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

This newsletter was sent June 20, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

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

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

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

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

Related

Disability Advocates Fear Impact Of Medicaid Cuts In GOP Health Plan

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

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

RESOURCES

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

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

Related

Cuts To Medicaid Devastating For Rural Area Kids

California’s Rural Counties Benefit Most From Government Health Coverage

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

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

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

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

Related: Many Adults With Autism Struggling Even With Services

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

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

OPPORTUNITY FOR INPUT

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

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

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

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

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

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

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

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

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

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

RelatedThe Faces Of Medicaid

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

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

WEBINARS

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

Hosted by: The Center For The Study Of Social Policy

More information and registration here. Accompanying report here.

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

Hosted by: Food Allergy Research & Education

More information and registration here.

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

Hosted by: Public Health Awakened

More information and registration here.

June 22: FY2018 Budget

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

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

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

Hosted by: Down Syndrome Affiliates In Action

More information and registration here ($25).

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

Hosted by: The National Academy For State Health Policy

More information and registration here.

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

Hosted by: The National Organization On Fetal Alcohol Syndrome

More information and registration here.

June 27: RARE Patient Impact Grant Q&A

Hosted by: Global Genes

More information and registration here.

June 27: Novel Approaches To Public Health

Hosted by: The Public Health Institute

More information and registration here.

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

Hosted by: The Administration On Community Living

More information and registration here.

ARTICLES

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

The Myth Of Disability ‘Sob Stories’

I Lost My Voice, But Help Others Find Theirs

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

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

California Schools Respond To Students’ Fears Of Trump Immigration Policies

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

Zika In America: One Mother’s Saga

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

Wisconsin Family Stays Together With Help From Medicaid

At Airports, Making Travel Easier For Autistic Passengers

 

Shared Decision-Making, Fragile X Syndrome, & Psychotropic Drugs

This newsletter was sent June 6, 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: Let your Senators know why Medi-Cal is critical to children and youth with special health care needs & urge them to vote ‘no‘ on the American Health Care Act. Resources here.

NEWS

$80,000 Allocated In Budget To Fund Psychotropic Drug Reviews For Foster Youth

The National Center For Youth Law announced that their campaign to include an additional $80,000 in the state budget for stricter guidelines surrounding foster youth and psychotropic drugs was successful. Over-medicated children can face serious, lifelong health consequences including morbid obesity, diabetes, and cardiovascular damage. If approved by Governor Brown, the $80,000 would ensure foster children are prescribed psychotropic medications within safety thresholds, and that all kids on these drugs would have access to a psychiatric review no matter where they live. As it stands, many counties are not able to provide this third party review due to a shortage of child psychiatrists within California. For more information, click here.

DHCS Releases Final Evaluation Designs For Medi-Cal 2020 Initiatives

The Department Of Health Care Services (DHCS) has submitted final designs to evaluate four programs under California’s Medi-Cal 2020 demonstration for approval by the Centers For Medicare & Medicaid Services (CMS). DHCS developed the final evaluation designs in response to CMS’ comments and stakeholder feedback on draft evaluations. Over the course of the demonstration period, DHCS must specify methods to determine and analyze the impacts of the following programs: the California Children’s Services pilot, the Dental Transformation Initiative, the Global Payment Program, and services for Seniors and Persons with Disabilities. For more information, click here.

RESOURCES

National Title V Children And Youth With Special Health Care Needs Program Profile

The Association Of Maternal & Child Health Programs has released a new report based on a survey of state and territorial agencies that provide services with federal Title V funding. It explores children and youth with special health care needs programs, the roles they play in systems of care, partnerships, financing of care, and emerging issues. To read the report, click here.

AAP Issues Guidance On Pediatrician’s Role In Shared Decision-Making For Children With Disabilities

In a new report from the American Academy Of Pediatrics (AAP), researchers acknowledge the pediatrician’s central role in the many decisions that come forth when raising a child with a disability. The guidance urges pediatricians to ensure information is “exchanged in both directions” between themselves and families. They should also take all values and priorities into account. Stressful health care situations that arise for families of children with disabilities and their care teams can sometimes prevent a decision, and the AAP’s guidance offers information and clinical tools for shared decision-making, or a framework that promotes family and clinical collaboration, that can help all parties arrive at the best treatment plan. To view the guidance, click here, and to read an article summarizing the report, click here.

