SSI Apps Now Online, Important CHIP Resources, & A High School Transition Report

fvca Latest News April 25, 2017April 25, 2017

This newsletter was sent April 25, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

NEWS

Supplemental Security Income Applications Now Available Online For Individuals 18 To 65

The Social Security Administration recently launched an online Supplemental Security Income (SSI) application open to individuals 18-65 who meet certain requirements. Those with limited English proficiency can also use the new online service to request an appointment for an in-person claim or teleclaim in the language of their choice. In addition, SSI and disability applications can now be filed online at the same time. For more information, click here.

RESOURCES

Report: Are High School Students With Disabilities Prepared For Life After School?

A new report funded by the U.S. Department Of Education explores the transition experiences of students with disabilities during high school graduation time. Volume 1 compares their experiences to those of their typically developing peers, finding that youth with Individualized Education Plans (IEPs) are more likely to be socioeconomically disadvantaged and encounter health problems. Volume 2 compares students across disability categories, finding that youth with autism, intellectual disabilities, and multiple disabilities are most likely to receive academic modifications, but least likely to receive other forms of academic support. Click here to read Volume 1, and here to read Volume 2 for full report findings.

State Perspectives On Children’s Coverage In The Changing Health Policy Landscape

A new issue brief from the National Academy For State Health Policy (NASHP) outlines key principles concerning children’s coverage that policymakers should consider as health decisions are deliberated at the national level. As it stands, the future of the Children’s Health Insurance Program (CHIP) remains uncertain past September (more information here). To ensure kids’ coverage remains a priority, NASHP convened a group of CHIP and Medicaid officials to discuss key issues. To read the brief highlighting main themes, click here.

Related

May 4 webinar: Resources To Advocate For CHIP Renewal In California
NASHP’s survey of CHIP directors from all 50 states – looks at how the country is budgeting and planning for the program considering its uncertain future
CHIP Offers Families With Seriously Ill Kids More Financial Protection Than ACA Plans – Kaiser Health News article which discusses a study that found families’ out-of-pocket costs would likely rise if chronically ill children shift from CHIP to marketplace plans

Report: The Primary Care Pediatrician And The Care Of Children With Cleft Lip/Palate

The American Academy Of Pediatrics has released a new report that provides background on cleft lip and palate (CL/P) and multidisciplinary team care, information about typical timing and order of cleft-related care, and recommendations for cleft/craniofacial teams and primary care pediatricians in the care of children with CL/P. The report recognizes the important role of the primary care pediatrician in making a timely diagnosis, providing ongoing health care maintenance, and functioning as an advocate for the patient and a liaison between the family and the craniofacial/cleft team. To read the report, click here.

The Next Seven Achievements In Pediatric Research: Predictions From The AAP

The American Academy Of Pediatrics recently published an article that reflects on past pediatric research progress and predicts what’s next in the field. Up-and-coming topics include new immunizations, cancer immunotherapy, genomic discoveries, quality improvements in science, identification of early antecedents of adult health, the impact of social-environmental influences on biology and health, and implementation and dissemination research to reduce global policy. To read the press release, click here (subscription required for full article).

WEBINARS

Recording: Family Leaders Engaging With Title V Programs & The Block Grant Process

Hosted by: Family Voices. To watch the webinar, click here.

April 26: Aligning Clinical Practice With Diabetes Prevention: Screen, Test, And Refer

Hosted by: California Medical Association

More information and registration here (you must create an account to register).

April 27: The ABLE Act: A Tool For Financial Stability And Employment Outcomes

Hosted by: The LEAD Center

More information and registration here.

April 27: Inside UCSF: Latest Advances In Autism Research, And How You Can Help

Hosted by: SF Autism Society

More information and registration here.

May 3: Best Practices For Promoting Developmental Screening

Hosted by: Family Health Outcomes Project

More information and registration here.

May 3: Mental And Behavioral Health Of Rural Children: Insights From The CDC MMWR Rural Health Series

Hosted by: Rural Health Information Hub

More information and registration here.

May 4: Resources To Advocate For CHIP Renewal In California

Hosted by: The California Children’s Health Coverage Coalition

More information and registration here.

May 8: Supporting Sensory Needs In Children And Teens With Autism

Hosted by: Autism Research Institute

More information and registration here.

May 11: Community Paramedicine: A New Approach To Serving Complex Populations

Hosted by: The Center For Health Care Strategies

More information and registration here.

May 16: Working With Adult Allies

Hosted by: National Center For Family/Professional Partnerships, Autistic Self-Advocacy Network, Kids As Self Advocates, & Youth MOVE

More information and registration here (webinar for youth only).

May 17: Supported Decision Making: Planning For Medical Decision Making

Hosted by: The Arc Center For Future Planning

More information and registration here.

ARTICLES

Why In-Home Care for California’s Needy Could Strain County Budgets

Seeing Outside The Disability Box

Guaranteeing Health Care For Children In The United States

Diabetes Rates Rising Fastest Among Minority Youth

What To Expect During A Newborn Screening Panel

F.D.A. Strengthens Warnings For Painkillers In Children

Health Care Failed My Son – And I’m A Doctor

Lead Found At Two San Marcos Schools, As District Tests For The Toxin

Disabled Placards For Thousands Of Dead Californians Part Of Program Abuse

Researchers Seek Juvenile Justice Alternatives For Children Under 12

WATCH: A Race to The US to Save A Newborn’s Eyesight

F.D.A. Warns Of Products Claiming To Cure Autism

Stalking The ‘Unknown Enemy:’ Doctors Scope Out Rare Diseases

Tackling Obstacles To Finding Care For Young Adults With Hydrocephalus

Pediatricians See More Trump-Related Trauma In Kids

Black U.S. Babies Still More Likely To Die Than White Infants

Transition Best Practices, Family Engagement Hearing Recap, & New Stanford Webinar Series

fvca Latest News April 14, 2017

This newsletter was sent April 11, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

NEWS

Select Committee On Children With Special Needs Holds Hearing On Family Engagement

The Senate Select Committee on Children With Special Needs convened on April 3 for an informational hearing on family engagement. The Committee was established in 2015 by Senator Richard Pan to help strengthen systems of care for children and youth with complex needs. Ted Lempert, president of Children Now, opened the hearing by discussing opportunities for deepening family engagement in policymaking. Juno Duenas, executive director of Family Voices of California, followed with comments on the importance of family representation with examples from other states. Alice Mayall and Kausha King (a Project Leadership graduate) provided parent perspectives, while 14-year-old J.C. Aguirre (who has been involved in legislative advocacy for over 3 years!) offered ideas on how to better include students with disabilities in decision making. Katie Schlageter of Alameda County California Children’s Services provided input on engagement models that work, and California Department Of Health Care Services director Jennifer Kent gave a review of the current state of engagement efforts.

To watch a recording of the hearing, click here.

