This newsletter was sent June 14, 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

Health Summit Highlights Report And Panel PowerPoints Now Available

Family Voices Of California’s 14th Annual Health Summit And Legislative Day took place on March 14-15 and brought together families of children and youth with special health care needs, professionals from government agencies, and health care providers/advocates. For a summary of activities, panel presentations, a legislative day recap, and participant feedback, click here to browse our Highlights Report. In addition, PowerPoints from our three panels on California Children’s Services, Medi-Cal Managed Care, and mental health can be found in full here.

San Leandro’s Family Resource Navigators Completes 2016 Project Leadership Training

Family Resource Navigators (FRN) completed their recent round of Project Leadership training with a total of nine graduates (seven Spanish-speaking, one Chinese-speaking, and one English-speaking). The Project Leadership curriculum was developed by Family Voices Of California and introduces parents and caregivers to the nuts and bolts of advocacy in a series of seven trainings. Parents learn how to partner and engage in all levels of public advocacy on behalf of children with special needs. FRN’s training was sponsored by Alameda County First Five and all graduates will go on to join the Help Me Grow Family Advisory Committee. The curriculum is available for download on our website and is easily adaptable to your specific advocacy needs: FRN chose to include more information on early childhood developmental screening, Help Me Grow, and local advocacy. To access the curriculum, please click here.

Parent-Penned Op-Ed About Autism And Aging Out Of The School System Published On California Health Report

This April, Family Voices Of Californias’ Project Leadership graduates attended an op-ed writing workshop led by California Health Report’s Daniel Weintraub. The first piece out of this seminar is by Pam Raymond and deals with the issues children with autism‬ (and their parents) face as they age out of the school system. To read the op-ed, click here.

Hearing June 21 To Discuss California Children’s Services Redesign Bill (SB 586)

Senate Bill 586 addresses the future of the California Children’s Services (CCS) program and the state’s proposed plan to move some of the children covered under CCS to managed care plans. Recently, a collective group of advocates proposed revised language to the bill which can be read here. The Assembly Committee On Health will address SB 586 on June 21 in Sacramento. For more information on how you can listen to the hearing, click here.

RESOURCES

Summer Fun For Children And Youth With Special Needs: Accessible Travel, Camps, Family Movie Night, And Summer Reading

If you’re planning on taking a summer trip this year, the AXS mobile phone app can help you find, rate, and share wheelchair accessible locations all over the country. The app was developed by a filmmaker after he was diagnosed with multiple sclerosis and has since helped galvanize groups for ‘Mapathons,’ divide-and-conquer type marathons where people map select neighborhoods in one day. If your child enjoys summer camp, here’s a list of special needs camps in Southern California and the Bay Area as well as a catch-all list with a breakdown of amenities and activities and an autism-specific list from Autism Speaks. Lastly, if your family is looking to have a night in, check out this list of award-winning films about kids with special needs as well as this list of disability-themed children’s books.

Updated Edition Of First Steps: A Parent’s Guide To Prader-Willi Syndrome

First Steps is a resource for parents, by parents, that has helped hundreds of families figure out what to do immediately after a Prader-Willi Syndrome diagnosis. The new edition includes 16 pages of updated insights and strategies for coping and thriving, information about symptoms and treatments, and links to resources. To access First Steps, click here.

New Series Of Ear, Nose, And Throat Videos From HealthyChildren.org

Developed by the American Academy Of Pediatrics and the American Society Of Pediatric Otolaryngology, the five new videos are titled, ‘Could My Child Have A Breathing Problem?’, ‘Does Your Child Snore?’, ‘Noisy Breathing In Children,’ ‘Treating Ear Infections In Children,’ and ‘What To Do If You Discover A Lump On Your Child’s Neck.’ To access the videos, click here. Related: an article on hearing loss in children with Down Syndrome.

Cystic Fibrosis Foundation Releases Annual Report

The Cystic Fibrosis Foundation released their annual report which summarizes key research highlights including the Federal Drug Administration’s approval of Orkambi, the first combination drug to treat the root cause of cystic fibrosis, and Relizorb, a cartridge containing digestive enzymes that helps break down beneficial fats in supplemental nutrition. Other sections address patient care (with a large focus on areas that need improvement), access and policy, community partnerships, fundraising, and communications. To read the report, click here. 

