Advocacy Tools

FVCA seeks to ensure that the voices of families of children with special health care needs are heard at both the State and Federal level when policies, votes, and decisions are made.

We encourage families, professionals, advocates and all those interested in the well being of children with special health care needs to write or talk to their elected officials about the policies and decisions affecting their children.

Who Are Your Elected Officials?

Find out who your elected Federal and State officials are and how to contact them by simply entering your zip code here.

Tips For Writing to Legislators

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Advocacy & Policy Resources

Here are some websites that offer information on policy development and/or legislative initiatives concerning children:

Advocacy And Communications Solutions

American Academy Of Pediatrics

The Arc California

AMCHP

Bazelon Center For Mental Health Law

California Children’s Hospital Association

California Chronic Care Coalition

Children Now

Children’s Defense Fund

Children’s Specialty Care Coalition

Children’s Regional Integrated Service System

Disability Rights CA

Disability Rights Education and Defense Fund

Families USA (view legislative alerts in their Action Center portal)

Family Voices National

Focus on Children Now

Health Access California

Henry J. Kaiser Family Foundation

Hemophilia Council Of California

Institute For Child Health Policy

Lucile Packard Foundation For Children’s Health

March Of Dimes

National Health Law Program

Reed Martin Special Education Law

SEIU California

United Cerebral Palsy

Western Center On Law & Poverty

Wrightslaw

Down Syndrome Conference Recordings, Cochlear Implants, & Autism Survey

This newsletter was sent July 5, 2017. 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.

Save Medi-Cal: Contact Your Senators NOW! 

If the proposed Senate bill to repeal and replace the Affordable Care Act passes, more than 5 million California children would be at risk of losing their health coverage. This legislation would drastically restructure California’s Medi-Cal program in a way that would hit children and youth with special health care needs especially hard.

Although the Senate did not vote on the Better Care Reconciliation Act before the holiday recess, they are prepared to return to the bill upon reconvening July 10. Contacting your Senators to explain why Medi-Cal is critical (and encouraging friends in key states to do the same) is invaluable during this crunch time.

For email templates, phone scripts, social media tools, and other advocacy resources click here.

Family Voices Statement On Senate Health Care Bill

Senate Republican Statements On Health Care Bill

CBO: Senate Bill Cuts Medicaid By More Than One-Third By 2036

Roundup: Analyzing The Senate GOP Health Bill

Little-Noticed Medicaid Changes In Senate Health Plan

Disability Advocates Push Back On Health Bill As Vote Looms

For Millions, Life Without Medicaid Services Is No Option

Parents Of Sick Kids Try To Remind Congress What The Health Care Debate Should Be About

RESOURCES

Study: Use Of Sign Language After Cochlear Implant May Slow  Verbal Development

A new study from the American Academy Of Pediatrics used nationwide data to document verbal skills in children with cochlear implants who received different amounts of early sign language exposure. Researchers found 70 percent of children not exposed to sign achieved spoken language similar to their peers with normal hearing, compared to 39 percent of those who were exposed to sign for 3+ years. To read the study, click here.

Related: two new websites for parents of children who are deaf or hard of hearing launched earlier this year. Hear To Learn offers downloadable activities that focus on language, literacy, math, and music. SignIt is a basic online American Sign Language course that’s free for parents of young children who are deaf or hard of hearing. The self-paced curriculum  is ten units and is estimated to take 25-30 hours to complete. 

Session Recordings Now Available From UCEDD Life With Down Syndrome Conference

The University Center For Excellence In Developmental Disabilities hosted their Life With Down Syndrome: Fulfillment, Health, Education, Advocacy, And Inclusion conference in May and have made all session recordings and accompanying handouts available. The 13 presentations cover topics such as genetics and research development, oral placement therapy, teaching reading and writing, dating, conservatorship, and more. To browse the presentations, click here

Brief: Increasing The Physical Accessibility Of Health Care Facilities 

A new issue brief from the Centers For Medicare And Medicaid Services discusses examples of federal and state-level efforts to increase the accessibility of health care facilities and offers suggestions for improvement. The information suggests that structural obstacles, inaccessible equipment, and restrictive polices and procedures contribute to the widespread health care disparities experienced by people with disabilities. To read the brief, click here

OPPORTUNITY FOR INPUT

Surveys: Emotions Surrounding Diagnosis Of Autism Spectrum Disorder, Improvements For School-Based Services

Researchers at the University Of South Dakota are conducting surveys on behalf of the South Dakota Leadership Education In Neurodevelopmental And Related Disabilities (SD LEND) program. The first survey seeks to understand the wide range of emotions parents experience when their child is first diagnosed with autism. Five random participants will win five $20 Amazon gift cards. The second survey contains questions about school-based services for children with autism and what could be improved. 

Registration Open For Inland Valley Deaf And Hard Of Hearing Family Camp August 11-13

California Hands & Voices is hosting their second annual family camp August 11-13 at Prado Regional Park in Chino. Parents will have the opportunity to attend workshops and discuss concerns related to raising kids with hearing loss while their children participate in a variety of planned activities and campfire events. Weekend cost: $75 (adult), $55 (child). Individual day rates also available. To register, click here.

WEBINARS

Archived Webinar: Coming Of Age In Autism: The Transition To Adulthood

July 6: Preparing For 2018: Overview Of Changes In The Marketplace

Hosted by: The Center On Budget And Policy Priorities

More information and registration here.

July 7: Changes To Special Enrollment Periods (SEPs) And Pre-Enrollment SEP Verification

Hosted by: The Center On Budget And Policy Priorities

More information and registration here.

July 11: Promoting Patient Resilience In Clinical Practice: An Introduction To the Strengthening Families Protective Factors Framework

Hosted by: Connecticut Children’s Medical Center and American Academy Of Pediatrics

More information and registration here.

July 19: Help Prevent Accessible Parking Abuse

Hosted by: United Spinal Association

More information and registration here.

July 25: How Technology Is Empowering Hydrocephalus Patients

Hosted by: Hydrocephalus Association

More information and registration here.

July 25: Focused Ultrasound And Potential New Technologies For Difficult To Control Seizures

Hosted by: Epilepsy Foundation

More information and registration here.

July 27: Expert Series On Addressing Infant Mortality

Hosted by: National Institute For Children’s Health Quality

More information and registration here.

July 27: Feeding Q&A: Beyond The Basics

Hosted by: The Johnson Center For Child Health And Development

More information and registration here.

August 16: Mental Health Parity: Assuring Equal Access To Treatment For Children And Youth In California

Hosted by: Family Voices Of California

More information and registration here.

ARTICLES

Complex Child July Edition: Rare And Interesting Conditions

Survivors Of Childhood Diseases Struggle To Find Care As Adults

In California, 14 Million Reasons to Wonder – And Worry – About GOP Health Care Bill

Their Children Are Dying. So These Families Are Racing To Raise Money for Research No One Else Will Fund

Hoop Dreams: Wheelchair Basketball Is Changing Lives In Afghanistan

Disability Services Threatened Under Proposed Cuts To Medicaid

Stories About Disability Don’t Have To Be Sad

CA Ranks #37 In Child Well-Being, Autism Indicators Report, & Rural Kids & Medicaid

This newsletter was sent June 20, 2017. 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.

The Senate may vote on the proposed health care bill (the Better Care Reconciliation Act) before their scheduled recess the beginning of July. Continued advocacy over the duration of the month is critical to ensure the legislation to repeal and replace the Affordable Care Act does not pass. The bill would completely restructure California’s Medi-Cal program by imposing cuts and caps, threatening care for children with special health care needs.

While we know California’s Senators will be voting against the the bill, it’s still important to let them know you strongly support this decision.

If you have friends or family living in the following key states, consider asking them to contact their own Senators (information on how to do so here): Alabama, Alaska, Arizona, Colorado, Georgia, Indiana, Louisiana, Maine, Missouri, Montana, Nebraska, Nevada, Ohio, Pennsylvania, West Virginia, and Wisconsin.

For email templates, phone scripts, social media tools, and other resources to tell Senators why Medi-Cal/Medicaid is essential, click here.

Related

Disability Advocates Fear Impact Of Medicaid Cuts In GOP Health Plan

House ACA Repeal Puts Children With Disabilities And Special Health Care Needs At Severe Risk

Americans Across The Political Spectrum Agree: Cutting, Capping And Restructuring Medicaid Is A Bad Idea (survey results)

RESOURCES

Report: Medicaid In Small Towns And Rural America: A Lifeline For Children, Families, And Communities

A new report from the Georgetown University Center For Children And Families found that individuals living in small towns and rural areas would be hit the hardest by Medicaid cuts. In 14 states including California, more than half the children living in rural areas are enrolled in Medicaid. The report authors acknowledge that kids would be “disproportionately harmed” should changes to the program be made. To read the report, click here.

Related

Cuts To Medicaid Devastating For Rural Area Kids

California’s Rural Counties Benefit Most From Government Health Coverage

Republican Proposal To Repeal ACA And Cut Medicaid Would Harm Rural Towns

Note: The Centers For Medicare & Medicaid Services recently released a new Medicaid final rule that addresses specialty care access standards for people living in small towns and rural counties vs. those living in larger counties. If you think your family might be impacted by the implementation of this rule or you’ve ever had challenges accessing Medi-Cal in your rural area, please contact FVCA by responding to this newsletter or calling (415) 282-7494.

National Autism Indicators Report: Developmental Disability Services And Outcomes In Adulthood

A new report from the A.J. Drexel Autism Institute found that, as demonstrated in years past, state-provided disability services often fail to meet the needs of adults with autism. The annual publication surveyed an estimated 111,000 people diagnosed with autism spectrum disorder during their transitions to adulthood. Many reported they had a difficult time achieving employment, continuing their education, living independently, and were overall dissatisfied with their quality of life. Although individuals used an average of six different state service, the report notes that families end up shouldering much of the care. To read the report, click here.