Advocates Must Continue To Protect Medi-Cal, Services For Children With Disabilities

Although the proposed American Health Care Act was not successful, the new Administration is continuing to examine ways to restructure access to health care that may impact Medi-Cal services for you, your child, or children you know/serve. It’s important that we still contact our legislators — even if they’re already in support of protecting critical services for children and youth with special health care needs — to let them know why Medi-Cal is such an essential program for our children.

For a list of how to contact your legislators, click here (you’ll find templates for letters and phone calls, suggested tweets while Congress is on recess, and a way to text your opinion).

Related: The National Helath Law Program’s ‘Lessons From California‘ highlights the harm that would have come to Medi-Cal from the American Health Care Act.

RESOURCES

Issue Brief: Pediatricians Reflect On Caring For Children With Special Needs

A new issue brief from the Lucile Packard Foundation For Children’s Health examines a study involving 39 key informants — 29 pediatricians and 11 parents, nurses, or other experts in the care of children with special health care needs (CYSHCN). Participants were asked about their experience and willingness to care for CYSHCN, and systemic changes that would facilitate their future participation in medical homes for these children. To view the report summarizing survey results, click here.

New Report Highlights Best Practices For Improving Transition Planning, Education

Thirty two state Title V programs have selected transition as one of their national performance measures. Got Transition’s new report pulls examples from these states of best practices (planned or underway) related to transition improvements, health care professional transition education, consumer transition training and leadership, transition communications, and interagency transition planning. To view the report, click here.

In addition, report findings were presented at a workshop for the Association Of Maternal And Child Health Programs‘ annual conference. To view a recording of the session, click here.

OPPORTUNITY FOR INPUT

RespectAbility Recruiting Twelve Youth For Nine-Week Fellowship In Washington, D.C.

RespectAbility, a nonprofit organization working to combat stigma and advance opportunities for people with disabilities, is recruiting 12 youth for their National Leadership Program this summer. They’re looking for diverse leaders from across the country who’d like to pursue careers in media, public policy, or advocacy. For more information, click here.

WEBINARS

New Webinar Series From Stanford To Focus On Hot Topics In Medicine

Stanford Medicine’s Center For Continuing Medical Education is launching a series of free webinars on hot topics in medicine, featuring experts who will provide guidance to physicians and other health professionals on controversial and challenging issues they may face. The first webinar is set for May 16 and will focus on Zika. For more information, click here.

April 11: Telling Your Story For A Public Purpose

Sponsor: Family Voices

More information and registration here (for youth and young adults with disabilities only).

April 13: From Coverage To Care

Sponsor: Catalyst Center

More information and registration here.

April 17: CalABLE Workshop For Service Providers

Sponsor: California State Treasurer

More information and registration here.

April 20: What To Do When Children Are Anxious

Sponsor: The National Institute Of Mental Health

More information and registration here.

April 20: Engaging Diverse Families In Leadership For System Change

Sponsor: Family Voices

More information and registration here.

April 25: Occupational Therapy And Sensory Processing For People With Intellectual And Developmental Disabilities

Sponsor: University Center For Excellence In Developmental Disabilities Education (UCEDD)

More information and registration here.

April 27: Understanding Depression In Teenagers

Sponsor: The National Institute On Mental Health

More information and registration here.

May 2: Organizational Strategies For Students With Autism In Middle School And Up

Sponsor: The Johnson Center For Child Health And Development

More information and registration here.

ARTICLES

Complex Child April Edition: Medicaid & Health Care

Dreaming Of A Playground For All

Patient Voices: A.D.H.D

In Health Bill’s Defeat, Medicaid Comes Of Age

Study: Wait For Developmental Specialists Often 5 Months Or More

Teens With Autism More Likely To Land In ER, Study Finds

Why Were There Fewer Microcephaly Cases From Zika Last Year?

Mom At Center Of ‘Wrongful Birth’ Debate: If Lawmakers Cared, They Would Have Called

Lead Poisoning’s Lifelong Toll Includes Lowering Social Mobility, Researchers Find

PANDAS/PANS Treatments, Awareness Evolve, But Some Experts Skeptical

Social Justice Should Be A Key Part Of Educating Health Professionals

Hispanic And White Adolescents More Likely Than Black And Asian Peers To Develop Hypertension With Obesity

Palo Alto: Special Mental Health Program Launched For Teens

We Must Continue To Protect Medi-Cal

fvca Latest News April 6, 2017July 27, 2017

The Background

On May 4, the House passed the American Health Care Act (AHCA), a measure to repeal and replace the Affordable Care Act (ACA). This bill threatened to restructure California’s Medi-Cal program, cutting care and services for children and youth with special health care needs.

Although the AHCA did not pass the Senate as written, Republicans have been crafting their own version of a health care bill — the details of which are still unknown. It’s important that we continue our advocacy to ensure any kind of health care bill does not pass.

If passed, the legislation would most likely cause states to:

stop covering certain children, such as those covered under waivers (e.g., autism waivers)
cut or reduce school therapies for children with Individualized Education Programs (IEPs)
stop covering certain services (e.g., private duty nursing, physical therapy, dental care)
reduce the extent of services (e.g., number of therapy visits)
reduce payments to health care providers, thus reducing access to care

The bill would also alter the ACA in ways that would:

weaken or eliminate protections for people with pre-existing conditions, allowing insurance companies to charge them much more for coverage
allow insurance companies to impose annual or lifetime coverage limits
allow insurance companies to stop offering essential health benefits
reduce subsidies to buy insurance and pay for health care
phase out the ACA Medicaid expansion (i.e., Medicaid coverage for childless adults)

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

Who To Contact + Contact Information

U.S. Senator Dianne Feinstein: 331 Hart Senate Office Building / Washington, DC 20510

Phone number: (202) 224-3841

Send an email by clicking here.

U.S. Senator Kamala Harris: 112 Hart Senate Office Building / Washington, DC 20510

Phone number: (202) 224-3553

Send an email by clicking here.

How To Contact + Resources

Send an Email or Letter

Use this template letter to easily explain why Medi-Cal matters. If your family doesn’t use Medi-Cal but you know someone who does, please use this template.

FVCA has also created a list of key Medi-Cal services commonly accessed by children with special health care needs, which can be found here. Reference this list to fill-in-the blanks of your email, letter, or phone script.

Make a Phone Call

Use this phone script if you’d like a framework for your message, and refer back to the list of key Medi-Cal services here, if needed. If your family doesn’t use Medi-Cal but you know someone who does, please use this phone script.

Use Social Media

Share the video “Family Stories: Medi-Cal is Critical for Children and Youth With Special Health Care Needs” on social media. Click here to re-tweet the video on Twitter. Also, use or search the hashtag #MedicaidMatters on social media to find stories and spread the word about how Medicaid/Medi-Cal is critical for children’s health.