The Children’s Partnership: The Affordable Care Act And Children’s Coverage In California: Our Progress And Future

This report from the Children’s Partnership looks at health reform advancements made in California and details what’s necessary to continue to support a healthy future for all children. One suggested improvement for children with disabilities concerns the Children’s Health Disability Prevention (CHDP) program, a developmental screening program for low-income children that has a gateway to Medi-Cal enrollment. Since the CHDP application information can serve as an initial screening for Medi-Cal eligibility and provides temporary coverage, the report suggests that the CDHP gateway could offer express eligibility and provide ongoing coverage. To read the report, click here. Related: an article on what parents of children with disabilities need to know about changes to the Affordable Care Act.

WEBINARS

Webinar Recording: Family Participation In Discharge Planning: Voices Of Patients, Parents, And Advocates

To view the recording, click here.

June 15: ADHD: The Taming Of The Shame

Sponsor: Attention Deficit Disorder Association

More information and registration here.

June 15: Targeting Social Influences That Shape Health Literacy In Communities

Sponsor: Healthy People 2020

More information and registration here.

June 16: Improving The Safety Of Clinical Alarm Systems

Sponsor: UCSF Benioff Children’s Hospital

More information and registration here.

June 17: I’m A Parent Of A Young Child With ADHD: Why Do I Need Training In Behavior Therapy?

Sponsor: National Council For Behavioral Health

More information and registration here.

June 21: Future Planning For People With Dual Diagnoses Of Disabilities And Mental Health Needs: Strategies And Challenges

Sponsor: The Arc

More information and registration here.

June 22: Investigating Autism’s Skewed Sex Ratio

Sponsor: Spectrum

More information and registration here.

June 22: Eliminating The Use Of Seclusion And Restraint In Youth With Disabilities And Co-Occurring Behavioral Health Disorders

Sponsor: The National Association For The Dually Diagnosed

More information and registration here.

June 28: The Attorney Client Relationship: Bridging The Gap Between Attorneys, Clients With Disabilities, And Their Families

Sponsor: The Arc’s National Center On Criminal Justice And Disability

More information and registration here.

June 29: Recruiting, Training, And Retaining Members For Engagement On Consumer Advisory Committees

Sponsor: Resources For Integrated Care

More information and registration here.

June 30: Siblings As The Next Generation Of Advocates For People With Disabilities

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

More information and registration here.

ARTICLES

“San Diego Mother Mourns While Mental Health Gaps Persist”

“Amid Intense Isolation, Stirrings Of Hope for Families With Rarest Genetic Mutations”

“Pediatric Research: Too Much Noise A Problem For Premature Babies”

”A Good Night Sleep May Shorten Kids’ Hospital Stays”

“Freed By Court Ruling, Texas Medicaid Again Orders Pay Cuts For Disabled Kids’ Therapists”

“Drama Classes May Boost Social Skills In Kids With Autism”

“New Sleep Duration Guidelines For Children Released, Backed By AAP“

“Blacks Die From Asthma At Steep Rates, But Are Absent From Many Studies”

“A Riding Program For Disabled Children Finds Stables It Can Call Home”

“Autism Documentary Heads to Theaters”

“North Carolina Becomes First State To Create Rare Disease Advisory Council”

“Kids With Disabilities 2x More Likely To Be Suspended From School”

“George Washington University Teaches Policy Alongside Medicine To Prepare Medical Students For Real World”

“New Bill Would Give ER Doctors Authority To Choose Between 72-Hour Hold For Mental Health Patients, More Therapeutic Outside Treatment”

This newsletter was sent May 31, 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

Registration Open For Virtual Participation At National Hydrocephalus Conference (June 16-19)

Sponsored by the Hydrocephalus Association, this year’s conference theme is “Together Towards Tomorrow.” The conference aims to provide resources and tools for navigating the medical, educational, and social challenges of living with hydrocephalus. Although the event is taking place in Minnesota, you may register as a virtual participant for access to track sessions and recordings. For more information and registration, click here. Also, to check out a new “Ask The Expert” video on shunt revisions from the Hydrocephalus Association, click here.

Family Voices Of California To Take Part In Upcoming Webinar: “Family Participation In Discharge Planning: Voices Of Patients, Parents, And Advocates” (June 9)

Family Voices of California (FVCA) will be joining the Lucile Packard Foundation For Children’s Health and Boston Children’s Hospital’s Teen Advisory Committee for a webinar that will focus on understanding and improving the family hospital discharge experience. The conversation will center around current efforts to engage families in the discharge process, common sense practices that facilitate dialogue between families and clinicians, and pragmatic steps that hospitals can take to improve the discharge experience. FVCA Project Leadership State Liaison Allison Gray and Project Leadership graduate Elana Ford will provide parent perspectives. To register for the webinar, click here.