Related: Many Adults With Autism Struggling Even With Services

2017 Kids Count Data Book: State Trends In Child Well-Being

The Annie E. Casey Foundation has released their annual data book which ranks how American children are faring based on four markers: economic well-being, education, health, and family and community. Each of these markers includes four separate indicators, such as ‘children in poverty’ or ‘low birth-weight babies.’ California’s overall rank was 37 (36 last year), with an economic well-being rank of 46, education of 38, health of 9, and family and community of 42. To read the report, click here, and to read a summarizing article, click here.

OPPORTUNITY FOR INPUT

Conference: Bridging Pathways To Quality Health Care For People With Special Needs

The San Gabriel/Pomona Regional Center, in collaboration with the University Center For Excellence In Developmental Disabilities, is hosting a multidisciplinary conference for health care professionals on August 12 in Pomona, CA. The conference is designed to enhance community knowledge about working with and caring for individuals with special health care needs. For more information, click here.

Funding Opportunity: Models For Enhancing Home And Community-Based Services

The Administration For Community Living (ACL) is looking to support models of home and community-based services (HCBS) that increase integration and independence for people with disabilities. The models must address the development of a system that uses community and state-level partners to monitor safety and identify risk factors for neglect and exploitation. They must also demonstrate evidence-based practices and innovative strategies that seek to improve services for people with disabilities. For more information, click here.

Related ACL webinar (June 28)The Home And Community-Based Services Quality Framework Development

Upcoming Advocacy Trainings On AHCA And Children With Special Health Care Needs

The Children’s Hospital Association is partnering with various organizations to present a series of skill-building workshops on the proposed American Health Care Act (AHCA) and how family, caregivers, and providers of children with special health care needs can best engage with members of Congress to tell their stories:

June 27, 10am-12:30pm at Valley Mountain Regional Center in Stockton. Register here.

June 29, 7pm-9pm at North Los Angeles Regional Center in Santa Clarita. Register: losangeles@scdd.ca.gov or call (818) 543-4631

June 30, 10am-12pm at Hesperia Library in Hesperia . Register here.

RelatedThe Faces Of Medicaid

Survey: Institute On Disability/UCED Seeks Feedback On Improving Range Of Programs 

The Institute On Disability at the University Of New Hampshire is looking for consumer feedback regarding the scope of their programs and services. To take their satisfaction survey, click here.

WEBINARS

June 21: Rethinking Young Fathers: Policy And Practice Recommendations For Child Welfare Systems

Hosted by: The Center For The Study Of Social Policy

More information and registration here. Accompanying report here.

June 21: Advocacy 101: How To Influence Policies And Improve Lives

Hosted by: Food Allergy Research & Education

More information and registration here.

June 21: Organizing To Protect Health: How Public Health Can Fight Cuts To Medicaid And SNAP

Hosted by: Public Health Awakened

More information and registration here.

June 22: FY2018 Budget

Hosted by: The National Center For Birth Defects And Developmental Disabilities

More information and registration here (replaces the previously scheduled June 12 webinar).

June 22: Potty Time! A Journey To Successful Toilet Training

Hosted by: Down Syndrome Affiliates In Action

More information and registration here ($25).

June 27: Braiding And Blending Funds To Meet Health-Related Social Needs: Lessons From Louisiana And Virginia

Hosted by: The National Academy For State Health Policy

More information and registration here.

June 27: Intro To Fetal Alcohol Spectrum Disorders: The Medical Assistant’s Role

Hosted by: The National Organization On Fetal Alcohol Syndrome

More information and registration here.

June 27: RARE Patient Impact Grant Q&A

Hosted by: Global Genes

More information and registration here.

June 27: Novel Approaches To Public Health

Hosted by: The Public Health Institute

More information and registration here.

June 28: The Home And Community-Based Services Quality Framework Development

Hosted by: The Administration On Community Living

More information and registration here.

ARTICLES

Medi-Cal Cuts Will Eliminate Or Reduce Access To Necessary Services (and the rest of NHelp’s ‘Protect Medi-Cal blog series, found here)

The Myth Of Disability ‘Sob Stories’

I Lost My Voice, But Help Others Find Theirs

On Being Joe’s Mom: Why Inclusion Is Important to This Mother

As She Operated On Babies’ Birth Defects, A Doctor Hid Her Own Diagnosis

California Schools Respond To Students’ Fears Of Trump Immigration Policies

Isabelle Rapin, Who Advanced Concept Of An Autism Spectrum, Dies At 89

Zika In America: One Mother’s Saga

California Nixes Plan To Offer Full Medicaid Benefits To Undocumented Young Adults

Wisconsin Family Stays Together With Help From Medicaid

At Airports, Making Travel Easier For Autistic Passengers

 

CYSHCN Financing Strategies, How AHCA Impacts Children’s Hospitals, & A New Medi-Cal Blog Series

This newsletter was sent May 23, 2017. 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.

Family Voices Hosts Southern California Project Leadership Alumni Luncheon May 6

The Eastern Los Angeles Family Resource Center hosted the Southern California Project Leadership Alumni Luncheon on May 6. Graduates, trainers, and Family Voices council members traveled from Los Angeles, San Bernardino, San Diego, and Santa Barbara for the event. Disability Rights California Emeritus Marilyn Holle, First 5 Los Angeles Program Officer Cristina Peña, and Senator Holly J. Mitchell’s District Director Sydney Kamlager-Dove shared their expertise on advocacy and offered tools for success as parent advocates.

In the breakout sessions, First 5 Los Angeles Government Affairs Officer Ruel Nolledo led the discussion on current policy issues surrounding Medi-Cal, Eastern Los Angeles Family Resource Center Executive Director Yvette Baptiste addressed California Children’s Services, Mental Health Advocacy Services Senior Attorney Nancy Shea spoke on mental health services, and Marilyn Holle discussed developmental disability services. Group members described their own experiences with these services and brainstormed ways for parents to get involved. Graduates enjoyed a networking lunch, and all left feeling inspired to continue their advocacy and leadership work on behalf of children and youth with special health care need (CYSHCN).

For more information on Project Leadership, a training program that introduces individuals to the nuts and bolts of advocacy on behalf of CYSHCN, click here.

RESOURCES

The National Health Law Program Launches New ‘Protect Medi-Cal Funding’ Blog Series

The National Health Law Program recently began a 12-part weekly blog series highlighting the importance of Medi-Cal for various populations within California. The first issue brief addresses how cuts to the program would harm children, and the second brief focuses on women and Medi-Cal. To read the blog, click here.

The Impact Of The American Health Care Act On Children’s Hospitals: Preparing For The Road Ahead

The Chartis Group has produced a white paper analyzing the impact the American Health Care Act (AHCA) would have on children’s hospitals. The paper notes that children’s hospitals have become increasingly dependent on Medicaid as their primary payer, so a reduction in Medicaid funding (as proposed in the AHCA) would reduce access, coverage, and payments for children’s services. In this event, the analysis outlines two possible options: hospitals would have to seek more commercially insured children and limit their Medicaid patients, or they’d have to transform their care models. To read the white paper, click here.

RelatedChildren’s Hospitals Could Lose Billions In Funding Under AHCA And May Need To Change Their Care Models

New And Updated Financing Strategies For Children And Youth With Special Health Care Needs

The Catalyst Center has updated their website to reflect six additional financing strategy categories for children and youth with special health care needs (CYSHCN): behavioral health, benefits counseling, family supports, foster care, inequities, and relief funds. These new categories are based on structured interviews with Title V/CYSHCN programs, Medicaid agencies, and family leader organizations focusing on the financing of care and coverage for CYSHCN. In addition, the Catalyst Center has updated their five existing financing strategies with new examples of innovative polices and practices. To read more, click here.

OPPORTUNITY FOR INPUT

AMCHP Seeking ‘Innovation Station’ Submissions For Emerging Maternal And Child Health Practices In Title V Programs

The Association Of Maternal And Child Health Programs (AMCHP) is looking for submissions of cutting edge, emerging, promising, and best practices in maternal and child health from Title V programs and public health agencies. These examples will contribute to their Innovation Station, a growing online database of what’s working in maternal and child health. For more information on how to submit your practice, click here.

RelatedFamily Voices Of California’s Project Leadership program was highlighted last year as a ‘promising practice’  check it out here.

Help Secure Money In State Budget To Enforce Stricter Psychotropic Drug Guidelines For Foster Children

The National Center For Youth Law (NCYL) is requesting that $80,000 be added to the state budget to help prevent the over-prescribing of psychotropic drugs to foster youth. The money would be used to enforce dosage guidelines and ensure youth prescribed psychotropic drugs have access to psychiatric services in conjunction with medication. The NCYL is urging advocates to call key decision-makers and ask them to support the budget request. For phone numbers and a phone script, click here. For more information, check out the NCYL’s fact sheet here and the state auditor’s recommendations here.

WEBINARS

May 24: Understanding Savings And Investor Choices For ABLE Account Owners

Hosted by: The National Disability Institute

More information and registration here.

May 24: Where Medicaid Stands: From The American Health Care Act To State Waivers

Hosted by: The National Institute For Health Care Management Foundation

More information and registration here.

May 24: Is Hemophilia A Secret? Disclosure In A World Filled With Technology

Hosted by: The National Hemophilia Foundation

More information and registration here.

May 25: Moving Beyond Cooperation: Engaging Families In Health Care Organizations And Practices

Hosted by: The National Center On Medical Home Implementation

More information and registration here.

May 25: Giving Medicine To Kids: Dosing, Droppers, And Other Dos And Don’ts

Hosted by: The American Academy Of Pediatrics

More information and registration here.

May 25: Diversity And Language In Patient Engagement

Hosted by: The Center For Care Innovations

More information and registration here.

May 30: Handheld Technology Supports And Transition To Employment

Hosted by: The Center On Technology And Disability

More information and registration here.