Related: Pediatricians Pressed To Help Families Of Kids With Disabilities

New AAP Supplement On Current Knowledge, Research Regarding Fragile X Syndrome

A new supplement in this month’s issue of Pediatrics summarizes current knowledge of fragile X syndrome and reinforces the pediatrician’s role in early identification and working with families to improve outcomes and quality of life. It also discusses the importance of genetic testing in attempt to reach an actual diagnosis. To read the supplement, which consists of eight articles, click here, and to read an article summarizing findings, click here

OPPORTUNITY FOR INPUT

Rare Disease Research Grants Now Available: Applications Due June 23

The National Organization For Rare Disorders is offering research grants for the study of five specific disorders: alveolar capillary dysplasia with misalignment of the pulmonary veins, appendix cancer and pseudomyxoma peritonei, cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. Initial applications due June 23. For more information, click here.

Youth With Disabilities Encouraged To Join Sacramento’s Disability Action Day

The Disability Action Coalition is hosting its annual Disability Capitol Action Day in Sacramento on June 13, and YO! Disabled & Proud is calling on all youth with disabilties 16-28 years old (and their allies) to participate. Throughout the day, attendees meet with their legislators and discuss key bills. YO! hopes to focus on improving translation services during Individualized Education Plans (SB 354), suicide prevention in K-12 and college (AB 917 and AB 1318), and ensuring that fee waivers continue to aid lower-income students (AB 204). For more information, click here or email Yolanda at yolanda@cfilc.org.

Related: Disability Advocates Protest Medicaid Cuts

WEBINARS

June 12: 2018 Fiscal Year Presidential Budget Review

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

More information and registration here.

June 13: Innovative Health Care Financing Strategies For Children And Youth With Special Needs 

Hosted by: The Catalyst Center and The American Academy Of Pediatrics

More information and registration here. Check out the accompanying supplement in Pediatricswhich contains eight articles analyzing value-based purchasing and value-based insurance design in relation to children with special needs. 

June 13: Maximizing Access: Connecting Health Care And Oral Health Care

Hosted by: The Office Of Disease Prevention And Health Promotion

More information and registration here.

June 13: Strength-Based Approaches To Screening Families For Health-Related Social Needs In The Health Care Setting

Hosted by: The Center For The Study Of Social Policy

More information and registration here.

June 15: Measuring Family Experience Of Care Integration To Improve Care Delivery

Hosted by: The Lucile Packard Foundation For Children’s Health and Family Voices

More information and registration here.

June 15: Impact Of Zika On Women And Children: Realities And Recommendations For Public Health Professionals And Clinicians

Hosted by: Boston University School Of Public Health

More information and registration here.

June 20: Achieving Partnership: Integrating Family Engagement In Systems Of Care

Hosted by: The National Center For Medical Home Implementation

More information and registration here.

June 22: Integrating Community Pharmacists Into Complex Care Management Programs

Hosted by: The Center For Health Care Strategies

More information and registration here.

June 24: Abuse Prevention And Reducing The Risk Of Violence

Hosted by: Parents Helping Parents

More information and registration here.

June 27: Autism And Technology

Hosted by: The Autism Research Institute

More information and registration here.

June 29: Bullying Prevention For Individuals With Intellectual And Developmental Disabilities

Hosted by: The University Center For Excellence In Developmental Disabilities

More information and registration here.

ARTICLES

Complex Child June Edition: Education And Learning

Trump Budget Guts Medicaid, Disability Programs

Medicaid And Children With Special Health Care Needs 

After Outage, Ed Department Unveils New IDEA Site

Moms Are Speaking Out For Health Care

Trump’s Budget Takes Aim At My Sweet Son

Dealing With Dyslexia, Starting With One Family’s Battle For A Diagnosis

Surprise For A Mother Who Helped Her Paralyzed Son In Every Class

The High Cost Of Childhood Disruptive Behavior Disorders

Why Parents Of Kids With Special Needs Are Fighting Bathroom Bills

Stark Disparities Persist At Centers Serving Children With Special Needs

Infographic: Medicaid’s Role For Children With Special Health Care Needs

Do Charter Schools Serve Special Needs Kids? The Jury Is Out

A Baby Girl. A Baffling Disease. And The Only Way To Help Her Is To Hurt Her

CDC Annual Summary Observes Decreases In Infant Mortality Rates, Teen Birthrates

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

This newsletter was sent May 23, 2017. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Family Voices Hosts Southern California Project Leadership Alumni Luncheon May 6

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

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

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

RESOURCES

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

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

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

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

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

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

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

OPPORTUNITY FOR INPUT

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

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

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

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

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

WEBINARS

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

Hosted by: The National Disability Institute

More information and registration here.

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

Hosted by: The National Institute For Health Care Management Foundation

More information and registration here.