Children With Disabilities, Medical Complexities Living In Nursing Homes Entitled To Education Services Under Individuals With Disabilities Act

The U.S. Department Of Education recently sent a letter noting that states must identify their school-aged children with disabilities who are living in nursing homes (nearly 5,000 nationwide) and provide them with the education services they’re legally entitled to. For an article on the topic, click here. In a related piece, a New York senator is calling on the federal government to fully fund the Individuals With Disabilities Act. Read more here.

The American Academy Of Pediatrics Recommends At Least One Nurse Per School

The American Academy Of Pediatrics (AAP) has amended a 2008 policy statement which called for the ratio of school nurses for the healthy student population to be 1:750 and 1:225 for students who need daily assistance. Given that the job of the school nurse has evolved to include chronic disease management, emergency preparedness, behavioral assessments, and monitoring more children with special needs, the AAP now recommends that each school have at least one full-time registered nurse on duty. To read the AAP press release, click here. To read a related California Healthline piece on California’s shortage of school nurses, click here.

GIVE INPUT

Study: Shunt-Related Headaches In People With Hydrocephalus

The Albert Einstein College Of Medicine is studying the effects of hydrocephalus on the stiffness of the brain and its association with important clinical measures such as shunting history and headache severity. Participants must be 6-25 years old. Even if you cannot travel to New York for the in-person component of the study, you may still be eligible to take a 20-minute online survey and be paid $10. For more information, click here.

Male Subjects Needed For Study On Eye Contact And Social Skills 

Stanford University’s Center For Interdisciplinary Brain Sciences Research is conducting a study to evaluate eye contact and social skills in males with disabilities ages 8-15. Eligible participants will travel to Stanford for 4-5 days (all expenses paid) and receive a $100 honorarium as well as a copy of their cognitive test results. For more details and to take a preliminary survey to determine eligibility, click here.

RESOURCES

100 Day Toolkit For Newly Diagnosed Families Of Young Children With Autism

This new toolkit from Autism Speaks was created specifically for families of children ages 4 and under to make the best possible use of the first 100 days following their child’s autism diagnoses. Subjects covered include getting your child services and how to create a week-by-week care plan. You can download a PDF version or request a free hard copy to be picked up at your nearest FedEx location. For more information, click here.

California Disability Voter Guide From Respectability

With over 5.9 million people with disabilities eligible to vote in California, this guide provides a great outline on where candidates stand on key disability issues. Bernie Sanders and Hillary Clinton have provided complete answers to the set of 16 questions; Donald Trump has yet to respond. Other Republican candidates who have since dropped out of the race have provided full or partial responses. To access the guide, click here.

Practical Oral Care For Individuals With Developmental Disabilities

The National Institute Of Dental And Craniofacial Research offers a wealth of knowledge for both health professionals and caregivers on addressing oral health in people with disabilities. In their “Practical Oral Care” series, they discuss health challenges and strategies for individuals with autism, cerebral palsy, down syndrome, and intellectual disabilities. Many of the sections have helpful detailed illustrations and discuss preventative measures to common oral health issues specific to each disability. To access the series, click here.

Updated Drowning Prevention Site From The Department Of Developmental Services

With summer around the corner, it’s important to prioritize and teach the rules of water safety as drowning is the leading cause of injury-related death in California among children under 5. The Department Of Developmental Services has updated its Drowning Prevention resource page with a letter from Governor Brown, an interactive pool safety song, and information from the American Academy Of Pediatrics on water safety. To access the website, click here.

Handbook: Making My Way Through College: A Guide For Students With Disabilities

The National Collaborative On Workforce And Disability For Youth has created a handbook geared towards any student with a disability who is pursuing a degree or credential at a two or four-year university. Topics include getting to know your school, connecting with other students who have disabilities, and creating your individualized plan. To access the handbook, click here.

National Disability Navigator Resource Collaborative Video Series: Health Insurance Jeopardy Round Two

When it comes to choosing a plan in the marketplace, consumers need to make sure they are asking the right questions about what’s being offered in order to make an informed choice. In a follow up to round one of their video series, the National Disability Navigator Resource Collaborative has released round two, which focuses on the health needs of individuals with mental illness and intellectual disabilities (plus more) and the issues faced when enrolling them in the marketplace. To access the video series, click here.