June 8: Promoting Child And Family Well-Being Through Civil Rights Compliance

Hosted by: The Center For The Study Of Social Policy

More information and registration here.

June 13: Toward Rapid-Acting Treatments For OCD

Hosted by: The Brain & Behavior Research Foundation

More information and registration here.

June 20: Supporting Families Impacted By Zika

Hosted by: The CityMatch Learning Network

More information and registration here.

ARTICLES

NPR’s 1A Podcast Recording: Covering Kids After Obamacare

Parents Of Sick Children Fear Trap If States Have Say On ‘Preexisting Conditions’

New Medicaid Waiver Rule Delayed

Trump’s 4T Budget Arrives On Capitol Hill

F.D.A. Warns Of Faulty Lead Testing In Children And Mothers

In California, Some Families Think Twice About Keeping Undocumented Children On Medicaid

My Son Has Down Syndrome: The GOP’s Health Care Bill Scares Me To Death

Who Will Care For Abril? Parents Fear For Their Disabled Child If They Are Deported

Can California’s Most Vulnerable Survive Obamacare’s Replacement?

Racial And Ethnic Disparities Persist In Sudden Infant Deaths

As GOP Tarries On Health Bill, Funding For Children’s Health Languishes

For Mother Of A Child Born With A Severe Heart Condition: The Time To Act Is Now

Study: Many Parents In Need Can’t Find Mental Health Care For Their Children

When The Immune System Thwarts Lifesaving Drugs

FVCA Honors Lifelong Advocate, Child Neurology Transition Tips, & Caregiving Youth

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.

cropped-for-newsletter

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

caregiving-youth

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

brain

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.

prader

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

CCS Redesign Update, ASL Resources, & Back To School

This newsletter was sent August 23, 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

SB 586 (CCS Redesign) Passes Out Of Assembly, Heads To Senate Floor

SB 586 passed out of Assembly on Aug. 19. The bill ensures continued quality of care for children and youth with special health care needs who are currenlty enrolled in California Children’s Services (CCS). Senator Ed Hernandez and his staff, as well as the CCS Advocates Coalition, have worked tirelessly on ensuring there are protections in place for children and their families, providers, and CCS staff. The bill now heads to the Senate Floor, and, assuming passage, to Governor Brown for signing. To read a current version of the bill, click here.

To read a list of the bill’s key protections, click here

Related: California’s Most Fragile Children Hope To Keep Doctors Under New Bill

Updated Data On #HealthForAllKids Medi-Cal Expansion For Undocumented Children

In May, Medi-Cal expanded its coverage to include undocumented children. Since the expansion three months ago, 133,000 new kids have enrolled in full-scope Medi-Cal, raising the total coverage for children to 5.7 million. To view an infographic, click here, and to take a survey on how #Health4AllKids implementation is going in your community, click here.

infographic

Public Meetings Set To Address Regional Center Disparities

The Department Of Developmental Services is looking at disparity in regards to Regional Center purchase of service. They are seeking input from families and stakeholders in order to discover where disparity and cultural challenges exist when using or accessing Regional Center services, and areas of the disabilities service system that need clarification. Hearings will take place Aug. 25 and 26 in Southern California, and more information can be found here. Families can also participate remotely by completing this survey.

RESOURCES

Assistive Technology Resources

  • FreedomTech: a financial loan program that offers loans ranging from $500 to $15,000 for those who need to purchase assistive technology equipment in California.
  • AbleCloset: an organization that allows parents to search for and borrow pediatric special needs equipment within Northern California. Most items can be borrowed for six months, with the exception of speciality equpiment (two weeks to two months).
  • California Assistive Technology Reuse Coalition: a service where you can find gently used assistive technology devices for sale or free, place ads for needed equipment, and borrow items from one of California’s Device Lending Libraries.

American Sign Language Support For Children And Families

The American Society For Deaf Children‘s resource page offers tools for families who’d like to help their child learn ASL. One website, BabySignLanguage.com, has a great list of flashcards with usage tips for successful memorization. The page also includes an ASL rhymes video, a list of recommended apps to help children and adults learn ASL, and a link to MyALSTech, which offers a large online ASL dictionary with conceptual graphics. To access the resource page, click here.

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Health Care Coverage And Financing For Children With Special Health Care Needs: A Tutorial To Address Inequities

The Catalyst Center recently created a tutorial to help maternal and child health leaders, family leaders, and other stakeholders understand and address health care coverage inequities that exist among vulnerable subgroups of children and youth with special health care needs. To view the tutorial, click here, and to watch a webinar that will help you get acquainted with using the tutorial, click here.

Related: The Catalyst Center State at-a-glance Chartbook, a compilation of data on carefully selected indicators of health coverage and financing for children with special health care needs for all 50 states (recently updated). 

Back To School Resources From The Child Mind Institute

The Child Mind Institute has compiled several back to school success kits for parents and educators on children with ADHDsensory processing disorder, and selective mutism. They also have an article on starting school mornings without the stress, which contains tips for parents on how to get your child out the door with the least amount of conflict.

RelatedTips for helping children with epilepsy succeed in schooltips for supporting students with sickle cell disease, and a hands-on activity to identify your child’s strengths.

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Disaster Preparedness: New  PSA For People With Disabilities, Planning Tip Sheet

We Prepare Everyday is a 2-minute video that features people with disabilities taking action to prepare themselves and their families for emergencies. To watch the video, click here. Also, Family Voices National has issued a disaster planning tip sheet that can be downloaded here

WEBINARS

August 25: Tips And Resources For Emergency Personnel: How To Communicate And Assist People With Autism

Sponsor: The Johnson Center For Child Health And Development

More information and registration here.

August 25: What’s New At Learning Ally?

Sponsor: Learning Ally 

More information and registration here.

August 29: The Individual And Emergency Health Care Plan In The IEP And 504 Plan

Sponsor: Family Network On Disability

Two time options: 7am or 11am.

August 30: Engaging Individuals And Families In Shared Decision Making

Sponsor: Substance Abuse And Mental Health Services Administration

More information and registration here.

August 30: Helping Children And Young Adults With ADD/ADHD Succeed And Prosper

Sponsor: Family Network On Disabilities

More information and registration here

August 31: The National Autism Data Center: Building Gauges To Measure National Progress On Transition Outcomes

Sponsor: Association Of University Centers On Disabilities

More information and registration here.

August 31: Mental Health Disparities Research: Cross-Cutting Aspects Of The National Institute Of Mental Health’s Strategic Plan

Sponsor: National Institute Of Mental Health

More information and registration here.

September 1: Preparing Adolescents With Asthma And Allergies For Transitions To Independent Living

Sponsor: Medical Home Chapter Champions Program On Asthma, Allergies, And Anaphylaxis

More information and registration here.

September 8: How To Use Data On A Decision-Making Group

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

September 13: Living Well With ADHD: Scientific Guideposts To Improved Outcomes

Sponsor: Brain & Behavior Research Foundation

More information and registration here.

ARTICLES

South Asian Center For Kids With Special Needs Facing Eviction

What Happens To Developmentally Disabled As Parents Age, Die?

When Children Are Diagnosed With A Sensory Disorder

When It’s Time To Split Up The Family

How Phoenix Became The Most Autism-Friendly City In the World

Schools Told Not To Skimp On Behavior Supports

Bakersfield Couple Battles Daughter’s Cancer-And Insurance Company

Race, Ethnicity Affect Kids’ Access To Mental Health Care, Study Finds

Centering Disabled People In Conversations About Menstruation

New Treatments For Children With Eating Problems

Children With Epilepsy May Experience Vulnerability And Discrimination

Meds May Curb Risky Behavior For Kids With ADHD

Mother Forms A Community Of Families Affected By Rare Syndrome

Stanford: Teen Patients, Clinicians Create Solutions For Medical Issues They Say Need A Fix

Giving Adults With Autism The Skills To Build Independent Lives

Researchers Develop App To Help Children During Painful Medical Procedures

First Aid Training Helps Schools Spot Students With Mental Health Needs

Family Engagement & CSHCN, Rural Health Recap, & An Autism Chartbook

This newsletter was sent August 9, 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.

RCHC

Parents, professionals, and health care providers gathered in Shasta County on July 29 for the Rural Children’s Health Conference, organized by Wendy Longwell, Family Resource Specialist at Rowell Family Empowerment Of Northern California. The day began with a panel on mental health which addressed how access to services has changed for children under Medi-Cal managed care, the issue of families bouncing back and forth between counseling agencies, and how services can be obtained through a child’s school. A few attendees wanted to know where to send their child if he/she was having a mental health crisis as no rural hospital in the area has psychiatric beds that can accommodate children. Via teleconference, Department Of Health Care Services (DHCS) Director Jennifer Kent acknowledged this issue, and said the Department understands that the lack of pediatric beds is a huge problem statewide.

Next, Director Kent spoke on Denti-Cal and what’s being done to improve access for rural children who need specialty dental care. Since so few providers accept the dental program, DHCS plans to implement provider incentive payments to encourage yearly dental checkups, and they’d like to invest another $750 million in dental care overall. Director Kent also mentioned that some rural counties have already applied for a competitive dental pilot program that would allow for innovative care in places like schools.

Following a break for lunch, discussion shifted to California Children’s Services (CCS) redesign with Mira Morton of California Children’s Hospital Association and Amy Turnipseed of Partnership Health Plan. Many attendees expressed they were eager to inform their families about proposed changes to the program as soon as possible. Reimbursement for transportation is a key issue for rural CCS communities, and travel is currently covered under the CCS program even when a child from Shasta County has to cross the border to Oregon for specific care. Attendees wondered what this process would look like under next year’s proposed CCS changes.

The day concluded with a panel on telehealth where representatives from the community spoke on both the successful integration of telehealth programs as well as the struggles. Since access to care is such an issue in the rural north, discussion also centered on strategies for implementing more programs in this underserved area.

To view photos from the conference, click here.