Send a Text

Use ResistBot, a texting program that allows you to effortlessly contact your Representatives. You don’t have to download anything — just text ‘Resist’ to the number 50409 to get started.

Health Summit Photos & Videos, A 100-Page Resource Guide, & IDEA Website Input

fvca Latest News March 30, 2017March 30, 2017

This newsletter was sent March 28, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Family Voices of California would like to extend a big ‘thank you’ to all the family advocates who took the time to contact their Congressional representatives to voice concerns about the American Health Care Act, a bill which would have fundamentally restructured California’s Medi-Cal program. It was pulled from the House floor on March 24 before it could be voted on. For more information, click here.

At the end of February, Family Voices of California hosted its 15th Annual Health Summit & Legislative Day in Sacramento. Families and professionals from Humboldt to San Diego came together to discuss issues that affect children and youth with special health care needs.

For a full recap, check out our highlights report. To view photos, click here. If you’d like to browse PowerPoint presentations from panelists and watch videos of presenters, click here.

“I felt part of a larger network of people who care about my child and children like her. It felt so good to talk to people who ‘get it.’ I learned strategies to interact with my legislators, and I felt empowered!” — Health Summit attendee.

RESOURCES

Exceptional Parent 2017 Resource Guide Now Available: 100+ Pages Of Information

This compendium of resources for the special needs community is published annually by Exceptional Parent and includes a national directory for disability-specific conditions, adaptive recreation organizations, mental health resources, and more. To access the guide, click here.

Report: Over Half Of America’s Doctors Agree Climate Change Harming Kids’ Health

A new report from The Medical Society Consortium On Climate & Health outlines how climate change is negatively impacting our health and taking a greater toll on children and those living with chronic illnesses. Key concerns for kids include higher rates of asthma and allergy attacks due to air pollution, and a strain on mental health. The Consortium, a newly-formed coalition of organizations representing over half of America’s physicians (including the American Academy Of Pediatrics), plans to deliver the report to Congress, the Trump administration, and CEOs of Fortune 500 companies to push for a transition to renewable energy. To read the report, click here.

Affordable Care Act Toolkit For Self-Advocates From Autistic Self Advocacy Network

This toolkit from the Autistic Self Advocacy Network aims to explain what the Affordable Care Act (ACA) is, and why it matters to people with disabilities. The three-part guide covers how different parts of the ACA have improved health care, what concerns self-advocates have, and a glossary of common terms in plain language. Every section is screenreader-accessible. To access the toolkit, click here.

OPPORTUNITY FOR INPUT

Patient-Centered Outcomes Research Inst. Seeking Nominations For Rare Disease Panel

PCORI is looking for a new member to join its advisory panel on rare disease, which aims to bring voices from across the health care community into rare disease research. For more information on how to apply or nominate someone, click here. Deadline: March 31.

Department Of Education In Need Of User Feedback To Inform Updated IDEA Website

The Office Of Special Education And Rehabilitative Services is looking for input from users of the IDEA.ed.gov website as part of their effort to provide updated, easy-to-navigate IDEA resources to children with disabilities and their families, teachers, administrators, advocates, and other stakeholders. To leave website feedback or suggestions, click here.

WEBINARS

The National Center For Family/Professional Partnerships in collaboration with the Autistic Self-Advocacy Network, Kids As Self-Advocates, and Youth MOVE is offering a webinar series for youth and young adults focused on leadership development. The next two webinars are set to take place on April 11 (Telling Your Story For A Public Policy) and May 16 (Working With Adult Allies). For more information and to register, click here.

March 29: Childhood Adversity: Data To Help Advocate For Change

Sponsors: California Department Of Public Health and KidsData.Org

More information and registration here.

March 29: Using Evidence To Achieve Effective State Health Policy

Sponsor: National Academy For State Health Policy

More information and registration here.

March 29: David Mandell Explores Healthcare, Education, And Autism

Sponsor: Spectrum

More information and registration here.

March 29: Genetic Testing For Cardiomyopathy Families

Sponsor: Children’s Cardiomyopathy Foundation

More information and registration here.

March 30: Strategies For Improving Law Enforcement Responses To People With Behavioral Health Conditions

Sponsor: Substance Abuse And Mental Health Services Administration

More information and registration here.

March 30: Health Insurance 101 For People With Asthma And Allergies

Sponsor: Asthma And Allergy Foundation Of America

More information and registration here.

April 4: Beyond The Classroom: Strategies For Businesses And Communities To Accommodate, Support, And Encourage Inclusion

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

More information and registration here.

April 5: Can You See Me Now? Authentic Representation Of People With Disabilities On Television

Sponsor: Diversability

More information and registration here.

April 6: Autism, Electroconvulsive Therapy, And The Treatment Of Our Most Impaired Children

Sponsor: Autism Society SF Bay Area

More information and registration here.

April 12: Maintaining An Active And Healthy Lifestyle

Sponsor: National Hemophilia Foundation

More information and registration here.

April 17: CalABLE Workshop For Service Providers

Sponsor: CalABLE

More information and registration here.

April 18: Parents And Privacy: Considerations On The Digital Footprint We Create For Our Children

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

More information and registration here.

ARTICLES

Proposed Law Would Require All California Children To Be Screened For Lead (Related: Lead screening fact sheet)

Julia, A Muppet With Autism, Joins The Cast Of ‘Sesame Street’

Driven By High Asthma Rates, Central Valley Tries To Improve Indoor Air Quality

For Gideon, Infection With A Common Virus Caused Rare Birth Defects

Does Illness Help Young Adults Take Charge Of Their Own Health?

My Child Is Fighting A Rare Disease. A ‘Streamlined’ FDA Won’t Help Her

Trump’s ‘Skinny Budget’ Sows Uncertainty For Disability Programs

Nike Improves Shoe Accessibility

Infant Deaths, Stubbornly High In The U.S., Continue A Promising Decline

Cure Me? No Thanks

Medi-Cal At Risk, Home Health Bill & Feeding Study

fvca Latest News March 20, 2017March 30, 2017

This newsletter was sent March 14, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

The proposed American Health Care Act would repeal and replace the Affordable Care Act (ACA). This bill would completely restructure California’s Medi-Cal program. For a look at how these changes could impact your family, check out the Kaiser Family Foundation’s brief, What Coverage and Financing is at Risk Under a Repeal of the ACA Medicaid Expansion and video, Medicaid’s Role: What’s at Stake Under a Block Grant or Per Capita Cap.

ACT NOW — Urge Congress to protect Medi-Cal!

Send an Email or Letter

Use this template letter to easily explain why Medi-Cal matters to your family. You’ll find mailing addresses and emails for key representatives on the second page (if your family doesn’t use Medi-Cal but you know someone who does, please use this template).

FVCA has also created a list of key Medi-Cal services CYSHCN commonly access, which can be found here.