Asthma And Allergy Foundation Of America: Ask The Allergist & Community Forums

If you have a question about your child’s asthma or allergies, you can email an allergist via the “Ask The Allergist” section of the Asthma And Allergy Foundation Of America’s (AAFA) website. To access the page, click here. The AAFA also has a new online community for asthma and allergic diseases which can be accessed here (a similar community on kids with food allergies can be found here).

WEBINARS

May 31: Speech, Language, And Reading: A Starter Guide For Parents

Sponsor: Morneau Shepell Children’s Support Solutions

More information and registration here.

June 2: Supporting Students With Dyslexia: Standards, Accommodations, And Strategies

Sponsor: Center On Technology And Disability

More information and registration here.

June 2: State Approaches To Providing Health-Related Supported Services Through Medicaid

Sponsor: Center For Health Care Strategies

More information and registration here.

June 3: Understanding The Undiagnosed Diseases Network: An Overview

Sponsors: National Organization For Rare Disorders and the Undiagnosed Diseases Network

More information and registration here.

June 8: Changing Practice: How To Understand And Address Social Factors That Shape Child Health

Sponsor: National Center For Medical Home Implementation

More information and registration here.

June 9: Family Participation In Discharge Planning: Voices Of Patients, Parents, And Advocates

Sponsors: Lucile Packard Foundation For Children’s Health and Boston Children’s Hospital

More information and registration here.

June 20: Addressing Health Coverage Inequities Among Children With Special Health Care Needs In Your State

Sponsor: The Catalyst Center

More information and registration here.

Upcoming Weekly Webinar Series: “Pink Book Wednesdays:” The Epidemiology And Prevention of Vaccine-Preventable Diseases (June 1 – September 21)

Sponsor: The Centers For Disease Control And Prevention

More information and registration here.

ARTICLES

“You Mean I Don’t Have To Show Up? The Promise Of Telemedicine”

“Humans Of New York: A Collection Of Photos And Stories On Childhood Cancer”

“Assistive Technology Helps Kids Soar At Jersey City School”

“Disability Providers Get Reprieve From New Wage Rule”

“Ontario Youth With Disabilities Demand A Say In Decisions Affecting Their Lives”

“Supporting Children Who Serve As Caregivers”

“The Other Bathroom War: People With Disabilities”

“Massachusetts General Hospital To Build Virtual Down Syndrome Clinic”

“One Parent’s Twitter Campaign To Get Her Daughter A Wheelchair”

“Can Experimental Marijuana Treatments Save A Young Boy With Epilepsy?”

“Lawmakers Approve Audit Of Disabled Parking In California”

“Some Oakland Parents Worried About Moves Planned For Schools’ Special Ed Classes”

“Orange County: Severe Shortage Of Foster Homes For Children With Special Needs”

“Valley Hospitals Spending Millions To Build Pediatric Networks”

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.

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.

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.

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

This newsletter was sent May 3, 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

Family Voices Of California Parent Advocates Learn The Art Of Op-Ed Writing

On April 23, California Health Report editor Daniel Weintraub led a special seminar for Project Leadership graduates called “The Art of Opinion Writing: An Advocacy Tool.” Participants learned how to envision and write an opinion article and received tips on increasing their chances for publication. In total, 14 parents attended this productive working seminar where they outlined and drafted their opinion pieces and received individualized feedback from Daniel. As the parent voice is a strong one, Daniel will continue to guide parents in fine-tuning these articles and help them spread their opinions spread far and wide as influential advocacy pieces.

National Children’s Mental Health Awarness Week: May 1-7

Sponsored by the National Federation Of Families For Children’s Mental Health, this year’s awareness week theme is “Healthy Families, Resilient Children: Mental Health Is A Family Affair!” The campaign encourages us to increase education surrounding early prevention and identification and stresses that healthier family units are better equipped to support a resilient child. Eric Walton was 13-years-old when he was diagnosed with bipolar disorder and, looking back on his journey, offers these words of wisdom: “Mental illness should be treated with respect and kindness, not fear and stigma. People with mental illness are all human beings. And they deserve the same respect as anyone else.” To read about how talking openly against stigma with his mother helped Eric cope with his diagnoses, click here.

New SIDS Study Launches This Month: Could Inner-Ear Problems Be The Issue?