RESOURCES

Webinar Recording And Slides: Family Protections And Continuity Of Care In The New CCS Whole-Child Model

If you missed our July 27 webinar, the full recording and slides are now available on our website. Beginning July 2017, children in select counties will be moved from California Children’s Services to Medi-Cal Managed Care plans. On this webinar, representatives from Western Center On Law And Poverty and Disability Rights California discuss how to keep your child’s existing providers during this switch, your continuity of care rights, protections, how to file a grievance, how to appeal decisions, and much more. To view the recording and slides, visit our webinar archive here

Report: Family Engagement In State Title V Maternal And Child Health And Children With Special Health Care Needs Programs

A new report from the Association of Maternal And Child Health Programs highlights 2014-15 national survey results on family engagement in Title V programs. Through case studies from five states, the report focuses on best practices and challenges within family engagement, or “a belief in the value of the family leadership at all levels from an individual, community, and policy level.” To read the report and learn more about how families can play a critical role, click here.

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What Families Of Children With Down Syndrome Need To Know About The ABLE Act

Attorney and disability rights advocate Stephen Dale spoke on the Achieving A Better Life Experience (ABLE) Act at the National Down Syndrome Congress‘ annual convention. Last year, states became eligible to create ABLE programs that would allow people with disabilities to save money without losing their benefits. To view Stephen’s presentation, click here

Experience Matters: A View Into The Health And Wellbeing Of U.S. Children And Families With Autism Spectrum Disorder

This chartbook, prepared by The Child And Adolescent Health Measurement Initiative, represents one of the first national portraits of children with autism, how they receive their diagnoses, and how their daily lives are impacted. It has information that’s beneficial for families, advocates, policymakers, and researchers and covers topics such as common health problems for children with autism, how parents engage with the health care system to meet their child’s needs, and the role of early detection. To download the chartbook, click here

RelatedAutism Case Training, an American Academy Of Pediatrics-endorsed curriculum that provides real-life scenarios to improve early identification of children with autism, Puberty And Autism Toolkit from Autism Speaks.

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Online Zika Course: What Pediatricians Need To Know

This free course from the American Academy Of Pediatrics provides an important  overview of the Zika virus: where it came from, and how it entered the Western Hemisphere. It also looks at risk factors for infection and covers information regarding Zika’s clinical manifestations, current screening and diagnostic protocols, and follow-up recommendations. To view the course, click here.

RelatedLifelong Care, Heartaches Ahead For Babies Born With Zika In The U.S.Zika Surge In Miami Neighborhood Prompts Travel Warning.

TAKE ACTION

PsychDrugs Action California Campaign Needs Your Support

SB 253 is aimed at ensuring children and youth in foster care are receiving safe and appropriate psychotropic treatment. The bill asks doctors to provide better justification for prescriptions before they’re approved, and also pushes for better trauma care and mental health services within the system. SB 253 moves to the Assembly floor for a vote this week, and the National Center For Youth Law is calling on the community for letters of support. For a sample letter you can easily make your own, click here. Completed letters can be emailed to: leora.gershenzon@asm.ca.gov.

Related: Drugging Our Kids, an in-depth look at how foster care providers are fueling the medication of vulnerable children.

WEBINARS

August 10: Making Accommodation Decisions On The College Campus

Sponsor: Mid-Atlantic ADA Center

More information and registration here.

August 11: Improving Health Outcomes Through Inclusion And Participation

Sponsor: Healthy People 2020

More information and registration here.

August 11: Serving On Groups That Make Decisions: Processes And Tools Groups Use

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

August 18: Pathways To Employment

Sponsor: United Spinal Association

More information and registration here.

August 18: Assistive Technology For Struggling Readers

Sponsor: Learning Ally

More information and registration here

August 19: Introducing The Newborn Screening Public Square

Sponsor: Baby’s First Test

More information and registration here

August 25: Independent Living Centers For People With Disabilities

Sponsors: Children’s Hospital Los Angeles and University Of Southern California

More information and registration here.

ARTICLES

Q&A: How Will Seriously Ill And Disabled Children Fare In Medi-Cal Managed Care?

August Edition Of Complex Child: Advocacy

New Voices In Medical Advocacy Are Often Patients

Medical Studies Involving Children Often Go Unpublished

Timing Of Autism Diagnosis Tied to Choice Of Treatment

California Overhauling Foster Care Rates To Support Family Caregivers

Autistic Oakland Boy Restrained 92 Times In 11 Months By Concord School

Head Start Benefits Children With Disabilities

How Families Of Children With Special Needs Can File Insurance Claims

Aging Poses New Challenges For Those With Special Needs

Barnyard Dust Offers Clue To Stopping Asthma In Children

Schools Reminded Not To Discriminate Against Kids With ADHD

Obama Care Expansion A Bumpy Ride For Rural Health Clinics

Study: 4/5 Kids With Epilepsy Have Other Health Problems

30 Percent Of Children’s Readmissions to Hospitals May Be Preventable

Even With Insurance, Family Of Medically Fragile Child Struggles To Find Home Health Care

Districts That Prioritize Inclusion Cited For High Graduation Rates For Students With Disabilities

Structured, Coordinated Approach Needed For Pediatric Diabetes Patients Transitioning To Adult Care

Transition Q&A, CCS/Whole-Child Webinar, & Care Coordination

This newsletter was sent July 12, 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.

Capture

Born with spina bifida, hydrocephalus, bladder and bowel dysfunction, and clubbed feet, 21-year-old Derek Longwell has had 43 surgeries in his lifetime. His care map spans a vast network of specialists and services that he relies on for treatment, medical equipment, and support. 

Before Derek turned 21, he was worried he wouldn’t have access to the services he needed—this age marks a pivotal period for youth with disabilities as they must transition away from pediatric-centered care and towards a different set of adult providers. For many, this period also includes learning how to advocate for one’s own health care and practicing skills that pave the way for lifelong independence.

Derek was willing to share with us how he and his mom, Wendy, worked together to ensure he was prepared for this change.

How did the transition from pediatric care to adult providers impact your overall experience?

My mom and I worked with California Children’s Services (CCS) and got referrals to Stanford so that we could meet my adult providers ahead of time. I really like my Stanford doctors and I am happy that CCS helped me meet them before I had to switch!

What could be done to improve the transition process?

It’s important to make sure there’s a network of support for those who don’t have someone at home to help them. Transition was a very stressful time for me because of all of the paperwork that came in the mail for me to fill out. Without my mom, I wouldn’t have been able to complete everything.

*Wendy notes that for a more streamlined transition, she believes medical records should be shared with the child’s new plan at least six months in advance, not 90 days. She ran into a waterfall of issues while attempting to get an initial appointment with Derek’s managed care plan, and they didn’t actually receive his records until after he turned 21:  

I got a letter from our new managed care plan stating Derek would be transitioning in two months and that I needed to pick a new primary care physician. I called and emailed asking to set up an appointment. I waited a month and then emailed the people I knew who were higher up in the chain of command. I was then given an appointment four days before Derek’s 21st birthday. When he and I showed up, they told me they sent an email that morning cancelling the appointment. I then gave our managed care plan copies of Derek’s conservatorship paperwork and a list of his doctors since they’d received nothing from the state. I followed up with a couple other calls and several emails before everything was finalized. Now, we’ve been assigned a case worker who lives in Eureka (a 3-4 hour drive vs. a 30 minute drive to get to our CCS office). All of this should have been done before Derek turned 21. He had his 43rd surgery in April—what if he needed an operation directly after his birthday? They wouldn’t have been ready!

During this critical period, family engagement is crucial. How did having the support of your mom, and others, ease transition?

My mom took care of most of the transition issues like medications, supplies, and doctors. CCS made sure I had all new equipment (wheelchair, braces) and that our new house was set up for me with a grab bar, shower bench, etc.

What are some things you do to manage your own care? 

It’s really hard for me to talk to people I don’t know (especially over the phone) unless I have practiced what I am going to say. So far I have taken over calling to get my wheelchair and braces repaired. As far as doctors are concerned, when I have an appointment I talk to my doctor and my mom fills in the spots when I forget something important. We make a good team!

As far as a career or occupation, what are some of your down-the-line goals?

College was very difficult for me with all of my health issues and my learning disabilities. My papa has a wood workshop and I really enjoyed working in it with him when we visited him in Idaho. My mom helped me set up my own shop and I have been learning how to make things. So far I have made gifts for friends and family. I also refinished an aquarium stand and top as my first paid job. My ultimate goal is to open my own store to sell my stuff in.

What advice would you offer to others who are going through transition right now? 

Don’t give up when it gets tough. There are people out there who will help you at places like Rowell Family Empowerment, where my mom works.

Related: check out the Hydrocephalus Association’s Transition Guide For Teens And Young Adults.

NEWS

July 27 Webinar: Family Protections And Continuity Of Care In The New “Whole-Child Model”

This webinar is intended for parents who live in one of the 21 counties where kids in California Children’s Services will be moved to Medi-Cal managed care beginning next year. Presenters from the Western Center On Law And Poverty and Disability Rights California will discuss how to keep your child’s current providers during this transition, your continuity of care rights, and your protections. They’ll also cover what to do if you have grievances, how to get a second opinion, and how to appeal decisions. To sign up for the webinar, click here.

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Assembly Committee On Health Passes California Children’s Services Bill, SB 586

On June 28, the Assembly Committee On Health voted unanimously to pass an amended version of SB 586, a bill intended to streamline care for some medically complex children by moving them from CCS to Medi-Cal managed care programs. The Department Of Health Care Services also released a feedback sheet in response to advocate’s suggested amendments. The bill will now move to the Assembly Appropriations Committee. To read more, click here, and to listen to a recording of the June 28 hearing, click here.

RESOURCES

Recordings From Co-Occurring Developmental Disabilities And Mental Health Issues In Transition Aged Youth Conference

Session recordings and corresponding slides from the Children’s Hospital Los Angeles and University Of Southern California’s Community Education Conference are now available. There are over 15 presentations that cover transition-related topics such as making and keeping friends in young adulthood, excessive restraint and seclusion in schools, competitive  integrated employment, and the impact of health and fitness in the special needs community. To view the presentations, click here.