Make a Phone Call

White House public comment line: (202) 456-1111

United States Capitol switchboard (the operator will connect you with the office you request): (202) 224-3121

Use this phone script if you’d like a framework for your message, and refer back to the list of key Medi-Cal services here, if needed (if your family doesn’t use Medi-Cal but you know someone who does, please use this phone script). The Consortium For Citizens With Disabilities has also created a list of Medicaid talking points, which can be found here.

Use Social Media

Use this social media toolkit to participate in online advocacy. The toolkit includes daily action items, sample tweets, hashtags, and a Thunderclap campaign that will send out the same Twitter post from multiple people at the same exact time. To take part, click here (all you need is a Twitter account, and you must sign up by Thursday at 8am).

Send a Text

Use ResistBot, a texting program that allows you to effortlessly contact your representatives. You don’t have to download anything — just text the word Resist to 50409 to get started.

In addition, here’s a list of other resources that may be helpful:

Changes To Medi-Cal’s Eligibility Benefits In The Proposed ACA Repeal Bill (Western Center On Law And Poverty)
Why Proposed Mediciad Per Capita Caps & Block Grants Matter For Families Of Children With Special Health Care Needs (Lucile Packard Foundation For Children’s Health)
How The ACA Helps Children With Special Health Care Needs (Family Voices)
The Importance Of Medicaid To Children With Special Health Care Needs (Family Voices)
What You Need To Know: The ACHA And Home/Community Based Services
Protect Medicaid: Critical Opportunities To Support Children, Youth, And Families Involved With Child Welfare (the Center For The Study Of Social Policy)
Promoting Healthy Outcomes For Young Children And Families: Implications Of Proposals To Restrict Medicaid, CHIP, And The ACA (the Center For The Study Of Social Policy)
Protecting Rare Disease Patients: Principles For Health Coverage Reform (National Organization For Rare Disorders)

OPPORTUNITY FOR INPUT

Support Needed For Bill Seeking To Improve Medi-Cal Rates For Home Health Agencies

Advocates are urging individuals to write letters in support of AB 654, legislation that would require the Department Of Health Care Services to establish an incentive-based, supplemental payment program for home health agencies that treat children who are receiving continuous nursing care or private duty nursing services at home through Medi-Cal. To access a sample letter, click here, to read a fact sheet on AB 654, click here, and to read a separate fact sheet on incentive payment legislation, click here.

Related: Families Struggling To Find At-Home Nursing Help (article further discussing AB 654)

Researchers Recruiting Young Children With Disabilities To Participate In Feeding Study

Food science researchers from Washington State University are conducting a feeding study on children with down syndrome and/or autism (1-4 years old). They’re looking to address texture perception and sensitivity. Participation will take place over one week and involves recording your child trying food. Families selected to participate will receive a $125 gift card. Email Ben at charles.bernhard@wsu.edu.

Researchers Seeking Input On School-Based Social-Emotional Services For Autism

Students at the University Of South Dakota are conducting research on behalf of the South Dakota Leadership Education in Neurodevelopmental and Related Disabilities program regarding social-emotional school-based services for children with autism. They’d like to know what kinds of social-emotional services children receive, and what aspects of these services could be improved. To take their online survey, click here.

WEBINARS

The National Health Law Program’s webinar series, “Protect Medicaid,” examines how proposed federal cuts to the program would impact our most vulnerable populations. The next webinars are scheduled for March 17 (Medicaid Expansion), March 24 (Consumer Protections/Due Process), and April 7 (Section 1115 Authority). To register, click here, and to read related issue briefs What Makes Medicaid, Medicaid? Services and Evaluating Medicaid Block Grant & Per Capita Cap Proposals, click here and here.

March 22: Research Updates On Transcranial Magnetic Stimulation (TMS) For Autism

Sponsor: Autism Research Institute

More information and registration here.

March 22: Family And Community Engagement In Addressing Childhood Trauma

Sponsor: Center For The Study Of Social Policy

More information and registration here.

March 23: Teaching Social Expectations Around Hygiene And Sexuality To Young Men With Verbal Autism And Aspergers

Sponsor: Parents Helping Parents

More information and registration here.

March 23: Being The Difference In Difficult And Shifting Times: Is It Lobbying? Is It Not?

Sponsor: National PLACE

More information and registration here.

March 28: Navigating The Transition Years For People With Autism: From Preteen To Adulthood

Sponsor: The Johnson Center For Child And Health Development

More information and registration here.

March 29: Using Evidence To Achieve Effective State Health Policy

Sponsor: National Academy For State Health Policy

More information and registration here.

March 30: Conservatorship: What People With Disabilities And Families Need To Know

Sponsor: University Center For Excellence In Developmental Disabilities (USC UCEDD)

More information and registration here. Note: This webinar will be presented in Spanish.

March 30: Effective Grassroots Advocacy

Sponsor: National PLACE

More information and registration here.

March 30: Irritable Kids: What The Research Tells Us

Sponsor: National Institute Of Mental Health

More information and registration here.

March 30: Autism And The Criminal Justice System: What Happens When Your Adult Child Is Detained Or Arrested?

Sponsor: Parents Helping Parents

More information and registration here.

March 31: How To Get The Best Wheelchair To Meet Your Needs

Sponsor: United Spinal Association

More information and registration here.

ARTICLES

GOP Plan To Replace Obamacare Calls For Medicaid Caps

A Boy Who Can’t Speak Depends On Medicaid. What Happens To Him If It’s Cut?

Orange County To Get First Emergency Psychiatric Beds For Children

Disabled, Shunned, And Silenced In Trump’s America

In Breakthrough, Researchers Detect Autism Signs In Infants

Syphilis Among California Newborns Spikes Amid Broader STD Epidemic

Education Department Records Uptick In Special Ed Enrollment

Simulation Lab Helps Parents Care for Kids At Home

Study Finds Medicaid Waivers Help Parents Stay Employed

My Autistic Sister Has A Voice That Needs To Be Heard

CDC Report: Youth Suicide Rates In Santa Clara County Highest In Palo Alto, Morgan Hill

New Report Finds Children At A Higher Risk Of Led Exposure In Several California Cities

Doctors Consider A Last Best Hope For Obese Teenagers: Surgery

Well-Child Care: Steady Growth In Breadth And Content

People With Autism, Intellectual Disabilities Fight Bias In Transplants

When You Don’t Speak The Same Language As Your Child’s Doctor

Is Teacher Preparation Failing Students With Disabilities?

A Mysterious Medical Condition Gets A Name — And A Genetic Link To Deafness

Durable Med Equip (DME) Stories, Innovative Care Coordination, & A Caregiver Survey

fvca Latest News March 20, 2017

This newsletter was sent February 14, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Note: The next Family Voices of California newsletter will be published on March 14 due to our annual Health Summit & Legislative Day—follow along on Facebook and Twitter!