Doctor Daniel Rubens, an anesthesiologist at Seattle Children’s Hospital, partnered with the Lullaby Trust to conduct a two-year SIDS study that will begin this month. The study will investigate how possible inner-ear defects dull a baby’s automatic need to reposition itself when sleeping. They believe this can cause breathing issues, decreased oxygen, and eventual suffocation. To read more about the OASIS study, click here.

GIVE INPUT

Survey: Barriers To Employment For People With Disabilities

Researchers at the Rehabilitation, Research, And Training Center On Employment Of People With Physical Disabilities want to better understand what barriers people with disabilities face in regards to employment, work support, and means of obtaining information about employment services and strategies. In order to participate in the survey, you must be between 18-65 and have a physical disability. To take the survey, click here.

WEBINARS

May 11: School Budgets And Equity: What Do Parents And Community Groups Need To Know?

Sponsor: Children Now

This webinar will unpack the Local Control Funding Formula (LCFF), or new school finance law. The LCFF creates the promise for greater school equity by giving parents and the community a say on how to best serve vulnerable students in the budget. The LCFF will be simplified and parents will learn how to effectively partner in this important decision-making process. To register, click here.

May 12: Changing Perception: How To Build Cultural Competence And Humility

Sponsor: National Center For Medical Home Implementation

This webinar will define cultural competency and discuss the importance of recognizing diversity among patients, families, and clinicians. Participants will learn how to acknowledge and minimize unconscious biases in order to build cultural competence and quality of care among professionals and family advocates. To register, click here.

May 25: Integrating Health Into The Transition Individualized Education Plan

Sponsor: Statewide Parent Advocacy Network Of New Jersey

In this webinar, participants will learn why health is important to post-secondary eduaction, employment, and independent living as well as how to address these topics in the IEP. To register, click here.

ASK Webinar Archive

For a great list of archived webinars on a variety of subjects having to do with children and youth with special health care needs, click here (some are offered in Spanish). Sample topics include requesting a special education evaluation, building toward success in adult life, water safety and children with special needs, and traveling with a disability.

RESOURCES

Report: Expanding Access To Care For Maternal And Child Health Populations In California

As part of the Alliance For Innovation On Maternal And Child Health program, the American Academy Of Pediatrics surveyed patients, families, and providers to better understand impediments to care and coverage. The report notes a common thread of frustration from families of children with special health care needs as they’re told the sooner they receive care, the better their children’s outcome will be. However, they’re often unable to access this care due to lack of providers or out-of-pocket cost. To read the full report, click here.

Your Legal Toolbox: Special Education Law For Children With Behavioral Issue: When Emotions Run High

Part three of The Coffee Klatch’s “Your Legal Toolbox” series is now available. In this podcast, parent and attorney Bonnie Shinagle will discuss all things emotion. Leading off with the question, “what’s the most overwhelming part of being a parent of a child within the special education system,” Bonnie will discuss how to keep your cool when dealing with adversarial members at committee meetings and transition into other topics having to do with public advocacy. To listen to the podcast, click here.

Personalized Learning: Meeting The Needs Of Students With Disabilities

After surveying 1,800 parents of children with learning disabilities, the National Center For Learning Disabilities discovered that the majority of parents weren’t familiar with personalized learning. Bringing together top experts, the NCLD created a comprehensive set of policy and practice recommendations that address best practice for families, educators, district leaders, policymakers, and everyone who has a role in ensuring that students with disabilities succeed in school. To read the recommendations, key considerations, and roadmaps for parents and educators, click here.

Study: Dynamic Motor Control Is Associated With Treatment Outcomes For Children With Cerebral Palsy

In this study, researchers found that data from an electromyography, a common procedure used to monitor muscle activity, could determine whether surgery to lengthen tendons, rotate bones, or transfer muscles to new locations would be the best route for children with cerebral palsy. They found that better dynamic motor control was associated with better outcomes, regardless of treatment. To read the study, click here.

Report: The Care Coordination Conundrum And Children And Youth With Special Health Care Needs

In a new report funded by the Lucile Packard Foundation For Children’s Health, the authors discuss why care coordination has been insufficiently financed and reimbursed, and what can be done to address the many challenges of providing and paying for care coordination for children and youth with special health care needs. To read the report, click here.

Find A Home Health Agency In Your Community

In this new section of the Medicare.gov website, you can search for and compare home health agencies using patient survey star ratings. The data is updated quarterly. To access the website, click here.