Hand In Hand: Summer Newsletter From The Down Syndrome Research Foundation

The summer edition of Hand In Hand focuses on behavior and provides tools and suggestions for stopping problematic actions before they turn into bad habits. Topics covered include positive behavior support, addressing stubborn behavior, and more. In addition, the newsletter also highlights a new section of DSRF’s website that’s packed with resources on Down Syndrome and Alzheimer’s Disease. To read the newsletter, click here

HAND IN HAND

WEBINARS

July 13: Preventing Burnout In Parents Of Children With Special Needs

Sponsor: Parent To Parent Of New York State

More information and registration here.

July 14: Medicaid Service Coordination: Getting The Most From Your Child’s Program

Sponsor: Parent To Parent Of New York State

More information and registration here.

July 20: Disability And Rehabilitation Resources

Sponsor: National Information And Referral Support Center

More information and registration here.

July 21: Delivering Culturally Confident Care: A 365 Approach

Sponsor: Home Health Quality Improvement

More information and registration here

July 21: Best Practices For Inclusion

Sponsors: Family Network On Disabilities & Florida Inclusion Network

More information and registration here

July 21: Three Perspectives On Creating Process And Standards For Care Coordination

Sponsor: Care Navigator

More information and registration here

July 27: Coordinating Care For Children In Families With Complex Social And Health NeedsResearch And Practice

Sponsors: Lucile Packard Foundation For Children’s HealthCatalyst Center

More information and registration here.

July 27: Loss, Grief, And Adjustment For Parents Of Children With Special Needs

Sponsor: Parent To Parent Of New York State

More information and registration here

July 28: Taking Care Of Yourself As Caregiver Of A Family Member With A Developmental Disability

Sponsors: Children’s Hospital Los Angeles & University Of Southern California

More information and registration here.

Upcoming Webinar Series: Timeliness In Newborn Screening (July 13-August 31)

Sponsor: New York Mid-Atlantic Consortium For Genetic And Newborn Screening Services

More information and registration here

Upcoming Webinar Series: Serving On Groups That Make Decisions (July 14-October 13)

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

ARTICLES

July Edition Of Complex Child Magazine: Therapies

Teen Left In Limbo By FDA Inaction On Muscular Dystrophy Treatment

Doctors Get Creative To Soothe Tech-Savvy Kids Before Surgery

San Francisco Unified School District Disproportionately Suspends High Schoolers With Disabilities, New Data Shows

Service Dog Case Headed To Supreme Court

Black Children Die At An Alarming Rate In Sacramento County, And Here’s Why

Hope Still Races Ahead Of Evidence In Magnet Treatment For Autism

With Hippotherapy, The Horse Provides The Therapy

New CDC Funding Will Expand Knowledge About Children With Autism Spectrum Disorder

When I Was Diagnosed With Bipolar Disorder, People Thought I Was Cursed

Parents Of Special Needs Children Plan For Two Futures

Insurance Mandates Boost U.S. Autism Diagnoses

A Feel-Good Lip Balm, Created In Her Dorm

Adult Changing Tables, Federal Autism Panel, & Bleeding Disorders

This newsletter was sent June 28, 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

Concord Mom Receives Advocacy Award, State Assembly Recognition For Work On Successful Adult Changing Table Bill

FVCA Project Leadership graduate Alisa Rosillo was given the Roz Wofsy Advocacy Award earlier this month by the Developmental Disabilities Council Of Contra Costa County in honor of her work on AB 662. She also received a certificate of recognition from the California State Assembly in commemoration of her selection as a Roz Wofsy recipient.

Signed into law on October 10, 2015, AB 662 requires that all “commercial places of public amusement” built after January 1, 2020 include and maintain at least one adult changing station for people with disabilities. Businesses that are renovated after January 1, 2025 must also upgrade their grounds to include an adult changing station.

Both Alisa’s children, Max, 15, and Leo, 17, require diaper changes and exceed the size and weight limit of a typical child’s changing table. Inspired by the wish to include her teenagers in regular outings all kids love, Alisa used the skills learned through the Project Leadership course to hone her voice and build her advocacy platform. Conversations and meetings with her local Assemblymember, Susan Bonilla, then led to the formation and passage of AB 662.

No stranger to the world of policy, Alisa worked with then-Assemblymember, now Congressman, Mark DeSaulnier to pass AB 1531 in 2007. This bill raises the fine for those abusing disabled parking spots and ensures these spaces and aisles are visibly painted blue and white.

Alisa’s advocacy also extends to educationshe’s been working within the Contra Costa School District to create K-12 classrooms that allow students who use speech generating devices to access curriculum. Her eldest son, Leo, will be aging out of the school system this year, so she’ll be looking at how these classroom models can continue in a bridge type program over the next four years.

On the changing table front, Alisa now hopes to take the topic to the national level with the backing of Congressman DeSaulnier. “Since bathroom issues are in the national spotlight, the timing is right and the fire is hot,” she says. “We have the momentum to take this to the next level.” For a look at Alisa’s past advocacy work, click here.

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California Ranked #36 In Child Well-Being—Slight Increase From 2015’s #38

A new report from the Anne E. Casey Foundation and Children Now, Kids Count: State Trends In Child Well-Being, ranks California’s overall child well-being at #36 (with #1 being the best). The data examines four sub-sections: economic well-being (#47), family and community (#41), education (#35), and health (#11). The report found there have been fewer child deaths and teen pregnancies, a rise in the number of insured kids, and more high schoolers graduating on time. However, Generation Z children face “the weakest economic prospect in three generations,” stagnant wages, and high college costs. 23% of children live in poverty and 33% of parents lack stable employment—both figures have increased since last year. To read an article pulling further key points from the report (and the report itself), click here.

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GIVE INPUT

Federal Panel On Autism Seeks Public Comment

The Interagency Autism Coordinating Committee is looking for input from people with autism, family members, service providers, and advocates as they prepare to revise their strategic plan and update government priorities on autism research, services, and policy for the first time in ten years. The committee addresses seven topics: screening and diagnosis, the underlying biology of autism, risk factors, treatments and interventions, services, lifespan issues/surveillance, and infrastructure—comments should be related to one or more of these topics. To provide feedback, click here for a survey.

Survey: The Parent Experience Of Advocating For Children With Special Needs

California State University, East Bay is conducting a survey on the parent experience of advocating for children with special needs. The results will be used to inform the services and polices that serve this population. Survey participants will be entered in a drawing to win a $50 Amazon gift card. For more information and a link to the survey, click here (Spanish instructions here).

RESOURCES

Sickle Cell Materials Now Available In Spanish And French, New Supplement

The National Center On Birth Defects And Developmental Disabilities recently translated key sickle cell fact sheets into Spanish and French. To access the new materials, click here. Topics include getting screened, supporting students with sickle cell disease, tips for preventing infection, and more. The American Journal of Preventive Medicine has also released a new supplement that covers the state of sickle cell related care in the United States. To read the supplement, click here.

Playing It Safe: Bleeding Disorders, Sports, And Excercise 

This publication from The National Hemophilia Foundation provides information to help children and teens with bleeding disorders safely participate in physical activity. It offers a list of illustrated stretches, safety ratings for many types of sports and activities, recommended strength training excercises, and more. To read the publication, click here.

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Attacking Childhood Asthma: Care Coordination

A new white paper from the Health And Wellness Alliance For Children describes how care coordination played a key role in reducing pediatric asthma emergency room visits by 49% in Dallas, Texas. Three facets helped tie together care coordination: a standardized Asthma Action Plan, the mobile asthma-management app My Asthma Pal, and a community ambassador pilot program. To learn more about how these facets worked together and to read the white paper, click here (you can also create your own Asthma Action Plan and download the mobile app).

New Emergency Preparedness Curriculum For Families Of Children With Special Needs

The Eunice Kennedy Shriver Center worked with an advisory committee of parents of children with special needs to create a curriculum that increases preparedness knowledge and allows for successful planning. The curriculum includes a toolkit, tip sheets, and a template for a personal emergency plan. There’s also resources on how to share information about your child’s unique needs with first responders. To access the curriculum, click here.

WEBINARS

TONIGHT: Taking Control: 12 Things You Probably Don’t Know About Seizures And Epilepsy

Sponsor: Epilepsy Foundation Of Iowa

More information and registration here.

June 29: Top Five Advocacy Priorities For Mended Little Hearts And Children With Congenital Heart Defects

Sponsor: Mended Little Hearts

More information and registration here.

June 29: Rational Pain Management In Children With Chronic Medical Conditions

Sponsor: The American Academy Of Pediatircs

More information and registration here.

June 29: Supported Decision Making And Financial Choices 

Sponsor: The National Resource Center For Supported Decision Making

More information and registration here.

June 30: The National Standards For Culturally And Linguistically Appropriate Services (CLAS) In Action

Sponsor: U.S. Department Of Health And Human Services Office Of Minority Health

More information and registration here.

June 30: The Use Of Health Information Technology To Improve Healthcare Delivery For Children

Sponsor: Agency For Healthcare Research And Quality

More information and registration here.

July 6: Utilizing A Care Manager In A Special Needs Trust

Sponsor: Friends Of Children With Special Needs

More information and registration here.

July 12: Overview Of Application Process For Request For Proposals On “Developing Goals And Strategies To Improve Care Of Children With Chronic And Complex Health Conditions”

Sponsor: The Lucile Packard Foundation For Children’s Health

More information and registration here.

July 14: Advancing Health Through Accountable Communities: A Conversation With States

Sponsor: The National Academy For State Health Policy

More information and registration here.

