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

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.

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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

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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

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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.

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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.

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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.

school

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.

Alisa2

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.

kids count

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.

soccer

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

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 [wmv]  •  Slides [ppt]

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).

Presenters: Cary Kreutzer, USC UCEDD, Children’s Hospital Los Angeles; Bill Stack, Epilepsy Foundation Northern California

2010

Autism and Health Insurance: Making your benefits work for your child (December 1, 2010)

Video Recording [wmv]  •  Slides [pdf]

Handouts: Department of Managed Health Care Complaint Form  •  Making Your Benefits Work Information Sheet

Presenters: Karen Fessel, Dr PH, Executive Director and Founder, The Autism Health Insurance Project; Feda Almaliti, Autism Health Advocates

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

Video Recording [wmv]  •  Slides [ppt]

This webinar helps you understand the detailed financial relationships between the programs covered by California Children Services and insurance plans.

Presenters: Sue Johnson and Terry Enns (Alameda County California Children Services)

Understanding Service Delivery Models for Physical and Occupational Therapy: an Overview of PT and OT Service Models Used by California Children Services and School Districts (October 2010)

Video Recording [wmv]  •  Slides [ppt]

This webinar covered 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.

Presenters: Diane Storman, Patti Palomar, Nancy Lavine and Melissa Haider.

Health Care Connections: A Resource for Understanding and Navigating Health Care for Children and Youth with Special Health Care Needs (September 2010)

Video Recording [wmv] •  Slides [pdf]

Handouts:  Health Care Connections Manual (English, Spanish & Chinese)  •  “Know Your Health Care Plan” Handout  •  Addendum/Updates (March 2010)  •  Update to Manual: P51-55  •  Update to Manual: P56-62  •  Denti-cal Information

A training tool to understand core values for providing health care to CSHCN, various health care services for CSHCN, understanding a health care plan, working with providers and advocating in health care systems, and resources and information regarding health care for CSHCN.

Presenters: Juno Duenas and Mara McGrath

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. 

CCS Redesign Changes, Transition Resources, & Assemb. Thurmond On ICC

This newsletter was sent May 17, 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

Assemb. Tony Thurmond Appointed To State Interagency Coordinating Council On Early Intervention

Governor Brown announced the appointment of Assemblymember Tony Thurmond to the State Interagency Coordinating Council (ICC) On Early Intervention in a May 11 press release. Comprised of parents of children with disabilities, early intervention service providers, health care professionals, and state agency representatives, the ICC encourages a family-centered approach, interagency collaboration, and provides advice and assistance to the Department Of Developmental Services. Assemblymember Thurmond has proven to be a strong champion for children and youth with special health care needs (CYSHCN) and fills a legislative position on the ICC that has been empty for nearly a decade. To read more about the ICC, click here.

thurmond

Amendments Made To SB 586, California Children’s Services Redesign Bill

Senate Bill 586 addresses the future of California Children’s Services (CCS) and the proposed plan to transition some children currently covered by CCS into managed care. Amendments to the bill were much in line with statewide advocates’ recommended principles and deal with processes and protections that ensure CYSHCN are given the best systems of care possible. All further amendments to the bill will be addressed in the policy bill process. To read the revised version of the bill, click here.

Governor Brown Passes State Budget, Revisions Include Modest Spending Increases

On May 13, Governor Brown released California’s 2016-2017 revised budget plan. Although it contains minimal spending increases, the budget does implement several proposals aimed at improving economic stability, including funding for Medi-Cal and services for people with developmental disabilities. A large revision allows for resources to cover the thousands of undocumented children who are now eligible for Medi-Cal. To read highlights from the revised budget, click here.