ARTICLES

“FDA Moves To Ban The Use Of Shock Devices On Those With Special Needs”

“Perinatal Hospice Care Prepares Parents For The End, At Life’s Beginning”

“St. Louis Doctors Among 20 In U.S. Treating Hydrocephalus Without A Shunt”

“Cities Begin To Count The Scars Of Childhood And Try To Prevent The Damage”

“University Of Pittsburgh Students Demand More Visible On-Campus Representation”

“Foster Use Drug Prescription Under Scrutiny In Sonoma County”

“At UCSF Benioff Children’s Hospital Prom, Teen Feels Happy With People ‘Like Me.”

“A Birth That Launched The Search For A Down Syndrome Test”

“New RX For Kids: Get Outside And Move”

“Bill To Limit ADA Compliance “Abusive Lawsuits” Heads To Governor Brown”

“Schools Must Provide Special Education To Children, Regardless If They’re Vaccinated“

This newsletter was sent April 22, 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

Family Voices Of California Annual Health Summit Highlights Report Now Available

This report recaps our 2016 Health Summit And Legislative Day and provides information on speakers and panel content, breakout sessions, legislative meetings, and conference feedback. To read the report, click here.

Statewide Network Of CCS Advocates Issue Document With Recommendations And Principles For The DHCS To Use In Their CCS Redesign Process

The document, “Principles For The Future Of The California Children’s Services Program,” recommends that the CCS redesign should address family partnerships, program standards, provider network, continuity of care, monitoring, and rates. We hope this information will assist individuals as they think about and advocate for improved services for children and youth with special health care needs. To read the document, click here.

Family Voices Of California Supports Two Key Foster Care Mental Health Initiatives

In conjunction with the National Center For Youth Law, Family Voices Of California wrote letters of support for SB 1291 and SB 1174. SB 1291 requires that county mental health plans create a subsection for youth and that they also include an annual foster care mental health plan that details the services available to these children. SB 1174 allows the Medical Board Of California to confidentially collect and analyze data, and, when warranted, look into physicians who frequently prescribe medication that is over the recognized safety parameters for children. To read the Daily Democrat’s related article on increased oversight of psychotropic medication use, click here.

Medi-Cal Expands To Include Undocumented Children

Beginning May 16, Medi-Cal will widen its coverage to incorporate undocumented children under 19. For those families exceeding a certain income bracket, a low-cost premium may be required. If you’d like to take action now, it’s suggested that children be placed in restricted Medi-Cal where they’ll be automatically enrolled in full-scope coverage on May 16. It’s anticipated that roughly 170,000 children will qualify for the program. Click here for a helpful one-pager, and here to read California Health Report’s article on ensuring proper outreach is done to encourage enrollment.

GIVE INPUT

Letter To DHCS: Recommendations For More Child-Focused Medi-Cal Health Indicators In 2017

You have the unique opportunity to help improve the quality of health care for more than half of California’s kids—many with disabilities. By signing the letter of support drawn up by Children Now, you’ll encourage the DHCS to collect data focused on ensuring that kids have the care they need to grow up strong—physically, emotionally, and cognitively. Reported data will also reflect patient satisfaction for families with children with special health care needs. To sign the letter, click here.

Study: Measuring Resiliency In Parents Of Children With Special Needs

Psychologists at East Tennessee State University are conducting a national study with the goal of learning more about the experiences of parents of children with special needs, how they cope with daily life stressors, and what the effects of care-giving have on their physical and emotional health. Rather than focusing on the negative aspects of family life, the researchers are motivated by positive psychological functions such as resiliency, coping strategies, and strength. If you’re a parent of a child with special needs, please consider taking 30 minutes to complete the confidential, anonymous survey by clicking here.

Study: When A Sibling Has Autism: The Effect Of Relationship On Affect

Researchers at the University Of South Dakota are looking at two relationship components, warmth and conflict, and how they’re impacted in relationships where one sibling has autism and the other is typically developing. The researchers hope to further the knowledge about these types of relationships in order to inform therapies or interventions to strengthen them. If you’re a parent of both a child with autism and a typically developing child, please consider taking the short survey (there will be a few questions for your typically developing child to answer as well). For more information on the study and to complete the survey, click here.

Upcoming CCS Advisory Group And Technical Working Group Meetings

May 11: CCS Data And Quality Measures Technical Working Group

June 3: CCS Care Coordination/Medical Home/Provider Access Technical Working Group

June 29: CCS Advisory Group Stakeholder Meeting

For information on these meetings, click here.