ARTICLES

Families Face Indefinite Wait For Services

Down Syndrome Link Seen As Key To Understanding Alzheimer’s

Facebook Offers Tools For Those Who Fear A Friend May Be Suicidal

Apple To Add Fitness Tracking For Wheelchair Users To Apple Watch

What Life Is Like With Tourette Syndrome

Testing Drugs On Mini-Yous, Grown In A Dish

How To Transition Special Needs Students To The Workforce

No Amount Of Lead Safe For Children: AAP Calls For Stricter Regulations”  

Skateboard Clinic Teaches Kids With Disabilities Life—And Shredding—Skills

As Childhood Diabetes Rates Rise, So Do Costs—And Families Feel The Pinch: Study

Doctors Urged To Address Needs Of Females With Disabilities

Iowa Family Goes To Capitol Hill To Help Kids With Special Needs

Mom’s Effort Helps Add Defibrillators Throughout Simi Valley

Meet The Man With Cerebral Palsy Redefining ‘Disabled’ In Colombia

Celebrating 20 Years Serving The Chinese American Special Needs Community

Kids With Autism Are Using Google Glass To Learn Emotions

Telehealth Helps Diagnose A Potentially Lethal Heart Defect In 9-Month-Old

WEBINAR ARCHIVE

2017

Communicating With Your Children: Developmental Disabilities And Sexuality (November 1, 2017)

Video Recording and Slides

Talking with our young and grown children about sexuality can be a difficult task. As parents and guardians, we often worry that discussing sex grants permission. We also hope our children will be safe from harm when they are in relationships. This webinar will help you become more comfortable discussing sex with your child by covering what topics to address and the most effective ways to talk about this sensitive topic.

Our webinar presenter, Katherine McLaughlin, M.Ed, has been an expert on sexuality and developmental disabilities for over 25 years. She teaches sexuality education to people with DD/ID and trains them to be peer sexuality educators. Katherine is the author of an agency and school curriculum: Sexuality Education for People with Developmental Disabilities, and has developed two online courses: one to train professionals, Developmental Disability and Sexuality 101, and one for parents: Talking to Your Kids: Developmental Disabilities and Sexuality.

Retrofitting The Medical Home For Children With Special Health Care Needs (October 25, 2017)

Video Recording and Slides

This webinar outlines the characteristics of the ideal medical home and what steps are needed to strengthen the infrastructure of this conceptual framework. Webinar presenter Mara McGrath, MPH, shares examples of how she’s worked with pediatric practices to bring them along in this continuum. She also explores some of the most perplexing challenges faced by the “ideal” medical home.

Mara McGrath, MPH, has been a health policy analyst for Lucile Packard Children’s Hospital at Stanford for the past 16 years. She currently coordinates the Alameda County Medical Home Project and has worked on promotion of medical homes in four additional counties (Recorded October 25, 2017).

Supplemental materials:

The Alameda County Medical Home Project: Resources For Children With Special Needs and Their Families

Primary Care Referrals For Specialty Mental Health Services (Fax Cover Sheet)

Referral Algorithm For Suspected Or Confirmed Autism (Children 0-3)

Talking With Parents About Child Development Concerns: Tips

Mural Photos: One, Two, Three

Medi-Cal Services For Children And Youth With Autism And The Family-Focused Model Of Care (August 23, 2017)

Video Recording and Slides

This webinar outlines the available Medi-Cal services for children with Autism Spectrum Disorder (ASD), the process for getting these services and the proposed Family Focused Model of Care.

Our webinar presenter is Dr. Clayton Chau, Regional Executive Medical Director for the Mental Health Network, St Joseph Hoag Health/Providence St Joseph Health System, Southern California Orange County/High Desert Region.

Mental Health Parity: Ensuring Equal Access to Treatment for Children and Youth in California (August 16, 2017)

Video Recording and Slides

The lack of mental health parity in health insurance coverage has been a form of discrimination that persons with mental disabilities have long experienced. Federal and state law requires insurance companies to provide mental health and substance abuse benefits equal to physical health benefits — this is especially critical at a time when the need for children’s services is so great.

In this webinar, you’ll learn more about federal and state mental health parity laws as well as skill and tools to appeal the the denial of insurance coverage.

Our webinar presenter is Nancy Shea, senior attorney at Mental Health Advocacy Services, a public interest law firm in Los Angeles.

Project Leadership Informational Webinar For Prospective Fall 2017 RFA Applicants (August 3, 2017)

Video Recording and Slides

This webinar provides the background of Project Leadership, an overview of the content and components, the results from its first four years and an outline of opportunities for agencies interested in training implementation during Phase IV of the project, including Training-of-Trainers workshops that will be offered in San Francisco and Los Angeles in fall 2017.

2016

Caregiving Youth: A Community-Based Framework For Identifying And Supporting A Hidden Population (November 16, 2016)

Video Recording

Slides: Introduction

Slides: Part 1

Slides: Part 2

Slides: Part 3

Caregiving youth are children who provide significant assistance to relatives or household members who suffer from physical or mental illness, disability, frailties of aging, or substance misuse. Their responsibilities are similar to those of adult caregivers, although the physical and psychological effects of caring at a young age may have a more complex and detrimental influence on development and academic success. Connie Siskowski, RN, PhD, of 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.

Related video: CNN Heroes Tribute: Connie Siskowski

Related materials: Information about the Caregiving Youth Project / U.S. and international facts about caregiving youthAAP News article on caregiving

Project Leadership Phase IV: Informational Webinar (October 26, 2016)

Video Recording and Slides

This webinar provides the background of Project Leadership, an overview of the content and components, the results from its first three years, and an outline of opportunities for agencies interested in training implementation during Phase VI of the project, including training-of-trainers workshops that will be offered in San Francisco and Los Angeles in January 2017.

Family Protections And Continuity Of Care In The New CCS Whole-Child Model (July 27, 2016)

Video Recording and Slides / Additional Resources

Beginning July 2017, children in select counties will be moved from California Children’s Services to Medi-Cal Managed Care plans. In this webinar, Linda Nguy from Western Center On Law And Poverty and Marilyn Holle from Disability Rights California discuss how to keep your child’s existing providers during this switch, your continuity of care rights, protections, how to file a grievance, how to appeal decisions, and much more.

Movement at the State Capital: Introducing the Senate Select Committee on Children with Special Needs (July 20, 2016)

Video Recording and Slides

This webinar provides an overview of the newly formed Senate Select Committee on Children with Special Needs, chaired by California State Senator Dr. Richard Pan. It summarizes the committee’s leading objectives, recaps key takeaways from the first hearing held Dec. 1, 2015 (read a committee report from this hearing), and outlines the role of family advocates in informing the committee. To watch an introduction video on the Select Committee, click here.

Family Participation In Discharge Planning: Voices Of Patients, Parents, And Adcoates (June 9, 2016)

Video Recording

This lecture with Boston Children’s Hosptial focused on understanding and improving the family experience of discharge.

Legislative Day Advocacy Training 101 (March 4, 2016)

Video Recording

This webinar provides an outline for effectively speaking to legislators and advocating for your child with special health care needs.

2015

FVCA Project Leadership Year 3

Video Recording [wmv] • Slides [ppt]

This webinar provides the background of Project Leadership, an overview of the content and components, the results from its first two years, and an outline of opportunities for agencies interested in training implementation during Year 3 of the project, including a train-the-trainers workshop.

Panelists: Allison Gray, Emelyn Lacayo, Kausha King, Michele Byrnes

Resilience, Coffee, and Community: How Parents Advocate for Children with Special Needs (June 17, 2015)

Recording [mp4] • Slides [ppt]

In this interactive lecture and discussion, Sarah Taylor, MSW, PhD, shared insights from her personal journey in advocating for her 8-year-old super-kid with fragile x syndrome, as well as the experiences of over 300 parents who participated in a study about how they advocate for their own children and others at personal, organizational, community, and policy levels.

Guest presenter: Sarah Taylor, MSW, PhD is an Assistant Professor of Social Work at CSU East Bay. She has presented at numerous national, state, and local conferences and has published in a variety of academic journals.

2014

Medi-Cal and Coverage for Behavioral Health Treatment for Autism (December 3, 2014)

Video Recording [wmv] • Slides [pdf]

Kristin Jacobson, President and Founder of Autism Deserves Equal Coverage Foundation, presents on the new autism treatment coverage benefits under Medi-Cal. This is an introductory Webinar and is appropriate for families interested in accessing services through Medi-Cal as well as staff from family resource centers interested in learning about the benefit so they can help families in their catchment area. Information will be provided on eligibility for services and how to access services and will be relevant for individuals currently receiving BHT through regional centers, regional center clients who are not receiving BHT, and families who are not regional center clients. There will also be information about using the benefit as a primary insurance or as a secondary insurance to cover cost sharing for a private plan. Finally there will be some information for providers interested in becoming Medi-Cal BHT providers.

Tools & Resources from Family Voices to Help You in Your Work with Families of CYSHCN (November 5, 2014)

Video Recording [wmv]  •  Slides [pdf]

Please join us to learn from the experts at national Family Voices about all the fantastic resources available to you to help you in your work with families of children and youth with special health care needs.

Presenters: Bev Baker, Co-Director Family Voices and the National Center for Family and Professional Partnerships; Nora Wells, Co-Director Family Voices and the National Center for Family and Professional Partnerships; Leslie Carroll, Director of IMPACT; Peggy Curran, Consultant to Family Voices.

Our Children Eat Differently: Raising a Child with a Feeding Tube (October 29, 2014)

Video Recording [wmv]  •  Slides (Parent Perspective) [pdf]  •  Slides (Doctor Perspective) [pdf]

Tens of thousands of children in the U.S. depend on feeding tubes to receive the nutrition they need to grow and thrive. Dr. William Berquist, Professor of Pediatrics in Gastroenterology at Lucile Packard Children’s Hospital at Stanford, will focus on the history of feeding tubes, their benefits for children with a range of medical conditions, and the pros and cons of different types of feeding tubes. Michele Byrnes will discuss her perspective as a parent raising a child with a feeding tube and share the resources she’s gathered since her son was diagnosed with failure to thrive as a newborn four years ago.