How The Final Managed Care Rule Applies To Children And Youth With Special Health Care Needs

The Centers For Medicare And Medicaid Services (CMS) recently published its final rule which updates managed care guidelines. According to preliminary analysis from the National Academy For State Health Policy (NASHP), the rule gives states significant flexibility in making changes designed to modernize Medicaid and Children’s Health Insurance Programs while improving quality of care. As for how the rule applies to CYSHCN, states retain the ability to enroll some or all of their CYSHCN in managed care, and states that mandatorily enroll these children will need to ensure their families have the option to change health plans. To read a blog post from NASHP on how the final rule further applies to CYSHCN, click here, and to check out a list of upcoming CMS webinars on the final rule, click here.

Senator Lara Stops In San Francisco On Statewide Tour To Promote Enrollment In New Medi-Cal Expansion For Undocumented Children

Joined by various elected leaders and community partners, Senator Ricardo Lara gave a press conference on May 12 at the Mission Neighborhood Health Center in San Francisco. As part of his seven-stop outreach and enrollment “#Health4AllKids” tour, Senator Lara and advocates provided insight to attendees and families on the new expansion, which officially went into effect yesterday. An estimated 170,000 are now eligible for health care. To read more about the enrollment tour and new law, click here.

Lara

GIVE INPUT

Are You Prepared For An Emergency? Create A Short Video To Help Inspire Other Families Of CYSHCN To Think About Disaster Planning And Win $100

Preparing for an emergency is especially critical for families of CYSHCN. In order to spread disaster preparedness awareness, Family Voices National is running a video contest in hopes of spotlighting real stories that show how emergencies can impact families of CYSHCN. Accepted videos will win $100. Submissions can be simple cell phone stories ranging from 1.5-3 minutes in length, and videos must be submitted by May 31. For more information, click here.

Support AB 2004: Hearing Aids For Minors

On May 4, the California Assembly Health Committee voted in favor of AB 2004, sending the bill to the Assembly Appropriations Committee. AB 2004 requires that health care service plan contracts or health insurance polices renewed on or after January 1, 2017 cover hearing aids for enrolled minors. As the bill is being reviewed by the Appropriations Committee, it’s important that they hear from families about why they support AB 2004 and how it would impact them. To show that you’re behind the bill, consider writing a letter of support. You can find a sample letterhere. Email your letter to Lisa Murawski, the appropriations consultant for the bill, and Nardos Girma, assistant to author Assemblymember Richard Bloom. To read more about AB 2004, click here.

RESOURCES

Publication: Designing Systems That Work For Children With Complex Health Care Needs

The Lucile Packard Foundation For Children’s Health led a December symposium titled “Designing Systems That Work For Children With Complex Health Care Needs” aimed at discussing issues such as care coordination, national health policy, self-management support, and financing. To read the proceedings from the symposium that elaborate on potential solutions and ongoing issues in systems of care, click here.

Accessible Technology Resource Page Added To ADA.gov Website

Addressing enforcement, technical assistance, regulations, and technology initiatives, this new section of ADA.gov is a hub for all things assistive technology (AT). Among other things, you can access sample letters to help covered entities understand their ADA obligations with regard to AT, access a catalogue for accessibility best practices, and browse federal initiatives. To view the page, click here.

at

New Condition-Specific Transition Toolkits Available From The American Association Of Pediatrics And Got Transition

In order to address the gap that occurs between pediatric and adult health care, the American Association Of Pediatrics released six new condition-specific toolkits modeled after Got Transition’s Six Core Elements Of Health Care Transition. Toolkit topics include: general internal medicine for adults with developmental and physical disabilities, cardiology, endocrinology, hematology, nephrology and rheumatology (gastroenterology coming soon). To access the toolkits, click here.

Join The Lucile Packard Foundation For Children’s Health Newsletter!

Published twice a month, this newsletter provides excellent resources for families of CYSHCN. To sign up and also view past issues of the network newsletter, click here.

WEBINARS

May 18: The Relationship Between Fetal Alcohol Spectrum Disorders And Attention-Deficit Hyperactive Disorder

Sponsor: National Organization On Fetal Alcohol Syndrome

More information and registration here.