WEBINARS

April 26: Tips For Communicating With And Supporting The Non-Verbal Child

Sponsors: The Infant Development Association and the MAP To Inclusion And Belonging Project of WestEd Center For Child And Family Studies

Led by two pediatric speech language pathologists, this webinar is designed to help caregivers, teachers, and home visitors who work with non-verbal children think about communication development. To register, click here.

April 26: Pediatric Disaster Planning And Preparedness 

Sponsors: EMSC National Resource Center and ASPR TRACIE

ASPR TRACIE is a healthcare emergency preparedness hub that ensures all stakeholders have access to resources to improve preparedness, response, recovery, and mitigation efforts. In this webinar, two of their project directors will discuss their organization and how its resources can best assist individuals in their pediatric disaster planning efforts. To register, click here.

April 27: Genetics And Autism Spectrum Disorder

Sponsors: AIR-P and the Autism Treatment Network

In this webinar, Abha Gupta, MD, PhD, will provide a brief review of human genetics and the type of mutations researchers look for in association with ASD. She’ll focus on clinical genetic testing and then transition to the future direction and challenges in the field of ASD genetics. To register, click here.

April 28: Make Your Voice Heard: Enrollment Assisters In Public Policy

Sponsor: Families USA

Enrollment assisters have an important role to play in educating public officials and advocating on behalf of consumers. This webinar will teach you how to educate public officials about both your work and the communities you serve. It will detail how to use the Public Policy Toolkit For Enrollment Assisters and feature speakers who have been successful in engaging in advocacy. To register, click here.

April 29: A Conversation With State Officials On Medicaid Dental Managed Care

Sponsor: National Academy For State Health Policy

In this webinar, state policymakers from Arizona, Kentucky, and Pennsylvania—three states that administer Medicaid benefits through managed care contacts that include both medical and dental services—will share their insight on ensuring contractors and subcontractors maintain an adequate network of dental providers, provide outreach and care coordination to members, and promote quality improvement. To register, click here.

May 6: Don’t Forget The Dads! The Important Role Of Fathers In Child And Family Health

Sponsors: American Academy Of Pediatrics, FamilY Partnerships Network, and the Committee On Psychosocial Aspects Of Child And Family Health

Fathers play a very important role in a child’s health. However, they’re sometimes not included in the conversation or institutional biases may be present that discourage their involvement. This webinar will feature three expert fathers who will share research on this topic as well as anecdotal stories from other fathers. To register, click here.

RESOURCES

Graduate School Scholarships For People With Disabilities

Organized by Go Grad, this helpful guide provides a current list of graduate scholarships available for students with disabilities. In addition, it has information on navigating the graduate school landscape, tips for those with hearing and vision impairments, and ideas for additional funding resources. To browse the guide, click here.

Your Legal Toolbox: Special Education Law For Children With Behavioral Disorders

In this three-part radio series sponsored by the Coffee Klatch, parent and special education law expert Bonnie Shinagle discusses how to ensure children receive the right accommodations, proper education, and appropriate school/IEP placement under special education law. To listen to parts one and two, click here (scroll down to learn about part three, which will be released soon).

Access To Care For Children With Special Health Care Needs: The Role Of Medicaid Managed Care Contracts

This MACPAC report looks at how Medicaid managed care contracting terms ensure access to care for children with special health care needs. It presents findings from the analysis of state contracts supplemented with interviews with state Medicaid officials, managed care organization representatives, consumer advocates, and other stakeholders. To read the key findings or download the entire report, click here.

Helping Families Of Children With Special Needs Understand Deductibles

The latest blog post from the National Center For Family Professional Partnerships lays out one of the most confusing aspects for families of children with disabilities: deductibles. Many patients will choose plans with cheaper deductibles, and this often means fewer benefits. This could be especially troubling to families who have children with complicated health care needs. To read the blog post, click here.

SPECIAL EVENT

Understanding The Puzzle: 9th Annual Autism Spectrum Disorders Conference

Sponsored by Stanford Autism Center at Lucile Packard Children’s Hospital Stanford, this conference gives community members a chance to learn about new autism research and therapies. Keynote speakers include Catherine Lord, PhD, Peter Mundy, PhD, and various Stanford researchers. Parents, teachers, pediatricians, psychologists, caregivers, media, and anyone interested in autism are interested are invited to attend. For more information and registration instructions, click here.