Presenters: Dr. William Berquist, Pediatric Gastroenterologist, Lucile Packard Children’s Hospital; Michele Byrnes, Mother of a child with a feeding tube and graduate of FVCA Project Leadership Program.

A Conversation about Telehealth and Children with Special Health Care Needs (October 8, 2014)

Video Recording [wmv]  •  Slides [pdf]

What telehealth is; how telehealth can be used to improve access to and coordination of care for children with special health care needs; how Family Resource Centers and others advocates for children can help identify barriers and solutions to wider adoption of telehealth to meet the needs of children with special health care needs.

Presenters: Jacob Vigil, Program Associate, The Children’s Partnership; Mei Kwong, Senior Policy Associate, Center for Connected Health Policy; Project Director, The National Telehealth Policy Resource Center; James Marcin, MD, MPH, Professor, Pediatric Critical Care, UC Davis Children’s Hospital.

Introduction to Medi-Cal Administrative Activities (MAA) (October 1, 2014)

Video Recording [wmv] •  Slides [ppt]

This is the perfect webinar for all Family Resource Centers and their staff.  MAA is an opportunity to leverage public dollars that you are using to do outreach for health services, Covered California, and Medi-Cal. It is a federal reimbursement program for activities you are already doing to get children and families into health services, to coordinate those health services, and to plan to ensure we have the necessary health services for our community.

Presenter:  Gretchen Schroeder, Consultant, HealthReach.

California Children’s Services (CCS) – The Nuts and Bolts of the Program (September 10 2014)

Video Recording[wmv]

Slides:Kathi Smith – “California Children’s Services” [pdf]  •  Kausha King – “ CCS – What Do Parents Say” [pdf]  •  Laurie A. Soman – “CCS: The Nation’s First Program for Children with Special Health Care Needs” [pdf]  •  Mary Doyle – “Nurse Case Management Redesign Project:  Los Angeles County CCS” [pdf]

Please join our CCS panel of experts to learn the nuts and bolts of the CCS program including how California created the first public program for children with special health care needs, how CCS works for CSHCN, innovative strategies for improving the program, what parents think about CCS, and potential changes to CCS over the next few years.

Sickle Cell Disease: Myths and Realities (August 6, 2014)

Video Recording [wmv]  •  Slides [pdf]

Learn about the physical, psychological and social aspects of Sickle Cell Disease as well as treatments and outcomes. Learn how to advocate as a caregiver, a patient with sickle cell disease or as a provider so that emergency department visits are more “successful.”

Presenters: Marsha Treadwell, PhD, Director, Northern California, Network of Care for Sickle Cell Disease; Wanda Williams, Chairperson, Sickle Cell Community Advisory Council.

2013

Diabetes Type 1 - how does it happen, how do we manage it? (September 11, 2013)

Video Recording [wmv]  •  Slides [pdf]

Dr. Saleh Adi will be presenting on Type 1 Diabetes to explain the diagnosis, how it happens and the current treatment available.

Presenter: Dr. Saleh Adi, Clinical Professor of Pediatrics, Director, Madison Clinic for Pediatric Diabetes Benioff Children’s Hospital, UCSF

Healthy Families Transition to Medi-Cal (August 21, 2013)

Video Recording [wmv]  •  Slides [pdf]

This webinar will increase understanding and awareness of the Healthy Families transition to Medi-Cal, service coverage for the children, continuity of care, and adequacy of provider network.

Presenter: Jane Ogle, Deputy Director, CA Department of Health Care Services

Bridging the Gap: Transition from Pediatric to Adult Care for Young Adults with Childhood Onset Chronic Illness (August 14, 2013)

Video Recording [wmv]  •  Slides [pptx]

Researchers from the Stanford Clinical Excellence Research Center will be sharing their transition model and want to hear your thoughts! Their model is focused on the hazardous and unnecessarily costly transition of care for teens and young adults with complex chronic illnesses as they move from the pediatric to the adult health care system.  Their new care model for transition is based on their research which includes extensive conversations with parents, young people, and a wide variety of health care providers.  They are currently in the process of identifying pilot sites to implement the model and evaluate its effectiveness.

Private Insurance Coverage under California’s Affordable Care Act (Covered California) (July 3, 2013)

Video Recording [wmv]  •  Slides [ppt]

Peggy McManus, President of the National Alliance to Advance Adolescent Health, will be discussing her latest research on the benefits and cost sharing requirements under the new California Health Exchange affecting children and youth with special health care needs. Peggy’s research on this topic was funded by the Lucile Packard Foundation for Children’s Health.

Home and Community Based Waivers (Nursing and Institutional Deeming) (June 5, 2013)

Video Recording [wmv]  •  Medicaid Waivers slides [ppt]  •  HCBS Waivers slides [ppt]

This one hour webinar will review home and community based waivers:  how waivers work, who is eligible, what services are received, waiting lists.

Presenters: Kathryn Smith, RN, Dr.PH, Associate Director of Administration, USC UCEDD at CHLA; Elissa Gershon, Senior Attorney, Disability Rights California

Regional Centers and Insurance Companies –Who pays for what services (May 29, 2013)

Video Recording [wmv]

Slides: Katie Hornberger: “The History of SB 946” [pptx]  •  Amy Westling: “Regional Center Response to SB 946” [pptx]

This webinar will review California’s Autism Insurance Mandate – Who is the payer of first resort to cover necessary treatments for children with autism or PDD?

Presenters:  Amy Westling, Senior Policy Analyst at Association Regional Center Agencies (ARCA), Katie Hornberger, Director, Office of Clients’ Rights Advocacy, Disability Rights California, and Janice Milligan, Director of Health Net of California. 

In Home Support Services (IHSS)(May 22, 2013)

Video Recording [wmv]  •  Slides [ppt]

This webinar will cover a brief overview of IHSS, developments in the Oster v. Lightbourne case, recent changes and developments in the IHSS program, and where families may go for help.

Presenter: Maria Fernanda Iriarte, Managing Attorney, Disability Rights California

Educationally Related Mental Health Services (May 15, 2013)

Video Recording [wmv]  •  Slides [ppt]

This one hour webinar helps parents and advocates understand current special education law related to mental health services for students with disabilities.  Parents learn strategies to assist them in advocating for appropriate mental health services for their children.

Presenter: Maggie Roberts from Disability Rights California (DRC)

The Affordable Care Act and Exchange – What are the Specifics? (April 4, 2013)

Video Recording [wmv]  •  Slides [ppt]

On April 3rd, 2013, Lisa Chan-Sawin presented the Affordable Care Act and Exchange Webinar.  Lisa spoke of the specifics of the ACA which included an overview , the timeline of provisions impacting Children Health Benefit Exchanges, California’s implementation of the ACA, pediatric coverage and the uncertain future of the ACA.

Lisa is the Director of Policy & Operations at Harbage Consulting. She has expertise in health insurance regulation, public coverage programs, delivery system transformation and health IT policy, including telehealth and data exchange. 

Getting the Most Out of Your Health Insurance (March 6, 2013)

Video Recording [wmv]

Kristin Jacobson,  President of Autism Deserves Equal Coverage (ADEC) and Member DMHC Autism Advisory Task Force  for SB 946, discussed how the health coverage landscape is changing quickly with the implementation of President Obama’s Affordable Care Act and new state mandates. Insurers in many cases are required to cover behavioral treatment like Applied Behavior Analysis, speech therapy, occupational therapy and other treatments. We learned how to get the most from your health insurance in this informative webinar for families of children with autism and other behavioral disabilities.

2012

What You Need to Know about Changes to MediCal and Healthy Families for Children with Special Health Care Needs (November 7, 2012)

Video Recording [wmv]  •  Slides [ppt]

This webinar presented the important changes in access to health and mental health services that will affect children with special health care needs who have health insurance through MediCal and Healthy Families programs. These are issues that families need to know, since they may impact your child’s services.

Presented by Dr. Renee Wachtel, Developmental-Behavioral Pediatrician. Dr. Wachtel has been caring for children with developmental disabilities and behavioral issues for many years, and serves as chair of the American Academy of Pediatrics (Chapter 1) Committee on Developmental and Behavioral Pediatrics and chair of the Bay Area Autism Consortium.

Educationally Related Occupational & Physical Therapy Services (October 3, 2012)

Video Recording [wmv] •  Slides [ppt]

Learn how educationally related therapy is different from medically related therapy, and how to ask for these therapies from the school district if you feel a child needs them. Learn when an evaluation by a school therapist is warranted and what kinds of skills and activities a school based therapist may be able to provide. Carol Cohen, Family Health Liaison, Family Resource Network (FRN Alameda County) and Pat Louie from Alameda County California Children’s Services (CCS) will discuss these topics as well as how CCS provides medically necessary therapy and how this therapy should be documented in a child’s Individualized Education Plan (IEP).

CCS Medical Therapy Program Means Test - The Pros and Cons (May 2, 2012)

Changes to Medi-Cal and IHSS (Jan 4, 2012)

Slides [ppt]

60 minute webinar overview of changes to Medi-cal and IHSS due to California budget cuts. Dr. Smith will discusses how the state trigger cuts may impact those systems and what we can do now to have a positive impact.

Presenter:Dr. Kathryn Smith has over 35 years experience caring for children with special health care needs, including those with neurodevelopmental disabilities. At Children’s Hospital Los Angeles (CHLA), she serves as the senior Autism Treatment Network site coordinator, nurse care manager in the Boone Fetter autism clinic, co-director of the Spina Bifida Center, associate director for administration at the University Center for Excellence in Developmental Disabilities at CHLA, and policy concentration leader within the Leadership Education in Neurodevelopmental Disabilities (LEND) training program at the UCEDD. She has a strong interest in child health policy, quality improvement and research in these areas.

