We’re Failing Parents Raising Children With Special Needs

Worries About Health Insurance Cross Political Boundaries

My Life With Tourette’s Syndrome

I Know What It’s Like To Care For A Son With Microcephaly. My Child Is 53 Years Old

A Neglected Childhood Illness: Chronic Pain

Health Care Refugees: Family Flees Florida To Save Daughter’s Life

Along The Autism Spectrum, A Path Through Campus Life

Many Insured Children Lack Essential Health Care, Study Finds

Electronic Health Reforms Left Babies Behind

Microcephaly Found In Babies Of Zika-Infected Mothers Months After Birth

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.

NEWS

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.

RESOURCES

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 Nurses—Partners 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. 

OPPORTUNITY FOR INPUT

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.

Related: Feds Seek Input On Expanding Community-Based Services

EVENTS

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. 

WEBINARS

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. 

ARTICLES

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

This newsletter was sent November 2, 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.

NEWS

FVCA Honors CRISS Director For 20 Years Of Work On Behalf Of Children With Special Needs—Plus A Q&A On Family Engagement

FVCA presented Laurie Soman, director of the Children’s Regional Integrated Service System (CRISS), with a resolution from Senator Loni Hancock’s office in recognition of her 20 years of leadership as the director of CRISS and lifelong service to children with special needs. As the director of CRISS, a 27-county collaborative that works to create a seamless system of care for kids in California Children’s Services (CCS), Laurie spearheaded the first statewide family-centered care survey, a CRISS durable medical equipment survey, and a CRISS maintenance and transportation survey for CCS.

In addition to her work with CRISS, Laurie is the manager of policy analysis at Lucile Packard Children’s Hospital where she specializes in improving access to care for children with special needs, the project director for the CCS Medical Advisory Committee, a key stakeholder on the statewide CCS Redesign Advocacy Group, and a team member at the Alameda County Mental Health Initiative (the list goes on)!

We spoke with Laurie about her vast experience with systems of care, family engagement, CCS, and more—to read her Q&A, click here.

FVCA Nov. 16 Webinar To Focus On Identifying And Supporting Caregiving Youth

Caring for relatives or household members with special needs, mental illness, frailties of aging, or substance abuse issues can take a physical and psychological toll on children, and can lead to detrimental development and impacted academic success.

The American Association For Caregiving Youth established a model in 2006 to identify caregivers through the public school system and support the needs of youth as well as their families. Researchers in Los Angeles have launched an adapted model to assess for sibling caregivers of children with special health care needs.

This webinar is intended for families, community health workers, and medical professionals and will provide an overview of an interdisciplinary framework to serve the needs of caregiving youth and their families. To register for the webinar, click here. 

RESOURCES

Brief: Treatment For Children With Autism Spectrum Disorder And The EPSDT Benefit

This brief from the National Academy For State Health Policy provides clarification on services to be provided to Medicaid-eligible children with autism and, specifically, the expected adherence to the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit. Examples of strategies currently being used by multiple states to provide necessary treatment services are included. To read the brief, click here. 

American Academy Of Pediatrics: The Neurologist’s Role In Supporting Transition To Adult Health Care

The American Academy Of Pediatrics has endorsed a consensus statement on the pediatric neurologists’ role in helping adolescent patients with neurological conditions transition to the adult health care system. The statement is published in Neurology and includes eight common principles for promoting a patient’s successful transition, with appropriate medical record documentation. The model was developed by a multidisciplinary panel convened by the Child Neurology Foudnation. To read the statement, click here. 

Slide Deck: Understanding Prader-Willi

Created by the Foundation For Prader-Willi Research, these 18 slides are intended to help families educate others on the complexities of Prader-Willi Syndrome (PWS). Topics covered include: causes, challenges, treatments, and the progression of people with PWS from infancy to adulthood. The foundation suggests using this slide deck if you’re looking to raise awareness about PWS in your community, or if you’d just like help starting the conversation. To download the slides, click here.

Tools To Support Organizations With Enrolling Remaining Uninsured Children

California has successfully reduced the number of uninsured children from nearly two million to under 100,000. Aligned with Medi-Cal’s 50th anniversary, Children Now released new materials to encourage the remaining population to enroll. To download a customizable health coverage outreach poster, click here (English, Spanish, and Chinese). To download a timeline that shows the progress of children’s health insurance since the 1990’s, click here.

Related: Read a 50-state report from The Georgetown University Center For Children And Families which found that the children’s health coverage rate is now at a historic high of 95%.

OPPORTUNITY FOR INPUT

Stakeholder Listening Sessions To Help Develop The National Institute On Disability, Independent Living, And Rehabilitation Research’s Long-Range Plan

The NIDLRR is mandated by Congress to create a new long-range plan every five years, and they’re seeking stakeholder input to help inform future funding priorities and strategic direction. Three meetings have already taken place, and two remain on Nov. 18 and Dec. 5. For information on attending by phone, click here.  