Have you ever had issues (length of wait, cost, etc.) accessing durable medical equipment (wheelchairs, walkers, lifts, etc.) for your child with special health care needs? The Department of Health Care Services (DHCS) has asked Family Voices of California to collect family input to help inform the California Children’s Services redesign team. We encourage you to take our survey and share your experience. To access the survey, click here.

All responses submitted by February 17 will be sent to the DHCS, but we welcome input past this date as it will be used in future advocacy efforts.

Calling All Youth With Disabilities 13-24 Years Old: Join Our Health Summit Youth Track!

We’re excited to be hosting our very first youth session at the Health Summit & Legislative Day in partnership with Youth Organizing! Disabled & Proud (YO!). Our youth track will address pediatric to adult care transition topics and will allow attendees to network with their peers and also learn from adults. To register, click here (flyer here). Date: Feb. 27

RESOURCES

Superintendent’s Report: Cutting Medicaid: A Prescription To Hurt The Neediest Kids

The School Superintendents Association (AASA) released a report last month after surveying states to assess the school-based impact potential Medicaid per-capita caps and block grants could have on children. They received close to 1,000 responses across 42 states from superintendents, school officials, special education directors, and agency leaders. The top two responses reflected deep concern over special education—specifically, how districts would maintain the program in a block grant situation, and also how students in poverty would be impacted if Early And Periodic Screening, Diagnostic, And Treatment (ESPDT) services were no longer reimbursable. The AASA strongly urges Congress to reach out to school leaders for informed insight. To read the report, click here, and to read an article from the Washington Post discussing findings, click here.

Report: Innovative Approaches In Care Coordination And Care Delivery For Children With Special Health Care Needs Among Safety Net Health Plans

The Association For Community Affiliated Health Plans examined 12 of its member plans nationwide (two in California: Health Plan of San Mateo and Inland Empire Health Plan) in an effort to highlight innovative models of care coordination for children with special health care needs. The report also provides a narrative about the range of plan efforts to improve outcomes, access to health care services, and other needed supports. To read the report, click here.

New Interactive Title V, Medicaid, And CHIP Worksheets From The Catalyst Center

The Catalyst Center has created new interactive worksheets for Title V program staff, family leaders, and other stakeholders. The worksheets provide an overview of Title V, Medicaid, and the Children’s Health Insurance Program (CHIP). Each worksheet includes resources you can use to find and insert state-specific information to help demonstrate the importance of Title V, Medicaid and CHIP for children with special health care needs. They were created as companion materials to the Catalyst Center’s Public Insurance Programs and Children with Special Health Care Needs: A Tutorial on the Basics of Medicaid and the CHIP. To view the worksheets, click here.

OPPORTUNITY FOR INPUT

Share Your Health Care Transition Challenges With The Hydrocephalus Association

The Hydrocephalus Association will host a two-day workshop this month that will examine ways to improve the transition from pediatric to adult care for patients with hydrochephalus. The workshop will lead to a white paper that will propose a national plan of action and a set of measurable goals that can be reached within 5 to 10 years. To help further inform their research, the Hydrocephalus Association is encouraging those who have faced challenges transitioning (finding support in college, health insurance issues, locating a new neurologist, etc), to share their stories by emailing Jennifer at jennifer@hydroassoc.org. For more information, click here.

Survey Of Caregivers For People With Disabilities: Family, Individual Needs For Support

The Arc is conducting a survey of caregivers for people with disabilities regarding their needs and the needs of their family members. The goal is to learn more about the experience of these caregivers. This survey was last conducted in 2010, and responses were compiled into a report which can be found here. To take the survey, click here.

Research Organization WestEd Seeks Feedback On Educational, Assistive Technology

The educational research organization WestEd is looking for parents of students with special needs (K-3rd grade) to participate in a research initiative. They’re looking to learn more about the use of educational and assistive technology and help further its development in partnership with Twin Cities PBS. Participation consists of a one-hour phone interview and parents will be given a $50 VISA gift card for their time. If you’re interested, email Laura at lgluck@wested.org or call her at (650) 381-6442 (please identify your child’s age and grade level in your message).

WEBINARS

February 16: Patient Advisory Councils From Scratch: Putting Together Nuts And Bolts

Sponsor: The Center For Care Innovations

More information and registration here.

February 17: Life Disabilities Found In Individuals With Prenatal Alcohol Exposure

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

February 21: CDC Public Health Grand Rounds: Overcoming Barriers To Medication Adherence For Chronic Diseases

Sponsor: Centers For Disease Control And Prevention

More information and registration here.

February 21: Medicaid And Public Schools

Sponsor: Learning First Alliance

More information and registration here.

February 21: The Evaluation Process

Sponsor: Family Network On Disabilities

More information and registration here.

February 22: Race, Equity, And Ethics: Questions On Child Welfare And Predictive Analytics

Sponsor: Alliance For Racial Equity In Child Welfare

More information and registration here.

February 22: Creating Systems For Individuals With Co-Occurring Mental Illness And Intellectual Disabilities

Sponsor: Substance Abuse And Mental Health Services Administration (SAMHSA)

More information and registration here.

February 23: Housing For People With Intellectual And Developmental Disabilities

Sponsor: UCS University Center For Excellence In Developmental Disabilities (UCEDD)

More information and registration here.

ARTICLES

Complex Child February Edition: Annual Feeding Tube & GI Issue

Children’s National Announces The Creation Of First-Of-Its-Kind Rare Disease Institute

I Don’t Speak For Laura

With Talk Of Medicaid Changes, Waiver Services May Be At Risk

Raising Awareness Of Congenital Heart Defects

Medicaid Changes Should Include Care For Special Needs Children

Trump Education Nominee Confirmed In Spite Of IDEA Concerns

Aging Out Of Pediatric Care: A Cautionary Tale

Depression Strikes Today’s Teen Girls Especially Hard

Fresno Unified Oks Six Student Health Centers – But Staffing A Concern

This Foster Father Takes In Only Terminally Ill Children

Reminder: Register For Health Summit, Medical Cannabis, & New CYSHCN Data

fvca Latest News February 4, 2017February 4, 2017

This newsletter was sent January 31, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Family Voices of California Health Summit & Legislative Day To Be Held Feb. 27-28

Registrations for our 15th annual Health Summit & Legislative Day are quickly filling up! This conference brings together families, providers, state agencies, and others to identify and address the health challenges that affect children and youth with special health care needs. We are honored to have Senators Richard Pan and Holly Mitchell as this year’s keynote speakers. Panel topics will cover the future of California Children’s Services/The Whole-Child Model, mental health, and Medi-Cal. To view the agenda, click here, and to register, click here (free for families, $50 suggested donations for professionals).