May 19: Reducing Stress In Children With Learning And Attention Differences

Sponsor: Learning Ally

More information and registration here (you must first create a free account).

May 23: Medical Home: Patient Centered Communication

Sponsors: The Johns Hopkins School Of Medicine and the New-York Mid Atlantic Consortium For Genetic And Newborn Screening Services

More information and registration here.

May 24: The Disability Integration Act And Why It Matters To You

Sponsor: United Spinal Association

More information and registration here.

May 25: Coordinating Care For Kids: School Nurses Linking With The Medical Home

Sponsor: National Center For Medical Home Implementation

More information and registration here.

May 26: Coding For Chronic And Transition Care Management And Pediatrics

Sponsors: The Lucile Packard Foundation For Children’s Health and the American Academy Of Pediatrics

More information and registration here.

May 26: Becoming ABLE Ready: Choosing The Right Program For You

Sponsor: National Disability Institute

More information and registration here.

May 31: Changing Relationships: How To Foster Effective Communication With Patients And Families

Sponsor: National Center For Medical Home Implementation

More information and registration here.

June 14: Emerging Treatments In Sickle Cell Disease

Sponsor: California Sickle Cell Resources

More information and registration here.

UPCOMING CONFERENCES

June 25-28: Spina Bifida Association—41st Annual National Conference, Bloomington, MN

For more details, click here.

November 10-13: The National Federation For Children’s Mental Health—27th Annual Conference, Phoenix, AX

Further details, including a call for presentation proposals, will be available in the next two weeks. Visit FFCMH’s website to find out more.

ARTICLES

When Pregnant Women Get Flu Shots, Babies Are Healthier

CORRECTION

In our last newsletter, we incorrectly stated that Daniel Weintraub was the editor of California Healthline. He is the editor of the California Health Report.

Select Committee on CYSHCN Update & Care Coordination

This newsletter was sent April 8, 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

CDC: No Change In Autism Prevalence, Children Not Receiving Early Evaluations

While the estimated percentage of children with autism still remains high, the CDC reports there has been no change in the prevalence of reported diagnoses. They also note that children with autism are not receiving comprehensive developmental evaluations as early as they could be. To read a summary of the CDC’s key findings, click here.

Second Meeting Of Senate Select Committee On Children And Youth With Special Health Care Needs

The Select Committee, chaired by Senator Dr. Richard Pan, met for a second time on April 5 to discuss the barriers and challenges of interagency care coordination. Often, a child’s care map extends far and wide to include an immediate and external network. The committee’s goal is to break down silos of care so that children with special health care needs can have easier access to their support systems. To listen to or watch a recording of the meeting, click here.

CCS Redesign: State Rebuffed, Won’t Move Fragile Kids To Managed Care—For Now

After hearing testimony from families and providers, the Assembly budget subcommittee voted to hold off on phase one of the Department of Health Care Service’s proposal to transition nearly 20% of children with disabilities to managed care. The bill was voted on on March 14 and unanimously rejected. It has now been added to the Governor’s proposed budget. Read more in the California Healthline article here.

Family Voices of California: 14th Annual Health Summit & Legislative Day

fist bump

We’d like to extend our heartfelt gratitude to all families, advocates, professionals, speakers, and sponsors that made this year’s Health Summit extremely successful! The conference took place on March 14 and over 138 people attended. Highlights included a keynote by Senator Dr. Richard Pan on the formation of the Senate Select Committee On Children And Youth With Special Health Care Needs, panel discussions on Medi-Cal Managed Care, the future of California Children’s Services programs, and mental health. The following day, 57 family members made over 25 legislative appointments at the Capitol. To see photos from the conference, click here, and to check out a list of our generous sponsors click here. A highlights report will be made available soon.