WEBINARS

Archived Webcast: Empowering Cystic Fibrosis Care From A Young Age

Sponsor: The Boomer Eaison Foundation

Click here to watch the webcast.

Webinar Series November 3-17: Affordable Care Act Eligibility And Enrollment Issues

Sponsor: Center On Budget And Policy Priorities

More information and registration here.

November 2: Depressed Mood In Autism Spectrum Disorder

Sponsor: Interactive Autism Network

More information and registration here.

November 2: Strengthening Collaboration Between Schools And Hospitals In The Management Of Chronic Conditions: Taking Hold Of Opportunities

Sponsor: National Association Of Chronic Disease Directors

More information and registration here.

November 2: An Introduction To The Child Health Patient Safety Organization

Sponsor: Children’s Hospital Association

More information and registration here.

November 3: Venous Thromboembolism In Children And Young Adults: State-Of-The Art In Diagnosis, Treatment, And Prevention

Sponsor: National Blood Clot Alliance

More information and registration here.

November 9: Beyond Checklists: Care Planning For Children With Special Health Care Needs

Sponsor: Lucile Packard Foundation For Children’s Health

More information and registration here.

November 9: Maximizing Enrollment In Maternal Child Health: Strategies To Address Challenging Outreach And Enrollment Situations

Sponsor: Association Of Maternal And Child Health Programs

More information and registration here.

November 9: Cognitive Behavioral Intervention For Tics: Information For Families

Sponsor: Tourette Association Of America

More information and registration here.

November 15: Implementing Public Health Genomics In Your State: Resources From The CDC Office Of Public Health Genomics 

Sponsor: Genetic Alliance

More information and registration here.

November 15: The Potential Role Of Epigenetics In Sex Differences In Autism

Sponsor: Autism Science Foundation

More information and registration here.

November 16: Caregiving Youth: A Community-Based Framework For Identifying And Supporting A Hidden Population

Sponsor: Family Voices Of California

More information and registration 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.

ARTICLES

I Don’t Want To Be Inspiring

Autism Spectrum News Fall Edition: The Unique Needs Of Girls And Women With Autism

National Data Reveals Just How Hard Foster Care Is On Children’s Health

One Mom’s Shopping Cart Invention Is Helping Special Needs Kids, Seniors

For People With Disabilities, Getting Dental Care Can Be Difficult

Disability No Reason To Deny Organ Transplants, Lawmakers Say

Disabled And Disenfranchised: Families Fight To Restore Voting Rights

Her Toddler Suddenly Paralyzed, Mother Tries To Solve A Vexing Medical Mystery

Voters With Disabilities Fight For More Accessible Polling Places

There’s A Shortage Of Child Psychiatrists, And Kids Are Hurting

CMV Is A Greater Threat To infants Than Zika, But Far Less Often Discussed

An Alternative To The EpiPen Is Coming Back To Drugstores

Leaving Your Pediatrician? Here’s How To Choose Your Next Doctor

Can A Spoonful From Pepsi Help The Medicine Go Down?

The New Focus On Children’s Mental Health

FVCA presented Laurie Soman, director of the Children’s Regional Integrated Service System (CRISS), with a resolution from Senator Loni Hancock’s office in recognition of her 20 years of leadership as the director of CRISS and lifelong service to children and youth with special health care needs (CYSHCN). As the director of CRISS, a 27-county collaborative that works to create a seamless system of care for kids in California Children’s Services (CCS), Laurie spearheaded the first statewide family-centered care survey, a CRISS durable medical equipment survey, and a CRISS maintenance and transportation survey for CCS.

In addition to her work with CRISS, Laurie is the manager of policy analysis at Lucile Packard Children’s Hospital where she specializes in improving access to care for children with special needs, the project director for the CCS Medical Advisory Committee, a key stakeholder on the statewide CCS Redesign Advocacy Group, and a team member at the Alameda County Mental Health Initiative (the list goes on)!

We spoke with Laurie about her vast experience with systems of care, family engagement, CCS, and more.

How has the CYSHCN family engagement landscape changed over the years? What have been some other notable shifts in child advocacy? 

There’s now a general recognition in the child advocacy community of not just the importance of family involvement, but the absolute necessity of it—this took a while to build. In terms of my own work, we didn’t initially involve families at CRISS. It took us a couple of years. That was the beginning of what I like to call the three-legged stool: you want to work with programs and providers, but you also need family and youth input.

In decision making, families need to be involved at every point along the way. Current research shows that as far as board representation, there needs to be a critical mass of at least three people from an underrepresented population on a board for their voices to be heard—there must be multiple family representatives on boards or advisory councils. Family members can’t just be plucked out—they have to be backed by an organization so they’re representing more than personal experience. So you have (power in) numbers, educated parents, and parents who are supported by an organization. Those things have become very critical.

Interest among the larger child advocacy community, in terms of attention to kids with complex special health care needs, has grown a lot over the past few years. With regard to CCS issues, there’d always been five key organizations at the table. This year, as we worked on SB 586, Senator Hernandez’s bill concerning CCS redesign, we knew we needed to build a larger coalition. I’m really surprised and proud of what we’ve been able to build over the last few years.