ARTICLES

“CDC Confirms Zika Can Cause Brain Defects In Babies”

“Rural Kids Face Special Challenges When Seriously Ill”

“How To Get Your Kid To Do What You Say, Without Punishing”

“Netflix Agrees To Offer Audio Description Tracks On More Titles”

“California Formally Moves To Merge General And Special Education”

“Autism Wandering Bill Gains Momentum”

“New Polio Vaccine Rolled Out In Massive Worldwide Switch”

“Running To Beat Schizophrenia”

“Birth Spacing May Influence Autism Risk”

“Low Special Education Graduate Rates Haunt Educators”

“A Dearth Of Hospital Beds For Patients In Psychiatric Crisis”

“People Who Avoided Illness Could Be Key In Treating Those Who Didn’t”

“Parents Find Ways To Mitigate Bullying, Teasing”

“I Shouldn’t Have To Fight To Get My Son With Special Needs Into A Public School Classroom”

You can view the document below or download it by clicking here. We hope this information will assist you as you think about and advocate for improved services for children and youth with special health care needs.

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

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

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”

A new report from the National Center on Birth Defects and Developmental Disabilities‘ Autism and Developmental Disabilities Monitoring Network shows that many children who are living with Autism Spectrum Disorder (ASD) are not receiving comprehensions evaluations when developmental concerns are initially identified. As these children need services and support both now and as they mature into adolescence and adulthood, more needs to be done to ensure they are evaluated as soon as possible.

If you’d like more information on the network’s study, please read the full report or check out the summary of the key findings. The key findings report has  identified five important takeaways:

1. The estimated percentage of children with ASD remains high.

About 1 in 68 or 1.5% of children were identified with ASD based on tracking in 11 communities across the United States in 2012.

• According to previous reports, the percentage of children identified with ASD increased between 2002 and 2010.
• The new report shows no change between 2010 and 2012 in the percentage of children identified with ASD.

2. It is too soon to tell if the percentage of children identified with ASD is still increasing or has stabilized.

Here are two reasons why it is too soon to tell:

• While the average percentage of children identified with ASD in all 11 communities stayed the same, in two communities, the percentage of children identified with ASD increased significantly between 2010 and 2012.
• The percentage of children identified with ASD ranged widely by community—in communities where both health and special education records were reviewed, estimates ranged from a low of 1.2% in parts of South Carolina to a high of 2.4% in parts of New Jersey.

CDC will continue to track ASD over time so as to better understand if the percentage of children identified with ASD is staying the same or continuing to increase.

3. Children identified with ASD are not receiving comprehensive developmental evaluations as early as they could be.

Most children identified with ASD had concerns about their development noted in their health and/or special education records by age three years. Yet, less than half of children with ASD received a comprehensive developmental evaluation by this same age. A lag between first concern and first comprehensive developmental evaluation may affect when children are being diagnosed and connected to the services they need.

4. Black and Hispanic children are less likely to be identified with ASD. Those that are identified with ASD receive comprehensive developmental evaluations later than white children who are identified with ASD.

Previous research has not shown that black or Hispanic children have a lower risk than white children to develop ASD. However, since ADDM data showed that black and Hispanic children were less likely to be identified with ASD, it is possible that these children face socioeconomic or other barriers resulting in a lack of or delayed access to evaluation, diagnosis, and services.

5. Schools play a vital role in evaluating and serving children with ASD.

The percentage of children identified with ASD was highest in all communities combined where both health and special education records were reviewed compared to all communities combined where only health records were reviewed.

Earlier this month, Yaneth, Lillian, and Eileen from Family Resource Navigators in San Leandro presented Assemblymember Rob Bonta with an award honoring his work on AB 187 and thanking him for being a champion for children and youth with special health care needs. The ladies also shared a bit about their children and why CCS is so crucial for the continued well-being of our most vulnerable population. Check out a video of the award presentation below.

FVCA families attended a key budget subcommittee meeting in Sacramento on March 15th which ruled, thanks to chairman Tony Thurmond, that the Department of Health Care Services’ push to move roughly one-fifth of the state’s medically vulnerable children to managed care come January 2017 would have to be “shelved and sent back to the drawing board.”

Thurmond stated that he didn’t want to change the existing CCS system given its longevity and the apparent satisfaction of the children’s families. “If this is one of the oldest programs around and it’s something we can hold up as a shining example of how to do things right, then let’s not mess with it,” Thurmond said.

For more information and a look a a few FVCA families who attended the subcommittee meeting, check out California Healthline’s article State Rebuffed, Won’t Move Fragile Kids to Managed Care—For Now.