Family Voices Brings Project Leadership Training To AMCHP Conference April 6-9

Family Voices of California Project Leadership State Liaison Allison Gray traveled to Washington, D.C. to attend the Association of Maternal and Child Health Programs annual conference where she gave a poster presentation on Project Leadership, a parent advocacy training program developed by Family Voices of California council members. The title of her presentation was “Effecting Health Care Policy Change, One Parent at a Time.” Project Leadership is designed to help family members develop the skills and tools they need to partner at all levels of decision making and engage in public policy advocacy activities in California on behalf of children and youth with special health care needs.

Family Voices National: 2016 Leadership Conference

Over 150 family representatives from all 50 states attended the Family Voices National conference on March 30-31. This year’s theme was “Expanding Our Reach, Impacting The Future” and workshops ranged in topic from system changes at the local, state, and national level as well as recruiting adult and youth leaders and developing “value add” partnerships. For a look at the full conference brochure, click here.

WEBINARS

April 13: Take Action On Care Coordination

This webinar will feature a parent’s perspective, along with real-life examples from a provider and a payer, on how to develop effective local care coordination systems. It’s designed as a first step in building a national movement to promote care coordination policies and payment options that better serve children, families, and care providers. The discussion will center around the report, The Care Coordination Conundrum And Children And Youth With Special Health Care Needs, a summary of which can be ready here. To register, click here.

April 20: Approaches To Community Access, Participation, And Engagement For Children With Developmental Disabilities And Their Families

Led by Roger Ideishi, this webinar will address all things accessibility. For children with developmental disabilities, accessibility demands more than exposure and presence in the community. It should take into consideration opportunities that foster meaningful connections with the experience and create links to the physical, social, and cultural aspects of the environment. To register, click here.

April 21: Parents Taking Action: Empowering Latina Mothers of Children with Autism Spectrum Disorder

Despite the fact that Latino children are one of the fastest growing autism spectrum disorder populations, they are one of the most underserved groups with respect to diagnostic services, health care, and specialty autism services. This webinar will discuss the development of a culturally-based approach to addressing information needs of Latino parents. To register, click here.

April 28: The Rules Of Sex For People With Developmental Disabilities

A clinical psychologist specializing in sexuality and people with developmental disabilities, Nora Baladerian will discuss the do’s and dont’s of sex, different kinds of sexuality, possible outcomes of having sex, and when, where, and whom it’s okay to have sex with. To register, click here. 

RESOURCES

The Road To Recovery: Supporting Children With Developmental Disabilities Who’ve Experienced Trauma

road

This toolkit for providers offers information on supporting a child’s well-being, happiness, and recovery through a trauma-informed practice. To download, click here (you must create a profile).

What Families Need To Know About Changes In Special Enrollment Periods

This tip sheet provides information on two major policy changes related to special enrollment periods in the marketplace. You’ll be able to quickly review a list of qualifiers that have been eliminated and added. To download, click here.

Getting And Keeping Health Care Coverage For Low-Income Californians: A Guide For Advocates

Organized by the Western Center For Law And Poverty, this guide provides advocates with the relevant statutes, regulations, and guidance needed to help their clients access health care coverage. To download, click here.

ARTICLES

CCS Medical Directors Tackle Thorny Issues” 

“Bill Seeks Benefits For Caregivers”

More Sickle Cell Patients Survive, But Care Is Hard To Find For Adults

“Tiny Opioid Patients Need Help Easing Into Life

New Model For Meeting The Needs Of The Most Fragile Children

Program Helps Families Address Developmental Concerns”  

Hillary Clinton Takes A Stand Against ‘Subminimum Wage’ For People With Disabilities

President’s Task Force Aims To Help End Discrimination In Mental Health Coverage

What Happens When The Online Bully Is A Child With Special Needs

A Day With A Sixth-Grader: How One School Supports a High-Needs Student” 

Student Suspensions In California Charter Schools Follow Familiar, Troubling Patterns