What are some issues with care coordination you’ve observed?

In California, we’ve divided our systems so clearly. We have medical, mental health, behavioral health (in terms of autism service), developmental health, and special education. Each of these segments may have a care coordinator, but they only manage their one particular piece. So, individual family members end up assuming the role.

I definitely see some steps forward with both systems and advocates wanting to make change. We can spot places around the state where care coordination is more widely recognized as a problem because families are driving the point home that they’re the ones who get stuck taking care of things.

At the state level, there’s a sense that perhaps the siloing of the different systems isn’t the most effective or cost-efficient way to do business. For example, Senator Pan’s Select Committee On Children With Special Needs is explicitly interested in coordinating across the multiple systems—even breaking down some of the walls separating these systems.

How can parents get involved on behalf of CYSHCN?

All of the children’s hospitals are setting up family advisory committees and have family-centered care programs, and that’s all relatively new. You might have the most wonderful medical care, but is it organized in a way you can use easily? Is the experience optimal? Providers know having families involved is the right thing to do, and it ultimately results in better care and outcomes. Families really had to struggle and push for a while, but providers are now seeing how humane and correct it is for them to be involved.

How can we ensure a smooth transition for the children moving from CCS to Med-Cal managed care plans next year and that all families are informed?

The state is responsible for creating timely, understandable, and correct material any time a change is made. The question from an organizational standpoint is: is the timing going to be good enough? Organizations are saying that we need to get this information out now. The plans want to create their own materials as well, and they’re waiting for the official word from the state.

Family organizations should continue meeting with the plans and providing family input to ensure that perspective is considered. There’s also going to be a real role for organizations to make sure families are aware of their rights. For instance, families will have a 90-day window to elect to keep their child’s CCS nurse manager. I think there’s going to be ongoing monitoring we’ll all need to participate in once SB 586 rolls out. Up until now, we’ve been dealing with a state-level program. Now, the responsibility falls on individual plans.

What’s one quirky thing you want people to know about you?

I like to fix things. I used to be a cabinet maker and had a business in Berkeley for years. I got in trouble as a kid because I would always take things apart. My grandparents had one of those old, heavy phones. I thought it was fascinating, so I took the whole thing apart when I was 4 years old and then put it back together.

This newsletter was sent October 18, 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.

NEWS

Request For Applications: Training Of Trainers Workshop For CA Organizations Serving Children With Special Needs

Family Voices of California is extending an invitation to California organizations serving families of children with special needs to send one representative to a two-day Project Leadership Training-of-Trainers Workshop in San Francisco or Los Angeles in January 2017. Project Leadership is a parent advocacy training whose overall goal is to increase the number of family members of children with special health care needs who are prepared and supported to become advocates for health care policy and service improvements. Please see the attached application for details. Project Leadership is funded by the Lucile Packard Foundation for Children’s Health. To review the request for application, click here.

Anti-Bullying Series Features Kids With Disabilities For Bullying Prevention Month

As part of October’s National Bullying Prevention Awareness Month initiated by the PACER Center, StopBullying.gov is taking this week to focus on how bullying can impact children and youth with disabilities by featuring youth stories on their blog. For more information on other populations who will be highlighted during this campaign, click here.

Related: Special needs bullying toolkit for parents, teachers, and students

Related: Bullying Often Triggers Fight Response In Kids With Disabilities

Related: October 26 webinar from Second Step: “Mean” Behavior And Aggression In Early Childhood: The Origins Of Bullying. More information and registration here.

Hillary Clinton And Donald Trump Answer Four Key Questions About Children’s Health

Presidential nominees Hillary Clinton and Donald Trump have submitted answers to four American Academy Of Pediatrics questions on children’s health as part of the AAP’s #VoteKids campaign. To read their answers, click here.

Related: Snapshot of where nominees stand on seven health care issues

Related: Oct. 28 webinar from the Center For Health Journalism: Future Of U.S. Health Care

RESOURCES

The Kaiser Family Foundation’s 50-State Medicaid Budget Survey

The Kaiser Family Foundation released its 16th annual Medicaid budget survey which provides an in-depth examination of the changes taking place in Medicaid programs across the country. It focuses on trends in enrollment and spending growth, developments in eligibility and enrollment policies, how states are using managed care, reimbursement rates and prescription drug costs, and payment and delivery system reforms. For the full report, click here, and to watch the recording of a briefing discussing the survey’s key findings, click here. 

Related: States Increase Cost Controls To Manage Medicaid Growth

State Of Sickle Cell Disease: 2016 Report

The recently-formed Sickle Cell Disease Coalition has released their 2016 report which encompasses four priority areas: access to care in the United States, training and professional education, research and clinical trials, and global issues related to sickle cell disease. To read the report, click here, and to review a list of priorities, click here.