New to the summit this year is our youth track—a separate session organized and led by youth and young adults with disabilities that will focus on health care transition. Co-sponsored by Yo! Disabled And Proud, we hope this session will serve as a safe space for 13-24 year-olds to discuss health care issues with peers while also learning from adult role models who have previously transitioned from pediatric to adult care themselves. To register for the youth track, click here (select the youth track drop-down option).

RESOURCES

Report: The Health Effects Of Cannabis And Cannabinoids: The Current State Of Evidence And Recommendations For Research

The National Academies Press has issued a report compiling research from a number of individuals and groups on the health effects of medical cannabis. It provides a history of cannabis, its policy landscape and public opinion, and its various therapeutic uses for both physical and mental ailments. The publication also highlights research recommendations in this “pivotal time in cannabis policy and research,” which include a call for more pediatric-focused research. To read the report, click here.

New City, County-Wide Data On Children With Special Health Care Needs In California

Kidsdata.org has released new wide-ranging data on children with special health care needs in collaboration with the Child And Adolescent Health Measurement Initiative. By providing local estimates of demographics, insurance coverage, impact on families and quality of care, the data offers a deeper understanding of the disparities and needs within the community. To access the data, click here.

The Year Ahead: Medicaid Works! A Fact Sheet From The National Health Law Program

This fact sheet details how Medicaid continues to help tens of millions of Americans annually. With the new administration suggesting they will pursue changing the program through block grants or capping or cutting federal funding, attorneys from The National Health Law Program created this fact sheet to illustrate how Medicaid works as is, and that we’re all better because of it. To read the fact sheet, click here.

OPPORTUNITY FOR INPUT

Disability Rights California Seeks Feedback On Regional Center Child Therapy Services

Disability Rights California is collecting information from families on the ability of regional center clients to obtain therapy services through Medi-Cal or private insurance. To complete a short survey about your child, click here (includes information on how to submit your answers).

Stanford Researchers Recruiting Boys With Disabilities For Eye Gaze, Social Skills Study

The Center For Interdisciplinary Brain Sciences Research at Stanford is looking for boys with disabilities ages 8-18 to participate in a study investigating behavioral training methods to improve eye contact and social skills. Participants must be local and be able to tolerate a 30 minute MRI scan. An honorarium of $100 will be provided. For more information, click here.

Upcoming CalABLE Events Scheduled Throughout California

During the month of February and early March, multiple California Achieving A Better Life Experience (CalABLE) informational sessions are scheduled for Sacramento, San Rafael, Oxnard, Simi Valley, Chatsworth, Pomona, Torrence, Culver City, and Stockton. For the full list of dates and times, click here.

WEBINARS

February 1: Treatment Across The Lifespan For Persons With A Fetal Alcohol Spectrum Disorders

Sponsor: The Arc’s FASD Prevention Project

More information and registration here.

February 2: The ABCs Of Applied Behavioral Analysis

Sponsor: American Autism Association

More information and registration here.

February 7: Tips To Interact Effectively With Law Enforcement

Sponsor: Sibling Leadership Network

More information and registration here.

February 8: One Size Does Not Fit All: Individualized Therapy

Sponsor: National Hemophilia Foundation

More information and registration here.

February 9: Integrated Health: The Basics

Sponsor: Catholic Charities USA

More information and registration here.

February 14: Prefrontal Cortical Circuits In Schizophrenia: Molecular Vulnerabilities, And Clues For Treatments

Sponsor: Brain & Behavior Research Foundation

More information and registration here.

February 15: Self-Injurious Behavior

Sponsor: Autism Research Institute

More information and registration here.

February 16: Relationship-Centered Care: A Healthcare Providers’ Guide To Patient Engagement, Shared Decision Making, And Improved Outcomes

Sponsor: Health Management Associates

More information and registration here.

February 16: Managing Your ABLE Account To Help Reach Your Goals

Sponsor: National Down Syndrome Society

More information and registration here.

February 23: Housing For People With Intellectual And Developmental Disabilities

Sponsor: University Centers For Excellence In Developmental Disabilities Education

More information and registration here.

ARTICLES

Behavioral Health News Winter Edition: Transforming Systems Of Care For Children

Parents With Autistic Kids Could Lose Care In ACA Repeal

High Prices For Orphan Drugs Strain Families And Insurers

Steinberg Institute Gets $1.5 Million From Sutter For Mental Health

Pioneering Spinal Surgery In The Womb Boost Babies’ Odds

Op-Ed: The Non-Politics Of Disability

Tesco Introduces New Signs On Disabled Toilets To Recognise ‘Invisible Disability’

Food Allergies Impose An Additional Burden On California Families Struggling To Make Ends Meet

New Technology May Give Speechless Voice Of Their Own

Dads Turn Heartbreak Into Unrelenting Focus On A Cure

California’s Undocumented Kids—Why They Could Be First To Lose Medical Care Under Trump

Was The Epi-Pen Hack Ethical?

Grandmother Of Disability-Rights Movement, Zona Roberts, ‘We Will Prevail’

Is Betsy DeVos Against Enforcing Disability Rights Laws—Or Does She Not Understand Them?

IDEA Concerns Linger Over Education Nominee

Mom Spearheads Ouchless ER, Whole Child Model Delayed, & Autism Program Sessions

fvca Latest News January 23, 2017

This newsletter was sent January 17, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

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

Marin Mom Collaborates With Local Hospital To Spearhead “Ouchless” ER Project

During an intense bout of croup, 3-year-old Aiden Taylor passed out at home and was rushed by ambulance to Marin General Hospital with his mother, Cathy — his father, Michael, followed by car. Although Aiden recovered from the infection, the calloused emotional treatment the Taylors experienced in the emergency room in early 2015 spurred Cathy’s commitment to transform Marin General’s pediatric emergency department to “Ouchless” — a holistic philosophy of care that not only addresses children’s physical needs, but also their (and their parents’) emotional needs.

Read Cathy’s story here.

NEWS

Whole Child Model Implementation Date Delayed: Transition To Begin July 1, 2018

The Whole Child Model, or the state’s plan to streamline care by transitioning thousands of medically complex children currently enrolled in California Children’s Services to Medi-Cal managed care plans, has been pushed back one year. Previously, the Department Of Health Care Services had planned to start transitioning children in certain counties beginning July 1, 2017. On Jan. 10, Governor Brown introduced the 2017-18 budget, which detailed select initiatives that would be delayed—the Whole Child Model being one of them (refer to page six of the Budget Highlights here). The Governor also signed SB 586 into law on Sept. 25, a bill which ensures children with special needs will be protected during the Whole Child Model transition. The extended implementation timeline may come as a relief for many SB 586 advocates.

RESOURCES

Program Sessions From Autism Society San Francisco’s Conference Now Available

At the end of last year, the Autism Society Of San Francisco held a conference titled “Into The Future: An Adult Autism/Developmental Disabilities Planning Workshop.” They’ve now made recordings and slides from all program sessions available online. Topics include accessing health care, writing transition plans, planning for care after a caregiver is gone, and more. To browse conference sessions, click here.