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

Hosted by: The National Hemophilia Foundation

More information and registration here.

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

Hosted by: The National Center On Medical Home Implementation

More information and registration here.

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

Hosted by: The American Academy Of Pediatrics

More information and registration here.

May 25: Diversity And Language In Patient Engagement

Hosted by: The Center For Care Innovations

More information and registration here.

May 30: Handheld Technology Supports And Transition To Employment

Hosted by: The Center On Technology And Disability

More information and registration here.

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

Hosted by: The Center For The Study Of Social Policy

More information and registration here.

June 13: Toward Rapid-Acting Treatments For OCD

Hosted by: The Brain & Behavior Research Foundation

More information and registration here.

June 20: Supporting Families Impacted By Zika

Hosted by: The CityMatch Learning Network

More information and registration here.

ARTICLES

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

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

New Medicaid Waiver Rule Delayed

Trump’s 4T Budget Arrives On Capitol Hill

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

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

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

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

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

Racial And Ethnic Disparities Persist In Sudden Infant Deaths

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

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

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

When The Immune System Thwarts Lifesaving Drugs

Ideas For Supporting Transitioning Youth, Mental Health In Rural Areas, & Pediatric Hearing Aids

This newsletter was sent May 9, 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.

House Passes Health Care Bill — Advocacy Must Continue As AHCA Heads To Senate

The House passed the American Health Care Act (AHCA) on May 4, a measure to repeal and replace the Affordable Care Act. The vote was close — 217-213  with 20 moderate Republicans voting against the bill. This was a direct result of the incredible advocacy of so many. Although disappointing, this is only the first in a number of steps for the AHCA to become law.

Now, the fight moves to the Senate. While we don’t expect that the AHCA can pass the Senate as is, we need to continue our aggressive advocacy to prevent any version of the bill from passing — particularly one that decimates Medicaid/Medi-Cal and threatens services for children and youth with special health care needs. For ideas on what to do next, click here.

Related: Threat To Medicaid Puts Children’s Health Care On The Line & Cuts To Medicaid Would Harm Young Children With Disabilities

RESOURCES

Action Brief: Transitioning To Adult Care: Supporting Youth With Special Health Care Needs

This brief produced by Children’s Hospital of Philadelphia’s PolicyLab acknowledges youth with special health care needs face unique issues as they transition to adult care, and that challenges during this period can lead to lapses in coverage, reduced access to services, and emergency room visits. Researchers surveyed providers, patients, and families to understand what barriers transitioning youth face, and what institutional supports are in place to help. In this brief, these barriers are identified and PolicyLab provides recommendations for providers, health care systems, and policymakers to help ease the transition process To read the brief, click here.

Data Brief: Family Caregiver Support For People With Disabilities

Results collected by The Arc from a survey on family and individual needs for disability supports showed that family caregivers play a critical role in providing supports to individuals with intellectual and developmental disabilities. The ensuing research brief details the kinds and amount of supports provided by family caregivers to individuals living in their home. Over half of survey respondents reported caring for someone between the ages of 10-30, and 40% stated they provide more than 80 hours of care per week. Emotional support, transportation, and cooking/housekeeping ranked as the top three kinds of support. To read the data brief, click here.

Related: Video: hear from people with disabilities on how their siblings support them, and what could be improved. 

Policy Brief: Access To Mental Health Services For Children In Rural Areas

This brief from the Centers For Disease Control And Prevention presents a selection of potential policies and practices that may help rural children with mental, behavioral, or developmental disorders better access behavioral health services. These polices and practices include telemedicine, integration of behavioral health and primary care, and school-based care. To read the brief, click here.

RelatedSupply And Demand For Child And Adolescent Mental Health Services & May 18 webinar on Project ECHO (Extension For Community Health Care Outcomes).

New Resources For Cultural Competency In Medicaid And Medicare Enrollment

Medicaid and Medicare enrollees are diverse in race and ethnicity, language, health condition, disability status, and other characteristics. Providing culturally competent care means respecting individuals’ varying beliefs and meeting their social, cultural, and linguistic needs. Resources For Integrated Care has released a new page of resources to support providers and health plans serving Medicaid and Medicare in offering culturally competent care. There’s information on culturally and linguistically appropriate services (CLAS), improving equity and reducing disparities, data sources, and more. To access the resources, click here

OPPORTUNITY FOR INPUT

Survey: Researchers Examining Special Education Within MENASWA Community

The Center For Teaching And Learning at California State University Northridge is gathering demographic data about Middle Eastern, North African, and Southwest Asian (MENASWA) families of children with special needs who are part of special education programs. Researchers are hoping to to identify which strategies for serving students with disabilities are the most helpful as perceived by MENASWA families. To take the survey, click here.