Related: Scientists Correct Mutation That Causes Sickle Cell Disease

Policy Data Brief: Access To Durable Medical Equipment

This brief from the Christopher & Dana Reeve Foundation identifies the primary barriers to accessing needed durable medical equipment and how to ensure that people can obtain what they need. The brief indicates that lack of insurance is not the primary reason people are unable to access adaptive equipment as 87% of people who reported problems were insured. To read the brief, click here. 

OPPORTUNITY FOR INPUT

Five ABLE Act Stakeholder Meetings Set For Alameda County, Survey Seeks Input

The ABLE Act allows people with disabilities (acquired before the age of 26) to save up to $100,000 instead of $2,000 while still receiving Social Security Income or other benefits. Prior to the launch of ABLE accounts in California, the CalAble Board needs community stakeholder input. For more information on meeting dates and locations, click here. If you can’t make it to a meeting or live elsewhere, please complete this survey. 

Related: ABLE Act Q&A for California residents

Related: Proposed Changes To ABLE Act Draw Opposition

WEBINARS

October 18: Opportunities For Employment For Individuals With Down Syndrome

Sponsor: National Down Syndrome Society

More information and registration here.

October 18: Recovery From Schizophrenia With And Without Medication

Sponsor: Brain And Behavior Research Foundation

More information and registration here.

October 19: Inclusion Works—For Business, Opportunity, Innovation, And Health

Sponsor: Association Of University Centers On Disabilities

More information and registration here.

October 20: Parent And School Collaboration For The Dyslexic Student

Sponsor: Learning Ally

More information and registration here.

October 20: Health Care Transition And What It Means For Parents

Sponsor: Family Network On Disabilities

More information and registration here.

October 25: Maximizing Insurance Enrollment In MCH: Strategies To Enroll Hard-To-Reach Populations

Sponsor: Association Of Maternal & Child Health Programs

More information and registration here.

October 26: How Social Determinants Of Health Impact Care Delivery

Sponsor: Children’s Hospital Association

More information and registration here.

October 26: Engaging Men And Dads In Children’s Lives

Sponsors: California WIC Association and First 5 Alameda County

More information and registration here.

October 27: Navigating The Criminal Justice System For People With Disabilities

Sponsor: USC University Center For Excellence In Developmental Disabilities

More information and registration here. 

October 28: Clinton VS. Trump: The Future Of U.S. Health Care

Sponsor: Center For Health Journalism

More information and registration here.

November 1: Empowering People With Disabilities To Recognize And Report Abuse

Sponsor: California Foundation For Independent Living Centers

More information and registration here.

November 2: Obesity And Failure-To-Thrive Concerns In Children With Autism

Sponsors: Johnson Center For Child Health And Development and Autism Research Institute

More information and registration here.

ARTICLES

Cities Named Most Disability-Friendly

The Doctor Isn’t In: Medi-Cal Patients Struggle To Find Primary Care

What Life Is Like For Twins Living With Cystic Fibrosis

In Crisis, Out Of Room: Kids With Mental Illness Forced To Wait For Care

SF Police Officers To Team With Mental Health Workers In Crisis

Autism Speaks No Longer Seeking Cure

UC Davis Joins Large-Scale Effort To Identify Environmental Influences On Child Health

Miracle Makeovers: Rooms Of Hope Gives Dream Spaces To Sick Kids

Early Ed, Crucial For Latino Children With Learning Disabilities

CBS Launches Casting Diversity Initiative

Dismal Dental Care Access For Low-Income Californians Prompt New Solutions

Scarcity Of Mental Health Care Means Patients—Especially Kids—Land In ER

First Cohort Of Colorado Students With Down Syndrome Starts College This Fall

Obama Extends Controversial Program For Rare Pediatric Drugs

Education Department Aims To Improve Transition Outcomes

The Parents Who Jump-Started Autism Research In California

Zika ‘Syndrome:’ Health Problems Mount As Babies Turn 1

This newsletter was sent October 4, 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.

NEWS

FVCA Project Leadership Program Awarded 2-Year Grant To Continue Family Advocacy

We’re thrilled to share FVCA has been awarded a grant from Lucile Packard Foundation For Children’s Health to continue Project Leadership, our advocacy training program that equips families with skills to engage in all levels of public policy on behalf of children and youth with special health care needs. Project Leadership will transition into its fourth year, continuing expansion of statewide trainings as well as ongoing mentorship and support to graduates in their advocacy and leadership roles. To learn more about Project Leadership goals, click here.

Governor Brown Signs SB 586, California Children’s Services Redesign Bill, Into Law

SB 586 (Hernandez) impacts thousands of children in California with special health care needs who will be transitioning into Medi-Cal managed care plans no sooner than July 2017 under the Department Of Health Care Services’ Whole-Child Model. The state hopes this model will streamline care, and SB 586 ensures children will be protected. Governor Brown signed the bill on Sept. 25.