2011

The Autism Insurance Coverage Act: What Does it Mean for Families? (December 2011)

Video Recording [wmv]

Are you curious about what the passage of the Autism Insurance Coverage Act means to your family or the families that you serve? Please join us for a free 60 minute webinar overview of the Act and the implications for families in California. What can we do to be proactive? What do we do if there are challenges in accessing our insurance coverage? Kristin is the founder of Autism Deserves Equal Coverage and was the principal advocate involved with the drafting and passage of SB 946, representing the Alliance of California Autism Organizations. Sally works with Kristin as an advocate. This webinar will cover the vision behind the Act, how it came to be and the changes that we can expect in California.

Presenters: Sally Brammell, Kristin Jacobson

Medi-Cal 101: Covering the Basics (August 2011)

Video Recording [wmv]  •  Slides [pdf]

This webinar will highlight Medi-Cal basics. What services does Medi-Cal provide in California? This webinar will provide information on Medi-Cal eligibility, services provided by Medi-Cal and Institutional Deeming. The webinar will include an opportunity to ask questions. Featured presenters: Kathryn Smith, RN, MN

Children With Pre-Existing Conditions: Connecting Kids with Coverage in California (July 2011)

Video Recording [wmv]  •  Slides [pdf]

Handout: Children with Pre-Existing Conditions – Fact Sheet [pdf]

This webinar will highlight health insurance issues and options for children with pre-existing health conditions in California. Using state and county data, outreach resources from the 100% Campaign, and organizing efforts to improve the lives of children, this webinar will the describe: (1) the existing need for and barriers to coverage, (2) new opportunities to connect uninsured kids with pre-existing health conditions to coverage, and (3) ways to further inform policymakers about the importance of children’s coverage. The webinar will culminate in an interactive discussion about how to improve coverage for children with pre-existing conditions and best tailor outreach efforts to have the greatest impact on this population of children.

Presenters: Mike Odeh, Health Policy Associate, Children Now

Developing and Integrating Patient and Advisory Councils (May 4, 2011)

Video Recording [wmv]  •  Slides [ppt]

Handouts: Example 1  •  Example 2

Covers how patients and families can work together with healthcare organizations to improve care for children and youth with special health care needs. This webinar is for both families and health care organizations—whether you are a family member of a hospital who wants to get more involved and provide input into patient care or a healthcare organization who would like to engage families. Learn how to start, sustain and provide training to Advisory Councils or find out if your health care organization already has one.

Presenter: Libby Hoy, Founder, Patient and Family Center Care Partners (www.pfccpartners.com)

The Importance and Benefit of Participating in Autism Research: Perspectives of a Leading Scientist and Parents of Children with Autism (April 6, 2011)

Video Recording [wmv]  •  Slides [ppt]

Handouts: Overview of Autism Research Program  •  Flyers for Autism Research Program (in English and Spanish)  •  Autism Recurrence Fact Sheet  •  Thimerosal Fact Sheet

This presentation was in honor of Autism Awareness Month and featured Dr. Lisa Croen, Senior Research Scientist and Director of the Autism Research Program at Kaiser Permanente Division of Research and parents of children with autism spectrum disorders (ASD). It presents the state of autism research, two high profile, national studies, SEED and EARLI, and the importance of families participating in autism research. Topics covered include: how researchers are seeking to discover the genetic and environmental risk factors for ASD and how families can contribute to science by participating in one of these studies.

Please visit the Autism Research Program website www.autismresearch.kaiser.org to view videos and and new materials including the 2nd Edition of the Autism Parent Handbook.

Presenters: Lisa Croen, PhD,Director Autism Research Program and Senior Research Scientist, Division of Research, Kaiser Permanente; Vanessa Wallace, Mother of 4 children with an autism spectrum disorder; Member Autism Research Program Community Advisory Board.

Health Care Reform:What it means for children and youth with special health care needs (February 2nd, 2011)

Video Recording [wmv] •  Slides [ppt]

Handouts:

How health care reform benefits children/youth with special health care needs, federal actions to implement the reform law, and what can be expected in the future. REMEMBER: You Have Protections if Your Child is Denied Coverage. Remember, the health care law means that no child should be denied insurance for health reasons. If your child is denied coverage for any reason, call the state health insurance hotline at 1-888-466-2219 or visit the website.

Presenter: Janis Guerney, Family Voices National

Improving Access For Children With Epilepsy (January 5, 2011)

Video Recording and  Slides 

Handouts: Seizure Description Tool  •  California Policy Brief  •  Teacher’s Guide  •  Epilepsy Parent Resource Guide  •  Epilepsy Parent Resource Guide (Chinese)  •  Epilepsy Parent Resource Guide (Farsi)  •  Medication Substitution Sheet  •  Medication Substition Sheet (Spanish)  •  Epilepsy Seizure Access Plan

Project Access is a four-state collaboration that addresses improved access to health care services for children with epilepsy or seizure disorders in rural areas. This project brings together Children’s Hospital Los Angeles with a number of University Centers for Excellence in Developmental Disabilities (UCEDDs) and family-focused community nonprofits (including Epilepsy Foundation Affiliates and Family Voices).

2010

Autism And Health Insurance: Making Your Benefits Work For Your Child (December 1, 2010)

Video Recording and Slides 

Karen Fessel of The Autism Health Insurance Project discusses how to make your health benefits work for your child with autism. 

Handouts: 

Department of Managed Health Care Complaint Form

Making Your Benefits Work Information Sheet

Navigating California Children's Services: The Financial Process And Health Insurance Plans (November 3, 2010)

Video Recording and Slides 

This webinar will help you understand the detailed financial relationships between the programs covered by California Children’s Services and insurance plans.

Understanding Service Delivery Models For Physical And Occupational Therapy: An Overview Of PT And OT Service Models Used by California Children's Services And School Districts (October 6, 2010)

Video Recording and  Slides

This webinar covers the continuum of service delivery models used to provide physical and occupational therapy to students, the focus of each model, and how teachers and peers may participate in these services.

Health Care Connections: A Resource For Understanding And Navigating Health Care For Children And Youth With Special Health Care Needs (September 1, 2010)

Video Recording and  Slides 

This webinar offers a training tool for providing health care to CYSHCN, understanding a health care plan, and working with providers.

Handouts:

Health Care Connections Manual (English, Spanish & Chinese)

Addendum/Updates (March 2010)  •  Update to Manual: P51-55  •  Update to Manual: P56-62

Know Your Health Care Plan

 Denti-cal Information

The Medicaid Waiver Program: A Primer (August 4, 2010)

Video Recording and Slides 

Why would Regional Center staff ask you to enroll in the Medicaid Waiver program? Randy Laya and Suzanne Butler from Regional Center Of Orange County provide the ins and outs of this important program. This webinar covers eligibility criteria, purpose of the program, and institutional deeming for Medi-Cal. 

What Will Health Reform Mean For Children And Youth With Special Health Care Needs? (July 7, 2010)

Video Recording and Slides

This presentation by Edwin Park from the Center For Budget And Policy Priorities examines key coverage provisions included in the recent federal health reform law that would likely benefit children and youth with special health care needs in California. 

Update: Budget And Bills Affecting Children And Youth with Special Health Care Needs (June 2, 2010)

Video Recording and Slides 

Jessica Rothhaar from Health Access California covers the proposed premium increases for Medi-Cal and California Children’s Services, pre-existing condition exclusions and insurance, and upcoming opportunities and strategies to impact the budget.

First 5 And Developmental Services: Building Partnerships For Our Youngest Children (May 5, 2010)

Video Recording and Slides

Sherry Novick from First Five Association Of California discusses recent budget cuts within early start programs and the Department Of Developmental Services. She talks about how to avoid pitting children’s programs against each other, and how Regional Centers and First Five Commissions can all collaborate.

Getting Basic Health Services And Medically-Necessary Treatment From Your Health Plan (April 7, 2010)

Video Recording and Slides 

Lyn Gage and Susan Burger from the Department Of Managed Care discuss how to access help when you have questions about your health plan, and what to do if your requested treatment or service has been denied, delayed, or modified.

The Lanterman Act: Changes In The Law (February 3, 2010)

Video Recording and Slides 

How do the recent cuts to Regional Centers, In-Home Supportive Services, Supplemental Security Income, and Medi-Cal impact services for children and youth with special health care needs? What new information is available? Watch this presentation by Katy Lusson, client’s rights advocate at Disability Rights California.

H1N1: Preparing For The Flu Season (January 6, 2010)

Video Recording and Slides 

Are you overwhelmed or confused by H1N1 information? Would you like to understand how the spread of the flu may impact your family, workplace, and your community? Elisabeth Whitney, program coordinator at SF Card, discusses the impact of H1N1 and what you can do about it. 

2009

Addressing The Multiple Issues In Collecting Race, Ethnicity And Language Data: Rationale, And Promising Practices (December 2, 2009)

Video Recording and Slides 

Vivian Jackson of the National Center For Cultural Competence discusses the rationale and promising practices behind data collection. 

Impacting Legislators: Discuss New Research (November 4, 2009)

Video Recording and Slides 

Tony Anderson, executive director of the ARC Of California, discusses new research in the field.

Nutrition: The Big Picture (Eating, Pooping And Growing) (October 7th, 2009)

Video Recording and Slides 

Hope Willis, program director of Dietetic Internship at the University Center For Excellence in Developmental Disabilities, talks about pediatric nutrition. 

Epilepsy 101: Epilepsy And Seizure Disorders Resource Guide (August 5, 2009)

Video Recording and Slides

William Stack, associate director of the Epilepsy Foundation of Northern California, gives a run down of pediatric seizures and prevention. 

Medicaid Waivers Training (July 1st, 2009)

Video Recording and Slides

Kathryn Smith, assistant professor Of clinical pediatrics in the Keck School Of Medicine at the University Of Southern California and the associate director for administration at the University Center For Excellence in Developmental Disabilities discusses various Medicaid waivers. 

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