Websites

Disability Specific Info

AUTISM

American Autism Association

Asperger/Autism Network

Asperger Syndrome & High Functioning Autism Association

Association for Science in Autism Treatment

Autism Care

Autism Classroom

Autism Internet Modules

Autism Now Center At The Arc

Autism Parenting Magazine

Autism Research Institute

Autism Science Foundation

Autism Society

Autism Speaks

Autism Today

Autism Women’s Network

Estate Planning For Parents Of Children With Autism

Families For Early Autism Treatment

Indiana Resource Center For Autism

Interagency Autism Coordinating Committee

Marcus Autism Center

My Autism Team

National Autism Association

National Autism Center

Operation Autism For Military Families

Organization For Autism Research

Sesame Street And Autism

Thinking Autism Guide

ADHD/ADD

A Mom’s View Of ADHD

ADD Association

ADDitude Magazine

ADD Resources

ADHD Coaches Organization

ADHD Together

ImpactADHD

Moms Of Kids With ADHD

National Resource Center On ADHD

Star Institute For Sensory Processing Disorder

Take Control ADHD

BLINDNESS & VISION IMPAIRMENT

American Council Of The Blind

American Foundation For The Blind

American Printing House For The Blind

Association For Macular Diseases

Bookshare

FamilyConnect

Foundation Fighting Blindness

International Agency For The Prevention Of Blindness

Junior Blind

Learning Ally

Lighthouse Guild

LOUIS Database

National Braille Association

National Braille Press

National Center On Accessible Education Materials

National Eye Institute

National Federation Of The Blind

National Library Service For The Blind And Physically Handicapped

Prevent Blindness America

Resource For Living

Smart Kids With Learning Disabilities

WonderBaby

CEREBRAL PALSY

American Academy Of Cerebral Palsy And Developmental Medicine

Cerebral Palsy Group

Cerebral Palsy Guidance

Cerebral Palsy Guide

Cerebral Palsy Information

Cerebral Palsy International Research Foundation

CP Daily Living

Love That Max

Reaching For The Stars

United Cerebral Palsy

World CP Day

CONGENITAL HEART DEFECTS

Children’s Cardiomyopathy Foundation

Children’s Heart Association

The Children’s Heart Foundation

Congenital Heart Information Network

Congenital Heart Public Health Consortium

Congenital Heart Walk

Cove Point Foundation

Kids With Heart

Little Hearts

Mended Little Hearts

Pediatric Congenital Heart Association

SecondsCount

DEAFNESS & HARD OF HEARING

American Society For Deaf Children

Beginnings

Better Hearing Institute

Central Institute For The Deaf

Hands And Voices

Hearing Loss Association Of America

House Ear Institute

Laurent Clerc National Deaf Education Center

My Baby’s Hearing

National Center For Hearing Assessment And Management

National Institute On Deafness And Other Communicative Disorders

Raising And Education Deaf Children

DOWN SYNDROME

Club 21

Down Syndrome International

Down Syndrome Information Alliance

Down Syndrome Research Foundation

Enjoying The Small Things

Global Down Syndrome Foundation

International Down Syndrome Coalition

National Down Syndrome Congress

National Down Syndrome Society

Stanford Down Syndrome Research Center

EPILEPSY

American Epilepsy Society

Citizens United For Research In Epilepsy

The Charlie Foundation For Ketogenic Therapies

Child Neurology Foundation

Coping With Epilepsy

Dravet Syndrome Foundation

Epilepsy Foundation

International Bureau For Epilepsy

LSG Foundation

National Institute Of Neurological Disorders And Stroke

TalkAboutIt.Org

SPINA BIFIDA & HYDROCEPHALUS

Hydrocephalus Association

International Federation For Spina Bifida And Hydrocephalus

National Hydrocephalus Association

Spina Bifida Association

Spina Bifida Association Of California

RARE DISABILITIES & OTHER CONDITIONS

National Organization For Rare Disorders’s Rare Disease Database

General Resources

Special Education & Learning

Mental And Behavioral Health

Parent-To-Parent Info & Support

Spanish Language Resources

Transition

Assistive Technology

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