Related: Gov. Brown Signs Bill Allowing Fragile Children To Keep Doctors For 1 Year

Related: Sen. Hernandez’s press release announcing passage of SB 586

Registration Open For 15th Annual FVCA Health Summit & Legislative Day, Feb 27-28

Our annual Health Summit & Legislative Day brings together families, youth, providers, policymakers, advocates, and other stakeholders to identify the issues that affect children and youth with special health care needs. Join us in Sacramento for panel presentations on California Children’s Services, mental health, and more. Build relationships with families and professionals, and learn how to address legislators to implement change. Free for families, $50 suggested donation for professionals. To register, click here, and to view photos from this year, click here. 

State Seeks Public Comment On Plan To Evaluate Two California Children’s Services Pilots

The Department Of Health Care Services‘ proposal for evaluating two CCS pilot programs, Health Plan Of San Mateo and Rady Children’s, is available for public comment until Oct. 19. The draft proposals are under review by the Centers For Medicare & Medicaid Services, and results of the pilots could carry weight for the future structure of CCS. To learn more and provide comment, click here.

RESOURCES

California Ranks #6 In United Cerebral Palsy’s 2016 “Case For Inclusion” Report

In United Cerebral Palsy‘s 2016 “Case For Inclusion” report, California ranks #6 (same as last year) for overall service for people with disabilities and their families. In addition, the state is one of only 15 offering family support to keep individuals with disabilities living at home, and we meet a “top-performing” 90% home-like setting standard. To read the full report and see how other states ranked, click here.

New School-Based Asthma Management Program From The American Academy Of Allergy, Asthma, And Immunology

Seeking to standardize recommendations for school-based asthma management, this program provides useful resources and includes an individualized asthma action plan. Emphasis is placed on care coordination between families, clinicians, and school nurses to improve outcomes. To learn more and read the full report, click here.

Blueprint For Children: How The Next President Can Build A Foundation For A Healthy Future

A new report from the American Academy Of Pediatrics provides recommendations for the next administration on improving the health and well-being of our kids—several of which relate to children and youth with special health care needs. A suggested policy agenda is divided into four subsections: healthy children, secure families, strong communities, and leading nation. In addition, there are separate recommendations for specific federal agencies and departments. To read the report, click here. 

Melatonin And Sleep Problems In Autism Spectrum Disorder: A Guide For Parents

This toolkit from Autism Speaks provides parents with introductory information on melatonin, a common supplement prescribed by doctors to help improve sleep quality in children with autism. The guide explains why melatonin is prescribed, its associated risks, how you can tell if it’s working, and more. To download the toolkit, click here. 

RESOURCE OPPORTUNITY

Individuals With Neurofibromatosis Type 1 Needed For Online Survey Participation

Researchers at the Indiana University School Of Medicine are recruiting individuals ages 5-25 (and their parents) for a study to develop a health-related quality of life instrument for NF1 to better understand and measure how the disease affects patient well-being. Participants must answer online surveys and will be given a $10 gift card for their time. For more information, email research associate Kavitha Nutakki at knutakki@iupui.edu or call 317-278-0534.

WEBINARS

October 5: Advocating For Your Child With Autism

Sponsor: SPARK

More information and registration here. 

October 6: Supporting People With Disabilities To Identify Appropriate Housing

Sponsor: The Arc

More information and registration here.

October 6: Parents’ And Students’ Rights In Special Education

Sponsor: The Johnson Center For Child Health And Development

More information and registration here.

October 10: Rights And Responsibilities As A Parent Of A Child With Disabilities

Sponsor: Family Network On Disabilities

More information and registration here. 

October 11: Population Health–Why It Matters 

Sponsor: Children’s Hospital Association

More information and registration here.

October 12: Income And Health Inequalities And Their Relationship To Population Health Delivery Systems–Research In Process

Sponsor: Systems For Action

More information and registration here. 

October 12: Idiopathic Pulmonary Fibrosis: Progression And What To Expect

Sponsor: Pulmonary Fibrosis Foundation

More information and registration here. 

October 12: Environmental Toxins And Autism Spectrum Disorder

Sponsor: Autism Research Institute

More information and registration here.

October 13: Emergency Evacuation Planning For People With Disabilities

Sponsor: ADA National Network

More information and registration here. 

October 13: Roles Of Families And Skills For Serving On Groups That Make Decisions

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

October 14: Epilepsy And Autism Seen Through The Brain

Sponsor: Autism Speaks

More information and registration here.

October 18: How To Reach And Engage With Hispanic Communities

Sponsor: Child Trends

More information and registration here.

October 19: Prophylaxis, Teens, And Adherence

Sponsor: National Hemophilia Foundation

More information and registration here.

ARTICLES

How The ACA Is Helping Children With Special Needs And Their Families

Report: Voters With Disabilities Are Treated Like “Second-Class Citizens” At The Polls

Complex Child’s October Edition: Accessibility

East Texas Children Lose Therapy Services In Budget Cut Fallout  

Governor Signs Bills To Curb Psych Drugs To California Foster Youth

For Non-English Speaking Families, Getting Health Help At School Proves Elusive

FDA Approves First Drug To Treat Rare Form Of Muscular Dystrophy

What’s ALD? A New Genetic Test Will Identify California Newborns With Disease

Young Boy’s Struggle To Survive Sparked Widespread Push For Drugs For Terminally Ill

When Should Children Take Part In Medical Decisions?