Survey: Young Adults With Pediatric Rheumatic Diseases Can Help Inform App

Mobile app developers are looking for young adults with pediatric rheumatic diseases (and their parents) to take a survey that will help with the creation of a smartphone app aimed at supporting transition from pediatric to adult centered care. To take the survey, click here.

Letters Of Support Needed For AB 1610: Pediatric Hearing Aid Insurance Coverage 

California Hands And Voices is asking for letters backing AB 1610, a measure which would require health insurance policies and health care service plans to cover hearing aids for individuals 18 years-old-and younger. Letters can be emailed to Lorena Gonzalez Fletcher, chair of the Committee on Appropriations, at nardos.girma@asm.ca.gov.

SAVE THE DATE

June 13, Sacramento CA: Statewide Disability Community Resource Fair. Booth registration information here, general registration here

August 12, Pomona CA: Breaking Barriers, Developing Possibilities: Bridging Pathways To Quality Health Care For People With Special Needs. More information here.

October 5-6, Houston TX: 18th Annual Chronic Illness And Disability Conference: Transition From Pediatric To Adult-Based Care. More information here.

WEBINARS

May 9: Medicaid Waivers And Children’s Oral Health 

Hosted by: Children’s Dental Health Project

More information and registration here.

May 15: Beyond Coexistence: Cultivating Successful Family Partnerships In Clinical Practice

Hosted by: National Center For Medical Home Implementation

More information and registration here.

May 18: Policing And People With Disabilities: Community-Based Solutions

Hosted by: The Arc

More information and registration here.

May 18: Project ECHO (Extension For Community Health Care Outcomes): Building Community Online

Hosted by: Family Voices

More information and registration here.

May 18: Fetal Alcohol Spectrum Disorders And The Role Of Occupational Therapy

Hosted by: The National Organization On Fetal Alcohol Syndrome

More information and registration here.

May 18: Women And Girls With Bleeding Disorders: Challenges In Diagnosis And Management

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

More information and registration here.

May 18: Who’s Leading The Leading Maternal, Infant, And Child Health Indicators? 

Hosted by: The Office Of Disease Prevention And Health Promotion

More information and registration here.

May 23: The Disability Integration Act And Why It Matters To You

Hosted by: United Spinal Association

More information and registration here

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

Hosted by: National Center For Medical Home Implementation

More information and registration here.

ARTICLES

My Medicaid, My Life

Complex Child Magazine: Annual Respiratory Edition

Kern County Stands To Lose Big If ACA Is Repealed

Screen Children With Neurodevelopmental Disabilities For Vision Problems

Bipartisan Legislation Enhancing Childhood Hearing Loss Initiatives Praised

Severe Shortage Of Home Health Workers Robs Thousands Of Proper Care

Babies’ Brain Signals Offer Window Into Treating Their Pain

Scientists Create Artificial Womb That Could Help Prematurely Born Babies

Why Some Adults, Event Into Their 40s, Still See The Pediatrician

San Francisco’s New Assistive Technology Lab

Project Austin Teaches Emergency Responders About Kids’ Special Medical Needs

Before You Act On Health Care, Congress, Consider Children Like My Wendy

Jimmy Kimmel’s Emotional Monologue: His New Son’s Heart Condition

 

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

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

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

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

The Background

On May 4, the House passed the American Health Care Act, a measure to repeal and replace the Affordable Care Act (ACA). This bill would drastically restructure California’s Medi-Cal program, threatening care and services for children and youth with special health care needs. The House vote was close — 217-213 — with 20 moderate Republicans voting against the AHCA. The Senate is expected to vote on their current draft of the bill, the Better Care Reconciliation Act, by the end of June.

Specifically, the health care bill would cut and cap Medicaid funding, likely causing 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 legislation 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)

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

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

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

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.

RelatedDoctors: Climate Change Is Already Making America’s Kids Sicker

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.

Related: VIDEO: Medi-Cal Is Critical For Children And Youth With Special Health Care Needs

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.

Related: National Organization For Rare Disorders 2016 State Report Card

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 NetworkKids 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

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:

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

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 Dayfollow 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 educationspecifically, 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.

Related: February 21 Medicaid And Public Schools webinar 

Related: Kaiser Family Foundation Brief: Medicaid And Children With Special Health Care Needs and 5 Key Questions: Medicaid Block Grants & Per Capita Caps

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

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