Study Evaluates Transition Experience Of Youth And Young Adults With Diabetes

Researchers surveyed 602 type 1 diabetes patients, ages 18 to 30, and discovered that 21% experienced a gap in care of at least six months while transitioning from pediatric to adult care. The study, published in Diabetes Care, emphasized the need for more intense efforts to integrate transition preparation counseling and care coordination within pediatric type 1 diabetes education. Although researchers found that over 90% of youth with type 1 diabetes (still in pediatric care) received some counseling on diabetes management and screening tests, most patients expressed that they wanted to stay with their pediatric provider because they felt attached. To read the executive summary, click here (full article requires payment).

50-State Survey Reflecting Key Medicaid And CHIP Information As Of January 2017

The Kaiser Family Foundation has compiled a statewide survey on eligibility, enrollment, renewal, and cost sharing polices in Medicaid and the Children’s Health Insurance Program (CHIP). This annual survey identifies changes in these polices that took place in the past year. Among other findings, the survey discovered that Medicaid and CHIP are the central sources of health coverage for low-income children and pregnant women, with 49 states covering children and 34 states covering pregnant woman with incomes at or above 200% federal poverty level. To view the report, click here.

OPPORTUNITY FOR INPUT

Survey: Help Identify Barriers To Medi-Cal Enrollment For Former Foster Youth

Young adults who were in foster care at 18 or older qualify for Medi-Cal coverage until the age of 26—regardless of income or immigration or status. Children Now is looking to learn about the community’s experience working to ensure these eligible former foster youth have Medi-Cal. Specifically, they would like help identifying barriers to enrollment or retention, supporting efforts to ensure coverage, and providing resources. To take the survey, click here.

WEBINARS

Upcoming Webinar Series: Disability-Competent Care (Feb. 8 to March 22)

Sponsor: Resources For Integrated Care

Topics: long-term services and supports, care coordination, behavioral health, and more. More information and registration here.

January 19: Tourette Syndrome And ADHD: Starting A New Year With Health, School, And Home Supports

Sponsors: National Resource Center On ADHD and Tourette Association Of America

More information and registration here.

January 19: Understanding Depression In Teenagers

Sponsor: National Institute Of Mental Health

More information and registration here.

January 19: IEP Series: Effective Parent-Teacher Conferences

Sponsor: Family Network On Disabilities

More information and registration here.

January 23: Mental Health Research: What You Need To Know

Sponsor: National Institute Of Mental Health

More information and registration here.

January 24: After Obamacare: The Future Of U.S. Health Care

Sponsor: Center For Health Journalism

More information and registration here.

January 25: Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure

Sponsor: American Academy Of Pediatrics

More information and registration here.

January 25: Inclusion Through Innovation

Sponsor: National Down Syndrome Society

More information and registration here.

January 26: Mental Health Services In Schools For Students With Intellectual / Developmental Disabilities

Sponsor: University Center For Excellence In Developmental Disabilities

More information and registration here.

February 1: Treatment Across The Lifespan For Persons With Fetal Alcohol Spectrum

Sponsor: American Academy Of Pediatrics

More information and registration here.

ARTICLES

Video: Kansas Parents Of Two Girls With Microcephaly Share Joys, Struggles Of Family Life

Related: Hartley Hooligans Blog (by the same family featured in the above article)

January Edition Of Complex Child Magazine: Emotions

Newborns Often Gen Unapproved Drugs. Now, A Push For Data

New Guidance Outlines Civil Rights Protections For Students With Disabilities

Telemedicine Helps Keep Kids In The Classroom

The Aging Of The Population With Down Syndrome Is A Positive Sign

Feed Your Kids Peanuts Early And Often, New Guidelines Urge

Nonprofits, Philanthropy, And Pediatric End-Of-Life Care—A Gap To Be Filled

Many U.S. Kids Live Far From Child Surgery Specialists

Health Claims On The Rise For Kids With Type 2 Diabetes, Obesity-Related Conditions

IEPs/504 Plans: Pediatrician Is Often First Stop For Families Navigating Educational Issues

With Too Few Nurses For Kids’ Home Care, Parents Push For Action

Gov. Brown’s Budget Shows Support For Medi-Cal

CVS Slashes Price Of Substitute EpiPen Auto-Injectors To $109.99

Marin Mom Collaborates With Local Hospital To Spearhead “Ouchless” ER Project

fvca Latest News January 17, 2017January 17, 2017

Cathy, Aiden, and one of their dogs, Taz

“When I arrived at the ER, the nurse was very cold and explained the hospital was enforcing a one visitor per patient rule because of a high incidence of flu,” Cathy said. “Aiden was clinging to me, asking where his dad was, but wasn’t able to see him because the nurse made me choose between my husband or myself.”

Cathy, an ultrasound technician at the University Of California, San Francisco, also noticed further red flags that added to the chaos. When a young boy was brought in with both parents and Cathy pointed this out, a nurse began yelling at the boy’s family, who didn’t speak English, and told them one parent needed to leave immediately. Cathy observed that this exchange lacked the standard cultural sensitivity expected in hospitals, as no translator was offered.

The following day, Cathy filed a complaint with patient relations and the hospital modified their one visitor per patient rule within 24 hours. However, she was still angry and knew more needed to be done to improve how children, and families, were treated in the ER.

“It’s been long-standing knowledge that we don’t have good pediatric emergency care in Marin,” Cathy said. “We usually have to go over the Golden Gate Bridge to a children’s hospital. In an emergency, we can’t be dependent on this, especially because children make up 20% of Marin’s population.”

Over the next six months, Cathy’s anger shifted to productivity as she began diligently attending the Marin Healthcare District’s monthly board meetings, learning all she could about key players, and listening to what the community had in mind for Marin General’s future. She and Michael formed a business plan, and in June of 2016, Cathy pitched her Ouchless ER model to the hospital board. She used past Ouchless projects as examples, as well as results from a 2013 national pediatric readiness survey that showed that many community hospitals in California lack basic emergency tools — the average rating being a C-. To raise money for the project, Cathy proposed (and executed) a community matching fund. The entire Ouchless platform was well-received by the hospital administration.

“When I finally spoke up in the meeting, everyone was floored to find out that I was just a mom who was really angry, and I had an idea of how we could do better for our children,” Cathy said. “The administration loved the idea and immediately had me in the office the following day, and from there it plays out just like a Disney movie.”

An Ouchless Executive Committee was formed, and a $30,000 donation was secured from the Schultz Foundation (named after Andrea Schultz, who chairs the Marin General Foundation Board of Directors) as well as an additional $120,000 from the hospital itself. Staff from Benioff Children’s Hospital came to Marin General and trained the pediatric emergency department on new Ouchless-friendly equipment, different pain management techniques, and how to address the various developmental levels of children. The hospital began employing Ouchless techniques in November of 2016.