In Mental Health Care, Are We Treating The Symptom But Not The Cause?

With Little Funding And Lots Of Effort, Communities Find Ways To Combat Childhood Trauma

Medicaid Transition Causes Hardship

Texas Supreme Court Allows Medicaid Cuts To Children’s Therapy to Proceed

Children’s Mental Health Directors Face Challenges, Study Finds

Opioid Epidemic’s Youngest Victims Are A Growing Group, New Data Shows

How High Blood Pressure May Hurt Children’s Brains

This newsletter was sent September 20, 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.

NEWS

Why I’m Fighting The State On Behalf Of My Son: Op-Ed Published By FVCA Project Leadership Graduate

In April, FVCA Project Leadership graduates attended an op-ed writing seminar led by Daniel Weintraub of California Health Report. In this published piece, graduate Yuki Baba discusses the trouble she’s had accessing critical physical therapy services for her 8-year-old son, Nate. Although his physicians agree he has cerebral palsy, Nate’s denied physical therapy through California Children’s Services due to the state’s definition of his disability. To read the op-ed, click here.

For more information on Project Leadership, an advocacy training that equips families with the necessary skills to engage in all levels of decision making on behalf of children with special health care needs, click here.

Related: When Autism Ages Out Of The School System, another op-ed written by a FVCA Project Leadership graduate.

RESOURCES

New Family-Professional Partnerships Section In Pediatrics Journal, Articles Needed

The American Academy Of Pediatrics (AAP) journal, Pediatrics, has launched a new section devoted to highlighting how health care professionals, patients, and families can work together to improve child and adolescent health. Articles are to be co-authored by a health care professional and a patient or family member and are accepted on a rolling basis. All articles focused on family-professional partnerships will be made free to the public. 

Sproutflix: Online Streaming Of Films Exclusively Featuring People With Disabilities

With a mix of feature-length documentaries, narratives, short films, animations, and music videos, Sproutflix is home to a diverse collection of movies featuring people with disabilities. Most films can be streamed for seven days for $15, or downloaded for $25. You can save 20% off all titles using the code backtoschool20 (valid until Nov. 1). To browse the films, click here.

New Autism Data Portal From The Child And Adolescent Health Measurement Initiative

Compiling the research from four national surveys, this portal provides easy access to data on the health and well-being of children and families with autism. In addition to helping people learn about family experiences, the portal can be used as an advocacy tool. It also allows you to see how others are using autism data. To access the portal, click here. 

UPCOMING EVENTS

Care Parent Network To Host Star Autism Conference In East Bay Area 

This conference aims to provide information for families who have children with autism ages 0-14 years. This year’s theme, ‘Moving Forward,’ will encompass topics such as how to handle a diagnosis, working with an applied behavior analysis provider, how to run a successful individualized education plan, and more. Date: Oct. 22. Admission: $25 per person, $40 per family. Limited scholarships and childcare stipends available. For more information, click here.

lnland Empire Disabilities Expo: 10-Year Anniversary Celebration In San Bernardino

This expo showcases the services and products that enhance independent living for people with disabilities. Exhibits will explore housing, transportation, advocacy, employment, assisitve technology, education, and youth initiatives. An entertainment lineup features wheelchair athlete Aaron Fotheringham and more.  Date: Oct. 22. Admission: free. For more information, click here.

American Academy Of Pediatrics Annual Conference To Take Place In San Francisco

The AAP National Conference And Exhibition is the largest pediatric technical exhibit of its kind and typically draws more than 10,000 professionals. The three-day conference offers over 350 educational sessions with hands-on learning and networking opportunities. Date: Oct. 22-25. Admission: various price points. For more information, click here, and to review the conference schedule, click here.

*Note: On Oct. 23, the FamilY Partnership Network will host a free networking reception in San Francisco for families who want to learn more about current AAP efforts to promote youth engagement. For more information on attending the reception, click here. 

OPPORTUNITIES FOR INPUT

Medical Cannabis Survey From The Child Neurology Foundation

In advance of their upcoming symposium, “Cannabis In Epilepsy: Clinical Science, Parent And Advocacy Perspectives,” the Child Neurology Foundation is looking for information on where advocacy partners, families, and other stakeholders stand on the topic of medical cannabis and epilepsy. To take the 15-minute survey, click here. Surveys must be completed by Sept. 27.

Innovation Challenge: How Do Social Determinants Shape Our Health Landscape?

Let’s Get Healthy California is looking to highlight innovations that address the factors that shape our health, referred to as social determinants. Anyone with a creative idea about how to promote a healthier California is encouraged to apply. Click here for contest details and information. A webinar for interested applicants will be held Sept. 29. To sign up for the webinar, click here. 

WEBINARS

Archived Webinar: 

Serving Youth With Co-Occurring Developmental And Behavioral Disorders. Click here to watch.

September 22: The First National Survey On Experience Of Care At Hemophilia Centers

Sponsor: Friends Of The National Center On Birth Defects And Developmental Disabilities

More information and registration here.

September 22: Disability Benefits And Cystic Fibrosis

Sponsor: Cystic Fibrosis Foundation

More information and registration here.

September 22: Early Start For Infants And Toddlers

Sponsor: Family Health Outcomes Project

More information and registration here.

September 23: Caring For Children With Sickle Cell Disease

Sponsor: Children’s National Health System

More information and registration here.

September 24: Beginning The Journey: A Family Guide To Navigating Early Intervention

Sponsor: Family Network On Disabilities

More information and registration here (two time options).

September 26: Caring For The Caregiver

Sponsor: Family Network On Disabilities

More information and registration here.

September 27: Zika: What Family Leaders Working In Public Health Need To Know

Sponsor: Family Voices

More information and registration here.

September 28: Maureen Durkin Dissects The Epidemiology Of Autism

Sponsor: Spectrum

More information and registration here.

September 28: The Importance Of Teaching Social Emotional Skills In Early Childhood

Sponsor: Early Childhood Alliance

More information and registration here.

September 28: Predictive Analytics In The Child Welfare System: The Basics

Sponsor: Alliance For Racial Equity In Child Welfare

More information and registration here.

September 29: Are You Concerned About Your Child’s Irritability?

Sponsor: The National Institute Of Mental Health

More information and registration here.

ARTICLES

Passing My Disability On To My Children

Screening Disability In Kindergarten Is Way Too Late, Experts Say

Parents Often Battle To Get Their Children Mental Health Services At School

My Daughter Only Goes To School Twice A Week, But It Means Everything To Us

Health Care Providers Scramble To Meet New Disaster Readiness Rule

Video Exams May Help Kids’ Access To Asthma Care

Language Barriers Impede Treatment Of Children With Special Health Care Needs

Training Police To Better Respond To Autism

Newly Covered By Medi-Cal, Undocumented Children Also Seek Dental Care

High Blood Pressure In Children

More Child Suicides Are Linked to A.D.D. Than Depression, Study Suggests

Parents, Nonprofits Unite To Create More Inclusive Playgrounds

September Edition of ‘Complex Child Magazine:’ Early Childhood

A Gamble On Deep-Brain Stimulation—Plus A Lot Of Hard Work—Gradually Pays Off For Colorado High Schooler

For Kids, Anxiety About School Can Feel Like ‘Being Chased By A Lion’

Camden School Nurses Take On Care Coordination

Child Neglect Claimed In Jerika’s Hospital Battle

Doctors Studied 42 Infants In Brazil With Microcephaly And The News Isn’t Good

Kaiser’s Autism Family Biobank Still Short 3,800 Families

Beginning July of 2017, thousands of children with a variety of medically complex conditions who are enrolled in California Children’s Services (CCS) will transition to Medi-Cal managed care plans.

Under the Department Of Health Care Services’ proposed Whole-Child Model, the state hopes that this transition will better streamline and organize care. SB 586 (Hernandez) was created to ensure that safeguards and protections are in place for children and youth with special health care needs during this period, and that continuity of care remains a priority. To read a list of the bill’s key protections, click here. 

SB 586 awaits Governor Brown’s signature, and Family Voices of California urges you to send a letter of support ASAP to bring to light the critical nature of the bill. To make it easy, we’ve created customizable letters in both English and Spanish:

• For families of children in CCS (English)
• For families without children in CCS (English)

• For families of children in CCS (Spanish)
• For families without children in CCS (Spanish)

For information on how to submit your letter, click here.

This newsletter was sent September 6, 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.

Living With Rett Syndrome: A Glimpse Into Lauren’s Medical Home, Day-To-Day Life

19-year-old Lauren Brady of Whittier is a pretty typical teenager. She loves Justin Bieber, stayed up until 3 a.m. at her high school grad night, and, according to her mom, Sherri, has a “certain standard” when it comes to looking her best. Diagnosed at age 3 with Rett Syndrome, a rare  neurological disorder that affects brain development and causes coordination and speech impediments, Lauren requires a wheelchair to get around, can’t speak, and needs a feeding tube. There are many moving parts to her comprehensive medical home that Sherri, who serves as Lauren’s primary caregiver, works with, often switching between ‘mom’ and ‘educator/advocate’ as Rett is still fairly foreign to many. Sherri’s goal is to stack Lauren’s care team with professionals who don’t view Rett as a hindrance or impossibility, but who are willing to learn from and work with the two of them. 

To read a Q&A with Sherri, click here. 

NEWS

SB 586 Passes Senate Floor, Heads To Governor Brown: Send Your Letter Of Support!