“The important part of this program is allowing children to feel like they have choices and that they’re in control,” said Michelle Tracy, director of emergency and trauma services at Marin General. “We also understand that you don’t just have one patient, but two or three, including parents.”

In the days before Ouchless, parents would observe while nurses worked, resulting in a very traumatic experience for all. Now, through training, staff has learned that you include parents as often as possible. For instance, children now sit on their parents’ laps while nurses draw blood, in rooms painted with bright, fun designs.

Other new pediatric room designs include monkeys and hot air balloons

The new program also focuses on distraction techniques such as blowing bubbles, reading books, or playing with blocks when a procedure (such as a blood draw) is done. Dolls are used to explain what will happen, and shots are given through a J-tip “needle,” which is actually a syringe that works through air compression to numb the skin before a shot or IV is given. Pain and anxiety medication are administered through a fast-acting nasal mist, and for older children who aren’t too afraid of shots, a vibrating toy bee with an ice pack is placed on the arm to numb the injection site.

“We’re already starting to get a lot of thank you notes,” Michelle said. “When children leave the ER, they don’t look like they’ve been traumatized. They’re leaving with smiles on their faces and saying thank you to the staff.”

For Michelle, establishing this type of pediatric emergency program at Marin General has always been a goal — both for professional and personal reasons. Years ago, she and her then 4-year-old daughter were in a bad car accident in New York and transported to the hospital where Michelle was employed as a nurse. Similar to Cathy, Michelle experienced less-than-empathetic care in the emergency department. Staff assumed she was drinking (false) and, after 72 hours, casually told her she would need to look into home care options for her daughter, who survived but would be severely brain damaged and require months of rehabilitation.

When she finally went back to work in New York, she entered the pediatric emergency department and made sweeping changes to the program, spending her time advocating for patients and families and learning how to care for the caregiver. With all the West Coast focus on cardiac, trauma, and stroke care, Michelle was never able to fully focus on pediatrics until she connected with Cathy.

“Cathy and I immediately bonded, and she helped make pediatrics a forefront item when she came into the picture,” Michelle said. “I couldn’t have done it without her, and she couldn’t have done it without me.”

The Ouchless program has been well-received within Marin General, with requests from different departments for their own trainings. Tracy plans to hire a child life specialist, an individual who helps families deal with all aspects of hospitalization and illness, to work alongside children wherever they go in the hospital. She’s also formalizing an Ouchless training model that will be shown to all new hires, and that can be shared with other hospitals.

Cathy’s ongoing goal is to expand Ouchless to different hospitals by empowering parents to advocate for this powerful model of care within their local hospitals.

“If you want a solution, be a part of it, and if you’re angry about something, figure out what role you can play,” Cathy said.

Children’s Bill Of Rights, Autism Transition, & Social Media Support For Parents Of CYSHCN

fvca Latest News January 4, 2017January 4, 2017

This newsletter was sent January 3, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

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

NEWS

Proposed Bill Declares All Children In California Are Entitled To Basic Rights

Senator Richard Pan (D) introduced the Children’s Bill Of Rights (SB 18) at a news conference on Dec. 12, stating that all children and youth should have access to quality education, appropriate health care, and safe, supportive environments. The proposal, sponsored by Common Sense Kids Action, says the Legislator will work on establishing a framework that governs the rights of all children and youth. To read more, click here.

California State Senate Committee Chairs, Members Named For 2017-2018 Session

State Senate President Pro-Tem Kevin De Leon (D) made his selections for 2017-2018 committee chairs and members on Dec. 19. Known advocates for the disability community include Senator Holly Mitchell (D) as the new chair of the Senate Budget And Fiscal Review Committee, Senator Richard Pan (D) as the new chair of the Senate Budget Subcommittee #3 on Health And Human Services, Scott Wiener (D) as the new chair of the Senate Human Services Committee, and Senator Ed Hernandez (D) as the continuing chair of the Senate Health Committee. To read more about these appointments, click here for information from the California Disability Community Action Network.

RESOURCES

New Autism Transition Report Released From The Government Accountability Office

Titled “Youth With Autism: Roundtable Views Of Services Needed During The Transition Into Adulthood,” this report examines the types of services and supports transitioning youth with autism require to reach their adulthood goals. It also looks at the characteristics of these services and supports, and how youth with autism can be fully integrated into society. The report is the result of a roundtable discussion with adults with autism, parents of youth with autism, providers, and researchers. To read the report, click here.

Study Finds U.S. Families Provide 1.5 Billion Hours Of At-Home Care To Children With Chronic Medical Needs At Substantial Economic Cost

In a new American Academy Of Pediatrics study titled “Family-Provided Healthcare For Children With Special Healthcare Needs,” researchers found that roughly 5.6 million children with special needs are receiving 1.5 billion hours of at-home care that, if replaced with labor, would cost the U.S. health care system an estimated $12-$36 billion a year. The study also found that costs borne by caregivers who provide time-intensive care were greater for those who had children with more severe conditions. To read the abstract, click here (full study only available to AAP members).

The Role Of Online Parent-To-Parent Support In Educating Parents Of Children With Special Health Care Needs

A new study from the Journal Of Medical Internet Research explores the role of digital parent-to-parent support and evaluates its effectiveness as a resource for parents of children with special health care needs. Researchers found that, with the aid of digital parent-to-parent emotional and informational support, parents often developed the ability to advocate for their child and gained a deeper understanding of their child’s condition. Also, because social media opens new opportunities, the researches also suggest that providers develop appropriate strategies to support parents through digital resources. To read the article, click here.

Health Access California Fact Sheets: Our Health Care At Risk

In light of the recent election and proposed cuts to health care, Health Access California has created two fact sheets that highlight the historical importance of Medicaid, Med-Cal, and the Affordable Care Act. The fact sheets also demonstrate the impact the proposed cuts could have on people with disabilities and low-income families. To view Our Health Care At Risk, click here, and to view the fact sheet specifically on Medi-Cal, click here.

OPPORTUNITY FOR INPUT

RFA: State Teams Interested In Receiving Assistance In Adopting The National Standards For Systems Of Care For Children And Youth With Special Health Care Needs

AMCHP and the National Academy For State Health Policy (with support from the Lucile Packard Foundation For Children’s Health) are looking for state teams who’d like to receive peer-to-peer technical assistance as they adopt the Standards to improve their state system of care for children and youth with special health care needs. Applications are due by Jan. 23. To learn more about the RFA, click here, and to review the Standards, click here.

Genetic Alliance Seeks Feedback For Next Phase Of Strategic Plan

Genetic Alliance has created a survey to help shape the future of their organization and prioritize what’s important in the current health care landscape. To take the short survey, click here.