We’re one step closer—SB 586 (Hernandez) is headed to Governor Brown for a final signature! The bill, which passed the Senate floor unopposed on Aug. 29, will ensure continued quality of care for children and youth with special health care needs who are enrolled in California Children’s Services (CCS) as they transition to Medi-Cal managed care plans beginning in July of 2017. SB 586 advocates have tirelessly rallied to ensure that critical protections are in place during this transition. To read a list of the bill’s key protections, click here. For a customizable template letter of support, there are two options below:

• Letter of support for families of children in CCS.
• Letter of support for families without children in CCS.

Save The Date: FVCA Health Summit & Legislative Day To Be Held Feb. 27-28, 2017

Our 15th annual Health Summit will be held in February of next year in Sacramento. More information to come. To view photos, highlights, and presentations from this year, click here.

RESOURCES

Cystic Fibrosis Interactive Drug Development Pipeline And Clinical Trial Finder

The Cystic Fibrosis Foundation has launched a new interactive drug development pipeline and clinical trial finder. The pipeline shows both drugs that are in development and drugs that are currently being used, and you can sort by phases or therapeutic approach. The clinical trial finder lets you view open enrollment in your zip code as well as completed trials with results. To view the pipeline, click here, and to view the clinical trial finder, click here.

Supporting Young Children With Disabilities: Solutions For Improving Food Security

A new brief from Children’s HealthWatch looks at how the high costs associated with raising a child with disabilities can strain the family budget and lead to trade-offs between basic needs. The brief shows that families of children with special health care needs who received SSI were more likely to be food insecure compared with families of children with special health care needs who didn’t. To read the brief, click here.

Medical Home Modules For Pediatric Residency Programs And Educators

The American Academy Of Pediatrics has released five case-based educational modules on key medical home principles for pediatric residency programs. Each module is designed to be incorporated into existing curriculum by program directors and faculty. Collectively, the modules educate residents about the characteristics and benefits of the patient and family-centered medical home, care coordination, care planning, transition to adult care, and team-based care. To view the modules, click here.

EVENTS

10th Annual Celebracion de Familias Excepcionales Conference In Bakersfield

Exceptional Family Center will be hosting its 10th annual conference on Sept. 24 in celebration of the success of families and their children with developmental disabilities. There will be a keynote speaker, educational workshops, vendor displays, and Spanish-speaking presenters. Registration is $110 per attendee. For more information and registration, click here.

WEBINARS

September 7: Pediatric Acute-Onset Neuropsychiatric Syndrome

Sponsor: Autism Research Institute

More information and registration here. 

September 7: Integrating Oral Health And Behavioral Health In Primary Care Settings

Sponsor: SAMHSA-HRSA Center For Integrated Health Solutions

More information and registration here.

September 8: It’s Never Too Early For Vision: Planning For Life After School

Sponsors: TASH and Statewide Parent Advocacy Network

More information and registration here.

September 9: The History And Foundations In Prenatal Alcohol Exposure 

Sponsors: Statewide Parent Advocacy Network

More information and registration here.

September 12: 7 Secrets To A Stress-Free Start To Your Family’s Day

Sponsor: HealthyChildren

More information and registration here.

September 12: Can Transparency Improve Health Care Quality?

Sponsor: Center For Health Journalism

More information and registration here.

September 13: It’s A Great I.D.E.A! The Individuals With Disabilities Act

Sponsor: Family Network On Disabilities

More information and registration: 7am or 9am options.

September 14: How To Evaluate Quality Nutritional Supplements

Sponsors: The Johnson Center and Autism Research Institute

More information and registration here.

September 15: Happier Homework Hours

Sponsor: Learning Allly

More information and registration here.

September 15: Fruition: Families Demonstrating The Adult Lives That Are Possible

Sponsors: TASH and Statewide Parent Advocacy Network 

More information and registration here. 

September 16: Engaging Patients And Families To Improve Sepsis Care

Sponsor: Children’s Hospital Association

More information and registration here.

September 20: A Beginners Guide To Creating Accessible Documents

Sponsor: UNH Institute On Disability

More information and registration here.

September 21: Educational Planning For Students With Cochlear Implants

Sponsor: Laurent Clerc National Deaf Education Center

More information and registration here.

ARTICLES

Looking Out For Our Most Vulnerable Children

In Windsor, Specialized Dental Chairs For Special Needs Kids

On Radical Acceptance (& Not Fixing Your Kid)

How A Broken, $1 Billion State Program Leaves Californians With Cavities

When ‘The Talk’ Is In Sign Language, There Is Clarity And Confusion

Clinic For People With Sickle Cell Disease Opens In L.A.

Gaps In Care For Children With Special Needs Challenge Families

For A 6-Year-Old With Cancer, A Future Staked On Medicine’s Hottest Field

Family’s Experience Helps Korean Americans Change Mindset About Mental Illness

Heartbreaking Images Of How Zika Destroys Babies’ Brains

How Parents Harnessed The Power Of Social Media To Challenge EpiPen Prices

Audit: California Foster Children Overprescribed Psychotropic Drugs

Waiting List Placements May Violate ADA

California Lawmakers Aim To Tackle Rural Health Challenges

Subminimum Wage Changes Catch States ‘Flat Footed’